Autism and Family Court

In The Politics of Autism, I discuss interactions between the justice system and autistic people.

Kelly C. Wall and Karen Markle write at The Legal Intelligencer:

In high-conflict cases with ASD children, like divorces or custody disputes, it is common that the parents do not want to cooperate with each other and refuse to identify a lead parent (a decision maker) on how to raise the child. This parent is more likely to coordinate special services for the child, doctors' appointments, transportation and therapy. The court will want to know who this decision maker is, which parent has the most stable household and which parent can provide consistency. Conflict occurs when the parents cannot agree on a plan for a number of issues for their child. These include, but are not limited to: discipline, therapeutic treatments and frequency, medication and dosage, diets, education (traditional classrooms or special needs classes) and routines (how often is the child switching between homes and parents).
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Regardless of the role the attorney is playing, the attorney's representation is all encompassing and he or she has a duty to present a complete record, which will require knowledge of the ASD child's needs. As a representative of the client, it is incumbent upon the lawyer to understand all of these issues so that he or she can elicit this information during testimony and prepare the client to answer these questions. In complex cases, the lawyer can seek expert advice or interview the child's service providers for a better understanding of the child's need.

Hill Days

In The Politics of Autism, I discuss Medicaid services for people with intellectual and developmental disabilities, as well as other government programs at the federal and state levels.

Christina Samuels reports at Education Week:

Special educators are fanning out across Capitol Hill Tuesday, spreading a few targeted messages for Washington lawmakers: Congress should pass a budget that allocates more money to special education and gifted education, oppose efforts to divert public money to private school vouchers, and fight any bill that would cut Medicaid coverage for children's health services.

So-called "Hill days" are a tradition for advocacy groups of all types. But members the Council of Exceptional Children and the Council of Administrators of Special Education, who have joined together this year for a "special education legislative summit," report feeling particular pressure to get their points across.

"I am feeling a huge sense of urgency," said Tara Rinehart, the director of special services for the Wayne Township in Indianapolis, a 16,200-student urban district. She met with her superintendent before making the trip to hammer out talking points to share with Indiana's congressional delegation—one of which was to preserve Medicaid.

The district, like many others, uses Medicaid funds to provide services to children with disabilities who are eligible for the program. But the program has a broader reach for her student body, she said: About 55 percent of the children in the district rely on the program.

Paul Zinni, the superintendent of the 700-student Avon, Mass., district, said one of his goals is a perennial one for special educators—getting a larger federal investment in special education. And he's also worried about school choice provisions that might leave a difficult-to-fill hole in his budget.

Best NYC School Districts

In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act.  Autism parents have a surprisingly hard time finding out what schools are best for autistic children.  Why? IEPs are confidential.  Therefore special ed parents have a hard time identifying and reaching one another.  There are other organizational barriers as well:

First, parents might be leery of drawing public attention to their children's disabilities. In the case of high-functioning autism, the other kids will probably notice a difference without necessarily knowing the label.  Once the label is public, however, the child might be subject to more bullying.

Second, special ed parents might be reluctant to share information with one another.  Those who get a "good" IEP might worry that others will want the same deal and create a "run on the bank."

Third, organizing takes time, which is one thing that the parents of autistic kids and other special-needs students do not have.

Fourth, special needs are diverse.  The things that paraplegic kids need (e.g., wheelchair ramps) are totally different from autistic kids need (aides, communications devices).  A dollar that goes to one need is a dollar not available to another.  Even within the autism spectrum, there are diverse needs that might make it hard for parents to form a community of interest.

In this light, this blog post about the 7 Best School Districts in New York City for Autism is most unusual.

If you want to make sure that you will have plenty of schools which offer programs for children with autism in your district, take a look at this list of the best school districts in New York City for autism. New York City is divided into five boroughs and 32 geographic districts. Each district has its own superintendent and receives guidance from a council made up of parents and local representatives. There are around 750 attendance zones and families with children often choose where to buy an apartment according to desirable zones and districts. Clara Hemphill, the editor of a website Inside Schoolswhich provides details and statistics on every public school in New York City, stated that there was an enrollment boom in the most desirable school districts such as District 15 and District 2 and it declined in undesirable districts such as District 5 and District 16. Anyhow, New York City is generally a great place for children with special needs, including those with autism spectrum disorder. There are many great summer camps in the area and you can see the ones we recommend on our list of 10 best summer camps in New York for children with special needs.

Excellent Description of Autism Uncertainty

Uncertainty is a major theme of The Politics of Autism. Here is how I start chapter 3:

If we can land a man on the moon, why can’t we cure autism? Frustrated parents may ask that question, remembering that when John F. Kennedy committed the United States to go to the moon, NASA scientists and engineers figured out how to get there. Ever since Neil Armstrong stepped off the lunar module in 1969, politicians have held up the Apollo project as a model for solving all kinds of problems. But autism is not rocket science. Contrary to the usual meaning of that expression, I hardly suggest that autism science is simple; rather, it is more puzzling than rocket science.

When the moon program was getting under way, there was consensus about the fundamental terms and facts. Although the engineering details were challenging, the basic math and physics behind the mission dated back to Isaac Newton. Autism is different. As we have already seen, it is a contested concept with many uncertainties. Just picture an Apollo program in which experts saw different kinds of moons in different parts of the sky and were not quite sure about the laws of motion.

At The Guardian, David Mitchell (translator of The Reason I Jump) writes:

The road to understanding autism is unfinished, zigzagging and punctuated by speed bumps, the first of which is the question that transformed my life as a dad in 2008: “What is autism, anyway?” My son was three years old when he was diagnosed, but autism resists definition, vigorously. Google Down’s syndrome or Parkinson’s disease, and you’ll get a broadly agreed-upon set of causes and criteria. Google “autism”, and you get a can of worms, a minefield, academic papers and a shouting match.

Pro-Vaccine Doctor to Head CDC

In The Politics of Autism, I look at the discredited notion that vaccines cause autism

Brad Reed reports at Raw Story:

The Trump administration on Friday announced that it was appointing Brenda Fitzgerald, who has served as Georgia’s Public Health Commissioner since 2011, to be the new director of the Centers for Disease Control and Prevention. 

While Fitzgerald is widely respected in public health circles, she is highly controversial among a certain segment of President Donald Trump’s base: Anti-vaccination activists who had previously been encouraged by Trump’s public denunciations of mandatory vaccination programs. 

Jake Crosby, who runs the Autism Investigated anti-vaccination website, warned Trump last week that he would be betraying his anti-vaxxer supporters if he appointed Fitzgerald to head CDC. 

In particular, Crosby pointed out that Fitzgerald recently wrote that all studies that have purportedly linked childhood vaccinations with autism had been “debunked.”

Medicaid Cuts Hurt Kids with Disabilities

In The Politics of Autism, I discuss health care issues and state Medicaid services for people with intellectual and developmental disabilities.

Stacy E. Wilson, president of the Children’s Hospital Association of Texas, writes at The Austin American-Statesman:

In 1965, the federal government made a promise to children with disabilities and from low-income families: They would have health coverage. In 2017, the federal government is about to break that promise. The Better Care Reconciliation Act of 2017 jeopardizes children’s access to health care because it no longer guarantees health coverage through the Medicaid program. Instead, the bill caps the federal government’s funding for children’s health care, leaving innocent children, who cannot control what family they are born into or what ailments they are born with, at the mercy of appropriators.

While the bill does take some positive steps toward protecting children, including exempting children with disabilities from per capita caps, those children are still at risk. Once the federal government limits Medicaid funding, states will need to make up the difference or limit the services or the number of Medicaid enrollees to stay under the federal cap. And they are likely to do this through across-the-board cuts, which will affect all Medicaid enrollees, including children with disabilities.

Employment, Unemployment, Disability

In The Politics of Autism, I discuss the employment of adults with autism and other developmental disabilities. Many posts have discussed programs to provide them with training and experience. 

From the US Department of Labor:

In 2016, 17.9 percent of persons with a disability were employed, the U.S. Bureau of Labor Statistics reported today. In contrast, the employment-population ratio for those without a disability was 65.3 percent. The employment-population ratio for both persons with and without a disability increased from 2015 to 2016 (by 0.4 percentage point for persons with a disability and by 0.3 percentage point for persons with no disability). The unemployment rate for persons with a disability, at 10.5 percent, was little changed from the previous year, while the rate for those without a disability declined to 4.6 percent. The data on persons with a disability are collected as part of the Current Population Survey (CPS), a monthly sample survey of about 60,000 households that provides statistics on employment and unemployment in the United States. The collection of data on persons with a disability is sponsored by the Department of Labor's Office of Disability Employment Policy. For more information, see the Technical Note in this news release.

Highlights from the 2016 data: 

--Nearly half of all persons with a disability were age 65 and over, about three times larger than the share of those with no disability. (See table 1.)

--For all age groups, the employment-population ratio was much lower for persons with a disability than for those with no disability. (See table 1.) 

--For all educational attainment groups, jobless rates for persons with a disability were higher than those for persons without a disability. (See table 1.) 

--In 2016, 34 percent of workers with a disability were employed part time, compared with 18 percent for those with no disability. (See table 2.) 

--Employed persons with a disability were more likely to be self-employed than those with no disability. (See table 4.)

Autism Conference in Tennessee

In The Politics of Autism, I discuss the employment of adults with autism and other developmental disabilities. Many posts have discussed programs to provide them with training and experience. 

The Chattanoogan reports:

Scott Kramer, an autistic adult and program director of the GCA Centre for Adult Autism (Centre), will be launching the first adult autism conference east of the Mississippi River. The Inaugural Tri-State Adult Autism Symposium Conference is the first autism conference east of the Mississippi to focus fully on adult autism themes (employment, independent living, social relationships, health and wellness, and research). The conference will be taking place on Saturday, July 22, in Chattanooga at Red Bank Baptist Church, 4000 Dayton Blvd.

Mr. Kramer talked with about 25 executive directors in the disability community from Tennessee, Georgia, and Alabama. "The overwhelming responses that the directors gave convinced me that I had found a 'gold mine of an opportunity' to reach out to the adult autism community in those three states." Formed with the idea of building community, Mr. Kramer recognized the need for this type of conference. "Countless numbers of autistic adults never had their social needs met in childhood, so those needs exist to this day. What this conference does is have social networking events take place the day before and day of the conference. By doing so, the social needs of these individuals can be better met."

"Approximately one to one and a half percent of this country's population is autistic. According to the U.S. Census Bureau in 2015, just over 77 percent of the country's population is at least 18 years of age. With a population of just 22 million people in the states of Tennessee, Georgia, and Alabama, roughly 190,000 autistic adults live in the area that the conference is focusing to serve," officials said.

For more information, contact Scott Kramer at 423-598-9516 or by email at Scott.Kramer@chattanoogaautismcenter.org 

Diagnosis and Frustration

In The Politics of Autism, I discuss evaluation and diagnosis of young children.

At The San Diego Union-Tribune, Bradley J. Fikes writes of the Samo family, which experienced frustration in getting an autism diagnosis for their son.

The Samos are fortunate to live in San Diego, which has strong programs to detect and treat autism and other neurological conditions. These include programs offered by University of California San Diego at its Autism Center of Excellence, at https://autism-center.ucsd.edu, and Autism Society San Diego at www.autismsocietysandiego.org. The San Diego Regional Center, at http://sdrc.org, helps individuals with a variety of developmental disabilities.

Dayna Hoff knows the Samo family’s frustration first-hand. She and husband Todd Hoff created San Diego-based Autism Tree Project Foundation in 2003 after their son Garret was diagnosed with autism. Garret was diagnosed at two years and nine months, and getting that diagnosis took nine months, Dayna Hoff said. After receiving therapy Garret, now 17, is doing well.

“It’s really disappointing to me to hear that this has happened, but it’s not surprising, because that’s why the foundation even exists,” said Hoff, the foundation’s volunteer executive director.

Pediatricians are more responsive than before, Hoff said. However, Hoff said they are at a disadvantage in detecting developmental delays. They simply don’t see the children enough to have a comprehensive understanding of their development. They usually see children when they’re sick.

In 2005 Autism Tree started a free preschool screening program to identify children at risk of developmental delays, including autism. Children found to be at risk are referred to specialists for a definitive diagnosis. The program works with preschools in San Diego and the San Francisco Bay Area. Go to j.mp/preschoolaut for more information.

“Every preschool director I’ve ever met, and teachers, have an absolute sense of urgency when they see that a child isn't meeting a developmental milestone,” Hoff said. “It really pops out to them when a child isn't meeting a milestone because there's all these other children right next to them.”

Go to www.autismtreeproject.org for more information on the foundation’s services.

Ernst and Young and Neurodiversity

In The Politics of Autism, I discuss the employment of adults with autism and other developmental disabilities. Many posts have discussed programs to provide them with training and experience. 

Olga Khazan writes at The Atlantic about Ernst and Young:

[Hiren] Shukla leads EY’s neurodiversity program, a small—at least for now—initiative by the firm to recruit and hire people on the spectrum to work on data-heavy tasks like process improvement and cybersecurity. Instead of checking for a firm handshake and can-do smile during an hourlong meeting, EY takes these job candidates through a two-week process that combines virtual interaction and an in-house “superweek” of team building and skills assessment. During that week, EY tries to acclimate the individuals to the office environment. Those who “pass” get job offers.

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The challenges to growing the program have been in finding the right people, Shukla says—the company works with university offices of disability and vocational rehab agencies to recruit potential new employees. People with autism are often un- or under-employed, even in their 20s. Those who do have jobs might be stuck in roles like stocking shelves or filing, which spare them human interaction but also don’t utilize their intellect.

Neurodiverse employees bring unique skills to the job, Shukla said, like blunt honesty. When the company on-boards one of its 50,000 new employees each year, it sends the new hire instructions to set up their voicemail. “One of the [neurodiverse] individuals said, ‘The instructions are not correct,’” Shukla said. “We didn’t believe it, we said, ‘We give it out all the time to people.’”

But he was right. Thousands of employees, feeling hesitant to say anything, had been wasting time puzzling over the wrong instructions.

People on the spectrum also often have superior problem-solving and hyper-focusabilities, so they excel at finding signals in noisy data.

Medicaid Cuts Would Hurt Disabled Kids in Kansas

In The Politics of Autism, I discuss health care issues and state Medicaid services for people with intellectual and developmental disabilities.

At The Lawrence Journal-World, Peter Hancock reports on the potential impact of Medicaid cuts on Kansas, using the case study of a disabled child named Franklin Fergus.

Statewide, public schools in Kansas receive more than $46 million a year in Medicaid funds to provide those kinds of services to children in a school setting. The Lawrence school district alone receives more than $700,000 in Medicaid reimbursements.

Under standard Medicaid rules, children with severe disabilities like Franklin’s are entitled to receive medical care in an institutional setting such as a nursing home or state hospital.

However, Kansas and most other states operate programs known as “Home and Community Based Services” that allow a limited number of people to avoid institutions and remain in their homes by using Medicaid money to pay for non-medical services, such as the care Franklin receives at home from Govier, and the different kinds of therapy he receives at school.

Jane Fergus said that in his first year of life, the cost of Franklin's care exceeded $3 million. To this day, he requires ongoing medical care, including monthly visits to a children's hospital in Cincinnati where he undergoes an experimental form of chemotherapy — treatment that the Fergus family could never afford on their own.

Jane Fergus' husband, Fred Fergus, works as a teacher at West Middle School in Lawrence. But Jane does only occasional, part-time house cleaning work while spending virtually all of her available time helping to care for Franklin.

What concerns her most about the current health care debate, she said, is that those programs, known as HCBS waivers, are optional services under Medicaid, and thus they could be the first to be cut or eliminated if there are major cuts to Medicaid, which both the House and Senate health care plans propose to do.

Special education services, on the other hand, are not optional. Public schools in the United States are required to provide those services to students in their districts under a separate law, the Individuals with Disabilities in Education Act, or IDEA.

“They’re either going to cut (Medicaid) services or they’re going to cut enrollees,” Fergus said. “They’re going to have to cut something to make it work. All of that’s going to fall back on the states to cover that shortage.”

The Anti-Vax Movement and the Nation of Islam

In The Politics of Autism, I look at the discredited notion that vaccines cause autism.

Previous posts have noted RFK, Jr';s antivax partnership with Farrakhan's Nation of Islam.

At Jezebel, Anna Merlan reports:

In the summer of 2015, Kennedy enlisted the help of the Nation of Islam, a black separatist organization, in his years-long campaign to convince Americans that vaccines cause autism. According to several reports, Kennedy wanted to encourage black families to consider not vaccinating their children, based on a debunked claim that a mercury-based preservative in vaccines causes autism. At the time, Kennedy was trying to stop SB 277, a California bill which eliminated a personal-belief exemption that some parents had used to avoid vaccinating their kids. In April, in promoting an anti-vaccine movie called Trace Amounts, Kennedy referred to vaccine injuries as “a holocaust.”

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[The] Nation of Islam has been anti-vaccine for decades, a skepticism that’s part of a broader distrust of the medical establishment. In the 1960s, according to Farrakhan, the NOI’s most influential leader Elijah Muhammad told his followers not to get the polio vaccine, but said others were acceptable. In 2004, a story in their official newspaper, the Final Call, suggested that vaccines could be linked to health problems from autism to diabetes. By 2013, Farrakhan was claiming children in Zimbabwe were being intentionally poisoned with vaccines from Europe and the U.S., “to limit the population of Black people in those countries and places in the world where America’s needs for their vital minerals and resources were deemed necessary.” (The idea that medicines are part of an effort to poison black people has a lot of traction in the NOI: In his 1965 book A Message to the Blackman in America, Elijah Muhammad said birth control was also a depopulation scheme and a “death plan.”)

The infamous conspiracy site InfoWars has also promoted the bogus theory that vaccines cause autism. 

Autism, Medicaid, and Delaware

In The Politics of Autism, I discuss health care issues and state Medicaid services for people with intellectual and developmental disabilities. Mitch McConnell has postponed the Senate vote on Trumpcare.  One reason for the bill's extreme unpopularity is its impact on Medicaid.

James Morrison reports at Delaware Public Media:

Sen. Tom Carper visited an autism services center in Lewes Friday to discuss how a Senate Republican healthcare plan would impact that organization’s programs.

Carper said the GOP’s proposed cuts to Medicaid could end some of the programs at Autism Delaware that train adults with autism to enter the workforce.

“These programs give adults with autism the skills to earn jobs and create a little bit of of a savings and be a contributing citizen to our society," he said.

It’s estimated the Republican-backed Better Care Reconciliation Act would cut Medicaid funding in Delaware by at least $2 billion over 10 years.