Anita Baron first realized something was wrong in August 2018, when she started dolol. Her dentist gave him a problem with her jaws. Then her speech slowed down. She was able to keep her company, which offers financing for small businesses, going, but work became increasingly difficult as her speech got worse. Finally, nine months later, four neurologists and countless later tests, Baron, now 66, was diagnosed: amyotrophic lateral sclerosis.
ALS, often referred to as Lou Gehrig’s disease after the founding of the first New York Yankees in 1941, destroys motor neurons, causing people to lose control of their organs, speech and , ultimately, the ability to breathe. It is usually fatal in two to five years.
People with ALS often have to give up work and sometimes their spouse also provides care, leaving families in financial distress. A ten-year campaign by advocates highlighting this situation took effect last month when Congress passed a bill opening earlier key support programs for ALS patients.
In late December, President Donald Trump signed the bill into law. It eliminates ALS patients the five-month waiting period necessary to start receiving benefits under the Social Security Disability Insurance program, which replaces at least part of the income of a disabled employee. Getting SSDI also gives these patients instant access to Medicare health coverage.
Advocacy groups note that the Social Security Administration still needs to establish procedures for enforcing the law, before patients can see the benefits.
The Muscular Dystrophy Association, an umbrella group for people with 43 neuromuscular conditions, partnered with other ALS groups to support the bill to eliminate SSDI waiting time.
“Hopefully it can serve as a model for other situations that may be in the same situation,” said Brittany Johnson Hernandez, senior director of policy and advocacy at MDA.
In the weeks before the bill passed, Sen. Mike Lee (R-Utah) sought to expand the scope of the legislation to include other conditions. He promised to continue working on legislation to eliminate SSDI waiting times for additional diseases that meet certain criteria, including those with no known treatment and reduced life expectancy. than five years.
Eliminating SSDI waiting time has been a high priority for ALS applicants. There is no simple, single test or scan to confirm that someone has ALS, although symptoms can increase rapidly. By the time people are finally diagnosed, they are often severely disabled and unable to function. Waiting five months longer for financial support can be a burden, depending on patients and families.
“Five months may seem like a short time, but for someone with ALS it’s important,” said Danielle Carnival, Head of I Am ALS, an advocacy group. “It’s a huge win and will make a big difference to people right away.”
Eligibility for SSDI benefits usually requires people to have worked for about a quarter of their adult life at work through which they paid Social Security taxes. Benefits are based on lifelong earning; the average monthly gain of SSDI was $ 1,259 in June 2020, according to the Social Security Administration. (The average retirement gain that month was $ 1,514.)
The SSDI waiting period was intended to ensure that the program would only cater for people who expected applications that lasted at least a year, said Ted Norwood, chief legal officer at Integrated Benefits Inc. in Jefferson City, Missouri, which represents SSDI candidates. But it is not necessary, he said, because disability rules now require people to have a situation that keeps them out of work for at least a year or they die.
“The five-month waiting period serves no purpose in terms of raising issues,” Norwood said.
The existing federal law also made specific health provisions for people with ALS and end-stage renal disease. Most people with a disability have to wait two years to qualify for Medicare, but people with either of these two diseases can qualify sooner. ALS patients are eligible as soon as SSDI benefits begin.
The new law could have made a big difference to Baron, who lives in Pikesville, Maryland. She and her husband, who works part-time at a funeral home, did not have perfect health insurance when she became ill. They were only enrolled in a supplementary medical plan that paid limited cash benefits.
By the time she was discovered with her SSDI and Medicare coming through, the Baron and her husband had issued their credit cards, stolen $ 10,000 from the IRA and gone to their family for cash. . They were $ 13,000 in debt. They sold their house and moved into a condo to save on costs.
“It simply came to our notice then [people] get worse and they can work, they have instant access to SSDI, “said Baron.
Like Sen Lee, some patient advocates say the accommodations on disability benefits and Medicare made for patients with ALS should be extended to others with similar conditions.
The Social Security Administration has identified 242 situations that meet the organization’s standards for eligibility for disability benefits and are quick to approve benefits.
Once approved, people with these conditions have to wait five months before receiving any money. Now, under the new law, people with ALS can avoid the waiting period, although no-one else on the “compassionate allowances” list can.
Breast cancer advocates hope for similar accommodations for people with metastatic breast cancer. Legislation introduced in the House and Senate in 2019 would have eliminated SSDI waiting time for this group, but it has not passed.
Dealing with the problem one condition at a time does not make sense, others argue.
“Can you imagine, one by one, people with these conditions trying to find people in the House and Senate to support the bill?” Said Carol Harnett, president of the Council for Awareness. Disability, which represents disability insurers.
Deb McQueen-Quinn believes it would be good if the new law sets a precedent for eliminating the SSDI waiting time. At 55, McQueen-Quinn has been living with ALS since 2009, far longer than most.
Formerly a resource store manager, she now uses a full-time wheelchair. She knows the disease hole very well. ALS runs in her family, and has tracked several family members, including her sister, brother and cousin dying about it.
Her sister, a former quality control engineer, was diagnosed in 2006 and died the following year, a week before she received her first SSDI payment.
McQueen-Quinn, who lives in Wellsville, New York, has two children in her 30s with her husband. Her son, 33, carries a family genetic mutation that leads to ALS. So far it has not improved symptoms. But she fought for people like her son and other family members for the new law.
“Now that we have set the desert, I am sure you will see a lot of other diseases going after this,” she said.
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