Guest Post by Dr. Karen Summar, Joseph P. Kennedy Foundaton Public Policy Fellow.
Unless they are related to Warren Buffet, most of my patients will not be able to afford the $2-3 million dollar price tag that comes with living a lifetime with a disability. This is the amount of money it takes to provide services such as health insurance, housing, vocational, and educational opportunities over a lifetime. Unable to afford that amount of money, people with Down syndrome, like people with other disabilities, must rely on public programs, such as Medicaid, to survive. These public programs are set up such that when a person has more than $2,000 in assets and earns more than allowed by the Social Security Administration, people with disabilities lose their public benefits.
The current system forces people with disabilities to chose between saving for their future and losing essential benefits, including health insurance.
The ABLE Act changes all of that. Introduced by Congressman Ander Crenshaw (R-FL) and Senator Robert Casey (D-PA), ABLE will allow individuals with disabilities and their families to save for the future just like other families save for education.
What does this mean for my patients with Down syndrome? It means that they can go to any bank and open an account. They can contribute from their earnings and their grandparents, aunts, uncles, and parents can give them money for their savings without losing public programs. The money in these accounts, which will be structured like 529 education accounts, will earn interest tax free. Funds from them could be spent on health, education, employment training, housing, and transportation. My patients with Down syndrome will then have a nest egg for the future to purchase what they need.