Kathy’s story: A home of her own
The following story appears in CLBC’s new safeguards resource “The Power of Knowing Each Other: Stories about Informal Safeguards told by BC Families“. Developed by CLBC and the Family Support Institute (FSI), the book is meant to inspire and stimulate people’s thinking about informal safeguards.
Bonny Klovance is a pioneer in the community living movement, well-known for her long time contribution, advocacy and commitment to rights of people with disabilities. Bonny’s daughter, Kathy, spent many years living in an institutional setting. Kathy is now 53 years old and has a very active life in the small town where she lives. Kathy has her own home and the people who support her have been instrumental in assisting her to develop relationships in her community.
Kathy enjoys spending time in her community.
Bonny contracted German measles before she knew she was pregnant and Kathy was born with congenital rubella syndrome. Kathy was born at a time when there were no community services and supports for children with special needs or their families. Before she was one year old, Kathy had experienced many medical problems and her developmental delays were obvious. Kathy did not receive a diagnosis of autism until she was 12 years old.
It was incredibly challenging for Bonny to raise Kathy at home without support. After researching ways to help Kathy, the family learned about a chiropractic hospital in Colorado. With the financial support of Bonny’s parents, Kathy spent two months in Denver where she had her second birthday. Bonny feels the treatment made a huge difference for Kathy assisting with her medical problems and helping her to develop large motor skills such as sitting and walking.
When Kathy was four years old, her family learned she was hearing impaired. Even though it was determined she had enough hearing to talk, she has never used words to communicate. A doctor recommended that Bonny consider placing Kathy in Woodlands – a large institution for children and adults with disabilities. The wait list was about five years at that time. Kathy went for a one-week assessment at Woodlands and came out with two black eyes. For Bonny, Woodlands was no longer an option.
Bonny did the best she could to help Kathy grow and learn at home. Kathy screamed and cried when asked to do new things, but Bonny continued to encourage Kathy to learn. When she was six years old, Kathy attended a school for “handicapped” children operated out of a church basement. Kathy’s oldest sister walked her to school in the morning and Bonny picked her up by noon. Kathy attended the school three days a week, but only for about six months because her family moved to a different community. Bonny was preparing to advocate for Kathy to attend public school in their new community when the Endicott Centre opened. It was a school about 80 kilometers away from their home and Kathy was one of the first students to attend. The Centre operated like a boarding school – Kathy lived at the school and went home on long weekends, holidays and for the summer months. Bonny remembers feeling so relieved that Kathy could finally go to school.
Kathy lived at Endicott Centre through to adulthood. She developed a number of skills and learned to use a visual communication system. The number of people attending the Centre increased significantly over the years and as Kathy matured, she became extremely unhappy. She expressed her frustration by harming herself and destroying property.
As institutions began to close, Kathy was moved into a group home with three other individuals. Her housemates required such a high level of support that Kathy’s own needs were often left unmet. Kathy continued to express her unhappiness through self-injurious behaviour. Bonny retired as a teacher and decided to bring Kathy back home to her own community. Kathy moved into a home with another woman, but it turned out they were not very compatible. The other woman was aggressive toward Kathy and the support staff. Kathy’s response was to hurt herself. Bonny used her influence as a member of her local and regional associations and the BC Association for Community Living to get what Kathy needed, and the professionals involved came up with a creative solution that continues to work.
Kathy’s parents bought her a house where she lives by herself and five compassionate, skilled support workers provide care for Kathy in 24-hour shifts. These long shifts eliminate staff changes and unsettling transitions in the middle of Kathy’s day. Although it took some time, Kathy’s self-injurious behaviours began to decrease as her world opened up to include employment, a large social network and a variety of community activities, all organized and provided by her support workers.
Kathy’s workers live in a tiny community north of the town where Kathy lives. As the staff work 24-hour shifts, they often include Kathy in some of their usual activities during the time they spend with her. Their families have welcomed Kathy into their lives and have become like extended families to her. She especially enjoys spending time with the children who are members of their families. A husband of one of her workers plays in a band and Kathy, who loves music and dancing, travels around with the band to their events. Another worker is very involved with a theatre group and Kathy sits in on rehearsals and productions and is considered part of the group. She is also involved in an improvisational dance group that has incorporated Kathy into their activities.
The support in Kathy’s life reflects her personality. She is “a night owl” and enjoys staying up late. It takes her about two hours to get ready in the morning because she has a very specific routine she likes to follow. Kathy loves to socialize now and is the “life of the party.” She does not enjoy spending time in large groups of people with disabilities, other than Special Olympic bowling. She loves going to the pub where everyone makes a fuss over her and she never misses a dance at the community hall.
Kathy is so well accepted by all her support workers’ families and friends that she has become part of their communities, as well as the community she lives in. She had a job that involved picking up and delivering mail. This has made her well known in the community. She retired from her position when she was 50 as she wasn’t too thrilled at having to get up early enough to get to her job on time. She enjoys walking to the local drug store by herself where she buys snacks, puzzle books, cosmetics and ‘smelly things’ which she loves. Store personnel accommodate her idiosyncrasies as Kathy’s disabilities sometimes result in using loud vocalizations to express her needs.
When Bonny moved to the coast ten years ago, Kathy’s older sister, Cindy, continued to monitor Kathy’s living and medical situation since she lives and works nearer to Kathy’s home. Cindy also phones and visits Kathy and takes her on excursions as Bonny has done in the past. Kathy also has two younger sisters, Diane and Wanda and a younger brother Joey. She often visits Diane’s home where she has been introduced to Diane’s friends who have now become her friends, as well. Diane has taken Kathy to visit her inlaws who have come to consider Kathy part of their families.
Wanda and Joey have always treated Kathy as an equal, so others in their circles do too. Because of her brother and sisters, the circle of people who know and care about Kathy has grown significantly. Bonny celebrates the changes in Kathy’s life over the past fifteen years – living in her own home with flexible, community support has allowed Kathy to grow and develop as a person. Along with her own family, Kathy now has a very large social network of people who know her as a member of their community and as a friend.
“The Power of Knowing Each Other: Stories about Informal Safeguards told by BC Families” can be viewed and downloaded on the CLBC website under Individuals and Families > Safeguards. If you are interested in requesting a copy of the book, please e-mail info@communitylivingbc.ca.
