Is New Brunswick violating the UN Convention on the Rights of Persons with Disabilities (CPRD) by sending Adults with Autism Spectrum Disorders to Campbellton to live out their lives in the Regional Psychiatric Hospital as far as possible from the vast majority of families and communities in NB and as far as possible from NB's internationally recognized autism expertise? The Campbellton Hospital is on NB's northern border a sparsely populated area of NB and the much more densely populated south as shown on this 2001 Census based Map of NB Population Density produced in 2002 by Statistics Canada Geography Division.
In New Brunswick very substantial gains have been made with respect to the provision of health, education and social services to persons with Autism Spectrum Disorders. Our early autism intervention program has achieved national AND international recognition based on the excellent work of the UNB-CEL Autism program at UNB Fredericton. Teacher aides and Resource Teachers have received autism training from the UNB-CEL program and the Stan Cassidy Centre Autism team provides autism consultations up to age 19. NOTHING however has been done to provide for professional, decent, humane autism residential care and treatment for adults.
Paul McDonnell Ph.D., and a Canada wide leader in developing evidence based autism treatment, was a key player in establishing the program which forms the basis of these services and he also, in consultation with parent advocates, developed the NB Autism Spectrum Village Proposal which was presented to the Gallant Government, then Social Development Minister Cathy Rogers, in 2015. The "Village Proposal" would provide for the establishment of an Autism Centre in Fredericton, the home of NB's autism expertise and centrally located. The centre would provide training and oversight for staff in homes around the PNB close to families in all parts of the province. It would also provide, from its central location, permanent residential care for those most challenged by autism and related conditions.
Instead of taking steps to develop the NB Autism Spectrum Village proposal the PNB has continued to send adults with autism to Campbellton a sparsely populated, with a declining population base, area on NB's Northern border far from the vast majority of families in the south. It is also far from Fredericton where NB has, driven by the initiatives of academics and parents developed our internationally recognized autism expertise.
Canada, as shown on this UN Map, has signed and ratified the UN Convention on the Rights of Persons with Disabilities.
Article 25 - Health
States Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. States Parties shall take all appropriate measures to ensure access for persons with disabilities to health services that are gender-sensitive, including health-related rehabilitation. In particular, States Parties shall:
a) Provide persons with disabilities with the same range, quality and standard of free or affordable health care and programmes as provided to other persons, including in the area of sexual and reproductive health and population-based public health programmes;
b) Provide those health services needed by persons with disabilities specifically because of their disabilities, including early identification and intervention as appropriate, and services designed to minimize and prevent further disabilities, including among children and older persons;
c) Provide these health services as close as possible to people’s own communities, including in rural areas;
d) Require health professionals to provide care of the same quality to persons with disabilities as to others, including on the basis of free and informed consent by, inter alia, raising awareness of the human rights, dignity, autonomy and needs of persons with disabilities through training and the promulgation of ethical standards for public and private health care;
e) Prohibit discrimination against persons with disabilities in the provision of health insurance, and life insurance where such insurance is permitted by national law, which shall be provided in a fair and reasonable manner;
f) Prevent discriminatory denial of health care or health services or food and fluids on the basis of disability.
States Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. States Parties shall take all appropriate measures to ensure access for persons with disabilities to health services that are gender-sensitive, including health-related rehabilitation. In particular, States Parties shall:
a) Provide persons with disabilities with the same range, quality and standard of free or affordable health care and programmes as provided to other persons, including in the area of sexual and reproductive health and population-based public health programmes;
b) Provide those health services needed by persons with disabilities specifically because of their disabilities, including early identification and intervention as appropriate, and services designed to minimize and prevent further disabilities, including among children and older persons;
c) Provide these health services as close as possible to people’s own communities, including in rural areas;
d) Require health professionals to provide care of the same quality to persons with disabilities as to others, including on the basis of free and informed consent by, inter alia, raising awareness of the human rights, dignity, autonomy and needs of persons with disabilities through training and the promulgation of ethical standards for public and private health care;
e) Prohibit discrimination against persons with disabilities in the provision of health insurance, and life insurance where such insurance is permitted by national law, which shall be provided in a fair and reasonable manner;
f) Prevent discriminatory denial of health care or health services or food and fluids on the basis of disability.
Article 25 states that the state parties to the (CRPD) recognize the health care rights of persons with disabilities including in paragraph 25(b) health services needed by persons specifically because of their disabilities. New Brunswick has been an internationally recognized leader in developing Autism Spectrum Disorder specific health treatment, ABA, Applied Behaviour Analysis. That expertise has been developing at the centrally located, UNB-CEL Autism program and the Stan Cassidy Autism team in Fredericton which is in itself part of NB's larger population base in south and central NB.
Article 25(c) of the Convention on the Rights of Persons with Disabilities recognizes that these health services should be provided "as close as possible to persons own communities, including rural areas." In NB compliance with Article 25(c) has been spurned. For political reasons adults are sent to Campbellton far from the vast majority of the NB population and the communities, including families, of the adults with Autism Spectrum Disorders.
There is no legitimate reason to be sending NB Adults with Autism Spectrum Disorders to Campbellton. Those who are sent to that remote location are most likely to be severely affected by Autism and related conditions including Intellectual Disability, Depression and Epilepsy. lack of autism expertise in Campbellton and distance from family and community can only aggravate those serious, life shortening conditions. High quality studies reviewed in 2015 by the Autistica UK research charity summarized the findings which indicated that persons with Autism and no intellectual disability have a 9 year shorter life expectancy than persons in the general population with depression and suicide being the primary cause. The studies indicated a 30 year shorter life expectancy for persons with Autism Disorder and Intellectual Disability with epileptic seizures being the primary trigger.
There has never been a good reason to send youths and adults with autism disorder to the Regional Psychiatric Hospital in Campbellton or for that matter to live on general hospital wards around the province or in one case to the Miramichi Youth Correctional centre. (The youth in question had no criminal conviction).
It is time to follow the principles enunciated in a 2010 CBC interview of Paul McDonnell and develop the NB Autism Spectrum Village Proposal presented by Dr. McDonnell, accompanied by myself and fellow advocate Cynthia Bartlett to the NB government in 2015 a proposal which to my knowledge did not receive serious consideration.
Our adult population with autism disorders, including my own son, should not be used as political chips to keep MLAs in power or to try and stem the population decline of towns founded on declining natural resource industries.
It is time to fully respect the rights of persons with Adult Autism Spectrum Disorders as reflected in Article 25 of the UN Convention of the Rights of Persons with Disabilities (CPRD).
It is time, which I ask of each of our NB elective representatives to respect the CPRD Article 25, to respect our autistic youths and adults and build the autism centre and network of living facilities around the province envisioned in the 2015 NB Autism Spectrum Village proposal.
