Oh this is heartbreaking. How the minutes, hours, someone drops in gets to override the lived experience of your day to day. It’s not fair, just, or ethical.
Denise. I am in tears here. Because of this for you, and because this is so familiar to me. The way that a young person can be so fundamentally unseen and misconstrued by the very person we are relying on to mobilise support for them. I am also angry. This is not OK. And yet those of us who know this are so tired of fighting our own corners. 🙏
Thank you Davina! You said it perfectly, we are already exhausted from providing the care, and then we have to fight to prove that care is needed. It means a lot to feel understood.
Wow Denise, that has to be so tough to have it all come down to a stranger with a clipboard who is not there to provide the funding that's actually needed, and may not even know/understand enough about Maya's condition to make a true assessment.
It wouldn't surprise me if they get some kind of incentive or brownie points for saving the county $. Is there any kind of appeal process?
Ugh ugh ugh. This is strange math indeed, and cruel math. I hate this for you and your family. Of course these "assessors" have no idea of what in fact is going on.
Thank you. It really is an unfair system, and unfortunately, so many families have similar stories. I appreciate you taking the time to read and understand.
Oh this is heartbreaking. How the minutes, hours, someone drops in gets to override the lived experience of your day to day. It’s not fair, just, or ethical.
Hoping the appeal goes through quickly!
Thank you so much and for reading too!
Denise. I am in tears here. Because of this for you, and because this is so familiar to me. The way that a young person can be so fundamentally unseen and misconstrued by the very person we are relying on to mobilise support for them. I am also angry. This is not OK. And yet those of us who know this are so tired of fighting our own corners. 🙏
Thank you Davina! You said it perfectly, we are already exhausted from providing the care, and then we have to fight to prove that care is needed. It means a lot to feel understood.
The system, the points, it’s not a fair or accurate way to judge a human or their disabilities.
Exactly. Thank you for reading, I appreciate your support!
Wow Denise, that has to be so tough to have it all come down to a stranger with a clipboard who is not there to provide the funding that's actually needed, and may not even know/understand enough about Maya's condition to make a true assessment.
It wouldn't surprise me if they get some kind of incentive or brownie points for saving the county $. Is there any kind of appeal process?
Thanks Melanie for reading. There is an appeal process, and I plan to use it for sure!
That’s good to hear Denise. I wish you luck with it. Please add an update to the story to let us know how it goes when you know more.
Thank you, Melanie. I definitely will, I’m hoping the appeal brings a better outcome!
Good Heaven's Denise- When it rains it pours!!!! I am so sorry.
Yes, it does! Thanks for reading Jane, hope you’re having a good summer!
My heart breaks reading this. The unseens are the disability in many. It is the impact of the unseens that we fail to comprehend.
Exactly. People often don’t see how much support is needed behind the scenes. Thanks for reading Linda!
I’m so sorry that happened to you guys, Denise! That’s so unfair and just not right! You guys are warriors. 👏
Thank you Jess!
You’re very welcome, Denise!
Ugh ugh ugh. This is strange math indeed, and cruel math. I hate this for you and your family. Of course these "assessors" have no idea of what in fact is going on.
Thank you Miriam! A short assessment can never capture what daily life actually requires.
That is terrible and I am so sorry this happened to you and your daughter. What a crappy, unfair system.
Thank you. It really is an unfair system, and unfortunately, so many families have similar stories. I appreciate you taking the time to read and understand.
It sure is I had no idea! Ugh—bureaucracy & unfairness is the worst.
This feels so unfair 🙁 I think your honesty is important though, so many people must be affected by this!