Thanks for publishing this. I too voluntarily advocate for and with friends whose children are neurodivergent, supporting them through the funding process. All too often, they’ve engaged authentically with these services and been fobbed off with a funding amount that is not sufficient in funding necessary supports for each individual child. I help them understand the unwritten rules of what the agents are looking for and how to elicit the language required to express the child’s current level of need. It’s quite an academic process which I love, although I’m endlessly angry that this intense level of work is required to prove a child’s support needs. I find it cathartic though, and I think it helps in Little Sam’s recovery, as I was an undiagnosed autistic mute child.
This reminds me that the consumer organisation wrote a booklet called letters that Work. So people could get resolutions in the consumer space maybe the disability sector could write a similar handbook with a glossary of terms that need to be used to get appropriate action in funding
A number of organisations do provide this type of information sharing, via Facebook groups, zooms, email, in-person events, etc. But if you're not connected in with a group or are new to the sector, knowing where to go to find information can be tricky. It's not unusual for parents to suddenly be thrust into the sector and it is a LOT to deal with, all at once. It can be a real avalanche of information - or a complete dearth of it!
Thanks for publishing this. I too voluntarily advocate for and with friends whose children are neurodivergent, supporting them through the funding process. All too often, they’ve engaged authentically with these services and been fobbed off with a funding amount that is not sufficient in funding necessary supports for each individual child. I help them understand the unwritten rules of what the agents are looking for and how to elicit the language required to express the child’s current level of need. It’s quite an academic process which I love, although I’m endlessly angry that this intense level of work is required to prove a child’s support needs. I find it cathartic though, and I think it helps in Little Sam’s recovery, as I was an undiagnosed autistic mute child.
This reminds me that the consumer organisation wrote a booklet called letters that Work. So people could get resolutions in the consumer space maybe the disability sector could write a similar handbook with a glossary of terms that need to be used to get appropriate action in funding
A number of organisations do provide this type of information sharing, via Facebook groups, zooms, email, in-person events, etc. But if you're not connected in with a group or are new to the sector, knowing where to go to find information can be tricky. It's not unusual for parents to suddenly be thrust into the sector and it is a LOT to deal with, all at once. It can be a real avalanche of information - or a complete dearth of it!