A Mother’s Concern with the American Health Care Act

My son has Down syndrome. The GOP’s health-care bill scares me to death.

reprinted from The Washington Post, Op-Ed, 5-17-17

The American Health Care Act scares me. I’m scared for all Americans with disabilities. I’m scared for my family. And I’m particularly scared for my son, who has Down syndrome, because it would take away many of the supports he needs to live his life as a free and independent American citizen.

This month, Rep. Cathy McMorris Rodgers (R-Wash.) wrote an op-ed for The Post explaining why she voted for the AHCA. McMorris Rodgers and I have a lot in common. We both have young sons with Down syndrome, and we both are involved in policy issues affecting them — she as a member of Congress, where she is chair of the House Republican Conference, and me as an advocate for full inclusion of Americans with disabilities. I have worked with her and her office for several years on issues that will affect our boys. To be sure, she wants very much to improve services for people with disabilities.

Where we diverge is on the AHCA. She says it is a good policy for her son, but it scares me to death. Given the bill’s many other controversial provisions, few in Congress or the media talk much about how the AHCA would cut Medicaid by $839 billion over 10 years.

The bill proposes to place new per-capita caps on Medicaid funding, a structure that over time would have a huge impact on service providers and families. At first blush, this approach might seem reasonable, even fiscally responsible. But consider this scenario: One of my closest friends has a brother in his late 30s with Down syndrome. His life is the very life that I want someday for my own son. He works full time at a job he loves, lives independently, and participates in his local theater and synagogue. He has a long-term girlfriend and is a beloved member of his community. The Medicaid services that he receives support him in his independence. Those services help him to budget and pay bills, shop for groceries and cook, use transportation and succeed at his job. Because of Medicaid, he is a taxpayer, a consumer and a good neighbor.

Currently, those who qualify for Medicaid and a certain level of support can receive such services through a state home and community-based services program (HCBS). The alternative is a nursing home or institution — for decades, the only option for families like mine — which too often have been places of abuse, neglect and segregation.

Stripping almost a trillion dollars from Medicaid would decimate services such as those my friend’s brother receives. Without that money, people with disabilities will go without employment supports, durable medical equipment, personal care attendants, transportation and case-management services. More important, they will not have the liberty and independence they deserve.

How do I know that these services will be cut? Because, under Medicaid law, they are optional. Faced with such a huge funding reduction, states will face impossible decisions, and they can be expected to choose to cut anything not required — denying help to people who desperately need it.

For many Americans with disabilities, HCBS programs are not “optional.” They are a matter of life or death. People have fought for a generation to receive services in their homes rather than institutions. Without help, many will face a choice between going without and living in an institution. For those who rely on HCBS assistance to bathe, dress and eat, employment may no longer be possible. Their roles as taxpayers, and consumers, will cease, and they will become reliant on — substantially more expensive and isolating — government benefits for their survival.

HCBS services are not available outside of Medicaid. There is no private, market-based health insurance product to cover these services for my friend’s brother or, eventually, my son. Over a lifetime, those supports cost an estimated $2 million to $3 million, enough to bankrupt even affluent families.

So this is what scares me: that children with disabilities, who have such potential, will not have what they need to flourish in adulthood because a bill gutting today’s health-care supports becomes law. McMorris Rodgers and I dream of the same thing for our children — a happy, fulfilling life. If it passes, the American Health Care Act will make that virtually impossible.

by Allison Wohl, executive director of the Association of People Supporting Employment First, which advocates for employment and career opportunities for people with disabilities.