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 Car Alarm

While there are so many wonderful aspects to living with Koan, I think the most difficult is navigating his inability to communicate.  I might change my mind on that in a couple of years as he continues to grow and get heavier.  But, having a nonverbal child for ten years is a real challenge. To be clear, Koan understands a bunch of verbal communication.  There are keywords and phrases we are very careful to use so we don’t confuse or upset him.  For example, if we are preparing to go somewhere (anywhere) and someone says, “I need to get my shoes.”  This will send Koan into paroxysms of joy — he is deducing that someone is going somewhere and he might be going out.  However, if he’s not going with us, we all have to work to choose our words very carefully to avoid dashing his expectations.  There’s a whole subset of words we don’t say at home unless we know for sure that Koan will be involved — bath, go, hungry, grandma, store, etc… I understand that at school they have similar issues with words like: recess, lunch, bus, and PE.  So, Koan understands a lot of language and he’s able to differentiate between contexts.  We can say bus or recess at home, and he won’t care.

What vexes me is not Koan’s understood language, but rather his expressive language.  It’s pretty clear to me that he has a lot of ideas and thoughts, but he has very few tools or ways to get them across.  He only has one sign he uses at home, “more.” We have an Oliver Twist moment every time we get him out of his feeding chair (regardless of how much he’s eaten).  And, it’s really heartwarming when we put him in bed each night with a hug and kiss and he signs for “more.”  But, I really wish he had more than that one word…

We don’t have access to (or frankly, the discipline to use with fidelity) his “yes/no” switches from school.  So, this particular deficit produces a ton of frustration for everyone.  Koan is very pleasant about 80%+ percent of the time.  He’s a joy to be around.  The other 20% of the time, he’s not as much fun.  I would guess that about 5% of his bad times are just bad moods.  We all have occasions where we are in a bad or unpleasant mood for no apparent reason.  The other 15% of unhappiness comes from not being able to tell us what he wants or what’s bothering him.  

We do a lot of structured guessing — “Do you need a new diaper?”  “Are you hungry?”, etc…  Again, many times, what’s bothering him cannot easily or clearly be answered with a “yes/no” question.   Occasionally, he’s just bored.  It would be great if he could tell us what would be fun, but we have to just try things — playing an episode of Sesame Street, singing to him, or presenting toys.  But, more often than not, we don’t guess right.  And, he becomes inconsolable.  When that happens, we usually give him some alone time in his room to calm down.  Then we start over, trying to guess what he wants.

While Koan is not verbal, he still does use his voice. Like most parents, we are pretty good at recognizing his themes or tones in his vocalizations.  We can tell quickly when he’s angry, sad, hurt, or thrilled.  One of the things we’ve learned over time is the stages of his frustration vocalization.  He will start off with his normal, sing-song vocalization.  But, when starts to get progressively more frustrated, he begins to produce a sound we call “the car alarm.”  It starts with a lower sound that extends out to a long, high-pitched yip.  It then repeats; just like the eponymous alert.

When “the car alarm” starts, the timer has started toward a full meltdown.  Everyone is on the clock to figure out what needs to happen to make things right.  We start with a simple, unwritten decision-tree type protocol.  Is it near a mealtime?  Does he need a new diaper? Does he want a new toy? Does he want to hear a song?  Should I pick him up and snuggle with him?  If you are thinking he’s training us, you would be absolutely right.  

Jeri has a much higher tolerance for Koan’s frustration.  She rightly points out that he has me wrapped around his pinky.  But, I think that the fact that Koan can (and does) manipulate his caregivers to get what he wants is a good thing.  It’s a successful coping mechanism.  I certainly hope he gets better at expressive language.  However, he’s successfully finding ways to get complex problems solved with tools he currently has.  I”m grateful for that.  That being said, it’s no fun hearing “the car alarm” go off at 5:30 AM on a Saturday morning.

Everyday Joy

The Tuesday keynote speaker at ITEC this year was Dean Shareski.  The title of his talk was, “The Relentless Pursuit of Joy.”  It was a good presentation.  Essentially, at the core, the big idea was emphasizing the importance of student engagement through a strengths-based approach: a great message.  The way to get there or the “how” was the pursuit of joy.  Shareski shared this early lip-dub produced in 2009 from Wartburg here in Iowa that apparently ignited this line of thought.  His ending call was that all educators need to make it a priority to design for or set the conditions that make joy possible for everyone in their classroom (including the teacher).  Again, great stuff!

As I filtered this through my own experience, I realized this presentation had helped me to articulate some new insights about Koan.  As I’ve said before, I wouldn’t wish a child with Koan’s condition on anyone else, but I would not change him.  I’ve tried to explain why this is the case many times before, but I understand why even more deeply now.  Shareski shared many, many brief examples of people experiencing joy.  It didn’t take me long to realize that I see that emotion all the time.  Koan is the most joyful person I’ve ever met. I no longer need to actively seek out joy (although I do), it’s with me every day.  

The brief, “bath time” clip is actually a very reserved expression for Koan. But, you get the idea — even the most mundane task is a reason to get excited.   He gives a joyful reaction when I come into his room each morning.  When I prepare his breakfast (or any meal), he exudes joy.  Koan loves, loves, loves, to go to school. So, the staff that gives him a ride to and from school each day get to share in his joy. Unsurprisingly, the transportation team loves him.   When I get home from work, without exception, I get a gleeful greeting.  He enjoys the bedtime experience, so we get a happy-dance then, too.  Going to Target or Hy Vee is also reason to celebrate in Koan’s world — any trip in the car.  His joy is contagious.  We overflow with joy in our house.  It’s an embarrassment of riches.

Of course, it’s not sunshine and flowers all the time.  We carry burdensome worry about his future.  Koan occasionally gets frustrated and he can’t tell us why.  That’s hard.  There’s also the difficult day to day tasks, lifting him, changing his briefs (not something I expected to being doing at this point in my life), bathing him, feeding him, etc…   Again, I would not wish the uncertainty, the drudgery, and the worry upon anyone.  But, joy is a priceless currency and our family comes out so far ahead in the emotional transaction.

The Wheels on the Bus

Koan’s favorite song is The Wheels on the Bus.  He’s loved this song since before he was one and he still adores it at ten years old.  While he likes music in general, this song is special for some reason.  And, like so many other things with Koan, I have no idea why this is the case.  Koan is a pretty good natured guy.  He’s always happy unless he’s not…  Of course, because he’s non-verbal, it’s really difficult for him to let us know what’s displeasing to him.  So, occasionally, he gets frustrated and upset.  And, loud, abrupt sounds can set him off, too.  The vast majority of the time when these things happen, a quick chorus of The Wheels on the Bus will calm him down — no matter the cause of the unhappiness.

Over the years, we’ve collected/captured a lot of different versions of The Wheels on the Bus.  A recent favorite version is a Cooper Tires ad that uses a version of the song.  Koan’s not a huge TV guy, but that gets his attention every time.  There’s a really high probability that if you walk into our house and say, “Alexis repeat!” You’ll hear Bert and Ernie’s Sesame Street version of The Wheels on the Bus come blasting from our Amazon Echo.  The Echo has really been a game changer.  It’s made it possible for us to hands-free play the song both preemptively and in reaction to situations where Koan might be upset.  For example, doing the dishes — the clank sounds of plates can get him upset —  or watching the Hawkeyes play.  Inevitably, Jeri or I will make some sort of abrupt exclamation (either of glee or dismay) that will startle and set him off.  This song is playing a lot in our house.

A couple of years ago, we found and bought him a toy — a school bus that when it rolls plays a version of Wheels on the Bus.  To our surprise, he was kind of lukewarm to this particular toy.  He’d play with it, but he didn’t love it or seek it out.  So, it went into the toy box.   Koan can’t really get into the box to get new stuff out.  So, when a toy goes into that container, we often forget about it. A couple of weeks ago, Jeri and I reorganized his room.  When we did that, we freed up some shelf space and we decided to put some toys on these shelves.  In this case, the shelves were low to the ground — within Koan’s reach.  We had been keeping containers of socks and pajamas there.  And, we were getting sick of gathering up socks and pajamas from all over his room each morning.  He would often get out of bed at night and dump these containers.  So, we decided to put some toys there instead.  We looked in the toy box and put the school bus on one of these shelves.  A new favorite toy was born…

Over the course of the next few days, we began to hear the toy’s version of Wheels on the Bus right after putting him to bed at night and early in the morning.  Koan has always liked bedtime and we’ve never had issues putting him in bed for the night.  But, he doesn’t stay in bed very long.  The last couple of weeks, we hear him playing with that toy within seconds of closing his door for the night.  In some regards, this is pretty cool.  We love the fact that he’s now more interested and playing with toys.  In fact, I’ve been playing a game with him the last few days.  I’ve been putting the bus in different locations in his room (all within his reach) each night.  He finds it every night.  

About a week ago, I put the toy on a shelf in a different area of the room — new location. In under 15 minutes, I heard the toy playing.  So, I opened his door to put him back in bed (a futile effort).  When I opened the door, I saw something I had not seen before with him.  He was sitting by the door with the bus under his left hand.  He was rolling it back and forth (this makes it play the song).  This type of intentional play is a big deal.  But, this was a snapshot moment where all the progress he’s made was really evident to me.  He might have been any child (without disability), sitting there rolling the toy around the room.  It was striking.  I wish I had taken a video or picture of it.  But, I’d guess none of the intangibles I was seeing would have translated to these media.  Still, it was a really cool moment, and I’m glad I got to see it.  I was left feeling that all was well and as it should be.  It’s curious how these littlest of moments can bring such happiness.

Strangers to Ourselves

We all change, shift, and grow as people over the course of our lives.  I recently read a summary of a longitudinal study of personality — monitoring the same group of subjects over sixty years.  This study found that a person’s personality and indeed identity shift so much over time (the study followed people from ages 14 to 77) that at seventy-seven year old, one’s personality looks so different from the fourteen-year-old’s perspective that the changes would render the person unrecognizable. We are all strangers to ourselves given enough time… Having a disabled person in your life accelerates this process.

By December of 2008, Koan was about 15 months old.  We knew with some certainty that Koan was going to face some really significant challenges that we had no experience on how to manage his condition.  But, much like the proverbial frog in the boiling pot (he doesn’t jump out because the heat increases so incrementally), these changes were not shocking or revelatory.  The process was so gradual that we just felt like it was just our new normal.  And, yet over these few months, Jeri and I had rethought and changed our beliefs about so many things.  I know by the end of that year, I was already a very different person. 

Looking back, 2008 was a wild year with Koan.  This was the year when we had to come to terms with the “why” question.  We spend so much energy trying to figure out why he had seizures.  This was a really reasonable approach.  Our thinking was that if we knew the “why”, we would have a better, more targeted (and hopefully, successful) treatment plan.  So, we looked into all types of possible different diagnoses.  He had two EEGs that year.  That’s the main test for epilepsy.  Each of these were really interesting…  While Koan was not very mobile, he still did not cooperate with the process of gluing twenty or thirty receptor-patches all over his head.  He also would not lay still on command as required for portions of the test.  Not surprisingly, the results of both tests were ambiguous.  He underwent a large battery of genetic testing, too.  All the tests came back with negative or inconclusive results.  By the end of the year, we knew we had a disabled child, but no idea why or what to expect.  After all the tests, it became clear to me that the why really didn’t matter — since he did not have a clear-cut diagnosis, there was no prognosis or standard mitigation/treatment plan.  We just knew at the end of that year, we had a kid that we needed to love and somehow set the stage to keep him moving forward — even with just small steps.

That being said, it was still a really painful and difficult process to live through.  To qualify for the Iowa Medicaid ID (Intellectual Disabilities) Waiver, we needed to have Koan psychologically evaluated for development.   Jeri and I chose to do this at the University of Iowa’s Center for Development and Disability.  The staff and psychologists there were great — very caring and compassionate.  But, there’s no denying it’s very tough to sit with someone for 90 minutes answer question after question about what your child cannot do.  Even though I thought I was ready, seeing the written report — Koan was chronologically 14 months old, but developmentally performing at 3-4 months — was devastating.  That document codified his condition.  It was real.

I look back now upon what I thought and how I acted when raising my older two kids, Sydney and Tiber.  I spent a lot of time worrying about them.  I know this is normal and natural.  But, from where I’m at now, it seems like such a waste of energy.  Sydney didn’t crawl and walked late — about thirteen or fourteen months.  Since she was our first child, these weeks seemed to draw out very slowly.  But, of course, she did eventually walk.  And, now, no one looks at here and thinks –”Oh… I bet she walked later than other kids…”

Tiber was bit more of a challenge.  He still has some issues expressing himself verbally.  Speech therapy has been really helpful for him.  Tiber also needed some help with attention (medication) when he was in elementary school.  But, like his sister, he’s very, very bright.  The problems Jeri and worked through with Syd and Tiber did demand our attention and focus.  But, looking back the emotional investment I made in these issues was disproportionate to their intensity or importance.  I think about that a lot going forward.  It’s not like Sydney and Tiber don’t have problems crop up.  Some of these are quite serious and demand a lot of attention.  But, my filter for what we get really worried about is now (and I think forever) changed.

I’ve written a lot about perspective shifts.  Having Koan in our lives has made me more present and grounded.  He’s changed my thoughts about disabled people, their value, and what we need to do as a society both morally and ethically to support them.  But, probably more so than anything else, having Koan in my life has given me a deep and perpetual understanding of what really matters.  I think the old saying goes something like this, “The key to life is not to sweat the small stuff.  And, everything is small stuff…”  I’m not suggesting that I don’t spend time and energy on worry.  I wish I could say this was true.  But, the minimum threshold of what I worry about is really different.  I spend (or at least really try) more time being grateful what’s going well than worrying about all of the things that can and have gone wrong.

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)

DHR Guest Post — Happiness, Good Health, and Independence

This post is a guest article I was asked to write for the Iowa Department of Human Rights.  They were interested to hear some thoughts on employment of disabled people from a parent/caretaker perspective.  As Koan turned ten this week, I’ve already been thinking a bit about what the next ten years (and beyond) will look like…

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 after he is finished with school.  To be fair, I have two other children who are not disabled, and I worry about them a lot, too.  

My three main goals for Koan are happiness, good health, and for him to be as independent as possible.  While I don’t want to over-simplify anything, these are really the same goals I have for all three of my kids — including the two without disabilities. These global concepts have really helped my spouse and me in our decision making processes.  We are now better able to focus on the important, big-picture items, and we don’t get bogged down in the unimportant details and minutia. This clarity of purpose has been of the many great gifts Koan has given our family.  

I’ve spent a good deal of time thinking about what life will look like for Koan once he completes his K-12 experience.  I find that I need to resist the temptation to over plan or over think his future.  I certainly do want to be prepared for whatever opportunities he may wish to pursue as he gets older. And, of course, because of his disability, we need to a lot more thoughtful about his future — setting up a trust, launching an ABLE spending account, looking into group living options, etc…   But, at the same time, I also don’t want to pigeonhole him or put him down a path that’s not right for him but makes sense to me. Just like my other kids, he will need to find his own path.  We just need to give him space and time to do that.  I can provide some guidance, but just like with his brother and sister, it’s really on him to figure out what he wants to do and how to leverage and take advantage his strengths.  I merely hope to set up the circumstances to make that possible.

One of the main characteristics of independence, at least in my mind, is employment.  Ideally,  for Koan this would mean competitive employment.  Having a meaningful job not only contributes to financial stability but it, more importantly, gives meaning and purpose.  It instills a sense of confidence that only comes from doing real work.  That feeling of “mattering” ripples into all sorts of other roles in life that have a tremendous impact on well being, too. Competitive employment is one of my highest and most rigorous aspirations for Koan.

While I’m not ready to lower my expectations, I also need to acknowledge that Koan may not be able to attain the goal of competitive employment if he stays on his current developmental trajectory.  And, if he doesn’t reach that milestone, I hope that there are other, non-competitive, employment opportunities available for him.  A “sheltered workshop” should certainly not be the first choice for anyone with a disability.  But, that type of non-competitive environment can provide a great deal of social interaction and meaning if a competitive job were not an option.  What I know about Koan as a ten-year-old is this —  he would find a lot of joy working and interacting socially with others even if it were on tasks that others might find less meaningful.  So, my hope is that when Koan finishes school he has a full array of options and opportunities available to him.  And, again, this is really not all that different than what I want for all of my kids.  

10 Years!

I’ve spent most of my time with this blog looking backward.  I find that reflecting on what’s happened gives me access to insights and even some wisdom.  But, for the next couple posts, I’m going to look ahead.  Tomorrow, Wednesday, September 13th is Koan’s 10th birthday.  Like all children, it doesn’t seem possible that he is that old.  I can’t really remember what life was like before he came or even what I was like.  Koan really did ruin everything… in the nicest way.  

And, while I’m starting to really think more and more about what life will be like 10 years from now (I’ve been asked to write an article for the Iowa Department of Human Right about employment of people with disabilities — I’ll post that here first, of course), tomorrow is a really important day for Koan’s short-term future.  Unfortunately, Koan is having more frequent seizures.  We’ve seen five seizures in the last six weeks.  So, for his 10th birthday, Koan gets to go the University of Iowa Children’s Hospital and visit with the pediatric neurology team.

While for most 10-year-old kids, this would be a real bummer of a way to spend a birthday, Koan will have a great time.  He’ll get to take a trip to Iowa City — he loves going there.  And, he’ll get to see a lot of new people who will dote on him tell him how cute he is (which he is…). So, he’s going to have fun.  As for me, not so much…

The seizures we’ve been seeing lately are a bit different, in terms of intensity, that what we’ve seen over the last couple of years.  We had a great run from about the time Koan was four months old til about age six — no seizures at all.  When he was around six we started to see about one a quarter.  Koan was never diagnosed as a full epileptic, but he did have an abnormal EEG, particularly during his sleep cycle.  So, these seizures almost always happen at night or very early in the morning.  These events were very intense and rather long (10-15 minutes) grand mal episodes.  They would put him out of commission for about 12-18 hours afterwards, too.  He would be pale and very lethargic afterward.  The last few seizures we’ve seen (the last three in particular) have looked and sounded like what all of the others, but he seems fine after a couple of hours of rest.  So, he’s recovering much faster.  I’m not sure if that matters at all.  But, it is a change.

I really have no idea what the care team will recommend for him.  I certainly don’t want to start another run of anticonvulsant medication for him.  But, I suspect that’s pretty likely, however.  I’m worried that whatever they give him (again if we decided to do this) will change his personality — slow him down — mute his expressions of joy.  I’m also concerned that any medication may further hinder his development.  And, like most medications, there’s a therapeutic target zone for these drugs that’s pretty hard to stay on top of with growing children.  So, there will always be doubt in my mind if we are in the “sweet spot”.  I’m honestly hoping we can find a way to not medicate him.

That being said, last spring a colleague I work with on SEAP had her adult child with disabilities (he was in his late twenties) passed away due to complications from a seizure.  He was a really high-functioning guy, competitively employed, literate at the 1st grade level — a very important milestone.  This was a very unexpected.  He, like Koan, was not diagnosed with epilepsy but did have a seizure disorder.  So, I know the seizures that Koan is experiencing are nothing to trifle with and need to be treated.  

Understandably, I’ve been thinking a lot about the appointment tomorrow.  It does seem fitting that we would have it on his 10th birthday.  I wonder if we’ll be entering a new chapter in Koan’s story.  The circumstances sure feel that way.  I suspect tomorrow is just the beginning.  And, that’s a daunting thought: tests, medications, uncertainty.  But, as Joe Strummer said, “The future is unwritten…”  So, I really don’t know what’s going to happen next.  As always, we’ll take it a step at a time and a day at a time.