Broken Employment System

In The Politics of Autism, I write:

Many analyses of autism speak as if it were only a childhood ailment and assume that parents are the main stakeholders. But most children with autism grow up to be adults with autism, and they suffer uniquely high levels of social isolation. Almost 40 percent of youth with an autism spectrum disorder never get together with friends, and 50 percent of never receive phone calls from friends. These figures are higher than for peers with intellectual disability, emotional disturbance, or learning disability. When school ends, many adults with autism have grim prospects. Though evidence is sparse, it seems that most do not find full-time jobs. Compared with other people their age, they have higher rates of depression, anxiety, bipolar disorder, and suicide attempts.

Studies show that autism services can be complicated, creating difficulties for autistic people and their families. 

Anne Roux and Lindsay Shea have an article at Scientific American titled "A Broken Employment System Leaves Autistic Adults Stranded."

By our estimates, among autistic adults who likely needed job supports, only 1.1 percent received public employment services in 2016 through Medicaid or state vocational rehabilitation programs. These systems are among the only public employment support options for autistic individuals. They are a central focus of Employment First initiatives to bolster disability employment policy in U.S. states. Given deep cracks in the system that provides services for those with developmental disabilities, we suspect that 99 percent of autistic people who need these services are still without them in 2023.

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The federal government invests $15 billion annually in special education to supplement state and local funding, with the express goal of facilitating employment for people with disabilities. This investment is somehow expected to mature on its own; there is no mandated funding for services after high school. It can be difficult for autistic youth to qualify for adult employment services through vocational rehabilitation or Medicaid-funded home- and community-based services. Families must navigate a confusing array of service systems with no roadmap and no guarantees. Autistic youth with average intelligence are less likely to qualify for services, while those with greater needs may be deemed unemployable. It is no surprise, then, that 42 percent of autistic youth don’t have jobs during early adulthood.

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Policymakers have attempted to address these gaps. The Build Back Better Act included funds for ending deplorable wait lists for Medicaid home- and community-based services and increasing access to mental and behavioral health care. Reimbursement rates for services temporarily increased during the COVID pandemic. Ultimately, however, these remedies failed to pass or were discontinued.

The Two Faces of RFK Jr.

 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.

Antivaxxers are sometimes violent, often abusive, and always wrong. A leading anti-vaxxer is presidential candidate Robert F. Kennedy, Jr.  He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.

Sheera Frenkel at NYT:

In large public forums like Congress, Mr. Kennedy, 69, has moderated his extreme views, while continuing to advocate them in other settings. At campaign stops in Iowa, Vermont and Virginia this summer, he spoke about the environment, foreign policy and the war in Ukraine, according to The Times’s review. He did not mention vaccines and limited his comments on Covid to criticism of pandemic lockdowns.

Yet during that same period, Mr. Kennedy appeared on more than two dozen podcasts hosted by personalities popular with the right wing, such as Jordan Peterson and Joe Rogan, as well as in online meetings and video streams where he brought up a variety of fringe ideas. At times, he made unfounded claims about vaccines and questioned whether chemicals in the water supply were causing “sexual dysphoria” among children in the United States.

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In June, he told Mr. Peterson, a psychologist and an author, that chemicals in the water supply could turn children transgender. That same month, Mr. Kennedy appeared on Mr. Rogan’s podcast and presented false or unfounded claims, including that aluminum in vaccines causes autism and that Wi-Fi causes chronic illness.

Another Pastor Says Autism is Demonic

 In The Politics of Autism, I discuss various ideas about what causes the condition. Many posts have discussed the potential correlates, risk factors, and possible causes that have been the subject of serious studies.  Genetics tops the list.  One thing that is NOT on the list is demonic possession.  

Book-burning pastor Greg Locke has aired this nonsense.  Alas, he is not alone.

Brandon Cage at AlterNet:

Last Wednesday, Pastor Rick Morrow of Beulah Church in Richland, Missouri ignited fury when he asserted in a sermon that autism was the result of demonic forces corrupting children's minds.

"I know a minister who has seen lots of kids that are autistic, that he cast that demon out, and they were healed, and then he had to pray and their brain was rewired and they were fixed," Morrow said. "Yeah, I just went there. I mean, you can get online and see lots of examples of it. If it's not demonic, then we have to say God made them that way. Like, that's the only other explanation."

Morrow continued, 'Why [does] my kid have autism?' Well, either the devil's attacked them, he's brought this infirmity upon them, he's got them where he wants them, and/or God just doesn't like 'em very much and he made 'em that way. Well, my God doesn't make junk. God doesn't make mess-ups. God doesn't make people that way."

According to Hemant Mehta of Friendly Atheist, who helped Morrow's remarks receive public attention, "infuriated people in the community, some of whom have children with autism and have no trouble reconciling it with their faith." Mehta pointed out that the "sentiment was shared by many people who commented under the church's video on Facebook, with responses ranging from 'This whole congregation needs to run away' to 'I'm embarrassed this is in our community.'"

Autistic Adults, and Services for Mental Health and Employment

In The Politics of Autism, I write:

Many analyses of autism speak as if it were only a childhood ailment and assume that parents are the main stakeholders. But most children with autism grow up to be adults with autism, and they suffer uniquely high levels of social isolation. Almost 40 percent of youth with an autism spectrum disorder never get together with friends, and 50 percent of never receive phone calls from friends. These figures are higher than for peers with intellectual disability, emotional disturbance, or learning disability. When school ends, many adults with autism have grim prospects. Though evidence is sparse, it seems that most do not find full-time jobs. Compared with other people their age, they have higher rates of depression, anxiety, bipolar disorder, and suicide attempts.

Studies show that autism services can be complicated, creating difficulties for autistic people and their families. 

Dara V Chan and Julie D Doran have an article at Autism titled "Mental health counseling is rated as most helpful by autistic adults: Service perspectives in adulthood." Lay abstract:

The number of autistic adults is growing, but there are fewer services to support them in adulthood. Many autistic adults need some support services to lead successful adult lives. We know a lot about the services autistic adults use and some of the problems with using these services, but we do not know which services are most helpful to them and how the services they use relate to how they interact with their communities. Forty autistic adults took part in a study about service use and community participation. They completed surveys, interviews, and carried a global positioning system tracker. They answered questions about which services are most helpful in adulthood, things that make it hard to use services, and what services they needed. Most participants used two services in the past 2 years, most frequently mental health and employment services. Adults who were currently seeing a mental health counselor were more likely to be working full-time and visit more locations in the community compared to those who were not seeing a counselor. Mental health services were reported as the most helpful service they received as adults, followed by employment services. We often focus on the importance of employment services after high school, but our findings show a need for both mental health and employment services for autistic adults.

Bleak Assessment on Vaccination

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.

Antivaxxers are sometimes violent, often abusive, and always wrong.

Mark Christopher Navin and Katie Attwell at Time:

America’s immunization policies are facing a bleak future. Political polarization about vaccine policies is likely to cause outbreaks of previously controlled infectious diseases. If we cannot prevent these disasters, we should pivot our focus towards managing them.

Resistance to vaccination is not a new problem, but the COVID-19 pandemic exacerbated it. It should be clear by now that neither persuasion nor coercion is sufficient to change the minds or the behavior of people who are determined to refuse vaccines. Education and research cannot defeat coordinated misinformation. And government efforts—at federal, state, and local levels—are stymied by a combination of inadequate power, insufficient political will, and a lack of perceived legitimacy by vaccine refusers. One of America’s core lessons from the COVID-19 pandemic is that a heavy-handed response to vaccine refusal can make things worse. 

Many U.S. states have ended their COVID-19 vaccine mandates. But America’s childhood vaccine mandates for school entry are also vulnerable. As researchers of vaccination social science, ethics, and policy, we have sometimes encountered an optimistic view that immunization in America will soon snap back to a pre-pandemic “normal.” But this hope ignores the cracks that were already present in America’s immunization social order before the pandemic, cracks that COVID-19 only widened. State-based conflicts over school enrollment vaccine mandates became increasingly political and contentious during the 2010s. Continued political polarization about vaccine mandates is likely to reduce immunization rates and precipitate the return of previously controlled diseases. That’s why it’s time to adapt to vaccine refusal and prepare to manage these outbreaks, rather than hope they can be prevented.

HHS Proposed Rule to Protect People with Disabilities

In The Politics of Autism, I discuss the civil rights of people with autism and other disabilities. 

 A fact sheet from HHS:

The Department of Health and Human Services (HHS) has issued a proposed rule to advance equity and bolster protections for people with disabilities.  The proposed rule, Discrimination on the Basis of Disability in Health and Human Service Programs or Activities, updates, clarifies, and strengthens the implementing regulation for Section 504 of the Rehabilitation Act of 1973 (Section 504), the statute that prohibits discrimination against otherwise qualified individuals on the basis of disability in programs and activities that receive Federal financial assistance or are conducted by a Federal agency.

The historic proposed rule provides robust civil rights protections for people with disabilities in federally funded health and human services programs. It advances the promise of the Rehabilitation Act and helps to ensure that people with disabilities are not subjected to discrimination in any program or activity receiving funding from HHS just because they have a disability.  This proposed rulemaking is consistent with Section 504 statutory text, congressional intent, legal precedent, and the Biden-Harris Administration’s priority of advancing equity and civil rights and protecting Americans’ access to health care and human services programs and activities.    

While the Department is undertaking this rulemaking, the current regulation is in effect.  If you believe that you or another party has been discriminated against on the basis of disability, visit the Office for Civil Rights (OCR) portal at https://ocrportal.hhs.gov/ocr/smartscreen/main.jsf  to file a complaint online.

Summary of the Proposed Rule

Clarifies the application of Section 504 to several critical areas.

The proposed rule updates the current Section 504 regulations to clarify several crucial areas not explicitly addressed in that rule:

• Medical treatment.  This section addresses current pervasive discrimination on the basis of disability in accessing medical care, which leads to significant health disparities and poorer health outcomes for individuals with disabilities.  This pattern of discrimination can be found in a wide variety of contexts including organ transplantation, life-sustaining treatment, crisis standards of care that are triggered when resources are limited, and participation in clinical research.  The proposed rule ensures that medical treatment decisions by entities that receive Federal financial assistance from the Department (“recipients”) are not based on biases or stereotypes about individuals with disabilities, judgments that an individual will be a burden on others, or beliefs that the life of an individual with a disability has less value than the life of a person without a disability.
• Value assessment methods.  Value assessment methods can play an important role in determining whether a particular intervention such as a medicine or treatment will be provided and under what circumstances.  They are an increasingly significant tool for cost containment and quality improvement efforts.  Value assessment methods may discriminate against individuals with disabilities when they place a lower value on life-extension for individuals with disabilities when that method is used to limit access or deny aids, benefits, or services.  The proposed rule prohibits the discriminatory use of such methods.
• Child welfare programs and activities.  Children, parents, caregivers, foster parents, and prospective parents may encounter a wide range of discriminatory barriers when accessing critical child welfare programs and activities that are designed to protect children and strengthen families.  This section sets forth detailed requirements to ensure nondiscrimination in a wide variety of areas including parent-child visitation, reunification services, child removals and child placements, guardianship, parenting skills programs, foster and adoptive parent assessments, and in and out-of-home services.
• Web and mobile accessibility.  As technology becomes a more widespread way to deliver health and human services programs and activities, particularly through websites, applications, and self-service kiosks, it is vital to ensure that web content and mobile applications are readily accessible to and usable by individuals with disabilities.  The proposed rule defines what accessibility means for web and mobile applications and sets forth specific technical standards for compliance with Section 504, using the same standards in a recently proposed rule from the Department of Justice under Title II of the Americans with Disabilities Act.
• Accessible medical equipment.  People with disabilities continue to experience barriers to accessing medical care because of inaccessible medical equipment.  Barriers such as exam tables that are not height adjustable, mammography machines that require a person to stand, and weight scales that do not accommodate wheelchairs result in inequities and exclusion from basic health services for individuals with disabilities, contributing to poor health outcomes.  The proposed rule establishes enforceable standards for accessible medical diagnostic equipment, a significant and concrete step toward addressing health disparities experienced by people with disabilities.  It also requires that within two years of the rule’s effective date, recipients that use an examination table in their program or activity have at least one accessible exam table, and recipients that use a weight scale in their program or activity have at least one accessible weight scale.
• Integration.  The existing Section 504 regulation requires programs and activities to be administered in the most integrated setting appropriate to the  needs of the person with a disability.  The proposed rule incorporates language reflecting principles established through Supreme Court and other significant court decisions that require the provision of community-based services to persons with disabilities when such services are appropriate, the affected persons do not oppose community-based treatment, and the placement in a community setting can be reasonably accommodated.  The proposed rule will help recipients better understand and comply with their obligations under Section 504 and provide more detail about the right to be served in the most integrated setting appropriate for individuals with disabilities.

Training for Job Interviews

In The Politics of Autism, I discuss the employment of adults with autism and other developmental disabilities.

 SungWoo Kahng and colleagues have an article at The Journal of Applied Behavior Analysis titled An Individualized Approach to teaching adults with autism to successfully navigate job interviews via remote instruction.  The abstract:

Adults with autism spectrum disorder (ASD) experience challenges securing employment, which may partially explain overall underemployment or unemployment in this population. One of the first steps to obtaining employment is participating in a job interview. However, social communication deficits may interfere with an individual with ASD's participation in a job interview. The current study evaluated the use of behavioral skills training delivered via remote instruction to teach interview skills to seven adults with ASD. Results showed overall improvement during interviews as well as posttraining tests with a career development expert. These data suggest that an individualized approach to teaching may be an effective strategy to help adults with ASD successfully navigate job interviews.

California's Troubled Regional Centers

 In The Politics of Autism, I discuss services for people with disabilities.

Regional centers are private nonprofits that contract with California's Department of Developmental Services to coordinate or provide services for people with developmental disabilities. The 21 regional centers help disabled people and their families help find and access a variety of services.

Maggie Angst and Mathew Miranda at The Sacramento Bee:

 In California, responsibility for finding services for people like Max sits with the state’s 21 regional centers — a $14 billion network of publicly-funded, privately-operated nonprofits that coordinate support for about 400,000 children and adults with developmental or intellectual disabilities.

Source: https://datawrapper.dwcdn.net/ZP9q6/2/data.csv 

 Despite efforts to address the longstanding inequities, racial and ethnic gaps in service continue to widen. Latino clients make up the largest share of California’s Regional Center clients, yet per capita, they receive significantly less funding than other racial and ethnic groups. For every dollar spent on White clients, Latino clients on average receive 41 cents, according to the most recent data from the Department of Developmental Services, which oversees the centers. Latinos at Sacramento’s Alta Regional Center got about 43 cents per $1 for White clients in 2021-22 – a considerable dip from 62 cents in 2015-16.

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Many parents say they were forced to wait agonizing months or years to hear back about requests for certain services — a trend known as “denial by delay.” For some, it took upwards of eight to nine months just to get their child an initial assessment, which contradicts best practices around early intervention. Other parents reported being provided inaccurate information about costs or service eligibility. In too many cases, parents give up entirely, defeated by a bureaucratic maze they simply cannot navigate on their own.

The Pennsylvania Cliff

 In The Politics of Autism, I write:

When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. ... People in the disability community refer to this point in life as “the cliff.” Once autistic people go over the cliff, they have a hard time getting services such as job placement, vocational training, and assistive technology. IDEA entitles students to transition planning services during high school, but afterwards, they have to apply as adults and establish eligibility for state and federal help. One study found that 39 percent of young autistic adults received no service at all, and most of the rest got severely limited services.

From the Public Interest Law Center:

Pennsylvania’s students with disabilities can now receive a free and appropriate public education until they turn 22—a policy change that will provide months of additional support to young adults across the commonwealth at a crucial juncture in their lives. Today, as part of a settlement reached in a federal class action lawsuit, the Pennsylvania Department of Education (PDE) announced a change to their previous eligibility policy, which aged students out of special education services at the end of the school term in which they turned 21.

The policy change follows a lawsuit filed by A.P., a 19-year-old student with multiple disabilities, and his family. The case challenged PDE’s previous age out policy for failing to comply with the federal Individuals with Disabilities Education Act (IDEA), which guarantees students with disabilities the right to receive individualized support services until they either earn a regular high school diploma or turn 22. The Public Interest Law Center and Berney & Sang represented A.P. and his family in the case.

As part of the settlement, Pennsylvania updated its age-out policy—effective immediately—allowing eligible students with disabilities to continue to receive a free and appropriate public education until their 22nd birthday. The policy change also applies to eligible students who turned 21 during the 2022-23 school year and were prematurely exited from school under PDE’s old policy. These students will have the option to re-enroll in public school this school year.

The updated policy will have a significant impact for hundreds of students like A.P., who works with personal care assistants and receives occupational therapy, speech therapy, and transition services to help him prepare to successfully transition to adult life. His 21st birthday is in February 2025, and under the old policy, he would have lost access to these services in summer 2025 at the end of the school year. Now, under the new policy, he will be able to continue to receive services until his 22nd birthday in February 2026—more than six months later.

As part of the settlement, PDE has sent a letter to all families with 21-year-old students with disabilities who may be eligible to continue to receive services, and posted an FAQ on their website about the new policy. PDE has also sent a notice to the superintendents and special education directors of all school districts, charter schools, and intermediate units in Pennsylvania telling them to contact students and provide them with the option to re-enroll.

The Public Interest Law Center and Berney & Sang, attorneys representing A.P. and his family, released the following statement:

“The PA Department of Education’s new policy complies with federal law and allows students to receive the support they are entitled to until they turn 22. This is a significant step forward for young adults with disabilities in Pennsylvania. We commend PDE for acting promptly and meaningfully in response to our class action lawsuit, and we look forward to working with them to ensure that students with disabilities are able to receive the support they deserve to prepare for the next stage in their lives.”

Pushback Against Cuts in Indiana

The Politics of Autism includes an extensive discussion of insurance and Medicaid services.

Whitney Downard at Indiana Capital Chronicle:

A bipartisan group of lawmakers from both chambers sent a letter to Gov. Eric Holcomb earlier this week urging him to reconsider the proposed rate cuts for Applied Behavioral Analysis (ABA) therapy, a specialized form of treatment for autistic children.

The letter, authored by Shelbyville Republican Rep. Robb Greene, was signed by 13 senators and 29 representatives from across the state. Greene, a freshman legislator, shared the impact of ABA therapy on his young son. Rep. Robb Greene, R-Shelbyville (Photo from the House Republicans)

“When my son, RG, was diagnosed with (Autism Spectrum Disorder) at age 3, he was functionally non-verbal. At an age when many parents are experiencing the joy that accompanies each milestone, we were told that our son had the developmental parity of a nine-month-old,” Greene wrote in a statement.

“… Within 2 months (of ABA therapy), RG went from very few vocalizations to the start of meaningful exchanges with us, his peers and his therapy team. Within the first year, he acquired many necessary life skills, such as beginning and mastering potty training, efforts made toward dressing himself and learning coping mechanisms that enabled our family to socialize together in more public settings,” Greene continued.

Greene said RG’s current ability to communicate basic needs and advocate for himself wouldn’t have occurred without “intensive” ABA therapy. His son now attends kindergarten at the family’s local public school.

“Simply put, ABA saved my son’s life,” Greene said.

Medicaid ABA for Autistic Adults in Nevada

The Politics of Autism includes an extensive discussion of insurance and Medicaid services for adults with intellectual and developmental disabilities.

Tabitha Mueller at The Nevada Independent:

A need for access to lifelong autism treatment services is one of the reasons Sen. Heidi Seevers Gansert (R-Reno) sponsored and helped pass SB191 during the 2023 legislative session.

The measure expands the coverage age for Applied Behavior Analysis (ABA) therapy services for people with autism from 21 to 27 for those receiving Medicaid, a government-funded health insurance for low-income people and those with disabilities. Seevers Gansert said she introduced the legislation as a way to provide relief for families and individuals who faced losing coverage as they aged out.

“There was a cliff. The child would reach a certain age, and then there were really no services available unless someone could afford to do it out of pocket,” Seevers Gansert said. “And for the Medicaid population, they can't afford to do anything out of pocket.”

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 The little-noticed bill expanding coverage for ABA services passed unanimously out of both chambers of the Legislature in early June. Gov. Joe Lombardo signed it on June 13. 

The legislation is estimated to cost about $2.7 million over the next biennium, with $1.8 million coming from the federal government and the rest coming from state and local funds.

As of this year, under Medicaid, more than a thousand patients younger than 21 with autism receive ABA services in Nevada. 

Seevers Gansert estimates that the new legislation will help expand coverage for ABA services to nearly 130 adult patients on Medicaid, according to information provided by the state. Officials with Nevada Medicaid also said the law could lead to continued care and improved health outcomes for those with autism spectrum disorder and potential savings for out-of-pocket expenses.

But some of these numbers could be affected by statewide shortages of ABA providers and the high cost of treatment — two factors that Board Certified Behavior Analyst Molly Halligan knows first-hand.

ADA Enforcement as Campaign Issue

In The Politics of Autism, I discuss the civil rights of people with autism and other disabilities. 

Andrew Pulrang at Forbes:

ADA enforcement and efforts to weaken the law have been important disability issues since the law passed in 1990. The latest threat is Acheson Hotels v. Laufer, a Supreme Court case about whether disability advocates should be allowed to sue businesses for ADA violations even if they haven’t personally visited them. Disability organizations are again sounding the alarm and have submitted detailed amicus briefs advocating a broad interpretation of who can help enforce the ADA – a law which was deliberately crafted to depend on citizen enforcement more than on government oversight.

If the Supreme Court weakens the ADA, what policy changes would politicians support to remedy the situation? And how would presidential candidates weigh potential court nominees’ positions on the ADA and other disability rights laws? Would they appoint justices who would defend disability rights, or weaken them?

Proposed IN Medicaid Limits

The Politics of Autism includes an extensive discussion of insurance and Medicaid services for adults with intellectual and developmental disabilities.

Shari Rudavsky and Kayla Dwyer, Indianapolis Star

 To contain costs, the Families and Social Services Administration, which oversees Medicaid, is proposing standardizing rates for the therapy at a level that many providers worry could threaten their ability to continue providing these services. FSSA disputes this, saying the rate they came up with is based on providers' own cost data. That's true, but FSSA is proposing rates at the low end of a wide scale.

Currently, the hourly reimbursement providers receive from the state varies from $46 an hour to five times that. The average is $91 an hour.

Now the state is proposing instituting a flat rate of $55 an hour for the most common form of therapy ― meaning, in comparison to what the providers have been accustomed to receiving, a small handful of providers would get a bump, but most would experience a dramatic decrease.

Providers, too, agree that there needs to be a standardized rate. But choosing $55, as FSSA is proposing, goes too far, too quickly, they argue.

"I definitely think there’s some middle ground, but what we're experiencing now, if these in-center ABA therapy centers are to close, they (the children) are going to be pushed into the school system that’s already overwhelmed," said Hillori Wanninger, a board certified behavior analyst with Shine Pediatric Therapy. "This is a very rippling effect."