Autism Speaks joined with advocates from the nation’s other leading disability organizations today to make the case before Congress for ABLE—a bill that would allow families raising children with disabilities to save tax-free for their future needs.
The briefing was organized by Reps. Ander Crenshaw (R-FL), Chris Van Hollen (D-MD), and Cathy McMorris Rodgers (R-WA) all cosponsors of HR.3423, the House version of the Achieving a Better Life Experience (ABLE) Act. A panel of disability experts, including Stuart Spielman, senior policy counsel with Autism Speaks, addressed the briefing.
The Achieving a Better Life Experience Act would level the playing field for individuals with autism (and other disabilities) and their families to save for disability-related expenses. Just as families can put away savings in tax-exempt accounts for children to go to college, the ABLE Act would allow such accounts for individuals with disabilities to cover their future education, housing, transportation and related expenses. ABLE Accounts would resemble existing 529 college savings plans and would supplement, not replace, benefits provided through Medicaid, private insurance or employment.
Spielman noted the 600 percent increase in the prevalence of autism over the past two decades and the financial hardship encountered by many families caring for loved ones with autism. The ability to plan for the future needs of loved ones with autism would offer another resource for some families, he said.
John Ariale, Rep. Crenshaw’s chief of staff, said the bill was drafted so that SSI and Medicaid benefits would not be negatively impacted by opening an ABLE account. If the account balance reaches $100,000, SSI benefits would be suspended, he said. SSI benefits would resume if the account balance drops below $100,000.
Crenshaw and Van Hollen said the bill enjoys strong bipartisan support in both the House and the Senate, and already has over 90 House sponsors.
Qualified disability expenses under ABLE would include: school tuition and related educational materials; expenses for securing and maintaining a primary residence; transportation; employment supports; health prevention and wellness costs; assistive technology and personal support; and various miscellaneous expenses associated with independent living. Eligibility would extend to any individual who is receiving supplemental security income benefits or disability benefits under Title II of the Social Security Act, or “who has a medically determined physical or mental impairment, which results in marked and severe functional limitations” that can be verified by a physician.
Spielman noted that he and his wife were able to establish a traditional 529 account for their typically developing son to save for his college expenses, but are unable to do so for their other son who has autism to save for his future life needs. The ABLE act would improve the quality of life for individuals with disabilities, he said.
Parents raising children with disabilities, including autism, could soon save for their futures with tax-free “529″ savings accounts without jeopardizing their eligibility for other benefits.
The new accounts would be authorized under the Achieving a Better Life Experience (ABLE) Act of 2011, which was introduced today in Congress with the support of Autism Speaks, The Arc, the National Down Syndrome Society and a host of other disability rights groups.
The ABLE Act, sponsored with bi-partisan support in the House by Congressman Ander Crenshaw (R-FL) and Congresswoman Cathy McMorris Rodgers (R-WA), and in the Senate by Senators Robert Casey, Jr. (D-PA) and Richard Burr (R-NC), would amend Section 529 of the Internal Revenue Service Code to allow individuals with disabilities and their families to deposit earnings to tax-exempt savings accounts. The funds could be used to pay for qualified expenses, including education, housing and transportation, and would supplement, not replace, benefits provided through private insurance, employment or public programs.
“This is important, common sense legislation that will provide an incredible financial boost to families affected by autism and other disabilities who are struggling to pay for critical services,” said Bob Wright, Co-founder of Autism Speaks. “If we allow families to save tax-free for college, it is only fair that they be permitted to save to meet the needs of all of their children.”
Qualified disability expenses would include: school tuition and related educational materials; expenses for securing and maintaining a primary residence; transportation; employment supports; health prevention and wellness costs; assistive technology and personal support; and various miscellaneous expenses associated with independent living.
“According to a Harvard School of Public Health study, the cost of caring for a person with autism will exceed $3 million over their lifetime,” said Peter Bell, Autism Speaks executive vice president of programs and services, who spoke at a Capitol Hill press conference where the introduction of the bill was announced.
“Providing care for adults with autism is often far more expensive than for children, yet there are fewer funding resources. As more and more of our children with autism age to adulthood, our hands remain tied in planning for their future, said Bell. “The need for new resources to provide them with necessary care and services is imperative.”
Nora Fitzpatrick and Robert Stephens of Gaithersburg, MD, whose six-year-old daughter, Rory, has autism say the ABLE accounts could help then plan for a more secure future when Rory will join the rising tide of Americans with autism who enter adulthood without assurances of services or financial security.
“In the past four years we have seen huge strides in improvement as well as baby steps,” said Nora. “We’ve also seen behavioral issues pop up and health issues that have set Rory back. The uncertainty of everything is a huge part of the equation for us. The opportunity to start a 529 plan for Rory would be a great way to give us some certainty and comfort for the future.”
House Co-sponsor Rep. Ander Crenshaw (R-Florida) dicussed the ABLE Act in a House floor speech on Thursday, November 17.