I am writing this post to the women of Tennessee who have a strong interest in issues impacting women and children, as well as the capacity to bring about positive change in Tennessee public policy. We have talked for many years about how women are disproportionately affected by long term care giving needs of family members affected by disability (“An estimated 44.4 million Americans age 18 and over provide unpaid assistance and support to older people and adults with disabilities, and between 60% and 75% percent of family and informal caregivers are women.”)
I also know that when Tennessee women are united in commitment to right an injustice to our most vulnerable families, we can be a powerful force for good. I am asking for your help in addressing an important issue that is before our state legislature this year:
What’s Wrong with this Picture?
I have a photograph in my desk drawer. I took the picture a couple of years ago when I was making a home visit to one of UCP’s families. It shows a smiling young African-American boy sitting in a wheelchair. Next to him is his mother, also sitting in a wheelchair. The little boy’s hands are twisted and clenched in what are called contractures. This occurs when a child with cerebral palsy doesn’t get the physical therapy necessary to keep muscle groups flexible. This child’s cerebral palsy is severe. He requires home based care giving supports for all times when he is not in school. Despite his physical challenges, this remarkable kid makes A’s and B’s on his report card. He is mainstreamed in a regular public school classroom where he receives the school-based supports necessary for him to succeed in this setting. Due to the level of his disability, affordable neighborhood day care centers and after school recreation programs for typically developing children are not available for him.
The little boy’s mother is an attractive single mother who gave up her once-promising full-time career to provide care for her disabled son. She is also smiling, but her eyes are weary. She is sitting in a wheelchair because of a ruptured disk, acquired after years of lifting her disabled child in and out of the bathtub, and from his wheelchair and bed, with no assistance.
Somewhere in the background, out of the picture, is the boy’s 12-year old sister. She is the one in the family who is now lifting her brother, helping him get bathed and dressed, getting him in bed at night, and doing everything she can to meet his care giving needs while her mother recovers from back surgery.
Convoluted State Infrastructure
This is just one of many families of children and young people with developmental disabilities who do not have access to Home and Community Based Supports and Services in Tennessee. While we have a Division of Mental Retardation that addresses one form of developmental disability, i.e., mental retardation, there is no comparable entity in Tennessee that provides intensive home-centered supports for persons with other types of developmental disabilities. This includes severe conditions such as autism, cerebral palsy, spina bifida and other acute disabilities defined under Tennessee State Title 33 as conditions acquired prior to age 22 and typically identified as severe developmental disabilities by the time the child reaches age 5. By definition, these disabilities have lifelong impact on an individual’s functional abilities and capacity to earn a sustainable living.
Did you realize that the Tennessee Department of Mental Health and Developmental Disabilities has no services and no funding for people with Developmental Disabilities? Despite a legislative mandate in 2000 that changed the name from the “Department of Mental Health and Mental Retardation” to the “Department Mental Health and Developmental Disabilities” and made persons with Developmental Disabilities eligible for services beginning in March 2002, the legislative intent was never carried out.
In order to address a series of federal court orders, during the Sundquist Administration, the Division of Mental Retardation was moved out of this Department to the Department of Finance and Administration. All Developmental Disabilities funding went with the Division, and when that happened, children and adults with some of the most severe forms of developmental disability in our state were simply dropped out of the equation. Over the years, commissioners under various administrations have attempted to address this gap, but with no funding stream and no definitive “home” in state government for these families, their efforts have been fruitless.
Help Needed for Families in Serious Trouble
In my fifteen years as Executive Director of United Cerebral Palsy, I have visited the homes of many families. I have watched severely disabled children grow up without benefit of home and community based supports that they would have received in other states. I have seen families driven into poverty over the cost of care for their children. I have seen other families split apart at the seams because of unremitting stress. Inevitably, this leaves a single mother trying to cope alone with the needs of a disabled child, not to mention the needs of other children, and sometimes even aging seniors in the extended family.
I have testified in child support cases where judges threw up their hands in frustration over the impossibility of meeting a developmentally disabled child’s critical needs on the income basis of the parents in question. I have seen young people with disabilities who graduated from Tennessee high schools and colleges who were shuffled off to nursing homes because we have no place in our communities for them.
On the other hand, I have also witnessed caring, sacrifice, and fortitude from these families in the face of amazing odds. I know one eighty-something year old mother who has for the past sixty years been the primary caregiver for her daughter who has cerebral palsy so severe she can voluntarily move the muscles in only one part of her body, her right foot. This wonderful elderly lady is now also caring for her husband who has dementia related to aging.
Year after year, these families are told to wait until the state gets the problems with the Division of Mental Retardation Services solved; then their issues will be addressed. The only thing is, we never seem to get the problems with DMRS solved. This year, there has been much attention focused on the Division of Mental Retardation budget cuts, the Division’s long waiting list (6,000+), and initiatives on aging. Yet few Tennesseans realize there is a group of severely disabled people, many of them children, who were aren’t even on the radar screen in our state. In effect, these families are told they are second class citizens with second class disabilities.
The “Fulfill the Promise Campaign”
In 2006, the Tennessee Legislature appointed a Task Force under the auspices of the Tennessee Division of Mental Retardation Services to investigate the gap in Tennessee’s service infrastructure for children and adults with developmental disabilities other than mental retardation. Members of the Task Force included persons with developmental disabilities, family members, representatives of non-profits serving the population in need (including UCP, the Arc, and the Autism Society) TN Council on Developmental Disabilities, TennCare, DMRS, TDMH&DD, Commission on Aging and Disabilities, TN Division of Rehabilitation Services, University Centers for Excellence on Disabilities, and the Disability Law and Advocacy Center. Representatives from the TN Disability Coalition observed and monitored the process.
The Task Force worked intensively for a year to develop the recommendations they delivered to the legislature in a report called “Fulfill the Promise*.” It can be found at www.fulfillthepromise.org
The report asks for a very modest investment from the state in the coming year to provide direct services to a limited number of families, and for a concerted effort over the next few years to develop comprehensive and cost-conscious home and community based services that take advantage of federal dollars available to help this population.
United Cerebral Palsy has hosting two meetings for state legislators and families to talk about the report. The first meeting was on February 26 in Murfreesboro. The second meeting was on March 6 in Nashville. We believe that the first and most important step is communication and education. We really need help in getting state legislators (or representatives from their offices) to read the report, and to meet with these families.
Some of the women who will read this post are policymakers. Others of you have good friends in the state legislature. I hope you will use whatever influence you may have to draw the attention of our legislators in Middle Tennessee to this issue. Please ask our policymakers to talk with families who are affected by Developmental Disability, and to listen to what they have to say.
Thank you for taking the time to read this post.
Deana Claiborne, Executive Director
United Cerebral Palsy of Middle Tennessee
1200 9th Avenue North, Suite 110
Nashville, TN 37208
How do I know who my state legislators are?
Get your Tennessee voter registration card. Look at the back of the card to get the number of your state house and state senate districts.
To find your State Senator, go to: http://www.legislature.state.tn.us/senate/members/smembers.htm#Find
At the bottom of the page, you can find your senator by entering your senate district number
To find your State Representative, go to:
At the bottom of the page, you can find your representative by entering your house district number
*The “Promise” refers to provisions of Tennessee State Title 33, which made persons with Developmental Disabilities other then Mental Retardation eligible for Developmental Disabilities services beginning in March 2002. The citizens impacted include individuals who are born with severe disabilities such as cerebral palsy, autism, spina bifida, and other disabilities acquired during the developmental stages of life.
Despite the promise of state Title 33, no services have ever been implemented, and the only division of state government serving persons with Developmental Disabilities, i.e., the Division of Mental Retardation, was placed under the Department of Finance and Administration, leaving the remaining group of persons with Developmental Disabilities without a place in state government.
The Fulfill the Promise bills in the Tennessee State Legislature are sculpted directly from the recommendations of the Task Force. The bills have bi-partisan support among sponsors in both the House and the Senate. Bill sponsors encourage families who are impacted by developmental disabilities other than mental retardation to contact their own representatives and ask for their support of the legislation. This is particularly important as the bills move into the legislative committees.
Since delivery of the report, grassroots advocates from across the state have held local meetings with legislators, giving families the opportunity to share stories about their own situations. Families have written and called their legislators. They also attended the Tennessee Disability “Days on the Hill” and met with legislators in their offices at the Legislative Plaza.
Many families report that the cost of caring for their children and family members with severe disabilities without benefit of Home and Community Based supports has driven them into poverty and has resulted in instances of divorce and multiple physical and mental health problems among caregivers. Individuals with disabilities are impacted because they do not have access to direct support services, after school and daycare services, therapies, and other essential services typically provided by other states in their Developmental Disabilities waiver programs.