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Sunday, May 27, 2018

Rochester

In The Politics of Autism, I write:
A child’s chances of getting an autism label vary by geography as well as social class. On a broad level, state definitions of autism are consistent with the federal definition. At the practical level, there are differences, especially when it comes to assessing social and emotional development, health, vision, hearing, and motor skills. In 2011, seven percent of students receiving IDEA services nationwide had an autism determination. But the figures varied by state. The states with the highest share of IDEA students with identified autism were Minnesota (12.8 percent), Oregon (10.6 percent), and Connecticut (10.1 percent). The lowest were Iowa (1.1 percent), Puerto Rico (2.1 percent), Montana (2.8 percent), Oklahoma and West Virginia (3.7 percent each).

Lauren Peace and Justin Murphy at the Rochester Democrat and Chronicle report that the city has become a magnet for out-of-state autism families.
The clinical work being done at the University of Rochester Medical Center gives Rochester families access to world-class care, but its main points of difference are the community partnerships in the area, between health providers and families, as well as a powerful support system developed by parents, for parents.
"Families of children with autism and self-advocates have really pushed the national agenda," said Susan Hyman, chief of developmental and behavioral pediatrics at UR Medicine's Golisano Children's Hospital. "The Rochester community has a tradition of collaboration with the university in a very effective fashion, so we have a novel and collaborative interaction that really enhances the seamless service delivery."
URMC is one of 13 sites across North America, and the only site in New York that's a member of the natiowide Autism Treatment Network (ATN).
Dennis Kuo, an associate professor and division chief in general pediatrics at the University at Buffalo, said that ATN sites are special because of the multidisciplinary and coordinated approach they take to care.
...
"Having an ATN site in Rochester ensures the latest updates in autism treatment are both offered and delivered effectively," he said. "The ATN’s approach is to break these silos down."
But there are serious problems.  Poor and minority families lack access to information and social networks, leading to delays in diagnosis and service delivery.
Beyond disparities in information, poor families in Rochester suffer from long-standing inequities in access to the minimum standard of care mandated by federal law and disparities in how special needs students are classified through school.

The Rochester City School District may be the worst in the United States in terms of educating its children with disabilities. It spent more than 20 years under a federal consent decree and faces the prospect of another.

The reason, in part, is that the district has a much greater concentration of those students than either suburban or charter schools. RCSD educates about 25 percent of Monroe County children, but 39 percent of those living with disabilities.

Even within those numbers, racial gaps are evident — white children in RCSD are classified with autism at about twice the rate of black children, who are much more likely to be counted under the catch-all category of “other health impairment.”

Saturday, May 26, 2018

Shire House

In The Politics of Autism, I write:
When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. ... People in the disability community refer to this point in life as “the cliff.” Once autistic people go over the cliff, they have a hard time getting services such as job placement, vocational training, and assistive technology. IDEA entitles students to transition planning services during high school, but afterwards, they have to apply as adults and establish eligibility for state and federal help. One study found that 39 percent of young autistic adults received no service at all, and most of the rest got severely limited services.
What happens when young autistic people hit the cliff?  Reggie Aqui reports at KGO-TV:
Liz Kane had that question about her son, Paul. "Paul was special needs, he was challenging in many ways," Kane said. The upside to Paul's diagnosis as a child was that he had a host of experts to help him on his path. That is, until he grew up. "I didn't realize until he graduated that the next week all the appointments he was going to were no longer available," Kane said.
Without a clear path, Kane decided to create a solution. She started a home in San Jose for young adults, like her son, with high-functioning autism. It would be a place where they could live away from their families but still have support services to teach them how to transition to independent living. She called it Shire House.
"By the time he (Paul) was in high school, I considered myself an expert and that was why I was okay to manage other young adults through the same issues my son had experienced," Kane said.
Six years later, she's helped 30 young people with autism successfully transition out of Shire House and into the next phase of their adult lives.

Friday, May 25, 2018

Cautions About Prevalence Data

 In The Politics of Autism, I discuss the uncertainty surrounding estimates of autism prevalence

At Scientific American, Darold A. Treffert takes a skeptical look at a recent CDC report suggesting an autism prevalence of 1 in 59.
When the report came out, the headlines read along the lines of “Autism cases continue to rise: now 1 in 59 children have autism.” But let’s look at that CDC study more critically. It is based on an active surveillance system established in 2000 that estimates autism spectrum disorder (ASD) among children age 8 years living in 11 states.

Using that system, the prevalence of autism (ASD) rose from 1 in 150 children in 2000–2002, to 1 in 68 children during 2010–2012 and 1 in 59 children in 2014. That means the prevalence of autism more than doubled in the 12-year period between 2000 and 2012 and increased nearly 16 percent just in the two-year period between 2012 and 2014.
That is preposterous. From 1 per 150 children to 1 per 59 children with autism in slightly more than a decade? No wonder headlines speak of an “epidemic.” Are these believable figures, or might it be because we keep diluting the condition and expanding the definition, and in so doing we keep moving the goalposts? I believe that to be the case.
There are problems that cast doubt on that method and those numbers for actual prevalence of ASD. Figures include “educational autism,” which is a diagnosis made by teachers or educational specialists in the classroom and “medical autism,” based on review of available medical records. There are no actual in-person evaluations. Casting more doubt is the fact that the prevalence in one state, Arkansas, was 1.31 percent but more than double that in another, 2.93 percent in New Jersey. The prevalence in Wisconsin rose 31 percent between 2012 and 2014. Is that a believable actual increase in ASD in two years in Wisconsin?

Wednesday, May 23, 2018

A Lawsuit in South Carolina

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

Jamie Self reports at The State:
S.C. children in need of intensive autism treatment cannot find therapists, and the state's Medicaid agency is to blame, according to a federal lawsuit that alleges the state is driving therapists away by failing to pay them enough.
The lawsuit was filed by Ashley Manley, a Lexington mother whose 6-year-old son has been waiting for more than two years to get more than 40 hours a week of in-home, intensive therapy. A doctor prescribed the therapy for the child after he was diagnosed with Autism Spectrum Disorder.
South Carolina's reimbursement rates for autism therapists are so low that they cannot afford to treat patients covered by Medicaid, the joint federal-state insurance program for the poor and disabled, according to the lawsuit. The suit, filed last week, names the S.C. Department of Health and Human Services and its director, Josh Baker, as defendants.

As a result of those low rates, some S.C. therapists refuse to accept Medicaid patients for the autism treatment, leading to a scarcity of therapists and long waits for their services, the suit alleges.

Tuesday, May 22, 2018

Eating Fish During Pregnancy Does Not Cause Autism

In The Politics of Autism, I discuss various ideas about what causes the condition.  Although the list of correlates and risk factors is long, scientists have ruled some things out.

A major study examining the fish-eating habits of pregnant women has found that they are not linked to autism or autistic traits in their children.

Scientists at the University of Bristol looked at the assumption that mercury exposure during pregnancy is a major cause of autism using evidence from nearly 4500 women who took part in the Children of the 90s study.

Using analysis of blood samples, reported fish consumption and information on autism and autistic traits from one of the largest longitudinal studies to date, researchers found no links between levels of mercury in the mothers and autism or autistic traits in their children. The only adverse effect of mercury found was poor social cognition if mothers ate no fish at all, especially for girls.

Lead author and founder of the Children of the 90s study Professor Jean Golding commented: “Our findings further endorse the safety of eating fish during pregnancy. Importantly we’ve found no evidence at all to support claims that mercury is involved in the development of autism or autistic traits.

“This adds to a body of work that endorses the eating of fish during pregnancy for a good nutritional start to life with at least two fish meals a week.”

In October 2017 the University of Bristol presented a policy briefing document to government departments explaining that current advice for pregnant women is complex and confusing and may encourage women to limit or avoid eating fish altogether.

Wellcome Trust Research Fellow at the University of Bristol Dr Caroline Taylor contributed to both the new research and policy document and added: “All species of fish contain traces of mercury, which can harm brain development, but we’ve found that the health benefits of fish, probably from nutrients such as vitamin D, omega-3 fatty acids, selenium and iodine, outweigh the risks from mercury.

“The advice on eating fish when pregnant is complicated and overwhelming. There is now a body of evidence to support a simpler and clearer approach that maximizes the health benefits of fish. “I believe the next step is for a comprehensive study into how the current guidelines have affected the consumption of fish in pregnant women overall.”

Director of the National Autistic Society’s Centre for Autism, Carol Povey said: “At The National Autistic Society, we welcome all research which furthers our understanding of autism. This is a robust study which confirms what previous research has found: it is a myth that high mercury levels in pregnant mothers cause autism.

“There are around 700,000 autistic people in the UK and, although the exact causes of autism are still not fully understood, research to date has shown it involves many complex and interacting factors, including genetics, the environment and the development of the brain.

“While it is important to understand the causes of autism, we believe more research should be focused on what helps autistic people and their families so that all autistic people can have a good quality of life and get the support and understanding they need.”

Monday, May 21, 2018

Trump, Autism, Vaccines, Gates

 In The Politics of Autism, I discuss the issue's role in presidential campaigns.   In the 2016 campaign, a number of posts discussed Trump's support for the discredited notion that vaccines cause autism.  He also has a bad record on science and disability issues more generally.

In 2017, Trump seemed to have forgotten his position, but the myth was apparently still on his mind.

 Josh Keefe at Newsweek:
In newly released footage from a Bill and Melinda Gates Foundation event, Microsoft co-founder Bill Gates said President Donald Trump told him he was considering a commission to look into the “bad effects” of vaccines. "Don't do that," Gates said he told the president, and Trump has never publicly proposed such a commission. Yet the incident recalls Trump's longtime skeptical comments about vaccines.

Gates said that in two separate meetings since he was elected, Trump asked the billionaire philanthropist if “vaccines weren’t a bad thing.”

“He was considering a commission to look into the bad effects of vaccines and somebody, I think his name was Robert Kennedy Jr., was advising him that vaccines were causing bad things,” Gates recalled. “And I said ‘No, that's a dead end, that would be a bad thing, don’t do that.”

Sunday, May 20, 2018

Disabilities and the Defeat of the Farm Bill

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

The Autism Society and other disability groups strongly opposed the Farm Bill, mainly because of its provisions on SNAP, aka food stamps.  The bill went down 198-213. A statement from House Democratic Leader Nancy Pelosi mentioned the role of disabilities:
On a bipartisan basis, the House rejected a bad bill that failed farmers and working families.  Republicans wrote a cruel, destructive Farm Bill that abandoned farmers and producers amid plummeting farm prices and the self-inflicted damage of President Trump’s trade brinkmanship.  Their heartless bill would have slashed $23 billion in SNAP benefits for children, seniors, students, 1.5 million veterans, 23,000 servicemembers, individuals with disabilities and working families.

Saturday, May 19, 2018

Disability Integration Act

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

A May 16 release from ADAPT:
Approximately 200 disability rights activists representing the national grassroots disability rights group ADAPT took to Capitol Hill today to urge members of Congress to work to pass the Disability Integration Act (DIA) (S.910/HR.2472) and continue the Money Follows the Person (MFP) program through the EMPOWER Care Act (S.2227/HR.5306). The DIA would ensure that any person with a disability who qualifies to live in an institution will also qualify for services to live independently in the community, and continuing MFP would ensure a funding stream continues to be available for transition to community living from institutions.
The DIA, crafted by ADAPT and allies of disability rights, fulfills a sacred mission; “The DIA upholds our Constitutional rights to life, liberty, and the pursuit of happiness,” said Tom Earle, an organizer with the Philadelphia chapter of ADAPT.
Today, members of ADAPT are sharing a simple message with their elected officials: There is broad bipartisan support for DIA, more than 700 organizations nationwide are in support. “Conservative, progressive, bipartisan, nonpartisan, whatever…. We can all agree that DIA needs to happen,” said Josue Rodriguez, an organizer with El Paso ADAPT.
The bipartisan backing of the bill was apparent yesterday when Center for American Progress (CAP) the only progressive think tank with a dedicated Disability Unit, endorsed DIA. In a statement read by Rebecca Cokley, CAP Senior Fellow for Disability Policy, CAP said “Disturbingly, nearly three decades after the Americans with Disabilities Act was signed into law, too many Americans with disabilities are still fighting for the right to live independently rather than in isolating institutions. This must end. CAP commends ADAPT for its leadership in raising awareness about this injustice and is proud to support the Disability Integration Act.” At about the same time yesterday, the conservative think tank the Heritage Foundation issued a statement of support for the bill and its principles.
ADAPT has also been active on the Hill this week. On Monday, they went to both the Chairman and Ranking Member of the Senate HELP committee seeking co-sponsorship. Senator Patty Murray engaged the group and, after discussion with the ADAPT members in her office, she agreed to sign on. Meanwhile, there were 51 arrests in Senator Alexander’s office. ADAPT is hopeful that the week of bipartisan efforts will reap benefits in terms sponsors across the political spectrum.
“It’s a bill everyone likes. Given the broad support from both parties, we don’t understand why it hasn’t passed yet,” said Mr. Rodriguez.
For decades ADAPT has worked to secure for disabled Americans the same rights and liberties enjoyed by their non-disabled neighbors. Learn more about ADAPT’s history and activities at www.adapt.org, on social media with the National ADAPT Facebook and Twitter pages. Also, under the hashtag #ADAPTandRESIST.

Friday, May 18, 2018

House Hearing on Disability Employment

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

A May 9 release from the House Small Business Committee:
Today, Members of the House Committee on Small Business heard testimony from a panel of small business owners and experts on developmental disabilities on how those with differing abilities have an essential role in the small business economy.
...
“While employment opportunities for people with disabilities have substantially improved since the Great Recession, the gap, in comparison to those without disabilities, continues to persist at almost the same rate,” stated Angela Geiger, President and CEO of Autism Speaks in Washington, DC. “However, despite the continued low rates of disability employment, progress is being made. In the last year, employment rates for people with disabilities have increased (up from 32.3 percent in March 2017). Disability employment has increased steadily over the last 24 months. The rate of increase for workers with disabilities is greater than the rate for people without disabilities.”
“Many people with autism possess skills that are valuable for today's economy. Often, they possess intense focus, comfort with numbers and process, and a passion for repetitive, process-intensive tasks,” said David Friedman, Founder and CEO of AutonomyWorks in Downers Grove, IL. “In the next decade, the workplace will be flooded with over half million adults with autism – talented and eager to work. Small businesses generate a large percentage of new jobs across the United States. Small businesses must be a core part of any solution to the employment challenges facing adults with disabilities.”
“We are witness to the dramatic positive impact have a job has on our employees. We see the significant decrease in challenging behaviors, an increase in job skills, dexterity, communication, life skills, and confidence,” said Lori Ireland, President of Ireland Family Foundation and Founder of Extraordinary Ventures, in Chapel Hill, NC. “There is no question that employment is beneficial and a worthy cause to fight for.”
 Full video can be found here and full testimony can be found here.

Thursday, May 17, 2018

CAP on SNAP

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

From the Center for American Progress:
The proposed Farm Bill would force SNAP recipients to fill out an onslaught of paperworkin order to track and report their work-related activity from month to month. Currently, most states request paperwork along these lines every six months. For individuals who fail to properly submit this monthly documentation, sanctions under the draft Farm Bill are particularly punitive: They may lose SNAP benefits for 12 to 36 months. That is up to three years without food assistance for just two paperwork-related errors, such as failure to document all of one’s hours worked in a given month—which could be in multiple jobs—or a failure to submit the documentation on time.
While this paperwork would be labor-intensive for any participant, it may be especially difficult to navigate for people with certain intellectual and developmental disabilities or mental health conditions. People with disabilities are also at risk for a years-long lockout simply because they did not understand that they were eligible for an exemption; were ineligible for an exemption under SNAP’s very narrow definition of disability; or were unable to provide the necessary documentation—such as physician testimony or medical records—to prove that they qualified for an exemption. This last hurdle is especially problematic for those who lack health insurance or live in one of the 18 states that have not yet expanded Medicaid under the Affordable Care Act. Disabled workers are also more likely to be self-employed than nondisabled workers, and documentation of self-employment is particularly burdensome.

Wednesday, May 16, 2018

A Shortage in North Carolina

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  In many states -- particularly those with large rural populations -- one problem is a shortage of behavior therapists.

North Carolina has a shortage of the highly-educated professionals that can develop and oversee the therapies, with just 327 board-certified behavioral analysts (BCBAs) in North Carolina, according to the Behavior Analyst Certification Board. BCBAs must have a masters-level education, undergo extensive training, and pass rigorous board exams to receive their certification. While the BCBAs create treatment plans, mostly registered technicians carry out the day-to-day work of implementing that plan for the child with autism. North Carolina has just 812 of these registered behavioral technicians.
,,,

The main barrier to recruitment has been because of North Carolina’s requirement that a psychologist oversees ABA therapies, a practice unique to North Carolina, said Lorri Unumb, Autism Speaks’ vice president for state government affairs.
Many BCBAs have undergone intensive training and find the oversight unnecessary and time consuming, Unumb said. It is also difficult to find psychologists who want to do that type of work.
Autism Speaks and other groups are pushing to have the state legislature remove the psychologist oversight, in hopes it will lead to more ABA providers.
“Until that issue gets fixed, you’re never going to have good access” to ABA therapies, Unumb said.

Tuesday, May 15, 2018

SNAP and Disability

In The Politics of Autism, I discuss health care issues and  social services for people with intellectual and developmental disabilities.
Republicans say: Individuals with disabilities are exempt from the proposed work requirements, so none of them would lose SNAP benefits under the GOP plan.
Democrats say: The bill does not account for people with disabilities or chronic conditions who lack the necessary medical exemption or documentation, and, they say, those who can’t navigate the exemption process will lose SNAP benefits.
The facts: The bill specifically exempts from its work requirements those who are “medically certified as mentally or physically unfit for employment,” same as the current law.
[Henry] Connelly, a spokesman for Pelosi, said the bill’s new reporting requirements will present hurdles for “people with disabilities who struggle to meet that exemption already.” Obtaining this documentation can be very difficult, he said, “especially for those who want to avoid the risk of being permanently ‘unfit’ for work instead of temporarily, or live in states where they do not have access to health coverage or their state does not provide access to transportation, personal care services, employment services, and more.”
“It may seem simple to assert that ‘people with disabilities will be exempt,’ but converting such a statement into an effective policy process is complicated, expensive, and fundamentally flawed,” the group Consortium for Citizens with Disabilities wrote in a letter sent to the House Committee on Agriculture. “Many people with disabilities receive SNAP, but do not meet SNAP’s statutory definitions of ‘disability’ or have not been so identified. Under SNAP, states have no obligation to help people prove they are exempt, even if they have difficulty obtaining the necessary records or verification from a doctor.”
As an example, the group points to a survey of SNAP participants in Franklin County, Ohio, which found that among able-bodied adults without dependents — those subject to work requirements/time limits — a third self-reported “some type of physical or mental limitation.”
“New reporting requirements would create major hurdles to benefits,” the Consortium for Citizens with Disabilities wrote. “Proposed new reporting requirements related to eligibility, employment and training, and time limits would be extremely difficult for many people with disabilities to navigate and comply with.”

Monday, May 14, 2018

Trump v. People with Disabilities


David Cross at USA Today:
The White House hosted a ceremony April 27 to celebrate U.S. Paralympic athletes. But rather than honor them, Trump remarked that they are “a little tough to watch too much, but I watched as much as I could.” Some were quick to defend Trump’s comments, arguing that they may not have been derogatory. Such generous interpretations, however, ignore two realities: Trump’s own prior disparagement of disabled people (among many others) and just how close to home his particular remark regarding the Paralympics hits with those of us who are disabled.
I was born without a left hand. I’ve never known life without a disability. Being physically different from those around you, and in such an obvious way, can be a deeply isolating feeling. That feeling is exacerbated by the realization — or at least perception — that others view you not only as less capable than them, but as abnormal. Trump’s callous remark regarding the Paralympics was a harsh reminder of this reality and what disabled people experience nearly daily.

Sunday, May 13, 2018

Changing the Name of Asperger's Syndrome

In The Politics of Autism, I write about the dangers of eugenics and euthanasia.

In A Different Key, John Donvan and Caren Zucker found that Dr. Hans Asperger worked with Nazis in Austria.  We are now learning more details. 

Edith Sheffer, author of Asperger's Children, spoke to NPR's Michel Martin:
I came to this research because my son was diagnosed with autism and Asperger's syndrome. That's one of the reasons it's so complicated because the diagnostic criteria are overlapping. And like any parent, I read what I could about the diagnosis. And the blurbs that I found in parent manuals or online or on his Wikipedia page, as you said, described him in these heroic terms. My very first file that I looked at in the archives, however, was his district Nazi Party file that was reporting on his political reliability. And there were about 20 documents, and they're commenting on his support for the regime's racial hygiene measures, for his support for sterilization policy, racial policy. There was a document written by an SS officer saying that while Asperger was in a position to expose activities that were happening, he chose not to. So really, from the very first file. And to me, it's very surprising that this history has not come out yet.
...
There are a few reasons why I think we should get rid of the name. One has to do with medical ethics. Eponymous diagnoses are granted to honor individuals who are describing a condition for the first time and to commend their work as human beings. And in my opinion, Asperger merits neither. The second reason to rename the diagnosis is that it no longer exists as an official diagnosis according to the American Psychiatric Association. In 2013, it was reclassified as autism spectrum disorder. And so today, you can't receive a diagnosis of Asperger's syndrome in the United States. It remains an official diagnosis in other countries that go by the World Health Organization's standard, but even that is being reclassified because it's seen as indistinct from other criteria for autism.

Saturday, May 12, 2018

Autism Services: What You Get Depends on Where You Live

In The Politics of Autism, I write:
A child’s chances of getting an autism label vary by geography as well as social class. On a broad level, state definitions of autism are consistent with the federal definition. At the practical level, there are differences, especially when it comes to assessing social and emotional development, health, vision, hearing, and motor skills. In 2011, seven percent of students receiving IDEA services nationwide had an autism determination. But the figures varied by state. The states with the highest share of IDEA students with identified autism were Minnesota (12.8 percent), Oregon (10.6 percent), and Connecticut (10.1 percent). The lowest were Iowa (1.1 percent), Puerto Rico (2.1 percent), Montana (2.8 percent), Oklahoma and West Virginia (3.7 percent each).  
At The Journal of Disability Policy Studies, Sarah S. Mire, K. R. Hughes, Jamie K. Manis, Robin P. Goin-Kochel, have an article titled Autism Treatment: Families’ Use Varies Across U.S. Regions."  The abstract:
Many treatment types are available for children with autism spectrum disorder (ASD), and various factors affect treatment selection. This study investigated potential variations in treatment types selected by parents in all four U.S. Census Bureau Regions + Montreal, Quebec. Data from 2,647 families from the Simons Simplex Collection were analyzed, and statistically significant differences in using various treatment types were found, depending on where families lived. For example, compared with other Regions, families from the Northeast were more likely to have used most treatment types queried, whereas families from the South and Midwest were more likely to have used psychotropic medications. Statistically significant differences were also found within geographical regions. Understanding variations in the use of treatment types by families affected by ASD is important in identifying needs and opportunities for services in different locations. These findings have implications for addressing families’ treatment access and use when they are considered in terms of both research and practice policies.
From the article:
This may be in part related to where in the country children are more or less likely to receive an ASD diagnosis. In a recent large-scale analysis by Hoffman and colleagues
(2017), children born in New England (i.e., Northeast Region) had higher odds of ASD diagnosis, whereas children who lived in the central and southern (i.e., South Region) parts of the United States had lower odds. Similarly, in our study, almost all treatment types were significantly more likely to have been used by families from the Northeast
Region. On the contrary, families in the South Region were significantly more likely to report having never received treatment, though within this Region, the East South Central Division (includes Kentucky [KY], Tennessee [TN], Mississippi [MS], and Alabama [AL]) was the greatest contributor to this finding, which highlights the  importance of considering variations within (not only between) the large Regions of the United States. The alignment of our findings with those of Hoffman et al. (2017) underscores the relationship between diagnostic and treatment services. 
The interplay between research and practice policies, both of which affect ASD treatment, is complex. In 2016, the National Conference of State Legislatures (NCSL;
http://www.ncsl.org/research/health/autism-policy-issuesoverview.aspx) overviewed federal responses to increased ASD diagnostic prevalence which include federal acts (e.g., Autism CARES Act of 2014, Children’s Health Act of 2000, Combating Autism Act of 2006) that resulted in National Institutes of Health (NIH) and Centers for Disease
Control (Centers for Disease Control and Prevention [CDC]) research initiatives as well as in development of the national Interagency Autism Coordinating Committee (IACC). Ascertaining the direct impact of federal actions on individual families’ treatment selections is complicated, but federal policies ultimately do affect treatment, such as
through allocation of large-scale funding and resources. We consider our findings about ASD treatment patterns with regard to both research- and practice-related policies.
Hoffman, K., Weisskopf, M. G., Roberts, A. L., Raz, R., Hart, J. E., Lyall, K., . . . Vieira, V. M. (2017). Geographic patterns of autism spectrum disorder among children of participants in Nurses’ Health Study II. American Journal of Epidemiology, 186, 834–842. doi:10.1093/aje/kwx158

Friday, May 11, 2018

Opportunities for Improving Programs and Services for Children with Disabilities

Uncertainty and complexity are major themes of The Politics of Autism.

While a variety of services and programs exist to support the needs of children with disabilities and their families, a focus on achieving specific near- and long-term goals that help prepare for adulthood and coordination of care within and across service sectors are integral to encouraging healthy growth and development, says a new report from the National Academies of Sciences, Engineering, and Medicine. The committee that conducted the study and wrote the report examined federal, state, and local programs and services in a range of areas, such as health care, special education, transition to adulthood, vocational rehabilitation, and social needs care.
Although children with disabilities have a diverse range of health conditions, they share many of the same needs; therefore, the committee used a non-disease-specific approach to assessing programs and services designed to improve children’s outcomes. The life-course perspective acknowledges that early experiences impact later experiences and long-term outcomes, so it is important that near- and long-term goals are linked to the attainment of desired long-term outcomes and that services are individualized based on an assessment of the child’s and family’s specific needs, the report says. Several other characteristics contribute to the effectiveness of these programs and services, such as engaging children and families in their care, helping them navigate and connect with the array of available supports, and conducting rigorous, systematic evaluation and continuous improvement of services.

A variety of gaps and limitations create barriers to access and variable quality of services, the report says, such as socio-demographic and socio-economic disparities, state variation in the implementation of federal programs, fragmentation of services, insufficient workforce capacity and development, lack of preparedness for transitioning to adult services and programs, and gaps in continuity of care. The committee identified a number of ways to enhance the provision and quality of programs and services to improve health and functioning outcomes for children with disabilities.
Service fragmentation places a heavy burden on families of children with disabilities who need access to and coordination of high-quality services,” said committee chair Amy Houtrow, associate professor of physical medicine and rehabilitation and pediatrics at University of Pittsburgh, and vice chair of physical medicine and rehabilitation and chief of the Division of Pediatric Rehabilitation Medicine at Children's Hospital of Pittsburgh. “Even the most well-resourced and organized families indicate how daunting it is to navigate the various service sectors to ensure that their children get the care they need to thrive. As a society, we invest a lot in children and youth, and we should make sure those investments also enable children with disabilities to reach their full potential. We hope that the committee’s efforts to highlight the ample opportunities to improve programs and services will help inform future policy to advance service delivery for all with disabilities and their families.”
Pinpointing the prevalence of disability among children in the U.S. is difficult, as conceptual frameworks and definitions of disability vary, the report says. In addition, the evidence base for programs and services aimed at improving outcomes for children with disabilities is limited because of a number of factors, such as limited longitudinal data on health and functioning outcomes, a lack of rigorous evaluation of existing programs and services, and the inability to isolate impacts when children use different programs and services over time as their needs evolve. The committee outlined opportunities to improve the collection and sharing of data and to inform future research efforts on trajectories, outcomes, and interventions, in order to develop innovative and collaborative approaches for promoting healthy growth and development for children with disabilities and supporting their families.
The study was sponsored by the U.S. Social Security Administration. The National Academies of Sciences, Engineering, and Medicine are private, nonprofit institutions that provide independent, objective analysis and advice to the nation to solve complex problems and inform public policy decisions related to science, technology, and medicine. They operate under an 1863 congressional charter to the National Academy of Sciences, signed by President Lincoln. For more information, visit nationalacademies.org.

Thursday, May 10, 2018

Employer Training Bill in California

In The Politics of Autism, I write:
When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. ... People in the disability community refer to this point in life as “the cliff.” Once autistic people go over the cliff, they have a hard time getting services such as job placement, vocational training, and assistive technology. IDEA entitles students to transition planning services during high school, but afterwards, they have to apply as adults and establish eligibility for state and federal help. One study found that 39 percent of young autistic adults received no service at all, and most of the rest got severely limited services.
While the calendar turns to May and away from April’s focus as Autism Awareness Month, awareness must turn to the limited job opportunities that those living with ASD (Autism Spectrum Disorder) face year-round. Ninety percent of individuals with ASD are either unemployed or underemployed. In California, only six out of every 100 young adults with ASD have any form of competitive employment.
Nevertheless, there is encouraging news. Employers are becoming aware of how they can provide support to students with autism. Assembly Bill 2840 seeks to provide funding from the state to support programs that educate employers on hiring students with disabilities.

Last year, my employer, Eskaton, launched a program with several workforce development partners to provide job skill training to young adults living with autism. In addition, this effort provided socialization and mentoring along with uniquely special opportunities to engage with seniors.
...
I am encouraged to see a state proposal making its way through the legislative process, authored by Assemblywoman Blanca Rubio that will help train employers on how best to work with individuals with ASD. This manual for employers is an encouraging step to help individuals living with autism garner and retain long-term employment. The layers of mutually beneficial solutions are compelling and hopeful.
Official summary from the Assembly Appropriations Committee:
This bill creates the Breaking Barriers in Employment for Adults with Autism Pilot Program (Program) in the counties of Sacramento and Los Angeles to increase long-term employment opportunities for young adults with autism. The California Workforce Development Board (CWDB) will administer the three-year Program, which must meet specified goals, including the creation of a manual to train employers in a) building capacity for adults with autism and b) the contents of that manual. The bill states the Program will be funded by a yet-to-happen appropriation by the Legislature.

Wednesday, May 9, 2018

Improving Ava's Law in Georgia

The Politics of Autism includes an extensive discussion of insurance.


From Autism Speaks:
Governor Deal has signed Senate Bill 118, which amends Ava's Law by increasing the limits on the coverage of applied behavior analysis to individuals age twenty and under up to $35,000 per year.

Ava’s Law was originally passed in Georgia in 2015 after almost a decade of advocacy by the autism community. Ava's Law affects private health plans regulated by the State of Georgia and requires screening and diagnosis; speech, occupational and physical therapy; applied behavior analysis up to $30,000 a year for children ages six and under; and psychiatric and psychological care for autism spectrum disorder (ASD).

The law intended to reverse the discrimination that individuals diagnosed with autism experienced when health insurance plans specifically excluded any treatment specific to autism from their coverage. Families in Georgia struggled for years to access basic, evidence-based care, unable to pay out of pocket. Without the appropriate funding stream, the number of providers remained extremely low and long waiting lists developed across the state.

Although it was a huge step in the right direction, the initial passage of Ava’s Law was not without compromise. Although evidence indicates that therapy is effective across the lifespan of individuals with autism, the legislature amended the original bill to cap coverage of behavioral therapy at $30,000 annually and only apply the requirement to children ages six and under.

Advocates were grateful for the progress, but also determined to continue to work towards coverage for individuals with autism of all ages. Another critical step forward occurred in the 2018 legislative session when Senator Renee Unterman introduced Senate Bill 118. The bill simply increased the previous dollar cap on behavioral therapy to $35,000 annually and also increased the age cap on behavioral therapy from six up to the age of twenty.
House Insurance Committee Chairman Richard Smith, a longtime opponent of the bill, became its champion in the 2018 legislative session upon review of claims data reported from Georgia’s own State Employee Health Plan. On May 8, 2018, Governor Deal signed SB 118 which will go into effect on January 1, 2019.

Tuesday, May 8, 2018

Podcast on The Politics of Autism

I did an interview on The Politics of Autism with Dr. Eugenio Duarte:
Autism as a condition has received much focused attention recently, but less attention has been paid to its politics. It is a condition that necessitates significant accommodations and interventions, which can be difficult for people with autism and their loved ones to obtain, depending on the state of autism public policy. Sociologist John J. Pitney argues that political science needs to more rigorously study autism policy and politics, as he outlines in his book The Politics of Autism: Navigating the Contested Spectrum (Rowman & Littlefield, 2015). In our interview, we explore the evolution of our understanding of autism, how public policy impacts the lives of autistic individuals, and suggestions for future research. For anyone with autism or their loves ones, this interview offers suggestions for meeting important needs and hope for a better future.

PODCAST HERE: https://player.fm/series/new-books-in-history-80804/john-j-pitney-the-politics-of-autism-navigating-the-contested-spectrum-rowman-and-littlefield-2015

Monday, May 7, 2018

Enlisting Muslim Help to Fight the Vaccine Myth

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

At The Independent, Andrew Buncombe reports on Minnesota's efforts to improve vaccination rates among the state's Somali population. Measles had erupted after Wakefield convinced Somalis that vaccines cause autism.
“The biggest impact is connecting a condition that is one that challenges any parent who has a child with autism, and connecting that to immunisations, and specifically MMR,” Lynn Bahta, the immunisation clinical consultant with the Minnesota Department of Health (MDOH), told The Independent last summer as it fought to tackle the outbreak.

“Among our Somali American community we have their rates go from 92 per cent, which was higher than non-Somali rates, down to 42 per cent. And that puts them in a very, very vulnerable position.”

To help the state get its message delivered most effectively, officials asked for help from community leaders, in particular imams, who lead prayers at neighbourhood mosques.
Bahta said they told them that the MDOH does not believe that the information being given to them by Wakefield and others was true. She said the community was particularly vulnerable as it already believed there was a higher rate of autism among Somali American boys, something officials in the state say is not supported by data. In the end, more than 30 agreed to help.

“The imams are very concerned about their community and they are very willing to work with us in whatever way they can. They have appreciated the information that we have been able to give them about the outbreak and what they can do as spiritual leaders of the community,” Bahta said.

She said the imams provided officials with direct access to the community. In addition, she said the imams could “bring disease and prevention of disease within the context of their faith. That is something that we don’t have the words for, but they do”.

...
One of the imams who was central to the state’s response to the outbreak was Sharif Abdirahman, the Muslim leader at the Dar al Hijrah mosque in the Cedar-Riverside neighbourhood of Minneapolis. He said he was able to appeal to people using both religion and science. He could also appeal as a parent.

“Islam is a religion of expertise,” he said, sat in the second-floor office of the community centre that also contains a mosque.

“Verses in the Quran say ... if you don’t a know subject ask the advice of people who know the subject very well.”

Sunday, May 6, 2018

TRICARE Coverage Issues

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  As many posts have discussed, the challenges are especially great for military families.

Ariana Cernius has an article at The Journal of Legislation titled “Thou Shalt Not Ration Justice”: The Importance of Autism Insurance Reform for Military Autism Families, and the Economic
and National Security Implications of Improving Access to ABA Therapy Under TRICARE." From the abstract:
The realities of military service—extended family separation, frequent changes of duty stations, and varying access to specialized healthcare—often undermine military autism families’ ability to secure adequate individualized services. These challenges have been compounded by TRICARE’s most recent adjustments in coverage of ABA, which have run counter to trend. In late 2015, TRICARE announced a 15% slash to reimbursement rates for ABA providers, justifying this dramatic change with a statement of the need to bring TRICARE rates, which had previously been higher than Medicaid and commercial rates, in line with other commercial plans. Although the intent behind this rate reduction was to avoid government overpayment, it demonstrated a fundamental misunderstanding about the nature and treatment of autism and the functioning of the health insurance industry, and a lack of recognition of the fact that the commercial insurance, Medicaid, and TRICARE business models are not identical or based solely on revenues. First, simultaneous with its cut to provider reimbursement rates, TRICARE implemented higher credentialing standards for ABA providers, essentially demanding more skilled and educated employees for significantly lower pay. Additionally, because TRICARE does not reimburse providers for certain services that commercial insurance and Medicaid do provide reimbursement for, TRICARE’s move to slash rates was particularly harmful to ABA providers. This combination of policy changes essentially rendered children with autism from military families the least-desirable clients for ABA providers, because the lowered rates and profit margin per autistic child with TRICARE insurance are so significantly below the national average that it is unsustainable for the ABA provider business model to maintain their military autism family clients, and many providers are deterred from taking on new autism families with TRICARE insurance. It is estimated that 23,000 military dependents have a diagnosis of autism, and many stand to join them in the coming years; aside from the harm caused to the children with autism of the families that serve our nation by the increase in hardship in accessing ABA, there are negative implications for broader society as well. Studies show that lack of care and interrupted services have negative impacts to the progress of children with autism, leading to an increase in the economic burden of this population to society due to anticipated higher health costs, and the greater chance that these children with autism will be dependent on society as adults. Furthermore, inadequate or inconsistent access to ABA through TRICARE jeopardizes the health and well-being of military families, which affects national security, given the direct impact family health care plays on military readiness. This article examines the history of TRICARE’s coverage of autism treatment, analyzes the most recent policy missteps, and provides recommendations for policymakers in future efforts to care for and improve the lives of the autism population.

Saturday, May 5, 2018

Oz



The White House announced Friday that President Donald Trump intends to appoint Mehmet Oz, better known as Dr. Oz, to his council on sport, fitness and nutrition.
Oz is well-known as a host of an eponymous television show on health and medical issues and, before that, for appearances on "The Oprah Winfrey Show." But he has become a lightning rod for controversy for featuring what critics say is unscientific advice on his show.
In 2014, a congressional panel questioned Oz over his promotion of weight-loss products on his television show.
"The scientific community is almost monolithic against you in terms of the efficacy of the three products you called 'miracles,'" Sen. Claire McCaskill, a Missouri Democrat, said during the Senate Commerce, Science and Transportation subcommittee hearing.

The following year, a group of doctors criticized him harshly, saying he manifested "an egregious lack of integrity" in his TV and promotional work and called his faculty position at Columbia University unacceptable.
In 2014, Orac (Dr. David Gorski) wrote at Respectful Insolence:
[In] addition to the quackery and weight loss supplements that he promotes regularly on his show, Dr. Oz has started down the path to become antivaccine, if he’s not antivaccine already. Of course, I had seen rumblings of antivaccine proclivities coming from Dr. Oz before. For example, nearly five years ago, he was interviewed by Joy Behar, as noted on the antivaccine crank blog Age of Autism. During that interview, he admitted that his children had not received their flu shots during the H1N1 pandemic and strongly implied that his wife had been responsible, saying, “I`m in a happy marriage and my wife who makes most of the important decisions as most couples have in their lives who absolutely refuses.” Of course, at the time I knew that Oz’s wife is a reiki master and clearly heavily into quackery. Whether it was she who influenced Oz to go as far as he has into the wild world of woo or whether he discovered it himself, I don’t know. What I do know is that anyone who produces a segment like the one he produced on yesterday The Dr. Oz Show is well on his way to being antivaccine. What do I mean?
Take a look at the thimerosal segment on yesterday’s The Dr. Oz Show, and you’ll quickly see what I mean:
The Truth About Thimerosal, Part 1The Truth About Thimerosal, Part 2
Dr. Oz had as guests on his show antivaccine loon Robert F. Kennedy, Jr. and his partner in crime against vaccine science, “functional medicine” expert Dr. Robert Hyman, on his show in a credulous segment about the mercury-containing preservative thimerosal that buys into virtually every trope about mercury in vaccines promulgated by the antivaccine movement. The reason, of course, is because Kennedy and Hyman have a book out. It’s a book entitled Thimerosal: Let the Science Speak: Mercury Toxicity in Vaccines and the Political, Regulatory, and Media Failures That Continue to Threaten Public Health that I’ve discussed before in which, as I put it, Kennedy parties about thimerosal like it’s 1999.