Public Awareness
Recent Presentations
Rotary Club of Charlottetown - Summer 2005 and Hillsborough Rotary Club - November 2006
Latest Presentation
December 7, 2006
Senate Committee on Autism
Presented by: Carolyn Bateman, Co-founder and past President of the Autism Society of PEI; Co-founder and President of the Stars for Life Foundation for Autism and parent of a 24 year old with autism.
Presentation:
In Prince Edward Island there are very serious issues with regard to the lack of services and supports for children and adults with autism spectrum disorders. Families and support groups see three main issues that are jeopardizing our children.
These issues are having a profound effect children’s outcomes and have left families demoralized, exhausted and in many cases in serious debt.
The first is with regard to IBI/ABA treatment.
In Prince Edward Island families receive their medically prescribed IBI treatment under a social program where they are income tested. PEI has the dubious distinction of being the only province in Canada, which has placed the burden of income testing this medically necessary treatment on families.
Family’s gross salaries are taken (not their take home pay) less any RRSP’s and a 3 thousand dollar credit for each dependant child. Families cannot even deduct a dependant spouse who in all likelihood left a job to stay home to take care of their child with autism. The level of support has been set on such a declining scale that IBI has become essentially a welfare program for low-income families in the province. Families in PEI have had to mortgage and re-mortgage their homes to provide for their children with autism. The scale is set at a rate that even a high-income family of 4, trying to provide all that is needed for a child with autism would be living below the poverty line.
Added to this, the province will only support 20 hours per week for a child’s medically prescribed treatment of 40 hours per week, leaving families to try to provide the balance of treatment on their own.
In this country, we do not provide only half the medically necessary treatment for a child with cancer, nor do we income test families before their child can receive treatment. Why is this allowed for children who’s biological illness happens to be autism.
One good thing about the Disability Support Program in PEI is that it provides individualized funding, so families can decide how best to provide for their child, but this is a double edged sword. It also places the added burden on families who not only have to care for their child with autism 24/7; they now have to become employers. Families are expected to hire, train and supervise therapists on their own, and due to Revenue Canada and Provincial Laws, families must make remittances of CPP, EI, Vacation Pay and Workers Compensation for their therapists and all this out of the few support dollars provided to them. This leaves them with only close to minimum wage to pay therapists, making it impossible for families to hire and maintain qualified therapists.
To add to the family’s stress is the long waiting list for assessments and then another long waiting list for treatment that can be over a yearlong. Children are losing valuable time, which they will never get back, and which will have profound affect on a child’s outcome and destroy their chance at life.
Secondly is the availability of speech therapy: For children with autism who by its very nature have profound deficits in speech and communication, only a token amount of speech therapy is provided to a pre-schooler. For children in the school system speech pathology is provided only for a few weeks of the year as therapists rotate schools in the province. The system is totally ineffective for a child with a profound communication disability as is often seen in autism.
This has resulted in parents trying to pay the $70.00 per hour rate privately to make up the shortcomings. This cost to families is not taken into account when families are being income tested for support dollars they receive for their child.
It is incomprehensible indeed inhuman to me, to fund this service at level that it will leave a child for the rest of their lives without the ability to speak, or provide a child with a solid alternate communication system.
Thirdly the capping of support dollars at a level that when these children leave the school system they have no hope for any sort of a quality of life beyond the lives of their families.
The first of our young people with autism in PEI who were successfully included in regular classrooms and who were fully included in their communities are now leaving the school system into an adult world where there are no appropriate programs or supports in the province for these young people to continue their education, have a job or ever live outside the family home.
Parents wonder what will happen to their adult children once they themselves are no longer able to care for them. We have been told that the province will not establish or operate anymore group homes, and the existing homes are full. Where will these young people live? Who will take care of them? Who will love them? Who will care, or notice if they are sick or being abused? The latter is a terrifying concern for parents who have non-verbal children with autism, who cannot tell anyone when something goes wrong.
When will parents be able to retire from 24/7 care? Will the parents still be caring for their children in their retirement years, when they are in their 80’s and 90’s? How, at this age, will they be able to continue to hire and train workers and supervise programs to provide a life for their adult children with autism?
These are the questions that are terrifying for parents.
We know from the experience of families who have gone before us, if nothing changes from today; the future is very bleak, without appropriately trained support, these young people will regress; the system will institutionalize our children and even sedate them. Is this what the future holds for our young people with autism whose families and education system worked so hard to educate and integrate into the main stream?
Can you imagine telling your non-disabled son or daughter, when you finish high school, you will never have a chance to continue your education, you will never have a chance to hold a job, you will never have a chance to go to a movie or have a friend or ever experience living outside your parents house, and your only entertainment will be sitting in front of a TV for the rest of your life?and that is ok with your community?
Families in PEI feel they are now on their own to try to take up where government has failed them.
To address the pressing needs, families in PEI have come together and have founded the Stars for Life Foundation for Autism.
The Foundation’s mission is to safeguard the future of children with autism by working to provide life long living and learning opportunities while helping them remain fully included in their communities.
Our goals are to provide continued education; create activities where challenging jobs will be enjoyed, such as a building a green house and a tree farm; and build homes across the Island where aging parents will know when they are no longer alive their children will live somewhere happily & safely and have a sense of belonging and self worth.
To do all this we must hire job skill coaches, hire an autism co-coordinator for adult services who create and supervise programs for young adults with autism in order to take the pressure and stress from families.
Our greatest roadblock to providing these services for our young people with autism is the arbitrary cap on support dollars put in place by the province.
The cap is set at $36,000. per year, and that only for only the most severely disabled of PEI, for those who require 24 hour care.
It is well documented that it costs up to $100,000 + per year for person with severe autism, who requires 24 hr. a-day supervision and supports, to live outside the family home. How are families on their own going to be able to make up this short fall?
The foundation recently was successful in applying for a grant from the federal/provincial initiative on homelessness, but we lost those grant dollars recently toward the building of the first home. That was directly due to the cap created by the province. We could not prove sustainability for staffing the home with only enough support dollars to individuals to cover costs for only a 1/3 of the day.
The foundation is willing to do whatever it takes to raise funds to build the homes as well as provide the services necessary to provide meaningful lives for young people with autism on PEI. But we also need the province to provide funding at the same level that the province supports those in it’s own provincially run group homes. Supports such as the province of Ontario provides to the homes for young people with autism in Kerry’s Place.
We need the federal government to put autism IBI treatment under Medicare and to create a national disability support program of individualized funding for those who through no fault of their own have a life long disability.
We have a responsibility to provide meaningful lives for our most vulnerable citizens of our country. A national disability support program is in place the USA. And I know that it is possible in Canada.
All we need is the political will.
One in 166 children in Canada is now being diagnosed with an autism spectrum disorders, an outstanding 1 in every 104 boys. Every 20 minutes another child is being diagnosed with autism.
Silently 1 in 166 of our children are being kidnapped by autism and to suffer with their symptoms for the rest of their lives, without a national plan for treatment, and where our existing provincial government services are woefully inadequate and destroying lives.
Families are not asking for a trip to Disney World for their children, but to help their children have a chance at life.
A chance for a child where they will not fall on the floor and scream in pain at the sound of a vacuum cleaner, a chance for a child to be able to learn and understand how to play. A chance so a child will be able to accept a hug from their mother. A chance to control the urge to flee so they do run into a street and be hit by a car, a chance to learn to speak so they can say I love you to their parents or tell someone when they are sick or a in pain. And when they are older will have a chance to learn to become more independent and a chance to feel self worth and a sense of belonging and know someone cares enough so they will not be sent to an institution or other inappropriate setting when their parents are no longer able to care for them.
These are things no human being should be expected to live without.
We beseech you to do everything within your power to make a change for our children with autism. Please be a champion of their cause. Please help find the political will to make a change.
Thank you
Carolyn Bateman
President
Stars for Life Foundation for Autism