Advocacy – These People Make Me Tired

May 10 2025


(Camilla & Lillian 2015)

There’s almost nothing as tiring as fighting for services, or against a reduction of services, as a caregiver and advocate for a person with disabilities.

For the past 3 weeks, at the same time as final exams, final projects, work stuff, and having personal health issues, I’ve had to advocate against one of Lillian’s services being reduced. They can miss me with that bullshit as Lillian clearly fits into Tier 2 and not Tier 1.

Message I received late yesterday afternoon: “After thorough consideration, we would like to inform you that Lillian’s tier level will remain unchanged at a Tier 2.”

We went from this initial message, “We have a fiduciary duty to ensure the appropriate and efficient use of funds and cannot continue to authorize tiers not substantiated by the supporting data,” to “Yes. You are correct.”

In my opinion, when an agency has screwed themselves having to do with their budget, they SHOULD NOT look at cutting or reducing funds for those they serve. They should go straight to the top of the agency and begin cutting salaries. Let’s see how often they make that mistake. Most likely, only one time.

I may look and sound like stereotypes associated with someone with my appearance, but I pack a powerful punch. Don’t be fooled by stereotypes folks. <> (2015 & 2024 photos)


(Camilla & Lillian 2024)

Handing the Advocacy Wheel to My Teen – Intense Times

January 19 2024

When your neurodivergent 18-year-old has to take over advocating for themself, making phone calls, sending emails, trying like hell to get others to just do their damn job; that’s some intense shit right there.

They are experiencing just how much time you’ve spent and how hard you have to advocate. It’s also damn hard not to jump in and rip these people to shreds due to the intense anxiety they are causing your child. Of course I will not do this so they can learn how to take care of these things.

My level of “I will not be ignored” is pretty damn high. I’m professional about it, but I will hound you to the ends of time until you do your damn job! 💥💥💥

**I had to step in as this had to be addressed ASAP. I happen to be connected with one of the head folks at this agency. I emailed for help. I had supervisors emailing and received a call right away. It is finally taken care of. Whew! In between my other work and meetings. The ride of life, indeed!