Role of families in advocacy

To read on iBelong! website:

Families and advocacy

Advocacy Work

1. Advocacy at school:

All Canadian provinces and territories have legislative commitments to inclusion. Parents have a right to know what the school is doing to create an inclusive environment for their child. They have a right to advocate for their child.

Effective advocates try not be adversarial but seek to help and to ensure that teachers and others grasp the perspective of families and integrate information they receive from families into their practices so as to create the best school experience for the young person.

Parents who engage in advocacy work can help their own child and many others. In the process, parents often meet and form loose associations with other families.

2. Advocacy for Future Security:

Sometimes families see an obvious need or a deficiency that could be rectified by appropriate legislation and they work to bring about this change. An example is the work of Vickie Cammack and Al Etmanski and PLAN (Planned Lifetime Advocacy Network), an organization that they founded. They lobbied the federal government successfully for the establishment of the Registered Disability Savings Plan (RDSP).

With an RDSP the federal government contributes a certain amount according to the circumstances of the family, and the family and friends can also contribute to the Savings Plan. (It is similar to the RESP, a plan to save for the costs of higher education.) The purpose of the RDSP is to help ensure a good life for their family member when they are no longer alive. In their work, Vickie and Al were inspired by the needs of their daughter and of many other families in their network.

Persistence and Belief in your Family Member

“Never give up. Our daughter has far surpassed anything that the ‘medical experts’ anticipated. If we had simply accepted their ‘expert opinions’ that there would be little to celebrate in her future, that might well have been the case. We chose to fight for better aid, more assistance, etc. We never let the school off with what they felt was enough for someone who was ‘going no place’. Of course, our daughter had some fantastic supports in the community she moved to. She lived with a family in an approved home. There she was treated like one of the family and was expected to help with whatever she could. She blossomed and now has goals for herself. She radiates toward anything that makes her strive to do better. We are very proud parents!!!”

Helen, SK

 

Other Families Taking the Lead

Often parents are just barely coping with the daily demands—working, getting meals, caring for the household and the needs of other children and family members—and it is very difficult to give time to anything beyond this for their young person who needs more support. When other families have the time and resources to take the lead and initiate something, this can be a real help.

Parent, NS

Faith and Disability Advocacy

Many examples exist of family members seeing a need and bringing people together to take action. Rabia Khedr is a dedicated grass-roots community leader and disability rights advocate. She is a founder of the Canadian Association of Muslims with Disabilities. CAM-D holds a vision of a global village that includes full access. Rabia’s family experience—two of her brothers have intellectual disabilities–and her own experience of blindness drive her work to address areas where racial, gender, faith, cultural and disability experiences intersect.

Power of Attorney and Guardianship

Rebecca’s story is influencing policies around Power of Attorney and Guardianship. Together with CACL and other organizations Rebecca and her family are encouraging a policy of “supported decision making” that includes the person with a disability.

Provincial/Territorial Inclusion Legislation and Policy (93.71KB, PDF)

This document contains some links to provincial and territorial government statements on inclusive education.

PLAN and RDSP (142.46KB, PDF)This document will provide you with the url for the PLAN and RDSP website.

3. Advocacy in the Wider Community and Internationally:

Susan Beayni is convinced of the value of advocacy in the community and with governments. Accompanied by her daughter Rebecca, Susan has spoken at numerous policy-setting groups and conferences, to many school children and also at the United Nations. The group of families to which the Beaynis belong had a 10-minute professional video made about Rebecca. When Rebecca shows this it helps audiences better grasp the potential power of the life of someone who is very limited in many ways.

During the United Nations discussion on the proposed Declaration on the Rights of People with Disabilities Rebecca’s contribution, with others, led to greater sensitivity to the range of disabilities and to possibilities that the Convention needed to consider. As a result, certain approaches such as “supported decision making” were included in the final Declaration.

Rebecca and her Mom – Travel and Advocacy Work

Rebecca has traveled to a dance course in Boston and to various meetings and conferences including the United Nations, where she has influenced others’ perceptions of the needs, rights and contributions of people who have disabilities such as she has.

Power of Rebecca’s Life and Advocacy

Rebecca’a parents realize that Rebecca and her story have power to influence others in the community and in the various levels of government.

National Organizations Engaged in Advocacy Work (108.32KB, PDF) Some of the organizations described in this document concern themselves specifically with needs and opportunities for people with intellectual disabilities. Some focus more on advocacy related to needs and opportunities of people with physical disabilities or with multiple disabilities.

“Dance in the Shadow” (131.64KB, PDF)This film continues the story of the life of Rebecca Beayni and the many people whose lives she has changed through the gift of friendship.

About Rebecca and her Video (251.78KB, PDF)Rebecca has a website which gives information about her and her activities and also explains how to obtain a copy of her video, “Revel in the Light.”

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