Bipartisan Bill to Phase Out Subminimum Wages

In The Politics of Autism, I discuss the employment of people on the autism spectrum

 A release from Senator Bob Casey (D-PA):

Today, U.S. Senators Bob Casey (D-PA) and Steve Daines (R-MT) and U.S. Representatives Bobby Scott (D-VA-3) and Cathy McMorris Rodgers (R-WA-5) are announcing introduction of the Transformation to Competitive Integrated Employment Act, (TCIEA) legislation to end subminimum wages for people with disabilities. Currently, the Fair Labor Standards Act permits employers to pay people with disabilities below the minimum wage if they hold a certificate to do so. The TCIEA would end this discriminatory practice and support employers transitioning to paying competitive, fair wages to people with disabilities to work in integrated settings in their communities. People with disabilities are better able to achieve financial independence and spend more time engaging in their communities when they transition to competitive employment and work in integrated environments—workplaces that hire both people with disabilities and people without disabilities. The majority of subminimum wage workers have an intellectual or developmental disability and are paid less than $3.50 an hour.

Sen. Casey and Rep. Scott are also highlighting the results of a new report they requested from the Government Accountability Office (GAO) detailing the Department of Labor’s (DOL) oversight of the 14(c) certificate program, which allows employers to pay subminimum wages to workers with disabilities. The report finds that between 2012 and 2021, DOL’s Wage and Hour Division (WHD) identified over $15 million in unpaid back wages owed to more than 73,500 14(c) employees due to employers’ failure to fairly compensate employees.

“Paying workers less than the minimum wage is unacceptable. Everyone deserves to be paid a fair wage, and Americans with disabilities are no exception. This commonsense, bipartisan bill would lift up people with disabilities by raising their wages and creating competitive jobs in workplaces that employ both workers with and without disabilities,” said Senator Casey.

“Montanans with disabilities contribute to our communities and their work is valuable—they should never be paid below minimum wage. There is dignity and hope in work, so we should be doing all we can to expand opportunity and ensure fair pay to Montanans with disabilities in the workforce,” said Senator Daines.

“While GAO notes that the number of employers authorized to pay subminimum wages under the 14(c) program decreased by 50 percent between 2010 and 2019, the data suggest that most 14(c) workers are earning less than $3.50 per hour. In other words, they are still being denied equal opportunity in America,” said Ranking Member Scott. “It is long past time for Congress to phase out the subminimum wage for workers with disabilities and expand access to fulfilling employment and economic self-sufficiency. By fostering collaboration between employers and services providers, this bipartisan legislation makes clear that it is not only possible, but beneficial, to invest in fully integrated and competitive jobs for people with disabilities. We must take this next step to ensure that every worker can succeed in the workplace and earn a fair wage.”

“America is the land of opportunity where no one is defined by the conditions of their birth. It’s in this spirit that we should be doing everything we can to bring people with disabilities off the sidelines and into the workforce,” said Rodgers. “This work started with creating and expanding ABLE accounts, which are empowering individuals with disabilities to reach their full potential. Today, with this bipartisan legislation, it continues on the next policy frontier – employment. Together, we can end the outdated practice of paying individuals with disabilities a subminimum wage and help them live more independent lives.”

Mark Riccobono, President of the National Federation of the Blind, said: “States, federal agencies, and employers themselves increasingly recognize that it is time to move away from the antiquated model of segregated, subminimum-wage employment and toward allowing the blind and other disabled Americans to participate in the kind of meaningful, remunerative work that others take for granted. Blindness or disability does not equal lack of capacity to engage in competitive, integrated employment, and we applaud Chairman Casey for rejecting eighty-five years of false thinking about our capabilities.”

The GAO report found that the number of employers paying subminimum wages to people with disabilities has decreased from 3,100 in 2010 to almost 1,600 in 2019, while more people with disabilities, including those with intellectual disabilities, participate in the labor market than ever before. WHD officials and stakeholder organizations attribute the declines in subminimum wage employment to recent federal and state policies, including Senator Casey’s successful efforts to include funding for the Subminimum Wage to Competitive Integrated Employment (SWTCIE) pilot program in the FY21 federal spending bill. The program provides five-year grant awards for states to help employers transition to paying competitive, fair wages to people with disabilities. The Pennsylvania Office of Vocational Rehabilitation will receive $13 million to begin phasing out subminimum wage jobs for Pennsylvanians with disabilities as part of the program.

GAO also found that WHD’s processing times for 14(c) certificate applications and renewals varied widely, ranging from 2 days to over 2 years. Long processing times allow employers with expired certificates to continue operations without meeting program requirements. Some of these requirements include paying fair commensurate wages to workers and providing required career counseling about employment options outside of subminimum wage work, activities that can help people with disabilities earning subminimum wages to transition to competitive, integrated employment.

GAO outlined three recommendations to WHD to ensure better oversight of the 14(c) certificate program:WHD should set and track timeliness goals for intermediate steps and overall duration for processing 14(c) applications.
WHD should externally communicate its goals for timely 14(c) application processing to employers and stakeholders.
WHD should solicit feedback from 14(c) employers regarding the online application and take steps to address limitations and improve the overall timeliness of application processing.

Read more about the Transformation to Competitive Employment Act here link.

Read the GAO report here link.

Fewer Employers Take Part in Subminimum Wage Program

In The Politics of Autism, I discuss the employment of people on the autism spectrum.

Government Accountability Office:

Through the 14(c) program, the Department of Labor (DOL) certifies employers to pay individuals with disabilities wages below the federal minimum—also known as subminimum wage. Employer participation in this program decreased by about half from 2010 to 2019, according to GAO's analysis of DOL data. During this period, the number of 14(c) workers also fell from about 296,000 to 122,000. Officials GAO interviewed from DOL and four stakeholder organizations attributed this decline, in part, to federal and state policies restricting the payment of wages below the federal minimum. Since August 2019, most 14(c) workers earned less than $3.50 per hour, while about 14 percent earned at or above the federal minimum of $7.25. Representatives from two of the four stakeholder organizations said these earnings patterns may reflect differences in workers' skills and abilities, employment opportunities, and state minimum wage laws.

Nevada License Designation

  A number of ASD people drive cars.

In The Politics of Autism, I write:

[M]any police departments have trained officers and other first responders how to spot signs of autism and respond accordingly.[i] Some organizations have also published identification cards that ASD adults can carry in order to defuse potential conflicts. Virginia provides for an autism designation on driver licenses and other state-issued identification cards. Once again, however, the dilemma of difference comes into play. One autistic Virginian worries: “Great, so if I get into an accident, who’s the cop going to believe, the guy with the autistic label or the guy without it?” Clinical psychologist Michael Oberschneider is concerned about the understanding level of first responders: “I think many people still think of Rain Man or, more recently, the Sandy Hook Shooter, when they think of autism even though very few people on the autistic spectrum are savants or are homicidal and dangerous.”[ii]

Michael Bell at KVVU-TV:

A bill being considered in the Nevada Legislature would require - under certain circumstances - the DMV to place a designation on a driver’s license for certain persons with autism.

AB161, acknowledges that current regulations with the DMV have symbols or other indicators of medical conditions on driver’s licenses. If passed, it would put such a designation if that person had autism.

The application for a license would include a statement from a licensed physician or an advanced practice registered nurse that the person does indeed have autism.

When cops encounter autistic people they may not respond in the same way as NT people, and things can get out of hand.  A letter of support for the bill makes this point:

My name is Troyce Krumme and I am the Vice Chairman of the Las Vegas Police Managers and Supervisors Association (PMSA). I am writing to express support for Assembly Bill 161.

If approved, this bill will help reduce the likelihood of harmful encounters between individuals with a communications impairment and law enforcement, primarily during traffic encounters. By creating a system where individuals with communication impairments can voluntarily advise the DMV of a communication impairment and the DMV can subsequently denote such on a driver’s license and vehicle registration, the likelihood of miscommunication during a police encounter is likely to reduce.

In policing, when officers have contact with citizens, we are always looking for indicators. Those indicators can go a long way in hinting to the officer how the contact will progress. Is the person going to be compliant? Is the person not going to be compliant? Why is the person not going to be compliant? Is the person showing signs of aggression? Why is the person being aggressive? Is the person showing signs that they might run? Is the person showing signs they might try and hurt me? These are all examples of things an officer working need to consider, to keep themselves and the people they have contact with safe. When trying to decipher these indicators, knowledge is power.

This bill offers an opportunity for individuals diagnosed with certain impairments that may impact their behavior patterns and could be misconstrued by an officer as aggression. Having this information potentially available for officers before or as an interaction is progressing, could give officers pause and a reason to explain the person’s behavior when the officer is deciding if force will be necessary for their protection. In a nutshell, I believe this bill could go a long way in avoiding potentially tragic outcomes from certain police encounters. I urge the members of the committee to pass this bill and put that information into the hands of Nevada’s police professionals.

I would like to add something I believe should be seriously considered. Police officers have access to other databases that show information such as local criminal history, various permits, and offender registrations. In Clark County one such database is SCOPE. The sponsors of this bill and this committee should consider adding these types of databases to this piece of legislation to increase the chances of this information getting into the hands of law enforcement. 

 

Disability Employment Rate

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

From the Bureau of Labor Statistics:

In 2022, 21.3 percent of persons with a disability were employed, up from 19.1 percent in 2021, the U.S. Bureau of Labor Statistics reported today. For persons without a disability, 65.4 percent were employed in 2022, up from 63.7 percent in the prior year. The unemployment rates for persons with a disability (7.6 percent) and persons without a disability (3.5 percent) both declined in 2022.

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. Collection of the data on persons with a disability is sponsored by the Department of Labor's Office of Disability Employment Policy. 

... Highlights from the 2022 data: 

• Half of all persons with a disability were age 65 and over, nearly three times larger than the share for those with no disability.
• Across all age groups, persons with a disability were much less likely to be employed than those with no disability. 
• The unemployment rate for persons with a disability was about twice as high as the rate for persons without a disability. (
• In 2022, 30 percent of workers with a disability were employed part time, compared with 16 percent for those with no disability. 
• Employed persons with a disability were more likely to be self-employed than those with no disability

...

The employment-population ratio--that is, the percent of the population that is employed--for persons with a disability increased by 2.2 percentage points from the prior year to 21.3 percent in 2022. The employment-population ratio for persons with a disability in 2022 was the highest on record since comparable data were first published in 2008. The employment- population ratio for persons without a disability, at 65.4 percent in 2022, increased by 1.7 percentage points over the year. The lower ratio among persons with a disability reflects, in part, the older age profile of persons with a disability; older individuals are less likely to be employed, regardless of disability status. However, across all age groups, persons with a disability were much less likely to be employed than those with no disability.

 Table 1. Employment status of the civilian noninstitutional population by disability status and selected characteristics, 2022 annual averages

 Table 2. Employed full- and part-time workers by disability status and age, 2022 annual averages

 Table 3. Employed persons by disability status, occupation, and sex, 2022 annual averages

 Table 4. Employed persons by disability status, industry, class of worker, and sex, 2022 annual averages

 Table 5. Persons not in the labor force by disability status, age, and sex, 2022 annual averages

Reforming California's 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.

Assemblymember Dawn Addis, D-Morro Bay, has introduced a bill (AB 1147) to reform California’s developmental disability service system.

From Legislative Counsel's Digest:

The measure follows a series of recent reports, a state audit and public hearings that revealed racial disparities, inadequate oversight and limited accountability at California’s regional centers — a network of 21 nonprofits that coordinate services for about 400,000 children and adults with developmental and intellectual disabilities.

The Lanterman Developmental Disabilities Services Act makes the State Department of Developmental Services responsible for providing various services and supports to individuals with developmental disabilities, and for ensuring the appropriateness and quality of those services and supports. Pursuant to that law, the department contracts with regional centers to provide services and supports to persons with developmental disabilities.

This bill would enact the Disability Equity and Accountability of 2023, which would make various changes to the act for purposes including gathering relevant data and providing increased oversight of regional center operations and performance. The bill would require an evaluation of regional center performance by the department, which would be implemented using a common set of performance measures. The bill would require the assessments to use performance measures in 7 specific domains: community integration, employment, equity in access, case management, client and family choice, experience and satisfaction, human and civil rights, and health and safety. The bill would require the department to establish standards for theses performance measures, as specified, by July 1, 2024.

The bill would require the department, as part of its planning process for the planning and development of a uniform, statewide data automation system, to develop a charter for approval by the Secretary of the California Health and Human Services Agency and the Department of Technology. The bill would require the charter development process to include the participation and input of program consumers and families, researchers and quality and outcome evaluators, regional centers, and service providers. The bill would require the charter to include specified components, including, but not limited to, an impact statement, project guiding principles, and program goals, including maximizing the performance and business processes for the delivery of intellectual or developmental disabilities (IDD) system services to regional center consumers.

Existing law requires the department, in consultation with stakeholders, to identify a valid and reliable quality assurance instrument that assesses consumer and family satisfaction, provision of services in a linguistically and competent manner, and personal outcomes, as specified.

This bill would require the department by March 1, 2024, to submit a report to the Legislature describing the extent to which the requirements of this section have not been met, including the surveying of all consumers, including those who have not purchased services, and providing specific steps and the schedule by which these requirements will be met.

Existing law requires regional centers to conduct client assessments, and requires those assessments to be performed within 120 days following intake, and within no more than 60 days following initial intake if delay would expose the client to unnecessary risk to their health and safety, as specified.

This bill would revise those timeframes to require an assessment to be completed within 60 days of intake, and within 30 days of intake for at-risk clients.

Existing law declares the intent of the Legislature to ensure that the individual program plan (IPP) and provision of services and supports by the regional center system is centered on the individual and the family of the individual with developmental disabilities and takes into account the needs and preferences of the individual and the family, as prescribed.

This bill also would declare the intent of the Legislature for the IPP to be developed consistent with the federal Affordable Care Act, as specified, requiring community-based long-term services and supports be person-centered and self-directed, and ensuring that goals in any plan allow for innovation and nontraditional services service delivery. The bill would revise existing complaint procedures for consumers and their representatives, including requiring complaints to be made to the Director of Developmental Services, and requiring the director to issue a written administrative decision within 30 days of receiving the complaint, and send a copy of the decision to the complainant, the director of the subject regional center or state-operated facility, and the service provider, as prescribed.

The bill would revise the criteria applicable to regional center governing boards with which the state contracts, including with respect to terms, the composition of nominating committees, and training. The bill would require the department to establish and adopt a grievance procedure for governing board members, as specified. The bill also would make regional centers subject to requirements of the California Public Records Act.

Medicaid Reimbursement Rates in Connecticut

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

Ginny Monk at Connecticut Mirror:

Kids across Connecticut, like Jaylen, are in a holding pattern. They’re wait-listed for autism services such as therapy and medication management, and while they wait, behavioral issues that need quick and consistent intervention are solidifying, parents and providers said.

If they don’t get the help they need, they are often at heightened risk of needing to be institutionalized or hospitalized because of their mental health issues.

Federal law requires that kids with autism diagnoses receive “timely and adequate medically necessary services,” a Dec. 15 letter from disability and child advocates to state officials said.

Reimbursement rates for Medicaid in Connecticut, where the program is known as HUSKY,[Health Care for Uninsured Kids and Youth] are too low for autism behavioral services, providers and advocates say. They’re the lowest in New England.

It means providers are losing money when they offer services to kids with HUSKY insurance. Many have either added more patients with private insurance to their workload or aren’t accepting the public option, providers and advocates said.

“Kids with autism and other developmental and intellectual disabilities are really underserved,” said Sarah Eagan, Connecticut’s child advocate. “No one has ever pushed back on that — everyone acknowledges that.”

Despite that widespread acknowledgement, kids aren’t getting the help they need, she said.

Kids who have HUSKY insurance are typically in families with lower incomes and are disproportionately likely to be Black or Hispanic.

Green Shoots and Disability Employment

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

Diane Winiarski at Kiplinger:

Americans with disabilities are already returning to work in droves. More than 35% of the disability community ages 18-64 were employed in September — the highest rate(opens in new tab) since the U.S. began tracking this figure in 2007, and up from 31% right before the pandemic. By contrast, 78% of adults without disabilities were employed — about the same as the pre-pandemic figure.

This surge is largely due to a labor market that has remained tight for about two years and employers’ shifting perspective on work-from-home and hybrid environments and other accommodations that attract workers with disabilities to fill open positions.

Christian Online Film Festival Winner

 

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.

Joshua Pitney (aka "JP"), a sophomore at Pepperdine University, made Infinite, a  7-minute narrative film.  It depicts an autistic student who come to accept his identity. It won several awards at the Christian Online Film Festival.

Prevalence and Underdiagnosis

In The Politics of Autism, I discuss evaluation, diagnosis, and the uncertainty of prevalence estimates.

Ronit Chakraborty, Sugata Banerji have an aticle at International Journal of Health and Medical Engineering titled "A Machine Learning-based Analysis of Autism Prevalence Rates across US States against Multiple Potential Explanatory Variables."  Abstract:

There has been a marked increase in the reported prevalence of Autism Spectrum Disorder (ASD) among children in the US over the past two decades. This research has analyzed the growth in state-level ASD prevalence against 45 different potentially explanatory factors including socio-economic, demographic, healthcare, public policy and political factors. The goal was to understand if these factors have adequate predictive power in modeling the differential growth in ASD prevalence across various states, and, if they do, which factors are the most influential. The key findings of this study include (1) there is a confirmation that the chosen feature set has considerable power in predicting the growth in ASD prevalence, (2) the most influential predictive factors are identified, (3) given the nature of the most influential predictive variables, an indication that a considerable portion of the reported ASD prevalence differentials across states could be attributable to over and under diagnosis, and (4) Florida is identified as a key outlier state pointing to a potential under-diagnosis of ASD.

Kansas State Legislator Says People in Sheltered Workshops "Can't Do Anything"

In The Politics of Autism, I discuss the employment of people on the autism spectrum.

Katie Bernard at The Kansas City Star

Kansas disability rights groups are asking a Johnson County Republican to apologize for his “hurtful” comments about developmentally disabled Kansans.

During a committee hearing Tuesday, Rep. Sean Tarwater, a Stilwell Republican, spoke in opposition to an effort to block tax credits for sheltered workshops that hire developmentally disabled Kansans and pay below minimum wage. 

"They are people who really can’t do anything,” Tarwater said in reference to developmentally disabled Kansans housed in such workshops. “If you do away with programs like that they will rot at home.”

Two days later, Disability Rights Center of Kansas and the Kansas Council on Developmental Disabilities issued a pair of statements condemning Tarwater’s comments as derogatory toward disabled Kansans and untrue.

Rocky Nichols, executive director of the Disability Rights Center of Kansas, said Tarwater’s statements demonstrated an old way of thinking and that disabled Kansans contribute to the state outside sheltered workshops that pay below minimum wage.

“They are not ‘rotting.’ The opposite is true – they are succeeding and living the American Dream,” Nichols said. “Many people with disabilities tell us that they feel like they are wasting their talents when they are working in a sheltered workshop, often for pennies an hour,” he added.

 ...

On Thursday, Tarwater countered that the disability rights groups owed him an apology for “dragging those businesses through the mud.” He said he believed the sheltered workshops were important to serve severely disabled individuals who are not capable of taking on work at minimum wage or higher. “Where would they go,” he said. “These people are severely disabled and can’t really work but they have a place to go every day.”

Transplant Discrimination

In The Politics of Autism, I discuss the  civil rights of people with autism and other disabilities.   A number of posts have provided details on discrimination in organ transplantation.

Sophie Putka at MedPage Today:

Despite similar kidney transplant outcomes, adults with intellectual and developmental disabilities (IDD) were less likely than the general population to be evaluated for transplant and less likely to receive one, a propensity-score matched analysis found.

In the cohort of more than 21,000 end-stage kidney disease (ESKD) patients on Medicare, multivariable analysis showed that patients with IDD were 54% less likely than those without IDD to be evaluated by a transplant surgeon (OR 0.46, 95% CI 0.43-0.50) and 62% less likely to receive a transplant (OR 0.38, 95% CI 0.34-0.42), according to researchers led by Brittany Hand, PhD, of The Ohio State University School of Health and Rehabilitation Sciences in Columbus.

Among the subset evaluated by a transplant surgeon, about a fourth of the patients included overall, those with IDD had 51% lower odds of receiving a transplant (OR 0.49, 95% CI 0.43-0.55), the group reported in JAMA Surgery.
...

Only some states have passed laws that explicitly prohibit discrimination against people with disabilities in transplantation, they noted, adding that there's a need for strong evidence to back new policies -- like a bill at the federal level that would prohibit healthcare providers from denying someone access to an organ transplant because of a disability.


"We echo the authors' assertion that there is an urgent need to address bias and curb discrimination against this vulnerable patient population," said Melissa Chen, MD, and Alexander Toledo, MD, both of the University of North Carolina at Chapel Hill, writing in an accompanying editorial.

More Misleading Headlines

In The Politics of Autism, I write:

If the science were not confusing enough, its coverage in the mass media has added another layer of murk. News reports hype tentative findings and weak correlations as “breakthroughs” in the quest for autism answers. When the research yields mixed results, the media headlines can be comically inconsistent. Consider how various publications covered a 2013 study on the impact of in vitro fertilization:

• RARE IN VITRO TECHNIQUE RAISES AUTISM RISK, STUDY SAYS
• IVF PROCEDURES DO NOT BOOST AUTISM RISK
• SOME FORMS OF IVF LINKED TO AUTISM, MENTAL DISABILITY
• IVF, AUTISM NOT LINKED, BUT STUDY FINDS RISK OF INTELLECTUAL DISABILITY[i]

[i] John J. Pitney, Jr., “IVF, Autism, and Headlines,” Autism Policy and Politics, July 2, 2013. Online: http://www.autismpolicyblog.com/2013/07/ivf-autism-and-headlines.html; “Autism and IVF: More Contradictory Headlines,” Autism Policy and Politics, July 3, 2013. Online: http://www.autismpolicyblog.com/2013/07/autism-and-ivf-more-contradictory.html

Daily Mail (UK)

Scientists 'CURE autism' in mice using $3 epilepsy drug — in potential breakthrough

SciTechDaily: 

A Drug That Cures Autism? Neuroscience Study Yields Promising Results

It is a study of mice.  Mouse studies might yield some useful information but they do not translate directly into "cures," even if such things were possible.

See this 9-year-old headline: Bacterium can reverse autism-like behaviour in mice

invisible Disabilities

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

 From Scripps News:

Many people live with disabilities that are often considered invisible — ones that, unless somebody said they had them, no one would know.

This includes conditions like diabetes, vision or hearing problems, and chronic pain. There are also things like autoimmune diseases, developmental conditions — like autism spectrum disorder — and mental health issues, including anxiety and depression.

There's not an exact measurement of how many people are included in this group, as it can depend on how one defines a disability. But the CDC estimates 61 million Americans have a disability that affects major life functions, and the advocacy group Disabled World estimates about 1 in 10 Americans have an invisible disability

Low Pay Leads to Shortages of Direct Support Professionals

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  One is a shortage of caregivers and direct support professionals, which is likely to get worse.  

Tony Thomas at Crain's Cleveland Business:

Welcome House, along with over 200 nonprofit organizations across the state, are seeking the help of Gov. Mike DeWine and our Ohio state legislators by asking for a permanent increase in Medicaid funding so that we can invest in increasing what we're able to pay our direct support staff.

To put it in perspective, we're down 80 staff members this year. And let's be honest, the work we do is not easy — our DSPs are responsible for tasks like cooking and cleaning, medication adherence, even dressing and assisting individuals with personal hygiene. Shifts include early mornings, overnights and weekends. Some days are happy, many days are tough, but regardless of the situation, we are in constant need of caring, qualified staff to provide the support the individuals we serve deserve (and frankly, can't live without).

This is made even more difficult by the fact that we're only able to offer $12 per hour. It's near impossible to find qualified, dedicated staff when a more comfortable job at a big-box retailer or chain coffee shop pays almost double. Not being able to pay our staff an adequate wage means we must turn down families and individuals in desperate need of our services.

 Clarissa Donnelly-DeRoven at NC Health News:

It’s hard to quantify the shortage of these workers because of poor data collection at the federal and state level.

One way to get a scope of the issue locally is to compare the hours of service people have been approved to receive through North Carolina’s Medicaid Innovations Waiver — for people who have disabilities that require a significant level of care — to the number of hours the state actually pays for.

Of all the services authorized between 2019 and 2021, just about 79 percent of the available dollars were paid out, according to data that was obtained by North Carolina Health News through a public records request.

That doesn’t mean 79 percent of people got services, or that everyone got 79 percent of the services they needed. Some people likely received all of their hours while others got nothing, but the data lacks these details.

...

For all this, direct service providers get paid about $11.50 an hour on average, according to a pay study conducted by policy workers and advocates in the state. The wage has only risen about two dollars since 1998, when a study by researchers at UNC Charlotte found the average pay to be about $9.13 an hour.

“That is abysmal,” said Pat Porter, who is currently working on the pay study and serves as a policy adviser for the state legislature. She also headed up the developmental disabilities division within the state’s health department for nearly 15 years. “It is certainly not a living wage.”

Surveys of the service provider workforce have found that the job is primarily done by young women of color, especially immigrants, without college degrees. Advocates argue that’s a reason wages have remained so low for so long.

Measuring Flourishing

Uncertainty is a major theme of The Politics of Autism.  In the concluding section, I write:

A key question in autism policy evaluation is simple to pose, hard to answer: How do autistic people benefit? How much better off are they as a result of government action? While there are studies of the short-term impact of various therapies, there is surprisingly little research about the long term, which is really what autistic people and their families care about. As we saw in chapter 4, few studies have focused on the educational attainment of autistic youths. For instance, we do not know much about what happens to them in high school, apart from the kinds of classes that they take. One study searched the autism literature from 1950 through 2011 and found just 13 rigorous peer reviewed studies evaluating psychosocial interventions for autistic adults. The effects of were largely positive, though the main finding of the review is that there is a need for further development and evaluation of treatments for adults.

\Samantha M. Ross, Justin A. Haegele, Kristy Anderson, Sean Healy have an article at Autism Research titled "Evidence of item bias in a national flourishing measure for autistic youth."

The abstract:

Flourishing is a positive health indicator that aligns with strengths-based perspectives and measures within autism research. Flourishing indicators were recently included in the National Survey of Children's Health (NSCH) and have been used to evidence disparities in flourishing experienced by autistic children compared to non-autistic peers. Yet, little has been done to examine the utility of standard flourishing items for this population. This study examined the NSCH caregiver-reported flourishing items for measurement item bias. A cross-sectional, representative sample of autistic and non-autistic US children aged 6–17 years (n = 41,691) was drawn from the 2018–2019 NSCH public dataset. A confirmatory factor analysis using a multiple indicators and multiple causes model (MIMIC-CFA) was conducted to (1) test for differential item functioning (DIF; i.e., measurement bias); and (2) estimate latent mean group differences after controlling for DIF. Findings supported a 3-factor (social competence, school motivation, and behavioral control), 10-item model structure consistent with past literature, yet measurement bias was evident for 6 of the 10 items. Persistent group differences, after accounting for DIF and covariates, indicates that caregivers of autistic children perceive their children are experiencing meaningfully lower flourishing outcomes compared to caregivers of non-autistic children. However, evidence of measurement bias for items related to the social competence dimension calls into question the applicability of this measure for autistic children. Further interpretation of group differences and use of this measure should be approached with caution.

\From the article:

Significant autism-based differences on all three flourishing subdomains (social competence, behavioral control, and school motivation), and six of the 10 flourishing items (including: is bullied, bullies others, argues, difficulty making friends, finishes tasks, argues too much, and shares ideas with caregiver), after controlling for covariates and DIF, support Hilton et al.’ (2019) conclusion that caregivers of autistic children perceive their children to be experiencing meaningfully lower flourishing outcomes, compared to caregivers of non-autistic children. However, these group differences should be interpreted with caution. Evidence of measurement bias for all items in the social competence subdomain flags this as a “disability-confounded health measure” (Krahn et al., 2009). Any observed group differences in flourishing may, in part, be attributable to differences in how caregivers of autistic and non-autistic children understand and respond to these survey items. This “noise” in the data makes the measure less sensitive and harder to interpret (Krahn et al., 2009). While effect sizes were small (<0.30), measurement bias indicates caregivers of autistic and non-autistic children, who have comparable mean scores in the social competence dimension of flourishing, are responding differently to specific survey items. A misinterpretation of autistic children’s lower scores in social competence as deficits in flourishing, rather than differences in caregiver-perceived health experiences, may perpetuate ableist notions of which childhood behaviors do (and do not) constitute “thriving” in physical and psychosocial development. Our fundamental concern is that the flourishing measure does not reflect the spectrum of diverse, but equivocal, social behaviors autistic and non-autistic children experience. Instead, non-neurotypical behaviors implicitly signal lower potential for an upward developmental trajectory (Krahn et al., 2009), and consequently, scores on the social competence items may be inaccurately pulling down autistic children’s flourishing scores (Tavernor et al., 2013). A neutralized measure that is more sensitive to “autistic flourishing” experiences is needed to minimize the risk for erroneous research conclusions (Silverman, 2019).

Prevalence During COVID-19

In The Politics of Autism, I discuss evaluation, diagnosis, and the uncertainty of prevalence estimates.

 Xin Wang and colleagues have a letter to the editor of The Journal of Autism and Developmental Disorders, "Prevalence of Autism Spectrum Disorder in the United States is Stable in the COVID-19 Era."

Although the United States (US) have been monitoring the autism spectrum disorder (ASD) prevalence, whether the prevalence has continued to increase, decrease, fluctuate or reached a stable level remained unclear during the COVID-19 pandemic. We have requested the 2016–2021 National Survey of Children’s Health (NSCH) data in the United States to estimate weighted ASD prevalence and assess linearity/nonlinearity in the time trend. We did not observe linear or nonlinear trends of the ASD prevalence during the 2016–2021 periods. The current ASD prevalence experienced a 0.3% drop from 2019 to 2020 but a 0.3% uptick in 2021, suggesting a stable trend during the COVID-19 pandemic. Our findings shed lights on the need for the modified strategy of monitor ASD prevalence during the COVID-19 era.

The State of the Union and Disabilities

The Politics of Autism includes an extensive discussion of insurance and Medicaid services for adults with intellectual and developmental disabilities. Home and Community-Based Services (HCBS) are particularly important.

 The White House posted reactions to the State of the Union address from disability advocates:

Dom Kelly, President & CEO, New Disabled South: “It’s time that disabled people get care in their homes instead of institutions. It’s time that care workers get paid living wages. We can finally get this done. #CareCantWait #sotu2023″ [Tweet, 2/07/23]

Kim Knackstedt, Senior Fellow and Co-Director, The Century Foundation: “Every issue is a disability issue. #Caregiving is critical for disabled people to live in homes, work, receive an education, & fully participate in their communities. Thanks @POTUS for highlighting that #CareCantWait #SOTU #DisCo” [Tweet, 2/07/23]

Laura Kennedy, Board President, The Arc of the United States: “When @POTUS talks about supporting families and people with disabilities with home care services— and the workers who provide them— this is who he means. Ray and Nicholas (and countless families like them) deserve the services to live and work in their community! #SOTU @SOTU2023″ [Tweet, 2/07/23]

Nicole Jorwic, Chief of Advocacy and Campaigns: “Still a little tear-y thinking about the fact that @POTUSchighlighted ALL care pillars in #sotu2023 #PaidLeave #ChildCare #AgingAndDisabilityCare & good pay for #CareWork So proud to be part of the #CareCantWait coalition. We’ve shown we are #StrongerTogether Let’s get it done” [Tweet, 2/07/23]

Tony Coelho, Founder, Coelho Center for Disability Law, Policy and Innovation at Loyola Marymount University: “We have a President who supports and understands the #Disability community! #disabilityinclusion @POTUS ‘Pass my plan so we get seniors and people with disabilities the home care services they need and support the workers who are doing God’s work.'” [Tweet, 2/07/23]

Informal Removals

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

Erica L. Green at NYT: 

In a report last year, the National Disability Rights Network, a national nonprofit established by Congress more than four decades ago, found informal removals occurring hundreds and perhaps thousands of times per year as “off-the-book suspensions.” The report said the removals also included “transfers to nowhere,” when students are involuntarily sent to programs that do not exist.

The removals largely escape scrutiny because schools are not required to report them in the same manner as formal suspensions and expulsions, making them difficult to track and their impact hard to measure.

But interviews with families, educators and experts — as well as a New York Times review of school emails, special education records and other documents — suggest that informal removals are pernicious practices that harm some of the nation’s most vulnerable children. Students are left academically stifled and socially marginalized. Their families often end up demoralized and desperate.

...

Some districts acknowledge that they have come up short.

Such was the case with Jasim McDonald, a Black 14-year-old eighth grader with autism at Alice Birney Waldorf School in Sacramento, Calif. Records show that the Sacramento City Unified School District has a history of disciplining students with disabilities, particularly those who are Black, at a higher rate than most other public schools in the state. The district is facing a class-action lawsuit alleging that it “disparately subjected” Black students with disabilities “to exclusionary school discipline and other tactics that remove them from school.”

From early on Jasim exhibited the fidgeting, rocking and pacing behavior characteristic of children with autism. In his first-grade reports, his white teacher at the predominantly white Alice Birney deemed him “disruptive,” or said he “needed a day off” or “wasn’t ready to learn.”

...

She filed a formal complaint with the Sacramento school district in 2019, alleging that Jasim had been denied an equitable education because of the frequent removals, which Ms. Barnes said were based on his disability and race.

In an investigative report issued that year, district officials found that while the teacher’s actions “may not have been perfect, there is no evidence to suggest that her actions are motivated by race or disability.

Jasim now has a different teacher who tells him he belongs, and assures him if he gets anxious when he leaves the classroom for periods of special instruction that his classmates will not move on without him. He is for the first time testing at grade level and is working on a capstone project about being a Black male student with autism. He said he wants it to show how people of different races and with disabilities can learn.

“Everything will be fine,” he said, “if you have people who support you.”

 

Terminology Fights

 From the preface to The Politics of Autism.

A major theme of this book is that just about everything concerning autism is subject to argument. There is not even any consensus on what one should call people who have autism and other disabilities. “In the autism community, many self-advocates and their allies prefer terms such as `Autistic,’ `Autistic person,’ or `Autistic individual’ because we understand autism as an inherent part of an individual’s identity,” writes blogger Lydia Brown.[i] Other writers prefer “people-first” language (e.g., “persons with autism”) since it puts the persons ahead of the disability and describes what they have, not who they are.[ii] For the sake of stylistic variety, this book uses both kinds of language, even though this approach will satisfy neither side. I can only say that I mean no offense.

Rachel Zamzow at Science:

In a recent survey of 195 autism researchers, 60% of responses included views about autistic people the study authors deemed dehumanizing, objectifying, or stigmatizing. Some responses described autistic people as “shut down from the outside world” or “completely inexpressive and apparently without emotions,” according to the November 2022 Frontiers in Psychology study. “What is worse than I thought was how blatant a lot of the content was, which shows that, for [a] large proportion of participants, they did not consider the things they were saying to be problematic at all,” says lead author Monique Botha, a psychologist at the University of Stirling.

Ableist language and the mindset that underlies it also trickles down to study design, says Botha, who is autistic. In studies testing autism interventions, for example, researchers rarely track adverse reactions such as physical harm or psychological distress, found a 2021 study led by Kristen Bottema-Beutel, who studies special education at Boston College. This oversight suggests many researchers see autistic people as less than human, Botha says. “It’s one of the most pervasive practices that genuinely keeps me up at night.”

At the same time, others argue that making certain terms off-limits stifles the scientific process. “If you can’t use words like ‘challenging behaviors’ or ‘severe disorder’ or ‘symptoms’ or ‘comorbid disorder,’ then how are you supposed to study those things?” asks Alison Singer, president of the Autism Science Foundation, who laid out these concerns in a December 2022 commentary in Autism Research. Singer and others, including her three co-authors, fear that using neutral terminology—such as “traits” or “features” in place of “symptoms”—downplays the experiences of autistic people who, like Singer’s daughter, have significant difficulty communicating, intellectual disabilities, or critical health concerns. It “trivializes the severity of autism,” says Singer, who is nonautistic. Botha, Bottema-Beutel, and 61 other researchers, clinicians, and advocates have submitted a letter to the editor rebutting Singer’s commentary.

Singer and others also worry moving toward neutral language could lead major funding agencies to shift support from research exploring autism’s underlying biological causes and potential treatments to other sectors, such as services and supports for autistic people—though whether this would be a positive or negative change is also a subject of debate. For now, the bulk of funding for the field falls squarely on the side of biological research in the United States, as well as in the United Kingdom and Australia.

Amid the ongoing language dispute, researchers on all sides report coming under attack, in the form of vitriolic Twitter exchanges, remarks at conferences, and being shouted down during talks. This increasingly hostile environment threatens to drive some scientists out of the field altogether—something Botha says they have seen firsthand among autistic researchers.

“People are getting reluctant to give public presentations or to be too vocal about what they’re finding,” says David Amaral, a neuroscientist at the University of California, Davis, who is nonautistic. “Science is supposed to be about communication.” He wrote a December editorial in Autism Research, for which he is editor-in-chief, calling for civility across the board.

Misleading Headlines

In The Politics of Autism, I write:

If the science were not confusing enough, its coverage in the mass media has added another layer of murk. News reports hype tentative findings and weak correlations as “breakthroughs” in the quest for autism answers. When the research yields mixed results, the media headlines can be comically inconsistent. Consider how various publications covered a 2013 study on the impact of in vitro fertilization:

• RARE IN VITRO TECHNIQUE RAISES AUTISM RISK, STUDY SAYS
• IVF PROCEDURES DO NOT BOOST AUTISM RISK
• SOME FORMS OF IVF LINKED TO AUTISM, MENTAL DISABILITY
• IVF, AUTISM NOT LINKED, BUT STUDY FINDS RISK OF INTELLECTUAL DISABILITY[i]

[i] John J. Pitney, Jr., “IVF, Autism, and Headlines,” Autism Policy and Politics, July 2, 2013. Online: http://www.autismpolicyblog.com/2013/07/ivf-autism-and-headlines.html; “Autism and IVF: More Contradictory Headlines,” Autism Policy and Politics, July 3, 2013. Online: http://www.autismpolicyblog.com/2013/07/autism-and-ivf-more-contradictory.html

A recent study found an increase in autism diagnoses in the New York-New Jersey metro area. The study took pains to note that the change largely reflects greater awareness and improved diagnostic techniques.  News reports, however, generalized the results to the entire country.  Although most of the media articles mentioned the likely reasons for the change, the headlines often suggested that true prevalence had increased.  

Autism is not necessarily becoming more common.  Rather, we recognize it more often, which is different.  

 WCNC-TV in Charlotte, NC:

Why is autism becoming more common?

Why is autism becoming more common?


Let's connect the dots.

Autism spectrum disorder is a developmental disability that can cause social, communication, or behavioral challenges. New research from Rutgers found autism rates tripling in 8-year-olds since 2000.

Now, one in 44 kids across America is being diagnosed with ASD and
that's because there's a greater awareness of the disorder, as well as improvements in diagnostic tools and education.

But one thing is for sure, the CDC and National Academy of Medicine found no evidence autism is caused by vaccines. The surge in diagnoses comes during a nationwide shortage of special education teachers and staff.

The pandemic is also making things worse as parents were less able to get their children a diagnosis or assistance. Experts warn that could have more long-term consequences. They add early intervention can be key to helping autistic kids and folks with other special needs reach their full potential.