I was in the middle of posting on Facebook when I noticed how long my post was going to be and thought perhaps I needed to get this done on my blog which has been neglected this year. What better time to add a new post then on Autism Awareness Month!
My post was to point out 2 Awareness campaigns going on during the month of October. It is Breast Cancer Awareness month and in Canada it is Autism Awareness month.
I was curious about how much money is raised for these 2 causes and I found a lot of information on Cancer research but not a whole lot on how much is going into Autism research. I support both since Cancer is so devastating and impact so many people I know and love and Autism obviously directly impacts our family. So I thought I would do a little investigating and share some information.
I found a good article on Cancer and the issues surrounding research and it helped with my concerns with how much money goes into cancer research and how much good is coming from it. I have and will continue to support Cancer research and this article really helped to explain the way research funding is used and the difficulties in finding a cure.
I did not find something that even tells how much money is going into Autism Research but in all fairness, money is needed for much more than finding a cure or cause. Money is needed for programming, respite, therapies, education, EA’s, specialized education for teachers and EA’s, long term care facilities (there is an adult housing crisis) and the list goes on and on. A cure would obviously get rid of these problems for the next generation which is good but in the meantime, there are 1 in 68 children and now adults too with huge struggles and they are expensive struggles. This is a widespread complex problem that needs a lot of attention. I really had a hard time finding good information but found an article on what some US Autism organizations do with the money they raise.
I do know a bit about our local organizations. In Niagara there are a few charitable organizations that I know a little about and I will share only what I know of each. Autism Ontario – Niagara, Autism Community, Bridges for Autism, Autism Speaks Canada, Bethesda, and Community Living.
Autism Ontario – Niagara has been a huge source of support for our family and pretty much all the families struggling with Autism diagnosis’s. They are one of only a few limited places that will provide programs like camps and social groups. Their fundraising events are targeted to maintain those needy programs. Some of the money they raise does go to the head office in Toronto so not all of money raised stays local but most of it does and they do have a small staff to pay salaries to.
Autism Community is new and one that I was a part in founding. We have had a couple of successful Evan’s Ride for Autism fundraisers and have some money now to spend. We are determined to keep this money dedicated to directly impacting local families but do not want to compete with what other organizations are doing so we decided to focus our attention towards anxiety. We are funding a program called “Facing your Fears” which is a therapeutic program run by Dr. Ward at Phoenix Centre. Though there are many ways to help children with Autism learn skills, anxiety can impede success. “Facing your Fears” teaches children how to manage their anxieties so that they can get out to school, social groups, have courage to ask questions, make a phone call to a friend and join a team! We have no staff so the only admin costs we have is directly related to Evan’s Ride and Facing your Fears. We hope in the future to build more resource materials surrounding managing anxieties to offer to families online as well as through programming as we grow.
Bridges for Autism is a small local non-profit as well that have had a lot of exciting things happen recently that will enable them to begin to provide an incredible service to families in a great facility at the Pen Centre. I have copied from their Facebook page what they are looking to do.
“Respite, Programs and more. Please stay tuned as to what will be offered at this location. As this is a mall we will utilize this location for both specialized programs for autism & related special needs and in part determined days and times will be regulated and inclusive to siblings and non autistic children. A time and place for inclusitivity is valued by Bridges for Autism. Programs and activities will address fundamental movement, sensory and fine motor skills to start. This has great benefits to all children. Early in the new year we hope to attain more community partnerships and funding to expand to Autistic youth, Autistic adults and adult related special needs. This location will provide needed respite and more to autistic Individuals and their families as well as have spaces for autistic Individuals & their families from out of town coming to the Pen Center and surrounding areas to shop, go to the movies, restaurants beauty salons and much more. For those families it will be best to call ahead for an opening and arrange before travelling for the service. All the particulars for this initiative will be posted before we open the doors to this pilot location”
Autism Speaks Canada is one I know little about since I have not had any involvement with the organization. As far as I know they are more of a National effort to raise funds to aid in research and provide grants to other service organizations as well as Awareness promotion. This organization does have more overhead and I really do not know for sure how much of funds raised locally will be used in the Niagara Region.
Bethesda is not specifically geared towards Autism Services but towards people of all disabilities but they do provide many services that families are dependant upon, some of which are specific to Autism. They provide the government funded IBI therapy for children approved, they provide behavioural consultation services, various respite for children with autism including summer camps and week day and Saturday respite programs. These programs are really cheap to parents and valued but have a 3 yr. cycle in which parents are able to use one short term program only approximately every 3 yrs. Bethesda also provides the adult supports for the entire Niagara Region including behaviour support, respite and group home housing but their waitlists are quite astronomically long. It is a huge undertaking to be one of only a few providers of most adult support in the region so they are busy over there and are a great example of how funds raised are used to support the local community!
Community Living – St. Catharines, Welland, Port Colborne, Niagara Falls, Beamsville, West Lincoln, Fort Erie is also another organization that is not specifically geared towards Autism but are relied upon by parents of children and adults with Autism. Mostly this organization has helped me manage my funds I receive from the government, fill out paperwork for the funds and has provided our respite over the years. They also have day programs for adults with special needs to keep them stimulated and occupied during the days once they are done school. They also help families and individuals with special needs to plan for their future with goals and supports. Community Living also provide group home living accommodations but the waitlists are extensive as well.
This really is just a summation of my knowledge of the supports for parents of children and adults with Autism in Niagara from over 15 years of managing the lives of my two children and now adults with autism.
I know there is great competition to win your support financially this month with 2 worthy causes. I hope that I have been able to lend a hand a bit in what your options are.