In 2012, I turned 21. As a young adult with autism, I faced a stark choice. The special education system which I relied on for most of my teenage years would no longer provide the support and services I needed to function. I could either try to strike out on my own in the world without any kind of help or I could go through the grueling process of applying for Supplemental Security Income to receive the healthcare and income support I needed as a young person with a disability.

At 21, autism wasn’t my only problem, so to speak. I had been dealing with severe depression since I was a teenager and the prospect of employment for someone like me in the years after the Great Recession was dim. Little did I know then that by applying for Supplemental Security Income (SSI), I would be trapping myself in poverty even when I finally did get my first job.

I remember very little of the SSI application process itself—I was pretty sick then. I just remember my dad having to spend a lot of time on the phone with psychiatrists and my counselor, and having to collect documentation from school years for the application process. I was lucky to have parents who were adept at navigating the dizzying array of agencies and offices one needs to contact during the disability application process

I was able to receive Medicaid during the application process itself, which was a blessing. In the years prior to the Affordable Care Act, health insurance policies bought on the individual market did not cover mental health services and my parents’ insurance was beginning to throw up roadblocks to covering further care for me.

When my application was complete, the first thing that happened was a denial. According to data from the Social Security Administration itself, it denies an average of 64 percent of applications either on technical or medical grounds. The appeals process is brutal and involves either asking for a reconsideration of your application or a hearing before a federal administrative law judge.

The denial was devastating. My Medicaid benefits were at stake. I was completely uninsurable pre-ACA and unable to work unless my depression was treated. I wanted to work. I didn’t want to get the disability benefits and just do nothing. I lived with my parents and didn’t need SSI. I needed the medical benefits though, and one cannot get those without applying for Supplemental Security Income.

In 2013, some progress was made. My hearing before a federal ALJ was fully favorable: I got to keep my Medicaid benefits. In 2014, I was hired by Home Depot as a garden loader. It wasn’t exactly a glamorous or well-paying job— only six hours a week loading mulch into peoples’ vehicles—but it gave me a sense of purpose and was better than simply being on SSI.

That’s when the trouble started.

Social Security started docking my SSI benefits based on my paychecks and demanded to see proof of my assets and how much money was in my bank account. There’s a $2,000 asset limit for SSI and Medicaid. You go over it, even by a cent, and everything is at risk. Certain assets, like a car or home up to a certain value, are excluded from this limit. I am still subject to the $2,000 asset limit even today.

On one hand, it was made this way to make sure only the poorest of the poor applied for SSI. On the other hand, many disabled people from middle class families like me can’t get the coverage or care we need from private health insurance.

I had to visit my local Social Security office several times to sort out the issue before I joined a program called Ticket to Work that let me report my wages and keep my healthcare, although my SSI benefits were reduced based on what my paychecks were.

The Ticket to Work program is a voluntary program run by SSA for disabled beneficiaries who want to work. It connects disabled people with organizations known as “employment networks” which help disabled people find employment. An employment network of the beneficiary’s choosing is assigned a ticket and can access federal funding to provide a variety of vocational rehabilitation services while the beneficiary keeps some of his benefits and healthcare.

SSI and Medicaid are linked together in a kind of symbolic dualism that complicates efforts at reform. Policy makers and legislators from both parties are trying to change things, but progress has been very slow. The most significant reform was the 2014 bipartisan passage of the Able Act, which created tax preferred savings accounts for disabled people to save money without risking our SSI and Medicaid benefits.

Other proposals from Democrats have included raising the asset limit and SSI benefit amounts. However, given the national debt and the historic levels of division in government, these types of sweeping reforms seem unlikely to gain ground.

Alternatives are possible. The easiest way would be for Congress to just unlink disability Medicaid eligibility from SSI eligibility. SSI could still exist as a separate program and states would then be free to create their own application and screening processes for disabled applicants who need Medicaid.

Some states, like my own Pennsylvania, have Medicaid buy-ins that let disabled people who work pay a premium to keep their Medicaid coverage. Not every state has such a program though, and restrictive asset limits often still apply. Allowing disabled people to keep access to healthcare while working is a sure way to promote independence.

We should also change expectations surrounding young disabled people themselves. Consigning disabled people to a life of poverty on SSI or in crowded institutions belongs in the dustbin of history. We can and should make it policy that employment should be the first and preferred option for people with disabilities. SSA is required to have transition plans for teenagers on SSI, and redetermine eligibility, but many end up getting SSI again as adults. Employment is an integral part of independence and disabled people should have that opportunity.

A blanket Temporary Assistance for Needy Families (TANF) style work requirement doesn’t seem to be good idea for people with disabilities, but Congress should consider legislation requiring certain disabled people under the age of 65 who are applying for or receiving SSI benefits to either actively participate in the Ticket to Work program or work with their state vocational rehabilitation agency as a condition of receiving benefits. I think such a policy should be targeted to SSI cash benefits only and not Medicaid.

I had to learn the hard way about navigating disability benefits and employment. I hope and pray that over the next decade there will be changes in how we think about disability issues and independence. The founding fathers included this statement in the Declaration of Independence, “We hold these truths to be self-evident, that all men are created equal.” Our public policy has historically not always given disabled people their due in regards to these words, but I think now is the perfect time to change things and give disabled Americans a shot at the American dream.

Michael Lado is a writer and healthcare professional who lives in Pennsylvania. His writings have appeared in the Mighty, the Republican-Herald, the South Schuylkill News, and Yahoo News.

This article was supported by the Ewing Marion Kauffman Foundation. The contents of this publication are solely the responsibility of the authors.