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Friday, September 22, 2017

DeVos Is Not Supporting Full Funding of IDEA

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

Christina Samuels at Education Week excerpts an interview with DeVos:
Would you push for full funding of IDEA? That's 40 percent of the excess cost of educating a child with disabilities.
I think it's a fair question to ask Congress about what the funding levels should be. Right now it's about 15 to 18 percent. And yet, the regulations continue to sort of get piled on here and there. They just continue to sort of make it more and more cumbersome and more and more burdensome for states and for local districts. There has to be, I think, a regular review of that and look at the balance of that, and see what's really right. But most of all what's really right for the students we're trying to serve and for the families and what kind of empowerment do they have in that decision-making.
So you want might want to call for slimming down regulation, but also upping the funding for IDEA. Do I have that about right?
I'm not advocating one way or another right now. I'm just saying it's clear that Congress has not funded it at the level they committed to when the law was passed. And I think that is something that should be reviewed on a regular basis.

Thursday, September 21, 2017

Shortened School Hours


At The Oregonian, Samantha Swindler writes that Oregon schools have shortened hours for many kids with autism and other disabilities.
Joel Greenberg, attorney with the advocacy group Disability Right Oregon, estimated at least 15 percent of the calls he deals with are about students placed on reduced school hours.
"It often happens that a district will tell a parent, 'His behavior is really aggressive right now, let's reduce his school day for a short time, and then gradually return him to a full day,'" Greenberg said. "We'll then often find that that short time got longer and longer, at times up to two years."
The state doesn't track how frequently this happens, but over a four-month period last year, 68 families called an Oregon disability help hotline because of a child's shortened day due to behavior.
Of those callers, 27 percent had a child age 7 or younger.

"What's the prognosis for a child who needs a lot of support and probably more education and he's getting 1-2 hours (in class) a day at age 6?" Greenberg asked.
....
Senate Bill 263, signed into law this summer, specifies that a district cannot place a student on an abbreviated day without a parent's consent. Districts must consider at least one option that includes supports to allow the student to attend a full school day.

Wednesday, September 20, 2017

More Groups Agains Graham-Cassidy

In The Politics of Autism, I discuss Medicaid services for people with intellectual and developmental disabilities, as well as other government programs at the federal and state levels.

From Autism Speaks:
Please contact your US Senator TODAY and ask them to VOTE NO on any proposal to reduce Medicaid funding for people with autism. Medicaid is the single most important insurer for people with autism and pays for the majority of all long-term care adults with autism receive. Proposed changes in the Graham-Cassidy-Johnson proposal would result in less Medicaid funds for states and would negatively impact people with autism and their families. Please take action today!

The American Psychiatric Association (APA) today voiced its strong opposition to the Graham-Cassidy bill under consideration in the U.S. Senate.

“This legislation, the latest attempt to repeal the Affordable Care Act, will lead to millions of Americans losing their health care coverage,” said APA CEO and Medical Director Saul Levin, M.D., M.P.A. “We are particularly concerned that this bill would make drastic cuts to the Medicaid program and rollback expansion, which has allowed 1.3 million Americans with serious mental illness and 2.8 million Americans with substance use disorders to gain coverage for the first time. This bill harms our must vulnerable patients.

"The APA is ready to work with members of both parties to craft a bipartisan solution that stabilizes the health insurance market and ensures Americans have access to quality, affordable health care.”

Against Graham-Cassidy

In The Politics of Autism, I discuss Medicaid services for people with intellectual and developmental disabilities, as well as other government programs at the federal and state levels.

From The Arc:
“While this piece of legislation has a new title and makes new promises, it is more of the same threats to Medicaid and those who rely on it for a life in the community. The Graham-Cassidy-Heller-Johnson proposal cuts and caps the Medicaid program. The loss of federal funding is a serious threat to people with disabilities and their families who rely on Medicaid for community based supports.
“Many of the provisions in this legislation are the same or worse than what we encountered earlier this year, which shows that the architects of this bill are still ignoring the pleas of their constituents with disabilities. The talking points sugar coat it, but the reality is simple – under this proposal less money would be available despite the fact the needs of people who rely on Medicaid have not decreased. The Arc remains staunchly opposed to legislation that includes per capita caps or block granting of Medicaid. We need Members of Congress to find a solution that actually takes into consideration the needs of people with intellectual and developmental disabilities,” said Peter Berns, CEO of the The Arc.

Tuesday, September 19, 2017

Ill-Trained Cop Screws Up Encounter with Innocent Autistic Kid

In The Politics of Autism, I discuss interactions between police and autistic people.   Police officers need training to respond appropriately.  When they do not, things get out of hand.

Alexis Egeland reports at The Arizona Republic:
Police body-camera footage shows a Buckeye police officer detaining a 14-year-old boy with autism after he became suspicious of the boy, who was practicing one of his calming techniques at the time.
The Buckeye Police Department has said they think the officer reacted to a reasonable suspicion, but the family's attorney says there is insufficient training for officers to deal with people on the autism spectrum, something the boy's family would like addressed.
The footage, which the family attorney posted on YouTube on Sunday, shows an officer exiting his vehicle to approach the boy near Verrado Town Square and ask him what he's doing. The boy says he's "stimming" and holds up a piece of string.

Autism Society v. Graham-Cassidy

In The Politics of Autism, I discuss Medicaid services for people with intellectual and developmental disabilities, as well as other government programs at the federal and state levels.

From the Autism Society:
Last week, Senators Bill Cassidy and Lindsey Graham unveiled the latest plan to repeal the Affordable Care Act, and decimate the Medicaid program. Similar to previous plans, the Cassidy-Graham proposal is another heartless attempt to strip away a critical lifeline from the nation’s most vulnerable communities. Although the official Congressional Budget Office (CBO) score is forthcoming, we know the Cassidy-Graham plan proposes the same damaging cuts and caps to Medicaid as its two unsuccessful predecessors, the American Health Care Act (AHCA) and Better Care Reconciliation Act (BCRA).
The Cassidy-Graham plan puts per capita caps on Medicaid, leading to devastating cuts in funding, penalizes states that have invested in their Medicaid systems, and phases out the Medicaid expansion and marketplace subsidies. The bill also includes block grants which will sunset after 2026, leaving uncertainty as to how funding gaps will be addressed down the line. A few senators have come out against the proposal, but we need to take action TODAY to ensure the Cassidy Graham plan fails to make it to the floor for a vote.
Contact your senators (202-224-3121) today and urge them to oppose the Cassidy-Graham plan or any other bill that cuts, caps or block grants Medicaid. We demonstrated the power of our collective voices with previous attempts to gut Medicaid, and together we can ensure the Cassidy-Graham proposal meets a similar fate.

Monday, September 18, 2017

Not Much Federal Money for Transition Research

The Department of Health and Human Services (HHS) has issued its Report to Congress on Young Adults and Transitioning Youth with Autism Spectrum Disorder.
According to IACC’s analysis of the ASD research portfolio (including both federal and private funders), funding allocated to projects on lifespan issues, including the transition to adulthood, represented the smallest segment of ASD research funding. In 2015, projects on lifespan issues received 2 percent ($6.1 million) of overall combined federal and private ASD funding, similar to the investments made in previous years; this percentage does not change when including only federal sources.  When considering only the topic of transition, the proportion is less than 2 percent of total funding. In terms of number of projects rather than percentage of funding, lifespan issues again were 2 percent of the entire ASD research portfolio, with 34 projects across both federal and private sources; of these, 21 were devoted to transition issues.
As can be seen in Table 2, programs currently supporting research related specifically to the transition to adulthood among youth and young adults with ASD were found in only four agencies: NIH, HRSA, ED, and DOD. In 2013-2016, only 18 federally-funded research projects focused on transitioning youth and young adults with ASD were newly awarded across these four agencies; seven of these were in response to NIH’s Services Research for Autism Spectrum Disorder across the Lifespan (ServASD) Initiative, and four were in response to autism-specific research programs within HRSA. Across all federal agencies surveyed, only six investigator-initiated research projects focusing on transitioning youth and young adults with ASD were funded through broadly targeted programs: four projects through investigator-initiated extramural research programs in NIMH and NICHD, one study in response to ED’s (NCSER) cross-disability call for research on transition, and one investigator-initiated research project funded through DOD.

Sunday, September 17, 2017

Special Education Teacher Shortage in Oklahoma


Public schools in 48 states and the District of Columbia report teacher shortages in math for the 2017-18 school year, according to the US Department of Education. Forty-six states report shortages in special education, 43 in science and 41 in foreign languages.
Jennifer Palmer reports at Oklahoma Watch:
Oklahoma schools started the school year with more than 500 teaching vacancies, but special education is the most difficult to fill, according to a recent survey of 300 districts by the Oklahoma State School Boards Association. Some districts report special education teacher vacancies year after year.
The shortage of special education teachers is a nationwide problem. It is likely compounded in Oklahoma by the state’s comparatively low teacher salaries, although state law requires that special education teachers receive a salary of 5 percent more than general education teachers. Forty-six states, including Oklahoma, reported shortages in special education for the 2017-2018 school year; math and science are also hard-to-staff areas.
...
High turnover is driving the special-education teacher shortage. Special education teachers tend to leave the classroom at higher rates than general education teachers, and they burn out quicker, research has shown. Coupled with the normal teaching demands is a grueling amount of paperwork and meetings required by federal law.
But the shortage is a pipeline issue, too. Federal data show students graduating with teaching credentials in areas like early childhood and elementary education far outnumber those credentialed to teach students with disabilities. The University of Oklahoma, for instance, graduated six special education teachers in 2015-2016, compared to 69 in elementary education. Keeping those graduates in Oklahoma is an even bigger issue: More than half of OU’s spring teaching graduates accepted jobs out of state this year.

Saturday, September 16, 2017

Yet Another Run at ACA

In The Politics of Autism, I discuss Medicaid services for people with intellectual and developmental disabilities, as well as other government programs at the federal and state levels.

From ASAN:

The Senate is at it again, trying to rush through disastrous legislation to take our health care away. The Graham-Cassidy bill introduced this week will have the same devastating effects as the repeal bills we’ve been beating back all year. It will slash Medicaid funding, leave millions without health insurance, and allow insurance companies to deny you coverage if you have a disability.
Graphic from FamiliesUSA showing that the Graham-Cassidy bill and the previous repeal bills have the following things in common: eliminates coverage for millions, makes massive cuts to Medicaid, eliminates the ACA's guarantee of financial help for lower- and middle-income families, guts protections for people with pre-existing conditions, pushes health care costs onto states
We stopped them from taking away our health care before, and we can stop them now. You know the drill: call both of your Senators, then email them. You can find phone numbers for your Senators’ offices at contactingcongress.org, and use Access Living’s email tool to send them emails.
CBPP offers details on one effect of the bill:
Cap and cut federal Medicaid per-beneficiary funding for tens of millions of seniors, people with disabilities, and families with children starting in 2020. Instead of the existing federal-state financial partnership, under which the federal government pays a fixed percentage of a state’s Medicaid costs, Cassidy-Graham would cap federal Medicaid funding at a set amount per beneficiary, irrespective of states’ actual costs. The cap would grow more slowly each year than the projected growth in state per-beneficiary costs. Prior CBO estimates suggest that Cassidy-Graham would thus cut the rest of Medicaid (outside the expansion) by $175 billion between 2020 and 2026, with the cuts reaching $39 billion (8 percent) by 2026, relative to current law.

Friday, September 15, 2017

A Plea Against a Bill That Would Weaken ADA

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

From The Congressional Record, September 14, 2017:
Mr. LANGEVIN. Mr. Speaker, today, I rise to express my strong opposition to H.R. 620, the ADA Education and Reform Act, which recently passed out of the Judiciary Committee.

For 27 years, the Americans with Disabilities Act has made a difference in millions of lives, including my own, by prohibiting discrimination on the basis of a disability and requiring accessibility  in places of public accommodation.
Mr. Speaker, H.R. 620 decimates the underlying intent of the ADA by allowing entities to wait before addressing barriers to access. It would roll back years of progress, and it sends a message to the disability community that we are not worthy of being included like everyone else. I urge my colleagues to consider the true implications of this policy.
Mr. Speaker, I was injured in 1980, a full 10 years before the ADA was enacted. I remember what our country was like before the ADA. I do not wish to go back. Instead of weakening our civil rights, let us work together to protect them.

Thursday, September 14, 2017

Housing Dilemmas

The Politics of Autism explains that autism services can be complicated, creating difficulties for autistic people and their families.  

At Autism, David S. Mandell has an article titled: "A House is not a Home: The Great Residential Divide in Autism Care."
In the United States, a debate about how and where to house adults with autism is dividing autism advocates. New rulings from the Center for Medicaid Services, which oversees the public health care insurance program for people living in poverty or with disabilities, has thrown this debate into sharp relief. The revised rules require that long-term care facilities paid through Medicaid waivers—a common financing mechanism to support adults with disabilities—house no more than four people, be dispersed in communities, and offer significant freedom of access to their residents (https://www.regulations.gov/document?D=CMS-2008-0035-0058). Many autism advocates have hailed this ruling as a civil rights victory in the service of inclusion and community participation. An equally vocal group is very concerned that this funding arrangement will make it difficult for more severely impaired adults who need round-the-clock care to find adequate housing.
...
Clearly, we need more research on the effects of different housing arrangements on outcomes for adults with autism. Residential care is the single largest cost over the lifetime of individuals with autism (Buescher et al., 2014); decisions about this type of care may have the most profound effect on their well-being and happiness. Right now, our decision-making regarding which types of placements to pay for and prioritize is based on values rather than data. And, the dichotomy between community placements and more segregated settings may not be the most useful dimension to value or to measure. Perhaps, we should instead consider two other factors: have we maximized happiness, health, safety, and community engagement for that individual (Orsmond et al., 2013)? And, returning to one of the original reasons for deinstitutionalization, have we maximized the observability of care, so that we can be confident of its quality?
I am not naïve to the challenges implied by these two metrics. Measures of happiness and life satisfaction, especially for those adults with whom we have difficulty communicating, are very poor (Shattuck and Roux, 2013). Community engagement is a fuzzy construct. Does a heavily supervised visit to the mall with little interaction with others count as engagement? Should we instead identify social capital as a more meaningful construct (Mithen et al., 2015)? What systems, regardless of where housing is located, should be used to monitor quality of care?
Debating and conducting research on the relative merits of different residential settings is important, but not a substitute for focusing on what care is delivered and what opportunities are available in these settings. Incentivizing community-based housing will make care more consistent with many of our societal values and will combat our society’s dangerous tendency to move toward more restrictive settings when they are available, even when it is not in the best interest of the individual. It will not, however, address more fundamental concerns about community participation and observability of care and has the potential to leave more severely impaired individuals behind.

Wednesday, September 13, 2017

A Bill to Weaken the ADA

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

Last week, the House Judiciary Committee approved H.R. 620, the ADA Education and Reform Act of 2017,

From ACLU:
H.R. 620 would completely change the way in which a business is required to comply with the ADA. Instead of requiring that a business comply proactively, the bill would place the burden on the individual who is being denied access. This bill proposes that after an individual with a disability is denied access she must first notify the business owner, with exacting specificity, that her civil rights were violated, and then wait for six months to see if the business will make “substantial progress” toward access, before going to a court to order compliance.
Business owners can spend years out of compliance and face no penalty even after they receive notice, so long as the owners claim “substantial progress.” By allowing a business an endless amount of time to become compliant with the ADA’s reasonable requirements, H.R. 620 removes any incentive for a business to proactively ensure that people with disabilities have access. Instead, the bill encourages businesses to just wait until an individual’s civil rights are violated before making any changes. national origin.
Robyn Powell at Rewire:
According to a letter to the House Judiciary Committee last week by 236 disability and civil rights organizations, “H.R. 620 was not written in consultation with representatives of the disability rights community and it would create barriers to the civil rights for persons with disabilities that do not exist in other civil rights laws.”
Despite this strong condemnation, however, the House Judiciary Committee held a markup hearing on Thursday where it voted HR 620 out of committee. The final vote was 15 to 9 along party lines; all of the amendments proposed by Democrats, including additional damages if a business fails to make progress after 120 days, were rejected.
The ADA Education and Reform Act of 2017 will now move to a full House floor vote.
In response to this appalling vote, the National Disability Rights Network issued a statement on Friday: “More than 27 years after the passage of the ADA, the committee’s vote was not an attempt to reform or educate on the ADA, but a blatant attempt by Congress to say that it is ok to discriminate against people with disabilities by not making public accommodations accessible.”
Sara Luterman at NOS Magazine:
Critics of the bill, such as Senior Policy Analyst Dara Baldwin of the National Disability Rights Network, assert that HR 620 would create significant obstacles for disabled people to enforce their rights to go about their business in the community. Susan Mizner, Disability Councel for the American Civil Liberties Union, told NOS Magazine that “HR 620 would make it virtually impossible for people with disabilities to assert their right to access. It creates even more burdens on the individual with disabilities to identify, educate, monitor and pursue access, and creates incentives for businesses to do nothing, until someone with a disability spends all of that time, money and effort to force them to comply with the law. This means too many in our community will remain segregated and stigmatized – unable to socialize with friends at a restaurant, go to the movies with their family, or even receive services at the nearest doctor or dentist office.”
Despite a packed agenda including tax reform, appropriations, the debt ceiling, and incoming midterm elections, multiple advocates indicated that the legislation may be moved to the House floor this month. You can still contact your congressional representative and share your feelings about this legislation before it goes up for a vote. There is still time to make your voice heard. Find out if your congressional representative is co-sponsoring the bill here.

Tuesday, September 12, 2017

Congress Rejects Trump's NIH Cuts, Backs Autism Research


Robert Pear reports at The New York Times that Congres is not only rejecting Trump's proposal to slash NIH funding, but it increasing it.
The Senate Appropriations Committee approved a bipartisan bill last week providing $36.1 billion for the health institutes in the fiscal year that starts next month. Senator Roy Blunt, Republican of Missouri and the chairman of the subcommittee responsible for health spending, said it was the third consecutive year in which he had secured a $2 billion increase for the agency, amounting to an increase of about 20 percent over three years.
...
“The spectacular increase provided by the Senate Appropriations Committee is amazing in the current fiscal environment,” said Anthony J. Mazzaschi, a lobbyist at the Association of Schools and Programs of Public Health. Neither the Senate nor the House paid much attention to the president’s recommendations.”
Autism Spectrum Disorder [ASD].—The Committee encourages NIH’s continued funding of ASD research. The estimated lifetime cost of supporting an individual with autism and intellectual disability  is $2,400,000, and the cost of supporting an individual with  autism without intellectual disability is $1,400,000. Based on these estimates, the yearly cost of ASD to the United States is $236,000,000,000. Medicaid covers autism treatments for nearly half of all children with autism and pays for the majority of residential and day programs serving adults with developmental disabilities. NIH-funded research presents an opportunity to mitigate the disabling effects of autism and reduce the Federal costs associated with it in the future for children and adults.
...

Autism Spectrum Disorder [ASD].—The Committee commends NIH for its commitment to the study of ASD recognizing that there are many different subtypes of autism and that the full range of potential treatments, appropriate to each subtype, have not yet been developed. The Committee encourages NIH to explore a collaborative approach to gain a systematic and comprehensive understanding of each subtype, and to translate this understanding to develop individualized treatments. Such an approach would harness
information from academia and industry, as well as individuals and families impacted by ASD. The European Union has a similar integrated research effort underway to focus on this issue, the European Autism Interventions—A Multicentre Study for Developing New Medications. The Committee encourages the NIH to explore this approach and provide an update in the fiscal year 2019 CJ [congressional justification]

Monday, September 11, 2017

States with "Highest Rates of Autism" -- Really?

In The Politics of Autism, I discuss prevalence and talk of an "autism epidemic."

On social media, you may see a list of the 15 states with the highest rates of autism in America.

There are a couple of things wrong with this list.

First, if you click through the links, you find that it originates with a 2011 article in The Los Angeles Times. Therefore, the data are at least six years old.

Second, the Times article cites figures from the US Department of Education, which does not collect statistics on clinical diagnoses.  Rather, it gathers data from state education agencies, whose definitions of autism vary a great deal.  And there often is a mismatch between the written definition of autism and the evaluation procedures.  Some states may report higher percentages of students receiving autism services because they have a broader definition or place fewer barriers to families seeking those services.

The Centers for Disease Control has issued estimates of nationwide autism prevalence.  These data come from a sample of eleven communities, not any "hard" nationwide count.  No such count exists.

There is no national census, registry or list of people who have autism diagnoses.




Sunday, September 10, 2017

Uncertainty Persists

Uncertainty is a major theme of The Politics of Autism. Here is how I start chapter 3:
If we can land a man on the moon, why can’t we cure autism? Frustrated parents may ask that question, remembering that when John F. Kennedy committed the United States to go to the moon, NASA scientists and engineers figured out how to get there. Ever since Neil Armstrong stepped off the lunar module in 1969, politicians have held up the Apollo project as a model for solving all kinds of problems. But autism is not rocket science. Contrary to the usual meaning of that expression, I hardly suggest that autism science is simple; rather, it is more puzzling than rocket science.
When the moon program was getting under way, there was consensus about the fundamental terms and facts. Although the engineering details were challenging, the basic math and physics behind the mission dated back to Isaac Newton. Autism is different. As we have already seen, it is a contested concept with many uncertainties. Just picture an Apollo program in which experts saw different kinds of moons in different parts of the sky and were not quite sure about the laws of motion.
Uncertainty underlies various ideas about what causes the condition.  Alexandra Ossola reports at CNBC:
"If you've met one person with autism, you've met one person with autism — everyone looks a little different," says Heather Volk, an assistant professor in the department of Mental Health at the Johns Hopkins Bloomberg School of Public Health.
...
Through careful epidemiological studies conducted on large populations, a number of scientists, including Craig Newschaffer at Drexel University and Peter Bearman at Columbia University, have been able to point to some factors that correlate to the risk of autism. Over the years, researchers have determined that childhood or prenatal exposure to toxic chemicals, such as pesticides ; hormone-disrupting phthalates (often found in plastics) and some found in air pollution, have played a role. Mothers who have bacterial or viral infections during pregnancy or those who are obese are also more likely to give birth to babies who are later diagnosed with autism.
It's important to note, however, that these are risk factors for autism, not causes — there's a correlation between these factors and autism, but researchers aren't quite sure of the mechanism that might make the disorder more likely to develop.
...
But even if a well-designed study uncovers a new risk factor, that has to be validated and replicated by other scientists. And so far, Volk says, researchers are not far enough down the road to come up with any interventions to treat or prevent autism based on those findings. There are some findings that, if reflected in policy, are generally beneficial, such as having cleaner air and making baby bottles that are BPA-free. "But we're not far enough to think about pharmacological interventions in pregnancy," Volk says.

Saturday, September 9, 2017

Disruptions in Employment and Education

Uncertainty is a major theme of The Politics of Autism.  In the concluding section, I write:
A key question in autism policy evaluation is simple to pose, hard to answer: How do autistic people benefit? How much better off are they as a result of government action? While there are studies of the short-term impact of various therapies, there is surprisingly little research about the long term, which is really what autistic people and their families care about. As we saw in chapter 4, few studies have focused on the educational attainment of autistic youths. For instance, we do not know much about what happens to them in high school, apart from the kinds of classes that they take. One study searched the autism literature from 1950 through 2011 and found just 13 rigorous peer reviewed studies evaluating psychosocial interventions for autistic adults. The effects of were largely positive, though the main finding of the review is that there is a need for further development and evaluation of treatments for adults.
At The Journal of Autism and Developmental Disorders, Julie Lounds Taylor and Leann Smith DaWalt have a brief report titled "Postsecondary Work and Educational Disruptions for Youth on the Autism Spectrum."

The abstract:
This study examined vocational/educational disruption in the 2–3 years after high school for 36 youth with autism spectrum disorder (ASD). Data were collected three times from parents: during youth’s last year of high school and two times after high school exit. Data were coded into categories indicating any versus no disruptions in postsecondary vocation/education, and group differences in individual (behavior problems, IQ, adaptive behavior, autism severity, stress reactivity) and family (parent depression, anxiety, quality of life; family income and climate) factors were examined. One-half of youth had experienced a postsecondary vocational/educational disruption; parents of those with a disruption had more depressive and anxiety symptoms and lower quality of life while their son/daughter was still in high school.
From the article:
Adding to the growing literature on vocational outcomes for adults with ASD, the present study documented significant vocational and educational instability in the lives of young adults in the years immediately following high school exit. 
Fifty percent of the sample faced disruption within three years.  These disruptions were significant, including job loss and expulsion from college.
Research and services should focus not only on the factors that promote obtaining employment or PSE positions, but also on understanding and developing interventions aimed at addressing the factors that promote sustaining these activities.  [emphasis added] The role of the family has been virtually ignored in studies that examine employment outcomes for adults with ASD; yet, our findings suggest that families may provide supports and scaffolding needed for these adults to sustain employment and PSE. When families are distressed, they may not be able to provide these intensive supports, and disruption occurs. Future studies should more directly examine the link between parent functioning and their ability to provide support to their adult offspring with ASD. It may be that one avenue to promote their vocational/educational stability is to better support their parents. Importantly, these investigations should include both negative and positive indicators of parental/family functioning, as both were related to disruptions in our analyses.

Friday, September 8, 2017

NIH Research Grants

In The Politics of Autism, I discuss the National Institutes of Health.

A release from NIH:
The National Institutes of Health has awarded nine research grants totaling nearly $100 million over the next five years for the Autism Centers of Excellence (ACE), a program that supports large research projects aimed at understanding and developing interventions for autism spectrum disorder (ASD). The ACE program was created in 2007 from the consolidation of previous programs. Grants have been awarded every five years, and 2017 marks the third cycle of ACE grants.
ASD is a complex neurological and developmental disorder that begins early in life and affects how a person acts, learns and interacts with others.
“Autism spectrum disorder has myriad environmental, genetic, neurological and behavioral components,” said Diana W. Bianchi, M.D., director of NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), 1 of 5 institutes funding the ACE program. “These awards will allow us to understand how autism differs in girls versus boys, to develop earlier methods of screening, and to improve treatments based on specific symptoms.”
In addition to NICHD, the NIH institutes that support ACE are the National Institute on Deafness and Other Communication Disorders, the National Institute of Environmental Health Sciences, the National Institute of Mental Health, and the National Institute of Neurological Disorders and Stroke.
The ACE awards seek to build on discoveries of the last 10 years by supporting innovative, multi-disciplinary research that promises to yield interventions and services for people with ASD. According to the Centers for Disease Control and Prevention, about 1 in 68 children(link is external) has been diagnosed with the condition.
The awards will support research at individual centers or at research networks (which involve multiple institutions) dedicated to the study of ASD.

Thursday, September 7, 2017

An App for Police

In The Politics of Autism, I discuss interactions between police and autistic people.  

A release from VariAware:
Vitals is a new technology, a platform with two apps, designed to create safer interactions between law enforcement and people with behavioral, mental health and developmental disorders. A first of its kind, the Vitals first responder App, is a non-intrusive, real-time resource developed as a way to enhance policing, give families of vulnerable individuals more peace of mind and improve the quality of life for people living with “invisible” disabilities.”
St. Paul is the first police department to partner with Vitals and is in the process of training its officers on how and when to use the app. Other metro and Greater Minnesota police departments are planning to implement Vitals in the coming weeks as usage of the new app is expected to spread quickly across the region and country over the next several months.
“I believe Vitals will help police do their tough jobs even better. As a mother of an autistic child, it’s very stressful thinking about how my child would interact with police officers during an active incident,” says Dawn Brasch, mother of an autistic child and director for the Autism Society of Minnesota.
“I applaud the leadership of the St. Paul Police department. They could have waited for others to implement Vitals first. But they saw the need and the potential to save lives and stood up for the mental health community.”
When St. Paul Police leadership learned about Vitals, they knew the app aligned perfectly with their vision of supporting officers’ interaction with vulnerable individuals more effectively. “We are excited about this new partnership with Vitals,” says police chief Todd Axtell.

From WCCO-TV:


Wednesday, September 6, 2017

The Anti-Antivax Guy

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

Rebecca Robbins reports at STAT:
When anti-vaccine activists gather in the shadow of the big black “Vaxxed” bus, it’s easy to spot the guy who’s there without an invitation.
He’s the protester holding a homemade sign declaring that vaccines save lives. He’s often wearing a T-shirt with the name of the polio vaccine pioneer Jonas Salk, stylized like the logo of a rock band. You might even spot him filming a lighthearted video updating his online followers on his quest to chase down the Vaxxed bus tour, which grew out of a controversial anti-vaccination documentary with the same name.
Craig Egan estimates he’s put 7,000 miles on his Toyota Prius subcompact this summer following the bus tour everywhere from the Pacific Northwest to Missouri. And no, he does not mind being called a troll. In fact, he embraces it. He even plans his T-shirts to be as annoying as possible.

Tuesday, September 5, 2017

The Cliff in New Jersey

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.
At app., Jerry Carino talks with New Jersey social worker Bret Vaks. Autistic youths and adolescents have lots of options in the state, he notes, but...
“Then they hit 21, and that ends,” he said. “There is still a significant gap with adult services.”
In May, there were public protests of cuts in services for adults by the state’s Division of Developmental Disabilities.
“I still meet families, and this breaks my heart, who have a child with autism who is now 23 or 24 and they’re sitting home because there is no program for them,” Vaks said. “If the person with autism has significant behavioral challenges and is not high-functioning, is never going to be employed, they need a day program or a group home. Right now those folks are sitting at home because there are no places for them.”
Will the election of a new governor in November make a difference? Vaks is skeptical.
“In my experience elected officials tend to be very supportive of people with disabilities and disability issues if there are other people having conversations with them about it,” he said. “But it’s low on the radar. If you’re a family (with an autistic child), you want support and help but you don’t have time to make the phone calls. There’s not yet enough of the voices of people making calls. You have some groups who do really good work, but politicians respond best to families and not an agency.”

Monday, September 4, 2017

Inequality and Disability in New York

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

Ben Chapman reports at The New York Daily News:
The city is illegally denying necessary services to thousands of students with disabilities — and the poorest kids get cheated the most often, according to advocates and data the Daily News obtained.
As of May, 8,854 public school students with disabilities were lacking services such as speech therapy, physical therapy and counseling, according to figures the city Education Department supplied.
State law requires city schools provide supports for students, and those services are spelled out in the kids’ medical treatment plans. But in thousands of cases, schools don’t have the facilities or staff to deliver mandated services.
The city’s data show students from underserved districts in the south Bronx and Brooklyn are most likely to be deprived of the services they need to learn in comfort and safety.

Sunday, September 3, 2017

A Disturbing Story at a Florida School


At The Tampa Bay Times, Colleen Wright reports:
In 16 years as a school resource officer at Osceola Middle, Ural Darling was trained by the Pinellas County Sheriff's Office to de-escalate chaotic situations, especially when they involved people with disabilities.
But on May 15, a hidden device recorded something different as Darling could be heard mistreating a student with autism — taunting the boy with a pair of handcuffs, threatening to send him to a mental hospital for life, scolding him with rapid-fire talk and forcing him to hold a stack of books.
The boy's mother, suspecting something was wrong at school, had put the recorder in her son's cargo shorts that day.
Just how far did the veteran deputy veer from his training, and from generally accepted guidelines for dealing with autistic children? Pretty far, according to experts in the disability and Sheriff Bob Gualtieri, who fired Darling on Aug. 25.
"That is the antithesis of de-escalation," Gualtieri said. "You should never be contributing to the problem. None of what he did was consistent with any training that he's received."

Friday, September 1, 2017

Paternal Age Is Rising. Will Autism Prevalance Follow?


At Human Reproduction, Yash S. Khandwala  and colleagues have an article titled  "The Age of Fathers in the USA is Rising: an Analysi of 168,867,480 Births from 1972 to 2015."  The abstract:
Mean paternal age has increased over the past 44 years from 27.4 to 30.9 years. College education and Northeastern birth states were associated with higher paternal age. Racial/ethnic differences were also identified, whereby Asian fathers were the oldest and Black fathers were the youngest. The parental age difference (paternal age minus maternal age) has decreased over the past 44 years. Births to Black and Native American mothers were most often lacking paternal data, implying low paternal reporting. Paternal reporting was higher for older and more educated women.
Why mention this study here?
In addition to delayed time to conception, the effects of advanced paternal age on offspring health can be significant. Numerous reports have found increased risk of autism, psychiatric illness, neurologic disease such as neurofibromatosis, pediatric cancer and chromosomal abnormalities in children born to older fathers (Bray et al., 2006Croen... et al., 2007Puleo et al., 2012Snajderova et al., 2012Gratten et al., 2016).