NEW CASTLE —
Families of people with mental disabilities know what it means to wait for the state.
More than 13,000 families are in line for benefits to help care for someone with a intellectual disability, including 4,000 deemed to need immediate help.
Gov. Tom Corbett’s budget last year included enough money to move only a fraction — 1,100 families — off the waiting list for services. Corbett’s budget for the coming year includes $23.5 million to help waiting families, including almost one-third of those considered to have emergency cases.
The Corbett administration said the new funding will help about 1,200 families, which would mean an average benefit of about $19,500.
Pennsylvania already provides this type of funding for community-based care to 48,601 families across the Commonwealth, said Kathaleen Gillis, Department of Public Welfare spokeswoman. But that means about 20 percent of the families who need such services are stuck on the waiting list.
Advocates welcome the money and attention.
“I’m encouraged,” said Nancy Murray, mother of two adult children with mental disabilities and president of The Arc of Greater Pittsburgh, which serves people with disabilities.
Lisa Tesler, director of policy for the Pennsylvania Waiting List Campaign, said the state has been making progress since her organization was founded 17 years ago to help create a list of those seeking state services.
A decade ago, Tesler said, the list had about 21,000 families on it.
The waiting list distinguishes among those with an emergency need, those whose situations are critical and need help within two years, and families expected to require help within five years. Emergency cases often involve single parents who must provide round-the-clock care for a child with a mental disability, or families in which a disabled child is being raised by grandparents.
Such circumstances are familiar to Pamela Novak, a single mom from Allegheny County, who is on the emergency waiting list for help caring for her 16-year-old son, Jeffrey.
Jeffrey has an intellectual disability — a form of autism and epilepsy, Novak said. He has no perception of danger or ability to discern that he should not approach strangers.
“He cannot take care of his personal needs independently,” she said.
The only work that Novak’s been able to get is a waitressing job that allows her to adjust her schedule around her son’s needs. Her pay isn’t enough for personal care attendants to help Jeffrey while she works, she said. They cost double what she makes at work.
“I can’t do it alone,” she said. “I need the help.”
Her situation is so desperate that while she awaits state benefits, Allegheny County dipped into another account to give her interim assistance with her son. Caregivers spend 13 hours a week with Jeffrey, working with him on life skills and communication.
But Novak said she has no idea how long that money will be available.
“I haven’t been told when the help runs out,” she said. “It’s stressful.”
Murray said the Novaks are typical of those on the emergency waiting list who are burdened by daily activities that many others take for granted.
Murray recalled a recent incident in which she was leaving a conference and watched a mom struggle to get her 15-year-old son from his wheelchair into a vehicle.
The mom got the boy out of the wheelchair, then maneuvered the chair to a ramp to load it into the van. As she tried to move the chair inside the van, its battery must have died, having been used all day at the event.
The wheelchair rolled back down the ramp.
“It took her 15 minutes to do all the things she needed to do, just to get into the vehicle,” Murray said. “You stop and think, ‘How do they do this day in and day out?’”
“You will never meet more resilient people than families of disabled children,” Murray said. “You become resilient because you have no choice.”
Tesler said much of the state’s focus has been on providing assistance to families that will need to arrange 24-hour care for dependent adults who are reaching the end of school age.
Corbett’s budget would also move 50 individuals with mental disabilities out of five state centers — Ebensburg, Hamburg, Polk, Selinsgrove and White Haven — that now care for 1,010 individuals.
On the list ...
Lawrence County has 142 people on a waiting list for help.
According to the Pennsylvania Waiting List Campaign, which provided the figures, they are in three categories. Those on the emergency list are considered in need of immediate aid. Those on critical list need help within two years and those on the planning list are expected to require help within five years.
The numbers are: emergency, 31; critical, 64; planning, 47.