Letter from Asst. Commissioner Norris to DD Taskforce
In the report entitled “Fulfill the Promise” the Developmental DisabilitiesTask Force appointed by the state legislature called for an increase in state funding for the Family Support Program, one of Tennessee’s only service programs that is available to persons with developmental disabilities other than mental retardation. The entire Family Support Program is now at risk due to the current state budget situation. Go to the following link to download the letter that Assistant Commissioner Steve Norris sent to the members of the taskforce detailing state plans for the future of the Family Support program:
http://www.ucpnashville.org/FamilySupport/NorrisLetter.pdf
Add comment April 13, 2009
State Disabilities Fund May Dry Up
April 11, 2009
Program’s budget for 2010 could drop from $7 million to $200,000
By Colby Sledge
THE TENNESSEAN
Money is already tight for Murfreesboro residents Merideth and John Allen.
Their daughter Hannah, 17, is mentally retarded, and their son Josiah, 15, has spina bifida and requires a ventilator. John was laid off from his job at Bridgestone in December, and Merideth has been searching fruitlessly for work from home as she cares for Josiah.
To help offset some of the financial strain, the family has been using funds from a state program designed to help residents cope with disabilities ranging from wheat allergies to muscular dystrophy.
But now that program, known as Family Support, could face steep cuts after federal stimulus funds run out.
The program will receive slightly more than $7 million over the next year, mostly because of federal stimulus funding. But then the budget could plunge to $200,000 by mid-2010 if state revenues don’t improve.
“There’s no way we can make up that difference,” said Mary Hildebrand of The Arc of Davidson County, which administers the program in Nashville. “This is something that’s going to have a huge impact on people with disabilities.”
In Davidson County, 400 families receive about $1,500 each annually from the program. An additional 1,500 are on the program’s waiting list, and that’s just “the tip of the iceberg of the people eligible,” Hildebrand said.
About 4,000 families across the state receive money to help purchase medical equipment and pay for therapies to treat developmental disabilities. Families typically get $1,000 to $1,500 annually.
Other programs at risk
Corporations and nonprofit organizations could help make up some of the expected funding loss, but they won’t come close to restoring the proposed cuts, said Deana Claiborne, executive director for United Cerebral Palsy of Middle Tennessee, which oversees the funds for Rutherford County.
“You might be able to get a one-time grant of 10 (thousand) or 15 thousand dollars, but when you’re talking about needs that don’t change year to year, there needs to be an ongoing stable source of funds,” Claiborne said.
Stephen Norris, deputy commissioner for the Division of Mental Retardation Services, which oversees the program, said programs that don’t receive federal matching funds like Family Support were at greater risk of being cut.
“The problem is it’s 100 percent state-funded,” Norris said. “The picture is grim, to say the least.”
Norris said his office has cut administrative positions and direct care staff because of impending state cuts. Should state revenues increase next year, Norris said, the Family Support program would be one of the first places he would put the money.
Already cutting back
The Allen family has been using the money from Family Support to help pay for increased electric bills due to Josiah’s equipment. Merideth was hoping to use some of next year’s money on state and court fees to maintain conservatorship — a type of power of attorney — for Hannah.
“Our plans would be to just cut back on what we can, but we’re kind of already doing that,” Merideth said.
Gwen Dyer of Murfreesboro would take a double hit if the program was cut. Dyer, who has spinal muscular atrophy, a form of muscular dystrophy, uses the money for a behavioral therapist for her son Drew, 8, who has autism, and for instruments to help her grip items.
Dyer says she’ll have to find money elsewhere in her family’s budget next year if the program is cut.
“My husband and I are very budget-minded, so if there’s something my child needs, we would do anything we could to provide that,” Dyer said. “It’s going to hit a lot of people.”
Add comment April 13, 2009
Linda Tilson
Linda Tilson discusses support needs for her daughter Mary, who has cerebral Palsy. She also addresses the Fulfill the Promise initiative, and the lack of services for persons with developmental disabilities in Tennessee.
Add comment April 8, 2009
Jean and Carol Smith
Jean Smith discusses support needs for her daughter Carol, who has multiple disabilities. Jean coordinates the Fulfill the Promise initiative in East Tennessee.
Add comment April 8, 2009
People with Developmental Disabilities Losing Home Based Nursing Care
UCP is receiving an overwhelming number of requests for help with home and community based care for our consumers. Please find below two stories about UCP consumers who are losing access to their TennCare provided home based nursing care. These two persons both have cerebral palsy. They each meet the TennCare eligibility standards for medical/nursing level of care.
Many of our consumers need similar home and community based caregiving supports, but they do not meet the state-defined medical standards for receiving home based nursing care. While most of our consumers need substantial supports for everything from transitioning, to bathing, dressing and eating, in some cases their needs are not considered medical in nature, therefore they do not qualify for nursing level of services. Most of these persons are being cared for by family, friends, and neighbors or their families are paying out of pocket for their care.
The first story is a link to a WSMV report on Lori Maby, who has cerebral palsy. Many of you met Lori at our Resolution Run this year. Lori loves to be active in the community. Lori has been informed that she is losing her home health supports. If this happens, she will be forced into a nursing home.
http://www.wsmv.com/video/19044295/index.html
The second story below is about Jim Shannon. Jim also has very severe cerebral palsy. I have known Jim since he was a teenager. It is hard to believe he is in his 30’s now. Jim’s parents have cared for him for most of his life, but now they need additional supports as they are now in their 60’s. We are working with so many families in this situation right now.
As you are aware, a number of our consumers have already been forced into nursing homes because of the cost of their care. Even more have been required to accept less hours of home-based medical care, which puts them in danger, as described in the article below.
We are offering our support to the Tennessee Health Care Campaign and to the Tennessee Justice Center in addressing these concerns. Please note that if the legislature lifts the limit on home based nursing care, it still does not solve the caregiving problem for many individuals who have severe disabilities, but don’t meet the current “medical” level of care standard.
One other note: the article below indicates that the cost of 24-hour home based nursing care is $300,000 as compared to $56,000 for a person to reside in a nursing home. The $300,000 number reflects 24-hour one-on-one care by a nurse. I have visited many nursing homes over the years, and I can tell you for an absolute certainty that I have never seen a nursing home resident receive one-on-one level of care. In fact, I would be hard pressed to tell you a time when I even saw a nurse in a room when I arrived.
I have gone into a nursing home and found one of our consumers lying naked in the bed – the nurses said that dressing him with his spasticity was just too much trouble. I insisted that someone come in and dress him every day, and after that he did have clothes on when we went to visit. We are dealing now with a situation where one of our consumers was sexually molested by a staff person in a nursing home. When we filed a complaint, she was moved to a nursing home in Jackson, and we no longer can check in on her regularly. As far as we know, the staff person is still working in the nursing home.
The bottom line is this: Appropriately caring for a person with a severe developmental disability costs more than $56,000 annually. But it shouldn’t cost $300,000. There are many ways to coordinate a combination of medical level of care and well trained paraprofessionals to provide quality home and community care. Our state is being foolish in how we approach this problem and these needs.
Deana Claiborne, Executive Director
United Cerebral Palsy of Middle Tennessee
1200 9th Avenue North, Suite 110
Nashville, TN 37208
March 31, 2009
Disabled fear TennCare cuts will force them into nursing homes
By Jennifer Brooks
THE TENNESSEAN
There are a lot of things Jim Shannon can do for himself: earn a living, earn a master’s degree, even lobby the state legislature.
Then there are the things he can’t do without help, like eat, or speak, or roll over in bed at night.
For these things and more, he relies on the home health nurses TennCare provides. Last year, the state cut $31 million from its budget for at-home nursing care, drastically cutting back the home-based care available to nearly a thousand Tennesseans like Shannon, who has cerebral palsy.
Those cutbacks, Shannon says, almost killed him. Left alone for just 20 minutes by an inexperienced caretaker, he started to choke and nearly died.
On Monday, he and other health-care advocates petitioned the legislature to restore the lost nursing care funds. For many, he argued, those cuts could mean the difference between living happily at home, or being forced into a nursing home, or worse.
“Those additional cuts sentence many physically challenged individuals like me to a miserable life and possible death,” Shannon testified from his wheelchair with the help of a computer voice synthesizer before the joint legislative committee that is studying the TennCare rule change.
Last summer, TennCare changed its longstanding rule of allowing unlimited home-based nursing care and instituted a new 35- to 40-hour weekly cap.
The state has long had some of the most generous home nursing benefits in the country, and TennCare officials said the cost of nursing care had been going up at a rate of 50 percent per year.
Wendy Long, TennCare’s chief medical officer, told lawmakers that the home nursing budget was growing out of control, ballooning from $18 million a year in 2001 to $313 million by 2008.
“We are still (among) the top states in the country in our benefits,” said Long, adding that the “vast majority” of TennCare recipients have been able to remain in their homes, despite the cutbacks.
Few need 24-hour care
Tony Garr, executive director of the Tennessee Health Care Campaign, said he knows of at least two people who have died because their nursing care was cut back.
He and other advocates are pushing for the nursing cuts to be delayed until the state implements some of the other programs it has promised to help sick, disabled and elderly residents stay in their homes and out of nursing homes.
“People have died because of these cuts already,” he told lawmakers, who are trying to decide whether to preserve the TennCare rule changes or discard them. “If you want to cause more people to die, go ahead with these cuts.”
Long said she isn’t aware of any deaths caused by the rule change.
More than 10,000 Tennesseans receive private-duty nursing care through TennCare, the state’s $7-billion-a-year Medicaid system, but fewer than 1,000 require anything close to round-the-clock care. Unfortunately, the neediest patients are also the most expensive. The annual cost of 24-hour home nursing care for one patient would top $300,000 a year.
Putting the same person in a nursing home would cost about $56,000 a year.
State Rep. Mike Kernell, D-Memphis, questioned why TennCare is rushing to cut $31 million in nursing care when the TennCare system has more than $500 million in reserve funds and is about to receive $1.1 billion in federal stimulus money.
Since the nursing cuts, the burden of care for many people has fallen squarely on the shoulders of their families.
Families ask for help
Toni Thornton wept as she told members of the joint government operations subcommittee about her 38-year-old daughter Darcelle Lefler, who is terrified of being placed in a nursing home again.
She spent a few months in one once, her mother said, and nearly died of a blood clot and emerged traumatized by the experience.
“She’s a smart, loving child who lays in bed 90 percent of the time because it hurts so much she can’t sit up in a wheelchair,” Thornton said.
Jim Shannon lives with his parents and his father, Bill Shannon, told the committee how they’ve been caring for him. Because of his poor circulation, Jim has to be turned every hour. Three nights a week, his 64-year-old father spends the night in his room, turning him. Three other nights of the week, it’s his mother’s shift.
One night a week, Bill Shannon told the committee, he gets to share a bed with his wife while a nurse takes over for the night.
His parents are getting older now. Both have had injuries in the past year that made it hard for them to move and lift their 38-year-old son.
He isn’t complaining, Bill Shannon told the committee, but he could use a hand from the state.
“Whatever help y’all can give us, we’d be grateful,” he said.
In the end, members of the joint subcommittee voted to make no recommendation on the TennCare nursing rule, and to leave it to the full committee to make a decision, sometime next month.
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1 comment March 31, 2009
Mother of Child with Muscular Dystrophy Comments on Fulfill the Promise
Michelle Priddy is a member of the 2009 Partners in Policymaking Class. The following link is for a video presentation she made on behalf of her son, who has muscular dystrophy, in support of the Fulfill the Promise legislation for Tennessee:
Add comment February 25, 2009
2008-09 Metro Funds Still Available for All Together Kids Inclusion Program
United Cerebral Palsy of Middle Tennessee is still accepting applications for the All Together Kids inclusion program for Metro/Davidson County. All Together Kids is a program designed to promote the inclusion of children with disabilities in community based after school programs, recreation, arts, and extra curricular activities alongside their typically developing peers. The program will supply grants for up to $1,000 to families for direct assistance for their child to participate in these activities. The program is funded by a grant from the Metropolitan Government of Nashville.
The program is designed to be flexible to meet children’s specific needs, and available to families in neighborhoods where they live and work. For example, funds may be used for tuition or enrollment in a variety of community programs such as day care, arts, after school care, camps, recreation and faith-based programs. Funds may be used for specialized accessible transportation, supplies, uniforms and other items specific to the child’s needs in the program. Funds also may be used for specific therapies and services that are targeted toward development of communication, socialization, or other skills that may be necessary for children with disabilities to integrate effectively with their peers.
According to UCP Executive Director Deana Claiborne, families are finding a number of creative ways to make use of the program. “Some families of children with autism are enrolling their children in community based programs and using the All Together Kids grant to help pay for behavioral therapies that give their children the skills to interact with typically developing children.”
Some families are applying to use the funds so their children can attend overnight camp programs, affording their children with disabilities the opportunity to spend the night away form home for the first time in their lives. Others are using the funds for integrated day care and summer day camps. One family is using the funds to pay for a recreational therapist to work one-on-one with their child in taking community-based swimming lessons alongside typically developing children. Another family is using the funds to acquire accessible playground equipment at their child’s afterschool program so their child “will no long be left laying on a blanket while other children are at play.”
The program is for school-age children with disabilities who live in Davidson County and who are currently enrolled, or will be enrolled during the period of the grant, in an inclusive community based after-school, recreational, extracurricular or other community based program in the Nashville community.
While families may apply at any time, Claiborne urges families to get their applications in a quickly as possible. “We know that a number of families want to use the grant for summer programs that may cross Metro fiscal years. We need to get these application in as quickly as possible to we can set up service plans and work out the financing arrangements for this fiscal year. There are limited funds available, and we want to make sure everyone who needs the program has an opportunity to apply.”
The application for the All Together Kids program can be downloaded from the UCP website at
http://www.ucpnashville.org/AllTogetherKids/ATKIndex.htm
If families have questions about the program, of if assistance is needed in completing the application, call the All Together Kids Program Coordinator, Laura Crain, at 615-477-4992.
Add comment February 10, 2009
UCP Executive Director Post to Change.Gov
The inauguration of a new president takes place tomorrow. Like many Americans, I am proud that our country is an example to the world of what peaceful and orderly change in government means in a democratic society. The Obama Administration has developed a website called Change.Gov, where they are asking for input from indivdual citizens on how to change government. Following is the post I entered today:
I work for United Cerebral Palsy of Middle Tennessee. In our state, people with cerebral palsy and developmental disabilities other than mental retardation do not receive dedicated DD services. In fact, our State Department of Mental Health and Developmental Disabilities doesn’t even serve people with Developmental Disabilities. In my job, I interact daily with young families who need intensive home and community based supports that are not available to them. To make matters worse, because our state has no intention of serving this population, their critical needs are not even registered on a waiting list.
In my personal life, my husband and I assist in caregiving for my mother, who has Alzheimer’s Disease. We are providing home based care for her because we believe home is the best place for her to have quality of life. Because there is no source of funding for home based care, my father is spending over $100,000 annually out of pocket to bring in personal supports for her.
My husband’s mother recently passed away, and we are now taking over guardianship of his adult sister, who has an intellectual disability. Along with many other families, our family has been overwhelmed with the caregiving needs of persons with severe disabilities. We have learned that there is no consistency from state to state, or by functional need, in the services that people can receive. We have also learned that there is little access to caregiving supports for individuals who do not meet complicated and illogical eligibility requirements.
As this Administration seeks to stabilize the economy, we see this as a critical need and a way that non-skilled workers can be employed in jobs that have genuine meaning. As the baby boomers are aging, the needs for home and community based care for the disabled are increasing every day. We would very much like to be involved in an effort to develop a national policy and standards for every state in providing Home and Community Based Services for people with disabilities that takes into account age-appropriate supports as well as the unique needs of families. As Americans, we have a responsibility to care for our loved ones in the most humane and loving way possible. Please accept our offer to volunteer in this effort.
There are major changes needed to the Medicaid and Medicare programs. If we make these changes, and if we work together through state and local initiatives, we can put Americans to work in meaningful jobs. We can serve citizens with the most critical needs in the way they and their families deserve to be served.
Deana Claiborne
UCP Executive Director
1 comment January 19, 2009
State Budget Woes Force Cuts to UCP Family Support Program
Program serves people with severe disabilities
The state has notified non-profit disability service providers that the Tennessee Family Support Program, which is the state’s only program serving persons with certain types of severe disabilities, has been cut in the amount of one million dollars for the current fiscal year. Reductions are projected at two million dollars in the next fiscal year.
United Cerebral Palsy of Middle Tennessee holds the state contract for services in Rutherford County. According to Rutherford County Family Support Program Coordinator, Laura Crain, the agency is faced with decreasing services to families in the amount of $34,461 between now and June 30, 2009. “It is extremely difficult to make these cuts,” says Crain, “Rutherford County is the fastest growing community in the state. The Family Support allocations are based on census data, but we haven’t had a new census recently, so our original allocation is low in comparison to the rest of the state. We have a long waiting list for services in Rutherford County. Our volunteer based council had already reduced allocations to individuals in order to accommodate some people with extreme needs on the waiting list. Now we have to make even further reductions.”
UCP Executive Director Deana Claiborne acknowledges that the state’s budget shortfall required immediate action, but she says the state could have found more strategic ways to cut funds. “Family Support provides essential assistance to the state’s most underserved disability populations. In most other states, there is a far more comprehensive array of home and community based Medicaid Wavier services for these groups, particularly for children and young adults with developmental disabilities like cerebral palsy, autism, spina bifida, and other severe lifelong conditions.”
The Rutherford County Family Support program is now serving 192 persons. The program gives priority to children with developmental disabilities who are not served in the Tennessee Division of Mental Retardation Medicaid Waiver programs. Claiborne notes that while Family Support has always served a large number of people with cerebral palsy and other developmental disabilities, the largest growing population in need in Rutherford County includes children with autism.
“We can only hope that donors in Rutherford County will step up and make private contributions to help these families,” says Crain. Contributions to United Cerebral Palsy are tax deductible.
Contact: Deana Claiborne, Executive Director
Deana_Claiborne@ucpnashville.org
United Cerebral Palsy of Middle Tennessee
1200 9th Avenue North, Suite 110
Nashville TN 37208
615-242-4091
1 comment January 14, 2009
Drew and Heather are Getting Married!
Long time UCP volunteers Drew Bennett and Heather Hudson are getting married, and all of us at UCP offer our heartfelt congratulations!
Drew Bennett, formerly of the Tennessee Titans and now with the St. Louis Rams, founded the “Drew Crew” when he lived in Tennessee. The Drew Crew consists of friends, fans, family members and young people from UCP who cheer for Drew both on and off the field.
Many of us became acquainted with Drew and Heather when they first started dating — then they became a fixture at all of UCP’s events and activities, especially our sports night and wheelchair basketball games. Drew and Heather formed a special connection with our families, and as that bond grew, so have the many friendships they have helped to create.
We created a webpage so friends and family members could honor this special occasion with a gift that benefits the many young people with disabilities who have grown close to Drew and Heather through their work with UCP. Go to: http://www.ucpnashville.org/DrewandHeather.htm
We also hope friends will post your own messages to Drew and Heather on this blog!
Add comment January 7, 2009
