How This Country Fails Individuals with Disabilities

Ten years ago, as a promising Ph.D. student at UC Davis on a full research fellowship, I had a very different plan for my life. Told nothing was out of my grasp, I had big plans. But without warning, past health problems surged and flared, putting me in the hospital and leading to a diagnosis of Crohn’s. It would not be long before it became clear I had a form of Crohn’s that is most pernicious and most resistant to traditional, insurance-covered treatments.

Crohn’s has caused problems in multiple organs and brought crushing symptom after symptom. And time is ticking — the damage to my organs is cumulative and progressively irreversible.

Bedridden for most of the last decade, I struggled alone and worked with doctors and other experts to formulate an integrative science solution to my problem: a treatment regimen that has included prescription, compounded, specialty and over-the-counter medications, liniments and herbal treatments of many different kinds — some of which I prepare for myself — to manage a host of difficulties: nausea, serious spine and joint problems, skin problems and heavy damage to my nervous system from the pain.

The last decade has been filled with incredible suffering, with hundreds of hospital stays and with serious abuse, even from members of my own family. Doctors certified I would likely never be able to work again. I have moved from one temporary living arrangement to another, facing emotional and physical abuse, attacks, bugs, serious problems and danger almost everywhere I stayed. I stayed at one shelter full of rats and roaches and another with someone who was unable to control homicidal ideation. I’ve rarely even felt safe where I lived, and where I lived was all too often a hospital bed.

Without an income, it was only recently, and with the help of my Rabbi and other friends, that I was able to find a more stable place. I have never given up my faith in the future that I believe is possible: that I can work towards the healing I believe is possible for the world. I have been fortunate to have a great resume filled with accolades and achievement and friends and teachers that speak highly of me, but because of my complex condition and partial disability, I am trapped in a difficult situation.

This country’s disability system simply does not work for people like me. I’m too young to have had a chance to work, with an exotic condition difficult and expensive to treat with full Medicare, let alone the minimal care I qualify for with social security/partial disability. Full disability depends only on years worked paying taxes in the federal disability system. As a young graduate student, I did not meet the requirements (The standard is ten years; it can be reduced through programs, but not enough for me to qualify).

We need more support for those not qualified for full disability.

Instead, I survive on an income that is a small fraction of unemployment insurance, which I have not been able to receive either. After applying in April 2020, my claim is still pending. California’s Employment Development Department will not answer calls or emails, and even the unemployment expert I hired was unable to help except to suggest trying a new claim when I can.

Medicaid/Medi-Cal insurance covers my hospital stays, but it dominates my time with calls and forms and covers almost nothing else. Even worse, my unusual situation and complex condition have systematically disqualified me for aid and charities of all kinds. Instead, I have had to find what I need through whatever work, fundraising or anything else I can manage. What I need most is financial support to pay these medical costs and, if possible, to pay off medical debt, in order to get my condition towards remission and give me a chance to return to school or work.

The pandemic has complicated my situation: my normal transportation option — AccessLA — is not pandemic-safe, leaving me to rely on friends and Ubers; I am also unable to qualify for the vaccine — as I am under 65 — so I must stay home, even at a heavy cost. (My condition and its many complications qualify for a vaccine once it opens to those with high risk, but I have been told by doctors and hospitals that there are already shortages and to expect worse to come.) My medical costs have skyrocketed. Serious problems keep erupting because of Crohn’s; some mornings I awake to painful temporary skin sores, new crippling sources of pain or to any number of other excruciating problems, including malnutrition, anemia and dehydration. My friends have had crises of their own, limiting their ability to help me and fundraise with me.

Many things need to change in our system to help create a future for disabled individuals. But from my experience, we need more support for those not qualified for full disability and for those with extreme conditions whose treatment needs are not addressed by Medicaid and Medicare. More housing options should be compatible for individuals with conditions like mine, as the alternative, homelessness and shared housing, put them at risk. And more support for existing programs is needed; for example, I have been approved for 20 hours a week from In-Home Supportive Services, but I have been unable to find anyone to work with for over a year despite help from friends.

Although my condition continues to worsen, I am resolved to build the future I believe in. I am driven by my faith in the eternal, in the healing and the future I believe in for myself and for the world. My faith has meant that even when hope has felt lost, I continue to take every step necessary to survive, believing that one day my steps would carry me into a brighter tomorrow. And you can help build this future with me, too.

Michael Mandel is a published scientist, Ph.D. student and award-winning educator on long-term medical leave. All proceeds to his fund will go towards helping him towards remission, recovery and returning to independence.