Gap in State Infrastructure Impacts Developmentally Disabled

Developmental Disability is generally defined under state and federal law as “severe, chronic disability; manifested before age 22; attributable to a mental or physical impairment; resulting in substantial functional limitations; likely to continue indefinitely; and requiring specialized supports and services.” Developmental conditions that we typically recognize include conditions such as autism, cerebral palsy, intellectual disability, muscular dystrophy, cystic fibrosis, and spina bifida. DD may also include early onset disabilities such as spinal cord or brain injury acquired in the developmental stages of life. As diagnostics become more complex, we are seeing a number of less recognized, but equally severe conditions. While the state of Tennessee provides dedicated developmental services to persons with mental retardation (intellectual disabilities), there are no dedicated services for persons with other equally severe forms of developmental disability.

The Tennessee Department of Mental Health and Developmental Disabilities has no services and no funding for people with any form of 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 the state’s failure to meet the mandates of a series of federal court orders related to the depopulation of the state developmental centers, the Division of Mental Retardation was moved out of the Title33-mandated department to the Department of Finance and Administration under Executive Order of then-Governor Sundquist.

The courts essentially defined a “protected” DD population in the state of Tennessee. Even though there were people with all kinds of developmental disabilities (as defined above) living in the state’s large developmental institutions, the courts defined the entire group as being “mentally retarded.” In doing so, the courts hearkened back to a time in our country when people believed (and our laws thus reflected) that all people with developmental disabilities had “mental defects.” Obviously, we now know that there are many forms of developmental disability; some forms indeed impact intellectual capabilities. Other forms impact physical and even behavioral functions. The truth is that most developmental disabilities include multiple areas of affect.

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.

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 the new Initiative 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, not even worthy of a home in state government.

Budget shortfall may force deep cuts in Tenn.

Disability, children’s services brace for funding drop

By Chas Sisk
THE TENNESSEAN
May 26, 2009

Raising a child with autism is difficult.

Diane Lara is raising two.

Heavy lifting, trips to the doctor and sleeplessness — insomnia is frequent in children like hers — are a few of the challenges Lara deals with daily.

She relies on the help of caretaking assistants the state provides. But with government leaders in Nashville looking at further cuts, Lara might be dealing with more of those challenges alone.

“I’m scared,” the Shelbyville mother said last week. “I hate to say it because I’m luckier than some people, but I can’t imagine how much more tired I would be having to deal with the two of them all by myself.”

As the recession continues to drag on, Tennessee’s mental disability services and many other departments are bracing for another hit.

Two months after declaring that the federal stimulus plan had saved the state from taking drastic measures to balance the budget, state officials now say hiring freezes, layoffs and deep cuts may be needed after all to deal with a sharp decline in tax receipts.

The shortfall will force the state to draw deep from the financial reserves that it built up earlier in this decade, officials say. But it also will mean speeding up cuts — possibly even to programs such as mental health, mental disability and children’s services — that officials had hoped to phase in gradually over the next few years.

“We had to propose reductions, a lot of reductions, in order to make this budget work,” said David Goetz, the state’s finance commissioner. “Under any circumstance, it’s a very, very difficult budget.”

Services may be slashed

The cuts could mean sharp reductions to services like the state-paid personal assistants who help Lara take care of her 17-year-old daughter, Megan, and her 10-year-old son, Nickolas.

Both Megan and Nickolas have autism that results in severe learning disabilities. Megan also has a seizure disorder, and Nickolas has cerebral palsy. Lara works part-time as a bus aide, and her husband, from whom she is separated, provides financial support.

But it is nowhere near enough to pay for the personal assistants, who are paid about $200 a day each. With each child requiring nearly round-the-clock supervision, Lara says she could not take care of them both without the assistants.

“My idea of fun is getting to go out to the grocery store,” she said.

Taxes come up short

Programs like the personal assistant service face the budget knife because tax receipts have fallen far short of projections.

In March, the Bredesen administration estimated the state would receive $11.3 billion over the next budget year, which begins July 1. Now, the administration says Tennessee will receive $173 million to $350.7 million less than that.

That is in addition to a $116 million to $172 million shortfall in the current budget year, which ends June 30.

Many state departments will be asked to bite down harder to bridge that budget gap.

Few departments, however, have already been cut as deeply as the Division of Mental Retardation Services. A preliminary budget released by the state in March called for cutting the state’s allocation to the division by 12 percent to $63.7 million in the budget year that begins July 1.

Even deeper cuts could follow. A document released along with the preliminary budget shows that the state would have slashed the division’s budget in half, were it not for the infusion of cash from the federal stimulus plan.

Now with the deficit deepening, many expect state budgeters to go back to that plan and call for another round of reductions.

Gov. Phil Bredesen did not rule out such an action late last week.

“I’ve tried to be really open,” he said Thursday. “I’m very concerned about the cuts, particularly in children’s services and mental health. I think, mental retardation, we probably have some room there because our rates are so high here in Tennessee.”

That assessment is disputed by advocates. They say cuts are already likely to harm the state’s mentally disabled population.

“We’re seeing reductions to programs that help people to function very well,” said Donna DeStefano, assistant director of the Tennessee Disability Coalition, an advocacy organization. “You start taking them away, and people end up getting hurt.

“Then you have a higher need. In the short-term, it can be very cost effective, but in the long-term it’s not.”

Already feeling the pain

Several lawmakers said they hope to find some ways to keep mental disabilities and other social services from taking a harder hit.

“There comes a point in time where you cut a service so much, you have to ask yourself why you’re providing that service,” said Sen. Jim Kyle, the Senate Democratic leader.

But the alternatives are few. Tax increases have been ruled out, several legislators and other government officials said. Staffing reductions also are possible, though Bredesen pledged in March to avoid layoffs until at least next year.

“We run a pretty lean government anyway in Tennessee,” said Rep. Mike Turner, a Democrat representing Old Hickory. “There’s not a whole lot of room to cut. You’re getting into hurting people pretty quick when you start to cut.”

Diane Lara says she is already feeling the pain. Until recently, Megan’s and Nickolas’ personal assistants both came seven days a week. Now, Megan’s come six days, and Nickolas’ come five.

Meanwhile, Lara’s challenges mount. Next month, Nickolas will undergo surgery in an attempt to strengthen his legs enough to allow him to walk. The operation is meant to make him more independent, but more immediately, it will mean three months in casts.

It’s a trial that will require Lara to rely even more on the personal assistant program, she said.

“I can’t be two places at once,” Lara said. “What happens if I’m doing something with him, and she has a seizure and stops breathing?

“He will be totally dependent on me.… I’m hoping they give me the help that I need.”

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Schools, Metro to help kids with disabilities transition to real world

Published on Nashville City Paper: Nashville’s Online Source for Daily News (http://nashvillecitypaper.com)
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Amy Griffith Graydon
School districts are required by federal law to help kids with disabilities transition from high school to the outside world. But getting that done effectively takes support from across the community, according to Karen Curry, a Stratford Comprehensive High School consulting special education teacher.

Curry said Monday that she sees that kind of support starting to grow in Nashville.

“It takes everybody. I think that, finally, we have everybody on board,” Curry said.

Metro Nashville Public Schools already has programs in place to help kids with disabilities move to work or school after high school graduation. But last year, members of Mayor Karl Dean’s Advisory Council on Special Education identified this as an area in need of improvement.

In response to the recommendations, a pilot program was developed to start at Stratford next year that will help high school kids make plans for the future. Stratford currently has almost 180 students with disabilities, about 100 of whom are expected to go on to additional schooling after they graduate. The pilot program at Stratford will be geared to help special education students with no plans for after high school.

The Stratford program was one of the areas of focus at Monday’s education summit, an annual initiative of the Mayor’s Office. Last year’s summit tackled truancy, and recommendations from participants led directly to the recent establishment of the new Metro Student Attendance Center. The summit this year focused entirely on transition services for students with disabilities.

Dean told summit participants that the Mayor’s Office can help the Stratford pilot program by facilitating connections between the students and the community, most immediately through the Mayor’s Office and Metro government.

“A pilot program like this, if it’s successful, can be used at all our high schools,” Dean said. “That should be something we’re able to do.”

After the summit, Dean said improvement of transition services can be part of the positive changes that are already taking place for Metro special education. He also pointed to the economic benefits of preparing students with disabilities to work and contribute to the community.

District-wide, 12 percent of Metro students receive special education services, according to Report Card information from the Tennessee Department of Education. Visit Nashville.gov/mocy/specialed for more information about recommendations from Dean’s Advisory Council on Special Education.

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

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.”

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.

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.

more about "Jean and Carol Smith ", posted with vodpod

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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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:

http://www.youtube.com/watch?v=1eUor6qhTrY

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