We talk About Autism.

It would be great if immediately after it is determined your kid needs something, that service would have an opening.

I wish there was no shortage of providers, no wait lists, providers who didn’t say no, no out of network providers, no need for re-assessments, no need to WAIT.

STATE PROGRAMS

I applied for the Children’s Long Term Support Waiver (CLTS) and Children’s Community options Programs (CCOP) in March of 2022. We received a letter on June 27, 2022 saying the wait list was another 12 months out. That is 1.5-2 years after I applied.

I cannot tell you how angry it makes me to know my child needs help and we need to wait a year and a half for one of the things that can help Jeanne and our family.

The Katie Beckett Medicaid program took a while but came up HUGE for our family, but that is for another post.

PROVIDERS

Every single provider seems to require their office assess Jeanne to determine if she has autism or autism that is SEVERE ENOUGH to warrant services.

We found the best doctor for Jeanne. Yes, I am biased, but now I’ve seen MANY providers in practice. Yes, I myself do not have medical degrees, but I know who is connecting and who is not connecting with any of my kids.

I wish Jeanne’s precious first years integral to her development were not spent on wait lists. I wish this time had been one in which had every single service when she needed it. Every service Granger and I needed when we needed it most.

I talk to God a lot about this. I thank Jeanne for being resilient while we work our way through red tape. I thank Jeanne for paving the way for Maeve in getting care.

The wait is always there. We are waiting for one provider to hire since October 2022 who is still not able to hire. Another provider said there is no room for Jeanne this summer. BUT I have faith in this third wait period for this new provider. Don’t worry, we are waiting for a call back from a 4th option, which reminds me, I should call them to check in.

Either way, we continue. We search, we get on wait lists, we try. We continue to try.