Most people would agree my son, Troy, is amongst America’s most vulnerable citizens. Born with the most common chromosomal condition, Troy will always need some support to lead a successful, healthy life.
That’s why it’s so disheartening to hear that many in Congress and the President of the richest, most powerful country on Earth wants to gut a program that helps Troy and millions of other Americans lead healthy, more self-reliant lives.
President Trump’s new budget slashes $610 billion dollars from Medicaid over the next decade. The program currently provides healthcare for 1 in 5 Americans.
Tackling all that’s wrong with a proposal like this in one blog post is impossible. But here’s what I can do: share how it will impact us personally and ask you to take action.
Because here’s what many people don’t realize: Medicaid is not just healthcare for poor adults. Two-thirds of the program’s spending goes to the elderly and people with disabilities.
I can speak to the latter part of this population. When Troy was first born it wasn’t his health that concerned me most. We’re fortunate enough to receive excellent health coverage through the United States Armed Forces, and Troy is one of the healthiest kids I know.
Instead, I was worried about what would become of Troy. Would he ever drive a car, hold down a job, or live on his own? What happens when my husband and I pass on?
In the past 4 1/2 years, long-time disability advocates have shown me the promise of early intervention, school supports and therapies, as well as adult home and community based services. Their kids are living healthy, purposeful lives with the right support. For sure, there’s still big worries, but the disability rights movement has come a long way.
How naive I am to assume Troy would receive the same rights as those that came before him. How stupid of me to assume Congress and our President would choose to protect my son over their own interests. How silly of me to assume the march for disability rights would continue in forward motion without a fight.
Every single one of the services listed above is funded partially through Medicaid. States will be forced to cut these services first, because they will have to focus what little money is left on acute healthcare.
Right now, Troy receives speech, physical therapy, occupational therapy, and special bus services at school. 40% of America’s school children receive similar supports at school, and it’s all funded partially by Medicaid. Only 1 in 5 Medicaid dollars is spend on these school supports, which points to the effectiveness and efficiency of these services.
As an active duty military family, our hope is that we end up in a state that will at least raise taxes to pay for these lost federal dollars.
States will be forced into choosing two options:
- Per capita caps: states would receive a set amount of federal dollars for each beneficiary
- Block grants: a lump sum from the federal government
Both of these options strike fear into this momma’s heart, because the result is less home and community based services for my son depending on where we live.
I recently spoke to a fellow advocate who’s adult daughter with Down syndrome just got a full-time job. She told me she had to decide between working full-time and her daughter turning down the job offer, or quitting her full-time job so she could transport her daughter to and from work. Luckily, her daughter finally got off Ohio’s waitlist for these services, and she received transportation to work. Now they’re both working and paying taxes.
As of right now we’re on a state waitlist for transitional services. When Troy becomes an adult he will rely on home and community based services like transportation to work, job coaches, and independent living support aides to be a successful, productive citizen. But we’re military and will likely not end up in the state we’re in now; further complicating Troy’s adult transitional opportunities.
Future prospects for my son, as they stand right now, aren’t as good as they could be. Only 24% of people with cognitive disabilities are even employed. These cuts to Medicaid would take us back to the dark ages.
Already America’s 5 million children and young adults with disabilities rely on their families for daily in home care. A recent article put the cost to all of these families at 1.5 billion hours and $11.6 billion dollars a year–if you calculate all that work at minimum wage.
Special needs families are already saving the American taxpayers billions of dollars. A few generations ago, all the cost of care for children like Troy would be placed on the state, as most were institutionalized or worse.
In our household we live by the saying “freedom is not free.” My husband has served his country proudly for the past 15 years. He has seen combat, and we have buried too many friends. Our family is the living embodiment of the sacrifice needed to make this country great. We sacrifice so children like Troy can live to their greatest potential.
So here’s what you can do: Use the link below to email, call, or schedule an in-person meeting with your Republican Senator. They’re expected to take up this issue SOON! Tell them your personal story. If you don’t have one, feel free to tell them about Troy. We thank you for your advocacy!