Archive | Education RSS feed for this section

US Supreme Court Ruling on Special Education

24 Jun

The US Supreme Court has ruled in the case of Forest Grove School District v T.A. The question was fairly simple: can a child be granted a private placement (outside of the state educational system) if that child doesn’t receive any services from the district?

The district in question argued that the Individuals with Disabilities in Education Act (IDEA) states that a placement could not be paid for (or in this case reimbursed as the parents were footing the bill at first) if:

“previously received special education or related services under the [school’s] authority.”

The family argued that the key provision of the IDEA is the concept of FAPE: the school system must provide a Free Appropriate Public Education. If the district has no appropriate placements, how can the parents be expected to place their child with the district?

The US Supreme Court sided with the parents:

Held: IDEA authorizes reimbursement for private special-education services when a public school fails to provide a FAPE and the private school placement is appropriate, regardless of whether the child previously received special-education services through the public school.


Kristina Chew has covered this already at Change.Org, as have others.

This is exactly the sort of topic we as a community and as a part of a greater disability community should be discussing. It is vitally important to those with children in the US. I hope that such decisions will have impact internationally as well.

ASAN Submits Amicus Brief to the US Supreme Court

2 Jun

I have a very high level of respect for the Autism Self Advocacy Network (ASAN). They one of the few autism groups (if not the only one) that actively works with other disability organizations.

Below is a statement from ASAN on the submission of an amicus (friend of the court) brief for a case before the U.S. Supreme Court.

The Autistic Self Advocacy Network, along with several other advocacy groups, has submitted an amicus brief to the United States Supreme Court in the case of Winkelman v. Parma City School District. The lawsuit was brought by the parents of an Autistic child who was not given the opportunity to continue receiving occupational therapy services in an Ohio school after the district had agreed that those services were necessary. The school district prepared an IEP stating only that a further assessment of the need for the services would be completed.

The Supreme Court is seeking to resolve a conflict among the Circuit Courts of Appeals, which have taken conflicting approaches to the question of whether a court’s analysis of the content of an IEP should consider only the written IEP or whether the court has discretion to consider other evidence as well.

Parents play a major role in developing an IEP, which is analogous to a contract with the school district specifying the educational services to be provided to the child. Related services such as occupational therapy also must be specified in the IEP pursuant to federal law as set forth in 20 U.S.C. § 1414(d)(1)(A)(4). School districts are prohibited from making unilateral decisions about a child’s IEP.

Consistent with the general rule that in contract law, evidence outside the written terms of the contract ordinarily is not admissible in court, three Courts of Appeals have ruled that only the written IEP should be considered in determining whether it is adequate. However, three other Courts of Appeals, including the court from which the Winkelman case was appealed, reached the opposite conclusion in deciding that an IEP lacking the required specific content could nevertheless be found valid based on consideration of other evidence.

The Autistic Self Advocacy Network is asking the Supreme Court to rule that when courts analyze the content of an IEP to determine its adequacy, only the written IEP should be considered. A school district should not be allowed to omit required content from a child’s IEP and then to assert later that it intended to supplement the IEP. Allowing districts to postpone decisions on the content of an IEP can lead to considerable delay in providing occupational therapy and other necessary services. The educational well-being of Autistic children and other students with disabilities is best served when they receive therapy without interruption or delay.

ASAN contact information:

Ari Ne’eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autisticadvocacy.org
732.763.5530

Autism Progresses in Parliament

28 May

A few weeks ago I attended the Northern Regional Forum of the National Autistic Society. The general feeling was that all those working around the private member’s bill on Autism then before Parliament had done a fantastic job. The government was talking to us and, more importantly, listening to us. The Bill of course would never become law but we could expect signficant concessions from the government in exchange for the Bill being dropped.

Instead the government proposed to delete the existing clauses in th eBill and replace them with amendments of its own covering

  • Transition Planning
  • Diagnosis
  • Identification and Assessment
  • Provision of Services
  • Training of Professionals
  • Local Authority/PCT Leadership

These amendments were acceptable to the Bill’s supporters and it will now progress through Parliament with government support. It is thus more closely focused on adult proivision. Provisions relating to children, including diagnosis, data collection and planning services will be enacted via regulations and guidance issued by the government a part of its Children and Young People’s Plan.

There is still a lot of work to be done. The government consultation that I wrote about last month is continuing and it is even more important now for people to respond.

Meanwhile, another private member’s bill from John Bercow on special educational needs that only came 19th out of 20 in a poll of MPs has failed to become law but the government has given assurances that it is making progress on meeting the commitments outlined in the Bill. The NAs was again involved in drafting the Bill and lobbying for its support.

the National Autism Society, which had worked with Bercow on the Bill, said it was satisfied that the Bill had achieved some success.

NAS policy manager Beth Reid said: “This Bill has helped to raise the profile of many important issues facing SEN children. It has put increased focus on making sure the right measures are in place to ensure they are support properly.”

However, Reid said more work was needed to bring down the high number of SEN children [whch contains a disproportionate number of autistic children] excluded from school, something Bercow’s Bill had sought to address.

This is important work. These are not grandiose schemes for combating autism, defeating autism or ramping up research efforts into possible causes and cures. But they are honest attempts to improve the lives of autistic children and adults. The NAS and its allies will continue to monitor the government response to ensure that its deeds do in fact match up to the commitments it has made in response to our campaigning.

California tries to win back “stay put”

13 Apr

Parents, of course, have the primary responsibility to provide for the needs of their children. But, children and adults with special needs often require more than their parents can provide, and that’s where government agencies are supposed to help out.

In California, the Regional Centers manage government sponsored services for those with exceptional needs up to age 3. At age 3, the school districts take over as the lead agency, with the RC’s taking a secondary role.

That is, of course, if all goes according to plan.

What if a school district is swamped or for any other reason isn’t prepared to take over? What happens to the child’s services?

Up until a couple of years ago, the child would stay in the same services until the school district and parents could work out the new plan. This was called “stay put”. A family could say, “Hey, look, you aren’t prepared to take on my kid’s services in the school, so we are going to ‘stay put’ with the services we have until this gets worked out”. During ‘stay put’, the district pays for the same services the RC was paying for until age 3.

Then came a change to IDEA, the Individuals with Disabilities in Education Act. Stay put was lost.

Yeah, parents can pay out of pocket while going through a dispute process. That is, parents with the money to do so. The dispute process, at best, take a few months.

This didn’t happen without a lot of activism to try to keep “stay put”. So far, it hasn’t reinstated “stay put”, but there is hope. State Assembly Bill AB1124 is in process.

There is a hearing on this with the Education Committee, this Wednesday (April 15).

This is a proposed California Law, but, let’s face it, setting the precedent that stay put needs to be in place could help people throughout the US. For Californians, now would be a good time to contact your assembly person about this. If your assembly person is on the Education Committee, now is a REALLY good time to contact him/her.

IACC Strategic Plan: Good for us?

6 Mar

By ‘us’ I mean my idea of what the neurodiversity community is.

The IACC released their strategic plan for the future direction of autism research yesterday. This is the basic plan that will form the basis of US (and probably world) autism research for the next 10-20 years. It sets out what it thinks the problems are, what should happen to address those problems and what specific research targets should be set to help address those problems.

So, is it good for us?

On one hand it is. In some places the document makes a clear distinction between the need to address the disabling issues that autism can bring and leaves aside cure language:

It is critical for research to identify the methods and approaches that can be used to prevent the challenges and disabilities of ASD.

Cool. Fine by me. And yet later on in that same paragraph:

Having sound research on the risk factors and the environmental triggers for ASD ultimately may allow us to achieve the goal of prevention: preventing the development of the disorder in some people at risk or reducing the degree of severity in those affected.

Hmmm. Possibly less good. I don’t even really quibble at the ‘reducing the degree of severity’ phrase but prevention? Even researchers as established and august as Simon Baron-Cohen and Tony Attwood have suggested this is not such a great idea. I also don’t believe its a great (or necessary) idea.

There’s lots of good talk about support and education for adults and the need to recognise that autism is not a childhood condition. Amazing that such talk is needed when adults clearly make up the larger percentage of the autism population.

I’m not sure this is a cure-based document. I do think its a define-autism-as-a-medical-condition document which is again not such an accurate idea.

And so we turn to the ‘v’ word. Vaccines are given fairly short shrift in the plan. I didn’t think so at first. When I read this paragraph I was dismayed:

To address public concerns regarding a possible vaccine/ASD link, it
will be important over the next year for the IACC to engage the
National Vaccine Advisory Committee (NVAC) in mutually informative
dialogues. The NVAC is a Federal advisory committee chartered to
advise and make recommendations regarding the National Vaccine
Program. Communication between the IACC and NVAC will permit each
group to be informed by the expertise of the other, enhance
coordination and foster more effective use of research resources on
topics of mutual interest. Examples of such topics include: studies of
the possible role of vaccines, vaccine components, and multiple
vaccine administration in ASD causation and severity through a variety
of approaches; and assessing the feasibility and design of an
epidemiological study to determine whether health outcomes, including
ASD, differ among populations with vaccinated, unvaccinated, and
alternatively vaccinated groups.

This is in section III under the heading ‘what needs to happen’. As I say at first I thought this was terrible. But then I read it again and noticed that what the plan is actually saying is that the IACC and NVAC should talk about these things. They’re not committing money to them.

Vaccines in fact feature nowhere as a short or long term objective in the whole plan and are mentioned again once as a possible research opportunity for people to keep an eye on any developing science.

Overall its a mixed bag. Good on vaccine stuff, good on recognition of need for services, good for recognition of adults but ambiguous at best on its intent for the idea of curing autism.

Stimulus package update

7 Feb

I knew I was running the risk of having my last post become obsolete immediately. Had I checked the news before I hit publish, I’d have seen that reports were out that the U.S. Senate had already passed their version of the bill, making it obsolete even before it was public.

OK, remember your civics classes? Or, if you are not a U.S. citizen, remember all those times that the U.S. political system seemed utterly confusing?

This is one of those times. (But, bear with me…or skip to the bottom: we need your help!)

First the House of Representatives passed their stimulus bill: H.R. 1. After they finished, they sent the bill to the Senate. The Senate, being a bunch of opinionated people, get to muck around with H.R. 1 and rewrite it. What just happened today is that the Senate passed their version of the Stimulus package. This is S.A. 98. In the process of rewriting, they added, oh, about 400 amendments to the bill. I’d love to tell you what they are, but they’ve come in so fast and furious that the government’s website hasn’t been able to catch up yet.

Many of the amendments say:

AMENDMENT PURPOSE: Purpose will be available when the amendment is proposed for consideration. See Congressional Record for text.

Here’s one that seemed good to me,

To provide an additional $6,500,000,000 to the National Institutes of Health for biomedical research.

Yep, $6.5B, with a B. That version got shot down…but this version (which appears the same in the short summary) got approved. Like I said, the U.S. Political system can be a little strange.

OK, it’s late. I don’t want to read through another 300 amendments. Especially when the amendment that has the cut to IDEA is buried in a quick summary like “to eliminate unnecessary spending”.

The word on the street (and probably somewhere on the Thomas.loc.gov website) is that the IDEA funding increase was cut down.

Does that mean the struggle is over? Hardly. It won’t be easy to get the funding level increased again, but keep in mind, the Senate and House versions of the bill are not the same. Before they send it to President Obama, they have to reconcile the two bills.

Or, as one news story puts it:

House Majority Leader Steny Hoyer said negotiators from the House and Senate would begin crafting a compromise bill on Monday, with the goal of sending legislation to President Barack Obama by the end of next week.

So, there is a chance for the the House to assert its version of IDEA funding.

In other words, now would be a good time to call, email or fax your member of congress or senators.

IDEA funding

7 Feb

One of the reasons I was hopeful that Mr. Obama would be elected presidency was his promise to fully fund the Individuals with Disabilities Education Act (IDEA). This is the law which mandates special education in the United States. The original promise is that the federal government would pay for 40% of the costs of special education.

It never happened. I don’t think it ever got to 20%.

That a country like the United States could make a promise to some of those in greatest need and then not live up to the promise is painful for me to admit as an American.

If you’ve been keeping up on the news lately, even outside the US, you probably know that Mr. Obama has a huge (nearly $1 trillion) economic stimulus plan proposed.

What you may not know is that IDEA funding is included in the stimulus plan.

House Resolution 1 includes the following language

For an additional amount for `Special Education’ for carrying out section 611 and part C of the Individuals with Disabilities Education Act (`IDEA’), $13,600,000,000: Provided, That $13,000,000,000 shall be available for section 611 of the IDEA, of which $6,000,000,000 shall become available on July 1, 2009, and remain available through September 30, 2010, and $7,000,000,000 shall become available on July 1, 2010, and remain available through September 30, 2011: Provided further, That $600,000,000 shall be available for part C of the IDEA, of which $300,000,000 shall become available on July 1, 2009, and remain available through September 30, 2010, and $300,000,000 shall become available on July 1, 2010, and remain available through September 30, 2011: Provided further, That by July 1, 2009, the Secretary of Education shall reserve the amount needed for grants under section 643(e) of the IDEA from funds available for obligation on July 1, 2009, with any remaining funds to be allocated in accordance with section 643(c) of the IDEA: Provided further, That by July 1, 2010, the Secretary shall reserve the amount needed for grants under section 643(e) of the IDEA from funds available for obligation on July 1, 2010, with any remaining funds to be allocated in accordance with section 643(c) of the IDEA: Provided further, That if every State, as defined by section 602(31) of the IDEA, reaches its maximum allocation under section 611(d)(3)(B)(iii) of the IDEA, and there are remaining funds, such funds shall be proportionally allocated to each State subject to the maximum amounts contained in section 611(a)(2) of the IDEA: Provided further, That the provisions of section 1106 of this Act shall not apply to this appropriation.

It’s not perfect, but it was a big step forward in funding special education.

But, as Kristina Chew (and others) have noted, there is a push to cut this proposed amount.

Now would be a good time to let your legislators–especially senators–know that fully funding IDEA is the right thing to do.

Take a look at this document–it’s actually a pain since I couldn’t search it. It lists the funding increases for school districts under the original stimulus plan. I picked California since the Los Angeles Unified school district is HUGE. Just to make this point–the stimulus plan would add $90,000,000 to their budget in 2009.

Look up your state and school district here.

This could make a huge difference.

Don’t let them cut this proposed funding. At least, let’s not go down without a fight.

Outcomes for autistic people

3 Oct

If I had a penny for everytime so know-nothing mercury zealot told me that by not chelating my autistic child (or HBOT/Lupron/Coconut kefir/Foot detox/clay bath/whatever) I was condemning xyr to a miserable life I could retire early.

My response has always been the same – ‘you’re full of what makes the grass grow green’.

I’m of the opinion that what makes the biggest difference to an autistic child’s educational prospects and hence their adult lives is how you teach them both formally (speech therapy etc) and informally (to be self-confident, to be told off when they are being naughty, to not feel that their stimmy behaviours are bad etc). So it was a pleasant surprise to come across this news article today.

She interviewed 41 adults, spending eight hours with the now 22- to 46-year-olds and their parents or spouses, assessing whether they would still be considered autistic, since the standard has changed. She tested their IQs and evaluated their quality of life.

McMahon and Farley were surprised to find half were doing better than what parents and teachers thought was possible. They had full- or part-time jobs. A few are married and have children. They have friends or acquaintances. One man is no longer considered autistic, having taught himself how to interact by watching movies and reading books.

I know what you’re thinking – these were adults with Aspergers syndrome, right? Well, no. These adults who were diagnosed with _autism_ between twenty to forty years ago (1968 – 1988) when the DSM II and then III would’ve been in effect.

DSM II (1968)
[autism was not mentioned; the word appears only under the following category]

295.8 Schizophrenia, childhood type

This category is for cases in which schizophrenic symptoms appear before puberty. The condition may be manifested by autistic, atypical and withdrawn behavior; failure to develop identity separate from the mother’s; and general unevenness, gross immaturity and inadequacy of development. These developmental defects may result in mental retardation, which should also be diagnosed.

DSM III (1980)

Diagnostic criteria for Infantile Autism

A. Onset before 30 months of age

B. Pervasive lack of responsiveness to other people (autism)

C. Gross deficits in language development

D. If speech is present, peculiar speech patterns such as immediate and delayed echolalia, metaphorical language, pronominal reversal.

E. Bizarre responses to various aspects of the environment, e.g., resistance to change, peculiar interest in or attachments to animate or inanimate objects.

F. Absence of delusions, hallucinations, loosening of associations, and incoherence as in Schizophrenia.

First things first. I severely doubt if _any_ of these adults received _any_ of what would be considered biomedical interventions today. Why? Simply because the idea that a vaccine could cause autism wasn’t around in 1968 – 1986. The youngest would’ve been twelve when Wakefield first started his foolishness.

So what we have, it would seem, is a 50% ‘recovery’ rate (based on what biomeddlers consider recovery) with the only basic interventions being education and time. One of the subjects is interviewed:

Pond says he felt alone and unaccepted growing up. Struggling to understand what was going on in grade school, he would blank out so intensely that adults worried he was having seizures. As a teen, he wished he could take a pill to make his disorder disappear.

Something else that wasn’t around so much in those days was a neurodiversity movement. If there had of been, maybe this poor guy would’ve been able to realise that people who would accept him were there. Its testament to his own strength and will (and the support of his parents no doubt) that he made it to where he is now.

But – there’s always a but – this same follow up found that 50% of these people:

But the other half live in group homes or with parents. They may have jobs but need supervision. They have few to no friends. One works as a janitor two hours a day and returns home to his rituals: watching movies and routinely checking for the mail.

Not ideal, but to be honest, its hardly terrible either. I very much look forward to the study being formally published. In the meantime, this is yet more evidence of the innate strengths autistic people have. Its much deeper and much more pronounced than anyone could ever have thought.

Really bad blogging by Sharyl Attkisson

9 Sep

As I noted before, My fax complaining that Ms. Attkisson missed the big story in the autism/vaccine discussion just about the same time she was posting on exactly that story (the Hornig MMR paper).

Ms Atkisson’s blog post is titled

New Study Disproves Vaccine/MMR/Autism Link

Wow. I didn’t expect to see that from Ms. Attkisson.

Below is the full extent of Ms. Attkisson’s contribution to the piece

There’s a new study in the Public Library of Science regarding vaccine measles and autism which purports to disprove a vaccine/MMR/autism link.

Also, researchers at ThoughtfulHouse wrote an opposing analysis:

She then posts the ThoughtfulHouse press release. No kidding, of the blog piece, 90% (an estimate on my part) of the words are written by someone else! And, not even the researchers involved.

Dang. Recently we have seen a lack of homework on the Dr. Offit conflict of interest story, and now this.

At least there was some effort put into the story on Dr. Offit.

What happened to the CBS I grew up with? I can’t see Walter Cronkite getting paid for “Richard Nixon has resigned in disgrace. Now, here is Mr. Nixon’s press release verbatim.”

Strategic Plan: when should I be concerned?

5 Sep

No, I’m not asking “when should I be concerned about the Strategic Plan”. Instead, I am taking parts of the Plan and posting them here. The full Plan is 34 pages long. Don’t let that slow you down! It really isn’t that long, and I found it a good read. But, it is hard to discuss the whole thing as a blog post.

Another point I see–there are six sections.  It may be tough to sit down at one time and write a response to all six.  If you think that may keep you from commenting, follow these posts and comment as you go.  It sounds like they would prefer you to write one single email, but I am all for anything that gives them more feedback–especially feedback that encourages using a strong scientific approach to selecting research projects.

With apologies to the people who wrote the Strategic Plan, I am going to only post the sections on “Research Opportunities” and “Short Term Objectives” and “Long Term Objectives”.  Read them and ask, “Is this how I want research dollars and research time spent?”.  If so, send them email and show support for the parts you like.  If not, email them and let them know your concerns.

With that intro, for the section, “When Should I be Concerned”, we have:

Research Opportunities

• ASD screening instruments and approaches for use in community settings to identify individuals who require diagnostic evaluation.

• Sensitive and efficient clinical diagnostic tools for diagnosing ASD in widely diverse populations, including underrepresented racial and ethnic groups, females, younger and older age groups.

• ASD measures that are easy to administer and that are sensitive to incremental changes in both core and associated ASD symptoms. Such measures can be used to help track the clinical course of individuals with ASD, monitor responses to interventions, and provide information about the broader autism phenotype.

• Detailed criteria for specific ASD sub-types in order to better describe the variations in symptoms and severity and study how these variations relate to underlying pathology, intervention strategies, and outcomes.

• ASD subpopulations and associated biobehavioral markers that provide early indication of ASD risk and opportunities for early intervention.

• Protocols for genetic testing in routine clinical practice in order to identify individuals at risk for ASD. Identification of individuals with genetic variations associated with ASD will facilitate intensive studies of ASD subpopulations with shared genetic risk factors to characterize common phenotypic and biological features.


Short-Term Objectives

• Develop, with existing tools, at least one efficient diagnostic instrument (e.g., briefer, less time intensive) that is valid in diverse populations for use in large-scale studies by 2011.

• Validate and improve the sensitivity and specificity of existing screening tools for detecting ASD through studies of the following community populations that are diverse in terms of age, socio-economic status, race, ethnicity and level of functioning by 2012.
o School aged children
o General population (vs. clinical population)

Long-Term Objectives

• Validate a panel of biomarkers that separately, or in combination with behavioral measures, accurately identify, before age 2, one or more subtypes of children at risk for developing ASD by 2014.

• Develop five measures of behavioral and/or biological heterogeneity in children or adults with ASD, beyond variation in intellectual disability, that clearly relate to etiology and risk, treatment response and/or outcome by 2015.

• Identify and develop measures to assess at least three continuous dimensions of ASD symptoms and severity that can be used to assess response to intervention for individuals with ASD across the lifespan by 2016.

• Effectively disseminate at least one valid and efficient diagnostic instrument (e.g., briefer, less time intensive) in general clinical practice by 2016

Again, ask yourself, “Is this how I want research dollars and research time spent?”. If so, send them email and show support for the parts you like. If not, email them and let them know your concerns.

← Older Entries
Newer Entries →