Archive for October, 2008

Fulfilling the Promise: Tennessee Services and Supports for Persons with Developmental Disabilities other than Mental Retardation

This article by UCP Executive Director Deana Claiborne appeared in the February 2008 edition of Breaking Ground, the magazine of the Tennessee Council on Developmental Disabilities
Click here to download a pdf of the magazine.

Charlette Zemba says she was born with the wrong disability — at least in Tennessee. “If I had mental retardation, I could be getting the services I need,” says Charlette, who now lives in a Tennessee nursing home. “This is not right for me, but I have no where else to go.” Charlette has severe cerebral palsy. She requires personal supports for virtually every activity of daily living because she is not able to walk or use her arms and hands. She was sent to live in a nursing home after the death of her mother, who was her primary caregiver. “My father just couldn’t take care of me,” says Charlette.

Charlette is one of many Tennesseans with developmental disabilities other than mental retardation who fall between the cracks in Tennessee. Because they were born with the “wrong” disability, they are denied access to Tennessee’s only system of services and supports for persons with developmental disabilities, which is now administered by the Division of Mental Retardation Services under the State Department of Finance and Administration.

Rudy and Tammy are the parents of 14-year old Morgan, who has autism. According to her parents, “At home, our days consist of endless prompting to help Morgan transition. From waking and getting out of bed, going to the bathroom, eating meals, planning and supervising activities for every minute, then bathing and getting Morgan ready for bed – all of this requires assistance that can range from verbal or visual prompting to hand-over-hand help. As we look to the future, there are many unanswered questions on how we will continue to meet her needs. Two years ago, we were told to apply for the Medicaid Waiver, because Morgan would need to be in line to get services. We called and set up an interview. But we were told that Morgan does not qualify for the Medicaid Waiver because her IQ is above 70. Morgan needs just as much support as people with mental retardation, but because her disability is the “wrong” type, we are not eligible for those services.”

Developmental Disabilities

Tennessee State Title 33 is the law that addresses developmental disabilities. Under Tennessee Law, “developmental disability” means: a condition based on having either a severe chronic disability or mental retardation;

“Severe, chronic disability” in a person over five years of age means a condition that:
(A) Is attributable to a mental or physical impairment or combination of mental and
physical impairments;
(B) Is manifested before age twenty-two (22);
(C) Is likely to continue indefinitely;
(D) Results in substantial functional limitations in three or more of the following major
life activities:
(i) Self-care;
(ii) Receptive and expressive language;

(iii) Learning;
(iv) Mobility;
(v) Self-direction;
(vi) Capacity for independent living; and
(vii) Economic self-sufficiency; and
(E) Reflects the person’s need for a combination and sequence of special, interdisciplinary, or generic services, supports, or other assistance that is likely to continue indefinitely and to need to be individually planned and coordinated.

“Severe, chronic disability” in a person up to five years of age means a condition of substantial developmental delay or specific congenital or acquired conditions with a high probability of resulting in developmental disability as defined for persons over five years of age if services and supports are not provided.

Among types of disabilities commonly known as developmental disabilities include: autism, cerebral palsy, mental retardation, spina bifida, and many other types of disabilities acquired in the developmental stages of life. Title 33 made persons with developmental disabilities other than mental retardation eligible for services beginning on March 1, 2002. However, no dollars were allocated for these services, and no services have ever been implemented.

The charge of the Legislatively appointed Task Force on Developmental Disabilities was to address this inequity in order to fulfill the promise of State Title 33.

The Task Force on Developmental Disabilities

In 2006, the General Assembly passed Public Chapter 604, a bill authorizing the Division of Mental Retardation Services to establish a Developmental Disabilities Task Force to study the needs of Tennesseans who have a developmental disability other than mental retardation and to develop a plan for cost-effective home and community-based services for these individuals. The Task Force was formed as a result of this legislation.

Public Chapter 604 required:
 A developmental disabilities task force to be established by the Division of Mental Retardation Services, which would include the participation of relevant state agencies and offices;
 A statewide needs assessment to be conducted, focusing on the needs of persons with a developmental disability other than mental retardation for whom comprehensive home and community-based services do not exist;
 An assessment of the capacity of the service system in Tennessee to serve individuals with developmental disabilities other than mental retardation;
 The development of a plan to provide cost effective home and community-based services for Tennesseans with developmental disabilities other than mental retardation;
 The completion of the assessment and the development of the plan by June 30, 2007.

The Task Force included representatives from all across the state. It included persons with developmental disabilities, family members, professionals in the non-profit sector serving individuals with developmental disabilities other than mental retardation such as United Cerebral Palsy, the Statewide Independent Living Council, the Autism Society, and the Arc, representatives of the Vanderbilt/Kennedy Center University Center for Excellence in Developmental Disabilities, representatives of the Disability Law and Advocacy Center, and representatives of State agencies including TennCare, the Division of Mental Retardation Services, the Council on Devepmental Disabilities, Tennessee Division of Rehabilitation Services, Commission on Aging and Disabilities, Department of Education, and Department of Mental Health and Developmental Disabilities.

Needs of Persons with Developmental Disabilities other than Mental Retardation

People with developmental disabilities are either born with a disablity, or they acquire the disability early in life. This means that every aspect of life development can be affected, including social and educational advancement, the abilty to develop life management skills, and the ability to gain employment skills sufficient to earn a living that will cover the expanded costs associated with the lifelong need for specialized care.

With the right supports, persons with developmental disabilities can advance in these spheres, and many can become completely self-sufficient as adults. Without the right supports, many persons with developmental disabilities are destined to lives of poverty and institutionalization. An appropriate system of services and supports provides intervention thoughout the developmental years and during the stages of life in which independent living skills are maturing. This ensures that the individual is able to develop to their fullest level of capacity. Developing these skills early in life can reduce the need for more extensive government supports later in life. Because of the severity of their disabilities, some individuals will need intensive lifelong supports.

Statewide Needs Assessment

The Developmental Disabilities Task Force conducted a statewide Needs Assessment to ascertain the most critical needs of persons with developmental disabilities other than mental retardation in Tennessee. The primary targeted population for the survey included persons with developmental disaiblities other than mental retardation who are in the Family Support Program, or on the waiting list for Family Support. (Family Support is the only non-disability specific program in Tennessee that provides any level of assistance to the population.) Agencies serving persons with developmental disabilities also participated in the survey.

Of the 1,127 persons who responded to the question about needing additional services, 858 (76.1%) indicated they need additional services. Following are the top ten needs as identified by survey respondents:

1. Information and Referral – someone to provide information about available services and how to apply for them
2. Therapy – physical, occupational, or speech therapy
3. Respite – services provided on a short-term basis to offer relief to unpaid family caregivers
4. Assistive Technology (or Repair/Maintenance) – equipment or supplies needed to improve or maintain functional capabilities of persons with disabilities; may also include maintenance or repair of equipment or supplies
5. Transportation – public or private transportation to access services or necessary community resources
6. Home Modifications – changes to the home to make it more accessible
7. Employment Services – services to help persons with developmental disabilities get or maintain a job
8. Personal Assistance – someone to help with everyday activities in the home or in the community; may include assistance with bathing, dressing, taking care of personal hygiene, and other activities of daily living; may also include housekeeping chores and meal preparation
9. Service Coordination – someone to help manage a person’s services Education – post-secondary education
10. Vehicle Modifications – services to make a vehicle accessible
11. Behavioral Services – adaptive interventions to address challenging behavior

Major recommendations of the task force

After a year of research, discussion, and planning, the Developmental Disabilities Task Force produced its recommendations. The recommendations call for services to be phased in. Following are the recommendations:

 Recommendation 1: The State of Tennessee should provide an array of home and communitybased services to persons with developmental disabilities, consisting of the development of a Medicaid Waiver program and a Personal Support program and the expansion of the Family Support program.
 Recommendation 2: TennCare eligibility criteria for Medicaid Waiver home and community based services should include persons who have developmental disabilities.
 Recommendation 3: Applicants for services who do not have mental retardation should not be required to undergo intelligence testing in order for eligibility to be determined.
 Recommendation 4: Responsibility for administering services for persons with developmental disabilities should be assigned to the Division of Mental Retardation Services in the Department of Finance & Administration.
 Recommendation 5: Information and referral and access to the system should be easy, flexible, competent, consistent and timely.
 Recommendation 6: Persons with developmental disabilities should be provided the opportunity and support to self-direct their services.
 Recommendation 7: An adequate provider network for developmental disabilities services should be developed.
 Recommendation 8: Strategies to expand the supply of skilled direct support professionals should be developed and implemented.
 Recommendation 9: The Division of Mental Retardation Services’ quality management system should be reviewed and expanded as needed to ensure it is responsive to services developed for persons with developmental disabilities.
 Recommendation 10: The Division of Mental Retardation Services should establish an ongoing planning process to guide the development and evaluation of home and community based services for people with developmental disabilities.

Recommended Funding

After much discussion about funding needs, the Task Force ultimately determined that a modest funding request with incremental increases over the phase in period has the best potential for approval by the administrative and by the legislature. Following is the Task Force Recommendation for years 1 and 2:

According to the Governor’s 2007 budget posted on the state website (page B-167), Tennessee currently expends $1,097,130,300 in “Waiver and Crossover” services for home and community based TennCare supports and Mental Retardation Waivers. An additional $1,235,258,400 is expended on long-term institutional care. Of these dollars, none are earmarked for home and community based supports for persons with developmental disabilities other than mental retardation.

Medicaid Waiver Programs

Medicaid Waivers are now the generally accepted means for states to provide home and community based supports and services for persons with significant disabilities who qualify for Medicaid services. When a state establishes an approved Medicaid Waiver program, the federal government pays a percentage of money (called the Federal Medical Assistance Percentage (FMAP)) of the amount of money that the state spends for services to people who are eligible for Medicaid. The FMAP rate varies, depending on income levels in each state. The lowest FMAP for high-income states is 50%; the maximum rate allowed is 83%. The highest rate currently being paid is about 77% (Mississippi). Tennessee’s FMAP rate usually runs around 64%. This means that roughly every dollar Tennessee invests in Medicaid Waiver programs, two dollars comes back to the state from the federal government.

Federal law (Title XIX of the Social Security Act) and regulations spell out the requirements that a state must meet in operating a Medicaid program. At one time, Medicaid only paid for institutional services. Although the concept may seem obsolete, the “standard” for Medicaid services to individuals with severe disabilities is still an institutional standard. This means that Medicaid must “waive” the institutional standard in order to allow states to provide more diverse service options, such as home and community based care.

States are now exploring alternatives to Medicaid Waivers, which are provided for under the relatively new federal Deficit Reduction Act. Most states provide some level of federally matched assistance for persons with all types of developmental disabilities. Tennessee is one of the few states that does not provide these services.

State Administrative Structure

The Tennessee Department of Mental Health and Developmental Disabilities administers mental health programs and services for people with mental illness and substance abuse. Under State Title 33, this department was assigned the responsibility of managing services for all Developmental Disabilities, including Mental Retardation. When the Division of Mental Retardation was moved out of the Department by Executive Order under Governor Don Sundquist in 1996, all of the Developmental Disabilities funding went along with the Division of Mental Retardation into the Department of Finance and Administration.

The Department of Mental Health and Developmental Disabilities no longer has any service component for persons with developmental disabilities. While Tennessee has extensive home and community-based services for people with mental retardation, there are practically no dollars available to provide long-term care services for Tennesseans who have other types of developmental disabilities. Some people who “fall between the cracks” have very extreme disabilities and nowhere to turn for help.

Advocates for persons with developmental disabilities hold that services for persons with developmental disabilities should not be segregated, neither administratively by the state, nor by type of disability. The Task Force found that there is no sense in creating a new administrative structure or provider system, as the necessary administrative stuctures and base provider network is already in place with the Division of Mental Retardation. Developmental disability does not occur in a vacuum, and persons often have concurrent diagnoses. Therefore, some persons with dual or multiple diagnoses that include mental retardation along with other developmental disabilities are already being served by this system.

Understanding Tennessee’s Emphasis on Mental Retardation Services

When Tennessee’s General Assembly approved Title 33 revisions to include people with developmental disabilities other than mental retardation, many Tennesseans with developmental disabilities and their families believed that funding and needed services would soon follow; that the administration and the legislature had made a promise to help provide the care that was previously unavailable. Seven years later, Tennessee has not met this legislative intent of Title 33.

It is difficult for families caught in the gap to understand why the state has focused so much attention on services for persons with mental retardation to the virtual exclusion of every other type of developmental disability.

For many years, Tennessee has been embroiled in lawsuits related to the depopulation of the state’s developmental institutions. The population being addressed was defined by the courts as “persons with mental retardation.” All persons living in the state developmental institutions received the classification of “mental retardation” as a legal designation. When the lawsuits spilled over into the population of persons living in the community, the classification of mental retardation was retained, and the state used IQ testing as the eligibility criterion for programs and services.

Services available to persons with Mental Retardation in Tennessee are defined in “The Family Handbook” which is posted on the DMRS website. Home and Community Based Services provided by DMRS are the same services identified as needed services by individuals with other types of developmental disabilities.

Among services provided under the MR waiver programs include supported living, residential habilitation (services to advance living skills and provide assistance with activities of daily living such as eating, bathing and dressing), Family Model Residential Support (services to help an individual learn, keep or improve skills necessary to live successfully in a family environment, Medical Residential (skilled nursing) services, day services for supporting an individual in community activities, respite care for breaks for primary caregivers, behavioral respite care for management of behavioral issues, personal assistance, transportation services, specialized medical equipment, supplies and assistive technology, interior and exterior home modifications, vehicle accessibility modifications, personal emergency response systems, and professional services such as Physical and Occupational Therapy, Speech, Language and Hearing Services and Behavioral Therapy. Persons in the Arlington Waiver also receive dental, vision services, and nutritional counseling and education.

It is important to understand that not all persons with mental retardation receive all of the services available. In order to receive Medicaid Waiver Services, individuals must meet the income eligibility standard for inclusion in the Medicaid program. Once the eligibility standard has been met, the availability of services depends on the waiver to which the individual is assigned. Some people are placed on a waiting list for services, and they receive no services at all. While over 7,600 persons with mental retardation are currently receiving home and community based services in Tennessee, and other individuals are in Intermediate Care Facilities placements, there are still approximately 6,000 people on the waiting list for Mental Retardation Services in Tennessee.

Because of the long waiting list for MR Services, the Developmental Disabilities Task Force recommended development of a discreet Medicaid Waiver for persons with Developmental Disabilities other than Mental Retardation. Otherwise, qualifying persons with Developmental Disabilities would fall behind the 6,000 people already on the state’s waiting list.

Most advocates are hoping that further lawsuits in Tennessee will not be necessary. When public policy is determined by the courts, arbitrary decisions are made, and no one can predict who will be covered and who will be left out, how long the process will take, and how much of the state’s financial resources will be caught up in defending the lawsuits. The money the state has expended in legal defense on the MR lawsuits could have been put to far better use to cover services to people with all types of developmental disabilities.

Other Tennessee Services

Apart from the Division of Mental Retardation, the only other waiver services offered in Tennessee are provided through the Commission on Aging and Disabilities. This organzation provides some state-funded and some waiver funded services. The Waiver provides a community-based alternative to institutional nursing facility care for individuals over the age of 21 who are eligible for level 1 nursing home care and meet the income based requirements for services. Typical services include minor home modifications, case management personal emergency response (“Help” buttons), home delivered meals, respite care, home based personal care assistance and adult day care.

These programs can work for a limited number of people with developmental disabilities who are at a specific stage in life and who do not have needs for intensive waiver-based supports. It is important to recognize that the programs offered by the Commission on Aging and Disabilities were designed primarly with an adult population in mind. Therefore, no programs are available for children and young people. For the most part, the programs assume that people served are not striving to meet specific independence goals, such as higher education, employment, home ownership, marrying and creating families of their own. There are limited options for transition services (i.e., from high school to higher education), for independent living skills development and for supports to advance in the workforce.

TennCare and Private Insurance

While some individuals are covered under private insurance plans, many people with developmental disabilities of all types eventually end up on TennCare. This is because they are turned down for private insurance because of pre-existing conditions. TennCare and private insurance provide essential medical care. However, the services provided by TennCare and under most private insurance must be determined to meet the “medical necessity” standard. This is a high standard, and it generally means that there must be a strictly defined medical need. For instance, personal assistance for eating, dressing and personal hygiene is rarely provided unless this is an essential part of a medical routine. A child with a severe disability might receive home based nursing care if they are on a feeding tube or a ventilator. An individual who needs intensive lifelong support for activities of daily living is not likely to have services approved under TennCare or under private insurance, other than nursing home services.

The one exception to this is private insurance for long term care services, which is available to persons who are currently in good health and who can afford to pay the premiums. This type of insurance is not available to persons who have developmental disabilities or persons who are known to have a condition that will result in a need for long term care.

Dedicated Service Providers

Provider agencies typically gravitate to programs and services that have government funding streams attached. Tennessee has a large number of service provider agencies under contract with the Division of Mental Retardation. Typically, the agencies that provide housing services and supports do not enroll persons with developmental disaiblities other than mental retardation, even when private pay is offered. This is because most families cannot sustain the annual cost of care over the period of an individual’s lifetime, which could range from $50,000 to well over $100,000 per year.

Because there are no dedicated funding streams for persons with developmental disabilities other than mental retardation, there are relatively few agencies that dedicate direct services to this population. From a more positive perspective, the services provided to persons with mental retardation are the same services needed by persons with other types of developmental disablities. Therefore, if government funding streams could be identified, the existing provider agencies would likely accept persons with non-MR developmental disabilities into their programs as capacity is developed.

Becoming Involved in the “Fulfill the Promise” Initiative

The first, and most important goal is to educate policymakers and legislators. Most families do not become aware of the gaps in Tennessee’s service system until they have a family member with a developmental disaiblity who falls between the cracks. Likewise, most legislators are not aware of the significant problems families are facing.

Each citizen in Tennessee is represented by elected officials who have the responsibility to listen to the needs of their constituents and to address those needs in the most resourceful manner possible. The single most effective way to convey your message is to make a personal appointment with your legislator and tell your story, simply and directly. This is the goal of the “Fulfill the Promise initiative, to connect citizens with the policymakers and legislators who have the power to implement positive change. Persons interested in becoming directly involved in the “Fulfill the Promise” Initiative can send in their contact information by going to:

or they can contact one of the following organizations:

Tennessee Council on Developmental Disabilities: 615-532-6615
The Arc of Tennessee: 615-248-5878
Disability Law & Advocacy Center: 615-298-1080
United Cerebral Palsy of Middle Tennessee: 615-242-4091


October 1, 2008 at 1:12 am 1 comment


UCP Mid TN on Twitter

Delicious Bookmarks