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America’s disability lifelines are badly eroded when we need them most

America’s disability lifelines are badly eroded when we need them most

Picture of Trudy  Lieberman
(Photo by Justin Sullivan/Getty Images)
(Photo by Justin Sullivan/Getty Images)

Thousands of poor Americans and those with disabilities are missing out on much-needed income benefits during the pandemic. The Social Security Administration recently announced a 22% decrease from January 2020 to January 2021 in the number of people receiving Supplemental Security Income, or SSI, the benefit program available to the very poorest Americans. There are no January stats yet for the number of Americans receiving Social Security disability payments (SSDI), but the annual trend is clearly down, said Kathleen Romig, a senior policy analyst at the Center for Budget and Policy Priorities.

The decline in disability applications is more than Social Security actuaries expected before the pandemic, Romig said, noting that SSDI enrollment has been declining for years, and there has been under-enrollment in SSI, especially among kids with mental illness. “It’s really significant, and the pandemic has made it worse.”

In January, the Social Security Administration reported that 37,700 people began receiving means-tested SSI benefits, the lowest number since the early 1980s. Means-tested just means that a person’s income determines whether they get benefits. Similarly, the number of people who began receiving Social Security disability insurance benefits (SSDI) in 2020 was the lowest since 2001.

About 8 million Americans receive SSI, which is a means-tested benefit for the very poorest Americans. Another 8 million get Social Security disability benefits, which is an entitlement people pay for with taxes withheld during their working years. People qualify for both programs, though, only if they meet very strict requirements for being disabled. The chief difference between the two programs is that one is means tested and the other is an entitlement paid for by an individual’s payroll taxes. (The million or so elderly on SSI don’t have to meet the medical criteria.) Think of the disability programs as the lesser-known branch of Social Security’s family of benefits, which also include survivors’ benefits and the retirement benefits millions of seniors depend on for their income.

The drop in the number of new recipients for both programs comes in the midst of a devastating public health crisis that has cost hundreds of thousands of jobs, produced unimaginably long food lines, triggered countless family disruptions, and inflicted nearly a half million deaths, many breadwinners among them. All of which seems to suggest many families are in need of more help. But the pandemic combined with public indifference to people with disabilities, a lack of media attention, and punitive government policies initiated in both Democratic and Republican administrations have conspired to give these income lifelines low visibility and a lack of public acceptance when Americans need them the most.

Historically, it has been difficult for Americans to qualify for disability benefits, with politicians on both sides of the aisle enacting rules and restrictions to keep the programs small under the mistaken belief these programs are riddled with fraud and are disincentives to work. According to the Center for Budget and Policy Priorities, 62% of SSI applications are denied for medical or technical reasons. Only 38% are approved or allowed reconsideration or an appeal to an administrative law judge. The stats are similar for SSDI with 66% of applications denied and 34% accepted or allowed reconsideration or appeal.

The odds of enrolling in these programs aren’t great, and those who do make it through the hoops hardly get rich. The highest benefit for an SSI recipient this year is $794 a month, but the average is only $580. The average SSDI benefit is higher, $1,278.

“It’s a very untrusting system,” says Jonathan Stein, a former legal aid lawyer and general counsel at Community Legal Services of Philadelphia. “More people should be receiving disability benefits but for Social Security’s punitive policies to deny people and a too-harsh means test and overly bureaucratic practices with lots of red tape and paper documentation.” All this has been made worse by the pandemic. Stein added. “We have an ongoing crisis of great numbers of people not even getting through the door to apply,” Stein said. “A quarter of a million disabled and elderly people have been effectively denied SSI benefits in the past year because they have faced insurmountable application barriers.”

Perhaps the biggest barrier has been the closure of 1,200 Social Security offices around the country, which has resulted in some 230,000 low-income and disabled Americans denied benefits, Stein said. Before the offices closed, would-be recipients found much-needed help filling out lengthy complex forms required for SSI and SSDI programs. There are no online applications for those seeking SSI, which means some of the most vulnerable applicants struggle to get telephone assistance, or they give up on applying. “The application process has fallen apart during the pandemic, and the result is that large numbers of people have been denied this critical lifeline,” Stein told me.

While theoretically people can call a toll-free 800 number to get phone help from Social Security personnel, that’s not a practical solution for elderly and disabled people facing the challenges of poverty. Although some of those people seeking benefits may have cell phones, they sometimes have plans with limited minutes that can be used up just waiting to get a Social Security employee on the line, let alone walking them through a 23-page SSI application seeking detailed information about income, assets, and who makes up their household.

“We have an ongoing crisis of great numbers of people not even getting through the door to apply. A quarter of a million disabled and elderly people have been effectively denied SSI benefits in the past year because they have faced insurmountable application barriers.” —  Jonathan Stein, Community Legal Services of Philadelphia

As difficult as today’s pandemic-induced troubles are for would-be enrollees and beneficiaries in those programs, advocates say such barriers created by the pandemic are just the latest in a string of actions taken by past administrations making life harder for people with disabilities to receive benefits or keep the ones they do manage to get. Stein points to the weakening of a long-standing regulation during the Obama administration that had given greater weight to the medical examinations done by an applicant’s own doctor in determining the severity of their disabilities. But, he says, the importance of the “treating physician rule was substantially deflated.” Instead, greater weight is now given to a consulting doctor’s more cursory evaluation which often lasts less than half an hour, and is “extremely problematic” for people with mental disorders. “The change,” he added, “was made to reduce award allowances for both SSDI and SSI.” In the Trump years, the Social Security Administration ruled that the inability to speak English is no longer relevant in assessing whether someone can work in the U.S. economy, and that it is not a barrier to working. The ability to speak English for decades was always considered relevant along with other job-related factors. This rule, too, has the effect of keeping people off the disability rolls because the government decided that a non-English speaking person applying for disability could indeed get a job, Stein says.

Being on either program is no picnic. For people receiving SSI, resource limits — the maximum savings they can have — are paltry — $2,000 for an individual and $3,000 for a couple. If on the first day of any month, they have even $1 over the limit, they lose benefits until their resources drop low enough again. Congress has not adjusted the limits in more than 30 years and then it was only a “minimal, adjustment” according to Nancy Altman, who heads the advocacy group Social Security Works and is a member of Social Security’s Advisory Board. Although Congress noted in 1972 that its goal in enacting SSI was that the aged, blind, and disabled people would “no longer have to subsist on below-poverty-level incomes,” that promise has fallen way short.

Those on SSDI have their challenges, too. Many, like 51-year-old Peter Morley, are severely disabled and shudder every time new medical reviews are proposed for the disability program that could limit benefits or make them harder to get. He has been disabled since 2007, when he fell off a ladder in his Manhattan apartment, injuring his spine. His monthly SSDI benefit is now $1,396. Morley, who had been working as a sales and marketing research analyst for a broadcasting company, subsequently had 10 surgeries, including four on is spine. Three were failed spinal fusions, and the last one in 2018 caused irreversible nerve damage, he said. His list of ailments is long, including kidney cancer, a melanoma, chronic neuropathic pain, and degenerative disc disease. His list of medications is long, too. One of the hardest things about being on SSDI has been the periodic medical reviews, Morley told me. “The continuing disability reviews are anxiety inducing.” Not only do recipients incur out-of-pocket expenses from doctors charging hundreds of dollars to gather voluminous medical records, but they fear getting kicked off the program and losing the Medicare benefits it took so long to get. (People receiving SSDI are entitled to Medicare benefits but only after a two-year waiting period.)

“The government says you meet the definition for disability but we’re not going to give you health insurance. It’s very cruel,” says Kate Lang, a senior staff attorney with the advocacy group Justice in Aging. She adds that some people may be able to get Medicaid in their state or qualify for a subsidy under the Affordable Care Act, “but many end up without any health insurance coverage while they are waiting.”

Those on SSI, she says, automatically qualify for Medicaid, but in nine states the programs are not automatically linked, potentially presenting sign-up problems for recipients.

Addressing the structural and fairness issues inherent in Social Security’s disability and SSI programs must take on a new urgency because of the long-term health problems suffered by the so-called COVID-19 long-haulers, who continue to have lasting symptoms from the disease. The Center for Post-COVID Care at New York City’s Mt. Sinai Health System estimates that 10% to 30% of all COVID-19 patients will suffer long-term health consequences from the illness, including digestive problems, serious fatigue, shortness of breath, a racing heart, type 1 diabetes, and “brain fog,” which makes it hard to concentrate and go back to work.

What if some of these patients are never able to return to work, the measure of self worth in America? My bet is that many of the so-called long-haulers will eventually turn to the hard-to-get safety net of SSI and SSDI, as inadequate as those programs may be. Maybe then policymakers will be forced to take a long hard look at the country’s disability income system and the health care that goes with it. Maybe then they’ll decide it’s not too early the save the long-haul COVID-19 patients from the forlorn and desperate existence they might otherwise face. They include patients like Kaitlin Denis, a 30-year woman, suffering for nearly a year, who was profiled this week in The Washington Post. She is entering her second year of dealing with COVID-19 symptoms and no longer able to work.

In the meantime, this should be an ongoing story for local reporters. Go out and find people in your communities who might qualify for either SSDI or SSI. Find the Peter Morleys in your area. What do they do for food? What do they do for health care? Where do the go for help when so many vital services like Social Security offices remain shuttered? How do they manage the medical reviews of their cases? Follow them through their day or week and document the struggles of the many Americans whose stories have yet to be told.

Veteran health care journalist Trudy Lieberman is a contributing editor at the Center for Health Journalism Digital and a regular contributor to the Remaking Health Care column.

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