“The Fight”. The largest proportion of data were generated within this theme, related to a lack of transparency of services, coordination of care across service sectors, and continuity of care over time. Parents generally felt that access to services diminished as their child with ASD got older, but their impassioned comments did not reflect a care system that was easily navigated at any stage: “pulling teeth”, “flying blind”, “into the abyss”, “you need a PhD to figure it out”, “tough waters to navigate”, “full time job” and “like getting blood from a stone”.
My experience with the school itself has been really good. Dealing with the school district, extraordinarily difficult. I didn’t
know that I had choices; the district doesn’t tell you that. They told me I didn’t have a choice. It’s tricky, ‘cause you’re getting into employee/employer issues, and I don’t want to put the people who are helping me in a position that’s awkward for them. Do I think they would try to? Absolutely. Do I think they have that decisionmaking power? No.
“The Fight”. The largest proportion of data were generated within this theme, related to a lack of transparency of services, coordination of care across service sectors, and continuity of care over time. Parents generally felt that access to services diminished as their child with ASD got older, but their impassioned comments did not reflect a care system that was easily navigated at any stage: “pulling teeth”, “flying blind”, “into the abyss”, “you need a PhD to figure it out”, “tough waters to navigate”, “full time job” and “like getting blood from a stone”.My experience with the school itself has been really good. Dealing with the school district, extraordinarily difficult. I didn’tknow that I had choices; the district doesn’t tell you that. They told me I didn’t have a choice. It’s tricky, ‘cause you’re getting into employee/employer issues, and I don’t want to put the people who are helping me in a position that’s awkward for them. Do I think they would try to? Absolutely. Do I think they have that decisionmaking power? No.
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