December 21, 2014; Inquisitr
In the midst of what was almost the least productive Congress ever (the 113th barely beat the 112th Congress due to a flurry of legislation naming post offices), Congress did manage to accomplish something important on its way out of town: It passed the Achieving a Better Life Experience (ABLE) Act, which may be the most important legislation responding to the needs of persons with disabilities in perhaps a quarter century. The legislation passed with a surprising degree of bipartisan comity, at least in these times—404 to 17 in the House of Representatives; 76 to 16 in the U.S. Senate.
Under the ABLE Act, persons with disabilities will be able to save as much as $100,000 in an account to address expenses such as housing, transportation, employment training, education, and other “qualified disability expenses.” The account would be treated comparably to a tax-free college 529 account. Disabled persons or their families who open an ABLE account can deposit as much as $14,000 annually.
Critically important is the fact that ABLE accounts will not cause a person with a disability to forfeit other means-tested public assistance such as Medicaid or Supplemental Security Income (SSI), both of which, prior to ABLE, had placed severe restrictions on financial assets ($2,000 for individuals, $3,000 for couples).
Several implications and lessons abound here:
First, while the ABLE Act has been a longtime cause for the disability community, its passage with bipartisan support is not just important for persons with disabilities. It is an achievement, albeit rare, concerning entitlement reform. Parents of children with disabilities know the entitlement program game, even parents who happen to be members of Congress. For example, Rep. Cathy McMorris Rodgers (R-WA), recalled about her seven-year-old son who was born with Down syndrome, “When Cole was born, my husband and I were told, ‘don’t put any assets in his name because he may need to qualify for one of these programs in the future.’” Entitlement programs were sending persons with disabilities a confusing and contradictory message. Although public policy purportedly aimed to help and encourage persons with disabilities to work and save and pull themselves out of poverty, even a minimum accumulation of financial assets would cause them to lose SSI and Medicaid. ABLE corrects the problem of entitlement and disability policies at loggerheads.
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Second, the ABLE Act passed without having to be “perfect.” There are probably shortcomings in the ABLE concept—and those shortcomings aren’t the knee-jerk fears of Robert Rector and Romina Boccia of the Heritage Foundation, who argue that the ABLE Act constitutes “a decisive step in expanding the welfare state” (due to its elimination of the Medicaid and SSI asset tests for persons with disabilities) and somehow in their formulation “reduce[s] the incentive to work and increase[s] welfare dependence.” Contrary to Rector and Boccia, the pre-ABLE situation for persons with disabilities required people to be poor and to remain poor. With the enactment of ABLE, persons with disabilities—generally facing higher and different expenses than persons without disabilities—will be able to work without sacrificing critical safety net support.
A more legitimate and practical weakness in the bill is the language that mandates that a beneficiary of an ABLE account must have been diagnosed with a disability before his or her 26th birthday. The age division means that the legislation fundamentally benefits persons with developmental disabilities and severe childhood disabilities and does not provide tax-preferred savings eligibility to people whose onset of disability occurs later in life due to accidents or illnesses. Another limitation is that the benefit of ABLE accounts, much like 529 college accounts, goes primarily to individuals and families with the ability to open these accounts and regularly deposit close to the maximum. As a result, the ABLE Act doesn’t focus deeply on very low-income persons with disabilities. In both instances, however, while these are weaknesses in the legislation, neither is so serious as to have warranted opposition to a bill that would potentially help many millions of persons with disabilities who currently do find themselves unable to save money to pay for some of the costs associated with their disabilities without losing their public assistance eligibility.
Third, and perhaps most important, is what the ABLE Act teaches about the importance of advocacy. Shannon Knall, the policy chair of Connecticut Autism Speaks, recounted her first forays into public policy advocacy around the ABLE Act some seven years ago, describing herself as “absolutely the definition of accidental advocate”: “I was with my friends and fellow autism moms slogging around the Hill in unsensible shoes…lost, late for appointments, our feet aching. We were four moms of autistic children walking around the Hill with our hearts on our sleeves.”
Congresswoman Elizabeth Esty, in response to a reporter, explained that the ABLE Act passed “because of the advocates.” Among the most visible and active advocates pushing for the ABLE Act over the years—and countering the arguments of the opposition—have been the Autistic Self-Advocacy Network, the National Down Syndrome Society, the National Fragile X Foundation, and the many other members of the Coalition to Promote Self-Determination. It wasn’t just advocacy; it was the staying power of the advocates and their willingness to fend off efforts to divide persons with disabilities against each other. Knall from Autism Speaks summarizes the advocacy lessons:
“And there it is folks. Our voices matter. Even when we don’t think they do, someone is taking stock. So get in there. Even if it scares you. Send an email. Make a phone call. Because it all matters…So the future of our children is entrusted to all of us, as advocates. Regardless of your stature—accidental advocate or elected official. Now is the time to capitalize on this movement to change the future for our loved ones. This movement belongs to you and it belongs to me. And most importantly, it belongs to every autistic individual, each disabled person—each with his or her own needs.”