Public Awareness

Recent Presentation

The following is a presentation given to the Rotary Club of Charlottetown on behalf of young people with autism on Prince Edward Island.

A similar presentation was also presented to the Honorable Pat Binns, Premier of Prince Edward Island in the summer of 2005.

Have you ever wondered what happens to all our beautiful children with disabilities we support and fund raise for, once the children are over the age of 18, and what happens they leave the school system?

For a young adult with autism on PEI, the doors appear to close tight. The meager resources of existing services are unable to meet the needs of someone with autism.

They do receive some help for the Disability Support Program Vic referred to, and since just before the last election a change was made to the program, and now once they reach the age of 18, the families of these young adults are no longer income tested, which is a great relief.

However, there are currently no services to buy with the small funds they do receive. For someone with severe autism, who cannot live in their family home and requires 24 hr a day supervision and supports in whatever they do, the costs associated with this type care is over $100,000.00 per year.

Families are finding themselves overwhelmed at the magnitude of this number and what are they going to do. How can they manage this for 1 year let alone the rest of their adult child.s life?

Families wonder what their child do all day, when they leave the school system and there is no place for them to go on a daily basis, with nothing meaningful for them to do. What then? Up to the age of 21 our children went to school daily and the school system provided a meaningful learning environment for them, integrated along side their peers.

When they can no longer attend school, will their mothers or dads be able to continue to work or will they now have to quit their jobs to stay home to care for a now 21 year old?

They wonder, what will happen to their adult children once they themselves die? The province has told us they will not own anymore group homes, so where will they live? The existing homes are full. Who will take care of them? Who will love them? Who will care, or notice if they are sick or if being abused? The latter is a terrifying concern for parents who have non-verbal children, who cannot tell anyone when something goes wrong.

When will they as parents, ever be able to retire from 24 hour 7 days a week care? Or will this go on when they are in their 80.s and 90.s and then what? How at this age, can they hire and train workers and supervise programs has they have to do now, to provide a life for their adult children with autism?

These are the questions that are terrifying to parents.

We know from the experience of families who have gone before us that if nothing changes from today, the future is very bleak, and that because of the severity of behavior and communication for many with autism, without appropriately trained support, they will regress; the system will institutionalize our children and even sedate them. They will end up in Hillsborough Hospital.

The first of our young people with autism who were fully included in regular classrooms, and fully included in their communities while they were growing up on PE,I have now graduated from the school system. We must make sure institutionalization will not happen to them or any of our disabled children.

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 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?

This is a reality for young adults with autism on PEI

To make a positive change for the future and to safeguard the futures of our young people with autism,

Families and friends, and professionals have come together to create the Stars for Life Foundation.

The Stars for Life Foundation for Autism.s mission, is to create life long living and learning opportunities for young adults with autism on PEI, while remaining fully included in their communities.

We have a wonderful voluntary board of directors who include people like Mike Schurman who now has a grandson with autism, friends Roger Birt & Steve Connolly, Kevin Lewis, Glen Huges, Debi Forse, & Vianne Timmons, Ab Ferris , Alan Brennan who has a young son with autism, Jim Travers who also has a son with autism, and Bob & Carolyn Bateman, John & Joan teRaa and Don & Diane Murphy, the latter 3 families also have a young adult with autism and need the help this foundation can offer.

Our goals include creating opportunities for these young people to continue their education, provide jobs, and job skill coaches, hire an autism co-coordinator, who.s job will be to hire the one on one support workers, and create and supervise programs for young adults with autism. Autism trained one on one support will be provided where necessary so these young people can remain active participant in their communities. We will provide integrated homes for young people who require 24 hour a day supervision so their families can know when they are no longer alive, their children will be living somewhere safe, and have a sense of belonging and self worth.

We plan to start businesses for them, so they will have a place to work, and become self-sufficient. To accomplish, this we plan to start a tree farm, and build a green house.

These types of businesses will not only provide them with jobs and a sense of self worth, it will help keep them connected to their communities and to their non-disabled peers as well. They will be able to sell their products in places such as, the farmers market or to the grocery stores. Making them valuable citizens of PEI.

These young people can work in any aspect of the businesses with the help of their job coaches all the while working alongside non-disabled peers.

We are currently making plans for the development of the first of many homes across PEI. House plans are currently being drawn, and land is being located.

To accomplish all this, we must raise $5 million dollars. A huge sum I know. We have no choice, failure is not an option. The safety and well being of our children.s lives is what drives us and our adult children are depending on our success.

We hope to do the major portion of this fundraising through endowments.

Raising this type of money will mean the Foundation will always exist and provide for the young people with autism spectrum disorders on PEI into the future, beyond the lives of their parents.

We have over 200 kids on PEI with autism spectrum disorders who will need our help in some way, at some point in their lives, and if the epidemic of autism does not stop, or they cannot find the cause or a cure, we will have many more.

This past summer with Easter Seals help we provided families with a one- day symposium on autism with guest speakers who were world-renowned in the field of autism. It was incredible to think we were able to get this caliber of doctor on PEI to talk to parents and professionals. It was with thanks to one of our board members Alan Brennan of Kensington who made the initial contact with one of the doctors that enabled the ball start rolling.

This summer as well with the help of Easter Seals we established our first small entrepreneurial venture, we marketed to the tourist industry bottles of .Red Island Sand. They retail for $5.00 and wholesale for $2.50. A sample I have here with me. Just in case any one has a need for corporate gift giving or has a business and would like to sell them in their shops.

This project has gone over well. This past summer it provided a summer job to one young adult with autism and provided a meaningful activity for children as well. We had parents using the filling and capping of the sand bottles as part of the fine motor skill development in their ABA (Applied Behavior Analysis) programs. We had one little guy who learned to wash and sift the sand and bottle it on his own and presented me with an invoice for his work from .Roddies Construction.. Then he learned that a cheque was in fact just like money and he could take it to the bank and cash it and use the money for a toy he was saving for. It was a wonderful learning experience for kids of all ages.

We intend to market our sand bottles this winter through Meetings PEI and next summer as well across the Island tourist spots, and we will continue just as long as the kids enjoy it, and there is a market for the bottles of sand. It is a win, win situation. The kids get a job or an educational activity, the tourist get to take home a piece of the Island in an attractively packaged bottle and any profits go back into the foundation to create future supports for these young people.

One thing I would like to say is that, with the establishment of this foundation, and the help of such a committed board, I know anything is possible, and just knowing the foundation exists and there are people who care what happens to our young people with autism give families hope that there is a light at the end of the tunnel.

We have come so far in the past 15 years, from the time when most people had never heard of autism or did not have a clue what it was, to where on PEI just about everyone knows what autism is and what a devastating disorder it can be for children & their families.

We have a wonderful role model like Brad Richards who has a nephew with autism and who has lent his support to the autism cause on PEI. This will make a huge difference in the work we want to do on PEI and the understanding it will bring to autism. We thank Brad and his family for their kindness and support.

We would like very much if the Rotary would consider re-establishing the March of Dimes in PEI.

Our young kids with disabilities are growing up, they are still disabled and they need your help as much now, as they did when they were kids & maybe now even more.

They need to know that someone still cares.

On that note I must end. I thank you for listening & thank you to Rotary for this opportunity

Thank you

Carolyn
President
Stars for Life Foundation