A true need

Our view: Maryland's underfunding of services for the developmentally disabled has brought the system to a breaking point

their cause must finally become a top priority

December 27, 2009

Pam Matheson was a young special education teacher when she first went to the Rosewood Center in Owings Mills for training, and before long, she'd fallen in love with Matthew, a 7-year-old boy with Cornelia de Lange Syndrome, a set of conditions including small size, gastrointestinal problems, heart defects and other symptoms - often, as in his case, some degree of mental retardation. She arranged to get him admitted to the School for the Blind in Parkville, and when she learned the school would not take someone who lived in an institution, she agreed to become his foster parent.

Matthew was never fond of school, but he loved living with Ms. Matheson and her husband, John. Matthew took his first bath in a bathtub and ate meals at a table with other people for the first time. He learned to love the freedom of normal life. He can make only a few approximations of words, but "home" was soon one of them.

Thirty-two years later, Matthew still lives with his parents and still loves having a life where he's not sequestered all day with others with disabilities. He likes watching football with the guys, going bowling or seeing a movie. His mother and father have cherished every moment with him, but they worry about the future. They are now 59 and 61, and they know that one day they may no longer be able to care for him as they do now. They worry he will one day lose his parents and his home at the same time, and they have seen too many other families who can't get help until their situations become desperate, and often not even then. They wish that before Matthew faces a crisis someday, he could get a placement in a small home where he would be happy and free."He should have a right to a life," Pamela Matheson says.

Their family is one of thousands on a waiting list for services for the developmentally disabled in the state of Maryland, and their case is nowhere near as dire as many others. Because of chronic under-funding, even many of those deemed to be in a state of crisis by the state can be forced to wait years for services, and those who are in need of small breaks, like respite care to allow them to take a few hours off to attend to their own needs, can wind up waiting forever. Family members who care for relatives with developmental disabilities find themselves unable to work because they can't leave their charges alone. Others suffer physical consequences themselves from having to cope with homes that are not handicapped accessible. Some of the develomentally disabled regress - losing skills like walking and speech - because their families cannot afford therapy.

Despite major unmet needs, the state has been forced to cut funding for community support services for the developmentally disabled in the last year. According to figures from the state Department of Health and Mental Hygiene, Maryland has cut more than $15 million in direct funding for community support services this year, plus more as part of the Medicaid program. Advocates put the total figure at $30 million. The department has sought to avoid cutting as deeply in this area - it makes up 14 percent of the department's budget but 6 percent of the cuts - but amid a profound budget crisis, it hasn't come close to holding the developmentally disabled harmless.

The End the Wait Now coalition of caregivers and advocates has been attempting to draw attention to the issue and may be on the verge of finally bringing it near the top of the priority list in Annapolis. The group has held a series of community forums around the state to spread the word about their unmet needs, and they drew more than 2,500 people - including lawmakers who pledged to raise their concerns when the General Assembly reconvenes in January.

The group's hope is for an increase in the alcohol tax, to be dedicated to eliminating the waiting list. The group commissioned a poll of 833 registered Maryland voters by Gonzales Research & Marketing Strategies and found that 75 percent would favor a five-cent-a-drink increase in the alcohol tax if it was dedicated to funding services for the developmentally disabled. A five-cent tax increase would raise more than $100 million a year. In a recent meeting with The Sun's editorial board, Gov. Martin O'Malley said he believed the idea was gaining traction.

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