Difficult Conversations

Koan at UICH

Last fall, I had a conversation with one of my best friends about Medicaid and Social Security Insurance (SSI).  My friend (I’m not going to name names, but most who know me can figure out who it is…) was (is) philosophically opposed to government involvement in healthcare.  To give additional context, I love this person like a brother. He would be the person I would use my one phone call on if I were ever in jail. I trust him implicitly.  He and his family have done so much to help my family over the years. But, this difference in philosophy (which for Koan is a true existential threat) is really difficult for me to square.  Frankly, it’s not an easy thing to talk or write about.

My friend is a smart, caring, and a generous person.  He believes very strongly in individual rights, freedoms, and responsibilities.  From what I gathered, he believes individuals should be self-reliant and that many social programs are not only fiscally wasteful but have a corrosive effect on human agency.  He has developed his opinions about Medicaid and SSI filtered through this type of lens. As you might guess, he’s not extremely supportive of either program.

During our conversation, he said something that has stuck with me ever since.  I asked the question, “Do you believe our government bears responsibility for caring for vulnerable and disabled people like Koan?”  His answer was another question, “Yes, but to what extent…?” At the time didn’t know how to process this type of response. It was, as you might imagine, a rather heated (but still civil) conversation.  I regret that didn’t give him a very coherent response. I would guess that like me, his views on the topic have evolved since our conversation. He’s a really bright guy. But, as I’ve reflected on his question, it’s clear to me that his question was chalked full of misunderstandings about what Medicaid and SSI are and how they function for people with disabilities.  After all, how could he know the “ins” and “outs” of these complex systems? I’m still learning to navigate them myself after ten years of experience. But, I’ve been unpacking this conversation in my head for months. I’d like to give a written response here in the hopes that someone else may find it useful.

I’m certainly no expert on Medicaid and SSI myself.  But, over time, here’s what I’ve come to understand about why they are so essential to Koan.  Medicaid programs are funded by the federal government, but the actual programs are administered and run at the state level.  In other words, the Feds provide the dollars and States determine how to spend them. It’s a complex layering of policy and bureaucracy.  

Much of our need is dependent on Jeri and my goals for Koan as he grows up.  As I’ve said, before, we want Koan (and all of our kids) to be healthy, independent, and happy.  For Koan, we believe that means living a life outside our home, probably in a group home setting.   To make this happen, we will need significant assistance from Medicaid and SSI.  We would hate to see him living in an institution.

The first really significant thing to understand about this plan is that for Koan to qualify for these essential services as an adult, he can have almost no assets to his name.  He has to live below the poverty line. If he would personally receive money, property, or any other assets that pushes him above the poverty line, he will no longer qualify for these services.  Maintaining this balance takes really careful planning to ensure that he will be able to enjoy a life worth living.

Social Security Insurance (SSI) will give him only the barest of necessities — a few dollars for rent, food, and essentials each month.  It will be incumbent upon my family to make up the difference so he does not live in squalor. We can add these supplemental touches to his life as long as we are around (alive).  Once we depart, we’ve setup a special needs trust that one of our surviving family members will need to execute to keep up with Koan’s needs. So, my family (and any family that has the means) will always carry a really significant financial burden to support Koan.  So, our existing system has some very strict limits in place to keep spending of public dollars down.

Koan will need basic health insurance to cover ongoing healthcare needs once he’s an adult — some that are specific to him like mobility appliances (wheelchairs) and sanitary adult diapers as well as other more mainstream services that all of us require as we age.  But, the day is coming where Jeri and I will no longer be able to physically care for Koan. The big question is what do we do then? Again, we hope that he can live in a group setting, not an institution. If we are able to find him a group home, his SSI benefit might cover rent and very, very basic living expenses.  This assumes we can find a provider to take him at what the SSI rate pays. To ensure a satisfactory arrangement, Jeri and I are strongly considering purchasing a house for him and working with a care provider to manage it. This makes the college tuition payments I’m making for my older children seem downright reasonable.  

In Iowa, we fund Medicaid for individuals at two rates: one for people who live in the community and one for people who live the two state-run institutions.  While I don’t have the figures in front of me, I can say with certainty that the institutional rate is much higher. For most people with a disability, institutional living is a pretty bad deal.  They don’t live as long and are often far less happy. The sad irony is that here in Iowa, the privatized Medicaid system has cut so many community living programs that it has forced many disabled people back into the more expensive and lower-quality life of institutions.

If Koan keeps on his current developmental trajectory, he will require 24-hour care when he grows up.  He will need assistance with feeding, sanitary needs, and mobility. These services will come from Medicaid.  Again, it’s less expensive to do this in the community rather than in a state-run institution. In addition, my family will likely supplement the cost for this type of care and remove even more burden from taxpayers.  We’ve engaged with a financial planner to create a life plan for Koan. This includes saving money for his anticipated living costs, working through new life insurance policies to seed his trust.

In all my years of visiting with people about Koan, I have not run into any people (and I’ve talked to many from all across the philosophical spectrum) that don’t believe it’s our government’s duty to care for vulnerable disabled people.  No one will admit to wanting to go back to the days when the only thing available was grossly underfunded, understaffed, and unsafe institutions. But, that’s where our current policy direction is taking us. It’s clear to me that most of our local, state, and federal policymakers don’t understand this either.  At the Ask Iowa Together We Can conference in May, Rylin Rodgers said something to the effect that people with complex medical disabilities are the “canaries in the coal mine” for policy change. When policies cut funding, this population feel it first and most acutely. She’s right on the money! This is why this philosophical debate is really an existential threat for Koan and people like him.

So, to sum it all up:

  • The government SSI benefit is incredibly frugal. People with disabilities are getting only enough funds to live at our current poverty level.  
  • It costs more to for a disabled person to live in an institution than it does to live in the community.
  • Institutional life is bad for most people.
  • Families and caregivers have a tremendous financial stake in the care of a disabled person.
  • Families are looking for a commitment that our government will continue to fund these programs at appropriate levels to maintain these very minimalistic services (which would be impossible for ordinary families to sustain on their own).

I would ask that everyone reading this consider asking your state representative, your state senator, as well as your federal representative and federal senators their position on these programs.  In Iowa, any response that supports the current privatization of Medicaid is a bad answer. And, policymakers should be called out for supporting bad policy. On the federal level, any policy that reduces the SSI or Medicaid funding also almost certainly bad policy.  Asking these types of questions in town hall meetings or other “meet and greet” encounters really has a huge impact on how the officials think about policy. So, if you go to such things, please speak up. Of course, I would also ask that you vote your conscience on these issues in November.

Finally, aside from the altruistic desire to do the right thing for vulnerable people, why should the average person care about this issue?  What most people don’t think about is that any one of is is just one accident away from being fully reliant upon these types of services, too.  A traumatic injury to the brain or spine would put an able-bodied person in Koan’s shoes instantly. It could be me, you, your spouse, your child, your mom, or your brother.  It can and does happen to anyone. So, you don’t need to be the parent or caregiver to a person born with a disability to care about this issue. At its core, these types of safety net programs are around for the same reason we all need insurance (health, home, auto, or life).  They provide peace of mind and are there just in case the unimaginable happens. Supporting Medicaid and SSI is in all of our best interests.

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