Do you want to be “ABLE” to save tax-free for the future needs of your child with autism? Then come join Autism Speaks and advocates from 48 other national disability organizations tomorrow in Washington, D.C. for a Capitol Hill briefing on the Achieving a Better Life Experience (ABLE) Act. The briefing will be held from noon to 1:30 pm in Room B-339 of the Rayburn House Office Building.
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.
The briefing has been organized by Reps. Ander Crenshaw (R-FL), Cathy McMorris Rodgers (R-WA) and Chris Van Hollen (D-MD), all cosponsors of HR.3423, the House version of ABLE. A panel of experts, including Stuart Spielman of Autism Speaks, will address the briefing.
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. Providing care for adults with autism is often far more expensive than for children, yet there are fewer funding resources. As more and more children with autism age to adulthood, their families are growing increasingly frustrated over how to plan for their future. The need for new resources to provide them with necessary care and services is imperative.
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. 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.
This guest post is by Stuart Spielman, Senior Policy Advisor & Counsel for Autism Speaks.
On January 13 and 14, the Institute of Medicine (IOM), the health arm of the National Academy of Sciences, held a public workshop on a critical part of the new healthcare reform law, the essential health benefits package. The law describes as essential the following general categories of items and services:
- Ambulatory patient services
- Emergency services
- Maternity and newborn care
- Mental health and substance use disorder services, including behavioral health treatment
- Prescription drugs
- Rehabilitative and habilitative services and devices
- Laboratory services
- Preventive and wellness services and chronic disease management
- Pediatric services, including oral and vision care
The task of the IOM, and ultimately the Secretary of Health and Human Services, whom the IOM is advising, is to develop the rules for using this list in designing health plans that will be offered beginning in 2014 through state insurance marketplaces.
For families affected by autism spectrum disorders(ASD), the fifth item on the list holds a special meaning. The words “including behavioral health treatment” do not appear by accident; on the contrary, these words are part of the law because of amendments offered by Representative Mike Doyle, co-chair of the Congressional Autism Caucus, and Senator Robert Menendez. As Senator Menendez pointed out at the time he offered his amendment.
Behavioral health treatments help to reinforce wanted behaviors and reduce unwanted behaviors, and the treatments are critical for individuals affected by autism and a variety of other disorders.
They can help a child to communicate and care for themselves; they can help that child from — stop him from hitting himself and those around him; they can enable a child to attend regular education classes, rather than special education classes; they can enable a child to live at home, rather than an institution.
Representative Doyle and Senator Menendez (joined by Senator Richard Durban and Senator Robert Casey) have separately written the IOM, urging that the behavioral health needs of people with autism spectrum disorders be addressed and that applied behavior analysis be included in all health plans. The IOM and the Secretary should accept this counsel.
On January 18, the Interagency Autism Coordinating Committee (IACC) considered health care reform and insurance coverage issues as part of its meeting agenda. These issues are likely to be further considered at the next full meeting of the committee on April 11. The focus on health care reform at the IOM and the IACC present a critical opportunity to correct a decades-long pattern of discrimination against people with ASD.