My Two Cents on SCHIP

My family has never qualified for SCHIP, because our income is higher than 200% of the local poverty level. We might qualify if we lived elsewhere, because our city has such an astonishing amount of the population living in extreme poverty, but we've always managed okay without it.

I don't think people realize the absolute life and death importance of SCHIP to kids much like my own. When Susan's health was most unstable, our out of pocket medical care costs approached $1000 a month. That's after private insurance - very decent private insurance compared to most - had already paid out for what was covered. We managed with help from family, and by taking out some stunningly large mortgages on our house. I ordered formula and supplies from eBay to save some money. Whenever Susan saw a doctor, I would load up a bag with free samples. There were certainly times that I mentally justified the cost of the co-pay to see the doctor with the value of the free formula I could get.

Now, we're middle class people. We're better of than most. Even after I had to quit my job to care for Susan, I was able to continue working on a freelance basis for my former employer. That income made a huge difference. Because we were educated and had internet access, I could spend hours online researching less expensive resources. I could fight with the insurance company to maximize coverage. But what do you suppose happens to kids whose parents don't have the resources we have? I'll tell you:

Sometimes their parent will quit his or her job so that the family qualifies for Medicaid.

Sometimes their parents divorce so that a single parent can qualify for Medicaid.

Sometimes the child will be placed into a residential facility, a nursing home, because then he or she could qualify independently for Medicaid.

And sometimes, the child just dies.

Isn't it strange that impoverished families often get better health care than working class families? It takes very little income to disqualify a family from Medicaid coverage. Medicaid covers consumable supplies, hypoallergenic formulas, sometimes even in-home nursing for severely ill people. Private insurance rarely covers any of those things, and let's face it, fewer and fewer working class people have any insurance at all.

Susan received monthly injections to prevent RSV, a severe respiratory virus, each winter until she turned three. Those injections cost our insurance company $2200 a month. That's one shot, once a month, for five months a year - $11,000 a year. I do not doubt that those injections kept her out of the hospital those winters. She had some severe colds, but no major viral infections. For healthy kids, RSV isn't that big of a deal, but for those with weak immune systems it can trigger a fatal series of infections.

Medicaid usually covers that shot for preemies their first two winters, if the family meets the income guidelines. But a working class family, ineligible for Medicaid but without very good private insurance, would be on their own. Those families are put into the position of making a cost-benefit analysis on potentially life-saving health care. I've known some who could not afford it who essentially quarantined their child through the entire cold and flu season. These children, and their primary caregivers, are basically imprisoned for months every year, because they can't afford a single shot per month.

Is this really the best we can do as a nation? Is THIS the best medical care the world has to offer?

SCHIP fills the gap between Medicaid and private insurance for thousands of working-class families. These are folks doing what they're supposed to do: contributing to the economy, paying their taxes, and trying their best to take care of their kids. Cancelling SCHIP won't save the government any money: it will just force more families into poverty, when they'll qualify for Medicaid and other social services as well. It certainly won't improve medical care: it will just force parents to postpone seeking medical care until a child is so ill they will require hospitalization or institutionalization, at which point Medicaid will pick up the tab.

The sole function of eliminating this program is to make a political point: that certain politicians don't think the government should be involved with health care. So why make kids the political football? Why not cancel the new Medicare Drug program? Well, people on Medicare can vote. Kids can't, and the parents of sick kids are too overwhelmed and broke to put up that much of a fight.

The entire argument against "socialized medicine" - a Republican's bogeyman - is premised on the outdated idea that most people have a family doctor on whom they can rely for primary care. That might have been true forty or fifty years ago, but with more people living in urban areas, and with the increasing specialization of medicine, the family doctor is an anachronism. If my kid needs to see a developmental endocrinologist, or nutritional gastroenterologist, do you really think I have a choice of who to see, or even if I did that I would have any way of making that decision. I go to who the insurance company tells me to go to.

Our current system gives to private insurance companies every single power that opponents of "socialized medicine" decry. The only difference is that instead of a government bureaucracy making health care decisions, you have a private bureaucracy making health care decisions - and the private bureaucracy exists to maximize profits, not health. Long waits to see a specialist? It takes us months to see a G.I., even if Susan is seriously ill. I've yet to meet a Canadian or Brit who would trade our health care systems for a single day.

While we've not had to take dramatic measures to pay for Susan's health care (if you don't consider debt too dramatic), it's certainly an ever-present issue in our lives. Susan's dad would probably have changed jobs if we weren't too scared to disrupt our health insurance. No insurance company would cover Susan if they weren't required by a group coverage agreement, and there's no telling that a future employer would offer a decent group plan.

I hadn't meant to ramble so long about this, but I am very worried about what kind of nation we have become if we can turn our collective backs on sick kids just to make a political point and pander to an ideological minority. This is America, dammit. We're better than this.

My three-year-old goes hungry because of "protocol"

There was a big story in the news here that on the first day of school for the state-run Recovery district, something like 40% of the registed kids didn't show up. It turns out that many families had registered their kids at more than one school - probably one Orleans Parish and one Recovery, and maybe a private or charter as well, to cover their bases in case their first choice turned out not to be ready to open by the first day of school. Last year lots of kids got turned away either because the school wasn't ready or because the child's enrollment had been lost. It's all administrative chaos. Without any way of predicting numbers, there's no way to set budgets, assign classrooms, etc. You'd think someone would have a central list of all the students in public schools and what schools they were assigned to - but no.

Both the teacher and the aide said Susan did really well yesterday at her first full day of school. I think they're surprised, having been prepared for the kid on the year-old evaluation. My big beef today, and it's a big one, is that they've decided they have to have orders from a gastroenterologist that says she is allowed to eat food orally. We already submitted a diet plan from the pediatrician that explicitly said she should be fed orally first, and then get a tube feeding at lunch time to supplement what she takes by mouth. Strangely enough, it's not the tube feedings that have to be approved by the G.I., just the oral ones.

Since she doesn't see a G.I. regularly (her feeding issues aren't digestive, they're behavioral), I don't have a doctor who will just dash off a script for me to fax them. The doctor wants to see her first, which I can understand. The thing is, we had the feeding plan written assuming she'd get oral feeds, so the one tube feeding at lunch time is not enough for the whole day.

She was hungry today, and was reaching for food at snack time, and they wouldn't let her have it. Can you believe this is SUSAN, and she actually wants to eat something and they won't let her???

I'm going to beg the GI nurse to squeeze her in tomorrow. I'm pretty sure the GI requirement is yet another rule the school and/or district (I don't know which) has pulled out of its ass, but I don't have time to fight with them on it.

It seems that the administration is just gridlocked. The more I've thought about it, the more troubled I am that they let a 3 year old go hungry, because protocol says they need approval from a specialist instead of her family doctor to let the kid eat. Something is just upside down there, and part of me is feeling that it's nothing but harassment to make us give up and go away.

Three steps forward, two steps back.

It's the story of my life, I tell ya. I'm just going to copy and paste some posts from the x-treme therapy thread at TableTalk, where I've been chronicling our struggle to get Susan into school.

6-22-07

We're still getting bounced around between two school districts and the charter school Susan is supposed to start at in the fall. She hasn't had any state-sponsored services since she aged out of EI last November. I have providers lined up who work for the state-run school district, but nobody in administation can agree on who should do the EIP. The school itself is balking about taking her unless she gets an aide from the city school district. I'd be perfectly happy for her to have an aide, but I don't know how much the city is going to want to pay for one. We're going to have to bring in a lawyer for the next meeting, and I had hoped to avoid going that route. There's already a big lawsuit in the works about the charter schools turning away special needs kids outright.

Laws? What laws? This is Louisiana, we have no laws!

8-29-07

Susan's starting at public school next week, in a Montessori pre-k classroom with 3, 4 and 5 year olds. That should give us access to some more resources than we've had this past year, both for evaluation and for therapy. If it becomes apparent that she does have some kind of permanent disability, I am going to need to re-evaluate whether we stay in Louisiana or move to another state with better programs. The school she's starting in is very good, and goes through 6th grade, but if we're going to have to relocate eventually it would make more sense to do it when I finish law school than after I've been working here for a number of years.

9-5-07 (10 am)

Our ongoing saga had another plot twist this morning. After talking up going to "big girl school" for the last two weeks, and making two advance visits for her to get comfortable with the classroom and teachers, Susan was turned away from school this morning because for some reason the aide wasn't ready for her to start. She'd already been pushed back ten days from the official first day of school. Yesterday she had her goodbye party at day care. I guess it was premature.

Heh. Premature.

I am SO TIRED of this shit.

9-5-07 (7:40 pm)

It was just today that they turned her away. They told me the Friday before the first day of school that she couldn't start right away because the aide hadn't been identified yet, but committed to today. That's already six missed days of school, but I accepted it. I was told then that we'd have the IEP meeting today, I'd show the aide how to feed her, and she'd be all set. Susan visited the classroom with her dad last week and with me yesterday. While I was there yesterday I asked the principal what time they expected the IEP meeting to be, so DH and I could both be there. She didn't know and said she'd have the coordinator call me.

The coordinator didn't call. We got a call at 6:20 p.m. yesterday from someone at the district, saying the IEP meeting wouldn't be until Tuesday next week. This was on voicemail, she said Tuesday was the first time everyone who needed to be there was available, bla bla bla. Note that they never asked if WE were available and the scheduled time conflicts with one of my classes. The message from the district didn't say anything about attending school until Tuesday.

So this morning DH took her in, and whoever was watching the class (the teacher was at CPR training) sent them to talk to the principal. The principal told him that Susan can't start school until she has an IEP.

I'm pretty sure that this rule that she can't attend without an IEP is bullshit - after all, most kids DON'T get IEPs. It's also bullshit that they can't get the damn meeting scheduled. She's been on the roll to attend this school since March. The school and the district keep saying it's the other's job to schedule IEPs. It seems like rather than keeping her out of school, they could just hold the freaking meeting with whichever people ARE available and fill the others in later.

The lady at the district who called yesterday evening claimed to have tried several times to reach us - but never left us a message before then. They have four numbers for us, all of which have voicemail. Our cell phones have caller ID too, and there haven't been any missed calls from the district. What the F'ing F?

9-5-07

Fortunately, her old day care hasn't filled her spot yet so we just took her back there, and they can take her until the school gets its shit figured out.

I'm not sure how much she understands. We'd been explaining to her about going to big girl school, but she wasn't upset about going back to day care. DH and I are pretty upset though. It feels a lot like last year when the university's day care said they didn't have space for her, but strangely all the other law students' kids got in. She's just this sweet little girl that nobody wants to be bothered with.


9-6-07
Oh yes, the lawyers have been called. We had actually gotten an advocate involved earlier in the summer when we were getting the runaround about whether the school would take her and having the district assign an aide. All it took was for the advocacy organization to submit the written request to review the file, and the district suddenly agreed to hire the aide. I talked to her this morning and she's calling back the people we talked to yesterday. She confirmed that there's no reason not to start school while the IEP is pending.

This actually goes back further than March. Susan turned 3 last November. She was evaluated by the district two months before that. Her evaluation said she should get a bunch of services, but they never wrote her an IEP. If she had an IEP, then they'd have to provide the services. They lied and told me they didn't have to do an IEP until they enrolled her full-time in a public school, and there wasn't any space available in a school. In March she was offered a space in a segregated special needs pre-K classroom, but I declined it because it was too close to the end of the school year to move her, and because she does not need to be in a special classroom. I hadn't heard about the law pertaining to Least Restrictive Environment at the time. I was told that since we turned down that spot, we had waived her right to receive any services. I offered to take her to the school just for services. They said her evaluation required services to be provided in a full-time special education setting. In other words, they lied to me to get out of providing any services or writing an IEP that would have made it easier for me to force them to provide services.

Sorry if I'm overuseing the word "services." For lurkers, it's shorthand for occupational, physical, and speech therapy.

Once this immediate matter is settled, I want to pursue getting reimbursed for what I paid out of pocket for therapy last year. I'm seriously tempted to get into a lawsuit, either on our own or in a class action, for the civil rights and IDEA violations. What they're doing is wrong, it's against the law, and it's not just my kid it's happening to.

Today, 9-11-07
The much-anticipated IEP meeting was today. It was stressful, and I'm so glad I had DH and the family advocate there. Our main point of contention are that they have no back-up for the aide, so if she is sick or otherwise misses work, the school is saying Susan won't be allowed to come to school that day. I said that for the short term DH and I are willing to come in ourselves as backups if necessary, but we won't accept Susan being excluded from school, and in the long term they need to come up with an alternate plan. The therapists did at least say that if we had to keep Susan home, we could bring her in for therapy - an option that we weren't given last year.

They tell me that it took them since March to find someone to hire to be the aide, and that she moved her from Dallas for the job. I'm doubtful that that story is entirely accurate, but I do acknowledge there is a workforce problem here. The thing is - this is a city of two hundred some-odd thousand people - how is it possible that there aren't other kids in the district that need aides? Where are they? How can there be no plan for back up care?

I suspect the answer is that the kids have all been shoved into a special ed classroom, like the one they tried to shove Susan into last year. Can you imagine a kid like Tarti's Max, who has physical challenges but is bright, being swept into a classroom where all the other kids have significant intellectual development delays? How unfair is that? How illegal is that? I suspect that all the families in that situation have given up and moved elsewhere. That might yet be what we have to do.

Shocks to the system

RE: The comment on my last post where a preemie parent tells of being thrown over the edge when she heard of a 3YO former preemie who was just learning to jump.

There are a million of those moments, aren't there?

When Susan was still in the NICU, at about 4 months old, I noticed a new mom scrubbing in, so I greeted her and asked about her child. I felt like a veteran at that point, of course, and remembered how hard the first few weeks were. The mom told me this was actually her second child to pass through that NICU. Her first had gone home after 5 months, but passed away at 18 months old.

It was like a glass of cold water on my face. The whole time Susan had been in NICU, I felt like going home was the big hurdle - once we got passed that everything would get better. It hadn't really occurred to me that we could go through everything we already had, and still lose her months or years down the line.

I knew there would be ongoing issues, but the spectre of death was one that I had put out of my mind until that conversation. From then on that spectre has been with me - whenever she has a fever or any kind of infection - reminding me that her fragile little body might not be able to fight it off. Do all parents fear, deep down, that every illness might be the one that will kill their child? Maybe. Probably?

When I'm around other families with kids around Susan's age and I see the myriad of small ways it's all just easier for them, that's another kind of shock to the system. It's a lonely feeling. That's probably why so many of us are compelled to blog and read others' blogs, to supplement for the shortage of true peers in our real lives.

Here's a recent picture of my little pixie:

Truth or Consequences?

Another good post on The Preemie Experiment today. There’s some argument about whether new mothers of preemies should be primarily reassured and given hope, or informed and given options on the course of their child’s course of treatment.

I am honestly surprised at those who would deny a realistic presentation of the risks involved with premature birth to new parents. In the weeks before and after Susan’s birth, I was obsessed with finding all of the data I could on survival rates, percentages with severe versus minor disabilities, the likelihood of a future term pregnancy after a preemie birth, etc. etc. For me, knowing the worst-case scenario, and how often that scenario occurs, gave me a degree of reassurance that hearing only the shiny-happy-miracle-baby stores could not. The unknown is always much scarier than the known. I can imagine nothing worse than being mislead into believing only good things will happen then having reality fail to live up to the promise.

Because I KNEW that most sub-1 pound babies have major disabilities, my own child’s relatively minor issues seem a lot more manageable. I know how easily we might have lost her, so I am so grateful to have her with me, and happy, that I don’t feel at all “ripped off” for not getting a healthy kid like everybody else.

This passage in TPE struck me:

Although the tone of the program [about “miracle babies” at 2 years old] was optimistic, and the parents all smiled and made positive statements about their children, you could actually see the children and their feeding tubes, cannulas, oxygen tanks, braces, etc. PT and OT were shown and described, as well as such day-to-day details of life as how to transport oxygen-dependent twins to a follow-up appointment.

This program so horrified the moms on tocolytics, that several of them asked to be taken off the drugs and discharged from the hospital to let nature take its course. They all wondered "Why didn't anyone tell us these things?"

Indeed, why didn’t anyone tell them? And more importantly, why didn’t anyone provide counseling and perspective to help them realize that feeding tubes, cannulas, oxygen tanks, etc. are NOT the end of the world or indicators of a miserable life for the whole family? There is an enormous gray area between the “miracle baby” who survives unscathed and the preemie who is catastrophically disabled for life. The majority of us live in this gray area, and (forgive me, like Holland) it’s not so bad a place.

Santa, the Tooth Fairy, and FAPE

It’s the time of year when parents in New Orleans start the mad dash for a school for our kids. At schools across the city, parents are lining up to submit forms, pay application fees, and cash in any favors owed us by a friend of a friend of the admission director at the local public charter. This morning Mr. N and I were amongst them, crowding with other parents into a pre-K classroom to observe the lucky winners of last year’s lottery as they stacked blocks and read The Very Hungry Caterpillar. This was one of four observation days at the school. Today, there were probably fifty families represented. How many spots are up for grabs? What happens to the rest of us?

I ran into a former coworker whose son is close in age to Susan, and we compared which schools we were applying to for Pre-K. They’re looking at French immersion programs; I’m leaning towards Catholic or Episcopal schools in my neighborhood. The public charter is a best-case scenario. If you win the lottery and get in for Pre-K, your kid can stay in the charter school for the remainder of his education. This could save you tens of thousands of dollars over the next decade and a half. Plus, if you have younger children, they automatically get admission to the same school. Since private schools are typically $600/month per child, getting into the public charter is literally the deciding factor in whether to stay in New Orleans or move elsewhere.

What about our legal right to a Free and Appropriate Public Education? It’s the tooth fairy. It’s Santa Claus. It’s something we all believe in, in principle at least, but know we can’t count on. There is simply nothing available. The school board’s cupboard is bare.

When you add special needs into this already sad situation, it becomes desolate. Technically, public schools can’t turn away kids for having special needs. In reality, there are only so many spaces in a given classroom. Susan had her IEP evaluation two months before she turned three. At three, the services she previously received from the state – physical, occupational, and speech therapy – were cut off, because at that point the school board is supposed to take over. Since then, the only therapy she gets has been what we can pay for out of pocket, and our pockets are running very thin right now. Health insurance doesn’t cover long-term therapy, precisely because it’s generally provided by the state.

Her IEP says Susan should be getting therapy and special education and all sorts of wonderful services that she would certainly get if we lived anywhere else. I could take up a legal fight, and try to get reimbursed for some of the cost of private school and therapy. I know that by law I’d be in the right. But setting my faith in the legal system feels like chasing the Easter Bunny to try and get what Santa didn’t give me. More importantly, there’s only so much time and energy I have to spend fighting the school board, when I still have to find (and find a way to pay for) a decent education for my daughter.

If I had to do it all again...

A new blog titled The Preemie Experiment has gotten some posters on the Preemie-L list riled up for acknowledging that 1) preemies tend to have long-term problems and 2) caring for them is hard. Oh boo - mean old bloggers making people sad by acknowledging the truth. Whatever is the world coming to?

OK, it's widely known that I'm a big old bitch, but I've always found the Preemie-L list way too "speshul" for me. Oh God, the angel babies... the emoticons... you need an insulin drip along with the DSL line.

Like the author of the aforementioned blog, I don't want to have more children. Part of me wishes that Susan could have a sibling, but I can't face another pregnancy. It is not highly likely that I would have complications again. There is, however, some increased risk of another case of pre-eclampsia, another genetic mutation, and another prematurity. When I think of how easily it all could have gone so much worse - either losing Susan or her having profound disabilities - I can't imagine facing that possibility again.

With Susan, I had no idea what I was getting into, so I had no opportunity to bail out. I was low risk, so I had no prenatal testing. If I had tested, we would probably have learned about some of the problems in time to terminate. What an awful thought, right? In all honesty, I know that it's what we most likely would have done, for the same reasons I'm avoiding future pregnancies altogether. I never want to have to make that choice.

When the shit hit the fan in my pregnancy, DH and I discussed contingency plans with my O.B. A dear friend of ours had recently lost a child, our godson, after three years of pure hell due to his massive disabilities. We didn't want to go through what they had - it cost them their jobs, home, and marriage - and most importantly we didn't want our baby to suffer. (Our godson was not a preemie. He just had a different form of plain old bad luck.)

It obviously made the O.B. uncomfortable, but we wanted it to be very clear that if she was not going to have any quality of life, we did not want heroic lifesaving measures taken. The docs quietly reassured us that if we did get to such a point, where she was suffering had had no chance of meaningful recovery, there would be no legal battle to stop aggressive treatment. These decisions are made in hospitals all the time. There's just no public notice, nobody sends out a press release. It's just a quiet understanding between doctor and patient. Our doctors emphasized that we were a long way from making that choice, and fortunately we never got there.

Susan was one of the 2% of babies born under 1 pound who did not have any brain bleeds. She didn't have any significant heart, lung, or gut problems. No ROP. She was just small, and she still is. When she was getting close to discharge from the NICU, I spent some time reading over her chart - which had grown to two thick binders full of records. On the doctor's intake notes from the night she was born, there was a brief notation that once she was stabilized, they would wait 48 hours and observe before deciding on an ongoing course of treatment. The neo never said so to me, but I know that he had the same worries as I did, and if push had come to shove he'd have been with us, whatever course we decided to take.