In many ways, Anne Gerhardt is a typical 15-year-old girl.
She likes the color purple and the mashed potatoes at Carrabba’s Italian Grill. She dreams of seeing Justin Bieber in concert and enjoys gardening in her freshman science class at Turpin High School.
What sets Anne apart, though, is that she has Down Syndrome. And that has made a world of difference in how her parents can plan for her future.
Federal laws restrict how much money people with a disability can earn each month and limit their total net worth to a meager $2,000 in order to remain eligible for such critical programs as Medicaid and Social Security.
“For me, it’s patently unfair,” said Chip Gerhardt, Anne’s father. He’s president of downtown-based Government Strategies Group and chairman of the National Down Syndrome Society. “How long have we heard that you should save, save, save for your future. And in the case of our daughter, Anne, we can’t do that.”
That’s why advocates for people with disabilities are pushing for passage of the federal Achieving a Better Life Experience Act, known as the ABLE Act. The law would amend Section 529 of the Internal Revenue Service Code to allow for the creation of tax-free savings accounts for people with disabilities.
The National Down Syndrome Society has made passage of the ABLE Act its top priority this year. And Gerhardt will be one of hundreds of representatives in Washington, D.C., starting Wednesday for the society’s Buddy Walk on Washington to urge Congress to pass the bill. (He told Anne maybe she can go with him next year.)
Similar to 529 savings accounts
An ABLE account would be similar to a 529 account that parents establish to pay for a child’s college tuition. But these accounts also could fund expenses such as medical and dental care not covered by Medicaid, employment training, assistive technology, housing and transportation.
Unlike a special needs trust that can be established under current law, the ABLE Act would give disabled adults a say in how the money set aside for them is spent, giving them more independence.
“People with disabilities want to be full, productive citizens, just like everyone,” said Sara Hart Weir, vice president for advocacy and affiliate relations for the National Down Syndrome Society.
The act would apply to anyone with a disability. And U.S. Census data shows that roughly 22 million families across the nation would qualify, said Michael Morris, executive director of the National Disability Institute in Washington, D.C.
“No two families are alike,” Morris said. “And children as well as adults with disabilities have such varying needs. But the ABLE account really addresses that. It could pay for rent to live in an apartment independently. It could pay for a communication device for a child with cerebral palsy. It could pay for transportation to and from a job.”
Advocates: Fund would lead to independence
Amy Schinner said an ABLE account could one day pay for the help that she expects her son will need to live independently.
Her son Ben, 15, is on the autism spectrum. He does well with his schoolwork at Lakota West Freshman School, and he’s on track to attend a university.
But, Schinner said, she and her husband assume Ben will always need assistance of some kind.
“The social skills navigating the world are not so great,” she said. “We could use a savings account to hire people to help him be independent of us but still be able to function.”
The bill has overwhelming bi-partisan support in Congress, Weir said. The idea has been introduced in years past. But advocates think this year marks the bill’s best chance for passage.
“It’s just such an important thing that I can’t believe no one’s done it before,” said Dr. Bryan Osterday, a dentist who also is co-chairman of Autism Speaks in Cincinnati.
Osterday’s 9-year-old son, Reece, is on the autism spectrum. He also has a mild form of cerebral palsy and epilepsy. It’s hard for him to get around sometimes, Osterday said, and if Reece ever gets to the point where he can’t climb stairs, that would require some major renovations.
“A lot of families with autism literally are on the verge of bankruptcy,” he said. “It’s absurd what these families have to go through to care for their kids. It sickens me.”
‘I can help pay my own way’
Removing the tax burden that families bear by allowing them to set up ABLE accounts would go a long way, Osterday said.
The federal government is expected to lose $1 billion over a number of years in lost tax revenue if the ABLE act passes, Morris said. But that doesn’t account for the money the government will ultimately save if more disabled adults can care for themselves and need fewer government services as a result, he said.
And the act would allow families to start saving much earlier for a lifetime of expenses.
Alan Abes is already thinking about that for his son, even though little Harrison is only 16 months old. Harrison has Down Syndrome, and Abes said he and his wife want to make