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In Anne Arundel, more than 1,100 with disabilities wait for help that's not coming

The need for services for these residents has especially soared in the past few years, and local non-profits say they're overwhelmed.

 

In Anne Arundel, more than 1,100 with disabilities wait for help that's not coming...

From the outside, the house on Earleigh Heights Road looks like all the other family homes along the tree-lined street.

On the inside, it's a typical bachelor pad, with TVs in every bedroom and plenty of Baltimore sports memorabilia decorating the walls. Three men have lived in the one-story house between Pasadena and Severna Park for about a decade.

One is Eric Ondrovik, 35. His cerebral palsy brought him to Bello Machre - the Glen Burnie nonprofit group that runs the home - some 20 years ago. Another is Bill Matchuk, a developmentally disabled man in his 30s who relies on a wheelchair and struggles to speak at times, but whose eyes light up when asked about the dozens of Baltimore Ravens posters that hang in his room.

At 63, Stanley Thomas is the oldest of the three. The Arnold native, who also is developmentally disabled, speaks proudly of his many brothers and sisters, pointing them out in pictures that adorn his walls. He loves to show off the bicycle he rides around the quiet neighborhood.

The men share the house with a family living director who helps care for them. Mr. Ondrovik's parents live right down the street, and they say homes like this one provide developmentally disabled people with a sense of security and, perhaps most important, a sense of independence.

"It's not home, but it's as close to home as you can get," said Joe Ondrovik, Eric's 62-year-old father.

But it takes money from the state to run these homes. And for every Eric, Bill or Stanley that Bello Machre helps, there are almost as many they can't.

"It is at a crisis stage," said Robert T. Ireland, executive director of the group, which serves about 450 developmentally disabled county residents. "I turn people away every day. It's the saddest part of my day."

In Maryland, more than 22,000 people with developmental disabilities receive state-funded services so they can live independently like the men on Earleigh Heights Road, according to the state Developmental Disabilities Administration.

But there are more than 17,000 people waiting for help.

In Anne Arundel County, the number of people on the administration's waiting list has increased 67 percent since 2004, and there are now more than 1,100 people waiting for services. That number grows every month because there's not enough money to go around, providers say.

Going without

"They're called developmental disabilities because one can only recognize them as a child develops across time," said Dr. Paul Lipkin, a developmental pediatrician and director of the Kennedy Krieger Institute's Center for Development and Learning in Baltimore. "It usually comes from some abnormality in the neurological system."

People who are developmentally disabled need a range of services, depending on their disability and how severe it is. Services could include - but are not limited to - in-home care, job training, family support services and child care assistance.

The need for services for these residents has especially soared in the past few years, and local non-profits say they're overwhelmed.

The Arc of the Central Chesapeake Region, for example, serves 1,200 clients in Anne Arundel and four Eastern Shore counties. Officials there have seen a 537 percent increase in requests for help, said Kristen Lasker, the Arc's director of development and marketing.

"It's exploding, and it's going to explode some more," Dr. Ireland said.

Families seeking services for current and future needs apply through the DDA at one of four regional offices. Anne Arundel residents seek help through the Central Maryland Regional Office in Owings Mills.

The DDA evaluates their cases, determining eligibility for services and how urgent their situations are. Four years ago, there were 9,697 people waiting for help. There are 17,250 today.

Ninety-four percent of those on the list need help now, said Michelle Hart, co-director of public policy initiatives for the Maryland Developmental Disabilities Council. The council has launched the End The Wait Now Campaign to push for more money to get people help.

'I like a challenge'

Helen Lanham of Odenton knows all about waiting. Her 21-year-old son, Trevor, has cerebral palsy resulting from shaken baby syndrome, while her 19-year-old daughter, Crystal, suffered head trauma as a baby and can neither walk nor talk.

Crystal has a seizure disorder and is prone to screaming out and biting herself and others when agitated, and she's blind and paralyzed on her right side.

Ms. Lanham took them in as foster children when they were both about 6 months old, and later adopted them. She's cared for 56 foster children with special needs.

"I like a challenge," the 69-year-old widow said. "I've challenged myself, and now I'm challenging the state."

At one point, she said, she was told she wasn't eligible for funds because she and her husband made too much money. At the time, her husband was dying of cancer and she was caring for two disabled children.

"I feel that sometimes certain cases need different evaluations," Ms. Lanham said.

Right now, what she needs most is respite care for her daughter, someone who will come in and care for her for a few hours.

After being on the waiting list for years - she can't even remember how long - Ms. Lanham received a total of $600 from the Arc to use toward respite care. It runs out in July, and she has no idea if she'll get more.

"That means I'm stuck again," she said.

She's been a little luckier with her son. He's enrolled in a county-funded transitional life skills program at Anne Arundel Community College, and is set to graduate in June.

After that, he's heading to the Providence Center in Glen Burnie, a workshop that teaches job skills. He hopes to get a job as a greeter at a local Bob Evans restaurant.

"With him, I can get him moving so he can eventually become independent," Ms. Lanham said. "But she'll never be self-sufficient."

She'll keep pushing, though, to find the funds to place her daughter in some kind of community home sooner or later. After all, Ms. Lanham won't be around forever.

"I want to make sure there is a proper place for her," Ms. Lanham said. "It's scary. I've been taking care of her since she was a baby."

Expensive problem

Ms. Hart estimates it would take hundreds of millions of dollars to get everyone on the list the help they need. Because that number is unrealistic, the council is lobbying for the state to include $10 million in its fiscal 2009 supplemental budget to get services to eligible people.

"If we don't put any money toward it - the waiting list is going to continue to grow," Ms. Hart said.

Case loads aren't all that have increased.

"Every day, we are trying to do more with less," said Vicki Callahan, executive director of Hanover-based Opportunity Builders Inc.

The agency provides job training and placement for developmentally disabled county residents. Ms. Callahan has been at OBI for 21 years, and it gets tougher to avoid a deficit every year, she said.

She pointed to skyrocketing gas prices as one example. Statistics provided by the Maryland Association of Community Services show that gas costs for agencies increased 80 percent between 2001 and 2006.

OBI copes with high fuel costs by consolidating trips as much as possible and is thinking of downsizing from vans to sedans, Ms. Callahan said.

"We continue to be as creative as we possibly can," she said.

But agencies can only be so creative, said Tracy Lynott, Bello Machre's development director. The Association of Community Services also says rent increased 42 percent from 2001 through 2006, and utilities increased 39 percent during that time.

Rick Callahan, The Arc's deputy executive director, said employee wages and benefits are his group's biggest expense.

The median salary for a developmental disabilities direct support staff member in Anne Arundel County is $22,817, state statistics show. But the average salary for a high school graduate in the county is $34,954, said Mr. Callahan, who's married to Vicki Callahan.

Those jobs typically don't require a college degree, but they require hundreds of hours of specialized training, he said. Salaries must be competitive to attract talented, hard-working employees.

"Without good quality staff, there's great potential that your services will suffer," Mr. Callahan said.

The Coordinating Center Inc. in Millersville operates a little differently than other non-profits, but it still feels the pinch, communications director Barbara McCord said.

The center, which serves people of all ages and disabilities, receives funding through contracts with Maryland Medicaid. Those contracts only cover medical necessities, Ms. McCord said. So families, many of whom are low-income, turn to the center for help paying for food, emergency child care and even transportation costs.

"The need is increasing exponentially," Ms. McCord said. "The economy is bad, and foundations are pulling back because the economy is bad."

Pleas for help

Agencies that provide developmental disabilities services get the bulk of their funding from the state, with smaller amounts coming from private donations and grants.

At The Arc, for example, 90 percent of the agency's $10 million annual budget comes from the state. Eighty percent of Bello Machre's $11 million annual budget is state funded.

"Maryland is one of the wealthiest states in the country, and yet we rank 44th in human services funding," Ms. Lasker said. "That's just embarrassing."

Agencies got a boost in 2006, when the General Assembly passed legislation asking the governor to include in his yearly budget a cost-of-living increase for providers.

The recommended increase is set by the Community Services Reimbursement Rate Commission, and is capped at no more than 5 percent. It's also subject to how much money the state has.

Last year, the first year the law took effect, providers were supposed to receive a 3.87 percent inflationary increase in funds. They instead received 2 percent because of state budget limitations.

This year, they received a 1.5 percent increase instead of the recommended 4 percent. A joint Senate/House Bill is pending that would require the COLA to be passed regardless of the budget. Another joint bill is in the works to continue funding for the commission, a part of the state Department of Health and Mental Hygiene.

The commission is up for legislative renewal this session. County service providers lobbied the Anne Arundel County legislative delegation this month in honor of Developmental Disabilities Awareness Month, asking lawmakers to fight for additional funds to cover the remainder of the suggested COLA.

In response, the delegation wrote a letter March 17 to Gov. Martin O'Malley, asking him to include an additional $9.8 million in the 2009 supplemental budget.

"Over 22,000 adults and children in Maryland with developmental disabilities receive community-based services, and their services will be jeopardized if the state does not provide these critically needed funds," the delegation wrote in a letter signed by Chairman Mary Ann Love, D-Glen Burnie, and Vice Chairman Virginia P. Clagett, D-West River. Mrs. Love echoed the idea that there is a crisis in developmental disabilities services.

"We have had a waiting list since I've been here, and I've been here for 14 years," she said. "One of the reasons that the waiting list got so big is because of the number of parents who kept their children at home and took care of them."

Eventually, those parents grew older and could no longer care for their children.

"I've been here through good times and bad times, and in good times, we were really chiseling away at that list," Mrs. Love said. That was eight years ago. But the economy is now taking a nosedive, and there is less money to go around. The state does try to help, Mrs. Love said, but no one ever knows how much developmental disabilities services will get until the budget is finalized.

A draft of the 2009 budget includes $788 million for these services, but the General Assembly still has to vote on it.

Dr. Ireland said private donors continue to be generous, but times are tight for them, too.

"Most of our supporters are very committed to our cause, but it's a challenge," he said. "Where someone gave $100 before, they might now give $75 or $50."

Grants and private donations paid for OBI's planned $9.4 million facility in Millersville, Ms. Callahan said. County agencies do seem to look at funding as a team effort, Mrs. Love said, pointing out that they all banded together to lobby the delegation.

"This is a population that no matter how you look at it, you have to care for them," she said.

An accomplishment

Many who have received services say the assistance has given them a sense of self-worth. David Baker of Severn is one of those people.

He wanted to work. He just didn't know how to find an employer who would accommodate him.

Mr. Baker, 36, has mild cerebral palsy, which makes writing and speaking difficult. He also has learning disabilities - particularly in math - though his IQ is in the normal range.

"If it takes you a week to learn something, it might take me three weeks," he said. After graduating from the Harbor School in Annapolis in 1991, he tried several jobs at an area day care center, but they didn't work out. One position was in a classroom, which required lots of writing, a challenge because of Mr. Baker's disabilities. So he and his mom, Kathleen Baker, went to OBI.

After working with OBI job trainers, Mr. Baker landed a job at Auntie Anne's Pretzels in Arundel Mills Mall and is now a part-time assistant shift manager.

"They have made it possible for David to be a contributing tax payer for eight years," Ms. Baker said of OBI.

She said she's meeting more and more people with children who need a little extra assistance, though it's hard to say why.

"I'm not an expert, though it seems there are fewer and fewer unskilled jobs every week. Our society is becoming more technology-based," Ms. Baker said. "Places like OBI are absolutely essential."

Eric Ondrovik receives services from OBI as well as Bello Machre. Through OBI, he works at Old Navy at Arundel Mills four days a week, handing out credit card applications.

"If people don't know where stuff is, I try to help them out," said Mr. Ondrovik, who uses a wheelchair to get around.

The money he makes there helps fund his annual visits to Camp Greentop in Frederick, a camp for people with disabilities. Bello Machre pays for part of it, and he covers the rest, Mr. Ondrovik explained.

"We're always looking for independence, and the only way you're going to get that is by going out into the community," he said. Helping the developmentally disabled become independent has many benefits, service providers say.

First of all, it gives them a huge sense of accomplishment, Ms. Lasker said. But investing in developmental disabilities services today could also save tax money in the future, she said.

"Instead of sitting in an institution somewhere, they become productive members of the community," she said. "They are good workers, and they take so much pride in what they do."