Terry and Guyanne, Alyson and Kaitlyn
The Smoke Family
My name is GuyAnne Smoke. My husband, Terry and I are the proud parents of two beautiful daughters. Alyson is sixteen and Kaitlyn is eleven. Our oldest daughter, Alyson, was born deafblind and she has spastic quadriplegic cerebral palsy. Alyson communicates with some augmentative communication aids and she has some modified sign language. Because Alyson is deafblind, she needs an intervenor who acts as the link between her and the world around her. The intervenor serves as eyes, ears and voice (interpreter) for her as well as her hands and feet because of her quadriplegia. Alyson is a dynamic young woman who loves life to the fullest. With proper intervention, Alyson has a full social calendar, she has an amazing sense of humour and she has hopes and dreams of someday living in her own home with a roommate, working and volunteering.
As parents, we all want our children to achieve their goals and be happy and productive adults. Although we continue to encourage Alyson to dream about what she wants in the future, as parents, we worry that these very simple future goals that Alyson has may be difficult for her to achieve. With Ministry funding cuts and wait lists, the future is very scary for people with disabilities. Not only are they forced to live below the poverty line but supports for those with physical and/or developmental disabilities are inadequate and often completely unavailable. As her father and I age, we worry about how we will be able to continue the extensive care that Alyson needs 24 hours a day. We know that, without proper intervention, her life will be very bleak. She is now at an age where she wants to be with her friends, independent of her mother and father. This is normal development and we wish nothing more than to be able to have the intervention in place for her that would allow her to have the independence she wants and needs in order to thrive as a young adult. Also, most of our friends with children the same age as ours are now starting to have some freedom where they can be a little more spontaneous with their own social calendar. Unfortunately, this is not mine and Terry’s reality. Although our youngest, Kaitlyn, is able to stay unsupervised now for short periods of time, we will never have that luxury with her older sister. We always have to have educated, trained people to care for Alyson when we are working or trying to have our own life as individuals or as a couple. Even family outings can be difficult when we do not have an intervenor for Alyson. She needs constant and consistent one to one assistance or she gets very frustrated and lashes out. Although her sister loves her, this has often been difficult for Kaitlyn. Something as simple as family movie night is something that we have not ever been able to experience in our family. We also worry because Government funding has not been equitable for families. Families have not been allotted and therefore have not been able to offer support staff cost of living or salary increases since the inception of Special Services at Home. This makes sustaining qualified and trained staff very difficult for families. I cannot think of any other discipline that would expect staff to work for 20+ years without ever receiving a pay increase. The choices that families are left with are either not giving a raise, which most often makes retention difficult, or to reduce the hours of support your child gets in order to give pay increases – which almost seems like a punishment to the individual receiving support and their family. Our dreams for our daughter, Alyson, are not different from those for our daughter, Kaitlyn. We want them both to have happy, fulfilling lives. Our biggest fear is of what would happen to Alyson if we were not here to care for her. I wish the Ministry would make it their priority to be pro-active rather than re-active. It is imperative that MCSS invests in the future of people with disabilities by increasing funding available for supports, diminishing wait lists and increasing services. I implore the Ministry to take action and show our society that every member of society is equally important and deserves the right to live life to the fullest. It is shameful that the most vulnerable of our society is the one that seems to live below standards.
March 4, 2010