Thousands with autism or intellectual disabilities at risk in Pa.

Anne Couldridge
The Arc of Cumberland & Perry Counties.
Anne Couldridge

An Open Letter to All of Pennsylvania’s State Lawmakers:

Pennsylvania’s system for delivering care to individuals with Intellectual Disabilities or Autism (ID/A) is on the verge of collapse. Unless lawmakers act, tens of thousands of our most vulnerable neighbors could return to institutions, hospitals or nursing homes.

We need our lawmakers to agree that valuing and protecting people with intellectual disabilities is the right thing to do.

For several decades, Pennsylvania has been moving steadily to a community-based model because people with intellectual disabilities have the right to be at home in their communities with family and friends. These individuals deserve to have access to a high-quality life where they are safe and where they benefit from and contribute to a community’s fabric of life. We know that we can provide the services needed to support these individuals, in community homes, day programs or workplace settings or in their own homes.

Right now, however, due to chronic underfunding and the impacts of the COVID-19 pandemic, Pennsylvania is failing these individuals. The system is teetering. Already, these individuals are paying a high price. Our organization has two group homes, one in Mechanicsburg and one in Harrisburg, which are vacant because we cannot hire and retain the staff necessary to operate these homes. It is heartbreaking and infuriating at the same time to think that six lives could be immeasurably improved if we had the necessary resources.

Our experience is not unique. Provider organizations across the state have been forced to institute cuts to every service offered. This includes transportation services, employment support, day programs, vocational training, and in-home and community support. Providers are unable to support individuals who are coming off an emergency waiting list.

The bulk of all these service cuts and reductions are due to chronic staffing shortages that were dire prior to the pandemic and now have escalated to a crisis. Providers do not have the funds to attract and retain the essential frontline workers who provide care to these individuals. These Direct Support Professionals (DSPs) provide hands-on, lifesaving and lifting care. They are responsible for every aspect of a person’s life, from bathing to eating, getting dressed and critical healthcare services like administrating medications.

Scores of DSPs have continued to show up throughout the pandemic. They put their own health and safety at risk to care for COVID positive individuals. The simple fact is that wages do not measure up to the demands of this job and turnover has always been high. Today, the turnover rates are catastrophic. A statewide survey of providers found that the average vacancy rate for full-time positions is 20.6 % and 34.9% for part-time positions. The average turnover rate full-time DSPs is 51.4% and 78% for part time DSPs.

Providers cannot simply raise wages because those are bound by the Medicaid reimbursement rates, which are established by the state. These rates have not been increased in five years.

Our costs increase, but we are not a business that can raise prices. And we should not be forced to reduce or eliminate lifesaving services. Our sole source of funding is the state, but our state government chooses to underfund a system that provides support to defenseless people. People in power are well aware of the problems we are facing and have repeatedly chosen to prioritize other issues over ours. This inaction only harms the vulnerable population we serve.

We are asking our legislators for $540 million dollars from the $7 billion that our state received in federal Covid-19 relief funds in the American Rescue Plan. This will provide short term relief that can help providers recruit and retain our essential workforce. In Long-term we need a permanent rate increase that will allow providers to raise the wages of our DSPs.

The money is there. It is time for our legislature to act.

— Anne Couldridge is the executive director for The Arc of Cumberland & Perry Counties.