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Respite Complexity

Koan

As unbelievable as it feels, Koan turned elven last week.  His school year is off to a great start as well. This year was a little different and tricky.  The school Koan now attends — this is the first year that a Barnum child has not been enrolled at Prairie Ridge since 2004 — has a different set of hours.  Koan’s school day up until now had run from 8:45 AM to 3:45 PM. The logistics of this were pretty simple for our family. We would have a respite worker come to our home around 6:30 AM and put Koan on the bus around 8:30 AM.  This person would allow us to get up and dressed while they took care of Koan. The first hour was true respite, paid for via Medicaid dollars. The second hour, we paid for since respite cannot cover child care expenses. Since we both left around 7:30 AM, we couldn’t claim this time.  Still, it worked really well. We always knew we had someone there to get him up, dressed, feed, and on the bus each day. And, even at $11 dollars per hour, it was pretty inexpensive.

But, things changed this year.  Koan now attends Prairie Creek. The school hours are different — Creek starts at 7:45 and ends the day at 2:45.  This creates a major scheduling dilemma. Both Jeri and I have to be out the door to do our jobs before 7:00 AM now.  My new job contributes a bit here, too. When I worked a Prairie, I could leave later because we live so close to the schools. Of course, with Koan getting home around 3:00 PM, that is really early.  So, we would absolutely need help at the end of the day. If I were still working at Prairie, we would have just flipped the script, and run the respite care for two hours in the afternoon. But, with our new situation, we really discovered we would need help both in the morning and afternoon.

There were lots of problems with this scenario.  The first was that we did not have enough respite hours funded via Medicaid to pay for three hours of care a day for ten months.  Back in August, we met with the amazingly helpful Gary Olsen and our new social worker from Johnson County (Linn County has dropped social work for people covered by Medicaid), Brenda.  This was an amazing meeting! Jeri and I shared the scope of the problem, and Gary and Brenda huddled until they had a solution for us. It was astonishing. The plan was to have a morning worker come in and do some physical/occupational work with Koan — which would include getting him dressed, feed, and on the bus — and by documenting it in this manner, we had access to additional dollars.  I really did mist up at the end of this meeting with gratitude for the creative, family-centered focus this team. It was so cool!

So, we had the plan.  We then needed to find people to work with Koan.  We tried something a little different this time around.  At the time we developed this plan, Koan was still attending the Arc’s summer day program.  I won’t go into how awesome that is here — but it is the really, really great. But, it is important to understand for this story that at this program about 25-30 different adults get to work with Koan.  Jeri and I met with Koan’s lead teacher for this experience and let her know we were looking for help in the fall for mornings (for an hour) and in the afternoon for two. By the end of the week, we had two young men who had expressed an interest in working with Koan.  We hired a young man named Connor who ended up getting a job at Prairie as a paraprofessional in a building that mirrors the hours Koan goes to school. It was a perfect fit.

The morning was a different story.  We could not find anyone willing to come for just one hour (6:30 AM-7:30) to work.  We looked. Gary looked. But, we struck out completely. So, for the first three weeks of school, Jeri and I would take turns waking Koan up, dressing him, and feeding him.  We would then rouse Tiber at about 6:45 AM — who would then watch Koan until his bus arrived at about 7:20 (putting Koan on the bus, of course). Tiber’s classes don’t start until 8:45.  This was kind of lousy arrangement — no one liked it. Koan had to get up earlier than he would like — as did Tiber. Jeri and I were perpetually feeling harried before we left the house from dealing with two unhappy boys.

In early September, Gary gave us a call saying that he had someone interested in our morning work!  He gave us Brenna’s number on a Wednesday evening, and she was working for us on Thursday morning. It was awesome!  This is just another great example of the incredible work done by the people at the Arc along with our friends in Johnson County — who again elected to hang on to their Medicaid caseload despite the mess that is Medicaid privatization in Iowa.

Oh, and Koan is having a blast at Prairie Creek, too.  Earlier this month, I dropped him off there after a check-up.  We were literally mobbed by teachers, paras, and students within seconds of walking through the front door — hugs and high-fives all over the place.  It’s hard not to feel great about that! I’m a little worried that one of his new teachers might get a little too attached. She sends wonderful pictures and texts about him on many days.  But, I’m kind of worried that one of these days, Connor is going to go to the bus after school — and there’ll be just a note — something like, “ We’ll send Koan to you for the weekend to visit… MST.”  Of course, I’m kidding. It is seriously great the way that Koan is being loved in his new school. It’s what all parents would want.

What To Do… What To Do…

Koan at the barbershop.

Late last spring I did something I had not done in over 19 years: I interviewed for a new job.  While I was really happy working for Prairie, Cedar Rapids Community Schools had created a new position that was just too interesting to me.   I was fortunate enough to be selected for this new role — Executive Director of Digital Literacy and Information Technology — in early May.   This has been a really seismic change for my entire family: a new schedule, different core work, and a change in health insurance.

As I’ve written before, Koan is covered by Iowa Medicaid through the HIPP program — the last vestments of the old (and vastly superior in every sense) fee for service model.  The way HIPP works is that we cover Koan under our private insurance and anything our policy does not cover, Medicaid picks up.  In addition, DHS would send us a check twice a month that re-reimbursed me for Koan’s portion of our coverage plan.  Again, HIPP is so much better than the privatized Managed Care Organizations (MCOs) that place profit over patient needs and are costing tax payers more than the previous, and highly effective, public fee for service model.  With HIPP, we’ve gotten everything we’ve ever needed to care for Koan in a timely fashion.

In order to qualify for HIPP, DHS runs a cost/benefit analysis annually in late June.  As long as our Wellmark Blue Cross Blue Shield policy covers an adequate amount of spending, Koan’s enrollment in HIPP is considered cost-effective.  However, with my new insurance coverage with the new job, I was concerned that we might lose access to HIPP coverage.  And, as I’ll explain in a bit, I did my self no favors to make this process quick and painless.

My new job and health care coverage started on 7/1/2018.  On Friday, 7/6, I was scheduled to have my very first colonoscopy.  Trust me this will all relate back to Koan shortly…  On Tuesday of that week, my second day at CRCSD, I got a call from the gastroenterology team doing my procedure that let me know had no health care insurance.   This was a bit of a shock to say the least.  So, I postponed that procedure for a couple of weeks and started tracking down what had happened.  Of course, to make matters more complex, at the time of this call I was at an off-site executive team retreat.  So, I couldn’t just run to down to HR/payroll and see what had happened.  I did call back to the office during a break and discovered — not all that surprisingly — that the lapse in coverage was my fault.

I had accepted the new position and been on boarded by the HR team in mid-May.  For the last nineteen years at Prairie, all I had to do to select health insurance was circle the coverage plan I wanted on a sheet of yellow paper and return it to benefits.  In my head, I had done that during this mid-May meeting.  I had certainly signed a lot of papers, and I was sure I had done given the benefits team that info.  This was further reinforced by the fact that I had gotten new insurance cards from Wellmark in mid-June.  What I found out during that phone call during the break from the retreat was that CRCSD does things differently.  I needed to go to a Wellmark website and select the plan I wanted and enroll myself.  So, I did technically have coverage, but I had not enrolled in a plan.  The new insurance cards were just an annual refresh of my cards for my Prairie plan.  This was a classic face-palm moment.

The retreat that day was that the Prairie Woods Spiritual Center on Boyson Road.  I had been outside because the cell coverage was so bad in the building.  Once I got this information, I ran back inside to jump on my laptop — while the cell coverage was bad, the wifi was good — to get myself enrolled.  I successfully logged into the Wellmark site and selected PPO Choice — the same plan I had back at Prairie.  Of course, I was a little worried about our HIPP application at this point.  As part to of the application, I would need to send a photocopy of my new insurance cards and a current pay stub.  The application due date was July 13th.  So, I figured I had plenty of time to get these items addressed.  On Thursday, July 5th, I walked down to benefits and had the team member assigned to me fill out the DHS paperwork.  I thought we were all set…

One of the many cool things about working in the CRCSD central office is the building runs a four day work week from early June to the end of July.   Everyone works ten hour days Monday through Thursday.  No one is in the office on Fridays.  At the end of my second week on Thursday, July 12th, I got home around 6:30 PM.  I had worked out at the gym after work and was feeling really great.  It had been a good day at work.  When I got home, Jeri greeted me and in our casual conversation, she mentioned that we got our new insurance card.  She did note that they only send us one card.  We both laughed about that for a minute — joking that Wellmark must be really trying to save money on printing.  Then, Jeri casually remarked,”Are you sure you chose the family plan and not the single plan, right?”  After thinking for a bit and to have some piece of mind before the weekend, I decided to re-check what I had signed up for on the Wellmark enrollment site.

I had indeed enrolled in the wrong plan in my haste to get signed up on 7/3.  I will admit, I lost it at this point.  The HIPP form was due the next day, and the information I had for the application was all wrong.  Worse yet, no one would be in the office on Friday to help.  Jeri was incredible at this point — so calm and collected.  Yet, another concrete proof on why she is my soulmate.  I was in full existential meltdown.  I thought I had not only messed up our family health care, but I thought I had totally screwed up any chance Koan would have to remain in HIPP.  Jeri led us through a very deliberate and reasoned plan to do what we could to remedy the situation on our own that night.  I wrote several rather panicky emails to our HR and benefits team leads as well as left voicemails.  Jeri updated our info on the Wellmark site — selecting the correct family plan.

The next day, the incredibly gracious benefits person called me (on her day off)_ and assured me that she would work with me to get this all sorted out.  She would work with payroll to adjust the amount of insurance from my check — July 13th was my first paycheck.  And, even better, she would write a letter to the DHS team explaining what had happened and describing all the information the State would need for the HIPP application.  This phone call was so awesome and kind.  After talking with benefits, I called DHS and got an extension for our application. Again, I felt like we had everything back on track.

The following Monday I got the letter and all of the other supporting documentation for our HIPP application and emailed it to the DHS team.  On Wednesday, I got a note indicated that DHS needed access to Koan’s claim info from Blue Cross Blue Shield to make a cost-effectiveness eligibility determination.  After going back and forth with the DHS folks a couple of times on Thursday, I was able to get them the right information.  In years past, I had been worried about the cost-effectiveness of our application.  Thankfully, Koan is a pretty healthy guy and we don’t usually need a ton on additional medical help.  This year, we had returned for three appointments to the U of I neurology team and went through two rounds of genetic testing.  I had seen the cost of these test in our EoBs (Explanation of Benefits) from Wellmark.  The Angelman test was about $3,500 and the epileptic panel that had revealed his KCNQ2 diagnosis was a whopping $12,300.  Both tests had been pre-approved by insurance before testing.  So, I had little doubt we would get be deemed as cost effective by HIPP.

The following Monday, July 23rd, the DHS HIPP worker called my cell.  She had reviewed Koan’s records from Wellmark BC/BS and he was coming back as cost ineffective.  She was calling to let me know we would be removed from HIPP and placed (eventually) with an MCO.  I was in shock.  She was really helpful and nice.  But, after looking at the numbers with her, I had to agree.  Koan would not be eligible for HIPP.  Wellmark had spend a total of just under $900 on him for the fiscal year.  Here’s the crazy part.  When I looked at both of the genetic tests, Wellmark had paid a few hundred dollars for the $3,500 Angelman test.  But, they had paid nothing on the $12,000 epilepsy screener.  And here’s the really wild part — Medicaid had paid for none of that test and I didn’t owe anything either.

When I looked at the EoB from Wellmark for that item two things stood out.  The claim had been denied.  The reason for the denial was the procedure was deemed “experimental” or “investigatory”.  Secondly, again, remember according to the EoB, I owed nothing…  All of the cost on these test was covered by “In Network Savings”.  I wasn’t sure what that meant.  So, I called Wellmark to see what it means when cost is absorbed by “In Network Savings”.  What they told me was that terminology in this case means that either the lab that conducted the tests or the University of Iowa Hospitals and Clinics had written off or absorbed all of the cost.  Remember, before both tests were run, we had to wait for approval from insurance.  So, this seems really strange…

I next called Koan’s U of I care team.  I wanted to verify that the epilepsy test was neither “experimental” or “investigatory”.  The genetic counselor agreed as did our neurologist.  So, to be safe I asked them to write a letter I could use to appeal this denial.  I then called DHS and asked if we could get Wellmark to cover some of the cost of the $12K bill if that would swing the cost effectiveness of the HIPP equation.  I was told that it likely would.

As things stand now, I’m still waiting for the letter from UIHC.  But, I’ve been thinking about things a bit more.  I’ve had the unpleasant thought that I might just be able to leverage some payment from Wellmark on this denied claim.  But, I wonder how much of the $12,000+ they will actually pay — $10,000? $7,000? $3,000? $200?  If we actually do get a partial payment, what will happen to the rest of the written off portion?  My concern is that we might get stuck with a $10,000+ bill.  No one can really give me an answer to this question.  So, once we get the letter, I guess well decide what to do.  Should we let Koan roll into the claws of the MCOs or do we risk a huge medical bill that might (at least in the short term) dwarf any cost the MCOs will pass on to us…?  It will be an interesting choice.  It’s never dull having Koan around.

 

Screen Time!

Koan watching TV

I’ve recently started a new job, and that’s taken up a lot of my attention for the past few weeks. So, I haven’t have time to post here.  Koan is having a great summer in the meantime. He goes to the Arc’s summer day program hosted at Kennedy HS.  This program runs from 9:00 AM to 3:00 PM five days a week all summer long. They do all types of really fun things, swimming (huge favorite), trips to the inclusive playground, all sorts of crafts, and any manner of games.  So, again, Koan is having a wonderfully entertaining and happy summer.

This has also been the summer when he’s (finally) fallen in love with television — more specifically Netflix.  Jeri and I have slightly mixed feelings on this topic. Honestly, it’s about 90%/10% favorable vs. guilty. Koan’s almost eleven years old, and in addition to all of his other challenges, we’ve not been able (up until now) been able to use the screen as childcare.  I realize that sounds a little bad, but it’s also a practical reality as all parent know. There are times when it’s really almost necessary to have this tool available. And, until this summer, that’s not been an option for us. Honestly, this is a pretty significant celebration.

Last weekend, the weekend after the 4th of July, Jeri, Tiber, Koan, and I decided to pack up and travel to visit our friends Ken and Christine in Sioux Falls, SD.  This trips takes about a five and a half hours. .We elected to leave reasonably early in the morning (around 7:30) so we could enjoy most of the rest of the day with our friends.    We’ve discovered over the last couple of years that Koan is the best road trip passenger in our family. He loves to ride in the car — even for five hours. It’s one of his favorite activities.  His added bonus is that because he wears briefs under his pants/shorts, he almost never needs to stop for a bathroom break. We still change him of course, but it’s on our schedule and not on-demand, most of the time.  

He’s so funny.  On this particular trip, we had all decided to stop at Clear Lake to get something drink and for a bathroom break.  This was about two hours into the trip. I was already weary of driving. Jeri and I went into the Kum and Go to get our stuff and make our stops.  Tiber and Koan stayed in the van. When I returned to the vehicle, I could see Koan looking right at me — laughing and signing for “more”. He was the only one in the van that was amped up for another three hours of windshield time.

We arrived at Ken’s and Christine’s house around 2:00 PM.  They are such gracious hosts! There were all types of meats on the smoker and all types of adult drinks chilled and ready for us.  I had not eaten since 7:00 AM and didn’t want to spoil my appetite for the good stuff in the smoker. And, I really couldn’t refuse the wonderful craft beer and whiskey Ken was offering.  Jeri had fallen under the spell of Christine’s homemade margaritas at the same time. Things got blurry for both of us really quickly. Before things got too far out of hand, we got Netflix going on the Derr’s entertainment system.

Koan’s current favorite is a nursery rhyme show from Great Britain called, “Little Baby Bum”.  There are three episodes that run for about an hour each — one animated song after the other. I wish the show were a bit more age appropriate.  But, at this point, we are just so happy that something on the screen captures and sustains his attention. The show has a couple of motif songs. One of them is, of course, “Wheels on the Bus.”  He’s hooked!

On this particular night, we put Koan on the recliner in the Derr’s family room that was facing the screen and got the show going.  He was enthralled. As the afternoon wore away, We realized that had not needed to provide Koan with any attention for several hours.  He watched all three episodes without complaint. This was new and, frankly, very welcome. With our older two kids, this sort of thing happened around 18-24 months.  It just took Koan a little longer — about ten years… This new development feels like all of us who care for him now have some room to catch our breathe.

Over the past couple of weeks, his interest has branched into a couple of other similar shows also on Netflix.  With my new job, I’ve been working a little later. So, I miss his after camp routine. But, I understand that Koan now expects to watch his shows between the time when camp is over until supper.  I’ve heard he will let Jeri know if he doesn’t see the Netflix logo and opening chime sound within a few minutes of getting home. In fact, Jeri is napping as I write this post. I’m in my office and Koan is in front of the TV enjoying his shows.  This is a game-changer! I have a feeling that just about all other things this will be a mixed blessing. It’s just a matter of time now until he demands the remote in order to watch his shows. I look forward to that day.

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.

Presume Potential

Koan at the inclusive playgroundLast week I had the privilege to attend and present at Building Bridges, an assistive technology conference at Grant Wood AEA.  For the past couple of years, I’ve really focused a lot of my professional energy on accessible educational materials (AEM) and Universal Design for Learning (UDL).  The big idea behind both of these frameworks is that when schools provide baseline assistive technology tools to all kids — everyone benefits.  For example, at Prairie, we provide all students with a tool called Read&Write for Chrome.  This powerful tool gives kids access to a great screen reader (it will read digital text to kids) and a powerful speech to text engine (kids speak and it will type for them).   Without getting into deep educational theory, the core concept is that these tools allow all kids to choose the style that works best for them (regardless if they have a disability or not) and for the kids who must have these types of tools to access learning — it removes the stigma of being different because everyone uses them.  We are doing some exciting, bleeding-edge work along these lines at Prairie.  I was there with the rest of our AEM leadership team to share our story and practice with other area schools and educators.

Two years ago, I had the opportunity to attend a special ed conference put on by the Iowa Department of Education.  I attended this conference as a member of SEAP — the Iowa Special Education Advisory Panel.  My role on SEAP is to represent parents.   At this conference, I attended a breakout session by an IDoE staffer named Maggie Pickett.  Maggie was talking about universal design and assistive technology.  After this session was over, I had the realization that I had been perpetuating a malpractice in regards to assistive tech.  I, like many others in my role, viewed assistive tech as a student-based, consultive model.  I would only get involved with AT when called upon by a consultant from the AEA or some other organization that provides services.  Maggie helped me see that AT is good for all learners.  In fact, we’ve gone on to publish a monthly podcast, Friendly Disruption, to provide learning about AT to other educators.

The main reason for relating these professional details is to make it clear, that while the conference was about assistive technology, my focus was professional and not personal.  While Koan would certainly benefit some from his teachers considering UDL when creating learning, for the most part, his disabilities are so profound that he still requires much more intensive and individualized tools.  That being said, Koan is still the genesis for all of my work along these lines.

The keynote speaker at Building Bridges was Kate Ahern and the theme of her talk was presuming potential.  Kate is an expert in Augmented and Alternative Communication (AAC).  These types of tools are used for people with really profound disabilities.  People like Koan.  So, I quickly shifted from professional to dad as I listened.  Her core message was so powerful — presume potential!  If you assume the person fully understands you (even if they can’t show it), you make the safest assumption.  If the individual does not understand, you are still modeling the desired behavior.  But, if they can understand, you open the world to them.Presume Potential Slide

This is one of my most profound hopes for Koan as he moves through life.  I hope that all of the significant people he encounters presume his potential.  This idea, at least in my mind, presupposes so many things that are highly important to me — respect, dignity, compassion, and even accountability.  It’s an oversimplification to say I want him treated like everyone else because frankly, I don’t.  He has real and significant disabilities that do make his needs different.  But, I do want all meaningful people in his life to presume his potential for everything.  Assume he can do it until he demonstrates otherwise.  Model the behavior or action we want to see from him.  And, most importantly, persist in doing this even when it seems like it’s not working.

Jeri and have been really blessed that Koan has had a number of people in his life so far that have done this for us. In fact, Koan’s teachers, paraprofessionals, and therapists at school have been far better at this than we have as a family. I find that as a parent/caregiver that sees him every day, it’s all too easy to do things for him just to get things done.  It is hard to find the right balance between his needs and everyone else’s needs.  The simple truth is that I need to get better a presuming his potential.

Koan Can Not (be) Quiet, Too (2)…

Koan at the Arc MarchLast Tuesday evening (the day we got Koan’s diagnosis), I got home — super excited to actually talk to Jeri.  We had mailed and texted but not actually conversed about Koan’s new diagnosis.  I came in through the garage into our kitchen.  Jeri was near the sink getting supper ready and Koan was in our connected great room scooting about as usual.  The tv was on and tuned to some random Food Network show that Jeri will often turn on for white noise.  Koan does not like “kitchen sounds” metallic clangs, etc…  The tv helps cover that sort of thing up.  We started a having a really fast, high-level conversation and mini-celebration on the spot.  But, as normal, Koan did not wish to be left out.  So, again, as he so often does, he began to talk to us at the same time.  Soon, amongst Jeri and my conversation, the tv, and Koan singing, it was really hard to make sense of anything.  There was a cacophony of sound that made it super hard to make sense of anything being said.

Koan is not the only person in our family that has had an IEP (Individualized Educational Plan — the documentation schools use for special ed services).  I’m a diagnosed dyslexic and received special ed services throughout most of my K-12 experience.  It’s really not much of a hindrance anymore except in a couple of ways.  The main manifestation that still causes me to struggle is that I have a lot of trouble sequencing letters or numbers — spelling has always been a challenge for me — particularly if I need to do it out loud.  Throw in the sensory clutter from the tv and Koan and for the life of me, I could not get the correct sequence for Koan’s diagnosis when talking to Jeri.  When I complained about this, Jeri said, “Oh, that’s easy — Koan Can Not be Quiet, too.”  It took me a second to realize she was not commiserating with me, but rather that she had already come up with a totally apropos mnemonic.  It’s not perfect, but it makes it super easy for even my dyslexia-addled brain to process every time — Koan Can Not be Quiet, Too — KCNQ2.

Aside from the ongoing excitement, there’s really not a lot new to report.  We have two appointments scheduled, both on May 9th,  at the University of Iowa Children’s Hospital — one with neurology and one with genetic counseling.  We are hoping to learn more about KCNQ2.  I also suspect that we’ll also transition Koan to a new family of anticonvulsant, too.  There also continue to be small, but powerful delights related to this news as well.  For example, I just found out there’s a national caregiver/family and treatment professional summit for KCNQ2 on September in Anaheim, California.  That’s a really terrible time of year for us — the start of school.  But, it’s still really, really cool to think there’s a national group that is working on our specific cause.  Awesome!

I’ve also realized how thankful I am for this particular diagnosis.  There’s so much good news it holds — the de novo mutation (no one in my family needs to worry about this), there are no latent, hidden symptoms or problems waiting down the road, etc…  In addition, and I didn’t realize it until I found out the label — this particular diagnosis means that Koan is Koan.  I would have been just fine with an Angelman diagnosis.  But, with KCNQ2, we know that all of Koan’s smiles and his (mostly) cheery disposition are all him — not a genetic predisposition.   That’s a pretty cool revelation all by itself and makes the diagnosis an even more powerful gift.

Breaking News– The Diagnosis Is Here!!!

Koan with the Easter BunnyI’ll write more later, as I’m too excited to be truly reflective.  However, I just got word that our latest round of genetic test has yielded a definitive result.  Koan has a mutation on the KCNQ2 gene.  There is a spectrum of symptoms that come with this mutation, unfortunately, Koan is on the more severe side of the scale.  We believe Koan has Early Infantile Epileptic Encephalopathy (EIEE7).  If you want to learn more (like I do!) Check out — KCNQ2.org   Here are some salient points in the short term.

  • This disorder is not the familial variant — so it did not come from Jeri or me and better yet — Sydney and Tiber have no greater chance than anyone else of seeing this in their children.  They are guessing it was a de novo mutation — so completely random.
  • As side from his current symptoms, there are no new symptoms or other emergent problems we need to worry about in the future.  His life expectancy is as normal for anyone with a seizure disorder.
  • It sounds like there are a couple of families of anticonvulsant drugs that work better than others for people with KCNQ2.  So, we’ll be following up with his neurologist to be sure he’s on an optimal medication.
  • This is an international KCNQ2 community — including two other families in Iowa  (Victor and Bedford).

Again, I’m sure there will be more information and thoughts.  My head is spinning with all of the possibilities and revelations.

 

What’s That Sound…?

 

Koan Under the BedSo, this picture bears some explanation.  I still smile each time I see it.  I took it a couple of weeks ago on a Saturday.  Koan does not enjoy weekends all that much.  School days are much more interesting for him.  As with most kids, boredom often equals mischief.  On this particular day, I heard a strange set of sounds coming from our master bedroom.  Koan was talking.  He wasn’t in distress, but his voice sounded really strange.  It was unlike any sound I’ve ever heard him make.  So, I got up and investigated.  I just about fell over laughing when I saw his situation.  He managed to enter our master bedroom (a room he’s not allowed to access by himself) and trapped himself under our bed.  Yes, I did take time to take the picture before freeing him.  He got himself into that mess, so he rightfully, just like any other person, deserves a little mocking before being released.  Koan doesn’t or can’t (I’m not sure which it is frankly) move on his belly — he never “army crawls”.  So, how he got his head and shoulders that far under the bed while on his stomach is anyone’s guess.  But, he was truly and fully stuck — going nowhere.  This was a little like Koan’s “Leave It to Beaver” moment — the one where the Beav get’s his head stuck in the stairway banister.  Of course, this predicament was a little easier for us to solve.

What’s not as obvious, but nevertheless also undoubtedly true about this photo, is that it show just how much Koan has trained or modified the behavior of everyone in the family.  Over the past year or so Koan has developed a new habit.  He will cry and get upset everytime he hears a door close in the house.  I think there are at least couple of reasons for this that are pretty rational — even cleaver.  First and foremost, Koan associates the sound of a door closing with someone leaving the house — without him.  In his mind, this is a completely unacceptable outcome.  He so enjoys travel, that regardless of where someone is going, he wants to go every time.

However, in the last few months, he’s generalized his dislike of the “door closing” sound to all doors in the house — the basement door, any of the bedroom doors, the bathroom door, etc…  This is, as you might imagine, pretty annoying.  My guess is the main reason for this is that he also realizes that when a door closes — not only might someone be leaving without him, but almost as importantly (to him) someone has possibly, unilaterally restricted his access to movement throughout the house.  It doesn’t matter to him that this is by design — we don’t want him tumbling down the basement stairs or getting into the bathrooms.  But, here’s the interesting part,  his displeasure at this sound has subtly modified everyone else’s behavior.

Because, he hates that particular sound so much and we all know it, we’ve all developed our own set of coping skills.  Sometimes, I’ll try to shut a door so intentionally as to avoid making the sound at all.  Others will sometimes not latch a door (giving the door the appearance of being closed without being latched) — it’s the latching sound that he objects to.  And, other times, I think I’ve latched the door softly, but in fact, the door is not really latched at all.  All of these behaviors play right into Koan’s master plan.  One of his favorite pastimes is to scoot up to doors and push them to see if they are latched.  More times than you’d think, he succeeds in getting into a space that we don’t want him to access.  So, he’s trained us to let him misbehave — the twerp!

Part of my glee in taking the picture above is that he got a little dose of karma.  He got into a space he was not supposed to be in — he knew that, too.  And, he got stuck.  I find this is one of the great rewards of parenting, any child, when mischief reaps it’s own just reward.

Red Pill, Blue Pill, or a Crocodile?

Koan in the CrocodileLike the rest of the world, I was so sad to hear that Stephen Hawking passed away last week.  Even though I don’t do anything with sciences like physics or astrophysics, I always appreciated Hawking.  He so fully embraced his geekiness, it was hard not to like him.  I wasn’t really surprised to see a lot of outpouring of grief on my Twitter and Facebook accounts.  I did see a number of different posts and graphics showing Hawking leaving his wheelchair.  I think my favorite showed his chair in stark focus and a silhouette of Hawking arms and legs splayed out as if he was floating up to the moon.  But, as someone else pointed out, it also kind of looked like his wheelchair had come to an abrupt stop and he was tumbling out of it.  This made me smile as I suspect Dr. Hawking would have found this funny as well.  Something else came across my Facebook feed related to this topic as well that caught my attention.  It was an op-ed from Teen Vogue — not a publication that hits my timeline a lot.

This has been a topic I’ve been thinking about for a while, even more so with all of the testing we’ve been doing on Koan.  We did get permission to do the additional DNA tests for the various disorders related to epilepsy.  We did the blood draw for that a week before spring break.  I would guess we’ll hear something around the end of April.  I serve on the University of Iowa’s Center for Disability and Development’s community board.  Last December, I was relating to that group that I was excited that we were on a path to possibly finally having a definitive diagnosis.  The parents in the group all smiled, but one of the physicians respectfully asked why I was so interested in the label.  I told him that having a rough roadmap was very helpful — what should we expect next…?   Having a support group (I assume) would also make things easier.  While I don’t admit this very often, I still hold out a little bit of hope for treatment, too.

One of the thought-experiments I sometimes conduct goes something like this — if I could get access to a pill that would “cure” Koan — give him the ability to walk, to talk and to progress down a more typical developmental path, would I give it to him? I know for some, this must seem like a complete “no-brainer”.  But, I struggle with this.  It’s this dilemma that’s at the crux of the op-ed.  Does this type of change free Koan to become himself or does it effectively destroy his identity? If I able to take away the disabilities, do I remove his “Koaness” as well? I’ve written about this obliquely before.  Some of the things I now love most about Koan are inextricably linked to his disability.  This forces me to think of all sorts of uncomfortable questions: do I love is his dependence on me (that makes me feel really selfish)? Where does Koan begin and end? So, it’s kind of a “red pill/blue pill” question (from the Matrix) for me. Jeri and my guiding principles for Koan (and all of our kids) is the continued growth toward happiness, independence, and good health.  I still believe these are solid guideposts, but it’s not black or white/cut and dried. I want Koan to push past as many of his disabilities as possible without invalidating how they inevitably define him.  It’s an interesting line to walk.

On a somewhat unrelated note, we had Koan’s annual IEP meeting in early March.  As always, I’m blown away by the great team he has working with him at Prairie Ridge.  This has been an interesting year.  For the last couple of years, Koan has done really well with his mobility goals and he’s struggled with consistency with his communication.  That was reversed this year. He took a step back in mobility but made nice gains in communication.  We think his hips got out of whack this year due to some tightness in his lower leg muscles — causing one his legs to shorten.  Our awesome PT from GWAEA worked with our orthotic specialist to get a shoe insert to address this issue.  A few days after that happened, Koan actually scooted to his Crocodile walker (which he’s not used most of the year) and grabbed at it — to show that he wanted to use it.  Here’s a brief clip from that first walk.  So, he’s not totally off track.

 

While I’m very excited for him to move on to Prairie Creek, here’s a little fun fact.  Sydney, oldest Barnum/Mead child, was in the first kindergarten class to go through Prairie Ridge when it opened in 2005.  Next year, 2018-19, will be the first school year when there will not be a Barnum/Mead child at Prairie Ridge.