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Passing the U.S. House 404-17 earlier this month and the Senate 76-16 on Tuesday, the ABLE Act lived up to its name and showed the country at least one topic able to hurdle congressional gridlock: helping Americans living with disabilities.
To right what he called an injustice, North Carolina’s Republican Sen. Richard Burr has worked eight years to get the Achieving a Better Life Experience or ABLE Act into law. The measure will allow Americans with disabilities to save up to $100,000 in an account similar to a tax-advantaged 529 college account to cover housing, transportation and other expenses. Under current law, disabled Americans who receive Medicaid in tandem with Supplemental Security Income benefits are not allowed to accumulate more than $2,000 without risking their eligibility.
The wealth limit has meant that those living with disabilities are forced to remain impoverished, unable to save their SSI benefits toward necessary expenses such as adaptive home features, medical equipment or a wheel-chair accessible van. They have had no easy way to accumulate a nest egg in their own names to use in the event their family caregivers predecease them.
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The limit also has forced disabled Americans who want to work, some who crave careers, to sit idle, their dreams drowned by an outrageous irony: If they want to work, they have to have assistance, and if they work, they lose the assistance Medicaid provides. Few private insurers cover all of the costly medications and in-home personal care assistants many disabled Americans require in their daily lives. And risk of a catastrophic medical event is ever-present, making few willing to take their chances with private insurers.
Unfortunately, the ABLE Act does not address the severe limits SSI places on the amount of income the disabled can earn each month. Many would gladly let the government keep the SSI payments for the chance to work and earn more money – and pay taxes – if only they could keep their Medicaid eligibility. But the measure will at least allow them to save their SSI payments or what they do earn on a job beyond the $2,000 limit.
For many parents and family members of those living with disabilities, the ABLE Act will bring some peace of mind, allowing them to stop envisioning nightmare scenarios of what could happen if their disabled love ones outlive them.
Cindy Schaefer’s 21-year-old son, Kevin, has been severely disabled by Spinal Muscular Atrophy and has used a wheelchair since he was 2. The ABLE Act has flooded the Cary family with intense relief.
“At this point we are unable to leave any money to Kevin for fear he would lose his Medicaid,” Cindy Schaefer said in an interview. “My biggest fear is that he would end up in a nursing home after we’re gone, that we don’t have any way to take care of him and we can’t leave him money to take care of his expenses, so it will be life-changing in that we can feel like he’s taken care of.”
About 54 million Americans have physical or intellectual disabilities, but ABLE eligibility would be limited mostly to people with developmental disabilities, mental illness and severe childhood conditions such as cerebral palsy.
The National Down Syndrome Society and Autism Speaks were instrumental in pushing the ABLE Act, as was Republican House Speaker John Boehner, who worked with Senate Majority Leader Harry Reid, a Nevada Democrat.
That’s right – worked with, because some compromise was required to get the measure through both chambers. There’s a $14,000-a-year limit per contribution, for one, and only people who became disabled before reaching age 26 would be eligible. Also, when the disabled person dies, any money left in the account would revert to state governments as a reimbursement for money Medicaid paid out.
This show of bipartisanship, with more than 400 lawmakers co-sponsoring this legislation and working together to get it through, should be happy news for all Americans, not just those living with disabilities.