[Congressional Record Volume 166, Number 207 (Tuesday, December 8, 2020)]
[House]
[Pages H6988-H6991]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
ALS DISABILITY INSURANCE ACCESS ACT OF 2019
Mr. LARSON of Connecticut. Madam Speaker, I move to suspend the rules
and pass the bill (S. 578) to amend title II of the Social Security Act
to eliminate the five-month waiting period for disability insurance
benefits under such title for individuals with amyotrophic lateral
sclerosis.
The Clerk read the title of the bill.
The text of the bill is as follows:
S. 578
Be it enacted by the Senate and House of Representatives of
the United States of America in Congress assembled,
SECTION 1. SHORT TITLE.
This Act may be cited as the ``ALS Disability Insurance
Access Act of 2019''.
SEC. 2. ELIMINATION OF WAITING PERIOD FOR SOCIAL SECURITY
DISABILITY INSURANCE BENEFITS FOR DISABLED
INDIVIDUALS WITH AMYOTROPHIC LATERAL SCLEROSIS
(ALS).
(a) In General.--Section 223(a)(1) of the Social Security
Act (42 U.S.C. 423(a)(1)) is amended in the matter following
subparagraph (E) by striking ``or (ii)'' and inserting ``(ii)
in the case of an individual who has been medically
determined to have amyotrophic lateral sclerosis, for each
month beginning with the first month during all of which the
individual is under a disability and in which the individual
becomes entitled to such insurance benefits, or (iii)''.
(b) Effective Date.--The amendment made by this section
shall apply with respect to applications for disability
insurance benefits filed after the date of the enactment of
this Act.
The SPEAKER pro tempore. Pursuant to the rule, the gentleman from
Connecticut (Mr. Larson) and the gentleman from New York (Mr. Reed)
each will control 20 minutes.
The Chair recognizes the gentleman from Connecticut.
{time} 1500
General Leave
Mr. LARSON of Connecticut. Madam Speaker, I ask unanimous consent
that all Members have 5 legislative days to revise and extend their
remarks and include extraneous materials on the bill under
consideration.
The SPEAKER pro tempore. Is there objection to the request of the
gentleman from Connecticut?
There was no objection.
Mr. LARSON of Connecticut. Madam Speaker, I yield myself such time as
I might consume.
ALS is a devastating and cruel disease. There is no cure for ALS, and
ALS always leads to a premature death. On average, people live only 2
to 5 years after getting a diagnosis of ALS.
Earlier this year, I lost my dear friend and former Chief of Staff,
Elliot Ginsberg to ALS, and previously lost a near and dear friend,
Danny Jones, who I went to grammar school with and played basketball
with, who later led Central Connecticut in his collegiate years.
Every year, approximately 5,000 Americans are diagnosed with ALS.
Over time, people with ALS lose their ability to speak, to eat, to
move, and even to breathe. They are unable to work due to their severe
disabilities, and they lose their jobs and their employer-based health
insurance. I have witnessed this happen to both them and, as
importantly, their family members, and to see the agony and the
suffering and yet the dedication and love that they go through.
Recognizing the devastating nature of ALS, in 2000, Congress passed
bipartisan legislation that waived the 24-month waiting period for
Medicare for people with ALS.
Today, we consider the ALS Disability Insurance Access Act of 2019.
This bipartisan legislation will end the 5-month waiting period for
Social Security Disability Insurance benefits for people with ALS.
Madam Speaker, I want to give special thanks to Representative Seth
Moulton, who has been a champion on this issue, along with the 305
Members of the House of Representatives who have cosponsored
Representative Moulton's bill.
Madam Speaker, I urge my colleagues to vote in favor of the ALS
Disability Insurance Access Act of 2019. Our actions today will provide
people with ALS quicker access to the Social Security and Medicare
benefits they have earned.
Madam Speaker, I would also like to commend my colleague on the House
Ways and Means Committee, Bill Pascrell, for his passionate leadership
and untiring advocacy on behalf of those suffering with Huntington's
disease, a terrible disease which affects children as well as adults.
Today, we are passing this bill for many with ALS, but we also know
there are many devastating diseases, such as Huntington's and
metastatic breast cancer, which also deserve the same benefits and to
have bills in Congress that will provide just that.
We need a solution for everyone.
People with the kinds of severe disease and disabilities that qualify
them for Social Security really need the benefits they have earned as
soon as possible. I hope that in the next Congress we can try to help
everyone, by doing what Bernie Sanders and Lloyd Doggett and others
have proposed, to eliminate these waiting periods across the board.
Madam Speaker, I urge my colleagues to support this legislation, and
I reserve the balance of my time.
Mr. REED. Madam Speaker, I yield myself such time as I may consume.
Madam Speaker, I rise in support of S. 578, the ALS Disability
Insurance Access Act of 2019.
As my colleague, Mr. Larson, has indicated, this legislation will
provide immediate access to disability insurance benefits for
individuals suffering from ALS, otherwise known as Lou Gehrig's
disease, by eliminating the 5-month waiting period for disability
insurance benefits.
Madam Speaker, it is only fair that we remove this waiting period to
ensure everyone with this disease will have immediate access to the
benefits they have earned.
It is only fair, also, that we help great Americans like a family in
our
[[Page H6989]]
district, the Palmesano family, Mike and Suzy, who are close, personal
friends of mine, who I have gotten to know over the years when their
son Mick was recently diagnosed with rapid progression ALS.
The Palmesano family has been strong advocates for this cause, and I
couldn't be prouder of their efforts. Their bravery in the face of
adversity represents hundreds of families in our district and thousands
of families across the country struggling with this terrible disease
day in and day out.
The disability insurance waiting period was designed to make sure a
condition wasn't temporary before benefits were paid, not to prevent
great Americans, like Mick and his family and others, from receiving
disability benefits.
The data, Madam Speaker, is clear. On average, ALS patients live 3 to
5 years. Once ALS starts, it almost always progresses, eventually
taking away the ability to walk, dress, write, speak, swallow, and
breathe.
Given the severity of ALS and that there is no current cure, people
diagnosed with this disease know this is not a temporary condition.
That is why ALS is one of two conditions that has an exemption to the
24-month waiting period for Medicare.
Again, that same logic should apply to waiving the waiting period for
disability insurance.
This legislation is supported by the ALS Association, I AM ALS, Les
Turner ALS Foundation, Muscular Dystrophy Association, Team Gleason,
and the bipartisan House Problem Solvers Caucus.
I look forward to voting for this legislation, because we must stand
together and care for those struggling with ALS and also their families
as they battle this debilitating disease.
Madam Speaker, I encourage all of my colleagues to join us in
supporting this great piece of legislation, and I reserve the balance
of my time.
Mr. LARSON of Connecticut. Madam Speaker, I yield 2 minutes to the
gentleman from Massachusetts (Mr. Moulton), the distinguished gentleman
who has championed this bill.
Mr. MOULTON. Madam Speaker, I thank the gentleman from Connecticut
(Mr. Larson), my friend, for yielding.
In 2014, Pete Frates told ESPN: ``At the end of the day, I want to be
the cliche game-changer. I want to be the guy who shifts everyone's
thinking and shifts where the funds are going. Selfishly, I want to
give myself a chance, but also give a lot of other people opportunities
as well.''
Today, we consider ourselves incredibly lucky because we got to know
Pete Frates.
Pete, you accomplished this mission long ago, but today's vote is
further proof that you will live forever. We are here because you were
brave enough to stand up and show the world your strength. We are here
because of your family, who continued the fight: Julie, Lucy, John,
Nancy, Jennifer, and Andrew, and the Frate-train. I am so proud of all
of you.
We are here because of the hard work of the ALS Association, I AM
ALS, and because thousands of ALS patients and their families and
caregivers followed your lead.
Madam Speaker, I ask my colleagues to pass the ALS Disability
Insurance Access Act, and let's keep fighting until we have a cure for
this devastating disease.
Mr. REED. Madam Speaker, I yield 2 minutes to the gentleman from
Louisiana (Mr. Scalise), our great whip, to express his thoughts on
this important bill.
Mr. SCALISE. Madam Speaker, I thank the gentleman from New York (Mr.
Reed) for yielding.
Madam Speaker, I also want to thank my friend, the gentleman from
Connecticut (Mr. Larson), for leading on this important piece of
legislation as well.
I rise in strong support, Madam Speaker, of the ALS Disability
Insurance Access Act.
We have worked closely on so many issues with the ALS community, and
this is another great example of that. I know as I was talking with the
majority leader last week during our colloquy, Mr. Hoyer, we worked on
getting this bill scheduled.
Madam Speaker, I thank the majority leader for bringing this bill to
the floor, because at a time when you hear about Congress'
disagreements--which, unfortunately, there are a number of areas where
we do disagree--this is one area where we have come together; and not
just today, on this issue regarding the timeline that you have to wait
for ALS patients to be eligible for SSDI, a timeline that we will now
eliminate, properly so, but we have been here before and Congress has
come together on other areas.
The Steve Gleason Act is one of those great examples, where speech-
generating devices were being denied to people with ALS. It was a
ruling that had come out of Medicare that we had all disagreed with,
but it took an act of Congress to fix that.
Congress did come together to do that, just as Congress is coming
together today to right this wrong and to stand up for those ALS
patients who just want to live life to the fullest.
Steve Gleason is one of those examples. He is a constituent of mine
and has become a dear friend, and somebody who really does live life to
the fullest and doesn't let a disability define him.
He actually has gone out and become a pioneer and inspired so many
others to just go out and live their life and let's get government
impediments out of the way.
That is what we are doing here today. We are coming together as
Republicans and Democrats to stand up for those people with ALS who
just want that opportunity to live their life to the fullest.
I want to reiterate that great motto that Steve Gleason lives by: No
white flags. It means you never surrender; you just go out there every
day and do the best you can.
Today, we are going to help thousands of people across this country
do exactly that.
Madam Speaker, I urge all of my colleagues to support this bill.
Mr. LARSON of Connecticut. Madam Speaker, I yield 2 minutes to the
gentleman from Rhode Island (Mr. Langevin), a distinguished gentleman
who has been a lifelong fighter on behalf of people with disabilities.
Mr. LANGEVIN. Madam Speaker, I thank the gentleman from Connecticut
(Mr. Larson) for yielding.
Madam Speaker, I rise today in strong support of S. 578, the ALS
Disability Insurance Access Act, which ensures that individuals who are
diagnosed with ALS are not forced to wait to receive the Social
Security Disability benefits that they have earned and they so
desperately need.
The onset of a disability can be a difficult, challenging, and often
disorienting time. However, by eliminating the 5-month waiting period
for ALS patients to receive disability benefits, we can help families
facing this difficult diagnosis focus on their health and well-being
instead of worrying about how to keep a roof over their head or put
food on the table.
Madam Speaker, I applaud my good friend and colleague, Senator
Sheldon Whitehouse, for championing this bipartisan effort in the
Senate. He has been a strong voice for the ALS community as co-chair of
the Senate ALS Caucus, and I have been proud to work with him on this
legislation.
Madam Speaker, I also recognize our colleague here, Representative
Seth Moulton, for his leadership as well.
Madam Speaker, I also want to recognize one of my constituents,
Christa Thompson, who has been a dedicated crusader for the ALS
community. Christa knows the struggle all too well, as she has watched
her husband, Olin, battle this devastating disease.
Christa, a proud mother of three boys, made it her mission to engage
with me and my delegation colleagues early on, and it is in large part
due to her efforts and the efforts of ALS advocates everywhere,
including my good friend, J.R. Pagliarini, who has been such a champion
of ALS back in Rhode Island, that we will be able to provide some
important relief to families.
Madam Speaker, I urge my colleagues to support this important
measure.
Let's make a difference for these families and those diagnosed with
ALS.
Mr. REED. Madam Speaker, I yield 2 minutes to the gentleman from
Florida (Mr. Bilirakis).
{time} 1515
Mr. BILIRAKIS. Madam Speaker, I thank the gentleman from New York
(Mr. Reed) for yielding.
[[Page H6990]]
Madam Speaker, I rise today in support of S. 578, the ALS Disability
Insurance Access Act.
ALS is a rare, fatal, progressive, neurodegenerative disease with an
ability to strike anyone at any time throughout the world.
It has no racial, ethnic, or socioeconomic boundaries. Still, we
actually have no cause or cure, and it is very sad, but we have to work
on a cure. We will never give up, Madam Speaker.
While military veterans are 1\1/2\ to 2 times more likely to develop
ALS than those who have not served, and 5 to 10 percent of cases are
familial and due to a gene mutation, 90 percent are considered sporadic
with no clear reason for development.
Rapidly progressing throughout the body, time is critical for ALS
patients as many suffer total paralysis and death, typically within 2
to 5 years following diagnosis, although I do know some friends who
have lived much longer than that. They continue to contribute to
society and to their respective wonderful communities.
Again, during that time, many lose their ability to work and lose
access to employer-based insurance. Despite contributing to Social
Security during their working years, ALS patients must wait 5 months
before they can receive access to the benefits they have earned. These
disability benefits help pay for costly medical care, food, and
housing.
ALS patients cannot afford to wait for the wheels of bureaucracy to
turn. They need our immediate support in the face of this cruel
disease. As the co-chair of the Rare Disease Caucus, I urge my
colleagues to support this critical bill for ALS patients.
Mr. LARSON of Connecticut. Madam Speaker, I yield 2 minutes to the
gentlewoman from California (Ms. Judy Chu), a gracious and
distinguished lady on the Ways and Means Committee.
Ms. JUDY CHU of California. Madam Speaker, I rise today in support of
the ALS Disability Insurance Access Act, which would help those
diagnosed with ALS get their benefits quickly by making them eligible
to receive Social Security Disability Insurance immediately instead of
having to wait 5 months.
I have heard heart-wrenching stories from my constituents whose lives
have been upended by this cruel and aggressive disease. ALS is a
progressive neurodegenerative disease over the course of which those
with ALS lose the ability to initiate and control muscle movement. This
leads to paralysis and, ultimately, death.
Tragically, ALS has a fatality rate of 100 percent. Unfortunately,
this disease is so aggressive and can take so long to diagnose that
some patients lose their battle with ALS before the 5-month waiting
period for SSDI benefits is over. This bill would ensure that those who
have an ALS diagnosis are not denied their benefits when they need them
most.
I am proud to be a cosponsor of the House version of this
legislation, and I urge my colleagues to support the bill before us
today.
Mr. REED. Madam Speaker, I yield 2 minutes to the gentleman from New
York (Mr. King), the dean of the New York delegation who has had a long
history of support for causes such as this.
Mr. KING of New York. Madam Speaker, let me thank my colleague from
New York for yielding. Let me also commend Mr. Larson and Mr. Moulton
for their leadership efforts on this, and, of course, Mr. Bilirakis.
It is really a great honor to be supporting this legislation. I have
known, unfortunately, too many people who suffer from ALS.
It is 100 percent fatal. That is the reality of it.
All of us who meet advocates every year coming in to lobby us, or to
urge us to support more research funding for ALS, we realize very
quickly they may be there 1 year and 2 years, and then we never see
them again because they have died. It is a brutal neurodegenerative
neuromuscular disease, and this 5-month limit that was put on them
before they can obtain disability benefits was so unfair.
During that 5 months, the disease can progress so rapidly. The
medical costs go up. The psychological costs are there. By passing this
legislation today, we are going to provide not just financial relief
but also psychological and emotional care and relief for their families
and friends.
In New York, we always refer to this as Lou Gehrig's disease after
the famed Yankee slugger, and I am saying that as a Mets fan. Lou
Gehrig is a hero in New York. Unfortunately, as great as his baseball
record is, he is known most for the disease that ended both his career
and his life.
Let me just say also, this will be my final appearance on the House
floor speaking, the last time I speak on the House floor. I want to say
what a great honor it has been to serve for these past 28 years with
all of the Members. It has been a great privilege for me. One of the
real privileges is being able to support legislation such as this,
which is so needed and so necessary.
Mr. LARSON of Connecticut. Madam Speaker, at this time, it is my
privilege to yield 2 minutes to the gentleman from Illinois (Mr. Danny
K. Davis), who I say is the voice of God. When you hear him speak, I
think you will agree with me.
Mr. DANNY K. DAVIS of Illinois. Madam Speaker, I want to thank the
gentleman for yielding.
As a cosponsor of the ALS Disability Insurance Access Act, I rise in
strong support of this bill that removes the harmful 5-month waiting
period for earned Social Security Disability Insurance benefits.
For years, representatives from the greater Chicago chapter of The
ALS Association have raised the financial hardship caused by this
waiting period. Disability insurance is an earned benefit. Federal law
should ease suffering and promote the well-being of persons eligible
for SSDI.
This bill will help alleviate the financial burden of persons and
families struggling with ALS, making it a little easier as they battle
the tremendous loss associated with this illness.
Enacting this bill is an important step forward to removing barriers
to disability benefits. I look forward to advancing additional bills to
eliminate obstacles to disability benefits, including advocating for
the elimination of the waiting period for financial and Medicare
assistance for all SSDI-eligible individuals.
Again, I thank the gentleman for yielding.
Mr. REED. Madam Speaker, at this time, I have no other speakers
seeking time, so I reserve the balance of my time.
Mr. LARSON of Connecticut. Madam Speaker, I yield 1 minute to the
gentleman from Illinois (Mr. Quigley), considered the greatest hockey
player in the Congress.
Mr. QUIGLEY. Madam Speaker, I thank the gentleman for yielding. I am
sure not everyone on the other side would agree with that, or on this
side either.
I rise today in strong support of this bill, and I want to thank
Chairman Neal and Members Moulton and King for a bill that will surely
bring hope and dignity to ALS patients and caregivers.
The 5-month waiting period is simply unacceptable for a disease like
ALS, and I am glad that Congress is finally righting this wrong.
Over the past 2 years, it has been an honor for me to partner with
the ALS community. For too long, ALS has flown under the radar. It has
gone underfunded, underresearched, and unnoticed. But that is rapidly
changing, thanks to the efforts of patient advocates fighting for their
own lives and the lives of those not yet diagnosed.
I would like to give a special shout-out to my friends and
Chicagoans, Brian Wallach and Sandra Abrevaya, the husband and wife
cofounders of I AM ALS, and to Dan Tate, Jr. They are tireless,
selfless patient advocates. Without them, we simply wouldn't be here
today.
I want to thank you all for bringing this bill to the floor. I am
proud to be an original cosponsor and welcome its bipartisan support.
Mr. REED. Madam Speaker, I continue to reserve the balance of my
time.
Mr. LARSON of Connecticut. Madam Speaker, at this time, I yield 1
minute to the distinguished gentleman from Rhode Island (Mr.
Cicilline).
Mr. CICILLINE. Madam Speaker, I thank the gentleman for yielding. I
am proud to be a cosponsor of the ALS Disability Insurance Access Act
of 2019, and I urge my colleagues to support this important bill.
[[Page H6991]]
I want to acknowledge the extraordinary leadership of Congressman
Moulton, who has led this effort in the House, and my Senator, Senator
Whitehouse, in the Senate, and all the cosponsors.
As we all know, ALS is a terribly debilitating disease. For those of
us who have friends or family members who have been diagnosed with
this, we know what a family endures when the diagnosis is made, and
they are overwrought with how they are going to manage this very
serious health challenge. Imagine, in addition to all of that, if
people have to worry about whether or not they have access to care in
those critical first months of this disease.
So, I applaud everyone who has cosponsored this bill. Patients and
families will benefit enormously from this legislation. They will have
one less thing to worry about when they are confronting this very
serious diagnosis.
I urge my colleagues to support this legislation, and I thank the
gentleman again for yielding.
Mr. REED. Madam Speaker, I continue to reserve the balance of my
time.
Mr. LARSON of Connecticut. Madam Speaker, I have great gratitude for
my distinguished colleague from New York (Mr. Reed), and I thank Seth
Moulton for his outstanding work on this bill.
I urge my colleagues to support S. 578, and I yield back the balance
of my time.
Mr. REED. Madam Speaker, as we close this debate, I applaud my
colleague from Connecticut who is a true, good friend, Mr. Larson, and
I mean that from the bottom of my heart.
I am just proud to stand in full support of this commonsense
legislation that will make a difference, Madam Speaker, in the lives of
so many Americans suffering from ALS. I know it will make a difference
for Mick Palmesano. I know it will help alleviate and bring some
comfort to the entire Palmesano family in our home district of New
York.
But most importantly, I know we demonstrated to the folks in America
that Congress can work, that Democrats and Republicans can come
together on an important issue like this and pass important legislation
that will improve the lives of Americans.
Last week, the Senate overwhelmingly passed this legislation, Madam
Speaker. I urge all of my colleagues to join us in support of this fine
legislation so we can get it to the President's desk for signature
without delay.
I yield back the balance of my time.
Mr. DOGGETT. Madam Speaker, I join today in support of the ALS
Disability Insurance Access Act to ensure that individuals diagnosed
with amyotrophic lateral sclerosis (ALS) receive the financial support
they need and for which they have already qualified. I congratulate
Congressman Moulton and Senator Whitehouse on their successful
leadership for this important effort of which I have been a cosponsor.
For individuals who are determined to have a sufficiently severe
disability to quality for Social Security Disability Insurance, the
security that Social Security is intended to provide can come with a
cost--two years without health insurance. This waiting period--which
should really be called a suffering period--must be eliminated. Two
unjustified delays prolong the suffering. The first, a five-month delay
to receive any disability payment even though the recipient has already
qualified. The second, is a two-year delay to access Medicare coverage
for which they already qualified.
This means that the millions of individuals with disabilities in this
waiting period may not be able to access necessary medical treatments
and medications. This only makes existing health complications worse
and increases overall health care spending. Many die waiting their turn
for health coverage. In 2018 alone, about 16,000 workers with
disabilities died during the 5-month waiting period and about 56,000
workers with disabilities died waiting for Medicare coverage.
These waiting periods only serve to harm the health of individuals
with disabilities and delay the support they need. In addition to this
bill for individuals with ALS, other colleagues have offered
legislation to end the waiting periods for individuals with metastatic
breast cancer, Huntington's Disease, and other life-threatening
illnesses. I support all of these efforts. We must provide a healthy
foundation for all individuals with disabilities, who already arc
experiencing unique health challenges.
I hope that this ALS bill represents a step forward in the eventual
approval of the bipartisan Stop the Wait bill, H.R. 4386, that I
introduced to eliminate the onerous waiting periods for Social Security
Disability Insurance and Medicare. This bill now has 50 House
cosponsors. and Senator Bob Casey has introduced companion legislation.
Having recognized the suffering of these waiting periods for Americans
with ALS, I urge Congress to consider the suffering of all those
subject to waiting periods and pass long-overdue reforms to Stop the
Wait. We must ensure individuals with disabilities have access to
health care when they need it. Social Security cannot truly provide
health care security, until all individuals with disabilities have
guaranteed access to prompt Medicare coverage. Let's Stop the Wait for
all of them.
Ms. MOORE. Madam Speaker, today I rise in support of the ALS
Disability Insurance Access Act. This important bill eliminates the
mandatory five-month waiting period for patients with ALS seeking to
access the Social Security Disability Insurance (SSDI) benefits they
earned.
The waiting period creates an undue financial burden when ALS
patients are already facing enormous financial stress. But while we act
today to alleviate the hardship created by this waiting period for ALS
patients, Congress must extend similar relief to other beneficiaries
who are equally deserving.
What sense does it make to have require SSDI beneficiaries to endure
a five-month waiting period after they have been determined eligible
for their earned SSDI benefits? This requirement creates an unnecessary
delay for some of our nation's most vulnerable.
We must ensure that all individuals who qualify for SSDI can access
the benefits for which they have already qualified without undue delay.
I urge my colleagues to not only support the ALS Disability Insurance
Access Act, but to end the waiting period for all SSDI beneficiaries.
The SPEAKER pro tempore. The question is on the motion offered by the
gentleman from Connecticut (Mr. Larson) that the House suspend the
rules and pass the bill, S. 578.
The question was taken; and (two-thirds being in the affirmative) the
rules were suspended and the bill was passed.
A motion to reconsider was laid on the table.
____________________