Massachusetts budget cuts threaten futures of three disabled sisters

From The Boston Globe:

BELMONT, Mass. - Jillian Burke was a beautiful baby with blond hair and blue eyes, and she grew into a happy, chatty toddler. Three years later, Nancy and Paul Burke welcomed Lindsey into the world, and after another three years, Kelsey.

"Everything was absolutely, positively fine," Nancy said. "They were the cutest, they were the sweetest, the most fun. They were truly happy kids. It was the happiest time of our life."

But the girls began to regress rapidly, and all three were eventually diagnosed with Sanfilippo syndrome, a rare and fatal degenerative brain disease. Now the state is poised to cut off the recreational, respite, and family support services that have kept the Burke family afloat. Under the Senate Ways and Means Committee's proposed budget for fiscal 2010, the Burkes, like other families with disabled members, will lose crucial services for their girls as of July 1. The full Senate is scheduled to vote on the budget this week.

The budget includes $100 million worth of cuts to disability services, which will affect at least 21,000 adults and children, according to the Association for Retarded Citizens, a nonprofit advocacy group that has planned a protest rally at the State House this morning. Nancy and Paul Burke say they will be there.

The budget cuts would force the closure of "day habilitation" programs, which offer activities to 6,500 disabled adults in Massachusetts, according to the advocacy group. That is what alarms the Burkes the most. They say they don't know what will happen if the program that Jillian attends five days a week is closed. "We are just barely getting through the day as it is," says Paul, who recently retired from teaching English at Cambridge Rindge and Latin School.

If the cuts go through, the Burke family would also lose assistance from a caseworker who helps with all three girls and about $3,000 a year in "flex funds" that help the family pay for therapy, medical equipment, recreation such as after-school art classes and bowling, and fees for highly trained baby-sitters.

The cutbacks come amid Massachusetts's worst budget crisis in decades, one in which revenues have plunged, the state's rainy day fund has shrunk, aid to cities and towns has dried up, programs have been cut, and a range of tax increases have been proposed to help close the gap. Economic advisers have told the state to expect at least four years of budget problems.

Jennifer Kritz, a spokeswoman for the state Department of Developmental Services, said shrinking revenues forced the department to take "the difficult step" of eliminating funding for family support services. "We are committed to working closely with consumers and their families to help identify potential sources of support that may be available," she said. "Of course no agency wants to be in a position to need to make these types of cuts, but fiscal realities required that we make some very difficult decisions."

Things started to fall apart for the Burkes when Jillian was in first grade. She began to have difficulties in school, was anxious, and couldn't concentrate. The diagnosis was attention deficit disorder, but the medications didn't work. In second grade her parents took her to specialists at Massachusetts General Hospital. Still, no one could figure out why she was regressing.

In third grade, a geneticist finally put a name to it: Sanfilippo syndrome, a metabolic disorder in which the body is missing an enzyme needed to break down sugar molecules that are used in the building of connective tissues. The result is a brain disease that affects memory, speech, mobility, and behavior. Children with Sanfilippo syndrome generally die in their teens or early 20s.

Genetic testing revealed that Nancy and Paul each carried a recessive gene. There was a 1-in-4 chance that their child would get the disease, but all three did.

Jillian is now 22, Lindsey is 18, and Kelsey 16. The symptoms vary from girl to girl and run the gamut: confusion, inability to speak clearly or swallow well, memory loss, anxiety, sleeplessness, and scoliosis. They all walk on their tiptoes, pitched slightly forward, because of muscle problems. Eventually they will lose the ability to walk and talk.

Cambridge Family & Children's Service has provided family support to the Burkes, but because of the anticipated loss of state funding, three caseworkers have lost their jobs, while the two remaining workers have 500 cases each. One of those workers is Karen LeBlanc, who has worked with the Burke family for nearly five years, providing emotional support, accompanying them to medical appointments, and advocating for services.

"Without family support, many of the families I serve will break down, they will have to seek residential placement, or quit their jobs to stay home with their affected loved one," she said.

When Jillian had a recent choking episode, Nancy Burke called LeBlanc to help get her and the other two girls to the emergency room. LeBlanc has helped get additional state funding for Kelsey, who has anger and behavioral problems. She occasionally watches the girls on the rare instance when the couple goes out.

Nancy Burke, a preschool teacher, must shower Jillian and Lindsey, wash and dry their hair, cut their toenails, and shave their legs. Jillian can no longer dress herself. Kelsey's speech is so rapid it's hard for even her parents to catch. Lindsey and Jillian speak nearly inaudibly.

"Sanfilippo syndrome pretty much mirrors Alzheimer's, with skill loss and dementia," Nancy said. "You can't really have a conversation with them." Because the girls wander off, someone must keep a close eye on them at all times. In March alone, they had 10 doctors' appointments, and Jillian was hospitalized when she had all of her wisdom teeth removed.

During the week, Jillian attends a day program run by the Association for Retarded Citizens, which is at risk of elimination because of the proposed budget cuts. Lindsey and Kelsey are enrolled in ungraded classes for developmentally disabled children - Lindsey at Lexington High School and Kelsey at Bedford High. (Their classes, funded by a private agency, are not threatened by the budget cuts.)

The Burkes's fragile family life is reflected in a calendar jammed full of specialists' appointments, therapies, and tests. "There are three segments of the population who are the most needy: children, the disabled, and elderly," Nancy said. "They can't advocate for themselves, and they are completely dependent on us."

The parents can see that Jillian is failing: Her breathing and swallowing is labored, she is disoriented, agitated, and cries constantly. "Some nights I just get up five times to make sure she's breathing," her mother said.

Paul Burke is quieter than his wife, but the pain of what is happening to his family is etched on his face, reflected in his eyes. He is frustrated that every year or so he and other families of disabled people have to write letters, testify at the State House, and attend rallies to fight for funding.

"We have very difficult lives," he said. "We do not have the time or energy to do this year after year."

In a statement, the Association for Retarded Citizens said the budget cuts would be far costlier to the state in the long run: "Without respite, employment, day habilitation, transportation and autism services and the like, people with disabilities will be forced into much more expensive options, such as residential schools, group residences or other forms of public assistance." The statement noted that most of the Department of Developmental Services' budget is 50 percent reimbursable through federal Medicaid dollars.

For Nancy and Paul Burke, it is painful to watch neighbors' children graduate from college, get married, and have children.

"We know these are experiences our girls are never going to have," Nancy said. "But then you look at them and you think, they're the best things that have happened to us. We are blessed to have them."