The Exclusion of Families of Children with Disabilities: A Case Example Diane Richler Chair, International Disability Alliance Good Practices in Family Policy ‐ Making: Family Policy Development, Monitoring and Implementation and Lessons Learned
Convention on the Rights of Persons with Disabilities (CRPD) “persons with disabilities and their family members should receive the necessary protection and assistance to enable families to contribute towards the full and equal enjoyment of the rights of persons with disabilities” Good Practices in Family Policy ‐ Making: Family Policy Development, Monitoring and Implementation and Lessons Learned
The Situation Today • 1 billion people have a disability • Children with disabilities are invisible • Their families are invisible: – In policy – In programs – In literature Good Practices in Family Policy ‐ Making: Family Policy Development, Monitoring and Implementation and Lessons Learned
Challenges for Families of Children with Disabilities • Negative attitudes and prejudice • Families considered dysfunctional • Extra costs of disability ignored • Lack of supports and services • Additional ongoing needs of children with intellectual disabilities • Family break ‐ up Good Practices in Family Policy ‐ Making: Family Policy Development, Monitoring and Implementation and Lessons Learned
Challenges for Children with Disabilities with their Families • Abuse • Overprotection Good Practices in Family Policy ‐ Making: Family Policy Development, Monitoring and Implementation and Lessons Learned
Family ‐ Centred Policies for Children with Disabilities • The family and not the professional is the constant in the child’s life; • The family is in the best position to determine the needs of the child; • The child is best helped by also helping the family; • Families should be supported to exercise choice and control about the supports and services for themselves and their child. (Dempsey and Keen 2008) Good Practices in Family Policy ‐ Making: Family Policy Development, Monitoring and Implementation and Lessons Learned
Family ‐ Centred Policies That Overcome Exclusion • Cash transfers • Short breaks for parents • Supports for working parents • Capacity building of parents and their organizations • Tax relief Good Practices in Family Policy ‐ Making: Family Policy Development, Monitoring and Implementation and Lessons Learned
Role of Organizations of Families of Children with Disabilities Empowerment Model Good Practices in Family Policy ‐ Making: Family Policy Development, Monitoring and Implementation and Lessons Learned
Role of Organizations of Families of Children with Disabilities Empowerment Model Or Service Model Good Practices in Family Policy ‐ Making: Family Policy Development, Monitoring and Implementation and Lessons Learned
Role of Organizations of Families of Children with Disabilities Empowerment Model Or Service Model Or Partnership Model Good Practices in Family Policy ‐ Making: Family Policy Development, Monitoring and Implementation and Lessons Learned
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