But his biggest concern is for his son Christopher.
Christopher,15,and his other son,Nicholas,18,have autism – Christopher more severely than his brother.
“That’s what keeps me awake at night thinking: will he be,when I’m 60-70-80-90,OK?” D’Amelio said. “What will he be doing?”
The Achieving a Better Life Experience Act could help families and individuals,like his sons,who have disabilities.
D’Amelio,a data center manager from Charlotte,N.C.,was one of four witnesses who testified Wednesday in front of a Senate Finance subcommittee about the bill. It would create tax-free savings accounts for people with disabilities,and the dollars saved with the accounts wouldn’t count against their eligibility for federal benefits program.
Right now,many adults with disabilities can’t save money to cover costs related to their disabilities without becoming ineligible for programs such as Supplemental Security Income or Medicaid.
One of those people is Sara Wolff of Moscow,Pa.
Wolff,31,has Down syndrome. She works two part-time jobs – as a law clerk and in a community resource office – and has to coordinate with her employers so she doesn’t earn more than $700 a month. She receives about $400 from SSI.
“Currently,I cannot have more than $2,000 in assets before the government aid that I need is cut off,” Wolff testified. “In this day and age,$2,000 is not a lot of money,and with the rising costs of housing,transportation and medical assistance that I need,it is tough for me to be able to save.”
Chase Phillips,a financial adviser at Bank of America Merrill Lynch in Alexandria,Va.,said the theory is that since disability insurance benefits are intended to pay for a person’s food and shelter,if those goods and services can be funded by another source,there is less need for the benefits.
Disabled individuals are also not able to save in other tax-advantaged saving vehicles such as Roth or 401(k) retirement accounts or 529 education savings accounts because the money is counted as a part of the $2,000 asset ceiling,Phillips said.
“In essence,Warren Buffett can gift $14,000 per year into a 529 college savings account and receive the benefits of those assets growing free of taxes,assuming they are used for qualified education expenses,” Phillips testified. “Yet,a disabled American receiving SSI is not afforded this right,and thus is not only denied the right to utilize such a tax vehicle,but is essentially unable to save for their own retirement. If this is not considered discrimination,then I don’t know what is.”
This forces many people with disabilities to rely on their families or communities for support. More than 70 percent of adults with disabilities are still living at home with parents or caretakers.
But when parents or caregivers die,it could leave people with disabilities struggling financially.
D’Amelio knows that his daughter Lindsey,10,will have to care for Christopher and keep tabs on Nicholas once he and his wife are gone. He said if he could save money in an ABLE account,it could help ease her burden.
Wolff,who lost her mother last year,has been a big supporter of the bill,which has 75 senators and 366 House members behind it. She wrote a change.org petition earlier this year calling on Congress to pass the bill. Her petition has more than 250,000 signatures.
The account created by the bill would fund expenses,including medical and dental care,education,community-based support,employment training,assistive technology,housing and transportation. It would have a $100,000 cap,Phillips said.
“Just because I have Down syndrome,that shouldn’t hold me back from achieving my full potential in life,” Wolff said. “I can work a full-time job,be a productive member of society and pay taxes – but because of these outdated laws placed on individuals with disabilities,people like me are held back in life.”
Reach reporter Erin Bell at [email protected] or 202-326-9866. SHFWire stories are free to any news organization that gives the reporter a byline and credits the SHFWire.