Double Jeopardy for Children with Disabilities
This blog is part of a series to highlight the dangers of the repealing the Affordable Care Act. Multiple times a week, Community Catalyst will highlight a different constituency to draw attention to the benefits the ACA has afforded them and to outline what a loss of coverage would mean.
Last week, Senate Republicans held hearings for Rep. Tom Price and Betsy DeVos, who respectively have been nominated to lead the U.S. Department of Health and Human Services and the U.S. Department of Education. For those of us who care about access to high-quality health care and education, each nominee has made many concerning statements. However, if we are thinking about the impact of these two departments on America’s kids, the views of the two nominees have the potential to do unique harm, in particular to children with disabilities and their families.
First, let’s start with health care. Congressional Republicans are working hard to repeal the Affordable Care Act, although they are encountering resistance nationwide and substantial skepticism from many senators and governors from their own party. Rep. Price, the nominee for HHS Secretary, is fully on board with repealing the law. One of the provisions at risk of being repealed is the essential health benefits (EHB) requirement. The essential health benefits (EHB) package creates a required floor of benefits for all consumers—including children with disabilities—and set a new federal standard to ensure that all consumers have access to needed services to be healthy.
One important benefit for many children with autism, for example, is habilitative services. According to current regulation, habilitiative care is defined as “services and devices that help a person keep, learn, or improve skills and functioning for daily living. Examples include therapy for a child who is not walking or talking at the expected age. These services may include physical and occupational therapy, speech-language pathology and other services for people with disabilities in a variety of inpatient and/or outpatient settings.” Repealing the ACA means denying children with disabilities access to these important services.
It may surprise you how many children have periods of time in their development when they need these services—and then may no longer rely on them. Think about whether a child meets specific milestones around speech, walking, talking or has difficulty with their environment—sometimes termed as “sensory issues” or “being on the spectrum.” These children need access to supports that will give them the tools that they need to succeed at school and in their communities. Access to these types of services at the right time can significantly improve both their health and education outcomes.
For kids, health and education are closely linked. A healthy child is better able to stay focused in school and participate fully in their education. Moreover, research shows that kids with coverage through Medicaid or CHIP, a program that covers over 43 percent children with special health care needs, are more likely to succeed in school and go on to higher education.
So this brings us to Betsy DeVos. Ms. DeVos is a wealthy philanthropist and advocate for school vouchers. She has no training or background in education generally or with public schools specifically—facts that became clear during her hearing to become the U.S. Secretary of Education. Most alarming was her lack of knowledge of a key federal educational reform, the Individuals with Disabilities Education Act (IDEA, 1975).
Because of IDEA, children of all abilities are included in public school classrooms; they are promised in accordance with federal law, a “free appropriate education.” Children are provided needed services and support to attend and thrive in public school settings—through individual education plans, many children also rely on health services inside schools to support their inclusion. This is key for children with disabilities who may rely on a range of services – anything from speech and occupational therapy to having an aide in a classroom to support their learning and daily needs. Ms. DeVos’ lack of understanding of IDEA and lack of support for a federal role in ensuring that the civil rights of children are protected, is an alarming signal to parents across the country who rely on these services and the law so that their children can grow up included in their communities and have healthier, more productive lives.
As we face a future that could hold the repeal of the ACA and the emergence of a Department of Education that does not stand up for the civil rights of children with disabilities, I am acutely aware of the lose-lose situation for kids and their families. As a parent with a child who relies on both school and health services to support healthy growth and development, I am baffled and dismayed at the thought of an America that could take a giant step backward in the areas of health and education, harming some of the most vulnerable among us.