By: Kimberlie Hart
In Newfoundland and Labrador, a new parent advocacy group called U2NL (Unseen and Unheard No Longer) is working to amplify the voices of families with children who have disabilities, including those living with sight loss.
The group includes parents and staff from affiliated organizations, including CNIB, the Cerebral Palsy Association, The Autism Society and Easter Seals.
U2NL is advocating for improvements in the legal guardianship process for children with disabilities, amongst other key issues such as respite care, caregiver supports, equipment needs, and inclusion.
The group has already completed a province-wide parent survey, which will be released in November, along with a formal report by The Citizen's Representative, entitled “By A Thread.”
Currently, Newfoundland and Labrador does not have a formal policy or standardized process for legal guardianship, creating significant challenges for families during the transition from pediatric to adult services. In response, parents are advocating for a transition process at the Janeway Children's Hospital, which includes legal guardianship planning.
As many young adults will continue to require support beyond childhood, their families often face substantial legal and financial burdens when seeking Letters of Guardianship of the Person. To address this, families are recommending the implementation of Integrated Transition Planning beginning at age 17. This approach would involve the child's healthcare team preparing comprehensive reports, including medical assessments and professional opinions regarding the child's capacity and need for guardianship.
Such documentation could streamline the legal process, reducing the need for costly lawyer fees and court appearances, easing both the financial and time burden on families. However, successful implementation will require education and training for all stakeholders, including medical staff, social workers, court personnel, and parents.
For more information on this initiative, contact Kimberlie Hart, Manager, Operations and Community Engagement at kimberlie.hart@cnib.ca.