Generosity of Mandates and the Autism Workforce

The Politics of Autism includes an extensive discussion of insurance and explains the limits of insurance mandates:

There are no exact figures available, but suppose that we take the total number of autistic people and subtract the following:

• Those in states without mandates;
• Those who live in states with mandates but are under exempt, self-funded plans;
• Those with individual and small group policies to which post-2011 mandates do not apply, and
• Those who have already gone over the various limits and caps.

Ryan K. McBain and colleagues have an article at Autism titled "Generosity of State Insurance Mandates and Growth in the Workforce for Autism Spectrum Disorder."

The lay abstract:

To improve access to health services for children with autism spectrum disorder, US states have passed laws requiring health insurers to cover autism-related care, commonly known as state insurance mandates. However, the features of mandates differ across states, with some state laws containing very generous provisions and others containing very restrictive provisions such as whether the mandates include children aged above 12 years, whether there is a limit on spending, and whether there are restrictions on the types of services covered. This study examined the relationship between generosity of mandates and growth in the health workforce between 2003 and 2017, a period during which 44 states passed mandates. We found that states that enacted more generous mandates experienced significantly more growth in board-certified behavioral analysts who provide behavioral therapy as well as more growth in child psychiatrists. We did not find differences in the growth of pediatricians, which is a less specialized segment of the workforce. Our findings were consistent across eight different mandate features and suggest that the content of legislation may be as important as whether or not legislation has been passed in terms of encouraging growth in the supply of services for children with autism spectrum disorder.

Reforming Credentialing in CA Special Ed

In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act.

Carolyn Jones at EdSource:

Last month, the California Commission on Teacher Credentialing approved the latest in more than a dozen changes to the requirements for credentialing aspiring special education teachers.

With a focus on co-teaching and collaboration between special education and their general education colleagues, the changes are intended to boost achievement among students of all abilities.
...

Even though the landmark federal Individuals with Disabilities Education Act, approved by Congress 45 years ago, requires special education students to be taught in general education classes — or “mainstreamed” — whenever feasible, that has not happened to the extent that backers of the law envisioned.

  ...

According to the Learning Policy Institute, only 13% of students in special education met or exceeded the state’s math standards in 2018-19, compared to 43% of their peers, even though the majority of students in special education have conditions such as dyslexia, epilepsy, deafness or speech impairments that don’t affect their cognitive abilities.

...

The new standards, slated to go into effect in 2022, are part of a series of changes the credentialing commission launched in February 2018 in the requirements to earn the “education specialist” credential needed to teach special education students. Once implemented, these reforms would cap more than five years of work by the commission.

A primary goal of the new standards is to improve working conditions for special education teachers, who have among the highest turnover rates in education. More than 20% of special education teachers in California quit over the course of a single year (between 2015-16 and 2016-17), according to a recent report by the Learning Policy Institute.

The Health of Autistic People

The Politics of Autism discusses health care, and explains that autism services can be complicated, creating difficulties for autistic people and their families. 

From Drexel University:

In the recently published sixth report in the National Autism Indicators Report series, researchers from Drexel University’s A.J. Drexel Autism Institute highlight a holistic picture of what health and health care look like across the life course for people on the autism spectrum.

...

Researchers found when parents were asked about whether their child had certain health conditions, children with ASD had higher rates of every single condition except for asthma, compared to other children with special health care needs. Conditions included learning disability, behavior or conduct problems, attention deficit hyperactivity disorder (ADHD), speech or language disorder and anxiety.

Similarly, in another set of data, adults with ASD had higher rates of many conditions than a random sample of other adults. Adults with ASD were two to three times as likely to have depression or anxiety, compared to adults without ASD and were also far more likely to have hypertension, epilepsy, ADHD, bipolar disorder or schizophrenia.

When it comes to paying for the health care, almost half (46%) of parents of children with ASD reported that their child’s insurance did not always cover the services they needed. One-fifth of parents of children with ASD reported avoiding changing jobs because of concerns about maintaining health insurance for their child – five times the rate of parents of children with no special health care needs.

Because of the complexity of care, parents either sought help or felt they needed more help with coordinating health care. Of parents whose child with ASD had more than one health care appointment in the past 12 months, 28% reported someone helped coordinate or arrange care among different providers, similar to parents of children with other special health care needs. Another 30% of parents of children with ASD reported they could use more help coordinating care – more than parents of other children with special health care needs.

Survey on Vaccines and COVID

 

 In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.   And among those diseases could be COVID-19.

Kathy Frankovic at YouGov:

The survey put several vaccine theories to Americans. The idea that vaccines cause autism isn’t bought by 81% of Americans. Likewise, 87% say COVID-19 is not a hoax. However, fewer – 59% – reject the idea that the threat of coronavirus has been exaggerated for political reasons. These are much the same results as in March, at the start of the pandemic.

Belief in all three of conspiracy theories is higher among Republicans than Democrats, though the link to autism shows the smallest partisan difference. Believing any of these statements makes one less likely to be willing to get vaccinated. Only a third of those who believe the threat of coronavirus has been exaggerated say they will get vaccinated, just over one in five who say the coronavirus is a hoax will get vaccinated, and even fewer of those who believe vaccines cause autism would.

Air Travel and Hidden Disabilities

 In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  One challenge is that autism is an "invisible disability," which does not have obvious physical markers.  

Kerri Westenberg at the Minneapolis Star Tribune

The Hidden Disabilities Sunflower program, which is designed to ease travel for people with disabilities, has arrived at Minneapolis-St. Paul International Airport.

The program got its start at London's Gatwick Airport in 2016.

Travelers at MSP can now pick up a sunflower lanyard, which indicates to airport staff that the person may need assistance or extra time to navigate the airport.

...

The sunflower lanyard signals that someone may need more help for a host of reasons, including low vision, hearing loss, autism and post-traumatic stress disorder. Passengers should still arrange for assistance with their airlines if disability services are needed.

The Hidden Disabilities Sunflower program has grown across Europe and is now in nearly 10 U.S. airports including Orlando, Miami, Seattle, San Jose and New York-JFK.

Autism and COVID in Guam

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Those challenges get far more intense during disasters.  And coronavirus is proving to be the biggest disaster of all. Providing education and social services is proving to be very difficult. 

 John O'Connor at the Guam Daily Post:

With Guam schools still closed over COVID-19 concerns, many parents have had to double as teachers, even if only to help with online learning or hard copy lessons. It has been a somewhat traumatic experience, Abigail Ogo said.

"I even got myself a lesson planner. With that it helps me with the kids and the boys and their lessons every day, just so I don't go insane with where I start," she said.

But in addition to home schooling, the mother of five is also one of many parents on island navigating the pandemic with the unique challenge of raising a child with autism.

There are 244 children within the Guam Department of Education with autism, but that represents only public school students. Josephine Blas, president of Guam Autism Community Together, estimates there might be around 500 children with autism on island.

Navigators

 In The Politics of Autism, I discuss the difficulties facing families of newly-diagnosed children.

Kris Pizur-Barnekow, Amy C Lang, Brian Barger  have a short report at Autism titled "Development and Utility of the Family-Centered Autism Navigation Interview." 

From the report:

 Family navigators (FNs) are professionals with lived experience of having a child with ASD or special healthcare needs who engage families to enhance access to early identification and intervention services. Emerging research describes important components of family navigation (Feinberg et al., 2016) and shows FNs increase service initiation and ongoing engagement (Feinberg et al., 2016). However, research on the development of family navigation interventions primarily focuses on FN training with less attention paid to the protocols and products used by FNs to facilitate or enhance the family navigation process.

 Feinberg, E., Abufhele, M., Sandler, J., Augustyn, M., Cabral, H., Chen, N., Linhart, Y. D., Levesque, Z. C., Aebi, M., & Silverstein, M. (2016). Reducing disparities in timely autism diagnosis through family navigation: Results from a randomized pilot trial. Psychiatric Services, 67(8), 912– 915. https://doi.org/10.1176/appi.ps.201500162

The lay abstract:

When a parent learns of their child’s autism diagnosis, they may be overwhelmed, confused, and frustrated. Family navigation services are designed to improve access to care. While these services are a promising intervention to enhance well-being and developmental outcomes, there are limited tools that can systematically facilitate the development of a shared navigation plan that prioritizes the concerns of the family. The Family-Centered Autism Navigation semi-structured interview guide is designed for family navigators to triage and prioritize caregiver’s needs to coordinate and navigate systems of care after learning of their child’s autism spectrum disorder diagnosis. The goals of the Family-Centered Autism Navigation interview are to (1) identify family and child strengths; (2) identify family/caregiver concerns regarding navigation of services and systems following their child’s diagnosis of autism; (3) measure change in caregiver knowledge, ability and skill as it relates to understanding, remembering, and evaluating information they receive; and (4) assist with the development of a shared navigation plan. When using the Family-Centered Autism Navigation guide, family navigators and caregivers co-create a family-centered, prioritized action plan that supports and prepares caregivers as they navigate systems of care. This short report describes the development process of the Family-Centered Autism Navigation semi-structured interview guide. We utilized brief interviews (n = 42), expert feedback (n = 13), and quality improvement strategies (n = 2 family navigators) to develop the questions and determine the usability of the Family-Centered Autism Navigation interview in practice.