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Friday, September 4, 2009

A.L.

A.L. is coming home today. Her mother and father love her dearly, passionately, but have been dreading this moment. A.L. is a special needs child, who is no longer a child.

We live in a world of bureaucratic double talk. We are papered to the point of exhaustion. We can study and live an issue, try to comprehend every nuance and still feel helpless to stop the onslaught. So it is for the parent of a special needs child who is no longer a child.

A.L. turned 21 this past December. For the past 3 years she has resided in a facility where she was treated with dignity and compassion. Her surroundings were breathtaking. For parents who suffer each and every day while coping with their child's enormous range of problems, it was a gift. Their child would not be getting better. Her life was never going to be easy. But, maybe, it just wouldn't be so hard.

The facility in which A.L. resided is outside the state of New Jersey, her home state. Thus, while all would agree that the care given is the best that A.L. and her parents could hope for, a different government agency is in charge of paying for A.L's treatments as an adult. Their requirements mandate that the monies have to be paid to a New Jersey facility. The costs related to A.L's care are extraordinary. With control of the dollars, comes control of the life. Whether this means a diminished existence for A.L. is of secondary concern.

We all complain each and every day about the complexity and complications that envelop us. Tell me something I can understand, that makes sense. For the parents of A.L. the world stopped making sense a long time ago.

These are people whom I have not once heard ask why they must wake up each morning to the reality of 2 special needs children, A.L, and her 18 year old autistic sibling. While their situation takes your breath away, they have always continued to breathe. I am forever amazed.

They heard yesterday from the Supreme Court of New Jersey, turning down their request to keep A.L at her present location, until a reasonably suitable alternative in New Jersey could be found. They were not asking for everything, just a little more than the very little they were being offered.

We went over to their house last night, to offer some consolation, or at least some advise. A.L.'s parents were better than I expected. Maybe it is that they have learned to live in a world of diminished expectations. Maybe they are still in shock from the events that swirl around them.

A.L. is coming home today. She is a sweet, pretty young adult. We welcome her with open arms and with broad smiles. But really, we wish the system permitted us the luxury of visiting her at the home she has grown to love over the past 3 years. We will smile, but behind the smile will be tears, disappointment and anger.

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16 comments:

Anonymous said...

Was this written by the same guy who advocates the government run our healthcare system?

Robert said...

Dear Robert,
If you reply to "anonymous",please ask him/her what are the chances that private insurance would have provided A.L. the same level of excellent care and for that length of time. Remind him that 'GOVERNMENT is still willing to provide care but in a NJ facility.
And when that person reaches the age of 65, he /she
will say, as we do, THANK GOD FOR MEDICARE--a government run health care system!
Keep up the good work.

Robert said...

Would my anonymous critic suggest that the health care system not need to be reformed? Why did Reagan and Bush seek its overhaul?

Does he/she not believe that the health care industry is weighted down with red tape, unnecessary and often bizarre charges, defensive medicine that adds only bloat, insurance companies that seek in the first instance to deny coverage to the sick and only want the well to do and healthy on their books? Is the present system not an unsustainable drain on the economy? Why are more than half the bankruptcies in this country related to unpaid medical bills? Why are 47 million Americans uninsured? Is this the best we can do? Give me a break, and show some common sense and some compassion for those who are struggling.

My young friend, and her family, deserve what all of us do, the best possible world to live in. That is what this piece is about, and that is what both you and I should strive to give them.

Anonymous said...

Anonymous Reply:
No doubt the healthcare system needs reform. That's a given, we all know that.
The reform being put forth in HR3200, guided by Obama's top medical advisor bio-ethicist Dr. Ezekiel Emanuel, brother of Rahm, advocates that society should provide the greatest healthcare resources to the most productive members of society, those between the ages of 15 and 40, and the least to the most unproductive members of society, meaning the elderly, infants, and those with chronic debilitating disorders that require expensive care. Zeke Emanuel has espoused these views since the 1990's and anyone can access his JAMA articles on the internet. Is this the kind of healthcare reform we want? With someone playing God and telling us our aged parents and new-born infants should be denied adequate healthcare because it's too costly? Most of the healthcare dollars spent in the U.S. are in the first and last year of life, and that's where they want to cut costs. Is this what you want for the A.L.'s of the future?
What the private insurance co.'s deny today, the government run healthcare system will deny tomorrow, except on a much greater scale.
As a parent with a child who suffers with a chronic, life threatening disease I have the greatest compassion for anyone struggling with similar issues. I am also very well informed regarding these issues having spent nearly 30 years in the medical industry. I and my spouse would never trust the government in any way to deal with the issues regarding my child's welfare. They can't even run a Railroad or the Post Office. Why would we want them making life and death decisions about our child?
PLEASE, GIVE US A BREAK!

Jack said...

I have to weigh in on this because I have read much of what Zeke Emanuel has written and you wanna talk about crazies, this is the poster child for crazies. As you know, having a child with Crohn's as I do, who just had a complete collectomy and needs to wear an ostomy bag, I can relate to what your anonymous responder says. The last thing I need is government interference with Michael's healthcare issues. I too, sad to say, have little to no faith, trust, or confidence in government. As my British friend's often remark they "couldn't organize a pis up in a brewery."

Robert said...

So do I understand the position to be that private industry has done a good job with the health care?

We all know that the system is in shambles.Despite the earlier comment to the contrary, the government has not suggested that it turn the health industry into a single payer system, like we have with medicaid, where costs are seemingly better controlled. They have talked only of having an alternative plan through the government. Why is there such fear of competitive bidding?

If those of us with children with chronic issues are well off enough to have insurance, and so do not face financial destitution because of an inability to pay the medical bills,we count ourselves as lucky. But we all have gone into situations where coverage has been denied for no legitimate reason and where months of effort is needed to try to undo a wrong. The bills we have been presented with are often staggering and totally out of touch with reality.

The not so subtle message being conveyed in these comments to me is that the government is out to diminish health care opportunities for all. They cannot be trusted. There has been an assertion that the young and the old will suffer.

We will never agree on this issue, or on many other issues where the level of distrust permeates all thought. In the opposition's view,every proposal made is, at it's core, too flawed for serious discussion.

Tell me the things you LIKE about the proposals being made, as there must be components that you find positive. It can't be all bad in your view. Or can it?

Anonymous said...

Okay, so I must be a little older than anonymous and the others. I am in a government run health care system, called Medicare. This system works!! At a much cheaper administration fee [5%]than any private plan {17%]. I have never been denied service, and my doctors have given me only the best care possible. As a pharmacist, I have dealt with plans that have denied coverage and limited coverage. This was all about the dollar.
Talk about limited coverage for A.L. I sincerely doubt that she would be denied coverage. This is just right wing nuts spouted off. I am sure that there will be a mechanism for appeals, both administratively as well as political Let's keep our eyes on the the majority of patients, over 40 million and growing, who do not have coverage.
No plan can be perfect, but this plan is not mandated. One can keep their private coverage, if they want. I remember when the Senator from Missouri, asked at a town hall meeting, how many people had Medicare,[about 40%] and then, asked how many of them would want to give it up. NONE. This program works. It is the insurance companies that are worried about their own pockets, not the public good.

Jack said...

It makes no difference to me whether we ever agree or not on this issue.
You certainly are not well informed on this issue, you have not read what President Obama's chief medical advisor, Dr. Zeke Emanuel, stands for because you only want to listen to what you find comfortable with your agenda. If you had read him and thought I had it wrong you would challenge me. But you don't respond to things you do not care to think about. You clearly are not familiar with what is in HR 3200, because if you were informed you would discern that those of us who have private insurance through our employer would be at jeopardy because they would have difficulty competing with the public option.
On the contrary, the level of distrust is well founded and has no bearing on a well thought out opposition to government run healthcare.
Bottom line, Robert for me, is the sanctiity of life. EVERYONE'S, young, old and in between. After you open your mind and read what Dr. Emanuel and his cohorts in the House represent come around and talk to me. I don't want to go down the road they're proposing, nor do most Americans. It's a very slippery slope. Before you know it they'll be proposing that the obese and smokers should have rationed healthcare. Afterall, they screwed up, and why should we have the burden of their health costs? I have friends with parents in their 90's who have had very expensive cancer treatments and surgeries to keep them alive. My friends are very happy their parents are still with them. If it's up to Dr. Emanuel they'd be dead. Going down that road opens the door to huge abuses of power.
Healthcare needs to be reformed in a sane, sensible, rational and fair way. When someone comes along with those kinds of proposals, I and most Americans will embrace it.
I don't want to live in Nancy Pelosi's idea of what America should be. Her approval rating is about 25%, and hopefully she'll be voted out of office in a year from now, along with Waxman and Reid, hopefully to be replaced by those who are lot more rational.

Jack said...

Robert, I apologize for belaboring the issue, but I forgot to ask you just one other question. Would you kindly give me a direct and straight answer: Why is it that the 535 members of the Congress have decided to exempt themselves from this wonderful plan they propose to impose on us?

Nancy said...

Everyone responding to Robert's A.L. blog have climbed on their own soapboxes. This is not about our healthcare system. This piece was about my daughter Annie who was enjoying her life in a beautiful home-like environment upstate N.Y. because her NJ school district felt it was the most appropriate facility to educate, encourage socialization and manage her medical needs. Now that she's turned 21, her school district is no longer responsible for her. She's now N.J.'s responsibility and they can only offer her an institutional setting that the U.S. Supreme Court ruled should be emptied because they don't provide a " least restrictive environment" in which a person with a disability can live. The real issue here is that our neighboring states have figure out how to allow people with developmental disabilities to live in their communities with dignity while NJ is still stuck in a hide 'em away institutional model.

Does anyone care to comment about that?

Anonymous said...

Nancy, I am the parent of the child with a chronic, life threatening disease who repsonded before so I really do feel for you and your family and have a little understanding of your headache, heartache, and frustration. But it does have to do with government control, doesn't it, except it's NJ government not Federal.
If you moved across the border into NY (perhaps an inconvenience but its not so far from NJ) could your daughter then receive the care she had before?

Shelley said...

http://www.dailykos.com/storyonly/2009/9/5/777696/-Has-Obama-Accomplished-Anything

I suggest reading this post for a bit of a reality check on the Obama Presidency which I will point out is 9 months old..

Jack said...

My God, how I love this. Thank you Shelley, intelligent debate is good regardless of the position. I respect your input even though I may disagree with some of it. You are well informed.
Robert, why can't you answer my very simple question?

Shelley said...

"if you were informed you would discern that those of us who have private insurance through our employer would be at jeopardy because they would have difficulty competing with the public option."

The Health Insurance Industry exists to make a profit. Basically 30% of monies collected go to administration and not delivering medical care. I have many relatives in France..the single payer system there is great..my father in law is poor and has had a serious heart attack and has paid absolutely nothing for his intensive care and rehabilitation. I see the public option as the best solution to break the backs of the insurance industry. I suggest you read the article in the current Atlantic Monthly about reform. It does not necessarily agree about the single payer system but it does address the need for the public option as a way to begin, I say agin begin, to reform the system. There are lots and lots of problems with the adhoc hodgepodge system that exists now. And what if you lose your job?? or your employer says no more health care benefits? what will you do then?? wait for medicare??

"
On the contrary, the level of distrust is well founded and has no bearing on a well thought out opposition to government run healthcare.
Bottom line, Robert for me, is the sanctiity of life."

Well many many people have died with health insurance because their insurance company refused to pay for their care, so what are you talking about exactly??

"EVERYONE'S, young, old and in between. After you open your mind and read what Dr. Emanuel and his cohorts in the House represent come around and talk to me. I don't want to go down the road they're proposing, nor do most Americans. It's a very slippery slope. Before you know it they'll be proposing that the obese and smokers should have rationed healthcare. Afterall, they screwed up, and why should we have the burden of their health costs?"

People do have to start to take some personal responsbility. What do you suggest we do with people who are trying to kill themselves through food and smoke??
They are asking society to help them with their addiction and in fact pay to foster their addiction. Why should we do that??


" I have friends with parents in their 90's who have had very expensive cancer treatments and surgeries to keep them alive. My friends are very happy their parents are still with them. If it's up to Dr. Emanuel they'd be dead. Going down that road opens the door to huge abuses of power."

What is the basis for your claim?? And who paid for the cancer treatment??Medicare alone? or was it Medicare and Private Insurance?? Are you saying the government was not involved at all?? And what if they could not afford the expensive care? There are already abuses of power from the Health Industry..


"Healthcare needs to be reformed in a sane, sensible, rational and fair way. When someone comes along with those kinds of proposals, I and most Americans will embrace it."

Are you looking for Daddy or Mommy or God?? There is no "someone" out there. We are all in this and those of use who are intelligent, cogent and caring can help to define the way.

I would say you need to be better informed and think about this reform as a beginning to a complete and necessary overhaul of the current idiotic system.

Shelley said...

Here's the link to the article Jack..
"How American Health Care Killed my Father"
by David Goldhill
http://www.theatlantic.com/doc/200909/health-care

Robert said...

we certainly have a lively discussion going on, thanks to Jack, Shelley, Nancy, Dave and Dr. Anonymous. While we started off with Annie and her dilemma, we have ventured squarely into the maelstrom about health care reform.

much like the time before the election, there are heightened emotions that fuel the conversation. If we step back and look at the comments, we can see how personal and subjective the course of the discussion

we await the President's speech on the health care issue on Wednesday. The Republican response to a yet existent communication has already been formed. we have drawn battle lines and staked out our territories. the comments on this post mirror the reality of what is happening in the world around us