I was surprised – and a little embarrassed – to learn only recently about a law that was passed in 2014, which assists families with members who have disabilities. The information I am describing comes from an article in the August 2025 issue of Contemporary Pediatrics entitled “Empowering children with disabilities,” by Christopher Connolly, MD, MBA, MS, and Margeaux Naughton, MD. They wrote about ABLE accounts, established through the Stephen Beck Jr. Achieving a Better Life Experience (ABLE) Act. These accounts are designed to help children with disabilities by letting their parents save for disability-related expenses without risking their Supplemental Security Income (SSI) benefits. And both the earnings and the withdrawals are tax free if used appropriately.

A person is eligible if their disability began before aged 26 years. There are additional criteria but the applicant only needs to fulfill one of these: receiving or entitled to receive SSI benefits, having a condition listed on the Social Security Administration’s list of Compassionate Allowances Conditions that causes marked and severe functional limitations, or having a written diagnosis from a physician confirming a physical or mental impairment that results in marked and severe functional limitation. Patients with trisomy 21 (Down syndrome), cerebral palsy, spinal cord injuries, autism spectrum disorder, complex congenital heart disease, and inborn errors of metabolism, among many others, may be able to take advantage of an ABLE account. The money that is in the account can be used for more than just medical expenses. Housing (including utilities and property taxes), education, health care, training, support services, legal fees, and assistive technology may qualify.

The state of Connecticut has information that will help a family to set up such a tax-advantaged account. Here are some websites that you can use to learn more about ABLE accounts: www.ablenow.com, https://portal.ct.gov/ott/about-the-treasury/able-act. And here is an excellent discussion of the benefits and disadvantages of both ABLE accounts, as well as a different option called a special needs trust: https://buschlegal.com/able-account-vs-special-needs-trust-which-is-right-for-me/. This last site is presented by a law firm that apparently has expertise in this area. It is possible, I am sure, to set up an ABLE account without an attorney or an accountant. The minimum initial deposit is only $25, according to the article I read. However, trusts are usually more complicated and, in my experience, need a lawyer.

Because the health care system in the United States is not as advanced as those in more enlightened countries, financial considerations can play a large role in decision making. In children with chronic conditions, planning will make a big difference.

Robert B. Golenbock, MD, is currently retired. He has cared for children in the Danbury area for 43 years, including at the Center for Pediatric Medicine. The CPM is located at 107 Newtown Rd, #1D, Danbury, CT, 06810. For more information, please call (203) 790-0822 or visit their website at https://centerforpediatricmedct.com.