Impact of Parental Training and Race on Services Negotiated at an IEP
(NOTE: The data itself is all made up - that was the point of the project but all the lit review and findings very much reflect reality of the ground situation for many families with autism)
Impact of Parental Training and Race on Services Negotiated at an IEP
With a diagnosis rate of 1:54 children, Autism Spectrum Disorder or ASD, has of late become the most rapidly diagnosed neurodevelopmental disorder. As a result, an increasing number of children are entering the special education system. While free public education for non-disabled school age children in the United States has been around for more than a century, the inclusion of disabled students is fairly recent with the 1975 Individuals with Disabilities Education Act, or IDEA (DREDF, 2014). IDEA stipulates that students be included in the public education system with related services, “if students require them in order to benefit from specially designed instruction,” (DREDF, 2014). Given that autism is a spectrum disorder and can vary widely in how it affects a specific individual, there is no uniform set of services that can be applied across the board. Thus the type and hours of services a child actually receives is negotiated at the IEP (Individual Education Plan) meetings between the school district and the parents of the child. The only redress to IEP disagreements is through mediation and lawsuits which can be intimidating for parents who enter the system with little to no knowledge of disability education.
Parallelly, Correll et al. (2002), points to societal judgements made about the Black community; that they are somehow less deserving. Goff et al. (2014) highlights racial bias in that Black children are thought to be less innocent than their White counterparts. What this racial bias translates to is substantial delays in the diagnosis of ASD for Black children, after the parents initially expressed concerns about the child’s development, despite the parents having health insurance (Costantino et al., 2020). Delays in the referral process and lack of timely ASD diagnosis often meant missing the crucial early years of services that could potentially lead to better outcomes (Dababnah et al., 2018). Non-White parents were often told that it was not ASD or given other diagnoses (Martinez et al., 2018). The 2020 Obeid et al., study further demonstrated implicit racial bias in ASD identification and stigma. In the study, White participants were more likely to diagnose Black children with conduct disorder and White children with ASD while the reverse was true for Black participants. In addition, Black parents themselves would delay in reporting ASD symptoms, mistaking it for disruptive behaviors, compared to White parents, even if the symptoms were more severe (Donohue et al., 2017).
Hypothesis: Parents who undergo IEP training will get more hours of services for their autistic child from the public school district as compared to parents who don’t, and the service hours are moderated by race, such that White parents will receive more services for their autistic child than Black parents.
Method
The sample size was 100 parents (either father or mother) of children with a clinical ASD diagnosis of elementary age, attending a special education program in the United States. 50 of the parents were Black and 50 were White. Each racial group was further divided into two groups, the experimental condition attending a one day training on special education laws, legal rights and the IEP process. The control groups did not receive this IEP training.
The study uses a 2 x 2 design. The first factor of parental training was manipulated with two levels, training or no training. The second factor of race, had two levels, Black or White. The dependent variable in this study was the number of hours per week of related services negotiated at the child’s IEP meeting between the school district and the parents following the training (or control). Related services refer to additional services on top of what is provided to all students in a special education classroom. These include 1:1 support hours, speech therapy hours, occupational therapy hours, behavioral therapy hours etc. Aggregated data for the four levels were analyzed.
Results
Descriptive statistics of aggregated (fake) data for each of the four profiles are summarized in the table below. The mean for the different profiles is also represented in graphical form below.
Discussion
The data from the study supports the hypotheses. The above graph clearly demonstrates a main effect of parental training level, such that a IEP training is positively correlated to more service hours that are negotiated with the school districts at IEP meetings, independent of race There is a second main effect of race, such that the school district provides more service hours to White children rather than Black children. In addition, as is evident by the differing slopes of the two lines representing race in the graph, there is an interaction effect or a joint effect that cannot be explained away by each main effect in isolation. Thus while parental training leads to better outcomes in terms of service hours, this effect is moderated by race, such that being White leads to better outcomes than being Black.
Though it is not designed to be so, in reality the IEP has become an exercise in skill and artful negotiation. On the one side are school districts which are historically underfunded and under-resourced so will watch every dollar that needs to be spent despite laws that insist on appropriate supports to enhance inclusion. Part of the issue is the ongoing stigma around disability itself, that it would be a waste to spend resources on kids who would not improve anyway. On the other hand are the needs of autistic children; effective and timely delivery of support services can positively impact their outcomes further on in their lives.
The results of this study are therefore not surprising. A working knowledge of and training of their child’s rights under IDEA and understanding the IEP process gives parents the confidence to act as an equal amongst the professionals, educators and other experts that dominate the IEP table. Trained parents can argue for and justify the need for services. For the same reasons, trained parents are better equipped to go to mediation or sue in order to resolve IEP disagreements.
The other main effect of race has historically been an issue across the board as discussed earlier in the introduction section, and it is not surprising that this is the case when it comes to services received by Black children than White children. Black children may be seen as less deserving of services and more so if they have a disability which already has a lot of historical stigma attached to it. So while the trained Black parent is able to obtain more services than a non-trained parent (irrespective of race), the effect is dampened by the race factor. That is to say, for the Black parents, the gap in services has not closed due to the fact of training alone.
This study has major limitations. Outcomes cannot be limited to just two factors as there can be other extraneous issues that come into play. For instance, funding for school districts is often linked to property taxes and poorer neighborhoods housing minorities may be even more resource constrained. The severity of ASD and other comorbid diagnosis and conditions have also not been factored in.
A future direction would be to further examine this interaction effect and also examine the effects of severity of ASD, and resultant outcomes in terms of services received.
References
Constantino, J. N., Abbacchi, A. M., Saulnier, C., Klaiman, C., Mandell, D. S., Yi Zhang, Hawks, Z., Bates, J., Klin, A., Shattuck, P., Molholm, S., Fitzgerald, R., Roux, A., Lowe, J. K., & Geschwind, D. H. (2020). Timing of the Diagnosis of Autism in African American Children. Pediatrics, 146(3), 1–9. https://doi.org/10.1542/peds.2019-3629
Correll, J., Park, B., Judd, C., & Wittenbrink, B. (2002). The police officer's dilemma: Using ethnicity to disambiguate potentially threatening individuals. Journal of Personality and Social Psychology, 83(6), 1314-1329.
Dababnah, S., Shaia, W. E., Campion, K., & Nichols, H. M. (2018). “We Had to Keep Pushing”: Caregivers’ Perspectives on Autism Screening and Referral Practices of Black Children in Primary Care. Intellectual & Developmental Disabilities, 56(5), 321–336. https://doi.org/10.1352/1934-9556-56.5.321
Donohue, M. R., Childs, A. W., Richards, M., & Robins, D. L. (2019). Race influences parent report of concerns about symptoms of autism spectrum disorder. Autism: The International Journal of Research & Practice, 23(1), 100.
DREDF. (2014, March 09). Individuals with Disabilities Education Act (IDEA). Retrieved from https://dredf.org/legal-advocacy/laws/individuals-with-disabilities-education-act-idea/
Goff, P., Jackson, M., Di Leone, B., Culotta, C., & DiTomasso, N. (2014). The essence of innocence: Consequences of dehumanizing Black children. Journal of Personality and Social Psychology, 106(4), 526-545.
Martinez, M., Thomas, K. C., Williams, C. S., Christian, R., Crais, E., Pretzel, R., & Hooper, S. R. (2018). Family Experiences with the Diagnosis of Autism Spectrum Disorder: System Barriers and Facilitators of Efficient Diagnosis. Journal of Autism & Developmental Disorders, 48(7), 2368–2378. https://doi.org/10.1007/s10803-018-3493-1
Obeid, R., Bisson, J. B., Cosenza, A., Harrison, A. J., James, F., Saade, S., & Gillespie-Lynch, K. (2020). Do Implicit and Explicit Racial Biases Influence Autism Identification and Stigma? An Implicit Association Test Study. Journal of Autism and Developmental Disorders, 1. https://doi.org/10.1007/s10803-020-04507-2
Redefine the Table
“It is the existence of laws like the ADA that ... allows me to not just demand a seat at the table so that individuals like me can be part of the conversations around change, but question if the table itself needs to be redefined.”
-Hari Srinivasan, “Born Into the ADA”
The Daily Californian
Transitions to Adulthood Panel - ASAN 2020 Gala
Thank you.
https://www.youtube.com/watch?v=2klBB1Tow4A&fbclid=IwAR2XIoXysvRB-Y-uux8JWzfvJjzUVGodcc2aIxvvgrl8Waj6jibOtOdkEv8
Autism DeCal Fall2020
Class 5: 10/5/2020
Today we covered common therapies used in Autism.
Our Guest speaker was Dr Lawrence Fung who heads the Stanford Neurodiversity Project
Class 4: 9/28/2020
Today we covered common therapies used in Autism.
Our Guest speaker was Noor Pervez from ASAN to speak on intersectionality.
Class 3: 9/21/2020
Today we wrapped up our "Law Enforcement" Topic and covered "Autism in the Context of the Disability Rights Movement."
Our guest speaker was Prof Steve Hinshaw with another powerful talk on Stigma.
Class 2: 9/14/2020
In today's Mini Lecture portion, we focused on Autism interaction with Law Enforcement
We had our first Guest Speaker on - Dr Clarissa Kripke on Sensorimotor Issues in Autism. Some tech difficulties as our speaker was not able to access our Zoom. So switched to Google Hangouts!!
Survey Q: What interests you about this class
- A friend of mine works with kids with autism and I would like to educate myself more on this topic so that I can be more well versed in this subject area when i talk to them. I would like to learn about pretty much anything y'all find most important, I'm just a dude trying to learn as much as possible.
- It is interesting to learn about the spectrum of autism and how individuals cope with certain levels of the spectrum.
- I am interested in learning more about adults with autism and the kind of support needed and barriers experienced later on in life. I also know a little about who women and girls are less likely to be diagnosed with autism until later on in life due to the way ASD is gendered, but I am curious to learn more about that.
- I hope to build my awareness and knowledge of autism so that I can better understand and be an ally to those around me. I feel that autism is often stigmatized as a disability, and I want to learn more about how we can combat this thinking. I want to learn what symptoms and behaviors are associated with autism.
- - I am interested on how I can be more cognizant of those on the spectrum. Additionally, as an intended disability studies minor, I want to learn more about personal stories by listening to guest speakers etc.
- I am very interested in taking this course because of my interest in better understanding disabilities on many levels. I am aiming to pursue a career in disability research but believe heavily in the importance of understanding disabilities on a personal / social level before having the right to study them on a molecular / neurological level.
- As being on the spectrum, I want to learn more about the condition and maybe provide some insight into the daily life of an autistic person.
- I want to learn more about the autism spectrum, and what it looks like to proactively involved.
- more information about life with autism and advantages or disadvantages
- As a Psychology major, I find that I haven't actually learned much about autism in my classes, although I've learned about mood disorders, intellectual disabilities, and learning disorders. So, I'd like to learn more about the realities of autism and treatment options available.
- I would like to get a more holistic view about autism from different disciplines as well as hear from the guest speakers!
- why they have tendency too hyperfixate. how to navigate social situations with them.
- I've seen autism depicted in media, and am curious to see if their depictions are accurate, and i just want to understand and be able to empathize more with people who do have autism.
- I've always wanted to take a class focused on Autism, and I came to know of this class through Obama's Instagram ;) I would like to learn more about Autism through the perspective of someone with Autism. I also would like to learn more about the biological basis behind autism. Overall, I am most excited to meet more people and hear everyone's various experiences.
- Just want to gain some general understanding about Autism to be able to broaden my sensitivity to and understanding of the needs of neurodiverse people :)
- I'd like to hear about what it's like to be autistic from someone who has autism and how to be a helpful ally.
- I am pursuing the disability studies minor and would like to educate myself more around the topic of disability. I think this will be a great way to know more about autism as we are taught very little about it in school.
- I would like to meet other people on the spectrum, hear there stories / experience and have a safe place to share my own.
- I'm interested in this course because I've learned a couple of things about the autism spectrum from my child development and psychology classes, but not a significant amount, and I guess I've just realized recently that I'm relatively ignorant on the subject. I'd like to change that. I don't have anything specific in mind to learn more about but I'm very excited to learn more!
- I would love to learn more about autism alongside disability justice. I took a city planning for disability course a while back and it was very valuable and I learned a lot!
- I would like to educate myself about people with autism. I took a course with professor Hinshaw and it was really interesting and I would like to learn more about Autism.
- I joined this class because I have a family member who was recently diagnosed and I wanted to learn as much as I could about Autism Spectrum Disorder so that I could support that family member. I'm interested in learning about family dynamics and learn more about the current research on ASD.
- I would like to better understand autism and learn how I can positively impact the community.
- I have a twin brother who was diagnosed with ASD in the 5th grade. From this course I want to learn more about ASD in hopes to better understand my brother. My brother is considered "high functioning", so I'm really curious how doctors diagnose someone with Autism and how they decide if they're low/high functioning. My brother has also struggled with IEP accommodations growing up, so I would like to know how disability programs work at public schools and how schools decide if a student qualifies for IEP/DSP accommodations.
- I study neurodevelopment with relevance to ASD. I would like to learn more about ASD from perspectives beyond my research area, particularly disability rights/advocacy and intersectionality. I am hoping to have a better understanding of how I as a researcher can interact with the autism community in a positive way that doesn’t cause harm. I’m hoping this class will give me the space to think about ways to center the interests and needs of folks with autism in my research and beyond.
- Really excited for this class
- It’s felt like talking about autism was taboo, but I really want to understand what the experience is and how to support folks who may have autism.
- Excited about the reading list you put together.
Class 1: 9/31/2020
A little weird doing this all remote but we adapt for the times. Also have a grad student auditing the class which is kind of cool.
Registration for the DeCal
Registration for the 1-unit, seminar-style, 1:54 Autism Spectrum Disorders Decal is now open. Class has filled up very fast in past semesters.
Member of ASAN Board
Housing for Adults with Autism in the Bay Area
Housing for Adults with Autism in the Bay Area
Additional Note:
1:68 Autism Decal Class Spring 2019 Semester
Last Day
5/1/19" Last day of the Autism DeCal Class that I teach at UC Berkeley for this semester.![]() |
Autism DeCal Class |
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The Instructors - Hari, Lily, Jordan, Maria |
Midterm Presentations
Pretty good!!!
Planning a DeCal is a lot of Work
