Massachusetts families face less home-based disability services

From The AP:

BOSTON — Lauren Rico's limbs are stiff because of various disabilities—her fingers and toes curled, the elbows and knees of her 70-pound, 18-year-old body bent.

Her mother, Janet Sweeney Rico, has spent years ensuring her daughter can stay at home in Wrentham, and she relies on support from the state for families of the disabled to help pay for professional care after school and massage therapy to ease Lauren's body and lift her spirits.

But with state budget cuts set to take away $78 million of that support funding, massage therapy and extra care for Lauren will not be an option, Rico says, and she worries she'll need to cut back or even quit her own job as a nursing instructor to care for her daughter.

"That would be a huge hit for us financially," said Rico, 51. "If there's a cutback, the quality of care will be greatly impacted for a kid like Lauren, and that could be deadly."

Advocates estimate 11,000 developmentally disabled residents will be affected when state funds for supporting guardians of disabled children and adults end July 1, part of $1.1 billion in Massachusetts budget cuts. They are hoping stimulus funds will be able to restore some of the Department of Mental Retardation programs set to be cut.

"They're cutting the very services that keep people out of state institutions," said Gary Blumenthal, executive director of Association of Developmental Disabilities Providers. "If you cut the infrastructure of the community, that's penny-wise and pound-foolish for the commonwealth."

Blumenthal said he realizes the state has tremendous fiscal problems, and says disabled advocates are only asking for a portion of the $711 million in Medicaid funds for fiscal year 2010. Rico and others say home care or similar programs are more cost-effective than institutions for the state, and better for those needing care.

Leo Sarkissian, executive director of the advocacy organization Arc of Massachusetts, said most families with home services through the state mental retardation department receive an average of $2,000 to $4,000, while the average rate per person in a community residence is $65,000 a year and a state institution averages $208,000 of public money a year.

Sarkissian added costs for someone with more medically intensive disabilities receiving home nursing or personal attendant care may average $65,000; the same services in a community residence would be more than $100,000 per person.

Costs for Lauren's care include the medically intensive classroom at her Mansfield elementary school, equipment, medications and a personal care attendant's trained help. Lauren has a neurodevelopment disorder called microcephaly, a seizure disorder, is legally blind and has delays in all area of development that leave her with the capabilities of a 4-month old.

Jennifer Kritz, a spokeswoman for the Executive Office of Health and Huamn Services, said it is too soon to know how much the department will receive in stimulus money and how those funds might be used.

"We are very committed to serving people with developmental disabilities," she said. "Unfortunately, due to current fiscal realities, DMR had to make difficult budget decisions."

Rico, a nurse practitioner and chairwoman of a DMR task force, said she and her husband used their $600 mostly for improvements to Lauren's quality of life or their respite, paying Lawler to care for their daughter while they go to dinner once a month or take a weekend to themselves.

Though equipment—a wheelchair, braces, splints, tube feed equipment—is mostly covered by insurance, Rico hoped to use future state support money to buy a mattress with air pockets to turn Lauren at night. She and her husband now wake every two hours to turn Lauren because her hip is out of its socket.

Almost 700 people have joined a group on Facebook, an online social network, called "Save MA Family Support." Dozens of stories are posted there of parents—some single, some recently unemployed—and how they rely on the funding to help keep children at home and cut down on hospitalizations.

"I remember when Lauren was born, finding out when she was six months old that we didn't know what she would be like. Those years were very, very hard," Rico said, adding that there is no hereditary or in utero explanation for Lauren's disability. "But now is really equally as hard. I'm getting older and I worry about losing her."

Rico said with the stress of the impending budget cuts, she's heard of families thinking of placing their children into homes. For her, putting Lauren in a group home is not an option.

"We're very committed to keeping her in our home. Even thinking about it makes me upset," Rico said, trailing off in tears. "We hope that she goes with us—that when I go, she goes. I can't imagine just leaving her behind."