My brother has been a paraplegic and completely incontinent his entire life (nearly 4 decades) and my family had no idea about the waiver program until a family friend told us about it a few years ago. It was then that our mom contacted our local government office and tried to get assistance for him but was instantly told he did not quality without them even asking any personal questions about his disability.

A year later we tried again after my brother became seriously ill and that time they said he definitely qualified. Maybe the first government employee was just having an off day but either way it delayed getting help for my brother and although situations like this can happen anywhere, when the quality of life for someone is not being taken seriously by the offices that claim to have their best interest at heart, then something has gone amiss. 

While I am extremely grateful to the government for providing the waiver program to help families like us, it seems the dissolution of personal home facilitators will cause further issues especially if mistakes like the one above are made. 

After my brother was approved for the waiver, we contacted a facilitator referred to us and they have always been very personable and helpful, even answering questions for us well beyond the typical business hours because they know caring for a disabled person doesn’t just stop at 5pm. I know without a doubt if government issued employers take over the facilitation, it’s going to be that much harder for everyone especially now with us live-in caregivers having to suddenly adhere to a silly app that doesn’t understand that caregiving continues on well after the “clock out” time.

As previously mentioned, we’ve only been in this program for a year and everything was going smoothly until recently when all these new changes were implemented which no longer even benefit the disabled and it doesn’t make any sense. The reason we chose consumer direct to begin with was solely on the fact that we were told we’d have more control over my brother’s healthcare but with all these government changes being proposed, our autonomy is being stripped away piece by piece and it’s unacceptable. Until the ones in power have a disabled child or family member, they will never understand or care. The purpose of change is to progress but it seems the government has their priorities backwards. Sigh. 

Anyway, thank you for reading if you made it this far. Sigh