Rebooting pyschiatry: time for a new set of disorders

I can't remember when I first decided that the psychiatric classifications I'd learned in medical school had outlived their usefulness. It was probably a gradual process, but by 2005 I wrote to a colleague "DSM IV was great in its day, but new knowledge is breaking down the simplistic classifications of the 1960s and 1970s. Schizophrenia, autism, etc -- bah, humbug. Those labels are better than nothing, but humans tend to confuse labels with reality …".

A few months later I took my rants public and went on for about 30 posts or so.  Soon I learned I wasn't alone, and by 2010 victory was in sight. I was a solitary crank no more.

After a bit of a hiatus the end came quickly, first with a frontal attack by the director of the National Institutes of Mental Health, then, amazingly, a NYT editorial. I mean, really, an editorial?

It's been one heck of a ride over the past 8 years. This rebellion must have been brewing for much longer in the research community, but I've been following this area pretty closely and it was cool to see it grow from nowhere to become a consensus. (I may be a crank, but I'm not crazy. I know my posts had no effect on this transformation.)

Okay, science has won. So now what ….

*cough*

Well, for now, we keep on using our legacy classifications -- either DSM IV or V, they're equally valid and equally invalid. Terms like "autism" [1], "schizophrenia", "depression",  OCD, ADHD, and "bipolar disorder" will remain guides to initial pharmaceutical therapy. Even more importantly, they will be the basis of reimbursement, regulation, disability support, and legal process for years (decades?) to come.

At the same time researchers will be using new terms to group people who seem to share common biology, including genetic programs and common protein expression. Those groups will cross traditional boundaries like childhood schizophrenia and autism; they will include some atypical minds that may be highly functional or advantageous in certain environments -- but that share traits with persons who live with disability. 

From new classifications will come better prognosis, better guides to treatment, and better outcomes. Our best guide to what lies ahead is to look back to the early 20th century, when people like William Osler and his colleagues rewrote the medical textbooks. In those days terms like "dropsy" were used to describe patients with heart failure, renal failure, lymphatic obstruction and venous valve failure. Four very different biological processes were assigned the same label and similar treatments. Reclassifying those patients was a first step towards scientific medicine.

Psychiatry, powered by the neuroscience renaissance of the past thirty years, is now taking the same journey.

[1] Aspergers', traditionally considered an autism variant, was dropped in the revised classification of disorders called DSM V. I understand the logic, but I actually think Aspergers was a relatively useful label. Ironic that we lost that one first.

Update 5/18/13 - my favorite psychiatrist blogger summed up our past and future worlds in two short posts:

• New Efforts to Overhaul Psychiatric Diagnoses Spurred by DSM Turmoil | Follow Me Here...
• Suicidal behaviour is a disease, psychiatrists argue | Follow Me Here...; An impulse disorder?

Transition and employment - notes from a Minnesota presentation

The special needs roller coaster starts to speed up again in 10th grade.

Tenth grade is when #1 is no longer encouraged to join mainstream sports teams, perhaps because the coaches are no longer educators. They are competitors. Tenth grade is when the gulf between him and mainstream students he admires becomes too big for him to ignore, and there's sorrow in his heart he does not understand and cannot express. It's when the focus changes from an educational track to an employment track.

Employment was the focus of a meeting I attended today. I won't try to summarize what I heard, instead I'll summarize what I think is happening in Minnesota and probably nationally. My summary has only a passing resemblance to anything I heard today, it's my own personal impression for which nobody bears responsibility.

To keep this short, so I can get to sleep, I'll do this in a series of bullet points.

How things used to work in the 70s-00s.

• After deinstitutionalization in the 1970s money was made available for community care of disabled persons in the form of waivers:
• DD: Developmental disorders
• CADI: Mental health (schizophrenia mostly)
• CAC: Severe medical (vent dependency now, once might have been more)
• BI: Traumatic brain injur (this may be more recent)
• The waivers were used to pay for various forms of what was once called Supported Employment for developmentally disabled adults whose primary income came from Social Security Disability.  Supported employment and related activities included:
• DTNH employment: piece rate and workshop activities that paid less than minimum wage. Aka "Sheltered workshops" or "Work Centers"
• Pre-Voc programs: ?
• Day Programs
• Adult day care
• Regular employment with funded supports and supervisors (and perhaps subsidies to employers?)
• Schools provided work experience programs and work rotation during transition (typically 19-21)
• These programs were administered by agencies (non-profit usually) sometimes known as "Employment and Alternative Service providers" and "Supported Employment Service (SES)" providers and typically organized by County though some provide services in multiple counties. (See 2009 Access Press directory and the Minnesota Habilitation MSP index)
• Kaposia
• ProAct (A friend recommends them)
• Center for Supported Independence 
• East Suburban Resources
• Lifetrack Resources
• Lifeworks Services
• Metro Work Center Inc.
• MRCI WorkSource
• Rise
• TSE-Inc
• Homes
• AccessAbility
• Merrick
• WorkAbilities
• Zenith Services

How things work in the 10s.

• There is much less money available to support employment. In particular, waiver lists are growing. To receive waiver support now may require homelessness. [1]
• With "Reform 2020" services will be less county specific and more state delivered
• Instead of "Supported Employment" we have "Customized Employment". This is employment that is in some way adapted to the special needs population though it is now used for any adjusted employment including part-time work. It is typically but not necessarily minimum wage employment and it is often part-time.
• There does not appear to be any direct financial or tax benefit to employers who do this, though adults on social security disability may quality for vocational programs like "ticket to work" and there are some SSI incentives that provide support.
• There may or may not be some form of external work support for non-waiver disabled (this is fuzzy)
• We have about 1-2 years of early experience in MN with Customized Employment and no data at all on how well it is working particularly in the new post-waiver era.
• There appear to be two paths to Customized Employment which roughly follow the adaptation vs. modification educational tracks.
• More disabled (educational modification, non-diploma track, social security disability): This tracks makes use of services like Kaposia to assist with finding job opportunities. These services are not available privately, they still rely on funding sources but seem to be able to find money from vocational rehab or county funds even when waivers are not available - at least at this time. At least some of one of these services claim good placement records "0 reject model" and they can be impressively creative.
• Less disabled (IEP, educational adaptation, diploma but not college): This track does not use "Supported Employment Services". This depends entirely on parents to arrange for networking, "informational interviews", employment training, work experience training and so on.
• IEP work experiences provided by school districts post-graduation (19-21) are being reworked and are less encouraged. It's not clear how well current grade 11/12 programs work.
• Employment opportunities do seem to rely on the kindness of local small businesses and a few large employers. Workers in the system prefer not to share employer information, perhaps for fear of overloading them.

It reminded me of a presentation I attended some months ago on housing services for the Minnesota special needs population. We learned that the old system was gone, the money was missing, and it was all up to parents now.

 

[1] Parenthetically, the prison-industrial complex is thriving, so we may have outsourced care of the mentally ill and developmentally disabled to the prison system. 

See also

• Adaptation versus Modification: Critical code words in understanding K12 special education. (plus Settings)
• Be the Best You can Be: Special education vs. standards based grading: What are grades for?
• PACER - Day Training and Supported Employment Programs www.pacer.org/parent/php/PHP-c199.pdf (Excellent summary)
• PACER - Resources for Families on Preparing for Employment
• Lifepages - Services - Search Results: Dated but one of the few references I could find
• T-TAP: Strategies: Customized Employment: Q&A
• DB101 Minnesota - Home
• Directory of Organizations for Persons with Disabilities - Employment
• State_Rehabilitation_Council_Report Center Based Employment.pdf 2011 - recommended
• Minnesota Habilitation Coalition: Industry group representing employment provision services
• Social Security - working while disabled. pdf - pamphlet for general disability
• Social Security Online - Work Incentives - Detailed Information
• Social Security Online - The Red Book - A Guide to Work Incentives the authoritative reference for SSI disabled special need adult work

Minnesotans with developmental disabilities can get a lifetime free fishing license and a fifty cent Minnesota ID card

Exemptions and fishing licenses issued without a fee: Minnesota DNR: "Permanent angling license issued to any Minnesota resident over age 16 who is developmentally disabled ... Available only from the DNR License Center."

I paid $6 for my 16yo to get his teen license, but we'll probably do this when he's 18. 

When I picked up this year's license I realized it's time for #1 to start carrying a wallet with at least his school ID. He's not keen on this; I suspect he won't like the sensation. A think sports wallet, or even a clip, is probably our best bet. That wallet can include a reduced-fee Minnesota ID card ...

A reduced-fee Minnesota Identification Card (similar in appearance to a driver's license) can be obtained through the Department of Public Services, Driver's Vehicle Services, with a form signed by a doctor or social worker. The cost is only fifty cents.

I wonder if that cost was set in the 1950s.

The physician form is available here. The rules for getting a Minnesota ID card are here, sounds like #1 needs his passport, a school photo ID, and a parent.

Connect WC: a superb MN resource for children and adults with developmental disabilities

Washington County is a predominantly exurban and suburban region west of the Twin Cities. I didn't expect it to be the home of well done website on Developmental Disabilities Resources and Information funded by the CCP Foundation [1]. Some of the material is Minnesota specific, but much of it applies anywhere in the US. Only a few topics are truly specific to Washington County.

I learned a few things about developmental disability options in our region -- and that doesn't happen too often. Some the pages to check out include:

• Sports
• Entering Adulthood: I didn't know my son could get a 50 cent (!) reduced fee ID card.
• Dating, Relationships & Sexuality

Despite the web site description, they mix physical and cognitive disability resources. They could perhaps do a better job separating those, but many people with cognitive disability also have physical disabilities.

 

This may be the best web site on special needs services I've seen anywhere - certainly the best in Minnesota. I've added this domain to the Google Custom Search for special needs services in Minneapolis and St Paul.

 

[1] Alas, its grant program just ended.

Transferring 529 assets to siblings

Long ago we created 529 plans for our children; including #1. Even then we knew #1 wouldn't likely go to college, but we also knew that when the time came we could switch beneficiaries to #2 and/or #3.

That time has come. #1 is approaching an age where we will assume guardianship. At that time he will become officially disabled and receive state financial support. The assets we can provide will be channeled through a protected trust.

I have the beneficiary reassignment form; I have only to complete it and put it in the mail.

This is not an easy thing to do.

Reminder: keep psych meds locked up

We've always locked up medications for basic safety reasons, but we've friends who've learned the hard way that this is a good idea.

There are two reasons to keep meds locked up. One is accidental or misguided misuse by a young or judgment impaired child. I've read stories of high functioning ASD adolescents overdosing on sedating medications to help them sleep.

The other reason, of course, is that many behavioral meds have street value and are widely abused. They can be a powerful temptation for teenagers.

So lock 'em up.

Adolescent special needs: Sometimes Judo works

#1 was on track to give up on mainstream hockey halfway through the season. I'd been using carrot and (proverbial) stick but he was dug in and sullen. It looked like he was going to lose one of his best growth and happiness sources, that he was going to drop out of hockey just as he'd dropped out of baseball last summer.

I was frustrated, but I could see I wasn't going to win. Better to lose this battle than to lose our relationship.

So when he challenged me to bribe him to finish the season I pulled a Judo move. I stepped back.

I sat down with him at a time I chose -- when he was at his best. I said that now that he was almost an adult, he really had to make his own decisions. I told him I thought he'd gain a lot from continuing and that it would make me happy, but it was his decision. There'd be no prize or reward for finishing the season -- just his usual post-hockey chips or soda. There would be no punishment for dropping out ...

Well ... I cheated a bit on the last. I didn't want him substituting iPhone-zombie-time for his hockey. So there'd be no computer/iPhone use during times he would have been at hockey. He could read or do other activities [1].

Of course, as you can guess from the post title, it worked. At first he was uncertain, but one night we walked through the season schedule. He picked one late night practice he'd skip and one he'd miss due to a High School sports conflict. (He ended up missing only one practice when I was out of town and we couldn't bring him.) After that review he was relaxed and enthusiastic.

I don't know if it was my talk that worked, or the support of his coaches who also had Special Hockey experience, or if a girl he liked said something nice about his hockey. At his age I'm only one of a lot of influences, and probably not the biggest one.

I was surprised that he did so well; I don't think this would have worked in the past. His mind is developing -- he's starting to have more of a sense of time and of future events, and he's starting to work with abstractions like "promises" and "obligations" and "duty" and "honesty". He never used to respond to 'negative' feedback [2], but now he seems to consider consequences a wee bit beyond the immediate.

I don't want to overstate the changes. A bird in the hand is still worth a thousand in the bush. There is progress though, and reason to celebrate another victory. [3].

- fn -

[1] We have very limited household television access.
[2] Hence our heavy use of positive incentives and extinction rather than the balanced approaches that work for most children. We have a neurotypical daughter, and she essentially raised herself with a minuscule parental contribution. Our #2 is at the Asperger's end of the spectrum but is super-sensitive to feedback. #1 is different. Yes, we snort milk out our noses when we read conventional parenting books. 
[3] Our philosophy is to celebrate victory often. So every time we can plausibly declare victory, we do. There should be a name for this philosophy; it results in a lifelong string of repeated victories until the game is called.

See also 

• Reading about autism and ADHD - our personal favorites 11/2007
• Changing behavior in children: Kazdin for most and what we do now 4/2008
• Net world and guiding the special needs adolescent - tricky business 3/2013
• Special needs adolescence: separating compulsion from poor choices 8/2012
• Special needs adolescence: enter the unknown country. 8/2012

Net world and guiding the special needs adolescent - tricky business

#1 is less than two years away from legal adulthood. In his case that will mean guardianship, but more independence nonetheless.

So he gets more freedom, including an iPhone Facebook.app account I can monitor. He doesn't know the account password, I entered that into Facebook.app on his 2nd hand contract-free $10/month Paygo iPhone.

We review his Friend list and activity about 1-2 times a week, and of course I visit his page from my Facebook account and from his account. It's not foolproof of course -- like most 3rd party iPhone apps Facebook.app ignores the iOS Safari setting and allows unfettered web access via embedded Webkit. (Yes, Apple's parental controls are a joke. Android's are even worse.) At his age though, even that backdoor is a bit of a feature. It lets me more or less observe how he handles it.

So far, so good - but there's a twist. He likes to save images he finds on the pages of his High School friends and acquaintances. They are views into a world he cannot join; I grieve for that. I think, in his own way, he grieves as well. The pictures are generally benign, but they are pictures of 15-18 yo boys and girls. He is prone to share them via his iOS Photo Stream to his brother and I.

And that's the twist. Pictures that are reasonably appropriate for the phone of a 16yo boy are not a great idea for the phone of a 50+ yo man. It took a week or two for me to think of this and turn off his photo stream. I'll have to simply review his phone, which is easy to do each night.

Tricky business being a special needs parent in the net age.

Special education in Minnesota - The MinnPost series on costs and funding

In the 1960s Minnesota education was a mess. It was funded entirely by property taxes; those who had the least need got the most funding, those with the greatest need got the least. [1] The disparities were egregious. Then, in 1971, came the "Minnesota Miracle". Education was increasingly funded through state taxes.

 

This worked very well for Minnesota, until, in 2002, Minnesotans elected GOP governor Tim Pawlenty and a Republican legislature. They reduced state funding and shifted overall funding back to property taxes; this benefitted their base and harmed the state.

 

Now, 11 years later, education in Minnesota is struggling. Not surprisingly, the effects are being felt most strongly in the funding of special needs education. MinnPost, a digital only nonprofit [2], has put a series together on the topic:

• Most vulnerable students to get one-two punch under sequester | MinnPost
• Meet the cross-subsidy, an increasingly painful way to pay for special ed | MinnPost
• The safety zone: Inside a school where no student's needs are too tough | MinnPost
• Legislative wish list crafted to better help schools' most challenging students | MinnPost
• Special education cross-subsidy: Where has it grown the fastest? | MinnPost

The Star Tribune has a also published a related article: Rising special ed cases are huge cost to Minnesota schools.

 

There's a lot of material in the articles. A few key takeaways, with the caveat that the articles are sometimes more anecdote than science:

• Some of the cost increases may be related to the education and support of students who, as recently as 10 years ago, might have been institutionalized. As we've learned more about educating special needs students, we're also handling more difficult challenges.
• There are three regional school districts that focus on special needs education, including New Hope's North Education Center in District 287. They serve about 3,600 students, of which 2,000 were referred in from a home district which pays the bill.
• The average MN student costs $11K/year to educate, the average special ed student costs about $20K/year to educate [2], and the students in the North Education Center supposedly cost $70K/year. [3]
• A "large" percentage of St Paul's severe EBD students are African-American and only 30% are ever in a regular classroom [4]. There is significant pressure to at least partly mainstream these students.
• St Paul's special education district spent @98 million on special education, but only received $62 million in state funding. In other words, special education services are an underfunded state mandate [8]. The remaining $36 million came from other educational programs; the term "cross subsidy" is sometimes used to describe this funds transfer [5].
• Obsolete rules mandating particular adaptive technologies waste money; iPads are much less expensive and much more desirable. [6] 
• The sequester will cut $7 million in Title I funds [7] and 9.2 million in federal special ed funding.
• The special-ed population has risen from 13-15% of the state's student body over the past 10 years. [9]

It's challenging to interpret these articles because, as my footnotes attest, there's a lot of missing data. My sense is that the overall demand is stable or slightly up, but that we are educating children who once received little education. Most of all, we are living with the damage done by Tim Pawlenty and his GOP legislature, and their reversal of the "Minnesota Miracle" educational funding system. That damage has been compounded by the Great Recession, demographic trends, and a shift from public to private/charter schools.

 

On the bright side, we are emerging from the Great Recession, the GOP are out of power for the moment, and the Accountable Care Act's mental health funding may allow schools to offload some of their services to the healthcare sector. From our experience, there are ways to improve the quality of special care education while also reducing the costs -- though they may require some 'no-child-left-behind' reforms. We can certainly change laws that mandate use of expensive and obsolete technologies.

 

There are issues here, but they aren't insurmountable.

 

- fn -

 

[1] American public education is often funded through taxes on property. Most nations think this is insane, and a major contributor to America's socioeconomic distress. Most nations are correct.

[2] We donate.

[3] We have two children in special ed. #1 is in a modified track, # in an adapted track. It would be interesting to see where the extra 10K goes; I suspect it's partly for speech and occupational therapy. There's also a lot of administrative overhead in managing special ed students.

[4] How large? No data. 

[5] The 2007-2008 budget was 630 million. Assuming it's now about 660 million, the cross-subsidy would be very roughly a 7% "tax" on other programs but in some articles this is described as 20%. The descriptions of what is meant by "cross subsidy" are not always clear.

[6] I've read that elsewhere. The rules require the devices be single purpose, that rules out modern adaptive devices.

[7] Poverty focused funding, but that includes many special ed students.

[8] Unfunded mandates are a common political vice.

[9] We don't know how much of this arose because of shifts of students out of public schools to private schools, or if this number counts charter schools. Given "wealthy flight" in MN over the past decade this might be little true change.

Title IX for disabled student sports?

I've had concerns with my #1's school, but some very dedicated teachers have provided him with adapted floor hockey and adapted soccer activities. For him this time is more valuable than most of his coursework.

The exercise is good -- adapted floor hockey is more work than I'd naively expected. The social activity is more important though. He's able to work and play with his peers. 

It wasn't easy for his teachers and the schools to put these programs together. They have to work around the fuzzy boundaries of "CI" and "PI", a divide that predates autism spectrum disorder. His teammates are technically "PI" (physically impaired) but most have some degree of "CI" (cognitive impairment) as well. In his case the CI is significant and the PI a bit of a stretch -- but "pure" CI opportunities are very limited.

For #2 son, who has "high functioning" autism, there are no school sport options. Whereas #1 has a relatively easy time joining adapted or mainstream sports teams, #2 would need some inventiveness. (He does quite a few sports -- but on his own terms.)

For both of my boys, and for special needs students in general, there may be some good news on sports access....

Education Dept. Clarifies Law on Disabled Students’ Access to Sports - NYTimes.com

The Education Department’s Office for Civil Rights clarified legal obligations Friday for school districts in providing access to sports for students with disabilities....

... The guidance concerns Section 504 of the Rehabilitation Act of 1973, a law that deals with the rights of disabled people who participate in activities that receive federal dollars.

A school district ‘is required to provide a qualified student with a disability an opportunity to benefit from the school district’s program equal to that of students without disabilities,’ according to the Education Department.

Advocates for disabled athletes, some of whom have pressed legal claims against state athletic associations in recent years, praised the clarification of rules and said that as a result, participation for disabled athletes could rise.

‘This is a landmark moment for students with disabilities,’ Terri Lakowski, chief executive of Active Policy Solutions, a Washington-based advocacy group, said. ‘It will do for kids with disabilities what Title IX did for women. This level of clarity has been missing for years.’

At least 12 states have passed laws in recent years requiring schools to include disabled students in sports and other extracurricular programs, and the Education Department’s guidance is considered a complement to those laws.

‘Taking them together with the state laws means more opportunities for disabled athletes,’ Lakowski said. According to the department, a district’s legal obligation to comply ‘supersedes any rule of any association, organization, club or league that would render a student ineligible to participate, or limit the eligibility of a student to participate’ based on disability...

That sounds encouraging. But ..

... No student with a disability is guaranteed a spot on an athletic team for which other students must try out, according to the Education Department. But districts must ‘afford qualified students with disabilities an equal opportunity for participation in extracurricular athletics in an integrated manner to the maximum extent appropriate to the needs of the student.’ ...

That sounds like it's meaningless.

I think it's premature to call this "Title IX" for disabled sports access, even if we remember that it took a lot of lawsuits to make Title IX more than words. I'll go with "encouraging" for now, but we need to watch where this goes. It may make a difference if litigation is needed.