TCD, I greatly appreciate your response! Thanks for everything you have posted on this board. I have read much in the past. I'm just revisiting this issue now, trying to refresh my memory and see if what didn't work before might work now.
My biggest question is, how much "control" does the state or caseworker take over a loved one? How much do they decide of everything and you and your loved one have no choice? For examples,
(1) if my daughter could get her own place (subsidized?), she could not be dumped in some crowded public project building, or adult-day care place or nursing home, because she has an immune system issue and catches illness easily. She can't be around others much (too stimulating for her nervous system). Besides her big sensitivities to noise, smells, light, stress, chemicals, etc. and she needs uncarpeted & allergy-free place, meals made for her based on the few foods she doesn't get sick on (very bad digestion) etc.
(2) How much "time" do they provide for such caregivers to come to the home?
My experience is this:
Shortly after my daughter's breakthrough diagnosis (2007), an integrative doctor ordered PCA care and Medica had to pay for it-- but they decided since she was doing mostly natural healthcare, they'd only pay 2 hours a day, which stopped in 3 months due to other redtape!! They were not basing it on what her needs were and the fact that her body is drug-resistant! Wasn't that discriminating against a special needs person? And if I was working full-time, I could not have them drop her help ever. Plus, I'm afraid that her "politically incorrect" diseases (Chronic Lyme disease, coinfections, etc) and needs will be poorly understood and inadequately met in their hands. I have come too far with her to drop the ball now, when she has her best chance in 10 years now to overcome this disease with the best doc in the country-- I cannot take her out of state to him every 4 months if I am full-time employed.
I just feel that I'm between a rock and hard place.