Monday, September 8, 2014


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.