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teatime : You nailed it. I went through the closing of institutions in '81. I was trying to find a job in the field and it was flooded with professionals looking for jobs after being let go when they closed the doors. And on the flip side we have my DS. He is lucky to a point- he is stable but there is no cure. We have been able to provide him with the care he needs- though we almost went bankrupt a couple of times when he was young. Hospital and inpatient places along with doctors and medications don't come cheap even with insurance. And having a savings for medical expense isn't easy when issues started at Day 1. There are long term , private care places- insurance doesn't cover those. They run 5-10k a month- that was 5 times our mortgage way more than hubs salary. So yes the wealthy have that option but the middle and lower class don't. Some families abandon their sick family member and I can't judge them as I have lived that hellish life of physical,verbal and emotional abuse with my DS. Then there are those people who just leave their families- not wanting to take their meds or live with their families rules( DS did that for a week).

TEXASGIRLMAMMA : I'm so sorry for your friend- not a path I'd wish for my worst enemy. When he lived with us as a child and teen- I could control compliance about medication BUT he'd go off toMcD's for work and drink a gallon ( seemed like) of caffeine and then that would trigger a manic episode. When he got out on his own - it was a worse nightmare- I had no control so then he was off his meds and drinking caffeine and alcohol. The Center and we as parents came up with support to make sure he took his meds and stayed away from alcohol. The last hospitalization scared the crap out of him AND-we finally found the right " cocktail" of drugs and he's been fine ever since-3 years. BUT those medications have their own issues- he has pretty significant memory loss and he's developed a tremor from another drug. It kills me to watch him grow old BUT stability is key for his and our safety. It sucks but it is what it is

teatime : Sure hope they are okay with you sharing so much detail about their child.

Donnawisdom Labslady : Your voices are so valuable to us. So many times families that are dealing with mental and cognitive disabilities stay behind their doors partially from the exhaustion and toll that dealing with it takes and partially because of the energy it takes to educate the public on what life is like for you. So they stay underwraps. Most people have no idea and you do a big service when you shine a light on it. I have a friend whose young adult son has autism. He is pretty verbal and can be social but he also can be extremely aggressive and destructive. Things were easier when he was younger and in a school with trained staff but now that he has aged out they have no to little support for him. They have tried day centers which work for a little while until he has a huge meltdown and throws furniture and is asked to leave. He has destroyed their home more than once. He is so OCD that if he sees so much as a loose thread on a cushion he will shred the whole thing. He has physically attacked his parents to the point that they have had to call the police. His mother had to give up a very rewarding photography business to be with him 24/7. Her husband is very supportive but he has to make a living so at least he gets out of the house. Their home is very minimalistic because he is so easily triggered. Right now he is as stable as he has been in quite some time and he's still a hand full. His current medication regimen seems to be lengthening the amount of time between his big dangerous meltdowns and they are grateful for that. However, they never quite exhale because they have gotten their hopes up before that they have found the right cocktail of meds only to have it stop working and they start back at zero. They worry about what will become of him when they are no longer around. They are comfortable but not wealthy. Their other children will not inherit anything because all they have is in a trust for the care of this child and they live with the expectation and burden that the siblings will be his caretakers. They worry that the siblings won't be willing or able to make the sacrifice (understandably). They worry that he will find himself homeless and self medicate with drugs and alcohol as so many mentally ill and functionally disabled people do. They worry that he will commit a crime in one of his rages and they will be unable to protect him. I apologize for being long winded, but this is a reality for more families that we realize. And I have only skimmed the details of their day to day life. Services and support for adults with mental, developmental and even physical disabilities are woefully underfunded and neglected.