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					                              Detroit Envision the Future Summit
                          Listening Session Transcripts (Rough Edit)
                                       December 2, 2010
The following is a ROUGH CUT of the Detroit Envisioning the Future listening session
CART. This session was an open public session. The opinions and statements
represented in this document are those collected from all individuals who registered and
presented at the event. The materials have been edited for format only. No other edits
have been made.

Table of Contents
Welcome .............................................................................................................................. 2
Commissioner’s Opening Remarks..................................................................................... 3
Panelist Introductions (morning) ....................................................................................... 6
Childhood ............................................................................................................................ 7
Adulthood (morning) ........................................................................................................ 19
Panelist Introduction (afternoon)..................................................................................... 41
Adulthood (afternoon) ...................................................................................................... 43
Aging.................................................................................................................................. 63
Supports ............................................................................................................................69
Commissioner’s Closing Remarks.....................................................................................85

                             Detroit Listening Session Transcript (Rough Edits)
                                             December 2, 2010

Moderator Kate Fialkowski
Good morning. My name is Kate Fialkowski. I am the Envisioning the Future Summit
coordinator and today I am going to be your moderator. When you see me standing up
here in front of the microphone like this, that means sit down, take your seats and we
will be getting started. Thank you very much. We are waiting for the panel to join us.

In the meantime I just wanted to review again a few of the rules for the speakers for
today. Speakers, as I mentioned, we are going to be calling your names two at a time.
The first person called will be the first person to speak. The second person who is called
will be the person who will be next up to speak.

When it's your turn to testify please make your way to the podium to begin your
presentation. You will have approximately three minutes to speak. As you are speaking,
there will be several cues for you how you are doing on time. Don't worry about it, take
your time, remember to breathe, everything will be just fine.

I want to point out there are two people in the front of the room. If you guys could raise
your hands. Kathy and Trina, these ladies are your timekeepers for the day. If you are
wondering how you are doing on timing, give them a look and they will be able to help
you. I want to let you know that we had more people registered in Detroit than we had in
any other city. [Applause]

I want to say congratulations not only to those of you in Michigan, but also we have
people who have joined us from several other areas, from Illinois, Indiana, Ohio,
etcetera. Thank you so much for making the effort to come here and in particular, what
welcoming weather we have. Thank you very much.

As you are up here and when you speak, as I mentioned, there's going to be a panel up in
the front. We don't have time today for the panel to speak to each and every speaker. In
some cities we've been able to do that but unfortunately; we are pretty tight on the
schedule today. Some of the speakers will be getting questions from the panel. When the
panel and the speakers are finished, the Commissioner will end that particular
presentation and will call up the next presenter. I wanted to let you know how that's
going to work.

A couple of housekeeping rules for everyone, first of all, please turn off your cell phones.
Let's do the cell phone check. Undoubtedly, the person whose cell phone will ring will be
mine because I don't have my bag with me.

A few more housekeeping rules: I want to let you know that we are going to be taking a
break in the morning, and then lunch, and then a break in the afternoon. For lunch, if
you go to the pub, they have an ADD special at the pub so you can get in and out quickly
and it's like $10 bucks. I'm not sure what is on it, but it's probably a soup and salad kind

                   Detroit Listening Session Transcript (Rough Edits)                      2
                                   December 2, 2010
of thing. I want to let you know that is probably the best choice that you have for lunch
and they are prepared to accommodate all of us.

One other housekeeping rule, there are some people with a tag that says staff. So if you
have any questions during the day, don't hesitate to speak to anyone of us. Thank you
for going over the rules with me and we are going to let the panel join us, so just give us
a second to set up. Thank you. [Applause]

Commissioner’s Opening Remarks

Speaker: Commissioner Sharon B. Lewis
Good morning and thank you for your patience as we got set up here. Welcome to
Detroit and the fourth of our envisioning sessions that ADD has been holding across the
country. It has been a wonderful opportunity.

I'm very excited to hear from all of you today about your priorities and your ideas, your
hopes and your fears and your dreams, and to think together about how we can ensure
that people with intellectual and developmental disabilities have the rights and
privileges that the four goals of the Americans with Disabilities Act affords them. A
quality of opportunity, full participation, independent living and economic self-

We have over 40 people planning to speak today and each person has a perspective that
we need to hear. By the time we complete these regional meetings next week in Denver,
we will have heard directly from over 600 people from 45 states and territories across
the country.

We have heard from families who simply want to see their young children access a
quality inclusive education with their peers but yet still have little to no support from the
schools. From self advocates who understand and live and breathe the values of self-
determination and interdependence, yet see service systems that don't support those
values. From parents of people with severe disabilities who struggle to see how their
sons and daughters can live safely in a community home as opposed to an institution.
From youth with disabilities who expect a lot more from life than living in a group home
and spending their days shredding paper in a sheltered workshop.

Perhaps most hopefully, from young adults with intellectual and developmental
disabilities who are working in competitive integrated employment situations that not
only give them the power that comes from earning one's own money but also the joy and
the pride and the friendships that come from meaningful work in welcoming

One striking exchange throughout this process involved a parent who spoke very
passionately with a heart full of love and good intentions about all of the fear and
anxiety that parents experience, related to the community living. This parent spoke

                   Detroit Listening Session Transcript (Rough Edits)                         3
                                   December 2, 2010
about the need to protect, the need to keep safe, the need to care for; but spoke very
little about the hopes and the dreams and desires of their daughter. Later that day,
I spoke to the young woman in question, and I spoke to her without her parents nearby.
She talked to me about wanting to live with friends, near but not with her parents,
finding a job working with animals. She sees a future for herself that her parents could
not. Yet, she does not have the supports in her life to move past her parents.

By way of contrast, another young man with significant multiple physical and
intellectual disabilities used assistive technology to speak to us about his life, about
working in a job that he loves involving race cars. Building his own micro-enterprise,
and living in his own home. His mom also spoke, and she spoke about her fears and
anxieties, but she talked about the need to let him take risks and live his own life now so
that when she is gone, he has a support system that will endure.

All of these stories have something to teach us and all of your ideas and your solutions
are welcomed. We are here to listen, to understand and to learn. To each of you who
have come as presenters, thank you. Thank you for your commitment, for your
willingness to share your stories, the ideas from your heads, the emotions from your
hearts. I know that it takes a lot of conviction and courage to stand up here in front of a
room of people and we appreciate your leadership.

To each of you who have come to listen, thank you as well. We are glad that you are here
and we hope you will also communicate your thoughts in conversations today on the
breaks or perhaps through written comments on the website. To all of you who are
stakeholders here who are listening today in order to help us prioritize for action
tomorrow, thank you very much for committing two full days of your valuable time to
help us build our strategic plan.

At the celebration of the 20th anniversary of the ADA in July, President Obama
remarked on his vision for our country and I quote, "To look out for one another, to
advance opportunity and prosperity for all of our people, to constantly expand the
meaning of life, liberty, the pursuit of happiness. To move America forward."

That's what we did with the ADA and that's what we hope to continue to do with your
help at the Administration on Developmental Disabilities. To look out for one another,
to improve our society so that everyone, including people with disabilities, are
welcomed, accepted, supported and have the opportunity to be contributing members of
our diverse communities, pursuing rich and meaningful lives.

During the most recent reauthorization of the Developmental Disabilities Assistance
and Bill of Rights Act in 2000, the sponsor of the legislation, Senator Jim Jeffords,
charged the Administration on Developmental Disabilities with the responsibility, and I
quote again, "To pursue and join with other executive branch entities in activities that
will improve choices, opportunities and services for individuals with developmental

                   Detroit Listening Session Transcript (Rough Edits)                         4
                                   December 2, 2010
Senator Jeffords also remarked upon how much individuals with developmental
disabilities can accomplish when they have access to the same choices and opportunities
that are available to others and that it is our role to support self advocates in their
systems change agenda.

As Commissioner, I take both of these responsibilities very seriously. We are working
hard to collaborate with many of our federal partners who provide the resources, as well
as the monitoring and oversight for the services and supports that families and
individuals with disabilities receive in our local communities. Our colleagues at the
Centers for Medicare and Medicaid Services, the Center for Disease Control, the Social
Security Administration, the Health and Human Services Office on Disability, the
Administration on Aging, the Department of Education, the Department of Labor
and the Department of Justice have all been invited to participate with us in this process
and many of them have joined us and will be joining us at various points along the way
reading through your comments and submissions and considering everything that we
are hearing.

Additionally, we are partnering with self advocates and their allies across the country to
ensure that self advocates have a strong voice throughout ADD's strategic planning
process both in these listening and prioritizing sessions as well as through a series of
meetings early next year focused solely on the self advocacy movement. The voices of
people with intellectual and developmental disabilities are absolutely critical and must
be central to all of our efforts. Including the people with the most significant intellectual
and communication challenges, who may not always be visible and may not always be

The DD Act lays out our mission and purpose very clearly. We are, and I quote, "to
assure that individuals with developmental disabilities and their families participate in
the design of and have access to needed community services, individualized supports
and other forms of assistance that promotes self-determination, independence,
productivity and integration and inclusion in all facets of community life.” The
expectations established in these two federal civil rights laws - the ADA and the DD Act-
provide a tremendous foundation for us to build upon. While the ADA has protected the
civil rights of all Americans with disabilities for just over 20 years now, for nearly 50
years, the legacy of the DD Act has acknowledged our countries responsibility to protect
the rights of and ensure equal opportunity for some of our most vulnerable citizens,
people with intellectual and developmental disabilities.

Services and supports across the lifespan are critical for people with intellectual and
developmental disabilities and their families. I don't think anyone here in the room with
us today would disagree with that. But how we deliver those supports, what we focus on
and prioritize, and how we address the difficult economic and political climate continues
to evolve and change over time. Not so very long ago we thought the delivery of services
through congregant institutions was the most humane and appropriate thing we could
do. We thought that doctors knew the most and the best and we focused primarily on
the medical model. The quality of life and quality of relationships were often secondary
considerations. We certainly did not think about education, let alone employment or

                   Detroit Listening Session Transcript (Rough Edits)                       5
                                   December 2, 2010
economic self-sufficiency. Our expectations as a country and a society were
embarrassingly low.

Thankfully, most of our country has moved past this thinking. However, the old ways
still linger in some places and we still have people living in institutions and other large
congregate facilities, children attending segregated schools in separate classrooms and
adults spending their days in sheltered workshops earning pennies an hour.

This, despite the fact that we know that people with disabilities, including people who
have been labeled as profoundly disabled or medically fragile or severely affected benefit
most when they are supported to pursue their goals and the aspirations that many of us
share, to live where and how we choose in a home with others we care about; to have
access to education and lifelong learning; to have a chance to do work that we like; to
earn and control and maintain financial resources and most importantly, to have real
love in our lives--meaningful, reciprocal relationships in our communities with friends,
neighbors, spouses, children and family. We know that all, all people with intellectual
and developmental disabilities can exercise choice, control and self-determination,
including people with very significant disabilities.

And, with the right supports, people with disabilities can achieve many things including
completing elementary and secondary school, going on to college, working in
competitive and integrated employment, falling in love and raising families and
participating fully as contributing members of our interdependent, integrated and
inclusive communities; members who both receive and give support to others in a
variety of ways. To expect anything less is simply disrespectful and would be a loss to all
of us. How we get there and what we prioritize to achieve this vision is the question that
I hope many of you will help us answer. I look forward to hearing your comments today.

Panelist Introductions (morning)

Thank you. I'd like to take a minute to have our esteemed panel introduce themselves.
We will have two panels today, one joining us in the morning and one joining us in the
afternoon. I would like to turn it over to them.

Panelist: Ms. Shari Cooper
Good morning. I am Shari Cooper and I represent the Ohio Developmental Disability

Panelist: Mr. Charlie Lakin
I am Charlie Lakin. I work at the University of Minnesota at the University Center on
Developmental Disabilities.

Panelist: Ms. Tia Nelis
Hi, I am Tia Nelis and I work at the University Center for Excellence in Illinois and I'm
also a member of People First.

                   Detroit Listening Session Transcript (Rough Edits)                         6
                                   December 2, 2010
Panelist: Ms. Gloria Krahn
Good morning, my name is Gloria Krahn and I'm with the Center for Disease Control
and Prevention in Atlanta, Georgia, another one of the Federal agencies.

Speaker: Commissioner Lewis
Great, so as Kate explained, prior to my comments, we are going to get started. I'd like to
announce the first two -- no? I'm getting the hook. A change in plans?

Moderator: Kate Fialkowski
See how that hook works? It's really subtle. Nope.


Moderator: Kate Fialkowski
Okay. This morning, our first topic as you know, our day has been organized by different
life stages. We have four life stages, childhood, adulthood, aging and supports. The
adulthood topic will be in the morning and in the afternoon. The first topic is childhood.
ADD proposed the following question in this area, how do we ensure that each child
with a developmental disability will live a happy and healthy life in a loving family
home, fully participate in all the experiences of childhood in inclusive, welcoming
communities. Be empowered to advocate for themselves and successfully graduate from
school, prepared for college, or a career of their choosing? Commissioner, now would
you like to call the first two speakers?

Speaker: Commissioner Lewis
If we could start with Lara Shovlin. I apologize if I'm mispronouncing any names and we
have Shon Halacka on deck.

Speaker: Lara Shovlin
Thank you Commissioner Lewis, the members of the panel, colleagues and self
advocates. I'd like to speak with you today on the issue faced by those individuals with
developmental disabilities.

My name is Lara Shovlin. I'm the regional parent mentor with the Michigan Alliance for
Families. I speak to you both as a professional and as a parent on the topic of childhood.
As I pose the question that the Administration on Developmental Disabilities had posed,
I really wanted to talk about the need for more education and support for parents with
children with developmental disabilities. As research has shown us, the earlier the
intervention, the greater likelihood of a quality of life and success.

This problem is not unique to Detroit, Michigan, or the U.S. It's important to address it
because without the ability to empower our families, to advocate during the youth years,
it limits the ability to access the resources they need and get the support they need from
the schools and the community. What we need is more parent friendly resources, print
and otherwise, mentors to support those parents and training to organizations such as
the Michigan Alliance for Families.

                   Detroit Listening Session Transcript (Rough Edits)                      7
                                   December 2, 2010
We need better cooperation with schools including administrators, teachers, school
boards, PTOs, PTAs to view the parents as an expert in their children's needs, along with
the other educational and medical professionals.

We need to equip organizations in the community to offer family-friendly resources,
activities, educational and otherwise to assist children with development disabilities in
their development and the quality of life.

We need to encourage corporations to pay their employees to do service work with
children with developmental disabilities (for example, like the Cole's Organization) in
such areas as reading, tutoring, coaching, etc., because we all know that no matter how
much money is put toward something, it is really the work of people that gets the job

Where the Administration on Developmental Disabilities ties into this is critical.
We need the Administration on Developmental Disabilities to encourage participation
between schools and the community to assist families in accessing the services they
desperately need. We also would ask for the consideration for the Projects of National
Significance to provide support, financial and otherwise to further help support our
endeavors such as this to reach all parents. I thank you for the time you have given me
today to speak. Thank you.

Speaker: Commissioner Lewis
Thank you very much for your testimony and highlighting the importance of the early
intervention activities and the role that ADD might play. I'm particularly intrigued by
this notion of ADD's role in supporting cooperation between schools and communities
and families as well. Do you know of particular programs that really do that well and
that might serve as models for a broader implementation?

Speaker: Ms. Lara Shovlin
We are funded through a grant through the Individuals of Education Act
and we work in cooperation with organizations such as the MDE, Department of
Education as well as Early On Michigan.

Speaker: Commissioner Lewis
I think that is what you are meaning, an organization, not necessarily ours but one
supporting us?

Speaker: Ms. Lara Shovlin
Right, it would be a model that might be used elsewhere, it wouldn't have to be exactly
the same thing applied elsewhere but what seemed to be the models of principles.
I know my boss is in the room, somewhere, so he might be a better person to ask. I will
commit to getting an answer back to you.

I'm not sure who is a super great model other than the organizations I have, but what I
think is so critical is to have an opportunity like you've given us today to speak to you

                   Detroit Listening Session Transcript (Rough Edits)                       8
                                   December 2, 2010
directly, that's not an opportunity that many government or other organizations give the
community like you are.

So I think part of the model that is really empowering everyone (and one of the things
that we keep hearing) is no matter what we are doing in the schools, if the community
isn't supporting it, it's not going to succeed and that goes to your talk about
employment. Thank you.

Speaker: Commissioner Lewis
Thank you. If we could please have Mrs. Shon Halacka, I apologize if I'm not getting that
right, and Mr. Nick Gammicchia on deck.

Speaker: Mrs. Shon Halacka
Hello, I'm Shon Halacka, the president of the Michigan Chapter of the AG Bell
Association for the Deaf, I also serve as the governor appointee disability advocate to the
Michigan Rehabilitation Council. I am a parent who raised three children, all of whom
have hearing loss, ranging from severe to profound and are now successful, self-
sufficient and contributing members of society.

Hearing loss affects 12,000 children born each year in the United States. Over 90
percent of these children are born to parents who have normal hearing and have no
knowledge about hearing loss. Because babies and children learn language by listening
to the people around them, undetected or untreated hearing loss can have a devastating
effect on the child's ability to develop speech and language.

A child with limited speech and language has a difficult time receiving an education.
Hearing loss is an invisible condition because most parents have limited knowledge
and the child can't tell you what they are missing. Educators of the deaf and hard of
hearing play a more significant role with this particular handicap than others.

Families must rely on the school systems to provide the expertise and services their
child needs. Children with hearing loss need proper amplification, educational
audiologists to service them. They need teacher consultants of the hearing impaired and
speech and language teachers who are qualified to teach spoken English to children with
hearing loss.

In an attempt to cope with economic challenges, many school districts are laying off
teacher consultants and audiologists and forcing the remaining staff to serve this
exceedingly large number of students.

Schools are placing teacher consultants on the IEP as other services rather than a
service provider. Under this heading, there are no caseload restrictions. Unreasonable
caseloads make it impossible to provide adequate service to students with hearing loss.

IDEA needs to establish caseload maximums for educational audiologists and teacher
consultants who provide either direct or consultative services. IDEA needs to specify
who is responsible for implementing the IEP where goals are related to hearing loss.

                   Detroit Listening Session Transcript (Rough Edits)                     9
                                   December 2, 2010
Some school districts are combining the jobs of teacher consultants and audiologists.
These professionals are being asked to perform both jobs so the school districts can
eliminate one position. Neither is qualified to do the job of the other. Many school
districts are pushing students with hearing loss into basic 504 plans instead of IEPs.
Children with hearing loss are the victims of all these strategies.

In conclusion, standards need to be developed for educational programs of deaf and
hard of hearing students in the mainstream or in center-based programs. Standards
need to define qualifications for professionals serving hearing impaired students, their
job descriptions, their responsibilities and additionally to specify caseload limits. Thank

Speaker: Commissioner Lewis
Thank you for your comments. My question is since the administration is very willing to
include all people with disabilities and you seem very passionate about making sure
everybody is included, how could the administration help make sure that is possible to
include children with hearing loss to be able to speak out more and to be able to be a self
advocate so they could be included in schools and everything else they do as part of their
dreams in life.

Speaker: Mrs. Shon Halacka
I think probably more than anything else is we need some kind of a watchdog agency
that will oversee, because the parents, most of them, over 90 percent just don't have a
background in hearing loss. They don't understand it. Hearing loss is probably one of
the most difficult disabilities to really understand. If you met my profoundly deaf
children, you probably wouldn't know they had hearing loss, but there was work that
went into that.

 My children were blessed with people with passion, not only myself but also others that
influenced their arrival of success, but they need a watchdog that will define what
services need to be there because the schools and their efforts to balance their budgets
are doing things that are just detrimental to the success of, particularly children with
hearing loss who can't speak for themselves. I hope that answered your question. Thank
you for the opportunity.

Speaker: Commissioner Lewis
Mr. Nick Gammicchia and if we could have Dr. Lynne Tamor and Isaac Sugar on deck.

Speaker: Mr. Nicholas Gammicchia
Good morning Commissioner Lewis and members of the listening panel. I am Nicholas
Gammicchia and I am from Shelby Township, Michigan. I want to thank you all for this
opportunity to be here today and would like to tell you why.

I'm here today as an example of what determination and courage can do for a young
man like myself. Over many years, (I am now 19 years old), my parents felt what was
best - I obtained assistance for the Children's Medicaid Waiver Program and that helps

                   Detroit Listening Session Transcript (Rough Edits)                     10
                                   December 2, 2010
me a lot. My parents also work hard to change the program so I could have art and
music lessons and other support in areas that I like and I am good in.

I have brought with me some of my artwork for you to see. I also love music and
attending concerts and musicals and play the piano and drums. I tell you this because I
would like to see other children getting support from these programs get these types of
services through self-determination. Even for children, these choices should start early
and allow people like me to choose what they want to do that will help them.

These services also need to be made available in all states. If a child moves from
Michigan, they go on a waiting list, the same with adults. We need to be able to live free
where we can, and where we want to live and still get the support we need.

I am also a very active self advocate. Commissioner Lewis, you may recall meeting our
family when we traveled to Washington D.C. to meet with members of the committee to
discuss the reauthorization of IDEA. What was happening in my education process, I
discussed what was difficult for me at that time in school. I felt it was important for
students with disabilities to obtain access to general education and be a part of their
school's community and feel like they belong.

Today I am here to also seek a solution to what is facing many students like me.
Last year I was a senior in high school and earned my diploma. Below, you see me at my
graduation ceremony. It was one of the proudest days of my life. Getting here, there was
a struggle. I love attending school and that year enjoyed the homecoming dance, the
prom, the senior all-night party and doing things like videotaping and creating activities
of our school play, Willy Wonka and the Chocolate Factory.

However, my transition plan did not make a path for me beyond accepting my diploma,
and ending all supports for further education or allow me to go to college, which is what
I wanted to do. My parents and I have really fought for this and still, it has been difficult.

Speaker: Commissioner Lewis
Can you wrap up for us, please? Do you have anything else you want to say? Is it okay if
our panelists ask you a question?

Speaker: Mr. Nicholas Gammicchia
I am still attending classes in high school and have started to go to college. There is no
program for me in my district or offered by my state to assist me in my dreams to
continue college. I also obtained my own college tuition and go through a Michigan
program called -- I can receive up to $2000 if I were to accept my diploma because I
receive Medicaid. If I do this, I have to decide by age 20, I will no longer be eligible for
special education support under IDEA through age 26 in Michigan, if I need them. I
think this policy needs to be changed for students like me who need to be successful in

Speaker: Commissioner Lewis
Thank you, Nick. Did we have any questions?

                    Detroit Listening Session Transcript (Rough Edits)                         11
                                    December 2, 2010
Speaker: Panelist
Did high school give you enough information about who to talk to? Did they give you
enough information about college? Did they help you think about how you might go to

Speaker: Mr. Nicholas Gammicchia
Yes, my parents.

Speaker: Panelist
Your parents and your teachers helped you?

Speaker: Mr. Nicholas Gammicchia

Speaker: Commissioner Lewis
Thank you, very much, Nick. Nice to meet you and thank you for your comments.
 [ APPLAUSE ] Thank you. We are experiencing momentary technical difficulties. We
will pause for just a minute to work on the timer issue. We have on deck Lynne and
Isaac. If you want to come up to the stage, that would be great. On deck, we have Mrs.
Paulette Duggins who will speak after Lynne and Isaac.

Speaker: Dr. Lynne Tamor
Hi, everyone and Commissioner Lewis. My name is Lynne Tamor, but I am here today
speaking on behalf of my son, Isaac Sugar, under his supervision. He will let me know if
I say anything he does not think is right. Isaac cannot speak.

I have a lot of disabilities. I have major intellectual disabilities. I don't see so well. I have
a lot of problems with growth and fine motor skills. I cannot chew food or walk real well.
I also do not have much language, even though I understand an awful lot.

Saying what I want to say is really hard. I use some pictures and a few signs, but it is
frustrating, especially with anyone besides Lewis, my support person or my family. It is
been especially hard because I am very sociable and like interacting with other people
more than anything else in the world.

I started school in a segregated program for students with severe multiple disabilities
when I was 2 and a half. When I was 6, I moved to my neighborhood school. I had good
teachers and not so good teachers, but mostly really good support staff. I made lots of
friends, school friends, and was what they call, fully included.

Last June, my class graduated from high school. I got a medal for being in the top 10%
of my class according to my grade, but I got a certificate of completion. I think that was
fair. My school friends went away to college except for a few friends with disabilities.

Now, we are together in a new post-secondary program. It's awful. The place looks like
an institution, bare walls, uncomfortable tables and chairs, and even a padded cell right

                    Detroit Listening Session Transcript (Rough Edits)                        12
                                    December 2, 2010
in the middle of the main hallway. The few decorations are polka dots and fat little
seahorses. They look just right for preschool, but my program has 16 students, 13 of us
are guys and we're all between 18 and 26 years old. We are not babies.

Even though one of my classmates uses a power chair and head switches because she
cannot use her hands very well, the program is not really wheelchair accessible, even
though they design the space just for us. Instead of using the main entrance to the
building we are in, we go in the backdoor past the dumpster. Of course, none of that
would be important if the program was good. It isn't. They just put in their own
sheltered workshop.

I guess so we can transition to a real sheltered workshop when we age out of the
program. I have a community job dusting the pews in an empty church, even though the
vocational test they gave me said I was very social and should have a job that build on
my social skills. I cannot even see dust, if there is any, which I doubt. [ LAUGHING ]

Our community experiences are going in groups to restaurants, to supermarkets and
bowling. Restaurants are a pain because I cannot eat the food and any way, my parents
dragged me to enough restaurants, although they do it less than before because they
know I do not like restaurants. I hate supermarkets, but go a lot with my parents and
sometimes with my PA. It is fun with my PA. I really don't want to go with a school
group. I love bowling, so that is okay, but I would rather go with my friends or my PA
and his friends or even my family.

The aids for school take all the fun out of it by nagging everybody about behavior. They
also do not let us fool around. This is ridiculous. Some of my friends are refusing to go.
They would rather stay home and watch TV. I still like to go because I like being with
people, but I could learn so much and am hardly learning anything.

I think that ADD should work very hard to get other agencies like the Education
Department, community health and vocational rehab departments to work together to
help young adults like me have a good life when we are growing up like we had in
school. Beside kids like me, they should help the kids that did not have a good
experience in school, still have a grown-up life that is good.

I think a lot of people, especially education people but even some parents need help
having a picture of a good life for a person with disabilities. ADD could help with that,
too. They could make good videos and displays and get them out to people who need to
see them. My mom and dad read a lot and go to a lot of meetings. I am tired of hearing
them talk about how things should be, when meanwhile nothing happens except what
my parents and Lewis can do on their own.

What about kids that do not have parents or a PA like mine? What happens to me when
my parents cannot do this anymore and Lewis has moved onto a job where he can make
enough money to live on. Thank you.

                   Detroit Listening Session Transcript (Rough Edits)                     13
                                   December 2, 2010
Speaker: Commissioner Lewis
Thank you. [ APPLAUSE ]

Speaker: Panelist
Isaac, you have described a national injustice that is spoken by many self advocates. We
really do appreciate that. It does seem that we have worked pretty hard in our schools to
make people feel like a part of the community and prepare them to be part of that
community and then deny them access to that.

As you were talking about the need to set new expectations in society, I think -- I am an
old guy, so back in the late 60s and 70s, I remember well the exposes’ of life in
institutions. We sort of turn that round and much of what we talk about in the
community are the positive stories. I wonder to what extent you think we have really
oversold something and we need to tend to public awareness of the bleak nature of
many people's lives, not in institutions, but what we call the community?

Speaker: Dr. Lynne Tamor
Yes, I think you are right. I think it is particularly true in our experience among the
older people, older than Isaac, who have been in the group home system. We are really
dismayed at the lack of vision, particularly in the school, but in vocational rehab, his
service provider is great, but they are tiny and stretched.

Speaker: Panelist
Way to go. Thank you, very much. [APPLAUSE ]

Speaker: Commissioner Lewis
Thank you, Isaac. If we could please have Mrs. Paulette Duggins with Mrs. Marge
Barnheiser on deck. Do we have Mrs. Duggins in the room? Okay, Marge Barnheiser?
Are we in the room? There we go. I apologize, we did not give you enough notice. We
will have Jeffrey Cohen on deck.

Speaker: Ms. Marge Barnheiser
Good morning and thank you for this opportunity. My name is Marge Barnheiser. I'm a
member of the Consumer Advocacy Committee Nisonger Center at the Ohio State
University. I am the program director for the Down Syndrome Association of Central
Ohio. Most importantly, I am the parent of two young adults, one of whom has Down

I would like to address the need for expanded and ongoing education of the healthcare
community with regard to supporting those with disabilities. Studies reflect the lack of
preparedness of healthcare professionals in the delivery of a diagnosis related to a
disability. Twenty five years ago, when my daughter was born, I was told she might have
Down syndrome and they would let me know after some tests and then I was left alone,
no information and no support.

Flash forward 25 years, and, sadly, the stories I hear from new parents is quite the same.
Information given to parents by the medical community, the time is outdated and

                   Detroit Listening Session Transcript (Rough Edits)                   14
                                   December 2, 2010
inaccurate. The impact of these inaccuracies or the lack of current information is
immeasurable and can result in devastating life changing decisions. Given strictly
medical information related to the challenges that may or may not be in store for their
child, parents are often left with a bleak view of the future of their child, their vision for
their future is diminished to a worst-case scenario, rather than one of hope.

Improvements also need to be made in providing families with community information
for families support when the initial diagnosis is given. Even when medical issues are
addressed appropriately, parents often have questions related to their child and their
family's future, sibling issues, financial and education concerns, family impact and
much more. These are areas that the healthcare community is often ill-equipped to

Collaboration with the disability community is essential in providing the best care for
the family, as a whole. Possible solutions for the shortcomings include expanded and
on-going training for future and current healthcare providers, specifically related to the
delivery of a disability diagnosis. The National Down Syndrome Society developed a
medical outreach program called Changing Lives in an effort to educate the medical
community in best practice for delivering a diagnosis of Down Syndrome.

The program involves providing information with regard to current research, while the
changing lives program was based on research related to Down Syndrome, the intent
and approach is not disability-specific and could be used as a model for any diagnosis.
Developing and building relationships between medical professionals and disability
organizations to nurture communication and share information would result in
improved support of families based on diagnosis related to disabilities. Taking steps to
make advances and community support of families who have a child with a disability
beginning at the time of diagnosis will provide the groundwork for a brighter future,
brighter vision for the future of each child. Thank you. Thank you.

Speaker: Commissioner Lewis
Thank you. That is terrific testimony on an issue that I think we are really aware of what
the needs that are out there and am hopeful that the Affordable Care Act has a clause
that addresses this issue. I think that is recognition of what you are proposing.

Speaker: Panelist
You have offered us a model for what you are saying is the Changing Lives program that
has been useful for Down syndrome could be useful for many other conditions. Could
you tell us more about what you find is, essentially, the essence of the success for that?
What is it that is needed in order to help providers become more aware of the specific

Speaker: Mrs. Marge Barnheiser
I think, basically, it is having the training. I do not think they are trained in their
education and the delivery of a diagnosis, how best to approach that and how best to
handle the situation. I think having the most current research is an absolutely critical

                    Detroit Listening Session Transcript (Rough Edits)                       15
                                    December 2, 2010
piece right now. Prenatal testing and that sort of thing, parents are making life-changing
decisions based on the information that physicians are giving them and if they do not
have the most current research available, those decisions could be made in error. Thank
you, very much.

Speaker: Commissioner Lewis
Next up we have Mr. Jeffrey Cohen. I want to check in on our childhood group and see if
any of these individuals have arrived, Mr. Carl Hengstebeck? Mrs. Paulette Duggins?
Mrs. Marcie Lipsitt or Miss Theresa Squires? We will complete the childhood section
with Mr. Cohen's remarks and then take a quick break.

Speaker: Mr. Jeffrey Cohen
Good morning, everyone. My name is Jeffrey Cohen and I am currently the director of
government affairs for the National Fragile X Foundation and am also a resident of West
Bloomfield, Michigan, but, by far, my most important title in life is a father of two adult
children with Fragile X syndrome.

On behalf of the National Fragile X Foundation and the approximate 1 million
Americans who have or are at risk of developing Fragile X-associated disorder, I want to
thank Commissioner Lewis and her team for allowing me the opportunity to participate
in today's Summit.

I also speak today on behalf of the collaboration to promote self-determination, a
network of 13 national organizations of which the National Fragile X Foundation is a
founding partner. They are committed to public policy reform aimed at implementing
the economic advancement and optimal independence of individuals with intellectual
and developmental disabilities.

I am here today to discuss two areas that I believe merit critical prioritization by the
federal government, in general, and, specifically, by the Administration on
Developmental Disabilities. These are inclusive education of youth with intellectual and
developmental disabilities in the creation of a seamless and effective support to
transition youth with significant disabilities into adulthood.

As you are aware, as you might be aware, Fragile X syndrome is linked to a mutation on
the X chromosome and is the most common inherited form of intellectual disabilities.
Over 100,000 Americans have Fragile X syndrome Over 1 million Americans carry the
mutation on their Fragile X gene that makes them at risk of having or developing a
Fragile X-associated disorder.

My twins, Allison and Joshua were both diagnosed with Fragile X syndrome at age five.
They are now 21 years old. For our family, the IDEA fulfilled its promise of providing a
free, inclusive education in the least restrictive environment at our local neighborhood
school. We were blessed to have a school district and community that embraced our
family and my children, and as such, my children did have the enriching experience of
being fully included throughout their primary and secondary education.

                   Detroit Listening Session Transcript (Rough Edits)                   16
                                   December 2, 2010
Both Ally and Josh were provided with the necessary supports and services,
accommodations and modifications that allowed them to access the general curriculum
alongside their non-disabled peers. Unfortunately, now over 35 years after the passage
of IDEA, it seems that my children's experience was the exception and is not always the
rule. Across the country, over 70% of complaints filed in regional and local protection
and advocacy offices are related to IDEA enforcement.

Parents and families often lack the knowledge and power and resources and money to
fight for the rights of their children to be included in typical classroom settings and to
access the general education curriculum. Even in our so-called enlightened school
district, there were times along our journey that we had to face a roomful of naysayers, I
am sure many of you did too, who, for one reason or another, believed our kids would be
best served in segregated placements.

Without my training as an attorney, I don't know that I would have been able to face
such an onslaught. I know many families cannot and relent on the pressure that is being
brought to bear, to remove, or keep their children from inclusive placements. It is my
hope that the ADD begins to develop the vision of the future and as you begin to develop
that vision for the future, you will consider pursuing a partnership with the Department
of Education to invest, substantially, in creating the necessary infrastructure to support
a strengthen protection and advocacy system devoted to supporting all families. I
believe that is critical.

The second topic I will briefly and quickly raise is with respect to the effective transition
of youth with intellectual and developmental disabilities into postsecondary education
and integrated employment opportunities.

While my kids were educated alongside their typical peers from kindergarten through
high school, we are now faced with a stark contrast of available options for our kids, to
help them continue in their quest for independent, productive lives and to become
responsible, participating citizens within our community. While their typical peers are
off attending college, the post-high school placement options that my kids have been
presented with, and in particularly for my son, look more like the segregated placements
that we fought so hard to avoid for many years.

Speaker: Commissioner Lewis
If you could wrap up, please.

Speaker: Mr. Jeffrey Cohen
Absolutely. Let me just say that what I and my son desire, what I desire for him, and
what he desires for himself is to be a fully participating, productive, and included
member of our community and the post-high school system does not seem well-
equipped to provide that. We are encouraged that the agency on developmental
disabilities is moving in a direction to take control of that dialogue and bring all the
necessary agencies together. We are hopeful that you will succeed in that endeavor. I
and the organizations that I speak for, stand prepared to work with you side by side.
Thank you.

                   Detroit Listening Session Transcript (Rough Edits)                      17
                                   December 2, 2010
Speaker: Commissioner Lewis
Thank you. [ APPLAUSE ]

Speaker: Panelist
Just briefly, you came representing the Fragile X Syndrome Association and spoke about
the collaboration on self advocacy or self-determination. You noted a lot of things that
ADD might do. But most of what has gotten done in this country has come from the
hard work of advocates. One of the things that I am wondering is, as we develop these
various associations, and we will continue to do as genetic research is identifying more
and more syndromes, we are sort of tribalizing around rather specific disabilities and
losing a national focus on advocacy for people with developmental disabilities.

If so, if we are diminishing the power of advocacy as we do tribalize and whether there is
a role for anyone, including the Administration on Developmental Disabilities, we kind
of think about how we create a more concerted advocacy around developmental
disabilities instead of the various conditions that we are now able to identify?

Speaker: Mr. Jeffrey Cohen
It is a great question. I think advocacy is kind of like the redheaded stepchild. We spend
so much money, as a country, through the National Institutes of Health trying to find
cures and develop better tests to make diagnoses, and, yet, our experience over the last
20 -30 years is that finding cures is so much more complex than anyone ever realized.

The organizations that I work with, and my own personal philosophy for my children is
that component of advocacy is critical. While the scientists are spending all that time
behind the microscope, children are born, entering kindergarten, graduating high
school. When my kids were diagnosed with Fragile X at age 5, they said, give us five
years and we will make it go away, we will have that cure for you, don't worry about it.
So, then, they entered kindergarten, middle school, and high school, and now here we
are on the precipice of adulthood.

I think that advocacy is one of the most valuable skills that can be taught to individuals
with developmental disabilities. I also think that we need to provide more of those
services. As I was listening to everyone talk about the importance of advocacy, we have
elevated the right to counsel, to constitutional importance in the case of someone who is
accused of a crime, and our system does a really good job of making sure that people
who find themselves facing the challenges of our system and our laws have the
constitutional right to that kind of counsel.

So often, parents participating in the IAP process or beyond, are not aware of protection
and advocacy and their strapped and stretched so thin. I would really like to see the
right to access those kinds of advocacy services significantly enhanced. So many parents
do not have the wherewithal. I feel fortunate and at the same time guilty that I was able
to bring to bear my legal training in this quest. I tell you, really needed it, and people
who do not have it, suffer. Thank you, very much.

                   Detroit Listening Session Transcript (Rough Edits)                   18
                                   December 2, 2010
Moderator: Kate Fialkowski
Thank you. [APPLAUSE ] Okay, it is 10:30. We are going to take a quick break. We will
reconvene at 10:50. Please make yourselves comfortable. Speak to one another and we
will see you back ready to go at 10:50. Thank you.

Adulthood (morning)

Moderator: Kate Fialkowski
Thank you. Hello. This is your three minute warning, your three minute warning.
Okay, if we could get everybody back in the room and gathered so that we can get
started. If we could get our panelists backed up here. Okay, ladies and gentlemen, we
are going to get started. Is the panel ready? Okay. Great. We are moving onto our next
testimony topic. The next category is adulthood.

ADD proposed the following question in this area In the future, what will the most
important contributing factors to ensure that adults with developmental disabilities
achieved equality of opportunity, independent living, economic self-sufficiency and full
participation as valued members of inclusive, integrated communities? Which critical
issues must be prioritized, access to healthcare? Employment? Support? Services?
Technology? Housing? Transportation or others?

Commissioner, would you like to call the first two speakers, please?

Speaker: Commissioner Lewis
Welcome back. If we could please have Mr. Andrew Gammicchia join us up here at the
podium with Mr. Ray Schuholtz on deck . Good morning.

Speaker: Mr. Andrew Gammicchia
Good morning Commissioner Lewis and distinguished panel members. I am Andrew
Gammicchia, President of L.E.A.N. on Us from Shelby Township, Michigan and the
proud parent of two sons, one whom you have already heard testify today.

As a parent of a young man living with autism, and currently a school liaison officer with
23-years experience in law enforcement, I see many students, including our son, not
understood by those who should be providing the appropriate response. I would like to
ask today that the Administration on Developmental Disabilities create a national
committee to address safety concerns that often affect the quality of life for many
individuals with disabilities.

In the document I have provided for you, you will find several resources, our
organization and you will also find information on two trainings we have assisted in
developing specifically to address the needs in this area.

We still do not have a national training that provides for first responders to be educated
in providing appropriate response to individuals with intellectual disabilities, nor do we
have a national training for individuals with intellectual disabilities or caregivers or

                   Detroit Listening Session Transcript (Rough Edits)                    19
                                   December 2, 2010
other natural circle of support members to be appropriately prepared for emergency
situations or to report victimization and abuse.

Additionally, we have seen much need for healthy mentoring programs within the
education process to prevent victimization and to recognize what abuse and neglect is
and provide individual seeking a self determine life within their communities, giving
them safe options to do so.

Due to lack of resources in this area, we have seen many individuals fall into harm's way
across the country. We are seeing individuals with developmental disabilities being
accused of crimes they often do not have the ability or intent to commit or the
knowledge that their actions may even have criminal nature. For those so accused, there
is often no representation available to a system, because most protection and advocacy
organizations do not assist those accused of crimes.

There is a need for data collection within police incident reports to show that a crime
victim has a disability. There is currently no such demographic provided to law
enforcement and we feel this is needed for both victim services and prevention
programs. This is also an easy solution of just adding the demographic to report that
over 17,000 police agencies complete daily. This would also allow us to track those
education preparedness and prevention programs are being effective and those
currently -- I am sorry that - those currently vulnerable are provided appropriate
support needed in these areas.

I would like to express my appreciation for being allowed to speak to you today, and feel
free to contact me if you have any questions. Thank you, very much.

Speaker: Commissioner Lewis

Speaker: Panelist
You say you want ADD to help you establish a national organization?

Speaker: Mr. Andrew Gammicchia
To help establish a national -- a committee to establish a national training for law
enforcement and first responders.

Speaker: Panelist
Who else could you collaborate with?

Speaker: Mr. Andrew Gammicchia
In the booklet I gave you a copy of the last thing we were involved with, which was the
International Association of Chief of Police National Policy Summit. We set up a summit
to discuss these issues. We could definitely get some feedback and some good
recommendations on where we can go from there. Thank you.

                   Detroit Listening Session Transcript (Rough Edits)                     20
                                   December 2, 2010
Speaker: Panelist
Thank you, very much.

Speaker: Commissioner Lewis
Thank you. [ APPLAUSE ] Mr. Ray Schuholtz, if you could join us. We have Mrs. Rita
Chambers-Bird on deck.

Speaker: Mr. Ray Schuholtz
Hi. Nice to see you. I want to thank the panelists for inviting me and taking the time to
hear all of our stories. I've heard some real good testimonies, as far as this morning.

I want to tell you a little about me. I am Ray Schuholtz and was in an institution when I
was a child. Those days were horrible days. It is no way to live. In Michigan, all of the
institutions are closed and want to see them closed and the other states are working on
that too.

I have had some wonderful, loving, caring parents that believed in me and great
supports. I have great family out there that is working with me now and am also working
as a peer mentor in my own community living services and I'm on the board, a member
and involved with my own community.

I have good quality of life and self-determination, is where it's at. Everyone should live
with self determination and keep the budget flowing, because I think for people to live a
good quality life, you need to keep the dollars flowing. If you cut the dollars, people will
be hurt. It is important. I think Medicaid is important to keep that going, too.

To make it short, let me see if there is anything else I can talk about. First run programs
back then, I did not have control over my own keys. I have my own keys now and I can
have my own name on my own lease. I have my own car I have worked for and keep it

It is very important to advocate for other people. We need to get more advocates out
there and peer mentors. Peer mentors is brand new here in Michigan for those with
developmental disabilities. I think that needs to keep going too, it is very, very
important to keep the self advocacy thing going. I wanted to bring that up, too.

The "R" word, as a matter of fact, retardation from back years ago, I am finally glad they
changed that law, finally. I also do People First language in training for caregivers out
there in my own city. Teaching them the language, how we talk to people. People
shouldn't be looked at as a disability. To me, everybody is somebody and everybody is a

I am also a local leader with the Michigan Partners of Freedom. That is about all I have
to say. I want to say to keep the dollars going and say thanks to my friends. Keep it
going. [ APPLAUSE ]

                   Detroit Listening Session Transcript (Rough Edits)                     21
                                   December 2, 2010
Speaker: Commissioner Lewis
Thank you for your great testimony. I have a question. How do you think that ADD's
administration can help you make that successful for other people with disabilities
doing the same things you have done in your life?

Speaker: Mr. Ray Schuholtz
It is having more advocates going up there to the hearing, stuff like that, to be listened
to. Also, to be getting mailings from people that get supports to maybe be able to help in
that area. Sometimes I go with a group of people, I travel to different states. That is
important because I want to see down the road that institutions in other states are
closed too. That is where it is at.

Speaker: Commissioner Lewis
Thanks. We have Mrs. Rita Chambers-Bird and then Mr. John Toppi on deck.

Speaker: Mrs. Rita Chambers-Bird
My name is Rita Chambers-Bird. I am the parent and guardian of my 39-year-old
developmentally disabled daughter. I have to say after hearing your opening comments,
I felt a little like slinking out the back door. I am probably one of those old-fashioned
parents you met at an earlier meeting. So, rather than the comments I intended to give, [
LAUGHING ]I have changed a little.

I would like to give you a historic perspective. Over three decades ago, I served on the
Louisiana State DD council for two terms. We built and established the first six group
homes in the state. I served on the local ARC board, organized fundraisers for United
Cerebral Palsy, helped to organize a parent advocacy group that worked with the local
school system to develop their programs. I helped construct the first legislation
establishing handicapped parking almost four decades ago.

What did we, as parents, really want back then? We wanted our children safe, happy and
healthy. We wanted to build a system that really cared about our children, a system
committed to addressing their needs. That system would provide enriching, wholesome,
therapeutic services, promoting quality of life and providing services appropriate to
their functioning level, cognitive ability and medical conditions.

Most of us probably still share those same goals. My developmentally disabled daughter,
who is named Danni, we have learned quite a bit on our journey together.
One thing is there is a difference between a cure and healing. Her cerebral palsy will
probably, realistically not be cured during our lifetime, but healing has taken place. She
is active, happy, content, well adjusted, extremely personable and outgoing. She enjoys
her life and enjoys total community inclusion while using an array of services, some of
which are delivered in segregated settings.

She uses a wheelchair. She has bi-lateral leg braces, she has a support brace on the left
arm, she has more, but somewhat limited use in the right hand and arm. At the day
program she attends, she gets physical, occupational and speech therapy, provided in an
appropriate scope, duration and frequency to help support or functioning. She walks in

                   Detroit Listening Session Transcript (Rough Edits)                      22
                                   December 2, 2010
a Rifton walker, stands in an adult stander, uses a new step exerciser, gives range of
motion exercises and pool exercises at the local aquatic center. She goes shopping, to
movies, to local theatrical performances, visits museums, zoos, and athletic events. She's
goes bowling and to garage sales. She visits farmer's markets, the local mall, grocery
stores, attends picnics, birthday parties, enjoys the beach and goes to church.

She works in supported employment, shredding medical records. She rolls change at a
local car wash that is owned by a family member. She assists a sitter who cares for a 4-
month-old infant. That is her favorite job. She has also rode on the back of a 4,000-
pound elephant. She enjoys collecting colorful watches, music and movie videos. She
has learned to operate a touch screen computer, also available through the day program.
She owns and can operate her own television, video player, remote control, personal
DVD, CD player, camera and Nintendo. She grows and tends her how tomato plants,
watches QVC and the Food Network, her two favorite channels, and has her personal
subscription to the Food Network Magazine.

Over 40 years ago, the story was much different. There were no organized programs. We
traveled 50 miles for PT services. It was a six-hour drive to a quality assessment and
evaluation center. The local orthopedist did not want to treat her. He was interested in
sports medicine. The neurologist suggested that she be placed in a residential facility
because we would not be able to take care of her at home.

Thankfully, I didn't listen. Danni has developed language skills. She can count to 10. She
feeds herself. She is potty trained and she continues to gain strength and skills,
primarily, through services delivered at the day program. So regardless of the
philosophic view, there are quality, congregated settings and those that are not quality
should not be tolerated. I think that is why we have gotten to where we are.

You ask what you might do. Two things: Recognize the choice of the consumer, it is a
very valuable. The second thing is that you support the continuation of an array of
appropriate services and settings. Thank you. [ APPLAUSE ]

Speaker: Commissioner Lewis
Can you stay with us for a minute? Thank you so much for your testimony and for
acknowledging that you changed your testimony midstream. You told us really
wonderful aspects of your daughter's life. I would like to ask a question more specifically
to you that I think a whole generation, in a sense, of parents and professionals are really
struggling with.

My question is, how do we as people who have been around for a longer period of time,
enjoin with envisioning this new future? What could ADD do that might help people
from a diverse array of experiences, I'm thinking now, generationally, I am thinking of
what you have seen over four decades, what some of us from other perspectives have
seen, how can we bring this together, knowing that it is going to be a different world
than what we were envisioning into the future previously?

                   Detroit Listening Session Transcript (Rough Edits)                   23
                                   December 2, 2010
Speaker: Mrs. Rita Chambers-Bird
That is an excellent question. A couple of comments. I think I had that vision for my
daughter 40 years ago, because I did not accept what I was being told. The other thing
that is extremely important is to recognize one size does not fit all. There are different
perspectives. There are different needs, preferences.

Just as I would respect anyone in this room that decided they did not want their child or
themselves to live and work in congregated settings, I should get the same respect. My
daughter should get the same respect. If you knew Danni, you would know that she
makes her wishes very well-known. There is no doubt she is happy and she is enjoying
life as she has it now. If that were to disappear tomorrow, her quality of life would go
down the drain. I think that is something that you should hear. I hope you would
understand. Thank you. [ APPLAUSE ]

Speaker: Commissioner Lewis
If we could please have Mr. John Toppi and Mrs. Pamela McMillan on deck.

Speaker: Mr. John Toppi
Hi. My name is John Toppi. I am here to tell you about my life. I was in an institution at
a very young age. I could not have pets or I could not decorate the way I wanted to.
It was not a very nice place and in the 90s they got a grant and were asking for some
volunteers. So I said, sign me up, I want to start my own life. I got my own apartment.

There are some people in institutions that don't need to be there and they don't like it.
They need to get out in the public where they belong. I use to be in a day program, but
there is no more day program for me. I got my own business working in my apartment,
it's called Toppi's Creative Cards and Crafts. I make candies and Christmas trees and sell

I know from my heart that there are some people in group homes and institutions that
don't like it there. They don't need to be there. So, I appreciate what you do, and your
part to get them out in the public so they could live their own life. People just need to be
happy like you and me. One more thing that I want to add, which I forgot, is they told
me that because I was in a wheelchair, I could not get married, but I proved them

Speaker: Commissioner Lewis
Thank you, very much.

Speaker: Mr. John Toppi
You're welcome.

Speaker: Panelist
You have lived the changes in the developmental disability service system over the last
50 or 60 years. It is really a remarkable story. The institutions are now closed in
Michigan and all of the group homes. [ APPLAUSE ]

                   Detroit Listening Session Transcript (Rough Edits)                        24
                                   December 2, 2010
Speaker: Mr. John Toppi
That is the way I want to see it. I appreciate that they passed the law to keep the
institutions closed for now.

Speaker: Panelist
One thing I would like to ask you is what are the supports that are really important to
you, for you to live this remarkable life as a successful renter, business owner, neighbor,
husband, what are the things that help you do that so successfully?

Speaker: Mr. John Toppi
Well, as a business owner, I think is I could be my own boss, just being in my own
apartment gives me a lot more freedom to do what I can do, which I could never have
done in the institutions. I could not decorate the way I wanted to, like the way I can now
in my own apartment. I can decorate the apartment anyway I want to.

Speaker: Panelist
Does anybody help you with your apartment or your business?

Speaker: Mr. John Toppi
No. I hire my own staff. I hire some people to help me with my business and everything.
I do volunteer. [He has a lot of volunteers.] I do a lot of speaking engagements.

Speaker: Panelist
You do a wonderful job. Thank you, so much.

Speaker: Commissioner Lewis
If we could please have Mrs. Pamela McMillan, and then we have Mr. Ed Diegel on deck.

Speaker: Mrs. Pamela McMillan
Hello. I am Pamela McMillan and thank you for this opportunity to speak on behalf of
my family, my friends and my students. I have been a special educator for 27 years.
Presently, I am at the high school level in the public schools, which I do believe is the
closest thing you will get to the model programs, if you would like to come see it
someday, despite the disparity in our economy.

I am also the director of a special needs ministry for 10-years at a local mega-church
that serves over 150 families with developmental disabilities. I am sure it is no surprise
to you that it is hard to find a church that welcomes those with disabilities. I have
literally grown up with my students, my own children, my best friends, experiencing
these blessings and challenges together.

Today, I would like to present a single solution to the growing problems of appropriate
and least restrictive housing for adults with DD. Hopefully, a starting place to pave the
way for change. The model I am suggesting and move towards will refer to and is called
Canton Manor, which is available in Canton, Michigan.

                   Detroit Listening Session Transcript (Rough Edits)                       25
                                   December 2, 2010
This is not fictitious but a very probable and viable solution to this growing need. The
idea behind this model is to create an integrated, independent community for adults
both with and without disabilities within the same complex. Try to visualize this option
with me as I described the plan.

Canton Manor is a complex that will be available for individuals over the age of 25, who
want to live more on their own. This complex will serve the needs of those who have
developmental disabilities and who require some assistance and provide opportunities
to live as independent as possible while living in an integrated environment, including
those without disabilities, with a strong emphasis on adults over 50 and college/student

By serving this particular group, we can create an excellent living environment,
including a social, family like atmosphere and active lifestyle for all of our tenants. Our
services include full-time apartment living options at low cost, private and semi-private,
handicap accessible rooms, staff for educational, entertainment and recreational

The complex will be equipped to provide integrated living for a total of apartments,
including one bedroom, bath, living room and kitchen. Also, options for tenants will be
separate living and socializing areas, exercise room, laundry room, classroom settings
for culinary arts, cosmetology, fitness, home living, photography, computers and many,
many other options, including micro-business opportunities.

Our goal is to meet the social, physical and mental recreational, educational, and
vocational needs of all of our tenants. Canton Manor will provide an apartment style
living for individuals with mild or any developmental disabilities alongside individuals
with average intelligence. The organization will be certified as a 501-3 non-profit

We are dedicated to helping those with developmental disabilities to live their life to the
fullest with creating an integrated family atmosphere that provides a positive feel for a
better tomorrow and continually focuses on creating the maximum level of
independence while living in integrated communities. We strive to offer a community
that promotes self-respect, independent and improve the quality of life for all of our

Because of the location of this complex, each resident or tenant would have access to
public transportation as well as a parking spot if they have a driver's license. The large
adjacent parking area allows for visitors, handicap accessible vans would be available for
shopping trips, community trips, and all types of vocational needs. Employment
opportunities will be available and staff will search for local businesses in the area.
Volunteerism will be an integral part of this community as well as mentorship
opportunities. Please help us to provide more appropriate living options for all people,
because all people matter. Thank you. [ APPLAUSE ]

                   Detroit Listening Session Transcript (Rough Edits)                    26
                                   December 2, 2010
Speaker: Commissioner Lewis

Speaker: Panelist
I think like so many models that we have proposed over the years that are the grand
solution, we always run into the likelihood that individuals have very different
perspectives on what, where and how they will live out their lives.

I am wondering to what extent that ideal of freedom, choice, respect, dignity can be
honored in a place that is sort of built around the notion that this is a place for people
with disabilities, as opposed to a place of for all?

Speaker: Mrs. Pamela McMillan
We have seen that struggle in many intentional communities over the years that balance
between people being people versus people being people with disabilities. I think that
the important thing is -- what is happening is we are restricting the environment for
adults with disabilities by providing only certain things for them. As much as I 100%
agree with the institutionalization and do not want that to come back, in any regard I
feel that we fall short in giving enough options. I speak to families all the time, all the
time, students all the time about what their options are and we prepare them for the
future and then we let them hang to dry.

I am looking for options. I am looking for alternatives for our adults, not just a group
home, a ten year waiting list, in Detroit, not in the community that they may have
chosen to live in or not in their local area. I think our families are pleading and asking
for more options. This is one that I am hoping we'll provide. Anyone that I talk to say
there is nothing like it. Anyone I talk it is saying, how do we get involved? How do we
help? The only people I really encounter are people in this realm. Okay?

Speaker: Panelist
Sure, thank you.

Speaker: Commissioner Lewis
Thank you, very much. We are running on a very tight time schedule. So, if we could
please have Mr. Ed Diegel up on the stage and then Mrs. Denise King on deck. Thank

Speaker: Mr. Ed Diegel
Good morning. Thank you, so much. Thank you for visiting with us and inviting us here
and welcome to Wayne County. My name is Ed Diegel. Our oldest daughter, Deb is 44.
She was born with spina bifida. She has both physical and intellectual disabilities.

At the age of four months, we were told that the best solution would be for her to go to a
nursing home because surgery would not work any longer. My wife stood up to that
suggestion and Deb was able to stay with us. Her situation improved. When Deb was
transitioning from the Skill Center at age 26, the transition specialist told us that with
her physical and mental disabilities, we should plan on her staying with us for the rest of

                   Detroit Listening Session Transcript (Rough Edits)                        27
                                   December 2, 2010
her life, that we should probably find a volunteer organization that she might be able to
spend a couple of hours, maybe a library, for a couple of hours a week with.

Today, Deb lives in a apartment. She has been living in an apartment for the past 18
years and with a roommate for the past 6 years. She has run DJ shredding, which is a
micro-enterprise, which is successful enough to allow her to hirer two sub contractors in
addition to herself, I'll be it at pennies an hour. She is also, by the way, the oldest Walker
raiser at the state Special Olympics Summer team. She has exceeded expectations and
opinions from the communities, the helping and advocating communities that we have
looked to.

My wife and I have been involved with Special Olympics for 30 years. We have also--I
have also served on the board of Community Opportunities Center, which is a non-profit
housing organization.

The thing that I wanted to talk about today is that when my wife and I envision a future
in which Deb and her friends are actively engaged in the community in all aspects of
their lives, notice I did not say that she should be actively involved in the community, as
if there is only one community that we must all be striving to join. Instead, she, like the
rest of us, belongs to many communities. Community describes how we live, not where
we live or in what facility.

Deb belongs to her apartment community, workshop community, Special Olympics
community, the Diegel family community, the church community. Some of her friends
choose to live in a community with as many as 15 others. Some live in a family
community just in the family home. Two of her friends have belonged to a paraplegic

Our hope for Deb and her friends, is that where ever she is, she will have had a voice in
the choice to be there and that there will be an expectation that each of her communities
will provide her with supportive, caring friends and acquaintances and rewarding
experiences. When states and counties allow individuals to choose the communities in
which they want to participate, each person has the opportunity to be engage as he or
she is capable, where he or she desires.

An artificial criteria such as the size of the facility, perceived legal restrictions, biases
against day programs and so on, all fall away. This approach allows each individual with
his or her family and supports to prioritize what is most important, whether it is
healthcare, employment or housing. There is no cookie-cutter, one size fits all solution

In this environment, good governance would not spend hundreds of thousands of
dollars working to reverse supportive guardianships and would not work to close large
homes regardless of quality and the desires of the residents to continue to live there and
it would not work to limit day programs for persons who chose them when 60 out of 88
persons rank these services as high, meaning important. Good governance would direct

                    Detroit Listening Session Transcript (Rough Edits)                     28
                                    December 2, 2010
funds from the above costly initiatives to meet unmet needs reported by 35% of
respondents to a recent survey.

It would find a way to reward quality providers and weed out those who are not and
would develop techniques for building community support from local churches,
fraternal organizations, and other organizations. And finally it would probably increase
direct care salaries. To paraphrase Henry Newen: “The objective is to care for and except
persons with developmental disabilities where they are and the objective is not to try to
cure them by force or well.”

My hope is that ADD in the future will include a respect the choices of programs for my
daughter, which are possibly more conservative than others. We have an obligation to
support those around the leading edge of the belt curve but the choices of the persons in
the middle and those at the far side also demand that same respect. Thank you.
[Applause ]

Speaker: Panelist
How can we get the community to help us? What kind of training can we have inside our

Speaker: Mr. Ed Diegel
I think the answer is that we need to be tolerant of each other first of all. We spending a
lot of time in the state of Michigan, one example is guardianship, we spend a lot of
money in the state of Michigan attempting to convince persons who are good guardians
and some people do not think there is such a thing, I know. To relinquish their
guardianship. When that money could be spent listening to each other, and being more
accommodating of the entire span group of people that we are dealing with.

My daughter, at one point for eight years worked in a packaging factory, and she did
well. It was an enclave. When that business closed, she transferred to a workshop.
Subsequently the workshop helped her develop a micro-enterprise. She has an impaired
left-hand, she cannot do piecework easily, but she can shred and so DJ Shredding it was.
So the point of this is all the other micro- enterprises was arts and crafts. Debbie's was
shredding, the only other micro enterprise was shredding. So people accommodated

Okay. We had an opportunity a while ago for her to move her business into a
commercial building. When we looked at it and consider the fact, and these are Deb's
words, our words were, how is she going to get back and forth who will provide the
support and so forth? So an advocate at one edge of this thing, would say, get her in the
community. We'll put one on one there, we are going to do this. Well Deb will be more
comfortable and more fulfilled working in the workshop then where the staffing ratio
might be 1 to 15 or 15 to 1 than a one to one situation in a commercial building.

That does not say that a person should not have the right to be in a commercial building
but it does say that the providers and the MCMs who are offering programs and
supports should not let their own ideology rule what the individuals desire and the

                   Detroit Listening Session Transcript (Rough Edits)                    29
                                   December 2, 2010
supports that individuals feel that they need. Unfortunately there is a lot that goes on in
Wayne County. And that is a topic for another day. Thank you.

Speaker: Commissioner Lewis
Thank you very much. [Applause ] If we could, please, have Mrs. Denise King. And then
we have Mrs. Jill Barker on deck.

Speaker: Mrs. Denise King
Hello. How are you doing? I don't know if it's morning or afternoon but I think it's
afternoon. So, good afternoon everyone. Thank you for allowing this opportunity for us
all to speak. My name is Denise King and I am the executive director of an organization
known as the Community Opportunity Center which Ed Diegel spoke of. His daughter is
part of our corporation.

We provide housing to nearly 100 people with developmental disabilities and an array of
different types of housing. I want to say that beyond an administrator, I've been with the
organization for 30 plus years. So, those folks that are part of that corporation are truly
an extension of my family. I care deeply about their welfare and also their well-being.
With that said let me share a few thoughts.

In Wayne County, we work with three different agencies. What we find is that the
funding, there is no clear criteria on how funding is determined. I think whatever system
is identified we should be looking at true costs and individual needs should always be
taken into consideration. This is not the case.

This year's deficit is over $300,000 and each year we struggle to do enough fundraising
to cover operating expenses. With each cut we assume many, the men and women with
developmental disabilities that we support, unfortunately are affected. Our true cost,
when you look at housing and those types of expenses, never change. And I say our
expenses, theirs as well from their apartments.

Unfortunately, things such as staffing and the different supports that we are providing
to the folks have to be reduced when we lose dollars and we can't meet all of our
fundraising needs. So we need to have a secure infrastructure in place to ensure that
viable, desirable and needed supports are appropriately funded.

Secondly, the time a persona spends away from their home is considered a leave of
absence, otherwise known as LOA. The funding to the respective homes ceases when a
person is on a leave of absence. Unfortunately, housing and other costs do not change,
when someone leaves or goes on a vacation, or spend an overnight visit with their
family. Unfortunately, when those dollars are eliminated, that also has a negative effect
on the organization and subsequently the people we are supporting.

In the last two years we have lost $283,000 that could have otherwise been used to
better support the people that we have affiliated with our organization. Unfortunately,
the other part of that is I think some of our families, knowing the loss that is incurred by
our corporation have a sense of guilt every time they are coming to take their loved one

                   Detroit Listening Session Transcript (Rough Edits)                    30
                                   December 2, 2010
home for a weekend or an overnight visit. That should not be the case. So what should
be done?

I think there should be a reasonable number of leave of absence that should be
considered and we hope that something of that sort will someday come to fruition.
Throughout our corporation, we have 23 homes, two of which involved more than six
people. There is a strong push to close larger homes in Michigan. While small homes
and apartment living may be desirable to other people, those living in COC's larger
homes are equally as happy and live very fulfilled lives.

The staffing ratio is higher because we have more people living there so choices and
opportunities are more abundant. With recovery of the state's economy still not in sight,
breaking down larger homes into smaller 24-hour settings will be extremely costly and
should not be the priority. Rather, people should be able to choose where they wish to
live and choice and quality should be the determining factor. That is all I have to say.
Thank you. [Applause ]

Speaker: Commissioner Lewis
Did you have a question?

Speaker: Panelist
Yes. Thank you for your testimony. I was just wondering because of all the costs you
were talking about, what could ADD and other groups do to help you advocate for more
housing and helping figure out ways to make it affordable?

Speaker: Mrs. Denise King
I guess I always wonder, there are too many administrative costs in our county and our
state and the money is not being funneled down to the individuals. I know that is why
we have to do an overwhelming amount of fundraising. We want to make sure every
dollar we get goes to the individuals. It all comes to boil down to, kn0w where's the
support coming from and can money be more appropriately funded, you know, geared
towards the individuals and can we eliminate some of the administrative costs in our
state and our county. Thank you very much.

Speaker: Commissioner Lewis
If we could, please have Mrs. Jill Barker and then we have Mrs. Judith Greenbaum on

Speaker: Mrs. Jill Barker
My name is Jill Barker and I am from Ann Arbor, Michigan. I am the parent of two sons
who have profound physical and cognitive disabilities. Danny is 34 years old and Ian is
25. They are total dependent on others for their care and safety. They are unable to
communicate in any specific way. They live together now in a group home.

Both of our boys are lovable, handsome and charming young man and you are going to
have to take my word for this, they will never be independent, productive, confident,
and self-sufficient. We do not measure their worth as human beings in terms of their

                   Detroit Listening Session Transcript (Rough Edits)                   31
                                   December 2, 2010
accomplishments or lack thereof. They deserve a life that is meaningful to them with
people who appreciate them and respect them for who they are.

The prevailing ideology of advocacy organizations that are funded in part by the
Developmental Disabilities Act holds that all people with disabilities regardless of the
severity or nature of those disabilities can live in their own homes, earn a income in a
non-segregated community setting, and be fully integrated into the community. These
false assumptions, these are false assumptions to make about such a diverse group that
includes my sons.

It is disturbing to us, my husband and I, that advocates who claim to speak for people
with disabilities do not even acknowledge the existence of people like Danny and Ian.
The Michigan Developmental Disabilities Council has a policy that they will not fund
any programs or disability only setting. Nothing in the DD Act requires this, or allows it.

What it means for my sons is that they are unlikely to benefit from any projects funded
by the DD Council, because they participate in the wrong kind of programs according to
the DD Council. Advocates who receive Federal funding are actively supporting the
Michigan Department of Community Health and limiting and eventual eliminating
specialized services and residential settings including day programs, sheltered
workshops and licensed group homes that serve people with the most severe disabilities.

The DD Act, the Americans with Disabilities Act, and the Supreme Court Olmstead
decision protects the rights of individuals to services programs and activities in the most
integrated setting appropriate to their needs.

Despite that, most advocates would have us believe Olmstead protects the rights of
residences in institutional settings, to remain there if they so choose while also
protecting the rights of others to live in the community. Olmstead does not limit the size
of community settings or define specialized programs as institutional nature, but this is
how advocacy organizations and state agencies are interpreting it and this is what they
tell families.

I know that in other listing sessions, questions have come up, especially for people who
are people supporting specialized services and the question has been, how do we pay for
all of this knowing that know more money will be available?

It is costly to provide the care my sons need, but I think this is the wrong question to be
asking this group of people. We are all in the same lifeboat struggling for survival and
we are not going to tell you which one of them should be thrown overboard. If we do not
figure out how to pay for the service people need, people will suffer and die.

The same ideology that marginalizes my sons, also promotes the idea that everyone can
make their own decisions. This false assumption leads to conclusions that court-
appointed guardians are not only unnecessary but evil. The people who are often
appointed to be guardians, parents, other family members, and family friends are also

                   Detroit Listening Session Transcript (Rough Edits)                    32
                                   December 2, 2010
Grants from the Michigan DD Council have funded anti-guardianship, extensively,
offering a goal of alternatives to guardianship, but in reality for the purpose of
convincing families, never to pursue guardianship without regard to its potential
benefits. Advocates receiving federal funds actively campaign for the closure of Mount
Pleasant Center, an intermediate care facility despite opposition by many families of

The state did not give most residents or guardians the option of continuing to receive
the ICF care as Olmsted requires. Michigan Protection and Advocacy Services was
involved in this campaign but did nothing to assure these rights under Olmstead.

According to the deputy director of MDCH, at least ten people who were moved out of
Mount Pleasant Center have died. The mother of one woman warned the state
repeatedly that her daughter might not survive a move out of Mount Pleasant Center
because of her fragile health. Her daughter moved into my sons group home and died
within six weeks. As far as I know these tragedies have not been acknowledged in any
public forum by the advocacy that fought so hard to close this facility.

Speaker: Commissioner Lewis
Mrs. Barker, could you wrap up, please?

Mrs. Jill Barker
Yes, the ADD needs to thoroughly review how the DD Act funds are being used and rein
in activities that are clearly beyond scope of the DD Act and violate some of its
provisions. There is plenty for the DD Act funded programs to do for people who need
services and legal protections, devoting time, energy, and funding to eliminating
specialized programs is a questionable activity under the DD Act and harmful to people
who need those services. Thank you.

Speaker: Commissioner Lewis
Thank you. [ Applause ] Do you have a question?

Speaker: Panelist
I would like to ask a hypothetical question, I guess. What responsibility do you think the
state has to spend public money on options that are demonstrably better associated with
developmental outcomes for which that money was raised from taxpayers in order to
benefit people with disabilities?

Speaker: Mrs. Jill Barker
If you determine what you were going to spend on my son by outcomes, that they were
somehow going to be more independent or be able to do things that they cannot do now,
you would not spend any money on them. That's just the truth. So I think you have to
look, I mean, I think everybody has to be looked at individually. There is more than just
being independent and being self-sufficient that we have to guarantee a quality of life
and the care that people need.

                   Detroit Listening Session Transcript (Rough Edits)                    33
                                   December 2, 2010
Speaker: Commissioner Lewis
Okay. Thank you. If we could, please, have Mrs. Judith Greenbaum and then we have
Mr. Jan Plas on deck.

Speaker: Mrs. Judith Greenbaum
My name is Judith Greenbaum. I am the parent of a daughter with intellectual
disabilities. I am also a retired educational consultant, advocate and I have written
several books on developmental disabilities issues for parents. I would like to thank you
ADD for giving me a chance to speak today and I would like to thank the ARC and UCP
for all of their good work. However, and I am not going to say this as well as Mrs. Bird or
Mrs. Parker.

There are those of us parents who have adult children with more severe intellectual
disabilities who feel sole participation in communities would be counter-productive for
our loved ones. A satisfying and productive life can be achieved in a more protective
situation for these adults.

My daughter Susie will be 47 years old this month which makes me possibly the oldest
person in this room. Susie is a caring friend and hard worker. She has relatively severe
ID, intellectual disabilities, and anxiety disorder. Her speech is quite limited and she
cannot tell you when she does not feel well or why she is angry or upset. However, she
can make choices and is quite opinionated.

She needs someone to watch her 24-hours a day. She works in a community-based
vocational program, four days a week, five hours a day, run by the community supports
and treatment services agency in Michigan. She is in a group of four that travels from
work site to work site, in the community. Susie is very proud, very proud of her work
and would work seven days a week if she could. Work is a top priority for her and for me
as a family. In fact, when I have to make medical appointments for her and if they fall on
a workday, she will not go to them, she will say no, work.

But she cannot work in integrated setting. Her disabilities prevent her from working up
to speed and following more than two step directions. She is very distractible. Integrated
community settings are generally too noisy and chaotic for her. A solution for Susie and
others like her as a work situation similar to what she has now. Working in a protected
environment within the mainstream allows Susie to complete her work and socialize
with others in the community from secretaries to priests. Even though her work is now
totally volunteer, these are jobs she can accomplish and feel proud about. She feels very
proud about the work she is doing.

Susie lives at the St. Louis Center in Chelsea, Michigan, where 49 other people with
developmental disabilities live, I have to talk fast, I'm sorry, live in an apartment-like
setting scattered around the St. Louis Center campus. She has five other housemates in
her apartment. Her group has one direct care worker plus a roving supervisor. Since
there are other direct care worker in other apartments and other supervisors, it's easy to
mix and match the interests of the residents.

                   Detroit Listening Session Transcript (Rough Edits)                   34
                                   December 2, 2010
Susie can go to a movie, some can stay home, some can go bowling. Her boyfriend lives
across campus in another apartment and Susie often goes to visit him and his
housemates or goes over to the administrative building to hang out with the cook. She
happily walks by herself. That is so important to her to these places feeling a sense of
freedom and independence she would not have if she lived in a small house in the
community with only one direct care worker.

There she would have to have that direct care worker with her every time she went
outside the house for safety and if the other residents did not want to go out, Susie
would have to stay in. She would be lonely and more dependent, actually, if she lived
with only one or two others in the community. At St. Louis Center, Susie, or all, or some
of her housemates go to restaurants, movies, bowing, whatever, several times a week.
This summer she went to a dance sponsored by the teen club of the nearby church that
featured Elvis Presley. "My man", Susie says; I don't say it the way she does and to a
Lansing Lugnuts game. She came home yelling, "Go Tigers!"

She comes home to my house every other weekend. People like Susie and others like her,
function best in a more sheltered situation, tied to the community, rather than in the
community itself. What are problems that places like St. Louis Center are considered
institutions in Michigan, because of their size, despite their strong community
involvement programming.

Speaker: Commissioner Lewis
Can you wrap up please? Thank you.

Speaker: Mrs. Jill Barker
It is difficult to get public support, I am almost done, for the people who live there.
We've had this experience ourselves. These places are often targeted for closure. Group
work situations are be strongly discouraged by the powers that be regardless of whether
these situations are preferred by persons with disabilities or are based in the
community. We need a true continuum of residential and vocational situations for our
adult children with developmental disabilities. To help them reach their goals such as
this. A satisfying and productive life based on individual preferences, abilities, and
needs tied to the community.

Independently living, economic self-sufficiency and full participation are not goals of my
daughter and other more severely involved people like her. They cannot achieve these
goals, they may not want to achieve these goals. It is imperative.

Speaker: Commissioner Lewis
I am really sorry, we are at six minutes.

Speaker: Mrs. Jill Barker
It is imperative that our state and federal agencies, those who make the rules and handle
the purse strings, understand and respond appropriately to the differing needs of all of
our adult children. Thank you. [ Applause ]

                   Detroit Listening Session Transcript (Rough Edits)                  35
                                   December 2, 2010
Speaker: Commissioner Lewis
Thank you for your comments and what is clear is they are very different views that are
being expressed. I think sometimes it can seem polarizing. Hopefully this process of
being heard will help reduce some of that because I think there are a number of people
who have been providing similar testimony. I am going to ask a different kind of
question. If Susie were here, what do you think she would say is the best part of her life?

Speaker: Mrs. Jill Barker
Her work. Hands down. Thank you. [ Applause ]

Speaker: Commissioner Lewis
I apologize to all the speakers. I know were pushing you along and that three minutes is
really, really hard but in order to respect the opportunity for everyone who is coming to
speak today, we are really going to try and keep you on the timeframe we had asked
which was again, three minutes. If we could, please, have Mr. Jan Plas and then I have
Ms. Renee Uitto on deck. Thank you.

Speaker: Mr. Jan Plas
How are you doing? Good afternoon everybody. I think it is afternoon now. I appreciate
the opportunity of being here today to discuss some of the issues. My attempt at this
today is not the big picture.

There is a lot of times that there are small things that need to be addressed that always
get lost in the shuffle. There are four concerns, personal expense allocation, Social
Security supplemental income. Adult foster care residential facility and the leave of
absence, which has been mentioned already. Community and sheltered workshop
opportunities and the size of residential facilities and guardianship, some of these have
been addressed.

What I would like to point out is that most everybody loses the fact that Social Security
and supplemental security income afford a $44 and $64 a month for personal care.
Nobody can live on $44 or $64 for their personal needs. This has not been increased in
over 15 years.

One of the problems in the state is that Medicaid and DCH would say that if there was
an increase in funds, that increase should go for the adult foster care residential
facilities. That is where these individuals are living. My conclusion is to say if there's any
increase including cost-of-living that at least 50% of the monthly increase should be
allocated to the consumer. It is their money and they have not had that increase in quite
a long time.

Secondly, we will talk about residential facilities that are penalized due to the deduction
of a per diem for each night a consumer is absent. They call this the LOA. DCH and CMA
encourage the integration every consumer in the community and yet they turn around
and say, if you do not stay at your facility, the facility gets penalized to a great amount of
money. Provider costs do not stop when the consumer is away for the night.

                    Detroit Listening Session Transcript (Rough Edits)                     36
                                    December 2, 2010
I think the conclusion should be here, established an acceptable period of time and I am
going to throw this out and say 24 to 30 days a year, which is vacation time for a lot of
people, that a consumer can be away without the per diem penalty being afforded to the
provider and applying it against this LOA procedure. Again, I say these items get lost in
the big picture sometimes, so if you could keep it in mind.

I want to say that not every consumer can engage in community employment on a daily
basis. Sheltered workshops and group involvement are needed for many consumers.
They all involve one word that CMS and DCH seemed to be avoiding and that is
"choice". Everybody has a right to choice. Consumers should be afforded the right to
choice, to visit their families, decide where they wand to live, decide where they would
like to work, and be able to afford the personal items of their daily needs. The basic
premise of these concerns is, and you have heard it today already, is that one size does
not fit all.

Some of the advocacy groups that are saying guardianship is not good, that individuals
should live in their own setting, or own home, they are forgetting that there is a right to
choice. I have one minute, okay.

 Last but not least, guardianship, the need for guardianship is very evident in some
cases. Not all consumers are able to make informed decisions. They need to have
guidance. I say to you that the misinformed advocates that believe all consumers should
be their own guardians need to be curtailed. Guardians are good. The system has
methods to protect against bad guardians and bad guardians should be removed by the
courts, and that can be done.

My name is Jan Plas. I have a daughter who has is developmentally disabled; she has
been retarded since birth. I won't go into details, as you've heard from some people,
about her capabilities. I am here to talk for everybody. I am on the Board of Directors for
a provider. I have been there since 1970. I am on the Livingston County Community
Mental Health Board and I serve in the executive committee for the Michigan
Association for Community Mental Health Boards for 46 counties. All of these items
have been discussed by the association and they recognize the needs for improvements.
We know where these can be implemented.

Some of the ideas that are being proposed, I call Utopia, but a Utopia is different for
everybody. Each of us has a different Utopia. There are areas that need to be looked at
and remember that choice is, 30 seconds, okay. Thank you very much. [Applause ]

Speaker: Commissioner Lewis
Can you stay for questions?

Speaker: Panelist
If a person's choice is to be in a sheltered workshop, would you at least say that maybe
they should get paid more than a penny, I have to ask you. I am hard of hearing.

                   Detroit Listening Session Transcript (Rough Edits)                      37
                                   December 2, 2010
Speaker: Commissioner Lewis
Her question, I believe, if you believe that someone should be able to work in a sheltered
workshop, do you believe that they should be paid more than a penny at piece for peace
work. Is that right?

Speaker: Mrs. Jan Plas
Good question. I think that if they work in a sheltered workshop, the sheltered
workshop should be trying to provide them with an income that goes along with the type
of work that they are doing and can be afforded. It is hard to say. How much money is
coming in, how much money is being provided by the state to run the workshop. The
answer is yes, if it could be accomplished. Thank you.

Speaker: Commissioner Lewis
Thank you very much. [ Applause ]

Speaker: Commissioner Lewis
I apologize. I am struggling with your name, Renee, and then we have Miss Carmen
Shelton on deck.

Speaker: Miss Carmen Shelton
Thank you for having me. My name is Renee Uitto, and I have Cerebral Palsy. I am 39-
years-old and I live in my own apartment. I am here today because the principles of self-
determination is very important to me, because I have freedom in my life. I want to
choose where I want to live and who I want to help me. My independence has always
been good to me and I do not take it for granted for one minute. My hope is to see self-
determination advance throughout the nation. It upsets me to know people with
disabilities still, to this day in some states, live in institutions. It breaks my heart to
know that people like me do not have a say about what they are going to eat, what
activities they are going to do, or even if they have a choice whether or not they will get
out of out of their house. I would like to ask you to forward self-determination to make
life better for all people in this country. Thank you. [Applause ]

Speaker: Panelist
Thank you for your testimony. How could other self advocates like us and ADD, give us
some suggestions, of how we can do that for other people. I see you have so many
important things in your life. How can ADD give some supports to other self-advocates
to be successful like you?

Speaker: Ms. Renee Uitto
I think you could pass more laws and regulations throughout the country and encourage
the people that they do have choices not to just sitting at home. I work with an agency
and for an agency that does not believe in this program.

Speaker: Commissioner Lewis
Thank you, Renee.

Speaker: Ms. Renee Uitto

                   Detroit Listening Session Transcript (Rough Edits)                   38
                                   December 2, 2010
Thank you. [Applause ] If we could please have Miss Carmen Shelton. That will be our
final speaker before we take a break for lunch.

Speaker: Miss Carmen Shelton
Good afternoon. I want to thank Commissioner Lewis and the panel for this
opportunity. Today I'm going to be speaking about community services and supports for
people with disabilities.

I do not currently utilize community-based services at this time, I have traveled the
State of Ohio, this past year talking to self advocates and community home-based
support. Data has shown that more Medicaid dollars support institutions than
community-based supports and services.

States that have well established homes and community-based supports, show an 8%
decrease in Medicaid spending while states with fewer support saw a 9% increase in
Medicaid spending. Home and community based services costs the state less money and
do what people with disabilities want. More money is spent in institutions, while people
wait for services.

In Ohio, 27,000 people are on waiting lists for waivers. Last year, Ohio spent $2.5
billion on nursing facilities, $691 million on intermediate care facilities and $1.4 billion
on community-based services. So, with that being said, I would recommend the
following suggestions.

Collaboration among the different organizations is essential, so that we can come up
with strategies to include spending on home and community-based services. Public
policy members need to be educated about the need for home and community services.
People need to tell their stories.

I work with the Ohio Center to coordinate a legislative Advocacy Day in Ohio and we
had our event in September. There were over 325 advocates in attendance. It was a good
way for people to tell their story.

We also want to reduce waiting lists for services so that anyone with a developmental
disability can get services if they need them. In conclusion, home and community-based
services will assist people with disabilities by opening up options for employment,
recreation and other opportunities.

Home and community-based services will also give people the independence they
desire. Thank you.

Speaker: Commissioner Lewis
Thank you. [Applause ]

Speaker: Panelist
Thanks, Carmen. One thing we have done in the developmental disabilities world, it
seems, is to really use the home and community-based services well. I think it is now

                   Detroit Listening Session Transcript (Rough Edits)                     39
                                   December 2, 2010
about 87% of the Medicaid long-term care services for people with developmental
disabilities and the waiver program. About 87% of the people are in the waiver program
and about 67% of expenditures are in the waiver program. So we have done a good job
using that program and keep progressing.

I have sort of two questions. One, what do we have to offer, if anything, to other
disability groups in terms of that balance which I think we have somehow mastered
better than some of the other groups. And then second, what do we need to look at as we
put all the eggs in the home and community-based services basket? About what we have
actually accomplished in doing that?

Speaker: Miss Carmen Shelton
What was your first question again?

Speaker: Panelist
Is their anything that the developmental disabilities committee has to offer to other
disability communities, in terms of that shifting balance away from institution to

Speaker: Miss Carmen Shelton
I think we need to have a voice for self advocates. I hope that answered your question.

Speaker: Panelist
Do you think self advocacy really makes a difference?

Speaker: Miss Carmen Shelton
I do think self advocates make a difference. Public policymakers hold the key because,
obviously, they hold the money. They have to prepare the budgets. We really have to
work with public policy more too.

Speaker: Panelist
The other question is, when we talk about home and community-based services, do we
look carefully enough at what it is we have actually created under that program? Or are
we just satisfied that we have moved the money to home and community-based

Speaker: Miss Carmen Shelton
Sometimes I think we get complacent and we get satisfied that we have moved the
money to home and community-based services, but, you know, what can be done? Does
that answer your question?

Speaker: Panelist
Yeah, I think so. Thanks.

Speaker: Miss Carmen Shelton
Thank you so much.

                   Detroit Listening Session Transcript (Rough Edits)                     40
                                   December 2, 2010
Speaker: Commissioner Lewis
Thank you. [Applause ] We are going to take a break here in a minute for lunch. Kate is
going to explain what is happening, in terms of lunch. I want to thank everyone who
took the time to speak this morning and I wanted to thank our morning panel. We'll
have another panel this afternoon. I would like to ask you to give our panelists a round
of applause. [Applause ] Thank you for asking good questions and sitting and paying
attention and really engaging folks so I will turn the floor back over to Kate and enjoy
your lunch.

Moderator: Kate Fialkowski
Thank you. So I just like to provide a few instructions for lunch. First of all, you have one
hour. We will start in this room at 1:30. You have one hour. A little information, I don't
know what it's called, the something Pub, right by the registration desk, has a lunch
special that is available today. It is a $10 express lunch and includes a soup, salad, and
sandwich. So you should have no trouble getting in and out of there within an hour and
having the express lunch. So I wanted to let you know that, that is an option for you for
lunch today.

The restrooms are out here, to the left and if you need any assistance, people with white
or purple tags are here to help you. Finally, any individual who has, do you have red on
your things? Okay, so we have no flags on the panelists, but you can recognize them, so
if you have any questions or you want to speak to them, please, do at the lunch break.
Thank you very much and see you in one hour.

Panelist Introduction (afternoon)

Moderator: Kate Fialkowski
Ladies and gentlemen, welcome back. Thank you for rejoining us this afternoon. I would
like to make one public service announcement. In case you didn't notice, we do have
posters outside, so as you're taking breaks or wandering around outside this afternoon,
make sure you grab a poster. We're going on begin again.

This afternoon we are still in the topic of adulthood, and as a reminder it seems like a
long time ago that we had the topic this morning. As a reminder, the topic for adulthood
was, ADD proposed the following question: in the future what will be the most
important contributing factors to ensuring that adults with developmental disabilities
achieve equality of opportunity, independent living, economic self sufficiency, and full
participation as valued members of inclusive integrated communities? Which critical
issues must be prioritized, access to healthcare, employment, supports and services,
technology, housing, transportation, or other issues?

Commissioner, would you like to call the first two speakers this afternoon?

                   Detroit Listening Session Transcript (Rough Edits)                     41
                                   December 2, 2010
Speaker: Commissioner Sharon B. Lewis
Good afternoon and welcome back. If we could please start with Mr. Kenneth Veenstra,
and we have Mr. Kim Coonan on deck. I apologize. Come on up. You can hang for just a
second. Lynnae just point out to me that I forgot we changed the panel. So let me say by
way of apology and introduction we have actually a very esteemed panel with us this
afternoon. I would love to have everyone take a minute and introduce themselves before
we get started.

Panelist: Ms. Lynnae Ruttledge
My name is Lynnae Ruttledge. It is my honor and privilege to be a presidential
appointee. I am in Washington, D.C., and I serve as the Commissioner of the
Rehabilitation Services Administration, so that's essentially the federal agency that's
responsible for vocational rehabilitation and independent living programs here in the
country, so as you are making your testimony today, if you have specific issues or
questions around employment and vocational rehabilitation, I am likely going to be the
person that will want to be able to respond, and I am really delighted to be here. Thank

Panelist: Mr. Maxwell Barrows
I am Max Barrows. My position is outreach coordinator for Green Mountain Self
Advocates from Vermont state self advocacy network. I am also the newly elected Vice
President of self advocates becoming empowered, the national organization on

Panelist: Miss Betty Williams
My name is Betty Williams, and I am the coordinator of consumer education and
training for the Arc of Indiana, and I also am the newly elected President of Self
Advocates Becoming Empowered.

Panelist: Mr. Jim Gardner
My name is Jim Gardner, and I am the president and CEO of the Council on Quality and
Leadership, and I am delighted to be here this afternoon with you all. Thank you.

Speaker: Commissioner Sharon B. Lewis
Great. Thank you very much. Sorry to get you off to a slow start.

                   Detroit Listening Session Transcript (Rough Edits)                  42
                                   December 2, 2010
Adulthood (afternoon)

Speaker: Mr. Kenneth Veenstra
Wonderful. I appreciate that very much. The slow start. Thank you, Thanks for the
opportunity to speak. I am a parent of an 18-year-old son with autism. My name is Ken
Veenstra, by the way, and I wear a lot of hats, but the one that's most important and
dear to me is me being a parent.

So my son is 18 and he has autism. He was diagnosed at the age of 2. Along with grief a
parent experiences with such news and with the time it takes to process the
ramifications of how your life will change to thinking of the life of your child. My wife
and I started asking ourselves what might become of our child, I had to cut this in parts
to get a lot of this into three minutes.

I will go into some of the big factors. Access to self determined life is a necessary
component for not only average person's life and also the life of any individual with a
disability. I can wake up in the morning, choose what I want to eat for breakfast, drive
my car to work, make special plans with friends and drive to my home at the end of the
workday. A life described in this way for many would seem mundane and unappealing
for some but not all, but our brothers and sisters with disabilities may see this day as
described above as self determined life out of reach.

Individuals with disabilities are the most under employed group of people in America.
Many still living group homes or apartments where they always require multiple
roommates to survive, hardly a life I would want and life I do not want for my son who
lives in the most affluent country and county in the world.

We can and should do better. Adulthood for individuals with disabilities will require a
public transportation system that is ADA friendly, people friendly, easily accessible and
inexpensive. This is not what is currently available comprehensively, and in southeast
Michigan the current public transportation system is a menagerie of cities that operate
the smart transportation system. It is a very rigid system with many rules that are not
friendly for individuals with disabilities.

Healthcare for my son with autism has been tenuous at because at times we needed to
pay the private healthcare insurance but we're told that our son had a preexisting
condition called autism. He was unable to access the best healthcare offered in the free
world. We are hopeful that the new nation l a healthcare insurance program will truly be
a benefit.

Social recreation is extremely vital for quality of life after individuals have left formal
education. Being attuned to one social community provides a psychological benefit
enhancement to quality of life overall. Transportation is also an issue and bears some
cost. Access to benefits in the form of entitlements, Social Security, Medicaid, is another
component to assist with a self determinant inclusive life.

                   Detroit Listening Session Transcript (Rough Edits)                    43
                                   December 2, 2010
Almost always these entitlements are all that an individual has to live in an apartment,
pay for transportation, purchase food, clothing, medical care not covered by Medicaid.
After all of these expenses what little is left is often time used for social activities, where
if all discretionary funds have been exhausted then access to the free activities are
sought thereafter. Again transportation can be another barrier.

Ultimately, the American dream is tied to the ideal of homeownership. It is a source of
great pride to have a home, apartment or condominium. As I started the testimony with
example of a real question I cut that first part out by the way. I did ask that question 20
years ago, that about my son, what about access to affordable housing? It will be there.
It is there for some. What is the vision for the future?

A systems approach must be examined regionally to start to address how each of the
defined factors will intersect with one another. It does no good to focus on one factor or
a couple without analyzing the fame work in which each issue area is related to the
other. For example, subsidized housing is only as good as transportation resources
nearby. If SSI is not in place for individuals with disabilities and often access to
subsidized housing or sharing with another individual is a barrier.

My attempt at prioritizing the important elements that make up the most salient factors
in a better world for individuals with developmental disabilities starts by introduction of
at least a systems model approach. So to sum up, there are many, many factors to

I have an example maybe by taking a look at type of a system you can consider a
breaking system of a vehicle, rather than trying to improve the breaking system on a car
by looking in great detail at the material composition of the brake pads, the boundary of
the breaking system may be extended to include the interactions between the brakes
systems, the drums, all of these conditions. That leads to taking a look at systems in a
broader way. I was going to talk about some personal controls and other factors in

With the budgets truly in the hands of individuals and their families new emergent
systems can be realized that may be more cost effective, functional and flexible. There is
a notion of five star quality that some authors have put forward, taking transforming the
client to a citizen, and where supports in the community are truly owned by that

So the future, the solution for a better future is complex and multi-faceted. A model
from which to attempt to understand how to get to a better world for individuals with
developmental disabilities must be able to incorporate such issues of complexity and
change, static, silo type approaches will never create the change we seek. The time has
come –

Speaker: Commissioner Lewis
You need to wrap up. Okay?

                    Detroit Listening Session Transcript (Rough Edits)                       44
                                    December 2, 2010
Speaker: Mr. Kenneth Veenstra
The time to look at the policies currently in place to embrace the five star quality model
as is and to relate to determination and how innovative and system models can be the
vehicle for which a better future may come. Done.

Speaker: Commissioner Lewis
Thank you. [ Laughter] [Applause]

Speaker: Mr. Kenneth Veenstra
I tried to get it all in.

Speaker: Panelist
Can I ask you a question? Thank you so much for sharing so much about what you see in
terms of all of the supports and systems that need to be in place for your son to be
independent. You didn't speak anything about your thoughts in two spots about
employment as he transitions at the age of 18. Can you share just a little about where
you see and where he sees employment and economic self sufficiency?

Speaker: Mr. Kenneth Veenstra
Certainly. I couldn't cram it all in there. [Laughter] We're looking at trying to work with
his post secondary program, trying to get them to be illuminated to the idea that there is
micro enterprising, there are other things that he can do with his talents, so I am having
those discussions weekly with that team, and it is a process like anything else.

Speaker: Panelist
Thank you. I appreciate that.

Speaker: Mr. Kenneth Veenstra
Thank you very much.

Speaker: Commissioner Lewis
Thank you. Great. Can we please have [Applause] Mr. Kim Coonan join us up here and
we have Ms. Janie Vermuelen on deck. If you could, when we call you to be on deck, I
know we're getting a little crowded up here in this corner of the room, but if we could
maybe clear a little space so our on deck folks can end up here so we can get people on
deck that would be great. Thank you very much.

Speaker Mr. Kim Coonan
Madam Commissioner, thank you very much for holding nationwide hearings about the
needs of people with developmental disabilities. I am speaking for Left Behind in
America. I am the state of Michigan coordinator for Left Behind in America. My name is
Kim Coonan, and I am an elected county Commissioner in Bay County, Michigan,
holding that position for the last eight years.

                   Detroit Listening Session Transcript (Rough Edits)                   45
                                   December 2, 2010
By way of background, I was born into a developmental disability community, having an
older brother, Bill, who had severe mental retardation and seizures, when I was a
youngster we lived in poverty with four brothers and a sister, and there were no services
and when schools would not accept people like my brother, it was a lot like the feeling of
people on the waiting lists that are now experiencing a feel of hopelessness and
helplessness, and in the 1950s our parents were pioneers with the associated for
retarded children known as the ARC. They fought the good fight to create opportunities
for people like my brother.

Today I am at a loss to understand why the national ARC has not become engaged in a
fight to eliminate the waiting list for the Medicaid waiver services for the 500,000
people with a developmental disability across America.

The saddest day in my mother's life is the day my brother was placed into fort Custer
state hospital in 1965. It was 100 miles from our home. The scariest day of my mother's
life was when Bill was released from the state hospital into an unprepared community.
He was moved into Flint some 50 miles from home. This is where his personal care was
so neglected that he lost most of his teeth. Towards the end of Bill's life, I brought him
home to live with me. I would not have been able to support Bill in his dying days if he
had moved from another state to live with me.

That is why I am here to tell you about an important and related issue, portability of
services. There is a crying need for portability of services from state to state for people
with developmental disabilities. I will start to tell you one story of a no wait member. I
will call her the mother Julie and her daughter with a disability so profound that she
cannot talk, walk or see, and her name is Susan. When hurricane Katrina hit, Julie's
home was destroyed and they had to evacuate to Tennessee. Susan had a desperate need
for services, not just basic services to live but also learning and progressing in the
community. Yet there were no services available in Tennessee due to the long waiting
list for community services provided through the Medicaid waiver. Despite Julie's best
efforts no services were ever provided in Tennessee and Julie and Susan were forced to
return to sub- adequate housing in Louisiana where they live now barely surviving. Julie
and Susan would like to move to another state where they have support of family and
relatives, but they're unable to because every state which they might move to has a
waiting list sometimes many, many years.

There are individuals and families all across the country literally held prisoners in their
current state of residence because of similar situations. Many military families who
must move every few years never achieve critical services. An individual with a profound
disability receiving services in Utah whose parents have died cannot move closer to
relatives in Colorado because Colorado's wait list for services. She would lose her
services in Utah and have none from Colorado.

                   Detroit Listening Session Transcript (Rough Edits)                   46
                                   December 2, 2010
Individuals on a wait list in one state lose their position on that wait list when they move
to another and must reapply and register once again falling to the bottom. Yet this
problem has been ignored by agencies and bureaucrats across the country. We know of
only one state that will provide it for those moving out of state and that is Vermont.
Individuals with disabilities on wait lists are invisible to the system. They are
unorganized and no one represents them, with the exception of Left Behind in Florida.

Last year no wait developed a petition which had been present to the President of the
United States and members of Congress and other leaders. It has been signed by 12,600
individuals, many who chose to leave a comment and for the sake of time I know I will
just read a couple of these comments verbatim.

Speaker: Commissioner Lewis
Make it brief. We're overtime now.

Speaker: Mr. Kim Coonan
Okay. I am sorry.

Speaker: Commissioner Lewis
Thank you.

Speaker: Mr. Kim Coonan
One comment and I will close.

Speaker: Commissioner Lewis
Thank you.

Speaker: Mr. Kim Coonan
As a 20 year military person it has been extremely difficult to obtain needed services for
my son under the Medicaid waiver program and then to be transferred. I am being
transferred the choices always have been leave my wife and child behind where there are
no services or move with orders to or move to orders where the services had have to be
applied for and waited again and again. In conclusion, no wait believes that there and
can be solutions to this problem of a lack of portability of services. Individuals on
Medicare can receive their care anywhere in the country without waiting lists. Why can't
services for individuals on the Medicaid waiver be the same? No Wait--last paragraph.
No Wait. No Wait and Left Behind in America urges the administration on
developmental disabilities to recognize the portability issue as a priority and to spend
time, money and efforts in attempts to resolve this problem. Thank you very much.

Speaker: Commissioner Lewis
Thank you. [Applause] What do you think that ADD can do to help with you said
removal of the waiting list and affordable services? What do you think ADD can do to
move that along?

                   Detroit Listening Session Transcript (Rough Edits)                    47
                                   December 2, 2010
Speaker: Mr. Kim Coonan
I think we need to use the resources we have, the strength and numbers we have to push
Congress where this can be - and this program here through the session that we're
having today let people know that it is immoral for people not to have access to services
and for people who may for one reason or another can't leave a state because they would
lose their services because they would therefore fall into the bottom of the list in the
other states, so portability is -- they're both so huge, huge for people that don't have
services, and for people who may lose services if for one reason or another they had to
move to another state.

Speaker: Commissioner Lewis
Thank you very much.

Speaker: Mr. Kim Coonan
Thank you. [Applause]

Speaker: Commissioner Lewis
We now have Ms. Janie Vermuelen, and we have Mr. Steven Dell on deck.

Speaker: Ms. Jane Vemuelen
Hi, everybody. How are you today? Good. My name is Janie Vermuelen. I am a person
with disabilities. I am a self advocate, and President of a self advocate group in Wayne
County called the ARC. We call People First, we meet at least once a month. I live on my
own. I work, earn money, I have my own micro-business, and I enjoy life.

One of the most number one things I want to tell you all, all people with disabilities have
rights. You should know what they are, so people don't go over you so you should know
your rights, know what you have and that way you can live your life the way you want to
live it. I found out about self determination from a really good friend of mine. He is very
high up in the community. He is among us right now in the audience, Don Hoyle, can
you stand up, please, show yourself, Don.

[Laughter] This is about you right now. Ok? So, I would like as I said you guys have
rights, and I do enjoy life, and there is also self mentors that will also let you know about
rights, and I am sure they will be speaking today, so I will let them introduce themselves
to you, and also one of my major pet peeves is the R word, so hopefully by the first of the
year in the state of Michigan that bad word will no longer exist. [Applause] Because I
hate that word with a passion. I live in my own house, been living there for eight years, I
lived in a group home for twelve years. I love self determination, and I will never go back
to group home.

Speaker: Commissioner Lewis
Great. Thank you, Janie. [Applause] I am glad you spoke about your experience and
where you are now. On my question to you is if you have any, what would be good
suggestions that you would give ADD to put self advocates in your shoes?

                   Detroit Listening Session Transcript (Rough Edits)                     48
                                   December 2, 2010
Speaker: Ms. Jane Vemuelen
Self advocates probably know where their ARC is in the community, go to places like
"Walk a mile in my shoes" which I go once a year. It talks to--I voice my opinion, so you
guys too know, you have a voice, too, so don't be afraid to use your voice. Just overall
just know your representatives and senators and so with the help of that you can become
self advocates, especially through the ARC.

Speaker: Commissioner Lewis
That's wonderful. Terrific. Thank you, Janie, that's very good advice. [Applause]

Speaker: Ms. Jane Vemuelen
The ARC of western Wayne County if you need that number is area code 734-729-9100.

Speaker: Commissioner Lewis
Thank you. [Applause] Okay. Next we have Mr. Steven Dell, and then we have Mr.
Teddy Fitzmaurice on deck. Hello.

Speaker: Mr. Steven Dell
Hello. My name is Steven Dell. I am 42 years old. I am an advocate for decision making
meetings (DMM). DMMs are used to educate and assist people with obtaining legal
advocates and is protected under Michigan Mental Health Code Chapter 6. I help
support the person and their families to help them understand their rights and options.
When a support circle is seeking establishing a legal guardianship, the consumer
advocate is a neutral person for the person's individual rights to be maintained as much
as possible.

Why is it important to be an advocate? This job gives me satisfaction. I know I am
helping other people. It helps remind me how fortunate I am when I see so many people
we support who do not have the same level of support and rights that I have. Many
people under estimate me. I don't look at that as a negative. I can help ease many
individuals and families; I can help them feel more at ease.

I am a good example to others that no matter what degree or type of disability a person
may have, they can achieve and do more than others think they are capable of. Right
now we have approximately 3,000 CLS individuals and adults, 1,000 of those have a
power of attorney or other forms of supports. Thank you for your time.

Speaker: Commissioner Lewis
Thank you very much. [Applause]

Speaker: Panelist
Mr. Dell, thank you very much. Your passion and commitment to these issues is
impressive. I was just wondering if you could help us understand how is it that you came
about gathering together the understanding and the expertise and all of these skills that
you have and in what lessons are there for the rest of us?

                  Detroit Listening Session Transcript (Rough Edits)                  49
                                  December 2, 2010
Speaker: Mr. Steven Dell
I don't have a degree. I don't like to sound, if you listen, it is all common sense.
[Laughter] Thank you very much. [Applause]

Speaker: Commissioner Lewis
Thank you. If we could have Mr. Teddy Fitzmaurice come on up, and we have Mr. Jeff
Guthrie on deck.

Speaker: Ms. Fitzmaurice (Mr. Fitzmaurice’s mother)
I am going to preface Teddy's remarks with just a few sentences. My son is just like so
many of your sons and daughters that are in this room. When he first came into my life,
when he was four months old, the vision that I had for his future initially was so much
like everyone else's, group homes, institutionalization, no employment, no life, that's the
future --that was the future that our kids had at that point in time.

I met a lot of people in this room who helped me envision something different. Teddy
will tell you about his life. He has a life anyone would envy, and I envy his life. When you
think about and you hear what he is talking about, he is not something out of the
ordinary exceptional. He is just like all of our kids. He has been given amazing
opportunities that most kids don't get. Teddy, it is all yours.

Speaker: Mr. Teddy Fitzmaurice
Teddy, Fitzmaurice, and my life, my cousin lives in a group home. I don't want a group
home, I don't want that care. It is sad.

Speaker: Commissioner Lewis
Talk about your life. I know. I know. Teddy, you have a business?

Speaker: Mr. Teddy Fitzmaurice

Speaker: Commissioner Lewis
Teddy, you told us in the things that you gave us online a lot about the work that you do.
Can you talk a little bit about the work that you do? What does your T-shirt say?

Speaker: Mr. Teddy Fitzmaurice
I love my life.

Speaker: Commissioner Lewis
Did you make that T-shirt?

Speaker: Mr. Teddy Fitzmaurice
I do.

Speaker: Commissioner Lewis
Do you sell your T-shirts? Where do you sell your T-shirts?

                    Detroit Listening Session Transcript (Rough Edits)                   50
                                    December 2, 2010
Speaker: Mr. Teddy Fitzmaurice

Speaker: Commissioner Lewis
Where have you gone for conferences?

Speaker: Mr. Teddy Fitzmaurice
New York City, Puerto Rico, Washington, D.C., and Go Yankees!

Speaker: Commissioner Lewis
So you went to Puerto Rico?

Speaker: Mr. Teddy Fitzmaurice
I went to Puerto Rico.

Speaker: Commissioner Lewis
Tell me about Puerto Rico.

Speaker: Mr. Teddy Fitzmaurice
I like it there, rain forest, and, I like my mom.

Speaker: Commissioner Lewis
So what did you do? Why did we go to Puerto Rico? What did you do?

Speaker: Mr. Teddy Fitzmaurice
I met all the people I like. I don't want to - They weren't strangers very long.

Speaker: Commissioner Lewis
Did you sell buttons in Puerto Rico?

Speaker: Mr. Teddy Fitzmaurice
I do.

Speaker: Commissioner Lewis
What about in Washington? What did you do in Washington?

Speaker: Mr. Teddy Fitzmaurice
Washington, D.C. I talked about the Community Choice Act.

Speaker: Commissioner Lewis
What's the community choice act?

Speaker: Mr. Teddy Fitzmaurice
About ADA, about Adapt.

Speaker: Commissioner Lewis
What do you want?

                    Detroit Listening Session Transcript (Rough Edits)             51
                                    December 2, 2010
Speaker: Mr. Teddy Fitzmaurice
I want freedom and peace and those people don't have freedom in a group home and
you have civil rights, you help people.

Speaker: Commissioner Lewis
You want the Community Choice Act passed?

Speaker: Mr. Teddy Fitzmaurice
We did, we wanted the Community Choice Act.

Speaker: Commissioner Lewis
What else do you want?

Speaker: Mr. Teddy Fitzmaurice
I want my own house.

Speaker: Commissioner Lewis
Don't you have your own house?

Speaker: Mr. Teddy Fitzmaurice
I live downstairs. Mom is upstairs and I live downstairs. My friend Ken helps me and
Jana, my cousin.

Speaker: Commissioner Lewis
Do you have lots of people who help you in your life?

Speaker: Mr. Teddy Fitzmaurice
My whole life is about family and friends.

Speaker: Commissioner Lewis
Can you talk about your business now?

Speaker: Mr. Teddy Fitzmaurice
I am the President of Teddy T's. I sell T-shirts, bumper stickers or buttons, and I met the
President and I met Patrick Kennedy. I know his mother.

Speaker: Commissioner Lewis
And President Clinton you met, too.

Speaker: Mr. Teddy Fitzmaurice
And President Clinton. I wrote a letter to Obama about please stop smoking. [Laughter]
And he wrote him a letter back.

Speaker: Commissioner Lewis
Thank you, Teddy. [Applause]

                   Detroit Listening Session Transcript (Rough Edits)                   52
                                   December 2, 2010
Speaker: Panelist
So, Teddy, how can we help more people start businesses like yours? How did you get
your start in your business?

Speaker: Mr. Teddy Fitzmaurice
Mom's credit card.

Speaker: Panelist
So it starts with having a mom who has a credit card. Okay.

Speaker: Ms. Fitzmaurice
We had a Very difficult time getting support from rehabilitation services because it's not
a profitable business in their mind. We've had till time getting support from
rehabilitation services because it is not a profitable business in their mind. The fact that
it improves his quality of life ten fold from anyone I know is irrelevant to them. The
bottom line is does it make money. Since it doesn't, it pays for hotel rooms, restaurants,
museum entries, but it doesn't get him off SSI, they don't want to support it, so that's the

Speaker: Panelist
Teddy, anything else you want to add about starting your own business?

Speaker: Mr. Teddy Fitzmaurice
I do like it a lot.

Speaker: Commissioner Lewis
Thank you so much. [Applause] Okay. We have Mr. Jeff Guthrie, and then we have Ms.
Dena Gassner. Dena Gassner.

Speaker: Mr. Jeff Guthrie
Hello. My name is Jeff Guthrie. I have a developmental disability. At time, my mom and
mu support worker made goals for me. I like it now. Now I can make my own goals. I am
thankful for person center planning and self determination, and I am in control of my
services and my life now.

For me being in the self determination worldwide movement helps start my goals,
especially my desire to move out of my parent's house and into my own place and
finding a job which I love. I have also learned how to budget, how the money for my
services are spent. This gives me empowerment over what services that I provide, and to
help me reach my goals in life.

After choosing services I went through self determination. I was excited to say that I
could save the country some money [Laughter] And more importantly I got support
that I wouldn't normally have without self determination and as a result my quality of
life has improved dramatically. I live in an apartment with a roommate and have a job
that I love and co-workers that I care about, and I volunteer and am very active in the
community. I am actually a volunteer at the zoo. There are essential outlets of living a

                   Detroit Listening Session Transcript (Rough Edits)                      53
                                   December 2, 2010
self determined life. I recommend self determination for everyone and hope you will
support more and more policies that shift decision making about supports and services
to people who rely on their services. Thank you.

Speaker: Commissioner Lewis
Thank you. [Applause]

Speaker: Mr. Jeff Guthrie
You're welcome.

Speaker: Panelist
Jeff, if I wanted to get involved, you said the self determination movement?

Speaker: Mr. Jeff Guthrie

Speaker: Panelist
How would I get involved with that movement?

Speaker: Mr. Jeff Guthrie
You could see your support worker, and they can help you start that process. I have been
doing it for about five years now.

Speaker: Panelist
Five years now?

Speaker: Mr. Jeff Guthrie
Yeah I have my own budget and everything like that already. I am happy about that. I
have actually saved quite a bit of money on the services that I have chosen. I do not
have my own staff, but I do have an agency that does support me.

Speaker: Panelist
Okay. Thank you.

Speaker: Commissioner Lewis
Thank you very much. [Applause] If we could have Ms. Dena Gassner join us, and we
have Mrs. Brenda Braceful on deck.

Speaker: Ms. Dena Gassner
We have to start with a little levity. I live in Nashville, Tennessee now, and I am going to
teach you guys the hidden curriculum of the south. Anybody here from the South? You
can talk trash about anybody if you finish with bless her heart, so this is a little
interactive at certain points I will point to you and you need to say "bless your heart."

                   Detroit Listening Session Transcript (Rough Edits)                     54
                                   December 2, 2010
The truth is that we often deny to adults with autism the kind of empathy and support
that we make readily available to children with a condition. Or for that matter to people
with white canes at crosswalks. We under estimate their capabilities, reveal our
discomfort in their company and display impatience when they inconvenience us.

Thank you for allowing me to be here. My name is Dena Gassner. I have a masters
degree, UCEDD trained social worker who entered the field of autism after the diagnosis
of my son Patrick, now 21. His autism led to the discovery of my own autism at 38. I
work as a systems navigation specialist for the ARC of Williamson County on a grant
that I secured on my own. I am a professional development provider averaging 50
venues per year, both positions are an integrated part of my self-employment plan.

Donovan Duckers quote from the Atlantic Monthly captures my message: “Those
presenting with tangible disabilities experience presumed incompetency. “ Being
misdiagnosed with an ID at ten years led my son to massive [indiscernible] Now having
graduated high school with a 3.1 average, Patrick enjoys being in the Company with his
mother, my peers, my clients, and many of my professional colleagues who endure the
bias of presumed competency.

I understand that the dichotomy of intelligence without function is bewildering to others
but no more so than to us. Emotional disturbances sometimes leading to suicide in my
part of the population are common. Individuals with less understood expressions of
autism experience incapacitating cognitive difficulties, deficits such as information
processing, working memory and so on. Many are endangered by missed or
misdiagnoses with escalating consequences, yet most states are not providing any
services for these individuals.

The frustrating part is with relatively low cost intensive short-term interventions we can
be successful. With any condition owning self understanding and being able to articulate
what one needs is the single best predictor of long-term success.

In terms of suggestions, committee members, all students should receive self awareness
and self advocacy training that should be mandated and curricular. We must call for
global training for mental health professionals, a prior mis-diagnosis and ensuing
maltreatment for bipolar disorder nearly killed me. This is a pattern for people in my
part of the community. Bless their hearts. We must discontinue the rehabilitation
model. We are not rehabilitating. We demand an individualized model focused on
modified and adaptive approaches to achieving positive outcomes rather than, oh, I
have autism, that screwed me up. (Hold on.)

                   Detroit Listening Session Transcript (Rough Edits)                  55
                                   December 2, 2010
Rather than attempting to force individuals with ID&DD to become normal. We would
never expect normal as a standard for an individual with a physical condition yet we do
this with our people. With need to provide an alternative way of being different. Many
individuals with ASDs are hard wired to be specialists, not generalists, trying to force
them into low paying multi-tasking jobs results in failed outcomes. More funding must
exist for school to college transition programs supported on smaller campuses and that
must include self determination at my level which for me would mean a graduate
degree. It is not appropriate for 20-year-olds to be campused with 14-year-olds.
Transition programs should be housed offsite with same aged peers.

Given escalating graduation expectations, not everyone’s going to get one anymore. We
must demand a moderate high school diploma and offer GED instruction provided by
qualified special educators as part of the transition option. We must maximize self-
employment options for people with social impairment issues. We must advocate for
funding for intensive community based supports for those experiencing late diagnoses,
the average diagnoses of my 125 point clients is 30. Most have college experience, 95%
are unemployed and uninsured. These late diagnoses have debilitating outcomes, and
we need much more intensive supports. Lastly, we must acknowledge that all autisms
include challenges that intellect alone cannot overcome any more than intellect alone
can eliminate the need for a white cane. Thank you. [Applause] I do that to people.

Speaker: Commissioner Lewis
First of all, thank you for teaching us bless your hearts. I think it is a nice take away that
all of us will have as a result, and I think that's just a nice gift that you have given to us.
You referenced self-employment for yourself. What could ADD and other federal
partners do to help make that a reality?

Speaker: Ms. Dena Gassner
In my state of Tennessee, bless their hearts, I am the second self-employment plan in
the history of the state. I find that an atrocity. We learned how to do self-employment
together largely because I am a persistent redhead. It has nothing to do with autism.
[Laughter] And I just wasn't going to stop until I maximized my benefit. I still don't
know how to get off of self-employment in my PASS plan. Nobody can tell me. You
know, I think professional development training for state VR agencies on how to utilize
self-employment as an option and I think also we need to change our model for job
coaching. The job coach that I need is going to look a lot different than job coaches
others need, and they ultimately had me find my own job coach.

                    Detroit Listening Session Transcript (Rough Edits)                       56
                                    December 2, 2010
Lastly, they expected me to operate a business independently, to which I said I don't
think neuro-typical people run their businesses independently, and they said if you're
disabled in math, I don't think you can run a business. I said, no, I want to be Mick
Jaggar. I don't think he does his own business plan. I hired a CPA because I knew I can't
do math. That's the sign of a good business person is knowing when to hire help. I was
penalized for that. Now they want me to take a salary even though any business hasn't
got six month worth of expenses in front of it and they threatened to take away my
equipment if I didn't start drawing a paycheck even though it is not standard good
business practice. Thank you.

Speaker: Commissioner Lewis
Thank you very much. [Applause] We have Mrs. Brenda Braceful, and on deck we have
Mr. David Taylor. We also have a Mr. Dewitt Taylor, so I want to make sure that David
Dewitt Taylor, I want to make sure that we're right, getting in the right order here. First
we have David Taylor on deck. Thank you. Hi. That's your name?

Speaker: Thonen Braceful (son of Mrs. Brenda Braceful)
My name is Thonen Braceful.

Speaker: Commissioner Lewis
Nice to meet you.

Speaker: Mrs. Brenda Braceful
Good afternoon. My name is Brenda Braceful. I would like to give testimony that I call
roots and wings. It is about the challenges that I face with an autistic son facing
adulthood and the desire to move him towards self sufficiency.

I want to thank the panel and the Commissioners and all of the people who took time
from their schedule to come today so that all the stakeholders would have a voice and
this is a wonderful forum for it. As a parent who didn't hear his son's voice for five years,
I can personally attest to the beauty of a voice. The years pass so quick that it is easy to
become consumed by the daily challenges. We help our children develop roots so they
can withstand the winds of change, but we must remain mindful of the need to prepare
them for adulthood. That's my first point.

Preparation is the key. We have had numbers speakers talk about IEPs and IDA, and I
think it is important for parents to be advised so they can fully utilize the services. It is
not enough to get a notice in the mail to show up for the IEP, but how do you make that
work for you and your child?

We have to be honest in terms of understanding our child's knowledge, skills, and
abilities, so we can look at what are their strengths, what are their weaknesses, what
areas will be required? [Indiscernible] is intrinsically involved in numbers.

                    Detroit Listening Session Transcript (Rough Edits)                     57
                                    December 2, 2010
This clock was not working when we arrived this morning. He has been up here four
times. This clock is now right. [ Laughter] I think as parents we have to learn to be
prepared to remain flexible. As we heard, not every situation presents an identical
matter so they won't have identical solutions. I think my second point is advocacy need
not equate to antagonism. I am a fierce advocate for my child. My husband used to
laugh that our pictures where in the school center building so when we showed up they
could tell everybody to go to lunch. [Laughter]

Over the years I learned that it is important to work collaboratively with the school
system and professionals, and I recognize that the school system, the pros, they have a
greater exposure so they have generalized knowledge and they have a global approach. I
understand budgetary issues and cuts and reassignments, but I also expect them to
respect that I have the greatest knowledge of my child's specific situation.

Parents are the ultimate case managers, and when we learn how to work collaboratively,
knowing my options, knowing his rights, we were able to move him forward positively.
Understand what goes in your new respective states. At age 14 in Massachusetts, you're
eligible for transition services, you're eligible for services until age 26, you have to
understand what happens if your child graduates, what's the impact on available

What's the difference between a diploma and a Certificate of Completion? All of those
have to start factoring into the plans that we make for our children's future. And last but
not least, we have to make sure we're properly defining success. As far as I am
concerned, I am not setting the bar any lower for Thonen. We have to be careful where
we put the bar. If I put the bar here, it hits him in the windpipe and he can't say
anything. If I put it too low, he trips over it. I have to understand what can I do to ensure
that he has the highest possible quality of life given what he has to work with? We
measure his success not necessarily where he finishes but look at where he started and
more importantly to make sure that he enjoys the journey. I think it is only appropriate
Thonen will have the final word, Thonen, come on up.

Speaker: Thonen Braceful
Good afternoon. My name is Thonen Braceful, and I am an intern, I am an intern, at
Blue Cross and Blue Shield of Michigan. Thank you very much. [Applause]

Speaker: Commissioner Lewis
Thank you. Good job. My question to the both of you is, if by any chance if there is any
advice you would give ADD to help train parents, support staff or allies to better support
self advocates, what would, how would you?

                   Detroit Listening Session Transcript (Rough Edits)                     58
                                   December 2, 2010
Speaker: Mrs. Brenda Braceful
I think making the information available; again, when you start the IEP process, it can
be just overwhelming. You get a notice, and you show up, and then you are bombarded
with multi-pages of forms and everybody is asking to you sign, and I think it will be well
worth it to take some time beforehand to really help people understand this is an
individual educational plan for this child. These are the things you have to consider.
These are the types of services that may be available, and make that truly a collaborative
process. Thank you very much.

Speaker: Commissioner Lewis
Thank you. We have Mr. David Taylor and then we have Mr. Ronald McGough on deck.

Speaker: Mr. David Taylor
Okay. All right. Good evening, everyone, my name is David Taylor. I am 24 years old. I
have a development disability, in school I had a hard time learning in classes, and one of
the things that I have difficulty with was I was skipping classes and getting in fights and
it hurt me in the long run and I decided to get my life to a point that I wanted to get
serious, and one of the things that I got serious was I wanted to know how to change my
life so I got involved with self determination, and freedom to me is basically is that it
means to me that you have mean to special feelings to dream outside of the box and to
dream bigger than you ever can dream, and the ability it is to hire and fire your own
support staff, supports is for people who have a family, friends, and people who are in
the provider organization who love and care for you and support you in everything you
do in your life

Responsibility is one of the things tells you that lets you know that you have the ability
to be responsible and use your money carefully, confirmation is basically you being
inside the table around and letting them know how you can make your services better
and change certain things. One of the things that I am asking you all is please support
the principle for self determination and person-centered planning.

It is very important that you support this. I used to have support staff as time went on
and I grew older and I do my own stuff and I became actually a direct support staff for
somebody, and I like and I will never change, and I also become certified first aid and
CPR and so I can say that my life had changed having this around my life and having
support and having self determination, and one of the things I am very proud of it I am
actually in January I should be getting my license, so I am very happy for that.

One of the things I am very passionate about, I love to advocate and have that passion
for people like me and other people who receive the services and who have this life, a lot
of people will fall in the cracks if the services weren't here for us, and it is kind of hard
for us to not have the service and we need these service more than anything and I spoke
around the world promoting self determination, doing the advocacy, and I can say that I
became a role model to people who can't speak for themselves.

                   Detroit Listening Session Transcript (Rough Edits)                      59
                                   December 2, 2010
It makes me proud to see the smile on their face and determine that I made life better
for them. I wanted to give conclusion to everybody and let everybody know when you
support this, it makes my life and other people who have this life more important how
everything goes, and I wanted to thank you for the time and you have a good day. Thank
you. [Applause]

Speaker: Panelist
Hello, David. I really like your story of your life. One of the things I always talk to people
about is I believe people with disabilities can become direct support staff for other
people with disabilities. If you had some people, well, how can ADD support more
people with developmental disabilities to become direct support staff for other people
with disabilities?

Speaker: Commissioner Lewis
Let me see if I can help. I think David is having a hard time understanding the question.

Speaker: Panelist
You think you understand what I was saying?

Speaker: Commissioner Lewis
I think I understand. The question is so what are some ideas that you might have since
you were able to become a direct support staff person, right, that's helping other people,
and I hear Betty saying she thinks that's a great idea, that people with disabilities are
helping other people with disabilities by being direct support staff. Do you have any
ideas on how we could help other people do that the way that you have? What are some
of the things that help you become a direct support staff?

Speaker: Mr. David Taylor
Spread the word more. Just put it out there more for people to understand. When you
do it, just have like conferences and just bring to them more so they can understand
what it is for and why it is so important to have stuff like that, and just be open when
you do it. Thank you.

Speaker: Commissioner Lewis
Thank you. Good job. [Applause] Great. We have Mr. Ronald McGough and then we
have Mr. David Dewitt Taylor on deck.

Speaker: Mr. Ronald McGough
Good afternoon, everyone. My name is Ronald McGoff. I have lived in a lot of different
group homes, different places, and I now live in a self determination home on my own. I
love my life now. I also have gone to Lansing many times and met with many senators in
Michigan. It is very important that we as people with disabilities go to Lansing and meet
with people so that they can know what we want. That is one of the reasons why I am
here today.

                    Detroit Listening Session Transcript (Rough Edits)                     60
                                    December 2, 2010
I am not only here for me, but I am here for others. I would like all of you to know that
we as people with disabilities know what we want even if we do not, even if I am the
voice for the voiceless, and I know what people want with disabilities, that we want is
our life to be free and we want to live a free life just like a normal person would live. We
all have the things that we all want what everyone does, and but I just want everyone to
know that living a life with a disability, my life has changed dramatically, but I love my
life, and I love everything about it.

I love being an advocate for people with disabilities because I have gone to Lansing
several times; my life has now changed because the senators in Lansing are now
listening to the people with disabilities. So keep that in mind. Thank you very much.

Speaker: Commissioner Lewis
Ron, thank you very much. Let me ask, what are in your opinion, what are the keys to
being a good and effective self advocate?

Speaker: Mr. Ronald McGough
The keys to being a good and effective self advocate as myself are to know what you want
and always strive to get what you want. Don't be quiet until you get it. Let your voice be
heard. Thank you very much. [Applause]

Speaker: Commissioner Lewis
Thank you so much. Great job. We have Mr. David Dewitt Taylor, and then we will take
a short ten-minute break after Mr. Taylor is finished.

Speaker: Mr. David Dewitt Taylor
Good afternoon, everyone. My name is David Dewitt Taylor. I was born February 15,
1983, and makes me older than the other David Taylor. Sorry, David. 27 today. I mean
next year. I was born in the same nightmare as any other can be. I was born retarded as
well, but in 1983 after midnight. I am so lucky to be here today because my story being
around Michigan and Baltimore because I lived with my parents 25 years and I'm very
excited to tell you the sorry about why I came out on my own.

My story back in my parents’ house I was young, loved music, I liked to dance, and being
silly and funny, like me today, HA-HA. I love my life better today than before because
when my mom, she had midwives, and me and my brother were all born in the house,
not a hospital, a house. The truth is when I was delivered to my mom and my father's
hands, the first thing out of the midwife's mouth was retarded. I asked my mom and
today because I knew I was born that way because my hands tell the story.

                   Detroit Listening Session Transcript (Rough Edits)                     61
                                   December 2, 2010
What I am telling you today is now I live on my own since 2008, September 20th of two
years ago. I live at great oaks apartments for two years with my own staff which I hired
and I am very lucky to see her in the back background today. That's my staff, Nicole. I
love my life because -- I love my life. I am an advocate for others. I look to achieve star, I
am a DJ, and I volunteer in the community and the library and I also go to church on
Wednesday and Sunday which actually my mom realized I was born with, they took me
right to Sunday School because my parents were teachers back then.

It is my story because I will never forget what my parents done for me. I love my
parents. I will never forget what they done for me, but the truth is I have brothers before
me -- brothers before me. They were around my age and in the 80s, and I was just young
back then. I didn't know my disabilities until a speech teacher told me in third grade. My
parents took me and moved to Rochester Hills, Michigan because I used to be in
Thorndale, Michigan.

I lost my hip in 1996. It took me one whole year to get back walking. Today I have a lift
on my shoe, and pardon me, I am very happy to be here today. Thank you. [Applause]

Speaker: Commissioner Lewis
Thank you for your story. Can you tell me how you came up with the name for your

Speaker: Mr. David Taylor
Actually, my parents say you should get a service book. We found some words, and my
dad picked the word do, and kind of like a T in the book, and I got my business name
and my real name, David Dewitt T. Taylor.

Speaker: Commissioner Lewis
So you have a DJ business and it is called Dazzle Do Time. That's great. Thank you very

Speaker: Mr. David Taylor
You're welcome. [Applause]

Moderator: Kate Fialkowski
We're going to take a short ten-minute break so everybody can stretch your legs, and roll
and do what we need to do, and we'll be back at 3:00. Thank you.

                    Detroit Listening Session Transcript (Rough Edits)                     62
                                    December 2, 2010

Moderator: Kate Fialkowski
Okay. Thank you. We are going to get started. We are in the homestretch for this
afternoon. I know it can be a long day sitting here, and I just want to say that we all
thank you so much for coming, for participating, and for staying through the length of
the day. Thank you. Because your participation is really meaningful to us. Okay. The
next topic. We are moving onto a new topic now. The next topic is aging.

ADD proposed the following question in this area. Aging concerns affect us all. The
number of adults with developmental disabilities aged 60 and older is projected to
nearly double from 642,000 in the year 2000 to 1.2 million in 2030. What can we do to
empower older individuals with development disabilities to remain in their own homes
with a high quality of life to maintain independence and good health for as long as
possible and to enjoy community and family relationships through the end of life?

Speaker: Commissioner Lewis
Okay. We are going to start with Mrs. Cathy Fikes. And we will have Mrs. Elaine
Taverna on deck.

Speaker: Mrs. Cathy Fikes
Thank you for having us. Okay. Hello, everyone. I'm glad to be here. My name is Cathy
Fikes. I work for the Community Living Services, a non-profit organization in southeast
Michigan. The job I have is to transition people out of nursing homes and back to their
families in their homes in the community.

According to the national family caregivers Association, in 2009 65,000,000 people or
29% of the US population provides care for a chronically disabled or aged family
member. 14% of those individuals care for a child with a developmental disability.
Caregivers aging along with the family members, I'm sort of nervous. Caregivers are
aging along with family members with development of disabilities.

Oftentimes we find that the family needs multiple supports in order for the individual
with a developmental disability to remain in the home living with their family. If they
choose to do so, this requires coordination of care between long-term care agencies,
education, training, and a single point of entry. The system builds capacity and
efficiency across systems so that family members can get the help they need to
successfully keep the family together in their home. The solution is we ask that you
consider funding the further development of aging and disability resources Center or
single points of entry and funding grants that promote collaboration between long-term
care organizations that serve people with developmental disabilities, physical
disabilities, and elderly so we can support families who have multiple needs to remain
living in their homes and communities. All right. Thank you very much. [Applause]

                   Detroit Listening Session Transcript (Rough Edits)                     63
                                   December 2, 2010
Speaker: Panelist
I know it is not really my turn, but could I ask the next question? [Laughter] First of all,
thank you so much. Please don't be nervous.

Speaker: Mrs. Cathy Fikes

Speaker: Panelist
I know that it is kind of overwhelming to speak in front of all of these people and be
speaking with us, but I'm just wondering with what you were describing, have you
worked with an organization called ADRC? It's an Aging and Disability Resource Center.
They are funded through the program you are describing, the Administration on Aging
and the Centers for Medicare and Medicaid. Are you aware of ADRCs?

Speaker: Mrs. Cathy Fikes
Like I said, I'm sort of new here, but my supervisor, Elaine Taverna, could help you.

Speaker: Panelist
I will follow-up with her then. It's a great resource that has been developed, but most
people know it because of the focus on aging. I just want to encourage people to keep the
combination of aging and disability together when they see things like aging and
disability resource centers. Thank you.

Speaker: Commissioner Lewis
Thank you. [Applause] You did a good job. Okay. If we could have Elaine Taverna. I
guess we will be able to get that follow-up question in there. And then we have Mrs.
Mary Hogan on deck.

Speaker: Mrs. Elaine Taverna
Hi. Should I go ahead and answer? Should we have that discussion maybe?

Speaker: Commissioner Lewis
Why don't you start.

Speaker: Mrs. Elaine Taverna
Okay. Yes, we are aware of ADRCs, they're funded through area agencies, but it's a
collaborative effort between organizations that provide services to people with
developmental disabilities as well as people with physical disabilities and older adults.

I think what Cathy was trying to get to was we all kind of need to work together. The
system is a little bit more streamlined. Families don't have to go to five or six different
places to get the help they need when they are living together and there are multiple
kinds of needs within a household.

                   Detroit Listening Session Transcript (Rough Edits)                         64
                                   December 2, 2010
Hi. I'm Elaine Taverna. I work for community living services with Cathy. It's a nonprofit
organization serving people with development of disabilities. We also serve people with
physical disabilities and adults age 60 and over in southeast Michigan. I am not here to
promote my organization, but I'm here to talk a little bit about some of my experiences
working within the field and working with people with developmental disabilities.

The supports and services that my organization provides are really based on the
principles of self-determination, and you've heard a little bit about that here today, so
they are based on the principles of self-determination and person-centered planning.
They are really geared towards assisting people, all people, even people with the highest
needs or the most significant kinds of needs. It's not just for people who can take care of
themselves, but everybody.

To have really complete authority and control over their support and resources, have a
life they desire, and live within their own homes and their own communities. But we
haven't always operated that way. I have been with the organization a long time, so I've
seen the way it was before and the way it is now. Our company has been in business for
25 years. We transitioned from a facility group home based model, more of a medical
support traditional model, over to a model of serving people that is fully person-
centered and self-determined.

I have had first-hand experience. I started out working as a support coordinator or case
manager. I've been able to witness some of what you've heard today with the personal
testimonies, the real positive impact and the change that has been made in the lives of
people who were living in more traditional kinds of situations where they really didn't
get a say in how they lived in who cared for them and what they wanted in life, to
moving over to a situation where they have full authority and control over all aspects of
their life, including their funding. I've been able to witness that.

I wanted to talk a little bit about that today. Medicaid and [indiscernible] kind of frame
it in regards to the statistics we heard at the beginning. The population is aging. The
baby boomers are turning 65 this year, in 2011. It is a significant need. People are
growing older, and many of the caregivers of folks with development of disabilities are
aging as well.

We have multiple needs within family homes, so this is, what I really want to talk about
is this system change and how important I personally think it is and I've been able to see
how important it could really be to the system as a whole, the system of long-term care
helping people. Over the past 10 years, we've been able to gather information, kind of
what you would call hard data, that kind of shows that people who have lived in more
traditional situations and compare it to when they moved to a situation where they have
full authority and control and achieve real outcomes in their life, and when we look at
real outcomes, what we are talking about is good health, a place of your own,
community membership, real relationships, economic security that can come from
generation of private income, and everyone can generate income.

                   Detroit Listening Session Transcript (Rough Edits)                    65
                                   December 2, 2010
It improves lives, and it costs less than the traditional support services. We actually have
been collecting data and looking at that. We've been able to show that it improves
people's self-determination, improves people's lives. It actually costs less. We've also
heard some of the soft data here today. You've heard the personal stories. Those are so
important. And you've heard of the positive impacts self-determination can make in the
lives of people. When we look from where we sit. The waiting list for services are
growing as people with disabilities and their caregivers are aging and needs are
intensifying. So the need for publicly funded services is increasing as never before.

It's even more important to do more with less. Health care reform is on the horizon, and
it's time that we all work together to improve the system. We think self-determination is
the solution. We would ask ADD we ask your organization to consider the testimonies
you've heard along with some of the hard data. I did submit some slides. If you don't
have them, I can make them available to you. I made hard copies because I wasn't sure if
they would get through on the system today. Take a look at that. Think about what
you've heard, and we would really hope that you would invest in projects that expand
and build capacity in these kinds of supports where people really have true authority
and control over their lives 4and over their funding, and the system of funding is flexible
enough to support self-determination. [Applause]

Speaker: Commissioner Lewis
Thanks, Elaine. I think you've really described a very important problem that we are
going to confront increasingly in the next several generations, decades. And the need to
bring self-directed services into long-term care. I guess--my question would be this. If
you have to bring about systems change and integration between Health Care,
developmental disabilities services, and long-term care system, and you are asking ADD
to play a coordinating role in this, is there a starting point that you would suggest for a
fundamental Center point that you want to leverage?

Speaker: Mrs. Elaine Taverna
Yes. I would kind of look at -- I am not totally familiar with exactly what kind of grant
opportunities and the things you might fund. I would say that maybe you want to focus
on where they are building capacity. There are demonstration products in areas where
there are long-term care systems collaboration, where the self-determination aspect is
being expanded within multiple systems who are partnering and collaborating to make
this happen.

Some of us in Michigan are working together, because this is starting here in Michigan.
We are one of the last states to implement that. We are always working with aging and
long-term care, but what we are also doing, because of the changes in reimbursement
with Medicaid and readmission to hospitalization, Healthcare -- for-profit healthcare
are is very interested in working with community systems right now. So, we are
collaborating and working with the for-profit Health Care systems to design kind of a
self-determination model of support from the point of when someone's in the hospital or
ends up in a nursing facility and comes out. The system as a whole is working together
to support that person to return home, move out of nursing facility, and then stabilize in
the community with these kinds of supports we described. Thank you.

                   Detroit Listening Session Transcript (Rough Edits)                    66
                                   December 2, 2010
Speaker: Commissioner Lewis
Thank you very much. [Applause] If we could please have Mrs. Mary Hogan up to speak,
and we have Ms. Emma Avery on deck.

Speaker: Mrs. Mary Hogan
Good afternoon. Thank you, Commissioner Lewis, for permitting me to address this
Summit series today. I appreciate the opportunity to come here. I've come from Maine
to participate, so it's a real honor. My name is Mary Hogan, and I'm one of eight older
siblings of the late Bill Hogan. I appear today in honor of my brother and hopefully for
other families who are facing the challenges relating to Down syndrome and Alzheimer's

My brother's life was very, very rich, but he did face with relentless good humor,
multiple surgeries, and medical challenges often experienced by individuals with Down
syndrome. These challenges increased as he aged more rapidly. A phenomena
experienced by people with Down syndrome. In January 2006 at the age of 45, Bill was
diagnosed with dementia Alzheimer's type. Over the course of the next four years, his
journey became far more complex. He experienced a very rapid deterioration during the
last 13 months of his life and died of chronic aspiration pneumonia on February 25th of
this year, two months shy of his 50th birthday. My brother was a member of a sub-group
of individuals with Down syndrome that develop Alzheimer's disease early, decline
rapidly, and face premature death. This has been a great loss for our family and for my
brother Bill's community at large.

Extraordinary efforts to advocate for Bill were required during the final years of his life.
Active advocacy was sometimes lonely and often a very frustrating process. Obstacles for
advocacy increased very significantly after Bill's diagnosis of Alzheimer's disease. I think
that our experience as a family is most likely replicated in other families as well. Since
Alzheimer's for individuals with Down Syndrome are at increased risk for developing
Alzheimer's disease, families, caregivers, and medical providers and researchers as well
must work together to maintain their quality of life.

I appear here today to present the following vision of the future. This is what I see.
Efforts will be made to update best practices for support and services for aging
individuals with intellectual disabilities, developmental disabilities, and Alzheimer's
disease and related dementias. This has been suggested at a previous listening session
by Matt Janiky. Most importantly, though, what I would see is that in the future best
practices are not a written document but an implemented reality.

My second vision of the future would include regional model communities, which will be
funded by federal or state agencies to demonstrate the ability to implement best
practices quickly and with cost effectiveness. Specialized dementia care group homes
serving four to six residents will be established to provide continuity of care in a
homelike setting while maintaining quality of life and utilizing well-trained staff. This is
probably one of the most important issues for me, because in my journey as an advocate
for my brother, our resources were very limited.

                   Detroit Listening Session Transcript (Rough Edits)                     67
                                   December 2, 2010
I'm suggesting to you that a consortium of providers develop a much-needed brochure, a
written document, on Down syndrome and Alzheimer's disease enabling families to
access information both about disease process and advocacy. I suggest a review of what
has been produced in Australia as a sample of what might be accomplished here. I also
suggest a review of what's been made available in Scotland with review in hopes that we
could duplicate something the same. I submit to you some preliminary efforts that I've
made in creating such a document as well.

Lastly, medical and nursing school curriculums will require competence in the provision
of care to intellectually and developmentally disabled populations including those with
dementia. This population will no longer be marginalized and Health Care disparities
will be eliminated10 years after the Surgeon General's 2002 initiative to close the gap
and improve the health of individuals with intellectual disabilities. I refer you to the
learning by living program at the University of New England, College of Osteopathic
medicine, with the hopes of similar instructional models to be considered, promoted,
and funded, targeting the ID population.

In conclusion, as you look at your five-year strategic plan, I ask you to recognize the
need for improved dementia care for individuals with intellectual and developmental
disabilities in conjunction with increased support for family members as caregivers and
advocates. And I thank you for this opportunity today. [Applause]

Speaker: Commissioner Lewis
Does anybody have a question?

Speaker: Panelist
I was just wondering, if you could describe the similarities or what brings you to the
model programs in Scotland and Australia? Do they share any commonalities?

Speaker: Mrs. Mary Hogan
Yes. I think what I was looking for when I was advocating for my brother was very
specific ideas about in what domain can I advocate. I cannot change the disease process,
but I certainly could figure out areas in which I could help. I used, for instance, brother's
response to people helping him dress. The conclusion was that he was acting out
because he was -- he had dementia. When, in fact, he was acting out because he had
broken ribs.

It leads me to say that once a diagnosis of dementia is made, I think there are a lot of
conclusions that are made that are an accurate. I sought help for the opportunity to
improve the quality of his life, so I couldn't do anything about the disease process. I felt
that the resources that I looked to often wanted to avoid the topic of Alzheimer's in this
particular population. It's a very difficult part of life to have to cope with. Therefore, I
looked around the world - and Matt Janiky actually referred me to the documents in
Scotland - and then he in turn used what I had produced and gave me a contact in

                   Detroit Listening Session Transcript (Rough Edits)                     68
                                   December 2, 2010
The people in Australia have developed a fabulous document on Down syndrome and
Alzheimer's disease. It's very user-friendly. It gives families pointers and describes the
disease process in a useful way. It also makes some suggestions about advocacy. I've put
together a small document of my own, and it really reflects my journey with my brother
and all of the obstacles we faced. Oftentimes within the medical community and also in
terms of his living in his group home at the end of his life and how we could
accommodate him with out further traumatizing him. I leave that with you as well.
Thank you.


Moderator: Kate Fialkowski
Thank you. [Applause] Our final speaker in the aging group has not arrived, so we are
going to go ahead and move on to our next topic.

Our final topic is on supports. Supports from families, caregivers, professionals, and
other allies. ADD posed the following question. Over 75 percent of people with I/DD live
with families often with aging parents. Direct support workers usually earn very low
wages. Families and caregivers often struggle to access any level of formal support at all.
How can we address the future caregiving and support challenges of communities,
families, and the allies who care about people with developmental disabilities?

[Support Testimonies]

Speaker: Commissioner Lewis
If we could please start with Mr. Ron Irvine, and we will have Mr. Andre Robinson on

Speaker: Mr. Ron Irvine
Thank you for this opportunity. It's good to be here. I am Ron Irvine. I've spent 25 years
working in special education. The last two years I have been a micro enterprise specialist
on the adult services side with people with developmental disabilities. I don't know what
I'm good to be when I grow up, but I'm loving everything I've done so far.
[ Laughter ]

Part of what I did that really fired me up about working with people with disabilities in
education was the transition piece and helping families figure it out, although on the
education end, I'm seeing from the adult side how much we really didn't know. The
frustration of these families that are becoming good friends of mine, I've got a lot of
suppers from those deals, because I want to learn with them as they go through the
process. Some of the things they said to me are it's like there's a huge wall between
education and adult services.

                   Detroit Listening Session Transcript (Rough Edits)                   69
                                   December 2, 2010
At least that how, that's how it feels less. Specifically, the developmental disabilities end
of things. At an individual education plan meeting, the father asked for help to find the
right services. I witnessed the supports coordinators respond, well, it's my job to
authorize his services, so when you figure out what services you want, just let me know
in I'll authorize them for you. It was too a very bewildered set of parents.

Another father said to me, well, we've gone to all the trainings we can find on housing
and self-determination, but the system just seems too complicated. We need a shepherd.
I thought, I kind of held onto that word because it is very complicated. A lot of times the
families are hearing things like, here's this option, this option, and this option. Pick one.
What fits? Rather than building the plan around the person.

One other thing that another father said to me is if I need a new car, I don't ask a car
salesman which car I should buy. I go to the experts that I trust that are independent
sources of information, then I go to the car lot with the plan in mind and knowing
exactly what I want, and then I buy. We do it backwards.

We go find out what the options are and we let the salesman decide for us in adult
services. Now, these are people's lives that were talking about. Let's see. Some of the
solutions that I see that we really need to work on, and I'm not sure quite how this will
work with your strategic plan, but we really need to support families to understand the
system and support them with authentic person-centered planning facilitation. It needs
to be done upfront. Not after you get in the system and are having services that you
don't like. Independent facilitation is one way to do that.

It needs to be widely available, but not just a checkbox on a planning document. That's
what I see it as. That's the only independent facilitator I've ever seen is this box. I've
never seen a person in our county. That's not good. Families need ways to network with
other families so they can create advocacy among themselves and so that they can help
their own adult children become better advocates also.

In conclusion, no family should have to approach the system which is already too
cumbersome and too complicated without adequate preparation and planning. Prior to
approaching the CMH system for services, families need to be given adequate resources
and training. They also need to plan already worked out prior to asking for services
using authentic person centered planning processes like maps and paths and group
person-centered planning, et cetera. [ Applause ]

Speaker: Commissioner Lewis
Thank you. I guess my question is, how would you suggest that we do that? [Laughter ]

Speaker: Mr. Ron Irvine
Well, this is what I'm envisioning. Just starting with the collaboration of advocacy
agencies and families that want to be involved and collaboratively we can offer a
community learning Circle monthly for families to start learning about housing and
about different employment options and the different services out there. We bring in
experts to show them how it works and what's available and what steps you need to take.

                   Detroit Listening Session Transcript (Rough Edits)                      70
                                   December 2, 2010
Also, I really love John O'Brien and his person-centered planning process that he does
in the Toronto Summer Institute. As a group person-centered planning process that is a
very authentic effective process that can be used and that can be interwoven with this
learning circle that comes together. And then if they need to spin off into individual
planning with each individual person and their support circle, that could be done also.
We just need to put it together and start doing it instead of just letting them flounder.
Thank you very much. [ Applause ]

Speaker: Commissioner Lewis
If we could have Andre Robinson and then we will have Ms. Emma Avery.

Speaker: Mr. Andre Robinson
Good afternoon, everybody. As you can see, I guess I'm the perfect prototype of
community inclusion and self-determination. As a person who uses system services. I
have a mother and father that was older when I was born, and when I was little, they
went through some trials and tribulations with me. A lot of times they didn't know what
was going on, because I was born in 1969. It was like, wow, what's going on here? But as
I got older and I started advocating for myself, and I have a big mouth, just moving

Actually, I went through school and I made it through school and ironically I got a
college degree and stuff. It was a process of having to be on my own and getting myself
through the system because my mom was older. In 2005 I ran into the community living
services, through Wayne County Community health, and I started advocating for myself,
and they would ask me to advocate for other people.

In 2007 I was hired as a consultant through Wayne County community health, and I
work at community living services. To make a long story short, I love to advocate. Now
I'm a trainer. I train direct care workers and train social workers and train whoever else
wants to know about disability. I also have my own micro-business. As a matter of fact, I
have my card that I will give to each of you.

But to find out where I came from when I was a kid in 1970 up until now, which I just
turned 41, and by the way, I would like to give a shout out to myself because at the end
of my parents’ life, I ended up taking care of them. I ended up making the funeral
arrangements and doing everything for them, which they thought I wasn't going to be
able to do. In the end, I am the chairperson of the Michigan developmental disabilities

Anybody who has questions and who wants to talk, we can. I've got thick skin. I am also
a co-chair for the Wayne Regional Advocacy Council, which is supported by the
Developmental Disabilities Council. Thank you. Have a nice day. [ Applause ]

Speaker: Panelist
Thank you. Thank you so much for your speech or presentation. You said you train
social workers. If I could just have a little teeny description?

                   Detroit Listening Session Transcript (Rough Edits)                      71
                                   December 2, 2010
Speaker: Mr. Andre Robinson
Okay. As a matter of fact, I have a journey of a man with a developmental disability; I
have a presentation about my life, about where I came from. Also, busting through the
system, my former boss is in the audience right now. He helped me go through that. We
have about three or four presentations that I have my own perspective from a self
advocacy. Also, because I worked, I developed certain things that I see that could be
improved in the whole system as a whole. If you need my help, I would be willing to help
you collaborate with you to kind of develop some stuff.

Speaker: Panelist

Speaker: Mr. Andre Robinson
Thank you. [ Applause ]

Speaker: Commissioner Lewis
Great. Next, we have Ms. Emma Avery. Following up Ms. Avery we will have Rita, I'm
going to blow this one. I can tell right now. Rita Wieresma will be on deck. Ms. Rita
Wieresma will be on deck. Thank you very much.

Speaker: Ms. Emma Avery
Good afternoon, everyone. Hello. I am happy that I was selected to share my story with
you and share some of my expertise with the group and do everything that I can to help
others. As you heard, my name is Emma Avery. As a matter of fact, I have been an
amputee for forty six years yesterday. I'm kind of not getting used to keeping up with a
date now, because it's kind of getting to the point where I don't focus on that too much
like I used to.

My accident happened when I was 16 years old, and I didn't know anything about what
had happened to me until waking up in the hospital. I was told that I had been run over
by a freight train. The things that I heard when I woke up in the hospital telling me that
I would never walk again and it wouldn't be able to do this and I wouldn't be able to do
that, and the words I kept hearing was, handicapped. If I hadn't gone through what I
had gone through. I'm just trying to figure out, what does this word handicapped mean?
I knew then I didn't like the sound of it. Eventually, I looked it up and I said, oh, no, this
is not me. I proceeded at that time to make my own pathway in life.

I learned how to use both prosthesis and use them very well. I also learn how to drive a
car without hand controls. The reason I am in my wheelchair right now is my knee. I am
working on getting back up on my prosthesis. I have been in the community doing a lot
of things. I worked at the Center for Independent living for seven years as a class
facilitator, as a motivational speaker, and as a peer counselor. Since leaving there, I am
also working as a life coach, because there are so many people who just need someone to
listen to them, and I have no problem listening to people telling me their stories and
helping them to find a brighter solution to whatever they feel is going wrong in their

                    Detroit Listening Session Transcript (Rough Edits)                      72
                                    December 2, 2010
I was given the name Sunshine by one of the men that worked in the apartment building
where I used to live, because he always brought his problems to me. I would always give
him a better way of looking at it. One day he started calling me Sunshine. I'm trying to
figure out who he is talking to. He said, I'm talking to you. I said, my name is not
Sunshine. He said, to me it is, because you always make things so sunny and bright. I
said, okay.

I've gone on from that. I've written my own autobiography. I have a few copies with me
if anyone would like to get one. [ Laughter ] And for those who are not able to get a book
today, I can give you my card and you can go to my website and pick up your own copy
and I would be happy to autograph it and mail it out to you. And I'm also working on my
second book. I also have my own business at home. I also do nails. So there are a lot of
things that can be done to help people. I feel like this is one of the things that I was left
on this earth to do is to help people.

As I age, I feel great to tell you that I am 63 years old and loving it. [ Laughter ] And I
love my gray hair, and I'm not going to change it. Thank you for listening to me. I hope
I've said something that can inspire someone. If you get my card and you feel down, give
me a call. I have no problem in listening and talking. Thank you very much. [Applause ]

Speaker: Commissioner Lewis
Emma, thank you. You are indeed a ray of sunshine. That was terrific. In your notes, you
said that training and educating caregivers is a really important element, and I would
just like your thoughts on what we can do to help make that a reality.

Speaker: Ms. Emma Avery
Training of people who give care to other people, whether you have any type of
disability, I feel they need to be trained in understanding compassion and love and care,
because I like to listen to the news and then I don't like to, because I hear so many
things. When I hear of someone doing something to an elderly person or to someone
who has a disability, no matter if it's physical, mental, or whatever it is, it really bothers
me. Because I love all people, no matter what your race is, creed, color is, but I love
people. We are supposed to love and care for other people. I feel that that is one of the
main things that we need to train people in is loving and caring for people. Period.
Thank you.

Speaker: Commissioner Lewis
Thank you very much. [ Applause ] Great. We have been Rita Wieresma and Ms. Sharon
Cole on deck.

Speaker: Ms. Rita Wieresma
Thank you. Thank you, Commissioner, and panel for allowing me to speak here today.
Today I wanted to just talk a bit about support professionals and finding support out
there. I really wanted this to be geared not only to providers who are looking for support
care professionals but the individual who is looking to hire for themselves.

                    Detroit Listening Session Transcript (Rough Edits)                      73
                                    December 2, 2010
My name is Rita Wieresma. I'm an executive director of Lutheran Services of Wisconsin
and upper Michigan. We are a longtime agency that does a multitude of human services.
We partner with Lutheran services in America in the disability network. Most
importantly, I have the honor of being a parent to a daughter named Dana who is 26
who just happens to have a disability. Her disability doesn't define her. She does require
supports to maintain her life and be as independent as possible.

My daughters name is Dana. Dana chooses to live away from home and made that
choice shortly after high school. To her, graduation meant moving out and on to
employment, just the same as heard siblings did when they graduated. Dana currently
lives in a home with two other ladies where she has a lower end, lower level of a duplex
and they have the upper level of the duplex. They have support staff. Here's the thing.
She has no choice in who her staff are. She does not choose when they come and go. She
doesn't choose who supports her versus the other ladies, or if she doesn't get along with
somebody, she doesn't say, no. She doesn't have that right to say no, you can't support
me. Her staff are low-paid, receive minimum benefits, and when she gets a good one
who she connects with, they don't stay long.

This story is repeated every day in our work life at LSF. We struggle to recruit people
into meaningful jobs serving individuals with disabilities. People do not see it as a career
path or a future for themselves. The wages are low, the cost of benefits are high. For
people who earn $9 an hour, most of the time they cannot afford the benefits. There are
few wage increases and not dollars from funders to support either benefits or wages.
Typically, when the economy is down like it is now and unemployment is high, we
benefit from that.

But that's not true this year. It has not been a positive impact on our ability to hire. Even
the extended unemployment benefits have impacted our ability to hire staff or draw
people's interests to low-paying positions. This is a position of great responsibility to
care and support our loved ones. We know the statistics for the demand of DSPs will
only grow in the future. This isn't a new problem. It's been around a long time. It's been
discussed for many, many years. Sadly, we haven't had the ability to impact it yet.

Some suggestions for impact: Medicaid does work for funding for people with
disabilities. But the reimbursement rates or increases aren't necessarily geared at wages
for DSP. Could we implement a program or work with states to provide services and
support incentives that would be directly geared at wage increases for DSP level work?
This could also be geared at training dollars. Student loan forgiveness plans for people
working in the disability field at multiple levels. Current wages do not support the
abilities for students or past students to repay loans. And that is a deterrent to enter or
to stay in the field. That's not only at the DSP level but at leadership level two.

                   Detroit Listening Session Transcript (Rough Edits)                     74
                                   December 2, 2010
How about developing a national system to uplift the DSP physicians? Whether you call
people direct support professionals or care workers. It's the same thing. Could we show
the importance of this work? Have a recruitment, a marketing plan, a job identification
system that could be nationwide that would help all providers for people looking for
direct care workers to get their positions out there. A one-stop shop for national
marketing maybe. And maybe some grant funding or some type of pay for performance
that could be geared at referral incentives, recruitment, performance incentives, hiring
trainers, mentoring systems, and discontinue the use of temporary staff systems. There
are no easy answers. There's a lot of them out there. A lot of issues out there. But I
believe working together we can find a way to address this. Thank you.
[ Applause ] Thank you.

Speaker: Commissioner Lewis
Thank you, Rita. I think the issue you are pointing to is going to become, it is already a
national problem and it will become an increasing problem. Can you make any
recommendations about other organizations or fields with which ADD might partner
with in taking a look at the issue of DSPs? I'm thinking of, certainly, disability, mental
health, aging.

Speaker: Ms. Rita Wieresma
Yeah, and I think it is all of those along with probably other systems that don't have
state or federal employees involved because it is at the non-profit level or other provider
levels that we see the inability to pay or have benefits that are cost effective for people. I
think that that is a route to go about how we can pair those agencies up to begin to
address the issue.

Speaker: Commissioner Lewis
Thank you very much. [ Applause ] We have Ms. Sharon Cole, and then we have Mrs.
Patricia Cloppert on deck.

Speaker: Ms. Sharon Cole
Hello. My name is Sharon Cole. My title, which I love, is I'm Jeff Guthrie's mom. I am
grateful that the Administration of DD is taking the time to seek suggestions from
people receiving support and from family members. I am here today to speak on behalf
of my family and my son, Jeff. Jeff has a developmental disability. I would like to share
with you on how self-determination has made a difference, a huge difference, in Jeff's
life. And his family's life.

My son, Jeff, has had his share of struggles in his life, but he has always persevered. He
kept his passion for bettering himself. In 2007, Jeff found himself at the age of 44
unemployed and living at home, not exactly where he wanted to be. We wanted to
support Jeff's desire to move out and be more independent, but we knew he would need
support to be successful, and we didn't see how the more traditional group model is the
right option for Jeff, and Jeff agreed.

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                                    December 2, 2010
It was Jeff who actively sought out information about self-determination. He
volunteered to be involved in countywide workshops and conferences promoting the
progressive model of supporting people, and he knew right away that it was the right
choice for him. When I learned more about self-determination and participated in his
person-centered planning meetings, I could tell that the focus was different. Most
importantly, I could see the difference in the way Jeff felt about himself. It was obvious
that Jeff was being asked what he wanted and that his wishes and choices were being
heard and respected.

This is what every mother wants for their child. A plan was put in place to help Jeff
transition to his own apartment. Shortly after he moved in, he was also became
employed in a job he loves and has maintained that job for three years now. Jeff has also
developed public speaking skills, and has become a statewide leader in the promotion of
self determination. These are all accomplishments that make us very, very proud of Jeff.
Pursuing a life of self-determination has helped Jeff develop a higher level of
confidence, a sense of purpose, and an expanded circle of support. And an ability not
only to speak for himself but also an ability to speak to others.

As a parent, it's been a wonderful transition to see Jeff Grow and strive in his transition.
As an aging parent, it has given me a peace of mind. I ask now that you continue to
promote and advance self-determination as an option for people with disabilities so that
other families will no that there are community-based options for an active, healthy, and
happy life for their loved ones. Think you are listening to what I am proud to say is the
story of a young man who has set goals and struggled and was a winner. [ Applause ]

Speaker: Panelist
I like to thank you for the comments; because I love it when I hear parents talk about
how their loved one has grown and how self-determination has helped their life. What
advice would you give to other aging parents who struggle to believe that their kids, that
their adults can become self-determined?

Speaker: Ms. Sharon Cole
I wasn't ready for that. [ Laughter ] I had something else lined up. [ Laughter ] Can I
read my answer to another question?

Speaker: Panelist
You would like to ask me something else, would you? [ Laughter ]

Speaker: Ms. Sharon Cole
Anyway. Because we are so worried about what's going to happen to our children when
we no longer can care for them, it is very important parents to understand that there is
services out there that can help that individual become more independent, and
becoming more independent means that that individual will have a quality of life after
we are no longer there to support them. Thank you. [ Applause ]

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                                   December 2, 2010
Speaker: Commissioner Lewis
Okay. Could we please have Mrs. Patricia Cloppert, and we have Mr. Tony Thomas on

Speaker: Mrs. Patricia Cloppert
Commissioner Lewis, Commissioner Ruttledge, distinguished panel members; I am Pat
Cloppert, the program manager for parent and family support at the Nisonger Center
UCEDD at the Ohio State University. I have served in a LEND family faculty position at
Nisonger for 10 years. LEND is leadership education and neuro-developmental and
related disabilities.

My husband and I are aging caregivers. We have three grown sons, two of whom have
autism spectrum disorders. John, 33, who has a limited communication in self-care
skills, lives in supportive living in a house in the community with a roommate but has
also received services from care providers in our home. Our youngest son, Brian, aged
27, has Asperger's syndrome, works part-time, and lives with my husband and me. Both
have Medicaid waivers.

We know the value of devoted direct support workers and the difficulty of finding and
training new staff. While I obviously heartily endorse independent or semi- independent
supported community living and participation, I recognize that in-home care is not only
the place where most adults with developmental disabilities live, but it's also the most
economical choice.

Several options should be explored. First, I suggest improving the pay of direct support
workers by combining developmental disabilities and aging funding streams for those
who can serve both populations in the same setting, i.e. in the family home. The pay and
adequacy issue also makes parents and adult siblings fear that appropriate support
people for their family member may not be available or staff turnover may be excessive.

Another suggestion to consider is training higher functioning adults with developmental
disabilities to provide some supports for their aging parents or other senior citizens in
the community. A remote video resource monitoring person could be alerted to issues
requiring immediate response and could answer general questions that may arise. Many
of us have heard that one of the biggest benefits of Meals on Wheels is the social contact
for otherwise isolated seniors. So a companion relationship may prove mutually
beneficial for seniors and some people with developmental disabilities.

Care across the lifespan can be enhanced by involving relatives and particularly siblings
or designated close friends to be consulted by resource persons to address both long-
term planning and short-term problem situations. Eight years ago, I was intricately
involved in developing a model social vocational support program for higher functioning
young adults on the autism spectrum at the Nisonger Center, it's called Aspirations.

                   Detroit Listening Session Transcript (Rough Edits)                   77
                                   December 2, 2010
Our experience has shown that the needs of this population are great for expanded
support networks, vocational advocacy, and community inclusion. Too often their
strengths disguise series adaptive behavior issues and emotional fragility. As the
numbers of adults identified with this profile continues to grow, I think it is incumbent
on those involved in strategic planning to review eligibility screening methods. While
many of these individuals are capable of success in independent living situations, they
would benefit greatly from a modicum of support to reduce their anxiety and address
social stressors they confront on a daily basis.

In many cases, it seems that timeliness in addressing issues is almost as important as
the quality of the intervention. The longer they wait for support in a difficult situation,
the more likely that situation is to escalate to a crisis. I urge your attention to this issue.
Thank you for your time. [ Applause ]

Speaker: Commissioner Lewis
Patricia, thank you. I appreciated your comments and kind of connecting the dots for us.
That was really helpful. I want to go back to one of the innovations or suggestions that
you made about the potential for doing something like remote video resource. Are there
other ways that we could use technology where we could increase employment in people
with significant disabilities as well as find more innovative ways of being able to provide

Speaker: Mrs. Patricia Cloppert
Yes. As a matter of fact, I'm glad you asked that question. The Nisonger Center recently
received a very large grant in higher education to combine postsecondary education for
people with intellectual disabilities and employment experience at the university. They
plan to incorporate the use of technology in various kinds of prompting modes to fade
supports over time and to help individuals adjust to different situations, so that's one.
With regard to the remote monitoring, I'm not sure how often that comes up in other
states, but I know that Ohio recently has submitted to CMS.

There is a potential for overuse of remote monitoring, but there are individuals who
prefer not to have another person in their house. While I recognize that could be over
utilized, I think it has potential for certain situations. There is also the earpiece
monitoring to prompt people into social situations in addition to the iPad/iPod
approach to addressing various kinds of scenarios and having a resource to be prompted
how to get through that situation.

I appreciate that, because I can think back to several years ago on individuals who
became employed. What they did for their employment was they regularly called people
to just have that connection. It really allowed for a decrease in direct support services
because it allowed a person to have somebody they could talk to everyday. I just think
that we need to keep thinking differently about how we provide support to the folks and
think about ways to create employment for individuals where we use more technologies.
I appreciate that. Thanks very much.

                    Detroit Listening Session Transcript (Rough Edits)                       78
                                    December 2, 2010
Speaker: Commissioner Lewis
Thank you. [ Applause ] Could we please have Mr. Tony Thomas and then we have Dr.
Roger Fortener on deck.

Speaker: Mr. Tony Thomas
Great. A couple quick observations before get started. My name is Tony Thomas. I am
President of the Ohio Alliance for Direct Support Professionals. Hello to everybody
today. Two quick observations. One is that -no offense to the parents or professionals, I
am under the professional category, but the self advocates today completely ruled the
world. It was amazing Absolutely amazing. [ Applause ] Congratulations to John and
Renee and Teddy and David. Also to my colleague from Ohio, Carmen, she did just an
outstanding job. The other thing is, they also came in under times more frequently than
the rest of us did.

Again, my name is Tony Thomas. I am president the Ohio Alliance for Direct Support
Professionals; we are one of the largest and successful programs in the country for DSPs
who work in the disability world. I am also a board member for the National Alliance for
Direct Support Professionals, I have just recently helped the NADSP launch their
national credentialing program for direct support professionals in the disability field.

In my one and only paid job, when I have time to do that, I am Executive Director of
Welcome House in Cleveland, Ohio. We are a residential and community support
agency serving 145 people and employing a staff of about 255, most of those are direct
support professionals. In Ohio, our credentialing program has existed since 2003 when
we started in only three regions of the state. We now have close to 1000 people who
have touched our program in some way in Ohio, either as a direct support professional
or as a frontline supervisor. We are fortunate to have the support of the State DD
Council in Ohio and also recently the Ohio Department of developmental disabilities.

While we have many graduates and run a very successful program, we have two state
agencies supporting our efforts. We do not have one very important enhancement. You
know where I am going with this one. A way to successfully reward or incentivize our
[indiscernible] who achieve this wonderful advanced training and education. Our state
director said at a state conference, John Martin, stated that one of his greatest
frustrations has been his inability to find ways to increase DSP wages for those who
work in Ohio.

I consider the wage issue to be our most important agenda item. It's our goal in the next
year. Whether it is a local, state, or national agenda item, to me it can be debated. I think
it is a shared agenda item for all of us, but much responsibility must be initiated by the
federal groups and federal agencies that currently fund services for persons with
developmental disabilities. Without suitable attention to the wage issue, we will lose
ground on all the tremendous success that we've achieved in this field for those
individuals who are living and working in the community today.

                   Detroit Listening Session Transcript (Rough Edits)                     79
                                   December 2, 2010
I offer consideration to the panel and to all of you the opportunity to work with two very
important departments that would also collaborate on this wage issue. The Department
of Labor and also the centers for Medicaid and Medicare services. With the goal in mind
of trying to look at ways of enhancing DSP wages and benefits and also provide some
suitable incentives for training. With those other federal departments working together
with the Administration on Developmental Disabilities, offer five objectives. Fund or
advance proposed legislation targeted to supplement DSP wages and training initiatives.

Number two, fund already existing pieces of legislation that targets frontline staff who
earn less than a living wage. Number three, consider funding a project of national
significance that targets both training and wage issues for DSP staff. Number four,
support the growth and expansion of accredited training and educational programs that
offer DSPs opportunities to learn, to develop suitable and advanced skills in their field of
practice and then earn greater compensation for achieving that distinction.

Finally, number five. Assist states to develop similar targeted strategies for increasing
DSP wages that use federal funding along with some potential state funding that could
make an impact in our field. Some states like Ohio might be very interested and eager to
work with you on that. Finally, I respectfully ask that you think about how to help us
finish the mission of community living. In Ohio we are eager to work with you and
support your initiatives. The future success of persons with disabilities depends on us
working together with ADD and other state and federal departments. Thank you very
much. [ Applause ]

Speaker: Commissioner Lewis
Jim or Betty, do you have a question? No questions?

Speaker: Panelist
In looking at this whole wage issue, how do you take a look at the wage issue with the
larger, macro-economic trends in the country? I mean, can you really pump up the
wages of DSP on a state-by-state level given the influences of worldwide labor market?

Speaker: Mr. Tony Thomas
You can. I believe that right now with what the states are at struggling with is their own
budgetary issues. For the state to actually take on that initiative, and Ohio did that about
10 years ago, but has not been able to do that since then. The wages in Ohio have been
relatively stagnant since that point. I think what it is going to take, Jim, is the idea that
federal and state organizations have to partner together. I see that as the only
opportunity. I believe there are some ways through working with the centers for
Medicaid and Medicare services to actually do that. And Charlie Lakin and your
colleague at the University of Minnesota has published a paper that had actually
addresses some ways that using Medicaid administrative dollars that there's a
possibility of doing that. That's going to take partnership between that state and the
federal government and the federal agencies to do it. I believe it can be done. Thank you.
[ Applause ]

                   Detroit Listening Session Transcript (Rough Edits)                     80
                                   December 2, 2010
Speaker: Commissioner Lewis
We have Dr. Roger Fortener, and we have Dr. Chaz Moseley on deck.

Speaker: Dr. Roger Fortener
Thank you, Commissioner Lewis and members of the panel. Thank you for the
opportunity to speak at this envisioning the future program. I appreciate it. I am going
to follow a little bit of Tony's lead. My name is Roger Fortener. I'm a psychologist. I'm
the Vice President of the Ohio Alliance of Direct Support Professionals, and the
Associate Director of Anne Grady Services, which is a non-profit agency that provides
services to people with intellectual and development disabilities in Northwest Ohio.

I know the backbone of our agency and many of the agencies that I know of that provide
services to people with developmental disabilities are the direct support professionals,
the Ohio alliance of direct support professionals does have an educational program. It's
called PATHS.

PATHS stands for Professional Achievement through Training and Education in Human
Services. It is a program curriculum that helps educate DSPs on the best practices. The
overall goal of our program is to help people build a career path in direct support care.
We think that this training is vital in helping DSPs working with people who have
disabilities. It's a program to help professionalize the role of the caregiver. It's somewhat
like the STNA program in nursing homes, but we think it goes well beyond that. It helps
students that enter the program gain a better understanding on how to work with
someone with a developmental disability maximize their full potential. I think as we
move into the future, the number of people needing services from people in our field
and people who are senior citizens will increase dramatically.

The pool of resources to care for those individuals will be at a great demand. I think that
we in the field of developmental disabilities must be ready to meet the future needs of
the people we serve. We must have enough skilled direct support professionals to assist
the individuals we are entrusted to serve and education and training are essential. DSPs
are where the rubber meets the road in providing quality services to people with
development of disabilities.

Currently, the turnover rate for DSPs nationwide is between 45 and 70%. We must be
able to offer people who choose to make the direct support professional a career, a
livable wage. People with developmental disabilities deserve this. Having a career path
and career credentialing education program can help pave the way to professionalize the
DSP role. Many of the lives of the people with developmental disabilities depend on the
DSP, the backbone of many agencies. This backbone is needed to keep the field strong
and the quality of services excellent. Thank you. [ Applause ]

                   Detroit Listening Session Transcript (Rough Edits)                     81
                                   December 2, 2010
Speaker: Panelist
What advice can you give to people, [I'm not too good with a microphone]. What advice
could you give right now when the economy everywhere is so bad right now? What are
some of the things that you think ADD and people can do to keep up the morale of the
support group while we try to figure this wage thing out?

Speaker: Dr. Roger Fortener
Well, actually, the program that we have doesn't really look at the wages of direct
support professionals, but it offers people a chance to improve their skills and build and
professionalize themselves. I've seen it change people who are direct support
professionals. I've seen a change and go back. They actually know sometimes more than
their supervisor knows about how to do things. And I think that helps their morale. I
think being noticed and being able to show that you care for that position helps morale,
helps build character, helps build professionalism. I don't know if I answered your

Speaker: Commissioner Lewis
Thank you very much. [ Applause ] Okay. You guys have made it through the marathon
of speakers. We are down to our last speaker. Dr. Chaz Moseley, would you like to join
us up here and then we'll make some closing remarks and get you out of here. Only a few
minutes behind schedule. 30 minutes did you say? [ Laughter ]

Speaker: Dr. Charles Moseley
Commissioner Lewis and distinguished members of the panel, it's really great to be
here. It's been exciting, and Really inspiring to listen to the self-advocates talking about
what's important, what you are looking for, and the changes you want to see as well as
parents and people who provide services, educators.

I should say who I am. I am Chaz Moseley. I am the Associate Executive Director at the
National Association of State Directors of Developmental Disabilities Services. I want to
talk today about some broader systems issues. The National Association and its member
state agencies serve over a million adults and children with development of disabilities
managing over $42 billion dollars in public funding primarily through the Medicaid

The passage of the DD act in 1970 and subsequent amendments laid the foundation for
the establishment and future expansion of state DD systems across the country. The act
created the DD councils to ensure comprehensive planning and consumer involvement,
the UCEDDs to train future professionals and build a research base and the protection
and advocacy boards to safeguard individual rights and freedoms. The act launch
projects of national significance and a series of family support, self advocacy, workforce
development, and other initiatives. The act does not, however, include provisions that
connect these activities to service delivery and management.

                   Detroit Listening Session Transcript (Rough Edits)                     82
                                   December 2, 2010
As a result, planning, research, advocacy and program demonstration take place in
separate spheres. They are largely external to the day-to-day service provision and
policy planning that takes place in states. Without a direct link to the state operating
agencies, the structure can inhibit rather than facilitate needed systems change and
opportunities for innovation and productive collaboration are lost.

We believe that ADD can best impact the support system for individuals with
developmental disabilities by becoming more directly connected to the state DD
agencies that set policy, fund, and administer the support system. The current context is
important. A profound shift is occurring in the structure and functioning of state DD
systems. In the past, new referrals were offered out of home programs with slots in
institutions, in group homes, in center-based rehabilitation and sheltered settings.

Today that picture is changing. The economic recession has decimated state revenues
undermining the capacity of states to continue to support 24 hour residential services in
center-based programs. State policy is shifting away from out of home placements.
Currently, more than 58% of all people with developmental disabilities receiving public
support reside in the home of a family member.

Individual budgeting and flexible service options are becoming standard in many states.
Creating a direct relationship between ADD and the state ID/DD agencies will
strengthen the ability of the disability network to work in partnership with states to
address the many challenges facing people with DD and their families today.

Among areas of possible collaboration include building system capacity to address
growing waiting lists, improving employment rates, and improving the ability of states
to transition from school to work. To assist people to transition from school to work or
to provide effective treatment and supports to people with dual diagnosis.
Developmental disabilities and mental health needs and other conditions. Improve
access and reduce disparities in health and Health Care. Support family members as
caregivers. Develop peer support networks for self advocates and for families. Establish
a national research agenda and support evidence-based policy initiatives to assist states
in the management and development of policy. Improved data used in management by
integrating information from the current ADD funded projects with those from other
sources such as the national core indicators program. Improve workforce development,
training and support, and continue the shifts toward integrated community living and
working environments.

These are just a few of the many areas that could really benefit from a closer
collaboration between ADD and the state DD agencies. I'm stopping. Thank you very

                   Detroit Listening Session Transcript (Rough Edits)                      83
                                   December 2, 2010
Speaker: Commissioner Lewis
Thank you. [ Applause ] Chaz, thank you. I think everything that you've summed up was
just a really good way for us to end our day, and it's really forward thinking when we
start to think about research and we think about what it is that we can do to create
capacity in light of where we are at in terms of our economy. I would be interested from
your perspective -- you made a mention of evidence-based practices. Can you share with
us any examples that you know of good evidence-based practices that should be a
cornerstone for the works that we do?

Speaker: Dr. Charles Moseley
Actually, what I would like to talk a little bit more about, evidence-based practice is a
really good concept. It's solid. Certainly, in long-term support we find that many times
the concept is really reduced to looking at evidence that is only based on control group
studies, where you have one group and another that doesn't get whatever treatment.

In collaboration with the association's research committee and the AUCD and Charlie
Lakin and others in UCEDDs across the country, we are putting together an initiative
called evidence-based policy. The idea is to gather the information, the research that we
have, that really demonstrates the effectiveness of community supports, for example.
We know that people thrive in the community, and they don't do well in institutions.
Certainly, that doesn't help their ability to become productive members of the
community. Pulling that type of information together to make it available to state
administrators so that when they talk to their constituents and their stakeholders or
they talk to their legislatures about making it an innovative shift in improving
employment options, for example, for persons with developmental disabilities, or
improve self-determination and self-direction or to move to more individually based,
person-centered approaches they can document it, they can have the evidence behind
them to help them determine the appropriateness of that move.

                   Detroit Listening Session Transcript (Rough Edits)                   84
                                   December 2, 2010
Commissioner’s Closing Remarks

Speaker: Commissioner Lewis
Thank you very much. Goodness, we heard a lot today. I love this point because I have a
lot of things buzzing in my head as I'm sure many of you in the room do as well. I
thought it was wonderful to hear today the common themes and passions that I heard in
every single person who spoke today. We may not agree on how we get there, but at the
end of the day, every single person who stood up here today spoke with a level of passion
in their heart around people with intellectual and developmental disabilities, and I think
if you think about that in the terms of the historical context, and kind of stepping back,
sometimes it is so easy to look at the number of problems we have yet to solve.

But if you think about it in the context of what would this conversation have taken place
in this way, twenty years ago, fifty years ago, or what would it have looked like or how
would those perspectives have been informed sixty, eighty, years ago. It is pretty
amazing, the debate we are having at this point.

I appreciate that everyone here today was respectful. We don't always agree, and I think
that this discourse is really important. I appreciate that our panelists did a phenomenal
job of asking good questions again this afternoon. Everybody had the opportunity to be
heard. Tony actually stole one of my observations, which is, of course, the self advocates
and the people with disabilities stole the show today. And the observation that we have
actually done a phenomenal job of teaching people with disabilities about time. And
there are some parents who might learn some lessons about clocks and time. [ Laughter]

I didn't have to cut off any self advocates today, but we had to get the big hook for the
parents. So I appreciate that, too, and the lesson it teaches us. So, thank you all for
respecting so that everyone would have an opportunity to have a voice today. I think it's
useful for everyone to know about what's next. That's always the question.

We know that folks have been on the website and we've been getting information out
there and there've been a lot of questions, so to be clear, what we are doing with all of
this; as I mentioned this morning, this is the fourth of five of these regional meetings
that we are having. For each of these meetings, we are taking everything that people
have said, the information that people have provided to us online, things that have been
mailed to us, and we are putting all of it together with the information that was
presented today.

We have a wonderful team of people who stay up until all hours tonight taking all of that
information and putting it together for a group of stakeholders who have been patiently
sitting in this room today and listening, without the ability to speak, which I know for
many of them that has been a difficult challenge. [ Laughter ]

                   Detroit Listening Session Transcript (Rough Edits)                  85
                                   December 2, 2010
We appreciate all of you who have had to sit patiently and quietly today. We will have all
of that information tomorrow and be spending a day together to take all of that
information, synthesize it, and begin to prioritize that for the Administration on
Developmental Disabilities strategic plan. We are doing that five times over in five
different regions.

And then from all of that information that's being prioritized, pulling together a group of
national stakeholders in Washington, DC in late January to take all of that and further
prioritize and narrow that down into goals and strategic objectives for the
Administration to consider. We'll put that out publicly for folks to comment on one
more time and move towards having a strategic plan in the spring of 2011. So that is
what we are doing with all of this.

We are also working really hard to push the information back out as we have it, so you
will find transcripts of the CART as well as a copies of the written submissions that have
been provided to us all online, so you can review all of that and share it and use it as you
will. I think that this is an opportune time in particular because this is the period of time
that state developmental disability council's are working on their five-year plans, and I
think this is a lot of great debate and conversation that can help inform those five-year
plans. So that is what we are doing next with the information.

My last comment is, I would also be remiss if I didn't say thank you to a whole bunch of
people. In particular, I'd like to thank the EST staff, which I don't see any of them in the
room at the moment, so if you get a chance on your way out, thank the EST staff. Our
logistics staff who have worked very, very hard to pull the sessions together. They are
the ones who make sure you have name badges and try to stop me from calling Mr. Jan,
Mrs. Jan. Sometimes I am the one with the challenges there. And ensuring that people's
needs are met and our accommodations are taking care of. Thank you to the EST staff as
well as the ADD staff.

I know that for many of you, certainly for our staff, it is a wonderful treat for the ADD
staff to be able to be here and be with all of you. I know that some of you have phone
relationships and electronic emailing relationships and whatnot, but I'd like to thank
Kathy and Trina and Kate and Faith. Syed and Ophelia, if all of you could stand up? [
Applause ] Thank you. The ADD staff worked very hard to make all of this come

One more round of applause from our panel from this afternoon and from this morning.
And our Master of Ceremony logistics and handling every cat and dog that comes
through the door, Kate Fialkowski, who is our Kennedy Fellow and has worked
incredibly hard to make all of these envisioning sessions happen, so thank you, Kate.
[ Applause ]

                   Detroit Listening Session Transcript (Rough Edits)                       86
                                   December 2, 2010
The last thought I just wanted to leave you with is a quote from Senator Harkin. On the
last reauthorizations of the DD act, Senator Harkin had this to say: “I think that 10 years
later it is still relevant and was reflected in many of the comments today. The toughest
barriers faced by people with disabilities are not architectural. They are attitudinal. They
are not in the environment; they are in our hearts and in our minds. When people with
disabilities are integrated throughout our communities, we are given the opportunity to
change our attitudes from ones based on stereotypes, fear, and ignorance. To ones based
on admiration, acceptance, and affection. We all gain from the opportunity to
experience people with developmental disabilities as friends, as neighbors, as
coworkers, and as classmates.” Thank you very much and thank you for spending the
day with us. [ Applause ]

                   Detroit Listening Session Transcript (Rough Edits)                    87
                                   December 2, 2010

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