Kenyon Shaw is a young man who lives on Vancouver Island. This is his story in his and his family’s words about his life and how he came to live independently in his own home. It is also a story about how he and his family have planned for his future so he can remain living independently throughout his life.
Tell us a bit about yourself.
I have two sisters and three brothers and my mum and dad. I like to go canoeing and camping. I do personal training at the gym. I volunteer every week at the Society of Organized Services (SOS), and I enjoy bowling, swimming and curling. Best of all I love to use my iPad and iPhone to communicate with friends and family. I still enjoy my PlayStation but not as much as I used to. And I love to watch wrestling.
Where do you work?
I have worked at A&W for six years, never absent, never late. I serve coffee, clean tables and do dishes and help others, but most of all I enjoy chatting with customers who have become my friends. I currently work 18 hours a week but I would like to work more.
Where do you live?
In my own townhouse in Parksville on Vancouver island. I have a home share caregiver who lives with me and provides support for my daily needs. I call him my Buddy.
Have you always lived there?
I left the family home seven years ago and moved into my very own place, just like my older brothers and sisters. My mum and dad helped me to find this great place. They also made it possible for me to pay all my expenses through very creative financing without having to use the bank of Mum and Dad. I often do presentations with my Mum about how all this works. We have presented in many places in B.C. and even Ontario.
What makes you happy about your living situation?
I pay all my own bills myself — mortgage, strata fees, hydro, cable TV and phone, etc. – and I am very proud of that. I feel more independent although I have to rely on others when I get confused. It’s my front door and I decide who comes to visit. Sometimes the caregiver has to move on but I get to stay in my own home, which is great, while another caregiver moves in.
How are your parents involved in the services you receive?
I couldn’t have done this without them. They did all the legal work and have made my future secure. Mum goes to lots and lots of meeting.
What would you like to tell other people who want to live more independently?
Go for the dream, get help where you can, talk to other people who have done this and don’t be afraid when people tell you it’s an impossible dream.
Do you have any plans for the future you would like to share?
Yes, I want to get married but don’t have a girlfriend yet.
Doreen (Kenyon’s Mom)
When did your family start working on this housing option for Kenyon? How old was he?
We began to realize that we needed to find a solution for Kenyon’s future housing needs when Kenyon decided he didn’t want to live with mum and dad any longer. He was 25 years old. It then took us a further two years to put the idea of him owning his own home into action.
The main reason we chose home ownership for Kenyon is based on our philosophy of community integration and inclusion. That is, when there needs to be a change of care provider, it is the care provider who moves out and Kenyon stays where he is, thus reducing the trauma of moving home. Kenyon stays in his own home, his own community, his own neighbourhood, his own front door etc.
How did you work with CLBC to develop Kenyon’s housing option?
We didn’t work with CLBC for the initial housing plan, but for the support of a home sharing care provider contract. Originally, the Kenyon’s King Pins Microboard initiated and administered the home sharing contract. Two years later, we asked the Nanaimo Association for Community Living (NACL) to act as the host agency and to take over all aspects of the home sharing contract. That is working well and has helped to maintain a good working relationship between all of us. CLBC came into his home and did all the required safety checks etc., just as they would do under other circumstances.
What kind of personal planning did your family and Kenyon have to do to make this option work?
Most of the planning was around the legal aspects of home ownership and financing for a person with intellectual challenges. To ensure Kenyon’s future security, we established the KAS (Kenyon Alexander Shaw) Trust, the KAS Insurance Trust and the KAS Life Estate Trust. Each trust has a specific purpose but they all work together to ensure Kenyon’s future financial stability and well-being.
The KAS Trust is for ongoing personal extra expenses, vacation, travel etc. There is no money in that trust at the moment, but once the KAS Insurance Trust is realized (on the death of my husband) that money will automatically be transferred into the KAS Trust. The KAS Insurance Trust is the beneficiary of life insurance policy, easily transferred to the KAS Trust and not subject to probate of our wills.
The KAS Life Estate Trust is to register the townhouse for Kenyon’s use during his lifetime. This allows him to be eligible for the reduction on the home owner property tax, and allows for him to defer and send the debt forward to be repaid when the property is no longer needed, which keeps annual costs down. Once Kenyon no longer needs the home, the property will be sold and proceeds go back to the trust to be distributed according to the terms of the trust and current legislation.
The work of establishing the Trusts may sound daunting but having the expert advice from a lawyer who is knowledgeable on the Rights of Persons with Disabilities and Tax Law and Trusts can soon put your mind at rest. We were completely in the dark when we started this so if we can do it, you can too.
How does this option help your family feel about Kenyon’s future as he ages?
We know that all of his housing costs are covered by Kenyon himself through income from Persons with Disabilities (PWD) funding, volunteering and his part-time employment (18 hours week). The live-in care provider pays a monthly contribution under a License to occupy agreement. Kenyon also has an RDSP, and has created and signed his own will.
What kind of on-going work does your family need to do to ensure Kenyon continues to successfully live independently?
The main work is to maintain a lasting relationship with a home sharing provider. NACL does the hiring of Kenyon’s caregivers, but we (his parents) need to help make that a positive relationship.
We definitely need to put a network of support people around him. That’s ongoing work. We need to be vigilant to Kenyon’s ongoing needs. We are all aging together!
What are the good things about Kenyon’s living situation and what are the challenges?
His independence and feeling of self worth have soared. He is an integral part of the townhouse community, fully accepted and respected. He has definitely put his stamp on his home and decides when to come and go as he pleases.
The challenges are mostly around personal safety, but he uses technology to stay in touch. Mum definitely needed to ‘cut the apron strings.’
As far as Kenyon is concerned, he wants a wife to make his home complete!
Any advice for families who are looking to help support their family member to move into their own home?
I wholeheartedly recommend it. Follow the lead of your son/daughter and make the dream a reality. If you want help please ask us so that we can give you the tools we put together. We regularly volunteer our time to help others and would be happy to share.
Find out more about planning for your loved one’s future
Safe and Secure Book – Seven Steps on the Path to a Good Life for People with Disabilities is an inspirational guidebook for parents and other family members who are concerned about the future of their relative with a disability, particularly after the parents are gone. Read the book here.
Registered Disability Savings Plan (RSDP) – A Registered Disability Savings Plan (RDSP) is a long-term savings plan for people with disabilities. If you have a disability, you may be eligible to open an RDSP. You might have someone help you apply for the RDSP, or someone that applies for it on your behalf.
Public Guardian and Trustee (PGT) – The PGT is a B.C. Government corporation that has a mandate to protect the legal, financial, personal and health care interests of adults who require assistance in decision making. You can find out more about their services, including financial management and decision making, and estates and trusts, by visiting the PGT website.