Self-Advocate Makes Compelling Case for Increased Funding for DSPs

Penn-Mar team members, families and self-advocates were out in force this past May, meeting with legislators in Harrisburg and co-hosting a Legislative Roundtable with Pennsylvania Advocacy and Resources for Autism and Intellectual Disability (PAR), the largest and most active association of intellectual disability and autism service providers in Pennsylvania, to advocate for increased Direct Support Professional (DSP) wages and to educate lawmakers about disability services and the impact of government policies.

According to all who were present for these events, no one in the group was more passionate or captivating than Tyler Mudd, a person Penn-Mar supports who participates in its Day Learning programming and lives in a Penn-Mar home in Stewartstown, PA.

Prior to joining the May 3 PAR-led gathering at the Capitol in Harrisburg, the Penn-Mar Advocacy Collective (PMAC), which is the organization’s grassroots advocacy group, brought 40 self-advocates, families, and team members to meet with different legislators to share their concerns about current Pennsylvania government funding.

At one of those meetings, Tyler wasted no time expressing his views to Christina Kauffman, Central Pennsylvania Regional Director for Senator John Fetterman. He spoke eloquently about the DSP workforce crisis and how it was personally affecting his life and the lives of the people Penn-Mar supports.

“It was pretty nerve wracking,” admitted Tyler. “Before I spoke with Christina I was worried about what they would think about the opinion of a person living off tax dollars.”

But he ended up making quite an impression.

Tyler having a word with Christine Kaufman in Senator Fetterman’s office.

“Tyler made a very positive impression on Senator Fetterman’s office when we met for ID/A Day in Harrisburg in May,” said Kauffman. “Through his earnest communication about his life and the struggles he and others face, Tyler is an effective advocate for himself and his friends.”

Tina Chan Sweenie, Associate Director of Development, who leads PMAC alongside a small committee of passionate volunteers, agreed. “Tyler was wonderful. He really ran the show,” she said. “It was so meaningful to have a self-advocate passionately connecting policies and decisions being made in Harrisburg to his everyday life. He is very knowledgeable about the issues and their impact on people with disabilities.”

Tyler recounted the role of the DSPs who supported him in both the Day Learning Center and his home. He pointed out that “DSPs don’t exactly get a living wage unless they work a lot of overtime.  They could be making a lot more somewhere else but they have such passion for the work they do.”

To illustrate his point, he compared the $17.50/hour wages for an inexperienced checkout person at the local convenience store to those of a nursing assistant in a hospital, both of whom earn more than most DSPs, due to the government funding provided for their wages.

While some organizations, like Penn-Mar, are able to supplement those funds to provide higher wages, and offer Career Ladders programming that comes with increased wages and bonuses, this is not the case for most human service organizations.

DSPs, said Tyler, require specialty training for dispensing medications and working with feeding tubes and perform many nursing-related tasks. Tyler went down the list of other DSP responsibilities including coordinating schedules, providing transportation, being available for emotional support and companionship and completing paperwork requirements.

He added that “it’s unfair” that he could get a job at a convenience store through Penn-Mar’s customized employment program and make more than the DSPs who support him.

He also addressed the challenges of high turnover among DSPs, something which plagues the field. “When things are constantly changing and new DSPs are assigned it can be very confusing,” said Tyler. “We don’t know who to come to for meds or whatever it is we need.” Tina confirmed the dilemma sharing that nation-wide, the DSP turnover rate is around 50%.

Tyler’s impassioned request for more funding was well received by Senator Fetterman’s representatives. They were grateful for the input and left the meeting saying, “they were in process of doing what they could.”

Tyler among the other attendees of the Legislative Roundtable.

At the PAR Legislative Roundtable on May 31^st, Tyler’s opinions as a self-advocate opened up the session. “He recounted the same issues and concerns expressed in Harrisburg,” said Maria Engler, a former DSP who is currently a Day Program Coordinator. “All of the legislators in the Roundtable were very agreeable and felt that it was important to find the funds to support places like Penn-Mar. However, they cautioned that the state is running at a deficit and the money may not be there.”

Commenting on the session, Nick Kratz, Government Relations Manager, Pennsylvania Advocacy and Resources for Autism and Intellectual Disability (PAR), noted, “I’ve seen firsthand the strength and impact of Tyler’s advocacy, when he joined PAR at a legislative roundtable. He knew what he wanted to say, and his personal story left an impression on all the legislators who attended. I’m encouraged by his willingness to stand up and speak up for his needs.”

Hon. Mike Jones, State Representative, 93^rd District, who participated in the Roundtable, wrote to say, “I recently attended an informational meeting a Penn-Mar where I had the privilege to meet and learn from Tyler.  What an incredible young man!  Not only is he a beneficiary of Penn-Mar’s invaluable services but he is a tremendous asset to the organization and advocate for its clients and staff.”

Relentless advocacy efforts by Penn-Mar, PAR, and other human services providers, contributed to the House of Representatives vote to include $50 million in funding for the recruitment and retention of DSPs in the budget bills that typically accompany the budget each year.

While there is no guarantee this will pass the Senate and be signed into law, should it remain in the budget, it will provide an immediate $50 million for the current fiscal year.