Medicaid, block grants and what’s on the minds of special needs parents

If you’re feeling like me, keeping up with the news cycle right now can seems dizzying—there have been so many different issues to follow since President Donald Trump has taken office in January.

I’ve always been a civic-minded and politically engaged person, but now more than ever, I’ve made time to both follow the news and call my representatives to express my concerns.

As a parent raising a son with a disability—both autism and an intellectual disability—paying attention to public policy on disability issues is personal and essential. My son is 14-years-old and that means that in 7 more years, he’ll transition from his educational and therapeutic needs being served through the public school system to relying on Medicaid to fund his therapeutic supports, including job coaching, so that he can work at least part-time in a community setting and also housing.

During President Trump’s first week in office, the newly elected Republican Congress and the President introduced a bill to transform Medicaid to ‘block grants” as part of the proposed Republican health care bill. These proposals will slash the minimal benefits provided to people with disabilities. In Pennsylvania, school districts are able to bill Medicaid for the essential services that students need, including speech and occupational therapy and behavioral supports. Experts predict that transforming Medicaid to block grants—which has been tried in some states like Texas with dire results for people with disabilities—means that people with disabilities, both in the school system and for adults living with supports in the community, would mean a loss of essential services.

This issue has not been given a lot of media coverage in comparison to other issues—but it affects millions of people. Roughly 1 in 5 or 20% of Americans are living with a disability.

What’s At Stake

My husband and I are trying to wrap our minds around what the passing of this bill could mean for our son’s life—all of our plans for his future have included the funding that has been available for people with lifelong disabilities. We know many parents who have adult children with disabilities who, like our son, will require supports and care for the rest of his life. Even for families who are considered upper middle or upper class, the expenses of caring for a child who requires 24-hour care—and in many cases ongoing medical support—is simply not possible without Medicaid.

I’ve been talking with a lot of families like mine—and wanted to share some of their stories so that you can begin to understand what’s at stake for us.

“I have three siblings who can not live independently. I don’t know how our family will make it if we will not have any government support and funding and my husband and I are responsible to care for them, my aging parents and our children,” said one local mom who wished to remain anonymous.

“I have two children with Special Needs,” said another local mom, Ali Wilbur. “There are lots of services that the school will not provide which have been very beneficial for them. My primary insurance has caps on how much therapy they can receive. Medicaid has enabled us to receive more therapy and not have to pick and choose which therapy we get and which we have to scrap due to a tight budget.”

“I’m worried about our daughter losing the speech therapy she needs to be successful in her future,” said a mom from the area named Karen. “She has severe apraxia and thus far Medicaid assistance has helped her to transform from a non verbal to a speaking child.”

How We’re Feeling

Every family has its own story of concern. As you can gather from reading about just a few families, parents like me who are raising kids with special needs are feeling an increased amount of worry, fear and stress. And our reality is that daily life already is full of that! It’s not easy for any parent to take care of a child’s ongoing medical and behavioral needs and stay on top of being an advocate for them—in addition to holding down other responsibilities.

Please know that this is how parents in your neighborhood, school community, house of worship—are feeling. Please reach out and show that you are standing with us.One of my friends gathered 50 handwritten letters on this issue to send to Senator Toomey—when I am feeling alone in my discouragement, I remember that act and feel lifted up.

What You Can Do To Help

• Call your representatives today: Tell them not to cut and cap Mediciad. Tell them that as a concerned citizen, you want to make sure that people with disabilities have the supports that they need from Medicaid.

• Pay attention to this issue: Follow disability rights groups on social media such as Consortium For Citizens With Disabilities or The Arc.

• Let your friends know that you are there for them: As a mom raising a child with special needs, I often feel alone when my friends and family aren’t expressing concern or engaging politically about issues that affect my son and my family. Take action, be an ally and let us know that you are standing with us for the rights of our children.

Please share your personal stories in the comments below.