Gallant Government Shows No Signs of Addressing Serious Adult Autism Care Issues

The Brian Gallant Liberal government is continuing the trend of pretending that the needs and well being of NB autistic adults, particularly those with severe autism  disorders, are being addressed when in fact hey are not.  Severely autistic adults have been sent to Spurwink, Maine in the past and to the Restigouche Psychiatric  Hospital in Campbellton. It's response to the proposal for an adult autism care network which has been discussed during the last decade in NB and recdently presented in a concise format the Gallant government has chosen to unleash its communications officers to brag about all that has been done while ignoring the most serious issues facing NB autistic adults: the need for adult autism treatment and permanent residential care facility for those most severely affected by autism and for autism group homes around the province with autism trained staff and expert autism professional oversight.

Psychiatric Hospital

Restigouche Hospital

10 Gallant Street

Campbellton, NB

The Restigouche Psychiatric Hospital is located at 10 Gallant Street in Campbellton NB on our NB's norther border with Quebec.  As things stand now NB adults with severe autism disorders including my now 19 year old son when I am deceased or too old and infirm will live out their lives far from the vast majority of the NB population in the south and far from the autism expertise that has been developed at the UNB-CEL, UNB Psychology and Stan Cassidy Centres in Fredericton.

My Son Conor is now 19 and, so far,  has had a happy life  notwithstanding his severe autism disorder and related conditions including seizures, life threatening reactions to his meds,  and  serious self-injurious behavior. My experience raising my son, previous Autism Society representations and public statements of NB Autism Expert Paul McDonnel are ignored by the NB Government which has responded to a very serious well drafted adult autism care proposal by tasking its communication officers to pretend that everything is just hunky dory and all will be well as long as we all keep saying "community" and "inclusion" over and over".  

Community cliches will not address the needs of severely autistic adults like my son. I know from 19 years of parenting and 17 years of autism advocacy in NB that ignoring the facts will not help my son  and other NB autistic adults.

No Autism Funding Just Jibber Jabber In Harper Budget

Shelly Berman as Judge Robert Sanders on Boston Legal
"What is this jibber-jabber? I don't like jibber jabber in my courtroom"

Senator Jim Munson, who has been an unrelenting advocate on behalf of Canadians with autism disorders and their families, questioned Marjory LeBreton (Leader of the Government and Minister of State (Seniors) yesterday over the lack of funding for autism in the Harper government budget:

"Hon. Jim Munson: Honourable senators, my question is for the Leader of the Government in the Senate. Last week's federal budget talked a lot about infrastructure. My question is about another kind of infrastructure, namely, social infrastructure.

(1505)

I talked about it yesterday, as did Senator Oliver, in dealing with autism. I do not need to go over all the figures. One in 150 families is affected by autism.

Parliament has taken steps. We lobbied hard and Minister Clement listened and did some work.

Will the government consider taking a further step to create a division for autism within the Public Health Agency of Canada so that this condition can be looked at, receive the attention it deserves, and families can receive the help they so desperately need? I am looking for that national leadership focus.

Hon. Marjory LeBreton (Leader of the Government and Minister of State (Seniors)): I am well aware of the honourable senator's hard work on the subject of autism.

As the honourable senator knows, when Minister Clement was Minister of Health he set up a research chair to study ways to move this issue forward. Autism is one of many conditions that falls within the purview of provincial departments of health and, of course, health care is delivered by the provinces.

With regard to the budget, a great deal of money has been set aside at universities for research in science and technology. It is hoped that indirectly, through the money that has been provided to universities, to the science community and to the health system, in addition to all the money that the government transfers to the provinces for health care, the treatment of autism will move forward quickly in the near or immediate future.

With the budget and the actions that the government has taken, in our consultations in various areas, we have tried to reach out to the good suggestions that are there, including the worthy ones of the honourable senator.

I am sure that Minister Aglukkaq � who is from the North, I am happy to say � and her officials, will have reviewed the files that Minister Clement was working on in terms of autism. I cannot say definitively what they are but I will find out."

Debates of the Senate (Hansard) 2nd Session, 40th Parliament,
Volume 146, Issue 7 Thursday, February 5, 2009

The reply by the Honourable Marjory LeBreton betrays no actual knowledge of autism or the evidence based effective autism intervention, ABA, that so many autistic Canadian children require to help them overcome their deficits and live fuller lives. In case someon on Ms LeBreton's staff Stumbles Upon or otherwise inadvertently reads this blog site I offer the following information from the American Academy of Pediatrics, also found on the upper right hand corner of this blog site:

The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4

American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders

I also bring to the attention of the Honourable Ms LeBreton that many autistic Canadian adults are living in reprehensible residential care facilities if they are lucky and are not simply living on the ward of a general hospital as has occurred here in New Brunswick. Some are actually exported to the United States to receive residential based treatment not available here in New Brunswick and other parts of the country.

Please Ms LeBreton, stop posturing with nonsense about autism research dollars. Canadian research for autism is not generally directed at finding cures or treatment for autism. At least some of it goes to researchers more interested in promoting feel good "autism is beautiful" nonsense.

If Ms LeBreton has a conscience, and any integrity, I ask her to please stop with the "jibber jabber" (parents advocating for autistic family members have heard it for years) and start talking about funding ABA services for autistic children and decent residential care and treatment facilities for autistic adults wherever they happen to live in Canada.

autism

Autism Horror As Son Attacks Caregiver

It is fashionable these days to talk about autism disorders as though they are joyful, beautiful blessings bestowed upon our children. Some internet bloggers prattle about the joy of autism. They also try to suppress any negative description of autism whether it was the "Ransom Notes" campaign of NYU Child Study Center's Dr. Harold Koplewicz or the courageous parents who participated in the Autism Every Day video. These feel good censors paint an inaccurate picture of autism, one which ignores completely, and misleads the public about, some of the harsher realities of autism disorders. In the process they do a huge disfavor to some severely autistic people, their families and caregivers.

In Desperate plea for help Susan Sherring of the Ottawa Sun reports the horror that confronted Brenda Reisch when her 15 year old autistic son, weighing more than 200 pounds attacked his caregiver, breaking his nose, leaving blood splattered on the walls and bruises on the caregivers back. Residential services have not yet been made available because her son's case is not considered a "crisis" level situation. Yet her son has become more violent, uncontrollable and aggressive in recent months.

"I can't describe the horror of looking at what my child had done, the amount of blood, it was all over the walls, all over the carpet, from one end of the house to the other," she told the Sun.
...

" He could potentially hurt someone else. We need help," Brenda says.

...

" We need a life. He needs a life, too. He needs help. I know this might mean he can't live with us and that devastates me. I can't tell you how many times I've been in tears.

"I love my son. He's the most precious thing to me in the world. If this is what we have to do, it's going to tear me apart, but I know he could potentially kill someone and I can't put him in that situation."

I have provided legal services to families whose children with autism spectrum disorders hurt family members and parents. And I have met others in the course of my autism advocacy. This situation is not that unusual. The truth should be told not hidden behind feel good stories and wishful thinking. To do so is to do a disservice to all involved.

autism

Autism & ABA in Ireland - "It's Like A Cloud Has Been Lifted"

“It's like a cloud has been lifted. The programme of ABA is tailored to Robyn's needs. She is walking a little now. She still doesn't talk, but she communicates through pictures. She shows us what she wants by pointing to photos of food or toys. Robyn now shows affection too. She connects with us, and has started kissing us. That is real progress.”

- Trevor Dagg, Independent, June 20 2007

Autism and ABA. The story is the same whether it is from Australia, Canada, the US, the UK, or Ireland. Spotty services. Fierce government resistance to helping autistic children and adults. Educators, who are not educated about autism and the learning methods appropriate for autistic children. Ignorance of ABA and its effectiveness in treating and educating autistic children. The story from the Independent (Ireland) which follow summarizes the spotty situation in Ireland but also shows the success that can be realized through ABA.


"Despite a lack of state help, many childhood stories of autism are of success. With the right support children can learn to interact and communicate and grow, something their parents feared they may never do

AUTISM has been in the news lately. The government fought the parents of six-year-old Sean O Cuanacháin in the High Court, arguing that they were not obliged to provide Applied Behavioural Analysis (ABA) for Sean.

The parents lost their case.

There are between 1,200 and 2,000 autism sufferers in Ireland, according to the Irish Society For Autism, and the number is increasing all the time.

“Research in the US has shown that autism levels have risen, from four cases in every 10,000 children to an alarming 30 to 60 per 10,000 children,” says Kathy Sinnott. “That would officially classify it as an epidemic.”

Autism, though, is difficult to diagnose. It's a complex condition covering a huge spectrum of behviours. Sufferers seem to be in a world of their own.

They do not interact well, they don't play with others and they have problems with speech.

People with autism fear change, and may have no sense of danger. They hate p hysical contact and they resist learning.

Early intervention for autism is vital – and therein lies the problem, because in some areas of Ireland, services are virtually non-existent.

“Children with autism need special education, as well as medical and dietary help,” says Kathy Sinnott.

Robyn Dagg, now four-and-a-half, was a normal baby who met all her milestones. But when she was 18 months, her parents, Tre vor and Julie, began to worry that Robyn was neither talking nor walking.

They took her to the Central Remedial Clinic in Clontarf, which ran a series of tests. Autism was suspected. When the couple took Robyn, then aged two, to Professor Fitzgerald, a renowned psychologist, he confirmed their worst fears.

“He said Robyn was on the autistic sphere and he gave us the report we needed to seek HSE funding,” says Trevor. “We were obviously devastated. We were trying to understand what we were dealing with. We needed someone to put their arm round our shoulders and say, ‘everything is going to be all right.'

“But we met with mass confusion. We didn't know where to go or who to talk to. We wanted a local service, and we had to do a lot of ringing around. Our lives were turned upside down.

“At two-and-a-half, Robyn had no communication at all. She was totally frustrated, and would be upset and screaming a lot of the time. Our son, Harry, was born around that time. We were worried if he would be OK.”

In September 2005, Robyn was accepted at St Catherine's, in Newcastle, Co Wicklow. She began a part-time programme at Barnacoyle, the pre-school for autism. Last September she was accepted on to the full-time programme, attending from 9am until 2.30pm each weekday.

“It's like a cloud has been lifted,” says Trevor. “The programme of ABA is tailored to Robyn's needs. She is walking a little now. She still doesn't talk, but she communicates through pictures. She shows us what she wants by pointing to photos of food or toys.

“Robyn now shows affection too. She connects with us, and has started kissing us. That is real progress.”

Barnacoyle, though, is the school offering ABA that was featured in the recent court case. The government, while happy to fund the 24 preschool age children, won't sanction them once they reach school age.

Yet many children with autism are not ready, at five, to move to mainstream school. According to Harry Cullen, acting CEO of St Catherine's, there are currently nine children at the school who do not receive H S E funding.

“And next September there will be another five,” says Cullen.

When 22-year-old Patrick Doyle from Knocknacarra, Co Galway, was diagnosed with autism, services were almost non-existent. Patrick has never received appropriate education and his parents, struggling to cope with his antisocial behaviour, have had no quality of life for years now.

Members of the Parents & Siblings Alliance, they have been lobbying the government to no avail.

“Patrick is in residential care for part of the time,” says his father, Gerry, “but they are short of staff there and he doesn't have any of the stimulating and physical activities that he so badly needs. He can be aggressive. We have no life.”

Mary and Eamon Bennett live in Tarmonbarry, Co Roscommon. It's one of the best areas for services and that's just as well because three of their four sons have autism.

“When we found out that Michael, now 15, had autism it was a huge shock,” says Mary. “Little was known about it back then. When the younger two, Eamon, now 12, and Peter, nine, were diagnosed with it too, it was unbelievable. thought, ‘was one not enough?’ ”

Michael is the most severe. He has no speech, and since having an epileptic fit last year, he is prone to rages.

“Michael and Eamon go to a special school in Castlerea. The staff there are brilliant. Eamon is doing really well. He is academically bright and is brilliant on the computer.”

As for Peter, thanks to early intervention he attends a national school and is doing really well.

Michael, Mary feels, will always need to go to a special centre. “He has a lot of behavioural problems but there is a good centre in Strokestown. He will be able to go there for activities during the day and come home at night. There are residential facilities there too.

“I can see Eamon working in an office, doing accounts perhaps, and I think Peter might be in a trade.”

Mary is full of praise for all the help and services she receives. The couple get a weekend a month of respite care, and an extra Saturday. “That's enough,” she says. “They are my children, so I have to look after them too.

“Last Sunday Peter made his First Communion. He sang at mass and he brought up the gifts with all the other children.

“Everybody who has been involved with helping Peter, from the days he received early intervention, were at the service. There wasn't a dry eye in the church. They all came back to the house and hugged us and him. It was wonderful,” she says.

ABA: what is it?

ABA is a system of autism . treatment based on behaviourist theories. Behaviours are taught through a system of rewards and consequences.

ABA breaks each learning task into several sub-tasks. To teach a child to write on paper, the child is first taught to pick up a pencil. Then the child locates the pointed end and learns to connect with the paper. The number of sub-tasks varies between children. The system looks at a child's behavioural pattern and works out a specific package to suit them. But the package will change. If successful, the child will need to move on to something else.

ABA is not a cure or a magic solution. There are no magic solutions for autism. But most children with it can be helped by ABA at some stage."


http://tinyurl.com/yt5tvb

Autism Youth and Adult Residential Care & Treatment Still Abysmal in New Brunswick

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.