Nationalized Health Care, Down Syndrome, and Abortion

I’m going to go out on a limb today and say something that a good portion of my readership probably won’t like. Namely: I support Obama’s health care plan.

You might remember that last year a group of us put together a bill to mandate coverage of “habilitative” services for children with special needs. This extremely frustrating process has shifted me from a default status of “big government=bad” to support of national health care.

Consider this:

  • A child who has a stroke on the birthing table will receive whatever therapies s/he needs throughout his/her life. But a child who has a stroke in utero, even a day or two before labor begins, will be denied the same coverage.
  • Likewise, if Alex (Heaven forbid) suffered a fall and received brain damage that made it necessary for him to receive ongoing physical, occupational, or speech therapy, he’d get it. But Julianna, who already faces an uphill battle for learning anything (aside from being cute, which she gets naturally :) ), gets denied based on her diagnosis of Down’s.

As long as we were covered by First Steps, we got what we needed. It is a great program. But it only goes to age 3—and Julianna didn’t even walk until 2 ½. For 2 ½ years, we threw all our effort behind the basic gross motor skills, with OT and speech taking second place. This is the natural order of learning. But by the time she walked, we had less than six months to focus on speech therapy. Six months, when it took 2 ½ years to teach her to walk.

At 3 ½, she receives one hour a week of one-on-one speech therapy from the public schools. And although her comprehension is within twelve months of normal, she’s not even as far along as Nicholas (16 mo.) in speech production. She doesn’t know how to control her muscles. She can’t even babble the back of the mouth sounds (k, g, etc.) The only solution is speech therapy, and a lot of it. Can the school give her more? Probably. We’re certainly going to ask, come fall. But through insurance, we’re just plain old out of luck, because she has a pre-existing condition—namely, Down syndrome.

And we have good insurance. Insurance that served us well, as long as we had somebody else providing therapy.

This is the inequity—dare I say, the discrimination—that the Children’s Therapy Act seeks to address. But even knowing that grassroots-level legislation takes years to get passed, the complete and total lack of responsiveness from the political leadership was disheartening, to say the least. For weeks on end, we deluged the speaker’s office with calls to assign the bill to committee. We called senators, trying to get someone to listen to us. No response.

I contacted a former state senator, hoping for advice on who might be open to listening to us. Instead, I heard how insurance is not supposed to cover ongoing needs; insurance is supposed to be for short-term, emergency care, and we should not be putting mandates on private companies. I wanted to strangle him. Political philosophy is all well and good, but not when it holds us hostage. Because folks, there is not another good option.

A health insurance company can negotiate a rate with providers. A family can’t. It’s not because the therapists are unwilling; it’s just not allowed. That means that where an insurance company pays a fraction of the fee, families pay the whole freaking thing. Every time.

We know of people who have sold their homes to pay for therapy. People who have turned down good jobs, preferring to stay in low-paying ones, because Medicare does cover therapies. People who have gone into debt to meet their child’s needs.

How is this just?

This is why I put my support behind federal health care. Because as of 2014, it requires that insurers provide coverage equally across the board, regardless of “pre-existing condition.”

Now, I know the arguments. High taxes, socialized medicine, general governmental incompetence. I get it. I do. I’ve heard from people who lived in Canada and loathed the system, saying it was absolutely useless. But I’ve also heard from people who lived in Canada and said it was fabulous. Likewise for people in Europe, who come here and are appalled by our for-profit health care system. No system is perfect; somebody’s always going to be upset. But I truly, honestly believe that most of the backlash against “Obamacare” is about political power and fear of change.

What about abortion? Well, here’s the thing. Abortion, horrific and loathsome as it is, is not going to be legislated away. Not now, anyway. We as pro-life Christians would be far better employed changing hearts and minds than banging on a door that simply cannot be broken down right now. Through Theology of the Body, through natural family planning, through support of unwed mothers, we can change the world. Because where hearts and minds are, laws will follow.

One final thought. Parents given a diagnosis of Down syndrome during pregnancy are presented with a world where their child will be discriminated against every day. If parents can’t even trust their health insurance to help them get needed care for their child, how can we be surprised by a 90% abortion rate?

Published in: on July 27, 2010 at 7:15 am  Comments (9)  
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7 Quick Takes, vol. 69

1. Generally speaking, I am not a fan of Saturday Night Live. But as a National Anthem singer (who grits her teeth at the ludicrous versions we’re subjected to) and a liturgist (who can’t stand the fact that the national anthem has become a solo op instead of a community song), I found this performance by Maya Rudolph absolutely hilarious. Enjoy!

2. Continuing the pursuit of fame is my son Alex, who rode his bike almost a mile to the grand opening of the new fire station on Sunday. He got interviewed by a reporter and his picture is #9 in the slide show, where he’s sitting with his friends down the street. But the paper didn’t use the best material they were given. “Do you want to be a fireman when you grow up?” asked the reporter.

“Actually,” Alex said, “I want to be Batman when I grow up.” HA!

3. You know those weeks when life is busy, and yet somehow you clear your to-do list by Tuesday, and by Friday you’re six items into bonus territory? That was not this week. No, this was the week when you start with a list of ONE item and by Friday, you STILL haven’t made any progress on it.

4. I lost Monday and Tuesday to snow days (completely unjustified ones); Wednesday to an advisory committee meeting for the state early intervention program; Thursday to a THREE HOUR visit to the pulomonologist. Julianna went to exactly ONE day of school this week. Out of FOUR.

5. The other time killer this week has been work on the Children’s Therapy Act. It’s exciting to see people paying attention to us, but it is taking up a lot of time. I’m spending around an hour every day on emails and phone calls. We are scheduling a meeting with some people from the government’s insurance provider, which means we have to collect denial letters from families to justify our bill. My mother tells me this is the “vetting” process.

6. On the up side, I did get my book, Joy to the World: Advent is for Families sent to Liguori, and my editor had virtually no editorial changes for me. So I am almost finished with that assignment. Available June 2010!

7. Finally…you know how I love to chew on my children. I’ve decided that I chew on Alex for substance, Julianna for spice, and Nicholas for spun sugar.

Happy V-day, all!

Published in: on February 12, 2010 at 5:55 am  Comments (8)  
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Why a Person who HATES POLITICS is lobbying for a bill

I think it’s safe to say that most of us have no idea how the political process works.

Several months ago, I got involved with PEP-C, which you may remember is trying to pass legislation requiring insurers to cover PT, OT and speech for kids (under 18) with developmental disabilities. Early in the process, one of the experts told us that the chance of getting our legislation passed the first year was virtually nil. I had to trust the experts, but I thought, for Heavens sake, it’s July! We have six months to draft a bill and find supporters before the legislative session begins in January. How hard can it be?

Well, it’s January, and let’s just say that now I understand why these things take years.

I’ll spare you the details and skip to the important part: As of late last week, we have a bill filed on our behalf. But there are questions my mother and other representatives would like answered, and today I’m going to blog my answer to this one:

Why is this bill necessary? What’s wrong with having the therapist visit only occasionally, with the purpose of teaching the parents how to work with their children?

It’s a fair question. This is the approach taken by Parents as Teachers, and it’s also the direction in which Missouri First Steps is moving. But both those programs serve kids under the age of three. As my daughter proves, the need does not go away at age three. She can walk, but she can’t get up and down stairs, jump, dress herself, or talk.

After the age of three, the schools provide services—as far as they are relevant to a child’s educational goals. But stair climbing and jumping are not educationally relevant. Many children need more than what school districts can reasonably provide. Since therapists cannot negotiate rates with individuals, we have to pay the full rate for each and every visit—meaning that the burden on families is even higher than it is on the insurance companies for the exact same visit. Fortunately, my family lives in Boone County, which provides some assistance to families. But I can’t help thinking of the families who live in counties without such infrastructure.

Back to the idea of parents being taught to work with their children. It is definitely important for parents to be given specific tasks and strategies to practice with their children. However, that’s not the total answer. Children—typically developing or not—often resist working with their parents on any skill. For instance, my son Alex—as typical a boy as you can find anywhere—is often resistant to instructions from me or my husband on things like the proper way to hold a pencil or draw a letter. But put him in a classroom and he becomes a model of cooperation and learning. Likewise, my daughter Julianna, who has Down syndrome, will sign and sometimes vocalize words for her speech therapist (and her big brother)—but not for us. She will dress herself for her OT—but not for us.

Secondly, the technique that works one day may be completely ineffective the next. Therapists are professionals, trained to know many ways to get to the same goal. If a child resists one technique, they can try something different. But parents are not trained; we are not licensed; we are not therapists. We are parents. We need the regular input of the therapists.

Finally, a parent needs to be a parent. Perhaps if I had only one child—maybe—maybe then I could realistically spend the necessary time to beat through the stubbornness, the resistance, and the inevitable changes in development. But I have two other children who need their mother just as much as Julianna does. There is simply not enough time to give her the hour of concentrated time that is required for her to progress.

If these services were universally the responsibility of the insured, we would not be seeking this law. But insurers regularly cover these same therapies for children who have already learned to walk, talk, and dress themselves. It is only children with developmental disabilities who are denied. This is discrimination. That’s not a word I throw around lightly; I think it’s overused by people with a victim mentality. But how else can you classify it, in this case?

Published in: on January 25, 2010 at 8:54 am  Comments (7)  
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God is in the middle

It’s tempting, because it’s so easy.

We live in a culture where everything is reduced to sound bytes. A writer has one sentence to hook a reader or listener; going “in-depth” on the nightly news takes two minutes; each movie shot lasts two seconds, tops.

In a sound byte, there is no time for detail, no room for nuance. Pollsters ask us to offer our opinions: Yes or no? Democrat or Republican? For or against health care reform? “It depends” is not one of the choices. We are forced, by lack of options, to pigeonhole ourselves, when reality is that our opinion lies in the middle, and that we probably never had the information to form a proper opinion at all. Yet the resulting numbers are broadcast as inconvertible truth, shaping the universe we live in.

Once, during a heated debate, a man I know raked some of us over the coals for sitting on the fence—for taking the easy way out, trying to play both sides. Someone much more eloquent than I pointed out that those who sit in the middle are the ones caught in the crossfire. Holding the middle ground hardly constitutes “taking the easy way out.”

I live my life in the middle of two groups of people. On the one hand, I am a teacher of Natural Family Planning, which plants me among deeply conservative Catholics. On the other, I am a liturgist and writer, whose ranks run the gamut of political philosophy, but who, as a group, tend to lean to the left. Many of the people I know on both ends of the spectrum, in both the secular and the sacred political spheres, come across angry, bitter, and blind to the inconsistencies in their convictions. I want to jump in and try to moderate the rhetoric. But I’m afraid of damaging relationships, and I’m also well aware of the limitations of my own understanding. So except among my closest friends, I keep most of my opinions to myself.

But how can I make the world a better place if I don’t say what is given to me to say? I firmly believe that God—and thus truth—is in the middle on almost every issue, both in politics and in the Church. (Almost.) Our world is painted in black and white—in “red” and “blue”— and maybe it is easier to give in. To choose a pigeonhole based on one issue, maybe two, and hitch a ride on the bandwagon. But God is not a Republican. And God is not a Democrat. I reject all attempts to classify the world—political, religious, or everyday—in either/or terms. I reclaim the middle ground. And beginning today, I’m going to take the risk, and say it out loud.

Published in: on September 17, 2009 at 1:54 pm  Comments (14)  
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The Extraordinary Ordinary

Today in Washington, D.C. was an extraordinary day. Unfathomable numbers of people, braving weather that normally would keep everyone inside, stood for hours to watch the inauguration of a new President. A man who stands upon the shoulders of hundreds who came before him showed the grace and class that inspired people of differing political persuasions to choose him to lead a nation.

 

An extraordinary day. But here in Columbia, oh, so ordinary.

 

I woke up at 4:30 a.m. and couldn’t get back to sleep, so instead I got up to write. Once the kids were up and Christian was off to work, Alex and I worked a puzzle while Julianna had speech therapy.

 

I hoped to watch the inauguration—but I had promised Alex a trip to the library. And between therapies and lessons, the only time we could go was 10:30 a.m. So I spent the inauguration sitting in Story Time with my children, laughing at the antics of a baby llama crying for his mommy. When we left, Alex lost a Superman glove, and I had to get pretty severe to stop the screaming, which I read as a symptom of extreme exhaustion. When naptime came, though, Julianna went down, but Alex tossed and turned for an hour and a half.

 

I tried to nap for twenty minutes. I finished my Advent book proposal and got it sent off by email. (Submissions go a lot faster when there’s an almost-four-year-old standing beside you saying, “Mommy, hurry up! I want to play! You’re taking too long!”) We got Julianna up. Snacks. Cleaning the kitchen. Building with Lego. I taught three lessons. Alex got mad because I wouldn’t let him watch a movie until after dinner. We read about King David instead. Christian was late getting home. Julianna had another bad diaper, and screamed at me throughout Christian’s lesson, because I wouldn’t let her go downstairs with him. I spent half an hour converting Julianna outrage (which is really something to see) to unwilling giggles. (There’s filial gratitude for you. I change your horrible diaper, get you all clean, and you scream because you’d rather be with Daddy! J)

 

Then there’s bath time and bed time, and in the meantime, a blog post percolates for six hours and, between one interruption and the next, takes two more to write.

 

An ordinary day. Perhaps a little on the wrong side of “good.”

 

But then there was that moment when Julianna stood, tottering, for forty seconds, staring mesmerized at the Story Time ladies. And the fire in her eyes, so different from the placid disinterest of her early months—a fire that shows that she has a will to achieve.

 

And there was the feel of Alex’s hair under my fingertips as we sat together on the couch, and the light flashed off highlights of black and red and blond in his thick brown hair. And the amazement of seeing his elaborate Lego creation—a whole train of connected vehicles that he called a moving truck.

 

And there was the catch in my throat as I skimmed the transcript of the speech I missed hearing.

 

Somehow, somewhere in those moments, the ordinary became extraordinary.

Published in: on January 20, 2009 at 7:58 pm  Leave a Comment  

This business with bailouts

Does this bailout business scare anybody else out there?

 

First, $700 billion for Wall Street. (Or was it $750?) That number alone was staggering. Then, along come the Big Three with their jets and their $25 billion request. Then yesterday, it’s Citicorp, with another $20 billion, plus $300 billion more in assets they’re going to guarantee. No biggie. Just a few drops in the proverbial bucket.

 

I’m no economic expert. But I do believe in using common sense. What scares the heck out of me is, where is this money going to come from? You can’t spend money you don’t have! Well, obviously you can, since the country’s been living on deficits almost my entire life. But it’s as if Washington truly believes that they can continue doing this forever, without consequences.

 

The idea of recession is not pleasant, and I know that my situation is far more secure than many. Perhaps most. But we’ve already dug a hole that my children, grandchildren and great grandchildren will still be trying to fill, and that’s if we quit now. Sooner or later, there’s not going to be anything BUT hole. And what happens when it’s so big that there’s no room to live on the edge of the abyss? When the abyss swallows everything?

Published in: on November 26, 2008 at 9:34 pm  Leave a Comment  

Race, Politics, and the Presidency

It’s a time buzzing with excitement and new possibilities. There will be children in the White House again, along with a younger man who promises hope in a time of great cynicism and anxiety.

 

So please, can we stop talking about race?

 

My heart overflows with gratitude that we have passed the milestone. It should have been possible long ago; its passage must be marked. But to focus on it day in, day out, as the news media has been doing, is insulting to the man. Let him be who he is, without making his race the most important part of his unborn administration.

 

Of course there were some who voted in November on the basis of skin color. But I think the vast majority of the American public has been beyond that for a long, long time. To be sure, there is racism in America, but the kind of racism that makes people vote for or against a person based on skin color…that is a thing of the past. Let it go, and dismiss those who hang onto it, the way you dismiss those who still believe that the earth is flat, or that we didn’t land on the moon, or that the universe revolves around Earth. The best way we can honor this milestone is to judge Barack Obama by his actions in office, the same as we would any other president—without regard for his race.

Published in: on November 14, 2008 at 9:20 pm  Comments (2)  

A Picture is Worth a Thousand Words…except when it isn’t

There’s a photograph, from 9/11. I’m sure you all saw it: a man in a business suit, arms flat at his sides, plunging headfirst, skydiving with grim determination toward his death. I remember reading a commentary on that picture. The gist of it was that, like all exceptional photos, the story it tells is, in some part, a lie.

 

It’s a gruesome subject, and I only bring it up because of a photograph of Julianna that I saw last night. Now, I have countless pictures of Julianna, and almost all of them show her as she is in reality: cute, engaged, vivacious, smiling and utterly charming. Her eyes are more than half reflected light. The glint of life that resides in all our eyes seems to take up twice as much of hers. This is probably what made me shake in my shoes when she was first born, and I recognized God’s eyes in her eyes.

 

When you look at these pictures, you might or might not realize that she has Down syndrome. Those pictures are possible because it’s us behind the camera—Mommy, Daddy, Grandma, Grandpa—and she’s reacting to us, whom she knows and loves.  When she doesn’t smile—when she doesn’t engage, flirt and charm—she looks retarded. Ugh, how I hate that word.

 

Last night, we went to visit my parents. Mom, 5 days past her final election, told us about one person’s reaction to a direct mail piece she’d sent out. It was a pro-life piece featuring a still shot of Julianna and her cousin sitting on Mom’s lap. The shot was taken from the video that RHCC shot this summer for TV ads. “Cheap shot,” the person had written, drawing an arrow to Julianna.

 

It was a pretty nasty thing to imply—that Mom went looking for a retarded child to hold in a pro-life ad. Of course, that person couldn’t have known that Julianna was her granddaughter, let alone how much love she lavished on Julianna even before her parents were able to. But looking at my daughter in bright, glossy color, I could see the guy’s point. It was, without a doubt, the worst shot of Julianna that has ever been taken. She looked…well, mentally retarded. Tongue hanging way out, feet and arms dangling uselessly, eyes staring vacantly toward the ground.

 

In the video footage, it doesn’t look like that. Julianna is sitting in the bright sun—it was brutally hot and humid the day we shot that footage. She’s uncomfortable and can’t shade her eyes, so she looks at the ground, and for a moment, she sticks her tongue out. Why, oh why, of all the frames they could have chosen, did they pick that one? Oh, how I hate the political process. Some part of me has to admit that whoever chose that frame, at the printing house or from the campaign staff, probably did so because it was the single photo that made it most obvious that this was a child with a disability.

 

Which brings me back to the 9/11 businessman. When you look at the whole series of shots from which that one was taken, you see that he was not, after all, plunging with grim determination toward the earth. He was flailing, tumbling, arms and legs flying around in panic. That famous photo shows one unrepresentative moment, chosen for maximum impact.

 

A photo can’t lie. Except sometimes, it does.

Published in: on November 9, 2008 at 8:00 pm  Comments (1)  

Election Day Funnies

I’m a little late sharing these two gems, but better late than never.

 

The first comes from my sister Tamara. This was the email we got on Election night:

 

We took Noah with us to the polls first thing this morning so he
could watch us vote. I just put him to bed, and he is positively
heartbroken that McCain is losing the presidential race. He’s
weeping over it in bed. When I asked him what he liked about
John McCain, he said, “ like the way he dresses.."
Okay. . . so maybe we have  a bit more work to do.  I’m not sure
whether to laugh or cry.

 

I told her I thought it was pretty darned funny!

 

Yesterday morning we had Good Morning America on. Of course, they were talking about nothing but the election. Alex, who usually pays little to no attention to the news, was actually interested. For several weeks, I’ve been trying to explain to him the concept of elections. Since his Grandma Sander was up for re-election, I could point to her signs in Moberly and talk about where she worked, and how the people had to vote for her. I don’t really think he got it, but at any rate, yesterday morning he stood by me for a minute while I was explaining to him that the man on the screen was our new president. Then he says, “Mommy, sometime can we go to Barack Obama?”

 

Sure, Alex. Just like we can go to Bonkers or Chuck E Cheese’s. No problem, kiddo. J

Published in: on November 6, 2008 at 3:33 pm  Leave a Comment  

Chiming in Late on the Debate

I should write about politics and culture every day—my hits counter spikes every time. J

 

I have a lot to say about presidential politics right now, so I’ll give my $.02 on Tuesday’s debate, but I’ll try to keep it brief.

 

I thought both candidates made their cases well. Obama is definitely the better public speaker. McCain tended to waste time at the beginning of questions. (I have great sympathy for this weakness, being prone to it myself.) However, we elect a president based not on public speaking ability, but on ability to get the job done. Although after Bush, I admit it’s tempting.

 

Anyway. I liked what both men had to say. They both sounded reasonable on health care, though I have reservations about both plans. Likewise, foreign policy. (And I’m soooooooo delighted that they both pronounce country names properly. I’m so tired of hearing “I-Rack.”) For example: Iran. (Not I-Ran.) Obama says we should sit down and talk without trying to bully ahead of time—that conversation leads to understanding. Yes, I agree, wholeheartedly. McCain says we have to bring expectations to the table—we can’t just show up and let them push us around. Yes, I agree with that, too.

 

Their aims are the same on almost all issues. The question before us in November is not whether or not we should fix the economy. It’s a matter of whose plan will work best. The weakness in the debate format is the need to keep control. What we need is a back-and-forth: What about this? What about that? Unfortunately, that takes too long, and gray areas overcome all clarity.

 

We’ll never know ahead of time who has the best plan. No matter what anyone says, no one knows the future. Different circumstances could make one or the other right. Without that knowledge, we have to make the best educated guess we can, and go from there.

 

Right now I’m feeling pretty sanguine about America’s prospects for the next four years, regardless of whether we go “red” or “blue.” (Yet another distinction I despise. It’s a convenient way to show graphics on TV. Nothing more. Get over it!) In fact, I think Obama and McCain are so well matched that the ideal ticket would have both of them on it. J Yeah, right. (Hey, it happened in My Fellow Americans!)

 

The one thing that annoyed me Tuesday night was the plethora of digs, full of partial truths and misleading insinuations, that they tacked on to the end of every speech. Aside from being completely unhelpful to the voters, it was awkward—as if these two distinguished, articulate men slapped crepe paper on their acid-free thesis papers, complete with Elmer’s glue squishing out around the edges. Every time it happened, I groaned, “Oh, not again! Just shut up already!”

 

I have argued this point before with campaign managers and candidates. They call such tactics “contrast,” which sounds reasonable in theory, but reality is not so pretty. In politics the word “contrast” covers a multitude of mudslinging. Obama and McCain were fairly restrained in the debate, but the ads and the phone calls are not. The way campaigns are run in America—focused 90% on half-truths and mudslinging about The Other Guy (Gal)—counterbalances my earlier satisfaction with the choices this November. Apparently, politicos think we’re all too dense to recognize fallacies when we are presented with them.

 

Jeez, I hope they’re not right about us!

Published in: on October 9, 2008 at 9:42 pm  Leave a Comment  
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