Saturday, May 19, 2007

Taking a lesson from autism

An article in my local paper got me thinking yesterday. If the autism parents can get their shit together to push for more comprehensive insurance coverage of their kids' illness, why can't we?

Jim Lock himself, one of the gurus of the Maudsley method here in the U.S., once told me that eating disorders parents should model ourselves on the autism parents. As a group they've dedicated themselves to not just supporting their children but to advocacy on all levels--especially, now, with regard to insurance coverage.

The article quotes an autism professional as saying "Most of the major autism organizations, both providers and support groups, have come together in agreement that insurance coverage for all individuals with autism is a positive and important need."

Same goes for anorexia and bulimia, as well we know.

Like anorexia, autism is often not covered, or covered poorly, because it's classified as an emotional disorder rather than a brain disorder. But I say, if your brain isn't considered part of your biological body, then what is it--a disembodied organ floating in space?

One of the autism advocates is quoted as saying "We're continuing to work together in the hope legislators take notice that the need is not going to go away and we're not going to go away."

Hey, what about us? What about those of us who have watched our children waste away or go through hell, only to be told that insurance doesn't cover therapy, or IP treatment or whatever the doctors are recommending at that moment?

What about people like Anna Westin, whose smart, articulate parents fought like hell to get her well, only to be turned down by insurance eventually? Anna committed suicide, and her parents took her experiences to the state insurance commissioner and to the courts and won not just money but also changed the way insurers in Minnesota cover anorexia.

We could do this, state by state. That's what it's going to take, probably, unless we can get the federal mental health parity bill passed.

I'm sick of "steps forward," though, and "making progress." We aren't making progress when it comes eating disorders. What will it take?


Anonymous said...

EDC does some good work and recently had lobbying day to push their "dream bill." I'm also impressed with AED's "Worldwide Charter" and "Bill of Rights."

Unknown said...

I think it is going to take a critical mass of motivated parents. So many of us are demoralized and exhausted after caring for an ill child - and too many get poor advice and care and don't ever GET to a safe place with their child.

We need every parent with any energy to join EDC and NEDA and write letters and lobby Congress and talk to their doctors and schools and coaches and neighbors.

If you think your voice won't matter - think again. It does. If you don't speak up and speak out you are part of the problem.

Fiona Marcella said...

I don't suppose my voice would make much difference in Congress what with coming from the wrong continent, and many of my attempts at local political advocacy have fallen on deaf ears, but I've been delighted at the response from the good guys (actually most of them so far have been girls) among the professionals to my recet national campaigning. We CAN shout loud, but you are right Laura, many of us who are in the thick of it are too tired.
Incidentally in this country it's my (unsubstantiated) feeling that the Autism lobby isn't any more orgnised or heard than an other mental health lobby - we are all in the gutter, but we CAN look to the stars.

Maggie Ginsberg-Schutz said...

I'll never forget the day I was finally ready to get help. I spent all day crying over the yellow pages in my lap, unsure what section to start in, calling number after number and being rejected over and over and over again. The mental health people didn't want me, and neither did the so-called nutritionists. The eating disorders clinic on campus had recently closed. I was utterly shocked at how many places were fighting for my dollar to help me LOSE weight, but not a single one in town would help me gain. I ended up at University Hospital, which really wasn't the best fit, and I also ended up with a huge chip on my shoulder (don't give an anorexic another huge reason to not get healthy, you know?) I quit it all, relapsed a couple more times, and finally just did it on my own. Like cancer, I think these grassroots efforts should include a support center full of resources. Now, this was 10 years ago. Hopefully things have changed?

Anonymous said...

Dear Ladies,

As usual, I'm late jumping in on these wonderful posts... I'm too tired and too stretched to attend to everything at more of a timely manner- sorry!

I hear everyone here on this topic and knowing directly what we've been going through with the horrible treatment we've gotten with our d- nothing has changed. Though they, i.e. some snooty docs, therapists, Rogers Memorial/Aurora Psych IP programs really think all parents are so damn gullible- and let's face it, when you're desperate and fighting for your child... they KNOW we are at our lowest and can be manipulated to pay any amount to warehouse our kids to the most cruel, experimential, and outdated "treatments" for ED that still exists!

I still find it absolutely insane that the ins co will NOT pay for any of the OP therapy- even if it is with therapists that have years of experience with ED's; but will cover ALL IP costs at ineffective treatment centers with "reputations" that are based soley on the commercialization and goals of expansion of their programs. Of course because these programs have more to gain $$-wise by warehousing the ED patient; and really they are just pushing a product here folks to be bought and billed continuously for- even if it doesn't give any beneficial results. We're all supposed to just wait this out until our bank accounts are drained, marriages broken apart, and lives completely ruined.

ED's are treated as a business- plain and simple right now. And until more Dr's like LeGrange, etc. get others on board to practice what they preach, and truly support and help assist parents and families to help their child recover change will not happen. Yes, along with the scientific data; it's of utmost importance as well, but again, I ask what the hell have they been doing all these years? The hostility that I've encountered towards us as parents trying to advocate, question, and really discuss prevention, awareness, etc. has been so deflating and damn frustrating!

Oh, yes they will take all the publications, and resources we're digging around to research and find to help build some imaginary treatment "team"... but what are they doing NOW for us while they keep billing and making apt's that go nowhere?! Why are there just a handful of us parents that are voicing these concerns, and why are they not listening?

How insane is this situation we have here in Milw, WI with the damn Medical College... yes a huge mega-complex Medical reseach/college facility with an ED program with a Dr who has been on staff for aprox 30+yrs, who rambles about her Stanford studies, etc. and where is this woman TODAY in terms of ED's? We saw her about 2-3times! She is the one who referred our d out to an IP facility that they told us had an established ED program which it did not- and our d was literally in lock-down with other seriously dangerous youth- ? Nice one. Where are the therapists for ED's... oh they can't get them- why? There aren't any trained- what? This is a medical college... what are you talking about? But then they send us some complete lunatic pediatric psychologist who barked at our d and frightenend her while she was hospitalized, etc. and were all so eager to push drugs vs food for treatment. This is enough to make anyone insane! They are not doing zip to change treatment/f-u of ED's here, and even the Doc we're seeing is just lazze-faire about our d now since her weight is stable- she just thinks we need to find the therapist (and that has been like a needle in a haystack!) and voila- all done!) If only it were all so nice and neat as all that. She'll be away for 6wks now- vacation- another "conference" maybe on ED's; so we just need to be on our own per usual- thanks so much, have a nice day...

I think what gets me even more angry is that we as parents are going to actually be helping some of these same damn individuals/Dr's/treatment centers who actually have no interest in seeing ED patients RECOVER keep a good paying career! No one is checking their records and aligning any accountability within this illness. I have also "spoken up and out" but nothing has changed; and in actuality I've been met with even more distance and hostility for this- so now what? And I would guess also, that many a parent is also somewhat wary of voicing too much so that their child will not be mistreated or even further stigmatized or alienated with outspoken and vigilant parents- what's the balance here?

What "grassroots" are we talking about- where is it? This "critical mass of motivated parents", I can't find it, and when I put the feelers out there to find anyone else, I hear just an echo- no one answers. And I would have to drive hours to find some form of commarderie and parent support- why is this? Surely we are not the only one's here in our area dealing with this, but you would definitely think that were the case considering.

Laura, Harriet... what can I do- I mean REALLY do, that will make any difference? And also where is the support for me as a parent so that I can not only help my d more effectively, but keep myself centered and sane, outside the obvious?

Is there some type of collective we can form as parents that will begin to make some headway here in terms of ins co covering necessary therapy treatments, effective and mandatory training for docs/therapists; and expanding those treatments to include more holistic and complementary alternatives like massage, ayurvedic, herbals, and accupuncture? I've found many of these additional therapies so much more beneficial, but all completely out of pocket and still so resisted by many Dr's.

I'm also so tired of these Docs not sharing their info with eachother and really beginning to put together more of a wider perspective, support, prevention and depth within ED's; especially with female athletes.

My d has been a dancer since about 7 for the Milw Ballet, runs X-country/track, and does various other sports, but you would think that these organizations, schools, etc. would have any clue how to better help and support us through this? Naw... and do they want to even? No! I've had to dig around, find additional physical therapy (again at the Medical college, wow! of all places- they have a Sports Medicine clinic there- go figure!), but how can these docs be working all so close in proximity to one another, yet are so completely blind to what they are all doing in the bigger picture?

Our d's ED doc was actually rather hesitant to having us make this referral- why? She's not at all trained in sports related injuries, yet we know with ED's and athletes, etc. and really any physcial activity, you have to really monitor not only their adequate energy intake, but really keep on track of any potential injuries and work on restrengthening, possible muscle loss through hospitization, lack of movement, (which I was not in agreement with after our d was medically stable)... they wanted her to give up everything and replace it with nothing- recipe for another disaster!

They have no middle ground to their medical recommedations long term. And so many of these Dr's are so damn territorial and arrogant that it takes a chisel to get down to any human element of relationship- let alone them living up to their Hipocratic Oath!

Growing healthy kids need not only loving supportive family/friends, fresh, nutritious whole foods; but activity, (and that is going to vary for everyone, etc.), that engages their minds as well as their bodies in passions of their choosing. Unfortunately, we live in a culture and society that just loves to condemn ballet when a discussion of AN takes place, even though our d's AN did not happen as a result of ballet, or running, etc. Then they want to blame it on school/academics... funny, did these doctors not have academic pressures growing up, did any of us? C'mon. There are pressures involved in many aspects of life- period. Do we just give up, tell our kids to give up? Are AN's to just continue to disappear, (outside of modeling mags and catwalks, etc.), not talk about it, hide it's victims, even though some of them, like my d, are the most quiet and invisible of the bunch within ED's? There seems to be this really bizarre dichtomoy that happens more with what we've experienced with the treatment of our d's AN here anyway. And in my opinion it really is so counterproductive towards fully helping those afflicted climb the wall towards recovery- because there is a wall built to shut them out and shut them up (or their parents I should say!) and have them just give up. Why?

We are living in an age where BOTH weight loss and gain are being so craftly marketed to get the biggest $$ for "treatment centers" ED "specialists", diet programs, etc. It's absolute bonkers!

I do like your "critical mass of motivated parents" idea, Laura. How do I get into this group, and what can I do to help? "Getting organized"... okay, how exactly. What is our agenda? If I'm to write to my congress, etc. is there a particular letterhead that you have found very precise in capturing their attention and getting them to respond in kind?

Harriet, you're in Madison, WI's capital, is there anything happening there locally directly involving ED's currently? Someone there whom we, as parents can contact directly who would be helpful in this cause?

I think parent support and the entire idea of family care respite is still an absolutely vital idea which I would like to see culminate into something real. Again, we have a Ronald McDonald type facility here at the Medical College of WI, but does anyone have any first hand experience with anything of this type of offering working currently? Does Minnesota have some type of family respite program?

Can a Maudsley type Parent resource and support center be formed- physically/locally and how might someone implement some type of library resource, group support sessions, etc. to get going with of course the support of a Maudsley trained individual? This would be really great.

Perhaps something like they are having in Michigan with their Maudsley parent supported training and adolescent support? I had given the info to my d's ED doc and asked why something like this could not be happening here in our area- think waiting for them to get something like this going is going to take too long. I need to find someone who actually gives a damn and has some clout and gumption to carry through. *sigh*

Okay... I've rattled per usual on and on. Could you expect anything less of me at this point?

Wishing the best to all of you and let's keep the dialogue going on brainstorming within the formations of grassroots organizations for local Maudsley Parent support groups- PLEASE!

Shanti~ Tracey

Harriet said...

I can only imagine what you went through. When we started looking for help for our daughter, we heard over and over that there USED to be a great e.d. clinic in town but it closed "because insurance companies didn't want to refer people to it" because they didn't make as much money on something out of their own networks. Sickening. You deserve huge kudos for doing it on your own, which is unbelievably hard.

I don't know of anything specific to Wisconsin going on with e.d. advocacy. But my sense is that this has to be a national effort because each state has its own mental health parity rules. What we need is federal legislation that would supersede the states' laws, so that, for instance, someone with anorexia in Minnesota would be treated the same as someone in Wisconsin. Right now you're much better off if you live in one of the 33 states with mental health parity (Wisconsin is not one of them, sadly). It's still only a start, but it would be a good one. I believe the federal Mental Health Parity Act is further along in legislative committee this year than it's ever been before. I think getting it passed would be a huge first step.