A $600 check would go a long way for Janet Clendenin.

The costs of the sugar-free foods she buys to manage her diabetes have risen sharply in South Lake Tahoe during the pandemic, Clendenin said. She usually has to criss-cross the picturesque region by bus to find discounts at Dollar Tree, Grocery Outlet and Walmart.

So when she learned about Gov. Gavin Newsom’s plan to send $600 payments to the lowest income Californians in February, Clendenin felt relief.

Then came frustration.

Clendenin scoured the news for details on eligibility. She learned that she could have qualified if she worked in 2020. But a constellation of diabetes, arthritis, migraines, back injuries and nerve pain made work impossible about six years ago. Given her disabilities, she could also have qualified if only she received Supplemental Security Income, a federal safety-net program for elderly, blind and disabled people with limited income.

But nowhere could Clendenin find mention of Social Security Disability Insurance, the other main federal program for people with disabilities, which sends her $1,056 a month.

“I couldn’t believe that we were left out,” said Clendenin. “How unfair is that?”

It’s a sentiment shared by many Californians on federal disability insurance, who have asked why Newsom’s stimulus payments skipped them over.

While California lawmakers automatically sent checks to 1.2 million people who receive SSI, the 1.2 million Californians on SSDI only qualify if they had income from work in 2020. But that’s rare — research shows that fewer than one in five SSDI recipients work during a typical year, often because they are limited by their disabilities or risk losing their benefits if they work too much.

Disability advocates say it’s the latest example of the state abandoning some of its most vulnerable residents during the pandemic, after having directed medical health providers to ration COVID-19 care to elderly and less healthy people last spring and deprioritize people with disabilities for vaccines earlier this year — both policies that were reversed after considerable outcry.

“Overall the state has been uneven in how it’s helped people with disabilities navigate the pandemic,” said Andrew Imparato, executive director of Disability Rights California. “A lot of people with disabilities have had to fend for themselves.”

Department of Finance spokesperson H.D. Palmer cites logistical challenges. California maintains an up-to-date list of residents who get SSI because the state supplements the federal benefit by a few hundred dollars, but doesn’t have access to the same information for SSDI.

“Trying to include SSDI… would be a time-consuming and laborious process with the feds that doesn’t line up with the intent of (the Golden State Stimulus) — to get immediate relief to Californians with whom we have an existing relationship,” Palmer wrote in an email.

‘Make hard decisions quickly’

The Newsom administration may have also based the decision on a consideration of need.

California’s SSI recipients live in poverty by definition. Elderly, blind and disabled people can only qualify if they have extremely low income and wealth, and they typically receive just $954.72 per month.

On the other hand, people with sufficient work history can qualify for monthly SSDI payments based on their former wages, with the average national benefit at $1,280 per month.

Still, California’s SSDI recipients often face steep financial challenges. They are more than twice as likely to live in poverty compared to the rest of the population, according to calculations by Andrew Houtenville, an economist at the Institute on Disability at the University of New Hampshire. And people with disabilities often have to cover expensive medical equipment, appointments with specialists and drugs out-of-pocket.

Imparato acknowledged that the state was “trying to make hard decisions quickly” but “including everyone on SSDI probably would have been a more equitable thing to do than excluding them because you don’t have access to their program or because it’s not a means-tested program.”

There are some signs that lawmakers could still include SSDI recipients. Newsom’s proposed expansion of the Golden State Stimulus still requires approval from state legislators. Though they passed a placeholder budget to meet a June 15 deadline, state lawmakers continue to disagree with Newsom over how much surplus money the state has at its disposal and how to spend it.

According to a legislative staffer familiar with ongoing budget negotiations, some members of the Legislature are pushing the Newsom administration to expand eligibility for the Golden State Stimulus payments to Californians on SSDI, among other groups.

The evolution of the Golden State Stimulus

Eligibility for Newsom’s Golden State Stimulus has gone through several twists and turns. In January, Gov. Gavin Newsom announced a $2.4 billion plan to send $600 Golden State Stimulus checks to approximately 4 million low-income workers.

By February, with the state’s revenue estimates swelling, the Legislature negotiated and approved an even more generous $3.8 billion stimulus payment plan that included extra aid for undocumented workers.

Under this plan, the state also sent $600 payments to certain Californians living in poverty — regardless of whether they work. That included very low-income families with children enrolled in CalWorks, as well as recipients of SSI or the state’s alternative for some immigrant groups, known as the Cash Assistance Program for Immigrants.

It took Charis Hill several days of searching online and contacting their state assemblymember to discover that they did not automatically qualify. A Sacramento-based disability activist who lives on $1,027 per month from SSDI, Hill eventually deduced that they could qualify not because they were disabled, but rather because they had done freelance writing and speaking last year.

Hill would have to file taxes, something they hadn’t done in years because their earned income is far below the filing requirement. They decided it was worth it. Their expenses have jumped during the pandemic, especially as they’ve opted for grocery deliveries instead of shopping in stores because they are immunocompromised.

Hill said that, unlike many disabled people, they were fortunate to have internet access and a friend who could help them file their taxes. They were lucky to be able to work last year despite experiencing constant pain and fatigue from an inflammatory condition called axial spondyloarthritis. But, they said, it’s wrong that the Golden State Stimulus program is “basing a disabled person’s value on their ability to work.”

When Newsom proposed a second round of Golden State stimulus payments aimed at California’s middle class in May, Hill was hopeful that other SSDI recipients would finally be able to benefit, too. However, as the details of Newsom’s plan emerged, there was still no mention of SSDI recipients.

“It’s really hard to see and read coverage of Newsom touting how great this is for middle-class people,” said Hill, when people with disabilities are “some of the most impoverished people in the whole country.”

Financial burden can fall to caretakers

Sydney Chandler manages the finances and healthcare of her cousin, Chris Batiste, who is paralyzed. Batiste breathes through an apparatus and communicates with Chandler through a laptop, blinks and head movements.

Chandler, who is a Los Angeles-based writer, said she was livid to learn that SSDI recipients were left out of the state stimulus. To her, it was just another obstacle in the arbitrary and bureaucratic maze that people with disabilities face in trying to attain a liveable income.

Caretakers often carry a significant financial burden. Batiste receives $975 per month in SSDI, and Chandler said she contributes over $1,000 more each month to help cover his rent and full-time nursing.

“If it wasn’t for me, he would be one of the homeless,” Chandler said, “and you’re telling me that you couldn’t set up a portal for SSDI (recipients) to input their information?”

Jackie Botts is a reporter with CalMatters. This article is part of the California Divide, a collaboration among newsrooms examining income inequality and economic survival in California.