Unanticipated Consequences: Insurance, Private Equity, and ABA

The Politics of Autism includes an extensive discussion of autism service providers.  Since the book's publication, a big change has consisted of a massive increase in private equity investments.

The law of unanticipated consequences is at work.

Erica Fry at Fortune:.

[State-mandated nsurance coverage] has revolutionized access to autism services in America, making early intervention affordable for families. The shift, reflected in a recent CDC-led analysis, is striking: Per-child spending by employer-sponsored health insurance plans on young children with ASD increased 51% between 2011 and 2017 (over the same period, spending increased just 8% for kids with no ASD diagnosis). Annual per-child spending on intensive behavioral therapy, i.e. ABA, increased 376% in that period, from $1,746 per child to $8,317 per child; for 14.4% of kids with ASD, spending on that therapy in 2017 exceeded $20,000.bers suggest, insurance reform turned ABA into a big business. The mandates unleashed a gold rush, with large investors working to consolidate the fragmented provider landscape and build up regional platform companies specializing in the expensive, time-consuming therapy. “It’s like vultures now,” says Michi Medley, an Oklahoma-based family advocate and autism professional. “All these companies are coming in, and there’s so many of them, families don’t know who’s who.”

Between 2012 and 2021, the Braff Group, a health care M&A Advisory firm, identified 223 deals done in this sector. Nearly 90% of transactions over the past five years have involved private equity, according to the firm’s proprietary analysis; what Braff calls the most “frenzied” period, from 2017 to 2019, was characterized by PE firms buying up ABA providers at 10 to 15 times their annual profits: Big names like Blackstone, KKR, TPG, and Cerberus have all made investments in the space. One of the Braff Group publications compared investor enthusiasm for autism services to that of “fan boys to the latest Star Wars release.”

...

Lorri Unumb, the parent advocate who now serves as CEO of the Council of Autism Service Providers (CASP), remembers being dumbfounded when an industry investor boasted that his company hired a supervising therapist for every 40-50 patients (10-15 is the industry standard). Having been so involved in the advocacy that created the industry’s funding stream, Unumb now feels responsible to ensure quality in the industry. “These kids don’t get a do over,” she says. “You can’t just put a shoddy program out there and waste these children’s most important window to change the trajectory of their lives.”

Another urgent question is whether the autism-therapy workforce is trained and equipped to deliver effective care. The ABA industry heavily relies on two categories of workers: Board Certified Behavior Analysts (BCBAs)—the graduate level professionals who design and oversee a child’s ABA program—and Registered Behavior Technicians (RBTs), the industry workhorses who implement the therapy and work with autistic children many hours a day. RBTs, who are sometimes called ABA therapists, get 40 hours of training for the job, and are supposed to be supervised for 5% of their hours.

In general, the workforce is very young and inexperienced. As of July 2022, there were 57,000 BCBAs in the country, up from 20,000 in 2015, along with 120,000 RBTs, all of whom have been certified since 2014 when a professional certification program was created.

The varied readiness and competence of this workforce worries Erick Dubuque, director of the Autism Commission on Quality, a non-profit accreditation body for organizations offering ABA services. “We have a real serious issue with our training programs,” he told me, explaining that many programs get away with offering the “bare minimum,” despite the vulnerability of the population workers will be serving, because of high demand in the field. In a 2020 study, Dubuque and colleagues identified more than 20,000 additional providers that claim a BCBA credential but don’t actually have one. Individuals who work in the field and spoke with Fortune shared concerns about feeling ill-equipped for the job, which sometimes involves managing difficult situations where they might be kicked, hit, or bitten by a combative child. Others commented on a lack of professionalism among their colleagues, sharing stories in which therapists made fun of their clients’ autistic behaviors.

 

Dingell and Fitzpatrick Co-Chair Bipartisan Disabilities Caucus

In The Politics of Autism, I discuss the congressional role in the issue.

A July 26 release from Rep. Debbie Dingell (D-MI):

Today, founder and co-chair of the Bipartisan Disabilities Caucus (BDC), Rep. Jim Langevin (D-RI-02), named Rep. Debbie Dingell (D-MI-12) a new co-chair of the BDC, alongside Brian Fitzpatrick (R-PA-01). The announcement comes on the 32nd anniversary of the Americans with Disabilities Act.

Rep. Langevin, the first quadriplegic ever elected to Congress, founded the Caucus in 2001 shortly after being elected to the House of Representatives. For over 20 years, the Bipartisan Disabilities Caucus has served as a space to inform, educate, and raise awareness in Congress on the many issues that affect people with disabilities. Boasting more than 50 members, the Caucus has helped Congressmen and women on both sides of the aisle find common ground in pursuit of moving the needle on disability issues.

“It is an honor to be named a co-chair of the Bipartisan Disabilities Caucus, and I thank my friend and colleague Rep. Langevin for the opportunity to continue to build on his efforts to promote equality and remove barriers for Americans with disabilities. Rep. Langevin has made monumental progress advancing disability rights and bringing attention to these issues with graciousness and candor, and his leadership in Congress will be missed,” said Rep. Dingell. “Living with my husband who experienced mobility problems later in his life gave me a better understanding of just how far we still must go to ensure Americans with disabilities have access to the same experiences and opportunities as everyone else. I look forward to working with the Caucus to advance policies that promote equity and address barriers to inclusion in years ahead.”

“22 years ago, I founded the Bipartisan Disabilities Caucus to raise awareness among members of Congress in both parties about the challenges facing Americans with disabilities. Since then, our caucus has brought Republicans and Democrats together to deliver countless wins for the disability community,” said Rep. Jim Langevin, founder of the Bipartisan Disabilities Caucus. “As my tenure in Congress begins to wind down, I am so proud to welcome Representatives Debbie Dingell and Brian Fitzpatrick as my two, new co-chairs of the Bipartisan Disabilities Caucus. I know that they share my fierce commitment to creating a society that is fully inclusive and accessible for all Americans, and I am confident that the Caucus will be in strong, capable hands after I am no longer in Congress.”

“I am honored to be the new co-chair of the Bipartisan Disabilities Caucus and I look forward to working across the aisle to help the 61 million Americans living with a disability,” said Rep. Fitzpatrick. “During my time in Congress, I have been committed and will remain committed to ensuring those living with a disability have the access and coverage they not only need but deserve. As we celebrate the 32nd Anniversary of the ADA, we must recognize that there is more we can do to address the challenges that our disabled community is facing.”

“A sincere thanks to all the advocates and the members of Congress, including Speaker Pelosi and Leader Hoyer, and members of the Disability Caucus, led by Congressman Langevin. Jim, thank you for your 22 years of service in Congress. And I know Reps. Debbie Dingell and Brian Fitzpatrick will follow your tremendous leadership in the Caucus,” President Joseph R. Biden Jr. said in his pre-recorded remarks. “We know there’s more that needs to be done, and I’m committed getting more done with you… Together, let’s keep fulfilling ADA’s promise: building a nation that truly is for all of us.”

“It was my privilege to join the Bipartisan Disabilities Caucus to celebrate the 32nd anniversary of the Americans with Disabilities Act – a transformative legislative achievement and a pillar of civil rights,” Speaker Nancy Pelosi said. “Guided by Rep. Jim Langevin, the Congress’s support for the disability community has remained bipartisan and steadfast. Twelve years ago today, Rep. Langevin made history presiding over the House, making clear that every American deserves an equal voice in our society. Now, as he prepares for his next chapter, the Congress will proudly carry on his fight for justice – drawing strength from the leadership of Rep. Debbie Dingell and Rep. Brian Fitzpatrick, two devoted advocates for America’s disability community.”

“Without the ADA, I would not be in Congress. Today is a day to celebrate the tremendous progress that we’ve made for Americans with disabilities, while also recognizing how much further we have to go until all people with disabilities can enjoy fulfilling, independent lives,” Langevin continued. “Although this will be my last ADA anniversary celebration as a member of Congress, you can count on me to continue fighting for the disability community until my last day in office, and beyond. I want to thank President Biden, Speaker Pelosi, Leader Hoyer, Senator Casey, Representatives Dingell and Fitzpatrick, Undersecretary of Transportation Monje, and Jim Brett and for joining me tonight in commemoration of such a special day.”

Reps. Langevin, Dingell, and Fitzpatrick were joined for a celebration of the 32nd anniversary of the Americans with Disabilities Act by Majority Leader Steny Hoyer, Senator Bob Casey, White House Domestic Policy Council Disability Policy Director, Day Al-Mohamed, former Senator Tom Harkin, and Vice-Chair of the National Council on Disability, Jim Brett.

Autism and Inequality: International Perspectives

In The Politics of Autism, I discuss international perspectives.

Rosa A. Hoekstra has an editorial at Autism titled "Serving the underserved: How can we reach autism families who systemically miss out on support?"

Key factors that may make a family vulnerable and at risk of missing out on support include poverty, limited access to education, poor literacy, being subject to structural racism and other forms of discrimination and stigma. Families caring for a child with autism are more likely to be affected by poverty because the child’s needs may prevent the caregiver from generating an income (Minhas et al., 2015; Tilahun et al., 2016). In countries where (mental) healthcare is paid for out-of-pocket, seeking help may result in catastrophic payments, meaning that the costs comprise a very high portion of household income (de Leeuw et al., 2020; Gona et al., 2016). Families from lower-income households report poorer access to care (Bishop-Fitzpatrick & Kind, 2017) and poorer quality (Magaña et al., 2015) of care for their child with autism. Even when children are diagnosed and families are offered intervention, barriers linked to poverty (e.g. transportation costs) may prevent them from attending the intervention (Koerting et al., 2013) or having the time and capacity to actively engage with the intervention (Szlamka et al., 2021; Tekola, Girma, et al., 2020).

Low literacy is common in low-income countries but also affects vulnerable groups in high-income countries. Caregiver-reported screening instruments developed and tested in primarily highly educated families may not work as well in groups with limited literacy (Khowaja et al., 2015). Similarly, interventions developed and tested with highly educated caregivers may require adaptation when applied to families with low literacy and limited prior education.

Families with a cultural minority status in the country of residence may be less likely to access services and report lower satisfaction when accessing such services (Magaña et al., 2015). This is likely due to systemic factors. For example, clinicians may be less likely to recognise autism in ethnic minority children than in children from the cultural majority (Begeer et al., 2009) and in some contexts autism identification rates in ethnic or racial minority children (Begeer et al., 2009; Maenner et al., 2021) or children from Indigenous backgrounds (Bailey & Arciuli, 2020) lag behind identification in White children. Access barriers linked to racism may also be intertwined with language diversity. Latino parents living in the United States with low English language proficiency reported receiving poorer primary healthcare services than those with good English language proficiency (Pippins et al., 2007).

Stigma towards autistic people and their families occurs globally and across different cultures (de Leeuw et al., 2020; Han et al., 2022). In low-resource contexts where awareness of autism is low, stigma may be particularly strong (Tekola, Kinfe, et al., 2020). Stigma may affect how families interpret the signs and symptoms of their child, when and where they seek help (de Leeuw et al., 2020) and how they engage with intervention services (Guler et al., 2018; Koerting et al., 2013).

Early Intervention

 In The Politics of Autism, I discuss evaluation, diagnosis, and early intervention.

A release from Rutgers:

Despite a federal mandate requiring access to early intervention programs (EIP) for children with disabilities, fewer than half of autistic children in four New Jersey counties received services before 36 months of age, according to a Rutgers study.

Income and race-based disparities were significant obstacles to accessing EIP support, researchers found.

“For infants and toddlers on the autism spectrum, early intervention is important for improved later-life outcomes,” said Josephine Shenouda,an adjunct professor at the Rutgers School of Public Health and lead author of the study published in JAMA Pediatrics. “We wanted to understand the level of early intervention participation among children with autism.”

In the U.S., access to EIP for young children is mandated by law as part of the Individuals with Disabilities Education Act. However, the extent to which children with autism participate in early intervention programs had not previously been measured.

Shenouda and her colleagues analyzed data collected between 2006 and 2016 by the New Jersey Autism Study, an autism spectrum disorder (ASD) monitoring system developed and maintained by researchers at Rutgers New Jersey Medical School.

By analyzing the medical and special education records of 23,441 children in Essex, Hudson, Ocean and Union counties, the researchers identified 4,050 8-year-olds with autism spectrum disorder. Fewer than half (1,887; 47 percent) had received EIP services.

The researchers linked cases to data representing different indicators of wealth, including median household income, and found that ASD children residing in affluent areas were 80 percent more likely to receive EIP services than children residing in disadvantaged areas. Black and Hispanic children also were less likely to participate in EIP.

While the study was conducted in New Jersey metropolitan areas, Shenouda said the findings have important implications nationwide.

“New Jersey is known as an epicenter of autism, but it also has many resources for autism detection and treatment,” she said. “If only half of the children with autism in our study area are getting early interventions, chances are the disparities are even more pronounced in other communities and regions with fewer services.”

Shenouda said there may be multiple reasons why children from disadvantaged and minority areas aren’t enrolled in EIP, such as lower rates of ASD screening or less likely follow-through with recommendations. In either case, focused outreach can help increase EIP referrals and participation.

Shenouda added: “With autism prevalence estimates approaching 7 percent in some areas, we need universal autism screening between 18 and 36 months and enhanced support for the early intervention system. These actions will reduce economic and race-based disparities in autism identification and care.”

Bad Security at Antivax Dating Site

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.  

At The Daily Dot,  Mikael Thalen reports that an anti-vaccine dating website tleft its users’ personal data exposed online.

The site, Unjected, launched in May 2021 and claims to be the “largest unvaccinated platform” on the internet. Unjected initially made headlines in August after its app was removed from the Apple App Store for violating the company’s policies regarding COVID-19.

Similar in design to Twitter and often referred to as the “Tinder for anti-vaxxers,” Unjected has remained under the radar ever since, quietly adding new features for its small userbase. The site now offers what it describes as “mRNA FREE blood match & fertility directories” where unvaccinated users can donate blood, sperm, or eggs to one another.

While some of the ads for blood appear legitimate, others, such as one offering up unvaccinated semen, appear to have been made in jest. The site’s fertility section allows users the option to offer up their eggs, breastmilk, or semen. Users can also offer to be a surrogate.

Yet, according to the programmer and security researcher known online as GeopJr, the site’s administrator dashboard was openly accessible to anyone. The dashboard allows Unjected’s administrators to add, edit, or deactivate pages, such as the website’s “About Us” section, as well as users’ accounts.

Rick Scott: Abolish the Department of Education, Gut IDEA

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

The Individuals with Disabilities Education Act is not a civil rights law, although parents frequently assume that it is. Rather, it "condition of aid" law:  it sets certain requirements for receiving federal money.  If Congress abolished federal aid, it would effectively gut IDEA.

At the Center for American Progress, Will Ragland analyzes a policy agenda by Sen. Rick Scott (R-FL):

Scott’s plan includes shuttering the U.S. Department of Education, eliminating the $75 billion in federal education funding it administers, and sunsetting civil rights laws it enforces.

To be clear, efforts such as Sen. Scott’s are an attempt to rob low-income students and students with disabilities, to whom most of these investments are targeted. To make matters worse, many of these students are trying to make up for massive learning gaps two years into a global pandemic.

...

Doing away with these federal education resources would defund several critical programs, including the Individuals with Disabilities Education Act (IDEA). IDEA mandates that students with disabilities receive a free and appropriate public education. Indeed, before 1975, children with disabilities were regularly turned away from public schools. Eliminating this law’s funding or the mandates would needlessly harm these children and undo decades of progress.

... 

Lost protections against discrimination for students with disabilities: 7.3 million children and students with disabilities, larger than the total population of Arizona, would lose $14 billion used every year to ensure that they receive a quality education.

In a 2019 Pew survey, 72 percent wanted to INCREASE federal spending on education while only 9 percent wanted to cut it.

 

Special Ed Staffing Shortages

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

Cortney O'Brien at Fox News Digital:

Staffing shortages are a major factor in the struggle to support students with special needs, special education experts told Fox News Digital.

The federal Individuals with Disabilities Education Act (IDEA), enacted in 1975, guarantees students with disabilities access to fully licensed special educators. Addie Angelov, co-founder and CEO of the Paramount Health Data Project, said that while the "spirit and intent" of the law was commendable, reality has painted a different picture.

All states except New Hampshire and New Mexico expect shortages in special education teachers for the 2021-2022 school year, according to a spokesperson from the U.S. Department of Education. While COVID-19 can account for some staffing setbacks, Angelov said the field of special education suffered from shortages long before the virus.

"There’s so much paperwork involved," she told Fox News Digital. "There’s so much of an administrative burden."

She was one of multiple experts who identified the high rate of regulations as a key factor in dissuading people from entering the field.

"It continues to be one of the most litigious federal laws on the books," said Phyllis Wolfram, who works for the Council of Administrators of Special Education (CASE), which coordinates and implements special education programs for students under the IDEA. "It also is so highly regulated that the standards and requirements that teachers have to meet from state to state really vary. And it’s up into the hundreds."

There are some states where they’ve counted the standard requirements for that process of special education is over 1,000, Wolfram told Fox News Digital.

"That equates to 1,000 points of paperwork for teachers that they’re dotting their I’s and crossing their T’s, and it’s hard to teach and do all of the paperwork," she said.

Angelov and Wolfram cited a less-than-enticing salary as another factor keeping individuals from the field.

Polio

 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.    Examples include measles, COVID, flu ... and polio.

 Dustin Jones at NPR:

Health officials in New York have discovered a case of polio in an adult — the first case in the country since 2013.

The good news is most people have nothing to worry about. "Unless you're unvaccinated," according to retired family physician and polio survivor Marny Eulberg.

The New York State Department of Health said the unvaccinated individual from Rockland County likely contracted the virus from someone outside of the country who had taken an oral polio vaccine, which hasn't been authorized for use in the U.S. since 2000.

Back in October, Aaron Blake reported at WP:

The new YouGov poll shows that fewer than half of Republicans — 46 percent — now say parents should be required to vaccinate their children against infectious diseases.

That’s both far shy of where Democrats are at — 85 percent — and also far shy of where Republicans used to be. Used to be, as in last year.

YouGov has polled this question repeatedly over the years, and up until recently Republicans were in a pretty similar place to Democrats. Back in 2015, both 81 percent of Democrats and 67 percent of Republicans believed such vaccines should be mandated for children.

And that split held pretty constant, through 2020 — until the coronavirus vaccines.

Jane Zuckerman at Ohio Capital Journal:

State politicians advanced an effort Tuesday to place anti-vaccination language onto a general election ballot, which would leave the fate of vaccine mandates in Ohio in voters’ hands.

If passed, Ohio would become the only state in the nation with an explicit ban of vaccine mandates in its constitution. It would mark a major step backward for public health, dampen an already sluggish COVID-19 vaccination effort in Ohio, and nix a practice of mandating vaccination that traces back through early American history.

The Ohio Ballot Board — a bipartisan panel controlled by Republicans — allowed organizers of the “Medical Right to Refuse” amendment to begin gathering the 443,000 voters’ signatures required to place the referendum on a ballot. Organizers said they’re hoping to put the issue to voters in May 2023.

• The proposal covers all vaccines, not just COVID-19. It contains two basic elements:“An individual’s right to refuse any medical procedure, treatment, injection, vaccine, prophylactic, pharmaceutical, or medical device shall be absolute.”
• “No law, rule, regulation, person, employer, entity, or healthcare provider shall require, mandate or coerce any person to receive or use a medical procedure, treatment, injection, vaccine, prophylactic, pharmaceutical, or medical device nor shall the aforementioned discriminate against the individual who exercises this right.”

 

Private Equity and Layoffs

 The Politics of Autism includes an extensive discussion of autism service providers.  Since the book's publication, a big change has consisted of massive increase in private equity investments.

Chris Larson at Behavioral Health Business:

The autism therapy space got a shock to the system with hundreds of layoffs at major operators.

With the demand in services growing, investors and operators have seen the autism space as a golden investment opportunity. However, this rash of layoffs reveals the opportunity in autism comes with deep-seated challenges. A severe supply and demand imbalance sits at the core of them.

While demand for autism services is very high, steep workforce shortages have driven up labor costs. In turn, high turnover and high labor costs have tormented profit margins, according to several sources BHB interviewed for this story.

The raft of investments that came into the autism space was meant to capitalize on the supply and demand imbalance. The lack of services was seen as a greenspace opportunity to scale up operations to meet the demand.

But the workforce shortage has complicated that approach. Further, the new investment brought its own pressures to the autism therapy space.

The reported prevalence of autism has increased in recent years.

At the same time, autism services — specifically Applied Behavioral Analysis (ABA) — grew in popularity. ABA advocates secured insurance coverage requirements in all states, further enabling ABA’s popularity. This is true of ABA as both a service and an investment.

That popularity as an investment gets magnified when considering how underserved the industry is.

The Braff Group data shows that the number of private equity investments per year tripled or quadrupled from 2018 to 2021 compared to 2015.

See for instance, the closure of 10 clinics in Oregon. 

Indictments in California Restraint Case

In The Politics of Autism, I discuss the use of restraint and seclusion. Many posts have mentioned these techniques, both in schools and facilities for people with disabilities.

Press-Democrat (Santa Rosa CA):

A private school in Northern California and three of its staffers have been charged for involuntary manslaughter in the 2018 death of a 13-year-old autistic student, who died after being restrained for almost two hours for allegedly spitting at a classmate.

A recently convened special criminal grand jury indicted Guiding Hands, a now-closed school for students with special needs in the Sacramento suburb of El Dorado Hills, its former principal Starrane Meyers, teacher Kimberly Wohlwend and site administrator Cindy Keller, the Sacramento Bee reported Thursday.

Each was indicted on a charge of involuntary manslaughter, El Dorado County District Attorney Office spokeswoman Savannah Broddrick said.

The indictments, which remain sealed, come almost three years after county prosecutors filed manslaughter charges against the defendants in November 2019. The three educators each entered a not guilty plea at an initial arraignment that month, and then the case dragged on in court as the two sides discussed a plea deal and the defendants changed attorneys, according to the Bee and prosecutors.

“If a case isn’t moving, we can do a criminal grand jury to move it along,” said Broddrick.

Wohlwend is accused of holding 13-year-old Max Benson in a restraint position for more than one hour and 45-minutes, as other staffers allegedly helped carry out a “take down maneuver” and held down his legs, according to a separate civil lawsuit filed by the boy’s family.

Dr. Hotez on Politics and Antivaxxers

 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.

Unfortunately, Republican politicians and conservative media figures are increasingly joining up with the anti-vaxxers.   Even before COVID, they were fighting vaccine mandates and other public health measures.

The antivax movement is part of a broader system of right-wing conspiracy theory.

 At US News, David Levine interviews Dr. Peter Hotez:

Hotez also discussed the challenges of vaccine skepticism, misinformation and outright attacks on public health experts. As the parent of a child with autism, “by default, I became an expert in vaccine anti-science,” he said. “I wrote a book a few years back, called ‘Vaccines Did Not Cause Rachel's Autism,’ which put me in their crosshairs, and it’s made me public enemy No. 1 or 2.”

Hotez estimates that after COVID vaccines became widely available in the last half of 2021, perhaps 200,000 Americans needlessly lost their lives because they refused them. Overwhelmingly, he noted, the lives lost from vaccine refusal occurred in conservative or “red states,” according to analyses from multiple independent sources including health care analyst Charles Gaba. “This is the hardest thing I've ever had to talk about as a physician-scientist,” he said. “All of our training says … ‘Hey, you're not supposed to talk about Republicans and Democrats and liberals or conservatives. We’re supposed to be well beyond all that, be politically neutral.’”

But “this anti-vaccine activism now in the United States kills more Americans than global terrorism, nuclear proliferation [and] cyberattacks combined,” he noted.

Hotez said he believes the country is in a “very dark time” now, and he is writing another book with the working title “Anti-Science Kills,” which will address some of these crosscurrents. “I worry for the country, because I feel that we're a nation that's built on science and technologies,” he said. “One of the reasons we're a great nation is because of our research, universities and institutions, and now this is under threat to this far-right authoritarianism.”

988

In The Politics of Autism, I write about the many challenges facing people on the spectrum.  Among many other things, they are at high risk for suicide.

On Saturday, the United States transitioned from 10-digit National Suicide Prevention Lifeline to 988 – an easy-to-remember three-digit number for 24/7 crisis care. 

From HHS:

The lifeline, which also links to the Veterans Crisis Line, follows a three-year joint effort by the U.S. Department of Health and Human Services (HHS), Federal Communications Commission (FCC), and the U.S. Department of Veterans Affairs (VA) to put crisis care more in reach for people in need. This initiative is part of President Biden’s comprehensive strategy to address our nation’s mental health crisis, and is identified by U.S. Health and Human Services Secretary Xavier Becerra as a top priority at HHS. Since January 2021, the Biden-Harris Administration has made unprecedented investments to support the 988 transition, investing $432 million to scale crisis center capacity and ensure all Americans have access to help during mental health crises.

The National Suicide Hotline Designation Act, signed into law after the passage of bipartisan legislation in 2020, authorized 988 as a new three-digit number for suicide and mental health crisis. All telephone service and text providers in the United States and the five major U.S. territories are required by the FCC to activate 988 no later than July 16.

“988 is more than a number, it is a message: we’re there for you. Through this and other actions, we are treating mental health as a priority and putting crisis care in reach for more Americans,” said Secretary Becerra, who has been meeting with states across the country about the transition to 988 as part of HHS’ National Tour to Strengthen Mental Health. “There is still much work to do. But what matters is that we’re launching, 988 will be live. We are looking to every governor and every state in the nation to do their part to make this a long-term success.”

The Biden-Harris Administration increased federal investments in the 988 Suicide & Crisis Lifeline by 18-fold - from $24 million to $432 million -- to scale up crisis centers and back-up center capacity, and to provide special services, including a sub-network for Spanish language speakers.

The $432 million included $105 million in grant funding to states and territories, provided by the American Rescue Plan, to improve response rates, increase capacity to meet future demand, and ensure calls initiated in their states or territories are first routed to local, regional, or state crisis call centers. Prior to this investment, the Lifeline, which has existed since 2005, had been long unfunded and under-resourced.

The 988 Suicide & Crisis Lifeline is a network of more than 200 state and local call centers supported by HHS through the Substance Abuse and Mental Health Services Administration (SAMHSA).

“Recent investments made in the Lifeline have already resulted in more calls, chats, and texts answered even as volume has increased, but we know that too many people are still experiencing suicidal crisis or mental health-related distress without the support they need,” said Miriam E. Delphin-Rittmon, Ph.D., the HHS Assistant Secretary for Mental Health and Substance Use and leader of SAMHSA. “Over time, the vision for 988 is to have additional crisis services available in communities across the country, much the way emergency medical services work. The success of 988 depends on our continued partnership with states, as the federal government cannot do this alone. We urge states and territories to join us and invest further in answering the call to transform our crisis care response nationwide.”

FCC staff first proposed 988 in a report to Congress in August 2019 as the nationwide, easy-to-remember, 3-digit dialing code for individuals in crisis to connect to suicide prevention and mental health crisis counselors with the National Suicide Prevention Lifeline. On July 16, 2020, the FCC adopted rules designating 988 for this purpose. Recognizing the need to better support at-risk communities in crisis, including youth and individuals with disabilities, the FCC adopted additional rules in November 2021 to expand access to this important service by establishing the ability to also text 988.

“All across our country, people are hurting. They need help. The good news is that getting that help just got a lot easier. Starting tomorrow, 988 will be available nationwide for individuals in crisis, and their loved ones, to reach the 988 Suicide & Crisis Lifeline more easily,” said FCC Chairwoman Jessica Rosenworcel. “This cross-government effort has been years in the making and comes at a crucial point to help address the mental health crisis in our country, especially for our young people.”

VA administers the Veterans Crisis Line through the Lifeline’s national network. Because of VA’s partnership with the Lifeline, the Veterans Crisis Line is affected by this transition to a new number. Veterans and their loved ones can now Dial 988 then Press 1 to reach the Veterans Crisis Line.

“988 has been a long time coming and will serve as a critical resource during a crisis when every second counts. The new, shorter number will help ensure Veterans have easier access to the Veterans Crisis Line,” said VA Secretary Denis McDonough. “This launch is a whole-of-government approach in line with the President’s call to prioritize mental health by strengthening access to crisis services, and preventing Veteran suicide, our top clinical priority.”

In 2021, the Lifeline received 3.6 million calls, chats, and texts. That number is expected to at least double within the first full year after the 988 transition.

The United States had one death by suicide every 11 minutes in 2020, according to the Centers for Disease Control and Prevention. Suicide was the second leading cause of death for young people aged 10-14 and 25-34. From April 2020 to 2021, more than 100,000 people died from drug overdoses. Studies have shown that after speaking with a trained crisis counselor, most Lifeline callers are significantly more likely to feel less depressed, less suicidal, less overwhelmed, and more hopeful.

The 10-digit Lifeline number 1-800-273-TALK (8255) will continue to be operational after July 16 and will route calls to 988 indefinitely. Veterans, service members, and their families can also still reach the Veterans Crisis Line with the current phone number 1-800-273-8255 and Press 1, or by chat or text to 838255.

More information on 988 is available at www.samhsa.gov/988 and https://www.samhsa.gov/find-help/988/faqs.

Disability and Discipline

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

 From the US Department of Education:

New guidance released today from the Department of Education’s Office for Civil Rights (OCR) and Office of Special Education and Rehabilitative Services (OSERS) helps public elementary and secondary schools fulfill their responsibilities to meet the needs of students with disabilities and avoid the discriminatory use of student discipline.

These newly released resources are the most comprehensive guidance on the civil rights of students with disabilities concerning student discipline and build on the Department’s continued efforts to support students and schools through pandemic recovery.

"All students deserve to have their rights protected, and schools deserve greater clarity on how they can avoid the discriminatory use of discipline, " said U.S. Secretary of Education Miguel Cardona. "Too often, students with disabilities face harsh and exclusionary disciplinary action at school. The guidance we’re releasing today will help ensure that students with disabilities are treated fairly and have access to supports and services to meet their needs – including their disability-based behavior. We also expect that districts utilize the federal American Rescue Plan dollars to build capacity, provide professional learning opportunities for educators and school leaders, and hire additional staff. These resources will also help schools live up to their legal obligations, support an equitable recovery for all our students, and make sure that students with disabilities get the behavioral supports and special education services they need to thrive. "

The new resources reflect the concern, particularly in light of the prevalence of student mental health issues associated with the pandemic, that some students with disabilities are not receiving the supports and services necessary to address their educational needs, including their disability-based behavior.

The guidance makes clear that schools do not need to choose between complying with Section 504 of the Rehabilitation Act of 1973 (Section 504) and the Individuals with Disabilities Education Act and keeping their school community – including students and staff – safe.

The new resources include:

• Supporting Students with Disabilities and Avoiding the Discriminatory Use of Student Discipline under Section 504 of the Rehabilitation Act of 1973 and an accompanying Fact Sheet.
• Questions and Answers Addressing the Needs of Children with Disabilities and the Individuals with Disabilities Education Act's (IDEA's) Discipline Provisions.
• Positive, Proactive Approaches to Supporting the Needs of Children with Disabilities: A Guide for Stakeholders. And,
• A letter from Secretary Cardona to our nation's educators, school leaders, parents, and students about the importance of supporting the needs of students with disabilities.

How States are Implementing IDEA (Not Very Well)

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

From the U.S. Department of Education 

The U.S. Department of Education (Department) issued its 2022 determinations for States on their implementation of the Individuals with Disabilities Education Act (IDEA) for Part B and Part C. The IDEA requires the Department to issue an annual determination, based on State Performance Plan (SPP) and Annual Performance Report (APR), which evaluates the State’s efforts to implement the requirements and purposes of the IDEA, and describes how the State will improve its implementation. The Part B SPP/APR and Part C SPP/APR include indicators that measure child and family results, and other indicators that measure compliance with the requirements of the IDEA. Since 2015, the Part B SPP/APR and Part C SPP/APR have included a State Systemic Improvement Plan through which each State focuses its efforts on improving a State-selected child or family outcome.

....

 IDEA details four categories for the Secretary’s determinations. A State’s determination may be: 

• Meets the requirements and purposes of IDEA;
• Needs assistance in implementing the requirements of IDEA; 
• Needs intervention in implementing the requirements of IDEA; or 
• Needs substantial intervention in implementing the requirements of IDEA.

....

Following is a list of each State’s performance in meeting the requirements of IDEA Part B, which serves students with disabilities, ages 3 through 21: 

MEETS REQUIREMENTS Connecticut Florida Georgia Illinois Indiana Kansas Kentucky Maine Massachusetts Minnesota Missouri Nebraska New Hampshire New Jersey Oklahoma Oregon Pennsylvania Republic of the Marshall Islands South Dakota Virginia Wisconsin Wyoming 

NEEDS ASSISTANCE (one year) North Dakota Tennessee Utah 

NEEDS ASSISTANCE (two or more consecutive years) Alabama Alaska American Samoa Arizona Arkansas Bureau of Indian Education California Colorado Commonwealth of Northern Mariana Islands Delaware District of Columbia Federated States of Micronesia Guam Hawaii Iowa Idaho Louisiana Maryland Michigan Mississippi Montana Nevada New Mexico New York North Carolina Ohio Puerto Rico Republic of Palau Rhode Island South Carolina Texas Vermont Virgin Islands Washington West Virginia NEED INTERVENTION none

Joe Barksdale and Adult Diagnosis

In The Politics of Autism, I discuss the uncertainty surrounding estimates of autism prevalence.  Although diagnosis typically takes place in childhood, some adults have sought it out.

In September,  Zack Budryk wrote at WP:

In late July, actor Wentworth Miller of “Prison Break” and “Legends of Tomorrow” posted an image of a white square to Instagram, accompanied by the revelation that he had been formally diagnosed as autistic a year before.

“This isn’t something I’d change. No. I get — got — immediately [that] being autistic is central to who I am. To everything I’ve achieved/articulated,” Miller wrote.

Miller in many ways embodies our improved understanding, in recent years, of what autism can look like. For decades, autism in the public imagination has been associated with young white boys, due in large part to diagnostic criteria oriented around them — criteria that increase the likelihood their symptoms will be recognized and looked into early, relative to those of girls and people of color. Miller, in contrast, is a 49-year-old man from a multiracial background. He noted the frustration of the one-size-fits-all diagnostic process in his post, writing, “It was a long, flawed process in need of updating … I’m a middle-aged man. Not a 5-year-old.”

A. Pawlowski at Today:

Even as he reached the height of professional sports, former NFL player Joe Barksdale always felt something wasn’t quite right.

Why was it so hard to interact with people? Why was it easier to be alone? Why was it so difficult to decipher emotions — his own and those of others?


Many of those questions were answered when he was diagnosed with autism at age 30.

Looking back at his childhood without a diagnosis, Barksdale said kids like him weren’t given the patience and understanding they needed.

...

The CDC estimates 2% of adults in the U.S., about 5.4 million, are living with autism spectrum disorder.

Barksdale said he’s one of them. After playing football for the Los Angeles Chargers, the Oakland Raiders and the St. Louis Rams, he's now pursuing a career in music and stand-up comedy.

...
Joe Barksdale: There’s an autism specialist in Southern California that my therapist referred me to. There were extensive interviews and also assessment tests in that process. I was diagnosed as high functioning autistic.

 

Protecting Parents with Disabilities

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

A release from Representative Jim Langevin (D-RI):

Representatives Jim Langevin (D-RI), Karen Bass (D-CA), Don Bacon (R-NE), Brian Fitzpatrick (R-PA), and Brenda Lawrence (D-MI) today are introducing the bipartisan Equality for Families with Disabilities Act. This legislation, introduced just two weeks before the 32nd anniversary of the Americans with Disabilities Act, seeks to eliminate discrimination against parents and guardians with disabilities in state child welfare proceedings.

Currently, there are 4.1 million parents with disabilities living in the United States. While studies show that children raised by parents with disabilities do not experience worse outcomes or inferior development, parents and guardians with disabilities face disproportionate targeting for unwarranted intervention and excessive scrutiny from child welfare agencies. To combat this systemic problem, this legislation will:Crack down on discrimination against parents and guardians with disabilities by requiring individualized, fact-based evaluations of parenting capabilities to prevent state agencies from restricting parental rights solely based on disability status;Require state child welfare plans to include supports for parents, guardians, and other caregivers with disabilities;Amend the Court Improvement Program (CIP) formula grants so that state courts can use funding to assess the accessibility of state child welfare proceedings for parents and guardians with disabilities, and to implement improvements based on these assessments, such as sign language interpretation or other physical accessibility accommodations;Require state courts that receive CIP funds to demonstrate meaningful efforts to ensure full and equal participation for parents and guardians with disabilities in child welfare proceedings;Requires HHS and DOJ, in consultation with relevant agencies, organizations, and individuals, to revise and update relevant 2015 technical assistance to include education and training materials for states.

“For far too long, parents and guardians with disabilities have faced undue discrimination in state child welfare proceedings,” said Congressman Jim Langevin, co-chair of the Bipartisan Disabilities Caucus and co-chair of the Congressional Foster Youth Caucus. “The research is clear – children raised by parents with disabilities do not exhibit stunted development or worse outcomes than their peers. In fact, children raised by parents with disabilities demonstrate greater compassion, tolerance, problem-solving skills, and other positive characteristics. It’s time to end discrimination against parents and guardians in child welfare proceedings, once and for all.”

“Removing a child from their parents solely because their parents have a disability is wrong. We should be doing everything we can to keep families together, which is why we are introducing this important piece of legislation today to provide support for parents, guardians, and other caregivers with disabilities and to ensure any parent or guardian involved in a child welfare proceeding receives a fair assessment of their capabilities,” said Congresswoman Bass. “I urge my colleagues to support this important, bipartisan bill.”

“Protecting the rights of parents with disabilities must be a priority in Congress. All too often, the scrutiny on special needs families can be negatively shown in our society. Studies show that children who remain with their biological families have better outcomes across the spectrum. Our number one goal is to keep them with their families,” said Congressman Bacon.

“Currently, there are 4.1 million parents with disabilities in the United States,” said Congressman Fitzpatrick. “It is critical that we protect these parents who face excessive scrutiny and challenges. I am proud to cosponsor this bipartisan legislation and will continue to ensure that parents with disabilities are not discriminated against by state child welfare agencies.”

“Discrimination against parents and guardians with disabilities must end,” said Congresswoman Lawrence. “I am proud to support this much-needed bipartisan legislation that not only prevents discrimination against parents with disabilities in child welfare proceedings, but also requires states to provide support for parents, guardians, and caregivers with disabilities.”

“Too often, we at the National Disability Rights Network (NDRN) through our members – the nationwide network of Protection and Advocacy (P&A) agencies – have seen parents questioned on their ability to care for their children and told they were unfit. They were told these things that no parent wants to hear, just because they are people with disabilities. NDRN thanks Representative Langevin for introducing the Equality for Families with Disabilities Act to help overcome this insidious discrimination against parents with disabilities. Many people with disabilities are, or look forward to becoming a parent, and shouldn’t have to worry about losing custody of their child just because of the wrongheaded assumptions of others. We hope Congress can quickly pass this important legislation to address this and to prevent state-sanctioned discrimination,” said Curt Decker, Executive Director of the National Disability Rights Network.

Once involved in the child welfare system, parents with psychiatric, intellectual, and physical disabilities permanently lose parental rights at a rate much higher than that for people without disabilities. Furthermore, parents with disabilities are more common in populations already over-represented in child welfare systems.

To make this problem even worse, parents and families with disabilities have few legal remedies available to them. More than 30 states currently list disability as grounds for termination of parental rights, and proceedings to terminate parental rights due to disability are often undertaken even in states where disability is not included as grounds for termination. Case law concerning the Americans with Disabilities Act (ADA) and parental rights illustrates the need for this legislation, as courts have overwhelmingly favored states and rejected the claims of parents with disabilities.