Crisis in Care

By ALLISON BOURG Staff Writer

In many ways, Terri Kellum considers herself lucky.

Thanks to funding from the state Developmental Disabilities Administration, the Brooklyn Park woman has the resources to care for her 24-year-old daughter, Casey Mueller., who was diagnosed with Batten disease as a child.

The rare degenerative disorder attacks the brain, leaving Ms. Mueller blind and unable to walk or talk. She needs around-the- clock care, and goes to the Providence Center in Millersville daily as well as Kennedy Krieger Institute in Baltimore.

"Because she’s considered medically fragile, she’s at the top of the list for funding," Ms. Kellum said.

Not everyone, though, is as fortunate. So Ms. Kellum and others are taking action as the state’s massive waiting list for developmental disability services continues to grow.

Calling respite care one of the biggest needs for families of disabled children and adults, Ms. Kellum founded Buddy Break at North Arundel Church in Glen Burnie this summer.

The faith-based program, part of the Nathaniel’s Hope organization in Orlando, pairs disabled children with church volunteers for one Saturday morning each month.

Caregivers have the morning free to do whatever they want – a rarity for the parent or guardian of a developmentally disabled child.

"As a parent, you just get physically drained," Ms. Kellum said. "Just having a few hours to yourself is so important." If the state doesn’t have the money to help, she believes it’s up to people like her.

"I think the community needs to come together and do something," she said.

In Maryland, more than 22,000 developmentally disabled people like Ms. Mueller receive state-funded developmental disabilities services, but thousands more are waiting for help.

As of last month, the DDA waiting list topped 18,000 residents statewide, with more than 1,100 of them living in Anne Arundel County.

Cristine Marchand, executive director of The Arc of Maryland, said respite care – short-term care for a disabled individual – falls under the support services category. More than 11,000 people across Maryland are waiting for those services.

While there’s no way to know how many people are waiting specifically for respite, families tell her organization that’s it’s the biggest single need, Ms. Marchand said.

"I kind of call respite care the glue," she said. "Without it, families just fall apart."

North Arundel Church’s first Buddy Break will be held today, and future sessions are planned for the second Saturday of every month. Nathaniel’s Hope provides training for buddies, and all volunteers go through a background check.

Children will spend time on arts and crafts, play games and study the Bible, and siblings of disabled children are also welcome to participate in the program to give parents as much of a break as possible. The program also helps adults with developmental disabilities.

"It’s really for anyone who needs to get out," said volunteer Cheryl Meek of Pasadena, who has cerebral palsy.

In addition to the Buddy Break, Ms. Kellum has also launched Casey’s Gift, a ministry named for her daughter. At the core of the program are Sunday school classes for special needs children and young adults.

Sunday school teacher Kim Gayleard said about six children are in the class now.

"It’s very rewarding – it’s just a gift from God to be able to do this," said the Brooklyn Park woman, whose spina bifida keeps her confined to a wheelchair.

Parishioners at North Arundel Church – who call their house of worship the perfect church for imperfect people – are known for welcoming everyone with open arms, church members say. That made it the ideal place to launch a disabilities ministry, Ms. Kellum said.

"They all love her like family here," she said of her daughter.

A big need

Anne Arundel County has seven non-profit agencies that provide services for developmentally disabled residents, and most provide respite care. Parents or caregivers seeking respite care can apply through any of the local agencies that offer the service.

It’s designed to give the primary caregiver a break – either during emergency situations or planned events – and could last from a few hours to several days, though the DDA limits respite care to 45 days per year.

"If money wasn’t an issue, we could open 10 respite care homes tomorrow," said Robert Ireland, executive director of Bello Machre in Glen Burnie. "But it’s part of a wide spectrum of services for which there is little or no funding."

The agency runs a home in Glen Burnie just for respite care that serves 40 to 50 families each year. After it opened in 2000, a three- year grant from the Harry and Jeannette Weinberg Foundation brought in an extra $25,000 per year. Those funds expired last year, but the program still continues.

Bello Machre also offers respite care services in several of its group homes around the county, as well as in-home services.

"With the waiting list being so long, it doesn’t take the place of a regular day program," said Dr. Ireland, who said the agency spends about 1 percent of its annual budget, or $160,000, on respite care. "It doesn’t fix the problem, but it helps families hang on."

No matter what your child’s disability is, respite care is "1,000 percent" needed, said Sally Kootsikas of Linthicum.

Her 39-year-old daughter, Diana, is a longtime client of Opportunity Builders Inc. in Hanover. Diana has mild mental retardation and other disabilities, but functions well enough to hold down a volunteer job at Marley Elementary School in Glen Burnie.

"That doesn’t mean we’re happy going away for a few weeks and leaving her," said Ms. Kootsikas, a retired county school teacher.

She applied for respite several years ago through Bello Machre when she and her husband were going away on a trip for several weeks. The agency matched them up with a couple in Severna Park who work for The Arc, providing respite care out of their home.

"It was what my husband and I needed, and we felt so safe and secure knowing she was somewhere where she would be taken care of," Ms. Kootsikas said. "They are a godsend."

Michael Walbert, The Providence Center’s director of production, said the demand for respite care services is growing as baby boomers age. Older people who have disabled children living at home with them are usually the ones who need respite the most, Mr. Walbert said.

"A lot of families like to keep their children at home if possible, but 24/7 can get difficult," Mr. Walbert said. "In the past, it’s been all or nothing."

Respite care has become a lot more popular in the last decade because it allows guardians to keep their children at home, yet still allows them to take a break when they need one, he said.

The Providence Center’s respite program is a small one; three clients there, all older than 60, have been funded for up to two weeks of respite care each year.

"To me, it’s a safety valve," Mr. Walbert said. "It’s a proactive program, there to help a person before there’s a crisis. But the issue is always with money."

Brian Cox, executive director of the Maryland Developmental Disabilities Council, said families often turn to respite care while they wait for other services.

"I think it’s fair to say that a lot of families have very specific needs, and the longer they go without some of those needs being met, the more likely they are to fall back on respite care," Mr. Cox said.

There are many parents of disabled children who haven’t been able to go out to dinner together in years, he said.

That’s why Ms. Kellum and her group of volunteers are taking matters into their own hands. But they’re not the only ones.

Chantell Madison of Baltimore has been working in the developmental disabilities field since she was a teen, when her mother worked at Bello Machre. She now works at OBI as a one-on-one instructor and van driver and at the Arc of the Central Chesapeake Region as part of the community support staff.

Last fall, she began offering respite care services to clients after one parent approached her at OBI.

"A lot of parents are looking for someone to take their son or daughter while they go on vacation," she said.

Ms. Madison said she offers respite services independent of OBI and The Arc, though her clients are those she’s worked with at the agencies. Her main client is a 30-year-old woman with behavioral problems whose family she met at OBI.

"It’s very hard for parents to deal with certain situations," Ms. Madison said. "With all kids, sometimes you just need a break. It’s the same with kids with developmental disabilities."

She recently moved into a home with a few extra bedrooms, one specifically for respite care.

"Most people don’t have the time or the space to do something like this, but I have all that," Ms. Madison said. "I see myself doing this for at least 20 more years."

To volunteer or to sign up for the Buddy Break at North Arundel Church, call 410-787-9893.

‘IF MONEY WASN’T AN ISSUE, WE COULD OPEN 10 RESPITE CARE HOMES TOMORROW’

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