Community Development

Funding level: Up to $50,000


Families with children with disabilities have many challenges, struggles & frustrations in life. The management of important information pertaining to their child is not standardized & the communication of this information is a process that largely depends on the sharing of medical reports, clinical assessments & dry government forms. Ultimately, this experience is cold & impersonal and the person at the center of it all is often reduced to a number or category designation.

The project proposed herein is an opportunity for families, in collaboration with key partners, to capture key information in one place and - most importantly - capture it in a manner that is very person centered & inviting to read.

The "Personal Information Booklet" is a visually appealing & personalized booklet (hard copy & online) that contains all the pertinent information the individual with a disability & their family wants & needs to share with the various people that come into their lives - schools, employees, government, medical staff, family, friends & people in community. This booklet will also include photos, passions, interests, hobbies & much more - revealing the character, personality, & individuality of the person behind the paperwork not just highlights from assessments & reports.

Ultimately, we aim to create visually pleasing & well-structured online templates for families. These templates will allow individuals & families to easily input the details of their "story" to create their own personalized booklets. The goal is to paint a picture that not only includes the necessary health & safety information but also the details that contributes to their loved one having a rich life with active participation in the community, a strong sense of contribution & belonging, & a social life free from isolation.

This project is one of the latest innovative tools the Family Support Institute (FSI), a provincial non-profit charitable society, initiated & will develop to inform, encourage & guide families in a manner to build their capacity & allow them to advocate for themselves. The project has already been presented in many meetings & conferences with extremely positive response including at this year’s Inclusion BC Conference & FSI’s annual Training Weekend.

FSI will collaborate with various existing initiatives & organizations to promote & provide a direct & positive impact to families they support. FSI will also develop an online collaboration forum to build skills, receive feedback, & to track & evaluate progress.

The FSI will pilot the project by working with 20-30 families whose sons & daughters are going through transitioning from high school & entering adulthood to promote stronger self-determination, personalized approaches, empowerment & collaboration.

The anticipated outcomes of project is to help to alleviate much of the stress around consistency in relaying pertinent information & to ensure a person centered approach in doing so. It is a mechanism that will allow for family, friends & professionals to be well supported & informed with current prioritized information & allows for greater understanding & acceptance of the individual.

This booklet will empower our community’s most vulnerable & marginalized individuals with disabilities & their families by giving them a strong voice & confidence to share about themselves, celebrate their children & invest in their knowledge & advocacy skills.

It will also stimulate dialogue & engage the reader in a deeper & more meaningful way, allowing them to see past an individual’s disability & diagnosis & appreciate them for who they are on another level. A level that highlights that all individuals have interests, passions, skills & assets as well as challenges & struggles.

Ultimately, the increased option for communication & engagement will promote inclusiveness and a strong sense of belonging to communities - a true example of inclusion at its best.

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Family Support Institute of B.C.

Location: New Westminster