Sunday, March 29, 2015

New Brunswick's Band Aid Adult Autism Disorder Care and Treatment

New Brunswick has an approach to adult autism disorder care and treatment that can most charitably be described as a Band Aid approach.   There are many reasons for this Band Aid solution apart from the consistent waving of the "we are living in hard times" dismissal that usually accompanies the replies written for Ministers of Social Development  by their communications employees. The reality, regardless of the reasons, is that adult autism care in New Brunswick typically involves one emergency solution after another.  These emergencies have existed since before I became involved in autism advocacy after my 19 year old son's autism diagnosis 17 years ago. In the 17 years since I have seen one adult autism care emergency after another and those are only the ones which have been detected and reported by the Brunswick News reporters over the years.  New Brunswick, under pressure from determined autism parent advocacy and with the direct involvement  of the University of New Brunswick and its UNB-CEL program, developed a model for early intervention which has become recognized internationally.  We have also provided autism training for Teacher/Education Aides and Teachers although much remains to be done.  It was also autism parent outrage and advocacy that revived the tertiary level pediatric autism treatment service at the Stan Cassidy Centre that had been scheduled  for closure.

With all the progress we made in early intervention, education and pediatric autism care (to age 15 according to the Stan Cassidy Centrre web site) little has been done to implement a systemic solution to the residential care and treatment needs of autistic adults in New Brunswick.  Group homes with untrained staff and ad hoc accommodation for those who can function in those environments helps some but many require substantially higher levels of care ... tertiary level care such as that which exists until age 15 in New Brunswick but is truncated for unknown reasons at that age.  I am not aware of any other medical disorder which this province or any other province cuts off at an arbitrary age when it is well known that severely autistic adults require care for the rest of their lives.

Permanency should also be a factor of adult residential care.  Many autistic adults, particularly severely autistic adults, suffer when their daily lives are disrupted.  This fact does not appear to be factored at all into the decision making of the comfortable civil servants who have resisted for a decade the establishment of a permanent  level adult care facility which could provide permanent residential care for the severely autistic along with treatment and temporary care and treatment for those with greater functioning levels.  The facility could also act as a centre to ensure that autism specific group homes include autism trained staff and some professional oversight. 

New Brunswick has proven itself to be a humane and innovative, even a recognized model,  province  in the treatment and education of autistic children and youths. It truly puzzle me and concerns me more as my son and I both grow older  why we do not extend the tertiary level care we provide to autistic youth to autistic adults and why we do not develop the autism treatment centre and group home network system suggested by Professor Emeritus Paul McDonnell in a 2010 Election CBC interview.  What are our civil servants afraid of?  Whey do they not care about the needs of autistic adults, particularly those with severe autism disabilities?

Band Aid solutions have not provided the systemic adult autism care and treatment that is required in New Brunswick.  It is time to extend the innovative but evidence based approaches to autism care , treatment, and education to autistic adults in NB.  It is time to end the age based discrimination against NB autistic adults. 

Friday, March 27, 2015

2 Thumbs Up for the Chalmers Hospital As It Rocks Purple Day to Raise Awareness for Epilepsy! March 26, 2015

Dawn Bowie, a long time friend who works at the Emergency Department of the Chalmers Hospital in Fredericton New Brunswick shared this Youtube video of staff at the Chalmers rocking Purple Day yesterday.  I saw it a few minutes ago and it made a great start to my day.  Seeing this video really lifted my spirits and reminded me of those who care and those who help.

Conor suffered a life threatening reaction to his seizure medication in April 2013 but the Chalmers Emergency and Intensive Care Unit were there to keep him  safe and restore his health.

Our family has another connection to the Chalmers Hospital and their services to person with epilepsy: our younger son suffers from autism disorder and epileptic seizures.  His seizures have required 911 calls and ambulance trips to the Chalmers on several occasions including recently.  He has always received excellent care at the emergency room of the Chalmers.  On one occasion he suffered a serious, life threatening adverse reaction to the seizure medication he was taking at that time.  While watching my son lying unconscious on a hospital bed in the Chalmers Intensive Care Unit where he stayed for 6 days connected to monitors with tubes gathering bodily fluids for testing I was aware of the danger he was in by I still could not bring myself to believe that I might lose him.  The reality though was that he was in great danger when he arrived and he left the Chalmers because of the amazing health care team that saved his life and restored his health..

The Chalmers has been a life saver for my son.  Yesterday they also contributed to epilepsy awareness and produced a video that lifts my spirits as I start this day. 

2 thumbs up for the Chalmers, 2 thumbs way up!!!!

Saturday, March 14, 2015

Run Jump Fly Boy Will Soon Return

With the return of Spring after a tough winter will come lots of  outdoor time on our trails in the beautiful City of Fredericton with Conor. .Autism, seizures, seizure meds, reactions to seizure meds and this unusually tough winter will give way to spring and the Return of the Run Jump Fly Boy:

Friday, March 06, 2015

THANK YOU Conservative MLA Jake Stewart and NDP Leader Dominic Cardy For Speaking Up In Support Of Adult Autism Care and Treatment in New Brunswick

New Brunswick governments have been outstanding in establishing an internationally recognized early evidence based autism intervention service and have made some gains in autism training for Education Aides and Resource Teachers.  

There has been no progress though  in establishing an autism centre for adult treatment and permanent residential care for severely impacted autistic adults with a network of autism group homes around the province.

It is very easy to become discouraged in advocating for adult autism care in New Brunswick.  The establishment of early evidence based autism intervention services was not easy but successes have been achieved.  While there have been backward steps such as the recent hard line 95% attendance requirement, since revised, which did not appear to take into pressures and demands on family and the time available to them the NB early intervention program has been recognized as a leading Canadian model by the Association for Science in Autism Treatment.  Some gains have also been made in provision of autism trained Education Aides and Resource Teachers although much more needs to be done including training more aides and teachers and ensuring that autism trained aides work with autistic students and not be displaced by untrained aides with more seniority.  Adult autism residential care and treatment however  remains abysmal and the first signs indicate that things are not likely to change under the current Liberal government. The NDP and Green Party both addressed adult autism care issues during the last provincial election.  Both the Liberal and Conservative parties were silent on autism issues.    

The adult autism care problem, as reported by Samantha Magee and the Miramichi Leader, has flared up again recently in Miramichi when a 19 year old non verbal autistic man was given notice of eviction from the special care home in which he resided solely because he was now an adult. Several persons including me spoke out yet again asking our government to address the adult autism care issue in New Brunswick.  Specifically we asked the government yet again to build an autism treatment centre in Fredericton near the expertise of the Stan Cassidy Centre which treats autistic children and youths and provide permanent residential care for those with severe dysfunctional autism disorder. The centre would also provide oversight and training for autism group homes in New Brunswick communities around the province.

The Miramichi Leader reported  former Autism Society New Brunswick President Lila Barry's comments urging the establishment of the autism centre based network as described by UNB Professor Emeritus (Pscychology) Paul McDonnell in 2010 and asked the Minsiter of Social Development for a response.   The government response came from Communications Officer Anne Bull:

"When asked if the minister of Social Development has looked into the possibility of building such a facility that could offer diagnosis, treatment and long-term living arrangements, the Miramichi Leader received the following response from communications officer Anne Bull.

“The Government of New Brunswick recognizes the need to provide high quality services that support our province’s families and individuals living with autism. As a government, we are committed to continuing to improve services to families and individuals living with autism. This includes examining the issues around living accommodations and supports for those with high care needs who require services beyond what is presently available. Government continues to make significant investments in services to adults with disabilities. Social Development works in collaboration with the New Brunswick Disability Executive Network and other key stakeholders to recommend on-going improvements to the Disability Support Program, finding innovative ways to support adults with disabilities and their families with the unique challenges they face.”

Communications Officer Bull did not provide a direct answer to the questions of whether the Minister of Social Development had even looked into the possibility of building the facility that could offer diagnosis, treatment and long-term living arrangements. Requests for such a centre have been made for years and it is easy to become discouraged when our government officials refuse to provide a direct answer to such an important question and instead pass the buck to a communication officer to provide a formulaic, meaningless answer.

A bright side to the recent events has been the support of Conservative MLA Jake Stewart and NDP Party Leader Dominic Cardy.  Mr Stewart was also quoted by the Miramichi Leader's Samantha Magee:

"Jake Stewart, Progressive Conservative MLA for Southwest Miramichi, agreed that the system was failing the Keenans and other families like them in similar situations. “Adequate facilities are needed in New Brunswick to alleviate strain on families found in this situation, and on individuals like Brandon who clearly deserves better. Also, a change in policy in Social Development is most likely needed,” said Stewart in an email to the Miramichi Leader. “‎I’m offering my support in the construction of new facilities, a potential change in policy, and of course I can and will continue to be a voice of reason for the Keenan family,” said the MLA. “But first, it’s important to allow Brandon to stay at M.O.R.E. Services from now on without worry of being displaced due to his age. If another facility can accommodate, this too may be beneficial. Time is of the essence.”"

NDP party leader Domonic Cardy responded to the recent events in Miramichi with a Facebook commentary:

Adults with autism get a raw deal in New Brunswick - often shipped off to a facility in Maine. During the election the NDP committed to build a residential facility here in New Brunswick where adults with autism who need the care can get it, 24/7. The Liberal government has been supportive of this idea but, as you can see from the story below, we need to move faster.
This is why we have to rein in wasteful spending: so we have the resources to look after the folks who need our help.
As the parent of a severely autistic 19 year old son who lives at home and requires 24/7 care I know that many parents face daunting challenges caring for their autistic children and find it difficult to continue to provide that care, while earning a living and still find the energy, time and willpower to continue to advocate in the face of government and bureaucratic inertia and indifference  for humane, professional adult autism care and treatment but ... we have no other choice; we have to do our best to remain strong and to remain optimistic and to continue the fight.  
In the meantime THANK YOU Jake Stewart and Dominic Cardy for your support and THANK YOU Samantha Magee and the Miramichi Leader for your attention and outstanding journalism on adult autism care and treatment issues.