Improving the Employment Prospects of Autistic People: A Pilot Study

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

At Autism, Mary J Baker-Ericzén and colleagues have an article titled "Development of the Supported Employment, Comprehensive Cognitive Enhancement, and Social Skills Program for Adults on the Autism Spectrum: Results of Initial Study."  The abstract:

The population of adults on the autism spectrum continues to increase, and vocational outcomes are particularly poor. Longitudinal studies of adults with autism spectrum and without intellectual disability have shown consistent and persistent deficits across cognitive, social, and vocational domains, indicating a need for effective treatments of functional disabilities as each impact employment. This initial pilot study is an open trial investigation of the feasibility, acceptability, and initial estimates of outcomes for the newly developed Supported Employment, Comprehensive Cognitive Enhancement, and Social Skills intervention, a manualized “soft skills” curriculum, to enhance both cognitive and social development in adults with autism spectrum. A total of eight adults with autism spectrum, without intellectual disability (78% males), participated in the study. Results support the original hypothesis that adults with autism spectrum can improve both cognitive (i.e. executive functioning) and social cognitive (i.e. social thinking and social communication) abilities. Further Supported Employment, Comprehensive Cognitive Enhancement, and Social Skills was found to be feasible, acceptable, and highly satisfactory for participants and parents. Employment rates more than doubled post-intervention, with an increase from 22% to 56% of participants employed. Conclusion is that Supported Employment, Comprehensive Cognitive Enhancement, and Social Skills has promise as an intervention that can be easily embedded into exiting supported employment vocational training programs to improve cognitive, social, and vocational outcomes.

Perspectives on Transition Outcomes

The Politics of Autism explains that autism services can be complicated, creating difficulties for autistic people and their families.  Uncertainty another major theme of the  book.  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.

At Autism, an article titled "Parents’ and Young Adults’ Perspectives on Transition Outcomes for Young Adults with Autism," by Collette Sosnowy, Chloe Silverman, Paul Shattuck.

The abstract:

Existing research shows that young adults with autism spectrum disorder have poorer outcomes than their peers with other developmental disabilities in the key areas of independent living, postsecondary education, and employment. However, we understand little about how young adults with autism and their families understand and value outcomes and whether these indicators match their goals and aspirations. We interviewed parents (n = 21) and young adults with autism spectrum disorder (n = 20) about their experiences with the transition to adulthood to understand what they consider to be desirable outcomes and how they seek to achieve them. Understanding these perspectives will help identify areas of need as well as disconnections between service objectives and the goals of young adults and their families. Participants described outcomes as more complex and nuanced than current conceptions and measures account for. They defined and evaluated outcomes in relation to their or their child’s individual abilities, needs, and desires. These findings provide important insight into challenges to and facilitators of desired outcomes, which has implications for programming, service delivery, and policy.

Back to the cliff. From the study:

The finding that young adults and parents see services and supports as inadequate is not surprising, given the significant drop-off in services after high school. This study suggests that services that are currently available may be inadequate in part because they do not align with young adults’ and parents’ priorities and do not offer the kind of help they need to support the transition to adulthood. Overall, both parents and young adults made it clear that supports and services needed to be flexible enough to meet individual needs and be more comprehensive, continuous, and integrated in order to be most useful. However, few services and supports work this way, and it is a challenge for the field to address this need.

Segregating Disabled Georgians

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

From The Center for Public Representation:

On October 11, 2017, parents of children with disabilities, the Center for Public Representation, the Bazelon Center for Mental Health Law, the Georgia Advocacy Office, The Arc, DLA Piper LLP, and the Goodmark Law Firm filed a class action lawsuit in federal court alleging that the State of Georgia has discriminated against thousands of public school students with disabilities by providing them with a separate and unequal education via the State’s Georgia Network for Educational and Therapeutic Supports Program (GNETS). The complaint, filed in United States District Court for the Northern District of Georgia, alleges that the State, in denying GNETS students the opportunity to be educated with their non-disabled peers in neighborhood schools violates the Americans with Disabilities Act, Section 504 of the Rehabilitation Act of 1973, and the Fourteenth Amendment to the United States Constitution. Read this fact sheet or press release to learn more about the lawsuit.

The state of Georgia is unique in having established a state-wide educational program—GNETS—that systematically segregates students with behavioral disabilities across the state. Over 5,000 students with disabilities, the disproportionate majority of whom are students of color, have been sent to the GNETS centers. Most of the GNETS centers are housed in completely separate schools (including some that were formerly schools for African-American students in the Jim Crow days). Other GNETS centers are inside regular schools but typically are housed in locked wings or have separate entrances, effectively operating as a separate school within the school. GNETS students are not only segregated from their non-disabled peers but also receive an inferior education.

Typically, GNETS students are not taught by certified teachers; many are primarily taught through computers. Students cannot access the basic classes they need to earn a diploma, resulting in a graduate rate of GNETS students of only 10% (compared to a statewide rate of 80%). Many GNETS centers do not provide access to basic school services like gyms, libraries, or science labs. In addition, GNETS students are deprived of important co-curricular opportunities that other students enjoy, such as playing sports or participating in the school play. Parents and students have described GNETS as similar to a prison, with no way out. Learn more about GNETS with these infographics or here.

In 2015, the U.S. Department of Justice investigated GNETS and found that it violates Title II of the ADA by (1) unnecessarily segregating students with disabilities from their peers and (2) providing opportunities to GNETS students that are unequal to those provided to other students throughout the state. The investigation eventually culminated in a 2016 lawsuit against the State, alleging that the State’s administration of the GNETS system violates the ADA by “unnecessarily segregating students with disabilities from their peers” and providing “unequal” education opportunity to GNETS students. On August 11, 2017, the DOJ’s lawsuit was put on hold pending a decision from the 11th Circuit Court of Appeals regarding DOJ’s authority to bring suit. Throughout, the State has continued to defend the GNETS program.

A broad coalition of disability, educational, mental health, child welfare, juvenile justice, civil rights and parent and youth advocacy groups from across Georgia have joined together around shared concerns about the GNETS program. Learn more about the Georgia Coalition for Equity in Education.

If you have questions about this lawsuit or need assistance related to GNETS, contact the Georgia Advocacy Office by phone at (404) 885-1234 (or toll-free in Georgia at 1-800-537-2329) or by email at info@thegao.org.

Trump's Executive Order

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

Yesterday, Trump signed an executive order on health care.

Kyli Rodriguez-Cayro writes at Bustle:

[On] Oct. 12, Trump signed a health care executive order meant to undermine and dismantle Obamacare. According to CNN, the executive order “would allow consumers to buy short-term policies, which don't have to comply with Obamacare's protections for those with pre-existing conditions.” Essentially, with this executive order, many disabled people, and the protections they receive through the ACA, will be seriously impacted.

Trump’s executive order is predicted to be part of a larger plan to gut Obamacare — a plan being called a “synthetic repeal.” The term was coined on Twitter by Andy Slavitt, who served as Acting Administrator for the Centers for Medicare & Medicaid Services during the last two years of Obama’s presidency. Slavitt believes following the Oct. 12 order, the Trump administration will continue to destabilize the health marketplace — without the help of Congress — until the ACA fails. In response to Trump’s executive order and the possible backdoor repeal, Bustle spoke with Stacy Stanford, a disability rights advocate and community organizer who works with Utah Health Policy Project.

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Though the executive order and possible “synthetic repeal” will negatively affect many marginalized communities, it poses an especially great risk to people with disabilities. Stanford tells Bustle, “Introducing more options for healthy people to buy less-comprehensive coverage, removed from the protections of the Affordable Care Act, only increases the burden on sick and disabled people.” By effectively giving non-disabled people the choice to buy insurance plans that include less coverage, premiums for disabled people will increase dramatically.

From ASAN:

The Autistic Self Advocacy Network (ASAN) condemns the executive order issued by President Trump today attacking critical protections for people with disabilities in the Affordable Care Act (ACA). The executive order would make it easier for insurance companies to discriminate against people with pre-existing conditions, and could allow insurers to sell junk coverage that doesn’t cover critical services and won’t protect people from soaring health care costs. The American people have clearly and repeatedly rejected this kind of proposal. As ASAN has stated in the past, any future attempts at health care reform must meet the needs of all Americans, leave the Medicaid program intact, and proactively include the disability community from the beginning of the process. ASAN calls on the Trump administration to listen to the voices of everyday Americans, stop attempting to sabotage the ACA, and support a bipartisan process in Congress. Our government must work to develop thoughtful and carefully considered proposals that make healthcare better for everyone and increase access to quality, affordable coverage rather than endangering the lives of people with disabilities.

Study: Kids from Poor Neighborhoods Are Less Likely to Get an Autism Diagnosis

In The Politics of Autism, I write about the experiences of different economic, ethnic and racial groups.   Inequality is a big part of the story. Affluent school districts have more resources than poor ones.  Educated professionals are better able to protect their children's interests than poor people who never went to college.

A release from the University of Wisconsin-Madison

Children living in neighborhoods where incomes are low and fewer adults have bachelor's degrees are less likely to be diagnosed with autism spectrum disorder compared to kids from more affluent neighborhoods.

The finding is part of a new multi-institution study of autism spectrum disorder(ASD), led by Maureen Durkin of the University of Wisconsin-Madison's Waisman Center, and published recently in the American Journal of Public Health.

Durkin and her team found that the incidence of the disorder increased during the study period. In fact, during the eight years of the study, the overall prevalence of ASD in children more than doubled, increasing from 6.6 to 14.7 cases per thousand children.

"We wanted to see if part of this increase in ASD prevalence was because advances in screening techniques and medical training meant more children from disadvantaged backgrounds were gaining access to ASD diagnoses and services," says Durkin, a professor of population health sciences and pediatrics at UW-Madison. "It doesn't seem that's the case."

Her team analyzed education and health care data for 1.3 million 8-year-old children from a Centers for Disease Control and Prevention population-based surveillance program, with sites in 11 states across the U.S.: Alabama, Arizona, Arkansas, Colorado, Georgia, Maryland, Missouri, New Jersey, North Carolina, Utah and Wisconsin.

The study merged this autism surveillance data with U.S. Census measures of socioeconomic status, such as number of adults who have bachelor's degrees, poverty and median household incomes in the census tracts studied.

It found that regardless of which indicator of socioeconomic status the researchers used, children living in census tracts with lower socioeconomic development were less likely to be diagnosed with ASD than children living in areas with higher socioeconomic indicators.

While not the first study to highlight socioeconomic differences in rates of autism diagnosis, "the continued increase in prevalence of ASD makes understanding its epidemiology critical to ensure services are reaching the children who need them the most," says Durkin.The study does not prove children from lower socioeconomic backgrounds are not getting the diagnoses and support they need, Durkin says, but it does indicate that's the most likely scenario.

In support of this hypothesis, the study found that children who had intellectual disabilities were equally likely to be diagnosed with ASD irrespective of their socioeconomic backgrounds.

That could be because "children with intellectual disabilities usually have developmental delays that get noticed earlier in life," says Durkin. "They may get referred for comprehensive medical follow-ups, which could then lead to a diagnosis of their ASD as well."

In addition, studies in Sweden and France—which have universal health care and fewer barriers for citizens to access medical care—found no association between socioeconomic status and rates of autism diagnoses.

These findings collectively support the idea that children living in poorer or less well-educated areas are being diagnosed with ASD at lower rates because they have less access to health care providers who could make the diagnosis and provide needed support.

Effects of Insurance Mandates

The Politics of Autism includes an extensive discussion of insurance and the regulation of autism service providers.

Colleen L. Barry, Andrew J. Epstein, Steven C. Marcus, Alene Kennedy-Hendricks, Molly K. Candon, Ming Xie, and David S. Mandell have an article at Health Affairs titled "Effects Of State Insurance Mandates On Health Care Use And Spending For Autism Spectrum Disorder."

The abstract:

Forty-six states and the District of Columbia have enacted insurance mandates that require commercial insurers to cover treatment for children with autism spectrum disorder (ASD). This study examined whether implementing autism mandates altered service use or spending among commercially insured children with ASD. We compared children age twenty-one or younger who were eligible for mandates to children not subject to mandates using 2008–12 claims data from three national insurers. Increases in service use and spending attributable to state mandates were detected for all outcomes. Mandates were associated with a 3.4-percentage-point increase in monthly use and a $77 increase in monthly spending on ASD-specific services. Effects were larger for younger children and increased with the number of years since mandate implementation. These increases suggest that state mandates are an effective tool for broadening access to autism treatment under commercial insurance.

From a release by the Johns Hopkins University Bloomberg School of Public Health:

"The hope of patient advocates and policymakers was that these insurer mandates would increase care for children with autism, and they seem to have done that—in fact, the impact was even larger than we had expected," says Colleen L. Barry, PhD, MPP, the Fred and Julie Soper Professor and Chair of the Department of Health Policy and Management at the Bloomberg School.

The results, Barry adds, are important for states that have enacted such mandates to understand their impact, and also helpful for states considering whether to broaden mandates that are already in place. Barry is also affiliated faculty with the Johns Hopkins Wendy Klag Center for Autism and Developmental Disabilities at the Bloomberg School.

...
Recent federal laws including the Affordable Care Act have introduced nationwide coverage mandates, including "parity" mandates requiring that coverage of mental health care be equal to coverage of general health care. But how closely these regulations apply to behavioral therapies for ASDs is still being debated—even litigated—among insurers and patient advocacy groups.

"Concern that children with autism were not able to access services through private insurance even in the context of parity laws was one reason why patient advocates have pushed for these state mandates that apply specifically to autism coverage," Barry says.

California Governor Signs Bill to Make ABA More Available

The Politics of Autism includes an extensive discussion of insurance and the regulation of autism service providers.

A release from the Center for Autism and Releated Disorders:

California Governor Jerry Brown has signed Assembly Bill 1074, a bill authored by Assembly Member Brian Maienschein (R- San Diego) and co-sponsored by California Association for Behavior Analysis (CalABA) and the Center for Autism and Related Disorders (CARD). The bill received overwhelming support from both the California Assembly and Senate.

AB 1074 makes critical updates to California’s autism mandate, already regarded as one of the strongest in the nation. In addition to technical changes, AB 1074 removes the requirement for autism treatment professionals to be vendored with a state regional center and clarifies that evidence-based autism treatment includes clinical case management. Additionally, the bill removes a 6-month experience requirement for paraprofessionals who work one-to-one with individuals affected by autism spectrum disorder (ASD), a requirement that has limited the capacity of California’s autism treatment providers to meet the needs of California’s autism community.

“I’m gratified to have had the opportunity to increase access to treatment for individuals affected by autism. This bill clarifies California’s autism mandate to ensure behavioral health providers are not hindered by outdated requirements,” said Assembly Member Maienschein.

The bill’s co-sponsors worked together with Assembly Member Maienschein to identify how to increase access to evidence-based autism treatment without jeopardizing treatment quality or consumer safety.

“We are so thankful for Assembly Member Maienschein’s dedication to California’s autism community. AB 1074 ensures that individuals affected by autism have access to medically necessary treatment and that providers can increase their capacity to provide services without diluting treatment quality,” said Doreen Granpeesheh, Ph.D., BCBA-D, executive director and founder of CARD.

California is home to more autism treatment providers than any other state; yet, individuals diagnosed with ASD often encounter delays and waiting lists when seeking medically necessary treatment.

About California Association for Behavior Analysis (CalABA)
California Association for Behavior Analysis (CalABA) is the professional membership association representing behavior analysts in California. CalABA is dedicated to advancing, promoting, and protecting the science and practice of behavior analysis. For more information, visit http://www.calaba.org. 

About Center for Autism and Related Disorders (CARD)
CARD treats individuals of all ages who are diagnosed with autism spectrum disorder (ASD) at treatment centers around the globe. CARD was founded in 1990 by leading autism expert and clinical psychologist Doreen Granpeesheh, PhD, BCBA-D. CARD treats individuals with ASD using the principles of applied behavior analysis (ABA), which is empirically proven to be the most effective method for treating individuals with ASD and recommended by the American Academy of Pediatrics and the US Surgeon General. For more information, visit http://www.centerforautism.com or call (855) 345-2273.