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Thursday, July 20, 2017

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.

Wednesday, July 19, 2017

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:
“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.

Tuesday, July 18, 2017

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]

Monday, July 17, 2017

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.

Sunday, July 16, 2017

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

Saturday, July 15, 2017

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 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.

Friday, July 14, 2017

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."

Thursday, July 13, 2017

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.”

Wednesday, July 12, 2017

Autism and Family Court


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.

Tuesday, July 11, 2017

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.

Monday, July 10, 2017

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.

Sunday, July 9, 2017

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.

Saturday, July 8, 2017

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.”

Friday, July 7, 2017

Medicaid Cuts Hurt Kids with 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.

Thursday, July 6, 2017

Employment, Unemployment, Disability

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

In 2016, 17.9 percent of persons with a disability were employed, the U.S. Bureau of Labor Statistics reported today. In contrast, the employment-population ratio for those without a disability was 65.3 percent. The employment-population ratio for both persons with and without a disability increased from 2015 to 2016 (by 0.4 percentage point for persons with a disability and by 0.3 percentage point for persons with no disability). The unemployment rate for persons with a disability, at 10.5 percent, was little changed from the previous year, while the rate for those without a disability declined to 4.6 percent. The data on persons with a disability are collected as part of the Current Population Survey (CPS), a monthly sample survey of about 60,000 households that provides statistics on employment and unemployment in the United States. The collection of data on persons with a disability is sponsored by the Department of Labor's Office of Disability Employment Policy. For more information, see the Technical Note in this news release.
Highlights from the 2016 data: 
--Nearly half of all persons with a disability were age 65 and over, about three times larger than the share of those with no disability. (See table 1.)
--For all age groups, the employment-population ratio was much lower for persons with a disability than for those with no disability. (See table 1.) 
--For all educational attainment groups, jobless rates for persons with a disability were higher than those for persons without a disability. (See table 1.
--In 2016, 34 percent of workers with a disability were employed part time, compared with 18 percent for those with no disability. (See table 2.) 
--Employed persons with a disability were more likely to be self-employed than those with no disability. (See table 4.)

Wednesday, July 5, 2017

Autism Conference in Tennessee

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

The Chattanoogan reports:
Scott Kramer, an autistic adult and program director of the GCA Centre for Adult Autism (Centre), will be launching the first adult autism conference east of the Mississippi River. The Inaugural Tri-State Adult Autism Symposium Conference is the first autism conference east of the Mississippi to focus fully on adult autism themes (employment, independent living, social relationships, health and wellness, and research). The conference will be taking place on Saturday, July 22, in Chattanooga at Red Bank Baptist Church, 4000 Dayton Blvd.
Mr. Kramer talked with about 25 executive directors in the disability community from Tennessee, Georgia, and Alabama. "The overwhelming responses that the directors gave convinced me that I had found a 'gold mine of an opportunity' to reach out to the adult autism community in those three states." Formed with the idea of building community, Mr. Kramer recognized the need for this type of conference. "Countless numbers of autistic adults never had their social needs met in childhood, so those needs exist to this day. What this conference does is have social networking events take place the day before and day of the conference. By doing so, the social needs of these individuals can be better met."
"Approximately one to one and a half percent of this country's population is autistic. According to the U.S. Census Bureau in 2015, just over 77 percent of the country's population is at least 18 years of age. With a population of just 22 million people in the states of Tennessee, Georgia, and Alabama, roughly 190,000 autistic adults live in the area that the conference is focusing to serve," officials said.
For more information, contact Scott Kramer at 423-598-9516 or by email at Scott.Kramer@chattanoogaautismcenter.org 

Tuesday, July 4, 2017

Diagnosis and Frustration

In The Politics of Autism, I discuss evaluation and diagnosis of young children.

At The San Diego Union-Tribune, Bradley J. Fikes writes of the Samo family, which experienced frustration in getting an autism diagnosis for their son.
The Samos are fortunate to live in San Diego, which has strong programs to detect and treat autism and other neurological conditions. These include programs offered by University of California San Diego at its Autism Center of Excellence, at https://autism-center.ucsd.edu, and Autism Society San Diego at www.autismsocietysandiego.org. The San Diego Regional Center, at http://sdrc.org, helps individuals with a variety of developmental disabilities.
Dayna Hoff knows the Samo family’s frustration first-hand. She and husband Todd Hoff created San Diego-based Autism Tree Project Foundation in 2003 after their son Garret was diagnosed with autism. Garret was diagnosed at two years and nine months, and getting that diagnosis took nine months, Dayna Hoff said. After receiving therapy Garret, now 17, is doing well.

“It’s really disappointing to me to hear that this has happened, but it’s not surprising, because that’s why the foundation even exists,” said Hoff, the foundation’s volunteer executive director.
Pediatricians are more responsive than before, Hoff said. However, Hoff said they are at a disadvantage in detecting developmental delays. They simply don’t see the children enough to have a comprehensive understanding of their development. They usually see children when they’re sick.
In 2005 Autism Tree started a free preschool screening program to identify children at risk of developmental delays, including autism. Children found to be at risk are referred to specialists for a definitive diagnosis. The program works with preschools in San Diego and the San Francisco Bay Area. Go to j.mp/preschoolaut for more information.
“Every preschool director I’ve ever met, and teachers, have an absolute sense of urgency when they see that a child isn't meeting a developmental milestone,” Hoff said. “It really pops out to them when a child isn't meeting a milestone because there's all these other children right next to them.”
Go to www.autismtreeproject.org for more information on the foundation’s services.

Monday, July 3, 2017

Ernst and Young and Neurodiversity

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

Olga Khazan writes at The Atlantic about Ernst and Young:
[Hiren] Shukla leads EY’s neurodiversity program, a small—at least for now—initiative by the firm to recruit and hire people on the spectrum to work on data-heavy tasks like process improvement and cybersecurity. Instead of checking for a firm handshake and can-do smile during an hourlong meeting, EY takes these job candidates through a two-week process that combines virtual interaction and an in-house “superweek” of team building and skills assessment. During that week, EY tries to acclimate the individuals to the office environment. Those who “pass” get job offers.
...

The challenges to growing the program have been in finding the right people, Shukla says—the company works with university offices of disability and vocational rehab agencies to recruit potential new employees. People with autism are often un- or under-employed, even in their 20s. Those who do have jobs might be stuck in roles like stocking shelves or filing, which spare them human interaction but also don’t utilize their intellect.
Neurodiverse employees bring unique skills to the job, Shukla said, like blunt honesty. When the company on-boards one of its 50,000 new employees each year, it sends the new hire instructions to set up their voicemail. “One of the [neurodiverse] individuals said, ‘The instructions are not correct,’” Shukla said. “We didn’t believe it, we said, ‘We give it out all the time to people.’”
But he was right. Thousands of employees, feeling hesitant to say anything, had been wasting time puzzling over the wrong instructions.
People on the spectrum also often have superior problem-solving and hyper-focusabilities, so they excel at finding signals in noisy data.

Sunday, July 2, 2017

Medicaid Cuts Would Hurt Disabled Kids in Kansas

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

At The Lawrence Journal-World, Peter Hancock reports on the potential impact of Medicaid cuts on Kansas, using the case study of a disabled child named Franklin Fergus.
Statewide, public schools in Kansas receive more than $46 million a year in Medicaid funds to provide those kinds of services to children in a school setting. The Lawrence school district alone receives more than $700,000 in Medicaid reimbursements.
Under standard Medicaid rules, children with severe disabilities like Franklin’s are entitled to receive medical care in an institutional setting such as a nursing home or state hospital.
However, Kansas and most other states operate programs known as “Home and Community Based Services” that allow a limited number of people to avoid institutions and remain in their homes by using Medicaid money to pay for non-medical services, such as the care Franklin receives at home from Govier, and the different kinds of therapy he receives at school.
Jane Fergus said that in his first year of life, the cost of Franklin's care exceeded $3 million. To this day, he requires ongoing medical care, including monthly visits to a children's hospital in Cincinnati where he undergoes an experimental form of chemotherapy — treatment that the Fergus family could never afford on their own.
Jane Fergus' husband, Fred Fergus, works as a teacher at West Middle School in Lawrence. But Jane does only occasional, part-time house cleaning work while spending virtually all of her available time helping to care for Franklin.
What concerns her most about the current health care debate, she said, is that those programs, known as HCBS waivers, are optional services under Medicaid, and thus they could be the first to be cut or eliminated if there are major cuts to Medicaid, which both the House and Senate health care plans propose to do.
Special education services, on the other hand, are not optional. Public schools in the United States are required to provide those services to students in their districts under a separate law, the Individuals with Disabilities in Education Act, or IDEA.
“They’re either going to cut (Medicaid) services or they’re going to cut enrollees,” Fergus said. “They’re going to have to cut something to make it work. All of that’s going to fall back on the states to cover that shortage.”

The Anti-Vax Movement and the Nation of Islam

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

Previous posts have noted RFK, Jr';s antivax partnership with Farrakhan's Nation of Islam.

In the summer of 2015, Kennedy enlisted the help of the Nation of Islam, a black separatist organization, in his years-long campaign to convince Americans that vaccines cause autism. According to several reports, Kennedy wanted to encourage black families to consider not vaccinating their children, based on a debunked claim that a mercury-based preservative in vaccines causes autism. At the time, Kennedy was trying to stop SB 277, a California bill which eliminated a personal-belief exemption that some parents had used to avoid vaccinating their kids. In April, in promoting an anti-vaccine movie called Trace Amounts, Kennedy referred to vaccine injuries as “a holocaust.”
 ...
[The] Nation of Islam has been anti-vaccine for decades, a skepticism that’s part of a broader distrust of the medical establishment. In the 1960s, according to Farrakhan, the NOI’s most influential leader Elijah Muhammad told his followers not to get the polio vaccine, but said others were acceptable. In 2004, a story in their official newspaper, the Final Call, suggested that vaccines could be linked to health problems from autism to diabetes. By 2013, Farrakhan was claiming children in Zimbabwe were being intentionally poisoned with vaccines from Europe and the U.S., “to limit the population of Black people in those countries and places in the world where America’s needs for their vital minerals and resources were deemed necessary.” (The idea that medicines are part of an effort to poison black people has a lot of traction in the NOI: In his 1965 book A Message to the Blackman in America, Elijah Muhammad said birth control was also a depopulation scheme and a “death plan.”)
The infamous conspiracy site InfoWars has also promoted the bogus theory that vaccines cause autism.