Lucas Camilo

We’ve ranted about the challenge of getting good health care coverage for Lucas before, most recently a few weeks ago when Krista talked about the pains of moving as it relates to insurance – about fighting “an industry that has billions of dollars which it mobilizes to justifying denying necessary services.”  Back in 2009 at the NICU we wrote a rant about how exasperating it was to get Lucas out of the hospital.  And about two years ago we discussed the benefits of the Affordable Care Act as it related to Lucas and our life (even as we acknowledged that the legislation was insufficient to solve our country’s vast healthcare problems.)

Now it’s time for another such missive, given some recent developments with our post-Seattle move insurance situation.  It’s not always fun to write this stuff out but we really believe that these stories need to be told, that only through talking about the shortcomings in our system and directly confronting the insurance companies will things ever get better.

So…. as you know Lucas is a complex, medically fragile kid.  Because he has a tracheostomy and uses a ventilator it’s necessary for someone well-trained in suctioning, CPR, changing trach tubes, etc be with him at all times.  That means means one of us or a vent-certified nurse.  Lucas’s nursing coverage in Washington DC came through the Medicaid-funded Health Services for Children with Special Needs (HSCSN) which he qualified automatically for after spending the first 3 months of his life in a hospital.  Moving to Washington state we knew it would be difficult to get approved for a Medicaid waiver, and frankly we’d prefer that private insurance cover all of Lucas’s healthcare needs – especially knowing that Medicaid is getting cut and there are families out there that need the coverage a lot more than we do.

So even though CareFirst, our insurance company, has an exclusion for private duty nursing in their contract we decided to submit the nursing claims and fight it out.  That was back in February as we were preparing for the move.  They denied coverage for Lucas and we immediately appealed, insisting that there was medical necessity and referring to the clause in the contract in which nursing should be provided  in lieu of hospitalization.  We provided about a hundred pages of supplemental documents – doctors notes, previous legal precedents, etc.   We spent lots of time on the phone with case managers, doctors, social workers, and a lawyer, knowing all along that it was an uphill battle but one that we had to fight: as much out of principle as necessity since some of those same professionals assured us that Lucas would eventually get a Medicaid waiver and qualify for the Medically Intensive Child Program in Washington State.

On Monday we finally heard back from CareFirst that the denial had been upheld.  We can submit a second appeal to the DC government but we have to wait four months.  Attrition, that’s their strategy.  And it looks like this time they’ve beat us; it would cost a ton to pay out of pocket for nursing while we wait to submit another appeal, and we’re not ready for the Medicaid fall-back.

We’re fortunate to be working with an awesome lawyer here in Seattle who has a background in community organizing and is providing pro-bono support.   She foresaw that the denial would be upheld and recommended that we purchase a child-only insurance plan for Lucas (which is to say, a second insurance plan beyond the one we get through Burke’s work).  Part of the problem we’re dealing with is that the CareFirst insurance was issued in DC and therefore is subject to DC law.  Washington state has much more progressive statutes related to health insurance, which, combined with the Affordable Care Act, have led to successful appeals challenging Washington-based insurers.

So Lucas now has a second health insurance plan, this one through Regence BlueCross that we purchased on the open market – it has a moderate monthly premium but relatively high deductible and co-pays.  This plan officially doesn’t cover nursing either, but our lawyer has helped other families challenge Regence around this issue and won.  So she’s confident that we’ll overcome their nursing exclusion so that Lucas will finally have at least a few days of nursing a week covered by insurance.  This strategy of buying insurance for Lucas is only possible because of health care reform.  A few years ago, Lucas’s “pre-existing condition” (in quotes because it’s a phrase created by the insurance industry) would have meant we had no option but to hope the state would fill the gap.

Cha-Cha the penguin was Lucas's favorite house-warming gift

Saturday was our Seattle house-warming party and it was a great!  Thanks to everyone who stopped by and brought gifts.  It was especially “warming” to know that we actually know lots of people here – from family, to elementary/high school school friends, to people we’ve gotten to know through organizing, to recently-encountered neighbors, many of whom also stopped by.Lucas was a bit overwhelmed by the party at certain moments, especially the abundance of little kids running around, but overall he was a great sport.  And it was nice for us to introduce him to more people.

We continued to be awed by Lucas’s intelligence, creativity, and sense of humor.  Sometimes it’s a wonder to see the mind of a two-year old at work.  A couple recent examples:

* Krista was on the phone with Aunt Megan and Lucas was growing impatient with the chit-chat.  Megan let out a belly laugh, which sounded almost fake, and suddenly Lucas lit up and said “Heh-Heh-Heh!”  Krista and Megan stopped talking and asked Lucas, “did you just laugh like Aunt Megan.”  Lucas’s response?  A huge smile and then “Heh-heh-heh!”  Now he’ll do it on command, and when everyone in the room cracks up he’ll smile and repeat “heh-heh-heh!”, pleased with himself at being the life of the party.

* Lucas loves letters and words and has come up with various ways to enjoy and explore them.  People who have seen him in action know that he can spell “p-e-n-g-u-i-n” with ease, signing the letters as he also speaks them.  The penguin feat is memorization of course, but now he’s starting to actually sound out words and understand how letters go together, predicting vowels after a consonant starts a word (even if he often gets the vowel in question wrong at first.)  He also really loves saying long words and has whole sections of books memorized.  One of his current favorites is actually an adult book about inter-species friendships.  He can tell you that there exists an elephant “sanctuary” in a place called “Hohenwald, Tennessee” where an elephant and a dog, “stepping over social traditions,” became best friends.   Finally, our friends Sha and Alexis recently enticed Lucas during a skype chat to attempt repeating various tongue-twisters (thus the title of the post) and he loved it.  Because of Lucas’s low-muscle tone and respiratory issues its still often hard for most people to understand what he’s saying, but the effort, excitement, and intensity with which he goes about exploring letters and words is really awesome to witness.

* The other day we took a great walk in Discovery Park and as we were heading back to the car we put our arms around each other and asked Lucas if he was having fun with mommy and daddy.  He looked up at us and said “love!”  Lucas’s concept of love derives primarily from his favorite penguins Roy and Silo, two male penguins that fell in love in the Central Park Zoo and eventually raised a chick together (with the help of the zoo keeper.)  Upon seeing us hugging like Roy and Silo Lucas suddenly made the connection that we too were in love.  We asked him if mommy and daddy love each other.  He said “mommy-daddy… loovvve” and then commanded us to hug again.  We did and he got a big smile on his face, and when we tried to wrap up the game and continue walking (it was a bit chilly that morning) he exclaimed “hug!” again, and then sat back to watch, admiring his work and how happy he had made us.

Of course, he can still be completely stubborn and exhausting to be around at times as well.  For example, despite Lucas’s apparent literary pretensions the top book on his reading list right now is one called “Charlie Clownfish and Annie A.”  We have piles of inventive, colorful, funny children’s books around the house and he picks the totally senseless and absurd one… to read over and over again.  Yesterday his nurse must have read it at least a dozen times, with Lucas insisting “AGAIN!” each time the book was completed.  Oh well…

A walk in Seward Park, near our house in Seattle

The sun was out this past weekend, and it shined light on the many highlights of being in Seattle in our new home.  Here are a few:
(to best view the album click on the first photo to enlarge, then click anywhere on the photo to scroll through the rest)

And there’s been more.  There was a visit from Aunt Megan over a week ago now (a whole two days without Lucas photographs… what kind of parents are we?!?), visits from Nonna and Papa, and an upcoming visit from Gramma Susan, too.  Lucas is mostly loving the attention, though he does get overwhelmed at times.  Like when some neighbors walked walked up to him the other day to say hi and Lucas – usually quiet when he meets new people – immediately belted out a loud-and-clear “bye, bye!”  But overall we’re happy about all the visits and looking forward to a house-warming party this weekend.

In the last post we mentioned how great it is that Lucas is doing well because it leaves us energy for “other aspects of the transition.”  Well, here’s the blog post about some of those other things.

I’m tempted to just post here our forty plus pages of google doc notes that Burke and I created to track and communicate with each other everything related to the move.  Or share a link to the online database we created just to keep track of the professionals we need to talk to in Seattle about Lucas’s life.  There are the nurses, social workers, home care administrators, therapists, evaluators (Lucas is constantly being evaluated), respiratory therapists, new doctors, advocates, equipment repair people and more.  I’m not really complaining – when you need help, it’s good to have a long list of people who might be helpful.  But the reality is that I wish we didn’t have to deal with all these people.  There are days when it feels like we need nurses in our home to take care of Lucas just so we have the time to talk to other people about coordinating his care.

Probably the single most difficult meeting we’ve had was an appointment with a new pulmonologist when we had been here just three days.  She was young and overly ambitious, and she immediately wanted to make major changes to Lucas’s vent settings.  She went so far as to suggest we admit him to the hospital for a few days so she could “play with his settings and observe him.”  The act of holding ourselves to our seats and acting polite as we declined her totally ludicrous proposal took about all the energy we could muster.   Or really, more than I could muster.  I came home and got in bed and cried.  It felt like there’s just so much in flux right now – the idea that she’d be willing to risk Lucas’s short term health in order to better understand his vent settings felt like too much.  We both suddenly missed our doctors in DC who believed that if Lucas was doing as well as he possibly could be doing, why change anything?  And who trusted us.  And who noticed that we do most of his care-giving and deserve a little bit of credit for how well he’s doing.  Deserve at least a pat on the back for how well we’re all doing.

And for the past few weeks there really have been just so many new people to meet and equipment to learn.  We got a new pulse/oxygen monitor that burned Lucas’s toe and alarmed unnecessarily in the night.  There are all the people that come to evaluate Lucas – measuring and ranking and quantifying Lucas’s abilities and disabilities, a totally messed up process that is a necessary loophole to get things that are sometimes only marginally helpful.  For example, Lucas is going through many evaluation to get us Early Intervention services, which will provide therapies for him that our insurance would pay for anyway.  So mostly what we get out of the many hours of evaluations and phone calls and paperwork is another well-meaning social worker in our life.

The biggest time suck for us over the past few weeks has been the struggle to get insurance to pay for Lucas’s nursing.  It’s hard to know how much to get into here, because the saga is extremely long and complicated.  We’re fighting with our insurance, which is part of an industry that has billions of dollars which it mobilizes to justifying denying necessary services.  I used to naively think that “medically necessary” meant insurance had to pay for it.  Nope.  I’m sure many people reading this will laugh – anyone who’s had serious health issues knows that need has little (nothing?) to do with insurance actually covering something.

We’ve been fortunate to meet some incredible people in this fight – doctors and social workers and now a killer lawyer who are all going above and beyond for us in this fight.  The political moment – with the Supreme Court hearing arguments that it is un-American to try to fix this broken system – combined with the fact that we have to waste our time fighting this rather than hanging out with Lucas, feels like insult on top of injury.  Possibly the most painful part of this is knowing that we have so many resources, and that most families living with severe disabilities have to do this with far less money, time, and space than we have.

So of course we try to find ways to make our fight useful to more people than just Lucas.  We found out that in Seattle, the main home health supply company that provides ventilators to kids does not provide the small, travel lithium-ion battery that we have.  Here they give families what we call the “boat battery” – a gigantic battery that probably weighs 10-20 times more than the small one.   When they tried to hand us the boat battery, I yelled at the (quite shocked) nice home equipment ladies.  They told us they can’t get the lithium batteries, but that simply can’t be true, since most of the MTM kids we know have them.  Burke was out (we’re good at taking turns being the “reasonable” one when the other is too upset to talk), so I just snapped.  “Do you have any idea how much more mobile we became when we got the lithium battery?!  This is a mobility issue for all families!”  They said they’d see if they could find a way to get us a battery – maybe they’d look for a donated one for us.  I said no.  Not just for us.  Everyone with a vent needs this battery.  They need to figure out how to make it happen for everyone.

On top of the stress of all the meetings and appointments and evaluations is the fact that we’ve uprooted ourselves from our friends and community in DC.  I miss having an amazing number of friends who I knew I could call when we were tired who would come play with Lucas, starting with Sha just up the street.  Its not that we even called for the help all that often, but just knowing it was available turns out to have been a major source of comfort.  Last weekend, with Burke gone and the rain pouring down and all this mess of services to navigate, I longed to be back in DC close to our friends there.  And we weren’t even alone for 24 hours – Ashley brought Lucas’s cousins over in the evening and we got some company and a change of pace for a bit.

And of course there are still all the great things about being here.  New friends are already welcoming us in wonderful ways – dinner with Chris’s family, then dinner with CISPES friends, and then two other sets of friends have called to tell us they’re on their way over with food.  It’s also nice to have Burke’s parents close and stopping by to read Lucas his favorite books and join us for excursions to the zoo or aquarium.  So we’re doing great – still endlessly grateful for all our family and friends’ love and support.  But since there are the darker days when it’s just the three of us and our long lists of calls to make, emails to return, meetings to set up, and people we don’t want to need necessarily in our lives… we wanted to find a way to try to write about those moments, too.