WILL NB "HEALTH CARE REFORM" ADDRESS SEVERE AUTISM ADULT CARE NEGLECT IN NEW BRUNSWICK?
HAROLD L DOHERTY <HLDOHERTY5463@GMAIL.COM>
to Blaine.Higgs, Hugh.Flemming, Dorothy.Shephard, Ernie, Stephen, Cathy.Rogers, David, kris.austin, justin.trudeau, Jenica.Atwin, Patty.Hajdu, David.Lametti, ombud, mary.wilson, Andrea.AndersonMason, Brian, Terry, Jeremy, Laura, Jessica.ng, Aidan, cbcnb, city, tjnewsroom, info, Michael.Palmer, ME
Honourable Premier Higgs et al.
I have been listening with interest to your statements in support of your proposed health care plan which to date at least appears to be confined to elimination of night time hours of operation at emergency departments of several rural hospitals. I ask you, and the opposition parties, if they form government at any time in the future, to consider as part of Healthcare Reform the closure of the Autism Unit of the Restigouche Hospital Centre and the opening of an Adult Autism Centre in Fredericton, which is both centrally located and the location of current autism developments such as the Stan Cassidy Autism Team, the UNB-CEL Autism component of the UNB and the Department of Psychology at UNB which provides the student base to assist in some of these efforts.
In making this request I understand that many and perhaps most of you do not know me and will not take the time to consider my recommendation. For your information I have been advocating for evidence based autism services in NB, at all ages of persons with autism disorders, for more than 20 years. I am the holder of a Queen Elizabeth II Diamond Jubilee Medal for my autism advocacy and I was presented with an Oscar for Autism as a parent advocate by Paul McDonnell Ph D, in an event at the Delta Fredericton which was attended by ex premiers Bernard Lord and Shawn Graham both of whom I took the opportunity to thank those premiers for their efforts on early evidence based intervention, autism/ABA trained school aides and reversal of the decision to close the Stan Cassidy Autism team. I also worked with the late Andy Scott who initiated a private members motion for the development by the federal government of a National Autism Strategy. The current federal government is making rumblings about enacting such a strategy as it did also in the 2015 elections.
In all these activities and accomplishments I learned much about the realities of autism spectrum disorders including and especially the huge divide between the needs of those with high functioning skills and cognitive abilities who were previously described under the "Aspergers" label rather than autism and those, like my son who have severe autism and profound developmental delay. This group of severely challenged individuals comprise 50% of the autism spectrum according to the World Health Organization. The average life expectancy of persons in this group is 30 years shorter than persons in the general population. It is persons in this group that need the most significant health care assistance which was supposedly being provided at the Restigouche Health Centre but was not in fact provided at all as disclosed by the impressive investigation by the Ombud team which resulted in the "Failure to Protect" report which documented the neglect and abuse of patients and residents at the Restigouche Hospital Centre.
More information relevant to the complete lack of value of the Restigouche Health Centre was reported by CBC NB reporter Karissa Donkin who obtained via access to information request reports of serious, rampant disciplinary issues at the RHC in her very aptly titled report "Violence and threats, negligence, insubordination led to discipline at troubled hospital", last updated August 7, 2019.
Parent advocates have long sought an alternative to the RHC and other failed locations for youth and adults with severe autism challenges to receive appropriate health and residential care and treatment. The beginning of the exposure of this history takes place in October 2005 as set out in the accompany Toronto Star article. You will also note that I am quoted in that article as an autism advocate. I mention this to prove how long I have been fighting, together with other parent advocates, for appropriate, human, professional residential care and treatment for youth and adults with severe autism challenges.
Apart from my involvement in these autism issues I am also a practicing lawyer and it is my respectful opinion that the placement of adults like my son, once I can no longer provide care for him in the RHC would constitute of articles 25 and 26 of the UN Convention of the Rights of Persons with Disabilities. I will not attempt to make a presentation on the international legal aspects of this matter in this email. I have long encouraged my fellow parent advocates to avoid the courts and seek political dialogue to make gains for provision of autism services. At this point in time though given the disclosures by the Ombud team in Failure to Report and by the discipline issues reported by the reporting of CBC reporter Karissa Donkin it is clear that there is no legitimate basis to keep sending the adults with severe autism to the Restigouche Hospital Centre. It should be noted that UN CRPD optional protocol was signed by the Canadian government was signed in 2018 which provides ultimate authority to address these issues to international decision.
I acknowledge that I am considering invoking the UNCPRD and the optional protocol but I still believe unless these concerns are once again dismissed that discussion is the best way to proceed. I hope that the addressees to this email and their colleagues will consider closing the HRC autism unit and expanding the existing facilities in centrally located Fredericton which has been gathering some autism expertise and will have no difficulty attracting autism professional expertise.
I would also ask the governments of NB to once again consider the Autism Village Model as a provision for adult autism residential care and treatnment. The model was first mentioned in the Autism Society New Brunswick submission to government in 2008. That submission followed a survey conducted by ASNB. The The model was developed in more detail by Professor Emeritus Paul McDonnell in his 2015 paper on the Autism Village which was presented to then Social Development Minister Cathy Rogers. Professor McDonnell was accompanied in making that submission by another parent advocate Cynthia Bartlett who like myself had many years of personal and public involvement with adult autism issues particularly the 50% of persons with autism and intellectual disability.
Professor McDonnell to which I have linked you above first summarized the Autism Village concept in a 2010 CBC interview with Dan McHardie:
Paul McDonnell, September, 2010, CBC Interview with Dan McHardie (emphasis added).
"Our greatest need at present is to develop services for adolescents and adults.
What is needed is a range of residential and non-residential services and these services need to be staffed with behaviourally trained supervisors and therapists. In the past we have had the sad spectacle of individuals with autism being sent off to institutional settings such as the Campbellton psychiatric hospital, hospital wards, prisons, and even out of the country at enormous expense and without any gains to the individual, the family or the community.
We need an enhanced group home system throughout the province in which homes would be linked directly to a major centre that could provide ongoing training, leadership and supervision.
That major centre could also provide services for those who are mildly affected as well as permanent residential care and treatment for the most severely affected.
Such a secure centre would not be based on a traditional "hospital" model but should, itself, be integrated into the community in a dynamic manner, possibly as part of a private residential development.
The focus must be on education, positive living experiences, and individualized curricula.
The key to success is properly trained professionals and staff."
The Weber Report provided no credible plan to overcome the difficulties of attracting autism specific expertise, or the employee discipline issues at the Restigouche. It did not even touch on the impact on families of being separated from their family members sent to our northern border 4-5 hours distant from the bulk of the NB population. There is no credible basis for continuing to banish adults with severe autism so far from families and so far from NB autism expertise. It is a well known "secret" that it is done for economic development reasons.
I hope that our political leadership is open to changing its mind on this important issue. I hope that the resort to litigation, to the UN Convention on the Rights of Persons with Disabilities does not continue to be flagrantly violated in the name of economic development in the North. I will be happy to discuss this matter with anyone interested or if you prefer i will be happy to debate these matters.
Respectfully,
Harold L Doherty LL. B.
Conor's Dad
Queen Elizabeth II Diamond Jubilee Medal Recipient (Autism Advocacy)
In making this request I understand that many and perhaps most of you do not know me and will not take the time to consider my recommendation. For your information I have been advocating for evidence based autism services in NB, at all ages of persons with autism disorders, for more than 20 years. I am the holder of a Queen Elizabeth II Diamond Jubilee Medal for my autism advocacy and I was presented with an Oscar for Autism as a parent advocate by Paul McDonnell Ph D, in an event at the Delta Fredericton which was attended by ex premiers Bernard Lord and Shawn Graham both of whom I took the opportunity to thank those premiers for their efforts on early evidence based intervention, autism/ABA trained school aides and reversal of the decision to close the Stan Cassidy Autism team. I also worked with the late Andy Scott who initiated a private members motion for the development by the federal government of a National Autism Strategy. The current federal government is making rumblings about enacting such a strategy as it did also in the 2015 elections.
In all these activities and accomplishments I learned much about the realities of autism spectrum disorders including and especially the huge divide between the needs of those with high functioning skills and cognitive abilities who were previously described under the "Aspergers" label rather than autism and those, like my son who have severe autism and profound developmental delay. This group of severely challenged individuals comprise 50% of the autism spectrum according to the World Health Organization. The average life expectancy of persons in this group is 30 years shorter than persons in the general population. It is persons in this group that need the most significant health care assistance which was supposedly being provided at the Restigouche Health Centre but was not in fact provided at all as disclosed by the impressive investigation by the Ombud team which resulted in the "Failure to Protect" report which documented the neglect and abuse of patients and residents at the Restigouche Hospital Centre.
More information relevant to the complete lack of value of the Restigouche Health Centre was reported by CBC NB reporter Karissa Donkin who obtained via access to information request reports of serious, rampant disciplinary issues at the RHC in her very aptly titled report "Violence and threats, negligence, insubordination led to discipline at troubled hospital", last updated August 7, 2019.
Parent advocates have long sought an alternative to the RHC and other failed locations for youth and adults with severe autism challenges to receive appropriate health and residential care and treatment. The beginning of the exposure of this history takes place in October 2005 as set out in the accompany Toronto Star article. You will also note that I am quoted in that article as an autism advocate. I mention this to prove how long I have been fighting, together with other parent advocates, for appropriate, human, professional residential care and treatment for youth and adults with severe autism challenges.
Apart from my involvement in these autism issues I am also a practicing lawyer and it is my respectful opinion that the placement of adults like my son, once I can no longer provide care for him in the RHC would constitute of articles 25 and 26 of the UN Convention of the Rights of Persons with Disabilities. I will not attempt to make a presentation on the international legal aspects of this matter in this email. I have long encouraged my fellow parent advocates to avoid the courts and seek political dialogue to make gains for provision of autism services. At this point in time though given the disclosures by the Ombud team in Failure to Report and by the discipline issues reported by the reporting of CBC reporter Karissa Donkin it is clear that there is no legitimate basis to keep sending the adults with severe autism to the Restigouche Hospital Centre. It should be noted that UN CRPD optional protocol was signed by the Canadian government was signed in 2018 which provides ultimate authority to address these issues to international decision.
I acknowledge that I am considering invoking the UNCPRD and the optional protocol but I still believe unless these concerns are once again dismissed that discussion is the best way to proceed. I hope that the addressees to this email and their colleagues will consider closing the HRC autism unit and expanding the existing facilities in centrally located Fredericton which has been gathering some autism expertise and will have no difficulty attracting autism professional expertise.
I would also ask the governments of NB to once again consider the Autism Village Model as a provision for adult autism residential care and treatnment. The model was first mentioned in the Autism Society New Brunswick submission to government in 2008. That submission followed a survey conducted by ASNB. The The model was developed in more detail by Professor Emeritus Paul McDonnell in his 2015 paper on the Autism Village which was presented to then Social Development Minister Cathy Rogers. Professor McDonnell was accompanied in making that submission by another parent advocate Cynthia Bartlett who like myself had many years of personal and public involvement with adult autism issues particularly the 50% of persons with autism and intellectual disability.
Professor McDonnell to which I have linked you above first summarized the Autism Village concept in a 2010 CBC interview with Dan McHardie:
Paul McDonnell, September, 2010, CBC Interview with Dan McHardie (emphasis added).
"Our greatest need at present is to develop services for adolescents and adults.
What is needed is a range of residential and non-residential services and these services need to be staffed with behaviourally trained supervisors and therapists. In the past we have had the sad spectacle of individuals with autism being sent off to institutional settings such as the Campbellton psychiatric hospital, hospital wards, prisons, and even out of the country at enormous expense and without any gains to the individual, the family or the community.
We need an enhanced group home system throughout the province in which homes would be linked directly to a major centre that could provide ongoing training, leadership and supervision.
That major centre could also provide services for those who are mildly affected as well as permanent residential care and treatment for the most severely affected.
Such a secure centre would not be based on a traditional "hospital" model but should, itself, be integrated into the community in a dynamic manner, possibly as part of a private residential development.
The focus must be on education, positive living experiences, and individualized curricula.
The key to success is properly trained professionals and staff."
The Weber Report provided no credible plan to overcome the difficulties of attracting autism specific expertise, or the employee discipline issues at the Restigouche. It did not even touch on the impact on families of being separated from their family members sent to our northern border 4-5 hours distant from the bulk of the NB population. There is no credible basis for continuing to banish adults with severe autism so far from families and so far from NB autism expertise. It is a well known "secret" that it is done for economic development reasons.
I hope that our political leadership is open to changing its mind on this important issue. I hope that the resort to litigation, to the UN Convention on the Rights of Persons with Disabilities does not continue to be flagrantly violated in the name of economic development in the North. I will be happy to discuss this matter with anyone interested or if you prefer i will be happy to debate these matters.
Respectfully,
Harold L Doherty LL. B.
Conor's Dad
Queen Elizabeth II Diamond Jubilee Medal Recipient (Autism Advocacy)
No comments:
Post a Comment