Archive for March, 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.

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

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.



March 31, 2009 at 6:42 pm 1 comment


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