With contributions from Rebecca Cokley, Director, Disability Justice Initiative

Public health insurance programs are vast policies with many differences from state to state. It can be difficult to understand the effects of potential changes and why they are so critical for families. One group that is especially affected by changes to SCHIP and Medicaid are families with children or parents who have disabilities. While funders often work in issue area siloes, people’s everyday lives and the impact of policies on them do not. Let’s talk about the overlap between disability supports, public health insurance programs, and more.

I think it’s important to back up even further and make clear that when you’re a person with a disability or a parent of a child with a disability, all “life changes” are evaluated in terms of the ramifications for healthcare. I know people who have turned down six figure jobs because they wouldn’t be able to get the hours of home and community based services that they would need, families who moved far away from their loved ones to be close to a specialist or a specialty hospital, college choices made based not on academic merit or even the financial aid package, but whether or not the student can access the services they need in a particular state. Medicaid and CHIP cover about half of children with disabilities.

Most of the children on Medicaid live in low or middle income households, because the program itself has income limits. Medicaid has been proven to lift families out of poverty, and has an even bigger impact on families of color. For families with disabled parents, Medicaid expansion has actually resulted in an increase in the employment rate of people with disabilities (which is historically low). Medicaid is largely seen as one of the most successful programs at alleviating poverty, because when folks have healthcare, they tend to be more able to focus on other things, such as going to school, working (if they are able), or being a parent.

Since Medicaid can pay for services outside the home, this can include transportation, speech and language therapy, and mental health counseling. Some of these services can be provided during the school day. Roughly $4 billion dollars of Medicaid’s budget of roughly $400 billion is spent in schools, according to the Center for Budget and Policy Priorities. These programs are vital to not only a child’s success in school, but in life.

Currently there is significant concern that the guidance recently issued by the Trump administration will lead to states who want to expand Medicaid doing so via block grants and possibly also adding caps on individual care. This means that states will have increased discretion over what they will or won’t cover and can create limits to how much they will cover for an individual. For some children with disabilities, they may hit their lifetime cap within a year or less of care, depending on the severity of their disability. Additionally, we are seeing strong support by this administration for adding work requirements to Medicaid and other means-tested programs. This could force people who receive Medicaid and have conditions that are seen as “in flux” such as chronic illness, mental illness, or severe eating disorders to have to maintain a full time job to be able to access Medicaid.

I think the biggest thing funders can do is continue to monitor these issues and really force themselves to expand the notion of who their dollars are serving. If I had a dollar for every time I’ve heard a funder say “we support poverty issues but not disability” I’d have my own foundation. You cannot successfully work on poverty and not be inclusive of people with disabilities and their families. The disability community is a significant part of every marginalized community so disability and chronic illness priorities must be included in every attempt to remediate injustice and inequality. To stay connected, I would suggest monitoring the ongoing attacks on programs like SNAP, Medicaid, and Social Security. People are genuinely being hurt by cuts or restrictions to programs that alleviate poverty and funders need to use their voice and their privilege to support the resistance.