Lucas Camilo

As mentioned in a previous post, we recently bought a house.  Though I remain ambivalent about home ownership, I’m excited that we get to stay in our neighborhood (just a block away from the house we’ve been renting!), and its certainly a relief to finally have found a relatively wheelchair accessible place with multiple bedrooms on the first floor.  We were also fortunate to have the support of my parents and Krista’s mom which made a big difference given that there were multiple bidders and the house went for significantly more than the asking price.  Indeed, some of my ambivalence around buying a house is due to the current state of the housing market in Seattle, and the fact that so many people – especially people of color in the south part of the city – are being forced out by ballooning prices. I feel extremely privileged to be able to buy such a house in the center of the city I grew up in, and the experience has encouraged Krista and I to increase our giving to organizations that are working towards affordable housing and against displacement and gentrification in Seattle.

All that being said, the main shortcoming of the new house is that unlike our current home there is no way to easily enter it in a wheelchair.  The only way we could get Lucas in at first was to hoist up his chair and carry it up the 6 steps in the back, not an easy task.  So after multiple offers from friends and colleagues to build us a ramp, we ended up commissioning our neighbor Bruce (a raft guide and off-season handyman) to do it.  And as you can see from the pictures below, he’s doing a great job.  We’re considering it a short or medium term solution as we figure out how to best utilize the back porch and yard.  So if you have any ideas…

Meanwhile, on Saturday morning Lucas woke up with blood in his mouth and we soon figured out that another tooth was gone.  For those of you counting out there, that’s the 4th tooth Lucas has lost, meaning he’s certainly ahead of the game for a 5 year old (losing teeth early is a characteristic of kids with myotubular myopathy).  The funny thing about this one was that he literally lost the tooth.  It was nowhere to be seen in his mouth and after fishing around for a while we gave up and went for a walk.  Later that day he and Nonna wrote a note to the tooth fairy explaining the conundrum, and she was kind enough to bring him a cool little ladybug figurine despite the fact that he had no tooth to exchange.

(Update: this morning as Lucas was waking up Krista found a nice, white baby tooth lying on the bed next to his head.  Which is to say that he’s had it floating around in his mouth for the past two days…)

The final bit of news is that Lucas made the front page of the Sunday Seattle Times!  You may recall that a little over a year ago our family was featured in the newspaper as having already benefited from the Affordable Care Act, among other stories of people in Washington state who would be affected by the implementation of the ACA.  Well, the Times decided to do a “one-year-later” update, and as part of the series sent a photographer to grab some shots of Lucas.  On Sunday, we got the paper and found a huge picture of Lucas coming down off the school bus lift, along with his nurse Laurel, the bus driver Mary, and me.  Lucas thought it was pretty cool.

The article is worth reading, despite its shortcomings (including the fact that the Times could somehow only find white people who had been affected by the ACA.)   Lucas is clearly the winner, having benefited from the elimination of exclusions for pre-existing conditions and lifetime caps, and having had his “child-only” plan through Regence go down in price.  Yet the reporter failed to include my quote about how the whole experience has convinced us that a single payer health care system is the only way to go (or maybe he did include it but the ultra-conservative editors at the Times considered it a nod to socialism and took it out).  Indeed, the fact that we require three separate health plans to cover all of Lucas’s needs is ridiculous, and not the fault of the ACA but rather an insurer-based health care system full of complex bureaucracy. The other personal stories show additional challenges people have faced (even as millions have benefited from coverage, improved coverage and/or lower rates). The biggest problems here in Washington seem to involve administrative complications of the new system – which means people spend tons of time getting the coverage they need – and the greed of the insurance companies.  For example, the ACA sets a maximum deductible.  What do the insurers do?  They jack up the deductibles in all their plans to be close to or at the maximum.  For many working people who don’t qualify for Medicaid or subsidies within the exchange, these sorts of changes make it that much harder. Alas, the story of the ACA is a mixed bag, and our conclusion (you won’t be surprised) is that we urgently need to keep pressuring politicians to move towards a single-payer system.  Given what happened in the elections last week that won’t be happening anytime soon, but that doesn’t mean we shouldn’t fight.

And after all that… here are some shots of the new, almost finished, ramp:

As some of you may know, we’ve been involved in a lawsuit against one of the biggest health insurance companies (Regence Blue Shield) since we moved to Seattle a few years back.  An amazing lawyer named Ele Hamburger brought the case against Regence (after winning settlements with the other two largest insurers in the state) over their denial of coverage for “neuro-developmental” therapies.  Though the case focused on Applied Behavior Analysis therapy (ABA), Lucas had the potential to be included because he has required speech, physical, and occupational therapy since early in his life due to his disability.  Therefore, we were asked if Lucas would be a named plaintiff in the lawsuit.  Always up for a good fight, Lucas said yes, and the case has been in the courts ever since.

Well, a few weeks ago Lucas and his fellow plaintiffs (other kids with developmental disabilities) won!  Or rather, the lawyers reached a very favorable settlement requiring Regence to pay $6 million to families who were denied the coverage.  More importantly, going forward thousands of kids with disabilities (primarily but not exclusively autism) will now be able to get the neuro-developmental therapies they need – fully covered by insurance – without any low, artificial limits on number of visits.  It’s shameful that Regence and other insurers denied or limited such coverage in the past, and awesome that Ele and her team forced them into the settlement. (The settlement still needs to be approved by the judges but it seems likely that it will be.)

It turned out to be  a double victory as the Washington state supreme court subsequently ruled that Regence was violating the Mental Health Parity Act by denying coverage to these kids.  As the article says:

“A unanimous state Supreme Court ruling last week provided mental-health advocates with a powerful tool to ensure equal insurance coverage for disorders of the brain and body.  In unequivocal language, the justices tossed out a blanket exclusion of coverage for childhood autism treatments imposed by Regence BlueShield, the state’s largest insurer.”

And that wasn’t all.  After the ruling, the state Insurance Commissioner then declared that all Washington state insurance companies (not just Regence) must notify policyholder that they have the right to review claims going back to 2006. Once claims have been re-evaluated, the insurance companies will be liable to pay for any coverage that was denied in violation of the act.

So even as we’ve continued to struggle with some issues related to Lucas’s school this week and the fact they still haven’t hired a 1-to-1 aide for him (a subject for a separate blog post), we’re feeling good about this victory and excited to share it with you all.  Already some friends who have a daughter with special needs have been in touch with the lawyer here in Seattle about help moving forward on a similar suit in another jurisdiction.

In the meantime, we celebrated last weekend by going shopping for Halloween costumes at Goodwill :)

On Sunday morning Burke got a text from a friend saying that Lucas was on the front page of the Seattle Times.  And when we went online, there we were at the top, featured as an example of a family who has benefited from the Affordable Care Act (ACA), otherwise known as Obamacare.

It was an exciting moment – reassuring to have trusted reporters with our story and feel like they got it right, gratifying to know that Lucas’s story can help put a face (and dare we say, a pretty irresistible face) on the importance of expanding health coverage.  It’s also exciting that in a time of so much bad news – paralyzing budget battles in Congress, growing inequality, climate change disasters, as so on –  that its possible to be part of a media piece that features good news: millions of people in Washington state and across the country will soon have access to health insurance, and therefore health care.  The Seattle Times piece is relatively short and posted in full at the end of this post.

Lucas is taking his new fame in stride.  His teachers, therapists, and principal were all full of congratulations yesterday.  We hadn’t even shown Lucas the article, but he’s so happy just to be back at school that he mostly ignored the hubbub.

The hard part of the whole thing is knowing how much further health care reform could have gone.  While the ACA is making some critical, life-saving fixes to our broken health care system, it feels like it’s put a wimpy muzzle on an unwieldy and dangerous monster.  (And we’re feeding the corporate beast at the same time by requiring people to buy private insurance.)  It’s great that insurance companies can’t deny Lucas coverage because of a pre-existing condition.  And it’s great that lifetime caps are gone, and that Medicaid will be expanded (in some states at least).  All of these changes especially benefit people with disabilities and chronic illness, so of course we’re in favor.

But here’s the question: how is it that being forced to buy a second insurance plan for Lucas to cover his health care needs is somehow a happy ending? If you read our “positive” story closely, you could certainly imagine a better outcome.   For example, imagine that we didn’t have to spend months battling with insurance companies to get Lucas the home nursing care he needs.   Or imagine that we didn’t have to pay a second premium out-of-pocket… or argue with administrators over the phone to figure out which of his insurance companies would cover physical therapy…

And while we’re at it, let’s just imagine that the for-profit health insurance industry disappeared entirely… and that we all got improved Medicare-like benefits… and that EVERYONE could get the same coverage Lucas was entitled to, regardless of their income level?  Of course it’s not politically likely any time soon, but we’re allowed to dream, right?

Note: You can read some previous rants we’ve written about Lucas and the health insurance industry here and here, and the full version of how we ended up with multiple insurance plans here.

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From the Seattle Times

Insurers must accept all children, even with pre-existing conditions

In the “old” system, Lucas’ pre-existing condition, a rare neuromuscular disease, would have prevented him from being able to get a child-only health-insurance policy.

First – thank you to everyone who read through our last post and offered support for our journey of fighting with health insurance to get Lucas’s needs met.  The good news is that we’ve won a critical battle — Lucas’s second private insurance plan has agreed to pay for his nursing care.  It’s approved only through August, but it’s likely to get re-approved fairly easily every few months.  We spent the week breathing many a sigh of relief.  We knew we’d get coverage eventually, but it’s nice not to have devote any more time and energy to the battle for now.

We’re remiss in posting here because we went from feeling fairly hunkered down and far from friends to having them all sleeping in our house.  Krista’s friend Kathy from the Bay Area was here for a couple days in the end of April.  Then – all in one week – we had visits from not one, not two, but six friends visit from DC and Philly.  (It was awesome to see you Dan, Dana, Carol, Annie, Max, and Jess!!!)  It was especially fun for Lucas to get to show off the new books he’s memorized, and exciting to show our guests around town.  The weather’s made a dramatic turn toward spring, so we took people on walks to the lake, and Lucas got to show Max and Jess around the Seattle aquarium.

Maybe not coincidentally, Lucas has recently discovered the word “awesome.”  So one of our favorite new games around here is “what else is awesome?”  Lucas loves words that get extra stress, emotion, or oomph behind them, so when he tells us that clownfish are awesome, he says it with feeling.  “Clownfish are aaaaaawwwwe-sooooommme.”  And then we ask him “what else is awesome?”  And he names another species of animal, like “ruby-throated hummingbird is awesome” or “macaroni penguin is awesome.”  And then he goes through his favorite books, starting with “Ridiculous is awesome.”  He’s started asking us to chime in too, by saying “mommy do it,” or “daddy do it.”  Having your two-year-old lead you through an exercise in gratitude is indeed awesome – semi-religious and totally hilarious.

Another highlight of the past couple weeks have been our first two NW hiking adventures with Lucas.  On Saturday we went back to Seward Park, this time for kids activities related to international migratory bird day.  We arrived just in time for the hike up to see the bald eagles nesting.  We were really excited to find out that the park had paved trails all the way up, so we joined the other families.  At the top of the hill we indeed got to see a bald eagle pair, with the mother sitting on eggs in her two-ton nest while the father flew around the surrounding trees.  Lucas gave a small grunt to acknowledge the eagles, but he mostly asked for hummingbirds.  So at the end of the hike, having spotted exactly zero hummingbirds, we bought him a new hummingbird feeder.  And he was thrilled.

And finally – your bonus for having read this far – we bring you Lucas’s first hike in the foothills of the North Cascades.  We’re getting pretty adept at packing for a medically complex kid.  We bring vials, tubes, catheters and syringes of sterile water.  But when a major poop incident struck, we were ill prepared – no back-up pants!  Lucas, fortunately, is still too young to notice how hilarious the whole thing was.  (For the record, we did eventually put Krista’s jacket over his legs.)

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.

As Congress finally takes off for spring recess this weekend, health care reform has officially become law.  It’s been a long time since we ranted on this blog about the state of our country’s health care system, and lamented the need for profound change in the system, in part based on the struggles that we had with the insurance industry while Lucas was spending his first 3-months of life in the hospital.  Well, reform has finally arrived so we figured we should weigh in on what it means for our family, and beyond.

First, we believe that legislation passed by Congress can and should deal with the inadequacies and injustices of our country’s social system.  Which is to say, we believe that our leaders in government have a responsibility to take action when a large portion of the population is being discriminated against or are not receiving the services necessary to live a healthy life.  Such was the case with the passage of the Americans with Disabilities Act in 1990, a piece of legislation that Lucas has already benefited greatly from (along with millions of other people with disabilities); such was also the case with Medicaid, which since the 1960s has provided millions of poor people with necessary care.

We say this, in part, to starkly distinguish our critiques of the health reform bill from those of the so-called “tea party” movement.  We believe that this bill is insufficient not because it mandates people to buy health insurance but rather because it doesn’t go far enough to ensure that all people in this country will have access to affordable health care services.  The fact that the insurance industry by and large supported the bill is a bad omen, which stems from the failure of the bill to create a public alternative to counter the unfair, high costs set by for-profit insurance companies.

We’ll refrain from writing about other shortcomings of the health care reform legislation, but we will say that we can only hope, perhaps naively, that this is the first step in the process of creating a single-payer system in this country.  In the meantime, we want to point out a few positive aspects of the bill, which include some of the provisions that could benefit Lucas down the line.

Perhaps most importantly is the provision which makes it illegal for insurance companies to deny coverage to children with pre-existing conditions.  Unlike some of the other positive changes in the bill which won’t be implemented until 2014, this provision will go into effect sometime in September.  For now Lucas has coverage through CISPES but this won’t be the case forever, and we’ve worried about what Burke switching jobs and therefore insurance carriers might mean for Lucas.  On a broader scale, this provision protects children with developmental and physical disabilities from being dropped by insurance providers because of an illness or diagnosis, and that is most certainly a good thing.

As another article points out, the health care reform bill also expands coverage for mental health as well as home and community based services.  Interestingly, these are among the things that have been denied by our current primary insurance provider, United Healthcare.  For example, we recently found out that the coverage for some MRIs – which tested Lucas’s early brain development following his brain injury at birth – was reversed by our insurance company, meaning that we may have to pay over a $1000 out of pocket for those tests.  United also denied coverage for Lucas’s home nursing despite the obvious medical necessity of having a tracheostomy and a ventilator.  Only though Health Services for Children with Special Needs – a Medicaid funded program – is Lucas currently able to receive home nursing.  Finally, United refuses to pay for Lucas to see a child development specialist at Children’s because she’s a psychiatrist and not an MD.

So just looking at our own situation it’s clear that there are significant benefits of the new health care legislation, despite all of its shortcomings.  Another reason that we’re happy that it passed, though, is that the failure of some sort of reform would have been interpreted as a victory for Republicans as well as the hateful, ignorant, right-wing “tea-baggers”.  We both had the unfortunate experience of coming face-to-face with the mostly-white, mostly-male protesters with “Don’t tread on me” signs who descended on Washington DC last week and proceeded to yell racist and homophobic slurs at House Democrats, and even spit on one black legislator.  (We tried to think of a joke about the ridiculousness of calling Obama a communist, but some of these people are just too damn scary to laugh at.)

By contrast, a vibrant, hopeful, and much larger group of people came out to the National Mall last Sunday for a huge mobilization in favor of immigrant rights and reform to our current immigration system.  We took turns marching last Sunday and then told Lucas about the colorful signs and chants that we observed.  Our friend Gabe wrote a great article about the rally for the Nation, which emphasizes the way in which the “March for America” so brilliantly contrasted and undermined the ugliness of the Obama-hating tea baggers.  So while we are grateful to those that for who have fought for changes in our system that benefit children with disabilities like Lucas, we are also grateful to those who continue to fight for important steps like REAL reform to our immigration system.  Says Lucas, “hasta la victoria!”

A couple days ago Burke wore an old classic CISPES T-shirt into the hospital. It’s a cool shirt with three grainy, black and white photo images and the word “Resistencia” in big letters. When Lucas’s medical team came to his room for the morning rounds the doctors asked about the shirt. Burke thought they’d all love it, and he explained that the woman featured in the images is a nurse in El Salvador who is on strike to defend the public health care system. In the pictures she is bending over, picking up a rock, then winding up to throw the rock back at the riot police who are attacking the hospital where she works. Burke’s enthusiastic story was met with silence and awkward nods from the team, and perhaps that was fitting. Though there’s an acknowledgment around here about the failures of the current health system, few people are ready to hit the streets to make it change.

Which brings us to our current predicament. This past week our health insurance company has been testing every ounce of our patience. While Lucas is clearly ready to come home, our insurance is stalling his departure. For ten days now, somewhere in a United Health Insurance office, our list of medical equipment that Lucas needs to come home – including his vent and trachaestomy supplies – has been making it’s way from the fax machine in-box to someone’s desk. Every day we call and our case manager calls and we get a different answer about what it will take for someone to read the request. Finally yesterday morning we got word that they were going to OK the list of things that are clearly medically necessary and clearly covered by our insurance. Phew! We celebrated because the timing is down to the wire. We needed the approval yesterday so we could get the equipment into the hospital today so the hospital folks who screen the equipment could approve it before they go home for the weekend. Then Lucas will switch over to the home vent and we’ll practice with it over the weekend and bring him home on Monday.

And then a few hours later we got another call from United’s representatives. They said that they’ve OKed the out-of-network medical supply company and the list of items but they won’t pay the quoted rates. We asked if that means we’ll have to (or be able to) pay the difference, but have yet to get an answer. It is enough to make you want to pull your hair out and strangle someone with red tape. While Burke has tried to be level headed, and Lucas just looks cute and Zen-like throughout, Krista is trying frantically to find someone at United to call and scream and cry to… and to ask them if they’d be so difficult if it was their baby who had never seen the world outside the hospital walls. As our nurse over the last few days put it, “This would never happen in Poland!”

Indeed. During this time of a major national health care crisis, with Congress about to vote on measures that will just begin to fix the most egregious of problems (if not make certain things worse by mandating that everyone buy terrible private health insurance), questions about improving the quality and accessibility of health care suddenly feel very personal. Polls show that people who have health insurance are the ones who most fear health care reform, which is hard to understand given how terrible insurance companies are known to be. In our case, the red tape doesn’t even seem to respond to a profit motive – if United wanted to save money on us they’d do everything possible to get Lucas out of the hospital NICU asap.

Of course the government is known for red tape too, but in our case Medicaid/HSCSN has moved much faster than United, thanks in part to a couple people at the DC Medicaid office who helped us expedite our application so we could get home nursing for Lucas as quickly as possible. We applied for special coverage for Lucas two weeks ago – he’s eligible because he needs a ventilator to breathe – and on Monday we were accepted. By midday Tuesday a representative from the agency that works with kids with special needs kids in Washington DC came to the hospital to meet with us and tell us about the program. She told us that they will cover all Lucas’s medical bills that private insurance doesn’t. Wow. Imagine if everyone in this country had a person who visited them with those magical words. Thousands of people, maybe tens of thousands, would be spared bankruptcy, losing their homes, and total disruption of their lives. It’s a nice vision.

While this process has been difficult and emotionally trying, we’re also very aware of the fact that we have it easier than many, if not most, people in this country that struggle with health issues. For one thing, we actually have health insurance unlike millions of people in this country, and even if they screw us over sometimes, they are paying for most of Lucas’s enormous medical care. But there are other ways we have it good too. We’ve grown up with race and class privilege, which among other things has given us the tools and experience to work the system to our benefit. We know what questions to ask, who to push, when to wait, and where to look for other resources. And we usually get what we want in the end. Under normal circumstances we both try hard NOT to use our privilege for personal gain, but in this case we’re working it as much as possible for Lucas’s wellbeing, and at the same time trying not to take away from anyone else with less resources in the process. So although it is infuriating that we can’t make everything work on the exact timetable we’d like, we know that we’re doing our best for Lucas and that we’ll make sure he gets the best care possible out of a broken health care system.

And of course we’ll work not just to Lucas’s advantage, but also in advocating for a health care system in this country that takes care of everyone’s needs. And we’ll dream of the day when we can take “Resistencia” T-shirts to all of Lucas’s doctors and they’ll get excited about the idea of hitting the streets to expand a vibrant, holistic, high-quality public health care system. And we’ll dream of Lucas out there will his fist raised too.