Editor’s Note: Rebecca Cokley is the director of the Disability Justice Initiative at the Center for American Progress. She served at the US Department of Education, US Department of Health and Human Services, the National Council on Disability and the White House during the Obama administration. The views expressed here are solely those of the author. Read more opinion on CNN.
Disability is not a static condition, in most cases. Someone may be able to take their child to the park one day, and the next be unable to get out of bed. Conditions are long-lasting, but may also be sporadic in nature, with flares that vary in their length and severity.
A number of government benefits are means tested, meaning the eligibility for that program may be tied to how much money an individual or a family earns. Some programs, like the Social Security Disability Insurance (SSDI) program, provide benefits that are specifically tied, by definition, to an individual’s inability to work due to a disability. SSDI is intended to supplement what would be that individual’s income.
To an uninformed outsider’s perspective, it may seem like people who currently receive benefits like SSDI are lazy or are just not trying hard enough to work. It’s ignorant suppositions like this that seem to be informing the Social Security Administration’s latest attack on the benefits that many people with disabilities and their families depend on to survive.
The Social Security Administration (SSA) announced back in November a notice of proposed rulemaking to change the way that disability reviews are conducted for the Supplemental Security Income program (SSI) and the Social Security Disability Insurance program. It targets, among others, those seeking benefits for chronic conditions that flare unpredictably, like Crohn’s disease or irritable bowel disease. It would also include children, individuals with mental illnesses and people with eating disorders, leukemia and HIV.
The changes could affect millions of people and households and make it significantly more difficult for those who currently have benefits, over 10 million people, to maintain them. The agency has a comment period that has been extended to January 31.
SSA is proposing creating a new category under its existing Continuing Disability Reviews (CDRs) system, which is designed to ensure that people who receive benefits need those benefits due to a disability that affects their ability to work. CDRs are typically handled via a set of forms that need to be mailed in or a full medical review. A review requires significant documentation as well as a physical exam by doctors contracting with SSA to determine if a person’s disability has in fact improved.
The frequency with which a beneficiary is reviewed can vary depending on the severity of the person’s condition and the likelihood that an individual would be able to work with said diagnosis.
There are three categories that are used: “medical improvement expected” (varies between once every six months and once every 18 months), “medical improvement possible” (once every three years) and “medical improvement not expected” (once every seven years.)
But the proposed rule introduces a new category, which would be called “medical improvement likely,” and would be subject to review every two years.
The category will include about 4.4 million who are already in the Social Security system, as outlined in the proposed rule would also include those between 50-65 who live with a combination of different disabilities and chronic illnesses that make it extremely difficult to work, and people with targeted disease diagnoses, such as cancer survivors and transplant recipients.
Each of the conditions listed can vary in terms of their severity. For every story of someone “overcoming” their illness or disability, there are numerous stories of people who must live with lifelong symptoms and side effects of treatments that could make it significantly difficult to maintain consistent employment.
What this proposed change would do is continue to punish the disability community and people in poverty.
The rule would make the CDR process so burdensome with its frequency and layers of bureaucracy that people will either be disqualified, or fall out of the process due to its difficulty.
It is the equivalent of having an IRS audit, on your health, that previously would take place every five to seven years, now on a two-year basis.
For people in this new category who already have significant health impairments that are not likely to improve, and /or that can flare, the fact that the slightest improvement at all, whether a temporary fluke or a legitimate improvement, could trigger a CDR is extremely scary for people.
It requires them to pull all their medical paperwork together, and get it updated to demonstrate that they still need benefits. For many, this requires going to specialists, getting lab work or other tests that are required to demonstrate evidence of diagnosis.
For those on limited incomes, as most people on SSI and SSDI are, it may require increased transportation costs, or costs associated with procuring copies of medical files. Having to do this every two years will be expensive for folks already living at the margins.
What’s more, as it is, Social Security does not have the bandwidth to process existing applications, with 10,000 people dying a year waiting for approval. This process is likely to be strung out even more, with an additional 2.6 million reviews to conduct over the next 10 years, as stated in the proposed rule.
The new category review is expected to come in two forms, one as a postcard, and one as a complex 15-page document with essay questions that would require an individual to maintain a robust and extremely detailed set of personal medical records.
It is important to note that this form will be only available in English, as per a previous Notice of Proposed Rulemaking. So those people for whom English is a second language and had previously applied in the existing categories using a form that was available in their native tongue, this would no longer be the case.
Furthermore, individuals who do not have consistent housing or medical care are significantly less likely to have access to the type of paperwork because they are less likely to have a secure, dry place to maintain paper records and are less likely to receive the regular and specialized medical care required to complete this form accurately.
This type of rollback has been tried before, nearly to disastrous effect. The Reagan administration attempted something similar in the 1980s, stripping up to 200,000 people of their disability benefits by altering the review process which disproportionately impacted people with mental illness.
The effect it had on disabled individuals and their families resulted in outrage from governors, and both sides of the aisle coming together for a vote of 410-1 in the House of Representatives to ease reviews and restore benefits. New legislation was passed that established the current criteria.
The new rule being considered was proposed after OMB director Mick Mulvaney said no one would lose the value of their current benefits and after Trump pledged as a candidate to not cutting Social Security benefits – but they went back on those pledges. The Trump administration has already enacted three rounds of cuts and rollbacks on nutrition programs, and this is a continuation of a targeted strategy whose impact is to shame families on public benefits.
SSA, in defense of the proposed change, claims that families have better income outcomes when a child’s benefits are canceled and parents return to work. While this may be true, telling a parent that their time is better spent working than caring for a seriously ill child is just cruel.
In the end, it is disabled people and families who will be hurt. Again.