Autism Reality

Autism challenging for all

Autism challenging for all

Parents happy with province’s support, but want more.

By Tony Kiritsis

Published Thursday May 24th, 2007

Standing tall atop the jungle gym almost eye level with his father Todd, Ryan Downey paces back and forth with a smile on his face that comes and goes. Perhaps he’s unaware of the barking dogs running in the unkempt field behind him, their owner calling out commands. Or perhaps he doesn’t care, more concerned about how he will get down.

Just by looking at Ryan as he cautiously approaches the slide, toward Todd’s coaxing voice, it’s as if there’s nothing wrong. But, behind his blue eyes there’s something different about him and unlike other four-year olds his age, he can’t talk. If he could, he would probably tell you exactly what’s wrong.

Instead, he will pace around the room, his hands sometimes flapping, offering the impression he’s trying to master a one-handed clap.

At other times he rocks back and forth, his teeth biting down, slowly tearing a hole into the top right-hand shoulder of his shirt. Or he screams and cries because he’s scared and frustrated and needs to be heard.

Somewhere, in another part of the city, another lost voice is that of 22-year-old Christopher Hammel.

This docile individual can look intimidating when standing, towering at over six-feet tall. His expressionless stare can be mistaken for a look of displeasure, until he approaches you, raises his powerful hands and pats you on the shoulder.

Seated across from Christopher is his voice; his mother Karen. Like Ryan, Christopher is non-verbal. His frustration and pleasure reveal themselves through grunts, noises and the use of body language.

Ryan Downey and Christopher Hammel are only two of the multitude of children and adults in Canada who suffer from one of the many forms of autism. Autistic children face daily struggles well into adulthood, while their families fight on their behalf to provide the best possible life for their autistic children.

In Canada, roughly 1/165 people aged 0-19 have an Autism Spectrum Disorder (ASD). Adequate funding for services and the need to properly educate these children early in life are only two of the challenges that parents and the systems in place face.

“We thought it was the end of the world,” says Todd, when he and Tamara discovered Ryan was autistic.

Parents of autistic children face daily struggles that often leave them worn out. Not only must they contend with the emotional trauma, but also the financial instability.

“When your child is autistic it’s a fight you’re in for life. Some people do give up and I don’t criticize them,” says Harold Doherty, a local lawyer and autism activist.

Doherty has been fighting for better services on the part of his family, and others in the community.

Karen Hammel says she understands the strain that’s placed on the family. When she had Christopher diagnosed at the IWK Hospital in Halifax in 1986, doctors there told her she should institutionalize her son. Since then, she’s placed his needs first.

“We don’t eat out, we don’t go to movies,” says Karen. “House repairs haven’t been taken care of. We just go without things that most people don’t go without.”

Like many parents of children with disorders Todd and Tamara were in denial about Ryan’s condition. They blamed themselves for something they thought they could have prevented, when in fact they were doing everything they knew.

“We were pissed at ourselves for not picking up on it,” says Todd. “It was as if we failed as parents.” Autism is a disorder with one face but wearing multiple masks to conceal its identity.

Considered a spectrum disorder, those diagnosed fall upon a scale and are assessed based on the severity of their symptoms.

Children born with an ASD tend to avoid social interaction with other people. They lack communication skills and engage in excessive repetitive stereotypical behaviours called stimming.

Since the diagnosis the Downey’s have found support in Fredericton’s autistic community through the Autism Society of New Brunswick and Autism Intervention Services, a local centre where Ryan receives therapy.

It’s here, amidst the maze of cubicles that reminds one of an office building, where behind the grey dividers you would expect to find a middle-aged man hunched over a computer busy typing, pictures of his wife and kids pinned to the board above his desk.

Yet there are no desks, nor are there any middle-aged men hard at work behind those dividers. But there are kids back there, kids like Ryan.

Child psychologist Paul McDonnell, who diagnosed Ryan, says that therapy is by no means a cure, because the word cure demotes an absolute result. Instead, McDonnell says people will say this child will become indistinguishable from other children.

When the centre’s current location opened in May of 2006, program director Danielle Pelletier says they only anticipated 30 children but now have over 50 children receiving treatment.

Since most children are diagnosed after the age of two, it allows them three to four years of provincially funded therapy. The key to helping children with an ASD is to intervene early.

The centre practices applied behavioural analysis therapy (ABA), a repetitive process by which tasks are broken down into smaller steps. As the child learns each step he can combine them into one complete task.

In New Brunswick, pre-school aged children receive 20 hours of government funded therapy each week through the Department of Family and Community Services. Other Canadian provinces like Alberta will fund autistic children until they reach 18.

“It pretty much seems that 20 hours a week is rock bottom,” Dr. McDonnell says. “Research pretty consistently shows that over 25 hours and especially over 30 hours, will give you much better results.” Sheila Bulmer, provincial program advisor with the Early Childhood and School Based Services Branch with Family and Community Services says, “We came up with 20 hours, and obviously that’s at the lower end, but the other monies and services that children can tap into is what we call integrated daycare.” Bulmer says parent involvement at home also contributes to the child’s therapy and learning.

Although parents will do all they can to provide extra therapy and learning for their children, the bottom line is they aren’t trained therapists.

“It turns out New Brunswick is a good place to be if your child has autism, especially the Fredericton area,” says Todd. “We’ve seen serious improvement and that makes us happy.” The therapy Ryan and other children his age receive may be adequate, but more could always be done.

“You do the intensive intervention up front because that’s where you’re guaranteed to get the most improvement and the most change,” Bulmer says.

The money the Downey’s receive goes directly to Autism Intervention Services to cover an array of costs including the therapy. Yet all this money is still not enough.

Hundreds of dollars are spent on new toys for new therapies and because Ryan requires around the clock supervision, Todd has become his primary caregiver giving up his career.

“We’ve already cashed in some retirement money to help him and we’ll probably have to cash more,” says Tamara.

Early intervention is meant to aid autistic children in order they be integrated into society with the hope that someday, they will be able to live semi-independent lives.

“I’m most worried about the school system,” Todd says. “I think he’s going to be ready for school, but is the school going to be ready for him?”

Harold Doherty believes the system isn’t prepared to handle these students and changes need to be made. “The system says teachers teach and that’s it.”

Each year approximately 40-50 new students with ASD will enter the English sector school system in New Brunswick. This number is high considering last year, roughly 24 students with an autism spectrum disorder graduated or phased out of the system at age 21.

With nine Anglophone and five Francophone districts, the English and French sectors combined have approximately 900 students with ASD from kindergarten to grade 12 province wide.

Stephanie Allen-Holt, a learning specialist with the Department of Education for students with autism spectrum disorder, says over the last two years her department has been trying to increase the capacity for specialists that can work specifically and directly with autistic children.

Allen-Holt says one of the recommendations from the Liberal platform was to train teacher assistants through the University of New Brunswick’s College of Extended Learning with autism support worker training. This called for 100 trained teacher assistants each year over four years.

“What’s the cost going to be when you have a child that’s not appropriately educated? You’re putting money into teaching them pre-school and when they go to school, if that support isn’t continued, there’s actually the chance some kids could digress,” Tamara says.

New Brunswick’s Minister of Education, Kelly Lamrock says his department will begin the training as soon as possible.

“If it’s at all possible to do in September, we will, trust me. That will be the first spending order I give for the new budget year,” says Lamrock.

As parents like the Downeys fight for their son’s well-being, the outcome is to provide a better quality of life for the future. For parents like Karen this is now the fight.

“The cost down the road is immense for the government if they want to look at cost and numbers and dollars. To take care of someone who can’t independently, or somewhat independently function and become a part of society, that cost is huge. Pay now, or pay a lot later,” Tamara says.

Karen has fought to give Christopher similar if not equal opportunities in life, but says while society is accepting and including, they aren’t integrating. She has taken it upon herself to integrate her son into society.

Two afternoons every week, Christopher walks through the glass paneled doors at the Greco on Dundonald Street in Fredericton, to the greetings of fellow employees. He comes to build boxes that will end up at doors of residents in the city.

As his strong hands gently assemble the malleable puzzle like cardboard cut-out pieces, the ability to hold down a job shows with enough help, there may be nothing he can’t achieve.

“For older individuals the need is proper residential care,” says Doherty. “Unless you can care for your child, you have to place them in a group home.”

Karen has no inclination of placing her son in a home any time soon if she can help it. Parents like the Downeys hope one day they will not have to make that choice.

“Someday it would be nice if adults with autism had some type of program that would be available to them and their families,” says Pelletier. While Family and Community Services’ long-term care plan provides Christopher with a care worker and a disability pension, it’s still not enough.

“I’m currently fighting to get clinical supervision covered,” Karen says. The cost for this service is approximately $10,000 a year.

As it stands, the Department of Family and Community Services and the Department of Health and Wellness won’t cover clinical supervision because it’s considered an indirect service.

Exhausting all her governmental avenues, if a resolution isn’t achieved, Karen feels she has no alternative but to file a human rights complaint, as she believes her son is being discriminated against.

The Downey’s have wrestled and settled with a lot in a short period of time, even though they’re in the early stages of the fight for Ryan’s future.

“We’ve come to terms that this is how it’s going to be,” Todd says. “I’ve come to terms that I’m probably not going to have a career. We’ve come to terms that we aren’t having another child.”

The intervention Ryan began months ago has yielded an improvement . He has begun to interact with other children at the centre and is able to be in public spaces like the mall with minimal incidents.

Karen knows she will always be fighting for Christopher. One day she won’t be able to take care of him anymore and wonders what will happen to him in the future.

“No matter what it is you’re looking for, you always just have to keep repeating and repeating it to the government. After a while…you feel so beaten down,” Karen says.

The future for children like Ryan appears optimistic. Programs and services to aid autistic children in their youth have improved, but have a long way to go.

The future for adults like Christopher would be bleak, if it weren’t for the determination of parents like Karen, who are currently laying the groundwork for the next generation.

http://www.canadaeast.com/ce2/hereroot/index.php?paper=here

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May 25, 2007 Posted by | aba, adult care, autism, Autism Connections Fredericton, Autism Society New Brunswick, education, Paul McDonnell, UNB-CEL Autism Intervention Training Program | Leave a comment

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.

May 25, 2007 Posted by | adult autism, autism disorder, autism residential care, Autism Society New Brunswick, autism treatment, Spurwink | 3 Comments