Sunday, January 07, 2007

The Ashley Treatment Part II: You Could Be Next

If I thought I was disturbed over the Ashley Treatment when I wrote this post, I am even more disturbed now. What started as parents who claimed they did this to their daughter to improve her quality of life and not to make it easier for them to lift her, has turned into a national debate with people beginning to shift their thinking from, “Wow, who could do this?” to, “Yes, how can people lift someone that weight?” to, “I can understand how that’s a good solution to that problem.”

People have totally missed the point. The problem is that we don’t have enough services available and help to care for our children at home. That is the real issue behind this whole mess.

Furthermore, people have now had a day or so to think about this and seem to believe that it’s a viable option for caring with severely disabled children as they get older. What? I thought the real issue was about Ashley’s quality of life? Now, it’s about an alternative to lifting her. That seems to be a real concern from a lot of the blogs and forums that I have read. Many of the comments go something like this, “Yes, I know so and so they they are worried they won’t be able to lift her” or on a medical student’s blog, “I have a patient and her mother is worried about how she is going to lift her child”. Yes, it is difficult to lift these children but don’t we have better answers?

The segment of the population that I am not hearing much from are the physiatrists and physical therapists. Why aren’t they speaking out about alternatives to the lifting? And where are the federal lawmakers on this? Are they increasing funds for home based services fast enough to be of real assistance to these families? Is anyone mandating that we provide licensed daycare centers to help care for severely disabled children to take some of the burden off the parents? And what about the health insurance plans? Many have eliminated services such as private duty nursing which would help us parents get some sleep or help us with caretaking such as giving them a bath. And why are we decreasing physical, occupational and speech therapy visits under most health plans? And what about the Respite programs? Are we increasing funding there and do we have any training programs in place so we can find good, safe and trained workers? And what about Durable Medical Equipment limits? Our plan limits this to $2,000 per year. Dear Son’s wheelchair was almost $10,000 and I don’t have estimates yet for our hydrolic bath lift or the hospital bed. Where should we go? What should we do?

The only insurance that offers to pay for many of these items is Medicaid. Yes, many states have health insurance plans for special needs that cover items where the primary insurance leaves off (they do this for low income) however many of these plans don’t cover private duty nursing and don’t pay for diapers. If you can work full time this may not be an issue but without any daycare or resources, your options become limited real fast. Could you continue to work your full time job without any daycare or Respite workers available to care for your children? In most cases, the answer is no. And what if everyone didn't have daycare for their children? There would be a national outrage. But it's o.k. for us not to have this for the most severely affected children.

We need assistance to keep these children at home. I did some research a few years back and asked some questions and the estimate that I received was that it cost the state $30,000 a month to care for a child in a state home. Any of the programs that would be instituted to keep our children at home would be cheaper than that. We can’t allow people to think that stunting a child’s growth is an acceptable alternative to these problems.

The issues that we have with severely disabled children aren’t all that much different from the issues of the elderly who end up in nursing homes, unable to care for themselves. There are issues with lifting them, they need their diapers changed, their mental functioning is deteriorating and they can’t function independently. This being the case, I think we are opening a Pandora’s box here. If we begin to think these alternatives are acceptable for our severely disabled children, then I suppose it won’t be long before it’s an acceptable alternative for our elderly parents or even us? Just remember, we will all get old someday and there are a lot of illnesses that involve mental deterioration to the point where the elderly are acting like children. Will the new rules be when dementia sets in, you lose your basic rights? Or will it just be o.k because you are too far gone to know?

I think we need to get back to the real issue pretty fast. The real issue is we need better services and resources to care for our severely disabled children and those same resources need to be available for adults.

And finally, the "Ashley Treatment" is never o.k. Early on, I had a little test that I used to do when I was faced with a difficult decision with Dear Son. The test was this: if I could look him in the eye and tell him why I made the choice, and I felt good about it, then it was always the right decision. People are quick to think these kids don't get it, because their physical and mental abilities are so severe. They get it all right. Just look them in the eye.

P.S. You can read more about Dear Son here and here.
*As a reminder, don’t forget to vote for me at the 2006 Medical Weblog Awards under “Best Patient Blog”. You can vote here. Just click on, “Dream Mom” and hit the “vote” button. Polls are open from January 3, 2007 through January 14th. Thank you.

23 comments:

Mete said...

Dream Mom- It's clear I must respectfully agree to disagree with you. But I feel I must say that, in some ways, you are also missing the point. As you mention, so many are focusing on a single element of the parents' motivation: the ability to lift Ashley. However, this seems to be your primary argument as to why it's wrong. It's easy to criminalize them in this way. They are selfish parents thinking only of their own needs. But by focusing on that one item, I think you're missing the majority of their reasoning.

I believe if you read their original explanation, they clearly explain that making it easier for them to lift her is very small part of why they did this. They primarily did it to relieve ASHLEY'S physical discomforts; to help limit bedsores, pneumonia, and other physical discomforts of womanhood (which can be many, especially to a child who cannot comprehend nor appreciate them.)

Also, I've heard the comparison of Ashley, a pre-pubescent child, to an elderly already fully grown adult, and it makes absolutely no sense to me. The "slipperly slope" people keep talking about reminds me a lot of those who say if we let gay people marry, next we'll all be marrying animals. Yes, there will always be those who take things too far, but I think the majority of us are intelligent human beings who can understand the large difference between those two scenarios.

It saddens me that you are bold enough to make a statement such as: "finally, the 'Ashley Treatment" is never o.k.". As a parent of a special needs child, you of all people should know how individual and unique this fight is. Obviously you have an opinion on how you would handle your own son, but I would think you could respect the fact that these parents know their own child, and working with a team of doctors, decided on a course of treatment that they all deemed safe and beneficial. I don't think it's up to any of us to stand here and point fingers.

Also, while I'm glad that your son "gets it" as you explain, please do not condescend to those of us who believe our children do not. I love my son, and I know I am doing the best for him. But I have looked into his eyes, and the only thing I see there is a reflection back of my love. He is every bit deserving of love and affection as any other child, but I truly believe that he doesn't "get it". Please don't speak as though I'm not looking hard enough for his spirit. Just because it isn't your reality doesn't mean other parents don't live and accept that every day.

Anonymous said...

I still do not know anyone who would choose for a job to change a full grown man or woman's diaper. Someone may do it briefly until something better comes up. This is the crux, the constant diaper changing, and looking at mature genitals when changing diapers is rather upsetting- no one wants to do it. Changing a baby's diaper is not a chore in comparison, many people do not mind that job. If society did a better job helping these parents, does that mean they pay qualified people to come and change adult diapers? Where do these workers come from?

The reason we are all so disturbed is that it is sad when our disabled children go through puberty- it is heartbreaking when you can't life them anymore and they get bedsores and have large testicles and hairy asses. The whole this is sad. If there was some magical way to stop that from happening, that could make the person's life better. But anyway you look at it, Ashley's life is pitiful with or without the treatment. That is why everyone is freaking out. It's so sad.

Anonymous said...

I've read this blog and I've read Ashley's parents website.

From what I see, you are all deeply loving parents who have come to very different conclusions.

Kathleen

Dream Mom said...

Mete, I understand that you disagree with me however I am not focusing on just this one aspect of this treatment. My point on this post, and I think it was stated clearly, was that a lot of what I read today seemed to be surrounding this particular point. I did read original explanation however I disagree with their decision. I don't expect everyone to agree with me however because I don't share the same opinion doesn't mean I didn't understand it or didn't read it. I simply don't think it's right.

There are a lot of other bloggers that have addressed the sexuality issue and have done it quite well. As for eliminating Ashley's discomforts, I don't believe at six or eight years old, she had any time to experience them. Also, to perform these surgeries on the chance that she may experience cramps is silly. Cramps are not universal.

I stand behind my statement that it's not o.k. I don't think doing this to any child is ever a good decision. I also have pointed out twice now, that the real issue is that we do a lousy job at helping parents with these children.

As for the fact that many people were involved in this decision doesn't make it right and I haven't seen any research that states that keeping a woman smaller gives her a better quality of life. I think a lot of peoople failed Ashley that day.

For the record, I also don't think I was being condescending to other parents. I simply and stating what I believe to be true. I can not stand by silently when I feel this is wrong.

Peace.

Mete said...

Dream Mom, I'm glad you are expressing your opinion, even if it differs from mine (which honestly, is not even made up on one side or another). I just felt that you made some blanket statements, and I wanted to contribute an alternate point of view from someone in a similar situation.

I suppose I am extra sensitive to folks making judgements of parents with special needs children. I have had some of our medical decisions questioned by outsiders who can't truly understand our son's situation. It terrifies me that strangers may one day overrule our wishes for him, simply because they disagree with us.

I think we all agree that the real issue is the amount of support parents of special needs children get and the difficulty we all face in making their lives as full, rich and comfortable as possible. As always, I applaud you for bringing light to these issues, even long before this story hit the press.

Dream Mom said...

Thanks, Mete. I think you and I are on the same page but just have a different perspective. I think there are a lot of other solutions to some of the issues her parents faced and I think the real issue is the lack of services. If the Ashley Treatment has highlighted that, then maybe we can take a first step to get the help that our children need.

medrecgal said...

Yes, but don't you see, providing access to appropriate services for everybody would force the government to do something useful with our tax dollars (sarcasm intentional)...! I'm sure some will come along and say "yes, well, that's all well and good, but it would bankrupt our healthcare system and smacks of a sort of socialized medicine".

I have a hard time believing that some have reached the conclusion that it's better to effectively keep their children with severe disabilities infantilized than to actually force the "system" (as woefully inadequate as it can be at times) to provide respite care and other needed services. That's a sad commentary on the "system" as much as it is on these misguided but obviously concerned parents who chose an option that is distasteful to many who hear about it.

Something about what they did to Ashley strikes me deeply as being wrong, and yet, I can intellectually understand why they would choose this kind of procedure as an alternative to dealing with the added problems of a reproductive capacity that will likely never be used.

I'm sure people will come along and say something like "well, providing proper care for these kinds of people will cost too much money, and no one derives any benefit". That is what is REALLY wrong here. If our current social and medical systems were up to snuff in offering better choices to parents of severely disabled children (aside from the black or white of "care for them on your own full time or institutionalize them" that's common now), there wouldn't be situations like the one faced by Ashley's parents. Until there is a complete overhaul of our society's distaste for those with disabilities (I've seen it close up and personal as one such individual), there will be no truly good answer to dilemmas like this.

Heidirific said...

I know that is is a bit of aside, but I wanted to respond to one of the anonymous comments. First, finding qualified people to work with adults with disabilities and attending to their toileting needs. When I was in college and graduate school, I worked as a personal care assistant. But there are people who are willing to do this type of work on a long term basis. You just have to pay them a liveable wage (8.00 an hour isn't really a decent wage for this work, at least not in a metropolitan area). Further, toileting isn't the only thing you do in a personal care assistant job. There are a lot of joys in the job as well. I really enjoyed the work and continued through my first two years of working as a speech therapist. I still am willing to change clients if needed. It isn't that big of a deal.

Now, as to people with severe/profound disabilties lives being pitiful. You can't judge others' quality of life by your standards. Everyone gets pleasure from different things and has different priorities. Just because people with severe/profound cognitive impairments enjoy different things doesn't mean that their lives are pitiful. Many of my clients with profound disabilities are very happy.

Finally, people with severe disabilties don't need your pity. They need action. They need grassroots efforts to change policies in the government. They need people to lobby health insurance companies (or sue to force them) to pay for durable medical equipment.

Anonymous said...

I know this will come across as very crass, even though that is not my intent at all. But I am curious.

Curious as to why, when you are faced with a severely disabled child that you know from the get go will require extensive medical treatment for the rest of their lives, why do you expect taxpayers to help you care for your child?

I just don't get it.

Becca said...

To the latest Anon. poster -

You're right, you do sound rather crass.

People pay tax into a common social pot for the common good, as decided by a society's rulers at whatever level.

To turn your question around, what makes you think that profoundly disabled people at any age should not recieve all appropriate support without undue financial hardship to any one person, even/especially their parents?

Dream Mom said...

Anonymous 2:42-I can understand your concern, especially if you've never had any experience with anyone who cared for the severely disabled or if you've never known anyone. It probably would appear that way, without understanding what we are asking.

You are right, caring for a severely disabled child can be expensive and difficult. The types of things I stated that we need are licensed daycare center that accept and care for severely disabled children so that I and parents like me can work full time jobs. While daycare centers can not legally deny a child, most do not have the resources available. The reason most can't provide care, is that they don't have a nurse on staff 24/7 and because they can't make any money; while a normal daycare center might have 7 children to one adult, these children often require one to three adults per every one child. There are a handful of places that provide care for very young children, but after the age of six or so, it's virtually non-existant.

In addition, my point was that many insurance companies are cutting benefits for things that these children need-things like physical therapy, equipment for bathing, private duty nursing care, etc. When they cut these benefits, the need does not go away and the only alternative that is often left for most people that are severely disabled is Medicaid. It is precisely because of the lack of things like daycare, that people are forced into that, not because they want to. As for Dear Son, he is covered by two different insurance plans, neither of which is Medicaid.

So I think if you re-read this, you will understand that I am not asking the government to pay for all of this, I am saying we need to do a better job of providing these things so that we have the same opportunities that other people have-to work full time, to save for our own retirement, to take a vacation, etc.

I also would like to see some provisions so that we could save for our severely disabled children, via a retirement type plan, which ultimately would lessen any government assistance for these children, many of whom will never work.

Oh, and you didn't ask but I'll tell you. I had no reason to believe I was having a severely disabled child. My pregnancy was full term and all of my prenatal tests were perfectly normal.

I hope this helps your understanding of the issues facing these children.

imfunnytoo said...

Dream Mom.

Thank you Thank you for this post.

I'm in agreement.

Danielle said...

I have enjoyed reading your posts and every one's responses. I cannot say that I can take one side or the other and I do feel that it would be a very difficult decision if a parent asked me to do this to a pediatric patient of mine in the future. However, I do feel that we, as the public, are all to quick to jump on the "media bandwagon" and pick and choose sides when somethings, like this thing, should maybe private. I feel for anyone who gets caught up in the media firestorm, for whatever reason. Hopefully, some good will come of it, as you have alluded to.

Anne said...

Thank you for your wonderful blog. I've been following the Ashley issue and pretty much horrified by it. There is a little girl in my son's class with some serious issues, unlikely she'll ever walk, talk or feed herself. But she has a smile to melt your heart and does interact with the other kids. I think about this surgery done to her and it breaks my heart.

Thirza said...

That's a good post. I just don't know why so many people are running around saying not to judge AND that the Ashley treatment was worthwhile (which sounds like a judgement to me). I also notice those people saying "Don't judge" have very firm (and very low) opinions of the intellectually disabled with very little experience to back it up.

Just an observation.

Hi Kooky said...

Hi Dream Mom,

I found you from Fat Doctor's website.

I am a mom, and just want to say that I am so impressed and awed by what you do. You are a fantastic woman and your son is sooooooo blessed to have you as his mom.

I can only pray that I would do as well in your situation as you do. Your attitude, actions and perseverance are truly inspirational.

Crystal M. said...

I for one don't agree with you dream mom. You are about the last person on earth I expected to be so opinionated.

You, above all, know what it is like to have to make decisions about Dear Son's care. How can you sit in judgement of someone else and the decisions they have made for their child? You are on dangerous grounds here.

You are comparing their child to yours. There may not be that much of a comparison. Dear son responds to you. You knwo that he is aware. He likes looking at and flirting with girls. He likes going to school..Their child doesn't sound like she is as aware as what dear son is.

Dream mom, you have to get epidurals in your spine, to ease the pains caused from the stress put on it from lifting him. You have stated many times how you use to work out and still, this is very physically hard on you. You also have one and only one child. You can give him everything you have. When people have more than one child, their time cannot be devoted entirely to just the one who is disabled. Their normal children need and require time, attention and affection.

Please don't keep judging these parents just because their decisions have differed from your own.

The Ashley treatment makes me want to say that "Never" would I do this to one of my children. The truth is, I have no idea what I would do in their position, nor what I would do in yours. I don't pass judgement on you dream mom and I shall not pass judgement on them either.

I did, at one time have a friend who was severely disabled. When she reached adult maturity she had to be placed in a residential facility for the severely disabled. her mother could no longer lift her or care for her. I'm really not sure how her growing to maturity and then being admitted to a home away from home, helped her situation. In fact, Im sure it didn't. But, there really was no option. her mother could no longer care for her.

Not everyone is as strong and as able as you. Not everyone is a "Dream Mom." That does not mean they don't love their children. None of us have the right to judge!

You have been looking for a reason and a way to attack society for the lack of things that disabled children need. I agree, things need to change. don't use this family to get your point across. You don't need to do it that way. If you do, then join forces with them. Talk of how societies refusal of providing for these children and their families are causing some families to resort to drastic measures, to continue caring for their children. But don't use the parents as your weapon.

Professor Zero said...

"People have totally missed the point. The problem is that we don’t have enough services available and help to care for our children at home. That is the real issue behind this whole mess."

This was my thought. I don't have a disabled child, though, so it's interesting that someone who does, says the same.

Re the thread - I second Thirza.

To anonymous 5:49: come, now. As a taxpayer I end up supporting various things I disagree with (the war) or just don't want (i.e. more freeways), or which do not benefit me materially in a direct way. To the extent that my tax money could be helping to support Dear Son or someone like him, someone I don't even know, etc.: I'd rather live in a society that does extend such benefits to people with these kinds of situations, than one which does not. It's quite simple, really!

Anonymous said...

I think one thing that hasn't come up is the parents' discomfort with their disabled daughter's sexual development. Growing breasts is not uncomfortable. Menstruation can be stopped with medications, if cramps become an issue, or menstruating is distressing to the child. A hysterectomy just seems really extreme.

While I find some of their arguments understandable, (being able to lift her easily), I don't think the family's discomfort with their daughter's sexuality has been addressed or acknowledged. And while allowing development to precede naturally is a known quantity, not allowing it is not. The truth is, they don't know what repercussions these surgeries will have on their daughter's future.

It is possible that sexual development for this child would provide a source of pleasure for her. I wonder if withholding it will be a source of frustration she won't be able to express. I am not criminalizing them, just wishing that they felt like their needs mattered, too. They keep saying "we're doing this for Ashley, for Ashley...." and not aknowledging their own needs and discomforts, which is making it harder to fix the actual problems.

I am a RN who has been changing adult diapers for the better part of fifteen years. I don't think that is what is keeping caregivers away, more the rotten pay/lack of benes for in-home care.

Elizabeth Wakeman said...

I wanted to let you know that I am teaching a bioethics class. This year I am asking the students to read quite a few blog posts on the issues -- trying to get them to understand the experience of people who live there. We are covering the Ashley Treatment and I have assigned two of your posts.

I doubt many of them will leave comments, and I wanted you to know what was happening when you see the spike in readership next week.

At least I hope there is a spike. 45 students are supposed to read this post and your 1/5/2007 post, "Pillow-Talk - The Debate Over the Ashely Treatment"

Thank you for being so articulate on the issue.

Dream Mom said...

Thank you Elizabeth for the heads up.

This is an issue I am extremely passionate about. Although it's been over a year, I still think it was horribly wrong. My son is now 6 feet tall and weighs 165 pounds. He has since been diagnosed with a progressive neurological disease related to his gene. He continues to lose milestones. In addition, I had back surgery last year (I had back issues all of my life). Despite those changes, I still feel that allowing my Dear Son to grow up to be a handsome and full grown man is not only the right decision but a matter of human rights.

One other post that I wrote is this one:

http://dreammom.blogspot.com/2007/01/ashley-treatment-final-thoughts.html

In that post, I evaluate Ashley's parents argument point by point on why I think their argument does not hold water and is not true. I have lived it. ANd even if my Dear Son were not conscious or had any mental functioning, I still would think it's wrong to do anything but allow him to grow.

Finally, I am sure you have seen this article of the suicide death of the lead physician, Dr. Daniel Gunther in the Ashley Treatment. It can be found here:

http://seattlepi.nwsource.com/health/335019_gunther11.html

I am thrilled you are talking about such an important issue. I hope your students realize that this is not a medical decision that should ever be made. As for my Dear Son, it has been a real pleasure watching him grow and mature into a man. I shave his moustashe and beard every week, along with his other grooming tasks. I talk about his big muscles and how manly he is. He is proud when I talk about that. He has good self esteem. It would not be the same if I would have altered him. I think I would have done him a huge disservice, as his mother and advocate to not allow him to grow.

Best of luck. If you'd like, you can e-mail your comments or feedback on the class at dreammom90@yahoo.com

Thank you.

Anonymous said...

Hi my name is Vanna and I am actually in a bioethics class college course and my teacher gave the class an assignment to read the posting of your daughter. She peobably doesn't think any one was going to acutally read them, but I rather enjoyed reading them. It really opens your eyes to what is really out there. Being in college I am far from having children myself but just the thought of having a child in the near future, you never know what God gives you. I noticed you have 2 other children who dont haver the same disabilities as Ashley, and it just makes me think that it doesnt matter who you are or when you decided to have kids. Its up to God who you get, it has nothing to do with past down genes. It's all of Gods little blessings. Thank you for being so open to the world with your little pillow angel

Dream Mom said...

Thank you Vanna the compliments! I am glad you enjoyed reading them.

To clarify, I only have one child, Dear Son. His disabilities were caused by a genetic mutation of the ARX gene, which occurred at random, meaning it was not from my ex-husband or myself.

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