Showing posts with label Policy/Law. Show all posts
Showing posts with label Policy/Law. Show all posts
Impact of Parental Training and Race on Services Negotiated at an IEP
This was an research paper written for my Psych 167AC Stigma and Prejudice Course with Prof Mendoza-Denton.
(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)
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.
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.
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.
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.
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
(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
I learned a lot from the others on the Panel and from the audience comments.
Thank you.
https://www.youtube.com/watch?v=2klBB1Tow4A&fbclid=IwAR2XIoXysvRB-Y-uux8JWzfvJjzUVGodcc2aIxvvgrl8Waj6jibOtOdkEv8
Thank you.
The Autistic Self Advocacy Network
, fellow panelists Jordyn Zimmerman
and audience.https://www.youtube.com/watch?v=2klBB1Tow4A&fbclid=IwAR2XIoXysvRB-Y-uux8JWzfvJjzUVGodcc2aIxvvgrl8Waj6jibOtOdkEv8
ACI Experiences
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
To prep students, we asked the question
We will be wrapping up this topic in the next class as we got ready for the Student Presentations and the Guest Speaker.
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.
https://classes.berkeley.edu/content/2020-fall-psych-198-006-grp-006
Course #23457 Enroll through CalCentral
Timings: Monday 5-7pm.
Class Starts: Aug 31, 2020
Class limit: 40
Contact: SpectrumDeCal@gmail.com
The Autism DeCal got featured on President Barack Obama's Instagram in July on 30th anniversary of the Americans with Disabilities Act
https://www.instagram.com/p/CDKTNl7gtZD/ (2nd story)
About the Decal: In this DeCal, not only will you learn about possible neurobiological roots of ASD, you will also discover its research beginnings, possible intervention therapies, family dynamics, law, the role of technology, media portrayals, child and adult life, stigma, public outreach, and public awareness.
The primary goal of this course is to stimulate and encourage a deeper understanding about individuals who meet the DSM-5 criteria for ASD and their families.
Instructors: Hari Srinivasan, Eli Oh, Helen Lee, Kate Bierly
Member of ASAN Board
It's confirmed. I'm a member of the ASAN board
==========
When I got asked by Exec Director, Julia Bascom,
it was a resounding yes from me
 |
| https://autisticadvocacy.org/about-asan/leadership/ |
 |
| As Julia Bascom says on her Twitter - she is taller than everyone. |
Other posts on ASAN
Housing for Adults with Autism in the Bay Area
A Paper for my Introduction to Disability Studies Class
Housing for Adults with Autism in the Bay Area
Children with autism spectrum disorder (ASD) grow up to be adults with ASD, as autism does not magically go away in adulthood. The prevalence of ASD is rapidly increasing, with the CDC (2019) placing the diagnosis rate at 1:59 children. This means that there are an increasing number of autistics exiting the school system and entering the adult world (Marino, 2018). However, as I find when trying to navigate the adult world of autism, supports and services are not just inadequate but the existing supports are not prepared to deal with the varied and unique needs of adult autistics. The situation can be complex as there is a huge spectrum of profiles within autism itself, a factor that also comes into play in the case of housing. While many autistics function independently with little to no support, a significant number are not employed and need more support for daily living. This paper focuses on the housing challenges for adult autistics needing more support in the Bay Area.
Other topics in the adult ASD world that were considered during the web search were Adult Day Programs and employment. The first was concerning as many of my peers have not been accepted into any Adult Day Program due to “autism behaviors.” Adult Day Programs typically support people with disabilities (PWD) after they exit the special education system at age 22 (Escher, 2014) and range in the level of support provided. The second issue of employment is equally concerning as according to the National Longitudinal Transition Study only, “58% of young adults ages 20-25 with ASD who had been in special education in secondary school had ever worked during their early 20’s” (Marino, 2018).
As the process of deinstitutionalization began all over the US, an important piece of legislation in California that directly impacted housing for individuals with developmental disabilities like autism was the Lanterman Act of 1969. It opened the doors to the “right to get the services and supports [autistics] need to live like people without disabilities” (The Lanterman Developmental Disabilities Services Act, n.d.). It allowed for the creation of Regional Centers which are nonprofits that contract with the Department of Developmental Services (California Department of Developmental Services, 2018). Social workers at the Regional Centers help coordinate tailored services and supports including full or partial funding depending on the type of housing. Yet the housing situation in the Bay Area as summed up by Lisa Kleinbub, executive director of the Regional Center of the East Bay, is that there is, “a pent-up demand right now among young (special-needs) adults for housing...They’re housed in settings that really aren’t what they want.” (Kendell, 2019). Kleinbub goes on to add that there are fewer than 100 units for the 4500 units of housing needed in Alameda and Contra Costa counties. When it comes to Santa Clara, Santa Cruz, Monterey, and San Benito counties, Kleinbub states that almost eighty percent of the 17,500 clients live with their parents (Kendell, 2019).
In this research, it is useful to briefly look at some of the current housing options as listed by the San Francisco Autism Society. The most common and well known are the Group Homes or Community Care Facilities. The typical three-bedroom group home is privately owned and licensed by the state and can house up to six individuals with the state paying the group home for each individual depending on the level of care needed. Group homes provide an all-in-one solution (ASD Housing Options, 2019).
Apartments and co-ops are arrangements where an individual lives alone or with shared living space. Staffing support is provided through agencies or individuals that provide Supported Living Services (SLS) or Independent Living Services (ILS) (ASD Housing Options, 2019). The big advantage of using SLS and ILS is that the client, “retains separate control over housing choice and support staff...[even as they] need support to carry out choices” (ASD Housing Options, 2019). Rents are expected to be funded through social security income received by the individual and Section 8 vouchers which landlords can make use of to rent apartments at fair market value.
The autism community model is increasingly popular and is loosely based on a retirement community model, offering housing, community and sometimes programming options. Two of my peers will have a future home in the Clearwater Ranch in Sonoma county. Spread over 80 acres it will feature many single-family homes, each housing four ASD adults (with their own room) and two caretakers. Another example is the Sweetwater Community in Sonoma County and the soon to be completed Summer Hill project in Pleasanton (Kendell, 2019). Extra support needed for individuals would still have to be organized via SLS and ILS agencies (ASD Housing Options, 2019).
However, each type of housing option comes with its own set of challenges and more so in the context of the Bay Area. A small subset of these issues are discussed below.
The first issue is that “even in situations where PWD are not able to live independently, living in community settings is generally considered preferable to institutionalization (if adequate support is provided)” (Schur, Kruse, & Blanck, 2013, p. 124). Group homes and SLS/ILS housing are more in line with the principle of housing in community settings. So there is debate over whether the creation of exclusive communities for autism would be a form of “gilded” segregation. But Kleinbub feels that the community model may work as long as, “residents have opportunities to venture beyond the building” (Kendall, 2019). I also want to add that that it is worrying that so many autism communities are coming up in Sonoma county which is likely to be the site of recurrent wildfires as climate change is not likely to reverse course in the immediate future. As we learned in class, PWD are most at risk during rescue and evacuation attempts.
A fundamental problem is that many of the housing solutions for the disabled community were not envisaged for the behavioral issues that often accompany autism. Housing in the community is easier when there are fewer “disruptive” behaviors. Some autistics may find it difficult to share rooms in Group Homes or have close proximity, others may have frequent meltdowns or behaviors that other autistics may not be able to tolerate. A friend was sent back to his parental home from two different group homes as they could not manage his behaviors.
Training staff to the unique needs of the individual has been a challenge especially if an individual is seen as having more support needs. My friend Tyler Fihe, now in his 30s, has been living on his own in an apartment with SLS support since age 19. He states in a youtube video he made for the 1:59 Autism Spectrum Disorders DeCal class here at UC Berkeley, “I wish I could say that I have been fully in charge of my household...having trained, probably hundreds of staff over the years. I finally wrote an operations manual. It is hard work to keep it up to date, but it is harder to teach the same basics over and over again” (Fihe, 2019).
The Bay Area is very expensive to live in, making it almost impossible to find affordable housing for adult autistics. According to the Bay Area Market Reports, the median home price in the Bay Area is $980,000 compared to the California average of $609,000 and the United States average $279,600 (Bay Area Real Estate Markets Survey, 2019). Rents are also prohibitive, the national average at $1,465 compared to $3,240 in Berkeley, and $2,789 in San Jose (Bona, 2019). It is not without some irony that the social security income received by an adult, which averages $1000 a month, “is expected to fund the rent, utilities, food and living expenses“ (ASD Housing Options, 2019).
The high cost of living affects support services as well. In his video, Fihe adds, “Staff turnover has always been a major problem. The pay for staff is ridiculously low. It bugs me that my staff could make more money making lattes and mochas than helping me have a life. Our society values seem pretty screwed up to me" (Fihe, 2019). Two of Fihe’s SLS agencies have shut down in the last ten years due to staff not being able to afford to live in the bay area (Fihe, 2019). This is a continuing trend. Group homes are again paid a flat state fee which does not account for the geographical cost of living (ASD Housing Options, 2019). The group home of another friend is moving to a rural area to lower their cost of operation. When that happens either you live too far away from your family to visit or move back into the family home as you continue to search for other (almost non-existent) options.
Even in the case of solutions like the communities, either the cost of entry is prohibitive or the affordable ones have long waitlists. A family I know bought into Clearwater Ranch a few years ago for $200,000 and the other family recently at $350,000. It guarantees a room for the lifetime of the ASD adult. 300 individuals have expressed interest in the 31 units of the more affordable Sunflower Hill community project with rents from $300 to $1,500 a month (Kendell, 2019).
One of the concerns for adult autistics and their families is the potential for abuse and neglect in any housing option. The social worker for a severely impacted ASD friend paid a surprise visit to his SLS apartment and found his careworker on top of him. His horrified parents immediately moved him back to the parental home for now.
Group homes have the most oversight in that they are licensed. However, my social worker remarked that it was impossible to physically visit each client more than once or twice a year as she had a huge caseload, many of them in different group homes. According to the San Francisco Autism Society, some group homes may also choose to limit family involvement and oversight (ASD Housing Options, 2019). Historically, a lack of oversight and accountability contributes to neglect or abuse (UNICEF, 2005, p. 12).
A majority of adults continue to live in the family home for many years due to this housing crisis. There is some advantage to living amongst familiar friends and family which gives a sense of belonging (ASD Housing Options, 2019). While it is actually cost-effective for the state to have the adult continue to stay with their families into adulthood, there is currently a huge financial disincentive to do so (ASD Housing Options, 2019). The full range of ILS and SLS services cannot be accessed unless the adult autistic resides in a separate address. Aging parents simply cannot continue to provide the same level of care without access to significant SLS support, so autistics are often forced into housing options that are less than optimal. Changes in legislation to enable adults to continue living in the parental home with full SLS/ILS support could help alleviate some of this housing crisis until better alternatives can be found.
Families can indeed play an important role in the oversight process of “service delivery and monitoring of safety” (ASD Housing Options, 2019). My social worker had once mentioned that some parents are buying a smaller second home close by for their adult child so that the parents can better monitor service delivery. Buying a second home in the Bay Area is however impossible for most. Some family friends have bought two houses on the same street in cheaper areas like the outskirts of Sacramento, one for themselves and one for their adult ASD family member. A family I know in San Jose is working on converting their “in-law” unit through city permits into a separate address. Caseworkers in Marin County have also indicated to a family I know that the county was now encouraging the building of in-law units on existing properties and zoning them as separate addresses. It is part of the attempt by Marin county to address the housing crisis for adults and the hope is that more counties will follow suit.
Essentially the state has been unprepared for the exploding numbers of adults with autism which has rushed their housing needs into a crisis mode, more so in an expensive geographical location like the Bay Area. Changing legislation to build and rezone in-law units on existing properties as well as continued residence in the parental home with full SLS support may help alleviate some of this crisis. Thousands of affordable units also need to be built as well as other incentives to make rents affordable. Staffing is a critical component for this population so affordable housing for staff also needs to be addressed. In addition, there is the issue of addressing the unique and behavioral needs of the autistics themselves to consider, which impacts the type of housing they need. The overriding issue of disability rights still remains unresolved for the autism population - that of inclusion via community-integrated housing versus a new form of segregation with the creation of autism communities. There is clearly a housing crisis for this vulnerable population and currently no simple solutions.
Additional Note:
Additional Note:
Something which appeared almost like a conundrum to me (and Prof Marsha Saxton also hinted at this in class) was the Independent Living Paradigm. PWD (People with Disabilities) went from being dependent on their families to living and making decisions on their own; the shift in decision making towards self-determination is just amazing progress. It truly represents the disability rights mantra of, “Nothing about us, without us.” In my adult autism housing web paper, one of the options mentioned (or adults with more support needs is supported living, which is a form of independent living.
The concern is that independent living unless arranged properly can result in isolation. It could end up with just the autistic and a caretaker who will leave for their own family home when their shift ends. The thought of loneliness is one of the most terrifying fears for a lot of folks including me. Just parking a person in the middle of a community with personal assistants does not mean inclusion or a sense of community. A great irony is that the non-disabled neurotypical population places so much emphasis on being surrounded by family and friends yet the disabled are pushed towards becoming an “independent island” that has to live away from the family. Isn’t having some sort of self-determined, independent living arrangement in your family home or near your family a better option - so you continue to have access to that network of friends and family in your life rather than just a series of paid caretakers alone. Staff turnover is so high in the Bay Area and it is hard for a PWD to get a sense of stability or mental calm when you know 'paid people' around you will/can quit anytime.
We need hybrid housing options that allow for self-determination yet incorporate the opportunity for being included in the community and access to the family and friends network. Doing the paper both educated and worried me as it seemed to me that those of us with more significant disabilities will be at the mercy of caretakers and support agencies. It was no surprise to me to hear that some PWD got abandoned by their caretakers during the Paradise wildfire 2 years ago.
References for Web Paper.
ASD Housing Options. (2019). Retrieved October 14, 2019, from https://www.sfautismsociety.org/housing-options-for-adults-with-autism.html.
Bay Area Real Estate Markets Survey - Compass. (2019, October). Retrieved October 14, 2019,
Bona, S. (2019, July 22). Bay Area Rent Report - June 2019. Retrieved October 14, 2019, from
California Department of Developmental Services. (2018, June 8). Information About Regional
Centers. Retrieved November 11, 2019, from https://dds.ca.gov/RC/.
CDC. (2019, September 3). Data & Statistics on Autism Spectrum Disorder. Retrieved from
https://www.cdc.gov/ncbddd/autism/data.html.
Escher, J. (2014, January 22). Commentary: What happens when autistic children become
adults. Retrieved October 14, 2019, from
Fihe, T. [Tyler Fihe]. (2019, April, 9). Tyler Fihe [Video File]. Retrieved from
Kendall, M. (2019, May 21). Why the housing crisis hits this Bay Area group especially hard.
Retrieved from
The Lanterman Developmental Disabilities Services Act. (n.d.). Retrieved November 11, 2019,
Marino, S. A. (2018, September 13). The Special Ed Epidemic: What happens when they age
out of school? Retrieved October 14, 2019, from
Schur, L., Kruse, D., & Blanck, P. D. (2013). People with Disabilities: Sidelined Or
Mainstreamed? New York: Cambridge University Press.
UNICEF. (2005, July 28). Violence against Disabled Children: UN Secretary Generals Report
on Violence against Children Thematic Group on Violence against Disabled Children
(Summary Report) New York: United Nations. Retrieved November 11, 2019, from
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
3/13/19: Listening to Student Presentations for the Midterm Paper in my 1:68 Autism DeCal Class.
Pretty good!!!
Pretty good!!!
Have already read a bunch of the papers and will upload grades and comments as soon as my midterms are done next Wed!!
Planning a DeCal is a lot of Work
1/30/19 The DeCal team has been meeting and planning our lectures for some time now. I was able to suggest a few topics too.
We have a number of guest speakers lined up for this semester. Lots of emails to sent and dates to be coordinated.
I think this is going to be a most interesting experience for both the students and me.
Teaching a DeCal at UC Berkeley
An amazing opportunity this semester.
I'm going to teach a 1-unit class (called DeCal) at UC Berkeley along with 3 other neurotypical students. The class is 1:68 Autism Spectrum Disorder.
Class roster is full - 25 students. Plus more students on the waitlist!!!
I was so thrilled to see the word "Instructor" on the Cal Central website. I think I will be the first non-speaking autistic instructor at Berkeley.
I feel both humbled and honored.
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