Pennsylvania is failing disabled individuals & their families | Opinion

Pennsylvania is failing individuals with intellectual and developmental disabilities (IDD) and their families. There’s no other way to say it.

This isn’t something that happened overnight, either. We all saw it coming. Years of chronic underfunding have pushed the state’s support system past its breaking point to this moment of reckoning.

Today, family members are quitting their jobs to fulfill the role that direct support professionals (DSPs) once provided.

Over the long-term, DSPs got to know the individuals and families they worked with, creating consistency of care, improved outcomes, and high-quality supports. But without them, the burden falls entirely to family members.

It’s unsustainable—and dangerous.

Individuals in crisis find it harder to access care, if they can find it at all, and their loved ones have no respite. Family caregivers are physically and emotionally strained and financially drained, with nowhere to turn for help, as programs reduce or eliminate services entirely.

Individuals with cognitive or behavioral disabilities, as well as sometimes physical disabilities, require extensive accommodations and supports, and often direct and continuous supervision. They’re not getting it. Family members can only do so much without help.

The Arc of Pennsylvania is the state’s largest and leading advocacy organization promoting the human rights of individuals with intellectual and developmental disabilities. We have more than 8,000 members in 30 chapters across the commonwealth.

The current situation is unlike anything we have ever seen.

Providers are terminating programs, closing facilities and care centers, or limiting the number of people they serve because of staffing shortages. Individuals approved for services cannot find providers with the capacity to offer the services they need and to which they are entitled.

This is especially true for the approximately 35,000 individuals with intellectual and developmental disabilities or autism who live at home rather than in a community setting. They’re stuck at home, with nowhere to go.

Socialization is an essential part of care. So is personal fulfillment.

But insufficient rate schedules have resulted in the closure of vocational programs where disabled individuals could achieve daily living goals in a safe and welcoming environment.

The pain is real across the spectrum of services these individuals and their families need and deserve. It is heartbreaking to hear and see these stories.

The quality of life for individuals with intellectual and developmental disabilities has diminished greatly—and only promises to worsen without immediate action.

As a commonwealth, we have a responsibility to take care of our most vulnerable residents. But policy-makers at every level have turned their collective backs on individuals with intellectual and developmental disabilities, instead relying on families to prop up a critical life-support system that the state won’t adequately support.

This crisis has devastated families and individuals across Pennsylvania.

State lawmakers have the opportunity—and responsibility—to help by increasing human services funding in the 2023-24 fiscal year budget. We’re way past kicking the can down the road—again.

These individuals have waited long enough, and their families have propped up the system for far too long. It’s time we give them the support they need and truly deserve.

Sherri Landis is the executive director of The Arc of Pennsylvania.