Residents protest cuts to disability programs

Residents outline concerns for legislators at packed meeting

By Janene Holzberg

Howard County Times, October 29, 2009

Nearly 300 people crammed into Ellicott City Assembly of God Church last week to protest state budget cuts to developmental disabilities programs and a burgeoning waiting list for services before a cluster of invited elected officials.

The Howard County Town Hall Meeting, held Oct. 22, was the second of eight forums planned across the state and was sponsored locally by The Arc of Howard County, eMerge, Howard County Autism Society and Humanim.

Seventeen speakers, some of them individuals with developmental disabilities, offered emotion-filled testimony about losing or not having desperately needed programs.

There are 19,000 people on a statewide waiting list that is managed by the Developmental Disabilities Administration, said Laura Howell, executive director of the Columbia-based Maryland Association of Community Services. About 800 adults and children from Howard County are among that number, she said later.

The 22,000 people who receive services have had their programs slashed since the start of fiscal year 2010 (July 1, 2009), said Howell, adding that a third round of budget cuts is expected in early November.

A year-long effort by DDA workers to weed out names that may no longer belong on the list -- due to changes in status, moving out of state, or death of applicant -- will culminate in January and should lower that figure, Howell said after the meeting.

"Cleaning up the list is a pretty big undertaking so it doesn't happen routinely," she noted.

Over a 10-year period, just keeping pace with inflation, DDA has been underfunded by $100 million," Howell told the audience, which included Maryland Department of Disabilities Secretary Cathy Raggio and Renata Henry, deputy secretary of behavioral health and disabilities for the Department of Health and Mental Hygiene.

"Support staff workers earn an average of $10 an hour here in the wealthiest county in the wealthiest state, forcing them to work two or three jobs" to make ends meet, or to seek employment elsewhere, she said. "But community service providers are only reimbursed at a rate of $9 an hour, so already we have a shortfall."

Howell said money for service coordinators, who provide an important oversight service, was cut by 15 percent; $1 million was cut from the rolling-access fund that grants waiting-list families up to $3,000 year; and $1 million was cut from the respite care program, which provides breaks for caregivers.

"We are all gravely concerned," she said.

Dorothy Plantz, co-chairperson of The Arc's governmental affairs committee, told the crowd that despite its wealth, Maryland is ranked 43rd for spending on developmental disabilities issues and devotes 21 percent less funding to that category than the average state.

Plantz, whose 27-year-old son, Matthew, has been on the waiting list for eight years, said, "It's time for our 'One Maryland' slogan to include all citizens."

Pat and Dan Sullivan held up a photograph of their 21-year-old son Ryan, telling the audience that he has Down's syndrome, attention deficit hyperactivity disorder and autism.

Dan Sullivan said he's blind in his left eye and losing his vision in his right, yet he might have to retire from his job and attempt to be Ryan's caregiver since his son has lost vital support services.

As citizen testimony drew to a close, moderator Ed Wilson of The Arc opened the floor to legislators.

"I would be angry and frustrated if I were in your position," Sen. Edward Kasemeyer, an Ellicott City Democrat, told the crowd. "We will make an effort to correct cuts that were inappropriately directed at you."

Sen. James Robey, an Elkridge Democrat, said he "was not prepared to make any more cuts" to developmental disabilities services. "And I promise to vote for the (5-cent-per-drink) alcohol tax if the proceeds benefit DDA, and if it ever gets out of committee."

Sen. Allan H. Kittleman, a West Friendship Republican, said he wanted to apologize "because our government doesn't place a priority on you."

"I'm not sure the alcohol tax is the answer, because they could give that money to you and then take it away again somewhere else," he said.

More information on the DDA waiting list is available at www.endthewaitnow.com.

One mother's plea: Protect 'our most vulnerable citizens'

With his upturned nose, thick fringe of dark eyelashes, and closely knit eyebrows, Matthew, 39, has all the telling facial characteristics of Cornelia de Lange syndrome. Both of his arms end at the elbow, a limb abnormality that often accompanies the syndrome. He weighs a mere 53 pounds.

His mother, Pam Matheson, testified at last week’s town hall meeting about the impact of state budget cuts from her wheelchair, her son at her side in his wheelchair.

“Matt has wanted all his life to be a regular guy,” Matheson told state legislators. “His services make the difference between being shut away and being part of the fabric of the community.”

When the Ellicott City woman first laid eyes on him, he was 6 years old and lying passively in a crib at Rosewood Center, a now-closed state institution for the developmentally disabled in Owings Mills. She was a 26-year-old special education teacher in Howard County, learning about stimulating children with special needs.

“Here was this little guy who didn’t respond (to stimulation). ... There could be cymbals crashing and it wouldn’t matter.”  She was told he was deaf and blind, though later testing proved he his hearing and his vision were impaired.

“He vomited 30 times a day, was self-abusive and just an awful mess — but he had a spark in his eye,” she recalled.

Leaning into his crib, “I said ‘ma-ma’ and he repeated it after me six times in a row and I thought, ‘Well, he’s got some smarts,’ ” Matheson said. She became Matt’s foster parent soon after that.

“I always wanted kids and I fell in love with him… you just do what you need to do,” she said.

After taking him home, Matheson was told Matt wouldn’t have lived much longer if she hadn’t, because he repeatedly aspirated food into his lungs — a chronic problem she says occurred because he was fed pureed foods while lying on his back.

She soon decided she didn’t want to be Matt’s foster parent any longer; instead, she adopted him in 1980.

Since then, Matheson has married, had a car accident in 1988 that put her in a wheelchair, and, in 2000, retired as an itinerant teacher of visually impaired students after 27 years with the Howard County public schools system.

The loving effort she puts into caring for Matt, some might say, is Herculean since both mother and son use wheelchairs. But Matheson doesn’t see it that way at all.

“I believe you do what you can for your fellow man,” she said. “It’s every person’s duty.”

The only recognition she wants is from elected officials that people such as Matt thrive on the opportunities provided by state funding and families depend on assistance. When support workers’ visits are cut from his weekly routine, he is deprived of community outings and all she can manage is changing his diaper and hooking up his stomach tube for meals.

“These are our weakest, most vulnerable citizens,” Matheson said. “We are begging the state not to reduce funding for these vital community services.”