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senate Bill S. 578

Should the Five-Month Waiting Period for ALS Patients to Receive Disability Benefits be Eliminated?

Argument in favor

The current five-month waiting period before ALS patients can receive disability benefits increases financial hardship for patients and their families after receiving a devastating diagnosis. Eliminating this waiting period is the compassionate and right thing to do.

jimK's Opinion
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12/09/2020
I do not understand the reason for the delay in receiving ALS benefits. Was this time to assure that someone actually had ALS, and not some other condition? I would think that medical science has advanced enough to make a more rapid, accurate and detailed diagnosis which should eliminate the waiting period. Putting additional financial hardship associated with a delay in full coverage of social security disability benefits seems unnecessarily cruel.
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Argument opposed

ALS patients can already receive expedited disability benefits under the Social Security Compassionate Allowances program, through which cases can be decided within weeks. In light of this, there’s no need to eliminate the waiting period for SSDI benefits.

thomasjmerfeldsr's Opinion
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12/09/2020
Lou Gehrig’s Disease is widely known to cause marked tick like shaking of limbs and joints. In order to properly diagnose patients The Five Month Waiting Period is necessary. Actually it should be extended to at least one year so more in depth studies can be ran. We must not take chances w/erroneous diagnosis. Also new cure’s have recently come forward. The condition needs to be treated to make sure it meets Three Year Prognosis Requirements before issuance of Disability Benefits.
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What is Senate Bill S. 578?

This bill, known as the ALS Disability Insurance Access Act of 2019, would eliminate the five-month waiting period for Old Age, Survivors, and Disability Insurance benefits for individuals with amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig’s disease). Currently, ALS patients must wait five months after becoming disabled before their disability insurance benefit payments may begin.

If passed, this bill’s provisions would apply to disability insurance benefit applications filed after the enactment of this legislation.

Impact

ALS patients; disability benefits for ALS patients; and the current five-month waiting period for ALS patients to receive disability benefits.

Cost of Senate Bill S. 578

A CBO cost estimate is unavailable.

More Information

In-DepthSen. Sheldon Whitehouse (D-RI) reintroduced this legislation from the 115th Congress to eliminate the five-month waiting period before ALS patients can receive the Social Security Disability Insurance benefits they earned by contributing into Social Security:

“I am proud to co-sponsor this bill to eliminate the waiting period for those battling ALS. It takes tremendous courage from patients, family members, and friends to cope with an ALS diagnosis.  I hope that as a simple act of humanity we can set aside bureaucratic considerations and allow Americans who face the extraordinary blow of this diagnosis to immediately receive the benefits they have earned.”

Sen. Whitehouse’s office notes that the current five-month waiting period, which is meant to allow temporary conditions to reverse, means that some ALS patients may die before ever receiving disability benefits. This increases financial hardship for patients and their families alike.

Rep. Seth Moulton (D-MA), sponsor of this bill’s House companion, adds:

“Nobody bravely fighting Lou Gehrig’s Disease should have to wait months for benefits that will help them confront the disease because of government red tape,” Representative Moulton said. “Every American pays into Social Security with the idea that we have each other’s backs and that those benefits will become available to us when we need them—whether it is because of an ALS diagnosis, a disability or simply to help make ends meet in retirement.  This bill will help our country keep that promise.”

After this bill’s passage by the Senate on December 2, 2020, Rep. Moulton called on the House to follow the Senate’s lead:

“It is shameful that in America, we make ALS patients wait five months for benefits that are theirs by right. Many Americans with ALS die waiting for Social Security payments that could help provide them and their families with some security. I’m glad the Senate has taken action. This bill has more than 300 House cosponsors, enough to pass if it came up for a vote. What are we waiting for? ALS patients don’t have time for Congress’s political inaction.”

Passing this legislation is a major legislative priority for the Senate ALS Caucus, which was founded in 2020 to bring senators from both parties together to advocate for ALS patients and their families. Sen. Chris Coons (D-DE), a co-chair of the caucus along with Sen. Mike Braun (R-IN), says:

“Speedy access to support programs like SSDI after a diagnosis is essential – and one of the priorities we set when we launched our bipartisan caucus earlier this year. We must continue to build on this progress to make life easier for ALS patients and their loved ones.”

The ALS Foundation supports this legislation. Its President and CEO, Calaneet Balas, says:

“Over the course of a five-month waiting period, people living with ALS will have only experienced progressive loss of function and will have incurred significant expenses for care and treatment. We urge Congress to pass this legislation and remove the arbitrary five-month waiting period that creates an unfair financial burden on people whose life expectancy is so tragically abbreviated.  People with ALS have earned and should receive both Medicare and Social Security Disability Insurance benefits immediately.  They simply don’t have months to wait.” 

This legislation passed the Senate by a 96-1 vote on December 2, 2020 with the support of 67 bipartisan Senate cosponsors, including 36 Democrats, 29 Republicans, and two Independents. Its House companion, sponsored by Rep. Seth Moulton (D-MA), has 305 bipartisan House cosponsors, including 197 Democrats and 108 Republicans, and is pending in the Committee on Ways and Means.

Sen. Whitehouse and Rep. Moulton also introduced this bill in the Senate and House in the 115th Congress. Neither bill received a committee vote last Congress.

Numerous ALS patient advocacy organizations, including the ALS Foundation, Les Turner ALS Foundation, and the Muscular Dystrophy Association (MDA), support this legislation. 


Of NoteAmyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. Patients progressive lose the ability to speak, walk, and breathe. There is currently no cure for the condition. 

It is estimated that 16,000-20,000 Americans have ALS. On average, an ALS diagnosis costs over $1.4 million over the course of the disease.

There is precedent for waiving the five-month waiting period before people with ALS receive disability benefits: in 2000, recognizing ALS’ unique features, Congress passed a bipartisan bill waiving the standard two-year waiting period before ALS patients could become Medicare-eligible.

At present, ALS patients can receive expedited approval for disability benefits under the Social Security Compassionate Allowances program, through which cases can be decided within weeks. This applies to Supplemental Security Income (SSI) benefits; the five-month waiting period for Social Security disability benefits (SSDI) is unaffected by approval of SSI benefits under the compassionate allowances program.


Media:

Summary by Lorelei Yang

(Photo Credit: iStockphoto.com / designer491)

AKA

ALS Disability Insurance Access Act of 2019

Official Title

ALS Disability Insurance Access Act of 2019

bill Progress


  • Not enacted
    The President has not signed this bill
  • The house has not voted
  • The senate Passed December 2nd, 2020
    Roll Call Vote 96 Yea / 1 Nay
    IntroducedFebruary 27th, 2019

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    I do not understand the reason for the delay in receiving ALS benefits. Was this time to assure that someone actually had ALS, and not some other condition? I would think that medical science has advanced enough to make a more rapid, accurate and detailed diagnosis which should eliminate the waiting period. Putting additional financial hardship associated with a delay in full coverage of social security disability benefits seems unnecessarily cruel.
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    Yes, the 5 month waiting period may be a lifetime for an ALS patient. My question is, why does anyone with a disability have to wait? Disabilities don’t wait? Rent/mortgages don’t wait. You still have bills to pay & groceries to buy for 5 months.
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    This disease is so devastating. I watched a friend and colleague die of this. The diagnoses comes after the disease has started to have serious effects. She and her family needed help right away. No job = no insurance. Very very sad.
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    Representatives, Vote Yes on the ALS Disability Insurance Access Act of 2019. Seems easy enough. Everything seems to be lined up nicely. S. 578 the Senate version passed. We are now waiting for the House to vote. If the lede is correct the vote is there. All that is needed a President's signature. Need we say more? When will this happen days, weeks or months?
    Like (8)
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    Absolutely. ALS is nightmare enough without having some greedy bastard in the government refuse to give them their own tax dollars back in disability insurance. Any and every single thing that we can do to make things less awful should be done.
    Like (6)
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    Get rid of the five-month waiting period for any permanently disabled person to receive help.
    Like (6)
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    What is the point of "waiting"? One can never be compassionate....too soon.
    Like (6)
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    ALS does not wait and help shouldn’t either.
    Like (6)
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    Why would we want to add to someones problems by making the them wait to get help.
    Like (4)
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    Delaying support for ALS patients appears extremely cruel for someone already having to meet the challenges of the disease itself. A logical rationale just doesn't seemed provided.
    Like (4)
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    What moron decided that people with a documented ALS diagnosis must wait for 5 months to get what they have already earned? The diagnosis should be the key to getting these benefits.
    Like (4)
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    Yes but don’t stop with ALS there are more debilitating illnesses out there that do not get recognized for disability payments.
    Like (3)
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    Makes sense. Puzzled as to why the five month waiting period was applied to begin with.
    Like (3)
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    Why does this question even need to be asked? What kind of fucking morons do we have in Washington DC where this is an issue? Time to start voting all of these idiots out of office regardless of party
    Like (3)
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    Duh
    Like (3)
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    Why in the red hell should benefits to provide needed care be denied? NO...pay these people! ANYONE saying benefits should be withheld should be ashamed of themselves for playing medical expert! How ridiculous you are!
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    There is no defensible reason to delay payment for any debilitating disease. ALS especially is generally a rapidly worsening disease that results in the most unimaginably horrible death. All claims for disability should be expedited, with ALS being in a category of it's own, a doctor's diagnosis (They frequently misdiagnose it as fibromiaglgia
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    ALS is a horrible way to die. People with this diagnosis must start getting benefits as soon as diagnosed.
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    I had two very good friends that had cancer and applied for disability so they could fight the disease. They both received their disability within a month of their dying. This was after more than a year for each of them where they worked until they couldn’t get out of bed anymore just to keep a roof over their heads. They both were finally taken in by relatives that could only watch them die. There’s some sort of test for the disease. You got it you aren’t going to get over it. Give them some peace on their journey to their death. This country sucks. In Europe you get sick with terminal illness you get their disability.
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    Since ALS is a terminal disease, why should they have to wait 5 stinking months? Their situation will not improve, only worsen.
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