I witnessed a sleight-of-hand at the Kentucky Capitol on March 8. Under the pretense of concern for the “human rights” and “ethical and humane treatment” of fetuses with Down syndrome, Republican lawmakers headed down the path of determining that some reasons for seeking a legal abortion are legitimate, while other reasons are not.
In brief, House Bill 455 would prohibit an abortion if there is any test result, prenatal diagnosis or other reason to believe the fetus has Down syndrome.
As the parent of an adult with developmental disabilities, and as a long-time advocate for people with developmental disabilities, I am offended at this pretense. Either these lawmakers are ignorant of the complexity and challenges of parenting a child with special needs, or they are willfully deceptive.
Why else would they propose this bill, at the same time that these same legislators are supporting cuts to so many of the public benefits that people with Down syndrome and other disabilities rely on for their survival? Let’s look at some policies and bills that supporters of HB 455 are supporting.
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▪ Medicaid — Not only is Kentucky cutting benefits, it is also creating a reporting requirement for folks who might still qualify. This makes it more difficult for their families, who are often already stressed and fragile, to access the benefits to which they are entitled.
▪ Supports for Community Living, or SCL waiver — This is an essential resource that allows adults with disabilities to access community employment, volunteering and other activities by providing aides and job coaches and training on how to navigate the community. The wait-list for this resource is frozen at 2,000 people, and the agencies providing these services are struggling to remain viable because the reimbursement rates haven’t increased in 14 years.
▪ The Arc of Kentucky — The governor’s budget cuts all funding to the Arc, an essential organization that supports people with disabilities through advocacy, education, training and direct service programs.
▪ Public education — Since 2008, career and technical education (a primary track for students with disabilities) has been cut by 25 percent, and special needs services have been cut by 15 percent. The current budget does nothing to restore these cuts.
When I began to raise these points in my testimony at the Health and Family Services Committee meeting, the committee chair, Rep. Addia Wuchner, cut me off saying, “Speak to the bill.”
In other words, she challenged the relevance of discussing these budget cuts, in the context of the current bill.
My point was simple and I find it hard to believe she did not understand it: How is it “ethical and humane” to legislate such a wide and deep array of cuts, which will severely impede the ability of people with disabilities to live full lives?
Perhaps our legislators don’t understand this — or perhaps they don’t really care about “ethical and humane treatment” of these folks.
Perhaps they are using people with Down syndrome, and our sympathy for these people, as a trick to restrict women’s ability to access their legal right to safe abortion. Perhaps they even imagine that, if they can create a precedent that some reasons for seeking abortion are allowed and other reasons are not, that they can pave the way to prohibit more reasons in the future.
Successfully parenting a person with developmental and medical challenges, despite the overly simplistic portrayal of people with disabilities in these legislators’ videos, is incredibly complex and requires a lifetime of support and resources. Even the most privileged of us can’t do it without a safety net.
Whether a person has the capability, or the family or emotional resources, to parent a child with disabilities is just one of the factors that are nobody’s business but the parents’ and their doctors’.
Fellow Kentuckians: If your legislators vote in favor of HB 455, recognize them for the hypocrites that they are.
Joan Kofodimos of Louisville is a member of the board of directors of the Kentucky Health Justice Network.