In Pennsylvania, 18,000 people with intellectual disabilities await community-based services

From The Patriot-News in Harrisburg, Pa.:

Christa Best (pictured) has a big heart, a love of animals and an ear for country music.

The 21-year-old Susquehanna Twp. High School graduate is a directional savant — she can tell you exactly how to get back to anywhere she’s been — and is amazingly resilient, her adoptive mother, Carol Carp, says.

Christa came to Carp as a foster child when she was 7, and although she was only supposed to stay six weeks, the family adopted her.

Christa has intellectual disabilities and has been diagnosed with severe reactive attachment disorder, a psychiatric illness often found in children who have had severe problems or disruptions in their early relationships. She will likely never hold a job or live on her own, Carp said.

Carp, 54, said she worries that one day she might be unable to care for Best. Carp has been trying for several years to get Best into a small group home where caregivers could provide the structure and routine she needs.

“As I get older, it’s harder for me to care for her — she’s strong and bigger than I am,” Carp said. “Other mothers have the same issues. I worry about my health. I work full time and I have other children at home plus an elderly father.”

Best is one of nearly 18,000 people statewide who are waiting for community-based mental retardation services. Of those, 3,160 are considered to have emergency needs, meaning they could have to move to a state institution if they cannot gain access to community-based services.

Gov. Ed Rendell proposed a small increase to the community mental retardation waiver program, which would help the state Department of Public Welfare add 150 people, including 100 special-education high school graduates, to the program.

The program provides services such as home or vehicle-accessibility adaptations, therapy, nursing, educational support and transportation to about 24,500 people, according to the department.

Lawmakers and advocates for those with disabilities expressed disappointment at a recent budget hearing that the increase was not large enough to accommodate even more people. The mental retardation waiver program is primarily federally funded but received about $623 million in state money this year.

While providing for a small increase in the waiver program, the governor’s budget proposal also includes a $6 million cut to those who provide the mental retardation services. Department Secretary Harriet Dichter defended the 1 percent cut, saying it’s the first reduction in payments the Rendell administration has posed.

But in March, Sen. Mary Jo White, R-Venango County, said, “I think this is a train wreck waiting to happen.”

Dicther said the department chose to give the waiver program a small increase rather than prevent the 1 percent cut to service providers to allow a few more people in “a highly vulnerable” group to gain access to community-based services.

Far more than 150 people need services, and that worries Stephen Suroviec, the executive director of the Arc of Pennsylvania, an advocacy organization for individuals with intellectual and developmental disabilities. He said that even a small funding cut to providers will have a big impact on what providers can offer.

Rendell “is expecting [providers] to serve everybody the same, but with this much less money,” Suroviec said. “The problem is community providers in this system are basically 100 percent funded with public dollars.”

They can’t shift costs around to make ends meet the way a business might be able to do, he said.

Suroviec said about 1,200 people are in the state’s five Centers for the Mentally Retarded and about 49,000 get community-based services.

“It’s so disproportionate, he said. “The primary system is the community system, and it’s being starved.”

It costs about $240,000 per person annually to house and serve each person in one of the state’s institutions, said Ilene Shane, head of the Disability Rights Network of Pennsylvania.

“That’s not a direction you really want to see the state go,” Shane said. “It’s not only inhumane, but very ineffective.”

Advocates favor keeping individuals with disabilities in their communities with support services, including placements in small group homes, rather than putting them into state institutions.

The Pennsylvania Waiting List Campaign, which is funded by the Disability Rights Network, tracks the number of people waiting for a variety of community-based services. The campaign estimates that in addition to the 3,160 considered to have an emergency need, another 8,700 people have a “critical need,” meaning they will need services within two years, said Sheila Stasko, the statewide coordinator for the campaign.

“The people in the critical category are just a heartbeat away from emergency,” Stasko said.

Disability-rights advocates and lawmakers worry that only 100 graduating high school seniors, compared to 700 students in previous years, will be able to receive support after graduation this year under Rendell’s proposed budget, Shane said.

Shane said parents depend on their children and young adults having a place to go during the day, or supports to help them live on their own so they as parents can continue to work.

“When students turn 21, they age out of every program that supports them,” Shane said. “Normally, that’s where the community services would come in.”

Without funding for supports for recent graduates, especially those who cannot be left alone, parents may be forced to quit their jobs to care for their son or daughter, and the student “will regress terribly,” she said.

Carp said Christa Best receives employment-skills training, which gives her something for her to do a few hours each day, even if Best probably won’t be fully independent. Carp feels that a group home placement would be the best thing for Best in the long term.

“A group home is good and would provide what she needed,” Carp said. “She’s not getting the attention she needs [here], and she needs a lot of attention.”