Advocates in Action: Making a Big Difference in the Lives of People with Disabilities - Penn-Mar

Advocates in Action: Making a Big Difference in the Lives of People with Disabilities

Posted on March 28, 2018

Penn-Mar families, friends, self-advocates and staff break for a group photo during their meetings with a dozen Maryland legislators in Annapolis on DD Day, February 22nd.

Pending Governor Larry Hogan’s signature to Maryland’s budget for fiscal year 2019, it is safe to say that the Old Line State’s advocates for people with intellectual and developmental disabilities (I/DD) have scored a big victory. On March 14th and 16th, the Maryland Senate and House Appropriations Committee respectively voted to restore the promised 3.5 percent rate increase for developmental disability community supports.

The 3.5 rate restoration is in no small part due to the efforts of Penn-Mar family members, self-advocates, and staff, and hundreds of other Maryland advocates, who on February 22nd, descended on Annapolis for DD Day – “Developmental Disabilities Day at the Legislature.”

Advocates in Action

As Jenn Hobbs, Penn-Mar’s Associate Director of Development, who helped organize Penn-Mar’s DD Day participation said, “This was an opportunity for Direct Support Professionals and the individuals they support to talk about how complex the role is and becoming more so as services are increasingly moving to community based settings. For self-advocates and families it was an opportunity to share what happens and how heart wrenching it is when a DSP they’ve come to trust and connect with leaves because they can’t afford to do the work anymore.”

The day, part of an ongoing grassroots movement, was sponsored and organized by the Maryland Association of Community Services and the Maryland Developmental Disabilities Coalition in order to effect policy change in Annapolis that would positively impact tens of thousands of Marylanders with I/DD, and more specifically the over 20,000 DSPs who support them. At issue was the full restoration of the 3.5 percent funding for community services, mandated by the Minimum Wage Act of 2014. Governor Hogan’s fiscal year 2019 budget, announced in January, allotted only a 1 percent rate increase, which would have endangered the stability of an already fragile direct support workforce that is beset by low wages and high turnover.

Closing the Gap

DSPs are the frontline staff and backbone of the care system who provide critical support to people with disabilities. They are not only caregivers, but teachers, advocates, companions, and friends. Even though direct support demands complex skills, independent thinking, ethical judgment and the ability to create long-term relationships of trust and mutual respect, DSPs have neither been seen as the cornerstone of a system of community services, nor are they compensated and otherwise supported on par with the importance of the work they do.

“The restoration of the 3.5 rate increase is a significant step forward in recognizing the crucial support DSPs provide to the more than 24,000 individuals with I/DD in Maryland,” said Greg Miller, Penn-Mar’s President and CEO. “I highly commend the work of our advocates, as well as our legislators who heard their many voices.”

Making a Difference

Nancy DiPaola and her late husband Joseph raised three sons in Parkville, Maryland. Her youngest, Michael, who was born with Down syndrome, was 17 when his father passed away 30 years ago, rendering Nancy Michael’s sole caregiver. That was until six years ago, when Michael, 48, independently decided that he was ready to branch out on his own, and move into a Penn-Mar residence.

Nancy feels blessed for the support that Michael has been receiving from Penn-Mar and its DSPs. As a parent who cared for a child with an intellectual disability into his middle age, she knows the great demands of the caregiver’s role and what it takes for DSPs to provide a safe, stable and nurturing environment, and a life of opportunities and inclusion.

“It’s a very demanding job, to say the least,” she said. “DSPs deserve to be fairly paid for it. With turnover being so high because of the low wages, and DSPs looking elsewhere for better opportunities, repeated changes in staff can be very disruptive. It affects the whole house.”

“We all need stability in our lives in order to thrive,” added Nancy “I’m so proud of what we’ve accomplished so far to bring about change for DSPs. They make such an enormous difference in the lives of people with disabilities every single day.”

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