New Brunswick NEEDS An Adult Autism Center Yesterday!!!

NB needs an adult autism centre. Autism for some is a serious disorder with major challenges. Some adults get sent to Campbellton a small town with a shrinking population on our Northern Border. Some live in hospital wards. 

A centre in Fredericton could provide permanent residential care and treatment for those most in need, in a central location near NB's autism expertise, and oversight and training for a network of group homes with autism trained staff in communities around the province. NB has to stop drinking empty community cliches and start providing real, evidence based facilities with trained staff for all persons in NB with autism who need such accommodation.

The article which follows is an open access NIMH abstract to which I add nothing except to say that many with autism, including my son, also suffer from epilepsy. It is not to be taken lightly and for those who need life time care the care should be properly trained and oversight should be careful and complete. The full article is also available free on line and in pdf format.

Recognizing and preventing epilepsy-related mortality

A call for action

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1. Correspondence to Dr. Devinsky: od4@nyu.edu

1. Published online before print December 16, 2015, doi: http:/​/​dx.​doi.​org/​10.​1212/​WNL.​0000000000002253Neurology February 23, 2016 vol. 86 no. 8 779-786

• Free via Open Access: OA
• Abstract
• OA Full Text
• Full Text (PDF)

ABSTRACT

Epilepsy is associated with a high rate of premature mortality from direct and indirect effects of seizures, epilepsy, and antiseizure therapies. Sudden unexpected death in epilepsy (SUDEP) is the second leading neurologic cause of total lost potential life-years after stroke, yet SUDEP may account for less than half of all epilepsy-related deaths. Some epilepsy groups are especially vulnerable: individuals from low socioeconomic status groups and those with comorbid psychiatric illness die more often than controls. Despite clear evidence of an important public health problem, efforts to assess and prevent epilepsy-related deaths remain inadequate. We discuss factors contributing to the underestimation of SUDEP and other epilepsy-related causes of death. We suggest the need for a systematic classification of deaths directly due to epilepsy (e.g., SUDEP, drowning), due to acute symptomatic seizures, and indirectly due to epilepsy (e.g., suicide, chronic effects of antiseizure medications). Accurately estimating the frequency of epilepsy-related mortality is essential to support the development and assessment of preventive interventions. We propose that educational interventions and public health campaigns targeting medication adherence, psychiatric comorbidity, and other modifiable risk factors may reduce epilepsy-related mortality. Educational campaigns regarding sudden infant death syndrome and fires, which kill far fewer Americans than epilepsy, have been widely implemented. We have done too little to prevent epilepsy-related deaths. Everyone with epilepsy and everyone who treats people with epilepsy need to know that controlling seizures will save lives.

FOOTNOTES

• Go to Neurology.org for full disclosures. Funding information and disclosures deemed relevant by the authors, if any, are provided at the end of the article. The Article Processing Charge was paid by FACES.

• Received July 1, 2015.
• Accepted in final form October 29, 2015.

• © 2015 American Academy of Neurology

This is an open access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives License 4.0 (CC BY-NC-ND), which permits downloading and sharing the work provided it is properly cited. The work cannot be changed in any way or used commercially.

Adults with Severe Autism and Related Disorders are Invisible to NB Government

In New Brunswick adults, like my son Conor, adults with severe autism, intellectual disability (40-50% of persons with autism) and epilepsy (20-40% of persons with autism) do not share in our supposedly inclusive community.  They are largely invisible, as in the images on the right of my son below,  to government,  politicians and civil servants. They are not seen as the wonderful human beings that are loved by family as is my son, who would benefit from frequent family contact when they can no longer be cared for 24/7 at home.

There are general group homes and individualized apartment arrangements with some supervision for those who are higher functioning.  As severity increases the likelihood of life spent in the Restigouche Regional Psychiatric Hospital in Campbellton on our northern border with Quebec increases.  In the past 2 persons with severe autism challenges were sent out of the country to Spurwink Maine for treatment for a number of years at $2-300,000 per person per year. Some have lived in general hospital wards. 

Some of our politicians enjoy photo op walks with young autistic children and cutting the cake at events at autism community centres that provide no treatment or care.  They show little interest in providing the long term, in some cases permanent, residential care and treatment facilities that adults with autism will need.

In a conversation with the new Minister of Child and Family Services,  or Social Development or Families and Children or whatever they are calling their Department today (they seem to spend more time thinking up new names for their department then addressing needs of adult autistic persons in our province) he seemed to think  Restigouche Psychiatric Hospital is all that is needed to fulfill their needs.  He didn't seem to think that it's location many hours drive from most NB families was a big deal. In any event that  was some kind of justice for those in the North who travel further south for various reasons.  And in a complete confession of ignorance of autism realities particularly severe autism realities, he didn't think autism required any specific treatments or accommodations. The Minister doesn't see the challenges of severely autistic adults.  For him, my son and other severely autistic adults are invisible.

As the parent of a 20 year old severely challenged autistic son and a long time public autism advocate for services such as early intervention, autism trained school aides and resource teachers and reinstatement of the Stan Cassidy autism service,  I beg to differ with Minister Horsman. But he needn't accept my word on it being a mere parent who has lived with autism 24/7 for 20 years.  He can review the principles espoused by NB autism expert Paul McDonnell a Professor Emeritus (Psychology) and Clinical Psychologist who articulated the need over 6 years ago for an autism network.

McDonnell,  in a CBC interview and analysis over 6 years ago, stated that an autism center that could provide long term, permanent care for those with severe autism and oversight to autism specific group homes around the province was needed to address the needs of autistic adults with varying levels of severity:

“Autistic adults are often sent to privately run group homes or in extreme cases, sent to psychiatric care in Campbellton or  out of province.

“It’s fairly expensive to put people in group homes and if you have to send people out of the province then it’s much, much more expensive,” McDonnell said.

“If they’re placed far away from their families,  that creates a lot of hardship as well. A lot of people aren’t functioning at the level they could. They’re simply not having the quality of life they should be having.”

McDonnell thinks the province needs to train people to be prepared to deal with adults with severe behavioural challenges.

“They should have stimulating recreational, educational programs. That is absolutely essential.

“That’s what we need to aim towards is setting up a system where we have some really well-trained people.”

 NB has been developing increasing expertise in centrally located Fredericton.  It is time to get it done and time to find some political leadership that will take an interest in the real challenges of autistic adults.

New Brunswick needs an adult autism center ... yesterday

People Have Moved TO NB? Seriously? Yes! For Early Autism Intervention Services for their CHILDREN! We Can Do It For Autistic ADULTS Too!!

Unlike adult autism services where New Brunswick has failed to take comprehensive action  to provide professional, accessible adult autism treatment and services the PNB has received recognition for its early intervention services developed to the point that familes from elsewere have moved to New Brunswick so their children with autism disorders can receive evidence based early intervention. NB has developed early intervention and school based services for young persons with autism. Given the developed autism expertise why has NB refused to take action to develop adult autism care and treatment, particularly for those most severely impaired by their autism and related disorders?

Early intervention services in NB were featured in a Toronto Star interview with the Forsyth family who moved here from Toronto so their children could access New Brunswick's early intensive behavioural intervention.  

"It had taken months of referrals, paperwork and lineups just to get the boys assessed. Then came worse news: they would have to wait at least two years for provincially-funded treatment in Toronto.

Private therapy, which would cost tens of thousands of dollars a year, was out of the question for Forsyth and her husband Erik, a steelworker in the highrise building industry.

So they opted for a radical solution. Last winter, they packed up their three preschoolers and moved to New Brunswick after Forsyth learned the wait times there would be a couple of months.

A year later, Forsyth, 29, is homesick, but not sorry.

“It was either that or keep waiting in Toronto,” she says over the phone from the family’s rented duplex south of Moncton. “I couldn’t do that, it was too hard.”

Since last May, her 3-year-old sons have each been receiving 20 hours a week of intensive behavioural intervention delivered by two therapists in their home and funded by New Brunswick."

There have been informal reports of other families with autistic children moving to New Brunswick including some military families who sought postings to Base Gagetown so their children could access autism services. Further NB autism expert Paul McDonnell  noted years ago in a 2010 CBC analysis   that New Brunswick can be a leader in autism services (September 24, 2010)  David Celiberti of the Association for Science in Autism Treatement responded to the title in his commentary on the NB autism intervention model: ASAT Responds to Canadian CBC’s “N.B. Can Be a Leader in Autism Services (October 23, 2010)”.  In that article Dr. Celiberti stated:

"I read with great interest your recent article about the state of services in New Brunswick (“N.B. Can Be a Leader in Autism Services,” September 14, 2010). I do beg to differ about the title of the piece. New Brunswick is already a leader. To have amassed 800 trained agents of change in six years is nothing short of incredible and inspiring, particularly given the diversity of your province with respect to geography and language. Other Canadian provinces can look to New Brunswick for an exemplary model of how things could and should be for children with autism and their families."

New Brunswick has achieved acclaim for its early intervention and school autism services.  As one of the parents involved in advocating for those services I am very pleased but I am extremely disappointed with the lack of effort by our provincial governments with respect to providing the necessary adult autism care and treatment. In his September 24, 2010 article Professor Emeritus (Psychology) and Clinical Psychologist Paul McDonnell stated:

"What remains to be done? 

While we need to celebrate the achievements to date, we need to make a commitment to the needs of all families and all age groups. 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 behaviorally trained supervisors and therapists. Some jurisdictions in the United States have outstanding facilities that are in part funded by the state and provide a range of opportunities for supervised and independent living for individuals with various disabilities. 

The costs of not providing such services can be high financially and in terms of human costs. As a psychologist in private practice I know there are large numbers of older individuals who are diagnosed later in life with Asperger’s Syndrome that have no access to professional services of any kind. 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 can do much, much better. 

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. 

In conclusion, New Brunswick has one of the most advanced intervention programs in Canada for children who are on the autism spectrum and the benfits for the children and their families are exceptional. 

Many families have moved to New Brunswick for services and, as well, many professionals have moved here because of the opportunities provided by this program."

(Bold highlighting added - HLD)

New Brunswick established itself as a leader in early intervention and school autism services in Canada.  NB governments since then though have refused to develop the adult autism center and group home system as recommended by NB autism expert Paul McDonnell in his 2010 CBC analysis.  Money is not really the issue in my humble opinion.  Some costs can be recovered by inefficient and inadequate ad hoc services currently provided.  Hospitals, schools and other facilities scheduled for closing could be used to build the center and group homes.  Everyone except the most unfortunate lives in buildings. It is not generally the structure that makes a building undesirable it is how it is used and what kinds of services are provided in the building and with what kind of oversight that could be adapted to provide autism treatment and for those most in need long term, permanent in some cases, residential care for those most in need.  Properly trained professionals and staff could make it happen by providing security, education, recreation and positive living experiences based on the inviduals living there and  incorporated in the community.

It is long past time to make it happen. We have proven we can do it for early intervention and school services. We can do it for our autistic adults too, autistic adults like my son Conor.