COFACE Families Europe made a submission to the UN Committee on the Rights of Persons with Disabilities on Articles 4(3) and 33(3) of the UN CRPD relating to consultation and involvement of persons with disabilities, including children with disabilities in decision-making processes through their representative organisations. During its 19th session (14 February- 9 March 2018), the UN Committee launched the process for adopting its General Comment No. 7 on articles 4(3) and 33(3) of the Convention, relating to the participation of persons with disabilities, including children with disabilities in decision-making processes, through their representative organizations. The UN Committee shared its draft General Comment with the wider public earlier this year and welcomed comments from stakeholders from all over the world. The draft General comment is available in English here.
COFACE Families Europe and its COFACE Disability branch appreciated the opportunity to share our views and remarks on the draft General Comment. In our submission, we have raised the following important points:
- We have noted with concern the overly negative language used in the draft GC referring to the involvement of family members in consultations that affect the lives of their children and relatives with disabilities. Families of children with intellectual disabilities, children on the Autism spectrum, or children with complex needs, play an extremely important role in bringing the -otherwise neglected- voice of their children to discussions at law and policy-making levels. Therefore, family members should be empowered and supported to become facilitators of the social inclusion and development of their relatives with disabilities. Ideally, families have good relation and active collaboration with the organisations of persons with disabilities to work together towards the promotion and protection of the rights of persons with disabilities. We also suggested that the right of children to be included in decision-making processes should be better mainstreamed throughout the final General Comment;
- The term “representative organisations” of persons with disabilities should include the organisations composed and governed by persons with disabilities and family members, as family members are key to promoting and supporting autonomy and active participation of their relative(s), and advocating for their own support needs and thus they should be included in the consultation, decision-making and monitoring processes;
- Families also play an important role in preventing the institutionalisation of persons with disabilities. Family carers who had to quit their jobs often face poverty and various burdens, due to the lack of community-based support services for persons with disabilities. The General Comment should reflect on the need to provide support for persons with disabilities and their families, so they can live in dignity where and with whom they want. That support should include human rights awareness training for persons with disabilities and their family members to empower them to participate in policy and decision-making processes in a meaningful way.
- The General Comment should provide a realistic, informative and useful guidance to States Parties on what requirements they should respect in order to involve the representative organisations of persons with disabilities and their families in a meaningful way in law, policy and decision-making processes, as well as in the monitoring of the implementation of the Convention. Without listing the concrete measures and prerequisites, States Parties will not be able to meet with the complex requirements of Articles 4(3) and 33(3).
Furthermore, we made a number of substantive comments and recommendations linked to concrete paragraphs of the text. We hope that the UN CRPD Committee will find our comments and feedback useful and will integrate them in the final text of the General Comment.
For more information, please contact Magdi Birtha, COFACE’s Senior Policy and Advocacy officer at firstname.lastname@example.org