NB VOTES

Analysis

N.B. can be a leader in autism services

Fourteenth in a series of expert analysis articles on major issues in the 2010 N.B. election

Last Updated: Tuesday, September 14, 2010 | 3:59 AM ET

CBC News

Paul McDonnell is a professor emeritus in the Department of Psychology at the University of New Brunswick. He is also a fellow of the Canadian Psychological Association.

McDonnell has spent more than 30 years teaching and conducting research in child psychology and in infant and child development.

In the past 20 years, McDonnell has taken a special interest in both assessment and intervention with children who have autistic spectrum disorders.

He is one of the founding members of the Canadian Autism Intervention Research Network.

McDonnell also has served as a consultant to the UNB autism intervention training program since its inception.

The story of autism in New Brunswick is both good news and bad news.

On the whole, services for persons with autism have dramatically increased in the past six years and that has made an enormous difference in the lives of children with autism and their families.

That is the good news. Where we have failed is to recognize the legitimate needs of adolescents and adults.

In comparison with other provinces across Canada, the availability and quality of treatment services for young children is exceptional. Let me take you on a short tour of what we are now doing and explain why it is superior to what happens in neighboring jurisdictions.

I will also point out where we are lacking needed services.

We are now entering our sixth year with funded intervention services for pre-schoolers with autism and our fifth year of training teaching staff in schools throughout the province. Both the Bernard Lord and the Shawn Graham governments have supported the services described below.

In large measure the justification for funding these services lies in the substantial amount of evidence now available that shows that children with autism benefit, in some cases dramatically, from intensive behavioural therapies.

Of course it is critical that therapists and clinicians are adequately trained to implement these specialized treatments with fidelity. Since 2004, training has been provided primarily through programs offered by the University of New Brunswick College of Extended Learning.

New specialists

In 2004, we had almost no trained therapists in this province and over the past six years we have trained close to 800 therapists/clinicians to work with pre-schoolers or school-aged children.

The arrangement is that treatment services for pre-schoolers are delivered by privately-owned agencies, but the funding is provided by the Department of Social Development.

A finely-tuned program of therapy is developed for that child by the agency and he or she will receive 20 hours of therapy each week.

There are front-line therapists called autism support workers and their work is closely supervised by a clinical supervisor, who is usually a speech language pathologist or an occupational therapist.

Intensive therapy

Current research shows that intervention programs need to be intensive with a minimum of 25 to 30 hours for most children.

It may be surprising to readers that programs need to be so intensive. However, the problem with autism is that the disorder affects their ability to learn in spontaneous ways.

We all see that typical children are learning constantly. In a typical week a child is awake for about 90 hours or so and a typical child is learning for almost all of that time.

Every social interaction and every play opportunity is a chance to learn.

Left to their own, and without adequately structured programs, children with autism do not learn at anywhere near the same rate. This means that every week they are falling behind.

We need to engage these children in active learning for a sufficient number of hours every week until they are capable of learning independently.

Research studies have indicated that different children may require different levels of intensity but all have suggested that 25 hours per week or more is required for best outcomes.

Flexibility needed

We currently fund 20 hours per week for all pre-schoolers but, presently, there is no flexibility for agencies to allocate more hours if needed and reduce hours as needed.

This kind of flexibility would help to optimize our resources.

Another excellent feature of autism services in New Brunswick is that treatment services have been extended from the pre-school agencies through the school system.

Transition to the schools from the preschool services is now as seamless as possible.

Today, we have trained several hundred teaching assistants as well as resource teachers. These individuals are able to carry out and supervise intervention programs in the schools.

All of the treatment services offered to preschoolers and to school-aged children have been made available equally to anglophone and francophone populations and, as well, across rural and urban families.

As a result a province-wide system has been established that provides a standard for training and ultimately intervention. Many other provinces have not managed to establish a uniform provincial system and standards.

Other support

We are also committed to the idea that parents need training too, and need to be as well educated as possible in order to support and participate in intervention programs for their children.

Parent training was included in the initial two years but has not been maintained in the current program.

The research today has indicated even more clearly that parent training is a key to success so we know we have to do more in this area.

Another achievement is that there are no significant waiting lists (e.g., not more than three to four months) and all pre-school-aged children are accepted so long as there is a diagnosis that places them on the autism spectrum.

This achievement contrasts dramatically with the situation in some other provinces where children are on wait lists so long that they never receive intervention.

New Brunswick's program currently serves about 300 preschool children plus about 1,000 children in the elementary school system.

Yet another achievement in autism services in New Brunswick is the development of resource centres.

The Department of Health has made funding available to support Autism Resource Centres around the province.

These centres provide social supports to parents, siblings, and others involved with any person with autism spectrum disorder (regardless of age).

Typically, the centres have books, video materials, appropriate toys, equipment for projects like laminating, printing, binding and other services.

Help still needed

What remains to be done? While we need to celebrate the achievements to date, we need to make a commitment to the needs of all families and all age groups.

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 behaviorally trained supervisors and therapists.

Some jurisdictions in the United States have outstanding facilities that are in part funded by the state and provide a range of opportunities for supervised and independent living for individuals with various disabilities.

The costs of not providing such services can be high financially and in terms of human costs.

As a psychologist in private practice I know there are large numbers of older individuals who are diagnosed later in life with Asperger's Syndrome that have no access to professional services of any kind.

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 can do much, much better.

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.

In conclusion, New Brunswick has one of the most advanced intervention programs in Canada for children who are on the autism spectrum and the benefits for the children and their families are exceptional.

Many families have moved to New Brunswick for services and, as well, many professionals have moved here because of the opportunities provided by this program.

There are excellent cost-benefit studies that show that the taxpayers of New Brunswick will save money in the long run as a result of the present investment in our children.

Of greatest importance, over 1,000 families across the province are receiving daily benefits from the interventions and support received.

Given what has been accomplished, New Brunswick is poised to take on a leadership role in autism treatment services in Canada.