Remember in November

Koan in art class

I really like this picture.  It was taken at Prairie Ridge during art class this spring.  The class was doing chalk outlines on the playground. While Koan can not reciprocate by drawing his partner’s silhouette, he clearly enjoyed the experience of having his done.  It’s a simple thing, but I love this example of inclusion. The other child who drew his outline (you can only see the hand and chalk in the photo) looks like they took some time and put some thought into the process.  It also meant they had to get into Koan’s personal space. As adorable as I think Koan is, he does look and act differently than most ten-year-olds. The fact that there was another child willing to do this with him warms my heart.

From a bigger picture lens, that’s one of the main things I want for all of my children: meaningful social interactions with others.  It seems like that’s a pretty important part of being happy. Up until this point, we’ve been really blessed with numerous, small but significant events to fill Koan’s life with this type of activity.  One of my overarching worries for him is wondering what will this look like as he gets older. Right now, our family provides a lot of this, but we also get incredible support from organizations like The Arc.  Koan will start summer camp in June — seven weeks of full days — swimming, going to the park, making art, etc… It’s these types of small, inexpensive experiences that make life worth living. And, all of the programs offered by The Arc are funded in part by Medicaid.

I hate to sound like a broken record, but Medicaid is so crucial to Koan present and future.  There’s an ongoing Medicaid crisis in Iowa right now. Our most vulnerable populations — the disabled and children — are being grossly underserved by the privatized managed care organizations running Medicaid.  People are dying! What’s more, not only is this program failing to meet even the most basic care needs of the people it serves, it is more expensive to run (costing all Iowans more in taxes) than the previous state-run program.  

Those who know me, understand that I don’t like to participate in partisan politics.  I’m a centrist and independent philosophically. But, after continued, persistent communication with Governor Reynold’s office, I am convinced by her actions (or lack there of…) that she and her administration has no intention of meaningfully reforming or removing the disaster that is privately managed Medicaid in Iowa.  After watching the Democratic gubernatorial primary debate, I am also convinced that whoever wins that race will make removing privatized Medicaid a top priority. So, I’m going to do something I rarely do, I’m urging anyone and everyone I know in Iowa to vote Kim Reynolds out of office in November.

I hate the fact that our current system has painted me into a corner where I need to make a partisan plea to preserve the future for my child.  System supports like Medicaid should not be subject to partisan politics. And, honestly, I really don’t think there are many people who want to endanger Koan by implementing terrible programs like privatized managed Medicaid care.  But, perhaps if we all send a strong enough message in November, all candidates for office (regardless of party affiliation) will realize that programs like Medicaid should be preserved in order to align with American and Iowa values.

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.

Waiting for Results

I am Medicaid IowaA few weeks ago, I wrote that we had asked for approval from our insurance provider to do some additional genetic testing on Koan to see if they could pinpoint the cause of his disability.  The good news is that we have been approved for more testing.  We got approval on a Friday and I took Koan down to the University of Iowa Children’s Hospital on the following Monday to do the blood draw.  I wasn’t sure what time the lab closed at the hospital, so I figured it would be best to get him down there before 4:00 PM.  I was assured that we would not need an appointment to do the draw.  Here’s the story of that day.  There’s nothing earth-shattering here.  There are some cute moments and the rest is just day to day “life with Koan” anecdotes.

I arranged to pick Koan up early from school that day — around 3:15.  It takes about 30 minutes to get to the hospital from the Prairie campus.  Koan’s school day normally finishes around 3:45 PM. He was in the office waiting for me when I arrived.  It was great — when he saw me come in the office he flipped out.  There was an ear-splitting screech of joy and a great deal of happy-dancing in his Convaid.  He nearly jumped out of it.  There was so much commotion that the building principal stuck her head out of her office to see what was happening and to make a joke.  Stacy Pasker, Koan’s teacher, told me later that she heard him, too, and knew that I had arrived.  It’s pretty fun to get that kind of greeting.

I packed him into the car and folded the Convaid into the trunk.  As we exited the Prairie campus, I turned right coming out of the roundabout on Kirkwood and headed south.  Koan was already having a full-blown dance party in the back seat of the Civic (shaking the whole car).  As I did this, he took it to a new level because he knew we were not heading home.  Like his old man, Koan loves to go to Iowa City.  So, as we got on the ramp to  380 south, became even more excited.  I actually thought he might pass out or hyperventilate.

By the time we got to UICH, he had calmed down a bit.  I navigated the Civic through the underground parking ramp and found a handicapped spot a couple of levels down.  I then got the Convaid out to the trunk and set it up.  It’s always a bit of wrestling match getting Koan out of the Civic. It’s much easier to move him in and out of the van.  Not only is he tall and rather heavy now, he thinks it’s great fun to swipe the glasses off of my face while I’m using both hands to reach down and wrangle him out of the backseat.  This can be a chess match.  I try to find ways to pin one (or if possible) both of his arms so he can’t get to my face.  This particular time, I was able to restrain the left arm (his most dangerous weapon), but he cleverly used his right to swing across and connect with my nose.  To both of our disappointment — I was unhappy he hit me and he wanted to see the eyewear go sailing — my glasses were merely displaced (pushed to far right of my face and precariously dangling from my nose).   I also grabbed the #IamMedicaidIowa sign I had made.  I wanted a picture of Koan in UICH to share.  The #IamMedicaidIowa was a media campaign organized by Disabilities Right Iowa.  I would encourage everyone who cares about Koan to participate.  It’s super-simple.  Just take a picture with a homemade sign.  You don’t need to be disabled or a caregiver.  DRI has even provided all the text you can use to share.

I dropped him in the Convaid.  Straightened my glasses and strapped him down.  As always, I started with his feet (so I don’t get accidentally kicked) and moved up to his belt and arms.  We then wheeled to the elevator to get into the hospital.  When we arrived on at the lab doorway on the second floor, a friendly lab tech motioned us to come inside.  I explained that we didn’t have an appointment, but that genetic counseling had requested a blood draw.  He looked us up in the workstation and found the order.  I started unbuckling Koan from his shoulder straps.  I would need to take off his coat so the tech could draw blood from his arm — at the crook of his elbow.  Koan was still pretty amped up from our trip, so it was clear that we were going to need more help if the tech was going to be successful in drawing blood.  So, I let him know that and he called into a back room for some help.

Like most of us, Koan does not love needle punctures.  In the past, when he’s gotten a significant shot of medication he has given me (and Jeri if she’s there) a monumental look of betrayal when the stick happens.  Then there are tears and howls of outrage.  So, I was a little worried how this would go.  The two young ladies, med students I’m guessing, came in from the back of the lab to assist the tech.  That was perfect!  Koan loves the ladies — and for the most part — he’s popular with them, too.  He immediately starts flirting with them, coyly smiling, giggling, raising his eyebrows, etc…  Each one of them took arm to hold.  They also reciprocated the flirting — telling him how cute and handsome he is, etc…   This worked like a charm.  The needle went in, but Koan was so busy with the two students that he didn’t even realize he’d been poked.

After taking out several vials of blood, the tech removes the needle and bandaged him up. Koan was still having fun with the two lab assistants.  At that point, I asked one of the techs to hold up the #IamMedicaidIowa sign in front of Koan so I could snap a picture.  Fortunately, one of them agreed to help.  I then put Koan’s coat back on and buckled him fully into the Convaid for the trip back to the Civic.

When we arrived back at the car, I saw that in my haste to get Koan secured in his Convaid and up to the lab that I had left the back door open.  So, the whole time we were up in the lab, the back door of my car was wide open.  Luckily, nothing was taken.  We repeated our chess match while putting him into the car.  That time around, I fully won with no blows landed to my face.  Koan was pretty worn out from all the excitement and that made the trip home a bit easier and less dramatic.

I don’t know how long we’ll need to wait for results from this test.  I would imagine it will be several weeks before they will get back to us.  I’ll share information here when we do get it.  I will be pretty surprised if he doesn’t come back with at least some Angelman markers in his results.  But, who knows… Koan has a long history of being unexpected.

Arc March 2018!

The Arc March is upon us again!  It’s on St.Patrick’s Day this year.  So, I’m guessing there will be green shirts this time around.  As I’ve said before, Koan’s life would be exponentially more complex and difficult without the Arc of Eastcentral Iowa in our lives.  The before school respite care is really essential for us.  That’s what makes it possible for Jeri and me to continue to both work.  The care workers who have come into our home have been 2nd to none!  There are also so many other wonderful quality of life opportunities.  Koan attended the Arc’s summer camp for six weeks in June and July.  It was truly amazing.  There were so many of Koans favorite activities: swimming, playing at parks, eating… None of this is possible without support from the greater community.  So, please consider making a donation either directly to the Arc or you could use Koan’s donation page located here:

Please share this link as well if you are so inclined.

The Koan Action Network — Please Sign Up!

As I’ve said many times before, having Koan in our lives is a wonderful, joyous adventure.  But, there are things I worry about.  This type of story is what I spend a lot of time thinking about — and it really scares me.  Our vision for Koan is to become a happy, healthy, and independent (as possible) person.  This means living on his own in the community, probably in a group setting.  Instuitutional living is the right thing for some people.  But, for most people with disabilities, instituinalization means a life of depenence, loneliness, and unhappiness.  In our current system in Iowa it also costs more to institutionalize a person than it does to provide community living.  So, what’s happening to these two young men is one of my nightmare scenarios for Koan — being removed from community living and being institutionalized due to cuts to programs like Medicaid.

More Koan Christmas Fun.

It’s no secret that leaders in the House of Representatives and Senate will be looking to make significant cuts to programs like Medicaid in the 2018 legislative session.  These types of cuts will make scenarios like the two young men in Cedar Rapids much more common.  And, of course, I worry that this will be Koan’s fate as well.  These types of deep cuts in social programs for disabled people are immoral and unconscionable.  I need everyone who cares about Koan to help us hold our representatives accountable for any actions they may take that would damage Koan’s future.

The cynical part of me believes that some of our elected officials do some cruel policy/electoral calculus when considering cutting social programs like Medicaid.  I suspect that they may believe that since disabled people often don’t vote, that there will be little pushback for making cuts to spending.  What I would like to prove this type of thinking wrong.  But, I need your help.

Heres’ what I’d like to do.  I would like to organize a “Koan Action Network”.  A group of people who love and believe that Koan should have access to programs and supports that will give him the opportunity to lead a healthy, happy, independent life.  To do that, we will contact (write, call, email) elected officials when there are policy decisions being considered that will have an impact on the supports Koan will need for his future.  I don’t anticipate this will be a difficult commitment.  There may be prolonged periods of time where we do nothing.  But, there may be times when I ask that we all make contacts frequently to ramp up the intensity of the message.  We need to let our elected officials know that when they make policy decisions that are detrimental to disabled people that there is a community around each disabled person that hold them accountable.

If you are interested, please fillout this very brief Form — it asks for your contact information.  I will create an email and text group and send messages as to the whole group requesting that you contact elected officials when there is an action item.  I’ll provide talking points that identify the problem and what we believe the official should support or oppose.  I’ll also ask that you reference Koan by name because I want them to connect any policy change to a real person.  These communications from me will brief and the act of making a call or writing an email should take less than 10 minutes.  So, this won’t take much time or effort.  But, the impact will be enormous.   These types of contacts really do make a difference.

I would love it if we could make it clear to people in office that when they make a change to a program that negatively impacts vulnerable disabled people that there are 10, 20, 30, 0r even hundreds of voices that will speak for this one person.  If we can get this type of thing going, it will be powerful!

Finally, I do want to be clear that while these calls may feel like you are taking sides in a partisan argument (democrats vs. republicans), I would ask you not to think about it that way.  I view this as a non-partisain issue.  Over the last 8 months I’ve gotten to know people from all different places on the political spectrum — very conservative to very progressive. I have yet to meet anyone who has told me that cutting social programs for Koan is a good idea.  So, this is not about choosing a political side.  The goal here is to safe-guard Koan’s (and all disabled peoples’) futures.

Please sign up if you wish to make a difference and help.


An (a)Typical Morning

Last Monday was a wild morning.  I’m sure that all families have these types mornings like this, but having Koan around always make it a bit more interesting.  On a typical day, Jeri is an early riser and is usually out the door before 6:15 AM.  I get up around 6:00 AM and our awesome respite worker, Adrienne, arrives at 6:30 AM.  On most mornings, I’m heading out to get breakfast about the time Adrienne arrives.  On a normal day, Koan hears Adrienne come in (Jeri unlocks the front door before she leaves) and will let her know if he wants to get up by shrieking with excitement.  Koan’s room is our former office/study located right by the front door.  We moved him from his upstairs bedroom a couple of years ago.  Carrying him up and down the stairs is a major chore.  The current room is far from ideal, but it’s the only feasible space on the main level of our home.  It has two French doors.  Sometimes Koan will even be out of bed waiting for Adrienne and will rattle the doors when he hears her arrive.

I can’t imagine what life would be like without morning respite.  It’s just one of the many amazing services the Arc provides my family.  Adrienne is with us a couple of hours each day — from 6:30 AM to 8:30 AM.  The Arc pays for the first hour of respite and we pay her for the last hour which is more like child care. This is really cool on many levels.  It gives us affordable and safe in-home childcare. Without the Arc coordinating with us on this, it would be so much harder — perhaps even impossible.  This arrangement gives Jeri and I the room to have Koan’s care not interrupt or impact our professional lives.  Without this type of service, it would be hard for both of us to work.  

On this particular day, Jeri got off to a little later start.  This had a cascading effect so that I also had to wait (got to sleep longer…) for her to finish up in our master bath.  By the time I was dressed and ready for breakfast, it was about 6:45 AM.  Jeri had left just after Adrienne had arrived.  Koan was changed, dressed, and his bedding changed.  Most nights, unfortunately, Koan’s briefs (diapers) don’t contain all of his output so many mornings he needs a new sheet and blanket.  Again, Adrienne is really awesome — she takes care of all of that! On this morning, Koan was already scooting from his room to our great room — which opens into the kitchen.  As with nearly all mornings, he gave me a big smile and a giggle as he saw me.  I’m not a morning person, but saying “good morning” to Koan is almost always a bright spot.  As I’ve said before, he’s so genuinely excited and happy most of the time, it’s a contagious feeling and a great way to start each day.

I went about making my breakfast — a bowl of cereal — doing my best not to make any “clanking” sounds that would be upsetting to Koan.  Adrienne was working to get Koan’s meal ready, too.  He had a cup of infant cereal mixed with three containers Yoplait yogurt.  Koan is such a creature of habit.  He will scoot out of his room every morning, but as much as he loves breakfast, he will almost never travel to the kitchen.  As soon as he can see his feeding chair in the kitchen, he stops.  He knows that we’ll pick him up and carry or walk him the rest of the way to the chair.  I think if we really worked on this, we could modify this behavior, but he’s really stubborn and it’s just not that pressing of an issue yet.

Koan and I finished our breakfast about that same time and I began to get ready to leave for work.  As I was heading out the door, I realized that my keys (both for my car and school) were not in my coat pocket as I expected.  They weren’t on the counter where I usually leave them.  After about ten minutes of frantic searching, I broke down and called Jeri.  It was about 7:00 AM.  She didn’t have kids coming in yet, but they would start arriving and need supervision within 20 minutes.  Luckily she answered her cell — not a sure thing that time of day — and I asked if she had seen my keys.  After initially saying, “No”, she checked her own pockets and discovered that she had inexplicably taken my keys as well as her own.  She was apologetic. I was frustrated.  I knew there was no way for her to come back or even somehow meet halfway.  If I wanted my keys, I would need to travel the fifteen minutes to and from (about 30 minutes round trip) Franklin Middle School. I live within a mile of my workplace, so my commute is less than five minutes.  This realization added to my frustration.  I was already behind where I wanted to be in my morning and adding 30 minutes to that was making me less and less happy.  

I called into the basement to wake up my oldest son, Tiber who is 16 and has a car.  He does not usually get up until about 7:45 AM.  So, I get to spread my unhappiness to him as I let him know that he needed to wake up and drive me to work.  After much grumbling, we headed out. As the door closed, I hear Koan erupt — this is not routine behavior and he is sure he’s missing out on something and being left behind — not cool!

Once I arrived at work, I put out the normal Monday morning fires.  I decided that I did want my car for the day, so I asked one of my techs, Chris, to drive me to Franklin to get my keys. Chris graciously agreed to help and we headed over to Franklin.  When we arrived there, I texted Jeri and she met me at the door.  I could tell that her morning was also off to a great start as she asked if we had room to take a few of her 6th graders with us back to Prairie.  Chris and I were nearly back  — on Kirkwood Boulevard, just seconds away from the office — when my cell rang.  

It was Tiber.  He was speaking fast and I couldn’t  understand him.  I finally got the keyword from him — “Convaid”.  Koan’s Convaid is his wheelchair that we use to move him to, around, and from school.  It’s essential.  He must have it to function.  I also realized that Jeri and I had taken Koan to the mall last weekend to shop.  We had put the Convaid in Jeri’s van and it was still there — back at Franklin.  So, I had Chris drop me at my house.  It was about 8:30 AM and Koan’s bus would be arriving in seconds.  I told Adrienne to wait for the bus and let them know that I’ll be dropping Koan off at school myself.  I grabbed Koan — who was already in his coat — snagged his backpack and the two “anti-tippers” we need to put on Koan’s Convaid for school.  We remove these when we travel as one of us always has a hand on the Convaid and they make it hard to collapse the Convaid.  But, at school, they need them as he is sometimes left on his own and he might tip over.  Koan is like Tigger — he likes to bounce!  And, even with the tippers, he can really move the Convaid.  This is an issue we will have to deal with in the not too distant future.

As I put Koan in my car, he was ebullient.  To quote my friend Buddy Berry, he was both surprised and delighted — he has realized that he gets to do something special, better than an ordinary day. He was dancing all over the place, making it a real challenge to load him and secure him into the backseat of my Civic.   After I retrieved and cleaned my glasses (he had knocked them from my face), I threw the rest of the gear in the car and head out.  But, I soon realized that I’m nearly out of gas.  Like everyone, Koan has his own idiosyncrasies.  One of these is that he has an active, personal dislike for the Kum and Go convenience store near our neighborhood.  This has been true for years and has been the topic of many discussions.  No one knows why he hates that place.  We’ve all learned to avoid it when he’s in the car if possible.  However, there’s no choice now.  As happy as he was to leave in the car with me, he gives me several shrieks of outrage when he sees me pull into the left turn lane to enter Kum and Go.  

After I fill up the tank and sing a few verses of Wheels on Bus (I’m sure the other morning commuters could hear me…), we hit the road for Franklin, yet again.  The rest of the trip there is uneventful.  Koan is, again, thrilled to be on the road.  I retrieved the Convaid from the van and squeeze it into the trunk of the Civic — a tight fit.  As we head back on Kirkwood Boulevard, there’s a point where we can turn to head back into our neighborhood.  I happened to glance back at Koan as we passed this corner.  As we went by, his face lit up and he screeched with joy.  He realized we were not going back home, but somewhere else.  As we went through the roundabout at the south edge of the Prairie campus, he started rocking back and forth, shaking the car — we are going to school — his favorite place!

By the time I get parked in the handicapped accessible spot in the Prairie Ridge lot, there’s a full-on dance party in the backseat.  I extricate the Convaid from the trunk, expand it, affix the tippers, and hang his backpack on the handle.  I then began the non-trivial task of getting a “dancing Koan” out of the back seat of an economy sedan.  We rolled in the door a little before 9:00 AM — just about the time elementary classes begin.  As I came into his classroom, he was enthusiastically greeted by the paraprofessionals in the room and the other kids.  His teacher, Stacy (who is also awesome!) says, “Did he get the stomach bug that everyone else in the class got this weekend?”  So, I guess we might we have that to look forward to later this week.  As you might expect, when Koan gets sick no one in our house is happy.  But, that’s a story for another day…

Act on Iowa Medicaid

As I’ve said before, there so much joy and wonderment that comes with having a person like Koan around. But, there’s also a fair share of worry, too.  At the end of October, Amerihealth Caritas announced they were leaving the Iowa Medicaid program.  This is a big deal and will impact tens of thousands of Iowans.  Koan won’t be directly impacted, yet.  One of the hardest things to do when caring for a person like Koan is to figure out how to navigate and coordinate services.  So, I thought I’d write a bit about how all of these systems work from our family’s perspective — understand that I don’t have all of this figured out.  But, more importantly, I’m going to try and explain why the Amerigroup defection could impact Koan and what you can do to help him going forward.  

A couple of years ago, the Branstad administration put forth a proposal to privatize the Iowa Medicaid system and moved it through the legislative process. In this new system, the Iowa legislature removed most of the Iowa of Department of Human Services (DHS) ability to administer Medicaid.  And, they gave Medicaid management to three private companies (with very similar names): Amerihealth Caritas, United Healthcare, and Amerigroup.  These three Managed Care Organizations (MCOs) would be responsible for providing services for virtually all Iowans who need Medicaid.

The MCOs were given a flat rate for each patient annually (a per capita spending limit) and the thinking was that this plan would not only be more cost-effective because it controlled spending, but the quality of care would be better due to market pressure to provide good service.  It’s hard to argue with either of these points.  But, good ideas are not worth much if they are not implemented well.  Medicaid is a big umbrella program.  It covers both low-income and disabled people — a large, diverse population.  It’s a really really complex, multifaceted system.  I would argue that Medicaid is also a high-reliability system — like a bridge or a nuclear power plant. There’s very little room for error — it must work correctly and predictably all the time to fulfill its main function. There’s little or no room for large-scale, iterative improvement.  

The full conversion to the privatized system was done in less than six months.  This rush to implement is a key factor in why the program is performing so poorly.  What makes this particularly frustrating is that the fast track to rollout was done to minimize political pain and not with the wellbeing of constituents in mind.  Each of the MCOs has lost tens of millions of dollars and Iowa has needed to dip into the State’s “rainy day” savings fund to subsidize and keep the program afloat in both of the last two fiscal years.  Even more troubling is that mismanagement by the MCOs has cost lives.  Disability Rights Iowa has a pending class-action lawsuit against the State of Iowa based upon several deaths related to MCOs inability to provide services.  The personal stories I’ve heard from people who rely upon the MCOs are horrifying.  Essential services such as medication and other medical treatments being denied in long drawn out exchanges that sometimes take weeks.  It’s costing the taxpayers more and it’s directly responsible for loss of life. By any (and every) measure that matters, the privatization of Medicaid in Iowa has failed.

But, like many things with Koan, in particular, issues are not black or white or cut and dried.  To further complicated matters, when the privatization took place, the legislature left a very small segment of Iowa Medicaid in place.  And, because he’s anything but typical, Koan was able to stay enrolled in what was left of Iowa Medicaid through a program called, HIPP — Healthcare Insurance Premium Program.  The way it works is that we keep Koan covered under our private insurance and anything that Wellmark (my insurance provider) won’t cover, Iowa Medicaid will pay for with prior approval.  So, for example, Wellmark will typically pay for about $1,200 of Koan’s AFOs (leg braces).  Iowa Medicaid picks up the other $1,000ish.  In addition, we receive a monthly check (proportional to Koan’s portion our Wellmark premium) as an incentive to stay in the program (to keep Koan on our plan).  We’ve been enrolled in HIPP since Koan was born, and it has worked really well for us.  We’ve gotten what we need when we needed it.  This is a stark contrast from the experiences I’m hearing from friends who are now forced to use the MCOs.  We are so thankful that Koan qualifies for HIPP and we pray each July 1 that he continues to qualify to be enrolled.   

So, aside from altruism, why would I care about the privatization of Iowa Medicaid if Koan is not directly impacted?  It’s very, very hard to hear stories about individuals and families struggling with already complicated lives having to battle bureaucrats inside the MCOs for essential services.  So, it’s pretty easy for me to line up against this type of legislation just based upon that.  However, the main reason does come back to Koan.  We can only keep Koan in HIPP and Iowa Medicaid until he’s 26 (unless the US legislature makes changes to that provision in the ACA).  Eventually, if nothing changes, Koan would be part of this flawed system.  So, I’m starting work now to hopefully change the system for him and all of the others that are languishing under this terrible system.

My goal is that like many other states that have tried privatization, Iowa will reinstate its own Medicaid program again.  One proposal currently being considered is to move all medically complex disabled people back to Iowa Medicaid.  This would effectively decouple the low-income population from the disability population.  I fully support this concept as well.  So, at long last, here’s what I’m asking everyone who loves Koan to do:

  1. Please contact Jerry Foxhoven, the Iowa DHS director, and urge him to support moving all disabled people back under Iowa Medicaid.
  2. Local politics are incredibly powerful.  Engage with your Iowa House and Iowa Senate candidates.  To be crystal clear — I’m talking about specifically the Iowa legislators, not the federal reps like Grassley and Blum. It’s still good to talk to those type of folks, too, but they don’t directly influence Iowa law. When you vote in the 2018 elections next year, please ask your Iowa House and Iowa Senate as well as gubernatorial candidates their stance on privatized Medicaid. If they support this flawed, expensive, and dangerous policy, let them know you don’t approve.  Please consider voting for a candidate that opposes privatization of Medicaid services for disabled people.  

The departure of Amerihealth is an opportunity for the elected officials that initially supported privatization to re-think and re-evaluate the value of this program.  But, even if all disabled people were moved out of the privatized system, the Iowa legislature would also need to allocate resources to rebuild and refund Iowa Medicaid. Your voice and vote really matter.  I strongly urge everyone to get out and talk to your state rep and senator. Ask them not to support privatized Medicaid services for disabled people.  Please speak for Koan.

The Arc’s Medicaid Stories Campaign

I’ve posted a lot about Medicaid in the last few days.   There’s so much more to our lives than battling to maintain these essential programs.  But, Koan (and all disabled people) really do need advocates to step up and speak for them.  This is going to be a long week for our family.  Right now (on Monday), the outlook is pretty good.  But, the voting deadline is Saturday.  There will be lots of pressure and a lot of tweaks to the bill before this is over.  So, it will be hard to hold on to the dissenting votes.  Calls and letters will still be necessary all week. Please call/contact your state’s senators — again even if they oppose the bill — to voice your concerns.  Below is a letter I submitted to the national chapter of the Arc about Koan’s Medicaid story.  These letters are going to be printed and hand-delivered to the Senate today.  Please stand with Koan this week and continue to put up the good fight!

Koan, my youngest son, has global developmental delays.  He is ten years old and doesn’t walk, talk, or feed himself.  No doctor or specialist has been able to tell us why these delays happened.  We named him for the answerless riddles or parables that Zen monks meditate upon to reach enlightenment.  We gave him this name before he was born and long before we knew he would face these types of challenges.  It is, of course, a very fitting name.   While it’s been a wild, wonderful adventure raising Koan, I do have some anxiety when I think about what his life will be like if the Cassidy-Graham Act would pass.  

The supports Koan and our family have received from Medicaid have made life manageable and ensure that Koan is safe and healthy.  In short, these systems have worked really well.    But, I’m deeply troubled by the almost certain disruptions to these essential services in both the immediate future and in subsequent years if Cassidy-Graham is passed.  Here are just a few of the  services we rely upon that come from Medicaid and would be in jeopardy:  

Medical care:  Koan has a seizure disorder and Medicaid provides access to neurological specialists, treatments, and prescription medication.  Also, because Koan is not mobile and non-verbal, he’s dually incontinent.  We can’t run out to the store and buy diapers for a 10-year-old.  This product does not exist in the consumer market.  We need medical grade briefs to maintain a sanitary environment.

Community-based supports:  We rely heavily upon local organizations, like the Arc, to provide respite services and other quality of life experiences for Koan.  These experiences add richness and value to his life — they make it meaningful and a life worth living.  It’s been my experience that this is every parent’s most profound wish for their child — to live a happy, healthy, independent life.  Organizations like the Arc make this possible for people like Koan.  The respite services also make it feasible for my spouse and I work outside our home and maintain full-time employment.  I understand why someone without a disabled person in their life might view community-based services as “nice to have” but not a “need to have”  service.  However, after living with a disabled person for ten years, I can emphatically attest that these supports are absolutely essential.

Mobility supports:  Koan does not walk now.  But, he might someday.  We have a Convaid wheelchair we use to move him about.  We also have a walker to practice guided walking.  He needs AFOs (custom, form-fitting plastic leg braces) to help him support his weight when he stands.   The AFOs need to be adjusted every few months and replaced annually because he’s a growing boy.  All of these were appliances were funded by Medicaid dollars.

Therapy:  As I said earlier, we want Koan to be happy, healthy, and as independent as possible.  A person with his disabilities will need a lot of intensive, guided instruction and practice to make this happen.  So, we have him enrolled in physical therapy (to support mobility), occupational therapy (to assist with feeding and other manual tasks), and speech therapy (to enhance communication).  He receives all of these services at school and privately.  Cassidy-Graham would slash funding that schools for Medicaid and the severe reduction in overall Medicaid funding would endanger access to these crucial private therapy services as well.

Deep, overall cuts to Medicaid spending, block grants to states that provide less money and inadequate grow of monies over time, and per capita lifetime spending caps will put all of the essential services I listed above in immediate and long-term jeopardy.  Plain and simple: this is a bad piece of legislation.  To quote Gandhi, “A nation’s greatness is measured by how it treats its weakest members.”   Please do not support this bill.


What Medicaid Means to Koan

I shot this brief video yesterday.  It important for our lawmakers and policymakers to see exactly what the results of their actions will be.  The Cassidy-Graham Act will remove essential services for Koan.  While I’m not surprised, I’m very disappointed that Senator Grassley is putting partisan politics (by his own admission) above the needs of disabled people like Koan.  Senator Ernst is still undecided.   I would encourage everyone to share this video on your Twitter, Facebook and other social media feeds.  If you choose to do this, please tag your senators’ accounts in that media — so their staff will see the post.  I like the hashtag #SaveMedicaid, too, for Twitter users.

To be crystal clear, when I’m calling for action, I’m not asking anyone to put aside their own political beliefs.  I think nearly all people agree with this quote from Gandhi, “A nation’s greatness is measured by how it treats its weakest members.” During the last ten years, I have never met a person who really believes that our government should not assist in the care of disabled people like Koan.  I would like your help in convincing our elected officials that opposition to Cassidy-Graham is non-partisan.  It’s not about being a Democrat, an independent, or a Republican.  This is a human rights issue.  The contents of this bill are fundamentally unAmerican.

The main tools we have to stop this dangerous legislation is our voices and our stories.  As I’ve said before, calls are really effective.  It’s also helpful to call more than once.  The offices also look at call volume.  So, even if you’ve already called this week, another call or two is helpful.  I also encourage you to share Koan’s stories that you’ve read on this blog.  Putting names and narrative to the message really adds impact.  It’s also very important to be passionate, but polite.  Remember, our goal is impact and change feelings.  Anger, while understandable, is not helpful.  Below is the contact information for the Iowa senators.  Please use any and all of these methods many times over the next week. I’ve also included some talking points, too.

Talking Points:

  • Identify yourself by name and your current city of residence.
  • Urge the Senator to oppose the Cassidy-Graham Act.
  • Tell them you are speaking for a disabled, non-verbal 10-year-old boy.
  • Cuts, block grants, and per-capita spending limits (all part of Cassidy-Graham) would strip the disabled of essential services.

Senator Grassley

(202) 224-3744

@Grassley (Facebook)

@ChuckGrassley (Twitter)


Senator Ernst

(202) 224-3254

@Senjoniernst (Facebook)

@joniernst (Twitter)


It’s Time to Act Again!

Koan is faced with another existential threat to his future well-being.  The Cassidy-Graham Act will dramatically cut Medicaid — including per capita spending caps.  As I have written before, these types of cuts will have long-lasting and disastrous implications for Koan.  The Senate is working on this right now and is looking to vote as soon as next week.

I urge everyone to call your Senator and voice your opposition to this bad legislation.  Emails are ok.  A fax or US letter from a tool like Resist Bot is also good.  But, calls are what carry the most weight.  Each call will take less than a minute.   Here are some talking points.

  • Identify yourself by name and your current city of residence.
  • Urge the Senator to oppose the Cassidy-Graham Act.
  • Tell them you are speaking for a disabled, non-verbal 10-year-old boy.
  • Cuts, block grants, and per-capita spending limits (all part of Cassidy-Graham) would strip the disabled of essential services.

If you want to go above and beyond, you can ask the staffer answering the phone what the Senator’s current position is on the bill.  You can also respectfully let them know that this is an important issue to you.  And, that you will be watching how the Senator votes.  A vote in support of this bill might impact your voting choice in the next election…

Here is the contact info for the two Iowa Senators:


Senator Grassley

(202) 224-3744

@Grassley (Facebook)

@ChuckGrassley (Twitter)


Senator Ernst

(202) 224-3254

@Senjoniernst (Facebook)

@joniernst (Twitter)