Playing politics with the disabled

The Achieving a Better Life Act (ABLE) is one of those rare good ideas that seem to have a chance of making it through Congress and becoming law. The bill is designed to tweak the tax code so that people on Supplemental Security Income (SSI) can earn and even save some money without threatening their benefits.

Currently, too many people who are unable to keep full-time work because of a disability but cannot survive on disability insurance alone are trapped in limbo. They cannot save more than $2,000 without losing their benefits. They also can’t earn steady money by working. Social Security and Medicaid, however, do not cover all the costs that millions of disabled individuals face, whether for health care, housing, transportation or education. The very benefits that are supposed to help disabled people also restrict them from planning for the future or trying to improve their lives. ABLE, by creating special savings accounts for qualified expenses, would fix this Catch-22.

Seventy-four senators and 381 representatives are co-sponsoring ABLE. In a rational congressional environment, speedy passage would be assured. But Congress is often dysfunctional, and the issue has been pushed into the lame-duck session. While major supporters remain confident that ABLE will be passed, many people with disabilities and their caregivers are getting nervous about its prospects.

The House version of the bill operates with a narrower definition of disability than the Senate’s — a sign of a deeper political debate about just whom SSI is supposed to cover. Initially, the House Ways and Means Committee advocated cutting other disability benefits to pay for ABLE, potentially playing one group of disabled against another. The powerful right-wing Heritage Foundation has come out against ABLE and listed it as a lame-duck bill to quash.

The pressing need for the passage of ABLE and the rhetoric employed by its detractors illuminates some of the challenges of being disabled or caring for someone who is disabled in 21st century America. For a country whose rhetoric often emphasizes self-reliance and hard work, the status quo is built around limiting the independence of disabled people. But many conservatives seem unwilling to fix the situation for all disabled Americans, preferring to use the disabled as pawns in a political effort to identify and separate the worthy from the unworthy disabled and poor.

Who are the people this bill would help? Consider Courtney (not her real name), who lives in a suburb of Chicago near other members of her family. She is in her mid-30s and has a complicated diagnostic history. She was born about three months prematurely (in 1980), diagnosed initially with “profound mental retardation,” autism at age 2, hearing loss at 5 and Asperger’s syndrome at 18. She does not believe she is autistic and blames her challenges on her hearing loss. Courtney was fully included throughout most of her education, graduated from college and has a master’s degree. In the meantime, her family is increasingly concerned about her emerging but undiagnosed mental health issues, which periodically manifest themselves as paranoia.

In short, Courtney is a complicated member of the almost 9 million Americans on SSI. She can sometimes work, but she cannot reliably support herself with a job. Although she relies on SSI, it does not provide enough to live on, nor may she supplement it with part-time labor. The rules of SSI permit savings of only up to $2,000 before government aid is cut off.

Courtney and her family are trapped. She can’t make ends meet by working. She can’t survive on SSI. Her family wants to help, but setting up any kind of fund for her would threaten that $2,000 limit. She wants to work, to hire job coaches and to become more independent. The law makes that almost impossible.

ABLE would improve Courtney’s situation. It would add a rule to the tax code’s section 529, which governs tax-free college savings, to create special savings accounts for people with disabilities. Via these accounts, individuals and their supporters could earn or contribute up to $14,000 a year, capping at $100,000 total, and spend this money on the kinds of necessary expenses that federal benefits don’t cover — education, job coaches, transportation, long-term care and more.

The act creates not an entitlement but a pathway to independence — a goal driven by advocates with Down syndrome. These individuals want to plan for their futures, especially as their parents and caregivers age. Sara Wolff, for example, became focused on ABLE when her mother died. Wolff, who has Down syndrome, started a hugely successful petition in support of the act and has testified about it before Congress.

Lawrence Carter-Long, a public affairs specialist for the National Council on Disability, says, “If properly implemented, the ABLE Act has the potential to modernize savings options and increase opportunities for asset building for Americans with disabilities, which could also reduce reliance on government supports.” Many congressional representatives agree. Rep. Cathy McMorris Rodgers, R-Wash., the mother of a boy with Down syndrome, commented, “I understand firsthand how federal policies can limit — not expand — opportunities for those with disabilities. The ABLE Act will change that.” She and other elected officials cite bipartisan support in both legislative chambers.

But in recent weeks, the Heritage Foundation has launched an attack on ABLE. It’s unclear whether they can sway enough members of Congress to derail the legislation, but the writers of a Heritage Foundation report have tapped into two arguments embedded in Republican discourse about poverty and disability. First, they call ABLE a welfare bill, even though ABLE doesn’t provide benefits, because there will be some people currently not on SSI (because they work or have a little savings) who will be able to join the program.

The more interesting Heritage Foundation criticism emerges at the end of the report. The authors write that if ABLE passes, “eligibility for ABLE accounts should be limited to children with clear clinical conditions that create severe disability; for example, blindness or Down’s syndrome.” Those two examples reveal profound ignorance about disability. Both conditions can create severe challenges but are nothing like each other in kind, especially in the context of the work environment.

Both conditions are, though, generally sympathetic ones. Here, the Heritage Foundation is attempting to separate out only the most worthy among the disabled in order to narrow the bill. The House bill, in which only those who became disabled before the age of 26 would be eligible, does something similar. For the House, children born blind would be eligible but not people who became blind in their 40s.

The House bill and the Heritage critique emerge from the Republican worldview about poverty and disability. As recently as last July, Senate Republicans were attacking SSI as packed with fraudsters, comparing the bad people of SSI with the ostensibly more worthy elderly poor who rely on the main Social Security funds.

Much worse, North Carolina’s Sen.-elect Thom Tillis said in 2011, “What we have to do is find a way to divide and conquer the people who are on assistance. We have to show respect for that woman who has cerebral palsy and had no choice in her condition, that needs help and that we should help. And we need to get those folks to look down at these people who choose to get into a condition that makes them dependent on the government.” Tillis wants people with cerebral palsy and similar conditions to “look down” on those deemed less worthy. That’s the underlying perspective for the Heritage Foundation as well and a bias built into the House bill.

Support the sympathetic, divide and conquer, cut off the rest.

As we head into the final few weeks of the 113th Congress, questions remain. Will ABLE pass? What definition of disability will emerge in the final bill? Who will Congress consider worthy?

This is why Courtney’s story is so important. I am the father of a boy with Down syndrome and am personally invested in this bill’s passage. I know, though, that whatever passes, my son — diagnosed since birth — will be included in the definition. No one wants to take his benefits away. But what about Courtney? What about the person who develops disability through injury, age or disease later in life? They too need the ability to save, to work and to garner what independence they can.

This is the danger of playing politics with disability. Definitions are complicated, and needs are real. Instead of trying to divide and conquer, let’s pass a bill that can offer dignity and security to all.