Bryan with roommate Glenn at Longwood Gardens.

Two weeks ago our local newspaper’s headline editorial piece read : “Pa.’s most vulnerable need our help”. It featured some stories of families across Pennsylvania who we would deem “in crisis” due to chronic underfunding of state-contracted non-profit organizations that provide much needed support to those who cannot advocate for themselves – people with intellectual disabilities and/or autism. Direct Support Professionals, or DSPs, are vastly underpaid, yet these individuals are the lifeline for our kids. The newspaper quoted the average salary for these critical care folks as $14.38/hour. I have heard a more generous average of $15/ hour. Nevertheless, they are grossly underpaid for all that they do to ensure a quality life for special needs clients. They do things such as administer medications, build behavioral support plans, manage mental health crises, must be current on CPR and first aid certifications, help with nutrition and daily life lessons, and stay on top of the tons of paperwork required of the state in order that these clients can receive critical services. A person could make much more in salary working in a fast food restaurant. And for a lot less stress.

This underfunding has been a perineal problem, but the Covid 19 pandemic just made things all the worse. In a recent phone interview with Christine Martin, President and Executive Director of Shared Support South, (the wonderful organization which provides services enabling Bryan to live with his roommate, Glenn, in an apartment in Doylestown) I found that these dire facts presented by the paper were corroborated. She summarized the crisis as twofold : 1. The salary rate paid to DSPs is not competitive with other professions because it is so low. 2. Not enough funding is being allocated for Consolidated Waiver funding. There is quite a waiting list of people waiting to get their loved ones into the waiver system in order to receive critical services. I have heard from other parents of special needs children that they have been waiting years to get waiver money and be able to enjoy the freedoms that Bryan enjoys.

Ms. Martin states that “Covid was a tipping point for a system that was already struggling to get through each day. Family members lost everything.” The DSPs who were in place helping clients with their daily lives were scared of getting Covid. Many did. And, so, for many families there was no homebased staff to help them with their child. The isolation was palpable. Some parents had to quit their jobs in order to take care of their kids at home. Support for them was lost. And then there is always the worry as to who will be the next person hired (when this crisis ends) to live and work intimately with their child.

What can be done? Write to the governor and your state legislators. They are currently in the process of voting on the budget. Legislators react much more to personal stories of what your family has gone through. Ask for them to increase funding. The federal government funding is what drives the consolidated waiver money and they, then, allocate this money to each state. Pennsylvania sets the rates and THEY decide how much to pay providers. This has a trickle-down effect to the salaries of DSPs who should, at this point, be getting hazard pay as well as a handsome increase in salary with what they have been going through these past two year.

So, I implore you to do your part to ensure that people like Bryan can continue or START to get quality care from quality individuals. Yes, there are many kind and caring DSPs out there who do their job for the love of the people they serve and out of a sense of duty to better our world. But, wouldn’t it be wonderful if they could be paid according to the most valuable service they provide?

On behalf of the agencies, families, clients and DSPs, we thank you for your advocacy at this critical time.

2 thoughts on “Advocacy

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