There’s a place where unbuckled seat belts, birth defects and South Carolina’s desire to be a retirement mecca have intersected.

It’s in the long lines of state residents waiting for health care services.

State agencies have lengthy lists of disabled and elderly people seeking care the agencies say they cannot afford to give. They blame budget cuts over the past three years.

Two state departments alone — Health and Human Services, and Disability and Special Needs — have almost 7,000 South Carolinians on waiting lists for care.

One of those agencies has not placed a single new person in residential care for three years.

“I’m afraid we’re going to be sued,” said Stan Butkus, Disability and Special Needs department director, speaking recently to Gov. Mark Sanford.

That fear is real: A 1999 U.S. Supreme Court ruling requires states to whittle down waiting lists for services for the disabled. Some residents want to hold South Carolina to that mandate.

One South Carolinian waiting for care is 29-year-old Tamika Johnson, the mentally retarded daughter of a North Charleston Johnson family. She has been on a list for state-funded residential care for seven years.

The Johnsons — Capers, who is 63 and on disability, and his wife, Sandra, 59 — have cared for Tamika “since conception.”

Now older, they say they need help.

“We were told we’re not a priority,” Sandra Johnson said. “They told us that our daughter is at home and, essentially, there’s no help for her unless we die.”

State agencies say they review cases on waiting lists — such as Tamika Johnson’s — and new requests for help constantly, prioritizing requests based on need.

But new requests for help come in faster than beds in state facilities open up. There’s a good chance, state officials say, that a new placement in a residential facility won’t be made until a death leads to an empty bed.

Waiting lists are longer in other states, too.

And, as the national economy has struggled and state budgets have been cut, residents in two dozen states have sued, alleging their governments failed to provide care.

‘TICKING TIME BOMB’

Overwhelmingly, the S.C. waiting lists are made up of Medicaid recipients.

Some want in-home services, such as meals and help with a bath or getting dressed, to avoid going into a nursing home. Others need residential care offering round-the-clock assistance.

The state Department of Health and Human Services said it has a waiting list of 3,000 elderly patients who want long-term care in their communities. That would allow them to stay at home and avoid spending their twilight years in a nursing home.

(The 3,000 on that waiting list is down from 4,000 in 1997. However, it’s up sharply from only 1,134 in 1999.)

The department also has a waiting list of 300 for entry into nursing homes, up about 50 from last year.

The state Disability and Special Needs Department, which treats individuals who have autism, mental retardation and head or spinal cord injuries, says it has a waiting list of 1,789 residents who need out-of-home placement into group residential facilities. That’s up from 1,685 last year.

In many cases, a department official said, the requests are to place older disabled adults whose parents have provided care all their lives. Those parents are elderly and unable to continue giving that care.

The department said it has another waiting list of 1,700 severely disabled individuals who need in-home support — personal care, home modifications and respite services — to avoid being institutionalized. That’s up from 970 last year.

In-home assistance long has been preferred by many families, especially those who can afford it. There also has been a steady, national trend away from institutional care.

Residents who need state and federal assistance want those same types of in-home services, which are less restrictive, less expensive and, in most cases, deemed safer than nursing homes or institutional facilities.

Tighter budgets and escalating health-care costs also have caused state governments to want out of the business of providing expensive, institutional care.

But the shift from nursing homes and institutional facilities has resulted in longer waiting lists for in-home care.

“The waiting list is a ticking time bomb,” said Butkus, whose agency’s state budget has been cut by $26 million over the past three years.

‘THEY’RE SAYING, “I NEED HELP”’

That time bomb is ticking, in part, because of a 1999 U.S. Supreme Court ruling. That ruling said states must provide services in communities to those with disabilities, rather than relying solely on institutional care.

The Supreme Court case, Olmstead v. L.C., was brought by two mentally disabled Georgia residents who were confined to institutions. They contended they had the right to care in their communities under the Americans With Disabilities Act.

The Olmstead ruling also requires states to make reasonable progress in paring down waiting lists for services for the disabled.

Butkus said South Carolina has avoided a lawsuit largely by grace.

“We haven’t been as litigious a state as some others,” he said. “(But) we’d have a hard time saying we’re making reasonable progress, since no one has come off the waiting list in the last three years.”

A number of factors cause the waiting lists.

“For one thing, public health has gotten less and less funds since the Reagan administration,” said George Appenzeller, president of System Wide Solutions Inc., a private consulting company for nonprofit and public agencies in Columbia.

The demand for disability services also has increased.

One reason is injuries sustained in traffic accidents, officials said. People moving into the state also have increased the strain on the system, officials said.

“I’ll bet there’s not a month that goes by that I don’t get a call from someone wanting to move to the Pickens and Oconee areas,” said Lois Park Mole, government and community relations director at Disability and Special Needs.

When planning their move, families with disabled loved ones call to ask what services are available, she said.

S.C. residents with a family member requiring services also have been strong advocates for more care, state officials say.

“These are people who have stayed in their homes all these years taking care of a family member,” Mole said. “They have worked hard, paid their taxes, gone to church, and now they’re saying, ‘I need help, and can’t get it.’”

State waiting lists also grow when disabled students graduate from high school. While enrolled, the disabled students get care through the schools. Upon graduation, however, their needs fall to state agencies, Mole said.

‘WE’RE MAKING EVERY EFFORT’

South Carolina also has had trouble coming up with enough money to pay for the increased demand.

The state is required to spend $1 to get $3 in matching money from the federal government for Medicaid, which covers the largest part of disability services.

But the state has not had enough money to build new community facilities and hire enough staffers to meet the increased demand, Mole said.

That leaves people, including the Johnsons of North Charleston, waiting.

The Johnsons say they love their daughter. However, the strain on the family shows.

Tamika requires 24-hour-a-day care; no day-care program meets her needs.

“She does not sleep at night,” Sandra Johnson said. “So we are up and down, up and down.”

While Sandra Johnson holds down a job, a companion comes in to watch Tamika.

On weekends, however, the Johnsons have no help.

“If they just had a place you could leave your child to take a vacation, get a break, that would help so much,” she said.

The Johnsons meet with an advocacy group in Columbia, the Association for Retarded Citizens.

“We go to these meetings and hear about ‘no budget, no budget,’” Sandra Johnson said.

At the meetings, there also is talk of suing the state.

“Absolutely! I brought it up myself,” she said. “I know that some time in South Carolina people have to get a wake-up call to realize these are real activities.”

Sanford and lawmakers appear to be aware of the state’s precarious situation.

“The whole state budget has been down for the past three years,” said Sen. Verne Smith, R-Greenville, chairman of the Senate Finance subcommittee on health. “Instead of growing, it’s been stagnant.”

He blamed tighter budgets from lower sales-tax collections, money that otherwise could have helped offset the waiting lists for health care.

And he said it will be a long time before the state’s budget surpluses are restored. In the interim, he, too, is depending on the good graces of the people of the state to avoid being sued.

“They know we’re making every effort to try to provide for them.”

Reach Burris at (803) 771-8398 or rburris@thestate.com.