Semi-Annual News Round-Up

Just kidding!  I hope to summarize recent news more frequently than that.  But admittedly, it's been a while.  So let's plunge in:

1. Earlier this week, the WSJ published an article about the increased prevalence of certain diseases and conditions - like fibromyalgia and chronic fatigue syndrome - in school aged children, and the ability (or lack thereof) of schools to provide them with FAPE.  The particular challenge with these conditions is that often, the student struggles to attend any classes at all; home and online tutoring are often necessary (but expensive).  Add to that general skepticism that CFS and fibromyalgia are "real" conditions, and you have a situation where schools are pushing back and challenging requested accommodations.

I thought the article was reasonably balanced, weighing the truly difficult issues of how to educate kids with such draining conditions.  However, there were a few statistics thrown around that I thought were a little disingenuous.  One special ed consultant (guess whose side he's on) estimated that in 1970, special education's share of school budgets was 4%  - in 2005, it increased to 21%.  He also cited the figure that the average cost for special ed students is $17,500, roughly double the figure for typical students.

Now, I don't know if the numbers are at all accurate.  For one thing, I really doubt that the $17,500 figure is true nation-wide.  But regardless, these figures are misleading.  Special ed students are not stealing from typical students' education.  States receive extra funding from the federal government under the IDEA to support special ed students - so comparing the cost to educate special ed students vs. typical students is apples to oranges.  So I worry that a parent of a typical kid who's reading this article says to herself, "Wow, those valiant school districts doing so much for these ungrateful kids and parents.  The cost of the special ed kids must be the reason that our middle school cut the art program."    And if you think I'm worrying for no reason, I've quoted an actual comment to the article below:

"Made-up diseases: Chronic fatigue syndrome, learning disability, and marginal personality disorder.  Whatever happened to words like lazy, stupid, and jerk?"

Sigh.

2. A few days ago, the US House of Representatives  approved H.R. Bill 2218 - Empowering Parents through Quality Charter Schools Act (who comes up with these names??).  Here's a 3 page summary, here's the full monty, and here's a policy slant on it.

This is one of a number of bills that will be reauthorizing ESEA.  It's certainly good news that students with disabilities were expressly mentioned, but I'm not sure what, if anything, will end up changing.  Charter schools seem to be a total crap shoot when it comes to educating kids with disabilities.

And that's all for now folks!  Want to try to end on a semi-positive note!

Weekly News Roundup - Frontier flight gone wrong

Hey folks,

Last week's news roundup was pretty weighty, with the Arc's disability supports report, and the WHO's report on international incidence of disability (still plowing through that one myself!).  Nothing quite as big this week, but just one story that reminds me of how much further we have to go in our collective respect for those with disabilities.

Frontier Flight Gone Wrong. This past Sunday, a young man named John Morris who is quadriplegic was not permitted to stay on a Frontier flight from Dallas to Denver because the pilot thought it "unsafe" to permit him to stay.  The excuse was that since he had limited upper body control, it would be unsafe for him to fly.  Nevermind that there was no problem with his flight from Denver to Dallas two days earlier - John had simply used the seat belt extension that the airline carries to secure his chest, and he was traveling with two companions who were quite familiar with his needs.

In the discussion that followed, several passengers overheard Frontier employees saying that company products couldn't be used as medical devices.  (Wha?)  And so these passengers volunteered their own belts or whatever they could to help John.  That was rejected.  Instead, the pilot called the local police!  No really!  The police talked to everyone, concluded it was not a police matter, and told the pilot.  Pilot still refused to take off with John on the plane.   Finally, John and his family left the plane and boarded a later flight.

Repercussions for the pilot?  Zero.  Repercussions for Frontier (so far)?  Zero.

This kind of intolerance is unacceptable.  If you agree, let Frontier know, and vote with your feet.  You can file a complaint here.

Weekly News Roundup - Arc Survey, WHO Report, and a TV show with a silly premise

Big news week, actually!  Let's dive right in.

ARC Report on Disability Supports:  The ARC is a great non-profit organization that focuses on improving and supporting the lives of people with intellectual or developmental disabilities (commonly shortened to I/DD).  This week, they released the results of a survey of 5000 individuals with I/DD and their family members about everything from employment and educational opportunities to family and local supports.  The full report is on the ARC website here.

The results were a little discouraging.  While progress has definitely been made - witness the closure of state mental institutions, for one thing - we are falling short in supporting individuals with I/DD.  Here are just some of the reported stats:

• 52% of families reported that their family member with I/DD left school without receiving a high school diploma, including 10% that never finished high school.
• Only 8% report having any college level experience
• 4 out of 10 parents report being dissatisfied with the quality of education their students with I/DD received in primary/middle (40%) or high school (38%).
• 85% of families reported that their adult family members with I/DD were not employed, either part-time or full-time.
• 58% of parents/caregivers report spending more than 40 hours per week providing support for their loved one with I/DD, including 40% spending more than 80 hours a week.
• 1 out of 5 families (20%) report that someone in the family had to quit their job to stay home and support the needs of their family member.
• More than 75% of families report they can’t find afterschool care, non-institutional community services, trained reliable home care providers, summer care, residential, respite and other services.
• 62% of families report that services are being cut in the community, limiting or eliminating access to community life and opportunities for their family member with I/DD.
• One-third (32%) of parents/caregivers report that they are on waiting lists for government funded services, with an average wait of more than five years. They are waiting for personal assistance, respite, housing, therapy, employment supports, transportation and more.

Given this situation, the ARC has issued a call for action to all of us.  We need to publicly support individuals with I/DD - support their inclusion in the community, education, and workplace opportunities.  We need to vote. 

World Health Organization Survey on Disabilities: For the first time since the 1970s, an NGO tried to determine the incidence of disabilities world-wide.  The WHO survey states that about 15% of the world population (about 1 in 7, or, 1 billion people) lives with some kind of disability.  Their disability categories included individuals with difficulties seeing, hearing, walking, remembering, taking care of themselves or communicating. Worldwide, the most common disability in people under the age of 60 is depression, followed by hearing and visual problems.

That's pretty similar to the 1 in 6 figure recently estimated by the CDC.  So while data collection and reporting may be imperfect (especially across international boundaries), at least it seems in the right ballpark.

In the forward to the report, Stephan Hawkings offered the thought that we, society, have a moral obligation to remove barriers to participation for individuals with disabilities.  After all, the chances are that all of us, at some point in our lives, will be disabled, temporarily or otherwise.  (Picture progressive vision or hearing loss; a temporary mobility problem; menopausal memory loss).  I'm not sure we're going to get very far towards social change, however, with a moral argument.

I'm hoping that there are economic or other arguments in the report.  Since it's 350 pages long, I haven't had a chance to fully digest it yet.  I'm sure I'll be posting more about it.

Switched at Birth: Ok, this TV show (on ABC Family) has the worst name, and the silliest premise of pretty much any show on TV right now.  You guessed it - it's about two families where the daughters were (drumroll) switched at birth!  Ugh.  However, it is oddly well done, and the reason I mention it here is that one of the daughters is deaf.  So she and her non-birth-mother-who-raised-her are fluent signers, she goes to a deaf school, and her best friend is deaf.  It's the first time I've ever seen people using sign on TV, and I think it's just great. 

You can download the first two episodes from iTunes for free, if you missed them.

And in personal news, I got my echo LiveScribe pen!  I am so excited to start making audio books for Siobhan.  I will let you know how it works out.

Weekly News Roundup - NY Times Expose, Time

Maybe I should call this the bi-weekly news roundup, but that doesn't have the same ring!

The big news this week was the  NY Times expose on abuses in institutions for the developmentally disabled.  It's appalling on so many levels - on the order of "this can't be happening today".  But it is.  If you haven't seen any of the coverage, check out the article - but only if you're already having a bad day.  If you're having a good day, save it for another time when you're already in a bad mood.

Time did a piggy-back piece, also depressing and a read-it-at-your-own-risk.  The author had an interesting angle, though, on the issue of power and authority, and likened what's been happening at institutions to some of the famous psychological experiments (Stanley Milgram, the Stanford Prison Experiment). 

Ok, let's find some happy news, can we? Mmmm, let's see, school budget cuts; various school districts are being accused of mishandling school vouchers for kids with disabilities; parents of kids with autism exhibit stress symptoms akin to combat soldiers (no really).....Well, this is a bit of a stretch, but I do like his work, and I do intend to post about his schools - take it away, Andre! Agassi's Charter Schools