Anita Baron first noticed something was wrong when she started drooling in August 2018. Your dentist has identified a problem with your jaw. Then her speech became blurry. She managed to keep her small business funding company going, but the job got harder and harder as her language deteriorated. Nine months, four neurologists and countless tests later, the 66-year-old Baron was diagnosed with amyotrophic lateral sclerosis.
ALS, often referred to as Lou Gehrig’s disease after the first New York Yankees baseman died from it in 1941, destroys motor neurons and causes people to lose control of their limbs, speech and ultimately their ability to breathe. It’s usually fatal in two to five years.
People with ALS often have to quit their jobs, and sometimes their spouses, to provide for care, which puts families in financial need. A decade-long campaign of advocates highlighting this situation won last month when Congress passed a law opening important support programs for ALS patients early.
At the end of December, then-President Donald Trump signed the law. ALS patients do not have to wait five months to receive benefits under the Disabled Social Insurance Program, which replaces at least part of a disabled worker’s income. By obtaining SSDI, these patients also get instant access to Medicare health insurance.
Stakeholders warn that the Social Security Administration has yet to establish procedures to implement the law before patients can see the benefits.
The Muscular Dystrophy Association, an umbrella organization for people with 43 neuromuscular diseases, has partnered with other ALS groups to support the bill to eliminate SSDI latency.
“We hope that it can serve as a model for other conditions that may be similar,” said Brittany Johnson Hernandez, senior director of policy and advocacy at MDA.
In the weeks leading up to the bill’s passage, Senator Mike Lee, R-Utah, attempted to extend the scope of the bill to other terms. He pledged to continue working on legislation to eliminate the SSDI’s waiting time for additional diseases that meet certain criteria, including those with no known cure and a life expectancy of less than five years.
Eliminating the SSDI latency is a top priority for ALS advocates. There is no simple, individual test or scan to confirm that someone has ALS, although symptoms can escalate quickly. When people finally get the diagnosis, they are often severely disabled and unable to work. According to patients and families, waiting five months longer for financial assistance can be a burden.
“Five months may seem like a short period of time, but it’s important for someone with ALS,” said Danielle Carnival, CEO of I Am ALS, an advocacy group. “It’s a big win and it will instantly make a huge difference to people.”
In general, to be eligible for SSDI benefits, people must have worked for about a quarter of their adult lives in jobs through which they have paid social security taxes. The benefits are based on lifetime income. According to the Social Security Agency, the average monthly SSDI benefit in June 2020 was $ 1,259. (The median retirement pension for that month was $ 1,514.)
The SSDI waiting period should ensure that the program only serves those who are expected to have entitlements that last at least a year, Ted Norwood, chief legal officer at Integrated Benefits Inc. in Jefferson City, Missouri, told the SSDI -Applicant represents. But it’s not necessary, he added, because disability rules now dictate that people have an illness that will leave them unemployed or death for at least a year.
“The five month wait is no use sorting out cases,” said Norwood.
The existing federal law also provided special health regulations for people with ALS and end-stage kidney disease. Most people with disabilities have to wait two years to be eligible for Medicare, but people with either of these two diseases can qualify sooner. ALS patients are eligible once SSDI services begin.
The new law could have made a huge difference to Baron, who lives in Pikesville, Maryland. She and her husband, who works part-time at a funeral home, did not have comprehensive health insurance when she fell ill. They were only placed on a supplemental medical plan that paid out limited cash benefits.
By the time she was diagnosed and her SSDI and Medicare got through, Baron and her husband had used up their credit cards, searched $ 10,000 from their IRA, and gone to their family for money. They were in debt of $ 13,000. They sold their house and moved into an apartment to save money.
“It is imperative that as [people] are getting weaker and weaker and cannot work that they have immediate access to SSDI, ”said Baron.
Like Sen. Lee, Some patient advocates say that disability benefits and Medicare arrangements for patients with ALS should be expanded to include others with similarly difficult-to-treat conditions.
The Social Security Agency has identified 242 conditions that meet the agency’s standards for access to disability benefits and are accelerated for approval of benefits.
Once approved, people with these conditions will have to wait five months before receiving any money. Under the new law, people with ALS can skip the waiting period, although no one else on the “compassionate allowance” list can.
Breast cancer advocates hope for similar adaptations for people with metastatic breast cancer. Legislation introduced in the House and Senate in 2019 would have eliminated the SSDI waiting period for this group, but it was not passed.
Addressing the problem individually makes no sense, others argue.
“Can you imagine people with these conditions taking turns trying to find people in the House and in the Senate to stand up for the bill?” said Carol Harnett, president of the Council for Disability Awareness, which represents disability insurers.
Deb McQueen-Quinn thinks it would be good for the new law to set a precedent for eliminating SSDI latency. At 55, McQueen-Quinn has lived with ALS since 2009, much longer than most.
As a former convenience store manager, she now uses a wheelchair all day. She knows the toll of disease all too well. ALS runs in her family, and she has observed several family members, including her sister, brother, and a cousin, die from it.
Her sister, a former quality control engineer, was diagnosed in 2006 and died the following year, a week before she would have received her first SSDI payment.
McQueen-Quinn, who lives in Wellsville, New York with her husband, has two children in their thirties. Her 33-year-old son carries the familial genetic mutation that leads to ALS. So far he has not developed any symptoms. But for people like her son and other family members, she fought for the new law.
“Now that we have set the precedent, many other diseases are sure to emerge,” she said.
Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation that is not affiliated with Kaiser Permanente.
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