Caring for a loved one with autism is expensive. The expenses of raising a child with autism can include medical care, therapies, and respite care, but they do not end there. When children with autism grow up, they still have needs, including housing, utilities, and for many, around-the-clock supervision.
A recent survey by Autism Speaks of over 10,000 people from various socioeconomic and ethnic backgrounds in the United States found that only one out of four families were saving money for their child’s future needs. This statistic is frightening, considering the sheer numbers of children who will be ageing out of the school system in the next decade.
The Achieving A Better Life Experience Act (ABLE Act – S.313/H.R. 647) would allow families in the United States to open tax-free accounts similar to college savings accounts, health savings accounts, and individual retirement accounts in order to provide for their child’s future needs. Funds could be used for qualified expenses, including medical and dental care, education, housing, transportation, and job training programs. The ABLE Act also includes Medicaid fraud protection and a Medicaid pay-back provision when the beneficiary passes away.
Money saved through an ABLE account would not count against an individual’s eligibility for federal benefits, allowing individuals with disabilities to earn an income and save money towards their future without losing the benefits necessary for daily living.
Canada currently offers a similar program using Registered Disability Savings Plans (RDSP). Contributions are not tax-deductible, but earnings and growth accrue tax-deferred until funds are withdrawn. The Canadian government helps families grow their funds by matching contributions through the Canada Disability Savings Grant and Canada Disability Savings Bond until the beneficiary reaches the age of 49. Income withdrawn from an RDSP does not affect eligibility for provincial disability benefits.
Sara Wolff, a young woman with Down Syndrome, started a petition on Change.org to encourage members of Congress to pass the ABLE act. She says,
“Just because I have Down Syndrome, that shouldn’t hold me back from achieving my full potential in life. I can work a full-time job, be a productive member of society, and pay taxes – but because of these outdated laws placed on individuals with disabilities, we hold people like me back in life.”
Under current laws, individuals in the United States can lose disability benefits if their savings accounts are over $2000, prohibiting many from holding jobs and saving money.
Senator Richard Burr (R-NC), who introduced the bill along with Senator Bob Casey (D-PA), says,
“The ABLE Act is a commonsense piece of legislation that allows families of disabled children to have the same access to tax preferred savings accounts as the parents of college-bound kids.”
With the huge numbers of children with autism who will be ageing out of the school system in the coming years, legislation like this is necessary in order to ease the burden on the social programs that are already overwhelmed.
For more information, or to sign Sara Wolff’s petition, click here.