Document Sample
4 InFormation

6 Help For Children With Special Needs Survey Invites Families To “Tell
It Like It Is”

10 The East Tennessee Technology Access Center Offers Freedom

14 It Is Time For A Real Choice In Long Term Care

17 Benefit Planning, Assistance and Outreach

18 What Families Are Telling Us Findings From Our Family Focus

20 TennCare Amendment Submitted To CMS

22 Life And Death - Terri’s Law

  Carol Westlake, Executive Director

Find Your Real Job – And Do It!
In October we celebrated National Disability Employment Awareness
Month. Historically, Disability Employment Awareness Month began as
“National Employ the Physically Handicapped Week” in 1945. In 1962, the
word “physically” was removed to acknowledge the employment needs and
contributions of individuals with all types of disabilities.

In 1988, Congress expanded the week to a month and changed the name to
“National Disability Employment Awareness Month.” An Awareness Month
provides a focal point for planning and conducting activities that highlight
the talent, skills, and employability of people with disabilities. We have
gone from a week to a month – but perhaps we need a whole year.
Employment is that important. It is a national disgrace that more than two-
thirds of working age adults with disabilities are unemployed. According to
the National Organization on Disability and Harris Survey of 2000, at least
two out of three people with disabilities who are unemployed want to work.

In Tennessee the unemployment rate for people with disabilities exceeds
70%, while our overall unemployment rate is about 5%. Where is the
outcry? Barriers to employment create a wide participation gap for people
with disabilities. We live in a society where a job, or more importantly, a
career is a major defining element of one’s identity. Work impacts your
ability to take part in other critical aspects of life, from home ownership to
transportation, access to health care, ability to socialize, socialize, pursuit of
advanced education, and active participation in one’s community.

There are many reasons for high unemployment among persons with
disabilities. Societal attitudes may cause employers to discriminate against
persons with disabilities. There are still many physical and communication
barriers in workplaces. Discrimination and barriers persist despite civil
rights protections from the ADA and efforts in “awareness campaigns.”
Problems in education and training also continue to exist. Almost thirty
years after the passage of the Individuals with Disabilities Education Act,
22% of students with disabilities fail to graduate from high school. Only
one-third of students with disabilities graduate to a job or some sort of
advanced education.

After leaving school, people with disabilities are faced with too few training
opportunities. Generic employment and training programs have been slow to
include and accommodate individuals with disabilities. The Vocational
Rehabilitation Services (VR) program is the disability employment program
upon which many individuals have relied. Our state’s VR program provides
training and other employment services using state funds that are matched
by federal funds. In Tennessee funding constraints have limited the ability of
the program to provide services to all those who need them. Since August of
2001 the state has had to limit the number of individuals it serves. Today,
VR is serving only half the number of individuals it was previously able to
serve. Underfunding employment services may seem “penny wise,” but it is
“pound foolish.” Many unemployed people with disabilities have to rely on
public benefit programs to survive.

The issue of benefits is also a critical one when issues of employment are
raised. Social Security payments in the form of SSI or SSDI and health
benefits from Medicaid (TennCare) or Medicare have been a lifeline for
many people with disabilities. However, by design they often keep people
poor and dependent and often serve as a disincentive to work. That is
changing. In this and previous issues of the Coalition Quarterly you can read
about new work incentive programs through Social Security and the
availability of Benefits Planning Specialists who can help you learn how to
work without losing the safety net needed to make the transition from
unemployment to employment.

National Disability Employment Awareness Month may be over, but the
work must go on. Think work. Think jobs. Think careers. Talk about the
importance of employment, communicate with policymakers. Tell them to
support policies that support employment.

A job is a significant prerequisite to economic self-sufficiency and a key to
successful integration in community life. Meaningful work is associated
with greater independence, productivity, social status, financial security, and
quality of life.

 Charlotte Perkins Gilman wrote, “The first duty of a human being is to
assume the right functional relationship to society, more briefly, to find your
real job, and do it.” That is good advice.

    Legislator Awareness Day at
             Capitol Hill
                        March 15, 2005
This is the day set aside for consumers, families, advocates, and
friends to visit their legislators to share concerns and raise
awareness of the needs of Tennessee’s children and adults with
disabilities and their families.

Plan to come to Nashville.
Make your voice heard!
Help For Children With Special Needs
Survey Invites Families To “Tell It Like It Is”

Tennessee families of children and youth (birth to age 22) who have
disabilities, chronic illnesses or genetic conditions. These families are
needed to participate in a comprehensive survey designed to inform
researchers, policy-makers and advocates about family experiences
getting health care and related services for their children.

Family Voices at the Tennessee Disability Coalition has been coordinating
with researchers at Vanderbilt University School of Nursing and with State
Maternal and Child Health Division officials to develop a survey that will
gather information from and about families who have children with special
health care needs (CSHCN). Survey planners want to know how well
families are coping with and managing the needs of their children. Are they
satisfied with the availability and quality of services and supports their
children use or need? What services do they presently use? Are they
satisfied with their providers? What needs are unmet?

Up to now, there has been scant, mostly anecdotal, information about
CSHCN families. The need for more detailed and precise information has
become increasingly important to Congress as well as to state legislators and
administrators. Family stories are still important when educating, advising or
advocating about policy changes and program supports; only now there is
greater emphasis on having data to show that a family story is part of a trend
and not an isolated case.

Here’s how the survey will be distributed, processed and reported.

• Family privacy and confidentiality will be respected. No information that
identifies or names families will be used in any reports. Surveys will be
coded with numbers to protect family identities.

• Participation in the survey is entirely voluntary. A separate postcard
(already stamped and addressed to Family Voices at the Coalition) will be
made available for families to send their names and contact information, IF
they want to be contacted in the future to receive reports on the survey
findings and to participate in any follow-up surveys.

• All surveys will be sent to and processed by researchers at Vanderbilt
University School of Nursing. Information obtained from the surveys will be
recorded into a special computer software program tailored for this purpose.

• The survey will be distributed or made available using a variety of

- Survey packets will be mailed to families on the Family Voices of
Tennessee database and to families served by the Children’s Special
Services (CSS) program of the State Department of Health, Maternal and
Child Health Division.

- Programs and service providers will be invited to distribute survey packets
to CSHCN families they serve. The list might include the Tennessee Early
Intervention System (TEIS), hospitals, schools, and organizations that serve,
support, and/or advocate on behalf of CSHCN and families.

- There will be a computer based version of the survey (a PDF file) that can
be downloaded to any computer with access to the Internet. The survey
would need to be printed out for completion by hand. Families who choose
to access the survey in this manner would have to provide their own
envelope and pay for postage to have it sent to the specified address
(Vanderbilt University School of Nursing).

- There also will be an online computer form version that can be filled out
online and submitted directly to Vanderbilt.

• Families needing or requesting assistance to fill out the survey forms are
encouraged to contact Family Voices at the Coalition (toll free 1-888-643-
7811; or 615-383- 9442; ext. 40). One of our three regional family resource
specialists can return the call and record answers at the direction of the
family care giver/parent.

Ultimately, the survey findings will be reported to the federal Maternal and
Child Health Bureau, which is providing much of the funding for the survey
activities. The funds are part of the Family-to-Family Health Information
Center grant awarded to Family Voices at the Coalition in 2002. The grant
also supported the family focus groups (discussed in a separate article) and
enabled the hiring of three part-time CSHCN parents to serve as family
resource specialists in their respective region of the state. They are providing
information and assistance to families to help them learn about and access
services and programs for their children.

               About Family Voices of Tennessee:
Family Voices of Tennessee (FV-TN) is the state chapter of Family Voices
and operates as a program of the Tennessee Disability Coalition. FV-TN is a
family-directed program that assists families of children with chronic
illnesses, disabilities or other special health care needs to locate, learn about,
access or advocate for health care and related services for their children. FV-
TN also works with providers, administrators, and families to create policies
and programs that reflect family-centered principles and promote
family/professional partnerships.
FV-TN Website:
Toll Free Family Line: 1-888-643-7811
FV-TN Staff at the Coalition: Dara Howe, Director 615-383-9442

Charlene Harmon, West TN Family Resource Specialist 901-327-4612

Julie Sullivan, Middle TN Family Resource Specialist 931-686-3353

Donna Graham, East TN Family Resource Specialist 423-234-2334

Karen Dockrey, Parent Consultant TN Newborn Hearing Screening Program
615-855-1516 Email:

The Family Voices of Tennessee Family-to-Family Health Information
Center is funded by a grant from the US Department of Human Servces’
Health Resources and Services Administration, Maternal and Child Health
Bureau (Project #1 H84MC00004-03-00).
Member Feature
The East Tennessee Technology
Access Center Offers Freedom
“Freedom” is a concept that most Americans cherish. For people with
disabilities, freedom takes on added meaning that many people take for
granted: Freedom to go where you want to go without barriers, a free
appropriate education with your peers, freedom to live in your
community rather than in an institution or nursing home, and a choice
of meaningful employment opportunities. However, to obtain these
freedoms, many people with disabilities need assistive technology.

The East Tennessee Technology Access Center offers people with
disabilities in 24 counties of East Tennessee a place to learn about devices
that can help them lead more productive, independent lives. ETTAC is a
nonprofit agency founded in 1988 by Dr. Lois Symington and a group of
parents and adults with disabilities. ETTAC’s first office was in one room at
the University of Tennessee, Knoxville with computers donated by
Lockheed Martin in Oak Ridge. The Center’s goal and focus has always
been to enable people with disabilities to live in the mainstream of society
through innovative uses of technology.

Tennessee Early Intervention Services provides funding for young children
from birth to three years of age to gain access to assistive technology. This
may be a simple communication device or battery-operated toys that
children can play with by just touching a switch. One young gifted child
who must lie down at all times has learned to use a computer through finger
movement and enjoys playing video games on it.

Through generous donations of various organizations such as UPS, Levi
Strauss and Junior League as well as many individuals, ETTAC adapts and
distributes battery-operated toys at Christmas to over 100 children who
cannot use their hands to play with typical toys. Access to toys gives
children the basics of playing and sharing with other children, and play is a
building block for language and learning. The same switches that are used to
operate toys can be used to access a computer when the child is ready for
Other types of technology are available for children who do not learn easily
or who cannot turn pages in a book. Through support from United Way and
other sources, ETTAC teaches children who were once considered unable to
read and learn. Their disabilities range from learning and reading disabilities
to spastic cerebral palsy. One of ETTAC’s newest outreach programs is
Storytime A.T. the Library. Using adapted books, communication devices,
and software, children with disabilities are joining their peers in reading at
local libraries.

ETTAC’s largest contract is through the Tennessee Division of
Rehabilitation Services, which provides funds to help rehabilitation clients
identify their technology needs. A special keyboard, mouse, or voice
recognition software can be used by those who cannot access a computer
using standard equipment. ZoomText or JAWS help clients with visual
impairments. Closed Circuit Televisions (CCTVs) can enlarge print for
people who have diabetes or macular degeneration. Employment Skills
Building services provide literacy training to young adults who exited the
school system unable to read, thereby enhancing their employment
opportunities. These clients can also learn about money and other basic
skills using interactive, accessible software. The Tennessee Council on
Developmental Disabilities has funded a three-year project that supports the
self-employment plans of individuals with disabilities and also identifies the
barriers and supports needed to help people with disabilities become

When the senior population started talking about getting the state to fund
more home and community-based services programs for people who need
help remaining in their homes, ETTAC said, “You are going to include
adapted aids in the list of services provided, aren’t you?” The Tennessee
Disability Coalition helped promote that idea along with the legislature and
TennCare’s long-term care division. This has led to the development of a
training manual for senior service providers. The result has been increased
awareness that even the simplest, most inexpensive devices can help their
clients with activities of daily living. These devices can assist with bathing,
grooming, dressing, eating, and cooking and include products to help people
who are losing their vision, hearing, or ability to speak.

ETTAC offers training on a regular basis to help people with disabilities,
their families, and professionals learn about specific devices as well as how
to use them. Vendors of low vision equipment and communication devices
also provide training. ETTAC holds workshops that range from information
about devices to help people who have Traumatic Brain Injury to teaching
families how to integrate simple technology devices into everyday routines.

One of ETTAC’s newest programs is the HeartSong Center for Accessible
Music and Art, which provides accessible music and art activities to children
with disabilities. Each summer, ETTAC holds day camps funded by local
foundations that introduce children to music and art activities that provide
opportunities for new ways of expression and creativity. ETTAC has
recently contracted with an art educator to conduct classes that combine art
history with hands-on art activities in a language rich environment.

ETTAC’s policy is that individuals with disabilities have the right to choose
the devices that work best for them. ETTAC does not sell any product or
receive an incentive for recommending products, thereby providing unbiased
information on products, prices, and sources. Staff provide individuals with
information on funding sources as well as their legal rights to equal access in
learning and working.

Thousands of freedom machines are available to people with disabilities, but
many people still do not have access to them. ETTAC is a member of the
national Alliance for Technology Access, which helped produce a one-hour
documentary, Freedom Machines, which illustrates how technology
empowers people. This film also presents some of the frustrations related to
obtaining access to devices as well as unresolved issues we have in this
country in assuring equal access. The Tennessee Technology Access
Project’s five statewide centers and the Tennessee Disability Coalition are
working to promote the documentary.

If you would like to show Freedom Machines or want to know more
about it, you may call the Coalition, ETTAC at (865) 219-0130, or
TTAP at 1-800-732-4049.

It Is Time for Real Choice in Long Term Care
People with disabilities, for many years, have called for improvements in
long term services and supports because they do not have enough quality
services and supports in the community to meet their needs. Individuals
continue to wait for services; receive inadequate or poor quality services;
and are often forced to live in more costly nursing homes and other
institutions away from family, friends, and community life. Medicaid is the
primary funding source for long term care services. Medicaid spending is
heavily weighted to supporting individuals in institutions rather than in
community based settings. States must apply to Medicaid for special
permission to spend long term services dollars in community-based settings
instead of institutions. They must seek a waiver of federal law. In Tennessee
a few small “Medicaid waivers” provide limited home and community-based
services to a limited number of people who are elderly or have disabilities.

The 1999 U.S. Supreme Court decision in Olmstead v. L.C. and E.W. has
created some pressure on states to redesign their systems to better meet
individuals’ needs at home and in the community. The Federal government
must also support states to help them comply with the Olmstead decision.
The Federal Medicaid law needs to be reformed to allow states to more
easily meet the unmet needs of people with disabilities in the community.
There have been several proposals made to Congress that would help begin
to rebalance and expand the long term care system and to provide quality
supports and services in the community. One of those proposals, long
supported by those proposals, long supported by national disability rights
organizations, is the Medicaid Community- Based Attendant Services and
Supports Act of 2003 (MiCASSA, S. 971). It was introduced on May 1,
2003. The National Council on Independent Living (NCIL) has written the
following summary of MiCASSA.

Summary by NCIL

“MiCASSA gives people real choice in long term care options by reforming
Title XIX of the Social Security Act (Medicaid) by ending the institutional
bias. MiCASSA allows individuals eligible for Nursing Facility Services or
Intermediate Care Facility Services for the Mentally Retarded (ICF-MR) the
opportunity to choose instead a new alternative, “Community-based
Attendant Services and Supports.” The money follows the individual!

 In addition, by providing an enhanced match and grants for the transition to
Real Choice before October 2007 when the benefit becomes permanent,
MiCASSA offers states financial assistance to reform their long term service
and support system to provide services in the most integrated setting.
Specifically what does this bill do?

• Provides community-based attendant services and supports ranging from
assistance with:

- Activities of daily living (eating, toileting, grooming, dressing, bathing,

- Instrumental activities of daily living (meal planning and preparation,
managing finances, shopping, household chores, phoning, participating in
the community), and

- Health-related functions.

• Includes hands-on assistance, supervision and/or cueing, as well as help to
learn, keep and enhance skills to accomplish such activities.

• Requires services be provided in THE MOST INTEGRATED SETTING
appropriate to the needs of the individual.

• Provides Community-based Attendant Services and Supports that are:

- based on functional need, rather than diagnosis or age;

- Provided in home or community settings — school, work, recreation or
religious facility;

- selected, managed and controlled by the consumer of the services;

- supplemented with backup and emergency attendant services;

- furnished according to a service plan, including voluntary training on
selecting, managing and dismissing attendants, agreed to by the consumer;

• Allows consumers to choose among various service delivery models
including vouchers, direct cash payments, fiscal agents and agency
providers. All of these models are required to be consumer controlled.

• For consumers who are not able to direct their own care independently,
MiCASSA allows for “an individual’s representative” to be authorized by
the consumer to assist. A representative might be a friend, family member,
guardian, or advocate.

• Allows health-related functions or tasks to be assigned to, delegated to, or
performed by unlicensed personal attendants, according to state laws.

• Covers individuals’ transition costs from a nursing facility or ICF-MR to a
home setting. Costs may include rent and utility deposits, bedding, basic
kitchen supplies and other necessities required for the transition.

• Serves individuals with incomes above the current institutional income
limitation — if a state chooses to waive this limitation to enhance the
potential for employment.

• Provides for quality assurance programs which promote consumer control
and satisfaction.

• Provides maintenance of effort requirement so that states can not diminish
more enriched programs already being provided.

• Allows enhanced match (up to 90% Federal funding) for individuals whose
costs exceed 150% of average nursing home costs.

• Between 2003 and 2007, after which the services become permanent,
provides enhanced matches (10% more federal funds each) for states which:

- begin planning activities for changing their long term care systems, and/or

- include Community-based Attendant Services and Supports in their
Medicaid State Plan.

How does it promote systems change?

• Provides grants, guided by a Consumer Task Force, for Systems Change
Initiatives to help the states transition from current institutionally- dominated
service systems to ones more focused on community- based services and
• Calls for national 5-10 year demonstration project in five states to enhance
coordination of services for non-elderly individuals dually eligible for
Medicaid AND Medicare.

The Update

After its May 1, 2003 introduction by Senators Tom Harkin (D-IA) and
Arlen Specter (R-PA), the bill was referred to the Committee on Finance. On
April 7, 2004, there was a Senate Hearing held with many advocates from
across the nation in attendance. No further action has been taken. In the
House of Representatives, Rep. Danny Davis (D-IL) and John Shimkus (R-
IL) have introduced the House bill, H.R. 2032.

On October 5, 2004, Health and Human Services Secretary Tommy G.
Thompson announced $31 million in grants to 31 states to help people with
disabilities or long-term illnesses live in their homes and participate fully in
community life.

Approximately $2 million is granted to seven states (IL, LA, ND, NC, MS,
VA, and TN) under the “Rebalancing Initiative” to help states prevent and
correct inappropriate placement of individuals in institutions. In Tennessee,
this grant will help support the work needed to begin establishing
community infrastructure and processes and to support implementation of a
pilot project in Davidson and Sullivan counties. The pilot project, managed
through the Blue Cross Blue Shield MCO, will provide supports for people
in the community.

The Tennessee Disability Coalition provided a letter of support for the
Tennessee’s Rebalancing Initiative Proposal and has representatives on the
TennCare workgroup and advisory committees that are providing input into
the planning process and pilot project.

For more information on MiCASSA you may visit the
ADAPT website at or NCIL’s
website at
Benefits Planning, Assistance and
The Benefits Planning, Assistance and Outreach (BPA&O) Project is a
federally-funded initiative to educate and assist individuals with disabilities
receiving SSI/SSDI, and those who support them, to anticipate and plan for
changes that may occur in their state and federal benefits as a result of
employment. These benefits include SSI/SSDI, Medicaid, Medicare, TANF,
Food Stamps, subsidized housing, worker’s compensation, and
unemployment benefits.

Protection and Advocacy for Beneficiaries of Social Security

The Protection and Advocacy for Beneficiaries of Social Security (PABSS)
is a federally funded initiative to assist individuals receiving SSI/SSDI who
are trying to return to or begin working. This Project is staffed by a licensed
attorney and advocate who are able to provide legal and advocacy assistance
with return to work issues.

How Can These Projects Help Me?

These Projects are for people with disabilities who receive either
Supplemental Security Income (SSI) or Social Security Disability Insurance
(SSDI) or both. The Social Security Administration has many “Work
Incentives” that may make it worthwhile for you to go back to work.

BPA&O: The BPA&O staff can explain the “Work Incentives” programs of
Social Security. There is a possibility that you may no longer need to rely on
Social Security. A trained Benefits Specialist will sit down with you and
gather information that can help you know what will happen when you begin
working. The Specialist will help you understand the effects working may
have on your federal and state benefits and let you decide what you want to
do. There is no cost to consumers for this service.

PABSS: If you decide to return to work, you may need advocacy or legal
assistance with return to work issues. The PABSS Program can assist you
with these issues. Such issues might include accessing needed services,
supports, and accommodations. If you are planning on returning to work and
are currently using vocational rehabilitation services and other employment
related services, you may need advocacy assistance in dealing with your
provider. There is no cost for these services.

What Should I Do If I Want to Return to Work But I Am Afraid of
Losing My Benefits?

If you want to return to work but are afraid about what will happen to your
state and federal benefits, you should contact a Benefits Specialist to set up
an appointment. They will inform you about the different “Work Incentives”
such as the one that allows you to keep your Medicaid or Medicare benefits
while you work. With this information, you can make an informed decision
about going to work.

How Do I Contact a PABSS Advocate?

If you need advocacy or legal services concerning work issues, contact your
statewide PABSS project at: Tennessee Protection and Advocacy, Inc.
PABSS Project 1-800-342-1660-voice 1-888-852-2852

How Do I Contact a BPA&O Planner?

The BPA&O Project has divided the state geographically. To contact
your local Benefits Counselor:

Statewide Independent Living Council of Tennessee 1-888-839-5333- voice
(615) 292-7790 – TTY

Center for Independent Living of Middle Tennessee
1-866-992-4568 – toll free voice (615) 292-5803 – local voice
(615) 292-7790 – TTY
What Families Are Telling Us
Findings from Our Family Focus Groups
In the fall of 2002, family focus groups were held in two rural and two urban
locations covering the three grand divisions of Tennessee (Greeneville,
McMinnville, Nashville, and Memphis). Facilitating the focus group
discussions were Dr. Melanie Lutenbacher, Vanderbilt University School of
Nursing, and Dara Howe, Director of Family Voices at the Tennessee
Disability Coalition. The focus groups were funded through a federal grant
to the Coalition and were intended, in part, to identify areas of concern to
families for a broader study using a comprehensive family survey.

Parents identified seven broad areas where there were important issues or
concerns related to services for their children with special health care needs
and their family. Within each of these broad areas many related issues
emerged. Overall, most parents:

• expressed frustrations about a lack of knowledge related to what was
known about their child’s condition, what resources were available to them,
and how to access resources; poor communication between and among
families and service systems, including the health care system (providers and
insurance programs), early intervention programs and the school system;

• identified a lack of skills and/or knowledge by many of the various
providers (physicians, nurses, therapists, teachers, insurance, etc.); and,

• identified overall difficulties with transitions (between one system and
another, during transitions from one developmental milestone to another,
etc.) Some of these issues or concerns were experienced by a few families,
but often they were experienced by many families across the state.

1. Issues related to family or parent support – within this area, some families
indicated strengths in systems and available resources, but most parents told
us there was an overall lack of support to them and their family. This
included a lack of:
• Supportive facilities where children with disabilities can meet and socially

• Available (local) resources or information about available resources;

• Available respite care support (facilities, adults, family members or

• Supportive facilities for teenagers/ adolescents with disabilities;

• Information about available supports to families;

• Support from employers;

• Support from school systems;

• Support from insurance programs;

• Support from related services;

• General knowledge about how to provide support to the family;

• Time to meet and gain support from other families;

• A liaison between service systems (school, providers, insurance, etc).

2. Issues related specifically to the school system – within this area, some
families shared positive experiences with school systems but many parents
told us of great difficulties in getting the kind of setting and services that
their child needed. The areas most often identified by parents were:

a. Related Services

• Discrepancies between identified need(s) and service(s) provided

• Inconsistent and few services

• Insufficient time

• Poor transition from Early Intervention Services to school system
• Lack of expertise (Occupational and Physical therapy, Speech/ Language,
Nurses, Behavioral, Psych.)

• Medication administration in schools (teachers/staff giving medications.)

b. Poor Communication

• Between teachers/school system and parents

• About available programs

• About school policies and the legal rights of the child

• Between teacher/school with primary care provider

c. Academic Services

• Varied/inconsistent (some teachers do well with children and disabilities)

• Lack of individualized academic/ educational plan

• Varied opinion about a specific problem

• Lack of expertise in dealing with children with special needs

• Lack of appropriate programs, including summer programs

• System not willing to pay for additional testing/intervention without push,
legal action or parents’ paying for services.

• School not a fun place for social interaction between children with special
needs but often the only opportunity/venue where they can interact.

3. Issues related to coordination of care. Within this area, parents provided a
lot of information related to the disconnect between services and lack of
coordination among the primary care provider, specialists, therapists, and
patients (often described as no “team effort”). Parents described not being a
part of many care decisions related to their child. Some parents described the
lack of specialists or professionals with specific knowledge and experience
needed to care for their child. Difficulty in coordinating care because of
insurance issues, time needed for referrals and the length of time it took to
get appointments was mentioned by many parents.

4. Problems related to an overall lack of information were mentioned by
many parents. The lack of information described by parents was related to a
lack of medical, insurance, and school system information. Overall, parents
described great difficulty in trying to obtain information about their child’s
condition, available resources or care choices, programs or related services
available, and their legal rights.

5. Issues related to the Provider and Patient (Family) relationship. This area
included general lack of providers’ knowledge about child’s conditions,
available resources or insurance coverage. Some families perceived a
difference in treatment between providers and families on TennCare and
those with private insurance. Although some parents described excellent
communication with their child’s providers, many described poor
communication between themselves and the providers, a lack of
understanding of their family situation and a devaluing of their expertise
about their child. Often parents described lengthy waiting periods between
identification of a need or problem and a “solution” or appropriate treatment.

6. Another major area identified by parents was related to the many parent
roles that parents with children with special health care needs take on. Roles
include being an expert about your child, protecting your child from
uninformed or incompetent professionals, and being an advocate (and
“fighter) to get what your child needs. Other parents described feeling
inadequate because they felt guilty or upset because they couldn’t help their
child or didn’t know what was available.

7. The last major area identified by parents was related to problems with
insurance. Issues most often identified by parents were related to being
treated unfairly because of insurance, a strong need for more parent
advocates working with insurance companies, and issues related to the
denial of care or services. Other issues identified by parents related to
difficulties getting appointments because of a lack of TennCare providers,
poor pay systems to providers, limited services, large out of pocket expenses
for families, transportation difficulties, and limited alternative treatments
included in plans.
 TennCare Amendment Submitted
            to CMS

 TennCare, Tennessee’s Medicaid program, operates under a “waiver” from
the federal Centers for Medicare and Medicaid Services (CMS). The waiver
allows it to be exempt from certain federal regulations. On September 24,
2004, the Governor of Tennessee submitted a formal request to CMS to
amend its Medicaid waiver. The proposal would make very significant
changes, affecting many key elements of the program. The changes would
affect every person served by TennCare.

TennCare has been a healthcare safety net for hundreds of thousands of
Tennesseans with disabilities and chronic conditions who do not have access
to other health insurance. People with disabilities are especially vulnerable
to many of the program changes that have been requested. Some of those
changes are described below.

Medical Necessity

The last issue of the Coalition Quarterly included an article that outlined the
changes to the state’s definition of “medical necessity” and its potential
impact on people with disabilities. Federal law requires that the services paid
for by TennCare be those that are covered by the program because they are
medically necessary for the individual receiving the services. Every state
develops its own definition of what is medically necessary. The new, much
more limited, definition of medical necessity means that many services
provided by TennCare that are essential to the functioning and well-being of
people with disabilities will now be excluded. This means that everyone on
TennCare is likely to experience a reduction in services now available to

The current TennCare definition protects people with disabilities by defining
medically necessary services and medicines using terms such as “most
appropriate” and “good medical practice.” The new definition puts people
with disabilities at risk using terms such as “least costly and adequate.”
These are not medical terms. This means that in many situations, simple
observation could be substituted for real diagnosis and treatment, as in the
case of a young child exhibiting symptoms of autism or even brain cancer.
In addition, many people with severe disabilities or chronic illnesses, such as
mental illness, epilepsy, multiple sclerosis, HIV/AIDS, cancer and
Alzheimer’s, may only have access to older, less effective medications with
potentially serious side effects rather than newer, more effective but
expensive medications essential to their well being.

Benefit Limits

In addition to reducing the scope and type of services available to TennCare
enrollees, the proposed waiver seeks permission to impose additional benefit
limits on part of the TennCare population. These limits will cap specific
services available. For example, some enrollees will be limited to 6
prescriptions per month and 12 doctors’ visits per year. Limits will not be
imposed on children. Some individuals with disabilities will also be exempt
from these types of limits. Many individuals with disabilities will be subject
to the limits.

Only people with disabilities who fall into the following categories are
protected from limits on the number of prescriptions and other services they
may use:

• Persons receiving Supplemental Security Income (SSI);

• Persons eligible for Medicaid because they are “Medically Needy” as aged,
blind or disabled;

• Persons who are receiving Medicaid institutional services;

• Persons who are receiving Medicaid Home and Community Based

• Persons eligible for a mandatory or optional Medicaid category who are
receiving SSDI.

The proposal adds a new requirement for sliding scale monthly premiums
for persons at or above 100% of the federal poverty level, and intends to
increase those amounts annually by as much as the rate of medical inflation.
More than 60,000 adults who are currently on Medicaid and who do not pay
premiums will be shifted out of Medicaid and into TennCare Standard.
Many of these individuals will have to pay premiums after the shift. This
group includes people with disabilities who are in the two-year waiting
period for Medicare to kick in. These are Medically Needy enrollees who
have qualified because they have incurred catastrophic medical expenses
that cause them to “spend down” into eligibility. They are in very dire
financial straits, even though they may have incomes above the poverty

Pharmacy Services

The TennCare waiver amendment is aimed at saving a projected three billion
dollars annually through changes in pharmacy services. However, the
planned reductions are six times greater than former Governor Don
Sundquist’s cuts in 2002, which resulted in many people losing their
TennCare benefits. Regrettably, these changes, like the change in the
definition of medical necessity, may cause great harm to people with
disabilities. In fact, there is little doubt among disability advocates that it
will be impossible to achieve such huge savings without affecting TennCare
enrollees who are very sick people, including those who have severe and
persistent mental illnesses.

The amendment proposes a new drug formulary, or list of drugs that can be
used, that severely restricts both the number and types of medications that
will be covered, as well as limiting the number of prescriptions per month
for many people. The waiver amendment further excludes coverage entirely
of two classes of drugs essential to people with disabilities: gastric acid
reducers and antihistamines. These common drugs are critical for many
people. For example, people with mental retardation rely on gastric acid
reducers to address several important problems, including neuromuscular
disorders and oral sensitivity problems. Antihistamines are essential for
people with asthma.

Spending Cap
The TennCare Waiver Amendment sets a self-imposed spending cap on its
own Medicaid expenditures at 26% of state tax revenues. Tennessee is
seeking approval in advance for unprecedented authority to act without
federal oversight to limit enrollment, eliminate and/or reduce benefits and
services, and raise premiums and co-payments. The existence of the
spending cap is almost certain to result in the reduction or elimination of
services fundamental to the health and well being of people with disabilities.

What can you do to make a difference?

The federal Centers for Medicaid and Medicare Services (CMS) are
considering Tennessee’s waiver amendment. The proposed changes cannot
go into effect without CMS approval.

Contact CMS and tell them the amendment to the TennCare waiver is
unacceptable as it stands. Tell them why TennCare is important in your life
and how it has made a difference for you and your family. Your opinion

Write, Call, Fax, or Email the decision-makers today!

Mark McClellan, M.D., Administrator
Centers for Medicare and Medicaid Services
Dept. of Health & Human Svcs.
Hubert Humphrey Bldg.,
Rm 314-G
200 Independence Ave., SW
Washington, DC 20201
Phone: 202-690-5727
Fax: 202-690-6262

US Senator Bill Frist
Office of Senator Bill Frist
461 Dirksen Senate Office Building
Washington, DC 20510
Phone: 202-224-3344
Fax: 202-228-1264
Web form for email:
US Senator Lamar Alexander
Office of Senator
Lamar Alexander SH-302
Washington, DC 20510
Phone: 202-224-4944
Fax: 202-228-3398
Web form for email:

Life and Death - Terri’s Law
Across the country disability advocates have been riveted and mobilized by
the case of Terri Schiavo, a Florida woman who is at the center of a legal
battle. Terri Schiavo collapsed in her home in 1990 and subsequently fell
into a coma. She came out of the coma after a few weeks and has been in
what has been termed a “locked-in state” since that time, having sustained a
severe brain injury. She is reported to be responsive to stimuli and able to
communicate in limited ways. Terri has a gastric feeding tube that provides
her with food and water.

In 1998, Terri’s husband petitioned the court to remove the feeding tube. If
the feeding tube is removed, Terri will die from dehydration and starvation.
Terri’s parents and friends have fought to keep from having the feeding tube
removed through petitions to the courts. The Governor of Florida intervened,
as did the state legislature, passing “Terri’s Law” in 2003. Terri’s Law is
legislation that had allowed Governor Jeb Bush to order Terri Schiavo’s
feeding tube to be reinserted.

On September 23, 2004, the Florida Supreme Court unanimously ruled that
Terri’s Law violates the separation of powers between the judicial,
legislative and executive branches of government. On Thursday, October 21,
2004, the Florida Supreme Court denied a request by attorneys for Governor
Jeb Bush to rehear a case regarding Terri’s Law, deciding 4-3 to not
reconsider its unanimous decision saying Terri’s Law violated the separation
powers clause of the state constitution.

The issues surrounding the Terri Schiavo case in Florida have sparked
controversy throughout the nation, but especially in the disability
community. The “right to life” movement has embraced her as a cause to
prove “sanctity of life.” The “right to die” movement believes she is too
disabled to live and therefore better off dead. Yet the life-and-death issues
surrounding Terri Schiavo are first and foremost disability rights issues —
issues which affect millions of Americans, old and young, with disabilities.

In this matter of living as a disabled person, those of us who live with
disability are the experts — not husbands, not parents, not doctors. We know
that life with a disability is worth living, and we know that what makes life
awful for us is the attitude of “better off dead” that drives much of the
thinking surrounding people like Terri Schiavo.

There are some physicians who believe that people with disabilities who are
ill and deemed incompetent do not deserve the same type of health care that
“competent” people would receive. A recent state law in Tennessee allows a
physician or other health care provider to appoint a substitute decision-
maker, called a surrogate, for medical decisions under certain conditions
(TCA 33-3-219). If you are not able to communicate or lack the “capacity”
to make health care decisions, and if you have not previously made your
wishes known, a health care provider may appoint someone else to make
decisions for you. It may not be the person you would choose.

You have the right to make your own decisions about accepting or refusing
medical care and treatment. Even if someone may not be capable of
informed consent, courts of law will give weight to any expression of
preferences by the person. An advance medical directive is a written
statement (i.e., living will, durable power of attorney for health care, do-not
resuscitate order) about the provision of health care when a person is

Health care practitioners are duty bound to provide all necessary, proper and
available medical treatment as dictated by standard medical practice, except
when legally executed advance medical directives, informed consent from a
surrogate or a court order specify otherwise. By engaging in conversations
with your family and physician(s) and detailing your wishes in an advance
medical directive, you can ensure that your wishes will be adhered to in the
event that you become incapacitated.

Too many of us, with and without disabilities, avoid thinking or talking
about these issues. We avoid putting the documentation in place that will
protect our rights if and when we are unable to communicate our wishes.
Can he think? Hear? Communicate? These questions apply to thousands of
people with disabilities who, like Terri Schiavo, cannot currently articulate
their views and so must rely on others as substitute decision-makers. Take
control. Be sure that you make the decision about who can speak for you if
you cannot speak for yourself.

This is especially important for those of us who experience disabilities.
There is often bias against disability and ignorance about the support
systems and successful coping strategies that preserve autonomy, meaning
and pleasure in life. Some people believe that “incompetent” ill and disabled
people do not deserve the same type of health care that “competent” people
would receive. The fear of disability and the resulting bigotry adhered to by
most non-disabled Americans is often cited by people with disabilities as
one of the most difficult barriers to overcome. In a media column, Bill Press
stated, “I wouldn’t want to live like that, would you?” We respond: like
what? Terri Schiavo has been characterized as “...a brain-damaged woman
who has been kept alive artificially.” Meant to signal horror, the concept has
no real meaning to us who live by “artificial” means.

Terri Shiavo is kept alive by a feeding tube. It is a well-known fact among
those of us who live with disabilities that a feeding tube is a low-tech
support, and people who use them can and do live full and meaningful lives.
It was invented in the nineteenth century and relies on nothing more than
gravity to make it work. Is a person on dialysis being kept alive artificially?

Is a person taking insulin being kept alive artificially? Is a person who
undergoes open-heart surgery, or cancer treatment, or intensive care in a
hospital being kept alive artificially?

Protect yourself and those you care about. Think, talk, plan, and act –Today.

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