Special-Needs Adults

So, how about this weather? There are so many complex factors in weather, and in climate, that you can’t predict a scorching July will follow cherry blossoms in March. That goes double for Rhode Island, where it can snow in May.

Friday, I walked to Kennedy Plaza to catch the #42 bus. They say you have to watch out when you’re downtown, and they’re right. At Burnside Park I was confronted by a Unitarian who gave me a pledge card. With my sore back I’m not up for running, so I just told her that I hope to make good on last year’s pledge by the end of this fiscal year. I’m streetwise like that.

I just watched HBO’s ‘Game Change’. In 2008 I saw Sarah Palin’s acceptance speech in real time, it’s fascinating to see it as drama. I feel a kinship with Sarah Palin. Really.

Like when the wonks are in a huddle and someone mentions that Sarah Palin speaks in tongues. That’s fact, she does. I know why. I’ve been there and done that. At Apponaug Pentecostal Church in the 70’s, everyone who was anyone spoke in tongues. Though actually I had learned tonguesspeak from the Catholic Charismatics– long story.

I know that Sarah Palin has a large and powerful base. In my prior job I worked with an office manager who looked at me innocently and said, “I really like Sarah Palin, don’t you?” I would not hurt this woman’s feelings for the world, she was the nicest person. I wondered what she was hearing that made her feel Sarah Palin would stick up for her. Sarah Palin is not stupid– in fact she is brilliant at connecting with the pain of some Americans who feel ignored and disparaged, and making them believe that she is on their side– without actually committing to take any material action on their behalf.

In the film, a woman holding a Down Syndrome child looks worshipfully at Palin, saying that finally someone speaks for her. This is a part of America that cannot be dismissed, and to make snap judgements or condescend is not only wrong, it’s stupid.

Parents and families of special-needs children are fortunate if, like the Palin family, they are wealthy. Most are not. Where it really matters is not at the political rally, but in the allocation of resources. Tax cuts for the rich at the expense of families who depend on such services as RIDE and SNAP are dry, depressing, uninspiring realities. Jesus said that when you give, don’t let the right hand know what the left hand is doing. The Republican Party seems to have applied this to taking– talking about the children while cutting aid to the families who care for them.

Special-needs children, gods willing, grow up. Their needs change, sometimes increase. Parents grow old, money runs out. We can take care of our own, if ‘we’ includes all of us. We can provide not only material care, but inclusion.

I once worked in a building that was considered rather tough. At one time the VNA would not go into it without an escort. More than one mother with a special-needs child lived there, including the aging mother of a woman I’ll call ‘Tonie’.

Tonie was sweet-natured, energetic, outgoing and childlike. She hugged everyone. Her mental handicap was not apparent unless you talked with her. Wariness did not seem to be part of her nature. She was slim, boyish and nice looking. Her mother protected her always, until she had a heart attack.

While her mother was in the hospital, Tonie had to spend a long weekend on her own. We all worried. Did she know how to cook without setting her apartment on fire? Would she know to stay away from some of the known predatory people, inside and outside her building?

Tonie had more strength, I think, than we gave her credit for. She did okay, and I see her from time to time. She was not the only vulnerable person in that building who seemed to be protected by an unspoken code of honor. There were some tiny elderly ladies and gentlemen who lived there as long as age allowed. There were people whose illness caused them to be unpleasant and provocative, who were understood as impaired and left alone.

This rambling post is just to mention something that is obvious but often overlooked. Margaret Thatcher supposedly said that there’s no such thing as society– only individuals. We do not, however, live entirely in a world of strife and competition. We want someone to speak for special-needs children. Less often does anyone speak for their needs when they become adults.

We can take care of our own– all Americans. We are a great and wealthy nation. Special-needs children, like all children, are a lifetime commitment and beyond. They grow up, parents age, families reach the limit of their resources. That’s where community, and government aided by good laws, share the responsibility.

We are now at a point where we will decide whether the life-saving resource of medical care will be a public good, or a private privilege.

The future of Mary Beck, Trig Palin, Bella Santorum and all the children of ordinary citizens will be profoundly affected by what we decide.

Ron Paul’s Answer–Unlicensed Doctors for Uninsured Patients


Neuroscience the Old Fashioned Way

AmericaBlog has video and a transcript of Rep. Ron Paul during the Republican presidential debates, as he answers Wolf Blitzer’s hypothetical question about a 30 year old man who opted out of health insurance and now lies in a coma with a dire but treatable disease. Should we save him?

Paul >> That’s what freedom is all about, taking your own risks. This whole idea that you have to prepare and take care of everybody —

Audience >> [applause]

Blitzer >> but congressman, are you saying that society should just let him die?

Audience >> [shouts of “yeah!”]

Even Paul’s rival, Gov.Rick Perry, was ‘taken aback’ by the ugly mood of the crowd.

This may sound like ‘nut picking’– taking the most extreme statements out of context, but I will swear on a stack of collected Ralph Waldo Emerson that I heard the same kind of things said, shouted, and offered to me as argument at the health reform Town Halls here in Rhode Island.

[Here was a snarky example of a group of firefighters who let a house burn for lack of fees. Xavier Onassis, EMT-P, took issue with the story as reported by USA Today. He says the story was mis-represented in the press, and that dedicated volunteer firefighters had been working unfunded and without adequate support. He has an informed comment here with a link to a more complete story. I apologize here for giving legs to a story that reflected badly on people whose mission is to save lives.]

Rep. Paul did go on to say that no one would be left to die in his hospital, and he invoked the old-fashioned neighborly spirit where churches and benevolent groups would come together to save the guy in the coma (more on that following). Then he said something that the blogosphere has not picked up, though it’s one of Paul’s most radical statements yet…

We have lack of competition. There’s no competition in medicine. Everybody is protected by licensing. We should legalize alternative health care. Allow people to practice what they want.

“Everybody is protected by licensing.” This is a problem? Not de-regulated enough? “Legalize alternative health care.” What is he talking about? Alternative health care is thriving, and often reimbursable by medical insurance. But do we really want to just guess, when picking a doctor, whether they passed their boards, and whether their medical school was accredited? Ron Paul’s son, Rand Paul, is not board-certified by the American Board of Ophthalmology, but rather by an association that he founded and directs. That’s one way to do it. Do we crave the freedom to take our own risks with loosely-regulated doctors who can create their own credentials? Do we want an old-time doctor like R.V.Pierce?

R.V.Pierce,MD, was a good businessman. His hospital covered an entire city block in Buffalo, New York at the turn of the last century. He peddled a pre-FDA concoction called the ‘Golden Medical Discovery’. It made people feel better, allegedly because it was fortified with alcohol and opium. Dr.Pierce’s book, ‘The People’s CommonSense Medical Advisor’ contains scores of testimonials to miracle cures effected by just a few bottles. To the skeptical nurse, these stories are a window into the suffering endured by our great-grandparents, whose lives might be ruined by accidents or conditions now easily treated. Interestingly, R.V.Pierce served in Congress on the Republican ticket.

Back to Rep. Paul’s recommendation that we look to churches and neighborhood yard sales to care for our neighbors in need– check out Providence Journal reporter, Felice Freyer’s article ‘The Price of Miracles’. Neighbors do help, but the care of a baby in intensive care costs thousands of dollars a day, and then thousands of dollars a month after they go home. This is where collective responsibility comes in, and where we uphold our values as a great nation.

Back to Wolf Blitzer’s hypothetical. The life of a 30-year-old man has value. More than $800,000 according to one calculation. And the community that decided a cloud of air pollution and a smoking ruin was better than an intact house– well, just a little shortsighted. At least the firefighters woke up when they saw the neighboring roofs catching sparks.

And if you’re old enough to shudder at the mention of the drug, Thalidomide, then thank Frances Kelsey. As a pharmacologist at the FDA she kept that drug from being widely prescribed in the US. Regulation is good in its place, and what you don’t know can hurt you. Ron Paul’s nostalgia for unlicensed doctors for uninsured patients is not shared by most Americans. Most Americans want some assurance that there are standards, and recourse if they are not treated right.

The suggestion that we would all be better off if it were not for those tiresome standards and licensing requirements is easily refuted if we look back a few generations– and see why these standards were put in place.

The statement that we should just let uninsured people die if charity doesn’t intervene won’t seem so smart when it’s someone you know or care about whose life is in danger. And that would happen sooner rather than later if we lived in Ron Paul’s America.

We are not yet a nation that demands a credit card number before responding to 911, but yes, people are dying for lack of affordable care. It’s years of health and life lost to preventable disease and is a national heartbreak and disgrace.

I actually share Rep.Paul’s frustration with the current system– overtreating here, undertreating there, pill-pushing and flawed. But I wouldn’t throw it away in favor of a Wild West where sick people have no protection from quacks, where we pride ourselves on being strong enough to deny care to people who made ‘bad choices’ not to buy insurance. Especially as uninsured people are often young adults, and often can’t afford insurance.

Like many middle-class parents of young adults, I am benefiting from the health care reform that allows family insurance up to age 26. I want to see this as a beginning of more comprehensive reform that covers everyone. You may say I’m idealistic, but universal health care is more reality-based than a nostalgic vision of an America that never was.

MORE: Mark Karlin on Buzzflash says that a campaign manager for Ron Paul died young, uninsured and in debt. Would it be in accordance with Libertarian principles to provide health insurance for employees? The Huffington Post also has a comment on this sad story. Pneumonia can be fatal, but it is a disease that has a high rate of recovery if treated early. When people hesitate to go to the doctor for lack of insurance there are some whose luck runs out– this especially applies to the young and healthy.

Taste of His Own Medicine

Go to Politico for the whole story, here’s a sample…

A conservative Maryland physician elected to Congress on an anti-Obamacare platform surprised fellow freshmen at a Monday orientation session by demanding to know why his government-subsidized health care plan takes a month to kick in.
Republican Andy Harris, an anesthesiologist who defeated freshman Democrat Frank Kratovil on Maryland’s Eastern Shore, reacted incredulously when informed that federal law mandated that his government-subsidized health care policy would take effect on Feb. 1 – 28 days after his Jan. 3rd swearing-in.
“He stood up and asked the two ladies who were answering questions why it had to take so long, what he would do without 28 days of health care,” said a congressional staffer who saw the exchange.

It saddens me that a physician would not have any interest in helping Americans who lack health insurance, but Dr.Harris is not the first or the only. Bill Frist is a surgeon. You’ll note that a surgeon and an anesthesiologist would not have to deal very much with patients who are conscious. An opthamologist, such as Dr.Rand Paul, would normally have Medicare patients as a base. So Dr.Harris discovering for the first time that the prospect of being uninsured is scary– well, that’s how the other half lives. But this is what really caught my attention…

Harris, a Maryland state senator who works at Johns Hopkins in Baltimore and several hospitals on the Eastern Shore, also told the audience, “This is the only employer I’ve ever worked for where you don’t get coverage the first day you are employed,” his spokeswoman Anna Nix told POLITICO.

Welcome to my world, Dr.Harris. All of you who ever started a new job and waited three months and were glad to get insurance at all– raise your hands.

Talking Points Memo cites a large national study that backs up what we see everyday…

Most workers in this country have to wait weeks between their first day on the job and the day their health insurance kicks in. Sometimes more.
According to the 2010 Kaiser Family Foundation annual survey of employer-provided health benefits, most workers would be lucky to start a new job in Harris’ shoes.
“Seventy-four percent of covered workers face a waiting period before coverage is available. Covered workers in the Northeast are less likely (64%) than workers in other regions to face a waiting period.” the report reads. “The average waiting period among covered workers who face a waiting period is 2.2 months…. Thirty-one percent of covered workers face a waiting period of 3 months or more.”

Dr. Harris would have known this if he had ever grabbed a cup of cofffee in the break room and listened to the nurses, aides and housekeepers talk. Some of the Americans who are postponing care and hoping to get through those three months without a crisis are the same ones who provide care to others. I’ve seen it, and still see it.

Dr. Harris’ spokeswoman said that he was just pointing out the flaws in government health care. Right. It’s not fast enough and there are gaps in care that leave people uninsured. I hope he’ll work to reform that. I will.

Bishop Tobin is Scandalized

By health care reform. I don’t know what to say. I once had a co-worker who, when I asked her about Catholic things that didn’t make sense to me said, ‘It’s a mystery.’

So the Bishop’s sense of scandal is beyond my understanding, especially since anyone who spends any time at all talking to the good workers at St.Joseph Hospital knows that people are desperate for access to health care. Does Bishop Tobin drop by there often?

Anyway, ProJo.com has coverage here.

Bishop’s Revenge on Nuns

This is the present state of health care— this is why we needed reform…

Arizona has become the first state to cancel its State Children’s Health Insurance Program, which, like other SCHIP programs, is funded jointly by the state and the federal government.

The budget passed by the legislature and signed into law by Republican governor Janice K. Brewer eliminates the $22.9-million program, known as KidsCare, as of June 15th. The program served 38,000 children living in families with incomes between 100% and 200% of the federal poverty level ($22,000 to $44,000 for a family of four).

This is the reality that Catholic nuns are well aware of, since so many of them spend their days patching holes in the social safety net with their unpaid or underpaid highly skilled labor. This, no doubt, is the reason that American nuns gave crucial last-minute support to health care reform. And the nuns are being made to pay…

Bishop Lawrence Brandt of the Catholic Diocese of Greensburg has declared that religious sisters from communities whose leaders endorsed the final version of the national health care reform bill can no longer promote their recruitment events in his parishes or in the diocesan newspaper.

The nuns are claiming what sounds like equal rights of conscience…

“Based on our prayerful discernment and careful research with other Catholic-based groups and agencies advocating for comprehensive health care reform, we believe that the bill indicated that there will be no public funding for abortions and that it would not violate doctrinal and moral teachings of the Church,” said Sister Mary Pellegrino, moderator of the leadership team of the Sisters of St. Joseph of Baden. With the Sisters of Charity of Seton Hill in Greensburg, hers is one of two local communities whose leaders signed a March 17 statement drafted by the Catholic social justice lobby Network.

Full article here.

The Bishop is blocking parish events where the nuns would educate children about the religious life– a vital recruitment effort if orders are to survive the aging of their sisters.

It looks like an unequal contest, since Bishops have much more authority in the Catholic Church than nuns, but Bishop Brandt’s spiteful and impotent gesture might backfire. If I were an idealistic young woman considering the religious life, the Bishop’s ban would make me really curious about what happens when women speak truth to power.

If, on the other hand, I was the rebellious type who tucks up her uniform skirt so it’s above the knee, being banned would make the nuns look cool. It isn’t easy to do that, but keeping them away from youth bestows the lure of the forbidden.

Anyway, shouldn’t the bishops be repenting?


I’m driving around making nursing visits, listening to the health care news on the radio. It hurts to have my hopes raised again. This whole debate has been painful and deeply disillusioning. Not only with my politicians, but with my fellow Rhode Islanders who told me face to face that an America where some people just have to die needlessly for lack of health care is acceptable to them.

I have to tune most of it out right now. I’m trying to do my job and tolerate the time I have to waste on getting over obstacles created by a fragmented and irrational system. I want to see a system that delivers care to people who need it, at a cost that is fair and proportionate to their ability to pay.

I have friends who are in financial crisis trying to afford their insurance premiums. I have friends who go without. I see waste and profiteering on the other end. I see a lot of people who are sick and unhappy. I see health care workers burnt out and stressed out because our system doesn’t reward promoting health. Not yet. But I have to hope. We are a great country and we are not done with this reform yet.

I was driving home from work this week and saw a woman fallen on the sidewalk. I pulled over at the next street, and by the time I got to her three other people had stopped to help. There was a conservatively dressed older couple and a young man with a Spanish accent and face piercings. All offering to call 911. She turned out to be okay. I think that is the real American spirit. We are ready to help. We are better than the loudest voices saying, ‘no we can’t’.

Beware Scams

A warning about fake health insurance scams. But no advice on what to do about the lack of affordable health care for millions of Americans.

Scams like this wouldn’t even exist if we had an organized single-payer national health care program. The only vultures picking on Medicare are the ones who offer ‘insurance’ at pennies a month. They’re bad, but not as dangerous as the predators looking for working people who have no options.