The part about some individuals celebrating things like college courses and competitive employment for people with autism and not wanting to address the Level 3 folks who, truthfully speaking, will never really be able to do those things resonates with me. Like you said, it's not fun or glamorous to have to take on these more serious topics that don't have a cute ending wrapped in a bow. That being said, I fully support our son snd so many others like him to achieve and move forward as much as they are able, with quality supports and services. I feel that we can have dreams for our loved ones with Level 3 but not live in a dream world about how life for them really is. Thank you for this video and I look forward to more in the future.
Dear severe autism and Richard Edley. I live in PA and have been told families and IDD autism need to organize and strategize and become a Coalition. If families were an organization like RCPA. We would be the largest advocacy and lobbyist organization and have a huge presence with both Fed and state legislators
I have been attending some of the committees and I have finally been allowed to ask a question, but because of the restrictions in the meeting it had to be about the topic that is being discussed. The State is not providing opportunity to comment on FAMILIES and Caregivers... Families are really being trapped into poverty to care for their family members.
Thank you. Very informative. Richard you and I could do a comedy skit about the SIS. I have so much. My son was very young. First one in state. Temple u sent up people. I had sc, our friend who is psychologist and all the temple people and more here that day. My son was so upset he ran outside and banged his head in the ground. None of these people noticed. They kept going on in the question debate. I of course ran outside with him. And helped him calm. It’s the most ridiculous and cannot hold up in court. In past the person didn’t even have to be present. You get 10 people talking about him without him. If we had ten ppl ask same questions about us without us being there it would be very telling. So uch fir the everyday lives equality theory. Odp is basically insane. I can go on and on and on.
It’s incredibly challenging to look at the circumstances and remain optimistic. Most of my efforts are currently in (my own) longevity as i can’t see any other (realistic) paths for my daughter without me as her caregiver.
34:40 - Disability assistance workers are severely under-compensated, but mentioning warehouse clerks and fast food workers in the same breath as "easy, no overtime jobs with better compensation" as though they are equivalent is an absolute farce, especially when the former of those two typically requires the completion of certification courses to operate multiple classes of powered industrial vehicles.
Have you noticed that you two look like brother and sister? You are both so eloquent and logical. I am a mother of a severly autistic child. I am also very logical and well-spoked, at least in my native language. I wonder whether this has something to do with autism.
The part about some individuals celebrating things like college courses and competitive employment for people with autism and not wanting to address the Level 3 folks who, truthfully speaking, will never really be able to do those things resonates with me. Like you said, it's not fun or glamorous to have to take on these more serious topics that don't have a cute ending wrapped in a bow. That being said, I fully support our son snd so many others like him to achieve and move forward as much as they are able, with quality supports and services. I feel that we can have dreams for our loved ones with Level 3 but not live in a dream world about how life for them really is. Thank you for this video and I look forward to more in the future.
Yes, CMS or someone should do HCBS oversight.
Dear severe autism and Richard Edley. I live in PA and have been told families and IDD autism need to organize and strategize and become a Coalition. If families were an organization like RCPA. We would be the largest advocacy and lobbyist organization and have a huge presence with both Fed and state legislators
I have been attending some of the committees and I have finally been allowed to ask a question, but because of the restrictions in the meeting it had to be about the topic that is being discussed. The State is not providing opportunity to comment on FAMILIES and Caregivers... Families are really being trapped into poverty to care for their family members.
Thank you. Very informative. Richard you and I could do a comedy skit about the SIS. I have so much. My son was very young. First one in state. Temple u sent up people. I had sc, our friend who is psychologist and all the temple people and more here that day. My son was so upset he ran outside and banged his head in the ground. None of these people noticed. They kept going on in the question debate. I of course ran outside with him. And helped him calm. It’s the most ridiculous and cannot hold up in court. In past the person didn’t even have to be present. You get 10 people talking about him without him. If we had ten ppl ask same questions about us without us being there it would be very telling. So uch fir the everyday lives equality theory. Odp is basically insane. I can go on and on and on.
It’s incredibly challenging to look at the circumstances and remain optimistic. Most of my efforts are currently in (my own) longevity as i can’t see any other (realistic) paths for my daughter without me as her caregiver.
That college question 💔
34:40 - Disability assistance workers are severely under-compensated, but mentioning warehouse clerks and fast food workers in the same breath as "easy, no overtime jobs with better compensation" as though they are equivalent is an absolute farce, especially when the former of those two typically requires the completion of certification courses to operate multiple classes of powered industrial vehicles.
Have you noticed that you two look like brother and sister? You are both so eloquent and logical. I am a mother of a severly autistic child. I am also very logical and well-spoked, at least in my native language. I wonder whether this has something to do with autism.