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There is so much wrong with this statement by Health & Human Services (HHS) Secretary RFK Jr.
1) Autism isn’t a chronic disease. It isn’t even a disease.
2) Autism doesn’t lead to someone potentially developing fatal encephalitis (brain swelling) or pneumonia.
3) Autism doesn’t require urgent medical hospitalization (which measles can) & stress the healthcare system.
3) Autism doesn’t spread from person-to-person in the air.
/1
@dalfen @hannu_ikonen first, I do agree Kennedy is totally off base. However, I’m going to disagree with the idea that autism doesn’t stress the healthcare system. My own son’s hospitalization cost $6K/day for the 3.5 weeks he was in the ICU after he ate enough plastic over an extended period to cause two bezoars. Rehab was another $350 a day. (Edit: rehab was 650/day.)
@dalfen @hannu_ikonen
Could it have been avoided with better staffing in the group home? Possibly, but it would’ve required a more intensive staffing pattern. Half of the staffing costs in the group home are covered by Medicaid. So either way, it stresses the healthcare system. Do I think he deserves the care? Yes, but I’m not going to say it doesn’t stress the healthcare system.
@dalfen @hannu_ikonen I’d like to see us put dollars into staff training, but Medicaid won’t reimburse for time not spent with the client. So instead we pay the ICU.
@ccampboyle It is very concerning if the group home staff is unaware / uneducated about potential challenges their autistic residents might face. With that knowledge, they could develop ways to keep their residents safe and engaged with the residential community. I’m sorry you have had such a horrible experience 
How is your son now?
@dalfen @hannu_ikonen thanks for asking. He is doing very well — fully recovered. The hospital suggested palliative care twice while he was in ICU and I was hell, no.
The big problem with the group homes is that the only requirements to be hired are a driver’s license, a GED, and a clean criminal record. The only training requirements are first aid, CPR, fire safety, and med administration. No disability specific training at all.
@dalfen @hannu_ikonen in theory, his house was highly staffed, as everyone was 1:1 during awake hours. But the second a staff person has to go to the bathroom, cook dinner, or prep meds, it’s not 1:1.
He needed to be eyes on at all times. The house knew it, and had requested a higher staffing pattern (as had I), but the state refused, until this happened.
@dalfen@mstdn.social@ccampboyle So is the house better staffed now?
@dalfen @hannu_ikonen yes. There’s an extra person on hand during awake hours. Plus staff have finally each gotten 40 hours of training. They also got a pay raise. But it takes something like this (plus a lot of pressure from me moving up the chain of command) for the state to act.
@ccampboyle Ugh, yes, but I’m so happy to read that the state finally took action!
This makes me think about the conditions in group homes around the country and whether staff receive disability training.