The phrase “doctors and patients as enemies” is what knocked me over in the reposted editorial by Milton Friedman. Is there anyone who doubts that very many, and certainly too many, parents and schools see themselves as adversaries in the special education process?

This mindset comes from a few places: scarcity (only a few districts would oppose services paid for by someone else), fear of responsibility (some districts and teachers don’t want to be accountable), and simple distrust and fear all around (parents initially have few skills to address autism’s challenges and look to experts, expecting solutions).

But we can probably all agree (except for the misanthropes (and I need a special word for those who dislike children and people with autism)) that this shouldn’t be how it is. Many parents I’ve met who are unhappy with a child’s placement almost uniformly started out expecting the school’s child study team to have the child’s best interests at heart, finding out later that the placement isn’t merely right or wrong, appropriate or not, but “negotiated.” And, beyond the simple disconnect with the statutory imperatives of IDEA, this concept sets up parents to be wracked with guilt because there is an implication that they could have always negotiated for “more” or “better” and at the same time forces parents into antagonistic relationships with districts because the school could almost certainly have “given more.”

By taking the placements for children from autism from a research-based model to one that is perceived to be driven by other factors clearly NOT based on what works for which children, this dynamic is created. And it flourishes festers because there’s no clear path out.

I gave a presentation last week on NJ autism insurance reform and discussed the possible silver lining for parents of the golden lining of insurance coverage for medically necessary ABA and related therapy for children and adults with autism: to me, the notion that insurance companies will be paying for ABA and other therapy mean that they might investigate ways to achieve similar outcomes for less, or better outcomes for the same money. If they can figure out how to know which drug to give to which patients, maybe they can focus their much larger wallets on the problems facing our community.

Jen talks about having discussions with parents, friends, relatives, teachers, etc. to explain the value of special education laws and our goals of educating kids who fall into these statutory groups.

Jen, it’s not just friends and acquaintances who ask strange questions with missing premises. The anguish some parents feel is simply incomprehensible for parents of typical kids. I have colleagues, some of whom are also lawyers, and who I know/believe to be generally kind people.

Yet they will repeat (more than once) this urban legend about parents wanting to have their children classified so that their kids will get extra services in school. I have yet to meet one of these parents, of course. I doubt that the benefits of “extra help” will ever overcome the stigma of “special ed” in any parent so focused on the outcome for her typical child.

If you don’t think “special ed” carries any stigma, search twitter for #specialed and see what pops up from people outside of advocates, lawyers, and parents. These folks had to type that in on purpose.

I gently remind them that while that is a hypothetical possibility, it’s easy enough to identify far too many children whose deficits are so great that it absolutely interferes with their daily existence. “Like my son,” I say.

Perhaps that’s one of many “next jobs” on this front: identify these parents so ignorant of the label that they will push NT kids into our wonderfully effective special education system. Because then I can send all my clients’ kids to that school district where special ed works so well.

Since I’ve been working on a similarly sized presentation to introduce my ideas on a comprehensive ASD curriculum planning & tracking tool, and since March 1-4 is Global Ignite Week, I wondered whether there are others in our community who would like to present a short presentation in this style.

There’s certainly more that can be done, but perhaps some focus might be an interesting way to get ideas on the table and excite each other about what we’re thinking in the background.

Please leave a comment if you’re interested in presenting or helping organize such an event. If there are only a few of us, perhaps we’ll piggyback on some NYC events that same week.

My fear is that even good people, friends and relatives, colleagues and classmates, will see this as a good idea, as a way to protect general education kids. My fear is that they won’t think about the tremendous needs of so many of our children, not just those on the spectrum but also those with other developmental disabilities, those who are deaf and blind, those with dramatic medical problems.

This isn’t “budget realignment;” this isn’t “creative accounting:” this is stealing the future from these kids. If our “educators” do this indirectly now, how long until they do it directly? Is it just a matter of time?

In some ways, it’s well-written. I like the bibliography. It’s all Nature, Science, NEJM, and Nature Genetics.

But to me, the real story is what’s not on the page. It’s too bad the author didn’t cite leaky gut papers from those journals or anything related to his “environmental” arguments/theories/guesses. That’s the real story – he can complain about these genetic studies because they’re published and methods are revealed and all the rest is an open book — including funding sources, conflicts of interest, and even access to many of the underlying samples. In some cases, the journals themselves require researchers to share all their data even if the lab wants to keep some of it private so they can look for more publishable findings.

Anecdotal evidence isn’t. Much of what is passed off to parents as “research” or “science” or “medicine” is so opaque or poorly structured that no one writes about it critically. It’s not deserving of criticism, and the practitioners who operate in this way don’t really complain about being shut out of mainstream scientific discourse. They haven’t even ante’d up the price of admission to the discussion.

I asked a research scientist once about whether there was any point to telling these other doctors and “researchers” (and I feel compelled to put it in quotes) about what constitutes a reviewable study. The response: all they have to do is read the journals and they can see what types of studies get published in terms of study design, replication, confirmatory evidence, and disclosures about ancillary matters (conflicts of interest and funding).

When you think about it like that, you see that the real reason the “alternative” and “biomedical” research is ignored or rejected is that it just doesn’t get presented in a way that looks like what society has spent hundreds of years refining as science and the scientific method.

Yes, it’s true that this post is aimed at discussions about the science of autism. But the same issues are there when it comes time to select specific interventions for remediating reading problems for children with learning disabilities. Some things work, and some don’t. If there isn’t research supporting the use of a particular intervention in the circumstance that a specific child presents (not just children in general or dyslexics or “most” autistic children) and if another reasonable intervention isn’t identified, then good advocacy demands that an IEP include a process for determining whether progress is being made and whether that progress is satisfactory.

The doctors involved have their own electronic records issues, and they’re almost certainly uncomfortable with anything that could make them responsible for inappropriate disclosures of information to non-medical providers, HIPAA releases notwithstanding.

The private therapists, schools, behaviorists, and psychologists that serve our families are the very definition of a fragmented market. They all practice in much the same field and serve many of the same people, but they are almost all tiny businesses by comparison to the commercial private sector. Sole proprietorships make up the overwhelming proportion of the whole; the typical private school for children with autism employs no more than 30-40 people to address the needs of 20 or so students (and that’s with 1 teacher per student taking up the major part of workforce).

Public schools and programs operate within the confines of bureaucracies that are [understandably] not focused on the whole-life management of autistic spectrum disorders, and that means that even when any records are kept electronically, there is no mechanism for connecting those records to any other system.

What would the world look like if everyone thought like me on this?

• Every child’s family would have access to a secure system to collect all data (medical, educational, therapy & treatment, social, performance, and testing) in one standard format system that would enable parents to control access by appropriate persons to appropriate information. This top-level control returns the power to parents to manage the care of their children and allows them to more easily identify a high-powered concierge/case management “officer” to oversee every aspect of their child’s development.
• Every service provider would have the ability to review and analyze relevant data, whether medical, treatment, or educational. Electronic data can be analyzed automatically, as with management by exception, meaning that an ABA program could trigger alerts for a behaviorist when no progress is made over three teaching sessions, or a neurologist could see the effects of different medication levels on classroom activities. [Note to readers -- I will have to find a link to the very interesting talk I observied at the 2009 Autism NJ conference.]
• If suitable data gathering mechanisms/processes/tools beyond paper and pencil could be efficiently deployed, they could be integrated with curriculum management tools to save time and money by increasing therapist/teacher efficiency, improve program management by allowing for “pre-programming” by behaviorists, and allow for further deep analysis to determine if there are pathways of performance that provide reliable signals for the future or the need for other interventions.

What would be important to you in a record-keeping system? Would you feel comfortable if you as the parent had absolute control over who could see what? Do you think school districts would provide you your child’s data in a compatible format?

You’ve already learned that early intensive behavioral intervention is the best treatment for your child.

Now, without giving you time to address the personal, emotional, philosophical, and financial problems that come into your lives after those first two critical steps, you start hearing about this IEP thing. Very quickly, reading the Mosaic list or any of a dozen message boards, including [especially?] those populated by lawyers and advocates, you’d think that you’d uncovered the real death panels in our health care system.

But IEP meetings don’t have to be as paralysis-inducing as people often make them out to be. They are both more, and less, than you think. With a little bit of knowledge, you can dramatically improve your entrée into this next phase of special education. Learning to understand the IEP process is important because this system governs special education services for children from ages 3 to 21. And believe me, even if your child fully recovers and is out of the system in five years, you will have friends and programs and therapists that you will want to support throughout their experiences with the system.

So, how do you learn about IEPs?

There are three sources, and they are not equal: authoritative, reliable, anecdotal.

Authoritative – the actual statutes and regulations that govern special education at the federal and state levels, as well as the court cases interpreting them.

Reliable – state and “big agency” pamphlets, booklets, and handouts. Books by well-regarded and experienced lawyers.

Anecdotal – everything on Mosaic and half the posts on COPAA; books on IEPs by unknown lawyers and non-lawyers.

(You should realize by now that this mirrors how you learn about autism.)

This introduction isn’t a tutorial on the text of IDEA or an explanation of when federal law trumps state law; that’s the equivalent of reading a PowerPoint slide to you: it’ll waste your time, bore me, and annoy you. Let’s focus instead on two things: the principles that guide the overall IEP process and some tips that will help you start this process with as much control as you can muster.

Principles

1. The IEP process is divided into four stages. It is important to understand what you and the rest of the IEP team have, and have not, agreed on so you know what type of problem you might have and what your options are.
   • Identification – does this child have a potential special education need?
   • Eligibility – should this child be further evaluated to determine needs?
   • Evaluation – what are this child’s deficits and what is required to remediate them?
   • Placement – what individualized mixture of services is necessary to give the child a “free appropriate public education?”
2. The “IEP team” is, and isn’t, a team. It’s a team in the sense that you have specific information and  procedural rights that are designed to protect your meaningful involvement and your voice at the table. It’s not a team in the  sense that neither you nor, more importantly, the school district have veto power. It’s more like a game of poker during the betting rounds where part of your job is to make sure that you create clear signals along the way that let each party know when it’s their turn to raise or fold.
3. Unfortunately, there is no end once you are in the IEP world. There’s no safe zone in which you can KNOW that things won’t change. The silver lining is that you’re never truly stuck with services that you may have agreed to at one point in the past. In other words, the district can always call an IEP meeting and propose to reduce services; you can always call a meeting and propose to increase services. It’s not exactly an even bargain, but it allows for flexibility as circumstances change.
   • If you go far into the dispute process, then you can get some of this certainty for some period of time.
   • Many districts try to schedule all IEPs around a certain time, such as May so that they can ostensibly more accurately assess the need for ESY (extended school year) services. I think that parents should regularly plan for reviewing the child’s progress after just a few weeks in September, particularly with a new placement. This timing allows parents to call for a meeting in October if the placement needs fine-tuning or more.

Tips

1. Your goal is to have a signed IEP in hand, meaning you’re reasonably happy, before your child’s third birthday.
   • My son started school on his birthday, but we were pushing and rushed. We were essentially ill-prepared because we didn’t start soon enough because our early intervention coordinator completely failed to notify the district. Of course, that district effectively ignored my wife’s midsummer calls only to complain in September that there “wasn’t time” to be ready by his third birthday. And now that doesn’t have to be you.
2. If you are in early intervention now, you should already be talking to your service coordinator about a transition plan and talking to your school district.
3. Don’t wait until the EI person tells you it’s “okay” to start talking to the district. Ask [her] to send your child’s information to the school unless you are really, really sure you’re moving. And even then, there’s no harm in being a little over-prepared.
4. If you’re not in early intervention, because you’re in an outreach program of some kind or you decided to arrange your own services rather than pay EI’s cost share (NJ-specific; NY is different), you should start talking to the district now. Today.
5. Write, write, write. (And keep copies.)
   • Write things down so that you remember them. Consider a sturdy dedicated journal that you can get at Border’s on the sale rack for under $5.
   • Write [nice] letters to the school regularly so that they get used to confirming what you discussed and agreed on. (And keep copies.)
   • Writing regularly means that no one will automatically raise the alarm, rightly or wrongly, when they get a letter from you. (And keep copies.) Good communication builds a stronger working relationship that can’t hurt anyone.
   • If you email, save it in a useful way (use a free print-to-pdf utility and save it in a special folder for your child’s papers). (That’s a way to keep copies.)
6. SMART goals – SMART stands for:
   • Specific
   • Measurable
   • Active
   • Realistic
   • Timed

   The acronym helps you develop goals and objectives for the IEP that will be useful. Poorly written goals are effectively useless – they don’t signal what should be done and they’re unenforceable as a practical matter.

   • Wrightslaw has a number of useful pages (PDF) on SMART goals.
   • I have written a post on SMART goals.
   • Learn what your role in the process is. Unless you have some special domain expertise, don’t *worry* about thinking you have to pick the actual goals for your child (that shouldn’t be your job). Instead, learn how to ask questions to find if the goals presented are the right ones. Learn how to read and rewrite them so that they are useful to have in your child’s IEP. That’s a skill any parent can learn.

Final thoughts

Find and share resources. You will meet a huge number of providers over the next few years, from doctors to dentists to lawyers to therapists to psychologists to schools to external classes and on and on. Find people you like, recommend them to others, and seek their advice when needed.

I’m working on a project to help parents do exactly those things, including interviews from various professionals so that they can teach us as parents when we should be calling them.

It’s not as simple “call the doctor if the fever is 103; go to the hospital at 104; call 911 at 105.”

If you don’t know what kind of person will address your child’s problem, ask other parents, ask your child’s case manager at the district, and ask the most senior behaviorist who supervises your child’s program.

Good luck. You’re not alone.

Notes on Resources

1. Evaluating treatments – ASAT has a description of various treatments and the research basis supporting each one.
2. Philosophical issues regarding autism treatment – self-advocacy groups such as ASAN have been vocal about these issues. It’s not as straightforward as you might think; see, e.g., this parent’s viewpoint.
3. Get an introduction to insurance coverage (not specifically dealing with pending NJ autism insurance legislation) and the insurance claims process from Christina Peck’sbook.
4. Mosaic) is a Yahoo Groups based mailing list, ostensibly for parents of 5 yo+ children on the autistic spectrum in NJ. In practice, the group is populated by a wide range of very helpful parents, with years of experience in almost every conceivable issue. Both DAN  & non-DAN folks abound, and I have not seen any judgmental comments across hundreds and hundreds of postings.
5. COPAA, the Council of Parent Attorneys and Advocates, focuses on the legal/administrative segment of the issues parents face. COPAA maintains a strictly members-only mailing list that helps parents, advocates, and attorneys identify, investigate, evaluate, and present claims and cases on behalf of those with disabilities. NB: COPAA is by no means autism-only and includes discussions about discrimination as well as special education.

In a rare public appearance made even more rare because it’s parent-driven, Catherine Maurice will be honored by REED Academy at their 7th Annual Fall Night Out. The theme this year is Denim & Diamonds [invitation - PDF],  bringing a more festive atmosphere to the gala.

What’s it going to be like?

In addition to a sit-down dinner, full open bar, live music, beautiful view, complimentary valet parking, a coveted guest speaker, cool live jazz, and the opportunity to go out in your best jeans and have a good time, we have numerous exclusive auction items that you can’t just buy anywhere.

Dance in a Broadway show.  Take a break from the cold this winter in the Bahamas.  Surprise the family with tickets to the Nickelodeon Kids’ Choice Awards.  Walk the Red Carpet and attend a private party at a New York premiere of Wall Street 2.  It’ll all be there!

(I’ll post a sampling of the auction items at the bottom of this post.)

When & where is it?

The event is on Saturday night, November 14th, from 7 pm to 11 pm at the Newark Club in Newark, NJ.

How can I register or donate?

• You can register online at www.reedacademy.org.
• Here is a direct link to the registration page.
  

  If you are unable to attend, you can use the same registration page — just put in 0 tickets and your donation amount as an “additional donation.”

• Mail in the response card to REED Academy, ATTN: Denim and Diamonds, 85 Summit Avenue, Garfield, NJ 07026.

Tell me about these auction items.

Our amazing auction items include:

• 2 tickets plus a WALK-ON! role (amounts to a DANCE-ON, really) as a member of the Tribe and a backstage pass to Hair, The Musical on Broadway
• 4 tickets to Nickelodeon Kids’ Choice Awards in L.A.
• 2 tickets Wall Street 2 Premiere in NYC (including red-carpet walk, screening, and after-party)
  • <NYT Article
• 2 tickets to Jerry Seinfeld/Bruce Springsteen Autism Speaks Benefit at
  Carnegie Hall, November 17th
• 2 tickets to March Madness Final 4
• 4 days/3 nights at February Point Resort Estates, Great Exuma in a 3 bedroom luxury oceanfront villa
• 7 days/6 nights in Bimini Resort & Casino, Bahamas in a 2 bedroom suite
• Golf at exclusive private clubs, including Trump National and Ridgewood Country Club
• 4 days/3 nights, Marriott Mountainside, Park City, Utah at the base lodge, ski in/ski out
• 10 tickets to NJ Devils game (lower level seating)
• Disney vacation package for 4, including airfare, hotel and park passes
• 24-hour babysitting/respite care with REED staff!

Plus electronics, jewelry, overnight hotel stays in NYC, sporting event tickets (Yankees in the YES Suite, Knicks courtside, great Jets seats), the hottest show tickets (the newest Broadway shows, VIP passes to the Jon Stewart Show, etc.), fabulous NY and NJ restaurant certificates, designer goods, great holiday gifts for the kids, valuable autographed sports memorabilia (NASCAR helmet signed by all racers at Daytona 500!), and much, much more!

Anything else?

And of course, you get to take advantage of the opportunity to make a difference in the lives of children with autism, who work so hard every day to learn so many skills that come naturally to most. Meet the parents and staff of REED, and learn about science-based intervention for autism. Here’s REED’s most recent newsletter (PDF, 5mb). We hope to see you there. Thank you for your support! ]]> http://www.asdworld.com/2009/10/27/special-event-honoring-catherine-maurice/feed/ 1 http://www.asdworld.com/2009/10/13/project-open-source-school-for-autistic-children/ http://www.asdworld.com/2009/10/13/project-open-source-school-for-autistic-children/#comments Tue, 13 Oct 2009 13:16:04 +0000 Rick Colosimo http://www.asdworld.com/?p=455 I refer to this as 30seats.com, wth a focusing on creating one classroom at a time to serve our entire community of new children with ASDs.

Mission:

A program that would collect, create, and curate tools, information, and content to address the physical, program, and regulatory requirements to found a school-centered program for children with autistic spectrum disorders.

Need:

The CDC has updated long-standing incidence rates that had been widely quoted as 1:150 children, 1:94 boys. Now these numbers stand at about 1:100 children, with 1:60 boys nationally. With 115000 births in NJ, each year approximately 1150 children will be diagnosed in this state alone. (California has similar rates applied to a much larger population.) When we first visited one of the seven well-known ABA schools in NJ, with a waiting list in the hundreds, the director said to the assembled parents, and not jokingly, that rather than hope for a spot off the waiting list, they might consider starting a school, and that the director had lists of interested parents. Existing high quality programs may have as many as two openings each year, for a total of 14 spots for the 1150 children on the autistic spectrum. This availability is woefully inadequate, and it has been hard for public programs to maintain the same levels of quality in their instruction, as evidenced by their scarcity. Many don’t succeed. Even now, it’s harder in NJ to start a school from scratch because of “politics.”

Value:

Early intensive behavioral intervention, commonly referred to as ABA/Applied Behavior Analysis, is generally regarded as the only intervention that is supported by peer-reviewed research. A crowd-sourced set of materials, curated by experienced professionals, can greatly improve the efficiency for parent groups, and even school districts, looking to create new effective programs. Forming a new school currently takes 1-2 years before students can even begin instruction, let alone be fully integrated into a program. Almost any improvement in this process will create vast advances for children across the spectrum. There are economies of scale to be gained from experience even in specific jurisdictions, and other issues, such as curriculum, should readily be shared and improved upon across a number of schools. This application of technology to social problems turns a training video for 20 teachers into one for 2000.

Why 30seats?

The NYC/NJ area is conveniently the home to long-standing schools (and related researchers) for autistic children, including Alpine Learning Group and Princeton Child Development Institute. It is also home to more recently founded schools such as REED Academy, which is further in the final stages of a capital campaign to build a permanent facility. This richness of institutional experience, ongoing operations, and personal resources make the area a ideal location in which to start the 30seats project.

Will people & institutions contribute?

These nonprofit institutions share information currently on a variety of formal and informal bases, but there is tension about sharing materials that could be used by for-profit entities. However, the rise of Creative Commons-based licensing and use structures makes this less of a problem; organizations and people are more attuned to the issues. I think that parents and therapists involved in home programs will definitely be happy to share and share alike; there’s little doubt that a crowd-sourced library can have far more richness than even the best dedicated programs, especially when the programs are linked to supporting materials (such as having 30 different pictures of police officers rather than 5 for a community helpers program).

Will people & institutions use the materials?

The existing stakeholder groups already share a wide variety of materials. When REED Academy was formed, they received significant advice from existing schools. Even now, during their capital campaign & building project, they are accessing institutional knowledge from other schools.

Why must we do this?

The philosophical beliefs that support this idea are that well-constructed programs and materials are a necessary, but insufficient, prerequisite to learning. Without quality behavioral intervention, programs that are good on paper will not lead to optimal outcomes. We should, as a community, eliminate the easy problems so that our professionals can focus on the hard problems: teaching and training therapists to make moment-to-moment decisions about what will motivate a particular learner to actively engage in learning and positive social interactions.

What can I do to help?

This project needs volunteers with organizational, programming, XML, curriculum design, and ABA skills. The initial piece that seems most useful to all stakeholders and imposes no requirements but creates real standards is an XML-based, open-source curriculum model, a Dewey Decimal system for autism. Using an open-source standard, everyone from parents making their own materials to web-based materials tools and exchanges to online ABA training and curriculum to ABA-based schools for autism can use a similar backdrop, a common language to share materials, programs, and eventually data that can be used to create learning benchmarks to allow for greater feedback into the 1:1 educational process.

This is the only goal: help more kids, more quickly, more effectively, and more efficiently.

For those who are interested, I would probably define this as attempted murder. It’s absolutely reckless behavior that is so depraved as to lead me to believe that she deserves that level of punishment.
1. She knew he had an allergy.
2. She deliberately fed him the allergen.
3. Peanuts are commonly known to cause breathing problems in allergic people.

If this were my child, I would be in the DA’s office on this one without question.

Interestingly, it brings up a legal issue I investigated during my summer internship at the Tompkins County District Attorney’s office in Ithaca, NY. In Ithaca, there is a town attorney/prosecutor that brings mostly quality of life charges before the town court. The issue was whether New York law prevents anyone other than the elected District Attorney from prosecuting people.

It was interesting because there used to be situations where private lawyers could bring criminal prosecutions. The practice died out because (a) most often this happened when there was individual bias against the accused, rather than a disinterested prosecutor who is ethically required to seek justice rather than convictions alone; and (b) the establishment of district attorneys throughout the state created a process for redressing public grievances and a process for changing the person in that job. (I’ll look for the article on the issue and scan and post it.)