“The change has been so big that I can divide my life into pre-Direct Funding and post-Direct Funding. That was when I deeply felt the Independent Living philosophy in my life.”
CILT and Independent Living
Before CILT I used to receive services from CCAC (Ontario Health at Home now). PSW’s would come with a list of the tasks that they would do for me. Unfortunately, there was a long list of things that they were not allowed to do, such as using the stove. Most of my care was done by my mother. Starting on the Attendant Outreach program was a great change. PSW’s were open to receiving my directions. It is the “directing one’s own care” model. PSW’s were allowed to do more things for me. However, the greatest change happened when I switched to the Direct Funding program. The change has been so big that I can divide my life into pre-Direct Funding and post-Direct Funding. That was when I deeply felt the Independent Living philosophy in my life.
As a person with a neuromuscular disability, I know that I can never be physically independent. However, it’s a huge difference between relying on family members and relying on attendants. No one wants to feel like a burden on their families, especially when parents get older and weaker. Relying on attendants to provide my personal care allowed me to be the daughter, sister and aunt, rather than the care recipient. On the contrary, I am currently a caregiver to my parents. Independent Living to me means living the day-to-day life without relying on the family’s support. It significantly reduces stress and concerns around future. Every person who grows up with a disability questions “what will happen to me when my parents cannot provide me with care anymore?” CILT Independent Living philosophy made this question less scary.
Independent Living to me also means that I have the autonomy and freedom to choose those who will provide me with my care and to decide how I want the tasks to be completed. With the support from attendants through Direct Funding, I put the job description and I have my ADL and IADL completed the way I want. At the end of the day, I’d like to wear ironed clothes, live in a clean apartment, cook the food I crave, go shopping to choose what I want, go to a medical appointment without having to deal with the confused looks on the staff members’ faces because they don’t know how to transfer or position me, travel for a conference or just for fun etc. Direct Funding has literally enabled me to live independently and with dignity.
The ability to choose my attendants makes a huge difference. It is very humiliating to have to accept whoever is sent to you just because there is no enough staff or because your reasons for not wanting a certain PSW are not convincing enough to the management. The relationship between attendants and persons with disabilities is very unique and delicate. Nobody comes as close to the details of our daily life as our attendants. They are almost the only ones who see us when we are in our worst and best moods, when we are clean and dirty, when we are dressed and undressed, when we are sick and well etc. It’s extremely uncomfortable to have to receive this kind of care from somebody you don’t feel comfortable to.
No words of appreciation can thank enough those who started the Independent Living movement. Their strong advocacy has led to me living the quality of life I’m currently living and enjoying a normal relationship with my family that doesn’t revolve around me depending on them for my everyday activities. Thanks to those leaders and to everyone at CILT as they continue the journey. I really hope this philosophy and the Direct Funding model expand to become the norm all over Canada.
Nouma Hammash is a self-manager in CILT Direct Funding program. She has a neuromuscular disability since her early childhood. Nouma is a social worker in Toronto. She works as a Service Navigation Coordinator serving persons with disabilities. She also provides counseling out of her private practice. She volunteers and advocates in projects that address issues related to disability.
