Craig Donatelli buses tables part time at Denny’s. He lives in a group home and can stay by himself for several hours at a time.
But to continue to qualify for the benefits that help pay for his care, the outgoing 26-year-old with Down syndrome can’t save more than a couple thousand dollars of his earnings at a time.
“It’s challenging,” said his father, Max Donatelli. “We want to be able to have him put money away, and we want to put money away for him.”
The Donatellis on Monday joined Sen. Charles E. Schumer and more than a dozen other young adults with disabilities for a news conference at People Inc. in Amherst to call for the creation of tax-free savings accounts that would allow people with long-term physical and mental disabilities to save for medical, transportation, housing and other care costs.
Schumer,is a co-sponser of a bill, first introduced in February 2013, that would allow families to set up accounts for the long-term care of individuals with disabilities, such as autism, Down syndrome or Fragile-X. The accounts would be similar to individual retirement accounts and 529 education savings accounts, Schumer said.
“That will save families that have developmentally disabled kids thousands and thousands of dollars over their lifetime,” said Schumer, whose office said the savings accounts would be capped at $375,000.
Interest earned on the savings account would not be taxed, and the savings would not count against a cap on earnings and assets over which individuals do not qualify for disability services.
“These savings accounts are critical because it allows people and families to prioritize savings without risking the income cap for key disabilities, like SSI, Supplemental Security Income,” Schumer said. “The bottom line: Families shouldn’t have to choose between saving for their daily life and paying for their child’s care.”
Schumer joined families and administrators from agencies that care for people with developmental disabilities to call for the creation of the new accounts by the end of the year.
“This is helpful, absolutely,” said Kathy Bunce, a Getzville resident who worries about the long-term care for her 19-year-old daughter, Samantha.
The proposed savings accounts, Bunce said, would help parents like her save for their children’s care, but she also worries about cuts to Medicaid in New York State and other changes to disability benefits that she said have made it more difficult for parents to plan for the adult lives of their children.
Bunce’s daughter, who is very social but is nonverbal and has a seizure disorder, was diagnosed with a rare chromosomal mutation last month.
“It’s a step in the right direction,” Bunce said of the savings account proposal, “but we have a long way to go.”