The Social Safety Net Is Failing Special Needs Families
Photo: https://www.autismspeaks.org/
By Jon Hochschartner
Being the parent of an autistic and nonverbal child, who will likely require around-the-clock care for the rest of her life, can be an isolating experience. Very few people understand the unique challenges you face. So it was with some relief after we found out our daughter was autistic, that I discovered the YouTube channel Fathering Autism, which documents the life of Florida parents caring for their now-adult, nonverbal child.
One of their videos, however, in which they discussed what would happen to their daughter after they died, inspired a great deal of anxiety in me. The parents had met with a financial planner and determined that in order for their child to receive one-on-one care in a home setting — outside of a facility — for the remainder of her life, they would need six-to-nine million dollars. Of course, I had previously thought of what would happen to our daughter when we died, but to hear the amount necessary to achieve what didn’t seem like an unreasonable goal was overwhelming.
I’m a bit of a champagne socialist. My wife, for instance, runs a small preschool and employs a handful of people. Still, that monetary figure seemed impossibly out of reach. It was hard for me to even think about the number for a prolonged period without mentally shutting down. Given our relative privilege, I couldn’t even imagine how those less fortunate broached the subject. In my view, this shouldn’t be a problem for individual parents to solve, and represents a significant failure of our social-safety net.
As a member of the Democratic Socialists of America, I hope the organization will address the situation of families like ours more specifically, and, in turn, force the broader Democratic Party to do so as well, creating a large enough coalition to enact change. I am far from an expert on policy in this area, but, speaking from my own personal experience, I know there are a variety of laws that could help our family a great deal. I’d like to mention a couple of them.
Parents of special-needs children who require high-levels of support should be eligible for being paid by the government as caregivers. It’s effectively a full-time job and should be treated as such. For instance, sleep irregularities are very common for people like our daughter. It’s not unusual for one or both of us to be up all night with her. Similarly, my daughter is frequently sent home from school early, and without warning, because she’s melting down and harming herself or staff. Even with my wife working, it often takes both of us to make sure we have adequate and safe coverage for our other children.
Accessing our meager, existing social-safety net is a labrynthine, esoteric process, so much so it’s hard to avoid the conclusion the system was designed that way on purpose. In my understanding, some states allow parents of special-needs children to be paid as caregivers, but this is far from universal. For example, the Democratic-controlled state where we live, Connecticut, didn’t allow this until recently, and I haven’t figured out yet whether we qualify for the program. Again, it’s difficult for me to envision how families in less enviable financial circumstances, in other states, can make this work.
Paying parents of special-needs children who require full-time support would, among other things, help these mothers and fathers save money for their kids’ long-term care. Ultimately, though, expecting such parents to try and cobble together a small fortune to keep their children out of an institutional setting is deeply unfair and unrealistic. Most people with different abilities, who are capable of speech, prefer living in their homes to being forced into segregated, restrictive and frequently underfunded group facilities. Why should we assume those who can’t talk would want or should expect anything different?
“State investments in home- and community-based services often result in short-term spending increases, but over time lead to long-term cost savings and a reduction in institutional spending, according to research from Brandeis University’s Community Living Policy Center,” according to Anna Claire Vollers writing in Stateline. “The national shift to community-based services has been overwhelmingly popular. About 82% of people who receive community-based services prefer to live at home rather than in an institution, according to the most recent survey by the Medicaid and CHIP Payment and Access Commission.”
What the parents of the Fathering Autism YouTube channel want for their daughter is not unreasonable and should be freely available to everyone who needs it. My wife and I are comparatively well off and yet how we will pay for the long-term care of our child is a constant — and at times crushing — source of anxiety for me. It’s simply not something most parents are capable of planning for. A just society would care for its vulnerable members and not punish them for their inability to compete on the capitalist market.
(Hochschartner lives in Connecticut. More of his writings can be found on Substack.)
