In order to develop a framework of residential services for Muslims with intellectual disabilities in Ontario reflective of familial values and traditions, a participatory action research process was implemented by the Canadian Association of Muslims with Disabilities. (CAM-D).
A task force was established to guide the process supported by CAM-D staff. A number of families living with intellectual disabilities from diverse backgrounds with adult family members with intellectual disabilities, an Imam, community workers and professionals were recruited to join the Task Force. Terms of reference document was developed and reviewed by task force members.
A questionnaire was drafted (see Appendix A) with input from the task force and an outside expert with a strong research and statistical background who was identified by a family member on the task force. The questions were intended to gather demographic information as well as gage the present situation and future expectations of families. It was administered through Survey Monkey and over the phone. All possible attempts were made to ensure that the questionnaire was accessible to everyone. It was in plain language. It was also administered upon request in Arabic and Somali.
An outreach strategy was developed to seek participants. A poster was circulated through a variety of electronic networks including the CAM-D family members list serve. Settlement services and developmental services providers were approached to assist in reaching Muslim families. Muslim professionals associations alongside ethnocultural associations of professionals were contacted to assist in the outreach. Posters were put up in Islamic centres and mosques. Announcements were requested at Friday congregations in mosques and Islamic centres. PSAs were requested from ethnic media.
A total of 71 responses were received. Some respondents lived in Ottawa, Windsor and London while the majority lived in the Greater Toronto Area.
The findings are presented in tables and explained in statements attached. It is clear from the findings that there is a looming crisis waiting to unfold over the course of the coming decade. There is a growing number of individuals with intellectual disabilities in their adult years. A number of caregivers are in their 40s, 50s and even 60s. The probability of their capacity to provide the level of care will shift significantly as they age within the next 10 years.
Muslim families have unique needs that they feel are not reflected in existing services. Halal food, gender-specific care and Islamic hygiene and cleanliness principles are very important to them in the care of their family member. A significant number of families are unfamiliar with mainstream residential services. Most do not have any plan or will in place for the care of their family member. They have many fears about the future and want help, but do not know how to get it.