Tuesday, July 21, 2009

Letter to Premiier McGuinty

Maria Bunda
Hamilton ON

July 20 2009

The Right Honourable Dalton McGuinty, Premier
Legislative Building
Queen's Park
Toronto ON M7A 1A1

Dear Mr. McGuinty

I'm writing to you as a concerned citizen and mother. The number of children diagnosed with autism in Ontario has been steadily growing. When my son was diagnosed with autism four years ago, I was told by his doctor, Peter Szatmari, that 1 in 360 children were being diagnosed with autism. Now, that number is 1 in 150, possibly even higher. Recent studies in the UK showed that 1 in 60 children is within the autistic spectrum. I understand that, according to the Ministry of Children and Social Services, the amount of money spent on therapy programs for autistic children tripled in recent years. It did not escape my attention that the number of children receiving therapy has only doubled. The waiting period to receive therapy also doubled in this time. My son received funding after two years of waiting. Now, the average waiting period has increased to four years.

It is scientifically proven that about 50% of children who receive early and intensive, forty hours per week intervention therapy based on Applied Behavioural Analysis improve so much that they are no longer classified as "autistic", and can join mainstream classrooms. The other 50% of kids show great improvment in their level of functioning, and require less support as adults. The difficult reality in Ontario is that only children of parents who can afford the high cost of Intensive Behavioural Intervention therapy can receive it in a timely manner. Other kids wait, missing their window of opportunity for recovery, and silently slip into retardation day after day, for years. Even after the inordinately long waiting period, they receive only a fraction of the recommended forty hours a week treatment. Most kid receive twenty hours a week; some get even less. It has been proven that ten hours a week or less of therapy brings little or no results. After six months of treatment, children are assessed, and if they have not made enough progress, as defined in the Continuation Criteria document, they are cut off from therapy. This is what has happened to my son, Sebastian. The decision to take away his IBI therapy funding was made when he was five-and-a-half years old. Since he has now reached school age, in September he will be put in a regular classroom.

The school system in Ontario is not ready to accommodate the needs of severely autistic children like my son. He makes steady progress only in a highly structured environment such as that provided by the Behavioural Institute Children's college that he has been attending for over two years now. In this time he has gone from exhibiting severe self-injurous and aggressive behaviour to being a compliant child who can respond to basic verbal instructions. He has also learned fundamental life skills such as dressing, toilet training and feeding himself. He is now in the process of learning how to communicate with pictures. I am concerned that if his therapy is terminated before he masters a meaningful way of communicating, he will grow up to be a very frustrated teenager and adult--an individual who has not been able to reach his full potential.

This concern is raised after meetings with public school officials where it became clear that the school system is not ready or able to provide a level of support that is even remotely similar in quality to that which Sebatian is currently receiving in the Behavioral Institute Children's College. While the cost of providing IBI therapy for Sebastian is high, this short term cost will be far less than the alternative of lifelong assisted living arrangements. Apart from the economical logic of continuing his therapy, there is the issue of human rights, and my son’s right to a proper education. Autism is a disorder which, when met with the proper treatment, can allow afflicted individuals to become fully functional, and often highly valuable members of society. These same individuals, should they been denied treatment at the opportune early stages of socialization and biologic growth, will likely remain at a severely diminished level of functioning and life possibility. The current governmental policies fail to recognize the social crisis posed by autism and autism spectrum disorders and comprise a failure to address the basic human rights (to proper education and socialization) of afflicted individuals.

The cost of care for a low-functioning autistic adult, can be as high as $ 300,000.00 US per year, a cost that continues for many decades of their life. The yearly cost of $60-80 000.00 for therapy during early childhood years--as this is the most effective way to improve individual's functioning, and can even lead to full recovery--seems, in this light, to be a good investment.

There is no question in my mind that we are in the midst of an autism crisis in Ontario. Given the statistical rise in autism diagnoses, this situation will only worsen if action is not taken now to address the need for more and longer access to beneficial therapy programs such as those provided by the Behavioural Institute Children's College. Autism is a disease that destroys not only the lives of children afflicted with it, but those of their families as well. The divorce rate amongst parent's of autistic children is as high as 80%. Siblings of autistic children experience childhood in families living under crushing stress, financial pressure, and emotional turmoil. Autism silently corrupts family structure, affecting society for generations to come. The autism crisis requires a crisis response, not pseudo-solutions, political gesturing and excuses. Government needs to show great political intelligence and offer real solutions to meet this crisis. As the number of children not receiving adequate care grows, the frustration and despair of their parents mounts. I am just one such parent. My story is very typical of the experience of Ontario parents of autistic kids.

Sebastian now well established at the Behavioural Institute Children's College. Removing him from this highly supportive environment before he can communicate will have disastrous effects on his future. At Behavioural Institute Children's College he is supported by a team of highly skilled and efficient professionals who craft his program according to his specific needs, at a cost of about $70,000.00 a year. The School Board will receive about $62,000.00/year to supply Sebastian with a teaching assistant. This person's job will primarily be to prevent Sebastian from harming himself or others. Even if this professional is somewhat trained in autism-type disorders and therapies, he or she cannot replace a team of trained and specialized psychologists and therapists, such as the Behavioural Institute Children's College supplies.

The decision to share my struggles in raising an autistic child with the public via the internet was not made easily or without hesitation. I value my own and my son's privacy. But I am a mother. I have limited resources and I am running out of options. I am a mother and it is my duty to help my child to reach his full potential. I will not hesitate to sacrifice even more of our privacy to achieve this.

I have already written letters to the Minister of Children and Social Services, and the Minister of Education, but they have refused to speak to my concerns or intervene on Sebastian's behalf. I am thus asking you to address this issue, both on behalf of Ontario parents of autistic children, and in the specific case of my son Sebastian. Funds alloted to the treatment of autism should be used responsibly, in a manner that will be most effective for the individuals involved. I would ask to meet with you in person to discuss this matter further, and to give you an opportunity to meet my son, who is a delightful and precious child.

Maria Bunda

P.S. You can find more information about my son situation, discharge documents, videos of his therapy, as well as this letter on www.tooautistic.com

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