Without a big change, advocates are warning that a recently-established vehicle to help people with disabilities save money without risking their government benefits could be unsustainable.

ABLE programs across the country desperately need an infusion of more account holders, according to a letter sent to congressional leadership this month from over 150 disability advocacy groups.

Established under a 2014 federal law, ABLE accounts allow people with disabilities to save up to $100,000 without risking eligibility for Social Security and other government benefits. Medicaid can be retained no matter how much money is in the accounts.

To date, 37 states offer ABLE programs, though many are open to those with disabilities nationwide.

Under the law, however, ABLE accounts are only available to people with disabilities that onset prior to age 26. Now, advocates are calling on Congress to pass a proposal known as the ABLE Age Adjustment Act that would increase the cutoff age to 46, dramatically expanding the number of potential account holders.

“Simply put, without increasing the ABLE eligibility criteria for age of disability onset from prior to age 26 to prior to age 46 in order to significantly expand the pool of individuals who can open ABLE accounts, the entire ABLE program nationwide is in jeopardy,” the letter states.

The advocates cite alarming numbers from the National Association of State Treasurers. The group, which represents state ABLE administrators and program managers, estimates that 390,000 accounts are needed by June 2021 in order for ABLE programs to reach “bare bones sustainability.”

At the end of 2017, there were only 17,000 accounts open across the country. Given the rate of adoption so far, the analysis from the state treasurers’ group suggests it is “unlikely” that the number of accounts will grow rapidly enough between now and 2021 to reach the goal.

“There is a cost associated with maintaining these accounts and with economies of scale, costs go down,” said Michael Frerichs who serves as Illinois State Treasurer and co-chair of the National Association of State Treasurers’ ABLE committee. “Eventually we hope they are self-sustaining.”

Heather Sachs, policy and advocacy director at the National Down Syndrome Congress, said that “uptake of ABLE accounts has been much, much lower than anyone expected.”

Without more accounts, she indicated that ABLE programs could fold leaving less competition and higher fees.

“The disability community has been told for decades ‘don’t put money in your loved one’s name,’ so there’s a lot of skepticism out there,” Sachs said. “We’re doing a lot of education, but the bottom line is that the biggest chance of bringing up the number of accounts to sustainability is to increase the pool.”

Disability advocates are pressuring Congress to pass the ABLE Age Adjustment Act before the end of the year, holding regular meetings on Capitol Hill and call-in days are planned this summer.

“With the help of advocates from across the country, I am optimistic about moving the bill forward,” U.S. Sen. Bob Casey, D-Pa., the legislation’s chief sponsor, told Disability Scoop.