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									                              Denver Envision the Future Summit
                          Listening Session Transcripts (Rough Edit)
                                      December 6, 2010
The following is a ROUGH CUT of the Denver 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
Panelist Introductions (morning) ....................................................................................... 3
Commissioner’s Opening Remarks..................................................................................... 4
Childhood Testimonies .......................................................................................................8
Adulthood (morning) ........................................................................................................ 16
Adulthood (afternoon) ...................................................................................................... 33
Supports ............................................................................................................................ 45
Commissioner’s Closing Remarks.....................................................................................68

                             Denver Listening Session Transcript (Rough Edits)
                                            December 6, 2010

Moderator Kate Fialkowski
Good morning, ladies and gentlemen. If you could take your seat, please. Good morning.
My name is Kate Fialkowski and I'm ADD's Envisioning the Future summit coordinator.
I am also your moderator for the day. The first thing that I would like to do, I had a little
preparation with the speakers, but I would like to go over a few of those comments for
everyone in the room. So everyone knows how the order of the day will work.

We will call two speakers' names, the first speaker that we call will be the person who
will come up to the stage. You have the opportunity to stand at the podium or to sit at
the table. You will have three minutes to testify. For those of you needing more time,
you will have a little bit more time. And just a remark on the timing, there is time
buttons up here. When the button gets to the red, that is when you should stop.

Just a couple of quick comments. This session in Denver is the final session of five
regional meetings. This is a pretty big day for us. Because you guys are our grand finale.
We have very high expectations. I don't know if any of you have been to the theater, but
the closing night is generally a very big night. We expect a lot of applause and things in
terms of viewer participation. We expect to have a very high energy level during the
whole course of the day. Thank you very much.

And we also want to thank all of the people who not only have come to this event but
who have helped arrange for other individuals to join us. And for those individuals who
have participated by submitting testimonies online as well. This has been a pretty big
deal for us, to be traveling around the country and to have our last session here in
Denver. So, thank you [ Applause ]

Yea Denver! That's a good sign of the things to come today. A few housekeeping notes,
please turn off your cell phones. There is always somebody who forgets and generally it
is one of the speakers who is reminded when they're sitting up here. Please turn off your
cell phones.

We are going to take a break in the morning and a break in the afternoon. The restrooms
are out past the registration desk and to the left. On the next level up, there are some
additional restrooms, in case there is a line. There are more places to go. If you have any
questions today, please do not hesitate to ask the staff. Members of ADD have a white
flag at the bottom of their name tags. Our vendor, EST, has purple flags. I would also
like to point out that our panel has red flags. Would someone on our panel be a Vanna

                   Denver Listening Session Transcript (Rough Edits)                       2
                                  December 6, 2010
Panelist Introductions (morning)

Okay. We have a panel this morning and a panel this afternoon. Our panels are working
panels. So that means if you see a panelist at a break or at lunchtime, for those of you
who are not speaking, take the opportunity to speak with a panel member during the
breaks. That is what they're here for. To be listening to you.

Today's agenda is broken into four topic areas. Childhood, adulthood, aging and
supports. We will have two adulthood topics, one in the morning and one in the
afternoon. The day will end with closing remarks from the Commissioner.

What I would like to do first is to begin the session by allowing the panel to introduce
themselves. I am going to turn the floor over to the panel. If you could please say your
name and a small introduction.

Panelist: Mr. John Britton
Thank you. My name is John Britton from Self Advocates Becoming Empowered.

Panelist: Ms. Sharon Jacksi
I am Sharon Jacksi, director for the Division for Developmental Disabilities in Colorado.

Panelist: Ms. Valerie Bradley
I am Val Bradley and I am the president of the Human Services Research Institute.

Panelist: Mr. Joe Meadours
Good morning. My name is Joe Meadours, the executive director of People First of a

Panelist: Mr. Michael Smull
I am Michael Smull and I am with Support Development Associates and chair of the
Learning Community for Person Centered Practices.

                   Denver Listening Session Transcript (Rough Edits)                       3
                                  December 6, 2010
Commissioner’s Opening Remarks

Moderator: Kate Fialkowski
Thank you. How about a round of applause for our panelist for being here with us
today? [ Applause ] Additionally, we have our host for the day, the Commissioner on the
Administration on Developmental Disabilities, Sharon Lewis. Sharon Lewis was
appointed Commissioner of the Administration on Developmental Disabilities by
President Obama in March 2010. That wasn't so very long ago. She had worked in
disability policy for more than 10 years at local, state and national levels.

She originally came to Washington D.C. to serve as a Joseph P. Kennedy, Jr. Foundation
Public Policy Fellow working for Senator Chris Dodd's Health Committee. In 2007, she
joined Chairman George Miller's Education and Labor Committee staff as Senior
Disability Policy Adviser, where she advised members of the committee on disability
concerns related to education, employment and healthcare.

Serving as key staff on legislation including the Americans with Disability Amendment
of 2008, the Higher Education Opportunity Act, the Keeping All Students Safe Act to
Regulate Restraint and Seclusion in the Schools and the Affordable Care Act. Sharon is
the recipient of numerous awards, including the 2010 Distinguished Leadership and
National Disability Policy Award and the Consortium for Citizens with Disabilities
Chairman's Award.

In Oregon, Sharon worked on public policy for the Oregon Developmental Disabilities
Coalition and for the Arc. She is a parent to three daughters, including one with a
disability. She is a native of Michigan and a graduate of Washington University in St.
Louis. Commissioner Lewis, you have the floor.        [ Applause ]

Speaker: Commissioner Sharon Lewis
Good morning. It is wonderful to see a room full of all of you here in Denver at our last
of five of these listening and prioritizing sessions. I'm really excited to have this
opportunity with all of you. To hear about your priorities, your ideas, your hopes, your
dreams and your fears, and to think about how we can ensure that people with
intellectual and developmental disabilities have the rights and the privileges afforded to
them by both the Developmental Disability Assistance and Bill of Rights Act and the
Americans with Disabilities Act.

We have over 30 people planning on speaking today. Each person has a perspective that
we need to hear. Over the course of this process, we have heard directly from over 600
people from 44 states and territories. This has been a very comprehensive process and
engagement and we have heard all kinds of interesting ideas. We have heard from the
families who simply want to see their young children access the quality and inclusive
education with their peers. Yet have little support from the schools. We have heard
from self advocates who live and breathe the values of self determination and
independence but see service systems that don't support these values. We have heard

                   Denver Listening Session Transcript (Rough Edits)                     4
                                  December 6, 2010
from parents of people with severe disabilities who struggle to see how their sons and
daughters can live safely in community homes.

We have heard from youth with disabilities who expect far more than a certificate of
attendance after 21-years of school. More than life in a group home, living among people
that they have not chosen. And more than days, shredding paper in sheltered
workshops. We have heard from families who are frustrated by the seemingly endless
residential services waitlists in certain states, due to state priorities and budget issues.
At the same time, we have heard, hopefully, from grateful families who have seen their
states pursue access to home and community-based services, such that the majority of
low-income individuals with developmental disabilities are accessing the supports that
they need.

We have heard from adults with significant disabilities who have moved out of
institutions and into their own homes. Who have established micro-enterprises and are
directing their own supports and what a difference it has made in the quality of their
lives. We have heard from young adults with intellectual and developmental disabilities
who are currently working in competitive integrated employment situations that not
only give them the power that comes from earning ones own money, but also the joy, the
pride and the friendships that come from meaningful work in welcoming organizations.

One striking exchange during the process involved a parent who spoke passionately with
a heart full of love and good intentions about all the fear and anxiety that parents
experience as it relates to community living. The parent talked about the need to
protect, to keep safe, to care for, but spoke very little about the hopes or the dreams or
the desires of their daughter. When I spoke to the young woman in question, later,
without her parents present, she talked to me about wanting to live in a place with
friends, near, but certainly not with her parents and 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 towards her dreams.

By way of contrast, another young man with significant multiple, physical and
intellectual disabilities talked about his life. Working at a job that he loves involving race
cars, building his own business and living in his own home. His mom also spoke about
her fears and her 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 the support system that will endure.
All of these stories have something to teach us. All of your ideas and solutions are
welcomed. We are all here to listen, to understand and to learn.

To each of you who have come as presenters, thank you, thank you for your
commitment, thank you for your willingness to share your stories, your ideas from your
head, and your emotions from your heart. It takes a lot of courage to stand up here and
go on the record. We appreciate your leadership and your conviction. To each of you
who have come to listen, thank you as well. We are glad you are here and we hope that
you will communicate your thoughts to us in conversations today, during the breaks or
perhaps through written comments on the website.

                   Denver Listening Session Transcript (Rough Edits)                        5
                                  December 6, 2010
To our stakeholders who are listening today in order to help us prioritize during our
long session tomorrow, in order to come up with actions, thank you very much for
committing two days of your valuable time to help us build our strategic plan.

At the celebration of the 20th Anniversary of the Americans with Disabilities Act 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 and the pursuit of happiness. To move America
forward. That is what we did with the ADA." That is 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 DD Act in 2000, the sponsor of the
legislation, Senator Jim Jeffords, charged the Administration on Developmental
Disabilities with the responsibility to pursue and join with other executive branch
entities and activities that will improve choices, opportunities and services for
individuals with developmental disabilities. Senator Jeffords also remarked upon how
much individuals with developmental disabilities can accomplish when they have access
to the same choices and opportunities available to others.

That it is our role to help 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 our federal partners who provide the resources as well as the
monitoring and oversight for many of the services and supports that families and
individuals with disabilities receive in their local communities.

Our colleagues at the Centers for Medicare and Medicaid Services, the Center for
Disease Control, the Social Security Administration, the HHS Office on Disability, the
Administration on Aging, the Department of Education and the Department of Justice
have all been invited to participate with us in this process. 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 what 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 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 people with the most
significant intellectual and communication challenges who may not always be visible
and may not always be heard.

The DD Act lays out our mission and our purpose very clearly. We are, and I quote
again, "to assure that individuals with developmental disabilities and their families,

                   Denver Listening Session Transcript (Rough Edits)                     6
                                  December 6, 2010
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

The expectations established in the two federal civil rights laws, the ADA and DD Act,
provide a tremendous foundation for us to build upon. While the ADA has protected the
civil rights of Americans with disabilities for just over 20 years now, for nearly 50 years,
the legacy of the DD Act has acknowledged our country's 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 any one in this room here
today would disagree with that statement. But how we deliver those supports, what we
focus upon, what we prioritize continues to evolve and change over time.

Not so very long ago, we thought that the delivery of services through congregate
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.
Quality of life and quality of relationships were often secondary considerations. We
certainly did not think about education, let alone, employment and economic self
sufficiency. Our expectations, just a few short decades ago, as a society, were
embarrassingly low.

Thankfully, we have moved beyond most of this thinking. However, the old ways still
linger in some places. We still have people living in institutions and 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 have.

To live where and how they choose, in a home with people we care about, to have access
to education and lifelong learning, to have the chance to do work that we like, to earn,
control and maintain our 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 people with intellectual and developmental disabilities can exercise
choice, control and self-determination. Including people with very significant
disabilities. With the right supports, they can achieve many things, including completion
of elementary and secondary school, going on to college, working, 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.

                   Denver Listening Session Transcript (Rough Edits)                       7
                                  December 6, 2010
To expect anything less is simply disrespectful and would be a great loss to all of us and
to our country. How we get there and how we prioritize to achieve this vision is the
question that I hope you will help us consider today. I look forward to hearing your
answers. Thank you. [ Applause ]

Childhood Testimonies

Moderator Kate Fialkowski
With that, we are going to begin our testimonies. We are going to start the day with the
topic of childhood. ADD proposed the following question in the childhood area. How do
we ensure that each child with a developmental disability will live a healthy and happy
life in a loving family home? Fully participate in all of the experiences of childhood in
inclusive, communities? Be empowered to advocate for themselves and successfully
graduate from school, prepared for college or a career of their choosing? Commissioner,
will you call the first two speakers, please?

Speaker: Commissioner Lewis
Mrs. Muelleman? Can you hear me? Could Mrs. Diane Muelleman, please come
forward and could we please have Mrs. Teresa Bocanegra on deck.

Speaker: Mrs. Diane Melleman

Speaker: Commissioner Lewis
Thank you.

Speaker: Mrs. Diane Muelleman
Good morning. Can you hear me okay? My name is Diane Muelleman, I am from
Omaha, Nebraska. I have a personal experience living with a hearing loss as I have a
bilateral senso-neural moderate to severe hearing loss. I also have experience parenting
children with hearing loss, because three out of my four children also have a hearing
loss. In addition to this experience, I recently graduated with a Masters Degree in
Special Education with an emphasis on helping those who have a hearing loss.

I come to you today both as a person with a hearing disability and I have worked for a
year with children who have a hearing loss. Now, I am advocating more, rather than
educating the classroom. No brags, just facts. I have a 25-year-old daughter with a
severe hearing loss who is a NICU nurse. I have a son who has severe hearing loss and
he is about to graduate from college. And my third one with hearing loss is about to
graduate from high school with honors.

I am very proud of them. I think most of you probably know someone with some form of
a hearing loss, because there are 37 million people in just America alone with a hearing
loss. That impacts their lives and the lives of those around them. It is critically
important that we identify children when they're born, as soon as possible, that they
have a hearing loss, to keep the neurological pathways from their ears to their brains,
strong. After all, it is the brain we use to hear with.

                   Denver Listening Session Transcript (Rough Edits)                         8
                                  December 6, 2010
Without consistent access to sound, with hearing aids, the neurological pathways to the
brain do not get used and when they're not used, they grow weak and can disappear.
Consequently, someone with a hearing loss, but does not use hearing aids will often
begin to use part of the brain that exercises visual development rather than the part that
develops listening skills. Hence, I am using a FM system today, because I want to hear.

I am not deaf. I can hear. I do not want to use visual clues with a CART. I appreciate it
when there is nothing else available, but if I continue to look at that, I am not using my
listening skills and I cannot maintain a good communication in the hearing world. I
need to practice my listening skills, we need FM systems available and we need those
hearing aids available to those who have a hearing loss. And thank you very much. They
had to go and get this from Arizona for me today.

Studies show that there is a critical period from birth to age 3 for learning language. If
we want our children to participate in the language world, we need to make sure, in
those three years, they need to be identified and have appropriate hearing aids for them.
We also need to have more auditory oral educators. That is listening and language
teachers. That is all I have left?

Anyways, these educators specifically teach children how to listen, how to express
themselves, how to receive language that they cannot pick up like normal hearing
children. I have seen the difference that makes in children's lives. It is incredible. In
order to keep listening, it is not only those born with a hearing loss but we have an
incredible amount of teenagers today, who have damaged their hearing from playing
their music at dangerously loud levels. We have got the people coming back from
military service, they need hearing aids. They want to stay a part of the hearing

We need to make sure that they have access to hearing aids. The problem with hearing
aids is that it also amplifies other sounds in the background. That makes some
situations difficult to hear the speaker. Today's technology allows for induction loop. I'm
proud to say that Colorado has two of them, but we need more public induction loops, so
that the hearing aids that have a T-coil can pick up the sound for people. So we can
participate in the public arena with those of you who have regular hearing.

I have to shorten this. I'm just saying that if we have the auditory and oral educators and
hearing aids and then loops in public situations, those of us with a hearing loss, can
participate more fully in the experiences and have a better lifestyle. I guess I better
shorten that up.

 The last thing I wanted to make sure I said was that we need hearing aids to be
affordable to everyone. Just like glasses are for people who need them. Those who
dispense hearing aids, to inform people about the T-coils in case we get more loops in
America, people can use the T-coils. Thank you for taking time to listen to my thoughts.
I will answer any questions you have.

                   Denver Listening Session Transcript (Rough Edits)                        9
                                  December 6, 2010
Speaker: Commissioner Lewis
Thank you very much. [ Applause ] Panelists, do we have a question? Please use the

Speaker: Panelist
Diane, you were speaking about several things that are needed. One of them was
assessment at birth?

Speaker: Mrs. Diane Muelleman

Speaker: Panelist
To what degree is that present and to what degree is that a deficit now?

Speaker: Mrs. Diane Muelleman
There are, I should know my numbers, there are a number of states now who do have
now, newborn hearing screening. But it goes beyond that, because we're finding even
after a newborn is screened with a hearing loss, those technicians who are screening
them do not understand how critical it is that the parents follow-up and there are many
children getting lost even after the newborn hearing screening. So we need to do more to
make sure that those children stay in the process and continue to get services. I think
you are raising a very important point.

Speaker: Panelist
I think it would be very helpful for ADD if you could discover if there is any information
about how much of this is true?

Speaker: Mrs. Diane Muelleman
I can get you numbers, yes.

Speaker: Commissioner Lewis
Thank you.

Speaker: Mrs. Diane Muelleman
Thank you very much. -- Thank you very much. Do I e-mail them?

Speaker: Commissioner Lewis
Yes, check in with the people at the registration desk. Thank you. If we could please
have Mrs. Teresa Bocanegra and we have Ms. Sue Olsen on deck.

Speaker: Mrs. Teresa Bocanegra
Okay, thanks. Good morning, I am Teresa Bocanegra. I have been an educator for 26
years. I have served as an elementary school principal, special ed director, and teacher. I
am nationally certified in the area of exceptional child birth to young adulthood. I serve
as the President of the board of the Arc in Laramie County in Cheyenne, Wyoming. I am
a little nervous. I am here today to talk about mandated testing, state testing for kids
with intellectual and developmental disabilities. As an educator, I obtain these tests the

                   Denver Listening Session Transcript (Rough Edits)                     10
                                  December 6, 2010
third week of February. I can begin testing the first week of February, I'm sorry, the
third week of January.

I began testing the first week of February and I am finished the third week of April. It
takes about 3-1/2 months to prepare and get this test to students. The test is comprised
of a portfolio of student work as well as individual student performance events. Which is
typically the bubble type of test that most kids take.

For the kids that I work with, right now, I am working with a more severely involved
students and because of the augmentative communication devices as well as other
assistive technologies that they need in order to not only communicate but to obtain
information from them, it takes, on average, anywhere from 9 to 16 days per child to test
just for the performance or for the portfolio of student events and then another day, day
and a half to do the student performance events, the bubble in part of that.

That is a lot of time, working on testing, 3 to 3 1/2 months out of the year. While I agree
that the individuals with intellectual and developmental disabilities should have access
to the general curricula content, most require content beyond the typically developing
peers. Relevant content, which enables them to fully participate in all of the experiences
of childhood and successful transition into the community cannot be taught and
mastered, when the primary academic time spent giving the test and preparing for it,
consumes three months out of the year.

While I am doing this test, my para -professionals who are not certified educators are
providing instruction to the remaining students that I have in my classroom. Which is
not fair to them, as well. IEP goals, functional skills, transition skills, community
integration and basic skill acquisition, are left to happenstance, while testing is being
performed. Through critical learning opportunities, are to be optimized and not
minimized and by the precedent of state testing.

If mandatory testing must occur, let's keep the integrity of the individualized
educational plan. Asses the acquisition of skills of the child's needs to successfully
integrate into the next level of living. And if it is post secondary school, then let's provide
that. The assessment should test the child's proficiency level in order to successfully
meet that goal. If it is independent living, the assessment should assess the proficiency
level of the child to successfully meet that goal. And if it is assisted living, then we need
to find out if the child has obtained the skills necessary to be successful in that setting. If
we must test, let's assess what is meaningful and relevant to the child. In so doing, we
can use the data from the assessment to drive the educational and functional skills, the
IEP and transition goals for the upcoming year.

The role of the Administration on Developmental Disabilities would be to effect change
from the national level to make the state testing more relevant to the individual. In the
meantime, suspend the expectation of assessing all individuals with intellectual and
developmental disabilities, according to the national standards and benchmarks
identified for the general education population.

                    Denver Listening Session Transcript (Rough Edits)                       11
                                   December 6, 2010
As a president of the Board of Laramie County as well as serving in this position that I
serve in, I'm kind of going outside the box, and I work with the Division of
Developmental Disabilities, the Governor's Council on Disabilities, Social Security
Administration and the Adult Providers in Cheyenne, Wyoming. Together, we're
networking together and providing information to parents and individuals in the
educational setting on what is out there after they graduate from high school. I'm
finding that most of my parents and students do not know. So, I need to be building
those bridges beyond just the assessment. Thank you. [ Applause ]

Speaker: Panelist
Yes, you are from Wyoming? Right? Do you include self advocates in the process? I'm
not sure if you know what People First is, but People First is an organization that is run
by and for people with developmental disabilities. Do you try to find an organization like
that to give some of your students confidence? Build their confidence up, so they will
know there is something after high school? Look at me, I am a role model. Let them look
at a role model, to be successful. And give parents hope, that their son or daughter could
achieve that dream or goal one-day?

Speaker: Mrs. Teresa Bocanegra
Thank you for the question. Again, because I serve on the Arc of Laramie County as well,
that is what we are trying to do. There is life beyond school. You are a perfect example as
a self advocate. So what I'm trying to do four times a year, I pull in those agencies, the
adult provider agencies.

We have two adults that live in our community that present in our seminars. They talk
about what life is like for them and we videotape them and show them, this is what life
can be. Because many of our kids at the school level do not know what they can do
afterwards. So we are bringing the adults that are already living successfully out there in
our community, bringing them in, to show the school age children what life can be like.
Hoping that they can be self advocates as well.

Speaker: Panelist
Thanks. [ Applause ]

Speaker: Commissioner Lewis
Thank you very much. We have Ms. Sue Olsen and we have Ms. Betty Lehman on deck.

Speaker: Ms. Sue Olsen
Good morning. I am Sue Olsen from the Center for Persons with Disabilities at Utah
State University and I want to visit with you a little bit about inclusion. The concept of
inclusion for children and teenagers is generally thought of in relationship to classrooms
and childcare. Inclusion should and needs to extend to the full array of childhood and
youth activities.

The inclusion of children with disabilities in their communities should not be an ideal,
but a matter of everyday life. Inclusion is a concept that is often embraced conceptually,
but functional implementation is difficult. This being said, care must be taken, not to

                   Denver Listening Session Transcript (Rough Edits)                       12
                                  December 6, 2010
support add-on inclusive programs, where children with disabilities are included, but do
not fully participate.

The complexity inclusion is to ensure that all individual participants with and without
disabilities value the experience and benefit from the joint involvement. Additionally,
inclusive opportunities to sport and leisure events is not a social opportunity but an
opportunity to develop a healthy lifestyle.

According to the Healthy Children 2010 Report, children with disabilities are the least
active sub-group of children, and are at an additional risk for a variety of health
conditions associated with a sedentary lifestyle. Inclusive recreation suggests the
elimination of barriers to experience full participation and increase healthy benefits.
Barriers and restrictions to providing inclusive community recreation include such
things as financial cost, staff training, use of adaptive equipment and inclusive program
development. Focus on involvement of children and youth with disabilities in sport and
leisure activities is at an all time high.

Research is becoming available which looks not only looks at participation but the
enjoyment of participation. A greater emphasis is needed to address the barriers and
support further growth of inclusive activities.

The following are some thoughts for overcoming the challenges for providing inclusive
recreation services.
   • Build local commitment to inclusive recreation by emphasizing its benefits for all
       community members.
   • Support state and local departments that provide recreation programs in the
       creation of organizational goals that address inclusion.
   • Create a broader awareness and adoption of a people first approach.
   • Increase the understanding and benefits of seeking guidance for persons with
       disabilities who live in the community by having them involved on advisory
       boards, planning committees and focus groups.
   • Develop and provide training and strategies for inclusion, including use of
       adaptive equipment, supporting positive attitudes and increasing customer
       service skills.
   • Ensure physical access to all facilities, buildings, parks and trails. Design
       programs that offer a wide range of activities and challenging skill levels.
   • Develop targeted marketing towards families, disability advocacy groups and

These are just a few of my ideas that address the challenges towards inclusive
recreation. I thank you for your time. [ Applause ]

Speaker: Commissioner Lewis
Thanks, Sue. Just a quick question. You really laid out a very comprehensive agenda.
Very impressive. I am just wondering what the role of peer mentors might be in
encouraging young people to participate in inclusive recreational activities?

                   Denver Listening Session Transcript (Rough Edits)                      13
                                  December 6, 2010
Speaker: Ms. Sue Olsen
We have a recreation program that actually, it's a skill development camp, and we use
peer mentors to help teach the basic skills of the sport. Parents expressed to us that it
was hard to involve their children in an inclusive sport activity when they didn't
understand the rules. So we have skill development camps where they learn the rules
from peers that then, they kind of have that individual coach. As they gain the skills,
they can back away. And we have children who then kind of graduate from the skill
camps to participating in their community activities. [ Applause ]

Speaker: Commissioner Lewis
Thanks. We have Ms. Betty Lehman and Ms. Bernadette Flynn on deck.

Speaker: Ms. Betty Lehman
Hello, I am Betty Lehman and I am the executive director of the Autism Society of
Colorado. I am here today as a staff professional and also as a parent. I have a son with
autism, he is 22 years old. My topic today is childhood.

The overview of the problem, I am addressing the problem that arises from pediatricians
not screening for autism at 18 months and 24 months as recommended by the American
Academy of Pediatrics. This is a local, state and national concern. The current cost of
autism to the U.S. Economy is $60 billion. Every child diagnosed cost an average of $3.2
million across their lifespan. The Academy of Pediatrics mandated that every
pediatrician in America screen all 4 million babies born annually for autism at 18
months and 24 months.

We know that effective, intensive early intervention cuts the cost of lifetime care by two-
thirds. We know that the best window of opportunity for effectiveness of early
intervention is prior to age 3. Unfortunately, only 13% of pediatricians nationally are
screening for autism. And the average age of diagnosis is five.

Pediatricians provide three reasons for not screening for autism. Number one, since
pediatricians are additionally recommended to provide a developmental screen at 18
months, they will not get paid for both a developmental screen and an autism screen at
the same visit. Number two, it is a hopeless diagnosis and no amount of treatment will
improve outcomes. And number three; there is no funding for treatment. Here are my
proposed solutions.

Pediatricians should choose an autism screen versus a developmental screen at 18
months if they actually only get paid for one screen. This might not be true in most
states because reimbursement has changed. Number two; educate physicians of the
outcomes of early intervention.

Nearly 50% of these children will enter first grade with a normal curriculum which saves
special education dollars. This is critically important in Colorado because we are 51st in
the nation in funding for special education. We have an unfunded mandate and I have
included Washington DC in that statistic.

                   Denver Listening Session Transcript (Rough Edits)                        14
                                  December 6, 2010
The next important item is that 90% of these children will develop speech as a primary
form of communication. Autism is a disorder that effects the brain's normal
development of communication and social skills and with effective intensive early
intervention, prior to age 3, 90% will develop speech as a primary form of
communication. Early intervention can raise IQs and listening and understanding called
receptive language skills as much as 18 points; which can take a child out of intellectual
disability and into normal IQs for purposes of learning in school.

And of all the developmental disorders, autism lends itself most to treatment. The next
is to educate the general public about the red flags of autism and the necessity of
screening to create that demand. Many parents only understand that autism is a
stigmatizing diagnosis and they don't understand how much it lends itself to treatment
and actually how exciting it can be to have a label that does lend itself to treatment and
how important it is to get your child into treatment.

Finally, to educate pediatricians and the general public about the new insurance laws
that provide funding for treatment. So, there are 24 states now that do have this funding
for treatment. The argument that there is not funding for this treatment is just simply
not true. That is particularly true in Colorado, because there is no cost to families if they
get their child into early intervention prior to age 3.

What is the role of the ADD in this solution? The ADD can focus on marketing and
disseminating the facts about autism and early intervention. I just wanted to add one
other thing. It is a travesty that there is not a billing code for ABA, the treatment for
autism in Medicaid state plans. Now, we have private insurance that is paying for
treatment of autism and Medicaid would typically, if your Medicaid eligible, pick up co-
pays and it would really create a tremendous amount of funding relief, but our Medicaid
state plan, I don't believe there is any, except maybe in Ohio, in the country, that calls
applied behavioral analysis, a standard treatment for autism. They all say it is
experimental, which is just simply not true. Thank you for your time.

Speaker: Commissioner Lewis
Thank you. [ Applause ] Panelists, do we have a question? Great. I think John has a
question. John?

Speaker: Panelist
[ Indiscernible -- low volume ]

Speaker: Commissioner Lewis
Okay, John's question is, as a parent, do you push self advocacy to children? Would that
be something that could be considered for all children with autism? Is to say, can we
include children in the early intervention process?

Speaker: Ms. Betty Lehman
Thank you for that question, John. As I said, I have a son, Eli, who is 22-years-old. My
son has a measurable IQ that is very, very low. But his self-esteem and his ability to

                   Denver Listening Session Transcript (Rough Edits)                       15
                                  December 6, 2010
work are very, very high. What I can tell you is, it is absolutely amazing what a person
can do if the expectations are very high and the supports are there. That is what has
happened in my own son's case. He has three volunteer work opportunities that he goes
to. He is out in the community every single day. And he just thinks he is just the best at
everything he does. And he has an infectious personality that people just admire him,
because he has just a good attitude. And I think that children can be included and
should be encouraged. Thank you.

Speaker: Commissioner Lewis
Thank you very much. Okay, can we have Ms. Bernadette Flynn.[ Applause ] Bernadette
Flynn? The last of our childhood speakers have not joined us today. So we are going to
take a 10-minute break. And reconvene at 10:40. We would ask that you keep it to that
10 minutes. Thank you very much. [ Applause ]

[ Participants on break and reconvene at 10:40 ]

Moderator: Kate Fialkowski
This is your five-minute warning, five-minute warning. This is your two-minute
warning. If you could take your seats, please? Thank you, we are going to begin. One of
the reasons that we take that first break is we can respect the fact that many you have
been sitting around drinking coffee for two hours. So we try to do that break as soon as
we can.

There are a couple of other reasons that we take that break. First, we have made some
adjustments to the lighting, so I hope now, and the people in the back of the room can
actually see the panel. That should help a little bit. One other note, it also helps us
understand how you guys operate from breaks and what we learned is you are tardy
coming back. So, when we give the two-minute warning, that should be that your little
bums are approaching the chair. Just to let you know. That's what that means.

I mention that because for the next sections, as we go through adulthood, the timing
gets a little tighter. We just want to give you some warning about that. That we will be
holding a little tighter to the schedule as we progress through the day. Thank you. Thank
you all. Let's give a around of applause for the speakers from this morning. [ Applause ]

Adulthood (morning)

Moderator: Kate Fialkowski
And we are moving on to our next topic. Our next topic is adulthood. ADD proposed the
following question in this area. In the future, what will be the most important
contributing factors to ensuring that adults with developmental disabilities achieve a
quality 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 maybe there are other issues that we have not
listed? Commissioner, would you like to call the first two speakers?

                   Denver Listening Session Transcript (Rough Edits)                      16
                                  December 6, 2010
Speaker: Commissioner Lewis
Welcome back and if we could please have Dr. Joseph Derdzinski and I apologize if I
am, was that pretty close? Good. We have Ms. Marijo Rymer on deck.

Speaker: Dr. Joseph Derdzinski
Good morning. I would like personally, to thank Commissioner Lewis and other
members of the listening panel for taking the time to travel throughout the country to
listen to the needs of and concerns of parents like my wife and me. Kathy and I are here
today to discuss concerns related to our son Christopher.

Christopher is 13 years old and he has profound cognitive and physical disabilities. As
you can imagine, planning for his adult years presents real challenges and no small
amount of anxiety for Kathy and me. Because his adulthood is just a few years away, we
are exploring new opportunities, places and relationships to ensure that we all are able
to achieve a modicum of independent living, economic self sufficiency and full
participation in our community.

As a parent, it is important that in many decisions that we make about her son's future,
we work in partnership with others to shape policy decisions. There are three things to
consider in those discussions, including how we reshape the existing systems that serve
those with disabilities and their families who love and support them.

First, we must look at the high cost of institutional care. Today, in Colorado, the annual
cost to serve a person in the state operated facility is $176,198. The average cost to serve
someone in the community is $43,175. Most states spend far more federal dollars for
long-term care on expensive institutional services like nursing homes than they do on
home and community-based services, also known as HCBS.

Independent living for our son is not institutional care. To create independent living,
economic self sufficiency and full participation opportunities, we must be cognizant of
policies relating to choice in everyday decisions. The Medicaid program, as it stands
today, continues to allocate a disproportionate share of its resources for institutional

Second, we must partner in policy strategies to rebalance our system of care. To
prioritize means we, all parents and other stakeholders, must work together to support
the shift for more resources toward HCBS to rebalance Medicaid long-term services and
support spending between institutional services and HCBS. If there was a shift in
expenditures to innovative community supports, for example, programs that seek to
tailor families' ideas on caring for their family members based on their individual
circumstances and needs.

Finally, we must consider the challenge inherent in the growing waiting lists. In
Colorado today, there are 1,390 people on a waiting list to receive residential services.
The services would need to grow by 30% this year to meet that need. Over time, the
problem of offering the basics of services and supports grows, as current estimates for

                   Denver Listening Session Transcript (Rough Edits)                        17
                                  December 6, 2010
adults age 60 and over with intellectual disabilities and other disabilities range between
600,000 and 1.6 million. This population, as we know, is growing rapidly.

Although many persons are identified and the true number is not known, we can expect
that by 2030, there will be several million. Again, providing a menu of tailored options
would go far in addressing this concern.

It is my hope I will affect policy to support greater funding for innovative program
change. Our goal for Christopher is full participation as a valued member of an inclusive
and integrated community with choices for him as he grows into adulthood. Thank you
for your time. [ Applause ]

Speaker: Panelist
How are you including the self advocate in the planning process and decision making?

Speaker: Dr. Joseph Derdzinski
I'm sorry, could you please repeat the question?

Speaker: Panelist
How are you including the self advocate in the planning process and decision making?

Speaker: Dr. Joseph Derdzinski
Are you referring specifically to our son?

Speaker: Panelist

Speaker: Dr. Joseph Derdzinski
Christopher is unable to communicate directly with us his particular needs, in other
words, verbally, orally or in other forms, so Kathy and I have to make the great majority
of decisions on his behalf. Having said that, we certainly understand after caring for him
for 13 years, his emotional and physical needs. So, every decision that we make is going
to be cognizant of that. We do include Christopher in all of the decisions that we make
and use our best judgment and engaging how that will impact him.

Speaker: Panelist
Yes. If you look around the country at the family movement and at the Arc movement,
that leadership is aging. Just like leadership in a lot of our field, speaking personally. I
am wondering what your ideas are about mobilizing younger families like yourself who
have somewhat different perspectives, different aims for their family members? How
you think that voice can become more powerful, nationally, at the state level, local level?

Speaker: Dr. Joseph Derdzinski
That is a very good question. Obviously, it is difficult to say with such a diverse group
exactly what those particular needs are, but there are certain directions and certain
initiatives that we would like to head. I think as I've noted very briefly in my talk, that is
in the direction of having choices tailored to our particular circumstances.

                    Denver Listening Session Transcript (Rough Edits)                       18
                                   December 6, 2010
Now to answer your question directly, my wife Kathy and I are involved in a couple of
organizations, including state and federal initiatives, one in particular called Mosaic
Allied Voices, where we are mobilizing family members, not just parents, but also other
people who have grown up with particularly siblings of people with disabilities. So that
we can bring down the median age of those advocates So that we continue some of the
gains that have been made over previous generations into our next generation. I know
that I, Kathy and I and others, take this role very seriously.

But I will recognize that it is very much in the early stages. There are many, many people
looking for direction for organizations to be able to gel around. So that we can present
an allied voice.

Speaker: Commissioner Lewis
Great. Thank you. Thank you very much. [ Applause ] We have Ms. Marijo Rymer and
we have Dr. Denver Fox on deck.

Speaker: Ms. Marijo Rymer
My name is Marijo Rymer. I am the executive director of the ARC of Colorado. I also
serve on the Board of Directors of the National Council of Executives of the Arc. In
2008, I was privileged to be the chairperson of a ballot initiative in Colorado, seeking to
raise the state sales tax by two-tenths of 1% to eliminate waiting lists for services for
people with developmental disabilities.

About three weeks before the election, the world's economy began to tank and the
initiative failed. However, while we were not successful at the ballot, we were successful
in other ways. With a campaign budget of less than $700,000, we convinced almost
1,000,000 voters in Colorado to vote yes for a tax increase. In a fiscally conservative
state such as ours, that is a remarkable feat.

Additionally, half of the newspapers in the state actually endorsed the tax increase and
the other half all agree that providing services for people with developmental disabilities
is a fundamental obligation of government.

I would like to urge the ADD network to take on the issue of entitlement for services for
people with developmental disabilities as a major cause and approach it the same way
that we have approached many other civil rights issues in our country over the years.
Winning the battle to integrate public schools and the battle to ensure equal pay for
women, which is not quite won, and to ensure that children with different learning
needs can sit in the same classroom as typical children.

As well as the ADA, took a variety of efforts that ranged from litigation in many cases to
public awareness to build a movement of concerned citizens who understand the issues.
As well as mandating that recording and data be kept in uniform and consistent ways by
the federal government. Providing incentives for states to make available for every
person who qualifies—services that people are entitled to. I truly believe that if the
network of all the State DD Councils, the Protection and Advocacy agencies, as well as

                   Denver Listening Session Transcript (Rough Edits)                     19
                                  December 6, 2010
the UCEDDs were to come together and work within each state for a multi-layered,
multi-faceted, multi-year effort, we could get to the day where people can actually
exercise the rights they have.

It is one thing to have the right not to live in an institution, but if the services and
supports are not available in the community, that right is rather hollow. I truly urge the
network to work in a very concerted effort and focused effort with all of the
organizations and individuals who believe that this right should be exercised to make it
a reality. I can assure you that the Arc will be here to help. Thank you. [ Applause ]

Speaker: Panelist
One of the things you mentioned is the three tools, the biggest piece I have seen over the
last couple of years, several years is the self advocates are left in left field. I think it is
time for us to put everything on the side now and come together. I agree but if you don't
have a strong self advocate system, it won't be successful because it will be all the
professionals and the parents saying, how can we voice our concerns?

Speaker: Ms. Marijo Rymer
Thank you, Joe. By the way, I know Joe and I am not just using his first name for no
reason at all. I really agree with you and I can assure you that African Americans and
women and people with disabilities will tell you that they were part of those civil rights
movements to make sure that their rights were protected and exercised. It is not good
enough. In fact, it is not even good at all, for us, people like myself, who does not have a
developmental disability, to be writing the rules or writing the prescription of services
and supports that individuals need, you need to decide what those needs are and we
need to advocate for you. [Applause] I know Sharon too.

Speaker: Commissioner Lewis
You talked about the civil rights for individuals which is critically important, but during
this time of state and federal budget shrinking and the focus, how would you refocus
into a broader way, those kinds of issues?

Speaker: Ms. Marijo Rymer
I think that it is unrealistic to assume that states can provide the services that they
currently provide for individuals, for every person who is eligible under the revenue
constraints that every state has. So we need to re-design what that array of services is
and make it simpler, and I would urge that we demand that the federal government
provide incentives for states to make things more simple and reduce the silos. To ensure
that people get what they need, when they need it at certain points in their life.

In Colorado, we have unintentionally and probably with good intentions, built silos of
services, take residential services for instance, and when a resource becomes available
for a family who may, at some point need 24/7 supervision and support, they take that
resource when it is made available to them, because they're afraid, if they don't take it
then, when they need it down the road, they might not get it. In some cases we are
paying for too much service at some points in some people’s lives and we are not paying
for enough at other points.

                    Denver Listening Session Transcript (Rough Edits)                       20
                                   December 6, 2010
So, I believe that part of the answer is simplifying the array of services so that people get
what they need, when they need it and to ensure that they get what they need, not a
menu that someone else has predetermined for them, that ought to go into that box.

Speaker: Commissioner Lewis
Thank you very much. [Applause] If we could please have Dr. Denver Fox and then we
have Mr. Jason Leszcynski on deck.

Speaker: Dr. Denver Fox
Thank you so much, Commissioner Lewis, for inviting us to present our thoughts and
concerns about these very critical issues.

I am Denver Fox. I am the parent of two children with profound disabilities. Andy was
born with profound developmental disabilities and Tim was paralyzed from the
shoulders down on his 21st birthday. Andy now lives successfully in a host home, and
Tim is a Stanford Law School graduate and he and his wife are noted attorneys having
achieved a record ADA accessibility settlement with Kmart successfully settling with
Burger King, both in the millions of dollars. They continue their accessibility efforts with
other major corporations.

I am also the founder and coordinator of No Wait, the national organization to end the
wait list; and PADCO, Parents of Adults with Disabilities in Colorado. I am struck that
there are meetings, conferences, hearings, articles, and the like about services to
individuals with developmental disabilities and they all consistently ignore at least
370,000 individuals who receive no services because they are on wait lists.

Additionally, they never approach the issue of portability of services between states. No
matter whether it is a request for testimony, even for these hearings, in Arc national
conferences, AAIDD, TASH or similar alphabet organizations, the issuing of services to
these hundreds of thousands of individuals waiting and waiting and waiting for critical
services and held prisoners in their own states is simply swept under the rug.

Yet, there are some folks who are attempting to solve the problem of wait lists and
portability. No Wait has identified 31 states with some sort of wait list campaign
including efforts by Developmental Disability Councils, Protection and Advocacy
organizations, state Arcs, a variety of coalitions and through litigation.
Some are highly organized with major efforts, others just getting started or needing
organizational help. We have recently developed a directory listing these state efforts
and I'm going to leave this with this group.

The one commonality amongst these 31 state efforts is that the states do not
communicate with each other. No state really knows what other states are doing—their
successes and failures; their strategies and tactics. Nor have the states jointly joined in
developing a national strategy. Such as, to reverse priorities and make home and
community-based services the default Medicaid service, and institutional care the
waiver service.

                   Denver Listening Session Transcript (Rough Edits)                       21
                                  December 6, 2010
Likewise, there have not been strategies developed on the critical issue of allowing
individuals with developmental disabilities and their families to move from state to state
and retain critical services.

No Wait’s plea is have the support of the Administration on Developmental Disabilities
for a national conference to develop ideas and plans and methods of communication
among these states. No Wait is ready and willing to take the leadership role in this
opportunity to provide services and portability to over 370,000 individuals waiting and
waiting and waiting and those receiving services who are prisoners in their own states.
Thank you. [Applause]

Speaker: Panelist
Thank you, Dr. Fox. You raise some very challenging issues. One of which, is that when
you say that the home and community-based services should be the default and the
institutional care should be the waiver, that would require a change in federal law.

Speaker: Dr. Denver Fox
That is correct.

Speaker: Panelist
This is a rather challenging time to get federal law changed. What would your strategy
be to get that particular law changed?

Speaker: Dr. Denver Fox
I would need to bring together all those in the United States, or their representatives,
into a general meeting where we can get some grassroots action going, get some traction
on the issue. Right now, each state is pursuing their own agenda, on a state basis and
really has no national focus and I would start there. Let's get together, let's talk about it,
see if we can come up with a national focus. If each of those states could get to each of
their congressmen and representatives and senators, leaders, governors and make some
impressions and get some ideas going, we might make some progress.

Speaker: Panelist
Do you have numbers, you have numbers on the wait list, that are listed here, can you
tell us the source for your data?

Speaker: Dr. Denver Fox
Yes. We queried every single state waitlist effort that we could find. They are really hard
to come by but we did, we found 31 of them and these figures are reported by advocates
or in some cases by governmental agencies in those states and there is a listing of them

Speaker: Commissioner Lewis
Any further questions? Thank you very much. Thank you. [Applause] Mr. Jason
Leszcynski and then we have Mr. Bob Lawhead on deck.

                    Denver Listening Session Transcript (Rough Edits)                      22
                                   December 6, 2010
Speaker: Mr. Jason Leszcynski (Mr. Michael Gamel-McCormick reads his
Good morning Commissioner, I am Michael Gamel-McCormick and it is my honor to be
able to speak for Jason Leszcynski, who is from Denver, Colorado and can't be here
today. To honor his words, I will state them exactly as he has written them.

Thank you to let me write. I am Jason Leszcynski. My birthday is August 7, 1979. I live
with mom and daddy. I have autism and it is hard to talk. I like to read. I get scared all
the time. I want to go to work but the lady was mean and so I can't. Mom said I did a
good job. She cried. I like to go to places with mom. I like to ski and run and tandem
bike ride. I hear mom and daddy talking about money, not enough to pay. I have to only
go to music two a month. Mom makes food and drives me in the car. Daddy is sick. I
have a toothache. Mom takes me to help. I like to write on the computer. Mom goes to
meetings. I don't like meet about me. My mom cried that some money is not enough. I
heard her that the mail says bad news on every day. I do not know more. I worry many
times what I can do if mom is not here with me. Bye. [Applause]

Speaker: Commissioner Lewis
Please have Mr. Bob Lawhead and then on deck, we have Ms. Korri Ward.

Speaker: Mr. Bob Lawhead
Thank you. Hello everyone, thank you so much for the opportunity to testify today. My
name is Bob Lawhead. My wife and I, Anastasia, have a son, 14 years old who
experiences Down syndrome, in Boulder. I also serve as the CEO of an agency in
Boulder and Denver called Community Link. We provide residential and employment
services to people developmental disabilities. I also happen to serve as co-chair of the
public policy committee for the National Association for Persons in Supported

I would like to speak today about the disincentives for employment and the resulting
poverty that exists for people with intellectual and developmental disabilities as it
relates to current federal policy. More specifically, I'd like to speak to the Social Security
Administration policy limiting assets to $2,000 and setting substantial gainful activity
at $1,000.

The asset limit means people with I/DD must remain in poverty. The SGA level means
people must not earn significant wages. Both policies put eligibility for Social Security
benefits and ongoing medical benefits at risk. The Able Act, presently before Congress
would allow for savings accounts above the $2,000 asset limit, similarly, Canada has
recently implemented the registered disabilities savings plan which allows for savings of
$200,000 without putting disability benefits at risk.

The RSDP, as it's known in Canada, also provides matching contributions to the savings
account with a 10 year limit on when those funds can be withdrawn. That has been in
place for a couple of years now, in Canada. Additionally, the Rehab Services
Administration and the Centers for Medicare and Medicaid Services have not provided

                    Denver Listening Session Transcript (Rough Edits)                       23
                                   December 6, 2010
clear guidance to the states on how to work together to expand employment
opportunities for people with intellectual and developmental disabilities.

The variability in how the state vocational rehabilitation and Medicaid waiver programs
work together in this area is truly astonishing. Resulting in differences in the states from
4% of all people served by the state of Arkansas in supported employment, up to 77% of
all people served by that state in supported employment. So you can see a vast range
based on how state policy interprets what funding they can get how that funding works
between the voc-rehab program and Medicaid.

Finally, supported and customized employment programs for people with intellectual
and developmental disabilities make fiscal sense. Just as we heard earlier, the vast
differential between residential service cost, when it's an institution versus community-
based residential services, the same thing is true for regular, integrated community
employment and what we presently have as the default service, either sheltered
workshops or non-work, community-based services that tend to focus on recreation and
other activities.

Robert Samara (of Kent State University) has found that employing people with
ongoing support is much less expensive than current segregated work programs or
community-based non-work programs and more recently, Samara has found that the
financial benefit to people served, so these are people with intellectual and
developmental disabilities served in supported employment and customized
employment is significant in every state and may result in earnings more than 10 times
greater than sheltered, segregated employment in states such as Washington.

In these difficult financial times, we must remove employment disincentives within the
Social Security system that would allow people with intellectual and developmental
disabilities to live outside of poverty, must coordinate our vocational rehabilitation and
Medicaid waiver programs to cooperatively expand employment, the result would be a
more cost-effective, cost-efficient and humane national policy for people with
intellectual and developmental disabilities. Thank you. [Applause]

Speaker: Panelist
Bob, just wondering how you would see networking or to create some movement for
individuals going from a sheltered work setting into community employment. You have
indicated some strategies, but in terms of maybe a grassroots effort or how you might
begin that process, particularly now, during the downturn in the economy and less jobs
being available in general. How would you further assist that process?

Speaker: Mr. Bob Lawhead
The thing that we found, as we closed our sheltered services and 1996 was that people
with disabilities choose community employment if they're given the opportunity to
experience that. The first step is clearly for self advocates to get experience in
community settings so that they are able to experience that firsthand that understand
the difference between the segregated situation that their in presently and the
integrative situation that they can find themselves in.

                   Denver Listening Session Transcript (Rough Edits)                     24
                                  December 6, 2010
We found, just like all of us are, that people are fearful, but once they get experience in
community settings, people associated with our agency, 100% of the time, chose
community over segregation. So, community experience is the first thing, whether those
are internships, like we do in project search, whether it's other unpaid experience or
paid experience in the community, those pieces are exceedingly important for self
advocates to be able to base their choice on actual experience and knowledge. And I
think that is the first step.

Speaker: Commissioner Lewis
Thank you. Any other questions?

Speaker: Panelist
Bob, if you look at the state policies that have made the difference, you referenced
Washington State as being a leader. I think Oklahoma is another leader. Have you
looked at those state policies?

Speaker: Mr. Bob Lawhead

Speaker: Panelist
Do you have any conclusions that you would share?

Speaker: Mr. Bob Lawhead
Certainly. I don't know that you would have enough time to hear it all, but the
Washington Working Age Adult Policy, WAAP, basically expects that people receiving
state funding, state matched funding from that state, will work. And so, the default is
work. It is interesting because in our state here, the default is work as well, based on
rules and regulations right now.

 However, we have not been nearly as successful as Washington and were previously.
Washington State has a very clear policy on expecting that people will work and you
have to get an exception to policy to do something other than that. The consistent piece
in the number one and number two states, Oklahoma and Washington, is rates that is
cooperation between Medicaid and VR and rates in the VR system that are significantly
higher than most states.

The pay-off, however comes in the long-term support, when the people are supported
long-term, we found in a study that we did locally that the state would save $6,500 per
person, per year, if you can get somebody to the ongoing follow along stages of
supportive employment. It is worth slightly higher rates to get to the point where you’re
saving significant dollars in Medicaid services. Does that answer your question,

Speaker: Panelist
It sounds like it is investment return on investment.

                   Denver Listening Session Transcript (Rough Edits)                       25
                                  December 6, 2010
Speaker: Mr. Bob Lawhead
Absolutely, we are looking at ROI all the time now in both employment and residential
services. Community makes sense, financially. Thank you very much. Thank you,
Commissioner. [Applause]

Speaker: Commissioner Lewis
We have Ms. Korri Ward and we have Ms. Carol Meredith on deck.

Speaker: Ms. Korri Ward
My name is Korri Ward. I am from Elko, Nevada. It only took 16 hours to get here
yesterday. I just said that so you know how rural Elko is, in case people don't know.
We're halfway between Salt Lake and Reno on I80.

I was raised with a brother who has disabilities. He is 4-years younger than I am. I have
17-year-old twin sons, both which have disabilities. One son has been accepted to two
colleges. Whereas the other son, we are trying to navigate a very confusing adult systems
and futures planning, and that is why I am here today.

I am a member of the Nevada Governor's Council on Developmental Disabilities.
Representing the rural area and I'm also a member of the Commission on Services for
People with Disabilities in Nevada, representing the rural area. Prior to being a full-time
advocate, I'm a high school math and science teacher.

Elko has about 30,000 people, we have few accessible sidewalks and business owners
complain about having to accommodate the ADA when remodeling their shops 2and
offices. There are few medical specialists and public transportation is only available
from 7 a.m. to 3 p.m. That does not allow for full-time employment or going out to eat or
going to the theater because the first movie at the theater is at one o'clock it would be
over about three o'clock but there would be no transportation.

The town's deficits often leave parents to send their loved ones with disabilities to
another state. Thank you. Or to move the family to another state in search of services.
When the family moves, they often leave behind a valuable resource, extended family
and friends, aunts, uncles, grandparents and friends and are abandoning hopes of
finding essential service in urban America. I believe it is a critical issue for people with
disabilities to access essential services in their hometown. And benefit from natural
supports provided by family and friends.

In order for people with disabilities to benefit from living in their hometown,
expectations must be raised, services must be accessible, professionals must be educated
and informed, and silo services must be reorganized and merged to raise the
expectations of the individual, all stakeholders must be informed of all options after
high school. There's nothing worse than when the parent know more about after high
school services than what the teachers does or the rural regional coordinator. Those
people are supposed to be guiding, are supposed to be helping.

                    Denver Listening Session Transcript (Rough Edits)                      26
                                   December 6, 2010
Changes need to be opted for families and teachers. Families need assistance in
developing transitioning portfolios and plans. School districts need to provide training
for their teachers and to encourage collaboration with post-secondary agencies. I'm
running out of time. Can I continue? Okay.

Perhaps the schools were to rank their students with disabilities based on them going to
college or technical schools, establishing their own businesses or working in the
community, they would set higher expectations. As it is right now in Nevada, the
postsecondary data is lacking these details. They do have some post-secondary surveys
that they can do but they are voluntary and they're not very consistent or reliable.

Accessing disability services is time-consuming and difficult for families. It is a full-time
job for me. Adults with disabilities are dependent upon their parents to advocate and
provide transportation and fill out paperwork. To improve access, the preferred path
must be the easiest path. One-stop shopping for agencies and providers would improve
access to services. Perhaps some of the individual's application information could be
stored online and simply updated at agency meetings, instead of the entire application
repeatedly being filled out. My brother struggled with that and there were so many
delays in services because he could not fill it out.

In the state of Nevada last year, vocational rehabilitation placed eight adults with autism
into jobs. That is eight that is for voc rehab. We need education-based incentives for
people to be able to build a job, work force, build a workforce, job coach, job developers
and assistance that can provide better behavior-based autism related programming for
these jobs seekers. Also, once people with disabilities are placed in a beginning level job,
they need ongoing supports to be successful at work, as well as ongoing training to
develop additional skills.

Our community provides for services for the very young at Headstart and for the elderly
at the senior center. Low-cost meals are served and activities are planned for these
groups each operating in their own silos separate from the others. The way the disability
center services are set up right now, and the funding that people get, they can't go out to
eat in Elko, but they can't go to the senior center and get a three dollar lunch either.
That is just not right. It seems reasonable for separately funded silos to work together
and to incorporate people disabilities.

On the Nevada commission, Tony Records did a report on looking at Nevada and the
Olmstead decision. He identified primary barriers to expansion of community capacity
for people disabilities to include deficiencies or lack of adequate quantity in several
areas including specialized services for children and adults with autism. The training
and supports needed by people with autism require a new workforce, a therapist,
assistance and consultants to adequately provide services to people with autism through
the lifespan a workforce must be developed. Treatments must be a norm, not just for the
lucky few.

Speaker: Commissioner Lewis
Ms. Ward, can you wrap up please?

                   Denver Listening Session Transcript (Rough Edits)                       27
                                  December 6, 2010
Speaker: Ms. Korri Ward
Yes. In summary, in order for people with disabilities to achieve equity, professionals
must be properly trained and informed. People with disabilities and their families must
be knowledgeable about their choices and the silos of service must be replaced with
community programs for everyone. Families in my town need to feel their children are
welcomed and decision makers need to know that they must provide equity. Thank you.

Speaker: Panelist
Have you asked your son what he wants to do?

Speaker: Ms. Korri Ward
Which one? Both of them?

Speaker: Panelist
What do your sons want to do?

Speaker: Ms. Korri Ward
Did I ask my sons what they want to do?

Speaker: Panelist

Speaker: Ms. Korri Ward
Strangely, my one son is seeking to become a civil rights advocate. The other son, I don't
think we are quite there yet, with what he wants, we are just overcoming several medical
issues. It is our goal, though, as parents, to search out what he wants to do as far as
building his own business.

Speaker: Commissioner Lewis for Panelist John Britton
John wanted to know, if you asked him what he likes to do for fun, that helps to know
what he can do.

Speaker: Ms. Korri Ward
Yes, we ask him all the time. The one that is non-verbal, he tells us all the time what he
wants to work for, what free time he wants and when he wants it.

Speaker: Panelist
Yes. Just a quick question about DD Councils, you said you were on your council in the
Nevada, is that right? One of the original conceptions of DD Councils was to bring all the
silos together around one table. At least that was the promise, initially. So, what do you
think DD Councils, including your own, can do to create that integration that you're
looking for?

                   Denver Listening Session Transcript (Rough Edits)                     28
                                  December 6, 2010
Speaker: Ms. Korri Ward
I can't speak for DD Council outside of Nevada. I can tell you what we are doing in
Nevada. In Nevada, we are doing some outreach. We are doing some disability fairs to
try to bring everybody together so that they can talk about their programs that they
have. We recently did an employment summit and that was also bringing all the
employers together and the stakeholders together to begin talking. But these are things
that just started in June and it is going to take a long time to change the mindsets and to

We get a lot of resistance in Elko. Based on the people that have setup programming the
way it is, they don't want to change. We just need to encourage them. We just want more
choices, but still, not all the players in Elko are at the table for the employment summit.

Speaker: Commissioner Lewis
Thank you. [Applause] We have Ms. Carol Meredith and have we had Ms. Mary Paulsen
show up? No. Ms. Marna Ares? Nope. Okay. Ms. Meredith, you will be our final speaker
before our lunch break.

Speaker: Ms. Carol Meredith
Hello. The title of my talk today, my testimony is "Planning, Portability and
Predictability". My name is Carol Meredith. I'm the Executive Director for the ARC of
Arapahoe and Douglas. I'm also the parent of a young man with autism who also has a
cognitive disorder and a severe behavioral disorder.

I supported many families over the years, to figure out supports and services for their
sons and daughters with developmental disabilities across the age span. I have been
doing this for over 20 years. As a parent, I strive to listen to my son with my eyes and my
ears and my heart. To help him plan and coordinate his education, his employment, his
physical health care, his mental health care, and the intensive support he needs to live
safely in the community every day.

Most families understand the need to plan for their sons or daughters with disabilities,
but find it impossible, because there is no way to predict what supports and services
might be available when. Waiting lists are not time predictable and you can't coordinate
one waiting list with another. So for my son, he had to have access to Section 8 housing
and 24-hour supports at the same time, two separate waiting lists, in order to make it
work, in order for it to be safe and financially reasonable for him.

So, I now recommend that families make several contingency plans. Think about it, if
you have to quit your job for five to ten years to take care of your son or daughter, how
will the entire family survive financially? How will you save for your own retirement, if
you have to quit your job and take care of your son or daughter? Is there technology that
might allow you to monitor your son or daughter's safety while you work? What if you
die or become incapacitated? What happens then? What if your spouse dies or he
becomes incapacitated, what do you do?

                   Denver Listening Session Transcript (Rough Edits)                    29
                                  December 6, 2010
Most parents, whether their child has services or is on the wait list, act as the primary
planner, case manager, medical translator, and advocate. When the parents are gone,
many times it is a sibling that fills this role. My son's brother has a career and a
relationship in another state. It will not be possible for him to care for his brother from
3,000 miles away.

To tell if my son with autism is doing okay, you have to physically spend time with him.
You have to watch, you have to listen with your eyes, you have to listen with your ears,
and you have to feel it. If my son with autism moves to the city where my son, the care
manager, now lives, he would lose the services that have taken years of waiting to
acquire and endless hours to coordinate.

So here are my recommendations. Make home and community-based services for adults
much like the individuals with disabilities education act. Services should be available for
every person that qualifies based on an individualized plan with federal laws, rules and
regulations, so there's some consistency and portability across the United States.

Number two, completely redesign the employment supports for people with disabilities.
Every statistic shows that for way too long, the majority of people with developmental
disabilities are unemployed. These dismal outcomes over this long of a period of time
are completely unacceptable.

Number three, create a nationwide public relations campaign that highlights the
capabilities of people with intellectual and developmental disabilities to garner the
public and political will to accomplish the above recommendations. My experience says
that people with intellectual and developmental disabilities want a life like ours, in the
workplace and in the community with the supports they need, when they need them.
Thank you. [Applause]

Speaker: Panelist
I understand what you are saying. My family didn't plan ahead. I lost my mother at a
young age. So I am glad that people are believing that you need to think of the future
and then community integration. I built my relationship with my community. My family
is my community. So that is so crucial in everybody's life. Disability or not. If you don't
have your community behind you, you won't be successful. Thank you.

Speaker: Ms. Carol Meredith
Thank you.

Speaker: Commissioner Lewis
Carol, I think you're raising some really important and challenging issues. Quite a few
states that I visit, portability within the state is still a challenge, much less portability
across the states. When you think about portability across states, you also then run into,
each state gets to describe what services it wants to provide and the reimbursement rate
for those services; and it has advantages and disadvantages in doing that. So, in your
vision of the future, how would that change?

                   Denver Listening Session Transcript (Rough Edits)                      30
                                  December 6, 2010
Speaker: Ms. Carol Meredith
I think about IDEA and IDEA is not perfect, by any means, it is an exhausting and very
difficult process for most families and individuals with disabilities to navigate. But at
least you have some federal laws and rules and regulations and processes that are
consistent across all the states. So if I have an IEP in Florida, I bring that IEP to
Colorado and that IEP is legally, that document is legally mandated to be implemented
in Colorado until the next IEP is developed.

We don't really take the money, in my original testimony before I cut it down to a
reasonable amount, I talked about the money follows the person concept. I think that is
what we are talking about, but we have to talk about that in a federal way instead of, just
within states. It is very much an artificial--we are a global society. People travel across
state lines, county lines all the time now. It is not like people are static in a very small
community all the time and we have got to modernize our thinking around how to make
being portable, as well as, somewhat consistent and predictable.

When families move from Florida and they come to my office, they've got their IEP and
they understand how to do the public education system. They just want to know how it
works in Arapahoe and Douglas County and I support them to do that. When families
move from Florida to Colorado with an adult family member, it is like, what? They have
no idea, you can't coordinate anything. It is a totally mixed up system. That is, like the
parents said before, it is a full time job, just to keep it coordinated, to understand it, and
then coordinate it and then to make something actionable based on waiting lists that
you can't figure out, because you can't coordinate the waiting lists.

Moderator: Kate Fialkowski
Thank you. [Applause] Let's give a round of applause to all of the speakers that we had
this morning. Thank you very much. [Applause]

I just want to give you a few instructions. We are going to be taking our break for lunch.
If you look inside your folders, you have a sheet of paper that looks something like this.
If you can find it. This hotel has made some arrangements for an express lunch and you
have four different lunch options on this menu. These lunch options are available at
either the lounge or the restaurant. So wherever you would be more comfortable. If you
have any special preparation requirements in the food, they are happy to help you, just
tell them at the time you are ordering your lunch.

The lounge is located on the lobby level. The restaurant is located on the atrium level,
which is one level up from the lobby. The atrium level is, press "A" in the elevator and
the lobby level is to press the letter "L" in the elevator. So we have one hour for lunch.
Please return here and we will begin our afternoon discussion continuing with

As a reminder, ADD staff has the white flags, we are here to help you, and take
advantage of the panels' presents during your lunch hour so you can spend some time
talking with them. They have the red flags on their name tags. See you back here. Thank

                    Denver Listening Session Transcript (Rough Edits)                        31
                                   December 6, 2010
[Lunch Break to be followed by PM Testimonies]

Moderator: Kate Fialkowski
So, how about that lunch? You guys, every time we try to make an adjustment for
improvement, it has something called unintended consequences. You got the advantage
of the option of hot meals and choices for lunch. Which is a positive. The negative was
we didn't realize it would take 20 more minutes. Thank you for your flexibility. And we
should be just fine this afternoon.

But, again, I just want to caution all of the speakers that, number one there will be two
names called. The first one called is the first speaker up. The second name called is a
warning for the second name. Also, you have about 3 to 4 minutes for your presentation.
And we're going to have to keep to that timetable. You may notice that we have a new
panel. The afternoon panel. The first thing that I would like to do is invite the panel to
do introductions of themselves. I don't know who would like to start. Bob would you like
to start?

Panelist Introductions (afternoon)

Panelist: Mr. Bob Williams
I am Bob Williams. I am a recovering former Commissioner of ADD. [ Applause ]. And I
am now with the Social Security Administration's Ticket to Work and employment
support programs. It is great to see some new faces as well as many long-time friends
and colleagues. I could have said, increasingly older. [ Laughter ] . But I decided to be
tactful. [ Laughter ] .

Panelist: Ms. Nancy Thaler
Hi, I am Nancy Thaler and I am the Executive Director of the National Association of
State DD Directors.

Panelist: Mr. Ari Ne’eman
Hi, I am Ari Ne'eman. President of the Autistic Self Advocacy Network, and a member of
the National Council on Disability.

Panelist: Dr. David Braddock
Hi, I am David Braddock. I am a recovering Illinoisan, now living in Colorado, where I
am Executive director for the for the Cohen Institute on Cognitive Disabilities and
Associate Vice President of University of Colorado systems. And proud director of the
State of the States in Developmental Disabilities project.

Panelist: Ms. Cathy Enfield
Hello, I am Cathy Enfield. I have a developmental disability.

Speaker: Mr. Richard Enfield
I am Richard Enfield, I support Cathy. [ Applause ].

                   Denver Listening Session Transcript (Rough Edits)                   32
                                  December 6, 2010
Adulthood (afternoon)

Moderator: Kate Fialkowski
Thank you very much to the panel. The commissioner does not have any new welcoming
remarks because she will have closing remarks. We are going to continue with the
adulthood topic. Just as a quick reminder, the adulthood topic, ADD proposed the
following question, in the future, what will be the most important contributing factor 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 are there other issues that we have not listed? Commissioner, would you like to call
the first two speakers for this afternoon?

Speaker: Commissioner Lewis
Good afternoon. We will be starting with Mr. Ryan Duncanwood and we will have Mr.
Dylan Kuehl on deck.

Speaker: Mr. Ryan Duncanwood
My name is Ryan Duncanwood and I'm 35 years old. I have cerebral palsy and I used a
computer to communicate. I was born and raised in California. I have been active in the
advocacy and augmentation field most of my life. I enjoy participating in sports, attend
Shasta College and live in my own home with a roommate and our support staff.

I have been using a computer to communicate since I was a kid. I have been fortunate to
have had many devices as technology has advanced and I've had the benefit of lots of
training on my communication devices throughout the years. Many of my peers could
benefit from the use of communication devices, but not all of them have been given the
chance. The ones who have been provided a communication device have not had the
opportunity to receive proper training on their devices.

So they're still left without a voice and that is not okay. Everyone deserves a voice. I
think we can all agree on that. In some of the more urban areas of the country, there are
resources for people with disabilities who use an AAC and receive training. But in the
less populated areas there is not so much access to it. My friends and I would like to see
more support for AAC training. In those areas where it is not yet available. And we
believe as people who use AAC we can be effective as peer teachers.

In order to do this we need funding so that peer to peer trainers can travel together to
get accreditation and can organize and reach out to the people who need training from
us. There are at least 20 people here who could benefit from this service, so imagine how
many people there are nationwide. How can people learn, teach, contribute, or exercise
self-determination if they cannot communicate? In this country, we believe in freedom
of speech for everyone. Right?

                   Denver Listening Session Transcript (Rough Edits)                    33
                                  December 6, 2010
It is our responsibility to make sure everyone has a voice to speak with. My vision for the
future is that everyone should be given the chance to express their wishes, hopes and
dreams. I would like to invite the Administration on Developmental Disabilities to help
us with this project so everyone can have a voice. There are other self advocates and
others who feel strongly about this problem and are willing to be part of the solution.
But we need the support to make it happen. Thank you for the opportunity for me to
share my thoughts with you here today. And I look forward to hearing what everyone
else has to say. [ Applause ].

Speaker: Panelist
Ryan, Thank you for speaking up. My question is, what, in addition to funding, could the
Administration on Developmental Disabilities do to focus a bright light on the fact that
so many people with intellectual and developmental disabilities are without an effective
way to express themselves?
[Question Repeated]

Speaker: Mr. Ryan Duncanwood
Just funding. [ Laughter ] [ Applause ].California is broke. My agency has taken about
seven cuts. Thank you very much. [ Applause ].

Speaker: Commissioner Lewis
Thank you very much. Okay, we have Mr. Dylan Kuehl and then on deck we have Ms.
Gerrie Frohne .

Speaker: Mr. Dylan Kuehl
I am ready. Hello everyone thank you for letting me have the opportunity to speak
today. My name is Dylan Kuehl . And I live in Olympia, Washington. I was taught early
in life not to be afraid. To reach for my dreams. For my abilities. When I was 19, I was
excited and enthusiastic. With the help of my mother, I started my employment journey
with a division of vocational rehabilitation or DVR.

We knew my skills and talents and what I wanted for employment. But DVR had a
different plan for me. This is when I realized how important it was to have someone to
help me with DVR. Without the help of a parent or a strong advocate, I am sure that my
voice and wishes would not have been heard.

In 2002, DVR employment policies required that I fail at traditional employment before
I could choose supported employment. Yes, it is a shame. For the next two years, I did
just that. I may have Down syndrome but even I know this is wrong. Good thing for me,
my mother and I are not quitters.

In 2004, their policies changed and I was able to request a DVR counselor to help with
this type of employment. My DVR case closed in 2005. I acquired long-term funding for
my employment support. So my case was transferred to my county's division of
developmental disabilities, or DDD office. The agency manages my -- funds and
employment support.

                   Denver Listening Session Transcript (Rough Edits)                     34
                                  December 6, 2010
Since the start of my business, the success of my job has been measured, not by the level
of my happiness. I have been a positive influence in local and national and international
communities. Or how much satisfaction I gain for being rewarded for my social skills, to
name a few. But instead, by how much my business profits. When determining profit,
traditional employment is connected to an easy formula. I work one hour, earn my wage,
and put that money in my pocket.

Profit is easy to calculate. Self employment uses a different format. There are business
expenses and there are many hours for which I do not get paid. Profit is more different
to calculate. My business is--national consultants will agree, marketing is the key to
success of a small business. Marketing helps a business make more money. When I
requested funding from DDD for marketing, they refused, stating restrictions on my
employment support. I am sorry. That is okay. I lost. That is okay. I am sorry folks. Yes,
I agree.

Now, I will share some ideas for change. Please consider the following. One, marketing
is crucial. I would like to see a commitment by all regions of DDD to show support of
those who choose self employment. Fund a committee to create a national directory a
product and services by business owners receiving funding support. Don't just talk
about being supportive of self-employment, show us. Myself and my mother, Terri Rose,
will volunteer to be on this committee. To develop consistent self employment policies.

The area I live in should not determine my funding. Help me believe I will be heard and
treated equally and fairly. Pre-self employment training is crucial for individuals with
disabilities along with DDD staff individuals who support those in self employment.
Allow for flexible funding for outside area trainers. Thank you for listening. [ Applause ].

Speaker: Commissioner Lewis
Good job. Does anybody have a question? David?

Speaker: Panelist
I would like to ask Ryan if he feels that self employment should be promoted by the DD
Councils and in the developmental disabilities act? Do you understand the questions?

Speaker: Mr. Dylan Kuehl
Is that a question?

Speaker: Panelist
Do you think self employment should be promoted in the developmental disability act?

Speaker: Mr. Dylan Kuehl
It should.

Speaker: Commissioner Lewis
Thank you. [ Applause ]. Does anybody else have a question? Nancy?

                   Denver Listening Session Transcript (Rough Edits)                     35
                                  December 6, 2010
Speaker: Panelist
I have a question. Cathy said, You spoke about the need for a strong advocate to help
you reach your goals, which was your mother. Do you see a way to make sure that others
have a strong advocate, who may not have had a strong family member like you did?

Speaker: Mr. Dylan Kuehl
Try building a team of supporters that would say yes to your dreams and abilities. And
never give up. And don't let anything negative stand in the way. [ Applause ].

Speaker: Commissioner Lewis
Thank you, you did a great job. If we could have Ms. Gerrie Frohne and we have Mr.
Mike Hoover on deck.

Speaker: Ms. Gerrie Frohne
Hello, I am Gerrie Frohne and I am from Lakewood, Colorado. My oldest son is 39 years
old. And he is needing a job. He has had two community jobs for about 20 years. He
recently lost one due to the economy with that employer.

My topic today is employment. Because of the experience that he has had. But he enjoys
being employed, and benefits from that obviously, as we all do. The three solutions that
I wanted to speak about today, first of all, I would recommend better use of community
employers. The community employers I have seen are disconnected from the
bureaucratic systems and the funding sources. And really don't have much idea of how
they could be better contributors.

I think the people who have been successful in customized employment or any
employment for people with developmental and cognitive disabilities. Those employers
who have employed these people have been very satisfied and feel that they have gotten
great, successful long term relationships. But I think there's a big disconnect between
what is happening there, and there aren't enough situations, and the systems that are
supposed to be helping with this.

An additional solution I feel would be, we have different people who refer to themselves
as silos. Such as developmental disabilities, vocational rehab services, the education
system, Medicare and Medicaid and Social Security and Aging. I think they need
leadership from the very top of those administrations. I know there are individual case
managers who and very dedicated and work for a hard. But, I think until you have a
verbal or written or memo of understanding type of commitment and leadership of all of
those groups nationally and internationally, the true commitment doesn't flow down to
the people who are actually trying to help folks. And I can give examples of that. Rather
than take up time...

The other solution --this has existed for ages, we can see from the successful self
advocates here today, a lot of individuals themselves and their families have gone ahead
and solved the problem of an employment. They have done this individually with their
own networks. Sometimes because they're fortunate enough to have some money or
fortunate enough to have some time, which sometimes money buys time in a family,

                  Denver Listening Session Transcript (Rough Edits)                   36
                                 December 6, 2010
they have found solutions. But it is like the system never cares or even asks how a family
solved this.

I know the developmental disability system never even wanted to hear that my son
pretty much found a community employer. Because there was no funding stream there.
He just happened to have a part-time job. That we found through family connections.
And that lasted almost 20 years. There is this big disconnect. And I don't know how to
solve this and put this all together except the people who have some funding. Who are
the heads of these administrations. To get together.

To say that the world be a better place if more those people also happen to have
challenges and needs. And it is obviously would help everyone. And why are we doing so
much talking and so little walking with this issue? I think there are elements there that
are solutions focused. And I think it starts at the top. And I don't know what the
Administration for Developmental Disabilities can do about that but if you have other
friends in high places, and I would encourage you to connect with them and see if
something could get going Because it just seems--my son is 39, so for 39 years I have
been aware of these issues, and I don't see except for the fabulous cases that some
individuals here today. There's not a whole lot of massive difference.

Thank you very much. [ Applause ].

Speaker: Panelist
Hello. It is really great to hear but the success of your son. And more than one person
has said that behind the success of every great man is a great woman. I want to ask you a
question, it may seem a little challenging, but I really want to understand. In cases like
you described, where your son, through connections and personal contacts got a job and
is doing fine. I thought--what I heard you say is it's like the system doesn't know that.
Because there's no funding stream. I just want to understand why does the system need
to know about people when they independently and with their own personal resources
achieve successes?

Speaker: Ms. Gerrie Frohne
Thank you for the question. When my son has an annual plan through the DD system--
all that stuff--and you mentioned, obviously, that he has a job, they don't want to
document that anywhere. But, Wouldn't it be nice if that employer could get connected
with other employers if someone cared that there is an employer who already had some
experience supporting someone with a lot of challenges and needs. And there are these
little islands out there of employers. When a family approaches the Chamber of
Commerce or rotary, Kiwanis groups, these groups are very welcoming. But the families
are kind of at a disadvantage time-wise to be doing this. And I never see the systems--
bureaucratic systems trying to engage community employers. In any kind of a
networking, ongoing process.

                   Denver Listening Session Transcript (Rough Edits)                    37
                                  December 6, 2010
Speaker: Panelist
Sorry, I have a quick follow-up question. I was just wondering if you could talk a little
bit about how you would envision about what that would look like?

Speaker: Ms. Gerrie Frohne
In terms of outreach to the community employers? Clearly, it is necessary. But I would
imagine that a lot of service provision systems and funding systems are probably at a
loss of how to build those kind of public private partnerships. One way would be to take
advantage of how many families in this country and individuals themselves have some
sort of label of disability? Look at all of the assets those folks bring to the table in terms
of knowledge and networking abilities. Nobody ever wants to ask us who we know who
might be in an employer situation. That would be one way. Also, I know that in
Colorado, and I think he spoke about this morning, Bob Lawhead who is connected with
Project Search, which is a nationally funded project for employment, they do and are
now connecting with some community employers. And getting some good things done.
That is one little agency that is way down the bureaucracy. They're just a program
approved service agency. How many layers of bureaucracy to get down to there? And
that's one little group. That should move up to the top of the priorities.

Speaker: Commissioner Lewis
I think that Bob has one other last question.

Speaker: Panelist
I agree that one of our greatest downfalls is that we are so focused on the big problems
that we do not see or share the successes. How do we begin to change that and build on
what works?

Speaker: Ms. Gerrie Frohne
Well, both top-down and bottom-up. If every time an individual had an annual planning
meeting someone actually asked the individual or the family if they have some
connection in the community, some resources that they already bring to the table. Many
are intimidated and just sit there and just accept information. But if you are never
asked, how are you ever empowered to bring anything forward? In order to do that,
there has to be--like in a school, if a principal doesn't have a vision for that school
community, then that vision, nothing circulates down to the teachers, aids, parents, etc.
If the silos never focus on the employment issues, it's a waste of talent all over the place
and then the case managers never told, with piece of paper, by the way, ask the families
about resources. You gotta put it all together.

Thank you very much. [ Applause ].

Speaker: Commissioner Lewis
We have Mr. Mike Hoover up. And then we will be moving into our aging group and
then Dr. Judith Holt will be on deck.

                    Denver Listening Session Transcript (Rough Edits)                       38
                                   December 6, 2010
Speaker: Mr. Mike Hoover
Denver Envision. Topic area is Adult. Title is increase employment opportunities for
adults with disabilities. Mike Hoover. I am on the Colorado developmental disabilities
Council as a self-advocate. I think the need for employment for adults with disabilities is
a very urgent need.

I see my friends and other community members who have skills and get job training in
school, but when they get out of school they sit at home or go to segregated activities to
keep busy. I think the administration needs to help pave the way for more employment
by having the people in the vocational rehabilitation be able to follow a person in their
job beyond the initial training period. The employers can be advocated through media
and groups like the Chamber of Commerce about the reliability of workers with
disabilities and how to effectively accommodate them.

I think I need to tell you I have had experience in a variety of jobs and I had trouble and
the follow up was not there. My current job in the brewery can get boring but it is a lot
better than being totally bored at home. I have transportation but people in rural areas
have a harder time. Funding for transportation can help people get to their jobs and they
can share the cost.

I need the people who help find jobs for us get adequate training to know about
accommodations, the way to properly present the coaching and be committed to the
employee's success. I think the more people are seen out in the public, the more barriers
will fall away. I hope I get to see this happen, where employment is the normal way of
life for everyone who can work in any manner, even small tasks.

I think I need to focus to be on members sharing their community as valued members,
both at work and the rest of community life. I need to have you keep employment a
priority in your plan. I need to thank you for coming.

Thank you. [ Applause ].

Speaker: Commissioner Lewis
Panel, do you have questions? David?

Speaker: Panelist
I was just wondering if I could ask you, are you finding it more difficult for your friends
to find employment for friends who have disability, to find employment in this
economy. If so, do you have any ideas about how you might help promote that outcome?
How we might?

Speaker: Mr. Mike Hoover
Yes, I think we do need better effort to carve out jobs to match skills. There is always
work to be done. The people who look for jobs, even as their everyday tasks, and not just
once a week.

                   Denver Listening Session Transcript (Rough Edits)                    39
                                  December 6, 2010
Thank you. [ Applause ]. That is all.

Speaker: Commissioner Lewis
Thank you. Thank you very much. We will have Kate read the question here again in a
moment on aging and we will have Dr. Judith Holt join us next and Ms. Sheree Lloyd
will be on deck.


Moderator: Kate Fialkowski
The next topic is aging. ADD proposed the following question, aging concerns effects us
all. The number of adults with developmental disabilities age 60 years and older is
projected to nearly double from 642,000 in the year 2000 to 1.2 million in the year
2030. what can we do to empower older individuals with development disabilities to
remain in their own homes. With the 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. Thank you.

Speaker: Dr. Judith Holt
Good afternoon, I appreciate the Commissioner holding these meetings. I was
encouraged when Bob almost said that we were increasingly getting older. If you will
note, there are two of us testifying about the aging issue and I think it is imperative that
we not only discuss it briefly but we discuss it in much more depth. I am from Utah.

In Utah, aging adults with developmental disabilities, their families, their support
system, their friends, their networks, are all aging along with them. In fact, we are not
proactively addressing the needs that these individuals have. The support systems were
designed at best, to support individuals who were adults, hopefully working, hopefully
living in the community, they were not really designed to address individuals in their
70s or their 80s and yet, these individuals become the most vulnerable, after years of
being able to maintain community participation, being members, and doing what they
want to.

They are now being more and more limited, because of age and the accompanying
physical and sensory and cognitive and just generally medical things that come with age.
I'm not sure why we don't think about this as much, perhaps because none of us want to
think about what is going to happen to us too, but as a field, I don't think that we are
giving it sufficient attention. We also, because of our silos, we mentioned earlier, we
have a silo for older adults and we have silos for people with developmental disabilities.

And even though there is a number of similarities, as well as, a number of differences,
often, those silos are not communicating or sharing or working together to really
understand the supports that are needed. I don't think we have developed, in most
states, a sufficient infrastructure to address the needs of aging individuals with
developmental disabilities. I think there is a great movement in the self advocacy

                   Denver Listening Session Transcript (Rough Edits)                      40
                                  December 6, 2010
movement, and I am hoping that the self advocates, as well as family members and
others will push this agenda forward.

We do have opportunities though, that I think are available that, perhaps ADD could
take the lead in. Currently, through CMS, there is a concept of long-term care options
and those are being played out in different states under the heading of Aging and
Disability Resource Centers. They are playing out a little bit unevenly in terms of the
presence of disabilities and even more unevenly, the presence of individuals with
developmental disabilities.

The concept of beginning to think about long-term care options and planning, that
addresses some of the very complex issues, both for those receiving funding, for those
that are on waiting lists, for individuals who perhaps never receive federal funding,
being able to think through with families and support networks and most importantly of
all the individuals themselves, what their preferences are, where they want to be, what
kinds of services they need to remain in the community and remain a participating
member. You have to take into account wills and trusts and guardianships and advanced
directives. It takes a lot of expertise.

It is my hope that ADD will take the lead in working not only to address the training
needs of supports to provide individuals that support for aging individuals with
developmental disabilities, but also to work with the Administration on Aging to initiate
new initiatives in this area. Thank you.

Speaker: Panelist
I am really glad you are raising this issue. Particular, that related to how the DD and
aging infrastructure work together. My question is related to, specifically, the aging
infrastructure. You mentioned the ADRCs and there are a number of other examples. To
what degree does the support infrastructure for aging individuals understand the needs
of people with developmental disabilities? And what do we need to do to help them
understand those needs?

Speaker: Dr. Judith Holt
I speak from my experience in Utah. I think all the rest of the states have figured it out.
So this won't apply to them. [ Laughter ]. Basically, in Utah, the aging folks think that
the developmental disability folks get all the money and vice versa. The aging folks tend
to be much more concerned with medical and health and safety issues. And perhaps less
understand the importance of choice and individual preferences. They focus a bit more
on what is a good, secure place for people, which is often nursing home or assistive
living. Versus the kinds of flexible supports that you would need to continue living in a
community. Now I'm not saying that categorically necessarily, but you asked for general
differences. The idea, well first of all, most people who are aging and getting aging
services, generally do not consider themselves to have a disability. Even though they
have serious significant visual or hearing or physical or health conditions. So they do not
ally with the disability community as much, even though there are a lot of similarities.

                   Denver Listening Session Transcript (Rough Edits)                      41
                                  December 6, 2010
Speaker: Panelist
Thank you. A basic question. In Utah, as in most states, you have a intake system, a DD
system that people relate to? And the ADRCs are fairly new on the scene. Do you want
both to be competent in serving older individuals with developmental disabilities? Or
are you looking for a world where at some age, the ADRCs pick up?

Speaker: Dr. Judith Holt
The ADRCs are intended to be competent in serving both groups. Now how that plays
out varies. However, in a rural state, it is highly unlikely you are going to find parallels
systems to serve. I think we have to understand better in the DD community that some
of the aging issues and I think the triple-As need to understand better some of the DD
issues. We'll still have pockets of expertise, but I think there has got to be some expertise
that is in both areas.

Speaker: Panelist
If I could push a little on that issue. In public systems, resources for administering
systems is always an issue and no government likes to duplicate, they don't want to
duplicate and families need some clarity about where they go. I guess my original
question that I was trying to get is, if both systems have competencies and both systems
are expected to be able to meet the needs of individuals who are older, how is that not
duplication? And how do you create clarity for the individual and families?

Speaker: Dr. Judith Holt
I think the families are the individual with a disability or the individual who is aging,
they would end up selecting a place where they would feel most comfortable. I know we
worry, at least they worry at the state level about duplication. I see a lot more gaps then I
see duplication, in reality. I also think that if someone in the triple-As are working with
someone who has a developmental disability, their working with them the best they can,
but they know they need more expertise and then they find partner in the other system
and vice versa. At least we are trying to explore those kind of options.

Speaker: Panelist
Thank you.

Speaker: Panelist
Yes, I just wondered if you see any utility in the forthcoming revisions of the
Developmental Disability Act and there being any priority attached to aging? It has been
a priority in the past that the UCEDD network has worked around and with and now the
nation for aging, even more rapidly than it was 10 or 15 years ago when the aging
initiative started, what should we do in the DD act in relation to prioritizing this as it
relates to the UCEDDs?

Speaker: Dr. Judith Holt
I think it needs to be, everything is a priority. I think it needs to be a high priority, given
the fact that there is very little systematic attention paid to it. Either on a policy level or
a practical level with states. For instance, if you are a direct service worker working in
the DD field, and you have been supporting someone with a developmental disability

                    Denver Listening Session Transcript (Rough Edits)                        42
                                   December 6, 2010
who is 40, and they want you to support someone who is 75, odds are you are going to
have to have a slightly different skill set. There is a whole lot of training that has to go on
and understanding and I think it would have to go across the system. I would hope there
may be some pilots or demo kind of things that could happen, in addition to getting a
national policy discussion about it.

Speaker: Panelist
Yes. Could you comment on two things? First, we know that for many people with
intellectual and developmental disabilities, aging processes begin earlier and second,
this is obviously a critical and fairly lengthy transition point, how do we address both of
these realities in both the DD Act and public policy at large?

Speaker: Dr. Judith Holt
One of the things that I think is the point you just mentioned about the fact that we
know that the aging processes often occur earlier, or may occur earlier in the population
of developmental disabilities. I would think the ADRC model where the triple As deal
with people like over 65 that have to be there, but there is no limit, in terms of what the
disability groups can do. And they can start this transitioning, long-term care options,
looking at what this means for your various funding streams. And what it means for
things that you need to plan in the future. They can start that much earlier. I think that
is critical to do that, I think it's critical for everyone, but especially for that population.

Speaker: Commissioner Lewis
Thank you very much. [ Applause ]. We have Ms. Sheree Lloyd.

Speaker: Ms. Sheree Lloyd
Can everyone hear me? My name is Sheree Lloyd. I belong to the family Council. I am
from Phoenix, Arizona. And I want to talk to you about when I get old. I don't want to
live in a care facility. I want to live in my own house. I already do that. I want access to
services and I want to let people know my needs and wants. And I want to have time and
I want to have other people spend time with me. And I want to ride the buses and go to
work. And have my own, do not cut my wages. In control of my money. And learn self-
determination. And I belong to OASIS self advocacy group. And I want doctors to
explain my body as it gets older. And I want to exercise and eat good food. And go to
school. And have a family. And be able to go to the movies and go out to eat. Thank you
very much. [ Applause ].

Speaker: Panelist
Thank you for sharing that. What kinds of new types of support that you may not be
receiving now, do you think you would find helpful, as you get older?

Speaker: Ms. Sheree Lloyd
Well, when I get older, I eventually want to have a care nurse. Maybe a wheelchair. A
electric wheelchair to get around my house. If I need to. And then, maybe, somebody to
go shopping for me if I cannot do it myself.

                    Denver Listening Session Transcript (Rough Edits)                        43
                                   December 6, 2010
Speaker: Commissioner Lewis
Any other questions?

Speaker: Panelist
Just one question. What do you do now for physical activity? And what would you like to
do, as you get older?

Speaker: Ms. Sheree Lloyd
Now, I work at the Grand Canyon. I work at the University of Grand Canyon, right now.
That is my job. And that is my exercise. And I pick up trash for the campus, for the kids.

Speaker: Panelist
So, you are saying your job provides you with the physical activity? What would you like
to be provided, that you could participate in, in your own community, for example the
YMCA or the recreational centers?

Speaker: Ms. Sheree Lloyd
Also, I belong to OASIS. But I am going to use a treadmill.

Speaker: Panelist
Thank you very much. [ Applause ]. Do you like your job?

Speaker: Ms. Sheree Lloyd
Yes. I do like my job. There are other people around me, other self advocates, out there
with me and we do a lot of things when we got to camp. We ride horses. They help us.
The people help us to get on the horse. And we talk to DDS. And sometimes we kick the
staff out. [ Laughter ] . We tell them to go. We say this is our time. It's not yours. What
are you doing here? [ Laughter ] . We go in September. We get together. We put our
money together. We take all the vans and we drive up there to Payson. We have a lot of
fun up there. And we get t-shirts and we write our names on it and we sign it with
different people's names. We have a race to see who wins.

Speaker: Commissioner Lewis
It sounds like a wonderful time. Thank you so much, Sheree.

Moderator: Kate Fialkowski
That is all we have to speak on the aging topic. We are going to take a 10 minute break
and reconvene at 2:20. Thank you very much.

[ The meeting is on a 10 minute break and will reconvene at 2:20 p.m. MST.]

Moderator: Kate Fialkowski
This is your two-minute warning. Will the ADD staff start bringing in people from the
hallway, please? Welcome back. We are going to begin momentarily. You can tell that we
are slave drivers because we don't even give the panel a chance to go to the restroom.
They just snuck out. We are getting ready for the last topic of the day. I think this could
be an appropriate time to give everybody a round of applause for their testimonies

                   Denver Listening Session Transcript (Rough Edits)                      44
                                  December 6, 2010
today. [ APPLAUSE ] Our last testimony topic is surrounding supports. I just want to
say thanks, in particular to everyone in this region. This topic has been one of the topics
that we have had very few people sign up for and we are so pleased to see that in Denver,
we've had so many people sign up for this topic. Thank you very much for the topic of


Moderator: Kate Fialkowski
Supports means supports from families, caregivers, professionals and other allies. ADD
proposed the following question. Over 75% of people with intellectual and
developmental disabilities 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 supports. How can we address the future caregiving and support
challenges of communities, families and the allies who care about people with
developmental disabilities? Commissioner, would you like to call the next speakers

Speaker: Commissioner Lewis
If we could please have Mrs. Emily Tanis and Dr. Barbara Wheeler.

Speaker: Mrs. Emily Tanis
Good afternoon, first I would like to thank the Administration on Developmental
Disabilities for putting together such a wonderful series and allowing us all the
opportunity to speak on such important topics to us. My name is Emily Shea Tanis, I am
a instructor fellow at the University of Colorado at the Coleman Institute for Cognitive

I am here today speaking as a family member and as a member of the National Sibling
Leadership Network. The Sibling Leadership Network is an organization of siblings,
family members, professionals, educators and others dedicated to the promotion of
family support and empowerment for people with developmental disabilities across the
life span.

Our purpose is to establish a network of the siblings to share the experience of disability
and to connect them to social, emotional, governmental and provisional supports across
the lifespan, so that we can better advocate with and for our brothers and sisters.

As mentioned, there is approximately 75% of adults with developmental disabilities that
live with family caregivers primarily parents. 25% of these caregivers are over 60.
Between budget restraints, aging caregivers, it becomes even more critical to enhance
natural supports such a siblings as caregivers.

Even though most of us know that we are the natural next step in the caretaking support
chain, we don't know how to prepare for that role. Our knowledge is limited and we have
little to no access to supports and services. My brother, Coley, is a 38 -year-old man with

                   Denver Listening Session Transcript (Rough Edits)                     45
                                  December 6, 2010
an intellectual disability. Like many other siblings, I was positively influenced by him
and watching him to become an advocate in professional in the field of intellectual and
development disabilities.

However, even as a professional in the field, I am left with few resources to support my
brother as he engages in what I like to call the third wave of transition from parental
supports and services to sibling supports and services and care. This has been an
incredibly difficult transition for myself and my parents. Mainly, because there is a lack
of available transition supports and a lack of knowledge specific to my brother that my
parents have gained through years of advocating on his behalf.

As a result of similar experiences faced by many siblings across the nation, the Sibling
Leadership Network has developed a series of suggested policy changes, research
initiatives, services and supports, and strategies that ADD can adopt and/or administer
at the national state and local levels to better support siblings and subsequently their
brothers and sisters with disabilities.

Today I am going to highlight four of those recommendations. Number one, redefine the
term family in legislative documents to explicitly include brothers and sisters to ensure
their involvement in all programmatic and systemic initiatives. Number two, enhance
the collection and analysis of national family support data to include issues and trends
that is relevant to siblings. Number three, include all types of family members, in
addition to parents, as representatives on state developmental disability councils. We
would particularly suggest one seat be occupied by a sibling representative. Number
four, create programs to reach out to, inform and involve siblings of people with
disabilities. We suggest the development of special ed programs to support siblings at all
life stages. Along with including siblings and family trainings, research, grant activities,
access to information about available services and supports, respite worker and
volunteer training and recruitment and future planning. Providing siblings with services
is a low cost, high impact means for improving the lives of people with disabilities and
their families. Because supported, informed siblings are more likely to remain lovingly
involved in their siblings' lives particularly when parents are no longer able to act as
caregivers. We are dedicated to carrying on the legacy of our parents, to ensure that our
brothers and sisters continue to have opportunities to lead lives of independence,
dignity, love and joy. Thank you. [ APPLAUSE ]

Speaker: Panelist
I am not so sure I have a question, as to tell you how excited and thrilled I am about
your testimony because I represent here the state agency DD directors I think there is a
reluctance in the state agencies to even think about relying on siblings because you're
not supposed to. To have leadership come forward and say no, we are siblings and we
want to be involved and engaged, is very welcomed. So thank you for your comments. I
don't have a question.

You spoke of the National Sibling Network and as a member of Self Advocates Becoming
Empowered, we strongly supported your organization for several years. Are you working

                   Denver Listening Session Transcript (Rough Edits)                     46
                                  December 6, 2010
with other national organizations to gain their support and cooperation also?

Speaker: Mrs. Emily Tanis
Yes, we are currently in negotiations with other organization looking to enhance and
outreach to other siblings through a larger network. Yes, we are.

Speaker: Panelist
Forgive me for not asking you a question, but actually, I do have one. It builds on what I
said. What should state DD systems, DD directors and DD operators be doing to engage
with siblings, both at an individual person level and systemically?

Speaker: Mrs. Emily Tanis
There is a reluctance to involve siblings. There is also a reluctance for siblings to get
involved. However, many of us are looking for opportunities. There is no outreach.
There's nothing that says that siblings can get involved. So starting there, to kind of put
a word out that they are welcomed, they are welcomed at the table to start early. That is
a great place to start. But as we start this initiative to move forward and involve siblings,
we need to really get out to each and every individual through national networks,
through national outreach, because otherwise they don't know that they are welcomed. I
would say starting just to do the minimal outreach and let them know that there is a
place for you at the table right now.

Speaker: Panelist
What can we do to create a conversation between brothers and sisters, with and without
disabilities on what the future could look like?

Speaker: Mrs. Emily Tanis
I'm sorry, what was that?

Speaker: Panelist
What can we do to create a conversation between brothers and sisters, with and without
disabilities, on what the future could look like? How to begin the conversation between
brothers and sisters can do to start the conversation on what the future would look like,
involving ADD, to encourage the conversation?

Speaker: Mrs. Emily Tanis
I do move back to just letting people know that they are welcomed at the table. I really
do believe and most siblings do believe that they are not welcomed right now and there's
not a place for them. So outreaching, to say that you are welcomed and maybe
developing positions that could be specific for siblings. In terms of looking at future
care. Thank you very much. Appreciate it. [ APPLAUSE ]

Speaker: Commissioner Lewis
Next, we have Dr. Barbara Wheeler and Mrs. Lorie Regier on deck.

                   Denver Listening Session Transcript (Rough Edits)                      47
                                  December 6, 2010
Speaker: Dr. Barbara Wheeler
Good afternoon. My name is Barbara Wheeler and I am the associate director of the
USC UCEDD in Los Angeles. Today I am speaking as the chair of the Multi-Cultural
Council of the Association of the University Centers on Disabilities, AUCD. The Multi-
Cultural Council is made up of representatives from UCEDD and LEND programs
throughout the nation and also has a seat on the AUCD Board. Our mission is to support
the needs and preferences of individuals with DD and their families, from Latino, Asian
Pacific Islander, African-American, American Indian and other diverse cultures. While
not all cultural groups have the same experiences, we know that many groups are not
aware of their rights for services, have difficulty understanding and navigating systems
and using due process to resolve disputes. Consequently, some groups with children
with DD get identified much later than their peers.

People use providers who speak their language but do not necessarily know disability.
They use providers who know disability, but do not understand the culture of the
individual seeking the service. Families choose more restrictive environments for
services because they worry about how their children will be treated in inclusive
environments and they worry enough to keep them in restrictive environments. People
of color are not consistently present with self advocates and family members at the table
where DD policies and systems performed decisions are made. Using the mechanisms
available for the administration, we recommend the following to the administration.

As the agency responsible for promoting the values of the DD for all people with
developmental disabilities, we strongly urge ADD to develop an explicit vision and
specific strategies to more uniformly implement sections of the DD Act which already
articulate expectations and requirements for all programs funded under the act to
address the needs of diverse populations. Such strategies might include one, creating
mechanisms and incentives to assist programs, to strategically diversify their leadership,
staff and CACs to reflect the race and culture of people in their states so the experiences
of the diverse populations is part of the decision-making structure of programs.

Two, identify, disseminate effective strategies for student recruitment and retention to
increase the number of students from diverse cultures, entering and graduating from
UCEDD training programs, so we have qualified minorities coming into the field of DD.
Invest in effective programs to develop the next generation of self advocates and family
members leaders from diverse communities to actively participate in advocacy policy
and systems change efforts. The focus of these programs must be on deep, long-term
training and mentorship to be effective, not just a one-time training. Experienced
leaders of color should be call upon to have a prominent role in designing and
implementing and evaluating these efforts.

We urge ADD to promote self-determination models which reflect diverse cultural
values yet recognize that all people want to make decisions about their lives. We also
urge ADD to support state level DD network collaborative activities which promote
systemic change efforts to eliminate institutional bias experienced by people of color
with developmental disabilities and their family members.

                   Denver Listening Session Transcript (Rough Edits)                     48
                                  December 6, 2010
Finally, in collaboration with other federal agencies, which are the Centers for Disease
Control, the Maternal Child Health Bureau, the Office on Minority Health and --
develop a national data collection and dissemination system to monitor trends and
disparities and to assure progress toward eliminating system bias. Thank you very
much. [ APPLAUSE ]

Speaker: Commissioner Lewis
Questions from the panel? Thank you for coming.

Speaker: Panelist
Do you think there is something inherent in the very structure of the state DD systems,
program services that interferes with services to minority groups or the involvement of
minority groups, is there anything inherently problematic in the basic way it is

Speaker: Dr. Barbara Wheeler
Some people know this better than I do. But I think the complaints that we tend to hear
or concerns we hear from minority families who are frequently the ones that are
advocating for even their adult children. Is that they don't have enough choices. The
vendors that are assigned to them don't necessarily know their culture so they insist on
doing things a certain way. As a result, they would choose to not use services rather than
use the service from a vendor that they did not feel comfortable with. I know that is one
piece of it. I think the whole notion of individualized choice budgets and flexibility and
choice is a nice way to go that really benefits all families but also creates options that are
not currently available to minority families, at least in California. Their really actually
are probably other ideas but thank you for asking.

Speaker: Panelist

Speaker: Commissioner Lewis
Thank you. [ APPLAUSE ] We have Mrs. Lorie Regier and we have Mrs. Janis De Baca
on deck. Mrs. Regier? okay, Mrs. Janis De Baca and we will have Ms. Miranda Kennedy
on deck.

Speaker: Mrs. Janis De Baca
Good afternoon. I have to take my glasses off instead of putting them on so I can read .
My name is Janis De Baca. I am the mother of Michael De Baca who has developmental
disabilities. He just had his 40th birthday. I should not say that, but it is true. I am here
as a representative for the JFK Partners Advisory Council. JFK Partners is part of the
Colorado University Center of Excellence. I also have affiliation with a couple of other
organizations, the local health department and the Health-care Program for Children
with Special Needs and also the Colorado Respite Coalition.

The advisory council is comprised of self advocates, family members and community
members working in the disability field. JFK Partners pulls at the heart of their value
system families and people with disabilities and part of the reason that they have the

                   Denver Listening Session Transcript (Rough Edits)                       49
                                  December 6, 2010
advisory Council is to help them with planning and completing and evaluating various

One of the activities that took place or started actually, approximately a year ago, was
that they kept hearing there was a lot of problems around individualized planning. With
the assistance of the advisory council, the call was put out and there was a very broad
invitation by e-mail, by phone, by letter, by word of mouth to people in the community
who have disabilities to participate in a survey around individualized plans. The
community at large identified this as an issue, but when it came to getting participation,
it was very difficult. We actually only had 26 participants. However, we recognize that
this is a very small sampling, but we do feel like there are some trends that we were able
to take a look at. Two of these participants were Spanish-speaking and two were adults
with developmental or some type of disability and the balance were families who had
children between the ages of 3 and 13-years-old. The participants were asked to talk
about the breath of individualized plans that they had been involved with. The majority
of plans discussed were individualized education plans and family support plans, but
they also included plans from community center boards and any type of service or
support plans.

The survey was conducted by phone and it was well received by participants and the
questions ranged from who did the advance, behind the scenes, development of the
plans and who did the actual coordination and follow through of the plans, to how
frequently the plans duplicated information and whether there was a conflict between
the plans. I will not really go into any of the figures at this point, but basically the overall
conclusions were that families need a better coordination of their plans and particularly
when there's more than one planning process, parents reported that there is redundancy
in their plans and that often considerations in one plan are not included and in another
plan, regarding their goals and strategies.

The solutions that we might suggest is that we hope that the ADD could lead the way
toward a more standardized, individualized planning process. I know this is a little bit
unusual. Most of the time we are looking for more individualized processes, but we do
feel like because there's so much repetition, that there could be more of a standard that
might even be helpful and could be a cost savings.

We also believe that there could be efforts to look at the quality of life and relationship
and the person as a whole. And looking at the plans from the education community or
the community center boards, that they might do well, to look at the friendship circles of
families and allies and the PATH process that has been successful, that really look at the
whole person. And look at the supports that are there within the community that really
deal with mental, emotional, and spiritual wellness. Thank you. [ APPLAUSE ]

Speaker: Commissioner Lewis

                    Denver Listening Session Transcript (Rough Edits)                        50
                                   December 6, 2010
Speaker: Panelist
Could you give a sense of how many plans people have at one time?

Speaker: Mrs. Janis De Baca
Any one given point in time? We did look at that. Generally it was two. That was about
the average. It really varies from person to person.

Speaker: Panelist
The two would typically be the plans associated with services during the day for adults
or students of school-age?

Speaker: Mrs. Janis De Baca

Speaker: Panelist
And then the other plan for community supports?

Speaker: Mrs. Janis De Baca

Speaker: Panelist
I guess I'm wondering, what do you think or what did you find was the obstacles to
having any consistency across those plans?

Speaker: Mrs. Janis De Baca
The silos. It's that everybody is in their own world and not talking to each other. Because
there is so much that isn't on common and then yet none of them are not really looking
at the other parts of the puzzle.

Speaker: Panelist
And people found the plans to sometimes be contradictory to each other?

Speaker: Mrs. Janis De Baca
I think the plans did not seem to be broad enough. Especially, there is that separation
between any type of medical plan and the educational plan or the day-to-day plan.
Again, it is the silo issue.

Speaker: Panelist
I think the issues are most evident in the planning documents, but would it be fair to say
that the larger problem is that the systems are not talking to either the person, the
family or each other.

Speaker: Mrs. Janis De Baca
Yes, I agree.

                   Denver Listening Session Transcript (Rough Edits)                      51
                                  December 6, 2010
Speaker: Commissioner Lewis
Thank you very much. [ APPLAUSE ] Can we have Ms. Miranda Kennedy and then we
have Mrs. Sandra Root-Elledge on deck.

Speaker: Ms. Miranda Kennedy
Hello, everyone and thank you for this opportunity. My name is Miranda Kennedy and I
am with the National Disability Institute. Our mission is to promote economic, income
preservation and asset development for persons with disabilities.

My testimony compliments the testimony offered by my colleague, Michael Morris, that
was provided at the Philadelphia listening session, where he touched on the high level of
poverty that is experienced by people with disabilities. I want to focus my comments on
solutions to that issue. The design and continued testing and refinement of pathways
out of poverty to advance economic self sufficiency is not a required area for attention
for the Developmental Disability Councils, University Centers for Excellence or
Advocacy Systems. However, the strategic plan development offers ADD and the federal
government a unique platform to build new types of collaboration across agencies and
with state and local government and the private sector.

There are beginning conversations at the federal level that present a new reality of
opportunities with financial institutions and work support programs to move forward in
economic empowerment agenda. Access and use of favorable tax provisions like the
earned income tax credit, rating and increase use of social security work incentives with
individual development accounts and financial education and improved affordable and
accessible financial services offers possibilities for people with developmental and/or
intellectual disabilities.

Advancing economic self-sufficiency is a key goal of the new ADD strategic plan is a
game changer. It casts aside status quo thinking and can transform the focus of the
typical ADD operating systems of the DD Councils, the University Centers of Excellence
and the P and A systems. It can also place ADD front and center in an accelerating
movement across the federal landscape to leverage a coordinated set of resources that
test intervention strategies, educate and train consumers, providers and families and
moves to a line policy with practice.

Across the federal government there should be an ambitious 10 year goal to reduce the
level of poverty of people with significant disabilities by 50%. States and communities
should be provided planning grants and then implementation funds to accomplish this
goal. Education and training, pilot demonstrations and policy research activities must
be coordinated across ADD authorities and with other federal agencies. These
collaborations can improve understanding of the relationship between the Olmstead
community, immigration mandate and economic empowerment strategies.

This is new ground for ADD and the opportunity is enormous. The stakes are high. For
people who want to say do I buy a condo, the dream of starting their own business and
be more productive outside of a workshop. For families who have expectations that their
child will go on to higher education. ADD can galvanize support and leverage new

                  Denver Listening Session Transcript (Rough Edits)                    52
                                 December 6, 2010
relationships at all levels of government and be the voice that redefines expectations and
builds pathways for future generations to have a better quality of life.

We at NDI are prepared to outline and detail next steps that transform policy and
practice. Thank you for your attention and I have 48 seconds left [ LAUGHTER ] [

Speaker: Panelist
My question relates to how to accomplish this goal of increasing economic self-
sufficiency across silos. It seems that one of the challenges, particularly with people with
development disabilities, some of this is in Social Security, some of this is in Medicaid,
and some of this is in voc rehab, how do we address that?

Speaker: Ms. Miranda Kennedy
I think that is part of getting involved in the conversations that are already happening
with other agencies and administrations that are on board and learning how to tailor
that to the needs of the developmental disability community and that starts happening
at a more local level. I think getting involved at those federal discussions is really key
and NDI has been involved in a lot of that. In terms of our testimony that we have
provided online, we have included some strategies for that as well that get into a lot of

Speaker: Panelist
I am going to scope down to the ground level. Individual people working, having some
assets, not taking advantage of past plans and all those kind of things, what, at the local
level, state level, what could the P and A, the UCEDD and the DD Council do to change

Speaker: Ms. Miranda Kennedy
It's interesting, my colleagues at NDI focuses much more on asset development than I
do. I work much more closely with the public workforce system. But I would have to say
that getting involved with the benefits planning and coordinating asset development
along with the benefits planning piece, that folks who are working should already be
involved with in order to make sure they are not jeopardizing the benefits and
incorporating, as part of that benefits planning discussion to keep these around assets
development. Economic empowerment is not a large part of the benefits planning, it
should be a conversation that goes hand-in-hand.

Speaker: Panelist
At Johnny's planning meeting, where it all happens, how can the network have an
impact on what happens operationally at the personal level?

Speaker: Ms. Miranda Kennedy
So you are talking about the team that gets together, individually and who do they
access and what do they get involved with. The very first key piece is making sure that,
that team gets involved. Around the country, we have, during the tax season, over 100
cities involved in the real economic impact tour and they provide vital sites and they do

                   Denver Listening Session Transcript (Rough Edits)                     53
                                  December 6, 2010
the tax planning and they talk about those pieces. One example is making sure that
everyone is accessing that resource, for instance.

Speaker: Panelist
What I am asking is since there are thousands of people in these state systems, case
managers and plans happen every day of the week, how could the network do that, what
could the DD council, the UCEDD or the P and A do to affect practices at the ground
level every day?

Speaker: Ms. Miranda Kennedy
I think that is an excellent questions, and I think that it is a little bit beyond my scope of
being able to address today, to be honest with you. I think getting involved in the top-
level discussion and then finding out how it does need to be tailored and how ADD can
get involved and make that ground-level policy happen, that needs to be happening first
of all and then you can tailor your needs to the immediate local level. It depends on
which state.

Speaker: Panelist
Having been involved in projects across multiple different states, there is different
things available in different states. You have a Medicaid infrastructure grant, you have a
Medicaid buy-in program, you have certain different things that might have elements of
it that could provide local level supports and mapping. Mapping those resources and
tapping into those and making sure you are connecting those resources.

Speaker: Ms. Miranda Kennedy
One example would be in New York State. We have a no wrong door approach that they
are focusing on and integrating database system across six different state agencies. It is
pretty cool. We are doing that next year and we are rolling out that database system that
everyone is going to start accessing. As part of that, they are going to have referrals to
like a work incentive information network. They will have access to different United
Ways who are involved in that development and you would have names and contact
information for local level folks who could become part of that team or provide
resources to that team that will be individualized to those individuals. Now I can provide
that example for New York, but it really depends on where you are in the country. But, I
think you could look to those as promising practices and then try to duplicate those in
other areas. Am I anywhere near answering your question? I think Nancy has covered
most of the questions that I have.

Speaker: Panelist
But, do you think that people with development disabilities are a group among those
with disabilities generally who require particular affirmative action with respect to this
particular issue of asset development? In terms of additional support and planning for
making that happen? You could take it any direction that you would like. Not to tell you
what kind of answer.

                    Denver Listening Session Transcript (Rough Edits)                       54
                                   December 6, 2010
Speaker: Ms. Miranda Kennedy
Well, I don't think that they should be excluded from it at all. I am saying affirmative
action. If someone is intact intellectually, do they not have more capacity to generate
assets to develop, than a person who has a developmental disability and who is most
likely to be intellectually impaired therefore, are there not a special group of initiatives,
some initiatives that you would have to propose to do in the developmental disabilities
space. It would be different from that in regard to working with people who are visually
impaired, or use wheelchairs, or are intact intellectually. I am just thinking, you have
thought through something really wonderful, but I'm also thinking have you thought
through all the implications of the particular population with development disabilities.

Speaker: Panelist
How would you propose to go about beginning to think through those particular

Speaker: Ms. Miranda Kennedy
I would propose having the Administration on Developmental Disabilities become
involved in that discussion to start addressing those policies to practice concerns,
because you all are aware of that. I don't think we could make those decisions without
giving you the input from the community, from the leadership, to figure out is that
appropriate and do things need to take place. If so, how does that happen and if not, I
think that is a good answer, but I think that some of your leaders who are from
developmental disabilities backgrounds, so I am just wondering. I wish I could respond
to that. I'm sorry, I don't feel that I can at this moment.

Speaker: Panelist
I thank you.

Speaker: Panelist
How can ADD and Social Security and other agencies create not just a pathway out of
poverty but actually move into the middle class as a reliable goal and what are some of
the steps that ADD and Social Security could take together to create those pathways
what are some first steps?

Speaker: Ms. Miranda Kennedy
Making sure that it is on the agenda of the DD Councils and protection and advocacy
systems and the University centers of excellence. Raising it to the level of awareness is
the very first step and providing education about what is happening around the country
for other populations and how all across collaboration happening in multiple
organizations and agencies. Becoming aware of the amazing possibilities and some of
the impressive outcomes happening. Even accessing the different tax payback that
people are getting. I think will blow your mind. I think it is to become aware of what is
happening and try to figure out how do we make that happen for people with
development disabilities and why isn't it?

                    Denver Listening Session Transcript (Rough Edits)                      55
                                   December 6, 2010
Speaker: Commissioner Lewis
Thank you very much. [ APPLAUSE ] We have Mrs. Sandra Root-Elledge and Mrs.
Mary Lawson on deck.

Speaker: Mrs. Sandra Root-Elledge
Good afternoon. My name is Sandra Root-Elledge, I am the associate director of the
Wyoming Institute for disabilities, Wyoming's UCEDD and I am also the parent of two
transition age young adults with developmental disabilities. Today I am addressing you
on behalf of UCEDD and have comments and input from our stakeholders and staff. It is
generally agreed that tremendous progress had been made over the past several decades
in providing community-based supports, education and services. Yet there is progress,
but still a lot of work to be done.

To address the future needs. The future needs that were identified by our stakeholders
and staff include more trained caregivers, education and support for family caregivers,
affordable housing options, transportation, increased access to assistive technology,
improved supports and services, a funding model that allows for real choice, elimination
of the division between special and general education and coordinated services with
wraparound systems of care and system navigators.

For suggestions to meet these needs, I offer five improved ways of doing business, as
opposed to concrete suggestions. That will help coordinate systems and improve
outcomes for families. First, align the DD Act programs developmental funding to state
needs. What Wyoming might need is far different from what California or Rhode Island
may need. I'm not referring to population -based, but state infrastructure needs.

Number two, the DD Act network is strong and in a position to meet future needs. ADD
can strengthen it by the facilitating a fourth partner in each state. The state agency is
responsible for providing services. This would bring the evidence -based perspective to
that important entity. ADD should require collaboration among all DD Act partners with
common statewide goals. And fund projects of national significance that allow state DD
networks to collaboratively identifies future support and service needs. Strategically
meet those needs, evaluate pilot programs and implement change to meet future needs
and be successful.

Number three, identify and disseminate information about good community planning
models. The Think College Coordinating Center is an excellent example that could be
replicated for new initiatives. Determine goals and invest in research-based projects,
share that information and those successes with state DD networks. Provide funding for
collaborative state planning and pilot studies. And then implement based on the
successful outcomes. In Wyoming, the information available on this initiative allowed us
to make progress before even applying for strategic funding.

Number four, collaboration and transparency, ADD should collaborate with other
federal departments, modeled that at the national level, facilitate the implementation of
that at state level, transparency and collaboration should be integrated at all levels from
pre-service education to implementation, to administration and to each state cabinet. At

                   Denver Listening Session Transcript (Rough Edits)                    56
                                  December 6, 2010
the individual and family level, every student, client or patient should have the choice
for a collaborative , transparent and visionary team to meet his or her needs.

Finally, five. Help communities further develop natural supports. Communities have a
wealth of potential people to provide natural supports and family support to meet a
number of needs. These need to be provided with research-based training and ongoing
community support.

In summary, by improving state infrastructures, strengthening the DD network and
addressing new developmental and collaborative strategic planning and evaluation, we
can work together to identify and meet future service and support needs.

Thank you. [ APPLAUSE ]

Speaker: Panelist
My question, I hope would be able to interest you because of the age of your children, is
about transition. I am wondering if you could speak to both from your UCEDD
experience and a larger sense, of how you feel the DD system should be interacting with
school systems and the role that the DD system can play in regards to encouraging the
public school system and taking a more active role around connecting to the broader
adult service provision and infrastructure?

Speaker: Mrs. Sandra Root-Elledge
I believe the DD network could help set high expectations. Without those high
expectations, we all know that our youth and our children are not achieving
educationally or in the employment, or community living settings, I think if the ADD
could set these high expectations, work collaboratively with the departments and
divisions and have those dialogs and maintain progress towards successful outcomes.

Speaker: Panelist
I have a quick follow-up. You probably know better than anybody, the UCEDDs and DD
systems have very limited resources, the public school systems, are huge. In light of that,
what do you think is the best specific and practical mechanism for pursuing the kind of
engagement that would set those high expectations?

Speaker: Mrs. Sandra Root-Elledge
Research-based dialogs. If we have findings that talk about best practices and what are
the most successful for the highest level of outcomes. Also, I direct the state AT program
and assistive technology plays a major role in this. And ADD being a proponent for the
renewal of the act and continued funding for that as well. That is going to be key as we
know. It can level the playing field and it has a potential for much more success. You
don't have to answer this question if you don't want to.

Speaker: Panelist
What role do you see Wyoming State training school play in Wyoming over the course
over the next five to 10 years?

                   Denver Listening Session Transcript (Rough Edits)                       57
                                  December 6, 2010

Speaker: Mrs. Sandra Root-Elledge
I think the Wyoming State training school in its evolution is providing outreach services.
I think it has a role in doing that. In Wyoming, we have such limited services, so
practitioners such as, dentists, psychologists with specified training and in meeting the
needs of the DD population. The training school could have a role in doing that. It is
centrally located in the state. Which is difficult in itself, it's kind of a large state. I think
it could continue to play. It could also play a role in training and in identifying
excellence in training in those practices. That is a politically charged question

Speaker: Panelist
Could you elaborate a bit more about the benefits of what you see is good outcomes from
ADD facilitating the fourth partners?

Speaker: Mrs. Sandra Root-Elledge
The collaboration and transparency?

Speaker: Panelist

Speaker: Mrs. Sandra Root-Elledge
Oh, the fourth partner. I'm sorry. The department responsible for providing services. If
those departments are aware of best practices and research-based practices and then
aligned with the other three partners, that is going to be a unified approach. I am not
saying it will not have roadblocks, but a unified approach, families will then, there will
not be a wrong door, it would be a natural outcome. It's not a matter of saying there is a
wrong door, but all agencies will be working together and they can model it for the
organizations and agencies within each state. Talk more about what you mean about
making state DD agencies a fourth partner in state partnerships that already exist. Yet I
think rightly the Act creates some distance between the DD network and the state
service systems.

Speaker: Panelist
How would that might be affected by your proposal?

Speaker: Mrs. Sandra Root-Elledge
I would propose that the state agency in charge of services is part of the DD network for
planning, collaboration, identifying state goals that meet state needs and then working
towards that goal. That would not necessarily make them or eliminate all autonomy.
They will still would be responsible for providing those services as what UCEDD is
responsible and the consul and P and As. They will still have their individual goals. But
to work together toward some identified state goals that could change infrastructure and
improve successes.

                    Denver Listening Session Transcript (Rough Edits)                         58
                                   December 6, 2010
Speaker: Commissioner Lewis
Thank you very much. [ APPLAUSE ] Ms. Mary Lawson. And if we could please have
Mrs. Mrs. Val Saiz on deck.

Speaker: Ms. Mary Lawson
Good afternoon. I heard a lot of good information here today. Commissioner Lewis and
the staff, thank you for this opportunity to participate. I am Mary Lawson, I am an
agency administrator for PAKS developmental services. In a small community in
western Nebraska. I serve as the state contact for the Nebraska direct support
professionals network. A recognized chapter of the national alliance of direct support

This fall, at the state of Nebraska people first conference, while presenting the code of
ethics for direct support professional, I was asked by a member of the audience, a
person who receives support, what to do with those staff that abuse us. I could not
answer her. I stumbled for words. I did not want to discount the seriousness of her
situation, but I could offer her no solution. The immediate option, no support. There is
no one waiting in the wings to come to work as a direct support professional. With the
national turnover rate, upwards of 70%, the good news is we have arrived. At that crisis
situation that was forecasted decades ago. It is time for action. People are waiting.
People are wasting their lives are starting over every time that direct support
professional turns over. We can continue to talk about what we might do. We must
move now with a sense of urgency to put in force a plan so that no one requesting
supported is waiting and no one is living in fear of the next abuser.

I propose that the administration ensure that the UCEDDs implement a recruitment
campaign attracting people who have a healthy sense of their own worth and potential,
while recognizing the gifts, talents and purpose of the people they are hired to support.
So that each person can reach their dream. I ask the administration to ensure that the
UCEDDs engage in activities in professional development, personal growth and
celebration of the direct support professional workforce and truly embrace training that
is competency-based and tied to career ladders.

Lastly, we must ensure that the independent thinking and judgment demanded of all
direct support professionals is guided by a code of ethics. The largest determining factor
for the quality of peoples' lives are those persons providing that direct support. If the
direct support professionals are largely invisible. This has become a social justice and
civil rights issue. In looking toward the future, I urge the administration to partner with
the national and state direct support professional networks in taking these initiatives to
their next level. Again, Commissioner, thank you for this opportunity to share my
thoughts. [ APPLAUSE ]

Speaker: Panelist
How do you see the growing use of self-direction and individualized budget's impacting
the direct support professional field?

                   Denver Listening Session Transcript (Rough Edits)                     59
                                  December 6, 2010
Speaker: Ms. Mary Lawson
At this point, I can see two sides to the coin. No matter how it is provided, the supports,
the services, it still needs to be done with ethics and training and competency. We, as an
agency, should expect nothing less for the people we serve as opposed to the individual
expecting something different the person that they hire. It all needs to be done
professionally and ethically whether it is through an agency or private.

Speaker: Panelist
Thank you very much.

Speaker: Panelist
Kathy is saying, finding and keeping support staff is very difficult. You suggested that
staff should have a level of training and appreciation, but how do you propose to pay
staff at a level that allows them to survive on the wages that they have and be paid
equivalent with the training that we know they should have?

Speaker: Ms. Mary Lawson
I believe we spend a lot of money on the opposite end. If it cost us $4700 every time a
staff turns over, let's take that $4700 and figure out how to keep them and put it in the
other end. I truly feel there is a lot of dollars out there that are going to the wrong side.
Most of the staff in the direct support profession are women, single mothers, they live
with other benefits through the government. So all that money could be focused in
another direction for the training and the wages.

Speaker: Panelist
One final question.

Speaker: Commissioner Lewis
Make it quick. We are running way behind now.

Speaker: Panelist
Your testimony related to the tremendous importance of individuals, individual
professional support staff to work with people with developmental disabilities. Do you
see any future for the role of technology to support people with developmental
disabilities in residential care just as the access to education was the burgeoning right of
the 70s, 80s, and the 90s and now we are in the 2000s. Is the access to technology
becoming equivalent to the access to education and a you see the role for technology
augmenting direct support staff in meeting some of the needs for residential support?

Speaker: Ms. Mary Lawson
Yes. I don't think it can work any other way. With the growing need for that direct
support professional, there are fewer and fewer people to choose from. We are going to
need our direct support staff to be the utmost quality and they are going to have have to
have the technology to get their jobs done.

                    Denver Listening Session Transcript (Rough Edits)                       60
                                   December 6, 2010
Speaker: Commissioner Lewis
Thank you very much. [ APPLAUSE ] We have Mrs. Val Saiz and Mrs. Harriet Austin
on deck.

Speaker: Mrs. Valerie Saiz
Hello, all. Thank you for having us all here to talk about these important issues. I am a
social worker for Denver health care program for children of special needs. I do that
very part-time. I am also a co- facilitator for the Colorado respite coalition. I am also a
mom. I have three kids. One has autism and a variety of other disabilities. He is
nonverbal and has lots of behavioral issues that keep us running. If anybody knows
Graham, he would be racing through the room and causing complete chaos. For that
reason it led me to need respite. That is my topic.

When I think about respite, I think about me needing respite, but being a social worker,
I have to put myself in other people's places. And I know that Graham needs respite.
And I know my two kids need respite. I know that his teachers need respite. I know that
the clerks at the grocery store need respite. [ LAUGHTER ] Every time we come, they
take a break. So it is chaos. I think we missed the boat when we don't fund respite. I
think that respite is a key to a lot of the problems and situations that we are facing. I
think it is a gap filler. If there is gaps in social stuff, if there's gap in employment, if there
is gaps in education, respite can fill the gaps. We can tag team with the education system
to do before and afterschool programs for kids with special needs. That is not being
done. I would never think of bringing Graham to an afterschool program. They would
fire him on the spot.

To me, there is just one reason that the Colorado respite coalition exists is that we
started four years ago. We wanted a respite center. When we tried to come up with ways
to get the money and we said well, this will never happen. We need a multimillionaire to
fund an agency that would do what we want to do. Instead, we decided to form a
coalition of professionals, advocates, parents, anybody that wants to join us to really
create a road that is not so bumpy in Colorado for more respite options. One of those
options might be a center in the future. We would like to work with some university to
create that. In the meantime, I think we just want to make it so that Colorado has
options. Right now, we are poorly funded. If at all. The people on waivers do get some
respite. We happen to be on a waiver so I get some respite. I know that one of the keys to
that respite is being consistent. It has to be reliable. It has to be creative. It has to be
affordable or no one can use it.

When I get calls from parents that are crying and saying I am so glad I came across your
name and when can I get some help? When can I get a break? All I can say, we really just
exist to keep track of how many people call us so we can know that there is a gap out
there. But we would really like to do is to provide services, provide funding to those
individuals that need the respite and eventually get something very systematic like a
center-based program where training can occur for everyone. It is a win-win situation.
Everyone wins. The parents, by the way, I didn't mention, it is life span. We are looking
at this as a lifespan type opportunity. We just attended a conference in Baltimore,
there's a lot of intergenerational type respite programs going on across the nation. Other

                    Denver Listening Session Transcript (Rough Edits)                          61
                                   December 6, 2010
states are much better funded than us. It's sort of a theme in this conference, it is the
consistency. We need your help to provide some consistency to some reliable funding.
Thank you. [ APPLAUSE ]

Speaker: Panelist
I am not sure I understood what you meant by a center.

Speaker: Mrs. Valerie Saiz
Well, it is a vision for having a real building. That could then be replicated throughout
the state. But it would be a place where people can go who have special needs. It would
be available 24/seven. Eventually it would include emergency respite as well as planned
respite. If you are going to go on a vacation, right now, if we go on a vacation, we only go
every two years because it takes so much planning to get arrangements made. And
financial planning. It would be a place where you could affordably say, here is Graham,
we are going to be back in a week. He's got some activities, planning, people there that
know his needs and can also provide, he is happy there, taken care of.

Thank you so much. [ APPLAUSE ]

Speaker: Commissioner Lewis
Thank you. We have Ms. Harriet Austin and we have Ms. Claire Verbinski on deck.

Speaker: Ms. Harriet Austin
Hi, I am Harriet Austin, I am here as the parent of a 19 -year-old with high functioning
autism, Bipolar disorder and type one diabetes. I also have affiliation with JFK partners
at the University of Colorado and their LEND program and Children's Hospital Denver.

I would like to speak today on behalf of families with individuals like my son who is
significantly impacted by autism, but who is not eligible for DD services because he does
not have an intellectual disability. In the state of Colorado, those services are tied to IQ
at this point in time. But We need community services for this population. The number
of individuals identified with autism is increasing at an alarming rate. The CDC reports
a 57% increase in diagnoses between 2002 and 2006. More people with autism than
ever before are in need of supports and services, but for those without an intellectual
disability, there really are no services.

I am concerned because my son is in transition at the age of 19 and we see ourselves
falling off a cliff in about a year. What happens to these individuals in adulthood? We
know they are at risk for becoming isolated for suffering from depression and anxiety
and a significant number have more severe psychiatric disorders. They are at risk of
being unemployed or underemployed, at least for periods of time. And for having
nowhere to go and nothing meaningful to do. Most live at home and their families
struggle to help them, as we do currently.

At the recent AUCD conference, there was a presentation about research on what
happens to young adults with autism. In the presentation, almost 25% of those without
an intellectual disabilities were without any type of post-transition activity. Employment

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                                  December 6, 2010
or otherwise. They did not have access to day programs. They were sitting at home. 40%
were attending college classes. That was delayed and it was unclear what would happen
to those individuals afterwards.

Employment rates for adults in this group has been estimated at around 15%. It is
expected that this population will continue to grow. What do we do? Individuals with
autism and other developmental disabilities who are underserved, like this group, still
need a sense of community and a sense of purpose even when they do not have
employment or are between employment.

I would like to propose that the ADD, the disability community itself look at the mental
health community's clubhouse model. It is a pretty phenomenal model. Clubhouses are
programs of support for people with a mental illness, where the participants are
members rather than clients. Where the focus is in each member's strength rather than
diagnosis. They are equal partners with paid staff and volunteers. They work hand-in-
hand to make this program succeed. The programs offer recreation, friendship, help
with employment, there is work to be done as volunteers at the club houses. There are
over 325 clubhouses in 28 countries all over the world. They are certified through an
international center for clubhouse development that is online at The
ICCD provides extensive training and resources for those interested in starting a
clubhouse in their state or community. The model has been very successful in Colorado,
in Boulder, there is a Chinook clubhouse. That is an excellent model to look at. That it
what I would propose. I know I am out of time.

Speaker: Panelist
I really appreciate you bringing up this issue. I am wondering if you could speak,
particularly because you brought up the mental system, to the extent to which there is
currently or where there might be some opportunities for greater collaboration between
the mental health and the developmental disability system.

Speaker: Ms. Harriet Austin
There is very little collaboration at the moment. And there needs to be. I don't know
what the solution is to make that happen. The other incredibly underserved population
are individuals with developmental disability and psychiatric disorder. I debated
between this topic and crisis intervention because they are both areas of great need. But
I don't know, those folks need to talk to each other. Right now the DD community is not
serving people with mental illness, and the mental illness community is not serving
people with developmental disabilities and there needs to be some sort of collaboration
between them. Can you imagine having half of your employees will leave every year.

Speaker: Commissioner Lewis
Thank you. We have Ms. Claire Verbinski and then Ms. Stephanie Schoen.

Speaker: Ms. Clair Verbinski
My name is Claire Verbinski and I am a proud member of SEIU, Service Employees
International Union. I have been a direct service provider for about 20 years. For the

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                                  December 6, 2010
past 11 years I have been at I have been at East Bay Innovations, which is a nonprofit
based in -– California. We assist persons with developmental disabilities to live
independent lives.

I’ve been working with Laura Long, who is here in the front row, the lovely woman in
black with the Echo communication device, for 10 years. This length of service is very
unusual in my field. Until the economic recession, the turnover rate at our agency was
approximately 50% and it is now around 30%. We need to find a way to uplift the direct
support workforce in order to reduce the high turnover rate of direct support

Over the last decade, California, like other states, has developed services that support
people with developmental disabilities in their own homes and communities in ways
that seek to promote their self determination and inclusion in community life. De-
institutionalization, however, has resulted in the erosion of wages and benefits for the
direct support workers, leading to very high vacancy and turnover rates and
undermining the quality and availability of services. Furthermore, the shift from
institutions to community settings is not merely a change in venue of work, it is a
change in job description for direct support workers that entails more responsibility and
independence from supervisory staff.

Increased responsibility and new skills require investment in training and ongoing
learning for direct support workers. But in California there is little investment in
training. Apart from the minimal first aid and CPR training there are no training
requirements for direct support workers in independent and supported living services,
supported employment, or respite care. Mandated training, and most importantly,
wages that reward workers for that training, as well as career and educational ladder
opportunities are critically important to stabilize the workforce and increase the quality
of care that people with developmental disabilities receive.

Thanks to a groundbreaking $75,000 grant from the Alameda County Workforce
Investment Board, career advancement training is being provided to 30 employees at
our agency. It’s a 70 hour training program that uses the online curriculum from the
College of Direct Support, which is accredited by the National Alliance for Direct
Support Professionals. After their training is completed, these employees immediately
receive a dollar an hour raise as well as a strong possibility for promotion into open
positions. Never before has any of California’s 49 workforce investment wards funded
an incumbent worker training program in the developmental disabilities field. If this
kind of innovative training, pay raise and career advancement opportunity were given to
all direct support professionals the turnover rate would surely be much less and people
like Laura Long could spend less time interviewing and training new staff and more time
living a full and inclusive life. Thank you [Applause].

Speaker: Panelist
As a union support worker, do you agree with the concept that the person receiving the
services should hire and fire their own staff?

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                                  December 6, 2010
Speaker: Ms. Clair Verbinski
Completely agree with that. That is how it works at the agency that I am with.

Speaker: Panelist
Thank you very much. [ APPLAUSE ]

Speaker: Panelist
Does SEIU also have a stand on that matter, what is it?

Speaker: Ms. Clair Verbinski
That is a very good question. I cannot speak for the SEIU. I am just a member. I know
they would agree with the increase of wages for direct support workers.

Speaker: Commissioner Lewis
Thank you. [ APPLAUSE ] We have Ms. Stephanie Schoen and then Ms. Laura Long is
up on deck.

Speaker: Ms. Stephanie Schoen
Good afternoon. Thank you for hearing my testimony today. I thank the ADD staff. I am
Stephanie Schoen from Reno, Nevada. I am a member of the Nevada DD Council, a
graduate of Partners in Policymaking, an occupational therapist, and the proud mother
of a 23 -year-old who has multiple challenges and this is her picture. Let's just say that I
am not just her mother, I am her PCA, I am her nurse, I am her therapist and at times, I
am her friend, her sole human resources manager, we have a team of four at the house
right now. And I am tired. That is not what I am here to talk about.

What is the work we do if it is not a social justice effort? Yet we tend to work alone. In
my experience, people with various disabilities sit on boards and attend multiple
conferences and seminars. In Nevada, the councils we participate in are very disability
centric. We self isolate working in a bubble, hoping to bring attention to our concern by
focusing only on disability. I can only extrapolate that this happens everywhere not just
in Nevada. In every state and nationally, I believe that the ADD should be aligning with
existing social justice efforts that are not disability centric. The types that strives for a
world where everyone has the opportunity to live a life of dignity, who take a difficult
but positive stand on the issues represented by all of their membership where fight is a
four letter word in that it sets up an adversarial tone and we cannot afford to be

By joining up with these other non-disability centered groups we are acting inclusively,
not separately. In other words, we are walking the walk not just talking the talk. We are
including ourselves proactively versus waiting to be noticed. It places us beneath that
larger umbrella of social justice under which our reach is expanded and our issues are
exposed to greater number of people who may or may not be aware of the DD
community and our issues. Regarding the word fight, I hear it often and I've actually
heard it in this room today, we must fight for our rights or I'm fighting the county, the
state, the school district et cetera. The minute that I even think that word I have
established the mindset of me versus them. It is very transparent, it goes with me

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                                  December 6, 2010
everywhere when I have that mindset and just as person first language shape how we
perceive people with disabilities, our internal rhetoric of what we say to ourselves
shapes how we how we are perceived by others and therefore how we come across with
our message.

If you shout, no one listens. Ask any good teacher and they will tell you that. Speak
clearly and speak respectfully and you get everyone's attention. But who wants to work
with an adversary anyway? As we build our relationships, we emerge with a win-win
solutions. This is what we should be teaching in our advocacy training. This is what
successful social justice for people with developmental disabilities should look like.
Taking opportunities to teach, expose, explain and otherwise herald our cause by
showing not just telling and setting a tone of respect and making it comfortable for
others and sharing our concerns and our love lives. I will also briefly reiterate the cross
state parity. I would love to move to Oregon for family reasons, but we always start short
because services are so minimal there. I reiterate comments made by prior speakers
with ADD focusing on this dilemma.

I would also like to talk very briefly about professional alignments. It was clear at this
last year's DD Nurses Association that I attended, and that medical professionals are
dismayed at not being included as part of the team anymore. They are pushed to the
side. I believe that the administration on ADD should be looking at ways to blend a
different models of support and include the medical model as an essential part of the
team so that health professionals, let me start that part over again. I know it is the red
light. What can I say [ LAUGHTER ] ADD should be looking at ways to blend different
models of support and include the medical model as an essential part of the team so that
health and wellness issues can and do affect quality of life and are not inadvertently
overlooked in this vulnerable population. I am going to leave it at that. You have my
summary [ LAUGHTER ]

Thank you very much [ APPLAUSE ]

Speaker: Panelist
You talked about getting people with disabilities and their allies involved with other
social justice organizations, how can we get the broader social justice movement be
more interested in and involved with people with disabilities.

Speaker: Ms. Stephanie Schoen
I am so glad you asked that question. Can I tell you a story? This year in Nevada, there
was the first ever social Justice Institute in which the word went out statewide and they
have very limited budget and three months of planning. I personally e-mailed at least 50
people that I know who work in DD and disability services and are sitting on councils
and boards, including our entire DD council. Out of 100 people who showed up, that is a
pretty good number especially on short notice. I was the only person in the entire room
representing any disability of any kind. It broke my heart. The reason I know that I was
the only person is because my husband was the ringleader and he was the one who told
me, you are it. How can we get other people interested in having us there, you just show
up. They want you there. We want bigger numbers, too. We want bigger numbers. We

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                                  December 6, 2010
want a bigger voice. I think it is actually something that we don't have to wait to be. I
think we need to show up at the door and say we are here and we have something to add
and we have some value. Does that answer the question?

Speaker: Panelist
It answers it. I guess the one thing I would say briefly because I know we are short on
time. I feel like sometimes people with disabilities go to some of these broader groups to
talk about our issues and we are met with the kind of response that says, well, disability
is not a real social justice issue, it is a medical issue, or so on, and I hope that the social
justice community is as welcoming everywhere as you described it in Nevada. I think a
lot of people have had different experiences.

Speaker: Ms. Stephanie Schoen
I think you are right. I think the way we go about that is to take those opportunities to
educate the social justice groups as to why our issues are truly a social justice issue.
Everything I've heard so far from poverty to coordinated planning to self-determination
are all social justice issues. And we have more common ground. If we can explain our
common ground and help them see it, then they will be more willing to have us at the

Speaker: Commissioner Lewis
Thank you. [ APPLAUSE ] Okay. The end is near. We see the energy fading in the room.
We have one more wonderful speaker yet to join us. Ms. Laura Long and then we will do
some quick closing remarks and get everyone out of here. Thank you.

Speaker: Ms. Laura Long
Hi, my name is Laura Long. We are from Northern, California. We are representatives
from the supportive living agency. I live independently in an apartment with around the
clock support, for 16 years. I have seen attendants who come and go because pay so low.
East Bay started the program for attendants which Claire is going to tell you about it. It
takes a new attendant about a week to feel as comfortable with everything about me.
Michel Rotor does the first interview with the person. If Chris likes her interview with
the person, it is time to meet me. I trust Chris's judgment to bring the new person to me.

Thank you. Thank you very much. [ APPLAUS E ]

Speaker: Panelist
Just one question. What makes, what is the essential ingredient of someone being really
helpful to you?

Speaker: Laura Long’s Sister
She did type out the word happy. So people who are happy are helpful?

I am Laura's sister. Laura looks up to say yes. That is the quickest way to communicate
is yes-no question. And Laura did spell out happy. Having one of your attendants to be
happy is really helpful. If you had any other yes-no questions, that would be kind of a

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                                   December 6, 2010
quicker to answer for this forum.

Speaker: Panelist
That is an unexpected and very valuable answer. Thank you. [ APPLAUSE ]

Commissioner’s Closing Remarks

Speaker: Commissioner Lewis
So you made it. You survived an entire day of testimony. I can see the energy in the
room slowly dissipating. Do we need to get to get up and do some jumping jacks so I can
keep your attention for a minute? First of all, First of all, I want to start up with some
thank you’s. To the EST staff who are logistics folks, who made sure that we had a good
room to sit in and we have equipment that our was space accessible and help us with the
CART. Wanda is there in the back of the room and there are many other EST elves who
helped us along the way. If we can have a round of applause for the EST staff. [
APPLAUSE ] The ADD staff who are here with us today, Ophelia, Melvenia, Rita, Suad,
Jamie, and Syad, if you could stand up or wave. I will get you, just a minute [
LAUGHTER ] and the big elf, Kate Fialkowski, who has been -- done an unbelievable job
as our coordinator throughout the Summit process . No, I would not forget you. A round
of applause to both of our panels, both our afternoon panel and the panel from this
morning. Thank all of you for engaging with everyone. And really drawing out some
more information from our speakers. To all of you who listened all day, thank you for
staying with us, for being attentive, to hearing all the wonderful stories and ideas that
have been presented today. And most importantly, for those of you who are left in the
room who spoke today, thank you for coming up here and sharing your insights with us.
So if we could have one more round of applause. [ APPLAUSE ]

It is really interesting to me the differences in the different sessions. Now that we have
done this five times over, that are consistent themes and problems that come up. Some
of them are themes and problems that existed long before my daughter was born in
some of them existed long before I was born and some of you have been working on
these problems for just about that long based on what Bob is telling me. I know that we
have these problems over the ages and we continue to struggle with silos and systems
coordination and attitudes and cultural barriers and access across multiple systems.
Continue to see a need for leadership both with leaders with the institutional knowledge
so we are not reinventing old, bad ideas, but also the development of new leaders and
making sure the next generation is there to move us into the future. It is exciting to hear
some of the new ideas and to hear from some other younger self advocates and younger
families to hear about some projects like project search and employment opportunities.
To really think about economic self-sufficiency when not very long ago we were worried
about survival. On many days, we are still worried about survival. But as we move
forward, the fact that we are talking about postsecondary education and that we are
talking about saving, and we're talking about people owning their own homes, is
exciting. It is important to remember how far we have come in such a short period of
time. The DD Act has only been around 50 years. It is amazing to me on how different
my life and my daughter's life would have been should she have been born five decades

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                                  December 6, 2010
earlier. I think that while there are still these epic and difficult problems that we need to
move forward on, the future is very exciting and it is great to see some of the energy in
the room moving on those new ideas.

One more logistics thing, next steps, always the question at this point is what do you do
with all this stuff, where does it go, what happens now? We will be taking all the
information that was presented today, a team of folks will be summarizing it and
working on it tonight. And then we have many of you still with us who are participating
with us tomorrow as stakeholders who have patiently sat here and listened instead of
speaking when many of you I know have many many things to say as well. And
prioritizing based on what we heard today as well as some of the other input that we
have received. We are doing this five times over as I mentioned. This is the last time
through. Out of those two-today's sessions ADD is gathering a set of priorities
consistently across the country around a range of issues. We will then take those
priorities and we are processing them and building a set of goals and priorities that a
group of national stakeholders will be working on in late January and early February to
begin to build a framework for the ADD strategic plan. Our hope is to have the draft of
the strategic plan available in the spring for review publicly before we put the final
version out. So you will have one more bite at the apple in the spring. We also continue
to collect information online and incorporate those ideas throughout the process.

Additionally, everything we have been doing, we worked very hard work to make this a
very collaborative and transparent process. All the information and transcript from
today, the testimonies that have been provided as well as the information provided to us
is all available online. You can take a look at others' ideas and learn from that. ADD in
this strategic planning process as I remarked on this morning, has a fundamental
framework to work against. Which is the best DD act and the ADA. With those as our
guide and framework and with your help and ideas, we will be able to build a better
future for people with intellectual and developmental disabilities.

As we close out today, I leave you with one more relevant quote from 10 years ago,
Senator Harkin on the passage of the last DD Act reauthorization remarked, and I think
this is still relevant today. The toughest barriers are not architectural, they are
attitudinal. They are not in the environment, they are in our hearts and minds. When
people with disabilities are integrated throughout our communities, we are given the
opportunity to change attitudes from one based on stereotypes, fear and ignorance to
those based on acceptance and affection. We all gain when we have opportunities to
have people with developmental disabilities as our friends, our coworkers, and our
classmates. Thank you very much for spending the day with us.


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                                  December 6, 2010

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