State officials must work to avert collapse of intellectual disability/autism system

Families, adults with intellectual disabilities and autism, organizations that provide services, and disability advocates are witnessing the collapse of Pennsylvania's intellectual disability and autism (ID/A) system. Day programs have closed or scaled back services, at least 6,500 people have lost services in the past 18 months, and families are facing unemployment and financial ruin to stay home and care for adults with disabilities. The reason is clear: the payment rates set by the Department of Human Services have not kept pace with the cost of providing home and community-based services (HCBS), so provider organizations are unable to recruit, hire and retain Direct Support Professionals (DSPs) to work in these programs.

Members of the Pennsylvania General Assembly and Governor Wolf must work together to stop the collapse of the ID/A system that supports some of our most vulnerable families.

For the first time in my decades of family advocacy I am fielding distraught calls from families of people with intellectual disabilities who, after desperately waiting for years on the Office of Developmental Program's (ODP) waiting list, are now reporting that programs have no staff available to provide services for their loved ones. And as of Aug. 31, ODP reported that there are an additional 12,287 people with intellectual disabilities waiting for services and that 5,128 people have an emergency need for residential and day services.

Some of the most distressing calls come from elderly parents who are facing aging and medical issues and caring for adult children decades after most children leave the family home. They wake up each day hoping that today will not be their last and praying that a provider organization will offer the long-term services for their sons or daughters so they can die at peace.

Over the last 40 years, I have witnessed the Commonwealth of Pennsylvania move from a state that historically placed children and adults with disabilities in segregated wards of state institutions to a state that created innovative and inclusive community services. State institutions in PA once housed over 13,000 people in isolated state centers (currently about 600 people are still residents of PA's state centers), but due to the leadership of both Republican and Democratic Governors like Richard Thornburgh, Bob Casey, Ed Rendell, Tom Ridge, Tom Corbett, and Tom Wolf, as well as supportive Members of the Pennsylvania General Assembly, thousands of people with intellectual disabilities and autism left state institutions to lead more productive and fulfilled lives in their local communities.

The creation of community supports and services was a godsend for families like mine and so many others allowing our adult children to go to school, be employed, volunteer, worship and enjoy living in our communities alongside people who do not have disabilities.

However, the ID/A system's DSP crisis has now evolved into an implosion due to the outdated funding formula and woefully inadequate payment rates. Provider organizations can no longer provide services with 23% staff vacancy and 38% turnover rates. It is also just plain wrong that highly trained, dedicated DSPs must rely on food banks, sign their children up for the Children's Health Insurance Program (CHIP), and continually work multiple shifts or jobs to provide for their families.

It is also unconscionable that the state pays its own state center DSPs 30% more than DSPs who work in community programs and have more responsibilities than the state center DSPs.

The Provider Alliance, a state-wide provider organization, has submitted a plan to the General Assembly and the Governor that calls upon the state to provide "Equal Pay for Equal Work", to increase the funding and wages for DSPs equal to what the state pays its own employees at state centers. There is dedicated funding provided by the American Rescue Plan to help avoid this collapse, but the General Assembly and the Wolf Administration must put partisan differences aside for some of Pennsylvania's most vulnerable families. We also need Pennsylvania's Congressional delegation to vote for the $400 billion for HBCS in the Better Care Better Jobs Act.

If ever there was a time that requires Republicans and Democrats, members of the General Assembly, Congress and Governor's Office to work together, it is now. No one government leader can solve this impending system collapse alone.

Nancy Murray, M.S. is the President of The Arc of Greater Pittsburgh and Senior Vice President of Achieva. She and her husband have adult children with disabilities. She has over 40 years of experience in the disability field in the areas of public policy, advocacy, family support, supports coordination, health care and state government serving people with disabilities and their families.