Monday, February 1, 2010

Ashley Treatment...Alive and Well...Sadly

I am very sad to report that a recent update on Ashley's parents blog indicates that "about a dozen parents from around the world" have been "successful" at having the "treatment" provided for their children (my bet is that they are all female, since the protocols have already been set up for girls...) and that a few hospital ethics commitees found no ethical problems with the procedures.

I am sorry to hear that this is something to celebrate...that it is perceived by Ashley's parents that children are "benefiting" from their example. Unfortunately, it does not come as a surprise that hospital "ethics" committees have no problems with this either...doctors have far different views about disability than disabled people do...and because of society's misguided belief that doctors are the "experts" on all things medical and that it is just plain vanity to question them and their perspectives, the door is now wide open for all sorts of abuses and questionable practices to emerge (see here for details).

Here is a slippery slope in the making, ladies and gentlemen. If you do not believe me, then I will provide you with the very sort of problems that will soon arise from this abominable violation of human rights, right off of the parents' blog. Please read the following carefully, taken from the site:

A quote from thousands of private emails that were sent to

Received on Monday July 6th 2009

"I want to thank you for pioneering this treatment to aid all the pillow angels out there in the world today. As a pediatric nurse practitioner I cannot express the sheer horror of watching children grow into adults and have their parents try to move them. I take care of a 17 y.o. male with bilateral femoral and tibia fractures (large bones in both legs) from turning him in bed. He weighs close to 200 lbs. Surgery to repair is not an option as he would never come off the ventilator. I have another patient who is non-verbal with severe fetal alcohol syndrome. When her menses come she screams, will not let you put pads on her and throws the discharge at caregivers. She cannot have Depo because of bone loss risks and we have been unable to stabilize her cycle with the pill. I think if those people who are appalled by the treatment would come and see the children in institutions, developing sores because they are so hard to turn, listen to the parents talk who had to put their children in a institution because they could not care for them at home, and would see the bedridden children/adults who are raped and then die during childbirth, the argument would cease. Thank you for publicizing your treatment. I am hopeful that someday we may offer more pillow angels this same gift and allow them to stay at home with the people that love them."

Hopefully you will have noticed some details in this letter. First off..."the horror" of parents trying to move adult children. HORROR. Does that strike you as a bit, ummm, severe as a view of a parent moving an adult child? Dream Mom does it many times a day and I have never heard her describe it as a horror...nor does Single Dad, even with his back out...It's hard work indeed. That's what lifts were invented for, by the way. This is small potatoes, though, in the big picture.

The letter then describes an individual who weighs "almost" 200 lbs (how much, exactly? You see, 20-30lbs here or there, who cares about accuracy, if it makes for a good story) who is difficult to move in this woman alone? If so, why? We have rules here in Ontario that say a single caregiver cannot lift an individual over 40lbs...after that, one must use a lift, or, for bed moves, a second person. There are also techniques to move large bodies. I know all about them. One you learn in CPR training...other moves involve the proper use of underpads on the beds, that slide. You pull the pad toward you (they even have handles on them) and then you roll the individual over using the pad. Again, it's not easy work, but if it's your JOB, then you learn how to do it, now, don't you? Secondly, there is no further mention of this person's physical/mental status...there is only reference to weight. Being disabled and possibly being overweight or just plain big is considered a reason for G.A.?

Next is a description of a female with severe FAS, who is capable enough to know she is menstruating, capable enough to grab her pads and throw them at the caregivers and capable enough to fight them off. I do not wish for one minute to dismiss the very real and frustrating challenges that come with caring for individuals who have severe behavioural disabilities. I think there's a special place in heaven for people and parents who do this...but...that woman is no Ashley, now is she? Remember, the Ashley procedures are supposedly meant only for those deemed "severely disabled" by the "hope" of cognitive development, no ability to use willfull actions (walking, hands and arms, head movements), tube fed. Does that describe this woman with FAS?

Before I move on, look what's going on here...remember, this is on Ashley's parents site as a justification for the "treatment"....this is not picked up randomly from the blogosphere. THEY put it there. Neither of the individuals described here have Ashley's disabilities, yet here is a healthcare "professional" (an expert, like a doctor, in these matters of ethics) insinuating that G.A. would have been appropriate for these individuals. Suddenly, the strict and very detailed criteria for G.A. candidacy have slipped away. Wiped away by someone in the medical field and by Ashley's parents themselves.

We hope that by now it is clear that the Ashley Treatment is about improving Ashley’s quality of life and not about convenience to her caregivers..

Though it may be true that Ashley's parents had HER best interests in mind, does this letter from a healthcare "professional" give you the impression that the interest is strictly for the clients....or that the caregivers are having a hard time?

Ahhh...that slippery, slippery slope....

Indeed, when you read the rest of the email, it is about the appaling conditions in the institutions where this person lives. Is G.A. the answer to this unacceptable fate for the severely disabled (or the not-so-severely disabled as well, apparently)? What leap of logic makes anyone think that disabled people of a smaller stature would in any way receive better treatment in institutions of this nature?

Furthermore, we strongly believe that the comfort and quality of life benefits of the Ashley Treatment are even more relevant if Pillow Angels end up in institutions, which was indicated to us in emails from many care givers.

Would it be correct to say, then, that individuals who are small who are living in institutions are better cared for than individuals who are NOT small? If there isn't enough staff to care for, feed, turn, bathe, dress and protect fully grown adults, why would there be enough staff to care for smaller adults? What magic equation made that happen here?

The Ashley "treatment" is now being put forth as an answer to unacceptable living environments for the disabled. Wow! So simple. I can almost promise you it will happen. Then we will have institutions full of poorly cared for "Ashleys".

If you did not believe in slippery slopes arguments before, I hope you see just what happens to these sorts of questionable "treatments" once they move out into the public domain and become mainstream. This is dangerous in the extreme people...and I pulled it right off the parents' own blog.

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