ABA Provider Advocacy Group

The Politics of Autism includes a discussion of major interest groups such as Autism Speaks.

Lauren Rabin writes at The Huffington Post:

ABA is the only empirically validated method to address behaviors and deficits commonly associated with an autism diagnosis. However, it’s intensive and thus expensive which makes insurance coverage of the service extremely important. (A third important feature of ACA was the expansion of Medicaid funding, but we can leave that for another day).

While concern is understandable, there are organizations that are fighting to protect access to these services, including Autism Society of America and Autism Speaks. Another such organization is the National Coalition for Access to Autism Services (NCASS). NCASS is one of the only groups focused specifically on protecting access to autism services.

NCAAS was founded by prominent leaders in the autism community - consisting of organizations like Autism Business Association, Autism Spectrum Therapies, Center for Autism and Related Disorders and Butterfly Effects. These leaders realize that providers of autism services need a voice in order to protect access to quality autism services for all families in need. While NCAAS membership is primarily comprised of providers, its mission is to ensure access to the services needed by the autism community.

It was important for these leaders to join forces rather than advocate in Washington on their own.

“This is an extremely fragmented market made up of many small providers which makes it hard for our voices to be heard on a national level. Many of the leaders in the industry felt it was important to join together and protect the community we serve by ensuring access to evidence-based treatment,” said Justin Funches, a vice president at Autism Spectrum Therapies. Justin explained that together, there is a better chance we will be able to protect these critical services.
...

To learn more about NCAAS visit their website or to learn about one of their top leaders,Autism Spectrum Therapies, click here.

Another provider group is the Coalition of Autism Service Providers (CASP). 

British Hacker

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

Cara McGoogan reports at The Telegraph:

'I won’t go to America,’ says Lauri Love. ‘But I might die – that’s my alternative.’ Long-term imprisonment in an American jail or suicide: such is the 32-year-old British hacker’s bleak assessment of his options as he contemplates his future from a Bayswater café.

Two years ago, officers from the Metropolitan Police Service appeared at the door of the Suffolk home where Love lives with his parents to arrest him on an extradition request from the US. His alleged crime? Hacking into dozens of government computer systems, including those of the FBI, US Army and Department of Defense, stealing ‘massive amounts’ of data and defacing official websites.

Last September, Westminster Magistrates’ Court granted the extradition request. If found guilty of the charges, Love faces up to 99 years in prison and $9 million (£7 million) in fines. He is appealing the decision in the High Court in November on the grounds that he has Asperger’s syndrome and severe depression, and would be a suicide risk in the care of a US penal system unable to deal with his conditions.

...
If Love’s plight sounds familiar, that’s perhaps because it has echoes of the case of Gary McKinnon, the British hacker who was arrested in 2002 for allegedly penetrating the defences of Nasa and Pentagon computers in pursuit of evidence of UFOs. He believed the US government was hiding extraterrestrial technology that might solve the world’s energy problems.

Three years later, McKinnon was charged by US authorities who applied for his extradition from the UK. The case dragged on for years, during which time McKinnon, like Love, was diagnosed with Asperger’s syndrome. By 2012, when Theresa May, then Home Secretary, ruled McKinnon would not, after all, be extradited, he was holed up in his house, researching suicide methods.

But their cases differ in one crucial respect. After ruling on McKinnon’s case, May introduced legislation that transferred the final decision-making power to the courts, making it difficult for the current Home Secretary, Amber Rudd, to intervene in Love’s case. All now rests on the High Court’s decision in November.

Restraint and Seclusion: State and Local Policy

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

Douglas J. Gagnon, Marybeth J. Mattingly, and Vincent J. Connelly, have an article in The Journal of Disability Policy Studies titled "The Restraint and Seclusion of Students With a Disability: Examining Trends in U.S. School Districts and Their Policy Implications." The abstract:

Restraint and seclusion are possible aversive responses to problematic student behavior used in some public schools, most commonly on students with a disability. Considerable recent attention has been paid to these practices both in the media and in Congress, and subsequently roughly half of U.S. states have made changes to their laws or policy statements around restraint and seclusion since 2009. In this article, we illuminate trends in restraint and seclusion across the United States in recent years to better inform policy discussions on these matters. Specifically, we examined rates of reported restraint and seclusion across U.S. districts in the 2009–2010 and 2011–2012 school years. We found that general trends persist between the data collections: Most districts report no/little use of restraint or seclusion, with a small percentage of districts reporting exceedingly high rates. Furthermore, the vast majority of variation exists within rather than between states, which may suggest the importance of local factors such as district policy, school culture, and practitioner support in determining the frequency of restraint and seclusion in schools.

Pushback on Trumpcare

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.

Advocates with disabilities from @nationaladapt protested cuts to Medicaid today in the Hart Senate Building. This takes real courage. pic.twitter.com/UIvnj5PVXy

— Bernie Sanders (@SenSanders) July 25, 2017

 

Medicaid Cuts Would Hurt Schools

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.

Edwin Rios at Mother Jones:

As mandated by the Individuals with Disabilities Education Act (IDEA) from 1975, schools must provide a free and appropriate public education to students with disabilities. But Congress has historically fallen short on covering the cost of educating special-needs students under IDEA, so states and local agencies have turned to Medicaid to help offset the difference and pay the cost for medical services and equipment. Starting in 1988, schools, like hospitals and insurance providers, have been able to request reimbursements from the Department of Health and Human Services for such expenditures.

In 2015, schools received nearly $4 billion in Medicaid funding, according to the Center on Budget and Policy Priorities, less than a third of what’s doled out for special education spending under IDEA.

That $4 billion has been essential to schools covering the costs of speech and physical therapy, behavioral services, and medical equipment, such as wheelchairs and walkers. For low-income students, districts use such funds to pay for vision, hearing, and other health screenings, as well as for school nurses and mental health services. It’s also important to note that school districts don’t just offer services to poor and disabled students during school hours; they act as a connecting point to enroll eligible low-income families in Medicaid and in the Children’s Health Insurance Program and help families find health care providers. In turn, schools get reimbursed for their outreach efforts.

Sherri Smith, the superintendent of Lower Dauphin, a suburban Pennsylvania school district of just 4,000 students, was also in D.C. recently to meet with representatives. She says the small but targeted $50,000 in Medicaid funding her district receives each year helps pay for more medical-related services, such as occupational and physical therapy, along with mental health services to serve a growing need for students in the district. The money also allows the district to pay for additional nurses and personal care aides for students with disabilities and low-income students.

“Schools are doing more outside the peripheral of just teaching and educating,” Smith says. “So actually getting Medicaid dollars for medical services for our students, which they need, allows us the opportunity to do so. I’m afraid that without those kinds of dollars, that will go away.”

Disability Turnout in 2016

In The Politics of Autism, I discuss the issue's role in presidential campaigns. As I explain in the book, Hillary Clinton has a long history with the issue. 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 disability issues more generally.

Fact sheet: Disability and Voter Turnout in the 2016 Elections Lisa Schur and Douglas Kruse

Key points:

• 16.0 million people with disabilities reported voting in the November 2016 elections.

• The voter turnout rate of people with disabilities was 6 percentage points lower than that of people without disabilities. 

• Employed people with disabilities, however, were just as likely as employed people without disabilities to vote, suggesting that employment helps bring people with disabilities into mainstream political life. 

• The voter registration rate of people with disabilities was 2 percentage points lower than that of people without disabilities. The lower voter turnout was due both to a lower registration rate among people with disabilities, and to lower turnout among those who are registered. 

• If people with disabilities voted at the same rate as people without disabilities who have the same demographic characteristics, there would be about 2.2 million more voters. These figures are based on analysis of data from the federal government’s Current Population Survey Voting Supplement for November 2016. The computations were made using six disability questions introduced on the Current Population Survey in 2008. 

Note to political activists:  if you mobilize people with disabilities, you expand the electorate and you get different outcomes. 

DeVos Literally Does Not Know the First Thing about IDEA

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

DeVos at Office of Special Education Programs Leadership Conference:

Student success requires we put each of them at the center of everything we do, especially when things don't go right.

That’s why I’ve reestablished equal treatment of IDEA cases in the Office for Civil Rights, ensuring they are prioritized as much as any other complaints.

At Education Week, Evie Blad interviews Catherine Lhamon, the assistant secretary for civil rights in the Obama administration’s Department of Education:

I certainly don’t think that the posture of this administration—in what it has said and the actions it has taken to date—is consistent with the traditional ebbs and flows of administration change. The particular hostility to civil rights enforcement and a callous and astonishing lack of knowledge about the civil rights minimums—that are bipartisan and long-standing in this country—amaze me.

To be concrete about that, just two days ago, the secretary of education gave a speech in which she said that she directed the office for civil rights to return to improved [Individuals with Disabilities Education Act] enforcement, but the office for civil rights does not enforce the IDEA. So that core lack of knowledge about the jurisdictional charge for the jewel of civil rights within the Department of Education is distressing and dangerous and is unprecedented in the existence of the Department of Education. So I don’t think what we are witnessing today is just the shift in administration. I think what we are witnessing today is dangerous on a level that we have not yet seen as a country.

The Business Council of Alabama Has Some Explaining To Do

The Politics of Autism includes an extensive discussion of insurance legislation in the states.

Mary Sell reports at The Times Record:

A group of lawmakers who fought for expanded insurance coverage for children with autism said they weren’t invited to the Business Council of Alabama’s summer conference at Point Clear next month.

The BCA was an opponent of the autism coverage legislation that was approved overwhelmingly by lawmakers, calling it an Obama-style mandate on employers that would increase premiums.

Rep. Jim Patterson, R-Meridianville, sponsored the bill in the House. He said this is the first time he hasn’t been invited to the BCA’s summer conference since he was elected in 2010.

“It looks like I’m in pretty good company,” Patterson said today. He also said he’s always had a good relationship with the BCA.

“I have a very good voting record when it comes to business,” he said. But on the autism issue, he said he listened to people in his area.

“I’m more concerned about pleasing my district than I am any group in Montgomery,” he said.

Brian Lyman reports at The Montgomery Advertiser:

Two senators said Thursday the Business Council of Alabama froze them out of an annual governmental affairs conference because of their support for legislation mandating coverage of autism therapies.

The House sponsor of the legislation and another senator who supported it said they also weren't invited, though they were not entirely certain why.

Sens. Dick Brewbaker, R-Pike Road and Cam Ward, R-Alabaster, who pushed hard for the legislation last spring, said in separate interviews they believed their support meant invitations to an annual summer conference hosted by BCA in Point Clear were withheld this year.

“I was viewed as the face of that bill,” Ward said. “That created some ill feelings with them and leadership.”

Nancy Hewston, a spokeswoman for BCA, strongly denied Thursday that the autism bill -- which BCA opposed -- was the reason they were not on the guest list, though a statement from Hewston did not give another reason.

Kyle Whitmire writes at the Alabama Media Group:

"They're mad at me because of the autism bill," Brewbaker said.

Brewbaker was a little more candid than others I spoke with. He's not running for reelection next year. He called the BCA a "punitive organization." While he supports 90 percent or more of what the BCA proposes, that apparently wasn't enough for them.

"That's the way politics is," he said. "It's a contact sport, and you have to have a thick skin. It's their conference and they can invite whoever they want. There are no hard feelings here."

Among a subset of anti-crony capitalism Republicans, BCA has been making enemies. State Rep. Ed Henry is among them. Like Brewbaker, he too, has said he won't seek reeelection and now he's not holding anything back.

"There's quite a few of us who tanked all their bull crap this year and now they're mad at us," he said.

Henry's no AEA Democrat or liberal snowflake. He supported Donald Trump before Trump was cool (at least among Republicans). He says his experience in the Legislature has been eye-opening.

"If corporate welfare is not as bad as regular welfare, it's right there on the cusp," Henry said. "We don't even know who is getting any of this stuff half the time when we vote on it."

Fighting Trumpcare

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.

People with disabilities and their families have pushed back against Trumpcare.  Their protests have impact because the public tends to have more sympathy for the disabled than for able-bodied program recipients.

Jeff Stein at Vox:

“I think the concern of citizens generally has made an impact on me, yeah. Obviously, I get it a lot of feedback from the other side, too, in editorials and newspapers like the Wall Street Journal attacking me,” said Sen. Rob Portman (R-OH), one of the crucial swing votes on the bill. “And then you have the protesters on the other side ... those voices are heard, absolutely.”

It’s hard to keep an exact tally of the flurry of health care activism since Republicans took control of Congress. Daily Action, one progressive group, reported 200,000 calls — which, when added together, would stretch to a combined 495 days of call times — to Senate GOP offices over the health bill. Dozens of activists with disabilities have been arrested at sit-insprotesting Medicaid cuts throughout the country.

More than 400 protesters have been arrested in the Capitol alone over the past three weeks, including the NAACP’s William Barber. Activists have chartered planes to fly anti-TrumpCare banners in West Virginia and Ohio; others have driven anti-TrumpCare tractors or launched cross-state bus tours.

In Fort Wayne, Brian Francisco reports at The Journal-Gazette:

About 40 people played dead for one minute Tuesday outside the E. Ross Adair Federal Building and U.S. Courthouse downtown.

Holding paper replicas of tombstones, they lay down on the plaza in front of the building to silently protest Republican efforts in Congress to repeal and replace the Affordable Care Act. Rowan Greene, dressed as the Grim Reaper, walked among the reposing crowd.

Their demonstration – organized by Indivisible, Fort Wayne Liberation Movement and United Activists of Fort Wayne – was aimed at a tenant of the federal building: Sen. Todd Young, R-Ind., who has not said how he will vote on the Better Care Reconciliation Act.
...

Susan Catterall of Hamilton, a mother of two adult children with autism, said people with disabilities are at risk of losing medical care if Congress curbs state Medicaid expansions created by the Affordable Care Act. She said Indiana's expanded Medicaid program, known as Healthy Indiana Plan 2.0, has drastically cut the waiting time for people enrolling in home services for autism and developmental disabilities.

“This is the United States of America. We are capable of taking care of the disabled, the poor and the elderly,” Catterall shouted to the crowd.

AMA Opposes Vaccine Commission

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

Sara Berg writes at AMA Wire:

At the 2017 AMA Annual Meeting in Chicago, the AMA House of Delegates (HOD) adopted policies aimed at protecting children’s health by addressing vaccine policy...
It remains clear that the use of vaccines benefits public and individual health. Yet the authors of a resolution on the topic said that “physicians remain concerned the current federal administration may attempt to establish new vaccine policy based on unfounded and unscientific facts.”

In recognition that vaccinations are safe and effective, and that their benefits far outweigh any risks, the AMA adopted policy that:

• Supports the rigorous scientific process of the Advisory Committee on Immunization Practices as well as its development of recommended immunization schedules for the nation.
• Recognizes the substantial body of scientific evidence that has disproven a link between vaccines and autism.
• Opposes the creation of a new federal commission on vaccine safety whose task is to study an association between autism and vaccines.

“The AMA fully supports the overwhelming body of evidence and rigorous scientific process used by the Advisory Committee on Immunization Practices which demonstrate vaccines are among the most effective and safest interventions to both prevent individual illness and protect the health of the public,” William E. Kobler, MD said in a statement. Dr. Kobler is a member of the AMA Board of Trustees.

“We are deeply concerned that creating a new federal commission on vaccine safety to study the already disproven association between autism and vaccines would cause unnecessary confusion and adversely impact parental decision-making and immunization practices,” Dr. Kobler added. “The United States has a long-standing system for ensuring the ongoing development, safety, and efficacy of vaccines.”

“The AMA will continue its work to promote public understanding and confidence in the use of vaccines in order to prevent resurgence in vaccine-preventable illnesses and deaths,” concluded Dr. Kobler.

Crime Against People with Disabilities

In The Politics of Autism, I write that people with disabilities are victims of violent crime much more often than people without disabilities. The Bureau of Justice Statistics does not report separately on autistic victims, but it does note that the victimization rate is especially high among those whose disabilities are cognitive. 

Erika Harrell has a report at the Bureau of Justice Statistics titled "Crime Against Persons with Disabilities, 2009-2015 - Statistical Tables."

In 2015, the rate of violent victimization against persons with disabilities (29.5 victimizations per 1,000 persons age 12 or older) was 2.5 times higher than the rate for persons without disabilities (11.8 per 1,000), which was adjusted to account for the differences between the age distributions for persons with and without disabilities (see Methodology) (figure 1). 1 In every year from 2009 to 2015, the rate of violent victimization against persons with disabilities was at least twice the age-adjusted rate for persons without disabilities. The rate of violent victimization increased from 2011 to 2012 for both persons with and without disabilities. From 2012 to 2015, the rate  emained steady for persons with disabilities and decreased for persons without disabilities.

...
During 2011-15, persons with cognitive disabilities had the highest rates of total violent crime (57.9 per 1,000), serious violent crime (22.3 per 1,000), and simple assault (35.6 per 1,000) among the disability types measured [emphasis added]

Conservative Case for Medicaid

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.

Since the 1960s, when California Governor Ronald Reagan signed the Lanterman Act, conservative Republicans have often supported legislation to help people with disabilities. (Rick Santorum, for instance, was prime Senate sponsor of the Combating Autism Act of 2006.)  One persuasive argument for conservative support is that it is more efficient and effective to help people with disabilities achieve independence than to pay for their institutionalization. Pay now, or pay later.

A couple of recent articles explain why conservatives should oppose the Medicaid cuts in BCRA.

Matthew Herr at The Hill:

HCBS keep people with mental illness, Intellectual & Developmental Disabilities (I/DD), and traumatic brain injury (TBI) — including members of our state’s sizable veteran population — in their communities and out of institutions. The data has shown over, and over, and over again that HCBS are one of the most fiscally effective parts of Medicaid. They are two to 30 times less expensive than comparable institutional placement. And they produce better results.

By keeping people in their communities, HCBS also promote independence and self-reliance. People who stay in their communities contribute to their communities. They live fuller, freer, more productive lives. They are more likely to get and maintain employment, and pay taxes as a result. Without access to HCBS, more Americans will face a life of purgatory in costly state-managed institutions — where the government can decide where you will live, when you eat, and what you do in your spare time.

With soaring healthcare costs, we absolutely need to rein in spending where it is wasteful. But why are we trying to pass healthcare legislation that would gut the most fiscally effective parts of Medicaid?

Jason Sattler at USA Today:

The 50 unique state programs cover 60% of all children with disabilities, affirming the “pro-life” decisions of parents to have children regardless of the potential complications. The expenses incurred by parents of kids with severe special needs are so immense that even affluent families could be bankrupted without the supplemental support of Medicaid.

The Senate GOP argues its proposed Medicaid cuts of up to 39%, which survived the bill’s second draft intact, won’t hit families caring for children with disabilities.
But don’t believe the spin.

Yes, there is a “carve out” to protect “blind and disabled” children, but that will only protect a “fraction of kids” with severe special needs, according to Janis Guerney, co-public policy director at Family Voices. Additionally, kids with “complex conditions — such as cystic fibrosis, autism and Down syndrome — would be vulnerable to whatever cuts their states make,” according to Kaiser Health News’ Jordan Rau.

States, which have to balance their budgets by law, will be forced into constant “Sophie’s Choices” requiring them to decide who is most deserving of care — the elderly, poor kids or people with disabilities.

IDEA Performance

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

From the US Department of Education:

Following is a list of each State’s performance in meeting the requirements of IDEA Part B, which serves students with disabilities, ages 3 through 21:

 MEETS REQUIREMENTS
Alabama, Connecticut, Delaware, Federated States of Micronesia, Iowa, Kansas, Kentucky, Massachusetts, Minnesota, Missouri, Montana, Nebraska, New Hampshire, New Jersey, North Carolina, North Dakota, Oklahoma, Pennsylvania, Republic of Palau, Republic of the Marshall Islands, South Dakota, Tennessee, Virginia, Wisconsin, Wyoming

 NEEDS ASSISTANCE (one year)
District of Columbia, Florida, Illinois, Indiana, Nevada, West Virginia

 NEEDS ASSISTANCE (two or more consecutive years)
Alaska, American Samoa, Arkansas, Arizona, California, Colorado, Commonwealth of the Northern Mariana Islands, Georgia, Guam, Hawaii, Idaho, Louisiana, Maine, Maryland, Michigan, Mississippi, New Mexico, New York, Ohio, Oregon, Puerto Rico, Rhode Island, South Carolina, Texas, Utah, Vermont, Virgin Islands, Washington

 NEEDS INTERVENTION (six consecutive years)
Bureau of Indian Education

IDEA PART C DETERMINATIONS:

Following is a list of each State’s performance in meeting the requirements of IDEA Part C, which serves infants and toddlers birth through age 2:

 MEETS REQUIREMENTS

Alabama, Connecticut, District of Columbia, Georgia, Indiana, Iowa, Kentucky, Maryland, Michigan, Minnesota, Mississippi, Missouri, Nevada, New Hampshire, New Mexico, New York, North Carolina, North Dakota, Ohio, Oregon, Pennsylvania, Puerto Rico, Rhode Island, Texas, Utah, Virginia, Washington, West Virginia, Wisconsin, Wyoming

 NEEDS ASSISTANCE (one year)

Arkansas, Colorado, Idaho, Kansas, Montana, Nebraska, South Carolina

 NEEDS ASSISTANCE (two or more consecutive years)

Alaska, American Samoa, Arizona, Commonwealth of the Northern Mariana Islands, Delaware, Florida, Guam, Hawaii, Illinois, Louisiana, Maine, Massachusetts, New Jersey, Oklahoma, South Dakota, Tennessee, Vermont, Virgin Islands

 NEEDS INTERVENTION (one year)

California

Trump's Fake Appeal on Health Care

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.

In his weekly radio address, Trump attacked the Affordable Care Act and mentioned an autism family whose premiums had gone up.  What he did not mention is that Trumpcare would hurt people with autism.

• The Medicaid cuts would hit millions of kids with disabilities such as autism.
• The cuts would cause states to scrap home and community-based services, notwithstanding a sham "demonstration project" in the bill.
• A new provision would cause premiums to soar for people in the individual market with preexisting conditions such as autism.  A letter from America's Health Insurance Plans and the Blue Cross/Blue Shield Association explains:

The Consumer Freedom Option allows insurers to sell products that must comply with all rules in current law alongside plans that do not comply with current insurance reforms – meaning they are allowed to refuse offering coverage to certain people, charge different rates based on age and gender, and not provide comprehensive health benefits. This would allow the new plans to “cherry pick” only healthy people from the existing market making coverage unaffordable for the millions of people who need or want
comprehensive coverage, including, for example, coverage for prescription drugs and
mental health services.

...
As healthy people move to the less-regulated plans, those with significant medical needs
will have no choice but to stay in the comprehensive plans, and premiums will skyrocket
for people with preexisting conditions. This would especially impact middle-income families that that are not eligible for a tax credit. Taxpayers will pay more to finance
federal tax credits for the individuals in comprehensive plans and these costs will continue to increase, even with dedicated funding. Risk adjustment is also critical to making the individual market sustainable, but can only work when there are uniform
benefit requirements across the market.

HCBS Provision

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.

Michelle Diament reports at Disability Scoop:

Tucked inside the latest version of the Senate bill, unveiled Thursday, is a proposal for a new waiver that states could apply to “for the purpose of continuing and/or improving home and community-based services.”

However, the waiver proposal, which would allow states to receive full federal funding for home and community-based services, is limited in scope. It would be available as a four-year demonstration project for just a handful of states and overall funding for the initiative would be capped at $8 billion total.

As NAACP leader Roy Wilkins once said of a weak civil right bill: the provision is a "soup made from the shadow of a thin chicken that had starved to death."

Medicaid Cuts Would Hurt Autistic Kids

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.

At Kaiser Health News, Joran Rau reports that several million children would not meet the Senate’s restrictive definition of blind and disabled" children whose health coverage would be excluded from the Medicaid cuts in BCRA.

Of the 5 million to 6 million children with special needs estimated to be enrolled in Medicaid, 1.2 million would meet the Senate’s definition of ‘disabled,’ which relies on strict criteria to qualify for federal Supplemental Security Income, or SSI, payments. Those children must come from impoverished families who can prove they are blind or have “marked and severe functional limitations” that are fatal or will last continuously for at least a year. Under the Senate bill, the federal government would continue to pay for a portion of their medical bills without setting a financial ceiling.

That would not be the case for the majority of other children with special needs on Medicaid. They qualify because their families have low incomes, so there has been no reason for states to keep track of them separately. Under the Senate plan, the federal government would give states the same amount of Medicaid funding for those children as they would for a child without disabilities, even though that child’s health costs would likely be much higher.

“The potential consequences could be devastating,” says Sara Bachman, another researcher at the Catalyst Center. “States on their own are quite variable on the ability to support the services kids need. The federal participation in the Medicaid program is in an essential underpinning. States are really going to be in a pickle.”

 Uncertainty is a major theme of The Politics of Autism.  The Rau article continues:

A Republican Senate aide, who was authorized to speak only on condition of anonymity, says Senator Orrin Hatch (R-Utah), the chairman of the Senate Finance Committee, and several other Republicans wanted to exempt all children with disabilities from the per capita payment limits. But bill drafters ran into a problem: Lack of information about the broad population of children with special needs on Medicaid impeded them from crafting a more expansive definition, and the Congressional Budget Office could not estimate the costs, the aide says.

“We were trying to get as many of them, if not all of them, exempted from the cap,” the aide says. “But the problem is the only good definition and the only good numbers we had were for SSI.”

Autism and Family Court

In The Politics of Autism, I discuss interactions between the justice system and autistic people.

Kelly C. Wall and Karen Markle write at The Legal Intelligencer:

In high-conflict cases with ASD children, like divorces or custody disputes, it is common that the parents do not want to cooperate with each other and refuse to identify a lead parent (a decision maker) on how to raise the child. This parent is more likely to coordinate special services for the child, doctors' appointments, transportation and therapy. The court will want to know who this decision maker is, which parent has the most stable household and which parent can provide consistency. Conflict occurs when the parents cannot agree on a plan for a number of issues for their child. These include, but are not limited to: discipline, therapeutic treatments and frequency, medication and dosage, diets, education (traditional classrooms or special needs classes) and routines (how often is the child switching between homes and parents).
...
Regardless of the role the attorney is playing, the attorney's representation is all encompassing and he or she has a duty to present a complete record, which will require knowledge of the ASD child's needs. As a representative of the client, it is incumbent upon the lawyer to understand all of these issues so that he or she can elicit this information during testimony and prepare the client to answer these questions. In complex cases, the lawyer can seek expert advice or interview the child's service providers for a better understanding of the child's need.

Hill Days

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.

Christina Samuels reports at Education Week:

Special educators are fanning out across Capitol Hill Tuesday, spreading a few targeted messages for Washington lawmakers: Congress should pass a budget that allocates more money to special education and gifted education, oppose efforts to divert public money to private school vouchers, and fight any bill that would cut Medicaid coverage for children's health services.

So-called "Hill days" are a tradition for advocacy groups of all types. But members the Council of Exceptional Children and the Council of Administrators of Special Education, who have joined together this year for a "special education legislative summit," report feeling particular pressure to get their points across.

"I am feeling a huge sense of urgency," said Tara Rinehart, the director of special services for the Wayne Township in Indianapolis, a 16,200-student urban district. She met with her superintendent before making the trip to hammer out talking points to share with Indiana's congressional delegation—one of which was to preserve Medicaid.

The district, like many others, uses Medicaid funds to provide services to children with disabilities who are eligible for the program. But the program has a broader reach for her student body, she said: About 55 percent of the children in the district rely on the program.

Paul Zinni, the superintendent of the 700-student Avon, Mass., district, said one of his goals is a perennial one for special educators—getting a larger federal investment in special education. And he's also worried about school choice provisions that might leave a difficult-to-fill hole in his budget.

Best NYC School Districts

In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act.  Autism parents have a surprisingly hard time finding out what schools are best for autistic children.  Why? IEPs are confidential.  Therefore special ed parents have a hard time identifying and reaching one another.  There are other organizational barriers as well:

First, parents might be leery of drawing public attention to their children's disabilities. In the case of high-functioning autism, the other kids will probably notice a difference without necessarily knowing the label.  Once the label is public, however, the child might be subject to more bullying.

Second, special ed parents might be reluctant to share information with one another.  Those who get a "good" IEP might worry that others will want the same deal and create a "run on the bank."

Third, organizing takes time, which is one thing that the parents of autistic kids and other special-needs students do not have.

Fourth, special needs are diverse.  The things that paraplegic kids need (e.g., wheelchair ramps) are totally different from autistic kids need (aides, communications devices).  A dollar that goes to one need is a dollar not available to another.  Even within the autism spectrum, there are diverse needs that might make it hard for parents to form a community of interest.

In this light, this blog post about the 7 Best School Districts in New York City for Autism is most unusual.

If you want to make sure that you will have plenty of schools which offer programs for children with autism in your district, take a look at this list of the best school districts in New York City for autism. New York City is divided into five boroughs and 32 geographic districts. Each district has its own superintendent and receives guidance from a council made up of parents and local representatives. There are around 750 attendance zones and families with children often choose where to buy an apartment according to desirable zones and districts. Clara Hemphill, the editor of a website Inside Schoolswhich provides details and statistics on every public school in New York City, stated that there was an enrollment boom in the most desirable school districts such as District 15 and District 2 and it declined in undesirable districts such as District 5 and District 16. Anyhow, New York City is generally a great place for children with special needs, including those with autism spectrum disorder. There are many great summer camps in the area and you can see the ones we recommend on our list of 10 best summer camps in New York for children with special needs.

Excellent Description of Autism Uncertainty

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.

At The Guardian, David Mitchell (translator of The Reason I Jump) writes:

The road to understanding autism is unfinished, zigzagging and punctuated by speed bumps, the first of which is the question that transformed my life as a dad in 2008: “What is autism, anyway?” My son was three years old when he was diagnosed, but autism resists definition, vigorously. Google Down’s syndrome or Parkinson’s disease, and you’ll get a broadly agreed-upon set of causes and criteria. Google “autism”, and you get a can of worms, a minefield, academic papers and a shouting match.

Pro-Vaccine Doctor to Head CDC

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

Brad Reed reports at Raw Story:

The Trump administration on Friday announced that it was appointing Brenda Fitzgerald, who has served as Georgia’s Public Health Commissioner since 2011, to be the new director of the Centers for Disease Control and Prevention. 

While Fitzgerald is widely respected in public health circles, she is highly controversial among a certain segment of President Donald Trump’s base: Anti-vaccination activists who had previously been encouraged by Trump’s public denunciations of mandatory vaccination programs. 

Jake Crosby, who runs the Autism Investigated anti-vaccination website, warned Trump last week that he would be betraying his anti-vaxxer supporters if he appointed Fitzgerald to head CDC. 

In particular, Crosby pointed out that Fitzgerald recently wrote that all studies that have purportedly linked childhood vaccinations with autism had been “debunked.”

Medicaid Cuts Hurt Kids with Disabilities

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

Stacy E. Wilson, president of the Children’s Hospital Association of Texas, writes at The Austin American-Statesman:

In 1965, the federal government made a promise to children with disabilities and from low-income families: They would have health coverage. In 2017, the federal government is about to break that promise. The Better Care Reconciliation Act of 2017 jeopardizes children’s access to health care because it no longer guarantees health coverage through the Medicaid program. Instead, the bill caps the federal government’s funding for children’s health care, leaving innocent children, who cannot control what family they are born into or what ailments they are born with, at the mercy of appropriators.

While the bill does take some positive steps toward protecting children, including exempting children with disabilities from per capita caps, those children are still at risk. Once the federal government limits Medicaid funding, states will need to make up the difference or limit the services or the number of Medicaid enrollees to stay under the federal cap. And they are likely to do this through across-the-board cuts, which will affect all Medicaid enrollees, including children with disabilities.