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Financial security remains elusive for too many disabled people

Maryland resident Aaron Kaufman is a disability rights advocate who has been trying to change that

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Sometimes people speak to Aaron Kaufman as if he were a child.

The pitch of their voices rises, and they slow their words to make sure he understands them.

“Are you helping Mommy get bread today?” a grocery store clerk once asked him.

At the time, Kaufman was in his 20s and attending the University of Maryland. The question annoyed him but didn’t surprise him.

“People automatically assume when you have cerebral palsy that you have an intellectual disability,” Kaufman, who is now 35, said. “I often have to gently educate people.”

In Washington, when legislation moves forward, it is usually lawmakers who get quoted. They get the credit. But anyone who has ever paid close attention to the legislative process knows there are many hidden figures behind each advancement. There are people who have participated in formal and informal meetings, and shared their stories over and over, to help individuals who hold the power to enact change understand the need for it.

Kaufman is one of those people. For years, the Maryland native has been working behind the scenes for Jewish Federations of North America to push for legislation that will offer more financial security to people with disabilities.

“Sometimes when I go to Capitol Hill, people get really big eyes,” he said. “They’re shocked to see someone in a walker, because there is a societal perception that people with disabilities can only achieve the four F’s — food, flowers, filing and filth.”

To change stigmas and stereotypes, he said, people “need tools and support to help them flourish, and that’s what I do every day — advocate for the tools.”

This week, the country celebrated the 32nd anniversary of the Americans With Disabilities Act. Across social media platforms, people shared encouraging posts about how they have benefited from the ADA. Many also noted that there was much more work to do.

It just takes talking with Kaufman to see that disability rights go far beyond the physical accessibility issues many people associate with the ADA. It’s easy to see how a lack of ramps or broken elevators keep disabled people from accessing a space. More complicated are the ways systems have been designed to keep them from earning and saving enough money so that they can live more independent lives.

I write often about disabilities and poverty, and that has placed me in the unique position of witnessing time and again those two issues overlap. Being born with a disability should not condemn a person to a life of begging for services and worrying about how much they can save before those services are taken away — but too often it does. Disabilities also grow from poverty. I have interviewed more than a few parents whose children developed disabilities from housing conditions they couldn’t afford to escape.

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When I spoke to Kaufman, he reminded me of a statistic I had heard before: Disabled Americans are twice as likely to be poor as those without disabilities. But he also offered reason for optimism.

One piece of legislation that he and other disability rights advocates have been pushing for — the ABLE Age Adjustment Act — recently saw a significant victory. For the first time since it was introduced in 2016, the act passed through a congressional committee. The Senate Finance Committee voted unanimously for it June 22, bringing it closer to becoming law.

The legislation, introduced by Sens. Robert P. Casey Jr. (D-Pa.) and Jerry Moran (R-Kan), would allow more than 6.1 million Americans with disabilities, including 1 million veterans, to open ABLE — which stands for “Achieving a Better Life Experience” — accounts that offer them a way to save money without losing vital federal disability benefits.

“This will remove barriers to economic independence for millions of Americans, giving people the option to open their own businesses, save for retirement, purchase the technology they need and so much more,” Casey said in a statement after the committee vote.

Kaufman pushed for the legislation as the senior manager of legislative affairs at Jewish Federations of North America. But for him, the issue is also personal.

Both he and his brother, who has a disability and lives in a group home, have ABLE accounts.

They were able to open them after the ABLE Act passed in 2014, allowing people who acquired their disability before the age of 26 to open an account. The ABLE Age Adjustment Act would extend that age to 46.

“The way the law is written is if you get diagnosed after your 26th birthday, you’re out of luck,” Kaufman said. “You step on an IED in Afghanistan, and all of a sudden you’re in a wheelchair. How are you going to pay for that?”

A person’s insurance may cover some items, such as a wheelchair, but not all the repairs for that chair or a wheelchair-accessible van or extra physical therapy, he said. “It’s so expensive to live with a disability,” he said.

He doesn’t receive Supplemental Security Income, but his brother is among the millions of disabled Americans who do, and Kaufman has been advocating for them on another issue that was recently introduced as legislation. In May, Sens. Rob Portman (R-Ohio) and Sherrod Brown (D-Ohio) introduced the Savings Penalty Elimination Act, which would allow people who receive Supplemental Security Income to increase their savings without affecting their disability benefits.

“If you are a single person on SSI, you cannot have more than $2,000 in your bank account, and if you’re married person on SSI, you cannot have more than $3,000,” Kaufman said. That amount has not been updated since the 1980s, when he was a child. “What it does is it traps people in poverty.”

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It also keeps qualified people out of the workforce. Kaufman said he has a friend who has a bachelor’s degree but is not working because she is worried her savings account will surpass $2,001 and she will lose needed disabilities services.

The act would increase the asset limit to $10,000 for a single person and $20,000 for a married couple.

Kaufman knows that most people would rather avoid thinking about the financial security issues he spends his days focused on. But he also knows the stakes, and he hopes people will keep pressure on legislators to pass these measures and more.

Fixing broken elevators is not enough. Fixing broken systems is also needed.

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