Today marked an important day for the Montreal and its surrounding area Rare Disease Community. As a new political party takes office, the Coalition Avenire Quebec (la CAQ), several groups of like-minded individuals joined forces to have their voices heard. Major cut backs to orphan drug support policies and social services have been felt by every parent, child, and community member facing the challenges of a Rare Disease or undiagnosed disease. In attendance was la Corporation L’espoire, a not-for-profit group that support children and families with support services for children with intellectual variances and Autism Spectrum Disorder. Also, the Regional Committee of Associations for Disability Intellectual Property Office (CRADI) who defend the rights and promote the interests of persons with intellectual variances and / or autism spectrum disorder and their families. The Rare Disease Foundation or la Fondation des Maladies Rare made it’s very first appearance today to add our voices.
Why have we assembled today?
- Major proposed cuts to home aid support.
- Several years long wait list for re-adaptation service support.
- 7-12 year long wait list for specialized and inclusive housing.
- 5 year long wait list for respite care, daytime care and one off care.
- A general loss of funding supporting a social service support programming