Parents and the NB Government Must Face Adult Autism Residential Care and Treatment Issues In Election 2018

Autism advocates in NB have long pushed for out governments to face autism issues and we must continue pushing for them to address adult autism residential care and treatment issues.

As parents we must continue the fight for an adult autism network as advocated for by the Autism Society NB in 2008 and called for in the 2010 election by practicing psychologist, and retired university professor Paul McDonnell:  

Paul McDonnell, September 2010

"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."

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."

Professor McDonnell  elaborated on tho adult autism network principles in a joint presentation with parents to the current government in 2015.  After that  positive meeting with then Minister of Social Development  Cathy Rogers the government has once again resorted to sending our severely challenged autistic adults to the Psychiatric Hospital in Fredericton. 

Parents have fought for many years to ensure that government face autism issues.  We enjoyed many successes as an internationally recognized early autism treatment program was developed based on a treatment program at UNB-CEL in Fredericton.  We were also able to encourage government to provide UNB-CEL autism training to hundreds of teacher/education aides and to reverse the decision to close the Stan Cassidy Centre Autism team which provides autism consultation services up to age 19. Governments have for over a decade though refused to develop a humane, evidence based and responsible adult residential care and treatment network. The need for such a network  is beyond dispute as, in recent years, studies have document both adult autism homelessness and astonishing premature mortality rates among persons with autism spectrum disorders, 

It is long past time for a NB government to stand up for our autistic adults with autism and stop exiling them to Campbellton far from families in the much more heavily populated center and south regions of the province and far from the centrally located autism expertise that has been developing in Fredericton. As parents we must continue the fight for a humane adult autism residential care and treatment network close to families, communities and centrally located auitism expertise in NB. 

Parents of children and adults with Autism Spectrum Disorder blast Premier Gallant, Opposition Leader, Blaine Higgs and all 49 Members of the Legislative Assembly

Parents of children and adults with Autism Spectrum Disorder blast Premier Gallant, Opposition Leader, Blaine Higgs and all 49 Members of the Legislative Assembly.

Parents and self-advocates want to convey their deepest disappointment and dissatisfaction to the Government of New Brunswick for their indifference and non-support to persons with Autism Spectrum Disorder. On behalf of parents across the Province of New Brunswick, Autism Advocacy New Brunswick extended a special invitation to Premier Gallant, Opposition Leader Blaine Higgs and all 49 MLA’s to attend a conference on Autism Adult Care Services.

Autism Advocacy New Brunswick hosted the conference in Miramichi on June 16th at NBCC. The conference was open to all parents, self-advocates, and families in New Brunswick. Parents felt that it was vital that government representatives be there to hear the concerns of families and to hear from the main guest speaker Dr. Paul MacDonnell, the leading Autism expert in the province. Dr. MacDonnell has tremendous insight on the current adult crisis in the Province of New Brunswick, but more importantly he also has a solution to the crisis. Dr. MacDonnell submitted a proposal in 2015 on Autism Adult Care Services to the government, and as of today there has been no movement on this file. Parents were hoping to connect not only with their own MLA but had hopes of dialoguing with many MLA’s so that Dr. MacDonnell’s presentation would be a starting point to build trust and understanding with families, resulting in positive steps to make changes. Sadly, this collective process to work together was never to unfold on June 16th.

Parents were dismayed and aghast when an organizer asked the parliamentary dignitaries to stand for recognition, and to thank those who came to support families. There was no recognition or acknowledgement, as there were no MLA’s from any part of the province who bothered to show up. Yes, it is beyond shameful. Now the question is how do parties spin this? There was not a parent in room A1145 who could be sold on the idea that 49 MLA’s and their leaders were too busy to attend due to their schedules. The audience felt disrespected and jilted. The parents and self-advocates knew in that moment, that their children were not a priority of any government.

New Brunswick citizens expect certain qualities of behaviours among all MLA’s. Parent’s not only felt betrayed by their own MLA, but the most devastating outcome resulted in adults with Autism Spectrum disorder feeling marginalized. To quote a few number of self-advocates, “They don’t care.” Intentional or unintentional, the leaders and the MLA’s by their absence, devalued a group of vulnerable people. As parents felt strong emotions from within, one statement consistently arose. “They don’t care about my son or anyone else’s son or daughter. The only thing they care about are themselves and their pensions.
In conclusion, we as parents are asking, is this the real world of how political actors operate, a collective body of leaders and MLA’s? One thing we can be sure of is these political actors will be out shortly knocking on your doors looking for a vote. When politicians fall short of expectation and standards, this results in let-down and disappointment. These political actors tore down the human spirit on June 16th.

My Son Conor Is Why I Speak Out For an Adult Autism Residential Care Network

My son Conor is why I fight for an autism network with a centre in Fredericton, the location of NB's autism expertise, that has won international recognition over the last 20 years. I will be speaking tomorrow June 16 at 1 pm at the NBCC Miramichi campus on this topic along with fellow autism parent advocate Lila Barry and NB autism expert Paul McDonnell. The centre would provide permanent residential care, treatment and continuing education and interaction with the community for the most severely challenged. Facilities in other areas of the province would provide similar services depending on the needs of the individuals. These specific pictures show Conor on Fredericton's North Riverfront Trail 3 years ago. Conor's autism, intellectual disability and epilepsy bring many challenges but he brings his Dad great joy every day, every single day.

It Takes a Village to Support Adults with Autism Spectrum Disorder - June 16 1:00 - 3:30 NBCC Miramichi Campus

Lila Barry posted
May 30, 2018

“It Takes a Village to Support Adults with Autism Spectrum Disorder.”

Autism Advocacy New Brunswick is pleased to announce we will be hosting a meeting concerning the lack of Autism Adult Care Services in the Province of New Brunswick. This will be held on Saturday, June 16th from 1:00-3:30pm at New Brunswick Community College, Miramichi Campus in room A1145.
We are extending an invitation to parents, self-advocates, and families, as well as persons who have a strong interest in supporting adults with Autism Spectrum Disorder. 

We have three guest speakers and they will be speaking on the following topics:

1. Harold Doherty, is a father of an adult son with Autism, and a long- time Autism advocate who is currently practicing law in Fredericton. He will speak on the history of Autism services in the Province of New Brunswick, and will illustrate the advancements that have been made in the past 15 years. Harold will also speak about the current lack of services for adults who have Autism Spectrum Disorder. His talk will address issues in regards to adults who have high needs, with limited to zero communications, who are intellectually challenged, and may have an existing co-morbid condition such as a seizure disorder. He will talk about the challenges that he and his family face with his own son on a daily basis. He will also emphasize the importance of being a unified voice if changes are to be made in this province. Parents, self-advocates and the community must be united, and become the voice for the adult population.

2. Lila Barry is a mother of an adult son who has Autism Spectrum Disorder. Lila is a former president of Autism Society New Brunswick, and a retired Executive Director of Autism Resources Miramichi. The scope of her career covers a span of 42 years, working in the field with persons with special needs. Currently, she volunteers at Autism Resources Miramichi, and her volunteer work encompasses advocacy within the Province of New Brunswick. A typical example is preparing for today’s event. She is a behind the scene girl, and is passionate in supporting persons with ASD. Lila will speak on her experiences raising, and working with children and adults who live with Asperger’s Syndrome or HFA.

3. Dr. Paul MacDonnell is a retired psychologist who specializes in Autism Spectrum Disorder. As a Professor Emeritus in Psychology at the University of New Brunswick, he has distinguished himself in his career. He has received international recognition for his research, and has been viewed as a model for others in the field. In 2004 the government of the day funded a province–wide Autism Intervention Training program, for preschool-aged children. The lead consultant was Dr. Paul MacDonnell. Years later, he was also the lead consultant when funding was made available to train Educational Assistants and Methods and Resource Teachers within the Department of Education. In 2015 Dr. Paul MacDonnell submitted a proposal on Adult Autism Care Services to the Province of New Brunswick. This proposal is called, “It Takes a Village to Support Adults with Autism Spectrum Disorder.” In simple terms, it is a comprehensive document that addresses all the needs of the adult population. Dr. Paul MacDonnell will be giving an overview of the proposal. It encompasses the needs of the full spectrum, including the needs of severely affected adults living with Autism, all the way to the adults who are living with Asperger’s Syndrome or High-Functioning Autism. The needs vary on the spectrum so it’s important to recognize that not all persons have the same needs and challenges.

Please note, as of today’s date Dr. Paul MacDonnell’s submission paper remains in the hands of the Province of New Brunswick. There has been no response or action, nor do we anticipate any in the near future. It is only through efforts and dedication of parents, self-advocates and community that changes will be made. Please be the voices these adults need you to be. The announcements of the Preschool Autism Intervention Training Program and the training for Educational Assistants, Method and Resources Teachers, Autism Clinical Supervisors for School-Aged Children were announced a few weeks prior to 2 elections. This is why we must give voice now, otherwise there is a high likelihood the inaction will continue.

We encourage all parents to attend (who have sons or daughters, who are preschool age, a teen or adolescent, a young adult or middle-age adult or senior who are living with Autism Spectrum Disorder.)
“A child with Autism, grows into an adult with Autism.”

Please RSVP no later than Monday, June 11th to Autism Resources Miramichi by phone at 622-8137 or email at arm@nb.aibn.com. 

Identify:
1. If you are a parent, self-advocate, family member or community member.
2. Place of residence.
3. Total number in your group that will be attending.
4. Your age if you are a self-advocate.

Thank you and if you have any questions please call the above number, or call Lila Barry at 773-5340.

Sincerely,

Lila Barry – Event Coordinator

Please share with your friends and ask your friends, friends to share. Please support and give a voice to adults living with Autism Spectrum Disorder.