Culture and Inclusion

In The Politics of Autism, I write about special education and inclusion.

Liz Pellicano, Sven Bölte, Aubyn Stahmer have an editorial at Autism titled "The Current Illusion of Educational Inclusion."

[T]hose of us committed to the ideal of inclusion also need to work more generally, across all jurisdictions, to promote cultural change among educators, parents, and peers. All too often at the moment, each of these groups can talk the language of inclusion without adhering to its value. We know that autistic students are more likely to be successfully included if school leadership is supportive (e.g. Horrocks et al., 2008; Praisner, 2003). We know too that the attitude and awareness of peers can be vital in facilitating acceptance (Tonnsen and Hahn, 2015; see also Williams et al., 2017) and that education about autism can improve these attitudes (Carter and Kennedy, 2006). Surveys show, however, that the majority of parents and teachers remain skeptical toward inclusion

Prevalence in Canada

 In The Politics of Autism, I discuss prevalence and the need for comparative analysis.

A March 29 release from the Public Health Agency of Canada:

Autism spectrum disorder (ASD) has a significant and life-long impact on people living with the condition and their families. Families of children with ASD face unique challenges and the Government of Canada is committed to supporting them through investments in research and policy.

Today, the Public Health Agency of Canada, together with the provinces and territories, released the first national ASD prevalence estimates among children aged 5-17 years. The report, Autism Spectrum Disorders Among Children and Youth in Canada 2018: A report of the National Autism Spectrum Disorder Surveillance System, was developed in close cooperation with the provinces, territories and ASD stakeholder groups.

The report estimates that 1 in 66 Canadian children and youth have an ASD diagnosis, which is in line with findings in similar studies conducted in the United States. The data released today establish a baseline that will help researchers determine if ASD prevalence rates change over time. The data will also help inform the development of policies and services to support Canadians with ASD and their families.
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Quick Facts

Key findings of the National Autism Spectrum Disorder Surveillance System Report include:

• Among children and youth aged 5-17 years, 1 in 66 has received an ASD diagnosis.
• Boys have received an ASD diagnosis four times more frequently than girls.
• More than half (56%) of children and youth with ASD were diagnosed by age six, and more than 90% received a diagnosis by age 12.
• Canadian prevalence estimates found in the report are similar to the most recent prevalence estimates from the United States, which have identified that 1 in 68 children have an ASD diagnosis and that boys are 4.5 times more likely to have an ASD diagnosis than girls.

Budget 2018 proposes to fund two new initiatives to support people living with ASD and their families:

• A national resource exchange network to help connect people with ASD and their families to information, resources, employment opportunities, and local programming;
• Funding for community-based projects that will help to reduce stigma and to integrate and strengthen health, social and educational programs.

Associated Links

• Autism Spectrum Disorders Among Children and Youth in Canada 2018: A report of the National Autism Spectrum Disorder Surveillance System
• Infographic: Autism Spectrum Disorder among Children and Youth in Canada 2018

Omnibus Bill Rejects Trump Cuts

In The Politics of Autism, I discuss the issue's role in campaign politics.   In the 2016 campaign, a number of posts discussed Trump's bad record on science and disability issues more generally. 

The Autism Society analyzes the omnibus:

On March 22, the House approved a $1.3 trillion FY18 omnibus spending package by a vote of 256-167. The bill then moved to the Senate where it passed on a vote of 65-32. President Trump signed it on Friday afternoon after briefly threatening to veto the bill which would have led to a government shutdown. The bill includes all 12 annual appropriations bills and will fund federal government programs through the fiscal year ending September 30. See the full text of the spending bill and the Labor-HHS-Ed text that includes most programs impacting people with disabilities.

The Autism Society is pleased to report that the bill provides level-funding or small increases for many of the programs that support people with disabilities. It also rejects many of the cuts proposed in the President’s FY 2018 Budget.

In addition, the bill includes one of the Autism Society’s top legislative goals — Kevin and Avonte’s Law (H.R. 4421/S. 2070). The Autism Society published a statement following the bill’s signing. “We are pleased that the appropriations bill includes the Kevin and Avonte’s Law, a legislative priority for our organization for the last four years, said Scott Badesch, Autism Society President and Chief Executive Officer. “Kevin and Avonte’s Law will infuse necessary funding to states to train first responders and help families supporting people with autism or other disabilities who tend to wander, sometimes resulting in death or injuries.” The Autism Society will be sending thank you letters to the bill’s sponsors and urges its affiliates to do the same.

The Consortium for Citizens with Disabilities (CCD) Fiscal Policy Task Force provided a table with selected line-items showing percentage changes in program funding within the final funding bill. The table shows increases ranging from 1.6% to 40%. About one-third see no increase (which is a cut when factoring in inflation). 

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Segregation and Poverty in Minnesota

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

At the Minneapolis Star-Tribune, Chris Serres reports on Minnesota's Olmstead Plan Quality of Life Baseline Report:

Nineteen years after a landmark U.S. Supreme Court ruling opened the doors to integration, thousands of Minnesotans with disabilities continue to live and work in segregated settings that keep them in poverty and limit their daily autonomy.

These are among the principal findings of the state’s first comprehensive survey examining the quality of life of nearly 50,000 Minnesotans with physical, intellectual and developmental disabilities who spend most of their time in settings such as group homes, nursing facilities and cloistered workplaces known as sheltered workshops.

The survey, released this week, also found wide earnings gaps for Minnesotans with disabilities. People who labor in sheltered workshops and day training programs earned just $3.30 to $3.50 an hour, on average — less than half the earnings of those who worked in more-integrated settings in the community.

People in sheltered workshops were also more isolated socially, mostly limiting their daily interactions to other individuals with disabilities, the survey found.

The findings echo those of a 2015 special report by the Star Tribune, which found that Minnesota is among the most segregated states in the nation for working people with developmental disabilities such as Down syndrome and autism. The series also found that hundreds of people with disabilities are being sent, sometimes against their will, to state-licensed group homes where they live with strangers in settings far from home.

Anthem Settles Suit on Coverage Caps

The Politics of Autism includes an extensive discussion of insurance.

 Carmen Castro-Pagan reports at BNA:

Anthem Insurance Cos. Inc. will pay almost $1.63 million to end claims that it violated federal benefit laws by placing certain caps on the coverage of therapy treatments for children with severe autism disorders.

Anthem also agrees to stop using guidelines that base coverage of applied behavior analysis therapy for autism solely on an individual’s age, according to a motion seeking approval of a class action settlement filed March 23 in the U.S. District Court for the Southern District of Indiana.
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Anthem joins a growing list of companies that have settled claims over coverage of ABA therapy for autism, including United Healthcare Services Inc., T-Mobile USA Inc., and Applied Materials Inc. Similar challenges against Dr Pepper Snapple, Raytheon Co., Banner Health, and Neiman Marcus Group. are pending. Late last year, a federal judge in Washington refused to dismiss similar allegations against the NECA/IBEW Family Medical Care Plan.

The case is W.P. v. Anthem Insurance Companies.

Autism Families Under-Vaccinate

In The Politics of Autism, I discuss the discredited theory that vaccines cause autism. 

A release from Kaiser Permanente:

Children with autism and their younger siblings are significantly less likely to be fully vaccinated than the general population, according to new Kaiser Permanente research published today in JAMA Pediatrics.

"In this large and comprehensive study, we found that after children received an autism diagnosis, the rates of vaccination were significantly lower when compared with children of the same age who did not have an autism diagnosis," said lead author Ousseny Zerbo, PhD, postdoctoral fellow with the Kaiser Permanente Northern California Division of Research.

The retrospective matched cohort study, "Vaccination Patterns in Children After Autism Spectrum Disorder Diagnosis and in Their Younger Siblings," included more than 3,700 children with autism spectrum disorders diagnosed by 5 years of age, and nearly 500,000 children without ASD born between Jan. 1, 1995 and Sept. 30, 2010; and their respective younger siblings, born between Jan. 1, 1997 and Sept. 30, 2014.

The researchers reviewed whether the children received vaccines recommended by the Centers for Disease Control and Prevention's Advisory Committee on Immunization Practices. The data were drawn from six sites participating in the CDC's Vaccine Safety Datalink: Kaiser Permanente locations in California, Colorado, Oregon and Washington, and Marshfield Clinic in Wisconsin.

"There were large disparities in vaccination rates between children with and without autism spectrum disorders, as well as between their siblings, across all age groups and after adjusting for important confounding factors," said senior author Nicola Klein, MD, PhD, director of the Kaiser Permanente Vaccine Study Center.

For example, among children aged 7 years or older, 94 percent of those without an ASD received all vaccines recommended between 4 and 6 years of age, compared with 82 percent of those with an ASD; and for the measles, mumps, rubella (or MMR) vaccine, 96 percent of those without an ASD were vaccinated, compared with 84 percent of those with an ASD.

In addition, the proportion of children who were fully vaccinated with the recommended vaccines was also lower among younger siblings of children with ASD compared with younger siblings of children without ASD. For example, for vaccines recommended between one and 11 months, 73 percent of younger siblings of children with ASD were fully vaccinated compared to 85 percent of younger siblings of children without ASD.

"Numerous scientific studies have reported no association between childhood vaccination and the incidence of autism spectrum disorders," said co-author Frank DeStefano, MD, MPH, Immunization Safety Office, Centers for Disease Control and Prevention. "Nonetheless, this new study suggests that many children with autism and their younger siblings are not being fully vaccinated.

"We need to better understand how to improve vaccination levels in children with autism spectrum disorder and their siblings, so they can be fully protected against vaccine-preventable diseases."

Explore further: Autism risk in younger children increases if they have older sibling with disorder More information: JAMA Pediatrics (2018). jamanetwork.com/journals/jamap … pediatrics.2018.0082

In the Omnibus, Good News for the Disability Community

In The Politics of Autism, I discuss the use of restraint and seclusion.

Christina Samuels at Education Week:

The spending bill signed into law by President Trump, which includes nearly $71 billion for the Department of Education, also includes a directive for a government watchdog agency to study restraint and seclusion in schools.

The language (shown here on page 65 of the bill that passed the U.S. House of Representatives) tells the Government Accountability Office to "conduct a further study" on the restraint and seclusion data that is reported to the U.S. Department of Education's office for civil rights.

"There is concern that seclusion and restraint issues continue to be chronically underreported. In particular, GAO is encouraged to evaluate recommendations for improving data collection at any school, including any special education or alternative school, that serves students, ages 3-21. In fulfilling the requested study, the GAO should also include recommendations, including examples of best practices, of how schools are adopting effective alternatives to these practices and reducing the incidence of seclusion and restraint."

The Politics of Autism also discusses the problem of wandering, which has been the topic of legislation before Congress.

A release from Senator Charles Schumer (D-NY):

Today, U.S. Senate Minority Leader Charles E. Schumer announced that the just unveiled omnibus spending bill includes “Kevin and Avonte’s Law” – a bill that will create and fund a program to provide voluntary tracking devices and expand support services for families who care for someone with autism, dementia, or other special needs, where “bolting,” “elopement,” or “wandering” from parents or caregivers can happen.

Voting Rights

 In The Politics of Autism, I write:  "Support from the general public will be an important political asset for autistic people. Another will be their sheer numbers, since a larger population of identified autistic adults will mean more autistic voters and activists"  But disabled people sometimes face barriers to voting.

 Matt Vasilogambros at Stateline:

 Laws in 39 states and Washington, D.C., allow judges to strip voting rights from people with mental disorders ranging from schizophrenia to Down syndrome who are deemed “incapacitated” or “incompetent.” Some of those states use archaic language like “idiots” or “insane persons” in their statutes.

The states that do not have similar restrictions are Colorado, Idaho, Illinois, Indiana, Kansas, Maine, Michigan, New Hampshire, North Carolina, Pennsylvania and Vermont.

Not only is there no agreement among legal and psychological experts over whether certain people with disabilities should be disenfranchised, but there is also no set standard for measuring the mental capacity needed to vote. There is a tension between protecting the integrity of the electoral process and the civil rights of a person under guardianship, said Dan Marson, a professor emeritus at the University of Alabama at Birmingham’s department of neurology.

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Without a standard for measuring capacity, people with mental disabilities need to be properly represented in court, said Tom Coleman, the legal director of the Spectrum Institute. Coleman analyzed six months of court records and found that 90 percent of people with developmental disabilities placed under conservatorship in Los Angeles County were losing their right to vote. Statewide, 32,000 Californians have lost their right to vote in the past decade, he said.

“They were being pushed through the system as a matter of routine.”

Coleman lobbied for the California law, which took effect in 2016 and says the right to vote can be taken away only if a court finds “clear and convincing evidence” the person can’t express a desire to vote.

California, in its new law, joined Maryland, Nevada and New Mexico in adopting a standard promoted by the Bazelon Center and the American Bar Association. The standard is simple, Mathis said: Can a person communicate, with or without accommodations, a desire to vote?

“Can you make a choice?” she said. “It’s self-selecting. If someone with dementia can’t make a choice, yeah, that person doesn’t have the capacity to vote.”

However, a 2001 decision from the U.S. District Court for the District of Maine offered a stricter standard: Does a person understand the “nature and effect” of voting? Washington state uses that language in its statutes.

Appelbaum from Columbia University helped create that standard. He argued that people should know what they’re doing when they’re voting — both the process of casting a ballot and the consequence of that vote. If people don’t understand, it could “cast a shadow on the legitimacy of the process.”

Autism Society Disagrees with Education Department on Racial Disaparities

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

From the Autism Society:

On February 27, the U.S. Department of Education published a notice of proposed rulemaking (NPRM) to postpone the compliance date of the “Equity in IDEA” or “significant disproportionality” Rule by two years until July 1, 2020. For children three through five, the Rule would be postponed for four years until 2022. When Congress last reauthorized the IDEA in 2004, it sought to correct disparate treatment of students of color with disabilities by requiring states, for the first time, to identify school districts with, and direct federal resources to address, gross inequities. The Autism Society opposes this action that delays important resources going to states and schools to correct these inequities. The GAO found that in 2010, states required only two percent of all districts to use IDEA funds for early intervening services to address the overrepresentation problem. The CCD Education Task Force immediately responded to the NPRM, saying “We have long been aware and research shows that students of color and other minorities are disproportionately referred to special education and subject to unfair discipline practices. There is no good reason for this delay.” Senator Patty Murray (WA) and Rep. Bobby Scott (VA), ranking members of the Senate and House Education Committees, also issued a strong statement opposed to the action. The deadline to provide comments is May 13, 2018. The Autism Society will provide comments and will be encouraging affiliates to respond.

Kevin and Avonte's Law in the Omnibus?

The Politics of Autism discusses the problem of wandering, which has been the topic of legislation before Congress.

From the Autism Society:

Congress is set to unveil a funding plan for FY 2018, and we hear that inclusion of Kevin and Avonte’s Law in the final appropriations bill is on the table. We need your help to garner support for this option to protect families.

First introduced in 2016, and again late last year, Kevin and Avonte’s Law would provide U.S. Department of Justice grants to law enforcement, nonprofits, and other community organizations to facilitate the development of training resources to better respond to wandering incidents. The bill reauthorizes the expired Missing Alzheimer’s Disease Patient Alert Program, and broadens it to support to people with autism and other developmental disabilities. With 42 percent of wandering cases involving children nine years or younger resulting in fatal outcomes, it is critical Kevin and Avonte’s Law gets the attention it deserves as soon as possible.

Please call (202) 224-3121 TODAY and urge your Senators and Representatives to support the inclusion of Kevin and Avonte’s Law in the omnibus package. Now is the time for everyone to encourage Congress to take this necessary step in order to prevent more tragedies and to keep families safe.

The EMPOWER Act and Money Follows the Person

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

A 3/15 release from Rep. Brett Guthrie:

Congressman Brett Guthrie (R-KY) and Congresswoman Debbie Dingell (D-MI) today introduced the Ensuring Medicaid Provides Opportunities for Widespread Equity, Resources (EMPOWER) and Care Act (H.R. 5306) to ensure that Medicaid beneficiaries can receive the best long-term care possible in their communities or in their own homes.

The federal Money Follows the Person Demonstration Program was first authorized in 2005 and allows certain Medicaid beneficiaries, mainly those with disabilities, to receive long-term care services in their own homes. The program provides a way for elderly and disabled patients to move from institutional care to home or community-based services. The Kentucky Transitions program has been able to help hundreds of Kentuckians make this transition. 

From Rep. Dingell:

At the end of 2015, 43 states and the District of Columbia were participating in the MFP demonstration. As part of an evaluation provided to Congress in a 2017 report, the U.S. Department of Health and Human Services concluded there is strong evidence beneficiaries’ quality of life improves when they transition from institutional to community-based long-term care system. The report also found that on average, monthly expenditures for beneficiaries participating in the demonstration program declined by 23 percent during the first year, saving Medicare and Medicaid $978 million.

Dingell and Guthrie’s legislation to continue and improve the program is supported by a large coalition of aging and disability organizations.
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“Autism Speaks recognizes the critical importance of Medicaid-funded Home and Community Based Services (HCBS) to individuals with autism and their families,” said Angela Geiger, President and CEO Autism Speaks. “Reauthorizing the Money Follows the Person (MFP) program would benefit individuals across the country who are waiting for HCBS. We strongly support the EMPOWER Care Act and urge Congress to pass this important piece of legislation.”

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For more information on the EMPOWER Care Act, please click here.

Banning Aversives

In The Politics of Autism, I write:

For those who remain at larger residential institutions, the horrors of yesteryear have generally ended. In 2012, however, a ten-year-old video surfaced, showing disturbing image of an electric shock device at the Judge Rotenberg Center in Canton Massachusetts. Staffers tied one student to a restraint board and shocked him 31 times over seven hours, ignoring his screamed pleas to stop. The Rotenberg Center is the only one in the nation that admits to using electric shocks on people with developmental disabilities, including autism. Center officials said that they had stopped using restraint boards but insisted that shocks were necessary in extreme cases to prevent officials insist the shock program is a last resort that prevents people with severe disorders from hurting themselves or others. Though a majority of the FDA’s Neurological Devices Panel said that such devises pose “an unreasonable and substantial risk of illness or injury,” the agency had not banned them as of 2014.

A Friday release from ADAPT:

ADAPT praises Congressman Chris Smith (R-NJ), a long-time champion on autistic community issues, who is showing leadership yet again by committing to the introduction of a legislation that would ban the use of electric shock devices that are used as a form of “therapy” for disabled people, like the devices used by the Judge Rotenberg Center (JRC). ADAPT and other disability-led organizations have long fought to end the use of these electric shock devices on disabled people, which are made to be stronger than a police taser and have been used to shock disabled people for minor infractions, such as not taking off a coat in a timely manner.

In announcing Congressman Chris Smith determination to put an end to these horrific devices, Congressman Smith said “The use of electrical stimulation devices to “treat” individuals with disabilities as “aversion therapy” is torture-plain and simple. This practice is absurd and degrading, with the UN Special Rapporteur on Torture specifically singling out this practice as a human rights violation. The abuses at the Rotenberg Center need to end, and the FDA-which has for two years both under Presidents Obama and Trump failed to finalize regulations to ban these electric shock devices for aversive therapy-must protect the rights of the vulnerable and ban these devices immediately.”

“Congressman Smith has come through once again for the Disability Community” said ADAPT member Cal Montgomery of Illinois. “We have been fighting for years to end the torture of disabled people who have been subjected to electric shocks. Thanks to Representative Chris Smith we are much closer to ending the use of graduated electronic decelerators to punish disabled children and adults.”

ADAPT members from across the nation have been camped out for eight days outside FDA Commissioner Scott Gottlieb’s home in Washington, D.C. demanding that he release regulations that would do exactly what Congressman Smith is planning to do legislatively – to put an end to this violent treatment by banning these electric shock devices. “I am so glad that this legislation was taken up by a member of Congress who not only introduces legislation but has a track record of getting bills passed,” said Anita Cameron, an organizer with ADAPT. “It is shameful that the FDA wouldn’t release regulations banning these devices. Torturing disabled people is obviously wrong and our country needs to do better. We are thankful to Congressman Smith for leading the way when the FDA would not.”

“We will not rest until this legislation has passed and disabled people are safe from these kinds of abuse” said ADAPT organizer Mike Oxford. “We have worked long and hard for this and we are grateful to Congressman Chris Smith for working with us to make it a reality.”

For decades ADAPT has worked to secure for disabled Americans the same rights and liberties enjoyed by all other Americans. Learn more about ADAPT’s history and activities at www.adapt.org, on social media with the NationalADAPT Facebook page and on the @NationalADAPT Twitter, and under the hashtag #ADAPTandRESIST. You can also follow the fight against the JRC shock device at www.adapt.org/jrc and #StopTheShock.

Autism Society Opposes Bill to Weaken ADA

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

From the Autism Society:

Last month, the House of Representatives passed the ADA Education and Reform Act (H.R. 620) to the dismay of many in the disability community. The bill creates a system whereby individuals whose rights are violated under the Americans with Disabilities Act (ADA) must undergo additional and burdensome hurdles to enforce their civil rights. For nearly 28 years, the ADA has provided pathways for people with disabilities to engage and interact with society. H.R. 620 unravels decades of progress, making it harder for people with disabilities to actively participate in their communities. The Autism Society continues to work with national disability organizations to ensure the Senate fails to pass H.R. 620 or similar legislation. State and local affiliates are encouraged to sign on to a CCD letter urging the Senate not to introduce ADA notification legislation.

Senator Tammy Duckworth (D-IL) is preparing a letter to Senators McConnell (R-KY) and Schumer (D-NY) telling them they should not bring forward H.R.620 or any similar bill to the Senate floor. We need help getting additional Senators to sign a letter opposing H.R. 620 or similar measure in the Senate. Please take a minute to call your Senators and ask them to sign-on to the "Duckworth ADA letter protecting the rights of people with disabilities.”

Co-Occurring Conditions

In The Politics of Autism, I write:

Autism often involves a range of other co-occurring conditions: intellectual disabilities (e.g., low IQ); delays in gross motor skills (e.g., walking, throwing) and fine motor skills (e.g., writing); attention problems and hyperactivity; anxiety; self-injurious behavior; unusual sensitivity to certain sounds, smells, or feelings; extreme food selectivity; and sleep disorders. For autistic people and their families, the co-occurring conditions may cause as much anguish as the autism itself.

G.N. Soke and colleagues have an article at The Journal of Autism and Developmental Disorders titled "Prevalence of Co-occurring Medical and Behavioral Conditions/Symptoms Among 4- and 8-Year-Old Children with Autism Spectrum Disorder in Selected Areas of the United States in 2010."

The abstract:

We compared the prevalence of various medical and behavioral co-occurring conditions/symptoms between 4- and 8-year-olds with autism spectrum disorder (ASD) from five sites in the Autism and Developmental Disabilities Monitoring Network during the 2010 survey year, accounting for sociodemographic differences. Over 95% of children had at least one co-occurring condition/symptom. Overall, the prevalence was higher in 8- than 4-year-olds for 67% of co-occurring conditions/symptoms examined. Further, our data suggested that co-occurring conditions/symptoms increased or decreased the age at which children were first evaluated for ASD. Similarly, among the 8-year-olds, the prevalence of most co-occurring conditions/symptoms was higher in children with a previous ASD diagnosis documented in their records. These findings are informative for understanding and screening co-occurring conditions/symptoms in ASD.

From the article:

[F]indings from this study are informative and useful to policymakers, clinicians, and earlyintervention specialists. These data may inform policymakers on the type of screening programs that may provide the best opportunity to capture most co-occurring conditions/symptoms during routine evaluations of children with ASD. Since co-occurring conditions can be found even at a young age, clinicians may use these data to support screening for co-occurring conditions/symptoms and provide specific interventions. As reported by others, the high prevalence and the diversity of co-occurring conditions/symptoms in ASD suggest the need for a comprehensive system of care for these children. Assessment of co-occurring conditions/symptoms at an early age may provide opportunity for early identification of children with ASD, since these conditions/symptoms increase the likelihood to be in contact with different health care providers.

Trump Fails to Convene Disability Committees

In The Politics of Autism, I discuss the issue's role in campaign politics.   In the 2016 campaign, a number of posts discussed Trump's bad record on science and disability issues more generally. 

Michelle R. Davis at Disability Scoop:

Lawmakers are urging the Trump administration to convene multiple committees tasked with advising the federal government on disability issues that appear to have been put on hiatus.

The three panels — The President’s Committee for People with Intellectual Disabilities; The National Institute on Disability, Independent Living and Rehabilitation Research Advisory Committee; and the Interagency Committee on Disability Research — typically meet quarterly or several times a year, but have been less active as of late, according to six Democratic senators.

In a letter sent this month to Lance Robertson who heads the U.S. Department of Health and Human Services’ Administration for Community Living, the senators expressed concern that the panels “were largely ignored in 2017” leading to less input from people with disabilities and other advocates on federal policy.

“The administration’s failure to convene these committees and councils is a clear stifling of the disability community’s voice and representation in government,” said Sen. Bob Casey, D-Pa., the ranking member of the U.S. Senate Special Committee on Aging and a lead signatory of the letter. “It’s insulting for the administration to make important decisions about key programs without input from the disability community.”

The title of one of Trump's ghostwritten books suggests his attitudes toward disability:

 

Autism Legislation in Georgia: Score One for Evidence

The Politics of Autism includes an extensive discussion of insurance.

As Martha Derthick and Paul J. Quirk argued years ago in The Politics of Deregulation, strong evidence and arguments can actually change lawmaker's minds.

In Atlanta, Doug Richards reports at WXIA-TV:

The battle to expand insurance coverage for children with autism has been years in the making at Georgia's Capitol. It won a key victory three years ago – and another in Monday House insurance committee meeting – where chairman Rep. Richard Smith (R-Columbus) has spent years blocking autism legislation.

Smith had worried that adding mandated autism coverage would increase insurance costs. But Smith says he’s studied it further – and is now a believer in the autism bill. Currently, Georgia law requires some insurers to cover autism costs through age 6. This year’s Senate bill expanded it to age 12. Smith expanded it again to age 20.

Smith said his research showed that expanding coverage would cost policyholders less than 50 cents per month. "Fifty cents isn’t going to break anybody," Smith told 11Alive News after the vote.

"Today was a miraculous day," said Judith Ursitti of Autism Speaks, who added Chairman Smith’s conversion was quite unexpected.

NY Post Calls on Maloney to Apologize for Past Antivax Stand

In The Politics of Autism, I discuss the discredited theory that vaccines cause autism. 

That theory has taken some hits lately.

An editorial in The New York Post:

Rep. Carolyn Maloney has finally seen the light about vaccines — sort of.

The Upper East Side/Queens congresswoman for years bought into the myth that vaccines can cause autism.

So it’s good that a Maloney spokesman on Sunday announced that she’s dropped the lunacy: 

“Congresswoman Maloney believes in the efficacy and safety of vaccines. She was at the forefront of efforts to protect funding for vaccines in the Affordable Care Act.”

Yet even after passage of the ACA, she compared — in congressional testimony — those who reject the supposed autism-vaccine link to those Big Tobacco apologists who denied that smoking causes cancer.

To be fair, that was partly because she has a heart, citing “verbal evidence coming from parents where they break down, [and say], ‘I had a normal child, I gave him a vaccination, and then they came down with autism.’ ”

But playing to that sentiment has led all too many parents to skip immunizations for their children — putting them and other kids at risk.

This, when medical experts long ago utterly debunked the connection: The Lancet, the journal that published the original study “proving” a vaccination-autism link, retracted it as utterly flawed back in 2010.

It’s a small win for science that Maloney’s admitting the truth. It’ll be a bigger one if she (and others who did the same) apologizes for promoting a deadly myth.

Antivax House Member Apparently Jumps Ship

 In The Politics of Autism, I discuss the discredited theory that vaccines cause autism. 

At The New York Post, Carl Campanile reports that an antivax House member has apparently jumped ship.

A veteran congresswoman on Sunday backed away from her years of championing a discredited movement that claims vaccines cause autism.

A campaign spokesman for Rep. Carolyn Maloney [D-NY] said the congresswoman now “does not believe there is a link between vaccinations and autism.”

“Congresswoman Maloney believes in the efficacy and safety of vaccines. She was at the forefront of efforts to protect funding for vaccines in the Affordable Care Act,” the rep said.

But for years, Maloney beat the drum for authorities to the study for any links between vaccines and autism — even saying the denials of a connection reminded her of people who dismissed tobacco smoking as a cause of cancer.

Too Many Autistic People Die Young

In The Politics of Autism, I write:

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

David Mandell writes at Autism:

People with autism think about killing themselves and die from suicide at a horrifying rate. Small studies find that 20%–40% of adults with autism have considered killing themselves (Hedley et al., 2017) and 15% report making at least one attempt (Balfe and Tantam, 2010). A large Swedish cohort study found that adults with autism are nine times more likely to die from suicide than other adults (Hirvikoski et al., 2016). Studies of children with autism find that 11% have suicidal ideation and 4%–7% have made suicide attempts (Mayes et al., 2013), and the risk of making a suicide attempt is six times that of other children (Moses, 2017).
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As we think about the urgent task of reducing premature mortality in people with autism, it is worth revisiting some passages from the Autistica report that deserve as much public attention as those describing suicide risk. The risk of early mortality from all causes among people with autism is nearly twice that of the general population. Those with autism and no accompanying learning disability die an average of 16 years earlier. Those with autism and intellectual or learning disabilities die an average of 30 years earlier (Hirvikoski et al., 2016). The study by Hirvikoski and colleagues represents the largest and most careful study of mortality and autism to date. They found that 12% of deaths were due to suicide; 22% were due to diseases of the circulatory system, which include heart disease and stroke; and 12% were due to neoplasms, which include cancers. Diseases of the nervous system, which include epilepsy, accounted for 9% of deaths. These numbers vary greatly between individuals with and without intellectual disability. Suicides accounted for 14% of deaths in autistic adults without intellectual disability and 4% of deaths in those with intellectual disability. Death from nervous system diseases accounted for 4% of deaths in those without and 19% of those with intellectual disability.
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By no means am I suggesting that we divert attention or resources from determining the best ways to reduce suicide risk in people with autism, but we must not lose sight of our primary goal, which should be to reduce all premature mortality and increase quality of life among people with autism. It would be a great service if future studies of mortality in autism provided attributable fractions, with the goal of directing public health efforts. Studies to date suggest that there is no single cause or even small set of causes that accounts for all the excess mortality in autism. Until we know exactly where to direct our efforts, improving primary and preventive care for people with autism (Nicolaidis and Raymaker, 2013), and addressing the healthcare needs that are common to all adults but exacerbated in adults with autism, may result in better outcomes than specialty programs that address one risk factor at a time.

Special Ed Reform in CA: Unanticipated Consequences

 In The Politics of Autism, I write about IEPs and FAPE.  Some of the analysis involves California.

At EdSource, John Fensterwald offers a very clear example of how reforms create unanticipated consequences.

Students with disabilities are served by 133 regional agencies that administer special education services for member school districts. These agencies, known as Special Education Local Plan Agencies, or SELPAs, serve either multiple districts or a single large district.

Overall enrollment is declining in about half of the state’s school districts — but not special education enrollment, which results in many SELPAs receiving less state revenue for more students.

San Bernardino City Unified, which is large enough to have its own SELPA, illustrates the challenge. Jayne Christakos, chief business officer for the district, told legislators that at the same time that district enrollment dropped by 398 students, leading to a loss of $4 million in general funding and $210,000 in special education funding, the number of students identified with disabilities increased by 189 students. Many of those are autistic, requiring more money than the state provides.

The current system, adopted in 1998, switched to funding based on total enrollment to discourage districts that were suspected of over-identifying special education students and placing them in separate classes with more seriously disabled students — to get bigger reimbursements. The new process, which is funding based on enrollment, not specific disabilities, did simplify the process but no longer corresponds to need.