Lydia Kang originally developed MyBooklet BC for her daughter Julia (above) to share information about her strengths, goals and interests, like singing, and to provide to CLBC to help with planning services.
Sitting comfortably with a cup of tea at her dining room table in her Langley townhouse, Lydia Kang talks sincerely about how developing MyBooklet BC with the Family Support Institute of BC (FSI) and Community Living BC (CLBC) changed her life and her perspective forever.
“Through my work on MyBooklet, I met a group of self advocates for the first time. They were passionate, direct and able, and the way they communicated changed me. They moved me and gave me so much hope for my daughter, Julia.”
MyBooklet BC, originally developed by Lydia for her daughter Julia, is one of the tools families can use to capture information about their loved ones’ interests, strengths and goals and provide to CLBC to help in planning services. The online tool was recently launched here. With a few exceptions, CLBC requires a personal summary when families are requesting services so staff understand what is important to and for the person. Individuals and families have many different options to choose from for developing their personal summary; MyBooklet BC is one of these options.
The concept of MyBooklet BC was born 14 years ago when Julia was in pre-school. From the beginning of her daughter’s entry into community, Lydia found she was telling her story over and over to professionals and other caregivers. It wasn’t that story-telling is difficult for Lydia, but the focus of these discussions were not on Julia as a person, and made Lydia re-live the difficult times they had experienced supporting her complex needs. One day after coming home from a particularly emotional meeting, Lydia and her husband Jun brainstormed a solution to use Lydia’s graphic design background to tell Julia’s story, and the first of her booklets was written.
“I have found that when I ask professionals to read Julia’s book before we started a conversation, they have fewer questions, and a better understanding of who Julia is and how to support her. It has been an amazing resource that really helps people understand the depth of her story.”
As Julia has gotten older, her story has changed and so have her books. The content has grown, and the book now reflects input from Julia, her family as well as her support team of therapists, schools, health care professionals and other caregivers. In fact, it was one of Julia’s doctors that suggested Lydia share the idea of her book with other parents because of how effective it was in helping her care team understand Julia’s needs and who she is. This sparked Lydia to connect with a contact from FSI and the partnership that developed MyBooklet BC was born.
“I met with Angela Clancy, Executive Director of FSI, in April 2017 to talk about my family’s story, and my hope and dream of sharing Julia’s booklets with other families for free. Angela approached CLBC for funding to make this tool accessible to everyone. CLBC agreed and we worked together. MyBooklet BC, a personal summary option, was completed in October 2018.”
MyBooklet BC is now a free online template tool that families and people with disabilities can use to create a personalized information booklet. People can enter personal details such as birth date and address, as well as interests, communication style, skills, abilities and needs, as well as photos and links to online content. With input from CLBC, MyBooklet BC can cover all the information CLBC needs. And because it is available online, it works well for many families.
“As part of my work on MyBooklet BC, I am now attending meetings around the province to tell my story. One of the things I hear most from families is how overwhelming it can be to think about writing their story. I always say start small, and build it over time with a person’s network. Julia’s book has contributions from many people and it is richer for it.”
Lydia is currently working on refining MyBooklet BC to make it more accessible for self-advocates to complete independently. She also wants to show people how video and other electronic media can be part of a person’s personal summary, and can help professionals understand needs and goals. Recently, Lydia created a video of Julia singing “O Canada” to demonstrate her talent, and Julia and her family are actively looking for opportunities for her to sing in community.
When asked if she has any final words to say about MyBooklet BC, Lydia says, “My daughter’s life needs to be celebrated. I want the community not only to involve her but expect her to be involved. MyBooklet BC is her legacy. Working on this project has not only connected me with other people, but helped me learn more about my daughter’s hopes, dreams and goals. I hope that sharing my story will encourage people to see the possibility of what people with diverse abilities can contribute.”
Find Out More
MyBooklet BC is a Family Support Institute of BC personal summary option developed by parents for parents. You can sign up to use this online resource by going to the MyBooklet BC website here.
The Family Support Institute of BC has also developed an online community resource database, www.findsupportbc.com that is searchable by community, age and topic. This resource can help individuals and families identify options to connect them to their community, and develop their personal summary.
MyBooklet BC is one of the personal summary options discussed in CLBC’s Welcome Workshops, and www.findsupportbc.com is also discussed during the workshops. You can find out more about Welcome Workshops here, or by calling your local CLBC office.
The Family Support Institute of BC (FSI) is unique in Canada as the only grassroots family-to-family organization with a broad volunteer base. FSI’s supports and services are free to any family. Trained volunteers throughout the province called Resource Parents and Resource Family Members are available to families for support, connection, and to share experiences, expertise, and guidance. You can find out more by visiting the FSI website here.