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”?

Work stress, burnout, and social and personal resources among direct care workers.

18 Feb

No surprise, people who have jobs caring for people with intellectual and developmental disabilities face a lot of stress. A recent paper has looked into what causes and alleviates the stress for these workers.

Work stress, burnout, and social and personal resources among direct care workers.

Gray-Stanley JA, Muramatsu N.

School of Nursing and Health Studies, Northern Illinois University, 253 Wirtz Hall, DeKalb, IL 60115, United States.
Abstract

Work stress is endemic among direct care workers (DCWs) who serve people with intellectual and developmental disabilities. Social resources, such as work social support, and personal resources, such as an internal locus of control, may help DCWs perceive work overload and other work-related stressors as less threatening and galvanize them to cope more effectively to prevent burnout. However, little is known about what resources are effective for coping with what types of work stress. Thus, we examined how work stress and social and personal resources are associated with burnout for DCWs. We conducted a survey of DCWs (n=323) from five community-based organizations that provide residential, vocational, and personal care services for adults with intellectual and developmental disabilities. Participants completed a self-administered survey about their perceptions of work stress, work social support, locus of control, and burnout relative to their daily work routine. We conducted multiple regression analysis to test both the main and interaction effects of work stress and resources with respect to burnout. Work stress, specifically work overload, limited participation decision-making, and client disability care, was positively associated with burnout (p<.001). The association between work social support and burnout depended on the levels of work overload (p<.05), and the association between locus of control and burnout depended on the levels of work overload (p<.05) and participation in decision-making (p<.05). Whether work social support and locus of control make a difference depends on the kinds and the levels of work stressors. The findings underscore the importance of strong work-based social support networks and stress management resources for DCWs.

What adds to burnout? Work overload. Not being involved in decision making. Also, levels of client functioning, mobility, and intellectual abilities are a factor. If I read the paper correctly, levels of client functioning are a bigger factor than work overload.

Supervisor support and coworker support alleviated some of the stress and burnout.

The study concludes:

Policies or interventions developed as a result of this analysis might include strategies to foster work-based social support networks (i.e., team building efforts), as well as interventions to help workers develop personal stress management resources (Tierney, Quinlan, & Hastings, 2007). Successful protocols, once identified, can contribute to improved DCW job morale and ultimately better client care.

I don’t think stress and the sources of stress come as any great surprise. However, the more information available to make notions into supported facts, the better. If this can help caregivers and caregiver organizations support in reducing workload and adding methods to alleviate stress, so much the better for all. Especially the clients.

Should a person who victimizes the disabled be allowed a short sentence?

18 Feb

A recent case in the Los Angeles area involved the sexual assaults of women in group homes. The case came to light when videos of the assaults were provided to the police. At least two of the assailants have been identified.

One of them has pled “no contest” to the charges. In return he is being offered a reduced sentence: 8 years (down from a maximum possible of 27). He would have to serve at least 85% of the time, and would have to register as a sex offender.

The deal is not sitting well with everyone:

The mother of one of the victims, a Rosemead woman, said that the deal came as a surprise and that she hoped the judge would reject it.

“Eight years is nothing for all the damage he has done to all these kids and their families,” the mother said.

A spokesperson for the LA district attorney’s office is quoted as:

“With these kinds of cases we never want to subject the victims to more trauma, and this was a difficult case because of the victims’ disabilities,” she said. “We felt that this [resolution] was appropriate.”

I am left with the question of whether the victims approached on this plea deal. Were the victims willing to testify, it should be their decision. The rationale put forth by the DA’s office that this is to prevent further trauma.

ARCA, the Association of Regional Center Agencies, has come forward calling the plea deal an injustice:

The Association of Regional Center Agencies, an advocacy group representing 21 California regional centers serving children and adults with developmental disabilities, says the plea bargain for Juan Fernando Flores is an injustice.

Irony and fear

17 Feb

I tried to stay away. Honestly. I’ve had enough of Andrew Wakefield for a long time. But a news story came out with two paragraphs that I couldn’t let go.

From DallasNews.com is an article “Some parents embrace discredited researcher whose studies link autism to vaccinations”. In it, Andrew Wakefield is quoted as saying:

“The tragedy is that it’s taking attention away from the real issues of how to help these poor children,” the 54-year-old surgeon said in
an interview Friday.

How much time has been wasted by parents and researchers in the MMR story?

That’s the irony. Now the fear.

Today, Wakefield, who hopes to open an Austin residential facility for autistic adults, said he regrets having to spend so much time
defending his 13-year-old study.

OK, I don’t really fear this as (a) I doubt it will come to pass and (b) I doubt my kid will end up in Austin.

So many thoughts go through my head thinking about Andrew Wakefield running programs for autistic adults. I seriously am at a loss for how to put those thoughts into words.

Prevalence and functioning of children with cerebral palsy in four areas of the United States in 2006: A report from the Autism and Developmental Disabilities Monitoring Network

16 Feb

Most of what we hear (especially on this blog and other autism focused sources) about the Autism and Developmental Disabilities Monitoring Network (ADDM) is, well, autism related. Mostly we get the prevalence estimates for the CDC from this source. Sometimes I admit, I forget that “and Developmental Disabilities” is in there.

A recent paper shows that the ADDM is more broad than just autism. And, at the same time, gives some interesting autism information. The paper is: Prevalence and functioning of children with cerebral palsy in four areas of the United States in 2006: A report from the Autism and Developmental Disabilities Monitoring Network

Here is the abstract:

Prevalence and functioning of children with cerebral palsy in four areas of the United States in 2006: A report from the Autism and Developmental Disabilities Monitoring Network.

Kirby RS, Wingate MS, Van Naarden Braun K, Doernberg NS, Arneson CL, Benedict RE, Mulvihill B, Durkin MS, Fitzgerald RT, Maenner MJ, Patz JA, Yeargin-Allsopp M.

Department of Community and Family Health, College of Public Health, University of South Florida, 13201 Bruce B. Downs Blvd, MDC56, Tampa, FL 33612, United States.
Abstract

AIM: To estimate the prevalence of cerebral palsy (CP) and the frequency of co-occurring developmental disabilities (DDs), gross motor function (GMF), and walking ability using the largest surveillance DD database in the US.

METHODS: We conducted population-based surveillance of 8-year-old children in 2006 (N=142,338), in areas of Alabama, Georgia, Wisconsin, and Missouri. This multi-site collaboration involved retrospective record review at multiple sources. We reported CP subtype, co-occurring DDs, Gross Motor Function Classification System (GMFCS) level, and walking ability as well as CP period prevalence by race/ethnicity and sex.

RESULTS: CP prevalence was 3.3 (95% confidence interval [CI]: 3.1-3.7) per 1000 and varied by site, ranging from 2.9 (Wisconsin) to 3.8 (Georgia) per 1000, 8-year olds (p<0.02). Approximately 81% had spastic CP. Among children with CP, 8% had an autism spectrum disorder and 35% had epilepsy. Using the GMFCS, 38.1% functioned at the highest level (I), with 17.1% at the lowest level (V). Fifty-six percent were able to walk independently and 33% had limited or no walking ability.

INTERPRETATION: Surveillance data are enhanced when factors such as functioning and co-occurring conditions known to affect clinical service needs, quality of life, and health care are also considered.

I will admit that I did not know that the prevalence of ASD amongst those with cerebral palsey was so high, 8%. It is interesting to note that there is a geographic variation in the prevalence estimates of CP, from 2.9 to 3.8 per 1000. This is not quite as large as the spread in autism prevalence estimates by state, but it is pretty big.

A Comparison of Autism Prevalence Trends in Denmark and Western Australia.

15 Feb

I bring this up because there is a common argument that the autism “rates” in places like Denmark and Sweden are much lower than those in the US and elsewhere. This is used to try to negate studies using those country’s populations in, for example, showing that there is no increased risk from thimerosal or the MMR vaccine. This error often stems from comparing “incidence” to “prevalence”.

Is the autism prevalence low in Denmark? Not really. This paper just out (and other reports previously, including this one cited by Steven Novella) show a prevalence pretty comparable to the US.

J Autism Dev Disord. 2011 Feb 11. [Epub ahead of print]
A Comparison of Autism Prevalence Trends in Denmark and Western Australia.

Parner ET, Thorsen P, Dixon G, de Klerk N, Leonard H, Nassar N, Bourke J, Bower C, Glasson EJ.

Institute of Public Health, Department of Biostatistics, University of Aarhus, Aarhus, Denmark.
Abstract

Prevalence statistics for autism spectrum disorders (ASD) vary widely across geographical boundaries. Some variation can be explained by diagnostic methods, case ascertainment and age at diagnosis. This study compared prevalence statistics for two distinct geographical regions, Denmark and Western Australia, both of which have had population-based registers and consistent classification systems operating over the past decade. Overall ASD prevalence rates were higher in Denmark (68.5 per 10,000 children) compared with Western Australia (51.0 per 10,000 children), while the diagnosis of childhood autism was more prevalent in Western Australia (39.3 per 10,000 children) compared with Denmark (21.8 per 10,000 children). These differences are probably caused by local phenomena affecting case ascertainment but influence from biological or geographical factors may exist.

Prevalence of 68.5 per 10,000 children. A previous estimate was 80 per 10,000. Generation Rescue claimed a rate of 1 in 2200 (4.5 per 10,000) when they tried to make the case that…oh I bet you can guess…that vaccines cause autism. The 1 in 80 figure was already published, so I doubt they will change their story given yet another study.

Special Education Programs, Private Placements, Under Assault

15 Feb

Education week has an article, Special Education Programs, Private Placements, Under Assault, describing some of the recent efforts by states to reduce special education costs.

From Michael Bloomberg suggesting pulling students out of private placements. He cites $100M spent for 4,000 students. I had to check on what that means–it works out to $25,000 per student.

Would this really save money? Probably not:

Sweet said there’s actually very little difference between the dollars spent on private and public schools for special education students because both can easily cost more than $25,000 annually compared to about $17,000, on average, for a general education student.

EdWeek reports that a Texas lawmaker proposed charging parents tuition for state-run schools for the Deaf or Blind (a proposal that is against federal law). And Utah suggested cutting cutting schools for the deaf and blind altogether. They just forgot about the fact that deaf and blind students would still be in Utah and need an education.

Times are tough, economically. Special education is expensive. Let’s hope that few lawmakers go for the false economy of cutting special ed. It really isn’t going to give a real return.

Obama Budget Brings Mixed Bag For People With Disabilities

15 Feb

President Obama has released his proposed budget. From Disability Scoop: Obama Budget Brings Mixed Bag For People With Disabilities.

As far as special education, there is a slight increase proposed:

In a plan featuring flat or reduced spending for many programs, special education got a boost. President Barack Obama included $200 million in extra funds for state grants for the Individuals with Disabilities Education Act, or IDEA, and added $50 million to help young children with disabilities.

The increase is “modest” for an $11.5 billion program, says Deb Ziegler of the Council for Exceptional Children, which lobbies on behalf of special educators. But, she adds, “in this budget climate, we’re appreciative of anything we get.”

While not fully funding IDEA, this is good in light of republican plans to cut Special Ed funding.

On the other hand, support of adults is not faring well:

Other programs for Americans with disabilities are likely to fare worse. Under Obama’s proposal, funding to ensure voter access for people with disabilities will be eliminated. And there will be $104 million less in federal money available to build new housing for those with disabilities.

What’s more, a program that administers federal grants to promote the inclusion of people with developmental disabilities in the community is slated to be cut nearly in half.

“There’s a lot of stuff that’s very concerning,” says Ari Ne’eman, president of the Autistic Self Advocacy Network. “Everybody recognizes that these are difficult fiscal times but we need to make sure that we aren’t sacrificing the long-term rights and opportunities for people with disabilities.”

These are indeed difficult fiscal times. But we need to support people with disabilities. All people, not just children.

More at Disability Scoop.

House GOP Looks to Slash Education Spending

14 Feb

House GOP Looks to Slash Education Spending is an article at Education Week. It’s a scary read.

It starts out:

House Republican leaders put out a bill last night that would slice and dice education funding far below current levels and far below what President Barack Obama wanted in his never-enacted fiscal year 2011 budget request.

Fiscal year 2011. That’s this year. Yes, they would cut funds out of the budget that’s already ongoing. How much?

The measure, which would continue federal funding for rest of the fiscal year, takes aim at some programs that were previously considered untouchable, including special education spending and Pell Grants to help low-and-moderate income students pay for college. Overall it would cut $4.9 billion from the U.S. Department of Education’s fiscal year 2010 budget of $63.7 billion.

$4.9 billion. That’s a big chunk of change. About 8% of the total budget.

What really scares this reader is this statement:

Special education, which is typically a Republican priority, would be cut by $557 million, below its $11.5 billion funding in fiscal 2010.

About a 5% cut.

As we’ve discussed a number of times, in the US, the Federal government “committed” to pay 40% of special education costs. That commitment has never been met, with federal support levels of about 17% being more typical.

Schools will be facing budget cuts in the following year. State and local tax revenues, the primary source of elementary and secondary education funding, are down. Now is the time for the federal government to step in and make good on their commitment. Step in and help save the programs, help school administrators to focus on keeping kids in appropriate placements, not force them to make bad decisions in order to meet budgets.

The Autism Action Network is steaming mad at Bill Gates

13 Feb

I’m calling on readers to join an action alert by A-Champ (now the Autism Action Network). Well, “join”. You see, they are really mad at Bill Gates for calling out Andrew Wakefield in an interview on CNN. They want people to use a link to send a message to Mr. Gates. Well, the thing is, you get to send the message you want to send.

Here’s the backstory. Sanjay Gupta asked Mr. Gates about the recent press coverage of vaccines, specifically the autism question and Andrew Wakefield:

Gupta: There has been a lot of scrutiny of vaccines recently — specifically childhood vaccines. There has been a lot of news about is there a connection with autism, for example. What do you make of all that? Dr. [Andrew] Wakefield wrote a paper about this [in The Lancet in 1998] saying he thought there was a connection. And there were lower vaccination rates over a period of time as a result in Britain, then the United States. What are your thoughts?

Gates: Well, Dr. Wakefield has been shown to have used absolutely fraudulent data. He had a financial interest in some lawsuits, he created a fake paper, the journal allowed it to run. All the other studies were done, showed no connection whatsoever again and again and again. So it’s an absolute lie that has killed thousands of kids. Because the mothers who heard that lie, many of them didn’t have their kids take either pertussis or measles vaccine, and their children are dead today. And so the people who go and engage in those anti-vaccine efforts — you know, they, they kill children. It’s a very sad thing, because these vaccines are important

A-Champ, now the “autism action network” reworked this and focused Mr. Gates comment on themselves:

“We think Bill Gates should clarify who he thinks is killing children when he referring[sic] to parents who think vaccine injury may have caused their child’s autism.”

They provide a link to a site where you an send Bill Gates an email: http://capwiz.com/a-champ/utr/1/NRIKOOVHZR/CVCJOOVIIG/6429002946

The recommended message is:

Dear Mr. Gates,

I watched you on the Sanjay Gupta, MD program and was stuck by your description of people who question vaccine safety and the possible role of vaccines in causing autism as “baby killers.”

The Bill and Melinda Gates Foundation has, as one of its stated goals, improving vaccine safety. How is that different from the goal of the vaccine safety advocates you described as “baby killers?”

There is no question that vaccines injure and kill a portion of the people who get vaccines. This is an undisputed fact. And there is no question that vaccines can be made and administered with greater safety. But your comments only serve to end rational and meaningful discussion of vaccine policy.

I ask you to clarify who exactly who you are describing as “baby killers.” And to apologize to those people who have been injured or killed by vaccines and their families.

Sincerely,

Of course, you can delete this and add whatever your own message is. You can even change the subject line (probably a good idea if you want to have any chance of being read). Nothing keeps you from telling Bill Gates (or, more likely, his screener) that you disagree with groups like A-Champ.

A-Champ asked in their call “Please forward this message to friends and family and please post it to Facebook and other social networks.”

Glad to help.

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