TABLE OF CONTENTS
InFormation – What Brings You to the Table? ................ 4
Advocacy – It‘s all about the Individual ......................... 5
Benefits that Really Work .............................................. 5
Family Voices – A Place for Answers ............................. 6
The Coalition’s ADA Project .......................................... 7
In the Arena – Public Policy at the Coalition ................. 8
Project BRAIN – One Family‘s Experience .................... 9
The Coalition’s Earliest Days ....................................... 11
Through the Years – The Tennessee Disability Coalition ...12
The Disability Coop – Ahead of its Time ..................... 15
Member Organizations – Bringing Together a Variety
of Disability Interests............................................... 17
From a Coalition Stalwart – My View of the World ..... 22\
Coalition Quarterly Credits
Special thanks to our contributors: Tom Hopkins, Wanda Willis, Amanda Peltz, Dara Howe, Bob
Kibler, Joe Marshall, Jackie Page and many others. Thanks to Jessica Dockter of L.E.E. Designs
for the new Disability Days on the Hill logo, www.leedesign.org as well as Permobil for supporting
this special issue. Opinions expressed are not necessarily those of the Coalition and its Members.
The Coalition Quarterly is published by the Tennessee Disability Coalition about four times a year.
The Coalition Quarterly may be reprinted with the permission of the Coalition, headquartered at 955
Woodland Street, Nashville, TN 37206. Telephone (615) 383-9442, TTY (615) 292-7790, Fax (615) 383-
You to the Table?
As I look back over the years at unique gifts that so many people have brought to the Coalition, it
is easy to see just as many unique and personal stories about what brought people to disability
advocacy. Some were born with disabilities and their lifelong experiences led them to advocacy
and leadership. Some began in community service only to discover career opportunities and
fulfillment working in the disability field. One of the most common experiences that leads
someone to advocacy is that of becoming disabled and being confronted with a whole new world,
not of your choosing. For the ―personalities‖ feature of this issue, we asked Louise McKown to
write a bit about herself. Here is what she told us about what brought her to the table. ―I hate that
every time I have a story done about me, they talk about my disability at length. My disability is
what got me in this business. Who knew that when I spoke out at a forum on health care, wrote a
letter to the editor, and had a friend from high school write an article about me in a local paper,
that all this would actually land me a job! It is great to actually get paid to speak out about issues
that really matter to me and other people.
Though I get paid to do public awareness about assistive technology, I can‘t help but get involved
in issues where I have personally experienced discrimination or hardship such as health care,
ADA physical plant issues, and hassles with getting into a friend‘s home or the fear that I may
have to endure life in a nursing home some day. Sometimes I can stretch the definition of
assistive technology to actually have some of this work be part of my paid job. There are times I
say I am having so much fun, I wonder why anyone pays me, but then when I don‘t get enough
sleep from covering more issues than I should, I know why. It is very hard to cover all the issues
surrounding people with disabilities. The great thing about the Coalition is that they have let me
dabble in issues of importance to me. It has also widened my eyes about other people‘s lives that
I never knew existed before I acquired my disability, so occasionally I can say something
knowledgeable about their needs as well. Change doesn‘t come easily or quickly, but if you keep
at it long enough and find some partners, progress does occur. If anything, I have learned how to
be patiently persistent.‖
Throughout its history, the Coalition has developed wonderful relationships with an untold
number of personalities who have contributed not only to the Coalition, but to the larger disability
community. On the pages of this issue we spotlight just a few of the many.
Arc of Tennessee
Blue was executive director of the Arc of Tennessee from 1975 until his death in 1997.
He came to Tennessee from Spokane, Washington where he began his career in the
field of mental retardation in 1967 as executive director of the Spokane Association for
Retarded Citizens. During his 30 year career with The Arc Roger was highly regarded by his
peers. His long time colleague and friend, Paul Marchand, director of the Governmental Affairs
office for The Arc of the U.S., delivered the eulogy at Roger‘s memorial service. He cited Roger
as a ‗forceful advocate‘ who worked to make sure that policies and funding fostered self-
determination and independence for all people with mental retardation. The Arc of Tennessee
established the Roger Blue Memorial Award as their highest award, given at The Arc‘s discretion
to a deserving individual. Roger is recognized as a catalyst behind the Tennessee Disability
Coalition, formed in the late 80‘s as the Coalition for Communiity Services.
Advocacy – It’s all about the Individual
The Coalition‘s Advocacy program provides specialized advocacy services to individuals with
intellectual disabilities who have left, or are leaving the state‘s institutions. The program came
about in 1996 when the Coalition was recruited by the state to get Tennessee into compliance
with a Federal Court‘s Remedial Order involving a lawsuit to protect the civil rights of residents
of the Arlington Developmental Center.
Later Advocacy services expanded to class members covered by the Settlement Agreement
entered by the United States District Court in People First v. Clover Bottom for the Middle
District of Tennessee. Presently, there are 18 advocates providing advocacy services to nearly
700 individuals in West and East Tennessee. For more information about the Advocacy program
contact Donna DeStefano at (615) 383- 9442 or by email at email@example.com. You can
also find more information about the program and read other stories in the Summer 2007 issue of
the Coalition Quarterly.
Throughout the years, the Advocacy staff has worked to reunite clients with family
members. For example, ―TD‖ moved from Arlington Developmental Center in the
spring of 1997. She dreamed of being reunited with her family. Her advocate worked hard to
locate TD‘s family and through many inquiries eventually located the wife of a Rabbi who
remembered the family and shared information about TD‘s move from overseas, life in
America, and admission to the developmental center. Through those leads the advocate located
and contacted some of TD‘s family. Shortly afterwards, TD met her brother (also a Rabbi) who
was living in Chicago and who never knew of TD until he was 13-years-old. Today, the brother
and other siblings frequently visit with TD. As a result of being connected with her biological
family, TD is now involved with the local Jewish synagogue and enjoys her cultural heritage.
Benefits that Really Work
Like so many others receiving disability benefits from Social Security, Camille was unsure about
her ability to return to work after learning to live with the effects of her brain disorder. She sought
assistance through many support systems. Several partners, including the Tennessee Disability
Coalition‘s Benefits To Work Project, enabled her to complete her education and find a job in her
chosen profession. Camille received assistance from Tennessee‘s Division of Rehabilitation
Services. Her VR counselors, Audrey Hughes and Tammy Plemmons, worked to develop an
Individualized Plan for Employment (IPE) so there was a clear path to employment. Camille
eventually completed coursework and earned an Associate‘s Degree in Health Information
In addition, Camille worked with the Benefits To Work staff to plan for her transition from
SSA‘s benefit rolls. Tim Benthal, Community Work Incentives Coordinator, made sure that
Camille understood all work incentive options available and how each one would help with
employment. In addition Tim helped Camille identify and maximize SSA‘s work incentives
by untangling the web of often confusing and complex rules.
Camille decided to assign her Ticket To Work to the Division of Rehabilitation Services so she
would be afforded protections from medical reviews while she completed her training. Once
Camille was working, the Division could also recover some of the money used to provide
Camille‘s services, making the Ticket To Work a responsible way to use public funds.
Camille completed training to become a medical transcriptionist and began working at a level that
soon disqualified her from cash benefits for more than a year. She continues to use SSA‘s
Extended Period of Medicare Coverage work incentive. She says all the help she received “has
given me my life back. I can give back to society as a functioning member.” To learn more about
the Benefits to Work program visit it on the web at www.tndisability.org/benefitstowork or call
toll-free (888) 839-5333.
A Place for Answers
Countless families across Tennessee are looking for answers about services and supports for their
child with a special health care need or disability. Many have found help through the Family to
Family Health Information Centers, a program of Family Voices of Tennessee. In some cases
families have found help getting their child‘s health care needs met at school, or perhaps been
able to have their child treated in the best facility for the child rather than a facility that is more
convenient for the MCO. Families have been assisted in finding transportation, medical care, and
other supports. More importantly, families have found a place to voice their feelings and
frustrations about issues they face due to their child‘s illness or disability.
One Family’s Story
When Shelia Sneed and her family moved to Tennessee from Kentucky she never dreamed what
she was leaving behind. Quickly she learned that the array of supports for her daughter Bree were
not available here. Struggling to make it day to day she came across Family Voices. Shelia
expressed a need for personal assistance for her daughter whom has severe Cystic Fibrosis,
seizures and other health issues. Without any outside help Shelia and the rest of her family were
confined to their small home to care for Bree. Shelia found solace in being able to speak to the
family resource specialist as often as needed to discuss possible solutions to both on-going and
new problems. Over the last year, with support from Family Voices, Shelia has been able to
locate and build a relationship with a doctor who has prescribed many needed therapies and
supports for Bree. Shelia was also put into contact with TN Voices for Children who were able to
provide her with some limited respite services for both of her children. In addition to just getting
on the DMRS waiting list, Shelia has advocated her needs and now Bree is listed as crisis - and
has received Consumer Directed Funds to help with needed supports while she waits. Because the
family lives in rural Robertson County service providers are often difficult to locate. Family
Voices has assisted Shelia in finding out-of-network providers and collaborated with TennCare to
find timely solutions for services. One support that Bree‘s family needs is more room to care for
her. Shelia and the FV staff have worked to find creative solutions in her own community.
Although this is an ongoing job, Shelia feels that FV has helped many people in her community
look at children with disabilities differently. ―Family Voices has helped many people look at how
they can help in different ways than they may have thought about before, and they have helped
pull together different community groups to work as a team to help our family,‖ Shelia said. ―I
appreciate all the help FV has given me.‖ To learn more about Family Voices call toll-free (888)
643-7811 or visit us on the web at www.tndisability.org/familyvoices.
The Coalition’s ADA Project
Throughout the years, the Tennessee ADA Leadership Network has impacted thousands of
people in Tennessee, including individual employers, businesses, public accommodations, and
people with disabilities and their families in order to promote compliance with the requirements
of the ADA throughout our state. As a result of the strength and commitment of the members of
this network there have been some key changes in public policy here in Tennessee. But perhaps
more importantly, some fundamental changes to the accessibility of communities all over the
state. As a result of the training and technical assistance provided by the network, employers,
local governments, retailers, restaurants, and other businesses are more welcoming to people with
ADA Project History
In September 1992, two years after the signing of the ADA, the Developmental Disabilities
Planning Council (currently the Council on Developmental Disabilities) funded the Coalition‘s
first ADA Project. Sharon Hazard was the coordinator of the project which was based in
Knoxville and housed at the East Tennessee Special Technology Access Center (currently the
East Tennessee Technology Access Center). The purpose of that project was to identify ADA-
related resources and services, to provide statewide coordination of information about those
resources, and to develop a resource directory.
Representatives from major stakeholder groups served on a statewide coordinating committee
which had the first meeting in Nashville on October 14, 1992. Initially, Sharon, along with three
other people – Kathy Fletcher, Michael Gibson, and Tim Craven – completed comprehensive,
week-long ADA training sponsored by The Disability Rights Education Defense Fund (DREDF).
Following that training, the Coalition held a two-day ADA workshop for groups of consumers
and parents in January 1993. In 1993, the Coalition and the Southeast Disability and Business
Technical Assistance Center (DBTAC) established a relationship which continues to this day. On
May 12, 2005, the DBTAC and Coalition cosponsored a ―train the trainer‖ workshop on the ADA
for interested persons conducted by Linda Priest of the DBTAC and Sharon Hazard. As the
Tennessee ADA Leadership Network was established, the Coalition has had contracts with a
number of agencies which provided a mechanism to disseminate accurate, timely information on
the ADA to stakeholders; provide training and technical assistance related to the ADA; and
encourage voluntary compliance with the ADA. Although funding cuts impacted these contracts
last year, the Coalition is currently working to re-establish contractual relationships with this
network. To learn more about the network and resources in your area contact Donna DeStefano at
(615) 383-9442 or by email at firstname.lastname@example.org
JOE MARSHALL – PARENTS
Joe is the father of Jo Ann, an adult with autism; and he is a Board member of the Tennessee
Disability Coalition representing the Parents Association for the Rights of Educating Non-
Traditional Students (PARENTS), an East Tennessee advocacy organization. Joe has been a
board member of the Coalition since its inception. Originally he served as board member
representing the Autism Society of America - Tennessee. Joe first became involved in advocacy
for persons with disabilities when Jo Ann was very young and has remained so. He helped start
the Autism Society of America (ASA) – East Tennessee Chapter and the ASA – Tennessee. He
also serves on the statewide TDMHDD and DD Planning and Policy councils.
In the Arena – Public
Policy at the Coalition
Empowerment is at the heart of the Coalition‘s public policy programs. It‘s one thing for staff to
advance positive legislation and public policy, but it is something else – something quite special –
to help a family advocate for a child or arrange for local residents to meet with a legislator for the
first time so they can tell their stories. The Coalition public policy program seeks to engage
people locally at a grassroots level by providing the tools, training and guidance to help political
novices learn how to positively impact public policy. Early efforts focused on voter registration
and improving polling place accessibility through the VOTE! Campaign because the right to
vote is the foundation for all other efforts. More recently, the Coalition has focused on increasing
opportunities for one-on-one relationships between people with disabilities and their legislators
by supporting three weeks of Disability Days on the Hill (DDH) each spring. 2008 will mark the
second year of this expansion and we hope to see even more families and people with disabilities
come to Nashville to visit with their legislators. In fact, the Coalition hopes to arrange some local
meetings with legislators in the months leading up to DDH as well. For more information about
DDH 2008 contact Courtney Jenkins-Atnip at email@example.com or see the back
cover of this issue for 2008 dates. Finally, as the spring session approaches the Coalition
continues to seek out individuals across the state who are willing to make an occasional phone
call or write a letter to their legislators on a variety of disability issues as part of a Disability
Action Network. We can provide the background and support for contacts, if you can offer a few
minutes of your time.
This spring the Coalition and many of its partners will be focusing on several pieces of legislation
of interest to the entire disability community as well as monitoring other legislative
developments. These legislative efforts will include: reforming restraint and seclusion practices in
the schools ensuring that health insurance protections related to cancer screenings, autism
coverage, diabetes care and more are not eliminated from the Tennessee Code addressing waiting
list issues for person with DD/ID improving home- and community-based services, and much
more. For more information about how you can help with any of these efforts contact Todd Hash
Technology Access Center
Bob is a co-founder and executive director of the Technology Access Center in Nashville which
opened in 1989. He has worked for over 35 years in special education, disability resource and
rehabilitation programs. His work has focused on developmental disabilities, early intervention
for children from birth through age 6, and assistive technology services for children and adults
with disabilities. He has a master‘s degree in Special Education, with an emphasis in the area of
cognitive disabilities. Bob previously served as a member and president of the board of directors
for the Alliance for Technology Access, the national organization of which the Technology
Access Center is a member. He currently is a board member with VSA arts Tennessee.
Project BRAIN – One
The Tennessee Disability Coalition and the TBI Program established a partnership in July of
2000 with a shared goal of improving educational outcomes for students in Tennessee with
traumatic brain injuries (TBI). With funding from the Health Resources and Services
Administration‘s Maternal and Child Health Bureau and Tennessee‘s TBI program,
Project BRAIN was developed to address the issues around identifying and supporting these
students in school.
One Student’s Story
Kelly McKaig, an east Tennessee mom, first learned of Project BRAIN three years ago and
contacted Jennifer Jones, East TN Resource Specialist, about her son Jesse. Kelly and Jennifer
arranged a time to meet in preparation for a Brain Injury 101 session for her son at Jesse‘s school.
Kelly had been diligently researching brain injury to broaden her own understanding of Jesse‘s
disability. Kelly felt that to understand Jesse‘s brain injury she needed to educate herself about
the brain and how typically developing children learned. She found some of the best information
at approved medical websites and books written by educators and other professionals on
Kelly’s advice to other parents:
• gain a basic understanding of brain anatomy,
• understand the specifics of the individual‘s injury (the site and severity),
• learn about the normal brain functions of the affected brain location(s), and
• compile all of the tests and evaluations from the doctors.
She created a notebook that outlined a history and timeline of Jesse‘s experiences with helpful
details from her own research for his teachers. This type of tool can give the parent the unique
ability to help the teachers and other school professionals educate and support their child. Jesse
was in a developmentally delayed pre-K class at the time of the school‘s first Brain Injury 101
training. The session prompted teachers to ask questions and learn more about the brain‘s
functioning and how Jesse‘s disability would affect his ability to learn. The following year his
teacher showed an interest in learning more about brain injury. After coordinating and planning
among Jennifer, Kelly, and Jesse‘s teacher, the three co-presented a training workshop. Based
upon Jesse‘s notebook, the training involved each participant making his or her own mini-brain
injury resource book. Today, Jesse is a third grader with a wonderful aid and teacher. He is
functioning at a third grade level in most areas although he has an assistant to help him stay
focused and on task. He is becoming more independent every day with the help of his assistant
and teachers. In fact, Jesse loves to use the computer and has taught himself how to surf the web.
Kelly has continued to be a supportive mom to his teachers, offering information and most of all,
communication. Her readiness to share the things she has learned with the school has provided
Jesse with a team of family and teachers who collaborate to support him. Kelly is currently
pursuing a Masters degree in Speech Pathology. Kelly, Jesse, his brother Sean, and father Steve
are all looking forward to their family‘s future. Looking back, Kelly found that Project BRAIN
was particularly helpful in bringing a ―professional‖ atmosphere and support system to the
teachers and staff at Jesse‘s school. The ongoing cooperation between a determined mother,
teachers willing to go the extra mile to help a student with a TBI and Project BRAIN staff
contributed to Jesse‘s successful inclusion into a regular education classroom, which has been an
integral component of his progress and growth.
For more Information:
Paula Denslow, Project
Jennifer Jones, Ed.S., CRC, CBIS
Brain Injury 101: Supporting
Students with TBI – A free, 2-hour training for schools, families, healthcare professionals, and
related service providers.
Partners in Communication: Supporting Students, Hospital to Home to School – A new
training piece specifically for hospital staff.
Currents – Our newsletter with project updates, resources and related information about TBI,
locally and nationally.
Project BRAIN CD and Website – This tool guides the user through a virtual schoolhouse with
each ―room‖ providing information about supporting students with TBI in the educational
environment. The CD is accessible from each page of our website at
Resource Teams – Team Members act as consultants for school systems by providing basic
training and resources to colleagues and families. Resource Teams can be found in the following
counties: Carroll, Hamilton, Hardeman, Henry, Jackson- Madison, Knox, Maury, McNairy,
Metro Nashville, Murfreesboro City, Putnam, Rhea, Roane, Rutherford, Sevier, Shelby, Sumner,
Wanda was assigned to a special education classroom, purely by chance, for her junior year
college internship. Today, she realizes how lucky she was to have been assigned that internship.
Since then, she has worked in the disability field, first as a special education teacher (her favorite
and most memorable work), then as a school psychologist. She has held a variety of positions in
community services for the Division of Mental Retardation Services since moving to Tennessee
in 1977, and has been the executive director for the Council on Developmental Disabilities for
more than 15 years. (Adapted from a Vanderbilt biography.)
The Coalition’s Earliest Days
The very first meeting to talk about ―formalizing‖ the Coalition took place in 1988. The meeting
meant to provide greater structure and momentum to the emerging Coalition. As part of that
meeting a group of four disability organizations was convened by Roger Blue, executive director
of the Arc of Tennessee, who was truly the founder of the Coalition. Prior to these discussions,
Roger had returned from a national Arc conference in 1988 where the national disability
coalition, the Consortium for Citizens with Disabilities, was encouraging state level disability
organizations to form coalitions around areas of mutual concern and pooling resources to
accomplish our goals. The four agencies first convened as the ―Coalition for Community
Services‖ were the Arc of Tennessee (Roger Blue), United Cerebral Palsy of Middle Tennessee
(Pat Huber), the Autism Society of American – Tennessee (Joe Marshall), and the Developmental
Disabilities Council (Wanda Willis).
The First Three Years
The four organizations decided that our first task was to see if we could reach consensus around a
shared vision. Though our organizations represented distinct constituent groups, did we have
similar goals? We did produce a vision statement and a list of shared values that year, with
community services being the predominant theme. In 1989, the Coalition members decided to
approach the Council to fund a coalition staff position to coordinate coalition-building activities.
The Arc of Tennessee and The Arc of Davidson County submitted a grant application to the
Council that was funded in July 1990. The Arc of Davidson County provided the required
matching funds. Over the next year, a corporate charter was filed, a mission statement was
developed, a membership brochure was drafted, by-laws were adopted, a steering committee was
developed, and topical task forces were set up to address issue areas. On November 1, 1990, our
first executive director was hired – Carol Westlake!
In addition, the number of member organizations grew to ten that year, including People First of
Tennessee, the League for the Hearing Impaired (now League for the Deaf & Hard of Hearing),
the Community Rehabilitation Agencies (now TNCO), and several local Arc chapters. The first
issue that the Coalition undertook was promoting state Family Support legislation, which was
drafted and lobbied in 1991 by Coalition members and staff, and passed by the Tennessee
General Assembly in 1992. Also in 1991, the Coalition received a grant from the Council to set
up a regional disability public awareness network, with nine public awareness liaisons. The
project was headed by Dara Howe, who generated public awareness materials and support for
local events on a regular basis as well as coordinated efforts of the nine regional liaisons.
Way, Way Back When
Prior to the formal creation of the Coalition in 1988 there was an informal adhoc group of
disability leaders, led in part by Roger Blue, Joe Marshall, and others. This pre-cursor to the
Coalition dated back to 1984 and met periodically to discuss, share information, and plan around
a wide range of issues affecting persons with all types of disabilities.
Through the Years – The Tennessee Disability
1984 An informal, adhoc group meets to discuss a wide variety of disability issues. Within
four years the informal group takes the name Coalition for Community Services and begins
discussions about funding in 1988.
1988 through 1989 Partners come together to formalize the Coalition for Community
Services as the new Coalition for Tennesseans with Disabilities to better reflect its mission.
1990 The Coalition receives its first funding from the Council on Developmental Disabilities
and a home at the offices of the Arc of Davidson County. The Coalition hires its first Executive
Director, Carol Westlake, and begins work toward creation of a family support program.
1991 Developmental Disabilities Awareness day at General Assembly. This marked the first
time that individuals and families with disabilities of all types joined together to visit the general
assembly and raise awareness of our community. Within a year it became known as Legislator
1992 Established a statewide ADA Network to provide technical assistance and training. This
partnership began with support from the Council on Developmental Disabilities and the Southeast
Disability and Business Technical Assistance Center.
Family Support Act - The Coalition‘s first legislative effort. The bill was written by our family
and personal assistance task force. It represented the first cross-disability program and the only
community-based service required by statute in Tennessee.
1993 Founded Family Voices of Tennessee which was followed with additional funding in
1997 to establish one of the first family-governed and operated health information centers in the
1994 Successfully fought an effort that would have weakened TN‘s Special Education Laws
1995 Chartered a bus so that families and consumers could visit DC for the “Promises to
Keep” national rally supporting the IDEA and ADA.
ADA Town Hall Meeting – More than 100 people with disabilities, family members and
professionals gathered in Nashville to provide testimony on the impact of the ADA on their lives.
1996 The Disability Coop was established as the Coalition moved into its own office and
member organizations voted on July 1st to become the Tennessee Disability Coalition. Governor
announced plans to do away with DMHMR – the Coalition organized the opposition and won a
two year struggle!
1997 The Commission on Compliance and DMRS tapped the Coalition to establish an
advocacy program to protect the rights of Arlington Developmental Center residents who were
leaving or had left the Center as a part of a lawsuit.
1998 The Title 33 Law Revision Commission was convened with input from more than 1,000
people. A major outcome was the expansion of the law to include people with developmental
disabilities other than mental retardation.
2000 Family Voices of Tennessee becomes the first state chapter of the National Family
Established Project BRAIN with the goal of improving educational outcomes for students in
Tennessee with traumatic brain injuries.
2002 Launched the VOTE! Campaign to improve polling place accessibility, increase voter
registration, and grassroots advocacy. Family Voices of Tennessee opened one of the first Family
to Family Health Information Centers in the country.
2003 The Coalition took the Tennessee Mental Health Consumers‘ Association under its wing
and helped it grow into a vibrant, statewide organization.
2004 In January, The Supreme Court heard oral arguments in Lane vs. Jones and ruled in their
favor in May. Coalition staff was present to hear oral arguments and support an ADA Rally.
TennCare Advocacy – Organized at the grassroots level and partnered with other community
groups to promote the reform of TennCare without taking away basic standards of Medical Care.
2005 Provide leadership for the TennCare Saves Lives Coalition. Its advocacy efforts included
town hall meetings across the state and culminated in ―The Drive to Save Lives,‖ an ambulance
tour designed to help save TennCare.
2006 Work Incentives Planning and Assistance program launched in cooperation with the
Center for Independent Living of Middle Tennessee. The Governor signed the Autism Equity
Act into law. Worked with national partners to launch the Disability Vote Alliance.
2007 Re-launched Legislator Awareness Day as a three week event titled ―Disability Days on
the Hill.‖ Sponsored four ADA Road to Freedom stops in Tennessee– more than any other state
in the nation. The Coalition moved into its new home at 955 Woodland St.
Through the Years –
More Coalition History
1992 to 1996 Worked with partners on Creating a New View of the World, the first cross
disability, cross-agency conference on disability in Tennessee.
1993 Partnered with the DD Council to coordinate activities related to starting up Partners in
Policymaking. Hope 3 planning grant for housing programs. Joined Community Shares.
1994 Helped create the Vision 2000 video for DMRS promoting supported living based upon
individual choice and need.
1996 “Stand for Children” bus tour to Washington, D.C.
1997 Opened office in Memphis to assist Arlington Class.
1998 Opened office in Knoxville to assist with expanded Advocacy Program.
2003 to 2004 Vote! Campaign surveyed polling places and provided poll worker training.
2004 Launched the Coalition Quarterly magazine with a circulation of more than 10,000
2006 Launched the Coalition‘s first email newsletter – the ENews and a supplemental News
Blog. Supported passage of legislation relevant to Special Education Due Process Rights and
updating Tennessee voting laws with people first language.
Board Chairs – Passing the Torch
1989 -1991 Co-Chairs Roger Blue & Donald Redden
1991-1993 Donald Redden, CMRA
1993 -1994 Roger Blue, The Arc of Tennessee
1994 - 1996 Katie Powers, The Arc of Washington Co.
1996 - 1998 Janet Kidd, Center for Independent Living of Middle TN
1998 - 2000 Louise McKown, East TN Technology Assistance Ctr
2000 - 2003 Kim Hines, Statewide Independent Living Council
2003 - 2005 Carolyn Gibson, Boling Center at UT Memphis
2005 - 2007 Darren Jernigan of D.S. Jernigan and Associates
2007 to present Tom Hopton, Center for Independent Living of Middle TN
Our Evolving Mission
1987 Mission Statement
To ensure that all adults and children with disabilities and their families have full access to
integrated, community-based services which reflect patterns of everyday living.
1993 Mission statement
To build a statewide alliance of organizations committed to creating a society that includes,
values, and supports people with disabilities …
The mission of the Coalition is to influence society to value, support, and include people with
Today’s Mission Statement:
The mission of the Tennessee Disability Coalition is to create a society that values, supports, and
includes people with disabilities. Member organizations envision a future in which our
communities are fully accessible to all individuals with disabilities and their families, and where
individuals are included and fully participate in all aspects of community life.
The Disability Coop – Ahead of its Time
In 2001 collaboration was the buzzword on the street and Peter Druckers‘ book, Meeting the
Collaboration Challenge, became the latest nonprofit must-read. Meanwhile, the Wall Street
Journal was printing a J.E. Edwards advertisement featuring a businessman with a picket sign that
screamed: “Collaborate or Die.” It seems like others were figuring out what some in the
disability community had learned years earlier – partnerships and collaborations result in policy
achievements, cost savings, new solutions to old problems, and innovations in thinking. They
provide excellent opportunities for growth and better outcomes for communities. The birth of the
Tennessee Disability Coalition in 1984 was the beginning of a successful collaboration. The birth
of the Disability Cooperative in 1996 established a different kind of collaboration that allowed
three small groups to more directly share and build resources to support their mutual efforts to
improve disability policy in Tennessee. At that time the Tennessee Disability Coalition, the
Center for Independent Living of Middle Tennessee, and the Statewide Independent Living
Council were all looking for new office space. Yet, none could afford the cost of dedicated
administrative assistance, secretarial or bookkeeping help or the costs of additional space for a
conference room to host community groups.
Together the organizations approached the HCA Foundation (now the Frist Foundation) about
funding a proposal to establish the office cooperative. The selling points included:
The synergy of deliberate and strategic coordination among a related group of nonprofits
results in better social outcomes than nonprofits could achieve in isolation from one another.
Financial savings that result from reduced overhead and duplication of efforts among similar
organizations so more funding could go into programming. The grant was approved and the three
organizations moved in together. They were able to pull resources to share administrative staff,
office machines, and a conference room. Shortly afterward the Coop was joined by the Autism
Society of Middle Tennessee which gained room and support for a part-time parent staffer and
volunteers. Ten years later the Coop has been joined by staff from Support and Training for
Exceptional Parents (STEP) and the Tennessee Mental Health Consumers‘ Association
(TMHCA). In addition, the Tennessee Disability Coalition and the Center for Independent Living
now have more than two dozen staff members on site and the Autism Society has a full time
executive director. Nonprofits are all about connecting with people. Nonprofit groups live or die
based on their ability to communicate complex issues to large audiences, engage supporters in
their cause, and foster collaboration within and across organizations. Collaboration and
cooperation can be challenging, time-consuming and frustrating – and it requires skills that may
not be in the toolbox of nonprofit executives and staff. However, we have also discovered it is
Autism Society of Middle Tennessee
Center for Independent Living of Middle Tennessee
TN Disability Coalition
TN Mental Health Consumers’ Association
Support and Training for Exceptional Parents
Disability advocacy was practically nonexistent in Nashville during the late 70‘s and 80‘s, but
there was Jackie. Born in North Carolina Jackie grew up in Brooklyn before coming to Tennessee
and graduating with a Masters from Peabody where she was the first person to be wheeled across
the platform. In the early 90‘s Jackie approached the Council on Developmental Disabilities
about funding for the Coalition and provided counsel in its early days with an emphasis on
changing attitudes about disabilities. In addition, Jackie was on the selection committee that hired
the Coalition‘s first Executive Director, Carol Westlake; and promoted the idea that ―One person
could be a family‖ during efforts to start the Family Support Program.
East Tennessee Technology
Louise has collaborated with the Coalition on a variety of issues ranging from long term care to
voting rights and won the national Paul G. Hearne award last year as an emerging advocate for
disability rights. In Louise’s words: ―I will always thank Carol (Westlake) for standing by me
when Sundquist refused … to nominate me to the long term care advisory committee after I wrote
a letter to the editor talking about how there was no money in the plan to deliver the services the
legislature said should be included.‖ ―So I still attended every meeting and even joked about
speaking out before I should have during Title 33 testimony … They all laughed because
everyone in that room knew I had been snubbed … It sort of broke the ice during that very crazy
Center for Independent Living
of Middle Tennessee
Sofia has served on the Board of the CIL as well as worked on voting and accessibility issues
throughout Middle Tennessee. In fact, she was responsible for the depiction of a young woman in
a wheelchair as part of a mural that is displayed at the Vanderbilt University Law School Café.
Sofia suggested that the artist include a representation of the ADA in the mural and as a result she
modeled for the painting.
A CIL Perspective
Along with the financial superiority of the coop model, the personal relationships that grow in
such an environment lend themselves to increased information sharing and greater educational
opportunities. Our ability to competently address the needs of our consumers and community
grows exponentially by increasing the number of ―experts‖ dealing with specific issues under one
roof. That, in a nutshell, greatly increases our ability to fulfill the mission of promoting
independence for everyone. - Tom Hopton, Executive Director
Center for Independent Living of Middle Tennessee
A Word from the Autism Society
The Autism Society of Middle Tennessee (ASMT) began its ―leasing‖ relationship with the
Tennessee Disability Coalition in 1997. I use the word ―lease‖ loosely because the Coalition
allowed ASMT to occupy office space free of charge until we were able to really get on our feet.
ASMT was a very small organization, being run by a volunteer group of parents at the time.
Laura Lloyd, the part-time Executive Director, approached Carol Westlake at the Coalition about
joining the Coop and the rest is history. The TN Disability Coalition fully subsidized ASMT‘s
rent until we became more established. That was just the break ASMT needed to move toward the
next level of advocacy and support. - Amanda Peltz, Executive Director
Autism Society of Middle Tennessee
Bringing Together a Variety of Disability Interests
The Coalition is an alliance of organizations and individuals in Tennessee that have joined to
promote the full and equal participation of men, women, and children with disabilities in all
aspects of life. As such, the Coalition is a rarity in the disability world – a statewide, cross
disability organization. By focusing the collective energy of our members and partners we have
been able to create change and progress for Tennesseans with disabilities. In the classroom and
the community, in the workplace and in homes, the Coalition strives to build a more inclusive
Tennessee. Member organizations are typically represented on the Coalition Board of Directors
and have an equal voice in decision making, both at quarterly board meetings and throughout the
year. As a result member organizations help determine our policy agenda and work together with
our staff and other member organizations to advance those interests.
Arc of Tennessee – The Arc of TN is a grassroots, non-profit, statewide organization on
intellectual and developmental disabilities. It was founded in 1952 and is affiliated with The Arc
of the United States. The Arc of Tennessee is also a membership organization composed of
people with intellectual, developmental and other disabilities, their parents, friends, and the
professionals who assist them in reaching their goals. Our web address is www.thearctn.org and
we can be reached toll-free at (800) 835-7077.
Arc of Washington County – We are a non-profit service organization, chartered in 1961 and
affiliated with the Arc of Tennessee as well as the Arc U.S. Our agency is dedicated to promoting
the growth of nurturing communities where all people have the opportunity to join in fellowship
and valued contribution to family, friends, neighborhood, work, spiritual, and community life.
Our web address is www.arcwc.org and phone number is (423) 928-9362.
Arc of Williamson County – The Arc is a family-based organization committed to securing for
all people with intellectual, developmental, or other disabilities the opportunity to choose and
realize their goals of where and how they live, learn, work, and play. The Arc of Williamson
County is affiliated with The Arc of Tennessee and The Arc of the United States. Our web
address is www.thearcofwilliamsoncounty.org and phone number is (615) 790-5815.
Autism Society of Middle Tennessee – A non-profit organization dedicated to promoting autism
awareness, and helping to ensure those individuals in Middle Tennessee with autism, and their
families, receive appropriate, effective services. Our web address is www.tnautism.org and the
Nashville phone number is (615) 385-2077.
Boling Center for Developmental Disabilities – The BCDD at UT Memphis is an
interdisciplinary program that supports children and adults with developmental disabilities and
their families through training, service, applied research, information dissemination, planning,
and policy development. It is one of more than 60 University Centers for Excellence in
Developmental Disabilities across the United States and is now one of the most comprehensive
facilities in the nation dedicated to improving quality of life for people of all ages with
developmental disabilities and their families. Our web address is www.utmem.edu/bcdd and the
center can be reached toll-free at (888) 572-2249 or by TDD at (901) 448-4677.
Brain Injury Association of Tennessee - To improve the quality of life for persons with brain
injuries and their families and to reduce the incidence of brain injury. This is to be accomplished
by striving for excellence in providing statewide leadership, advocating for needed services,
delivering quality resources and information to any person, and developing self-advocacy skills
within persons with brain injury and their families. Our web address is www.biaoftn.org and our
Nashville phone is (615) 248-2541.
Buffalo River Services – The goals of the agency are to provide comprehensive services to
people with disabilities; to develop the most effective and appropriate services possible; to
provide the opportunity for personal growth through independent work and living and to offer the
dignity of risk to all individuals with whom we have contact. Our web address is
www.buffalo-river-services.com and the Waynesboro phone number is (931) 722-5401.
Center for Independent Living of Middle Tennessee – The Center provides persons with
disabilities opportunities to be self advocates and make their own decisions regarding living
arrangements, means of transportation, employment, social and recreational activities, as well as
other aspects of everyday life. Our web address is www.cil-mt.org and our Nashville phone is
Compass Coordination – We provide Independent Support Coordination Services (ISC) for
persons with developmental disabilities and their families. ISC is available to people enrolled in
the state‘s Medicaid Waiver and other programs for persons with mental retardation or other
developmental disabilities. Our web address is www.compasstn.org and our Nashville phone is
disABILITY Resource Center – We are a community-based nonresidential program of services
designed to assist people with disabilities to gain independence and to assist the community in
eliminating barriers to independence. Our web address is www.drctn.org and our Knoxville
number is (865) 637-3666.
D.S. Jernigan & Associates, LLC – Does private ADA Consulting work regarding Title I, II,
and III of the Americans with Disabilities Act. Our company has been in business over eight
years and is regarded as a leading firm in disability education. Our Old Hickory phone number is
East Tennessee Technology Access Center – Our mission is to enable every person with a
disability in East Tennessee to reach his or her potential for functioning in the mainstream of
society through innovative uses of technology. ETTAC serves people in 24 counties in East
Tennessee. Visit us at www.discoveret.org/ettac and call (865) 219-0130 (Voice/TTY).
League for the Deaf and Hard of Hearing – Our mission is to unite the Deaf, the Hard of
Hearing and the Hearing communities through education, services and support to empower
individuals to achieve their full potential. Visit us on the web at www.leagueforthedeaf.com or
call our Nashville office at V/TTY (615) 248-8828.
Mid-South PVA – The Paralyzed Veterans of America, a congressionally chartered veterans
service organization founded in 1946, has developed a unique expertise on a wide variety of
issues involving the special needs of our members – veterans of the armed forces who have
experienced spinal cord injury or dysfunction. Visit us on the web at www.pva.org or call us
Middle Tennessee Council of the Blind – The Council is made up of blind and visually
impaired individuals all over the country organized into state and local chapters. You can call the
Council at (615) 356-4940.
Middle Tennessee TASH – An international membership association that promotes inclusive
communities through research, education, and advocacy. TASH members are people with
disabilities, family members, fellow citizens, advocates, and professionals working together to
create change and build capacity so that all people, no matter their perceived level of disability,
are included in all aspects of society. To learn more visit www.tash.org or call (202) 263-5600.
PARENTS – Parents Association for the Rights of Educating Non- Traditional Students is a
family support group whose purpose is to help make life for persons with disabilities and their
families as near normal as possible. The major thrust of PARENTS is to address educational
goals and long term needs for life after school. This involves helping families learn what are
thought to be the best and most promising practices to achieve as near as possible normal living,
working, and playing; results that may be reasonably expected; and benefits and methods of
collaboration with agencies on services that need to be offered to achieve those results. For more
information call (865) 688-4929 or write to JMarshTN@aol.com.
Special Olympics Tennessee – To provide year-round sports training and athletic competition in
a variety of Olympic-type sports for children and adults with intellectual disabilities, giving them
continuing opportunities to develop physical fitness, demonstrate courage, experience joy and
participate in a sharing of gifts, skills and friendship with their families, other Special Olympics
athletes and the community. See us on the web at www.specialolympicstn.org or call (800) 383-
Support and Training for Exceptional Parents – The purpose of STEP is to support families
by providing free information, advocacy training, and support services to parents of children
eligible to receive special education services under the Individuals with Disabilities Education
Act who reside in Tennessee. To learn more visit www.tnstep.org or call (800) 280-STEP or
TTY (423) 639-8802.
Technology Access Center/ Access Services of Middle TN – Our mission is to promote the
independence and participation of individuals of all ages with disabilities in school, work, play,
and other everyday activities through their use of assistive technology. Visit us on the web at
http://tac.ataccess.org or call V/TTY (615) 248-6733.
Tennessee Association of Audiologists and Speech Language Pathologists – Our mission is to
meet the needs of persons with hearing, communication, and swallowing disorders and to
enhance the professional development of audiologists and speech-language pathologists. Visit us
on the web at www.taaslp.org or call (615) 298-8165.
Tennessee Conference on Social Welfare – TCSW is active in bringing together citizens and
government to address aging and disability home-based care, early intervention for at-risk
children and families, systems of care for children in need of mental health services, building
programs for life-skills and leadership development for our youth, and much more. Visit us on the
web at www.tcsw.org or call (615) 313-9980.
Tennessee Council on Developmental Disabilities – The Council promotes public policies to
increase and support the inclusion of individuals with developmental disabilities in their
communities. The Council works with public and private groups across the State to find
necessary supports for individuals with disabilities and their families, so that they may have equal
access to public education, employment, housing, health care, and all other aspects of community
life. Visit us on the web www.state.tn.us/cdd or call (615) 532-6615.
Tennessee Health Care Campaign – The THCC is a statewide, nonprofit working for
affordable, accessible, and quality health care for all Tennesseans. Our Board of Directors is
made up of consumers, advocates, and social service professionals from throughout the state and
works in collaboration with these same type groups to affect positive change in public health and
health care. Visit us on the web at www.thcc2.org or call toll-free at (877) 431-7083.
Tennessee Mental Health Consumers Association – Through information, education, and
advocacy, TMHCA seeks to enhance the quality of life for all by promoting independence,
dignity and purpose. TMHCA is Tennessee‘s only statewide consumer owned and operated
organization with a board of directors and staff that are 100% mental health consumers.
Regardless of where our members are on life‘s continuum, we provide the resources and strength
to help them make their own choices, reach their goals and dreams, and make the most of their
lives. Visit us on the web at www.tmhca-tn.org or call (615) 250-1176.
Tennessee Traumatic Brain Injury – In 1993, the Tennessee General Assembly established the
Traumatic Brain Injury Program in the Department of Health to address the needs of survivors of
brain injuries and their families. Program staffs are available to respond to questions, make
referrals, and provide education and prevention programs. The initial contact can be the first link
in a chain of support for a survivor or family member. Eight service coordinators located across
the state are available to assist survivors in accessing resources in their home community. Visit us
on the web at http://health.state.tn.us/TBI/Index.htm or call toll-free (800) 882-0611.
Tennessee Voices for Children – TVC speaks out as active advocates for the emotional and
behavioral well-being of children and their families. We encourage coalition building and
collaboration among service providers and families to best meet the needs of all children. We
engage in public awareness and education efforts through the presentation of statewide
conferences focusing on topics of interest to families and service providers as well as develop and
empower the Statewide Family Support Network. Visit us on the web at www.tnvoices.org or
call (800) 670-9882.
The Team Centers, Inc. – Offers a unique multi-specialty healthcare facility that provides
services across the life-span of the individual, from early diagnosis and treatment all the way
through adulthood. This continuum of care gives families the hope they need in dealing with the
complex and complicated realities of autism and other developmental disabilities. Visit us on the
web at www.teamcenters.org or call (423) 622-0500.
Tri-State Resource & Advocacy Corp. – TRAC is a Center for
Independent Living created by individuals with disabilities for individuals with disabilities
offering many services. TRAC can provide assistance with ADA support, assistive devices,
children‘s services, communication, education, employment assistance, housing assistance,
(affordable, accessible and limited modifications), income benefits, mobility training, outreach,
personal assistance, service to family members, Social Security benefits, ramps, recreational
information, transportation, volunteer coordination and more. Visit us on the web at
www.4trac.org or call toll-free (800) 868-8724. Voice/TTY access available by calling
The Vanderbilt Kennedy Center – The Center has been transforming the lives of children and
adults with disabilities through research and innovative services for more than four decades. The
center is an interdisciplinary research, training, diagnosis, and treatment institute that brings
together scientists and practitioners in behavior, education, genetics, and neuroscience to work
together in unique ways to solve the mysteries of development and learning. Visit us on the web
at http://kc.vanderbilt.edu/kennedy or call (615) 343-2540 for more information.
Vista Points – We are a non-profit resource center dedicated to raising awareness about Special
Needs Trusts. Through community outreach activities, education programs and marketing
campaigns, Vista Points promotes the advantages of Special Needs Trusts to those who will most
benefit from them, including people with disabilities, their parents and caregivers, and the
professionals who serve and guide them. Visit us on the web at www.vistapoints.org or call
FROM A COALITION STALWART…
My New View of the World
I was honored to be asked to write a column for this special issue. Having an opinion is easy.
Expressing it in a durable, lasting format fit for public consumption is challenging when you feel
passionate about your topic and you wish not to step on toes. So, this is my disclaimer that the
opinion expressed here is strictly my own. This past March I removed myself from the daily grind
of advocacy work after 15 years with the Coalition. I now have the liberty of stepping back and
seeing the big picture with a fresh perspective. It‘s my New View of the World, a phrase that
harkens back to the early years when the Coalition sponsored the first series of statewide annual
cross-disability conferences, known as Creating a New View of the World. It pains me to say what
I see is stagnation, if not regression, rather than progress toward the realization of home- and
community-based supports sufficient for all who need them. Pointing the finger squarely at
myself first and foremost, I see complacent futility as contributing to this reality. My world view
is premised on a philosophy that perception is everything. If you are strictly a left-brained thinker,
you no doubt disagree with this view of the world. Left brain thinking is analytical, logical, fact-
based, and objective. Right brain thinking is more concerned with emotional expression, context,
and the synthesis of ideas and circumstances. A fact may be self evident and irrefutable; but how
it plays out in the minds and lives of individuals affected is a very subjective and personal matter.
For example, it provides little comfort or hope to families on a long waiting list for services when
a state official tells them that significant progress can be demonstrated by the fact that a few
dozen people come off the list to receive services each month from the Division of Mental
Retardation Services. If the family member is not among the lucky few as the overwhelming
majority is not, this is cause for despair; not congratulations! This is not progress; it‘s the
government telling us that a mule is really a thoroughbred.
With regularity, I go through a sequence of thoughts with myself or others about why things are
the way they are and why obvious solutions aren‘t in play. This right brain exercise always
concludes with the thought or comment: ―There I go again, trying to apply logic to situations that
only make sense in the world of the surreal.‖ Our cause has morphed into a Fellini movie. How
else can you explain why suffering and injustice experienced by so many individuals and families
goes unheeded and unaddressed? Albert Finney in the movie classic ―Network‖ uttered one of the
all-time great lines: ―I‘m mad as hell and I‘m not going to take it anymore!‖ Well, when are we
going to get mad enough to demand more from our government on behalf of desperate families
struggling without assistance to provide a home and care giving for a loved one while
maintaining an income sufficient to survive? What about all the individuals incarcerated in
nursing homes against their will for lack of home- and community-based services? They deserve
better! There‘s a reason why the language of advocacy is pugilist—fighting words. We fight for a
cause, we win or lose battles, we seize opportunity, we demand changes, we push for
improvements, we struggle against the odds, and we soldier on. The causes of civil rights and
social justice are long term and never ending. We are not going to wake up one day and say, ―Oh,
it looks like we‘ve achieved our goal.‖ Others who come after us will still be pressing the cause.
As I see it, very little will change unless we make enough noise and cause sufficient irritation to
get action where it‘s clearly needed. We cannot do it without getting the public‘s attention and
support, even their participation. Other causes and movements draw from a diverse cross section
of the population, not just from those immediately affected. We need to engage the media to see
the suffering and hear our stories of quiet desperation. When there‘s a town hall meeting, the
media should be there to capture the compelling testimonials of families in dire need of relief and
services. Insufficient funds are nearly always cited as the excuse for inaction and stagnation. We
have to make disability causes a priority in the minds of state administrators and the legislature,
which ultimately holds the purse strings. We have to show them where and how to get the money
necessary to make a difference. My favorite potential funding source is the State Department of
Transportation. They have their own dedicated funding stream. Why does it have to be that way
other than the road builders and contractors want it that way? Tennessee has arguably the best
state highways in the nation. In my view, that‘s not the right priority. We have to question the
status quo and accept no excuses like ―this is the way it‘s always been done.‖ We have to think
out of the box and use both our right and left brain lobes to come up with better solutions. Then,
we have to be willing to make some noise, get the public‘s attention and support, and confront the
powers that be until they make our priorities their own. Speaking for myself, it‘s time to get back
in the fray and kick some ass!
Dara Howe is the former director of Family Voices at the Coalition and the second person
employed by the Coalition. She lives in Nashville with her 90-year-old mother and 23-year-old
son, both with disabilities.
Disability Days on the Hill
This is your opportunity to get acquainted with state legislators at the Capitol and talk about
issues important to you and your family. Dozens of disability organizations from across the state
will be participating. With your help we can ensure that every legislator gets to hear from a
constituent with a disability or their family. For more information contact Courtney at (615) 383-
9442 or by email at firstname.lastname@example.org.
February 27, 2008
March 5, 2008
March 12, 2008
Disability Days logo created by Jessica Dockter of L.E.E. Design, www.leedesign.org. Support for
Disability Days provided by AmeriGroup.