Dear Prime Minister Trudeau,
My name is Cindy, and I am the mother of a man who is locked up, even though he is not a criminal. I believe you have the key that might be able to set him free.
Kyle has severe autism and is twenty-eight years old.
Every door in our house has a lock preventing Kyle from entering that room (except for his own area) or leaving the house. This is for the protection of our possessions and his safety. Kyle cannot leave our home without supervision. On the days he is most anxious he stays home because staff wouldn’t be able to handle him one-to-one due to his nature of wanting to bolt when anxious. Kyle needs more staff than what he currently has to leave our house daily and have a life outside of our locked down home.
When Kyle is feeling well, he goes out into our community for drives, hikes, picnics, trips to the beach, marina, and waterfalls. Kyle would love to go camping, boating, fishing, four wheeling, and snowmachine but he would need extra staff to accomplish these dreams.
It is unusual for a man of Kyle’s age to still be living with his parents. Most of the men and women of his age and diagnosis in my city of 70,000 people do not live with their loved ones. Can you imagine Mr. Trudeau what it would be like to live without people who love you?
Some of these men, women, teenagers and children had parents who wanted to support their child, so they could continue living with their families. The parents asked the government for more funding to assist then in hiring staff to help with their child’s needs, and the government refused. The child and families began to deteriorate under the pressures of taking care of a person with special needs alone, or with minimal help.
The government’s solution: give us your child, and we will provide care.
Many families were forced to chose between working to support their family or staying home and caring for their special needs child who could not attend school or day programs. The financial strain and daily stress were overwhelming, and their children were put in private homes.
Recently we were offered full-time care for Kyle if we were willing to put him in a private home. This would mean his staff, housing, vehicle, food, clothing and medications would all be covered by our Canadian government. If we agreed, Kyle would no longer live with anyone who loves him. We refused this offer, knowing that Kyle wants to continue to live with his family who cares deeply about him.
My husband Vance and I are his primary caregivers. Vance works between 8-4 each day managing his family’s logging company from home, while Kyle’s staff cares for him. He receives eight-hour care. He was increased to twelve-hour care, but when some of the team members caring for others in private homes quit their jobs, Kyle’s staff was pulled to care for people who do not live with their family.
If Kyle’s staff is sick either Vance or I care for Kyle. As you can see it would be hard to have a full-time job and care for an adult with special needs. It would financially sink many families.
Due to the structure of Vance’s job we were able to make it through many years without staff and adequate funding. I am not exaggerating when I say it almost killed us. The strain was tremendous. Eventually, Community Living Algoma, a local organization, came to our rescue and gave us staff eight hours a day.
Kyle’s life improved tremendously, and so did our family’s.
When Kyle was given twelve-hour care for a few weeks recently, he had two staff that would overlap for a few hours a day. Amazingly they were able to help him to do things he had dreamed about for years. Kyle loves to swim but has too much anxiety some days to leave our home, let alone enter a public area. If Kyle does go out, often times he will try to bolt, and this puts him in danger. When he had double staff, they were able to take him swimming for the first time in ten years.
Kyle was making incredible progress, and then his staff was cut back. There just isn’t enough funding given to organizations who support special needs adults like Kyle if he lives in his family home. This problem could be solved and save Canada a great deal of money that could be used to save lives, house the homeless, bring clean water to reserves, or educate our youth.
Recently my husband Vance and I went on vacation. We try to take sanity breaks two to three times a year. This keeps our marriage together and gives us some sleep, and a break from the challenges of autism. While we were away, Kyle did not leave the house. His sister Charity and her husband Dan took care of Kyle at night, and his staff was with him during the day. He asked for us daily. Vance is the one who gets Kyle out to his van many days so his staff can take him for a drive.
As you can see our son has no desire to live apart from his family. He is loved to the moon and back by his siblings and parents. We try to keep our home toxin-free and also gluten-free since Kyle has celiac disease. Kyle eats organic food as much as possible and does not eat processed food. We have a room designed only for him which is waterproof since he overflowed his toilet so many times he flooded our house, creating a toxic mould environment. Kyle would not receive this kind of care in a government-funded private home.
We paid for Kyle’s staff for many years and want to continue to support Kyle financially. We will pay for one hundred percent of his care if we lose support, and are willing to do that, but eventually, we would run out of money. The cost of keeping him in our home is something most families cannot afford, and they would benefit from an in-home support programme. This would financially support the family in their desire to care for their child so they wouldn’t have to put their child in private care.
If Canadian families were given what they needed to help them live with their own special needs children, this would cut a sufficient amount of money from the government’s budget. Private care is expensive and required in some situations, but it is more cost effective to keep families together.
We are requesting Mr. Trudeau that you consider restructuring how Canadian money is being spent to separate families and loved ones, instead of keeping them together. A family can live separated, and their child’s care would be fully funded by Canadian dollars, or you can keep them together, and their family will contribute financially to their child’s needs.
Living with people who love you is priceless and not an option that is available to many of our special needs citizens.
Mr. Trudeau, you hold the key to giving these remarkable people like my son Kyle, freedom in Canada, home of the True North, strong, and free.
You have a voice: which is something they only dream they could have💗
- For those who follow my blog I usually sign under my maiden name of Cindy Seaton, but today I am Cindy Henson, Kyle’s mom.
Coins & Babble says
This is such a beautiful letter I hope you get your extra funding so he’s able to progress. Spreading socially for you 😘. From one ASD mama to another.
Thank you! You of all people would undrrstand💗