In this episode, I am beginning a series that could possibly be the last of this podcast. It might not be. But it’s a series I need to get finished in case this is the last.

Unless I pull off a minor logistical miracle sometime in the foreseeable future, I will be leaving the house that I have lived in since I was a few weeks shy of my fourth birthday. I will be moving into a skilled nursing facility where I hope to live out my days in comfort.

This series will chronicle my battles to receive the benefits I need to live a safe and fulfilling life. It will lead up to my current situation, which has led me to conclude that it’s time to move on to a different setting. I have no idea how long this series will take. It’s a long story.

Hello, this is Chris Young. Welcome to Episode 113 of Contemplating Life.

In this episode, I am beginning a series that could possibly be the last of this podcast. It might not be. But it’s a series I need to get finished in case this is the last.

Unless I pull off a minor logistical miracle sometime in the foreseeable future, I will be leaving the house that I have lived in since I was a few weeks shy of my fourth birthday. I will be moving into a skilled nursing facility where I hope to live out my days in comfort.

This series will chronicle my battles to receive the benefits I need to live a safe and fulfilling life. It will lead up to my current situation, which has led me to conclude that it’s time to move on to a different setting. I have no idea how long this series will take. It’s a long story.

As always, I have to tell a complicated story from the beginning. So here goes…

The solar system was formed, the Earth cooled, dinosaurs came and went, humans evolved, and I was born with a genetic neuromuscular disease called Spinal Muscular Atrophy Type 2.

My parents first noticed something was wrong when I was nearly 2 years old and still not crawling or walking. They took me to a Muscular Dystrophy clinic at Riley Children’s Hospital here in Indianapolis. They didn’t know what I had. They knew it wasn’t the most common type of MD, known as Duchenne muscular dystrophy or DMD. Those kids don’t have onset until age about 6 or 7. In those days, their life expectancy was seriously short of 30 years, and I lost some friends with DMD in their teens. So, the doctors figured whatever I had, it had to be worse than DMD, and they didn’t think I would live very long. My mother rushed me through the Catholic sacraments at an age earlier than I might have otherwise participated.

I was unaware of their prognosis. However, when two of my friends with DMD died at ages 16 and 18, I began to fear for my own mortality.

I’ve often said that, over my entire adult life, I felt as though I had only about five years to live. Well, maybe 10 years in my 20s and 30s, but certainly five years after that.

As a consequence, we made absolutely no plans or provisions for what would happen to me when my parents were dead or otherwise unable to care for me.

In contrast, consider my friend Christopher Lee. He had severe cerebral palsy and was expected to live a normal lifespan. His mother, Muriel, was constantly concerned about what would happen to him when she and his father, Ralph, were no longer around. Muriel had severe Type 1 diabetes, and Ralph had a heart condition. Muriel expected to be the first to go, but sadly, Ralph passed away from a heart attack. Muriel also outlived Christopher, who only made it to his mid- or late-30s.

I always thought it was ironic that they spent all of that time worrying about what to do when Christopher outlived them. In contrast, I spent no time worrying about what would happen if I outlived my parents.

I think there is a mistaken opinion that it’s easy to receive government benefits, but they make you jump through considerable hoops.

I first encountered difficulties with government benefits when we discovered Supplemental Security Income (SSI). It is a federal benefit for low-income disabled and elderly people. Typically, these are people who are ineligible for other benefits such as Social Security Disability. Although children can receive SSI these days, I believe that when I was a young man, I became eligible at age 18. I think I might not have applied until I was 19. I don’t recall the exact timeline.

My application was denied. If you were a full-time student, you could not qualify for SSI. I was already enrolled at IUPUI, working on my degree in computer science. One of the requirements to receive the benefits was that you be evaluated to determine whether you could be employed. They would send you to the Indiana Department of Vocational Rehabilitation. We called it Voc Rehab for short. I had already been to Voc Rehab. They were paying my college tuition.

If I had applied for SSI first, let them send me to Voc Rehab, and they determined I was college material and sent me to college, I could keep my SSI benefits. Because I did it in the wrong order, I was ineligible.

My only recourse would be to drop out of school, apply for SSI, get accepted, go back to Voc Rehab, get evaluated, which would show I was college material, and then go back to college and keep the SSI benefits.

I went to a free legal clinic to get legal representation. I didn’t have any income. I was an adult. I qualified. We filed an appeal based on the idea that it was ridiculous for me to drop out of school just to get the benefits and go back here again. The appeal was denied, and I didn’t pursue it any further.

Sometime in March or April 1977, I took a job as a student programmer in the Indiana University Department of Medical Genetics. I covered that story in previous episodes. The department business manager was a guy named Randy who was a semi quadriplegic from a spinal cord injury. He filled out all of my employment paperwork.

In May of that year, I was joined by three other student programmers. One day, we compared our paychecks and noticed that they were making more than I was. Further investigation revealed that they were not having Social Security taxes withheld. Apparently, there was a loophole. If you were a student employee, you could opt out of that withholding. Randy hadn’t told me about the loophole, and I was having FICA taxes withheld. I decided not to pursue it. I thought maybe I would need those FICA taxes someday. It turns out, I was right.

After I graduated with my BS degree in computer science, I was promoted to a full-time employee at the Genetics Department.

In the spring of 1979, I developed congestive heart failure and had to quit work. I was eligible for permanent disability insurance through the University, and I received monthly benefits from them for the next five years.

I also applied for Social Security Disability. That’s when I realized I had to work under Social Security for at least 8 calendar quarters. If I had opted out of FICA withdrawals like the other student programmers, I would not have accumulated enough quarters to qualify for SSDI. I don’t know if Randy realized that, but he did me a great favor by not telling me about the loophole.

Anyway, I applied for Social Security disability. There is a two-year waiting period after the onset of your disability before you are eligible for benefits. I always sarcastically said that the reason was they wanted to wait to see if you died first.

I had a difficult time convincing Social Security that a heart condition was sufficiently severe to keep me from working a desk job as a computer programmer. Eventually, we submitted enough material to convince them I was eligible, and I began receiving monthly Social Security Disability Insurance (SSDI) benefits. I still receive those benefits today. I get about $1300 per month.

I also became eligible for Medicaid. I decided to stay in my father’s insurance. I was eligible as his disabled dependent. He had pretty good insurance.

When my mother began having serious health issues in her early 60s and eventually lung cancer, which took her life, we began scrambling to deal with the previously unimaginable idea that I was going to outlive both my parents.

I applied for Medicaid sometime in 2008. I don’t recall exactly when. There are a variety of programs called Medicaid Waivers available. One program is called the “Aged and Disabled Waiver.” At age 53, I don’t think I was “aged” enough, but I was certainly “disabled.”

The other was the “Developmental Disability Waiver.”

Now we had to answer the question, “Am I Developmentally Disabled?”

That’s not so easy. The definition of developmentally disabled, or DD, has changed over the years. The original definition stated that the onsets had to occur before age 22. That covered the “developmental” aspect. If it came on later, it didn’t affect your development. Then they listed 4 specific diagnoses that would qualify.

So, my friend Christopher Lee, who had cerebral palsy, was definitely DD. My neuromuscular disease meant that I needed almost exactly the same kinds of services as he did, but my disability was not enumerated. The “other conditions” clause only applied to things similar to an intellectual disability. Things similar to or requiring similar treatment as cerebral palsy didn’t count.

Somewhere along the way, they modified the definition. You could either be grandfathered in under the old definition or use the new definition. The new version requires onset prior to age 22, is likely to persist indefinitely, and results in substantial functional limitations in at least three of the following areas of major life activities:

Under this new, functional definition, I would be considered DD because I lacked the ability in four of those areas, specifically: self-care, mobility, capacity for independent living, and economic self-sufficiency. Regarding the economic issue, by this time, my work-from-home computer consulting business had failed, and I didn’t have sufficient stamina to work enough to support myself.

So, which waiver? A&D or DD?

The DD waiver was supposedly more likely to get me more benefits and possible placement in a group home, which would be way better than a nursing facility. On the other hand, there was a 10-year waiting list to get on the DD waiver. I seem to recall there was a rule that if you could get on DD, you couldn’t apply for A&D.

To get on the DD waiting list, they had to find out if I was DD. Part of that process was to determine if I was, pardon the terminology, mentally retarded. I had to take an IQ test to find out. The fact that I had a bachelor’s degree in computer science wasn’t evidence enough that I wasn’t retarded.

Someone came to my home and gave me a completely oral, modified IQ test. I didn’t have to read or write anything. The test was designed to carefully measure different levels of intellectual disability. It didn’t care if you were a genius or not. It was skewed to differentiate between certain cutoff points, such as IQ scores of 50, 60, or 70. There were only about 4 or 5 questions I found challenging, and I aced them all. The results said I had an IQ of 130.

A few years later, I took a legitimate written IQ test to see if I would qualify for Mensa. That requires that you store in the 98% range. I don’t recall my exact IQ. It was in the mid-120s, but it was a point or two short of qualifying for Mensa.

So, I got on the DD waiting list, and while waiting, I qualified for the Aged and Disabled Waiver.

I don’t recall the exact year when my parents and I consulted with a disability attorney. We were trying to plan for my future. We were by no means rich. However, Dad had accumulated a small savings of around $45,000. The house was paid for, as was my wheelchair van. The lawyer didn’t have any good answers for us because there weren’t any. He joked, “You need to win the lottery.” Like we didn’t think of that already. Some advice, huh?

Any calculations about how much I might need to live on when they were both gone included a variable: “How long until Chris dies?” That becomes a recurring theme in this endeavor.

The main reason to get off of my dad’s insurance and on Medicaid was so that I could get home health aides to help out my dad caring for me.

My cousin Angie is married to a wonderful woman named Shelley, who worked at a home healthcare agency. We met with Shelley to brainstorm, but again, there weren’t many good solutions. When it came time to find a home health aide agency, we went with the one that Shelley worked for. Or at least, I thought we did. That agency was actually three separate agencies owned by the same people, and Shelley worked in a different division that dealt mostly with intellectually disabled people in group homes, not the home health aide division I was dealing with. They sent me good people, but the people in the office were terrible to work with. We eventually moved to a different agency.

I began receiving care in the form of a home health aide to get me bathed, dressed, and into my wheelchair five days per week to relieve dad from some of these responsibilities. He covered weekends and evenings. This began in December 2008. We lost Mom in February 2009.

I’m terrible at remembering dates, but I can figure this one out. I remember those dates because one of my fondest memories was watching the Obama inauguration on January 20, 2009, with my mom and an African-American home health aide named Destiny. Mom and I were lifelong, very liberal Democrats with a passion for social justice. While it didn’t mean as much to either of us as it did to my aide, it meant a lot, and I’m so happy that Mom lived to see Obama inaugurated. Mom would be appalled at our current political situation.

With Mom gone, and Dad continuing to age, we again began to revisit what to do when I outlived him, which now seemed a credible possibility. We knew that if I ended up in a nursing facility, my Social Security Disability benefits would be cut to just $50 per month for minor expenses. We also had to consider what would happen if Dad needed to go to a nursing home. How would we protect his assets for my sisters and me?

There are two varieties of trust funds that can be used to protect assets from Medicaid limits. One is called a Miller Trust, also known as a Qualified Income Trust. It is used specifically to manage monthly income that exceeds Medicaid limits, enabling eligibility for nursing home care. Alternatively, a Special Needs Trust protects assets (e.g., settlements, inheritances) to maintain eligibility for needs-based benefits like SSI and Medicaid.

It seemed to us that a special needs trust was better. I don’t recall how we came to that conclusion. There was an agency called Special Needs Integrity Trust. They would manage your special needs trust for you. They would pool your assets with other clients’ and generate good returns on investment. You would have a debit card that you could use to access your funds. It did require some sort of approval for purchases.

I was a little bit leery because the majority of their clients were people with intellectual disabilities. I didn’t want them to make presumptions about my ability to manage my own affairs. I could just imagine saying to me, “Oh sweetie, have your guardian withdraw the money for you.”

It turns out it was a good thing we didn’t go with that agency. I just did a Google search looking for a link to it. Before I found the agency, I came across an article from the Indianapolis Star titled “Special Needs Integrity accused of having none.” The article, dated November 16, 2015, begins “An Indianapolis nonprofit is accused of withdrawing millions of dollars in excessive fees from trusts owned by people with disabilities, according to a lawsuit filed Monday.” I guess we dodged a bullet there.

Before we did anything, we consulted yet another disability attorney. This one I had a distant connection to. His name is Greg Fehribach. Greg has osteogenesis imperfecta, more commonly known as brittle bone disease. It results in a type of dwarfism in addition to the bone issues. He is a few years younger than I am. He attended Roberts School and was good friends with my buddy Mark Herron, who lived right around the corner from me. One day, while he was visiting Mark, the three of us played Monopoly together, although Greg doesn’t recall that.

Before I discovered computers, I often thought I would go to law school and specialize in disability law and accessibility issues. Greg has the career that I thought I would have if I were a lawyer. I actually rest a little bit easier knowing that he’s out there doing the work I might’ve done but didn’t.

There is probably not a major building constructed in Indianapolis in the past 30 years or so for which he has not served as an accessibility and ADA compliance consultant. I think the Colts and the Pacers probably have him on speed dial. When Saint Gabriel’s Church renovated our sanctuary, Greg was on the team with the architect to consult on disability issues. He met with other disabled people in the parish and me to talk about our needs.

Dad and I went to his office downtown and talked about my situation. He told us we didn’t need to use an outside agency. He or any other knowledgeable attorney could set up a special needs trust. Eventually, we did set up our own Special Needs Trust. We went with a different lawyer, and I don’t recall why we didn’t use Greg. We found one on the west side, which was easier to get to than Greg’s office downtown, so that may have been it.

The “Trust for the Benefit of Chris Young” had my dad as trustee, and upon his death, my sister Carol would have responsibility. If anything happened to her, it would fall to my other sister, Karen. We also designated the same people in that order as my designated medical representative, and Carol was given a power of attorney for both Dad and me. We would still have control over everything, but it would allow her to handle things if Dad couldn’t, and it would mean she could sign documents for me since I couldn’t.

The inability to sign documents is a problem for a lot of disabled people. I heard a story about Professor Stephen Hawking. He occupied the same position at Cambridge as Sir Isaac Newton. They have a large logbook that is signed by Sir Isaac and everyone else who has ever held that position. When Hawking signed the book, it was the last time he ever signed his name or wrote anything in his own hand again.

My last signature was much less dramatic. I signed all the trust documents, power of attorney, and medical representative documents. Well, that’s the last time I ever signed documents in ink. These days, electronic signatures are common. Sometimes you just have to type your name, and it works as an electronic signature. Other times, it lets you draw your name with the mouse. I’ve discovered that I have enough control over my mouse using a joystick to recreate a reasonable facsimile of my original signature.

Eventually, we expanded my help to seven days per week. Dad was still able to put me to bed at night, and, in a pinch, he could get me up. However, it was difficult.

Since 2008, when I first began receiving help from home health aides, through that piece my father’s death in February 2019, and up until today, I cannot begin to count the number of different home health agencies and caregivers that have come and gone. Most only last about six months. The main reason they leave is that they cannot make ends meet on a part-time salary. I only need a couple of hours in the morning. Unless the agency can find them another client whose hours don’t interfere with my needs, they can’t get by on just working for me.

Except for a small handful, I don’t remember the names of many of the people who worked here, but there are exceptions. One of my favorite aides of all time was a wonderful woman named Riah. She worked with me for about three years. We grew very close. She had to quit when she developed severe back problems.

Another was my friend Rick Ruiz, who worked here for three years, but also developed health issues and had to quit. The last time I saw him was at my dad’s funeral. Rick died of cancer shortly thereafter.

I will talk about other caregivers who are very special to me in later episodes.

Because some of these people have come and gone so quickly, I’m sad to report that I don’t remember the names of all of them or all of the agencies I’ve used. Sometimes, the agencies are just too difficult to work with. Other times, they simply don’t have enough staff to cover my needs, and I have to look elsewhere. So, it’s been a real struggle for years to keep people here. I’ve been blessed with a lot of good ones, but I can’t keep him here forever.

I’m fortunate to have very good people working for me right now. We found a way to bypass the middleman and do what is called “self-directed care.” I don’t have to deal with the intermediate agencies. We’ll talk about all of that in a future episode.

In our next episode, I will talk more about the struggles I’ve had maintaining Medicaid eligibility and the immense challenges I began to face when my father’s health deteriorated from cancer.

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I will see you next time as we continue contemplating life. Until then, fly safe.