States cutting more and more disability services

From The Wall Street Journal Nov. 20:

Faced with widening budget shortfalls, several states are rolling back support services for the elderly and disabled. The move is making it tougher for them to continue living on their own, advocates say.

At least 15 states, including Alabama, Virginia and Massachusetts, are targeting such funding, mostly for programs that allow low-income shut-ins to receive personal care -- like cooking, cleaning and basic health services -- in their own homes, according to the Center on Budget and Policy Priorities, a liberal-leaning Washington, D.C. think tank that studies state budgets.

The cutbacks are exacerbating the already long waiting lists for home-care support services in many states. That leaves the low-income elderly and disabled to dip into their meager incomes to hire their own help, reach out to family or charity, or seek more restrictive and expensive care in a nursing home, advocates say.

"We are beginning to see serious cuts and we are expecting those cuts to get worse," says JoAnn Lamphere, director of state government relations at AARP, an advocacy group for the elderly.

As the economy falters, declining revenues and tax receipts have led state agencies to cut spending, with 41 states facing current or looming deficits, according to the Center on Budget and Policy Priorities.

Services for the elderly and disabled are just one of the areas facing cuts. But the cuts hit hard because the population is especially vulnerable.

"The call volume is increasing exponentially and the people are desperate," says Sarah Lightell, chief operating officer at the Senior Resource Alliance, which uses state funds to provide home-care services to the elderly in central Florida.

In the current and prior fiscal year, Alliance lost a combined $1 million, or 8%, of its funding, and was forced to reduce services including adult day care and meal delivery. Alliance's waiting list for various services has doubled over the past 18 months to about 3,000 seniors.

"Without any intervention, a nursing home may be the only option," Ms. Lightell says.

In surveys, the elderly and disabled say they prefer to avoid nursing homes and receive less-restrictive care in their own communities. Through the Medicaid program for the needy, the government has encouraged home-based care in recent years, since nursing homes cost far more per person. In 2006, the federal/state program spent about $47 billion on nursing-home care and $15 billion on home- and community-based services.

Some officials say that the savings community-based care is supposed to generate are often illusory. When eligibility is expanded, critics argue, people who would never enter nursing homes come out of the woodwork to get government funding. This "woodwork effect" only adds to the overall cost.

In Onondaga County, which includes Syracuse, N.Y., the numbers of the elderly
waiting to receive homemaker services tripled this year to 60, as the state struggles with budget problems.

The Council on Aging of Southwestern Ohio says it took a 4.5% cut in funding for home-care services, but has so far avoided service interruptions by keeping provider rates flat. The state of Virginia just stopped annual subsidies of $500 to people caring for the needy free of charge.

In Illinois, the local chapter of the AARP organized a lobbying effort to reverse proposed cuts in home-care services for the elderly because of the state's $25 million shortfall in the program. The effort succeeded, but "we really don't know whether we forestalled the problem" until the next legislative session, says Nancy Nelson, the group's manager of advocacy in Illinois.

For some elderly and disabled, lack of funding means going to a nursing home. In 2004, Clayton Griffin was paralyzed on his left side by a stroke. Confined to a wheelchair, he can lift himself out of bed, but needs help dressing and using the bathroom. Mr. Griffin, 54, qualified for Florida's Medicaid program that would pay for him to receive personal care in his own apartment, which is what he preferred.

But because of a long waiting list for services, Mr. Griffin was placed in a nursing home, according to a lawsuit against the state of Florida filed in January. The class-action lawsuit alleges that the state "unnecessarily" puts disabled people in nursing homes because it doesn't allocate enough resources for community-based care.

Unhappy in the institutional setting, Mr. Griffin moved out in June to a subsidized apartment. He attends church and goes shopping, according to court documents.

Since Medicaid wouldn't pay for his care outside of a nursing home, Mr. Griffin used his monthly $996 Social Security disability check, Medicare benefits and help from friends and family to hire a nursing assistant for $52 a day, according to court documents. That is less than a third of what Medicaid-funded nursing-home care would cost, these documents say.

Running out of money, Mr. Griffin asked the U.S. District Court for the Northern District of Florida to require the state to pay for his care. In a preliminary injunction on Oct. 14, Judge Robert Hinkle agreed.

"Because of the very substantial difference in Mr. Griffin's perceived quality of life in the apartment as compared to the nursing home, each day he is required to live in the nursing home will be an irreparable harm," the judge said. Besides, he added, the state would save $3,700 a month by letting Mr. Griffin stay in his own apartment.

Florida's Agency for Health Care Administration has appealed the injunction, while "vigorously defending" itself against the broader class-action lawsuit, says Justin Senior, the acting general counsel. Mr. Senior declined to comment further other than to say that Florida has "consistently expanded" its Medicaid services for the elderly and disabled in their own homes.

In the year ended July 2008, Florida's waiting list for one home and community care service for aged and disabled adults nearly doubled to 8,505 people. The state's budget outlook is grim enough that further backlogs are possible. "We are going to be facing a tight year," says Dyke Snipes, Florida Medicaid director. "It wouldn't surprise me if the list is increasing."

Neighboring Alabama is wrestling with similar issues. In a tough fiscal climate, the state decided to save $2 million a year by ending homemaker services for about 1,200 "vulnerable, disabled and elderly adults who are in need of protection from abuse, neglect or exploitation," according to the state's Department of Human Resources, which was funding the program.

"It was disappointing," says Vincent Holingsworth, 35, who was born blind and used to have a homemaker come in twice a week to clean his subsidized apartment in Gadsden, Ala. Mr. Holingsworth, who lives on a monthly $657 Social Security check, now pays a housekeeper $50 to clean for him once a month. "It's expensive, but I need my house cleaned," he says.

Local officials and social workers are scrambling to find help for others like Mr. Holingsworth who have faced a sudden end to subsidized homemaker services. New Beacon Hospice took in several people dropped from the DHR program, but its requirement is that the patient must have six or fewer months to live, says hospice social worker Rebecca Parris. One frail woman with several illnesses and on a lot of medication "didn't meet the criteria, so we couldn't provide care," Ms. Parris recalls.

In Alabama's Etowah County, where 48 out of 1,200 former DHR clients live, at least two ended up in nursing homes after the homemaker services stopped, says Jon Costa, the county's DHR director. An interagency team is now looking at how to help others, including outreach to families, charity or other state-funded programs.

"There are still a handful of folks isolated with no immediate neighbors," he says. "Their needs might be truly unmet."