Ritalin and Adderall shortages -- the DEA and the other side of outrage

Beyond outrage, there is a point where we can only laugh and cry...

F.D.A. Is Finding Attention Drugs in Short Supply - NYTimes.com

... While the Food and Drug Administration monitors the safety and supply of the drugs, which are sold both as generics and under brand names like Ritalin and Adderall, the Drug Enforcement Administration sets manufacturing quotas that are designed to control supplies and thwart abuse. Every year, the D.E.A. accepts applications from manufacturers to make the drugs, analyzes how much was sold the previous year and then allots portions of the expected demand to various companies.

How each manufacturer divides its quota among its own A.D.H.D. medicines — preparing some as high-priced brands and others as cheaper generics — is left up to the company.

Now, multiple manufacturers have announced that their medicines are in short supply. The F.D.A. has included these pills on its official shortages list, as has the American Society of Health-System Pharmacists, which tracks the problem for hospitals. And the American Academy of Child and Adolescent Psychiatry has told the more than 8,000 doctors in its membership that shortages seem to be “widespread across a number of states” and are “devastating” for children.

Officials at the Food and Drug Administration say the shortages are a result of overly strict quotas set by the Drug Enforcement Administration, which, for its part, questions whether there really are shortages or whether manufacturers are simply choosing to make more of the expensive pills than the generics, creating supply and demand imbalances...

Let us set aside the trivial matter. Drug company CEOs would sell their mother's liver to "meet expectations". I'm sure they're exploiting every legal and even semi-legal angle they can find in an age where patents are expiring and the drug pipeline is dry.

That's not the problem though. Just think for a minute about how this is supposed to work. The DEA wants to stop the recreational use of stimulant drugs. They do this by restricting the supply. So recreational use will stop because one of two things happen. Maybe the drug companies, who get paid either way, will start assassinating stimulant dealers. Alternatively, parents of kids with ADHD will put on capes and masks and start beating up college kids prepping for exams.

Yeah, think about that. How else are these DEA restrictions supposed to work?

Now if you're a relatively young person you may be thinking senior leadership at the DEA couldn't really be this stupid. Trust me, powerful people are often stupid. It's almost a prerequisite.

It's time to contact Senators and Representatives. Again. Here's what I'm sending Al Franken and Amy Klobuchar..

Dear Senator

I read in the New York Times that DEA quotas on stimulant drug production are leading to shortages of critically important medications for the treatment of ADD and related disorders.

I understand that the DEA has set these quotes to motivate parents of children with ADHD to prevent the recreational use of stimulant medications. I assume we're supposed to don costumes and start pummeling stimulant dealers to reduce diversion.

Please ask the head of the DEA to explain to you and all of us how their production quotes are supposed to work. In detail. Repeatedly. Until they get a clue.

Thanks very much...

Special Hockey

It's the start of another special hockey season in Minnesota. I've just reviewed the slideshow from tonight's game, and the teams look great.

Even after 6-7 years of it, I'm always a bit amazed that it works. The range of players is mind-boggling. One team has a (mercifully) gentle forward who's 6'8" - and all muscle. We have six year olds. Girls, boys, women, and men. We have players who are minimally verbal and players with Aperger's who take advanced study classes. We have chair bound players pushed by aides, and players who've played mainstream hockey.

We have gentlemen players and we have ... well, actually, the range there is pretty limited. This is a good group of people; even my excitable #1 son is learning some manners.

There's been a lot of progress. Even players with significant motor disabilities often learn to skate. For my #1 it's a chance to have fun in a setting where he doesn't feel embarrassed or anxious or "other". He can play with neurotypical teams at school and community, but he can never truly be a part of the team. For #2 it's been an unequalled opportunity to learn flexibility, to live with mistakes, and to work as part of a team. Even, this year I think, to learn to lose gracefully.

There are many similar opportunities in Special Olympics, but for us this activity has worked extremely well. While #1 could quality for Special Olympics, he performs at a relatively high athletic level for the sports he likes (he may play SO Golf next year). I don't believe #2 would meet Special Olympics guidelines, yet Special Hockey has been enormously valuable for him.

It's a movement worth supporting.

High school tips (grade 9)

We're about half-way through grade 9 for #1 son at a Twin Cities public high school. I'd grade the beginning as a 'C', but now we're probably B+.

These are somethings that have worked for us; things have gotten easier as my son learns the system and improves his organizational skills. B+ is pretty good considering the dire funding situations -- aides in particular are hard to find.

1. We really focus on his "Planner". Dad tries to review all kids planners every day. Stickers and credit for writing things down, especially when assignments are handed out and when they are due. It took about 1 week but now all use planner well.
2. We use his planner to communicate with his Aides. I think there's some benefit to this. In our school system we cannot contact an Aide directly.
3. Wrote 1 page dossier on him for teachers to read. They don't get much information on students.
4. We read the parent portal web site regularly. It's not great software, and I think the teachers struggle to make it work, but it's better than nothing.
5. His teachers do very well with email. Phones and meetings are a lost cause -- but email works very well. I didn't expect that, nice benefit.
6. In our IEP we requested gym every trimester. For our guy this is a big help. Physical activity helps him. We sacrificed Art and Technology (computer skills). The former is probably a lost cause, and the latter he gets at home.
7. We have a regular weekend slot for homework and a classmate/friend with somewhat similar disabilities joins him for this. I think this is helping both of them, it certainly helps my guy.
8. We are very aggressive on following up on missed assignments. The Parent Portal can help with this -- esp. prior to end of trimester it gets updated. We track down and do missing assignments.
9. I am surprised that he can do simple algebra and his basic physics equations. I didn't expect that. He does get help from an aide there, but he's still writing out the expressions and completing many of them. I think his science teacher feels we're exaggerating his disabilities.
10. His history teacher is relatively demanding, which is working well. Of course he's not evaluated at grade level, but to get a B he has to actually work. If he doesn't work, gets a D. This is a good opportunity to push his cognitive limits. It's a fight of course, he wants to scrawl some illegible roughly related words and move on. Even so, it's not that BIG a fight. For this class I review the topics myself, translate them into diagrams and notes that are very close to answering his study unit questions, then give him those to interpret. I think he's picking up some history, but mostly he's learning to read, interpret and write. (I'm also picking up some history. His "World History" class is light years better than what I had. (I've studied quite a bit of history since, but there's a lot to be said for a grade 9 level overview!)
11. He's done very well with adaptive sports and we continue to sign him up for those. He also does mainstream sports teams, so there's some push and pull there. Either way - real value.

Aspergers and crying: maybe not a career killer

We're proud and happy with how boy #2 is doing in middle school. Teachers pleased, good grades, he seems happy to go to school. Still has trouble crying though. I think of it as an Aspergers trait; he cries when he's frustrated or upset.

I also think of it as significant career handicap. Maybe I'm overstating things ...

Why xxxx cried

... xxxx cried over just about everything. He cried at the beginning of Apple after Woz's father pushed his son to take more ownership of the company because he thought xxxx wasn't doing much work. xxxx went over to Woz's home and bawled his eyes out. Woz kept him on.

xxxx cried when his employee badge said #2 instead of #1 (which went to Woz), then ended up getting badge #0. He cried when Apple pushed him out of the company. He cried at Pixar during a battle with Disney. He cried when Time put the Mac on its cover instead of him. He cried when he saw the famous Apple "1984" ad for the first time. He cried about Windows "copying" the Mac. He cried over design questions, like when the iMac team put a tray-based CD drive in the machine rather than a slot-loading drive. He cried over deep issues of personal privacy, such as the moment his cancer first became public and shareholders were braying for information. He cried because he wanted the original Apple II to have a one-year warranty, rather than 90 days...

Of course xxxx was Steve Jobs.

So evidently a crying problem need not be a career killer.

As to whether this hypersensitive obsessively detail oriented creative with supreme synthetic skills and narrow interests had other Aspergers traits ...

Information wants to be licensed?

We're always on the lookout for new therapeutic interventions, particularly behavioral interventions for our guys.

Since we're physicians, we're used to finding those interventions in handbooks, manuals and the like. Knowledge that comes with a creation history, but that is public.

Of course even in medicine that's not quite true. I've always been struck by how little ophthalmology, for example, is actually written down. Yes, there are lot of ophthalmology textbooks, but they seem to leave out a lot of the actual practice of eye care. Orthopedics was the same way. General medicine had the best public coverage.

In the 1980s medical-process patents began to appear in clinical practice [1], though, surprisingly, Congress actually moved to limit their impact in 1996. In Nursing care several "instruments" are owned by publishing companies and cannot be used without license.

There are similar issues in science, particularly in genomic research. The "iceman" (Otzi) genome is still a carefully held sequence, worth fame and grants to its owners. Archeologists are infamous for restricting access to ancient documents (ex: Dead Sea Scrolls).

So in the worlds of science, engineering and medicine there's a spectrum of open knowledge.

We're discovering that much of behavioral therapy for autism tends towards the closed end of this spectrum; many programs are patented and unpublished.

I'm unsure how important this is. It may be that patented programs are not only "secret" but also unstudied. Idiosyncratic therapeutic interventions may be harmful or wasteful (in this world, since time is limited, wasteful is harmful). Perhaps we're better off not knowing what's in them.

On the other hand, secret knowledge is yet one more obstacle to information sharing in the cognitive disability community. It's a part of a bigger problem that's getting more of my attention...

[1] Link intentionally made to a NEJM restricted access article.

Adaptive textbooks for special needs learners

My #1 has two mainstream classes - science and history.

In the days of the lesser depression he is missing the aide service he needs to track the classes. I think we can work something out for science, but history is harder. His teacher loaned us a copy of his history text [1]; that was a bit of a trick since our increasingly impoverished schools no longer have textbooks for home use.

I find I can write a readable summary of a book chapter in about ten minutes. He can't read the chapter, but he can read my summary and use that to complete his homework.

I haven't been able to find anyone who has done something like this. I'm a bit surprised that

• teachers don't do this
• the state doesn't do this
• foundations don't do this

I'll be doing it. If there's interest leave a comment and I'll find a way to make my summaries available.

I did find a single essay by a doctoral student written in 2005 that included some relevant legal information ...

Digital Textbooks and Students with Special Needs - Jennifer Courduff = Teachinghistory.org

For teachers, digital textbooks provide assistive technology in compliance with the Individuals with Disabilities in Education Act (IDEA, 2004). This law requires that assistive technology resources be made available to all persons with disabilities and provides funding to make these resources possible. In addition, Public Law 100-407, the Technology-Related Assistance for Individuals with Disabilities Act, requires that all students who are exceptional receive technology resources that support access to grade-level appropriate content...

... Digital textbooks are being developed using a universal design for learning (UDL) approach. UDL strategies do not water down content. Rather, complex content is presented using simpler language with supportive hyperlinks to definitions of cognitively difficult key vocabulary and concepts. Following UDL strategies, core content can be scaffolded to meet the cognitive levels of individual learners (1). Scaffolding content enables students with special needs to learn grade-level content within their zone of proximal development, thus providing content that is easy to understand while remaining aligned with curriculum standards (2)...

Personally I have no problem with "watering down" content. I do that every time I present my work to graduate students or senior vice-presidents.

The "UDL" material sounds interesting, but from what I can tell this is an aspirational academic enterprise. Nobody is actually making a UDL textbook of history for my son to use.

Guess it's just what I write then.

[1] Prentice Hall, World History, Connections Today.

Update 10/21/2011: I'm publishing my custom version of World History as I write it. You can get the latest version here, but it's being updated every week or so. No rights reserved.

High School: don't assume staff actually communicate

#1 is now in High School. He seems to like it and we're proud of what he is doing. On the other hand, the school is short resources.

That's not a surprise. The lesser depression has been persistent. We were a bit surprised to learn, however, that at least one of his mainstream teachers didn't know much about his disabilities -- or even that he had an IEP.

We shouldn't have been surprised though. We're physicians, and we know docs have trouble communicating about patient care. I used to tell my patients to always copy notes and results and hand carry them between caregivers. It was by far the safest way to pass information.

So we've drafted a summary of #1 and sent it to all his teachers. Now they know a bit of his story, what his disabilities are, what he likes, what works best, etc. Seems to be helpful.

That leaves his aide(s). (Supposed to be plural, but it looks like he's got about 1/3 of an aide in 1 class.) Schools, for reasons I can guess at, make it very hard for parents to communicate with aides. Everything is supposed to go through the (overloaded) teacher.

There's a fix though. My son carries a "planner". We've started using that to pass messages to his aides through him. They write notes in the planner -- such as the assignments #1 invariably "forgets". (One advantage of a defective memory subsystem is that "forgetting" is an awfully convenient excuse.) Old paper and ink technology goes where email can't.

Update: Things get better.

No credit

#2, Aspergers, wails and berates me for half the ride. Kind people glare at me. I am the worst father.

Then he climbs the big hill. He finishes it all. He is proud, happy. He will always remember this. He will remember how he showed his doubting father. It will empower him.

I will be forgiven.

No credit though.

Only satisfaction.

Guanfacine (Tenex) and working memory

#1 takes both Ritalin and Guanfacine (Tenex and other trade names) - longterm. So I track research on both meds.

Ritalin is as well understood as any brain med. As best we can tell it's unreasonably safe and effective for ADHD, despite a trashy article in a pop science magazine.

Guanfacine, a second line med for ADHD also used (off label) for "explosive" kids, is much less studied than Ritalin. The proposed mechanisms of action are interesting, it seems to increase certain kinds of neuronal connections and to perhaps facilitate learning capabilities.

On the one hand, this is encouraging. Working memory deficits are a significant component of most developmental disorders of the brain. On the other, it's disturbing. When clinicians hear "increased cellular activity" in brains we think "cancer" and "seizure".

Fortunately, so far, there's no sign of that (though we're in early days). There is, however, continued research on Guanfacine's effect on working memory and task performance in primates. Studies have recently moved to using elderly primates, but results are mixed. As best I can tell from the abstract, this was a negative result (A typical child dose of Guanfacine would be .04 mg/kg) ...

Effects of the alpha-2 adrenoceptor agonist g... [Eur J Neurosci. 2011] - PubMed - NCBI

Alpha-2 adrenergic receptors are potential targets for ameliorating cognitive deficits associated with aging as well as certain pathologies such as attention deficit disorder, schizophrenia and Parkinson's disease. Although the alpha-2 agonist guanfacine has been reported to improve working memory in aged primates, it has been difficult to assess the extent to which these improvements may be related to drug effects on attention and/or memory processes involved in task performance. The present study investigated effects of guanfacine on specific attention and memory tasks in aged monkeys.

Four Rhesus monkeys (18-21 years old) performed a sustained attention (continuous performance) task and spatial working memory task (self-ordered spatial search) that has minimal demands on attention. Effects of a low (0.0015 mg/kg) and high (0.5 mg/kg) dose of gunafacine were examined. Low-dose guanfacine improved performance on the attention task [i.e. decreased omission errors by 50.8 ± 4.3% (P = 0.001) without an effect on commission errors] but failed to improve performance on the spatial working memory task. The high dose of guanfacine had no effects on either task. Guanfacine may have a preferential effect on some aspects of attention in normal aged monkeys and in doing so may also improve performance on other tasks, including some working memory tasks that have relatively high attention demands.

The doses are interesting here -- much lower than a human therapeutic dose and much higher. They were also looking at a one time dose effect. This reads like a mini-pub as a research team gears up for the real research. It's a modest investigation, and they basically didn't find anything. (Give the cost and ethics of primate experimentation one assumes there's much more to come.)

So the results are pretty meaningless. What's interesting is that the research is gearing up.

We should learn a lot more about the risks and benefits of Guanfacine over the next five years. For now I'm comfortable with our son's use of this medication.

The unpredictable upside

Spin type school combination locks have never worked. It didn't help that #1 liked the idea of a key. Alas, despite his remarkable reliability with his phone, he kept losing keys.

This year he likes keys less. It's part of not wanting to be different, which is both unfortunate (he is different) and another powerful behavioral lever.

So I geared up to again try to teach him the spin lock for school use. I drafted a table with directions on the left, drew the spin direction, and did the combination in large font in a separate column. Working to separate the idea of the common actions from the unique combination.

Next came the question of incentive. This is an anxiety producing activity coming from his father. He does very little of this nature without a short term reward. Computer time alone was not enough. He wanted a MacBook Air. We compromised with an account on my Air -- a machine that he's lusted to touch and that has been mine alone.

He did it in one. Then he did it again.

I can predict what my neurotypical child can and can't do. I can't predict him.

Adolescent special needs - the epic trip

35 friends and relatives across five sites. Two provinces and 7 states. More than 3,300 miles of driving. It was an epic family car trip.

A car trip with 1 dog, 1 neurotypical child, and two boys on the spectrum. Two boys, and two hormone wracked adolescent.

It was a great holiday. We had no need of a lawyer, a physician, a veterinarian, a mechanic or a psychiatrist.

So it can be done, assuming one is a special needs veteran and accustomed to crises that might topple a regular parent. The mixture of motion, of car time and time limited but intense visits seems to work for our guys. It's not something I remember from the days I read parenting texts, but we're data driven. We go with what works.

The trip is an opportunity to reflect on the autistic adolescent. On the one hand, the desires are intense, and there's a complex mixture of the adult and the child. On the other hand, intense desires are also opportunities for the Machiavellian parent (as we must be). They give us new challenges, and new levers.

More problematically, behaviors that could be ignored in a fresh faced child are more sensitive in a strong jawed neo-adult who needs to start shaving. Punching was never acceptable, but now it's dangerous.

The upside is that we're seeing an overall improvement in most behaviors. I don't know why that is. Maybe it's just practice, but I'm hoping his brain is better able to sequence events, to connect action with reaction, and perhaps even to anticipate consequences, to be able to plan towards an end. The improvements, at this time, are pulling ahead of the downsides of adolescence.

Only 80 years to go now ...

Intrauterine contributors to autism

A recent twin study (NYT.com) claims that only 40% of what the researchers considered "autism" was clearly genetic. Previous studies estimated a 90% rate. The greater causes was something occurring prior to birth.The researchers further claimed that most (about 58%) of the environmental causes were shared.

These are remarkable claims, and they will require remarkable evidence. I am very skeptical.

If there is a common intrauterine cause of brain injury, however,  we do need to look again at obstetric ultrasound.

See also:

• Be the Best You can Be: Ultrasound, neuronal migration, and autism (8/2006)
• Gordon's Notes: General weirdness on the net: ultrasound, autism and satire (An essay was published in 2006 on ultrasound, school violence, and autism. It was a satire.)
• Gordon's Notes: Ultrasound and the developing brain – lessons from manipulation of mouse neuron (1/2009)

GettingHired - a job search site for persons with disabilities

GettingHired - Jobs for Disabled is a job search site for persons with both physical and cognitive disabilities.

I've added it to my custom search engine, which, Google tells me, now indexes 17 million pages.

Highland Park High School Special Education

Highland Park High School Special Education is a Facebook page for parents, family and students of a St Paul High School's special education program.

Adolescent computing and OS X Parental Controls - training wheels

My 14 yo's computer skills have continued to be a real strength. Of course, being both 14 and having disabilities in executive function, he does not always use them wisely.

Years ago I hoped the iPhone and other iOS devices would provide app-restricted services while limiting web access. Sadly, I've been disappointed by Apple's deceptive iOS "parental controls" [1]. That didn't work very well. On the other hand, monitoring his computer use and punishing misuse isn't working that well either. We can't be looking over his shoulder everywhere -- such as in his school room.

So now I'm trying Plan B, an educational program of trial and reward based on techniques that have worked before.

I've set up an account on a machine using OS X Parental Controls [2]. I've whitelisted a number of sites he's interested in, including bing.com [3]. I give him 10 minutes every day to use the machine without me watching. When he's done we review his history and log files together (in Parental Control mode history files can't be wiped -- he learned that trick at school).

If he's used the computer responsibly, he gets some reward tokens. If he hasn't he doesn't get any and I make the whitelist more restrictive. Since I'm trying to extinguish the bad behavior I keep things dull.

He's keen on this, and so far he's doing well. My plan is to keep broadening the list and reducing the parental controls, rewarding self-control over time.

I'm sure it won't fully succeed, but at the very least I'm hoping he'll learn some discretion. If he can think for a second before acting, he may avoid a lot of trouble.

[1] I'm trying various channels to get Apple to improve, including contacting legislators and this email to Consumer Reports ...

I'm writing to ask you to include 'parental control' functions in yuor next evaluation of smartphones.

We've been very disappointed in the parental controls Apple provides; in some ways they're worse than nothing. It seems we can limit web access by disabling Safari, but many, many apps contain embedded browsers. Once a child has access to an embedded browser, they can usually find their way to a Google search and abundant porn.

Embedded browsers are found in encyclopedias, MLB (major league baseball), reference works, educational materials, and many others.

The fix is simple. Apple needs to provide a parental control that restricts embedded browsers. Until they do, iPhone parental controls are a deceptive fake.

If you include parental control functions in your evaluations, Apple and other vendors will pay attention.

[2] They're mediocre at best, but they're (barely) enough for this experiment. See updated documentation below.
[3] Though Bing's parental controls are even worse than Google's he's less familiar with Bing so he doesn't dodge them as readily.

Update 5/29/11: This is working better than I'd hoped. The huge advantage of Bing.com over Google.com is that Bing doesn't use https. So OS X Parental Controls show a meaningful history of sites visited. I'm going to explicitly block Google.com but permit Bing.com.

Update 6/12/11: History files cannot be wiped in the most strict form of parental controls. In the "automatic detection" mode they can be wiped. See Gordon's Tech: OS X Parental Controls Review - State of the art in OS X 10.5 and 10.6.

Adult prognosis of autism syndromes - expert anecdotes

I am not aware of any good academic studies on the adult outcomes for children with autism syndromes. The presumed diversity of the underlying injury and recovery mechanisms makes hard research even harder. So the best we can do for now are anecdotes from clinicians with longterm experience ...

Experts Discuss Autism's Long-Term Course - NYTimes.com

Several readers had questions about the range of adult outcomes in autism and how treatments may affect outcomes in individual children....

More and more individuals with autism are now able to function independently as adults. This is a major change over past decades, probably reflecting earlier diagnosis and more effective treatments. There is a very good summary of this in a chapter by Patricia Howlin in the Handbook of Autism (2005, Wiley).

Unfortunately not every child gets better. Sometimes the outcome seems to relate to the severity of the autism in childhood. Individuals whose disability is more profound continue, as adults, to need considerable support and help. It is unfortunately the case that for this population, services are often minimal, research is sparse and resources are lacking. The federal government has identified this as a priority area in autism work, and rightly so.

But even when we are fairly optimistic about an individual child, he or she may not do well as an adult. This is one of the reasons those of us who have been in the field for a long time are very careful about predicting the future to parents. We can only talk, in general, about what on average are good or bad prognostic factors.

For individuals with autism who can go on to college, a number of resources are available on the Yale Child Study Center Web site, including books and links to programs. Options range from small and very supportive programs specific to individuals with autism and related disorders, to traditional colleges and universities. Our book, “A Practical Guide to Autism,” also has a chapter on the topic of adults and discusses college services.

Daily living and adaptive skills, along with organizational skills and abilities, become even more important during the college years. It is important that students and parents realize, though, that changes in the law (the Americans With Disabilities Act now applies to such children) mean that college is not a right, and that those with autism can and do get expelled. Issues relating to sexuality and apparently inappropriate behavior are frequent reasons cited.

Minnesota Life College adding community college features ...

This reminds me of a New Mexico residential training program I blogged on. I found it from a link on the Autism Speaks MN adult services directory ...

Minnesota Life College

... Beginning in the Fall of 2010, Minnesota Life College will add a new component to our program curriculum. In partnership with Minneapolis and Community Technical College (MCTC), we will provide our students the opportunity to experience a traditional Community College or Vocational Technical program, through a specifically designed curriculum that includes the ACCUPLACER test, study strategies, organization of work and time, tutoring and a 2 credit ‘Strategies for College Success’ course at MCTC. This component is designed for the MLC student that wants to see if a Community College or Vocational Technical program is the next ‘right’ step for them during or after MLC...

Transition Tool Kit from Autism speaks

Autism Speaks [1] has put together a Transition Tool Kit targeting families with special needs children ages 14-22. The goal is to support transition into the community when school services end.

The kit is downloadable, but as best I can tell the kit is the same set of PDFs that are found on the above page. An "online appendix" is a curated set of links to additional information.

The kit is pretty generic, because state rules vary [2]. Autism speaks has state resource guides (ex: MN) with sections on adult transition. Minnesota's data is a well done list, and it includes a state specific transition guide.

I'm including all of MN specific information in my MSP special needs custom search engine.

[1] In the past they've been associated with the immunization obsessed, but I wonder if they're trying to get clear of that crowd.
[2] At some point, do we relocate to a state with better services? What happens when millions of retired adults begin driving their mobile homes around the nation, desperately seeking dwindling services for their adult children? Just wondering.

Adapting to fewer resources for special needs children and adults

The future is looking kind of gloomy for most Americans ...

Care of special needs adults in post-employment America

... the Great Recession grinds on. The percent of employed adult Americans (employment-population ratio) is now back to where it was in 1976, when most women weren't in the workforce. The annual incomes of the bottom 90% of US families has been flat since 1973...

Some Americans are astoundingly wealthy, but most of us are not. The direct and indirect costs of care of a disabled child, or adult, means special needs families were stressed even when American social supports were relatively robust. Now things are getting harder ...

... Many young adults with autism have transitioned into large residential systems, whether group homes or institutions, offering round-the-clock services. But waiting lists can be long. And increasingly, in an effort to stem costs, states are moving away from the group home model into family-based care, a trend that started about 10 years ago.

... Nationwide, 59 percent of people who receive autism services are living with their families, according to Mr. Lakin...

... Don Meyer, the founder and director of the Sibling Support Project and the creator of Sibshops, a network of programs for young siblings of children with special needs, said: “Parents need to share their plans for their special-needs child with their typically developing kids. After Mom and Dad are no longer there, it is likely it will be the brothers and sisters who will ensure their sibling leads a dignified life, living and working in the community.”...

We are now seeing long group waiting lists in Minnesota, yet we aren't yet seeing the direct cash transfers to families that are reported in Connecticut, Arizona, Vermont and New Hamphsire. In place of group homes we now have "housing access services" -- suited for persons who can live independently.

We're going to have to figure out how to adapt to this. I have ideas, but I need more people ...

The twilight of "schizophrenia"

Neurologic disorders, alas, are not going away. The concept of "schizophrenia", however, is shuffling off the stage.

Today's obit comes from Kwang-Soo Kim, a stem-cell scientist at McLean Hospital in Belmont, Massachusetts:  "These disorders are not really disorders. There's no such thing as schizophrenia. It's a syndrome. It's a collection of things psychiatrists have grouped together."[1]

Just like autism. Autism is a collection of "things" psychiatrists have grouped together, sustained by law, regulation, tradition -- and the current lack of a better alternative.

[1] Schizophrenia 'in a Dish': Scientific American 4/13/2011

See also:

• Victory: The war against 20th century psychiatric diagnoses is all but won

Google Custom Search - Special needs services in Minneapolis and St Paul

I'm still experimenting with this, but I've created a Google custom search engine for special needs services and activities in the Twin Cities region: Google Custom Search - Special needs services in Minneapolis and St Paul.

I've also embedded the search engine into the right hand side of my blog page.

Lifepages - a MSP catalog of activities and resources for disabled persons

This was mentioned in a recent Highland Friendship Club meeting ...

Lifepages

... Life Pages was developed with people with disabilities in mind, but the site is truly useful for everyone. Life Pages is a great way to keep track of activities around town that you might not otherwise know about. Anyone can create a profile, which allows you to save favorite activities and sign up to receive e-mail alerts when new activities are added. The site has one feature, invitations, which is available only to Partners In Community Supports (PICS) member agencies...

The site footer says "copyright 2005" and the activities calendar was empty. I browsed some categories and saw some I know, but the search function doesn't seem to work.

On the other hand a Google search of the form

• site:lifepages.org [search terms]

works well [1]. It allowed me to find the entry for the Institute on Community Integration ..

Home | Institute on Community Integration (ICI)

... Welcome to the Institute on Community Integration. We are a federally designated University Center for Excellence in Developmental Disabilities (UCEDD), part of a national network of similar programs in major universities and teaching hospitals across the country.

As a UCEDD, the Institute is funded under the provisions of the Developmental Disabilities Assistance and Bill of Rights Act of 2000 by the Administration on Developmental Disabilities in the U.S. Department of Health and Human Services. The federal law provides funding to several other Minnesota organizations: the Minnesota Governor's Council on Developmental Disabilities and the Minnesota Disability Law Center...

Clearly it's an old site, but there's still a great deal of information there.

[1] Or you can try this custom search engine I'm playing with ...

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The expectations trap

Four months ago we learned lessons from two family bicycle outings. One was an educational failure. The follow-up was a memorable success.

No denying, I was proud of that one. I wouldn't have thought it possible just three years before. If we weren't willing to risk failure, we wouldn't established a new baseline.

That's why I was willing to try another crazy idea. This time we tried a mass nordic ski event after dark in unfamiliar territory. This went well beyond last year's Nordic ski resort.

We applied what we'd learned. We studied satellite maps of the ski route and the surrounding territory, developing and revising our primary and backup plans. We researched parking in detail. We took a car and drove the route at night -- that's how we learned event map's major parking area was now a massive hole in the ground. We adjusted our plans accordingly. I took both our special needs guys with me on the event day to collect our race bibs -- so they could see the parking and starting area in daylight.

We left early on event day, which meant we got the prime parking garage rather than our fallback option. At the event we adjusted plans; one of our guys needed to race, so we aborted a rendezvous and left ten minutes early.

It was easy. The only glitch was a bit of overheating while fussing with race bibs indoors. I expected to need more of our contingency plans. As it was, I had only to track the son who's prone to getting lost. His brother with the oddball savant visual abilities raced far ahead, and, as expected, materialized from darkness whenever we reached a stopping area.

It was easy, but maybe it was too easy. Now I need to wonder if I've fallen into an expectations trap.

The expectations trap is what happens around 9th grade in most schools. Instead of the slow, tedious, work of developing reading and other academic skills, teaching focuses on "social skills". These can be fun for all involved, but for some it's too easy. They could do better. The expectations trap is inside the comfort zone; it closes options too soon.

I think I need to move my expectations up.

 

National Sports Center for the Disabled - summer and winter recreation in Winter Park, Colorado

Colorado's National Sports Center for the Disabled is an amazing resource.

... Founded in 1970, the National Sports Center for the Disabled's mission is to positively impact the lives of people with any physical or mental challenge through quality adaptive recreation programs in over 20 sports. The NSCD’s impact on lives is direct, immediate and visible. Over 23,000 lessons are provided annually...

The NCSD is located in Winter Park Resort, Colorado (map info - route 40 west of Denver). They serve our community ...

ADD, Amputation, Arthritis, Autism, Behavioral Health, Bone Disorder, Brain Injury, Cerebral Palsy, Deafness, Developmental Disabilities, Diabetes, Down Syndrome, Epilepsy, Fragile X, Hemophilia, Learning Disabilities, Little People, Multiple Sclerosis, Muscular Disorder, Muscular Dystrophy, Nerve Disorders, Neurological Disorders, Paraplegia, Post-Polio, Quadriplegia, Respiratory Disorder, Spina Bifida, Spinal Cord Injury, Stroke, Substance Abuse, Vision Loss/Blindness...

Of course the winter activities (2010 brochure) are amazing. It's the place I'd take my family for a snowboarding or skiing vacation. The NCSD will arrange for travel package reservations and they offer scholarships. They offer the "NCSD Broome House" condo reservations particularly for NCSD participants.

There are summer options too (2010 brochure)...

... NSCD Sports Camps, rafting, kayaking, canoeing, special camps, horse pack trips, therapeutic horseback riding, mountain biking, overnight river trips, fishing, camping, and rock climbing...

Definitely a resource worth remembering.

So why am I just learning about This now? It's been around for forty years.

There's something broken somewhere ...

What can we learn from extreme dog training

Two stories about what dogs can learn.

The first is about teaching word sounds to a border collie. It is, as best anyone can tell, a true story.

Dog Might Provide Clues on How Language Is Acquired

He bought Chaser as a puppy in 2004 from a local breeder and started to train her for four to five hours a day. He would show her an object, say its name up to 40 times, then hide it and ask her to find it, while repeating the name all the time. She was taught one or two new names a day, with monthly revisions and reinforcement for any names she had forgotten.

... In three years, Chaser’s vocabulary included 800 cloth animals, 116 balls, 26 Frisbees and a medley of plastic items...

... The 1,022 words in Chaser’s vocabulary are all proper nouns. Dr. Pilley also found that Chaser could be trained to recognize categories, in other words common nouns. She correctly follows the command “Fetch a Frisbee” or “Fetch a ball.” She can also learn by exclusion, as children do. If she is asked to fetch a new toy with a word she does not know, she will pick it out from ones that are familiar...

The second story is from The Awl (via Brad DeLong)...

It’s a week before the biggest day of her life, and Anna Williams is multitasking. While waiting to hear back from the Ivy League colleges she’s hoping to attend, the seventeen-year-old senior at one of Manhattan’s most exclusive private schools is doing research for a paper about organic farming in the West Bank, whipping up a batch of vegan brownies, and, like an increasing number of American teenagers, teaching her dog to use an iPad.

For the last two weeks, Anna has been spending more time than usual with José de Sousa Saramago, the Portuguese water dog she named after her favorite writer...

Anna takes José Saramago’s paw in her hands and whispers in his ear. He taps the iPad and the web browser opens. José Saramago gives a little yelp.

“It’s entirely conceivable that a dog could learn simple computer functions,” says Dr. Walker Brown, the director of the Center for Canine Cognition, a research facility in Maryland. “Word processing, e-mailing, even surfing the web: for many dogs, the future is already here”...

Alas, the second story is a parody. It is fiction. After reading the first story though ...

Given enough time, patience, and interest a dog can learn the rudiments of language. It goes slowly. It takes insane persistence (Is Pilley Aspergerish?), but one word a day adds up over time. I'm sure someone, somewhere, is now training their dog to use an iPad. They will make the Awl story partly true (maybe not the word processing though).

There are lessons for those of us who work with special needs children ... teens ... and adults.

My eldest's verbal processing tests at the pre-primer level. He reads at somewhere between third and fourth grade. And yet, he does truly remarkable things with his iPhone. He continues to learn. HIs learning is slow, but faster than Chaser. Alas, he's not as keen -- unless one were to count the increasingly sophisticated iPhone games he plays.

Alas, he has only a few years of formal education left. I have some concerns, even now, about how much will be done in the next few years. "Life skills" are needed, but he is not going to stop learning at 19. I think, given time, he could read at the fifth or sixth grade level -- which starts to work him into the normal range. I suspect he'll never have strong receptive language, but he may do more with reading and writing. He already converses more effectively by text than by spoken language.

His digital skills are exceptional -- an order of magnitude better than some of his linguistic reasoning skills. There are things to work with.

Somehow I have to figure out how he will continue to be taught, and to learn, until he's at least fifty ...