Still reeling from the details of the *actual* policy proposals put forward by Democratic presidential candidates yesterday. I beg all of you to read the proposals themselves, not just the happy little tweets that link to them. https://twitter.com/ConnConnection/status/1161949040927485953

Some of those proposals reflect a true lack of understanding of reality of psychiatric care and its institutional history; demonstrate that candidates/staff have spent too much time talking to family members & caregivers rather than people living with mental health conditions.

That is the crux of the problem. The only reason you propose weakening HIPAA privacy protections for one group of marginalized people is if you haven’t actually talked to any folks who claim membership and boldly identify as being in that group.

I’m a person who lives with a mental health condition. I have a history of being subjected to involuntary hospitalization, forced medication, seclusion & restraint. I am a lawyer and represent people in state-operated inpatient psychiatric facilities.

The last thing this system needs is more beds - unless you want to return to the past where we institutionalized disabled people and lock them away. Too many politicians - of both parties, this seems to be bipartisan - seem to traveling down that road lately.

The promise that has never been kept - whether you go to Kennedy signing the community mental health act in the 60’s or on a state level, Connecticut closing two of its large state hospitals in the 90’s - is adequate investment of resources in the community-based system of care.

Inpatient hospitalization is *supposed* to be for crisis stabilization, not for long-term institutionalization. People don’t recover in hospitals - they get well in community when they have access to the services and supports with which they want to engage.

Forced treatment DOES NOT WORK. Recent studies have demonstrated high risk for suicide just after discharge from inpatient stay. What system is doing is not working, for so very many of us, but instead of talking to us about our solutions y’all just want to do more of the same.

Can’t even begin to say how disappointed I am in so many of these candidates whose actual policy platforms (not just their happy little tweets announcing them) represent potential significant harm to some of our most marginalized folks.

I urge folks to see how often policy makers talk about disabled people being vulnerable. That word vulnerable takes away our agency. Yes, we may be vulnerable to bad actors - as all of us are - but we are uniquely vulnerable to the oppressive systems set up to “help” us.

If you consulted with actually disabled people, we would share with you things that have been actually helpful and/or incredibly harmful. You would recognize the power we have - a power inherent in being human - to make decisions about who has access to our private information.

One of the most damaging things a healthcare provider ever did was contact my parents when I was in mental health crisis during law school. When I showed up for my appointment with the school psychiatrist the day I was civilly committed, my dad was already in her office. I was 23

I knew the second I saw him that nothing good was going to happen that day (long story) Sharing now: it made me angry at my dad. I didn’t trust him. I didn’t speak to him in the ambulance. I made so many angry calls to my mother she had to stop answering her work phone.

It would have been one thing if I ended up being transported to the hospital without either of them knowing and then making the call *myself* to let them know what was going on. I would have seen them as on my side from the beginning - instead of perceiving them as the enemy.

And I’m super lucky - I had and have amazing parents (dad passed away a decade ago; mom’s the best) and a truly wonderful spouse. I trust all of them explicitly, which is why I’m willing to sign consent forms for them to have information.

Here’s the problem: too many people I know personally do not share my good fortune. Their parents and/or spouse are abusive; they don’t want other people to have private information, for their own safety and well-being.

Government policy should not be set based on the demands of family members who present themselves as well-intentioned. It should be set on the basis of protecting the most marginalized people who otherwise can not protect themselves.

If people don’t want to sign HIPAA consent forms to release info to a family member, there’s probably a reason. Take time to explore that (also allows you to build therapeutic alliance!) but don’t take the person’s power away because they are in emotional distress or use drugs

If you’re that concerned that someone will lack capacity to communicate consent in the future, encourage that person to complete an advance directive that addresses the question of communication of private health information to others.

TL; DR some of the policy proposals being sold in happy little tweets as increasing access to mental health care and/or aging care are not that. They reflect a bias for institutional “care” and devaluing the agency of marginalized folks. Not good. Encourage everyone to read more.