Many
people have asked me, through the years, why I’m not “on disability.” Since my husband died, the questions have
increased. Although everyone’s situation
is unique, mine may shed some light on the struggles of others, as well, so
I’ll take some time to explain the issues as I understand them. I’m certainly no expert on the subject, but
I’ve done enough reading and I’ve had enough contact with people going through
the process that I think I understand the basics and can take a shot at laying
out the options. This may take a while,
so if you’re not interested in the topic, you might want to bail out now. Otherwise, pour yourself a cup of coffee and
settle in.
Disability Programs
There
are a number of different ways that people can receive financial assistance
after becoming disabled. Each program
has its own set of qualifying criteria, and people who meet it can then apply
for assistance. The major programs
include the following:
o
SSDI
- Usually, when people speak of “getting disability,” they are referring to the
program known as Social Security Disability Insurance, or SSDI. To qualify for SSDI, applicants must have
worked for employers who paid Social Security taxes for them, or have paid
self-employment taxes if they worked for themselves. Qualifications also include a long enough and
recent enough work history. The amount paid to those who qualify for SSDI is
based on a formula which includes the amount that recipients earned during
their working years.
Personally,
I don’t qualify for SSDI because I was a missionary when I became ill, and my
mission board didn’t pay into Social Security for the married female
missionaries. A similar situation is
faced by stay-at-home parents who become disabled. People working traditional jobs when they
begin feeling ill may face a different problem.
As they become increasingly disabled, it’s common for people to cut back
on their working hours or to find less-demanding and less-well-paying
employment. Often, by the time people
give up and apply for disability, the amount they can receive is lower than it
would have been if they had not continued trying to work.
o
SSI
– Those who don’t qualify for SSDI may qualify for Supplemental Security
Income, or SSI. Eligibility for SSI is
based on income and assets. SSI looks at
family, rather than simply individual income, and while my husband was alive
and working, our income was above the limit.
Currently, I don’t qualify because I have more than $2,000 in assets,
which is the maximum amount individuals are allowed.
o
Early
survivor’s benefits – When workers retire, they are generally eligible for Social
Security payments. If they die before
retirement age, their widow or widower is entitled to survivor’s benefits based
on the deceased worker’s earnings history.
Generally, a widow or widower is eligible for survivor’s benefits (at a
reduced rate) at age 60. However, people
can apply at age 50 if they are disabled.
This is the program through which I could apply. Like other Social
Security payments, the full allowable amount can only be received at retirement
age, and the sooner that recipients take benefits, the lower the amount will be
(and will never increase, except for inflationary adjustments.) As an aside, sometimes people confuse
survivor benefits with spousal benefits, but they are different things.
o
Private
disability insurance – It’s possible to purchase insurance policies that cover
future disability. These policies may be
short-term disability policies, which have a maximum payment duration of no more
than two years, or long-term disability policies, which can pay lifetime
benefits, in some cases. Disability
insurance can be purchased on an individual basis, or may be provided by an
employer. A Forbes article states that payment
is usually about 60% of an individual’s former salary.
o
Worker’s
Compensation – If an injury or illness occurs on the job, people may be covered
by worker’s compensation. As the Forbes
article notes, however, fewer than
5% of disabling accidents and illnesses are work-related.
The Application
Process
After the initial qualifications have been met,
the question becomes one of the nature and severity of the disability. It is much more likely for approval to be
granted based on some conditions than on others. The Social Security Administration states that “we maintain a list of medical conditions that
are so severe they automatically mean that you are disabled. If your condition
is not on the list, we have to decide if it is of equal severity.” They must also decide if applicants can do
the work they did previously or are able to adjust to another type of
employment.
Winning a disability claim, for any condition,
isn’t easy. The Social Security Office of Retirement and Disability Policy reports that between 2001 and 2010, 28% of applicants were
awarded benefits at the initial claims level.
Of those that appealed, 3% were awarded benefits at the reconsideration
and 13% at the hearing levels. The experiences of others with chemical illness
leads me to believe that receiving disability for the condition isn’t completely
impossible, but is definitely challenging.
It can be a multi-year process and can require doctor’s examinations, court
appearances and other activities that are quite difficult for those with
toxic illness to accomplish and that can make a sufferer’s condition worse.
In a book relating her chemical illness journey,
teacher Lorraine Smith recounts her battle for compensation. She speaks of visiting a doctor who laughed
out loud when she described her health problems. The doctor also wore an after-shave lotion
that made her feel weak and dizzy, and when she mentioned her problem, the
doctor said he was wearing a “special fragrance” that didn’t cause
reactions. Smith also describes her time
inside the courtroom, which was filled with people wearing synthetic
fragrances. She mentions her need for a fragrance-free environment and notes
that it would have helped to have access to fresh air, perhaps through an open
window, and would have been nice to be scheduled as the first case of the day,
to minimize exposure time. She notes, “Without these provisions, I was actually being asked to
perform tasks that were the very nature of my disability.” Exactly.
The fight for disability is also hindered by powerful
adversaries with strong financial interest in downplaying and belittling
chemical illness. In her enlightening paper entitled Multiple Chemical Sensitivities Under Seige, Dr. Ann McCampbell writes, “Perhaps the area where the
chemical industry is most aggressively fighting MCS is in the courts.” She notes that in addition to direct attacks
on plaintiffs’ credibility, industry personnel file briefs, supply “expert”
witnesses, and distribute anti-MCS literature to witnesses and attorneys. The chemical industry is also very active in
attempting to revoke the medical licenses of doctors who acknowledge and treat
toxic illness. This makes doctors
understandably skittish about supporting their chemically ill patients who wish
to file for disability.
Among my other significant health conditions is
chronic Lyme disease. Unfortunately, the
politics of that condition aren’t much better.
Since this blog is primarily focused on the chemical toxicity problem, I
won’t expound on the Lyme wars. Anyone
interested might want to read the novel Over the Edge or watch the documentary Under Our Skin.
The Financial
Picture
Applying for disability can be not
only logistically challenging, but emotionally challenging as well. It can feel like giving up and acknowledging
the permanence of a condition. It also
caps financial possibilities. The Social Security Administration states that for 2014, the average monthly payment for those
on SSI is $534 and the average disabled widow makes $713. The average payment
for SSDI is better, at $1145, but is still considerably lower than many Americans would consider a living wage. People receiving disability payments
are allowed to earn a small amount of money, but not enough to make a
significant difference in their standard of living. Everyone I know on disability struggles. Public housing is generally not accessible
for people with chemical illness, and even living with family is often not
possible. Many people live in their cars
or in tents.
Disability payments can be a
lifeline and a great help to many people.
I’m glad the programs exist and it’s possible that at some point I’ll
decide my only option is to apply. I do
think it’s helpful, though, for people to understand that being disabled
doesn’t always mean qualifying for benefits and that receiving benefits doesn’t
mean an end to financial challenges.
Being disabled by illness isn’t a
lot of fun. I don’t recommend it. Seriously, life happens and it isn’t possible
to prevent all illnesses and accidents.
It’s definitely possible, however, to lower the risk of developing a
wide array of health conditions by lowering toxic exposures. There are many, many reasons to take the
issue seriously.
