KJIPUKTUK (Halifax) – I am the mother of a nine-year old boy living with autism in a province that has been defined as one of Canada’s “autism wastelands”, given its lack of services and funding.
Despite the Department of Community Services’ announcements that change for folks living with ASD and other disabilities is on the way, the stories of Callum Sutherland and Cuen Eng tell us otherwise. So do the stories I share with other parents on the internet, the school yards, at the yearly Ben James Camp, and in the waiting area of the IWK developmental pediatrics clinic.
I have also listened to the stories of parents who had to leave their jobs because schools send their children home on a regular basis allegedly unable to deal with their children. As a result, they give up stable paychecks, benefits and a professional career to become full-time caregivers in a province which refuses to offer anything more than piecemeal supports and in which people living with disabilities are likely to live in poverty.
The open letters addressed to you by disability activist Kendall Worth and law student Katie Brady remind me and others of the rubber walls that characterise institutions like Community Services, which through their everyday policies and practices strengthen ableism, poverty, and racism in this province while maintaining a façade of liberal benevolence.
Aside from being a mother of children with disabilities, a special education teacher, and an advocate for my sons, I am also a feminist.
It is from this multifaceted position that I am writing to you not only as the Community Services Minister but also as the Minister responsible for the Advisory Council on the Status of Women Act. Because of this I consider you a feminist or, at least, an advocate for women’s rights in the province.
I am also assuming that in this capacity you are committed to using a gender-sensitive perspective such as Gender-Based Analysis Plus (GBA+) promoted by Status of Women Canada when you consider the possible effects of the restrictive criteria that limit access to the Direct Family Support for Children (DFSC) for the purchase of respite services.
In fact, one such limitation is the centrality of IQ scores in determining if family will get funding for respite. Children who find functioning in a socially acceptable manner challenging, as many children with autism do, may not be affected by an intellectual developmental disability but still struggle displaying severe difficulties in adaptive functioning without challenges in intellectual functioning.
Respite funding in these cases would give caregivers, most of whom are women, a well-deserved break while allowing the child to engage with peers outside of their family circle.
In the same manner, the fact that respite funding is given on the basis of net and not disposable income overlooks the fact that women may be caring for more than one child with disabilities and that many families are resorting to costly private mental health services.
Outdated and inflexible criteria have an impact on children with disabilities and on the women who care for them who lose the opportunity of providing for their families, and having fulfilling careers.
Minister Reagan, it is high time to begin a serious discussion with women who are caregivers for children and adults with disabilities in this province to make sure that equity becomes a priority in Nova Scotia.