Delayed But Not Done: Why We’re Fighting Against the Senate’s Bill

Jill McLaury is the Owner and Director of Bright Futures Learning Services, Inc. and a member of the MAP Board of Directors.

As the Senate chamber readies its health care bill, there are concerns that the bill would include devastating cuts to services that people with disabilities rely on.

I’m very concerned, for many reasons. Advocacy groups like the Mountaineer Autism Project are worried, too.

For one, we’re worried that rural states like West Virginia have more uninsured and underinsured people per capita than other non-rural areas. So we rely more heavily on Medicaid.

The House bill that the Senate is now re-working converted Medicaid to a per capita cap system. Under this plan, the federal government would annually offer a fixed amount of money for each Medicaid beneficiary.

Around 210,000 of West Virginia’s kids are currently insured by Medicaid. If one in 68 of these kids have autism, that’s 3088 kids.

Tell me—those of you will children with autism—how much do you think the government would allot for your child, and do you think it would be enough to cover the needed health care services they need in any given year?

Let me put this question into a bigger context.

I grew up in Wyoming County in the early 80s. I was a child with a learning disability, but I was lucky. My grandparents had resources. My parents weren’t too intimidated by the school system to advocate for my right to appropriate services.

This struggle had a lasting effect on me. I majored in special education at Marshall University. I went on to graduate school in behavior analysis at the University of North Texas. I came back to West Virginia as a Board Certified Behavior Analyst, determined to meet the unmet needs of the kids in the southern part of the state.

To do this, I had to start from the ground up— start my own business, train my own staff, etc. I started in my grandparent’s house, then to a one room church, to a shopping center, now to a newly constructed facility that will open this summer. A picture is attached.

But here’s the kicker: in order for me to provide life-changing therapy for children with autism in our state, my business must be paid, so that my staff can be paid. This payment comes from billing insurance.

Let’s all think back and remember the time when families with children with autism had NO options but pay for health care out-of-pocket, fearing for the next health care emergency that would threaten the vitality of the family.

That was huge. It was a big step in the right direction, and it’s one we’re going to fight for.

Kids came to us who couldn’t even speak a single word went on to finish kindergarten and first grade with their typically developing peers. Others who remained nonverbal learned how to communicate through assistive technology.

These kids are the amazing victories that make this fight worthwhile.

Aside from preserving essential health benefits that protect those with pre-existing conditions, we must protect business owners like me who rely on billing insurance to survive.

Although I currently can’t bill Medicaid specifically for ABA service, this program provides an array of in-home and waiver services that assist families of kids with autism.  For some families, these are the only services their children receive, these services are also what allows parents to work.

It’s an intricate web of needs, services, and challenges that we address when we struggle to provide care in West Virginia. Thanks to the Affordable Care Act, we were given the opportunity to begin building an infrastructure to address these issues. More services are provided, more providers are employed, and more kids receive much needed therapy.

But once you begin pulling a string on this web, well- it all unravels. Our small, fragile infrastructure is dismantled.

Repealing and replacing the Affordable Care Act with this Senate bill will surely do this.

If any of this concerns you—losing protections that keep kids insured, and cuts to the Medicaid program—you must, must contact your congressional delegation, particularly your Senators, and particularly Senator Capito.  With the Senate rushing their ACA repeal bill to a vote, we don’t have much time to convince them why these protections mean so much to our community.

Save the Date! The 2018 MAP Conference

Susannah Poe is the founder and director of the WVU CED’s Intensive Autism Service Delivery Clinic, and a member of MAP’s Executive Team.

We have already started planning for next year’s annual MAP conference! Mark your calendars for Friday, April 20, 2018, and come spend the day with other families and professionals interested in learning best practices for young children with autism at the beautiful Bridgeport Conference Center. Right off of I-79 between Fairmont and Clarksburg, the Conference Center is located in the Charles Point development and is home to many excellent restaurants and hotels.  We will offer the same mix of family-focused training as well as a BCBA/professional track, but hope to add more time for participant networking. We are also listening to feedback from this year’s meeting asking for sessions relevant to other treatment team roles, such as psychologists, OT’s and speech therapists. Be thinking about what topics you would like to have covered during this day long training, and we will send out a survey for your ideas and suggestions later in the fall.

This year we were fortunate to have professionals and family members representing all areas of WV, and our reviews were great!  More than 125 attended, and while we had a few technical problems with audio equipment, the day was a huge success. After our first conference, we have learned a little more about what you would like and how we can make the day run smoothly (have our own A/V professional traveling with us for all emergencies) and increasing the opportunities for social interaction. We can’t wait!

This conference is dedicated to providing education and information on evidence-based methods for families who have young children with autism, and to support the professionals who work with those families. Mountaineer Autism Project is a unified group of parents and professionals whose goal is to have one voice in the state dedicated to empowering parents, supporting best practices, providing accurate and up-to-date information, and making lasting changes in the state to enable West Virginia’s children with autism to achieve their highest potential. We provide advocacy, family support, and information resources.