The Financial Stress Of Disability: Why Families Need The ABLE Act
07/25/2013 - 13:46
Frances Victory
Frances Victory
Frances Victory

According to a 2006 Harvard School of Public Health research study, the cost of raising a child with autism can range from $67,000 to $72,000 per year. Over a lifetime, an autistic person’s care will cost between $1.4 million to $3.1 million.

In my dissertation research, which involves interviewing Jewish parents of children with autism, financial stresses come up often, and understandably. But a bill before Congress, the ABLE Act, recognizes their struggle and, if passed, could help ease it.

“I am very concerned for our family finances if we keep this up because we are trying to provide him with everything that he needs but at the same time this is a huge financial issue… I mean it is a major financial drain on us. You are dealing with those financial pressures and in addition you dealing with the day-to-day care of a 12-year-old who needs 24 hour a-day supervision,” one mother said.

She went on to discuss a recent conversation with a friend who did not have a child with autism. The mother was telling the other woman that she was getting concerned about their family’s finances. The woman responded, “I totally understand. We are in the same position.” 

The mother of the child with autism wanted to say, “I wish you would understand. No one gets these figures and I am certainly not putting my bank statement on the ground for them to see. You are comparing apples and oranges. Regular expenses and special needs expenses. Two completely different worlds.”

These families worry about money every day.

“I don’t know where his financial support will come from besides what I can leave to him,” said a father. “So I think ‘Should we spend this money or should I make sure it is available for him in the years to come when we are not here?’”

The Achieving a Better Life Experience (ABLE) Act of 2013 aims to help such families save money for the future by creating tax-exempt savings funds that could cover costs related to education, employment support, health care, housing and transportation. Crucially, the accounts would jeopardize any government benefits such as Medicare, which are given only to those who meet income and asset limits.

Co-sponsored by 36 Senators and 176 members of the House, the bill is under review but in limbo until broader tax reform legislation passes. In the meantime, we can all check to see if our Senators and Congresspeople have sponsored the bill. If not, please contact their office and tell them how important it is to you that they help these families save money for their children’s future. For more information, please also read this post on the ABLE Act from William Daroff, who heads the Jewish Federation of North America's lobbying arm.

Frances Victory is a Developmental Psychology PhD candidate at CUNY Graduate Center in New York City. You can reach her at victory.frances@gmail.com

Comments

I applaud your work but there is something incredibly important for families to understand which is that the ABLE Act has major flaws. The biggest is that there is a lien for any Medicaid used by the disabled beneficiary from the time the account is set up upon the beneficiary's death or no longer being disabled. READ THE ACT - don't just look at the legislative announcements which are incredibly misleading. Also - if the beneficiary is no longer found to be disabled - which could be because they become self supporting - then the lien is due immediately.

For parents and advocates - read the act and demand that our advocacy organizations and legislators give us real assistance - not just feel good legislation with announcements that hides important facts.

Stephen, Helen Chernikoff here, the blog's editor. Thank you so much for your comment. Would you like to write something about the Act for the blog?

Stephen, I am hopeful there will be a followup that provides a clarification with respect to the point you brought up. Would this mean that my special needs child's estate would be required to repay the public benefits he had received prior. Also, would it be protected with a properly prepared special needs trust?

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