Wednesday, March 25, 2009

Stigma, Advocacy, and Having a Really Rough Time of it: From Guest Blogger Retriever

Roy wrote about the NAMI mental health report card by states, Maryland got a "B." The post got a heartfelt comment by Retriever, and I'm borrowing (with permission, and some minor typo editing) that comment to use as a guest post. Retriever writes:

Stigma limits advocacy. The main one is that patients who are trying to pass as normal-- to hold onto jobs or not embarrass their children-- can't lobby politicians, educate peers at work or at church, because, if they have a family to support, they can't risk outing themselves.

We have a kid who is autistic and bipolar. High functioning, but spent nearly a year when 8 psychotic, manic, a danger to himself and others, with no meds working at all for him. My husband was laid off from a job because his company would have had their insurance rates doubled if they continued to keep him on the payroll and insured, because of our kid's diagnoses. Mental health care is expensive.

People still judge mental illness, especially in kids. Social workers at least initially assume that the parents are abusing the kid. Neighbors and coworkers assume that the child is ill because of bad parenting. Parents would actually like to blame their own bad parenting because that is actually under one's control as, say, mania is not. They'd be happy if they could just go to a course to improve and Junior would stop seeing snakes and hearing voices.

People like cute, grateful pitiful victims to help. The reality is that people pass the hat to collect money for a piteously bald kid with leukemia and his family, but nobody ever passes the hat for a psychotic eight year old whom the hospital will not admit because (I quote) "your insurance will only pay us 60 per cent as their reasonable and customary charge, but DCF pays 100 percent. " Hence the kiddie psych unit having 95 per cent DCF kids.

Increasingly the move is towards care "in the community" and to closing public facilities like the state hospital that saved my kid's life (when manic and psychotic) because it would actually admit him and keep him there long enough until he was no longer a menace to himself. Where I live (one of the richest communities in the country) none of the private clinicians are willing to treat severely mentally ill children, so one is sent to a child guidance clinic which limits the care and usually provides it with cheap, relatively new social workers who can barely spell the name of the diagnosed condition let alone have any expertise in it.

And my state got a B.

I do what I can in our church, to educate the SS teachers about how to work with our many kids with various mental health issues (we are the most hospitable in the area to them, and bend over backwards to include them, provide one-on-one shadows, and make equal demands of them so that they are not marginalized--this approach was what most helped my kid). And I talk with parents of the newly diagnosed kids, and badger them to take the various special ed courses on how to do battle with the school system.

But it's a drop in the bucket. You can't talk openly about the truly appalling behaviors of your beloved kid, or people would never feel comfortable around them. You can't tell people why it makes you yourself hideously depressed. You dread any phone call from the school lest it be the dear sweet Buddhist teacher telling you that Junior (hypomanic despite meds tweaking) just told him to STFU.

Most of all you can't testify publicly, or write except anonymously or lobby or preach (I am a former minister) for real parity, and greater compassion for these reasons (to recap):

  • The ill child (and their siblings) are entitled to anonymity. I am uncomfortable with all the mommies writing first person accounts with their real names. I wonder how their kids feel? It may be therapeutic to the mom, but could mortify and increase prejudice against the kids.
  • Employers lay off people with high insurance costs, although they do not admit it. Sometimes, if one is a valued worker (as I have been), the employer will look the other way. But in cost cutting times, if one advocates publicly, the bean-counters at HR will find a way to get one axed.
  • At least with pediatric psychiatry, the shrinks really don't know how bad it is or how much stress is on the family or the other kids caring for violent, manic, agitated kids at home. They don't care that spouses lose their jobs because of having to keep picking up an agitated kid from school, or stay up all night with one and getting too many phone calls at work from MDs.

Community care is like all the " I want a pony" stuff back when people abolished the snake pits in the fond hope of lovey dovey community group homes, etc for the mentally ill. In reality people said NMBY, there weren't the funds, and it is actually harder to prevent abuse and bad care in group homes than in large institutions.