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My IMFAR poster

1 Jun

I was fortunate enough to attend IMFAR this year on an Autism Science Foundation stakeholder travel grant. This is the second year of the program, and I hope that they continue it. Given that, I thought it would be valuable to write about my day-to-day experiences: Looking back at IMFAR from an ASF Stakeholder Travel Grant Awardee

I have to admit, my experiences were probably out of the ordinary for a stakeholder travel grantee. I hope that many or even most will be people who are not familiar with scientific conferences (I have attended several over the past 20 years). I do hope that more bloggers attend and report back, though, so experiences with the press conference could be of value.

One aspect of my IMFAR visit that I didn’t discuss in detail on the ASF blog was that of presenting a poster. My topic was:

Parent Reported Status and Expectations for Their Autistic Student Children:
An Analysis of the 2007 National Household Education Survey

Here’s the abstract:

Background: National surveys provide a good source of information on autistic populations within the United States. The 2007 National Survey for Child Health was used to estimate autism prevalence (Kogan 2009), as well as to make comparisons of such family factors as the divorce rate (Freedman 2010). A similar survey, the National Household Education Surveys Program (NHES), is an opportunity to explore comparisons between parent-reported factors involving the lives and education of autistic and non-autistic students.

1. Compare educational placements and percieved educational abilities between children with (a) parent-reported autism spectrum disorders (ASD) and (b) children in the general population.

2. Explore parent expectations for the future of their ASD student.

Methods: Data used for this study were taken from the National Household Education Surveys Program (NHES 2007). NHES had 10,682 total respondents, representing students ages 3 to 20 years. 127 parents identified their child as having autism and an additional 37 identified their child as having pervasive developmental disorder.

Parent responses for this group (164 total, or about 1 in 65) were compared to those of the parent responses within the general survey population.

Results: 75% of students with parent-reported ASD have an Individualized Education Plan. Parents reported that their ASD students are more likely to have repeated a grade (23% ASD vs. 9% without) or be home schooled (5.5% vs. 2.9%) or be in a program that does not assign letter grades (37% vs. 22%). ASD students were reported as less likely to be in private school (9.6% vs. 13.4%) and to have moved in order to attend a specific school (17.7% vs. 21.6%). Parents are generally satisfied with their child’s school (82.2% rated somewhat or very satisfied), but less so than for non-autistic students (90.7%). Of those children who receive letter grades, the number of ASD students getting “mostly A’s” or “mostly B’s” is high (79.6%), but less than the general population (84.1%). Parents of students in middle school or above were asked about their future expectations. The fraction of ASD students whose parents’ expectation were that their child would receive less than a high school diploma is much higher than for the general population (6.3% vs. 0.6%). However, by far the majority of parents expect their autistic student to receive a high school diploma, with most expecting at least some vocational school or college to follow. Most parents in the general population expect that their child would achieve a 4-year or graduate degree (72.7%). While the parental expectations for ASD students to obtain a bachelor or higher degree is much lower (28%), this is still a notable fraction of the autistic population.

Conclusions: Parents report that their ASD students lag behind the general student population in academic performance. Parent report high satisfaction with their schools, but at a lower level than the general population. Many parents of ASD students report high expectations for their ASD students. Services research should consider how to support individuals with ASD with a broad spectrum of abilities and expectations.

Here’s the actual poster:

Imfar poster 2

If you are unfamiliar with a poster presentation, here’s the short version: You take your study and write it up on a 3′ x 4′ piece of paper. You stand in front of the poster and discuss it with the people who are interested.

I was very lucky in that I was right by one of the doors, so a lot of traffic came my way. That traffic included a few people who knew me from my blogging here. One reader came up and said “Hi Sullivan!”. A group from Kennedy Krieger stopped by and told me they wanted to take a picture of the poster to show their colleague–who I was citing in my work. I don’t think they are used to people saying, “You guys from Kennedy Kreiger rock!”, but they got it from me. I spoke with a researcher I know who worked under Ami Klin (formerly of Yale, now at Emery), whom I got to meet there too.

I was scheduled for the 10am time slot on Friday. This means I had to duck out early from Eric Courchesne’s keynote talk. I spoke with him later and he asked me about his talk. I told him it was very good and he responded with the killer question: what did I think of the last 15 minutes? I had to admit that I was standing in front of my poster then and missed his conclusion. To which he responded (with a bit of a mischievous grin, if I may say): you missed the best part! as he disappeared through a door.

I was scheduled for 1 hour. Posters can be a bit tedious when you stand there waiting for someone to talk with. I was lucky in that I went pretty solid for 2 hours.

A poster presenter needs to have the 1 minute “walk through” of the study. Mine was basically this: A lot of work has been focused on the National Survey of Children’s Health (NSCH). This is the study which formed the basis of one of the “autism prevalence is 1%” last year. There didn’t seem to be much focus on the educational survey which I presented, and I was there to make it known that there was this other data source. I didn’t dwell too much on the prevalence (1 in 65) or the fact that the prevalence was basically flat with age (Figure 1). What I found interesting was the fact that there is a very wide range of parental reports of abilities, difficulties and expectations for their kids. Yes, by every measure shown, autistic students are more likely to be in ungraded classrooms, get lower grades, have reports of behavior problems and the like. But a notable fraction are being parent-reported as getting “A’s”. Most parents expect their children to graduate high school (over 90%) and many parents expect some college or even graduate school. Those last questions were only asked of parents of children in middle school and above, so they had some basis to make the predictions.

I pointed out that there is no way to see how realistic the parent’s expectations were (and that there was a far more rigorous study being presented at IMFAR on the transition out of school for autistic students–that of Paul Shattuck’s group in St. Louis–and that expectations exceed reality). The first person to look at my poster noted that 30% of parents of children overall (the general population) were expecting their kids to go to graduate school, which shows that all parents are proud of and optimistic about their children.

There was a wonderful presentation on the poster next to mine by a team from Georgia Tech. I hope to include that team’s work in a later post.

I am very grateful that IMFAR accepted my abstract. I went in with the idea that my poster might be the least interesting study presented. In the end, if I do say so myself, I held my own. Sure, it’s not earth shattering research. But there were interesting points. For me it was a great experience, even if it meant a flashback to my grad school days of standing in front of a poster.

That’s not for our kids

28 Apr

A recent Guardian Roundtable touched on an interesting subject for those of us who are responsible for children with learning difficulties. The article was written, sourced and published in the UK but I believe it applies everywhere in the world where there are children with learning difficulties.

Just 6.4% of people with learning disabilities are in paid employment and that stark statistic – and the shocking waste of financial (and human) resources behind it – formed the backdrop for a recent Guardian roundtable discussion.

This issue has its root, I believe, in the way we are led to think about our children from birth:

When it comes to setting expectations for a child with learning disabilities, things can start to go wrong the moment they are born. The roundtable heard how health staff use their “breaking bad news” training to counsel parents, leaving them with the impression that there’s not much incentive to look forward to the future.

I remember the day we received the news that our child was autistic with profound learning difficulties. There were 3 calm staff members and a box of tissues on the table. By the time we left, the tissues had been used – and although the staff were gentle, kind and wonderful people who clearly were fond of our child – they too fell into that trap of ‘breaking bad news’ mode. A mode that, by its very tenor, fulfills the expectation of _being_ bad news.

The truth is, in my opinion, that with a little effort from health care agencies we can move from:

staff at one special school who, when the issue of employment was raised, replied: “That’s not for our kids.”

to a de facto position as espoused by agencies like Remploy who are the UK’s leading provider of employment services to people with disabilities.

But we’re not anywhere near that yet. In my own experience too many parents of people with special needs are content to wallow in the comfort of ‘putting it off’ – their children are still young. But consider this – we are far longer a time adults than we are children. Our children need to learn how to function in the world. This won’t be brought about by sham cures and ideaslistic fights against a strawman army. Neither will it be brought about by those who insist on misrepresenting the nature of what autism is to all rather than some.

One speaker summed up the fundamental question underpinning the whole debate: “Do we believe that people with learning disabilities and their families are worth it?”

Are they worth the upheaval and political effort it would take to transform a system that often fails them when it come to finding work?

In any society that claims to be fair, children with learning disabilities surely deserve the same life chances as other young people, the roundtable heard. They should be encouraged to have ambition

Federal government denies Oregon waiver on special education cuts

15 Apr

In the US the Federal Government pays a part of the costs of special education. They are committed to pay 40%, but typically have spent about 17%. If a state reduces special education spending, the federal matching funds are also reduced. That is, unless the state is granted a waiver. So far the federal government has been granting the states waivers as they ask for them. In other words, the states cut special ed funding, but the government doesn’t cut the amount they pay in.

That’s what’s happened until now. Oregon has been denied a waiver. In Feds say Oregon must boost special education funding or face sanctions, points out:

The U.S. Department of Education has denied Oregon’s request to reduce special education funding in light of budget cuts and will cut more than $15 million federal funding to schools if the state doesn’t reverse course.

States lose federal special education money if they lower their contribution to those programs without a waiver. Oregon Department of Education officials sought the federal waiver, saying the state faced declining revenue projections throughout the summer, forcing the department to reduce the amount of money supporting special education programs.

But the federal government didn’t see things the same way. U.S. Department of Education officials say Oregon needs to tap into its reserves and return special education funding to 2009-10 levels. If it doesn’t, the federal government will reduce its contribution to the state by $15.7 million for the 2011-12 school year – a direct reduction to local school district budgets.

I am very mixed on this. Yes, I think the federal government should try to push states to maintain special ed funding. Unfortunately, this could cost an additional $15.7M to the state’s special education budget.

Alabama given permission to cut special education funding

13 Apr

We’ve discussed it before: some states are starting to ask for waivers from the federal government to allow for reductions in special education funding. From Federal goverment to let Alabama cut spending for special education. Here’s the first few paragraphs:

WASHINGTON — Ala­bama is one of a handful of states given permission to cut spending on special ed­ucation this school year, a rare concession from Wash­ington for states facing se­vere shortfalls in their state budgets.

State education officials had asked to spend $9.2 mil­lion less on education pro­grams for disabled children than last year, a 1.45 percent drop.

In a response letter dated Thursday, federal education officials said they were will­ing to waive the insulation that special education pro­grams normally have from cutbacks because the reduc­tion was a fraction of the cuts made to the rest of the education budget.

Alabama reduced its over­all spending on education by 8.41 percent in the 2010-11 fiscal year — 8.46 percent in elementary and secondary education.

The federal governement will give the same amount to Alabama for special education:

If the waiver had been rejected, Washington would have reduced the amount of money it sends to Alabama for special education next year by $9.2 million. Washington said it expects Alabama to spend about $635 million on special education in the 2011-12 year, which would have been the budget before the waiver was granted.

Seeking Organizations & Informal Groups to Sign-on: Support IDEA Fairness Restoration Act

24 Mar

From Wrightslaw: Seeking Organizations & Informal Groups to Sign-on: Support IDEA Fairness Restoration Act.

The Council of Parent Attorneys and Advocate’s (COPAA) and the Autism National Committee (AutCom) have drafted a letter to present to legislators in support of allowing families to be reimbursed for expert witness fees when they prevail in due process hearings.

They are looking for sign-ons to the letter from formal and informal groups:

Organizational sign-ons are welcome from disability organizations and groups, formal or informal; informal networks of attorneys and advocates and others; parent support groups; health, civil rights, and other related organizations or groups; nonprofit organizations, public interest law firms and organizations, associations, and any other supportive groups.

Here is the letter:

We, the undersigned organizations, urge Congress to pass the IDEA Fairness Restoration Act, S.613 and H.R. 1208. The bill would overturn the Supreme Court decision in Arlington Central School District v. Murphy by restoring Congress’ original intent in enacting the Handicapped Children’s Protection Act of 1986 that parents who prevail in administrative hearings and court actions be allowed to recover expert witness fees as well as attorneys’ fees.

Under the IDEA, schools are required to provide a free appropriate public education (FAPE) to children with disabilities. Congress recognized long ago that there will be times when parents and school districts differ as to what constitutes FAPE and that in those situations parents should be allowed to seek a hearing before an impartial administrative hearing officer. In those hearings parents must provide testimony from such expert witnesses as psychologists, doctors, therapists, and educational experts to prove that FAPE was not provided to their children. However, nearly 36% of children with disabilities live in families earning less than $25,000 a year; over two-thirds in families earn less than $50,000 a year. For both low and middle income parents, the right to due process is real only if the fees of these experts are shifted when they prevail.

Prevailing plaintiffs in ADA, Title VII, and other civil rights have the statutory right to recover expert witness fees. We ask Congress to take action to restore its original intent and provide this same right to parents who prevail in IDEA cases.

Nor would this bill be burdensome for school districts. Parents proceed to litigation only as a last resort. In 2003, the GAO reported that there were only 5 hearings per 10,000 special education students. Only parents who prevail could recover fees; parents who do not prevail could not.

We ask Congress to pass the IDEA Fairness Restoration Act, S. 613 and H.R. 1208. Restoring Congress’ original intent the Handicapped Children’s Protection Act is important to ensure that parents are not deprived of their right to due process because they cannot afford expert witnesses. Thank you very much for your support.

Please contact either of us if you have questions. Thank you very much for your support.

Jessica Butler, Congressional Affairs Coordinator, Autism National Committee (
Bob Berlow, Co-chair, COPAA Government Relations Committee (

Please don’t hesitate to SHARE THIS with others.

To sign-on you must email your name, the name of your organization or group, and your city, state, zip code, and email address to – (Jessica Butler, Congressional Affairs Coordinator, Autism National Committee)

Congress considers whether parents should be reimbursed for expert witnesses in special ed cases

23 Mar

Families in dispute with their school districts over special education have the right to file for a due process hearing. Most of the time, these disputes are settled in mediation. A few cases go to hearing. These hearings are expensive for both sides, and a major cost to families can result from expert witnesses: people like psychologists or speech/language pathologists who testify to the unique needs of the child in question.

In 2006 the Supreme Court of the United States heard a case on whether school districts were required to reimburse families for expert witnesses. In Arlington v. Murphy the Court ruled that families do not have the right to be reimbursed. This is true even if the family prevails. Or, to put it another way, if a district fails to meet the needs of a child and parents are forced to not only file due process but take the issue to hearing, the parents must pay the expert witnesses–even though the district was at fault.

Congress has recently introduced bills in both he House and Senate to reinstate expert witness fee reimbursement as The IDEA Fairness Restoration Act. Previous attempts to reinstate expert fee reimbursements have failed, but this is the first time the bill has been introduced in the House and Senate.

More on this at WrightsLaw and DisabilityScoop.

States request waivers to cut special education funding

22 Mar

From On Special Education at Education Week: Another State Requests Waiver to Cut Special Ed Spending.

It’s official: This month, Oregon asked the U.S. Department of Education to allow it to cut about $15.7 million from its special education budget and not lose the same amount of federal money for students with disabilities—a double hit

The US Federal Government assists schools with special education by contributing about 17% of the costs. If a state were to reduce special education funding, as Oregon is planning, the Federal Government’s contribution would also go down. Say that Oregon cuts $15.7M in special education funding. They would also lose about $2.7M in Federal support. Oregon has asked that they be allowed to cut special ed funding and still keep the Federal contribution.

Follow the link that On Special Education supplied, and you will see the waiver applications from Kansas, Iowa, South Carolina, West Virginia, New Jersey, Alabama, and Oregon.

Beyond the “double financial hit” aspect, the law requires states to maintain a constant or increasing level of Special Education funding. From one of the letters granting a waiver:

Under 20 U.S.C. § 1412(a)(18)(A) and 34 C.F.R. § 300.163(a), a State must not reduce the amount of State financial support for special education and related services for children with disabilities, or made available because of the excess costs of educating those children, below the amount of that support for the preceding fiscal year.

The Oregon waiver application starts with this paragraph:

The State of Oregon respectfully requests that OSEP grant a waiver of the requirement that Oregon maintain state financial support for special education and related services for the 2010-11 school year. This authority to grant the requested waiver is provided by statute and regulation [20 U.S.C. §1412(a)(18)(C); 34 C.F.R. § 300.163(c)(1)]. It would be equitable to grant this waiver because of the “exceptional or uncontrollable circumstances” due to the “precipitous and unforeseen decline” in Oregon’s financial resources. The State of Oregon respectfully requests a waiver in the amount of $15,674,579 for 2010-11.

New Jersey cut about $52M in special education funding and requested a waiver last September. West Virgina requested a waiver last year and it was granted. Iowa requested a waiver and it was granted.

Certainly we don’t want states to lose even more money for Special Education, but part of the Federal contribution is to encourage states to keep from cutting Special Education.

Shrinking special ed counts in San Diego Unified

9 Mar

The On Special Education blog at Education Week has a piece up that intrigued me: Fewer Special Ed. Students? Or Fewer Identified?

On Special Education referred back to this story (Where Did the Kids with Disabilities Go?) on Voice of San

I’ve been reading a lot of stories about the high numbers of special education students around the country lately. San Diego Unified has the opposite trend:

“School district officials counted nearly 1,600 fewer special education students this December than three years ago. That adds up to a 9.5 percent drop over the same time that overall enrollment fell only 1 percent,” writes Emily Alpert.

I decided to take a quick look at the data for San Diego Unified. I’ll warn you here, I didn’t find a clear indication of what is going on:

Total Special education students:

2006: 17,015
2007: 16,849
2008: 16,450
2009: 16,124

A drop of 891 students (about 5%)

Compare this to the figures for San Diego County as a whole:

2006: 58,745
2009: 58,475

A drop of 270 students (0.5%). San Diego Unified, the district, is dropping about 10x faster than San Diego county.In other words, the rest of San Diego County actually went up by about 600 students while San Diego Unified went down.

For those wondering (this is an autism-focus blog, after all), the number of students in the “autism” category went up notably in that time for the district, from 848 to 1,275. This is the opposite trend as the Special Education numbers as a whole, and more consistent with what the rest of the state is seeing.

Back to the drop: So why are the number of special education students going down? Emily Alpert of Voice of San Diego wrote about why she chose this story:

Some of the biggest drops have been in the same kinds of disabilities that a Harvard researcher tagged as having disproportionate numbers of minority students.

I decided to take a look by category and by race/ethnicity. It isn’t so clear to me. There are big drops in multiple categories including:

Specific Learning Disability: 7,260 (2006) to 6,584 (2009)
Speech Language Impairment: 4,040 to 3,351
Mental Retardation: 1,058 to 936
Emotional Disturbance: 1,032 to 839.

How does this break down by racial/ethnic status?

Let’s look at Specific Learning Disability as an example. Checking the three largest racial/ethnic groups (African American, Hispanic, White). Between 2006 and 2009, there were drops the SLD counts for all three:

White: 25% drop
Hispanic: 1.3% drop
African American: 21% drop

All three groups are seeing drops in the SLD counts, but Hispanics much less so, percentage wise.

Checking Speech Language Impairment (SLI) between 2006 and 2009:

White: 22% drop
Hispanic: 15% drop
African American: 44% drop

Again, there are drops across all three of these (the largest) racial/ethnic groups in San Diego Unified. And, again, Hispanics have the lowest drop. In this case (SLI), African American’s have the largest drop, percentage wise.

I know this is not a clear result. But I think that applies to the comments made in the San Diego press as well. Emily Alpert asked: “Is the imbalance in disability rates among students of different races changing or are the numbers just dropping?” It looks like neither is a clear answer. I wish I had the time to look at this more deeply. Clearly something or somethings is/are going on in San Diego Unified.

Is the imbalance in disability rates among students of different races changing or are the numbers just dropping?

Social determinants of state variation in special education participation among preschoolers with developmental delays and disabilities

23 Feb

Sometimes things we think should be constant aren’t. This is very clear with autism, where “rates” vary with time and geography. Anyone have a reason why the autism prevalence in Alabama is almost 1/2 that of New Jersey?

These sorts of issues intrigue me. So when a paper showed up recently in one of my pubmed searches, I had to take a look.

Social determinants of state variation in special education participation among preschoolers with developmental delays and disabilities

Children with developmental disabilities are at risk for secondary complications and lower academic performance, which contributes to lower health and well-being and may be ameliorated by access to special education services. This paper examines state variability in preschool special education participation among a United States population-based cohort with parent-reported developmental delays and disabilities. Analyses explore the extent to which observed variability can be explained by state socio-economic attributes and special education policy and funding. Rates of special education varied significantly across states and were highest in states with least income inequality and lowest in states with most income inequality. Place variation in preschool special education participation stems, in part, from child characteristics, but to a larger extent, from state socio-economic attributes.

Preschool programs for special ed kids have a wide variability in the attendance rates. Here’s a map that shows this variability (click to enlarge):

State differences in preschool special education participation among a national sample of 3–5 year olds (n=2435) with developmental delays and disabilities.

Being “non poor” or having a more “severe” condition is associated with attending special ed preschools. Where the funding comes from (state vs. local) has an impact on how many kids attend special ed preschool.

I don’t consider this study to be the most rigorous possible, but it does give us a view that social factors can have a large impact on issues such as special education participation.

California’s Specific Learning Disabilities Counter Epidemic

19 Feb

The U.S. and California Departments of Education recently released special education data (child counts) for the 2008-2009 school year. A particular focus in the media has been a tripling of the number of students who wear a special education label of “autism” in California.

Needless to say, some probably see this as confirmation of an “autism epidemic”. For a particularly myopic and emotional (anger and fear) interpretation of this recent news story, one need go no further than “Autism Epidemic” central (AoA) and read the data-free opinion piece by Anne Dachel.

For the bigger picture in California, a look at the actual data might be in order.

California Data

For those who may not be able to see the graph of the IDEA data that most closely represents the K-12 age group as a percentage of the resident population, receiving special education services for the last ten years in California: Autism has steadily increased from .13% to .64%, Specific Learning Disabilities has steadily decreased from 5.64% to 4.41%, and totals for all disabilities has remained flat at about 9.2%.

If you believe there’s been an “autism epidemic”, and that special education data from California proves that the schools are overwhelmed, here are a two questions for you:

1. What has caused the decrease in Specific Learning Disabilities (a decrease that more than offsets the increase in autism)?

2. If the special education totals remain unchanged, why are the schools “overwhelmed”?