In NB the discrimination against adults with severe autism and related challenges including the 40-50% of persons on the autism spectrum with intellectual disabilities, many of whom suffer from migraine pain, seizures and an average life expectancy 30 years shorter than persons in the general population continues yet again. Two PNB financed bodies, Autism Connections Fredericton and the Premiers Council on Disabilities, have conducted a survey of adult autism issues in NB without addressing the realities facing those with severe autism and intellectual disability who constitute 40-50% of the autism spectrum population. Instead the their needs were expressly excluded by the authors of the Autism Connections Fredericton Adult Autism Tour report. Meanwhile existing discussions between parent advocates and government concerning the need for an Autism Residential Care and Treatment Village were held in abeyance for 2 years.
Parents of children with autism and related conditions acting as the Autism Society of New Brunswick made a written submission on adult autism residential care issues in 2008. Among other points we requested consideration of an autism village network for residential care. It was ignored.
The 30 year premature mortality rate faced by adults with autism and intellectual disability and other harsh realities facing many adults with autism and ID including epilepsy and the seizure related migraine pain shown in my son's pictures below are also ignored in the Autism Connections Fredericton Adult Autism Tour Report. In fact the harsh realities facing my son and others with severe autism and related disorders are intentionally excluded and "autism" is misrepresented by the Tour Report. The Premiers Council on Disabilities, like the Tour itself, is financed by the PNB and the Council Chair has accepted the discriminatory and harmful report without providing any meaningful analysis of why the key points concerning autism were accepted.
The pictures that follow show the seizure related migraine pain that can occur very suddenly with my son, and others, who suffer from severe autism, intellectual disability and epilepsy very common matters for many with autism and intellectual disability which are not discussed in either the ACF Adult Autism Tour report or the Premiers Council on Disabilities Disability Action Plan July 2020:
The last 2 years have seen no significant developments in adult autism residential care and treatment as governments awaited the Adult Autism Tour Report conclusions which dragged on for 2 years and produced nothing but a mess of misinformation and which suppressed public knowledge of the harsh realities facing adults with severe autism and related conditions.
The loss of those 2 years constitutes harm and discrimination against autistic adults with severe autism by the Autism Connections Fredericton and the Premier's Council on Disabilities as does the total exclusion from the "Tour Report" of any discussion of the serious challenges facing adults with severe autism and related disorders in NB."
Parents of children with autism and related conditions acting as the Autism Society of New Brunswick made a written submission on adult autism residential care issues in 2008. Among other points we requested consideration of an autism village network for residential care. It was ignored.
The 30 year premature mortality rate faced by adults with autism and intellectual disability and other harsh realities facing many adults with autism and ID including epilepsy and the seizure related migraine pain shown in my son's pictures below are also ignored in the Autism Connections Fredericton Adult Autism Tour Report. In fact the harsh realities facing my son and others with severe autism and related disorders are intentionally excluded and "autism" is misrepresented by the Tour Report. The Premiers Council on Disabilities, like the Tour itself, is financed by the PNB and the Council Chair has accepted the discriminatory and harmful report without providing any meaningful analysis of why the key points concerning autism were accepted.
The pictures that follow show the seizure related migraine pain that can occur very suddenly with my son, and others, who suffer from severe autism, intellectual disability and epilepsy very common matters for many with autism and intellectual disability which are not discussed in either the ACF Adult Autism Tour report or the Premiers Council on Disabilities Disability Action Plan July 2020:
The last 2 years have seen no significant developments in adult autism residential care and treatment as governments awaited the Adult Autism Tour Report conclusions which dragged on for 2 years and produced nothing but a mess of misinformation and which suppressed public knowledge of the harsh realities facing adults with severe autism and related conditions.
The loss of those 2 years constitutes harm and discrimination against autistic adults with severe autism by the Autism Connections Fredericton and the Premier's Council on Disabilities as does the total exclusion from the "Tour Report" of any discussion of the serious challenges facing adults with severe autism and related disorders in NB."
In 2015 before Dr. Paul McDonnell focused his autism efforts more and more on the government financed and policy restricted Autism Connections Fredericton he attended a meeting organized by me with then Social Development Minister Kathy Rogers with myself and fellow autism parent advocate Cynthia Bartlett in attendance. Dr. McDonnell presented his autism village network proposal to Minister Rogers with some input from myself and Ms. Bartlett. I was optimistic after the meeting but we never heard anything further.
In 2019 myself and 2 autism parent advocates, along with former cabinet Minister Tony Huntjens, met with Minister Dorothy Shephard. and again spoke about adult autism needs and the Autism Village Network proposal. We have received no response in respect of our discussion in that meeting.
In 2019 myself and 2 autism parent advocates, along with former cabinet Minister Tony Huntjens, met with Minister Dorothy Shephard. and again spoke about adult autism needs and the Autism Village Network proposal. We have received no response in respect of our discussion in that meeting.
In the meantime the ACFredericton Adult Autism Tour was organized by Rick Hutchins who has forged a career in seeking government projects but no experience as an autism parent and no formal education that I am aware of with respect to autism and related conditions. Dr McDonnell joined him in that effort to my serious disappointment.
The autism tour was a waste of time at best. Parents do not need Rick Hutchins to tell us that respite care is an issue facing many families with an autistic member. In fact that was an issue referenced in the 2008 ASNB Youth and Adult Residential Care and Treatment report submitted to the PNB on January 30 2008. We have also known for 12 years that serious consideration had to be given by PNB to establish a humane and evidence based adult residential care and treatment. We also brought that to the attention of government in the 2008 ASNB Report along with a request for an Autism Village Network to address those needs.
The government financed Premiers Council on Disabilities has rubber stamped the Adult Autism Tour Report which was financed by the PNB and conducted by the Autism Connections Fredericton which is also itself largely financed by government. The ACF like all PNB financed community centres must comply with the policies dictated by the PNB including public statements they can make.
Parent advocates of adults with severe autism disabilities who had been involved in advocating for early autism programs, autism trained aides in the schools and reversal of the decision to close the Stan Cassidy Centre, did not have their issues addressed in the Report. Adults with severe autism, adults who can not speak for themselves and who speak through their parents, were thereby dismissed or ignored in this process.
The ACFredericton Tour and its embrace by the Premiers Council Action Disability Plan July 2020 has caused harm and discriminated against adults with severe autism and related disorders by misrepresenting "autism", burying the realities of those with severe autism and causing 2 more years of delay or excuses for delay for 2 more years by the Province of New Brunswick.
The autism tour was a waste of time at best. Parents do not need Rick Hutchins to tell us that respite care is an issue facing many families with an autistic member. In fact that was an issue referenced in the 2008 ASNB Youth and Adult Residential Care and Treatment report submitted to the PNB on January 30 2008. We have also known for 12 years that serious consideration had to be given by PNB to establish a humane and evidence based adult residential care and treatment. We also brought that to the attention of government in the 2008 ASNB Report along with a request for an Autism Village Network to address those needs.
The government financed Premiers Council on Disabilities has rubber stamped the Adult Autism Tour Report which was financed by the PNB and conducted by the Autism Connections Fredericton which is also itself largely financed by government. The ACF like all PNB financed community centres must comply with the policies dictated by the PNB including public statements they can make.
Parent advocates of adults with severe autism disabilities who had been involved in advocating for early autism programs, autism trained aides in the schools and reversal of the decision to close the Stan Cassidy Centre, did not have their issues addressed in the Report. Adults with severe autism, adults who can not speak for themselves and who speak through their parents, were thereby dismissed or ignored in this process.
The ACFredericton Tour and its embrace by the Premiers Council Action Disability Plan July 2020 has caused harm and discriminated against adults with severe autism and related disorders by misrepresenting "autism", burying the realities of those with severe autism and causing 2 more years of delay or excuses for delay for 2 more years by the Province of New Brunswick.
So many years wasted waiting for the government of New Brunswick to provide treatment for and a residential care facility for adults with autism. Is there a bias against adults with autism? If not, what IS the reason behind ignoring this issue year after year after year? Government inaction is shameful! Signed: Meris K Brookland, Fredericton, New Brunswick
ReplyDeleteThe bias is against adults with severe autism and related conditions. 40-50% with autism and intellectual disability have an average life expectancy of 30 years less than persons in the general population because of high lives of autism and seizure triggered deaths *SUDEP. Many also suffer from seizure related migraine pain as you see in the pictures of my son.
Deletei was labeled autistic yet I was able to finish a politicalsciecnedegree inSTU i can speak every UN language arabic chinese english french russian spanish i am the state winner of new jersey in geography I am a published writer i did my masters IN international human rights law in Queens Univeristy belfast I work for the International Criminal Court i started my own human rights nGO in South Africa married a beautiful Malawian model I think I turned out just fine
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