Summer 2006 Edition
Autism Society of Middle Tennessee
2006 Tennessee Legislative Session
Graduation: A Time to Reflect
Cover Photo: Sandra Derrick embraces her two children at the Autism Equity
Act reception on June 21, 2006 at the Kennedy Center.
Inside Front Cover:
Headline – A Whole New World
On May 22, Louise McKown was honored in Washington, D.C. with the
Paul G. Hearne Award which recognizes emerging leaders in disability
advocacy. The Tennessee Disability Coalition is proud to call Louise a friend
In recognition of this honor we are publishing excerpts adapted from
Louise’s speech at the award ceremony. This memorable event was held during
a national conference of the American Bar Association’s Commission on Mental
Health and Physical Disability Law.
People ask me how I can do what I do. I have a number of reasons. Like
Paul Hearne when injustice smacks you in the face and then your eyes are opened
to how other types of people with disabilities are treated, you have to react.
For me, first it was health insurance hassles and then access to buildings
issues. But my activities have expanded over the years…
The second reason is stated in this little book, entitled Believing in
Ourselves: the Wisdom of Women. It is a collection of quotes from famous
women. I would like to read you one by Dorothy Canfield Fisher, “there are two
ways to meet life; you may refuse to care until indifference becomes a habit, a
defensive armor, and you are safe – but bored. Or you can care greatly, and like
Paul Hearne live greatly – till life breaks you on its wheel.” Well, I may have
multiple disabilities, but I am far from being broken and I do not choose to be
The third reason is that Tennessee is a job security state for disability
advocates. We had people that thought courthouses or court proceedings did not
have to be accessible. Tennessee is dead last in providing home and community-
based support services. Some actually think that it is perfectly OK to move people
out of developmental disabilities institutions into private Intermediate Care
Facilities for people with Mental Retardation (ICF/MR). We have no Olmstead
plan in Tennessee. Our newly refurbished Legislative Plaza still does not have a
restroom or water fountains that are up to ADA code.
But what I have done has not been done alone. I have had my instigators
and co-conspirators. My boss, Lois Symington the executive director of the East
Tennessee Technology Access Center, is here. She hired me 11 years ago to do
public awareness about disability issues and some ADA work. She very early
learned that what she was really going to do was pay me to raise cane.
Eight years ago she said to me, “Get assistive technology into that long
term care bill.” I rolled my eyes and said, “Lois you realize they think this is
computers, and they won’t buy this.” She said, “It is up to you to make them
realize that it is also bent spoons, mounted nail clippers and reachers and
grabbers.” Getting AT in the bill was the easy part. I just pestered the right
legislators enough that they did not want to hear from me any more about this.
Getting assistive technology in the home and community-based services
waiver meant I had to rely on a co-conspirator, Carol Westlake, the Executive
Director for the Tennessee Disability Coalition…The first waiver did not include
AT, but now that it is up for renewal, it does.
Both of these women have had my parents roll their eyes when I come
home and say, “Guess what I will be doing now?” Somehow they have cared for
my cat when I was away and….having people they do not know, say, “are you any
relation to that Louise McKown?” Trust me that did not happen before I became
so active. This award is as much for these people as it is for me.
A word to any lawyer in the room whose aim is eventually to become a
Supreme Court Justice. First, do not mess around with the ADA. I do not need
my blood pressure raised, thank you. Also for those of you who want to debate
when life begins. It is not at birth or conception. It is at 40. Paul Hearne turned
40 the year the ADA was passed. And that is when I was diagnosed with this rare
progressive neurological condition that opened up a whole new world to me that I
never knew existed.
List of Articles in Order Presented
*InFormation – Power Concedes Nothing
*Voting Goes Digital in Tennessee
*Children’s Corner – Graduation: A Time to Reflect, Meet Bradley
*Member Feature – Autism Society of Middle Tennessee
*Coalition Project -- The Autism Equity Act
*Whirling Through the Web: Web Accessibility Project Update
*Tennessee Accessibility Act Updated
*Americans with Disabilities: Ready for the Global Workforce
*The 2006 Tennessee Legislative Session: Taking Two Steps Forward,
One Step Back
*Getting Out the Vote: Power - Influence - Progress
Coalition Quarterly Credits:
Special thanks to Larry Ballew who contributed his time and talents to this
edition by photographing the Autism Equity Act reception and the bill
signing with the Governor Bredesen. To learn more about his work visit
www.ballewdigital.com. 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 www.tndisability.org
Headline: InFormation – Power Concedes Nothing
By Carol Westlake, Executive Director
The Tennessee Disability Coalition got its start in 1984 when staff and
volunteers from seven disability advocacy groups began to talk about ways to
The founders chose a name for their endeavor, The Coalition for
Community Services. While the founding groups had different core missions and
constituencies, they all agreed that people with disabilities, regardless of
diagnosis or economic status, should be able to get the supports and services they
needed in their homes and communities rather than be relegated to isolation and
life in the shadows of an institution.
Over the years the Coalition has grown and changed its name (twice!), but
its mission and values have not. The Coalition, its members, and partners
continue to work for greater access to home and community-based services
because those services afford greater opportunities for independence, self-
determination, and control over one’s life.
Why? Because it is simply the right thing to do. It is what people want. It
is cost effective. There have been reports from the state comptroller, data from
other states, data from our own state; they all support the need and “rightness” of
providing home and community-based services. On countless occasions task
forces inevitably issued reports and plans that support a move away from
institutionalization. The legislature has listened to testimony, studied the issues,
and passed resolutions. And yet, Tennessee remains dead last in the provision of
home and community-based services.
Today, Tennessee is moving closer than ever to developing workable
alternatives for seniors and adults with physical disabilities. A new home and
community-based services Medicaid Waiver was recently submitted that will
include an expansion of the types of services offered by more than 130 authorized
providers. This waiver will consolidate existing waivers and by October could
make services available through the Commission on Aging and Disability to 3,700
people. The new waiver will have an average cost of $19,300 per person,
reflecting the greater range of services available and making it much more helpful
to those with more significant needs; however it still represents a significant
savings over the $30,000 it would cost for someone to live in a nursing home.
In addition, this year’s state budget includes an extra $800,000 to serve
people through the OPTIONS program which will help 200 additional people
access this non-Medicaid home and community-based program. This past year
also saw the introduction of a new Medicaid waiver for people with mental
While there has been progress. There is much left to do. The OPTIONS
program has more than 4,800 people on its waiting list. There are 4,500 people
with mental retardation on another waiting list. Worse yet, legislation passed this
spring would expand institutional services for people with mental retardation,
flying in the face of best practices, and drawing off resources that should be spent
on home and community-based services.
Frederick Douglas was right, power does not concede easily. As advocates,
we have long recognized that progress has only come because we demanded it.
When push came to shove, it has often taken rallies, protests and lawsuits to
foster change. Resistance to that change has been great. Advocates and people
with disabilities have been called agitators and rabble-rousers while we have seen
first-hand attempts to silence the truth and those who speak it.
This is the reason that we must remain vigilant in our efforts to end
Tennessee’s “institution first” mentality. This is why we must guard against
constant pressures “to go along to get along” that will slowly and inevitably
diminish our resolve to oppose actions that marginalize and segregate people
“Those who profess to favor freedom and yet deprecate agitation, are
men who want crops without plowing up the ground, they want rain without
thunder and lightning. They want the ocean without the awful roar of its many
waters…Power concedes nothing without a demand. “
-Frederick Douglass’ “West India Emancipation” speech, 1857
Headline: Voting Goes Digital in Tennessee
This fall polling places across Tennessee will look a bit different as the
counties introduce new, state-of-the-art voting machines that comply with the
Help American Vote Act’s accessibility requirements. Tennessee counties have
chosen almost exclusively to purchase modern DRE (Direct Recording
Electronic) voting machines to replace lever, punch card and optical scanning
machines. In most counties all machines in a polling place will be DRE’s ensuring
that voters with disabilities will not risk having their votes segregated from those
of other voters.
The lone exceptions are Hamilton and Pickett counties which will rely
primarily on optical scan systems supplemented with at least one DRE in each
polling place as required by HAVA. In these counties, voters should be able to
select which machine they want to use although it is reasonable to assume that
some voters with disabilities, particularly individuals with visual impairments,
will almost exclusively use the DRE systems.
To learn more about these systems check out the manufacturer websites
(listed below) or call your county election commission for information about
machine demonstrations in your area. A listing of counties using each machine is
MicroVote Infinity - www.microvote.com
Bedford, Bradley, Cannon, Carter, Clay, Cocke, Crockett, Cumberland, Dekalb,
Dyer, Fayette, Fentress, Franklin, Gibson, Giles, Grundy, Hamblen, Henry,
Jackson, Jefferson, Johnson, Lauderdale, Lawrence, Macon, Marshall, Meigs,
Montgomery, Overton, Perry, Putnam, Robertson, Rutherford, Scott, Sequatchie,
Smith, Stewart, Sumner, Tipton, Trousdale, Unicoi, Union, Van Buren, Warren,
Washington, and Wayne.
Hart Intercivic eSlate – www.hartintercivic.com
Anderson, Benton, Bledsoe, Blount, Campbell, Carroll, Cheatham, Chester,
Claiborne, Dickson, Grainger, Hancock, Hardeman, Haywood, Henderson,
Hickman, Houston, Humphreys, Knox, Lewis, Loudon, McMinn, Madison,
Marion, Monroe, Morgan, Polk, Rhea, Roane, Sullivan, and White.
ES&S iVotronic – www.essvote.com
Coffee, Davidson, Decatur, Greene, Hardin, Hawkins, Lake, Lincoln, McNairy,
Maury, Moore, Obion, Pickett, Sevier, Weakly, Williamson, and Wilson.
Diebold AccuVote – www.diebold.com/dieboldes.com
Hamilton and Shelby
To see videos of the new voting systems visit the State Division of Elections web
Headline: Graduation: A Time to Reflect, A Time to Honor and a Time to Say
Graduation is a special time for parents. We relish that moment of
ceremony to celebrate achievement and passage of our offspring to the next phase
of life. Recently my son Alex was among the sea of new graduates from Franklin
High School (FHS) who lined up to receive their diplomas. He was easy to spot.
He was the student with an adult attendant to wipe his chin and push his red and
black wheelchair, while his father and I were sitting amidst the throng of families
focused on their particular graduate.
It’s hard to say how meaningful this commencement exercise was to Alex.
He doesn’t have the oral language skills to tell us. I imagine that parts of it were
pretty boring, as it was to us, his classmates and their relatives in attendance.
Let’s face it: we’d all be happier if the class of 2006 had far fewer names on the
I imagine there were some present who wondered how in the world this
very young looking youth with obvious severe disabilities could possibly merit a
diploma. Why would his parents put him and themselves through this arduous
event designed to extol academic and other accomplishments, which he so
pointedly does not have?
Here’s my response: It is true that graduation brought us a few bittersweet
moments. It’s only natural that we would imagine fleetingly the strong, brilliant
son he might have been, if only…However, many parents sitting with us surely
had their own bittersweet feelings about lost opportunities and missteps of their
children and of themselves.
Of course, I was not gauging Alex’s achievements in terms of his
acquisition of knowledge or the expression of prowess in academics, in sports, or
as a leader. I was celebrating Alex’s success by other measures. His graduation
marked the closure of an 18-year relationship with the Williamson County school
system and an array of mostly competent, caring and dedicated teachers and
At age 22, Alex has aged out…gone as far and as long as education policies
permit. Were it my choice, Alex would continue in the excellent community-
based JOBS program at FHS. There is nothing remotely equivalent for him as an
adult, although we’re trying to make it so.
I dare say that very few classmates have had as significant an impact on
the school system as Alex. He’s been a pioneer in helping move the system toward
fully realizing the letter and spirit of the laws that provide civil and educational
rights for students with disabilities.
As a 4-year-old, Alex began his schooling in what was known as the
“severe-profound” classroom that included 20-year-olds and was housed in a
county middle school. Today, all students can attend an age/grade appropriate
school with their siblings and neighbors. Inclusive education is another ‘best
practice’ that Alex pioneered, affording him and his general education peers
opportunities to learn with each other and from each other, although not
necessarily with the same educational objectives or strategies.
Alex’s greatest contributions have been and will continue to be as a
Teacher, not as a Learner. If you believe, as I do, that we are put on this earth for
a purpose, then you understand. Alex is fulfilling his purpose in life as surely as
the most learned and accomplished scientist, doctor, author, or theologian.
His is a pure and unblemished soul. From him and others like him we can
learn humility; kindness; the value of the simple things in life; gratitude for God’s
unique gifts to us as individuals; an appreciation that most of us need a lot of help
from one another; that service to others is what we all should be about; that
nothing enriches life like family and friends; the healing power of love; and finally
learn that riches and achievement aren’t more important than any of these.
So the next time you see a young person such as Alex in their cap and
gown, think kindly, offer encouragement, and give thanks.
Dara Howe directs the Family Voices program at the Tennessee Disability
Headline: Meet Bradley….
I want to be a basketball player when I grow up!
I want to be just like Michael Jordan!
More About Bradley...
Bradley is a very affectionate child of fourteen who enjoys being around others.
He has a sweet smile and likes to be helpful. Bradley enjoys playing basketball
and participating in Special Olympics’ events. He likes to go to the movies, roller
skate, and visit the aquarium. Bradley loves to travel and spend time with his
What Others Say About Bradley...
His case manager says, “Bradley is a handsome child with a lot of potential. He
has a sense of humor and cares about others.”
Caregivers at his residential school say that Bradley is a friendly, personable child
who does well when provided with a combination of praise and consistency. He is
placed in a self-contained classroom as his developmental challenges require
close supervision and a structured environment.
What You Can Do For Bradley...
Bradley needs a family without children who can provide structure and a high
level of supervision in a loving environment.
Bradley will need his family to be strong advocates for his developmental,
educational, and behavioral needs. Bradley will thrive in a family where his
strengths are celebrated.
Appropriate supports to assist in caring for Bradley can be arranged through
To find out about becoming an adoptive parent for Bradley, call the NorthWest
DCS regional office at 731-286-8304, and ask to speak with Terrie Richards or
Headline: Autism Society of Middle Tennessee
Autism is a complex neurological disorder that typically appears during
the first three years of life. It affects the normal functioning of the brain,
impacting development in the areas of social interaction and communication
skills, behavior, and sensory integration. Although Autism is a spectrum disorder
that affects each individual differently and to varying degrees of severity, it
typically impairs thinking, feeling, language, and the ability to relate to others.
These impairments challenge not only the individual but also family, friends, and
That is where the Autism Society of Middle Tennessee (ASMT) comes in!
ASMT is a 501(c)3 non-profit organization dedicated to promoting Autism
awareness and ensuring that individuals in Middle Tennessee with Autism, and
their families, receive appropriate, effective services. Currently, there are more
than 4,000 families, individuals, professionals, and organizations in 32 counties
of Middle Tennessee who directly benefit from ASMT’s services, including
information and referral, support, education, and advocacy. ASMT serves this
large and diverse population through monthly workshops, orientations,
conferences, an information and referral office staffed by parent representatives,
a library, and a web site.
After several years of relative inactivity, ASMT was re-energized in 1995 by
Laura Lloyd, a mother of a child with Autism. ASMT’s first board president, and
later executive director, Laura started many of the unique programs and services
that the chapter offers today. Like the true grassroots organization it is, ASMT
started out in a spare bedroom in the president’s home. As the chapter grew,
ASMT soon found a more permanent home in its current office space, which is
housed in the same building as the Tennessee Disability Coalition. This physical
proximity to other disability advocacy groups has helped ASMT to be an active
participant in the larger disability community in Tennessee.
Currently, there are three parent representatives holding paid positions in
the ASMT office, fielding phone calls and emails from families with a newly
diagnosed child, providing information and referral services, and helping to
organize the chapter’s many programs. These three employees are the life-blood
of the chapter, and have been ASMT’s most valuable assets in garnering a
reputation as the “Voice of Autism” in Middle Tennessee.
In addition to these employees, ASMT is pleased to announce the
appointment of Amanda Peltz as Executive Director! Ms. Peltz is a recent
graduate of Vanderbilt University with a Masters Degree in Human,
Organizational, and Community Development. She began her association with
ASMT in early 2005 as an intern, continuing afterwards as a staff member.
Amanda’s experience with children with Autism has given her an
understanding and empathy for the struggles these individuals and their families
face. “I am thrilled to have the opportunity to facilitate the growth of ASMT as we
move to a new level of service and support for the many families and individuals
in Middle Tennessee who are affected by autism,” says Ms. Peltz. “I truly could
not be more excited or proud to be a part of this team!”
Support, Education, Advocacy
The ASMT Board of Directors has a strategic commitment to strive for
excellence in three key areas: support, education, and advocacy. In each of these
areas, the chapter has a number of programs and initiatives, a few of which are
ASMT technically serves 26 counties in Middle Tennessee but has
established 32 “county contacts” throughout the state. These contacts are the “go-
to” resource on Autism in their respective localities and act as the “eyes and ears”
of ASMT in each community. The ASMT office staff work with them to make sure
they are up-to-date on chapter-wide activities. The county contacts give practical
information on topics ranging from schools to hairdressers who are particularly
effective at working with children with autism. These essential volunteers also
monitor availability of support groups or social groups in their area. In fact, many
of ASMT’s county contacts run support groups of their own.
In addition to the county contact system, ASMT operates an Autism
Information and Resource Center. This center houses the chapter’s library of
almost 1,000 books, videos, audio tapes, and periodicals. ASMT’s quarterly
newsletter, The Echo, provides information on autism, tips, and chapter updates
for members. And its website (www.autismmidtenn.org) stores a wealth of news
and practical information for people seeking information about Autism.
Community education workshops, focusing on autism-related topics, are
conducted monthly at the Vanderbilt Kennedy Center. In addition to this
monthly workshop series, ASMT provides law enforcement awareness training,
Autism awareness presentations in area schools, and bi-monthly Autism
Orientations. These free meetings in Davidson County are a key part of ASMT’s
community outreach. The orientation is a two-part presentation, jointly delivered
with professional and parent perspectives, that strives to help integrate families
with a newly diagnosed child into the local Autism community. ASMT has
recently “taken the show on the road,” delivering these orientations at remote
locations around the state of Tennessee.
ASMT representatives have worked on a number of boards, panels, and
workgroups dealing with a wide variety of autism and disability related issues on
both a local and statewide level. They are very excited about the passage of the
Autism Equity Act which was recently celebrated at a reception hosted by the
Vanderbilt Kennedy Center.
ASMT is dedicated to meeting the needs of the growing Autism
population. As it prepares a five year strategic plan, the Society is enthusiastic
about increasing the range of services provided for the community! With a new
executive director on board, the Society hopes to see its vision for the future
quickly turn into tangible services for the community. “We are proud of our
leadership in the Autism community, and look forward to continued growth as
we seek to improve the lives of all affected by Autism,” says Peltz.
ASMT Contact Information
• Phone: (615) 385-2077 • Fax: (615) 383-1176
• Email: email@example.com • Web site: www.autismmidtenn.org
• Address: 480 Craighead St. Suite 200
Nashville, TN 37204
Headline: A First Step Toward Full Coverage of Autism Spectrum Disorders
For years the parents of children with an Autism Spectrum Disorder
(Autism) have faced an uphill battle to get insurance companies to cover proven
therapies for the treatment of Autism. Often the therapies sought by parents were
already provided to children with other neurological conditions so the disparity
in treatment was even more frustrating.
In many cases, parents could not get the coverage their child needed
through insurance and the services provided in the school systems only scratched
the surface. As a result parents were often forced to pay out of pocket, sometimes
taking on great debt and financial risk, in order to finance routine therapies that
are absolutely essential in the first years after a child is diagnosed with Autism.
These routine therapies might include a mix of occupational,
speech/language, physical and behavioral therapies that have been around for
years. The importance of early intervention with these therapies has been
demonstrated by researchers across the country, including those in our own
backyard at the Vanderbilt Kennedy Center’s Treatment and Research Institute
for Autism Spectrum Disorders (TRIAD).
This problem has been addressed in a variety of ways across the country.
Some states have equated Autism with a mental health disorder and gained
coverage under mental health parity laws while other states have taken a more
direct approach by requiring straight coverage of Autism, usually with some limit
on benefits. In one case Georgia passed a law recognizing that Autism is a
neurological disorder and as such should be covered to the same extent as other
It was this approach in Georgia that caught the attention of parents and
leaders from the Autism Society of Middle Tennessee, the Tennessee Disability
Coalition, the Tennessee Association of Speech/Language Pathologists and
others. The simplicity of the Georgia legislation and the undeniable force of its
argument for equal treatment of Autism as a neurological disorder made it an
ideal model for a first step toward greater coverage of Autism in Tennessee, a
state where it has historically been extremely difficult to pass any legislation that
regulates the insurance industry.
In fact, the potential hurdles faced by the Autism Equity Act initially led
some to believe that it would take two years of work in order to get any
substantial legislation passed. Fortunately, that was not the case because the
parents of children with Autism as well as many medical professionals advocated
tirelessly this spring to promote the legislation. Many called their legislators and
some wrote very moving letters while others visited personally with legislators or
offered live testimony to legislative committees.
Sadly, the legislation did not pass entirely unscathed as its application was
limited to children 11 and younger. Perhaps in a future session legislators will
remedy this discrepancy so that coverage includes children through 18 years of
Thanks to those efforts as well as the dedication of lead sponsors, Senator
Jerry Cooper (Smartt) and Representative David Shepard (Dickson), the
legislation earned the support of dozens of legislative sponsors and passed both
chambers unanimously. Soon after, it was signed into law by Governor Phil
Bredesen on June 20th thus paving the way for many more children to receive
coverage for Autism next year.
In light of this success the Tennessee Disability Coalition would like to
offer it’s thanks to all the legislators who stood up for children with Autism and
sponsored this legislation.
Jerry Cooper (Smartt), Tim Burchett (Knox), Charlotte Burks (Monterey),Doug Jackson
(Dickson), Micheal Williams (Maynardville), Bill Ketron (Murfreesboro), Don McLeary
(Jackson), Tommy Kilby (Wartburg), Katheryn Bowers (Memphis), Lt. Governor John
Wilder (Mason), Jim Tracy (Shelbyville), Steve Cohen (Memphis), Raymond Finney
David Shepard (Dickson), Joanne Favors (Chattanooga), Richard Montgomery
(Sevierville), Charles Sargent (Franklin), Thomas DuBois (Columbia), Doug Overbey
(Maryville), Tre Hargett (Bartlett), Phillip Pinion (Union City), Gary Moore (Nashville),
Lois DeBerry (Memphis), David Hawk (Greenville), Curry Todd (Collierville), John
DeBerry (Memphis), John Charles Tidwell
(New Johnsonville), Willie Butch Borchert (Camden), Mary Pruitt (Nashville), Charlie
Curtiss (Sparta), Mike Turner (Nashville), Eddie Yokely (Greenville), George Fraley
(Winchester), Russell Johnson (Loudon), Beverly Marrero (Memphis), Stratton Bone
(Lebanon), Jim Hackworth (Clinton), Jimmy Eldridge (Jackson), Johnny Shaw
(Bolivar), Kent Coleman (Murfreesboro), Barbara Cooper (Memphis), Stacey Campfield
(Knoxville), Janis Sontany (Nashville), Gary Odom (Nashville), Harry Brooks
(Knoxville), Tommie Brown (Chattanooga), Mike McDonald (Portland), John Litz
(Morristown), Bob McKee (Niota), Paul Stanley (Memphis), William Baird (Jacksboro),
Bill Harmon (Dunlap), Sherry Jones (Nashville), Curt Cobb (Shelbyville), Chris Crider
(Milan), Bill Dunn (Knoxville), Edith Langster (Nashville), Dolores Gresham
(Somerville), Jerry Cooper (Cookeville), Leslie Winningham (Huntsville), Mark Maddox
(Dresden), Dennis Ferguson (Harriman).
Headline: The Autism Equity Act: Breaking It Down
The Autism Equity Act (AEA) represents a first step toward greater
coverage and better treatment of Autism Spectrum Disorders in Tennessee;
however, it is only a first step. It will provide greater access to therapies for many
children with Autism while parents and advocates continue to push for greater
levels of coverage in the years to come.
It is based on ideals of equity which demand that children with Autism
should have access to the same therapies provided to other children with
neurological disorders with no extra hoops to jump through for families.
Furthermore the law prohibits insurers from refusing to reissue or renew policies
solely because a child has been diagnosed with an Autism Spectrum Disorder.
Who is Covered
There are two primary considerations when determining who is covered:
1) the age of the child and 2) the type of insurance coverage. The legislation
applies to children through age 11 and it applies to private and group health
insurance policies, including state and local policies. However, it does not apply
to certain self-funded insurance policies regulated under the federal Employee
Retirement Income Security Act (ERISA). Policies of these types are outside the
reach of most state laws and it would take federal legislation to require coverage
If you are unsure whether your policy is covered by ERISA, then contact
your employer or health insurance representative. It is possible that if your policy
is not covered by the Autism Equity Act that you could petition your employer to
consider adding future coverage by citing the fact that Tennessee has recognized
that the therapies are legitimate and beneficial to children with Autism.
What is Covered?
The legislation expresses the legislature’s intent that coverage include
physical, occupational, speech/language, and behavioral therapies. Coverage
must include whatever therapies are already provided for other neurological
disorders and the level of coverage should be just as good as that provided for
other neurological disorders. Therefore if a child requires and a plan provides up
to 30 therapeutic visits for speech/language treatment of one neurological
disorder, then it must provide at least that much for treatment of a child with
In addition, parents should not have to pay more in deductibles or co-
payments for treatment of Autism than the parents of any other child with a
neurological disorder. And, as stated above, the limits on coverage such as the
number of visits or the types of therapy must be no more stringent that those
placed on the treatment of other neurological disorders.
What is Not Covered?
Coverage extends only to treatments that are provided for neurological
disorders generally, it does not necessarily require coverage of novel therapies or
therapies that have not been used to treat other neurological disorders.
When Does Coverage Begin?
The effective date for coverage will vary from family to family, policy to
policy. According to the legislation coverage, “shall be effective upon any
contract, policy, or plan which is delivered, issued for delivery, amended or
renewed on or after January 1, 2007.” This means that coverage does not
necessarily begin on January 1st, 2007.
Instead, coverage will begin immediately for new policies issued anytime
after January 1st, 2007 and for existing policies coverage will kick in after it has
been renewed which typically happens in the Spring or Fall. If you have questions
about when your policy will be renewed then speak with your employer or health
insurance representative. Of course, the legislation does not prevent an insurer
from providing coverage earlier if it chooses.
The Future of Autism Coverage in Tennessee?
It will take some time to realize the full impact of this law and determine
what steps may be needed to supplement it; however, we hope that in future
years the legislature will consider raising the age of coverage to 18 so that
children of all ages can benefit. Furthermore, families should be aware of federal
legislation that could impact laws such as the AEA. This spring federal legislation
was introduced that would have exempted an even greater number of insurance
policies from complying with not only the AEA but other state regulations as well.
In the coming years it will be crucial for families to document the
successes and shortcomings of the AEA as well as report problems to the
Department of Commerce and Insurance so that the Autism Community can
build a record of evidence to support future legislation. In addition, it will be
important to maintain and build upon the relationships that have been
established with state legislators who embraced this legislation and made it a
Headline: Whirling Through the Web: Web Accessibility Project Update
As reported in the Winter 2006 Coalition Quarterly, the Coalition initiated
a web accessibility project with funds received from the Southeast Disability and
Business Technical Assistance Center (SEDBTAC). The goal for the project was to
enhance the accessibility of Coalition member agencies’ websites to ensure that
individuals with disabilities do not encounter barriers in obtaining information
about the agencies’ services and supports.
What we learned is that several Coalition member websites already had
many accessibility features that ensured ease of use for people with disabilities.
Nevertheless, many of our websites had room to improve their accessibility and
as a result of the project we found a 7.76% increase in accessibility of Coalition
member agency websites.
This project will have an ongoing impact on individual agencies,
consumers, staff, and board members as these user-friendly sites are accessed. In
addition, these websites provide examples of how businesses and other
organizations can work toward greater web accessibility. Of course, we recognize
that “bona fide” accessibility is not established based upon a single evaluation or
set of criteria. Rather accessibility is an active, ongoing process that requires
vigilance to ensure true access and usability by people with disabilities.
Southeast DBTAC Web Manager Marsha Allen quoted Jeffrey Zeldman, a
leader in web design, “Accessibility is not the memorization of a set of rules, but,
like other aspects of design and usability, it’s something to think about. It’s
something filled with challenges. It’s something that intelligent and reasonable
people can disagree about. There’s more than one right way to do something.”
Web Accessibility Resources
Bobby Approved Not Always Accessible
Evaluating Web Sites for Accessibility
Guidelines for Accessible and Usable Web Sites: Observing
Users Who Work With Screen Readers
W3C Web Content Accessibility Guidelines
Headline: Tennessee Accessibility Act Updated
Last year, the 104th General Assembly revised the Tennessee Accessibility
Act (TAA) so that as of July 1, 2006 all buildings covered by the act which are
constructed, enlarged, substantially altered or repaired must be designed to one
of the following codes: a) the 2002 North Carolina Accessibility Code (NCAC)
with 2004 Amendments b) the Americans with Disabilities Act Accessibility
Guidelines (ADAAG) or all applicable Uniform Federal Accessibility
The statute was revised to keep Tennessee’s accessibility standards in line
with the currently enforced standards of the United States Department of Justice
(USDoJ). Tennessee Code Annotated 68-120-204 will not permit the substitution
of any other accessibility standard for any building or structure requiring review
by the Tennessee Fire Marshal’s Office. The 2002 NCAC with 2004 amendments
was formally certified by the United States Department of Justice on November
28th, 2005 to meet or exceed the requirements of Title III of the Americans with
Disabilities Act. If and when the USDoJ approves the July 2004 Americans with
Disabilities Act and Architectural Barriers Act Accessibility Guidelines (ADA
ABAG), then those may also be used when designing a covered building or
In May, the Codes Enforcement Section of the State Fire Marshal’s Office
in Nashville collaborated with the Tennessee Fire Service and Codes Enforcement
Academy in Bell Buckle, Tennessee. Through the collaboration, a five-day class
on the recently certified NCAC standards was offered and featured Ms. Laurel
Wright who was intimately involved with the USDoJ certification and is the Chief
Accessibility Code Consultant for the state of North Carolina.
For more information, go to
Headline: Americans with Disabilities: Ready for the Global Workforce
In 1945, ages before the ADA, Congress passed Public Law 176 which
established October as a month to recognize the contributions of Americans with
disabilities to the workforce and this year's theme is “Americans with Disabilities:
Ready for the Global Workforce.”
According to Roy Grizzard, Assistant Secretary of Labor for the Office of
Disability Employment Policy (ODEP), “This year’s theme reflects the fact that
increasing the opportunities for Americans with disabilities in the workforce can
produce far-reaching, positive results for employers.”
This is particularly important because employers will be looking to fill
many jobs that are now held by soon-to-be retiring baby boomers. Speaking at
the Harvard Club in New York City, Grizzard commented on this phenomenon,
“By the year 2014 – that’s only eight years away – 36 million people are expected
to leave their jobs and will need to be replaced."
To learn more about National Disability Employment Awareness Month
and find other resources on employment visit the Department of Labor’s web site
at www.dol.gov/odep To request a 20” x 30” or a 10” x 15” poster, send your
name, complete mailing address and number of posters needed to
firstname.lastname@example.org or call 202-693-7880.
Headline: The 2006 Tennessee Legislative Session: Taking Two Steps Forward
“Anything “Anything that’s worth having, is worth fighting for,” at least
that’s what many of us were taught by a teacher, our parents, or maybe our
grandparents. And if the 2006 legislative session is any indication, those words
still ring true today because it is clear that many of the burning issues within the
disability community are not going to be resolved in Tennessee without a lot hard
work, month after month, by people with disabilities and advocates who are
willing to engage our state’s legislative leaders on a regular basis.
This was never more clear than in the past legislative session. We saw two
very good bills become law thanks to the countless hours of work by parents of
children with autism as well as advocates for improved health care who were
constantly working the halls of the General Assembly.
The first bill is the Autism Equity Act. This bill will help level the playing
field for many children with an Autism Spectrum Disorder who previously were
denied insurance coverage solely because of their diagnosis and perhaps because
of the negative perception that nothing could be done to help a child with Autism.
This bill could not have been possible if it were not for parents and advocates who
made countless calls to their legislators, wrote personal letters and took time off
from work to visit personally with legislators during the session. The passion of
these parents helped open the eyes of legislators to an injustice that was
deserving of action and the legislators ran with it.
The second bill was known around the General Assembly as the
Odom/Jackson bill, named for its sponsors Senator Doug Jackson and
Representative Gary Odom. This bill tackled the problem created when TennCare
cut 67,000 uninsurables from the program in 2005. These individuals had few
options after TennCare, but thanks to this bill and $38 million that was
appropriated to support it, an estimated 20,000 to 25,000 people will have an
opportunity get much needed medical care again.
This bill had a much bumpier ride than the Autism Equity Act because of
its ties to TennCare and all the complications that entails. In fact, many
considered this bill and similar bills dealing with TennCare to be dead on arrival
with virtually no hope of surviving a minefield of committees, much less passing
and earning the Governor’s signature. This was truly a miracle piece of legislation
that could not have happened without a small army of volunteers, former
TennCare enrollees and advocates working with legislators who understood that
something had to be done to soften the blow of the 2005 cuts and it had to be
Together these bills demonstrate what can be done when people from
across the state band together, provide good information to their legislators, and
dedicate themselves to working a process that can lead to great results. These
bills represent successes that the disability community can build upon in
succeeding years if it continues to work together and remain dedicated to
enlisting the help of friends, neighbors and family who might not normally get
involved in politics. Its hard work, it can be demoralizing at times, but it is worth
In contrast to these successes, one backward-looking bill flew largely
under the radar until it was too late for a groundswell of opposition to develop. So
with little opposition or scrutiny this bill, known only as SB2958/HB3026 passed
easily through the General Assembly.
Sadly, it sets back the Mental Retardation community and years of work by
a multitude of organizations and people with disabilities who want to move
Tennessee beyond its reliance upon institutions to less costly, more empowering
home and community-based services (HCBS).
Furthermore, it flies in the face of a Joint Resolution passed just last year
which recognized the General Assembly’s commitment to moving beyond
“institution first” thinking about people with disabilities. As a result this bill
ensures that for the next few years people with MR can expect the state to
continue focusing on institutions – of any size – rather than dealing with the very
real problem of expanding less costly HCBS offerings for people with MR so that
they might move back into the community, regain a sense of independence and
have a say in their own lives. For more on this bill see the side bar titled “Taking
One Step Back.”
As for the rest of the legislation session, it was a mixed bag with some
successes and failures that are outlined below.
• Businesses that provide parking for persons with disabilities must now also
provide van accessible spaces. (HB2670/SB2622)
• For the second year in a row the legislature failed to move on a bill that would
essentially apply federal election standards for accessibility to purely local
elections as well as incorporate people-first language into the Tennessee Code
and give citizens with disabilities greater voice in our state’s election policies.
• Legislation dealing with mental health screenings in public schools raised
concerns that it might prohibit screenings that would identify youth who need
assistance. The House Health and Human Resources committee deferred action
on the bill until it is reviewed by a summer study committee.
• One bill would have clarified and reinforced the rights of parents in special
education due process hearings under the Individuals with Disabilities Education
Improvement Act. It was recommended for passage in the Senate, but there has
yet to be a vote and on the House side it remains in an Education subcommittee.
• The Tennessee Affordable Drug Act was amended to clarify that it does not
prohibit a pharmacist from filling a patient's request for a brand name drug, if
the patient has prescription drug coverage and is willing to pay any additional
cost to receive the name brand. (HB3065/SB3070)
• Legislation authorizing the Administration to develop a Medicaid waiver for
individuals with brain injuries stalled in the Senate General Welfare, Health and
Human Resources Committee although it was recommended for passage to the
House Finance, Ways and Means Committee. (HB2913/SB3570)
• A Joint Resolution supported by NAMI was passed that urges the Governor to
develop a comprehensive fiscal analysis of revenue and expenses relative to both
adults with Severe and Persistent Mental Illness and children with Severe
Emotional Disturbance. The data would serve to inform future programming in
those and related areas. (SJR614)
• Created a task force to conduct a statewide study of the needs of people with
developmental disabilities other than mental retardation for whom
comprehensive home and community-based services do not exist and to develop
a plan to provide cost-effective HCBS for them. (HB2844/SB2766)
• The Community Choices Act would have made it easier for many individuals
who live in institutions to transition to home and community-based services. This
bill passed the Senate unanimously, but action in the House has been deferred.
• Counties and municipalities may now appropriate funds to provide property tax
relief to seniors, people with disabilities and veterans with disabilities who are
• The fog in the legislature will now be lifted thanks to long overdue legislation
that will prohibit smoking in the capitol. (SB3368/ HB3269)
Headline: Taking One Step Back
Tennessee has a cap on the number of private Intermediate Care
Facility/Mental Retardation (ICF/MR) institutional beds permitted in the state.
One indirect benefit of the cap is the pressure it places on the state to develop
home and community-based services (HCBS) so that individuals with mental
retardation might have a chance to live on their own with whatever supports are
necessary and appropriate. However, recent legislation was signed into law that
raised this cap by permitting private providers to add forty ICF/MR beds per year
for four years and greatly increases the chance that even more beds will be
approved in the future thus reducing the state’s incentive to move toward greater
use of HCBS for people with mental retardation.
Among other problems with the law:
• Most perplexing the law puts the cart before the horse by creating a task force to
study the “future need for ICF/MR services” while at the same time approving
160 new beds before that task force has had an opportunity to meet much less
issue a report which establishes any need for 160 additional beds.
• Furthermore, the task force’s instruction to study the future need for ICF/MR
beds fails to include an instruction to also study the related need for improved
access to HCBS and transitioning to those services. In other words, it continues
the state’s “institution first” mentality.
• The law also establishes who shall sit on the task force and makes absolutely no
provision guaranteeing that a single person with mental retardation will have a
seat on the very task force that will determine the fate of hundreds of individuals
with mental retardation.
• In addition, the composition of that task force almost guarantees that it will
recommend continued reliance upon ICF/MR institutional beds and perhaps
even greater increases in the number of ICF/MR beds in Tennessee.
• Supporters of the law unwittingly reinforced the false perception that the new
ICF/MR facilities would be a positive alternative to developmental centers just
because they are smaller and cheaper. The fact remains that an institution is still
an institution no matter its size or decoration. Further, it neglects the fact that
expanded HCBS would be cheaper and offer freedom that no ICF/MR could
• Perhaps most disturbing, passage of this new law revealed that far too many in
state government do not realize that choice and control over one’s life is as
important to people with mental retardation as to anyone else. This law and
efforts to pass it only reinforced the outdated notion that people with mental
retardation are incapable or undeserving of self determination and should be
content to let the state or others make decisions for them.
Headline: Getting Out The Vote: POWER-INFLUENCE-PROGRESS
What do these three words have in common? They all result from voting
and voting on a consistent basis. They all come about when a segment of the
population like people with disabilities become a reliable voting block whom
candidates of all parties must take seriously.
One need look no further than the nightly news to witness the importance
of voting blocks. On any given night you might hear a news anchor or
commentator say, “Republicans introduced a new initiative to reach out to
Hispanic Americans this week” or perhaps “Democrats today lauded a program
that will strengthen their support among soccer moms.” And, of course, every
party – without exception – reaches out to our senior citizens because studies
have shown that our seniors are among the most consistent, dedicated voters in
the country. It is no coincidence that the AARP holds such sway nationally.
But what about people with disabilities? How often do we read stories in
the newspapers or see news reports about the clout of people with disabilities or
how a great percentage of people with disabilities might favor this candidate or
policy over another? How often do we hear the media or political parties tracking
the views and leanings of people with disabilities?
Many would find it difficult to believe that a segment of voters that make
up 20% of the United States population could be overlooked so easily by the
media and political leaders; however, that is the reality we face because people
with disabilities have traditionally voted at rates well below the national average.
This is unfortunate because people with disabilities make up a very unique
segment of the population. People with disabilities are perhaps more
representative of the general population than any other minority or voting block.
People with disabilities are young and old, black and white, rich and poor. They
are liberal, conservative and everything in between. If a candidate can win a
significant cross-section of people with disabilities, then he or she can truly
appeal to the great mainstream of Americans that ultimately decides the outcome
of an election.
This is why it is so important for people with disabilities and organizations
that support people with disabilities to focus not only on improving access to the
polling place, but also participation in elections. This is why it is increasingly
important to dedicate time and resources to voter registration and Get Out the
Vote efforts, especially if you can document the increases in participation that
result as the Coalition has done in years past.
The fact is that getting out the vote is a relatively straight forward process.
It’s a matter of taking a few hours of time to make phone calls in the weeks
leading up to an election, mail out reminders to vote, and help people who might
have difficulty getting to the polls find transportation. Not exactly rocket science.
However, no one organization in Tennessee or across the country can do it
alone and there are efforts nationally to increase voter participation by people
with disabilities as well as efforts to strengthen and grow cross-disability
coalitions across the country.
Disability Vote Alliance is Born
This spring representatives from disability vote campaigns from across the
country met at Gallaudet University in Washington, D.C. to discuss past efforts to
improve voter registration and turnout as well as ways to improve future efforts.
Out of that meeting came a commitment to develop a national voting alliance
with the following mission:
“The Disability Vote Alliance (DVA) mission is to maximize the voting
strength of Americans with disabilities through nonpartisan voter education,
registration and mobilization efforts. Our Alliance seeks to expand the
involvement of people with disabilities and other community advocates across all
levels of the electoral process to ensure that elected officials are responsive to the
needs of the disability community at the local, state and national level.”
Among the first steps taken by the organization is a voting list
enhancement that will enable state voting campaigns to update their databases to
include information about the voting habits of people with disabilities, both
before and after the fall elections. This information will help states organize Get
Out the Vote campaigns, improve voter registration activities as well as document
– on a state and local level – the recent rise in voting rates among people with
disabilities, an increase that should continue as more accessible machines are
introduced across the country this fall.
National Coalition for Disability Rights
Complementing efforts by AAPD and DVA to improve participation in the
political process is a year-long “American Dream Road Tour” that will launch on
October 25th in Washington, D.C. The road tour will include an RV that will
travel to every state in the nation including stops in Nashville and Memphis in
late 2006 or early 2007.
The tour will highlight the Americans with Disabilities Act (ADA) and the
history of the disability rights movement including the ongoing struggling for
equal access to healthcare, transportation, education and employment. In
addition the tour will provide support and recognition for state cross-disability
coalitions that are key to advocating for and engaging people with disabilities in
the political process.
For more information, check out the fall edition of the Coalition Quarterly
in November or visit www.adawatch.org/AmericanDream.htm.
Building a Voting Block: How You Can Help
This fall, organizations and individuals across the state, both partisan and
nonpartisan, will be organizing Get Out the Vote Campaigns and the disability
community cannot be left behind. That’s why the Tennessee Disability Coalition
is asking for your help to organize a nonpartisan calling center in your
community for one or two nights in October or early November.
Why Is This Important?
Historically, only about 33% of the people with disabilities vote compared
to just more than 50% of the general population. However, 41% of voting aged
citizens with disabilities voted in the 2000 presidential election, thanks in part to
Get Out the Vote activities. In some Tennessee communities the increases were
even more dramatic.
How You Can Help
Can your organization secure a site with a dozen telephones and a dozen or
more volunteers for a few hours one night in October? Could you do it with a little
help from the Coalition? If so we can provide calling lists of Tennesseans with
disabilities in your community as well as scripts and other support to make your
event a success.
After the elections we help quantify the success of your efforts and let local
leaders know the impact that your organization and voters with disabilities made
in the 2006 elections.
For more information contact Todd or Courtney of the Disability
Coalition’s VOTE! Campaign at 615-383-9442 or by e-mail at