Commentary

We’re the Pa. moms of disabled kids. We have some questions for Gov. Wolf | Opinion

We are exhausted and we need your help

Pennsylvania Gov. Tom Wolf speaks with the press. (Commonwealth Media Services photo)

By Nancy Murray

As the mother of three adult children with intellectual disabilities, I’ve spent decades advocating for children and adults with intellectual disabilities and autism (ID/A) and their families.

I am deeply proud of the Commonwealth of Pennsylvania for moving from placing children and adults with disabilities in segregated wards of state centers to a more compassionate and inclusive community-based system.

But today, the ID/A system is facing its greatest crisis in more than 60 years.

Repeated underfunding has resulted in community disability programs being unable to recruit a workforce of direct support professionals (DSPs) to support people with disabilities in their homes, at their jobs, and in their communities.  This underfunding has resulted in the highest staff vacancy and turnover rates in history.

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Parents of children and adults with disabilities become advocates the day their children are born and continue to advocate and care for them for decades.

But we are exhausted and need help. Across Pennsylvania, families cannot find DSPs to help them care for their family members with disabilities.

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Mothers who fight for the rights of their  children with disabilities have more wear and tear on their souls than one should in a lifetime, so on behalf of them and our children I’d like to ask Governor Wolf the following questions.

  1. Governor Wolf, what is your plan to stop the collapse of the community ID/A system? Our DSPs are leaving to take jobs in other places because the payment rates your administration set many years ago have not kept pace with inflation and do not allow disability organizations to pay DSPs what Walmart, Amazon, and other businesses pay.
  2. Governor Wolf, how will PA maintain the health and safety of people with ID/A with the system collapsing? Parents of children with ID/A who care for them at home save the Commonwealth billions of dollars every year. The ID/A system is our safety net. We are extremely worried about what will happen to our children if the system collapses.  
  3. Governor Wolf, why is it OK to use the same federal Medicaid funds to pay your state DSP employees 30% more than DSPs performing the same work in community programs? Why don’t you support the cherished American principle of Equal Pay for Equal Work?
  4. Governor Wolf, do you understand that DSPs are not teenagers starting their first job at age 16? Your administration put in place a state regulation that is supposed to set fee schedule rates that will pay fair wages for DSPs who provide necessary, life-sustaining services for people with disabilities. However, recommendations from your Administration propose paying DSPs the same as teenagers working their first job. You are a successful businessperson. I know you understand these are different jobs requiring different skills and different wages.
  5. Governor Wolf, do you know what a DSP does? As the title implies, DSPs are professionals who have very challenging jobs. They administer medications, develop and implement positive behavior support plans, and manage mental health crises and emergency medical situations. DSPs also need to maintain households, prepare specific diet-required meals, provide accessible transportation, record data for federal and state regulators, and know how to safely use crisis prevention, intervention, and resolution techniques.
  6. Governor Wolf, will you meet with people with disabilities and family members before you present your February budget address to the PA General Assembly? If you meet face to face with people with disabilities and families, you will better understand the impact this crisis is having on us and you will take action to fund the intellectual disability system with the $541 million that is needed to stop its collapse. Your administration’s current rate recommendation is $141 million short of what is needed. The state has the funds targeted for this purpose from the American Recovery Plan, thanks to Senator Bob Casey and increasing state revenues that are far exceeding projections. After five years of a rate freeze, the disability system we worked decades to build is collapsing in front of our eyes. But, it does not have to. With your leadership and the General Assembly working with you, it can be saved and strengthened.

Gov. Wolf, tens of thousands of families of people with intellectual disabilities and autism look forward to hearing answers to these questions.

Nancy Murray is the, president of The Arc of Greater Pittsburgh and senior vice president of Achieva. Murray has more than 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.

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