Kelley Shepherd: We are not the waste — a DSP's plea to protect Medicaid

Since 2008, I’ve worked as a direct support professional (DSP). In this work, I’ve witnessed miracles — small ones, daily — that show what people with intellectual and developmental disabilities and autism (ID/A) can achieve when they’re given a fair chance and real support.

I remember someone with a traumatic brain injury who used a familiar song to remember my name. Another person who, after weeks of silence, finally began calling me her “sister.” These may sound like small moments, but they are not. They’re signs of connection, of progress, of dignity.

That’s why the proposal to cut $880 billion from Medicaid is more than a policy debate to me — it’s a direct threat to the people I love and support every single day.

The impact of such cuts would be devastating. The people I serve would lose the ability to choose their own community activities, attend events tailored to their interests, or pursue employment that lets them contribute and feel proud. They’d lose the structure that helps them grow, the trust they’ve built and the independence they’ve fought so hard to gain.

This is not an exaggeration. We already face long wait lists for housing and various supports. If people who only need part-time services are forced into full-time residential settings just to receive care, those wait lists will explode. Others will lose support altogether. Families — many aging or already stretched thin — will be left to figure it out on their own.

And what about those of us doing this work? DSPs are already underpaid and overworked. If Medicaid funds disappear, we won’t be able to afford to stay in these jobs. That means more turnover, more burnout and fewer trained, compassionate people sticking around long enough to make a difference. And in a job like this, where trust and consistency are everything, that’s a disaster.

Let’s be clear: Defunding these services will not eliminate waste. It will create it. It will waste lives — lives that are full of potential, growth and joy when given a chance. The programs being threatened are not luxuries. They are lifelines. They are what make it possible for people with ID/A to live lives of meaning, purpose and community inclusion.

There are people in this country who’ve never been told “I’m proud of you.” I know because one man I supported told me that the very first time he ever heard those words was from me. His first time to the beach was when I took him to Keystone State Park. There are people who long for connection, for relationships, for love. And they depend on services funded through Medicaid to access those opportunities.

Please don’t slam the door shut on them. Or on us. We’ve fought too hard, through decades of advocacy and progress, to open that door. We need more compassion in our policymaking — not less.

To my elected officials in Pennsylvania, especially Sens. Dave McCormick and John Fetterman and Pennsylvania’s members of the U.S. House of Representatives: If you vote to cut these funds, you are voting to take away hope. You are voting to make people invisible again.

I am asking — no, pleading — that you don’t.

Kelley Shepherd is a direct support professional for Mainstay Life Services, Pennsylvania.