The ABLE Act: changing the cost of a life with Down syndrome

Since the House of Representatives passed the ABLE Act in December 2014, it has gone on to be enacted into law with dozens of states already enacting enabling legislation for the ABLE savings accounts and the Treasury Department finalizing regulations for these accounts. A thought occurred on the impact these savings accounts will also have on prenatal genetic testing.

Prenatal genetic testing is covered by state Medicaid programs and private insurance. These choices of what health care services to cover are necessarily economic decisions, with the decisions usually being made based on whether covering the costs of one service will reduce the overall costs of other services. In the case of Down syndrome, these economic decisions are macabre and echo the awfulness of eugenics logic.

Typically, these coverage decisions are justified based on cost-effectiveness studies. These studies conclude that investing in the costs of prenatal genetic testing are justified because they will spare even higher costs. How’s that, you may ask? How is it that covering the cost of prenatal genetic testing–the vast majority of which are for women not carrying a child with a tested-for condition and therefore, arguably, unnecessary–can be outweighed by other costs? What exactly are those other costs?

The costs that some academics, bioethicists, and healthcare economists claim is the life of a person with Down syndrome.

And, not just the cost of a life of a person with Down syndrome. But the “extra” costs that having Down syndrome is assessed as imposing on a person. The costs of additional therapies and surgeries, and Medicaid services. All of these costs are incurred because federal law requires the provision of therapy, and as a society we have decided it is right and just to care for those who can not care independently for themselves through no fault of their own. These compassionate costs are then tallied up and found to exceed the costs of covering prenatal genetic testing.

It is argued that the costs of prenatal genetic testing should be covered because that then allows an expectant mother to find out prenatally she’s going to have one of these “extra” cost kids with Down syndrome, and she can have an abortion, thereby avoiding the costs of Down syndrome to society.

Or so the whole sick, stupid, wrongheaded, and inaccurately-done cost-effectiveness arguments go.

But the ABLE savings account may just change that.

As children with Down syndrome (and other disabling conditions) are born to families who can establish these accounts and save for their children, then these individuals with Down syndrome can access more and better educational, healthcare, and community-living alternatives. As these individuals with Down syndrome receive better care, then their overall health will improve. And, as their health improves, they will have less need for accessing costlier health services. Moreover, some of the cost calculations will have to be refigured since these lives with Down syndrome that also have savings account will be able to afford some health care costs that otherwise would have been calculated as a cost to the public system to be avoided.

Through the ABLE savings account maybe we’ll see what those of us who have a child with Down syndrome realized once we started raising our children: that our children are not nearly as disabled as society previously thought and, often, what was disabling our children were the rules in place at that time by society.

The ABLE Act is changing society’s rules so that individuals with Down syndrome can lead healthier, less disabled lives.

And, that should change the whole cost-effectiveness analysis of how much a life with Down syndrome truly is worth.

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More on the ABLE Act here, here, and here.