It’s time to help those who help others live with dignity

My parents raised me to always pay attention to the people who needed a little help being heard. Often, those people were the ‘different’ kids, people with disabilities that make them go through life with extra challenges. This week, the people who are members of the Intellectual Disability/Autism (ID/A) community are paying attention to the people who need to be heard. They are raising their voices, not for themselves, but for the Direct Support Professionals (DSPs) who take care of them. In a role reversal, folks in wheelchairs, who live in constant need, are calling on me and my fellow legislators to provide DSPs with living wages and safe workplaces.

To be sure, this is not completely altruistic, but the ID/A community has recognized that if justice and fairness are to prevail, we need to take care of everyone in the care system for people with disabilities. #SuportMeSupportDSPS is their moto. Among the people who came to Harrisburg is Michael Anderson, an advocate from the ARC of Philadelphia. I first met Michael in my Bridesburg office, and I just saw him again, lobbying this week in Harrisburg for the fair treatment of the people who serve his community.

Michael is a forceful voice for people like him who need improved services. He knows all about the Community Living Waiver backlog that has left 10,000+ eligible and deserving individuals (and the families of those folks) to live in constant limbo. Michael knows that even before the COVID pandemic, DSP shortages due to abnormally low wages were the rule.

According to a 2019 multi-association study on the workforce, providers were experiencing a vacancy rate of 19% and a turnover rate of 32%. A report this year by CDI found a worsening workforce crisis for the 14,756 (FT) and 1,897 (PT) DSPs included in the survey that showed average turnover for DSPs is 56%; and the average vacancy rate for DSPs is 23%. These are the figures, even though 75% of the provider/employers leveraged temporary pandemic relief funds to provide higher wages. Many DSPs earn about $12/hr – less to care for human beings that an Amazon driver gets to take care of packages.

Staffing shortages continue to reach new all-time highs, and the ID/A community is desperate for intervention from the legislature and administration to provide immediate relief for providers. The DSP shortage not only causes burnout, continuing the ongoing crisis, but also negatively impacts the individuals supported and their families. The care for a person with disabilities is intensely personal, and the comfort level and relationship between the DSP and their patient/client is important. That relationship is thrown to the curb, every time a DSP has to move on to a different, better paying job. In most surveys, DSPs cite the low wages as the primary reason for leaving and most would remain if they could support their own families with one job. The reason for these low wages – Pennsylvania has not raised the Medicaid reimbursement rate – which sets what providers can afford to pay their workers – for 5 years.

An additional impact is on family members, who struggle with the unavailability of DSPs, and are devastated by the lack of support. I have had more than one frustrated constituent family, who simply need that extra little bit of support to have normal lives that are not dominated by their loved ones’ condition.  The Community Living Waiver program can provide such support, but it is woefully underfunded. In my office, my staff and I see people who are adults, capable of living independently with the support provided by the CLW, who are kept at home with their parents because the waiver program is hopelessly backlogged.

I am supporting budget proposals to get some of this needed relief. First, I support allocating $540M of the American Rescue Plan funds placed in a ‘rainy day’ fund in June to provide a one-time boost to Medicaid rate and, with it, DSP wages. I also am advocating to get people of the backlogged list. The price for getting 732 people of the list? It’s just $13M, a paltry sum in a $30B budget.

At the federal level, Senator Bob Casey has introduced legislation that would provide funds for state Medicaid programs to improve home- and community-based services), such as home health care, personal care, case management, and rehabilitative services.

In the end, it doesn’t take much to make sure the people who need our help most get that assistance. We should join both with the members of the ID/A community and the DSPs who take care of them to make sure everyone gets what they need.