Coalition Quarterly by O5XwpfV


									                         Coalition Quarterly

                          Fall 2006 Edition

                              Articles Include:

                    Tennessee Conference of Social Welfare
                        Bredesen and Bryson Speak Out
                        Children Caught in the Crossfire
                              IDEIA 2004 Review
              Legislator Awareness Day & MegaConference 2007

Cover Photo: The words “Go Vote” are written and signed in an effort to urge
readers to participate in the upcoming elections.

Inside Front Cover:

Headline: Making it Count: Election Day Tips

Before Election Day
      Examine a sample ballot which should be published in local newspapers
       and may be available online.
      Learn how the new voting machines work before you go to vote.
      Know where your polling place is located. This should be listed on your
       Voter Registration Card. For the Early Voting Period you should be able
       to vote anywhere in the county.
      Arrange in advance for transportation to the polls if needed. Many county
       political parties and other organizations provide Get-Outthe- Vote
       transportation on Election Day.
       Call your county election administrator or the state Division of Elections
        (615) 741-7956 if you have questions.

On Election Day
       Take your Voter Registration Card and personal identification. This is
        especially important if you registered to vote by mail or online.
       Remember that polls close at 7pm so get to the polling place early! As long
        as you are in line to vote by 7pm, you must be allowed to vote.
       If there are questions raised about your registration or your right to vote,
        then ask to complete a provisional ballot before you leave the polling
Problems on Election Day?
Contact the Disability Law and Advocacy Center’s Hotline if your polling place is
not accessible, does not have at least one new voting machine that is accessible,
or you encounter other problems voting. The number is 1-800-287-9636 (TTY:

List of Articles in Order Presented

        *InFormation – Common Threads
        *Children’s Corner – Meet Odell and Family Voices
        *Member Feature – Tennessee Conference of Social Welfare
        *Coalition Project – Newborn Hearing and Screening
        *Feature Story – Bredesen and Bryson Speak Out
        *Feature Story – Children Caught in the Crossfire
        *News & Issues – IDEIA 2004 Review
        *Looking Ahead – Legislator Awareness Day & MegaConference 2007
Coalition Quarterly Credits:
      Special thanks to the following contributors: Joyce Prusak, Paula Pereira,
Shelby Tabeling and holly lu conant rees. We also want to thank Maggie Sims of
the Rocky Mountain Disability & Business Technical Assistance Center for
providing sign language images used on the cover.
      Opinions expressed are not necessarily those of the Tennessee Disability
Coalition or its Members. The Coalition Quarterly is published four times a year
and may be reprinted with permission of the Tennessee Disability Coalition,
headquartered at 480 Craighead Street, Suite 200, Nashville, TN 37204.
Telephone (615) 383-9442, TTY (615) 292-7790. Visit us on the web at

Executive Director
Carol Westlake
Todd Hash

Headline: InFormation – Common Threads
By Carol Westlake, Executive Director

“Community: a social, religious, occupational, or other group sharing common
characteristics or interests and perceived or perceiving itself as distinct in some
respect from the larger society within which it exists …”

      Often I find myself speaking with groups of people with very different
disabilities about common experiences that bring them together such as how a
disability has been woven into the fabric of their lives and set them apart from
most other Americans or how a disability has enriched their lives. As a result of
these shared experiences we sometimes refer to ourselves collectively as a
“disability community.”
       However, with a diversity of more than 50 million people with disabilities
in the United States, are we actually a distinct community? Do we represent a
coherent minority group with a shared identity?
       I think there is some resistance to this notion because it is common in our
culture for people with disabilities to be segregated – generally not of their own
choosing-- not only from the rest of society, but from one another based upon the
type of one’s disability. This separation is seen not only in society’s reliance on
institutional settings and separate classrooms for “special education,” but also in
the thousands of disability organizations that do great work focusing on a specific
condition and the relatively few cross-disability groups that exist.
       Nevertheless, many people with disabilities share common concerns and
experiences beyond the specifics of their unique disability. How individuals react
to those experiences may be markedly different, bringing richness and diversity
to our community. These shared experiences bring us together as a group and
begin to define the common threads of our community. A few of these shared
experiences include:
       Paternalism. It is not uncommon to be treated as though you need to be
       taken care of, patronized or watched over. It seems that society views a
       disability as something that makes you somehow less capable, less
       competent, and more child-like than others. These false assumptions
       about competence cut two ways. On the one hand individuals with
       disabilities are often denied opportunities because they are perceived as
       less competent. On the other hand they are applauded for being
       courageous enough to actually engage in the mundane activities of daily
       Stereotypes. Sadly there is the belief among some that if, “you’ve seen
       one person with a disability you have seen them all.” My favorite example
       is people who raise their voices to speak to someone who is blind or uses a
       wheelchair. Or worse, the assumption that a person who has experienced
       mental illness is a fragile flower who you should not risk upsetting.
       Discrimination. Experiencing discrimination – intentional or otherwise
       – may bind us most closely as a minority group and shape our common
       experience. Like members of other minorities, some people with
       disabilities often wrestle with the decision of whether to reveal their
       disability if it is not visibly evident. For instance, when applying for a job,
       an apartment, or admission to school, do you make reference to your
       disability? Or do you hold off until it is safer to do so? It is not always easy
       to know the best course of action.
       A good friend once told me that in her younger days she resisted thinking
of herself as a part of a disability “culture.” Over time she realized that claiming
membership in the disability community is not an “either/or” proposition. She
said, “I am a wife, a mother, a Catholic, a Southerner. But I have physical
disabilities that shape me, too. It is not how I am, not how I view myself, but it is
how I am going to be viewed in society.”
       It is the shared experiences like these that bring us together to share, to
support, and to work together for change. Thinking of ourselves as a distinct
community is not meant to isolate ourselves from the outside world, but to help
us work as one – in spite of our different disabilities and challenges – to integrate
ourselves more fully in a society that one day will look beyond the disability to see
the whole person.

Children’s Corner

Headline: Meet Odell

       He is a fifteen-year-old who loves the attention of animals! He loves
singing and reading.

More about Odell
       Odell is a delightful young boy with special needs who loves daily
interaction with his family. He also loves “quiet time” in his room and television
like so many other teens. He likes to be around people and he attends church
regularly with his foster family on Sundays. He is shy when it comes to strangers,
but warms up in such a positive way after a few visits.

What Others Say About Odell
       Odell’s foster mother says, “Odell is a very lovable child. He likes for his
head to be rubbed, and he likes to lay in his bed listening to the radio.”

What You Can Do For Odell
       Odell is not able to communicate verbally and uses a wheelchair. He is
quadriplegic and has a feeding tube as well as takes daily medications. Odell will
need a family who would be willing to make a lifelong commitment to him.

For More Information
       Call Karen Stancil at (423) 478-0351 or Kerry Hickman at (423) 479-0591

Headline: Family Voices Welcomes New Family Resource Specialist

       Treva Sease is the new West Tennessee Family Resource Specialist for
Family Voices at the Tennessee Disability Coalition. Treva lives in Memphis
where she has been working for several years as respite/resource coordinator for
the Memphis Respite Voucher program. Through her advocacy work and as the
parent of two sons with special health care needs, she is very knowledgeable
about services and resources for families.
       Treva joined the team of parent staff with Family Voices on a part-time
basis following the departure of Charlene Harmon, who has moved to Texas.
Treva will concentrate her activities with the Family-to-Family Health
Information Center grant program, which assists families across the spectrum of
disabilities and chronic illnesses of children and youth.
To contact Treva and her counterparts in Middle and East Tennessee:

West Tennessee
Phone: 901-233-6078

Middle Tennessee
Phone: 931-686-3353

East Tennessee
Phone: 423-234-2334

Member Feature

Headline: Tennessee Conference on Social Welfare: The Vision to See. The
Faith to Believe. The Courage to Do.

“What is TCSW?”

       Almost every day I hear questions like that, or “What’s TCSW doin’ settin’
up a Medicaid meeting? Aren’t they just a bunch of social workers?” I’m
guessing everyone who asks me to explain TCSW regrets having opened their
mouth. Primarily because what they get in return is long and animated, full of
details about the past, present and future of this great group. Often it goes
something like this:
       The TN Conference on Social Welfare (TCSW) is a unique, gentle giant.
What do we do? We work to identify social issues affecting Tennesseans,
particularly our most vulnerable, and to implement solutions. Social Welfare
means Social Wellness. Have we been effective throughout our 93 year history?
You bet.
       The beauty of TCSW is our perspective. It’s big. From Aging to Adoption,
from the Capitol to the Community, our big picture outlook identifies the
connects, the disconnects and the path to a better Tennessee.
       We teach. We advocate. Volunteer-driven, with six Regional Steering
Committees, TCSW takes one beyond ones’ self and work to see the power of
coordinated solutions. Our Fall Regional Training Conferences and statewide
Annual Training Conference are awesome (reaching 2,300 people in 2005) – full
of learning, inspiration, and real connection with other services, other advocates,
and other resources.
       Born of the social reform movement, our rich history began in 1913 (after
the Southern Sociological Congress in 1912 …OK, I can tell you more about that
later) as the TN Conference on Charities and Corrections. TCSW led efforts to
end lynching, child labor exploitation, convict-leasing, as well as warehousing of
the poor, the elderly and people with disabilities. More recently Linda Moynihan
quietly led TCSW from 1980 to 2005 to effect big, positive changes in state policy.
       Today, TCSW is still pulling with and pulling together people to do the
right thing. Terrific folks like the Coalition’s Carol Westlake and Dara Howe are
among the leaders from many state and local nonprofits, constituents, academia,
front-line staff, citizens, policymakers, and more who make my job the best, at
least to me, in the state.
       A great job fills you with passion. So much so that you hurt for those who
are hurting. And I hurt when I read dismal statistics like:
       • We’re last among states in percentage of spending for home and
       community based services (We all know this).
       • 43% of our kids live in families with income below 200% of the poverty
       • 48% of all Tennesseans ages 65 and over have a disability, as do 22% of
       Tennesseans between 45 and 64 years of age.
       • In 2005, 41% of Tennessee fourth graders were below the basic reading
       • 30% of all Tennesseans living in poverty have a disability.
       • Annually 700 Tennesseans commit suicide, 20% above the national
       • The average lifespan in Tennessee is 75 years, 45th among the states.
       • And there are so many more indicators demanding change.

       This past informs and inspires us to work harder so let’s get to it! (If I
sound like a social worker, I am one. And proud of it). Now, back to our history
lesson – Governor Ben Hooper brought 800 people to Nashville in 1912. Oh, too
much information? OK, if you want to know more, visit our website at for all the nitty gritty details.

Shelby Tabeling, MSW, is the Executive Director of the TN Conference on Social
Welfare. For more information contact TCSW at 615-313-9980.

          TCSW 94th Anniversary Annual Training Conference
                  Stars In Our Midst: Inspiration for Innovation
                             April 3, 4, and 5, 2007
                   Loews Vanderbilt Hotel, Nashville, TN

       Long recognized as the premier training opportunity in the state, the
annual conference brings together citizens and professionals dedicated to a high
quality of life for Tennesseans and state-of-the-art human services.
       From Adoption to Aging, the conference provides over 72 workshop
seminars in a variety of disciplines, with a focus on identifying underlying
barriers to positive, productive lives for Tennesseans and addressing proven
strategies that work to prevent and alleviate them. The 2007 Training Conference
is also designed to improve nonprofit management, public policy, and engage
sustained citizen involvement. CEU’s will be offered at the conference and it is an
opportunity to meet all or most of the annual requirements for certain
professional categories.
Presenters and Trainers
       If you are interested in participating as a Presenter, we welcome your
course summaries for consideration. We must have all proposals by November
15, 2006, and you will be notified by December 15, 2006. It is imperative to get
these in early.

For more information about this event as well as our Regional Trainings this fall,

Coalition Project

Headline: Hearing and Screening Project Reaches Out to Take on Parent

       Family Voices of Tennessee at the Tennessee
Disability Coalition has hired three part-time parent consultants to inform and
support parents of children with hearing loss. The three are working exclusively
with the Newborn Hearing Screening project funded by the
Tennessee Department of Health through a federal grant.
       They are Wonda Houston of Memphis, Teresa Turnbo from the greater
Nashville area, and Camille Keck of Knoxville. Each has a child with a hearing
loss and a strong desire to assist other families to manage the needs of their
children with a hearing loss or related condition. Wonda Houston has an
extensive work background in disability services as a technician and speech
assistant and as a special education classroom assistant. For several years Teresa
Turnbo has served as the family outreach coordinator at the Vanderbilt Kennedy
Center. Camille Keck is the cofounder of FLASH, a support group for families of
children with hearing loss.
       As parent consultants for Family Voices, the three are working to build
and strengthen family networks and resources for families of children and youth
who are deaf or have hearing-related conditions. They also promote awareness of
early detection, diagnosis and treatment of hearing conditions. They coordinate
their outreach activities with service providers, hospitals, clinics, and other
programs that serve or refer families dealing with hearing loss. The parent
consultants work in concert with Family Voices’ three regional family resource
specialists who serve families across the spectrum of disabilities and chronic
illnesses of children and youth.
       The project is made possible through a grant from the Maternal and Child
Health Bureau. Jacque Cundall, RN, directs the program at the state level. The
overall goal of the program is to increase early screening and diagnosis of hearing
loss at birth so that interventions to assist the child and family can be
coordinated. The program has been in place at the state level for several years
and has clearly made an impact on the screening rates at birthing hospitals across
the state.

Newborn Hearing Screening (NHS)
      1999: 28 hospitals (54% of births) were performing NHS.
      2002: 66 out of 91 (73%) birthing hospitals conducted NHS.
      2003: 86 out of 89 (97%) birthing hospitals conducted NHS (Jan.-June)

       In the past couple of years the focus has included greater emphasis on the
families of young children with hearing loss. Experienced, knowledgeable parents
help inexperienced parents learn about services, resources and other issues
related to living with a child who is Deaf or hard of hearing. For two years,
The Coalition and Family Voices coordinated the services of one parent
consultant, Karen Dockrey, who was very involved in the development of
brochures for parents, physicians and hospitals. She also consulted with families
and provided assistance through phone, email and mailed materials.
      With the recent hiring of three parent consultants, there can be greater
emphasis on outreach in the east, west, and middle regions of the state. The
parent staff is able to learn more about national resources and successful family-
based programs in other states through attendance at conferences in Salt Lake
City, Utah, and Jackson, Mississippi.
      There is great enthusiasm on the part of all the Family Voices staff at this
opportunity to assist more families.

2006 Election

Headline: The Race is on for Governor: Governor Bredesen and Senator
Bryson Speak Out

      This November Tennesseans return to the polls and will be faced with the
choice of retaining Governor Phil Bredesen for a second term or sending a new
face to Nashville. The list of challengers includes State Senator Jim Bryson and
six independent candidates: David “None of the Above” Gatchell, Howard
Switzer, Carl “Two Feathers” Whitaker, George Banks, Marivauna Stout Leinoff
and Charles Smith.
      We asked Governor Bredesen and Senator Bryson if they would provide an
article for publication so that they could address the disability community and we
encouraged them to focus on the issues. In addition, we are publishing web links
and snippets of information from the three Independent candidates who we
found to have web sites.
      Furthermore, we would like to remind our readers that the Tennessee
Disability Coalition does not endorse candidates for any office. We hope that our
readers and voters everywhere will make reasoned, independent decisions based
on a variety of information sources.
Governor Phil Bredesen
       As governor, I’ve been fortunate to participate in more than a few proud
moments over the past few years. One of the proudest came just a few months
ago, on June 20, when I had the honor of signing into law Tennessee’s Autism
Equity Act. This bill, championed by the Tennessee Disability Coalition, clearly
and rightfully categorizes autism as a neurological disorder for the purposes of
providing health insurance to our children. It was a key victory for the disability
community in our state, and I believe there are many more victories on the
horizon — particularly over the next four years as our economy gets stronger and
as we put the perennial budget crisis behind us once and for all.
       At a broad level, I am committed to preserving and steadily increasing
resources for the various government agencies that serve Tennesseans with
disabilities, including TennCare, the Department of Human Services, the
Department of Health and the state’s Division of Mental Retardation. But more
specifically, I want Tennessee to focus on three areas that I believe can yield more
opportunities and choices for people with disabilities than perhaps anything else
we can do. First, I want to improve access to home and community-based
services. Second, I want to encourage the creation of more jobs for people with
disabilities. And third, I want to make sure that state government continues
complying with — and encouraging compliance with — the Americans with
Disabilities Act (ADA).
       There’s a common element underlying each of these goals: Independence.
I believe Tennesseans with disabilities have a fundamental right to lead
independent lives. I’m committed to doing everything in my power to advance
that cause.
       With respect to home and community-based services: Earlier this year, I
was proud to sign into law Public Chapter 604 that established a task force to
assess the needs of people with developmental disabilities, as it relates to these
services, and develop a plan to expand them. The task force is expected to
complete its assessment by June 30. Please know that, as the assessment moves
forward, I am fully committed to working with the Tennessee Disability Coalition
and other stakeholder groups to develop an effective strategy for helping expand
home and community-based services for all people with disabilities in our state.
       With respect to jobs: As governor, I believe Tennesseans with disabilities
have the right to earn a good living, and I believe our economy benefits from it.
To that end, I have supported efforts to encourage employers to hire people with
disabilities and last year I was proud to sign into law Public Chapter 490, which
established job tax credits to help make that happen. Moving forward, state
government needs to continue working with the private sector to raise awareness
about the productive roles that people with disabilities can play, and encourage
businesses to further consider them for employment. In addition to providing tax
credits, we might consider making job-training funds available to companies that
hire people with disabilities. I look forward to having additional discussions with
the Disability Coalition and others on how we take the next steps.
       Finally, with respect to the ADA: Our state and our nation have come a
long way in a relatively short period of time in our efforts to guarantee equal
rights and access for people with disabilities. Of course, as with other civil-rights
efforts, we can’t let up. Ever. With this in mind, I’m looking forward to working
with the Disability Coalition and others on how we can keep advancing the
principles of the ADA — whether it’s improving access to voting machines or
enforcing fair employment practices. In a small but important symbolic
commitment, I would note that my wife, Andrea Conte, is leading the charge to
make Tennessee’s historic Executive Residence accessible to wheelchairs, with
ramps and elevators, for the first time in its 77-year history. Whatever the issue
or opportunity, please know that I am committed to upholding the values of the
       Finally, echoing the independence theme I mentioned earlier: Whether
we’re talking about home and community-based services, job creation or ADA
compliance, I believe it’s vitally important that state government work hard to
create more choices and opportunities for Tennesseans from all walks of life.
Every person deserves to be able to make decisions based on what’s best for them
and their individual circumstances. The more choices that are available, the
happier, healthier and more productive our citizens will be. I look forward to
working with the Disability Coalition — and each and every one of its members.

Biographical Note
       My wife, First Lady Andrea Conte, and I are active members in the
community, locally and statewide. I’m a founding member of Nashville’s Table, a
nonprofit group that collects discarded food from local restaurants and
distributes it to the city’s homeless population. I also founded the Land Trust for
Tennessee, a nonprofit organization that works statewide to preserve open space
and traditional family farms. Andrea is founder and president of You Have the
Power – Know How to Use It, a nonprofit organization dedicated to raising
awareness about crime and justice issues.
       I was born on November 21, 1943, and grew up in rural Shortsville, N.Y.
Andrea and I moved to Nashville in 1975. I earned a bachelor’s degree in physics
from Harvard University. I’m an avid hunter and outdoorsman, a licensed pilot
and I enjoy painting as a hobby. Andrea and I are the proud parents of a son, Ben.

To learn more about Governor Bredesen and his campaign
Phone: (615) 256-4480
On the web:

Senator Jim Bryson
       We are entering an era in American history where equality of opportunity
can truly be realized. As a conservative, I believe government should be about
helping to ensure opportunity and helping to provide opportunities to people so
that they can help themselves. As your next governor, I want to make that vision
a reality so that all Tennesseans are treated equally regardless of race,
background or health.
       As I have traveled across the state, I have heard the stories of those who
were removed from TennCare. Tragic stories of Tennesseans, many of whom had
preexisting medical conditions, who no longer receive the medication they need
to survive. While I was in the State Senate, I worked hard to allow 67,000 of the
uninsurables, many with disabilities, to retain their TennCare coverage until a
better solution could be found. Others, however, fought my legislation and it was
defeated. I brought that legislation because it could be done in a fiscally
responsible way but, more importantly, because Tennesseans deserve better than
to be treated as a line item or a statistic in a budget. We deserve to be treated like
the real people that we are.
       In the state legislature, I worked hard to ensure that persons with
disabilities were given equal access to opportunities assured to all Tennesseans. I
sponsored legislation which established a departmental task force within the
Department of Mental Health and Developmental Disabilities to conduct a
statewide assessment of the needs of those with developmental disabilities other
than mental retardation for whom comprehensive home and community based
services do not exist. It also required the department to develop a plan to provide
cost-effective home and community-based services for such persons.
       I also tried to reduce the “hassle factor” by introducing legislation that
would allow a disabled person to provide a notarized letter from a licensed
physician in order to meet requirements for a disabled plate and placard.
       One of the bills of which I am most proud is a piece of legislation I
sponsored with State Representative Harry Brooks (R-Knoxville) that encourages
recycling centers to employ those who are developmentally disabled.
       The legislation allows for the Department of Environment and
Conservation to establish criteria for solid waste management facility applicants
to receive preference for matching grants if they employ adults who have
developmental disabilities.
       I am also a small business owner. I realize that one of the biggest
challenges facing business owners are rising health care and insurance costs.
That is why I was the prime sponsor of a bill which provided incentives through
tax credits to encourage employers in hiring persons with disabilities and that
would furnish benefits such as health insurance.
       As your Governor, I will work very hard to implement policies that
emphasize independence and empowerment for individuals with disabilities and
their families. Self-determination should be a right for every Tennessean and I
will always strive to make it a reality.

Biographical Note
       State Senator Jim Bryson was elected in 2002 to represent the 23rd
Senatorial District, which includes Williamson County and a portion of Davidson
County. In his first term, Jim was named Republican Freshman of the Year by the
Tennessee Journal, Legislator of the Year by the ARC of Tennessee and a “Top
Five” Legislator by Business Tennessee Magazine. Jim’s colleagues in the Senate
recognized his leadership ability by electing him Senate Majority Whip in 2005.
       Jim founded 20/20 Research, Inc. in 1986, a market research firm based
in Nashville. 20/20 Research serves clients throughout the United States. In
1999, the company opened an office in Charlotte, North Carolina. The company’s
success has recently led to a new office located in Miami, Florida. He is married
to the former Carol Ratliffe of Greeneville, TN. In 1994 they adopted Maria (7),
Nadia (3) and Nicholas (2) from Pechora, Russia. Two and a half years later, the
family was blessed by the birth of Alex.

To learn more about Senator Bryson and his campaign
Phone: (615) 727-0941
On the web:

David “None of the Above” Gatchell
       The None of the Above option should be politically neutral for liberals,
conservatives, Libertarians, Greens, Democrats, Republicans and every other
shade in the political spectrum. NOTA isn’t associated with any ideology or
position. It’s a rejection of an entire slate of candidates, and that is its only
purpose. It’s a demand by the voters for a new election. A vote for me is a vote for
a new election. So my feelings about any other issues are irrelevant to my being a
       Source: Adapted from the candidate’s website
Howard Switzer
       I decided to run when I saw our current Governor, a former HCA
(Hospital Corporation of America) executive unnecessarily eliminate TennCare
coverage for 330,000 people. This governor calls such protection of public health
socialism and favors private systems. I believe the public’s health is a resource
like any other and that it should be protected … I support a national single-payer
healthcare program but since we do not have one I hope to make this campaign a
referendum on healthcare for all here in Tennessee. If elected, I will assemble a
team of experts to design a single-payer program based on the one currently
being proposed to Ohio’s legislature.
       Source: Adapted from the candidate’s website

Carl “Two Feathers” Whitaker
       I run to become the next Governor of this great state, I run on the
foundation of our founding fathers. Elected officials are to be PUBLIC
SERVANTS, not dictators. It is not our job to rule over you, it is not our job to
intrude into your home life, it is not our job to intrude on you way of worship.
Government is not a babysitter, it is not your parents and it sure is not sitting on
the throne of GOD. As your Governor, I will do all in my power to fight for you to
regain your freedoms, your God given Rights; I will work with any and all
Legislators who wish to do the same. Help me to become the next Governor of
Tennessee and I will put us on the “Right Road to a Better Future.”
       Source: Adapted from the candidate’s website

Other Independent Candidates
George Banks, Marivauna Stout Leinoff, Charles Smith
Headline: Children Caught in the Crossfire of High Stakes Finger Pointing
Feature Story

       If the devil is in the details then it is true that families and their advocates
are bedeviled by recent changes to state policies affecting services to the most
vulnerable and medically fragile children (Children to age 21, as defined by
       Families and advocates are not the only one confused and confounded by
new procedures that tighten and restrict long-term care services. Confusion
veiled in vagary is evident among state caseworkers, supervisors and
administrators responsible for guiding families through a labyrinth of Medicaid
EPSDT (Early and Periodic Screening, Diagnosis and Treatment benefits for
children in Medicaid law) rules, TennCare MCO (Managed Care Organization)
appeals, and Medicaid HCBS (Home and Community Based Services as defined
in Medicaid Law Title 1915(c) waiver guidelines.)
       It would be humorous except that the stakes are so very high for these
children and families. Without the needed ongoing care and services of nurses,
nurse aides, and personal assistance services (in waiver parlance) or personal
care services (if you’re talking TennCare), these families become stressed to the
breaking point. Marriages fall apart and/or children are at risk of placement in
alternative settings such as foster care or intermediate care facilities (ICF), often
at great cost financially to the state not to mention the human, emotional toll on
families that are the foundation of our society.
       Although the new procedures might have been well intentioned, the effects
have been frustrating at best and disastrous for families. The intent was to bring
Tennessee into compliance with federal rules by ending the use of finite Medicaid
waiver dollars to pay for EPSDT services that provide all the chronic medical
care of these high-needs children. In theory this will free up waiver dollars that
should instead be directed to serve folks with mental retardation on the waiting
list. In so doing, the inordinate costs for this ongoing care would be borne by
commercial MCOs contracted to serve Medicaid-eligible enrollees.
       At a time when MCOs are once again shouldering the costs for care that
exceeds the normal capitated (per person) rate paid by the state, this idea looks
good – on paper. After all, EPSDT benefits are the most comprehensive of any
health benefits plan; they are mandated by federal law and, therefore, required of
any MCO under contract with the state.
       Here’s the rub and it’s no secret: it ain’t easy getting EPSDT services
beyond rudimentary care and treatment. That is, if you can find providers willing
to serve children on TennCare. When you are talking about children who are
medically complex and need ongoing care for chronic conditions, it can be very
difficult and time consuming to coordinate and navigate the system including the
endless rounds of appointments, calls, letters, forms, appeals, etc. Even the most
seasoned parents and advocates struggle to make EPSDT work. Now, it is even
more challenging as the MCOs have greater incentive to limit access to care that
could cut into their profits.
       Compounding the problem are the differing views and levels of
understanding among state agencies as to whose responsibility it should be to pay
for ongoing home-based or long term care for kids. DMRS (Division of Mental
Retardation Services administers the ICF/MRwaiver programs) routinely points
a finger at TennCare which is more than willing to return the favor by passing the
buck back to DMRS, all while a child falls through the cracks.
       Until recently, there was understanding among all parties involved that
children applying for or already ‘on’ the waiver could receive necessary in-home
care through the waiver program without having to jump through additional
hoops. Not that this accomplishment was ever easy! A severe shortage of nurses,
home health aides and other caregivers willing to work long term in a family’s
home makes hiring and retention of qualified caregivers a huge challenge, and
the list of agencies willing to employ such home-based staff is very limited,
especially in rural areas of the state.
       In June, DMRS issued a draft document Policy on Medicaid HCBS Waiver
Personal Assistance Services along with a draft chart listing various home-based
services and guidelines as to whether TennCare, waiver, both, or Medicare covers
a service. Shown below is a comparison of these services as defined by the
responsible agency. It is of limited help in sorting through the problems and
confusion. There is overlap among the service definitions and one must give
astute attention to the precise name of the service. We’ve added italics in places
to assist the reader.
       If our dear readers are able to slog their way through this article and find
themselves thoroughly confounded by it all, then welcome to our world.

Home Health Aide Services (TennCare only)
       “Home Health aide services furnished by qualified aides, under the general
supervision of and written instruction of a registered nurse, and homemaker
services. Home health aides may provide personal care services. The aide
services must be monitored and assessed at least every two weeks by a registered
nurse through an on-site visit to the enrollee’s home. Aides may also perform
household services to maintain a safe and sanitary environment in areas of the
home used by the enrollee, such as changing the bed or light cleaning and
laundering essential to the comfort and cleanliness of the enrollee. Homemaker
services may include assistance in personal care, maintenance of a safe and
healthy environment and services to enable the individual to carry out the
treatment plan. (TennCare TSOP {TennCare Standard Operating Procedure} 6
013A, 1/96).

*For Children (under age 21) requesting home-based care
You must request through TennCare (no coverage through the HCBS waiver).
TennCare also covers personal care services through EPSDT.

Nursing Services (Waiver and TennCare)
       “…skilled nursing services that fall within the scope of Tennessee’s Nurse
Practice Act and that are directly provided to the enrollee in accordance with a
plan of care.” (As defined by CMS - Centers for Medicaid and Medicare Services,
the federal administrative agency).
*For Children (under age 21) requesting home-based care
If Medicare eligible, must request through Medicare; if not Medicare eligible,
must request first through TennCare.

Personal Assistance Services (waiver only)

       “…the provision of direct assistance with activities of daily living (e.g.,
bathing, dressing, personal hygiene, eating/feeding, meal preparation excluding
cost of food), household chores essential to the health and safety of the service
recipient, assistance in paying bills, accompanying the service recipient to health
care appointments, and interpersonal and social skills building to enable the
service recipient to live in a home in the community. It also includes medication
administration as permitted under Tennessee law.”

*For Children (under age 21) requesting home-based care
Medically necessary personal care services can be obtained as a TennCare
EPSDT service for children. Personal assistance services that are more custodial
or community-based in nature may be requested directly through the HCBS

Personal Care Services (TennCare only)

       “This gives you help with bathing, dressing, combing your hair, brushing
your teeth, eating and other everyday jobs (including some trips to and from the
grocery store, drug store and other places that you need for someone to go).”

Headline: Navigating Tennessee’s Twilight Zone of Services

       Picture, if you will, an overly simplified (believe it or not) demonstration of
the Medicaid waiver vs. EPSDT conundrum, based on the experiences of our
Family Voices family resource specialists and families with whom we’ve had
contact. Now, imagine yourself as a parent navigating through time and space
while avoiding many hazards that threaten your goal, which is getting needed
home based care for your child with a disability.
       For several years your teenage son has been receiving in-home care
through the waiver from a nurse. Your son has mental retardation, seizures and
other physical challenges. Other than case management (support coordination),
nursing is the main service provided in his Individual Support Plan.
       Recently you are informed by DMRS that the level of care necessary for
your son could be provided through personal assistance services (a lower cost
service provided by a lesser trained, uncertified person). Should you appeal this
recommendation or comply with the request? If you comply, it is likely that your
son’s nurse will go elsewhere rather than continue at the lower rate paid for PA
services. This means recruiting and orienting a new person who is a stranger to a
young man who doesn’t handle changes very well. Aside from that dilemma, a
larger problem looms. If your family goes along with the state’s plan, your son
risks losing waiver services because TennCare will have to be utilized first. So,
you comply and are pointed in the direction of TennCare and your son’s MCO.
       If your son’s MCO denies the request (as frequently happens), you must
exhaust all appeals to obtain the service. Weeks and weeks after appealing to the
MCO, then to TennCare, and all the way through to a decision by an
administrative law judge, if the appeals are unsuccessful, only then can the
waiver be potentially accessed for the in-home services. One further hitch in this
scenario. Does TennCare (EPSDT) provide personal assistance services? It
depends on whom you ask. DMRS representatives will tell you ‘yes.’ TennCare
representatives have told us ‘no’ PA services are not provided. However, personal
care assistance is on the list of EPSDT services. What’s the difference, you ask?
Again, it depends on how you word the question and who answers.
       Here’s where things get really murky. If you request PA services from
TennCare and TennCare does not offer that service, then you cannot appeal a
service that is not available in the first place. It’s a Catch-22 situation. If you’re
still reading this bizarre but very real scenario, consider this: If you succeed in
getting personal assistance services or personal care assistance through
TennCare for your son, it is likely that he will be disenrolled from the waiver
       Unfortunately, when he ages out of EPSDT services he will probably need
the waiver services again. At that time, who knows whether there will be a waiting
list for the waiver? Since there has always been one, it is a good bet that your son
will have to queue up and wait his turn. Right now, the only folks getting on the
waiver are those whose circumstances are described as ‘crisis’ which means their
caregiver has died or is incapacitated and there’s nobody else to step in.
       If you succeed in ‘winning’ the needed services for your son, then we invite
you to present a workshop for the rest of us. We could certainly learn from any
tips you’ve discovered in the Twilight Zone.

      Total DMRS Waiting List
       4,564 people (As of June 2006)

      School-aged Children:
       826 will soon graduate or age out of special education which is considered
       a service - 1,969 people (43%)

      “Pure” Subset Of The Total Waiting List
       These individuals were recently defined by DMRS as “pure” because they
       are not receiving state services - 2,257 people (49%)

      Number On The Pure List Who Are Considered ‘Crisis’ Or
       571 people
Headline: Individuals with Disabilities Education Improvement Act

Brief History
       The Individuals with Disabilities Education Act (IDEA) was revisited by
Congress in 1997. Although reauthorization sparked contentious, sometimes
bitter debate, IDEA ‘97 brought gains for students with disabilities and their
families including a stronger focus on partnership, an insistence that all students
participate and progress in the general education curriculum, and the mandate
that schools must continue to educate suspended or expelled students with
IDEIA 2004
       Congress again undertook reauthorization in 2003. In July 2005, a new
version of IDEA became law. The formal title is now “the Individuals with
Disabilities Education Improvement Act,” but, in a small act of rebellion, many
advocates refuse to accept that title - believing that IDEA 2004 significantly
weakened key rights and protections.
       Following reauthorization, the federal Office of Special Education and
Rehabilitative Services (OSERS) drafted regulations to spell out how the law
should work in the day-to-day life of students. While regulations can’t overturn
any element of the law, they can “tidy up” or explain unclear provisions.
       Families, advocates and schools alike agreed that the draft regulations
failed to clarify the law. Therefore advocacy organizations slogged through
hundreds of pages of proposed regulations to identify the most worrisome
components and urged OSERS to protect our hard-won rights in the final
regulations. As is often true in disability advocacy, the final regulations - released
in August 2006 - delivered both bad and good news.
       In order to assure proper implementation of the new law, a taskforce will
begin the work of aligning Tennessee’s rules and regulations with the federal
regulations in October. A representative of the TN Disability Coalition on
Education (DCE) will serve on the taskforce, so please forward any concerns,
questions or recommendations to DCE at
Summary of Changes
      Below are the most significant changes in the more than 1,300 pages of
regulations. Clearly positive changes are marked with an asterisk (*).

Common Abbreviations: SWD – student with a disability; LEA – local
education agency (local school system); SEA – state education agency; FAPE –
free appropriate public education; LRE – least restrictive environment; TCAP –
Tennessee Comprehensive Assessment Program.

1. IEP Process
      IDEA 2004 contains many provisions, especially regarding IEP meetings,
in which parents may “agree” to waive their child’s rights. There is no standard
for or definition of an “agreement” between parents and the school.
      a. Short-term objectives are required only for students who take the
      portfolio or out-of-level TCAP assessment (typically students with mental
      retardation/intellectual disability). However, States may encourage the
      use of short-term objectives for other students.
      b. Progress reports don’t have to indicate whether progress is sufficient to
      meet the goals by the year’s end - no mention of how often reports should
      be provided.
      c. Allows changes to be made to the IEP without convening entire team—
      unclear if parental consent is required or which components may be
      changed. Families receive a copy of the changes only upon request.

2. IEP Team
      a. Members may be excused from attendance at part or all of the meeting.
      b. Parents must give written consent; absences must be documented.
      c. *Each teacher/provider must be informed of any role in implementing
      an IEP including specific accommodations, modifications and supports.

3. Transition to Adulthood
      a. Now begins at 16, rather than 14. However, States may lower the age.
      b. *IDEA funds may be used for student to attend a transitional program
      on a college campus.
      c. Instead of an evaluation before student graduates with regular diploma
      or ages out, the IEP team must prepare a summary of academic
      achievement and functional performance, *including recommendations on
      postsecondary goals.

4. Transition from Early Intervention
      a. *The IEP team must consider the Individualized Family Service Plan
      b. *LEAs without an inclusive public preschool must explore alternative
      methods to ensure the Least Restrictive Environment.
      c. *If an LEA determines that placement in a private preschool program is
      necessary, it must be at no cost to the parent.

5. Eligibility
      a. *FAPE must be available even if the child has not failed or been
      b. *Learning Disability: no longer necessary to identify an IQ-achievement
      discrepancy. States MUST permit use of Response to Intervention.
      c. *Tourette Syndrome is added to Other Health Impairment.
      d. *States must establish policies to prevent school personnel from
      requiring children to take medication.

6. Due Process
      a. *An opportunity must be provided for voluntary mediation.
      b. *Remedies for LEA’s failure to provide appropriate services specifically
      include compensatory services or monetary reimbursement.
      c. Parents have 2 years to file for due process after they knew or “should
      have known” that an IDEA violation occurred unless LEA misrepresented
      or withheld information. States may shorten federal time limits. The
      phrase “should have known” is not defined.
      d. Complaint Notice
             i. Parent must file a complaint with LEA, with copy to SEA,
             describing nature of problem with supporting facts and proposed
             ii. Only issues presented in complaint may be addressed in due
             process hearing.
      e. Mandatory Resolution Session before due process can be fi led. No
      requirement to inform parents of the differences between a resolution
      session and mediation; nor is the resolution session well-defined.
             i. LEA may not bring attorney unless parent does; attorneys’ fees
             are not reimbursable.
             ii. If agreement is reached, it is legally binding, though either party
             may void within 3 business days.
             iii. Parties may agree in writing to waive meeting or use mediation.
      f. Mediation
             i. May be used for any dispute.
             ii. If resolution reached, the written agreement is legally binding.
             iii. All discussions are confidential and may not be used in any
             subsequent hearing.

7. Attorney’s Fees
      Parents may be required to pay LEA’s attorneys if the cause of action is
determined to be frivolous, unreasonable or presented for improper purposes
such as harassment or delay

8. Discipline
      a. Stay Put
             i. LEA may remove a SWD who violates the school code of conduct
             for not more than 10 days.
      ii. “Stay put” is the Interim Alternative Educational Setting during
      appeal. Previously, if LEA proposed to change placement after the
      IAES expired but parent appealed, child returned to the placement
      immediately prior to IAES.
b. The standard for FAPE is lowered for removed SWD; “participate”
instead of “make progress” in the general education curriculum;
eliminated language requiring “services and modifications” enabling child
to meet IEP goals.
c. Pattern of removal *Removed requirement that the behavior be a
manifestation; the LEA makes determination if a pattern exists, which is
*then subject to review through due process.
d. Manifestation Determination: no guidance on how a decision is made
when the parents and school present conflicting evidence.
      i. Burden of proof shifted from LEA to parent.
      ii. Behavior must be “caused by or have a direct and substantial
      relationship to the disability.” Factors to be considered are not
      defined. Deleted requirement to consider whether disability
      impaired child’s ability to control or understand consequences and
      whether the IEP was appropriate.
      iii. If not a manifestation, student remains in IAES during appeal -
      previously allowed only for zero tolerance offenses
e. Special Circumstances
      i. LEA may remove child to IAES for 45 days for “inflicting serious
      bodily injury.”
      ii. When hearing officer determines that the current placement is
      substantially likely to result in injury to the child or others, no
      longer required to consider:
             1. whether the LEA’s proposal is based on “a preponderance
             of evidence.”
             2. whether the school has made reasonable efforts to
             minimize risk of harm.
             3. appropriateness of child’s current placement.
       f. IAES 45-calendar day limit on removal is increased to 45 school days.
       g. School personnel can consider unique circumstances on case-by-case

9. Highly Qualified Teachers
       a. All special education teachers must be certified by end of 2005-06
       school year – they may not be on waiver.
       b. Teachers teaching core academic subjects must demonstrate subject
       matter competence.

Headline: Legislator Awareness Day Rebooted

       Yes, it’s getting close to that time again. That time of year where we
remind our lawmakers of the things that are important to our community and
forge new relationships and paths to the future! We are talking about Legislator
Awareness Day 2007!
       In the past Legislator Awareness Day has been held on a single day with
great crowds, lots of displays and, if you were lucky, visits with a legislator. Often
times Legislative Plaza was so filled with groups competing for attention and
legislators scrambling to numerous meetings that it was difficult to get the one-
to-one contact with a legislator that is so important to building a relationship.
       So to make things more productive and more efficient we have decided to
change things up.
       Instead of having “one” day for Legislator Awareness Day, we will have
three separate LAD’s for each grand region with each falling on consecutive
       For example, on February 28 we will have a LAD for West Tennessee. This
means that if you or your organizations are in West Tennessee, then we
encourage you to attend that day and perhaps work with us to help schedule
meetings with your legislators or a delegation from your region (i.e. the Shelby
County Delegation). We hope that this will help everyone reach their legislators
more effectively, avoid getting lost in the shuffle, and provide a greater
opportunity to focus on the issues that most concern you. The tentative dates for
next year are:

       February 28 - West Tennessee
       March 7 - Middle Tennessee
       March 14 - East Tennessee

*If you are interested in learning more about Legislator Awareness Day or
would like assistance planning LAD efforts, then please contact Courtney
Jenkins- Atnip today! She can be reached at or by
phone at (615) 383-9442.
                      VOTING IS OUR RIGHT

No One Can Exercise that Right For You So Don’t Let Your Vote Go To
                              Waste This Year!

      Early Voting - October 18th to November 2nd
      General Election - November 7th

       If you have questions about where to vote, check your Voter ID card or
call your county Election Administrator.

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