How federal rules make it impossible for people with disabilities to save for future
OAKLAND, Calif. - The most fortunate people to weather the pandemic were those with savings and high paying jobs, for whom working from home provided a safe way to maintain their income, and perhaps even save money.
In fact, many of the highest earners saved more money when the economy was more or less shut down during the depths of the pandemic in 2020. Americans in the top 20% of earners built up their reserves with excess savings last year while the lower 60% of Americans burned through much of their savings, according to a study.
While saving for the future seems like an obvious goal for anyone's financial well-being, there is actually a huge, but marginalized group who find that they are punished for setting aside even a modest rainy day fund.
The $2,000 conundrum
There are 10 million Americans with disabilities who would lose their government benefits if they keep just $2,000 in a bank account. That is the maximum amount a person can have in the bank before the federal government rules they are no longer eligible for Supplemental Security Income.
The cutoff makes preparing for an emergency, and even regular expenses, impossible. The $2,000 limit makes it tough to cover a month's rent in much of the Bay Area or repairs for a busted car.
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SSI assists people with disabilities under 65, or people over 65 who don’t have access to resources or assets. The $2,000 asset limit hasn’t been updated since 1989, and that means that for over 30 years, as the cost of living and inflation have risen, the amount you can save has not. Based on federal inflation data, $2,000 in 1989 is the equivalent of $4,368 in June 2021.
Some people who collect SSI work part-time, others cannot work at all. They describe the SSI rules as a trap that keeps them in poverty.
Saving for future on SSI
Saida Mahoney, who lives in Oakland and has a disability, said that as a 24 year old woman, not being able to properly save for her future is burdensome.
"It’s challenging," she said. "There's nothing much you can do with that one at all."
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She said that she wishes that there were more robust programs for young disabled adults in their 20s and 30s to get off their feet.
While one program, called CalABLE, allows SSI recipients to save $15,000 per year, only individuals whose disabilities started before age 26 are eligible.
In the Bay Area, the cost of living makes it nearly impossible to get by using SSI benefits, Mahoney said. She works part-time for Amazon, and said that she is very careful to watch her account and make sure it doesn’t go over $2,000.
Aleyda Toruno, a project director at Disability Rights California, works with people navigating disability benefits and Medicare, who are transitioning to work. She said that the way the benefits are structured make it incredibly difficult for people to transition from using the benefits to going to work.
"If you needed to buy a car, for example, maybe to get to work, maybe it's a good paying job, and you can save some money for a rainy day, when you're not able to work--that just virtually makes it impossible to stay on these programs," Toruno said.
Domino effect on other programs
Eileen Crumm, the executive director of Family Resource Navigators in Berkeley, said that not only is SSI the chief source of income for many adults with disabilities, it’s the gateway to many other programs, like Medi-Cal, the state Medicaid program.
Out of Medi-Cal, another program called In-Home Supportive Services (IHSS) provides home health care and support that helps people with disabilities to live independently.
"If you don't get SSI, and you don't get Medi-Cal, you don't get a personal care aide," Crumm said. "So it can be really difficult."
For people with disabilities who need 10, 15 or 24-hour support, the costs can be high. "And that's not something covered by general insurance," Crumm said. "So it is seen as a major barrier for adults with disabilities to get work."
Although SSI allows single people to have a home and one car, people using SSI as their only income would need a great deal of luck to repair or replace either of these on such a limited income.
Scraping by on a stipend
That’s the spot Charis Hill, who uses a different benefit called SSDI, is currently in.
Hill, a disability advocate and freelance writer who uses they/them pronouns, has a monthly stipend $1,026, which is barely enough to scrape by in Sacramento, where they live. And although SSDI doesn’t have asset limits, Hill still faces the $2,000 limit for their Medi-Cal healthcare.
If Hill saves over $2,000, they get bumped onto a cost-sharing health plan, which is over $600 per month. Hill can’t afford to spend over half of their income on healthcare.
"I would go bankrupt in the first month," Hill said.
Hill feels lucky to be a homeowner, but due to asset limits, cannot save any money to pay for repairs on the house.
"I have termites that I can't treat; I can't pay thousands of dollars to treat the termites that are literally tearing my house apart slowly," Hill said. "I don't have enough insulation, so it affects my heating and cooling costs."
Hill said that the house gives them a level of financial stability and permanent housing, but that keeping the house in a livable condition is impossible without being able to save money.
"This system sort of keeps me where I am; I don't have autonomy to move up," they said.
The potential loss of healthcare, income and independence takes a substantial toll on many disabled folks, Hill said.
"We're always being surveilled," Hill said. "We don't really have freedom of making our situation better. We have to report our finances, we have to report whether we're living with someone, whether we bought a piece of jewelry that counted as valuable. It's hard to live that way."
There may be some hope on the horizon for SSI recipients, whose benefits have not seen a cost of living or inflation update in decades. Democrats are trying to increase benefits as part of the budget reconciliation package, and also update asset limits.
Caroline Hart is a digital reporter and producer with KTVU. She covers inequality, the economy and more. She can be reached at email@example.com.