Impending Medicaid cuts would severely impact care for profoundly disabled

Parents of the profoundly disabled are profoundly troubled.

Beginning April 1, Medicaid will cover a total of 75 occupational, physical and speech therapy sessions annually. The health insurance program for the poor and disabled now covers a combined 225 of those therapies a year.

The reductions will be retroactive to July 2010, meaning some families already will have reached their yearly maximum before the cuts officially take effect.

Among them are Daniel Island parents Jennifer and Mitchell Feinman, whose 10-year-old son Kingsley receives speech and occupational therapy four times a week. Reductions in therapy mean the family will have to shell out thousands of dollars to cover Kingsley's therapies out-of-pocket. Otherwise, he risks reversing progress made over years of therapy.

"He will gradually lose daily living skills he fought hard for," said Diane Monroe, his grandmother.

The boy's mother considered the logistics: "This will cover 18 weeks out of the year for us," Jennifer Feinman said.

The Riddle family, of Summerville, could sympathize: both sons, 12-year-old Ian and 9-year-old Alex, are autistic and each require two therapy sessions weekly. Medicaid-covered therapy has helped them learn to fasten buttons and strengthen their facial muscles to make their speech easier to understand.

"The caps are standing in the way of success for my children and many others," said Lisa Riddle, the boys' mother.

The Feinmans and the Riddles joined other guardians of the disabled in a statewide letter-writing campaign highlighting the expected fallout of state Medicaid cuts. Lowcountry Voices for Special Needs, an advocacy group for the disabled, plans to release letters written by about two dozen families describing how the reductions will impact them. The first was distributed to media and some state officials Jan. 12.

Spokesman Jeff Stensland of the S.C. Department of Health and Human Services, the state Medicaid agency, said families can ask their doctors to request waivers for therapies considered "medically necessary." The state agency's own doctors would review those requests and grant exceptions to the cap on a case-by-case basis, he said.

"We know that there's a core group of kids who need those services," Stensland said. "And we know there are some instances where they're being over-utilized. We're putting a check in place."

Therapy sessions covered by school districts and those done in the hospital will not be affected, he said.

Next week, the state department of Health and Human Services will review all Medicaid cuts, some of which are scheduled to take effect beginning Feb. 1, to make sure they don't cause "undue harm to beneficiaries," the agency announced Friday. Some might be reversed or changed, Stensland said.

That is little comfort for Lowcountry parents, who worry the reduction in therapies and other cuts are a slippery slope that could affect their disabled children's civil rights.

Julia Barrett-Martinelli, a Lowcountry Voices for Special Needs organizer whose 23-year-old son is blind and can neither walk nor speak, said some families eventually will not be able to afford to keep their children at home because service cuts will make it too expensive to do so. This could force families to put their children in institutions, where Medicaid is mandated to cover treatment.

But what Barrett-Martinelli calls "forced" movement to institutions violates a federal Supreme Court decision that says people with disabilities should be treated in the home or in community-based settings -- instead of being institutionalized -- when those options are available.

The Summerville mother and other advocates pointed to a settlement made in Georgia last fall. Federal investigators there found that the state "failed to serve individuals with mental illness and developmental disabilities in the most integrated setting appropriate to their needs," the U.S. Department of Justice said in October.

A spokeswoman for the federal agency did not return a request seeking information on whether any similar federal complaints or findings have been made in South Carolina. Stensland from the state Department of Health and Human Services said he was unaware of civil rights violations stemming from cuts.

Other letter writers in Barrett-Martinelli's camp described the hardships they and their disabled charges might soon face.

Registered nurse Rosemary Boling and her staff watch 57 clients at Low Country Active Day Center, an adult day care in Goose Creek. Boling said her facility will have to eat about $24,000 annually for skilled-nursing procedures now covered by Medicaid. Beginning April 1, Medicaid no longer will reimburse for tube feeding, wound care and other procedures now handled by nurses at adult day care facilities like Boling's, where Medicaid covers 95 percent of registered patients.

"None of my clients are asking for an increase in service," she said. "Leave us where we're at now. Do you think they like the idea that they're confined to wheelchairs and have to be somewhere where someone has to watch them all day long? Leave them alone."

Carolyn Mann cares for her mentally- and physically- handicapped daughter, Brittany, at their James Island home. Brittany has difficulty swallowing and keeps food in her mouth, making tooth decay a "constant threat," even though Mann, a dental hygienist, brushes her daughter's teeth at least twice daily, she said.

Medicaid is dropping dental coverage for adults beginning Feb. 1

Covering the treatments out of pocket will be costly because Brittany must go to a specialized practice in Columbia, where she is put under general anaesthesia for dental procedures because of her disability.

Beyond the therapy cuts, the Feinman family worries about what will happen when Kingsley outgrows his $35,000 wheelchair. Medicaid now replaces power wheelchairs every five years. After Feb. 1, that will increase to seven.

"There's a huge difference between the size of a 10-year-old and a 17-year-old," Jennifer Feinman said.

Like thousands of other families of the disabled, Feinman is frustrated with the reductions the state Department of Health and Human Services is making as it struggles with gaping budget shortfalls of about $228 million this year and more than $600 million next year.

"I know they're trying to save money," she acknowledged. "But I am happy to care for my son, and I love him, and I love to get him what he needs. The state is making it hard for us to do that."