House Passes EMPOWER Care Act

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

A June 19 release from Rep. Debbie Dingell (D-MI): 

The House of Representatives passed bipartisan legislation by Congresswoman Debbie Dingell (D-MI) that makes it easier for seniors and the disabled to receive care in their preferred setting without facing bankruptcy or significant financial hardship. Congressmen Fred Upton (R-MI) and Brett Guthrie (R-KY) let similar bills with Dingell to strengthen long-term care and aging policies.

The Empowering Beneficiaries, Ensuring Access and Strengthening Accountability Act of 2019 extends critical programs within Medicaid for 4.5 years including the Money Follows the Person (MFP) demonstration program and extends spousal impoverishment protections for beneficiaries receiving long-term care in a home or community care setting. The MFP program allows certain Medicaid users, such as seniors and individuals with disabilities, to transition from a nursing home or institutional care back to their home. Since the MFP program was created over a decade ago, it has successfully helped over 88,000 individuals receive care in their own homes. The MFP program does not require people to leave institutional care; rather, it allows individuals who choose to go home to do so. Spousal impoverishment financial protections erase the institutional bias that has led seniors to choose more costly nursing homes over impoverishment.

"This nation’s long-term care system is broken. I understand the challenges better than many. Seniors, families, and caregivers are often desperate, stressed, and don’t know where to turn,” Dingell said. "This strong, bipartisan, and long-term extensions of the Money Follows the Person program and spousal impoverishment protections will create better outcomes for people receiving long-term care in the home or in the community. We will never stop pushing for long-term care and aging policies that allow seniors to age with dignity in the setting best for them.”

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“The Arc of the United States congratulates the strong group of bipartisan co-sponsors, on the passage of the Empowering Beneficiaries, Ensuring Access, and Strengthening Accountability Act of 2019 (H.R. 3253). This bill includes funding for the Money Follows the Person Program for 4.5 years. These funds will ensure that people with disabilities can leave institutions and return back home to their communities. This program has strong data that shows better quality of life for beneficiaries and cost-savings for Medicaid, a win/win. We thank Representative Dingell for her continued leadership on ensuring more opportunities for people with disabilities and aging Americans to have home and community-based long-term services and supports,” said Nicole Jorwic, Senior Director of Public Policy, The Arc of the United States.

Processed Foods

In The Politics of Autism, I discuss various ideas about what causes the condition. Here is just a partial list of correlates, risk factors, and possible causes that have been the subject of serious studies:

• Pesticides;
• Air pollution and proximity to freeways;
• Maternal thyroid issues;
• Autoimmune disorders;
• Induced labor;
• Preterm birth;
• Fever;  
• Birth by cesarean section;
• Anesthesia during cesarean sections;
• Maternal and paternal obesity;
• Maternal diabetes;
• Maternal and paternal age;
• Maternal post-traumatic stress disorder;
• Smoking during pregnancy;
• Antidepressant use during pregnancy;
• Polycystic ovary syndrome.
• Infant opioid withdrawal
• Zinc deficiency

From the University of Central Florida:

With the number of children diagnosed with autism on the rise, the need to find what causes the disorder becomes more urgent every day. UCF researchers are now a step closer to showing the link between the food pregnant women consume and the effects on a fetus' developing brain.

Drs. Saleh Naser, Latifa Abdelli and UCF undergraduate research assistant Aseela Samsam have identified the molecular changes that happen when neuro stem cells are exposed to high levels of an acid commonly found in processed foods. In a study published June 19 in Scientific Reports, a Nature journal, the UCF scientists discovered how high levels of Propionic Acid (PPA), used to increase the shelf life of packaged foods and inhibit mold in commercially processed cheese and bread, reduce the development of neurons in fetal brains.

Dr. Naser, who specializes in gastroenterology research at the College of Medicine's Burnett School of Biomedical Sciences, began the study after reports showed that autistic children often suffer from gastric issues such as irritable bowel syndrome. He wondered about a possible link between the gut and the brain and began examining how the microbiome -- or gut bacteria -- differed between people with autism and those who do not have the condition.

"Studies have shown a higher level of PPA in stool samples from children with autism and the gut microbiome in autistic children is different," Dr. Naser said. "I wanted to know what the underlying cause was."

In the lab, the scientists found exposing neural stem cells to excessive PPA damages brain cells in several ways. First, the acid disrupts the natural balance between brain cells by reducing the number of neurons and over-producing glial cells. While glial cells help develop and protect neuron function, too many glia cells disturb connectivity between neurons. They also cause inflammation, which has been noted in the brains of autistic children.

Excessive amounts of the acid also shorten and damage pathways that neurons use to communicate with the rest of the body. The combination of reduced neurons and damaged pathways impede the brain's ability to communicate, resulting in behaviors that are often found in children with autism, including repetitive behavior, mobility issues and inability to interact with others.

Previous studies have proposed links between autism and environmental and genetic factors, but Drs. Naser and Abdelli say their study is the first to discover the molecular link between elevated levels of PPA, proliferation of glial cells, disturbed neural circuitry and autism. The 18-month study was self-funded by UCF.

PPA occurs naturally in the gut and a mother's microbiome changes during pregnancy and can cause increases in the acid. But Drs. Naser and Abdelli said eating packaged foods containing the acid can further increase PPA in the woman's gut, which then crosses to the fetus.

More research needs to be done before drawing clinical conclusions. Next, the research team will attempt to validate its findings in mice models by seeing if a high PPA maternal diet causes autism in mice genetically predisposed to the condition. There is no cure for autism, which affects about 1 in 59 children, but the scientists hope their findings will advance studies for ways to prevent the disorder.

"This research is only the first step towards better understanding of Autism Spectrum Disorder," the UCF scientists concluded. "But we have confidence we are on the right track to finally uncovering autism etiology."

1077 Measles Cases in 2019 So Far

In The Politics of Autism, I look at the discredited notion that vaccines cause autism.  Twitter, Facebook, and other social media platforms have helped spread this dangerous myth.

From CDC: "From January 1 to June 20, 2019, 1,077** individual cases of measles have been confirmed in 28 states. This is an increase of 33 cases from the previous week. This is the greatest number of cases reported in the U.S. since 1992 and since measles was declared eliminated in 2000."

 Pam Belluck and Reed Abelson at NYT:

There were about two claims of injury for every one million doses of all vaccines distributed in the United States from 2006 through 2017, the period for which the injury compensation program has dosage data. It says more than 3.4 billion vaccine doses were distributed during that time.

The rarity of claims is especially notable because the program aims to make it easy to file a petition. It frequently pays claimants’ fees for lawyers and expert witnesses, whether the claim is compensated or not, said Dr. Narayan Nair, who oversees the program as director of the Department of Health and Human Services’s division of injury compensation programs.
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One condition that is not on the list of potential vaccine-related effects is autism. In the early 2000s, after a now-debunked study attempted to link autism to vaccines, the program received several thousand claims. The matter was exhaustively evaluated for several years by federal courts, which ultimately ruled that evidence showed autism is not caused by vaccines and is not a legitimate claim for the injury program. Autism-related claims were dismissed.
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A growing proportion of recent claims, about half of all petitions since 2017, do not involve the content of vaccines themselves. Instead, they refer to shoulder injuries, usually in adults, that occurred because a health provider injected a vaccine too high on the shoulder, or into the joint space instead of into muscle tissue. That may cause an inflammatory response leading to shoulder pain and limited motion.

People with Disabilities in Areas of Armed Conflict

In The Politics of Autism, I discuss international perspectives.

From the United Nations:

Acting unanimously today, the Security Council adopted its first-ever resolution calling upon Member States and parties to armed conflict to protect persons with disabilities in conflict situations and to ensure they have access to justice, basic services and unimpeded humanitarian assistance.

By the terms of resolution 2475 (2019), the 15-member Council called upon all parties to armed conflict to allow and facilitate safe, timely and unimpeded humanitarian access to all people in need of assistance. It further urged them to prevent violence and abuses against civilians in situations of armed conflict, including those involving in killing and maiming, abduction and torture, as well as rape and other forms of sexual violence in conflict and post-conflict situations.

The Council emphasized the need for States to end impunity for criminal acts against civilians, including those with disabilities, and to ensure they have access to justice and effective remedies, and as appropriate, reparation. It called upon all parties to armed conflict to allow and facilitate safe, timely and unimpeded humanitarian access.

Encouraging Member States to ensure that persons with disabilities enjoy equal access to basic services, including education, health care, transportation and information and communications technology (ICT) and systems, the Council further urged States to enable the meaningful participation and representation of persons with disabilities, including their representative organizations, in humanitarian action and in conflict prevention, resolution, reconciliation, reconstruction and peacebuilding.

Further by the resolution, the Council urged Member States to take steps to eliminate discrimination and marginalization on the basis of disability in situations of armed conflict. It also urged States parties to comply with their obligations under the 2006 Convention on the Rights of Persons with Disabilities.

Underreporting of Restraint and Seclusion

In The Politics of Autism, I discuss the use of restraint and seclusion.  Many posts have mentioned these techniques, both in schools and facilities for people with disabilities.

The Government Accountability Office has a new report titled "Education Should Take Immediate Action to Address Inaccuracies in Federal Restraint and Seclusion Data."  Highlights:

GAOs' review found that data the Department of Education (Education) uses in its enforcement of civil rights laws does not accurately or completely reflect all incidents of restraint and seclusion of public school students. Education has stated that restraint and seclusion should only be used when a child's behavior poses imminent danger of serious physical harm to self or others. GAO's review of the most recent Civil Rights Data Collection (CRDC), school year 2015-16, found that 70 percent of the more than 17,000 school districts in the U.S. reported zero incidents of restraint and zero incidents of seclusion. However, GAO's analysis and documents from Education showed substantial evidence that nine of the 30 largest districts (those with more than 100,000 students) inaccurately reported zeros when they actually had incidents or did not have the data. Moreover, Education officials have said very large districts are likely to have incidents of restraint and seclusion. For example, Fairfax County Public Schools in Virginia, which has about 186,000 students, reported zero incidents in school year 2015-16 but recently acknowledged that it had over 1,600 incidents of restraint or seclusion in school year 2017-18.

Documents from Education also showed that several of the very largest school districts reporting zero incidents were instead not collecting data on restraint and seclusion for the CRDC at all, contrary to Education's guidance and policy. While Education requires districts to provide plans for collecting data that are missing or incomplete, GAO found that several of the largest districts reporting zero either did not provide plans or provided incomplete plans. These districts were able to bypass the CRDC system requirement to submit plans because they reported zero incidents instead of leaving the fields blank to indicate the data were missing. Education created a tip sheet to instruct districts on when to report zeros and how to report that data are not available, but the tip sheet is difficult to find on the CRDC website and not available on the screen where districts submit data. Further, Education has not corrected the data for the nine largest districts that inaccurately reported zero restraints and seclusions.

While it is difficult to know the full extent of underreporting, the problems that GAO found with the largest districts reporting zero incidents when in fact the data were missing raise questions as to whether other school districts correctly reported zero incidents of restraint and seclusion. GAO found documents from Education that indicated other, smaller districts also might have misreported zeroes.

Education describes its civil rights data as a key part of its enforcement strategy to protect students from discrimination and ensure equal access to education. Without adequate systems in place to ensure the accurate, complete reporting of restraint and seclusion data, districts may continue to erroneously report zero incidents and Education may be hindered in its enforcement of civil rights laws.

Antivax Funders

In The Politics of Autism, I look at the discredited notion that vaccines cause autism.  Twitter, Facebook, and other social media platforms have helped spread this dangerous myth.

 Lena H. Sun and Amy Brittain at WP report that a wealthy couple in Manhattan has given more than $3 million to antivaccine groups. They helped finance the infamous "documentary" titled Vaxxed.

Hedge fund manager and philanthropist Bernard Selz and his wife, Lisa, have long donated to organizations focused on the arts, culture, education and the environment. But seven years ago, their private foundation embraced a very different cause: groups that question the safety and effectiveness of vaccines.

How the Selzes came to support anti-vaccine ideas is unknown, but their financial impact has been enormous. Their money has gone to a handful of determined individuals who have played an outsize role in spreading doubt and misinformation about vaccines and the diseases they prevent. The groups’ false claims linking vaccines to autism and other ailments, while downplaying the risks of measles, have led growing numbers of parents to shun the shots. As a result, health officials have said, the potentially deadly disease has surged to at least 1,044 cases this year, the highest number in nearly three decades.

The Selz Foundation provides roughly three-fourths of the funding for the Informed Consent Action Network, a three-year-old charity that describes its mission as promoting drug and vaccine safety and parental choice in vaccine decisions.

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Tax filings for the couple’s charitable foundation show they began supporting the movement in 2012, when they gave $200,000 to a legal fund for Andrew Wakefield, one of the most important anti-vaccine activists.

Chlorine Dioxide

 In The Politics of Autism, I discuss autism quackery.  One particularly dangerous"cure" involves bleach.

Brandy Zadrozny at NBC:

The chlorine dioxide Laurel Austin gives to her sons is made by mixing a sodium chlorite solution with an acid activator — both of which are available online for about $20. The solution was first promoted almost two decades ago by a former Scientologist, Jim Humble, as the “Miracle Mineral Solution,” or MMS for short, and sold as a cure for AIDS, cancer and almost every other disease known to humanity.

Doctors say chlorine dioxide’s only effects are harmful, warning that it can damage tissues in the digestive system, disrupt the functioning of red blood cells and lead to kidney failure.

Kerri Rivera, a former Chicago real estate agent who is not a doctor, latched onto the so-called cure and began suggesting it to parents of autistic children around 2012, writing a book and appearing at seminars and on popular conspiracy theorists’ YouTube channels at a time when autism diagnoses were skyrocketing. Rivera declined to comment.

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 Over the last five years, poison control centers have managed 16,521 cases nationwide dealing with chlorine dioxide, according to data provided by the American Association of Poison Control Centers. At least 50 of the cases were considered life-threatening, and eight people died. It’s not clear how many of the cases involved people with autism.

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Laurel Austin showed the police online articles about chlorine dioxide, including one from the Autism Research Institute, one of the first and most vocal organizations to push the discredited theory that vaccines cause autism. That 2015 article claimed the solution had the potential to heal, but ultimately advised against its use, according to investigation notes. “This legitimizes the claim by Laurel of her use of MMS CLO2 as a holistic treatment approach,” the officer wrote. Laurel Austin followed up with the officer by sending a link to a YouTube video of Rivera explaining the chlorine dioxide protocol.