Tennessee Disability Coalition News Blog

Report on Fulfill the Promise Meeting

United Cerebral Palsy of Middle Tennessee, Inc.

Thursday, March 6, 2008

Following is a report on the “Fulfill the Promise” meeting on Thursday, March 6 in Nashville, Tennessee. The purpose of this meeting was to give persons with developmental disabilities other than mental retardation, and their parents or other family members the opportunity to speak with their elected representative(s) about their specific situations.

Tennessee State Senator Jack Johnson, and Tennessee State Representative Glen Casada were present to address the concerns of 38 individuals who came to the meeting to discuss the needs of specific children and adults with severe developmental disabilities, ranging from age 2 through adulthood. All persons in attendance expressed their sincere gratitude to Senator Johnson and Representative Casada for taking time to attend the meeting. Gratitude was also expressed to members of the Tennessee General Assembly who have signed on as sponsors of the “Fulfill the Promise” bills, SB2651 and HB2569.

Attendees included parents of children with cerebral palsy and autism, a number of young people and adults with cerebral palsy, and a young person with autism. Other young persons with cerebral palsy currently in Tennessee nursing homes were unable to attend, but wanted to be sure their messages were heard in support of DD Services in Tennessee. Representatives from United Cerebral Palsy, the Autism Society, Tennessee Disability Law and Advocacy, and the Tennessee Disability Coalition were also in attendance.

Prior to General Assembly members’ arrival, attendees were given a brief overview of the situation in Tennessee relating to Developmental Disabilities. Among items discussed were:

• The history of Tennessee State Title 33, Tennessee’s Developmental Disabilities Law
• The important differences between DD Supports and nursing home waiver/HCBS services for seniors and adults with disabilities
• Continuing issues with the TN Division of Mental Retardation, which have for many years overshadowed the needs of persons with other types of severe Developmental Disabilities
• The “Fulfill the Promise” Task Force report that has been delivered to the State Legislature
• The “Fulfill the Promise” Senate and House bills that have emerged from the recommendations of the “Fulfill the Promise” report

Persons with disabilities and their families then described their current situations:

• Parents of a two year old with cerebral palsy and microcephaly are just learning about the problems with service access for persons with developmental disabilities in Tennessee. They would like a single point of entry to a state system where they can learn about and access developmentally appropriate services as their child grows.
• Grandparents of a young child with cerebral palsy have discovered that no services are currently available in Tennessee except school based services. There are waiting lists for the limited help this child might one day receive at home. The lack of Home and Community Based Services is difficult for their daughter, who is a single working mother doing her best to care for a child with immense disabilities and serious health problems. The cost of care for this child is enormous. The grandparents are helping as best they can, but they recognize that a coordinated system of supports will be necessary for the lifetime of their grandchild.
• A young mother with a child with autism attended the meeting along with the child’s grandfather (her father). She reported that she had moved from another state where DD services were provided. It was a shock to find that home based services are not provided in Tennessee. She also believes that the Tennessee educational system is lagging behind other states in supports for children with special needs.
• Two mothers of children with autism reported that they feel abandoned by the state, as there is no system of DD services and supports for their children. They spoke of the high cost of therapies, and the financial stress on their families.
• A young women with severe cerebral palsy stated that she is “tired of being treated like a sick person.” This was in reference to the fact that TennCare and private medical insurance are medically based programs, and that appropriately delivered Home and Community Based Services would help her be active in the community; to gain meaning and quality to her life.
• A young man with mild cerebral palsy stated that he would not qualify or need supports such as the ones supplied under a state program, but he knows that if his cerebral palsy had been more severe he would need these supports. Therefore, he offered his volunteer services to advocate for others with developmental disabilities in order that they might have access to “the same opportunities I have had in my life.”
• A single, divorced mother of a child with autism spoke with great pain about the financial stress and tension on her marriage that came from addressing the needs of a child with severe autism and no available supports. She had to quit her job in order to care for her child. Her child needs behavioral services, occupational therapy, speech therapy and specialized child care during any time that she is away. This mother had to pay $50 out of pocket for child care just to attend this meeting. She asked why Tennessee doesn’t have a Katie Beckett waiver. (In some states, such as GA, these are called Deeming Waivers. These waivers are typically established to help middle income families who don’t make enough money to cover extraordinary costs associated with caring for a child with extreme disabilities.) She also asked, “Where are our legislators? Why aren’t they helping us?”
• A mother of a young man with pervasive cerebral palsy who has just graduated from high school also spoke with great emotion about how she sought in vain for a program to provide personal assistance supports for her son while she was at work. Because she could not find a program, she has been forced place her young adult son in a day care center for young children. While she knows this is very inappropriate, she must continue working in order to have medical insurance and to pay for other costs of living. She said, “My son doesn’t have mental retardation. It is an offense to his dignity for him to be in this situation. I don’t know where to go for help.” Her husband pled with legislators to “Take a leadership role in the state legislature. Please get the State of Tennessee to help our families.”
• The young man, son of the mother mentioned above, said simply, “I just want to work and earn a living like everyone else.”
• Another young man, a recent graduate of high school, who also has extreme cerebral palsy as well as a number of medical needs, attended with his mother and a nurse provided through TennCare. The mother said, “I don’t know what we are going to do when he ages out of TennCare children’s medical services. He needs 24-hour care. I can’t lift him; he needs supports for everything, from bathing, to dressing, to eating. Even though he has difficulty communicating, and he can’t control his body, he graduated from high school with honors, and he is taking college classes online. My son doesn’t have mental retardation; but this doesn’t mean he deserves to be ignored.”
• The TennCare nurse who attended with this family spoke about how she had a family member with a severe developmental disability, and that her family eventually had to send the young person to another state to live because he couldn’t get necessary services and supports in Tennessee.
• An adult man with cerebral palsy spoke about how his parents had cared for him until they passed away. After that, his grandparents provided his caregiving assistance. Then they passed away. His uncles then began to provide his caregiving services. Two of his uncles have now passed away, and his only remaining uncle, who is his last living caregiver, attended the meeting with him. He spoke of how deeply he appreciated the care his family had given him over the years. He also stated that he has been a beneficiary of the PASS program, a small, but cost effective service that emerged from a pilot program in Tennessee to demonstrate that adults with many types of disabilities could hire, supervise and manage their own personal assistance providers without third party management. He said that if he had not had access to this program, he would already be in a nursing home. The “Fulfill the Promise” bill would expand this program to help more people.
• A mother and her daughter with autism attended the meeting to speak of this girl’s needs. While she is not mentally retarded, she has a number of severe conditions on the autism spectrum, and she requires constant supervision and assistance for virtually all activities of daily living. This mother is fearful about what the future holds for her child if we do not establish a DD service continuum in Tennessee.

Legislators in attendance were then offered the opportunity to speak. Representative Casada spoke first. He stated that legislators are torn in many directions, and that all of the citizens who come to them asking for help have issues that they believe are important. Rep. Casada said it was important for families to develop a personal relationship with their own legislators. “One visit isn’t enough. You have to talk to us many times and make sure your legislator remembers you and understands your issue.” Representative Casada said that most legislators aren’t uncaring – they just aren’t aware of the dire situations many Tennesseans are facing.

Senator Johnson then spoke. He said that he had listened carefully to the messages the families had shared, and he recognizes that there are indeed serious issues that our state must address. He then said, “One important role of government is to provide for the general welfare of our citizens. In this case, we aren’t doing a very good job. I promise to take your message back to the Tennessee General Assembly, and I encourage you to keep sharing your message with your own representatives. You are your own best advocates in this effort.”

The meeting was closed with a final expression of thanks to Representative Casada and Senator Johnson, and one final message was shared: We understand that this is not a good year for the state budget, but like any family on a fixed income, when our state has to tighten our belts, we must find a way to take care of our family members with the greatest needs first and foremost. Tennessee has plenty of money to address these most basic needs if we choose to do so. It is our responsibility as good stewards to prioritize our expenditures, and we may have to do without things of less importance in order to allocate assets to protect those who are most vulnerable among us. We urge our state legislature to take consideration of the values we hold closest as we work to address our state budget priorities, and to be mindful of persons with developmental disabilities and the needs of these citizens.

Special Thanks to Deana Claiborne of United Cerebral Palsy of Middle Tennessee for this update.