VOTE!
November 2, 2004
ELECTION DAY IS NOVEMBER 2,
2004
YOU CAN:
Register to vote
Read current campaign and election news
Vote for the candidate of your choice
Help expand the opportunities for people with
disabilities
Help advocate for inclusion and equal access
Join the VOTE! Campaign
*Early voting begins on October 13th and ends on October 28th.
COALITION QUARTERLY
4 InFormation
5 Benefits Planning Available
6 The University of TN Boling Center
8 Brain Resource
& Information Network
11 Lack of Accessible Polling Places
16 TennCare Update
18 No Child Left Behind?
22 Update on Tennessee v. Lane
InFormation
Carol Westlake, Executive Director
A Not So Silly Season
I have read that in New Hampshire they call this the ―silly season‖.
Campaign time. A silly season because of the claims, counter claims, and
political posturing by candidates and political parties. The fall election is fast
approaching- but it is far from a silly season- it is deadly serious.
Decisions Impact Lives
For many of the more than 1 million Tennesseans who experience disability,
the decisions that are made by elected by elected officials in Nashville and in
Washington have a direct impact on lives, productivity and independence. It
may seem that policy discussions and budget debates are distant yammering
in the halls of the General Assembly or Congress. They are not. Policy
discussions, budget priorities, and even personnel appointments can, and do,
have a direct impact on the lives of people with disabilities. Public policy
can be a life and death matter for people with disabilities.
For the last four years, legislation has been introduced to address the waiting
lists for long-term care services for people with mental retardation.
However, it took a lawsuit to really get movement on the issue. And yet
thousands are still waiting.
In 2000, the Tennessee General Assembly expanded the responsibility of the
Department of mental Health to include Developmental Disabilities. Te date,
neither the governor nor the legislature has appropriated funds to actually
provide services to this neglected group. For them, there is not even a
waiting list.
Despite broad public support for home and community based alternatives to
nursing home care and a favorable Supreme Court decision (Olmstead),
Tennessee remains at the bottom of state rankings in spending on in-home
supports, personal assistance and other home and community based services.
People are still forced into institutions because they lack basic services.
Efforts to end the funding bias in favor of segregated and restrictive special
education placements have been unsuccessful. Too many children languish
in segregated settings despite the proven success of students who have
inclusive opportunities.
The TennCare program is facing significant cuts that will impact the
availability of appropriate affordable health care for 20% of the state’s
population. Without health, productivity and independence are impossible.
There are equally important issues and policies impacting people with
disabilities at the Federal level as well.
In these times of competing budget priorities, tax debates, downsizing, and
ever more acrimonious political rhetoric, the voices of people, of citizens,
can get lost. We do not have to let that happen.
Time to Act
The fall elections will determine who will be in the General Assembly, in
Congress and who will be President. During this ―not so silly season‖ it is
important that people who care about disability issues not allow important
issues to be sidetracked. The time to educate policymakers is not in the
middle of legislative session when attention is pulled in many directions at
once, but now during campaign season.
Now is the time to listen – and to speak. Now is the time to engage the
candidates. Educate them on disability issues; build support for the
programs, services, and policies that are important to you. Support their
campaigns if they are on board with your agenda. And VOTE! This is not a
job for someone else. This is a job for each of us. We must participate in the
process to make things happen. We cannot expect someone else to do it for
us. Get involved. Make your voice heard. Together we can achieve great
things.
Benefits Planning Available
The Statewide Independent Living Council of Tennessee and the Center for
Independent Living of Middle TN have partnered to offer a new program to
assist Social Security beneficiaries and recipients with disabilities who are
exploring career development. The inception of this program is the result of
the recent focus placed on the passage of the Ticket to Work and Work
Incentive Improvement Act of 1999. Benefits Specialists are stationed
across the state, covering all urban and rural areas, to develop this innovative
program. Services include benefits planning, assistance, outreach, and
management of employment supports to people who are planning to pursue,
maintain, or advance their employment.
Benefits Planning:
Benefits Specialists collect data on an individual’s current benefit status,
provide critical analysis of the impact of work and earnings on these
benefits, and make recommendations to the individual as to safety nets and
benefit management plans that could be put into place as the individual
develops a plan for employment. The individual receives a report
highlighting and outlining options and recommendations for consideration as
part of the career development and employment process.
Benefits Assistance:
There are many varied agencies that may be working with an individual at
any given time to assist in an employment plan, such as Social Security
Administration (SSA), state vocational rehabilitation, career centers, schools,
advocacy groups, mental health agencies, etc. A Benefits Specialist can
evaluate the array of service delivery plans that may be coming together to
support an individual and ensure that a comprehensive plan has been
developed.
Outreach:
To ensure the continuity of employment planning and benefits advisement,
outreach with many local community organizations is essential. Benefits
Specialists share information with individuals and groups regarding Social
Security Disability Insurance (SSDI), Supplemental Security Income (SSI),
work incentive programs through SSA, community resources, and more.
Benefits planning and assistance is about establishing partnerships that
enhance the self-sufficiency and economic wellness of beneficiaries and
recipients, while at the same time supporting their employment interests. If
you would like to discuss the effect of employment on your Social Security
benefits and learn what options are available, please contact Scott Wyatt at
the Center for Independent Living. To make an appointment, please call
(615) 292-5803 ex. 52. For additional information call our toll free number,
1-888-839-5333.
Member Feature
The University of Tennessee
Boling Center for Developmental
Disabilities, Memphis
―Developmental delay suspected, please evaluate and treat.‖ Every year a
large number of families refer themselves, or bring their child’s physician’s
referral letter and a great deal of anxiety, to the UT Boling Center for
Developmental Disabilities (BCDD) in downtown Memphis. While
residents of the Mid-South view BCDD as the premier source for assistance
in diagnosis, treatment, and/or referral for their children, the scope of
activities is actually much more extensive. Running throughout its varied
programs and services, however, are the threads of inclusion, access,
independence, choice, and systems change, designed to create better lives for
individuals of all ages with developmental disabilities, their families, and
communities.
Founded in 1957 by the late Dr. Robert G. Jordan, Jr., BCDD started as a
clinic in the basement of LeBonheur Children’s Hospital with just three staff
members: a physician, a social worker and a psychologist. Originally a part-
time clinic for children with mental retardation, it now boasts its own nine-
story building, built in 1970 and named for Dr. Edward J. and Carolyn P.
Boling in 1988. Dr. Boling was the 17th President of UT and his name is
connected to one of the most comprehensive facilities in the nation.
Beyond clinical referrals, a sampling of the programs that are housed at
BCDD include the Memphis Oral School for the Deaf, the Harwood
preschool, a Genetics Clinic, a Physical and Nutritional Management
program, Behavioral Therapy programs, Newborn Screening and
Inborn Errors of Metabolism Clinic, Center of Excellence for Children in
State Custody, and the Relative Caregiver Program. Through these and other
programs, the BCDD serves approximately 1500 individuals a year, but their
primary purpose is training professionals to better serve those with
developmental disabilities. The Boling Center is partially funded by the
Administration on Developmental Disabilities as a University Center for
Excellence in Developmental Disabilities (UCEDD). Along with Tennessee
Protection & Advocacy and the Tennessee Council on Developmental
Disabilities, it is the original partner in the current system of developmental
disabilities networks that exist in every state. As a UCEDD, its mission is to
be a liaison between research in institutions of higher learning (UT Health
Science Center and others) and service delivery systems. BCDD
accomplishes this through:
1) Interdisciplinary preparation of personnel
2) Community services and support
3) Research
4) Dissemination of information.
The second major funding partner at BCDD is the Federal Maternal and
Child Health Bureau (MCHB) of the Health Resources and Services
Administration of the Department of Health and Human Services. The
BCCD was given the first training grant in the country in 1966 for
Leadership Education in Neurodevelopmental and Related Disabilities
(LEND). This grant moved training professionals to the forefront of BCCD’s
mission and underscores the interdisciplinary nature of that training. Two of
the more unusual programs at BCDD are Project DOCC (Delivery of
Chronic Care) and the Reproductive Health Clinic. The first program invites
parents of children with long-term disabilities and chronic health needs to
help train residents from UT’s medical school. Doctors interview parents,
visit a family’s home, and attend a grand rounds panel of caregivers. This
offers the doctors a chance to become acquainted with the impact of having
a child with exceptional needs. The Reproductive Health Clinic at BCDD
reaches out to provide medical care and support to adolescents and adults
with developmental disabilities. At the helm of the BCDD is Frederick B.
Palmer, M.D., Shainberg Professor of Pediatrics. Dr. Palmer is the recently
elected President of the Association of University Centers on Disabilities,
(AUCD), which includes all the UCEDD’s in the US. The Associate
Director of BCDD, Dr. Carolyn Gibson, is also Chair of the Disability
Coalition’s Board of Directors.
For more information on The UT Boling Center for Developmental Disabilities, go to
their website: www.utmem.edu/bccd/ or contact them at:
Boling Center for Developmental Disabilities
711 Jefferson Avenue
Memphis, Tennessee 38105
Phone: 901-448-6511 Toll-free: 888-572-2249
TDD: 901-448-4677 Fax: 901-448-7097
B.R.A.I.N. Resource & Information
Network
The Tennessee Disability Coalition and the Tennessee Traumatic Brain
Injury 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). TBI, as defined by the IDEA (Individuals with
Disabilities Education Act), is ―an acquired brain injury caused by an
external physical force, resulting in a functional disability that adversely
affects a child’s educational performance.‖ 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.
In 2004, strengthening our commitment to Tennessee’s student population,
the Department of Education, Division of Special Education and the TBI
Program have combined talents with B.R.A.I.N., to best serve students as the
prevalence of TBI makes ―headway.‖
Project BRAIN Resource Teams:
Local, Lasting Supports for Tennessee Students with
TBI
Based on a successful ―TBI Resource Team‖ model implemented in other
states, Project BRAIN has established Resource Teams in selected school
systems across the state. BRAIN Resource Teams are comprised of
professionals from varying disciplines who have received extensive training
on educating students with TBI. Team members act as consultants for the
school systems in which they work and may also provide basic training and
resources to colleagues and families as needed.
Listed below are participating school systems working to
successfully transition children back into schools:
WEST
Carroll County Schools
Hardeman County Schools
Henry County Schools
Jackson-Madison County
Schools
McNairy County Schools
Shelby County Schools
MIDDLE
Maury County Schools
Metro Nashville Schools
Murfreesboro City Schools
Rutherford County Schools
Putnam County Schools
Sumner County Schools
EAST
Hamilton County Schools
Knox County Schools
Rhea County Schools
Roane County Schools
Sevier County Schools
Washington County Schools
Teams provide and support the following:
• Accurate identification and intervention by personnel already employed in
your school system.
• Coordinated training and consultation regarding identification, school
reentry planning, IEP development, intervention selection and
implementation, long-term monitoring of students, and other concerns
professionals and paraprofessionals face in supporting students with brain
injury.
• Consistent and familiar contacts for hospital and rehabilitation personnel
Brain Injury 101: An Overview of TBI
Despite the high incidence of traumatic brain injury among children and
youth, it is still considered a ―low incidence disability‖ within educational
settings. In turn, there is often a lack of training and information made
available to education professionals to prepare them for supporting students
with TBI in educational settings.
Project BRAIN provides free “Brain Injury 101” training to school
systems, families, health care professionals and related service providers
around the state. The primary objective of ―Brain Injury 101‖ is to help
people who support students with TBI understand the nature of brain injury
and the unique needs of this group of children and young adults. Designed
by experts in pediatric brain injury, this training session includes basic
information about the following: brain injury; the potential impact of brain
injury on physical, psychosocial, and cognitive skills; considerations for
planning of educational services, including information about local and
national resources.
Schools are the largest provider of services to students with disabling
conditions.
To learn more about TBI or to contact a Resource Team in your area…
West TN
Laurel Ryan,
Resource Specialist
2565 Horizon Lake Drive
Suite 108
Memphis, TN 38133
(901) 320.7800
laurel_r@tndisability.org
Middle TN
Paula Denslow
Project Coordinator
955 Woodland St.
Nashville, TN 37206
(615) 383.9442
tty (615) 292.7790
paula_d@tndisability.org
East TN
Jennifer Jones, M.S., C.R.C.
Resource Specialist
5641 Merchants Center Blvd.
Suite A102
Knoxville, TN 37912
(865) 689.1797
Don’t miss out on what could be the most important
eTHE LACK OF ACCESSIBLE
POLLING PLACES
Still Persists as a Major Barrier
to Disability Voters’ Rights
Voting is a fundamental right and responsibility of citizenship. People with
disabilities, whose lives are often profoundly affected by government
programs and policies, are important stakeholders in the democratic process.
According to the National Organization on Disability (NOD) there are 40
million eligible voters with disabilities in the United States, or
approximately one-fifth of the country’s population. The disability
community, which has been called the sleeping giant of American politics,
can be an important voting block. Yet many eligible voters with disabilities
did not cast a vote in the 2000 election. For example, according to census
data there were 1,059,947 Tennesseans with disabilities of voting age in
November 2000, yet only 417,619 Tennesseans with disabilities voted in the
presidential election that year.
Unfortunately, many registered voters who have disabilities fail to cast their
ballots on Election Day, often because they feel like their vote doesn’t
matter. Other times they don’t vote because of logistical problems, such as
difficulty finding transportation or accessing the polls. Inaccessible polling
sites violate the civil rights of Americans with disabilities and prevent those
citizens from participating in the democratic process. As Americans with
disabilities increasingly participate in community life, more of them will
want to vote in person, at the polls, rather than voting by absentee ballot.
The Americans with Disabilities Act (ADA) makes it illegal for state and
local governments to discriminate on the basis of disability in their
programs, services, and activities. Specifically, the ADA entitles people with
disabilities to reasonable accommodations necessary to enable them to
participate in government programs, such as registering to vote and casting a
ballot. All polling places should be physically accessible to voters with
disabilities. However, many polling sites throughout the country and in
Tennessee are not accessible, and few meet all of the guidelines set by the
ADA, Accessibility Guidelines (ADAAG) or the Department of Justice. The
Help America Vote Act (HAVA) of 2002 is aimed at solving many of the
problems that happened during the 2000 presidential election. HAVA also
contains key elements that are aimed at making voting more accessible for
individuals with disabilities.
These elements include funding for poll worker training, funding for making
polling sites more accessible, voter education, and accessible voting
machines. Unfortunately, most of HAVA’s disability provisions, for
example requiring a mandatory accessible voting machine in every polling
precinct, will not go into effect in Tennessee until 2006. The Tennessee
Disability Coalition’s statewide voter empowerment project known as the
VOTE! Campaign is organizing people with disabilities, their friends, family
members, and other supporters to actively participate in the effort to improve
poll accessibility for all. You can join your local VOTE! Campaign
committee, or take some friends and look at your polling site for
accessibility before Election Day on November 2nd, 2004. Poll accessibility
includes parking, signage, curbs, entrance ramps, walkways, doorways and
thresholds, and voting equipment.
The following accessibility checklist will help you to determine if your
polling place is accessible.
• Look for either permanent or temporary signs to identify parking for
persons with disabilities, and directions to accessible entrances.
• Make sure there is a temporary ramp if your voting place has steps at the
entrance, but be sure the incline is not too steep.
• If your voting place has heavy doors, they should be propped open, or
someone should be available to assist those who need help.
• A 32‖ clearance at non-revolving doors will enable a person using a
wheelchair to enter the building.
• Smooth and hard floor surfaces, those covered with a tightly woven carpet
with no pad, or a thin pad, are best for wheelchair users and others.
• Tables to be used by people in wheelchairs should have a clear knee space
that is at least 27‖ high.
• Make sure there are printed instructions to enable persons who are hard of
hearing to vote.
• You should also be able to get printed instructions in simple, large lettering
to help you vote if you are vision impaired. Pictures of symbols also help
everyone. For example, an arrow or a hand pointing is easier for everyone to
understand than signs that say ―voters’ entrance at the east side.‖
See the ADA Checklist for Polling Places on the Department of Justice
website for more detailed disability guidelines at:
http://www.usdoj.gov/crt/ada/votingck.htm.
Disability Voters’ Rights
You can contact the Election Commission if you or someone you know
needs reasonable accommodations at any stage of the voting process.
Examples of reasonable accommodations are instructions explained in
simpler language, being accompanied into the voting booth by a friend or a
family member, or getting assistance in casting a ballot. In addition, all
election officials should know that federal law ensures voters with
disabilities the right to be accompanied by and receive assistance from a
person of their own choosing in the voting booth (except for an employer, a
union representative, or a candidate running for political office). Animals
that assist voters with disabilities are allowed in all buildings. If the election
officials are not fully trained in voting machine operation they may not
know how to lower a voting machine in order to make it accessible for
persons using a wheelchair, and in that case using a paper ballot to vote is an
option. You call your local or state Election Commission (bring the number
with you when you go to vote) and ask for their assistance, and also report
that the election officials did not know how to operate the voting machines
correctly for persons with disabilities and suggest additional training.
In addition, VOTE! Campaign staff and volunteers are training election
officials on disability etiquette and civil rights. Trained individuals who have
disabilities are volunteering to work in the polling place and will help other
election officials if a problem should arise. Citizens with developmental
disabilities or psychiatric disabilities are sometimes turned away from the
polls by Election Officials who have not been trained correctly. Know your
rights! Individuals with physical, cognitive, or psychiatric disabilities that
are registered to vote are eligible to vote just like any other citizens, and
should be offered the same courtesy and respect as anyone else.
You can contact the Tennessee Disability Coalition VOTE! Committee
Central Office at 615-383-9442, (or your local VOTE! Committee), if you
have been turned away from the polls or not allowed to vote due to an
election official’s ignorance of the law, or due to a lack of accessibility.
Remember that provisional voting is now allowed.
Provisional ballots, which have already become part of Tennessee Election
Law, allow individuals to vote on a provisional paper ballot even if their
name does not appear on the official registration list. The provisional ballot
will then be checked by election officials to see if that voter is in fact eligible
to vote at that precinct. If so, his or her vote will then be counted.
The Americans with Disabilities Act (ADA) is landmark legislation and one
of the disability community’s most significant accomplishments. The Help
America Vote Act (HAVA) of 2002 may someday be viewed in similar
terms. History has shown that no legislation alone can ensure the rights of
people with disabilities to fully participate in the voting process. The lack of
accessible polling places still persists as a major barrier to disability voters’
rights. The good news is that a remedy exists: the active, continuous
participation of the disability community. Join the VOTE! Campaign today!
Resources
Your Local or State Election Commission
To contact Tennessee Election Officials Website:
http://www.state.tn.us/sos/election.htm
Brooke Thompson, Tennessee State Coordinator of Elections,
Nashville
615-741-7956 TTY: 615-292-7790
e-mail to: bkthompson@mail.state.tn.us
The Tennessee Disability Coalition -VOTE! Campaign
955 Woodland St. Nashville, TN 37206
Voice: 615-383-9442 Fax: 615-383-1176 TTY/TDD: 615-292-7790
e-mail: vote@tndisability.org Website: www.tndisability.org
Department of Justice - ADA Checklist for Polling Places:
http://www.usdoj.gov/crt/ada/votingck.htm
A TennCare Update
In February, Governor Bredesen proposed a dramatic reform of TennCare. A
summary of the proposed reforms appeared in the last issue of the Coalition
Quarterly. Much has happened since then.
TennCare serves 1.3 million Tennesseans in two programs. People on
TennCare are divided into two groups: TennCare Medicaid and TennCare
Standard. All people who qualify for Medicaid are served in TennCare
Medicaid. All others who meet TennCare eligibility requirements are served
in TennCare Standard.
PEOPLE ON TennCare INCLUDE:
625,000 children
363,000 people who are elderly, blind or disabled
74,000 people who are uninsurable because of a medical
condition or disability
Most people on TennCare are poor or near poor. Poverty level for an
individual is $776.00 per month before taxes are taken out. For a family of
three it is $1,306 per month. Only about 80,000 people on TennCare are
above 200% of poverty ($2,612/month for a family of three).
TennCare matters to all of us. Whether or not you are on TennCare, you
have a stake in what happens for a variety of reasons.
• TennCare is a significant part of the overall health care system in
Tennessee. Changes in TennCare are felt throughout the health care system.
• When doctors change their practices for TennCare enrollees, practices
change for private insurance and private pay patients as well.
• TennCare serves more than 20% of the people in Tennessee. Everyone has
a family member or friend or coworker on TennCare.
• Health care matters. Healthy people work and go to school and are able to
be independent and productive. TennCare makes that possible for many
people.
TennCare is Tennessee’s Medicaid program. TennCare operates under a
special ―waiver‖ from the federal Centers for Medicare and Medicaid
Services (C.M.S.) exempting it from certain federal rules. The Governor has
recently released a new proposed waiver that would fundamentally change
TennCare. Coupled with a new definition of medical necessity – EVERY
person on TennCare will be affected.
To learn more about the proposed waiver changes and how they impact
adults and children with disabilities, visit our website at:
www.tndisability.org or www.tenncare.org.
Medical Necessity: what’s the big deal?
Federal law requires that the services paid for by TennCare be items and
services that are covered by the state’s Medicaid program and that they be
―medically necessary‖ for the individual getting them. Except in the Early
Periodic Screening, Diagnosis and Treatment (EPSDT) program, the federal
government does not define what is ―medically necessary.‖ Each state can
develop its own definition. The TennCare bill that has now become law in
Tennessee changes the Tennessee’s definition. This is important because
people who depend on TennCare can only get treatment and medicines that
are ―medically necessary.‖ The old TennCare definition protected people by
saying that ―medically necessary‖ services and medicine are those that are
―appropriate with regard to standards of good medical practice.‖ The new
definition of ―medically necessary‖ would only allow doctors to provide the
treatment that is the ―least costly‖ and is also ―adequate.‖ ―Adequate‖ is not
a medical term and is certainly less than ―most appropriate‖ or ―effective.‖
This means that people on TennCare, may not be able to receive the
treatment that their doctors’ think would be effective to improve their
conditions.
How does it really impact lives?
Enrollees may receive only medical items and services that are within the
scope of defined benefits and determined by the TennCare program to be
medically necessary. The definition is divided into four parts. To obtain a
medical item of service, even if included in the scope of benefits, the
item/service must meet all four parts of the medical necessity definition. The
burden rests solely with the patient to overcome the barriers and it will be
unlikely for a patient or provider to meet the medical necessity definition.
TennCare Reform Timeline
of Activities
February 17, 2004 - Governor Bredesen introduced his TennCare reform
plan to a joint session of the General Assembly
(http://www.tennessee.gov/governor/tenncare.htm)
April 20, 2004 - Advocates release recommendations for reforming
TennCare Safely and effectively.
(http://www.tenncare.org/)
May 11, 2004 - TennCare legislation dealing with the definition of Medical
Necessity is signed into law.
(http://www.state.tn.us/sos/acts/103/pub/pc0673.pdf)
August 19, 2004 - Governor Bredesen releases the draft TennCare Waiver
proposal.
(http://www.tennessee.gov/governor/tenncare.htm)
Under PART ONE of the new definition, the service must “diagnose or
treat an enrollee.” Services that will no longer be covered under this
definition include:
Preventative care for children and adults
• Immunizations
• Diabetes screening
• Pap smears
• Mammograms
Pain management medications that do not treat or diagnose
• Pain medications for those with chronic illnesses which are painful, like
Rheumatoid Arthritis, Multiple Sclerosis, and Cancer
• Nausea medication to treat the side effects of undergoing chemotherapy
Other service which improve the quality of life and are life sustaining, but
do not treat or diagnose
• Home health care for ventilator dependant children and adults
• Home health care for medically fragile children
• Therapy services to prevent regression (occupational therapy and physical
therapy) for children with severe cerebral palsy, which does not improve.
Under PART TWO of the new definition, the service must be “safe and
effective.” It is unclear how these terms could be adapted to determine the
medical necessity of services such as physician visits or surgery. For
example:
• If an individual has appendicitis, would an appendectomy be determined
―safe and effective‖ since surgery always has inherent risks?
• Could any surgery meet this requirement since a chance of complications
or death exists?
• Could chemotherapy be determined safe since its usefulness is based on its
toxic nature and ability to kill healthy as well as unhealthy cells? A service
or treatment may be ―effective,‖ but may produce negative side effects or
have long-term consequences for a patient. A more effective treatment may
not have side effects, but would not be available if it costs a little more.
Under PART THREE of the definition a service will not be covered if
there is an adequate cheaper alternative. In some cases this may include
no treatment at all, but rather the “adequate” cheaper alternatives listed
below.
• Observation for a three-year-old who is showing symptoms of autism
• Behavior change for a diabetic 75 year old with a recommendation to ―eat
right and exercise more‖
• Observation for a 5-year-old exhibiting symptoms of brain cancer
Under PART FOUR of the definition a service will not be covered if it is
experimental or investigational. This part would eliminate many common
medical services since most medical care in the United States has
developed based on tradition and collective experience. Unfortunately,
Tennessee’s definition fails to recognize these essential elements of the
practice of medicine and would render most medical care – despite its
proven value – as essentially experimental or investigational.
It is a big deal!
The TennCare definition of medical necessity gives Tennessee’s TennCare
Bureau breathtaking and unparalleled power in determining whether a
covered service under the TennCare program is medically necessary. To the
best of our knowledge, no other health care insurer – private or public – has
ever had this kind of authority. Further, the definition effectively classifies
the vast majority of medical care as experimental. The state would have the
authority to reject all forms of professionally appropriate treatment in favor
of the least costly alternative, which can include doing nothing. Finally, the
definition would impose a virtually insurmountable burden on providers and
patients to demonstrate that standard medical practice is not experimental, a
burden that is unprecedented in medicine today. This new definition
establishes a new way to reduce costs, to let government instead of doctors
decide which treatments are medically necessary.
What can you do?
The people who decide on TennCare changes are:
(1) The Governor
(2) Your state representative and
(3) Your state senator
These are the three most important TennCare decision-makers. They need to
hear from you! (Your U.S. Senators — Senator Frist, Senator Alexander and
your Congressperson are not TennCare decision-makers.) Will it make a
difference? YES, IT WILL. They want to hear why TennCare is important in
your life. How has TennCare made a difference for you and your family?
You are the expert and you are a voter. Write, call, fax, and email your
decision-makers today.
To find out who your state representative and senator is, call your County
Election Commission.
To contact Governor Bredesen:
Governor Phil Bredesen
State Capitol, First Floor
Nashville, TN 37243
Phone – 1-800-669-1851
Fax – 615-532-9711
Email – phil.bredesen@state.tn.us
NO CHILD LEFT BEHIND?
Students with Disabilities and NCLB
More than thirty years ago, a small group of families and their Arc sued the
state of Pennsylvania for its failure to provide a free and appropriate public
education for their children with disabilities—or for that matter, any
education at all. The result of that historic grassroots advocacy effort was
P.L. 94-142, the Education of the Handicapped Act, which we know
today as the Individuals with Disabilities Education Act, IDEA.
Before IDEA:
• Only 1 in 5 children with a disability went to school
• More than 1 million children with disabilities were excluded entirely from
the education system
• Students with disabilities were the last group of American children to be
guaranteed what can be considered the most fundamental civil right in this
country: a public education
When Congress revisited IDEA in 1997, the reauthorization process resulted
in a number of positive changes for students with disabilities and their
families, such as:
• Increased family involvement
• Mandated access to, participation in, and progress in the general
curriculum
• Focus on accountability for individual student progress and achievement
However, accountability at the system level continues to be dependent on
relatively ineffective state and federal monitoring, with little enforcement
capacity. Local education agencies (LEA’s) may be cited year after year for
repeated noncompliance, with no fiscal consequences. The federal
government fulfills approximately only 25% of the promised funding.
Today, in 2004, 6.5 million children with disabilities are served under
IDEA. Nearly 96% are in regular school buildings, although that statistic is
no guarantee that those students are served in general education settings, or
have the access to the general curriculum that IDEA has always promoted.
Federal statistics indicate that more than 85% of parents are involved in
planning their student’s individualized education program, or IEP. However,
this is likely to be an extremely variable number, dependent on the definition
of ―involved‖: attended the meeting? Participated as an equal in the
development of the plan? It should also be noted that no consistent method
exists to measure family satisfaction.
There has been a minimal increase in the graduation rate for students with
disabilities, 51.9% to 57.4% in five years, but students with disabilities still
drop out at twice the rate of their typical peers. Postsecondary education
remains an unlikely experience for those students who do graduate, since
only 9% of college freshmen report that they have a disability.
The employment picture is no brighter, with the unemployment rate for
adults with disabilities at 70%, as compared to the 6% overall
unemployment rate. In addition, among the 30% of adults with disabilities
who are employed, 82% of those with developmental disabilities earn less
than $5.50 per hour. Without dismissing the magnitude of IDEA’s impact,
students with disabilities, along with students with other types of minority
status, experience relatively dismal outcomes in American school systems.
• 70% of low income 4th graders can’t read at grade level
• 60% of African-American students read below capacity
• Nearly 3 million students are in special education primarily because they
can’t read
• The majority of students with learning disabilities aren’t identified until
ages 11-17
Given these troubling numbers cited above, in addition to careful
consideration as IDEA is again reauthorized, there is good reason to include
special education in any more global education reform effort.
In January 2002, the No Child Left Behind Act, NCLB, was signed into law.
Touted as the most sweeping piece of education legislation ever enacted,
NCLB is not a new law, contrary to popular belief. It is actually the
reauthorization of the Elementary and Secondary Education Act, which was
originally authorized in 1965. ESEA provides the framework for K-12
public education. It is noteworthy that in 2001, only 11 states were in
compliance with ESEA; and perhaps even more noteworthy that zero states
were in compliance with IDEA. NCLB, in over 1000 pages, redefines the
federal role. Although NCLB is general education legislation, students with
disabilities are now explicitly included as the responsibility of local and state
education systems. The premise of the law is that, for the first time in the
history of public education in the United States, federal dollars will come
with strings attached. States and local school systems will be held
accountable for student progress, for ALL children, including student
subgroups, which are defined as:
• Poverty
• Race
• Ethnicity
• Disability
• Limited English Proficiency (LEP)
The authors of NCLB describe four guiding principles:
• Stronger accountability for results, for both student performance and the
quality of instruction
• Increased flexibility and local control with many decisions to be made at
the state level
• Expanded family involvement, in their student’s education as well as at the
system level
• ―Focusing on What Works‖ which requires evidence-based instruction and
data collection
Most of the spirited public debate on NCLB, particularly as it relates to
students with disabilities, has focused on the amped-up definition of
―Accountability for Results.‖ States are required to implement statewide
accountability systems based on challenging standards in reading and math,
and science in 05-06.
Students must be tested annually in grades 3-8, and at least once in grades
10-12. The state of Tennessee has chosen TCAP and the Gateway exit
exams as its ―high stakes‖ tests.
The stakes are high indeed: for students, whether or not they will receive a
high school diploma; for schools and school systems, whether they will be
labeled as ―in need of improvement‖ and thereby subject to a range of
interventions, which can include school choice for families and at the
highest level, takeover by the state.
NCLB requires that states establish statewide progress objectives to ensure
that all groups of students reach proficiency within 12 years. In other
words, by 2014, every student in Tennessee, with certain narrowly defined
exceptions, will be expected to pass the TCAP and Gateway Biology and
Algebra exams, and attain a high school diploma.
School systems are required to collect data, which then must be broken out
(disaggregated) in each subgroup. Data is reported at the individual school
building level, the school system level, and at the state level. This
information must be made widely available to the community, in
understandable formats.
These statistics translate into Adequate Yearly Progress, or AYP. Student
AYP means proficiency, i.e., mastery of a set of grade level achievement
standards. Every subgroup, including students with disabilities, must make
AYP and reach grade level or the school doesn’t make AYP, and will
become subject to a list of graduated sanctions. Again, there is a complex
formula that allows for a few exceptions to this requirement. AYP at the
system level means the minimum level of improvement that states, school
districts & schools must achieve each year, eventually reaching 100%
proficiency.
Assessments of student achievement must provide for both alternate
formats and accommodations for students with disabilities. In this usage,
alternate assessment means alternate formats, (e.g., Braille), not alterations
in the content and material covered. Accommodations are also changes in
assessment materials or procedures, not in content or expected mastery.
Examples of accommodations include allowing extra time for some tests, or
having directions read aloud for tests other than assessments of a student’s
reading ability.
NCLB requires that assessments be accessible and valid with the widest
possible range of students, a principle known as universal design. An
example of universal design would be a test item that originally had lengthy
written directions, but was redesigned using illustrations or graphic images.
Remember, though, that the state decides which tests to purchase and the
companies that produce the tests decide which accommodations are
acceptable. The Gateway exit exams selected by Tennessee are not strong
examples of universal design, and allow relatively few accommodations.
The one and only exception to grade level standards is for students with the
most significant cognitive disabilities. Students who meet this description
typically have moderate to severe mental retardation, as measured by both
intellectual functioning (IQ) and adaptive behavior (ability to function in
daily activities). Students with traumatic brain injury or developmental delay
could also be included in this group.
States are allowed to define alternate academic achievement standards below
grade level, for only these students, anticipated to number no more than 1%
of the total testing group. The alternate academic standards must still be
―aligned with the state’s academic content standards‖ (to address math,
reading and science learning goals) and must reflect ―the highest learning
standards possible.‖ In Tennessee, assessment for these students usually
takes the form of a portfolio, or sampling of a student’s work and progress.
However, the vast majority of students receiving special education services
will be assessed with the same tests taken by their typical peers, with the
added options of alternate formats and allowable accommodations.
Certainly the advocacy community opposes what NCLB proponents
describe as ―the soft bigotry of low expectations‖ for students with
disabilities. However, in some school systems, students with disabilities
already have become the scapegoats for ―bringing down the rest of the
school’s scores.‖
The question becomes whether ―accountability for results‖ equals
accountability for TEST SCORES. Are standardized tests an appropriate and
fair measure of student achievement, for any or all students? When it comes
to the achievement of students with disabilities: is what matters being
counted? And is what is being counted meaningful?
NCLB presents numerous opportunities, perhaps most significantly, the
recognition that schools must be held publicly accountable for the progress
of students with disabilities. Other positives in this piece of legislation
include:
• Efforts to eliminate the achievement gap between students in subgroups
and their typical peers
• Focus on literacy for all students
• The use of research-based instructional strategies proven to increase
student achievement
• Increased family involvement for all families, at the individual child level,
as well as the school and system levels
At the same time, there are both challenges and risks in NCLB
implementation, including:
• Emphasis on one-size-fits-all ―high stakes‖ standardized testing
Achievement is measured by mastery rather than rate of progress
No provision for assessing functional/social/vocational skills for
students with/without disabilities
• ―Subgroup kids‖ already are being blamed for schools failing to make AYP
• Students with disabilities may be excluded from the mainstream school
environment, based on test scores or ―disruptive behavior‖
• Tension between the individualized education mandated by IDEA and the
uniform standards promoted under NCLB
Clearly, all those involved in the education of students with disabilities
should tune in to No Child Left Behind, and closely monitor NCLB-related
activities at the local, system and state levels. The authors of NCLB
acknowledge that as they considered the needs of students with disabilities,
they pictured students with the ability to read and to master math and science
skills. While a provision intended to address the achievement of students
with ―the most significant cognitive disabilities‖ has been put in place,
families and others in the advocacy community should closely monitor the
implementation and the interpretation of this complex, far reaching piece of
legislation as it affects the education of all students with disabilities.
holly lu conant rees
Director, Nashville Family Alliance Center, a community parent resource
center, serving families with students receiving special education services in
Davidson County. 615-812-2338 hlu1030@aol.com
The content of this article is also available in a PowerPoint presentation.
UPDATE ON TENNESSEE V. LANE
U.S. Supreme Court ruled 5-4 in Favor of the
Rights of People with Disabilities
The May 17, 2004 United States Supreme Court decision in Tennessee v.
Lane has been hailed as an important victory for people with
disabilities. On the 50th anniversary of the Brown v. Board of Education
decision, the U.S. Supreme Court ruled 5-4 in favor of the rights of
people with disabilities. Specifically, the Court found that people with
disabilities could sue states under the Americans with Disabilities Act
(ADA) for monetary damages due to lack of accessibility to courts. The
Court held that “As it applies to the class of cases implicating the
fundamental right of access to the courts, Title II constitutes a valid
exercise of Congress’ authority under Section 5 of the Fourteenth
Amendment.”
Justice John Paul Stevens, who delivered the Court’s opinion, stated, ―the
long history of unequal treatment of disabled persons in the administration
of judicial services has persisted despite several state and federal legislative
efforts to remedy the problem.‖ Justices Sandra Day O’Connor, David H.
Souter, Ruth Bader Ginsburg and Stephen Breyer concurred with Justice
Stevens. Those who dissented were Chief Justice William H. Rehnquist,
Justices Antonin Scalia, Anthony M. Kennedy and Clarence Thomas. The
Supreme Court decision can be accessed online at
http://www.supremecourtus.gov/opinions/03slipopinion.html
―The vision and intent of the ADA clearly was for the States to honor the
rights of people with disabilities and for money damages to be available
when those rights are violated‖ said Jim Ward, ADA Watch Founder and
President. Additionally he called people to continued action by stating that
―The disability rights community must take this decision as an indication
that we can and will win in our efforts to promote a fair and just society for
all Americans.‖
Update on the Plaintiffs’ Case
The plaintiffs’ case against the State of Tennessee is pro proceeding and is
currently set for trial on November 2, 2004. In August 2004 Judge Todd
Campbell denied class-action status in the case, stating that the plaintiffs had
not met the legal requirements to have such status granted. Additionally, on
June 28, 2004, all defendant counties filed cross-claims against the State,
and trial is currently scheduled to begin in that action in March 2005.
Background on the Lane and Jones Case
Plaintiffs George Lane and Beverly Jones, both with paraplegia, sued
Tennessee for failing to ensure that courthouses are accessible to individuals
with disabilities. The defendant counties are Polk, Bledsoe, Cannon,
Chester, Claiborne, Clay, Cocke, Decatur, Fayette, Grainger, Hancock,
Hawkins, Hickman, Houston, Jackson, Jefferson, Johnson, Lake, Lewis,
Meigs, Moore, Perry, Pickett, Trousdale and Van Buren.
Both plaintiffs were denied access to courtrooms on the second floors of
buildings lacking elevators. One plaintiff, Beverly Jones, worked as a court
reporter. The other, George Lane, was a defendant in a criminal case. The
state arrested Lane for failure to appear when he refused to crawl or be
carried up the stairs.
Lane and Jones filed suit under Title II of the ADA in 1998. The Tennessee
Attorney General moved to dismiss the case on sovereign immunity
grounds, arguing that Congress did not have the authority to subject the state
of Tennessee to suit. The U.S. District Court denied the state’s motion and
ruled that the case could go forward. The Tennessee Attorney General
appealed to the U.S. Court of Appeals for the Sixth Circuit, which affirmed
the trial court’s decision, and again said that the case could proceed. The
Tennessee Attorney General then appealed again – this time to the United
States Supreme Court.
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