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1. InterText v9n5: The Door Behind It by Michael Sato
www.intertext.com/magazine/v9n - [Cached]Published on: 4/18/2006 Last Visited: 4/18/2006
It is true that Galen is very special to us. He is one of our most importantcustomers, potentially crucial to the future of the program and to the lives ofany number of similarly challenged individuals. This does not mean that we areusing him. The Residential Support branch of HVRS was founded on the beliefthat there exists no reason that the natural right to learn personalresponsibility, to appreciate the value of risk, and most of all, to expressfreedom of choice within the framework of a mainstreamed living environmentshould be denied anyone because he or she is mentally or physically challenged. That is to say, we believe these rights to be transcendental, inclusive,universal. Despite what Friends or any other voice may suggest, it is for thisreason and no other that we decided one year ago to become the firstresidential support service of its kind to review the applications of those whoare situated outside of the relatively small circle of so-called"high-functioning" candidates that are considered by other similar agencies. When we accepted Galen's file, Galen became the first individual in anyresidential support service in this state on whom no criteria whateverregarding his functionality were imposed.
I see no basis for the charge that by this we are invoking mere abstractions inorder to validate neglect or to allow consumers to, as you say, "stagnate." Onthe contrary, we have from the beginning been supplementing the provision offreedom vigorously with programs designed to ensure that Galen's progress inthe mainstreaming process continue. To cite one concrete example, just thisweek our behaviorist Linda Weber observed Galen at his home and is this momentworking to obtain the loan of a speaking device that, through cutting-edgetechnology, should allow Galen to express his desires even more easily than heis presently able.
...
I sympathize completely with yourobservation that the very reason we chose this house for Galen was that it hasa large backyard that would serve to allow Galen to go outside at will. It isunfortunate that, over the course of the year, we have been unable to find themeans to landscape the yard to make it a safe area for Galen. We are certainlycontinuing, in earnest, our search for the requisite funds.
...
I am,frankly, ashamed to admit this since Galen's living situation seems to be quiteunique, perhaps unprecedented, and therefore of considerable implication. Afterspending several hours researching Galen's background and observing him in hishome, that I believe your concerns regarding Galen are extremely warranted andrequire urgent action.
...
We think this is aprovocative and precarious position, and it is surely unreasonable to arguethat there is no connection between it and the fact that since Galen moved intohis home one year ago, he has been taken to the emergency room, by ambulance,no less than five times: once, when he stopped breathing during a seizure; twotimes for choking on non-comestible objects (a peach pit, a plastic fork); andtwo times for injuries suffered from falling. Both of the latter injuries wereto the face and head, and probably would not have occurred had Galen beenwearing his helmet. When I queried Galen's community support facilitator, LanceCameron, as to why Galen did not wear his helmet, Mr. Cameron answered to theeffect that the helmet had been discarded because it is "socially stigmatizing"and therefore obstructs the process of "mainstreaming" Galen into hiscommunity. When I queried Galen's community support facilitator, LanceCameron, as to why Galen did not wear his helmet, Mr. Cameron answered to theeffect that the helmet had been discarded because it is "socially stigmatizing"and therefore obstructs the process of "mainstreaming" Galen into hiscommunity.
...
In the five years Galen spent at the state facility in Easton, Galen requiredhospitalization only one time.
...
Andrew proceeded to proffer to Galen a number of verbal prompts regardingdaily-life choices (Would you like to listen to music?
...
Would you like spaghettifor dinner?), to which Galen seemed to be completely uninterested, if notuncomprehending. When I asked Andrew if I had caught Galen on a bad day, Andrewanswered flatly that he did not expect Galen to respond to any of his prompts,and that in fact Galen has in the past year never once responded, verbally orotherwise, to any of the prompts that Andrew has on a daily basis given to him. Further inquiry was to reveal to me that so far as Andrew knew, Galen has notuttered a single intelligible word since moving into the home.
...
The doctor believes that since finishing school it is likelythat Galen has forgotten the words he then knew, or the mental effort requiredto produce utterances has increased so much as to be prohibitive. In thedoctor's view, it is very unlikely that without a regimented and sustainedprogram of education Galen would again be able to mark gains in this area ofhis functionality.
...
Regrettably, the back door remainslocked, and therefore the one thing that Galen shows an active interest in, heis forbade.
...
In my view, that the safetystandards of Galen's independent living arrangement are lower than those at thestate facility in Easton seems likely; however, that Galen has benefitedcommensurately from his "freedom" is, at best, doubtful. Unless matters changeby February's end, my recommendation to you will have to be that you seriouslyconsider allowing Galen to return to his home in Easton, where he can be caredfor by trained and experienced personnel, and the yard is always well kept.
...
"With this machine," hesays, "Galen will be able to talk." I'm supposed to try fifteen times a day toget Galen to learn how to use the thing. So far, after three days andforty-five tries, he doesn't get it.
...
Galen's never going to be able to use the thing--not in three moredays or three more years. They brought in the board because they think thereason Galen doesn't say what he wants is because physically he can't speak. They're wrong. Galen's got a tongue and a throat and a voice just like anyoneelse. What Galen doesn't have, that a guy needs to speak, is words. The board'snot going to make any difference for Galen, because if you've got nowords--words in your head--then how can you have pictures? To Galen a pictureof a Coke means exactly what the word "Coke" means: nothing.
...
1) Galen demonstrate, unambiguously, both the willingness and ability toexpress his will in some matter affecting the course of his daily life.
2) The issue of the backyard be resolved.
...
Please take amoment to remember the quality of life at the state facility that compelled youa year ago to seek an alternative for Galen.
...
Remember, Matt, that Galen lived in the state facility for five years.
...
If you believe this too, then I imploreyou to relax your conditions, and give your brother Galen a little more timeand one more chance.
...
It seems one ofthe staff at the Easton facility broke two of Galen's fingers with a broomstickon a morning that Galen was slow to wake up for breakfast.
...
I am writing to you in regard to your brother Galen Bottacci, at the request ofthe Community Support Facilitator at Harbor Vocational and ResidentialServices, Lance Cameron.
...
After observing Galen, I was able to concludewithin an acceptable level of probability that Galen does not communicateverbally to any recognizable effect.
...
I can't do that want-board with Galen anymore.
...
Mr. Bottacci,
I'm sorry that I could not convince you to withdraw the conditions you setregarding Galen's home and his upcoming funding review. I know that what we allwant is what's best for Galen, and that sometimes these decisions are difficultto make.
...
One,I was wrong about Galen and the want-board.
...
Mr. Bottacci,
I'm happy to inform you that the matter of the backyard has been resolved, andalso that Galen has begun to express his desires in a clear and unequivocalmanner.
...
Spent alot of time--most of the past week--here with Galen and the want-board, tryingto get Galen to learn the thing before vacation (even though he stilldidn't know where he wanted to go) because after vacation, he said, it would betoo late. Let me tell you, that man has patience. He tried everything you canthink of. He begged Galen to pay attention. But Galen never did anythingbut stare out the back window at that old backyard.
At the end of it I didn't know who I felt more sorry for, Galen or Lance.
...
I swear Galen must have been counting along, because theinstant I put that key in the lock and lock went `click' he popped from hischair and sped right across the room as fast as I have ever seen him run,grinni -
2. InterText v9n5: The Door Behind It by Michael Sato
www.intertext.com/magazine/v9n - [Cached]Published on: 1/11/2006 Last Visited: 1/11/2006
It is true that Galen is very special to us. He is one of our most importantcustomers, potentially crucial to the future of the program and to the lives ofany number of similarly challenged individuals. This does not mean that we areusing him. The Residential Support branch of HVRS was founded on the beliefthat there exists no reason that the natural right to learn personalresponsibility, to appreciate the value of risk, and most of all, to expressfreedom of choice within the framework of a mainstreamed living environmentshould be denied anyone because he or she is mentally or physically challenged. That is to say, we believe these rights to be transcendental, inclusive,universal. Despite what Friends or any other voice may suggest, it is for thisreason and no other that we decided one year ago to become the firstresidential support service of its kind to review the applications of those whoare situated outside of the relatively small circle of so-called"high-functioning" candidates that are considered by other similar agencies. When we accepted Galen's file, Galen became the first individual in anyresidential support service in this state on whom no criteria whateverregarding his functionality were imposed.
I see no basis for the charge that by this we are invoking mere abstractions inorder to validate neglect or to allow consumers to, as you say, "stagnate." Onthe contrary, we have from the beginning been supplementing the provision offreedom vigorously with programs designed to ensure that Galen's progress inthe mainstreaming process continue. To cite one concrete example, just thisweek our behaviorist Linda Weber observed Galen at his home and is this momentworking to obtain the loan of a speaking device that, through cutting-edgetechnology, should allow Galen to express his desires even more easily than heis presently able.
...
I sympathize completely with yourobservation that the very reason we chose this house for Galen was that it hasa large backyard that would serve to allow Galen to go outside at will. It isunfortunate that, over the course of the year, we have been unable to find themeans to landscape the yard to make it a safe area for Galen. We are certainlycontinuing, in earnest, our search for the requisite funds.
...
I am,frankly, ashamed to admit this since Galen's living situation seems to be quiteunique, perhaps unprecedented, and therefore of considerable implication. Afterspending several hours researching Galen's background and observing him in hishome, that I believe your concerns regarding Galen are extremely warranted andrequire urgent action.
...
We think this is aprovocative and precarious position, and it is surely unreasonable to arguethat there is no connection between it and the fact that since Galen moved intohis home one year ago, he has been taken to the emergency room, by ambulance,no less than five times: once, when he stopped breathing during a seizure; twotimes for choking on non-comestible objects (a peach pit, a plastic fork); andtwo times for injuries suffered from falling. Both of the latter injuries wereto the face and head, and probably would not have occurred had Galen beenwearing his helmet. When I queried Galen's community support facilitator, LanceCameron, as to why Galen did not wear his helmet, Mr. Cameron answered to theeffect that the helmet had been discarded because it is "socially stigmatizing"and therefore obstructs the process of "mainstreaming" Galen into hiscommunity. When I queried Galen's community support facilitator, LanceCameron, as to why Galen did not wear his helmet, Mr. Cameron answered to theeffect that the helmet had been discarded because it is "socially stigmatizing"and therefore obstructs the process of "mainstreaming" Galen into hiscommunity.
...
In the five years Galen spent at the state facility in Easton, Galen requiredhospitalization only one time.
...
Andrew proceeded to proffer to Galen a number of verbal prompts regardingdaily-life choices (Would you like to listen to music?
...
Would you like spaghettifor dinner?), to which Galen seemed to be completely uninterested, if notuncomprehending. When I asked Andrew if I had caught Galen on a bad day, Andrewanswered flatly that he did not expect Galen to respond to any of his prompts,and that in fact Galen has in the past year never once responded, verbally orotherwise, to any of the prompts that Andrew has on a daily basis given to him. Further inquiry was to reveal to me that so far as Andrew knew, Galen has notuttered a single intelligible word since moving into the home.
...
The doctor believes that since finishing school it is likelythat Galen has forgotten the words he then knew, or the mental effort requiredto produce utterances has increased so much as to be prohibitive. In thedoctor's view, it is very unlikely that without a regimented and sustainedprogram of education Galen would again be able to mark gains in this area ofhis functionality.
...
Regrettably, the back door remainslocked, and therefore the one thing that Galen shows an active interest in, heis forbade.
...
In my view, that the safetystandards of Galen's independent living arrangement are lower than those at thestate facility in Easton seems likely; however, that Galen has benefitedcommensurately from his "freedom" is, at best, doubtful. Unless matters changeby February's end, my recommendation to you will have to be that you seriouslyconsider allowing Galen to return to his home in Easton, where he can be caredfor by trained and experienced personnel, and the yard is always well kept.
...
"With this machine," hesays, "Galen will be able to talk." I'm supposed to try fifteen times a day toget Galen to learn how to use the thing. So far, after three days andforty-five tries, he doesn't get it.
...
Galen's never going to be able to use the thing--not in three moredays or three more years. They brought in the board because they think thereason Galen doesn't say what he wants is because physically he can't speak. They're wrong. Galen's got a tongue and a throat and a voice just like anyoneelse. What Galen doesn't have, that a guy needs to speak, is words. The board'snot going to make any difference for Galen, because if you've got nowords--words in your head--then how can you have pictures? To Galen a pictureof a Coke means exactly what the word "Coke" means: nothing.
...
1) Galen demonstrate, unambiguously, both the willingness and ability toexpress his will in some matter affecting the course of his daily life.
2) The issue of the backyard be resolved.
...
Please take amoment to remember the quality of life at the state facility that compelled youa year ago to seek an alternative for Galen.
...
Remember, Matt, that Galen lived in the state facility for five years.
...
If you believe this too, then I imploreyou to relax your conditions, and give your brother Galen a little more timeand one more chance.
...
It seems one ofthe staff at the Easton facility broke two of Galen's fingers with a broomstickon a morning that Galen was slow to wake up for breakfast.
...
I am writing to you in regard to your brother Galen Bottacci, at the request ofthe Community Support Facilitator at Harbor Vocational and ResidentialServices, Lance Cameron.
...
After observing Galen, I was able to concludewithin an acceptable level of probability that Galen does not communicateverbally to any recognizable effect.
...
I can't do that want-board with Galen anymore.
...
Mr. Bottacci,
I'm sorry that I could not convince you to withdraw the conditions you setregarding Galen's home and his upcoming funding review. I know that what we allwant is what's best for Galen, and that sometimes these decisions are difficultto make.
...
One,I was wrong about Galen and the want-board.
...
Mr. Bottacci,
I'm happy to inform you that the matter of the backyard has been resolved, andalso that Galen has begun to express his desires in a clear and unequivocalmanner.
...
Spent alot of time--most of the past week--here with Galen and the want-board, tryingto get Galen to learn the thing before vacation (even though he stilldidn't know where he wanted to go) because after vacation, he said, it would betoo late. Let me tell you, that man has patience. He tried everything you canthink of. He begged Galen to pay attention. But Galen never did anythingbut stare out the back window at that old backyard.
At the end of it I didn't know who I felt more sorry for, Galen or Lance.
...
I swear Galen must have been counting along, because theinstant I put that key in the lock and lock went `click' he popped from hischair and sped right across the room as fast as I have ever seen him run,grinni -
3. www.intertext.com
www.intertext.com/magazine/v9n - [Cached]Published on: 1/5/1996 Last Visited: 5/19/2007
It is true that Galen is very special to us. He is one of our most importantcustomers, potentially crucial to the future of the program and to the lives ofany number of similarly challenged individuals. This does not mean that we areusing him. The Residential Support branch of HVRS was founded on the beliefthat there exists no reason that the natural right to learn personalresponsibility, to appreciate the value of risk, and most of all, to expressfreedom of choice within the framework of a mainstreamed living environmentshould be denied anyone because he or she is mentally or physically challenged. That is to say, we believe these rights to be transcendental, inclusive,universal. Despite what Friends or any other voice may suggest, it is for thisreason and no other that we decided one year ago to become the firstresidential support service of its kind to review the applications of those whoare situated outside of the relatively small circle of so-called"high-functioning" candidates that are considered by other similar agencies. When we accepted Galen's file, Galen became the first individual in anyresidential support service in this state on whom no criteria whateverregarding his functionality were imposed.
I see no basis for the charge that by this we are invoking mere abstractions inorder to validate neglect or to allow consumers to, as you say, "stagnate." Onthe contrary, we have from the beginning been supplementing the provision offreedom vigorously with programs designed to ensure that Galen's progress inthe mainstreaming process continue. To cite one concrete example, just thisweek our behaviorist Linda Weber observed Galen at his home and is this momentworking to obtain the loan of a speaking device that, through cutting-edgetechnology, should allow Galen to express his desires even more easily than heis presently able.
...
I sympathize completely with yourobservation that the very reason we chose this house for Galen was that it hasa large backyard that would serve to allow Galen to go outside at will. It isunfortunate that, over the course of the year, we have been unable to find themeans to landscape the yard to make it a safe area for Galen. We are certainlycontinuing, in earnest, our search for the requisite funds.
...
I am,frankly, ashamed to admit this since Galen's living situation seems to be quiteunique, perhaps unprecedented, and therefore of considerable implication. Afterspending several hours researching Galen's background and observing him in hishome, that I believe your concerns regarding Galen are extremely warranted andrequire urgent action.
...
We think this is aprovocative and precarious position, and it is surely unreasonable to arguethat there is no connection between it and the fact that since Galen moved intohis home one year ago, he has been taken to the emergency room, by ambulance,no less than five times: once, when he stopped breathing during a seizure; twotimes for choking on non-comestible objects (a peach pit, a plastic fork); andtwo times for injuries suffered from falling. Both of the latter injuries wereto the face and head, and probably would not have occurred had Galen beenwearing his helmet. When I queried Galen's community support facilitator, LanceCameron, as to why Galen did not wear his helmet, Mr. Cameron answered to theeffect that the helmet had been discarded because it is "socially stigmatizing"and therefore obstructs the process of "mainstreaming" Galen into hiscommunity. When I queried Galen's community support facilitator, LanceCameron, as to why Galen did not wear his helmet, Mr. Cameron answered to theeffect that the helmet had been discarded because it is "socially stigmatizing"and therefore obstructs the process of "mainstreaming" Galen into hiscommunity.
...
In the five years Galen spent at the state facility in Easton, Galen requiredhospitalization only one time.
...
Andrew proceeded to proffer to Galen a number of verbal prompts regardingdaily-life choices (Would you like to listen to music?
...
Would you like spaghettifor dinner?), to which Galen seemed to be completely uninterested, if notuncomprehending. When I asked Andrew if I had caught Galen on a bad day, Andrewanswered flatly that he did not expect Galen to respond to any of his prompts,and that in fact Galen has in the past year never once responded, verbally orotherwise, to any of the prompts that Andrew has on a daily basis given to him. Further inquiry was to reveal to me that so far as Andrew knew, Galen has notuttered a single intelligible word since moving into the home.
...
The doctor believes that since finishing school it is likelythat Galen has forgotten the words he then knew, or the mental effort requiredto produce utterances has increased so much as to be prohibitive. In thedoctor's view, it is very unlikely that without a regimented and sustainedprogram of education Galen would again be able to mark gains in this area ofhis functionality.
...
Regrettably, the back door remainslocked, and therefore the one thing that Galen shows an active interest in, heis forbade.
...
In my view, that the safetystandards of Galen's independent living arrangement are lower than those at thestate facility in Easton seems likely; however, that Galen has benefitedcommensurately from his "freedom" is, at best, doubtful. Unless matters changeby February's end, my recommendation to you will have to be that you seriouslyconsider allowing Galen to return to his home in Easton, where he can be caredfor by trained and experienced personnel, and the yard is always well kept.
...
"With this machine," hesays, "Galen will be able to talk." I'm supposed to try fifteen times a day toget Galen to learn how to use the thing. So far, after three days andforty-five tries, he doesn't get it.
...
Galen's never going to be able to use the thing--not in three moredays or three more years. They brought in the board because they think thereason Galen doesn't say what he wants is because physically he can't speak. They're wrong. Galen's got a tongue and a throat and a voice just like anyoneelse. What Galen doesn't have, that a guy needs to speak, is words. The board'snot going to make any difference for Galen, because if you've got nowords--words in your head--then how can you have pictures? To Galen a pictureof a Coke means exactly what the word "Coke" means: nothing.
...
1) Galen demonstrate, unambiguously, both the willingness and ability toexpress his will in some matter affecting the course of his daily life.
2) The issue of the backyard be resolved.
...
Please take amoment to remember the quality of life at the state facility that compelled youa year ago to seek an alternative for Galen.
...
Remember, Matt, that Galen lived in the state facility for five years.
...
If you believe this too, then I imploreyou to relax your conditions, and give your brother Galen a little more timeand one more chance.
...
It seems one ofthe staff at the Easton facility broke two of Galen's fingers with a broomstickon a morning that Galen was slow to wake up for breakfast.
...
I am writing to you in regard to your brother Galen Bottacci, at the request ofthe Community Support Facilitator at Harbor Vocational and ResidentialServices, Lance Cameron.
...
After observing Galen, I was able to concludewithin an acceptable level of probability that Galen does not communicateverbally to any recognizable effect.
...
I can't do that want-board with Galen anymore.
...
Mr. Bottacci,
I'm sorry that I could not convince you to withdraw the conditions you setregarding Galen's home and his upcoming funding review. I know that what we allwant is what's best for Galen, and that sometimes these decisions are difficultto make.
...
One,I was wrong about Galen and the want-board.
...
Mr. Bottacci,
I'm happy to inform you that the matter of the backyard has been resolved, andalso that Galen has begun to express his desires in a clear and unequivocalmanner.
...
Spent alot of time--most of the past week--here with Galen and the want-board, tryingto get Galen to learn the thing before vacation (even though he stilldidn't know where he wanted to go) because after vacation, he said, it would betoo late. Let me tell you, that man has patience. He tried everything you canthink of. He begged Galen to pay attention. But Galen never did anythingbut stare out the back window at that old backyard.
At the end of it I didn't know who I felt more sorry for, Galen or Lance.
...
I swear Galen must have been counting along, because theinstant I put that key in the lock and lock went `click' he popped from hischair and sped right across the room as fast as I have ever seen him run,grinning and laug
