Parental Autism Advocacy and Empowerment

In The Politics of Autism, I discuss the policy advocacy by autistic people, family members, and allies.

 Li, C., Cheung, W. C., Burke, M. M., Taylor, J. L., & DaWalt, L. S. (2024). Examining the associations among knowledge, empowerment, and advocacy among parents of transition-aged youth with autism. Autism, 0(0). https://doi.org/10.1177/13623613231221126   Lay abstract:

Parents of individuals with autism face many challenges in finding appropriate services and support for their children, and they also play an important role in advocating for their children’s rights and needs. Despite the increasing availability of advocacy programs, it is still uncertain how to best encourage parents to advocate for their children. This study explored the connection between parents’ knowledge and sense of empowerment, and how these factors relate to three types of advocacy activities (i.e. individual, peer, and systemic). The findings reveal that feeling empowered has a greater impact on advocacy than simply having knowledge. In addition, the study found that individual advocacy correlates to more peer advocacy, which also correlates to more systemic advocacy. These results can help researchers and professionals to better develop programs to increase parent advocacy and, in turn, help improve the lives of individuals with autism.

From the article:

Given this study’s findings, peer advocacy is an important intermediary step in bridging the gap between individual and systemic advocacy. Thus, more research about peer advocacy as a distinct construct and its relationship with individual and systemic advocacy is needed.

To that end, it is important to explore the nature of peer advocacy. In the United States, there has been an increasing emphasis on family navigator programs (e.g. Broder-Fingert et al., 2020; Burke et al., 2016; Feinberg et al., 2016; Magaña et al., 2017). Ultimately, the goal of these programs is to help access services. While family navigator programs are also becoming increasingly common, little is known about the attributes of the navigator that makes navigation effective. For example, some navigators are trained social workers in hospital settings (Feinberg et al., 2016) while other navigators are parents of children with disabilities (Magaña et al., 2017). Our study’s findings suggest that parents who are more empowered are likely to advocate for their peers (i.e. other families of individuals with disabilities). Thus, while not directly examining differences between navigators who are (and are not) family members of individuals with disabilities, our study suggests that peer advocacy may come more naturally to navigators with lived experiences as parents of individuals with disabilities. Furthermore, our study signals the importance of peer advocates especially when considering the need for systemic reform.

Partners in Policymaking

In The Politics of Autism, I write that autism parents must be advocates for their children, who in turn must grow up to be advocates for themselves.

Very quickly, parents will learn that there is no one-stop shopping in the autism world.  Various providers offer various services, with various levels of support from the government, which largely depends on where one lives. Wherever they turn, parents run into red tape.  “Trying to obtain services for a special-needs child is a never-ending process,” one mother told a Tennessee journalist. “Taking care of the children is much simpler than taking care of the paperwork.”  

Joseph Shapiro at NPR:

Most graduates of the Partners in Policymaking class are the mothers of young children with developmental disabilities. They've been meeting at this hotel one weekend a month for eight months.

They learned how to fight for their child in school, and how to push for health care their child needs. But also, how to read a state budget, how to talk to a state lawmaker and how to testify before the school board or city council.

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There are 5.2 million children with developmental disabilities in America. That's according to Sheryl Larson, of the Institute on Community Integration at the University of Minnesota and the senior researcher of an annual report on services for people with developmental disabilities.

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Partners in Policymaking is available not just in Minnesota. Currently, 29 states and the District of Columbia run classes. Since it started in 1987, the total number of graduates has grown to more than 27,000.

The graduates are the parents — almost always mothers — of a young child with a developmental disability. Or they're an adult with a disability. It's not unusual that a parent takes the class first, then the kid grows up and takes the class, too.

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Those are stories Colleen Wieck wants parents to tell. She started Partners in Policymaking in 1987. At a Senate hearing in Washington on cuts to Medicaid, Wieck watched a parent struggle to tell her story — and got the idea to train parents. "One story can make a difference," says Wieck, who runs the Minnesota Governor's Council on Developmental Disabilities, which sponsors the program. "And we teach people, you owe it to the world to tell your story. You have a story. You tell it. It could change public policy."

Jillian Nelson is the first person parents talk to when they call the Autism Society of Minnesota, often because their child just got a diagnosis of autism. "The underlying message that I always give people is, 'You're going to be okay. ... Your kid's life may be different than you ever imagined, but it's still going to be a good life and everything's going to be okay."

Nelson is an adult with autism.

Advocates, IEPs, and Placements

The Orlando Sentinel reports on the role of advocates in IEPs:

Advocates, who are not lawyers and do not need special certification, help parents learn what choices they have in their child's education. They sit in on school meetings to develop or change the Individualized Education Program legally required for each disabled child. Some advocates also help parents file due-process claims in state court when they think the law is being violated. 

Many, such as Orlando advocate Pam Lindemann started out advocating for their own children.

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Exact numbers of advocates are not available, but Kamleiter said they outnumber the about two dozen Florida attorneys who focus exclusively on special-education law.
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"I used to believe they're [school administrators] out to screw parents. That's not the case. It's the system," said Lindemann, whose daughter, now 15, has cerebral palsy. She said she wished parents didn't need the help, but "there's a huge need." Lindemann has also trained about 60 people to serve as advocates in the past three years.

One of her clients, Heidi Haines Handley, called Lindemann her "personal hero."
"If you have never been to an IEP meeting, you have no idea how intimidating that they can be, even for a very confident person," Handley said. "Everyone should have an advocate to go with them."

An Arizona case illustrates the importance of IEPs. The Verde Independent reports:

In December, following four days of hearings in October, Administrative Law Judge Eric Bryant ordered Cottonwood-Oak Creek School District to reimburse the parents of an autistic student $60,267 for private school tuition.

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In short, the judge found that C-OC failed to provide the student with a free appropriate public education (FAPE). The appropriate education is required by the Individuals with Disabilities Education Act (IDEA).

The judge's ruling was based primarily upon the district's failure to follow an Individual Education Program (IEP), which is required for each special education student. An IEP team makes decisions concerning the student's IEP. Changes are not supposed to be made to the IEP without the IEP team, and the student's parents, being involved in those changes.

The student enrolled in C-OC in August 2009. According to the Office of Administrative Hearings document, the student's IEP called for her to be in a self-contained classroom setting full-time with individual and small group instruction in functional academics. Instead, the district placed the student in a regular classroom with supports and some instruction from the special education teacher.