The Herald, Sharon, Pa.

Opinion

June 24, 2014

Parents of special-needs kids losing hope for help

HARRISBURG — Any parent of school-aged children knows that summer break is not much of a break. That’s why the summer camp business is booming.

For parents whose children have special needs, the break means no respite from providing nonstop supervision and care. Matters are more tenuous for those living on low incomes who are unlucky enough to be waiting for state help – especially now that a $1.4 billion budget crisis means they’ll likely get no help at all.

Lawmakers have been bandying around a 2014-15 budget that doesn’t increase spending from this year. Gov. Tom Corbett’s original $29.4 billion budget proposal, released in February, would have increased spending 3.3 percent.

Taxes collected since then have drastically underperformed the governor’s projections, opening up a budget hole.

The situation is so desperate that Corbett last week told reporters he is prepared to miss the June 30 deadline to pass a budget in order to get one that works.

“We need to get this done right rather than quickly,” he said at a news conference.

Corbett is trying to coax the Legislature into action on pension reform and efforts to dismantle, or at least tinker with, the state-run liquor monopoly. Without those Corbett is loathe to go along with any tax increases that would pay for new school funding or provide relief to people like Pam Novak.

Pam’s 17-year-old son, Jeffrey, has a form of autism and epilepsy. Nine months of the year, Jeffrey goes to school, allowing his mom to get in a shift of waitressing to help pay the bills.

As summer starts, Pam can’t go to work with Jeffrey home from school and social services unable to provide the help she needs.

“It’s a Catch-22,” she said Thursday from her home in Allegheny County. “They want people to work. But I can’t go to work, and that’s a concern because I’m not able to provide for my son.”

Since Corbett took office in 2011, more than 3,000 Pennsylvanians with disabilities have moved from a waiting list into programs where they receive state support. About 4,000 more remain on an emergency waiting list – meaning they need services immediately.

Corbett had called for more than $20 million in new spending to pay for home services for 1,000 of those people.

In March, The PA Waiting List Campaign and The ARC gave Corbett an award for championing families of those with disabilities. Two weeks ago, advocates for increased funding said they were “cautiously optimistic” that their money would survive the budget process.

But, as June has progressed with little traction on anything that solves this mess, advocates are more cautious than optimistic.

“The Waiting List Campaign was just informed that we may have lost the entire $22.4 million,” Nancy Murray, head of The ARC of Allegheny County, said in an e-mail. Some lawmakers are trying to get some of that money restored, she said.

Novak and the advocates say they don’t think their plight is a secret. Lobbying lawmakers for money is difficult for families that must provide round-the-clock care for loved ones with disabilities. But the need is so desperate that they make the time.

Novak traveled to Harrisburg last fall to share her story.

But, she worries that in the crush of lobbying and deal-making and vote-counting in the days ahead, her voice will be drowned out.

“It always seems to be that the people who need to help the most are the ones who get left out,” she said.

John Finnerty covers state government and politics for CNHI News Service. E-mail him at jfinnerty@cnhi.com and follow him on Twitter: @cnhipa.

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