Family and Caregiver Schizophrenia Discussion Forum


Go to the video archives. Leaders in the field IMO. They “get” our problems.

Amador of LEAP, Laitman of the Clozapine book, etc. Even Dr. Drew surprised me with his understanding.

Nice to hear people other than family members actually talking about our issues, with real knowledge, understanding, experience, and willingness to advocate.


I plan on listening to each of these - really hoping the exclusion session will have some good news for a change. Thanks for posting this!

I watched the IMD Exclusion one today. A NAMI co-founder’s comment during the question and answer portion was baffling, with no explanation.

I just finished listening to it, I think the former US Representative made a decent guess at the unnamed “NAMI co-founder”'s possible thought. Some people think removing the exclusion will set us back to the dark ages of asylum care. His point was well made - is it better now when our family members are in prison or on the streets?

IMD - institution for mental disease - EXCLUSION

NAMI is tricky, they do us a great service with Family to Family but you really have to watch their political motives. Too often NAMI has excluded our family members with severe mental diseases from their list of priorities.

The IMD Exclusion is outright discrimination against people with mental diseases. It is the only part of the Medicaid program that doesn’t pay for medically necessary care simply because of the type of illness being treated.

Everyone always wonders why there aren’t enough hospital beds when our family members need one - its because the hospitals can’t get paid if they have too many beds occupied with our family members. If hospitals could get paid for taking care of our family members without a limit, it would be an entirely new ball game bedwise.

That was the first time I have heard anyone explain the stovepipe “rule”. It never made sense to me that why we couldn’t get legislation passed that would actually save money in the future, well, now I know.

I look forward to watching the others.


I agree totally. These have been really great webinars sponsored by Healing Minds NOLA and they are archived on the website in case you aren’t able to listen when they are presented live.


Thank you for posting this website…I need this kind of information …


@Day-by-Day There are definitely differences among advocacy groups about priorities and approach to dealing with the many issues that are involved when it comes to SMI. It is good for us to continue to learn and come up with our own thoughts about what is most important. I agree that some organizations put more emphasis at times on mental wellness when our biggest problem is Serious Mental Illnesses like SZ. However, I don’t know where else to go to get the knowledge and skills to learn about how to truly help our loved ones and keep ourselves safe, as well as advocate for a better future, except via NAMI. There are other local support groups in various places, I’m sure. I know of a faith-based support group that seems good but it has less presence around the country and it does not offer anything like NAMI’s Family to Family class. So I’ll take the best of what I have available to me and continue to advocate for help for SMI.

Here is another advocacy group that I heard about on a Schizophrenia Facebook group. It might be worth exploring:

Yes, I have heard good things about SARDAA for advocacy work but I didn’t know it offered Support Groups (it does, per its website). I’d love to know if anyone has any experience with this organizations or any other support groups. Great!

1 Like