Wednesday, October 30, 2013

Residential Needs of Adults with Severe Autism in New Brunswick Are Not Being Met

Autism parents, and some supporters, conducted protests in front of the Centracare pyschiatric hospital in Saint John 10 years ago advocating for better, autism spectific,  care for a man with a severe autism disorder who was placed there by the NB government of  the day. The man was relocated to a more decent accommodation outside New Brunswick but no modern residential care and treatment facilities have been built in NB. I drove to Centracare with the man's father on one occasion who told me while driving there that he had visited the facility and seen his son wearing only a "Johnny shirt" in a detention room with a cement floor and liquid on the floor.  When we arrived his son was in that same room, wearing a Johnny shirt, with liquid on the floor and no one attending to him just as his father had described seeing  him before.  No significant, systemic progress for residential care and treatment of NB adults with severe autism has been made since that time.  

Laverne Stewart and the Fredericton Daily Gleaner are running a five part series on the families raising children with severe autism disorders and the challenges they face as their children become adults.    The first two articles in the series have been published. I recommend New Brunswick residents to purchase these and the remaining three issues of the Gleaner series, either by direct purchase or by subscription to Brunswick News which provides online access to all the BN community papers.

'Parents of severely autistic kids desperate for more help' was published Tuesday, October 29, 2013 and features the autism challenges faced by autism mom Brenda Comeau and her severely autistic 9 year old son Brendan Bernier and the impact his severe autism challenges have had on Brendan and his mom.  The second article  'It's going to kill her and it's going to kill me', appears today, October 30 and features Cathy Hutchinson and her 29 year old severely autistic daughter Kristie Everett and the struggle to find a decent home with properly trained staff for Christie.

That article also features comments by Paul McDonnell and clinical psychologist and Professor Emeritus (Psychology, UNB) who has educated many parents of autistic children and provided the evidence based information foundation for the early intervention and school services advocacy that did achieve some successes for autistic children and teens before and during the school years:

"Paul McDonnell, a clinical psychologist in Fredericton and an expert on the autism spectrum, agrees that the needs of adults with autism in the province aren’t being met. McDonnell said he believes a multi-tiered approach is needed. “There have to be places for individuals to live and to work. I think we need a range of services because we have a disorder that has a significant spectrum of disabilities and issues. There are some very high-functioning individuals who need different kinds of services and support than individuals with very severe autism.” 

A residential facility would have to have staff who are highly trained in the autism spectrum, he said. “What we don’t have right now is any kind of consistent government policy regarding supports and services for persons with autism spectrum disorder and I think that it needs to recognize the diversity of needs and while that might sound challenging it’s not impossible to do.” McDonnell said warehousing adults with severe autism at psychiatric facilities and nursing homes is unacceptable. “These are not appropriate places for these people to be at all and that can lead to all kinds of other issues.” He said if a family is unable to cope with an autistic adult at home the province must provide appropriate care that allows individuals to live safely and with dignity. 

McDonnell said most special-care home workers are not properly trained in the autism spectrum. “I do think the training is really critical. Ongoing training and support is absolutely crucial.” Untrained individuals who don’t understand an autistic person’s needs can cause behaviour problems to escalate, which often results in more severe forms of inappropriate intervention including heavily medicating individuals who are sometimes tied to hospital beds, he said. “We can arrange it so that these individuals are not engaging in these behaviours. We don’t have to have that. It’s all for a lack of training.” 

The Spurwink Institute in Portland, Maine, houses some New Brunswickers with severe autism. The Daily Gleaner asked the Department of Social Development for the number of adults from the province being cared for at Spurwink and other facilities outside the province and at what cost. The department refused to provide that information. A Right to Information request was sent to the government to reveal those figures. Once again, the department refused to supply the information. 

McDonnell said he believes the money the province is spending to keep people at facilities outside the province could be better used building an autism facility here. “It costs a little bit up front to get something going but in the long run taxpayers would be saving money and the quality of life for the families and the individuals concerned would be dramatically improved. So everybody wins in the long run.” McDonnell said the government is aware that there is an issue with a lack of resources for adults with autism. He said he’s attended several meetings with government representatives where the matter has been discussed.“But nothing has happened yet … Somebody’s got to put some pressure on to get this to happen. Somebody‘s got to say this is an important issue and we have to get going on this. It’s something we need to do. There’s no question about that.”" 

The fact that the needs of adults with autism in New Brunswick are not being met has been known for many years but the will to do anything about it has simply not been present in government. At one time it appeared that then Minister of Family and Community Services Tony Huntjens was going to make a serious effort to address these needs. Minister Huntjens had taken a very personal and real interest in the early intervention autism programs at UNB-CEL and in the needs of autistic children and adults. Unfortunately he resigned from cabinet before anything was put in place for autistic adults and no successor has attempted to seriously address the needs of adults with severe autism disorders.


Anonymous said...

Harold, I see from the replies on your Facebook page that this is a national problem. What can we do to improve the situation? What is the first step that we need to take?

Anonymous said...

The vast majority of university graduates is psychology will never work in their field. Programs should focus more on application rather then just theory. An applied career program on how to care for adults with autism will create long term jobs and benifit the community.
This is my blog within a blog.
Thank you.

John Best said...

I worked in one of these places eight years ago. They drug them into oblivion, tackle them and sit on them to manage their behavior, throw them in padded rooms and go through the motions of sticking them in classrooms where they never learn anything. I was fired for trying to tech them how to cure the kids. They don't want to cure them because they would lose clients.

Anonymous said...

The government and its surrogate, NBACL, insist that inclusive education is the only way to go. While it is indeed a dominant modality, there are other options which do not require the one-size-fits-all thinking. Perhaps if other options were made available for special needs kids from an early age, some of the problems encountered in later life might at least be lessened a bit. Your efforts in terms of encouraging the funding agencies to consider other perspectives are much appreciated by all of us who feel that inclusive education is simply one of a myriad of choices. The Gleaner articles are a good starting point to further the conversation.