Philly Inquirer Series: "Falling Off The Cliff" Strong State Leadership Required as ID/A Crisis Worsens

PAR Mail 2017-247 | December 5, 2017

Philly Inquirer Series: " Falling Off The Cliff" Strong State Leadership Required as ID/A Crisis Worsens

Reform will require all hands on deck

Philadelphia Inquirer writer Ronnie Polaneczky has written a heartbreaking four-part series that brings attention to the crisis that exists for people with developmental disabilities, their families, the Direct Support Professional workforce and the organizations that exist to help people live in the community.

The series, titled " Falling off the Cliff," details the result of what has happened to Commonwealth of Pennsylvania citizens with ID/A who have suffered for years with under-funding resulting in poverty level wages for direct support professionals, and a system ill equipped to address the horrific waiting lists for thousands seeking service and supports.

For PAR members, self advocates, family members and allies, the frightening details of the Philadelphia Inquirer story are only too well known. Addressing the crisis issues raised about services and supports, finding and retaining a qualified workforce, helping people with disabilities find employment and what happens to people with ID/A after their parents die will take strong leadership from all of our state's leaders from top to bottom.

The concerns of people with ID/A is not a Republican or Democratic issue. It cannot be solved alone by the Governor, the Department of Human Services or the Office of Developmental Programs, the Legislature or PAR.

The problems surrounding our state's worsening ID/A crisis can only be solved by coming together, working together in a transparent environment, and committing the resources needed to improve the lives of people with ID/A. Strengthening the provider system, paying DSPs a living wage, and agreeing to being honest with each other about the depth of our problems and needed solutions is the pathway we must pursue.

PAR looks forward to seeing how our leaders in state government respond to this crisis.

This is a time for leadership.

Shirley Walker, PAR President/CEO

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READ PART ONE: Falling Off the Cliff

Their stories could fill a book. But each would only nick the surface of a crisis that is barreling toward us like a tsunami: We will soon have more intellectually and developmentally disabled adults living in this country than at any other time in our history.

Advances in medical care have allowed kids born with Down syndrome, for example, to live twice as long as they did just 20 years ago. And the explosion in the number of children with autism -- one in 68 children are now diagnosed -- means we'll soon have a vast population of adults in need of services like those Christina's family had hoped would keep her safe.

Add these numbers to those of children born with the two other most common roots of intellectual disability -- Fragile X syndrome and fetal alcohol spectrum disorder -- and we have a looming social, economic, and moral crisis. What will we do about, with, and for these vulnerable adults and the families who struggle to care for them? And how much are we willing to pay for it?

What families have dealt with is shocking.

And it takes public support. Indeed, every time a new state budget is considered, families shudder at the possibility that Medicaid dollars, which they rely on for services, will be slashed.

Last year, Harrisburg legislators designated $6.2 million to fund services and supports for people with disabilities. The Department of Human Services, whose Office of Developmental Programs oversees disability programs, used the money to close a budget deficit.

PART TWO:

FINDING GOOD HELP

The state sets the rates that support professionals are paid via the waivers. In Pennsylvania, it equates to an average $11.17 an hour. That's roughly half of what MIT has determined to be a living wage here for a family of two, points out Kathy Brown McHale, CEO of Special People in the Northeast Inc. (SPIN) , a local provider of services to people with intellectual disability and autism.

"Yet they're expected to possess professional skills and knowledge and demonstrate the highest of values and ethics," says McHale, who is also board chair of Pennsylvania Advocacy and Resources for Autism and Intellectual Disability [PAR] and — more important — mother to an intellectually disabled daughter, 26...

That ongoing, heartbreaking possibility exists for clients with disabilities who depend on direct support professionals. And it frustrates Maureen Devaney, mother of an intellectually disabled daughter and cofounder of Vision for Equality, an advocacy group for individuals with disabilities and the loved ones who care about them.

DSPs, she says, "are devalued people caring for devalued people. Their work is hard and they're paid so little. After a while even the most dedicated ones think about leaving."

PART THREE:

FINDING WORK

The numbers tell the story.

Only 33.7 percent of working-age adults with disabilities are employed, compared with 72.9 percent of people without disabilities, according to the Institute for Community Inclusion, based at the University of Massachusetts.

For working-age adults who have intellectual and developmental disabilities, the number plunges to just 16 percent.

No wonder the Heppards were giddy about what looked like a sure job offer. Their son had fallen off the cliff into a wide net that could hold him for years, maybe for life.

The relief this can bring for parents of adult children with I/DD cannot be underestimated.

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PART FOUR:

LIFE AFTER DEATH

"Many parents keep their children with them in the family home for years and take care of them on their own. We don't even know these families exist until an emergency occurs," Pace says.

The lone surviving, elderly parent dies, perhaps, or has become too frail or sick themselves to provide care.

"Parents always think they have more time, until something happens. And then we have to rush to find a placement. It's far from ideal."

Adult children with intellectual and developmental disabilities can wind up with family unprepared to care for them. Or in a nursing home whose staff are unfamiliar with their complicated medical or behavioral diagnoses.