Beyond Opportunity: The Future of Americans With Disabilities
Saturday, 01 October 2016 00:00 By Susan Sered, Democracy: A Journal of
Ideas | News Analysis
Hillary Clinton just offered the most comprehensive pitch ever to the
one-quarter of the American electorate with disabilities. It's only a start.
(Photo: Gage Skidmore / Flickr)
Hillary Clinton was right to remind Americans, during a recent speech, that
the true test of a society is "how we treat our fellow human beings,
especially the most vulnerable among us." She then proceeded to lay out a
plan to systematically help those with disabilities acquire education and
find jobs. But a careful study of Americans with disabilities makes clear
one fundamental danger: If we make access to economic opportunity and labor
market participation the primary goal of government policy for people with
disabilities, we are going to exclude millions of Americans. Ultimately, all
nations, no matter how robust their social markets, also need strong safety
nets if they are to fulfill the principle Clinton described.
Consider Jane, a research subject whose name I have changed. In 2003, when I
first met her, Jane lived in a small town in northern Idaho. An energetic,
gregarious widow in her late forties, she supported herself by working at a
local café. Over the next several years, as local businesses fell beneath
the charge of national chain restaurants, the café's business declined and
Jane's hours were cut. She picked up additional part-time jobs cleaning
houses and doing laundry in a nursing home. None of her employers offered
health insurance, yet she earned too much to be eligible for Medicaid in
Idaho.
By the time she was in her mid-fifties, her health had deteriorated: She
suffered a few bouts of pneumonia and experienced poor circulation in her
legs. She still loved working, especially at the café ("It was my social
life," she told me). "But finally I couldn't do it anymore
I had to stop
because of my legs -- you see my feet and ankles hurt and then turned
black." She was eventually diagnosed with diabetes by a doctor at a weekly
volunteer clinic. The doctor told her that she had likely already been
suffering from diabetes for a decade.
Jane applied for Social Security Disability Insurance (SSDI). At age 57,
after several years of denied applications, she was officially deemed
"disabled." She then had to wait another two years to become eligible for
Medicare. (There is a 25-month waiting period for Medicare entitlement,
despite health problems that leave people unable to work.) During this time,
she made do with whatever occasional free samples of medication the
volunteer clinic had on hand.
When I visited Jane in 2015, she was no longer able to afford her apartment
and had moved into a one room shack on the outskirts of town. Though she had
worked all of her life, her SSDI allowance, based on past earned income, and
Supplemental Security Income (SSI is designed to bring the monthly checks of
low earners up to a minimal threshold) only paid her a total of $800 a
month. This was not enough for her to make use of the car that sat -- out of
gas and in need of repair -- in front of her house.
This formerly energetic woman was now housebound. She told me how much she
missed going out to work at the café, but, she explained, "maybe that's for
the best." She'd lost her teeth and couldn't afford dentures, which are not
covered by Medicaid in Idaho or by Medicare at all, and was embarrassed by
the idea that her former coworkers and café patrons might see her. Equally
devastating, without teeth, she can't chew the healthy vegetables and whole
grains that her doctor tells her are necessary for keeping her diabetes from
further damaging her body.
Unfortunately, Jane's situation is all-too-typical. In 2016, 14 million
Americans under the age of 65 are officially deemed disabled by the Social
Security Administration.
In Jane's case, work (albeit cobbled together part-time jobs) was available,
but lack of access to medical care thrust her into Disability. The
Affordable Care Act (ACA) has brought millions of Americans into health-care
coverage, but the legislation has had little impact on people like Jane who
live in states that turned down federal funds for Medicaid expansion under
the ACA. In non-expansion states, people who may well be capable of working
continue to have to choose between a job and the access to health care that
comes from Disability status. While a variety of factors likely come into
play, it is telling that, for the most part, states that chose not to expand
Medicaid eligibility have higher rates of individuals receiving Disability
payments.
For Jane, SSDI is a lifesaver, but one that has come at high personal cost,
imposing a stigmatizing label -- "disabled" -- that American culture and
policies treat with a great deal of ambivalence. We Americans admire people
who "overcome" their disabilities and show their "strong spirit" in contexts
such as the Paralympics, yet disabled Americans are likely to remain poor
throughout their lives. And, like Jane, applicants for SSDI routinely need
to hire lawyers -- who then keep a substantial part of retroactive payments
-- to "prove" that they are really disabled.
While the Disability system does provide a crucial safety net for millions
of Americans like Jane, it is structured to reinforce existing inequalities.
People who earned higher wages before they became disabled receive larger
payments than low-wage workers, and the minimum payments are not sufficient
for disabled people like Jane to live in dignity.
Jane is one of the 35.4 million Americans with disabilities eligible to vote
in the November 2016 election. According to numbers computed by Rutgers
professors Lisa Schur and Douglas Kruse, the number of eligible voters with
disabilities has increased 10.8 percent since 2008 and there will be 62.7
million eligible voters who either have a disability or live with a
household member who has one, more than one-fourth of the total electorate.
People with disabilities have received some attention from both campaigns.
Trump's public mocking of a disabled reporter remains a popular trope on the
campaign trail. And Clinton, as mentioned, gave a speech this week outlining
her commitment to bolster job opportunities and eliminate the "subminimum
wage" paid to some people with disabilities. Yet specific policy proposals
for those who cannot work remain few and far between.
With this in mind, what could have -- or still could -- make a difference
for the better in Jane's life (and in the lives of those who, like Jane,
live with a disability)? Some specific proposals include:
Expand Medicaid in all states so that working people do not need to
go onto Disability to access health care.
Get lawyers out of the application system for Disability. This
should not be an adversarial process and no one should be taking a bite of
the government benefits aimed at disabled Americans.
Eliminate the waiting period for Medicare eligibility for people
accepted onto Disability. It makes no sense to delay the health care that
they, by definition, need.
Include oral health care in coverage programs, including Medicare.
Raise minimum Disability payments to reasonable levels.
Encourage and expand meaningful work opportunities for people on
Disability, as well as for people living with disabilities who neither need
nor qualify for Social Security Disability status or are waiting to be
accepted onto Social Security Disability.
As in all matters of principle, the devil is in the details. These policy
proposals should be possible and straightforward to adopt. But most of all,
they would spare Americans like Jane from a lifetime wasted in hopeless
frustration, as they mourn the loss of jobs, of friends, of their health,
and of their dignity.
This piece was reprinted by Truthout with permission or license. It may not
be reproduced in any form without permission or license from the source.
SUSAN SERED
Susan Sered, together with Maureen Norton-Hawk, is author of Can't Catch a
Break: Gender, Jail, Drugs, and the Limits of Personal Responsibility,
published in 2014 by University of California Press. You can follow her work
at susan.sered.name.
RELATED STORIES
Protect Social Security Disability Insurance Without Cutting Benefits
By Jessica Schieder, Center for Effective Government | News Analysis
White House and Republicans Reach Budget Deal - Including Disability
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By Lisa Mascaro, Los Angeles Times | Report
Eligible but Got Nothing: Hundreds of Thousands of People With Disabilities
Blocked From College Aid
By Meredith Kolodner, The Hechinger Report | Report
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Beyond Opportunity: The Future of Americans With Disabilities
Saturday, 01 October 2016 00:00 By Susan Sered, Democracy: A Journal of
Ideas | News Analysis
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reference not valid.Error! Hyperlink reference not valid. Error! Hyperlink
reference not valid.
Hillary Clinton just offered the most comprehensive pitch ever to
the one-quarter of the American electorate with disabilities. It's only a
start. (Photo: Gage Skidmore / Flickr)
Hillary Clinton was right to remind Americans, during a recent
speech, that the true test of a society is "how we treat our fellow human
beings, especially the most vulnerable among us." She then proceeded to lay
out a plan to systematically help those with disabilities acquire education
and find jobs. But a careful study of Americans with disabilities makes
clear one fundamental danger: If we make access to economic opportunity and
labor market participation the primary goal of government policy for people
with disabilities, we are going to exclude millions of Americans.
Ultimately, all nations, no matter how robust their social markets, also
need strong safety nets if they are to fulfill the principle Clinton
described.
Consider Jane, a research subject whose name I have changed. In 2003, when I
first met her, Jane lived in a small town in northern Idaho. An energetic,
gregarious widow in her late forties, she supported herself by working at a
local café. Over the next several years, as local businesses fell beneath
the charge of national chain restaurants, the café's business declined and
Jane's hours were cut. She picked up additional part-time jobs cleaning
houses and doing laundry in a nursing home. None of her employers offered
health insurance, yet she earned too much to be eligible for Medicaid in
Idaho.
By the time she was in her mid-fifties, her health had deteriorated: She
suffered a few bouts of pneumonia and experienced poor circulation in her
legs. She still loved working, especially at the café ("It was my social
life," she told me). "But finally I couldn't do it anymore
I had to stop
because of my legs -- you see my feet and ankles hurt and then turned
black." She was eventually diagnosed with diabetes by a doctor at a weekly
volunteer clinic. The doctor told her that she had likely already been
suffering from diabetes for a decade.
Jane applied for Social Security Disability Insurance (SSDI). At age 57,
after several years of denied applications, she was officially deemed
"disabled." She then had to wait another two years to become eligible for
Medicare. (There is a 25-month waiting period for Medicare entitlement,
despite health problems that leave people unable to work.) During this time,
she made do with whatever occasional free samples of medication the
volunteer clinic had on hand.
When I visited Jane in 2015, she was no longer able to afford her apartment
and had moved into a one room shack on the outskirts of town. Though she had
worked all of her life, her SSDI allowance, based on past earned income, and
Supplemental Security Income (SSI is designed to bring the monthly checks of
low earners up to a minimal threshold) only paid her a total of $800 a
month. This was not enough for her to make use of the car that sat -- out of
gas and in need of repair -- in front of her house.
This formerly energetic woman was now housebound. She told me how much she
missed going out to work at the café, but, she explained, "maybe that's for
the best." She'd lost her teeth and couldn't afford dentures, which are not
covered by Medicaid in Idaho or by Medicare at all, and was embarrassed by
the idea that her former coworkers and café patrons might see her. Equally
devastating, without teeth, she can't chew the healthy vegetables and whole
grains that her doctor tells her are necessary for keeping her diabetes from
further damaging her body.
Unfortunately, Jane's situation is all-too-typical. In 2016, 14 million
Americans under the age of 65 are officially deemed disabled by the Social
Security Administration.
In Jane's case, work (albeit cobbled together part-time jobs) was available,
but lack of access to medical care thrust her into Disability. The
Affordable Care Act (ACA) has brought millions of Americans into health-care
coverage, but the legislation has had little impact on people like Jane who
live in states that turned down federal funds for Medicaid expansion under
the ACA. In non-expansion states, people who may well be capable of working
continue to have to choose between a job and the access to health care that
comes from Disability status. While a variety of factors likely come into
play, it is telling that, for the most part, states that chose not to expand
Medicaid eligibility have higher rates of individuals receiving Disability
payments.
For Jane, SSDI is a lifesaver, but one that has come at high personal cost,
imposing a stigmatizing label -- "disabled" -- that American culture and
policies treat with a great deal of ambivalence. We Americans admire people
who "overcome" their disabilities and show their "strong spirit" in contexts
such as the Paralympics, yet disabled Americans are likely to remain poor
throughout their lives. And, like Jane, applicants for SSDI routinely need
to hire lawyers -- who then keep a substantial part of retroactive payments
-- to "prove" that they are really disabled.
While the Disability system does provide a crucial safety net for millions
of Americans like Jane, it is structured to reinforce existing inequalities.
People who earned higher wages before they became disabled receive larger
payments than low-wage workers, and the minimum payments are not sufficient
for disabled people like Jane to live in dignity.
Jane is one of the 35.4 million Americans with disabilities eligible to vote
in the November 2016 election. According to numbers computed by Rutgers
professors Lisa Schur and Douglas Kruse, the number of eligible voters with
disabilities has increased 10.8 percent since 2008 and there will be 62.7
million eligible voters who either have a disability or live with a
household member who has one, more than one-fourth of the total electorate.
People with disabilities have received some attention from both campaigns.
Trump's public mocking of a disabled reporter remains a popular trope on the
campaign trail. And Clinton, as mentioned, gave a speech this week outlining
her commitment to bolster job opportunities and eliminate the "subminimum
wage" paid to some people with disabilities. Yet specific policy proposals
for those who cannot work remain few and far between.
With this in mind, what could have -- or still could -- make a difference
for the better in Jane's life (and in the lives of those who, like Jane,
live with a disability)? Some specific proposals include:
Expand Medicaid in all states so that working people do not need to
go onto Disability to access health care.
Get lawyers out of the application system for Disability. This
should not be an adversarial process and no one should be taking a bite of
the government benefits aimed at disabled Americans.
Eliminate the waiting period for Medicare eligibility for people
accepted onto Disability. It makes no sense to delay the health care that
they, by definition, need.
Include oral health care in coverage programs, including Medicare.
Raise minimum Disability payments to reasonable levels.
Encourage and expand meaningful work opportunities for people on
Disability, as well as for people living with disabilities who neither need
nor qualify for Social Security Disability status or are waiting to be
accepted onto Social Security Disability.
As in all matters of principle, the devil is in the details. These policy
proposals should be possible and straightforward to adopt. But most of all,
they would spare Americans like Jane from a lifetime wasted in hopeless
frustration, as they mourn the loss of jobs, of friends, of their health,
and of their dignity.
This piece was reprinted by Truthout with permission or license. It may not
be reproduced in any form without permission or license from the source.
Susan Sered
Susan Sered, together with Maureen Norton-Hawk, is author of Can't Catch a
Break: Gender, Jail, Drugs, and the Limits of Personal Responsibility,
published in 2014 by University of California Press. You can follow her work
at susan.sered.name.
Related Stories
Protect Social Security Disability Insurance Without Cutting Benefits
By Jessica Schieder, Center for Effective Government | News AnalysisWhite
House and Republicans Reach Budget Deal - Including Disability Insurance
Cuts
By Lisa Mascaro, Los Angeles Times | ReportEligible but Got Nothing:
Hundreds of Thousands of People With Disabilities Blocked From College Aid
By Meredith Kolodner, The Hechinger Report | Report
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