There are a lot of challenges out there for someone like me living with cerebral palsy andgeneral anxiety disorders. The biggest one for me is the household income policy. It doesnot give you a livable wage. It allows you to make a little bit of money like $500 but then youhave to co-pay for your services like home supports. That’s difficult. I understand co-payments but you should be able to earn a living wage first before having to co-pay.
The other thing with the household income policy is that there needs to be an exemption forpeople with disabilities, so it is based only on my income and not also what my husband orparents make. That’s the hard part. Look, I got engaged in 2017 but because of thehousehold income policy, I can’t live with my fiancé. If I do, we are penalized.
Another problem is governments try to make policy as “a one size fits all” but it shouldbe on a case-by case basis, especially for people with disabilities. Our needs are verydifferent. For example, I think social workers have more of an understanding but it’s veryfrustrating because they could do more if they had more wiggle room. At the end of the daythough, they work for the government and the policy is the policy but that is the problem.They should be able to use their judgement a little more to get you the supports you need.
Accessing services is also often hard. Social workers and case workers are constantlychanging, the 1-800 number you’re supposed to call does not work well as they are slow ingetting back to you and you never really know who does what overall in government. So,the system seems quite broken and messy to me. I wish they could streamline it. It’sthe communication that’s missing. I mean, whether someone is in one department oranother department, the one hand should know what the other hand is doing. And, that’s notthe case at the moment.