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.

8 Years Later: Autism Youth & Adult Residential Care & Treatment Still Abysmal in New Brunswick

In May 2007 I commented on this site about the abysmal state of Youth and Adult Residential Care in New Brunswick. That commentary included the October 2005 article by then Toronto Star journalist Kelly Toughill who is apparently now a Director and Associate Professor in the School of Journalism at the University of Kings College in Halifax, Nova Scotia. As an Autism Society New Brunswick representative and as the parent of a son with severe autism and profound developmental delays I have reminded the NB government, under both Liberal and Conservative administrations of the need for autism trained staff to work in group homes with autistic youth and adults.  I have also reminded them that we need an intermediate level facility based in Fredericton, close to the UNB Psychology department, the UNB-CEL Autism Intervention Training program and the Stan Cassidy autism treatment team.  Such a center could provide autism trained staff AND professional oversight and treatment for the more severely autistic youth and adults while also providing training and clinical visits as needed to group homes around the province. In the past year the government has indicated that one group home has received autism training for the staff as a pilot project.  8 years after a youth was sent to reside on the grounds of the Miramichi correcitonal facility, and with Autism Awareness month in Canada drawing to an end, there is still NO facility in place for those like my son with severe autism, the youth who had been sent to the correctional facility grounds in Miramichi, for those like the man sent to Spurwink Maine or the son of the letter writer from Woodstock whose letter appears at the conclusion of this blog post.

As parents we fought hard for early evidence based autism intervention and for the quality program to provide the training to those working with young children.  We also advocated with some success for autism trained teacher aides and resource teachers and accommodation of some autistic students with placement outside the regular classroom over intense opposition from the powerful extreme inclusion "community living" forces in New Brunswick which typically have not been of assistance to severely autistic children, youth and adults.  Adult care autism facilities  have been very much more difficult to advance achieve in part because of money, in part because it is harder to motivate parents of younger children to look ahead to the adult years and in very large part because of the ideological objections of the community living movement.  There is no choice in the matter though, we must fight hard for decent, modern adult residential care in New Brunswick or send our severely autistic adults to other jurisdictions. 

In October 2005 the Toronto Star reported on the case of a New Brunswick autistic youth who was being housed by the Province of New Brunswick on the gounds of a youth correctional facility. The youth had committed no crime. The state of New Brunswick's youth and adult residential care and treatment facilities was so bad, virtually non-existent for those with more severe and challenging autism disorder, that the province felt it was the only place that could accommodate the youth while they waited for his admission to a facility in the United States. The Toronto Star article follows this comment. Unfortunately, as the letter from Stephen Robbins posted here a couple of days ago indicates things have not improved any since then. In New Brunswick we must still export our autistic youths and adults out of the country for decent residential care and treatment.

From a personal perspective this issue weighs heavily on my mind. My son Conor was 9 at the time of the first story. He is now 11 and nearing the age of the two youths in these stories. In the meantime youth and adult residential care and treatment in New Brunswick have not moved a single steop forward. The bureaucracy does what the bureaucracy always does. It delays, it denies that problems exist, it worries about the careers of its members and whether they might be embarassed but it takes no significant action on critical issues affecting some of New Brunswick's vulnerable members.

" Autistic boy kept in New Brunswick jail

No other place for him to stay 13-year-old must go to U.S. hospitalNo other place for him to stay

13-year-old must go to U.S. hospital

The Toronto Star, KELLY TOUGHILL, ATLANTIC CANADA BUREAU, Oct. 19, 2005

HALIFAX—A 13-year-old autistic boy now living in a New Brunswick jail compound will be sent out of Canada because there is no home, hospital or institution that can handle him in his own province.

Provincial officials confirmed yesterday the boy is living in a visitor's apartment at the Miramichi Youth Centre and will be moved to a treatment centre in Maine by November.

They stressed he is not under lock and key, has no contact with other inmates and is living outside the high wire fence that surrounds the youth detention centre.

Nevertheless, the jailhouse placement and the transfer to Maine have outraged mental health advocates and opposition critics.

"They put this boy in a criminal facility because he is autistic," said Harold Doherty, a board member of the Autism Society of New Brunswick.

"Now we are exporting our children because we can't care for them. This is Canada, not a Third World country.

``We are supposed to have a decent standard of care for the sick and the vulnerable, but we don't."

Liberal MLA John Foran echoed his concern. "This boy has done nothing wrong, is not the subject of any court order, but is in a penal institution."

Provincial officials yesterday insisted critics are misrepresenting the nature of the boy's situation and that in fact the province has done everything it can to help him.

"This individual is not being held, and is not incarcerated," said Lori-Jean Johnson, spokeswoman for the family and community services department.

"He has housekeeping, bath and a separate entrance. We are just utilizing existing resources."

Privacy laws prevent officials from discussing anything that would reveal the boy's identity, including details of his previous living situation and the whereabouts of his parents.

This much is known: He suffers from a severe form of autism and is a ward of the state, under the guardianship of the minister of family and community services. He was living in a group home until recently, but became so violent that he was judged a danger to himself and others. At a psychologist's recommendation, he was moved to a three-bedroom apartment on the grounds of the Miramichi Youth Centre, a prison for about 50 young offenders. Two attendants from a private company watch the boy around the clock, at a cost to taxpayers of $700 a day.

Johnson said she does not know any details of his care.

Doherty said the jailhouse placement and move to Maine highlight the desperate need for better services for autistic children in New Brunswick and across Canada.

He said staff at most group homes in New Brunswick aren't trained to deal with autism and don't understand the disorder.

"If you don't understand autism, things can become very bad very quickly," said Doherty, who has a 9-year-old son with the disorder.

"We have been pushing for (better facilities) in New Brunswick for several years. This is not a crisis that has popped up in the last two days. Residential care is a critical element for these people and it is not being provided."

Johnson said the provincial system of group homes and institutions that care for children and adults with psychiatric disorders and mental disabilities works for most people.

"We do have existing resources, but once in a while, there will be an exception. Here, we are looking at a very extreme case."

The boy will be moved to an Augusta, Me., treatment centre at the end of the month, said Johnson.

The centre, run by a non-profit group called Spurwink, specializes in dealing with autistic adolescents.

A Spurwink representative did not return a phone call from the Toronto Star.

Provincial officials could not detail the cost to keep the child at Spurwink, nor did they have information about why he's being sent to Maine, rather than a Canadian facility in another province. "

....

Keep autistic children in the province

Daily Gleaner (Fredericton NB)

Published Wednesday May 23rd, 2007

Appeared on page C7

This is a letter to Premier Shawn Graham.

I am a father of a 13-year-old autistic boy. We had to fight for services for our son from the day he was born: to get diagnosed, to get Applied Behavioural Analysis therapy (before it was mandatory), to get teacher's aides in the classroom, to keep him in school, and to get hospital treatment when his compulsion to bite and pinch got to the point where he was covered in wounds and bruises.

I am afraid my wife and I do not have much fight left in us these days. Our son has lived under constant supervision 24 hours a day for the last year. Two workers stay in our home with him during the day (two are needed to restrain him during his rages). While we commend them for all they have done, the workers are merely a Band-Aid solution.

Our only option at this point is to send our son out of country to the U.S. for treatment that he desperately needs.

Services at the two facilities, in Maine or Boston, will cost the government $200,000 to $300,000 a year. Right now my son is costing the government $15,000 to $20,000 a month because of the government's lack of direction when it comes to older autistic children.

My question to you, Mr. Graham, is that it may have been cost effective at one time to send these children away (out of sight, out of mind). But now with it being 1 in 150 children being diagnosed within the autism spectrum disorder, maybe we should re-evaluate the direction our province is going in.

I realize that there may be no other recourse for my son but to be sent to these facilities in the U.S. for treatment.

I hope in the future we may be able to prevent our children from having to leave Canada to get the services they so desperately need.

Stephen Robbins

Woodstock, N.B."