A TRUE NEED

THE BALTIMORE SUN

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.

Traditionally, leaders in the General Assembly have resisted the idea of creating dedicated revenue streams for particular purposes, and there's good reason for that. Doing so too often can rob state leaders of the flexibility they need to manage during times of economic turmoil and can exacerbate budget crises. But there is precedent for increasing a tax with a concurrent increase in spending for a specific purpose - as in 2007, when the cigarette tax was increased at the same time as spending on Medicaid. And the alcohol tax could easily be increased without placing an undue burden on anyone. The taxes on wine and beer haven't increased in more than 30 years, and the tax on spirits hasn't been incresaed in more than 50. There is little chance that a nickel - or even a dime - per drink tax increase would send consumers across the border to buy alcohol in other states, as Maryland's tax rates are now among the lowest in the nation.

Even so, the odds of a tax increase passing during an election year are slim. Barring that, the coalition has made a strong case that their budget should be held harmless from further cuts.

In the meantime, the health department has made developmental disabilities a priority and is pursuing crucial efforts to mitigate the situation. For starters, there's the matter of the waiting list, which has 19,000 names on it but which hasn't been updated to reflect people who have moved out of state or no longer need services. And the list doesn't reflect the level of need, so it's unclear how many of the 19,000 need around-the-clock care and how many need occasional, small assistance. Health Secretary John Colmers said the department will work with advocates to address that issue within the next year.

At the same time, the state and the developmental disabilities community should take the opportunity to rethink the way Maryland provides services. Traditionally, the state's priority has been to hold down reimbursement rates for providers so that services for the developmentally disabled can be made available more broadly. But that may reduce the availability of services. Some states have also experimented with systems that allocate money directly to caregivers to spend on services as they see fit. That, too, is a worthy idea for the state to explore.

Maryland, despite its wealth, has lagged for years in services for its most vulnerable residents and those who give over their lives to care for them. The system is fast approaching a breaking point, but the state, caregivers and advocates should use that crisis as an opportunity to make sure Maryland lives up to the promise that all its citizens can live a life of freedom and dignity.

Readers respond

Where is this notion of entitlement written? All its citizens can live a life of freedom and dignity? Sure, but not at taxpayer expense. Perhaps The Sun has selective memory when it comes to the condition of the Maryland budget. Democrats' noble intentions got us into this mess.

MDR

Yes funding for developmental disability services should be a priority. Funding would make it possible for people to work and pay taxes. Parents would be able to work if supports were available to their children after school, and people with disabilities would receive the support they need to work and pay taxes. Support for 19,000 people with developmental disabilities would provide a lot of jobs to Marylanders from entry level positions to middle managment to executive positions.

EAG

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