Autism and the NDP 2014 Election Platform: A Centre for Adult Autism Care

NDP Leader Dominic Cardy at the NDP 2014 Election Platform launch today at their campaign HQ's on Regent St.   As with each political party platform I immediately search out autism specific commitments or comments and the NDP have made a specific comment in a very neglected area in NB - adult autism care:

PREVENTATIVE CARE:

We will establish a provincial centre for the care of adults with autism.

A provincial centre for the care of adults with autism would fill a huge gap in our autism services in New Brunswick.  At present adults with autism at best can hope for care in a Level 4 group home where they may encounter difficulties with untrained staff who can not deal properly with the complex challenges of autism care.  The commitment to a centre while a huge step forward in the public discussion of autism care being the first serious mention of an adult centre for autistic adults does not indicate the quality of care to be provided eg. autism trained staff, autism appropriate professional oversight including medical attention for frequent comorbid conditions such as seizures, serious self aggression, wandering and security issues and adult education and recreation.  Nor does it address the always contentious issue ... the undeniable reality that some severely autistic adults will require permanent residential care and treatment.  The commitment however is a major step forward and it is difficult to expect more specifics in an election platform covering all aspects of life in the  province of New Brunswick. 

I enjoyed meeting and talking with Brian Duplessis, below, the NDP candidate in the riding of Fredericton North where I live.  The fact is most politicians or workers in political organizations have little real world experience with autism, fewer still with severe autism with intellectual disability a huge component of the autism spectrum.  Brian Duplessis however, has a family member with severe autism and he was already fully informed about the challenges facing persons with severe autism including adults and their families.  It was refreshing to discuss autism challenges with someone with close personal knowledge of those challenges.

Autism and the Green Party New Brunswick 2014 Election Platform

I was pleased to see some autism issues addressed in the Green Party 2014 election platform.  Much as I like the Green Party, particularly leader David Coon, in standing up for NB's environment, I didn't expect anything relevant to my central "issue" ... autism.  I was wrong. Although there is not a lot of details on how specific changes would be put in place the statements of principle are encouraging:

ACCESSING HEALTH CARE

Establish regional residential facilities for autistic adults who are unable to care for themselves.

Regional residential facilities for autistic adults would be a major step forward for many autistic adults.  The proposal still lacks a central facility in Fredericton near the autism expertise located there which could develop the expertise to accommodate the most severely autistic adults and share their expertise with the regional facilities but it is much better than we have now with generic group homes with untrained staff as one option and the Campbellton Regional Psychiatric Hospital as another and placement outside the province as yet another.  A good start but autism disorders are heterogeneous in  nature and can be very complex at the severe, lower functioning end of the spectrum including sensory challenges, self injurious behavior, severe intellectual disability, epilepsy, gastro intestinal issues in addition to the social communication and repetitive cognitive, focus and speech patterns. It is the kind of complexity that requires varying expertise in both autism behavior and common comorbid medical conditions  ...  and requires a facility that can provide both residential care and treatment as required in the most severe cases.

 A Green Government would:

Provide the resources required to fully implement the provincial inclusion policy and ensure all children can achieve their full potential. For those children who are unable to function successfully in the regular classroom even with increased resources, provide alternative education settings within the schools.

The full implementation of "the" provincial inclusion policy would be helpful for many with autism disorders.  The Green Party also accommodates those, like my son, who are severely autistic and require alternative education settings within the schools.  We fought successfully for such accommodations for my son and the Autism Society New Brunswick has long advocated, over much resistance, for the alternative education settings within schools for those who can not function in the regular classroom.  An excellent step forward for all autistic children in NB schools.

I went for a stroll on the North Riverfront Trail early this evening.  I have deviated from autism occasionally on this blog site to feature pictures I have taken on the NRF Trail that I love.  On my walk I noticed the Green Party candidate in my home riding of Fredericton North busy with her Green Party colleagues putting up the sign in the picture below.  Although she was kind enough to stop and pose for a picture she had been working hard herself at getting the sign in the picture set up.  One of her colleagues, an acquaintance from my Brunswickan days at UNB by the name of John Bosnitch, came across the access ramp and chatted.  It was interesting to learn that the pleasant lady in the picture is also a level 3 mechanic.   She was not native to this area and was stranded here a few years ago with a damaged vehicle.  She was told it would take a while to effect the repairs. She then asked if she could work at the shop because she could not afford to pay for the work otherwise.  Since then she has worked up to a level 3 mechanic; very impressive to this son of an excellent army mechanic who lacks my father's skills.

NB Adult Autism Residential Care Facility Needed: "It Is More Than Overdue" "When Will They Ever Learn?"

My 18 year old severely autistic son Conor waits for his slow poke Dad while we were out 

on a trail walk (Fredericton North Riverfront Trail). NB has known for 11 years (at least)

 that an adult autism residential care and treatment facility is badly needed.  

We are still waiting.

On June 18, 2014 I posted on Facing Autism in New Brunswick and on my Facebook page a letter I  sent to NB's political party leaders in which I commented on the long overdue need for an adult autism care facility in NB that could provide care for the most severely autistic and expertise to group homes around the province as articulated by Professor Emeritus Paul McDonnell whose 2010 comments are also re-posted herein: 

Prior to the commencement of the official election period early autism intervention issues have already received some needed attention in a new early intervention policy which provoked considerable reaction and vigorous discussion. What was not mentioned, what has never been mentioned, what never gets any serious attention, is the desperate need for an adult autism centre that could assist in providing providing ongoing training, leadership and supervision for adult autism group homes and assisted living arrangements and would also provided permanent residential care and treatment for those with severe autism disorders. 

On my personal Facebook page I received commentary from two people with considerable involvement and knowledge of autism issues from the government side of the discussion with former Education and Early Childhood Development Deputy Minister Wendy McLeod MacKnight and former Family and Community Services Minister Antoon (Tony) Huntjens 

Will Adult Autism Care Issues Be Considered During #nbvotes 2014?     Wendy McLeod MacKnight August 24 at 12:31pm Harold - it is an embarrassment to me that you and I started discussing this back in 2003 after the preschool program started and no one has yet addressed it. We came close about 5 or 6 years ago, but got shut down. it is more than overdue...

 

Antoon Jozef Huntjens August 24 at 1:16pm totally agree...It is long overdue...could save the province a lot of money, employ NBers, and have the people close at home and family. When will they ever learn?

Paul McDonnell, CBC Interview, 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 behaviourally trained supervisors and therapists. 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 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."  (Bold highlighting added - HLD)

As I have stated many times if an  autism centre is not developed to help enhance the group homes and provide permanent residential care and treatment for those with severe autism as Professor McDonnell has advised people with severe autism, including my wonderful, happy 18 year old son,  will continue to be sent to live  out their lives in Campbellton at the Regional Psychiatric Hospital. Apart from the  hospital character of that facility it is also located in a corner of the province 3 to 4 hours drive from most communities in New Brunswick and has no direct access to autism expertise.   Previous ASNB member polls  on the desirable location for an autism centre saw votes for Fredericton for several reasons, the two most critical being proximity to the autism expertise developed at UNB and the Stan Cassidy Centre, and the central location providing easier access for most families to their loved ones who would reside there temporarily and in some cases permanently. As it is those with severely autistic adult loved ones currently travel out of province or to the Restigouche Psychiatric Hospital on NB's Quebec border.

Will NB ever learn to save money and help our severely autistic adults by building a residential care and treatment facility in Fredericton or will we continue to spend money sending them out of province or send them far from family on the NB-Quebec border?

Will Adult Autism Care Issues Be Considered During #nbvotes 2014?

New Brunswick election 2014 is underway with the NDP, Liberal, Green and PANB parties going all out to replace the PC party.  Party signs are proliferating around the city of Fredericton. The Liberal Party kicked off big time in Fredericton with special guest federal Liberal leader Justin Trudeau and provincial leader Brian Gallant. It was a lively, well organized event and the optimism was clear. I enjoyed my brief chat with the charming greeting ladies pictured outside the Fredericton Ex building. In a general sense I enjoy elections, I firmly believe, despite the many legitimate bases for criticism that they are the foundation of our amazing freedoms that our soldiers have fought for and died to preserve.

There are many important issues in this election as in many others.  It will be easy for our political party leaders to overlook the needs of adults with complex severe autism disorders for whom group homes are not always an option.  In the past our "inclusive", "community" oriented province has sent severely autistic adults out of the province or to the psychiatric hospital on our northern border with Quebec far from most families in the much more heavily populated south of New Brunswick.  Maybe, just maybe, beginning with this election, our leaders will accept the reality that NB includes severely autistic adults in need of permanent residential care in a facility with professionally trained staff and oversight, a facility located in Fredericton close to the autism expertise  developed at the Stan Cassidy Centre and the UNB-CEL Autism Intervention program.

Autism in New Brunswick Under Conservatives? I Am Worried, Very Worried

I am very worried that the gains made for autistic children and students and work done towards a modern, decent residential care and treatment system for autistic youths and adults will be lost if the Conservatives are elected.  

On his facebook page Jody Carr, who will have a prominent role on disability issues if the Conservatives are elected,  has made it very clear that the Conservative era of community cliches will replace evidence based, reality based, services and accommodations for autistic children, youth and adults.  

Even worse Mr. Carr had the gall and audacity to dismiss the recommendations of autism expert Dr. Paul McDonell for  a rational, professional, adequate autism residential care system with the political sound bite that his party would not "send them away".  Mr. Carr's memory seems to have failed him.  He was a Conservative MLA during the last term of the Bernard Lord government when  autistic youths and adults were sent away to Centracare even to hospital wards.   It was that same Conservative party, of which Mr. Carr, and Mr. Alward, were members that formed the government when an autistic youth was sent to live on the grounds of the Miramichi Youth correctional facility. The youth had not committed a crime. He had not even been charged with or suspected of having committed a crime.  He was autistic and had very serious challenges and there was nowhere in Mr Carr's community for him.  He was housed in a youth jail facility while awaiting export to decent residential care and treatment out of the country in Maine. 

Jody Carr did not speak out against the jail grounds placement, inadequacy of the autism residential care system or the need to export an autistic youth as I did;  as reported in this 2005  Toronto Star article:

Autistic boy kept in New Brunswick jail

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

No 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

Jody Carr was a Conservative MLA at the time of the Toronto Star article and events described  therein. He is not mentioned or quoted in the article speaking about the youth's plight.  He did not at that time state that a Conservative government should not "send them away".  Jody Carr  was silent and did nothing to denounce decisions to send youths to prison facilities and to facilities out of the country when he sat as an MLA for the governing Conservatives. Now he had the nerve to dismiss the recommendations of an autism expert who has been intensely involved in helping autistic persons in NB and shaping the autism policies that have made NB a Canadian leader in providing preschool and school services for autistic children and youths with the political hack statement that his party would not send autistic adults away.  Jody Carr is contradicted by his past record when he said nothing while his party did indeed send them away.

If you care about an autistic child, brother, sister, grandchild or other  family member or friend please do not vote Conservative on Monday.

No Room for Adult Autism Residential Care on Conservative, NDP Agendas?

For the  Conservatives and NDP  it seems there is no room on the political lifeboat, in troubled fiscal times, for adults with autism disorders. There has been no public mention by these parties  of the existence of persons with autism in New Brunswick. This is no small point. The US Center for Disease Control has estimated that 1 in 110 people have an autism spectrum disorder. Yet neither  the Conservative Party nor the NDP have made  mention on any public media site that I can find of the existence in New Brunswick of persons with autism disorders or what lies in store for them should the NDP or Conservatives form the next government. Both parties have focused on balancing the provincial books as their primary goals and while some promises have been made neither has mentioned persons with autism. 

The last several years have seen very substantial gains made for preschool children and students with autism disorders in New Brunswick.  Autism expert Paul McDonnell has praised New Brunswick as a leader in provision of autism services for preschool and school age students with autism.  But Dr. McDonnell has also pointed out that progress has not happened for adults with autism.  In New Brunswick adults with autism have lived on hospital ward, in psychiatric hospitals and have been shipped out of the province and little has improved over the past 10 years.  Dr. McDonnell has pointed out that we need to invest in adult autism residential care in NB.  The Liberal's Kelly Lamrock had already acknowledged the need to work on autistic adult residential care. Both the PANB and the Green Party of NB have confirmed they would address the issue.  The NDP and the Conservative Party are silent.

I hope I am wrong but it seems  there is no room on the Conservative or NDP agendas, at least  during this election,  for discussion of adult autism residential care.

Best Autism Tweet of the New Brunswick Election From Liberal Kelly Lamrock

  " klamrock: Still more to do on #autism file. We'll work w/parents to address adult care incl community-based residential care #nbvotes

4 days ago via Mobile Web · Reply · View Tweet "

Over the last 4 years the Liberal government honored a commitment by Premier Graham to provide  4 years of UNB-CEL Autism Intervention Training to classes of approximately 100  teacher assistants and resource teachers a year over the objections of some senior Education officials, who actually knew little about autism. They also faced opposition from some union officials who opposed autism specfiic training for TA's. I was involved in many of the discussions and I can tell you from personal knowledge that it was a very tough fight to do the right thing for New Brunswick's autistic students. I can tell you from very direct, personal involvement that Kelly Lamrock and the Shawn Graham Liberal government honored their commitment and put the interests of NB's autistic students ahead of vested adult interests.

When Kelly Lamrock says that a Liberal government will work with the parents to address the address adult care including community based residential care this father of a severely autistic 14 year old son, who has been involved very intensely with the changes that have made New Brunswick a leader in pre-school intervention and education of autistic children says ... I believe Kelly Lamrock and a Liberal government will keep their word. I believe it because I have already seen them do it.  

 

Adult Autism Care in New Brunswick: If Not During This Election WHEN?

"If you don't understand autism, things can become very bad very quickly.  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." 

Harold Doherty, 2005

It has been five years since Canadians learned that an autistic youth who had committed no offence was being housed on the grounds of the Miramichi youth correctional facility (see article following)  solely because there was no adequate accommodation for him in New Brunswick while he waited admission to the Spurwink facility in Maine.  A residential care and treatment facility for autistic youths and adults still does not exist in New Brunswick. If the group homes are not adequate for the more severely autistic they are either sent outside of the Province, sent to the psychiatric hospital in Campbellton or in one case at least in Saint John live, at least temporarily on a hospital ward. In some cases severely autistic adults live in their parents home, sometimes wearing protective gear and with some assistance. But no decent residential treatment facility exists for New Brunswick's most severely autistic youths and adults.

If we do not discuss adult and youth residential care during this New Brunswick election WHEN will we ever  get around to it? 

WHEN will severely  autistic youths and adults have decent residential care and treatment in New Brunswick?

Autistic boy kept in New Brunswick jail

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

No 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.