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Tackling a Tough Issue
By Toni Di Domizio, The Times Herald
June 4, 2009
The state and county are facing a quiet crisis of desperation.
When an intellectually or developmentally disabled teen graduates from high school, they no longer receive services from the school district and are on their own.
When elderly parents with an intellectually or developmentally disabled son or daughter realize they will not outlive their child, they begin to worry about what will happen to their loved one after they are gone.
These individuals are subject to a lengthy waiting list for housing and community services, and state Rep. Kate Harper, R-61st District, has introduced legislation again in House Bill 1247, calling for the Department of Public Welfare to develop an action plan to eliminate emergency and critical segments of the waiting list by 2012.
“The reason for the bill is this: after a generation of individuals with disabilities being raised at home with education opportunities and good medical care, there are many families facing the painful issue of where the disabled child, now an adult, will live when mom and dad are elderly and facing health issues and are unable to care for them,” Harper said.
This “Bill of Rights” aims to recognize the challenges people with intellectual and developmental disabilities face daily, including discrimination, lack of public awareness and lack of access to support services.
The action plan in the legislation also calls for inclusion of statistical information on current and projected increases in the waiting list on a county basis, as well as financial information on the amount of additional federal, state and other funds needed to provide services necessary to eliminate the waiting list.
There are 20,924 individuals on the waiting list for services in Pennsylvania. Of that, more than 4,500 are on the emergency waiting list, more than 9,600 on the critical list and more than 6,700 on the planning list.
In Montgomery County, there are 1,067 on the list.
The emergency waiting list is people who need beds or services today or within the next six months.
“Generally speaking, those are the only one the state is able to address,” said David Crosson, executive director of Indian Creek Foundation, a nonprofit provider of care and support to individuals with developmental disabilities and autism, based in Franconia.
The critical list is people who need services more than six months and less than two years from now. The planning list is people who need services more than two years from now, but less than five years.
“The bill seeks to require the commonwealth to recognize these needs and to plan for them through the gradual elimination of the lengthy waiting list for community living arrangements and other services,” Harper said. “Presently, we have a long waiting list and are falling short of the need.”
She said people would never stand to wait months or years to access treatment or support services for physical injuries, yet that is precisely what the state is asking people with disabilities to do.
Former Gov. Tom Ridge began a five-year initiative during his tenure to eliminate the waiting list. In year one, the plan started down the right road, and then Ridge was called to be director of Homeland Security.
“We got all excited, and then the budgets got tight and it kind of disappeared,” Crosson said. “The state has tried to address the needs in the last couple of years, but it’s become more serious and the extensive stuff has not gotten better.”
Crosson said those on the waiting list are in line to get into the funding stream, also called a waiver program.
“Once they are approved to be funded by the waiver, then they will get into a facility,” Crosson said. “Each county has so many beds available, and what Harper is trying to do is to increase those numbers of beds so the waiting list number goes down. There are limited dollars for expansion, and most have to wait until someone else in the system passes on or moves out of the state.”
Indian Creek Foundation does not have a waiting list, per se, Crosson said.
“Once they get into the waiver program (on the county level), they then go to Indian Creek, Developmental Enterprises, Ken-Crest Services or Life Path in Sellersville,” he said. “Those are some agencies in our immediate area here.”
Every person has different needs, so some may need to go into a 24-hour care group home, of which Indian Creek operates 20 in the area. Others, he said, need vocational training programs.
“It’s tragic. Until a person is 21, their responsibility for the school system is through the Intermediate Unit. After they graduate, and since they can’t get into services, they sit at home and lose skills that the school district helped them gain,” Crosson said. “They are trying to do that better, so the hope is there.”
A great majority of public funding comes from the county and state, Crosson said.
“They have to wait for the waiver to fund them,” he said. “There are people that need a bed tonight, and the county officials are struggling trying to find a place for an individual. What Harper is introducing is for a very real problem, and she’s right on the money.”
Crosson personally believes that group homes that have no more than four people in them should raise the occupancy to five.
“There’s a move,” he said. “An additional fifth person is a very cheap alternative. If you add one bed to all group homes in Montgomery County and Pennsylvania, you’d have a significant impact on that waiting list. It’s not impossible.”
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