This Land is Made For My Son with Down Syndrome, Too

The Fourth of July is a time of reflection of our nation’s past and present. As a special needs mom and former history teacher, I often marvel at how far our nation has come in one generation as it relate to the human rights of individuals with disabilities.

Surely, when Thomas Jefferson wrote we have the right to “life, liberty and pursuit of happiness” in the Declaration of Independence he wasn’t thinking of people like my son, Troy, who has Down syndrome. Still, this document and our nation’s constitution has been used as proof that my son deserves a life of choice and self-determination with needed supports.

When I was born in 1982, individuals with Down syndrome had a life expectancy of 25-years-old. Many still lived in neglected and abusive institutions, were denied life saving surgeries, and underwent forced sterilizations as approved by the Supreme Court in 1927.

One generation later, in 2012, when my son, Troy, was born life expectancy more than doubled to 60-years-old. Many laws contributed to this amazing feat, and one of the most important was Medicaid. The social program was a bipartisan solution to healthcare for the poor, and was signed into law by President Lyndon Johnson in 1965.

In 1981, Ronald Reagan approved the Community and Home Based Waiver Provision within Medicaid. The waivers are rooted in the idea that individuals with disabilities are happier, safer, and more free in their home and community. Not to mention, it’s a cheaper alternative to institutionalizing individuals with disabilities.

The healthcare proposal that recently passed the House of Representatives and is currently in the Senate would cut Medicaid by $834 billion dollars over the next decade. Half of those cuts would come from “per capita based caps.” This means, instead of a federal and state partnership, the federal government would cap the amount of money they give to states to a fixed amount. Cash strapped states would likely cut Community and Home Based programs first.

Troy playing baseball with his typical peers

In a time of growing distrust of government, you need to know that the federal government has made a huge positive impact on the lives of our nation’s most vulnerable citizens. My son is proof of this progress. At almost 5-years-old, Troy, can do everything his neuro-typical twin brother can do. He’s potty trained just like his typical twin, can read and sound out simple sentences like most kids his age, and plays on the same tee ball team as his typical peers.

What you may not realize is the supports he receives during early intervention and in his inclusive preschool (like PT, OT, and speech) are partially funded through Medicaid. When my son reaches adulthood Medicaid provides job training, transportation, and independent living supports through local and state run programs like Project Search. At birth we put our son on Ohio’s Medicaid waiver waitlist for these adult supports and services. As Medicaid stands right now, that waitlist is 18-25 years long. What will happen if these cuts are approved? Likely we’ll never see the end of the waitlist; if we do, the services will likely not be what they are today.

Ohio Governor John Kasich opposes the Senate bill and in a letter with three other GOP governors stated: “It calls into question coverage for the vulnerable and fails to provide the necessary resources to ensure that no one is left out, while shifting significant costs to the states.” Over 700,000 Ohioans would be impacted by Medicaid cuts if approved.

Troy and I met with Senator Rob Portman’s staff in June. We shared our Medicaid story, but staffers gave us no indication of how Senator Portman felt about the disability community. After the Senate delayed the bill, Senator Portman came out in opposition to it, citing the opioid crisis here in Ohio. For sure, drug treatment and mental health will also be negatively impacted, but the disability community must not be ignored. Call Senator Portman or your own Senators today at (202) 224-3121 , remind them how far we’ve come as a nation in the treatment of our most vunerable citizens. Tell them to save Medicaid, and vote NO to any cuts or caps on the program.

June 20, 2017June 21, 2017

We Meet with Senator Portman’s Office In Last Effort to Save Medicaid

Disability advocates share our Medicaid story with Senator Portman’s staff member, Robert Braggs (far left)

My son, Troy, and I met with Ohio Senator Rob Portman’s office to share our Medicaid story. We joined five other parents and their children who have a disability.

We met with a staff member, because Senator Portman (R) had just flown out of Cincinnati the day before to attend a Republican caucus luncheon to talk about the American Health Care Act. The bill will repeal Obamacare and cut more than $800 billion from Medicaid.

The Senate version of the bill has been shrouded in secrecy. My disability advocate friends who work on Capitol Hill told me that the public will likely not see the contents of the bill until right before it’s brought up for a vote, before July 4th.

It passed in the House along party lines, although my Representative Mike Turner (R-Dayton) voted against the House version. Congress wants to pass the healthcare repeal bill fast for two reasons: Republicans campaigned on repealing Obamacare and many want to move on to President Trump’s tax reform bill.

Unfortunately, this hastily drafted bill will be devastating for the disability community.

Troy and I on our way to Senator Rob Portman’s office

The $800 billion in Medicaid cuts goes further than rolling back Obamacare Medicaid expansion. The “per capita based caps” would completely restructure how Medicaid is funded, leaving cash-strapped states to pick up the tab.

Troy and other individuals with Down syndrome rely heavily on community and home based services under Medicaid for early intervention, school related therapies, transportation to work, job training, and independent living supports to name a few. Per capita based caps would force states to end these optional community and home based services, because they would have to use what money’s left for acute health care.

Our meeting with Senator Portman’s office is an important one, because the Republican from Ohio is on the committee drafting the Senate version of the AHCA bill. He’s also considered a potential flip vote.

In a statement regarding the bill Portman said “I’ve already made clear that I don’t support the House bill as currently constructed because I continue to have concerns that this bill does not do enough to protect Ohio’s Medicaid expansion population.”

But he also submitted a proposal supporting cuts to Medicaid expansion that are slowly phase out over seven years, instead of three years under the AHCA House version of the bill.

Ohio’s Governor, John Kasich (R), is also concerned about the AHCA bill and it’s impact on Medicaid. Here’s part of a letter to Congress that he penned along with 5 other Governors: “Unfortunately, H.R. 1628 calls into question coverage for the vulnerable and fails to provide the necessary resources to ensure that no one is left out, while shifting significant costs to the states.”

Troy deserves a self-determined life of choice, but he’ll need support to get there. Troy doesn’t need a hand out, but a hand up.

Senator Portman’s staff member, Robert Braggs, was very kind to listen to our stories. He told us he would pass along our concerns to the Senator, but there was no clear indication as to how he might vote. Braggs did not indulge any of the Senator’s thoughts on the bill. To those in the room and across America, the bill is still an unknown.

It’s so frustrating to have your child’s future in the hands of those who don’t understand the struggles special needs parents face. We rely on a village of support, and we don’t take for granted the power government has over our children’s fate.

Ronald Reagan began the Medicaid waiver system for children with disabilities when I was born a generation ago. In that time life expectancy has more than doubled for individuals with Down syndrome, from 25-years-old to 60. That’s not coincidental. Government can and has improved the lives of our nation’s more vulnerable. We can’t go back!

May 24, 2017May 24, 2017

Call To Action: A Nation Is Judged By How It Treats Its Most Vulnerable

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!

Contact your U.S. Senator Here