Gail, I can only speak about my own personal experience. Essentially, my situation was very frustrating not with my son's illness, needs, etc, but more from the system that never provided for his needs. My son inherited a genetic disease from his father that we found out about the potential of it being inherited when i was 4 months pregnant. At 31 i was a single parent needing to work full time to provide for the needs of my child with a progressive disease that was fatal in the long run. Because my son's disease was rare he did not fit into that fine cut out slot that the state uses to determine criteria for eligibility for medicaid, ssdi, and more. I worked to keep him home where i could manage his care and well being because i knew there were no placements carved out for him or his needs. So, school did not have adequate instruction for him or the curriculum he needed, a para professional could not manage his needs for he was medical and guess what if the school can't find a nurse he doesn't get one so i paid to have that for a period of time and then there is more. Trust me i have all the documentation from here to jericho. The state well that is the biggest joke of all time. We employ all these fancy titles to postions but they don't do squat. In fact, i was also my son's case manager so i knew who was doing what and more. I updated all parties and my son had 26 different medical providers. You really have to investigate and do homework when you visit placements no matter what age to ensure that your loved one is going to be able to get the provisions as stated. Be aware that many places have tours arranged and groups running with upteen employees that are not there when the tour is not scheduled. There is so much to be spoken about in regards to these matters, but i can't do it for long periods of time due to my threshhold being weakened and frustrated when i visit these events. Every caregiver has a different experience depending on age, disease, illness, family support, etc.
