Medicaid Reimbursement in Mississippi

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

In Tupelo, MS, Michaela Gibson Morris at The Daily Journal:

“We think there are 11,000 people with autism in Mississippi,” said Jim Moore, director of autism solutions at Canopy Children’s Solutions in Jackson and the chairman of the Mississippi Autism Board. “We have less than 60 providers.”

The research has shown that applied behavior analysis-based therapy can radically change the trajectory for a child with autism, Moore said. Especially if children with autism can receive intensive therapy early, they will need much less support in special education services in public schools and in social services as adults, saving the state money in the long run.

“The Centers for Disease Control and the American Medical Association not only consider it the best practice, but the gold standard,” Moore said.

The Medicaid reimbursement, which runs just over $30 an hour, doesn’t stretch to cover the costs, Moore said. States with similar demographics to Mississippi have Medicaid rates that are nearly double that level. As a result, there are currently only five autism centers accepting Mississippi Medicaid – the centers in Tupelo and West Point, Canopy in Jackson and two on the Gulf Coast.

“It’s extraordinarily hard not only to give that best treatment but keep the lights on,” Moore said.

Mississippi ranks dead last in community living standards for Americans with intellectual and developmental disabilities 

EMPOWER Care Act Advances

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

A Friday release from Rep. Brett Guthrie (R-KY):

Today the House Energy and Commerce Committee’s Health Subcommittee approved Congressman Brett Guthrie’s (KY-02) and Congresswoman Debbie Dingell’s (MI-12) Ensuring Medicaid Provides Opportunities for Widespread Equity, Resources (EMPOWER) and Care Act (H.R. 5306), which will help certain Medicaid participants receive long-term care in their homes or communities if they voluntarily choose to receive in-home care.

The EMPOWER Care Act reauthorizes the federal Money Follows the Person (MFP) demonstration program for one year. This program allows certain Medicaid users, such as seniors and individuals with disabilities, 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.

“There’s a reason we named our bill the EMPOWER Care Act – because we want to empower individuals with disabilities and seniors to choose the care that works best for them,” said Guthrie. “Kentucky Transitions, which administers the MFP program in the Commonwealth, has allowed hundreds of Kentuckians in nursing homes and other institutions to choose to go back to their own homes for care, and other states have had similar success. This program is a cost-effective way for people to receive the care that is best for them where they want to be. I was proud to introduce this bill with Congresswoman Dingell and I urge the full committee to approve this bill as soon as possible.”

“Our long-term care system is completely broken. Unfortunately I am witnessing its problems firsthand and am meeting people in crisis almost daily,” said Dingell. “The Money Follows the Person program has demonstrated it works, has strong bipartisan support, and saves taxpayers money by successfully transitioning thousands of people from institutions to a community setting where they can be with their loved ones. This is why I’m proud to author the EMPOWER Care Act with my friend and colleague Congressman Brett Guthrie to reauthorize the program. Advancing this bill through the Health Subcommittee is a critical step to getting it signed into law this year, and I’m looking forward to working with my colleagues on the Energy and Commerce Committee to ensure we get this done.”

Now that the Health Subcommittee has approved the EMPOWER Care Act, it must be marked up by the full Energy and Commerce Committee before heading to the House floor for a vote.

Trump Using the R-Word

In The Politics of Autism, I discuss the issue's role in campaign politics.   In the 2016 campaign,   number of posts discussed Trump's bad record on disability issues more generally.   As his actions as president indicate, he has little use for Americans with disabilities.  

The already discredited Woodward book, so many lies and phony sources, has me calling Jeff Sessions “mentally retarded” and “a dumb southerner.” I said NEITHER, never used those terms on anyone, including Jeff, and being a southerner is a GREAT thing. He made this up to divide!

— Donald J. Trump (@realDonaldTrump) September 5, 2018

Trump is lying when he says that he never used the r-word. 

TRUMP to HOWARD STERN in September 2004:

"I have a golf pro who's mentally retard ― I mean he's like really not a smart guy." pic.twitter.com/qBQOq2rCQq

— JM Rieger (@RiegerReport) September 5, 2018

TRUMP to HOWARD STERN in April 2004:

"I was criticized in one magazine, where the writer was retarded and said, 'Donald Trump put up seven million dollars, they put up 193 million dollars and they're 50/50 partners. Why isn't Donald Trump putting up more money?'" pic.twitter.com/Oyd0xOxUxT

— JM Rieger (@RiegerReport) September 5, 2018

From a biography of Sacha Baron Cohen:

 Donald Trump also stopped his interview after Ali G pitched him an idea of manufacturing a glove to be worn while eating ice-cream cones. "I thought he was seriously retarded," Trump says. "It was a total con job.

Data on Developmental Disabilities Around the World

Uncertainty is a major theme of The Politics of Autism.  How common is autism?  Do rates vary around the world?  Has prevalence changed over time.  There are now efforts to address such questions.

The Lancet has an article titled "Developmental disabilities among children younger than

5 years in 195 countries and territories, 1990–2016: a systematic analysis for the Global Burden of Disease Study 2016.  The summary:

Background

The Sustainable Development Goals (SDGs) mandate systematic monitoring of the health and wellbeing of all children to achieve optimal early childhood development. However, global epidemiological data on children with developmental disabilities are scarce. The Global Burden of Diseases, Injuries, and Risk Factors Study 2016 provides a comprehensive assessment of prevalence and years lived with disability (YLDs) for development disabilities among children younger than 5 years in 195 countries and territories from 1990 to 2016. Methods We estimated prevalence and YLDs for epilepsy, intellectual disability, hearing loss, vision loss, autism spectrum disorder, and attention deficit hyperactivity disorder. YLDs were estimated as the product of the prevalence estimate and the disability weight for each mutually exclusive disorder, corrected for comorbidity. We used DisMod-MR 2.1, a Bayesian meta-regression tool, on a pool of primary data derived from systematic reviews of the literature, health surveys, hospital and claims databases, cohort studies, and disease-specific registries.

Findings

Globally, 52·9 million (95% uncertainty interval [UI] 48·7–57·3; or 8·4% [7·7–9·1]) children younger than 5 years (54% males) had developmental disabilities in 2016 compared with 53·0 million (49·0–57·1; or 8·9% [8·2–9·5]) in 1990. About 95% of these children lived in low-income and middle-income countries. YLDs among these children increased from 3·8 million (95% UI 2·8–4·9) in 1990 to 3·9 million (2·9–5·2) in 2016. These disabilities accounted for 13·3% of the 29·3 million YLDs for all health conditions among children younger than 5 years in 2016. Vision loss was the most prevalent disability, followed by hearing loss, intellectual disability, and autism spectrum disorder. However, intellectual disability was the largest contributor to YLDs in both 1990 and 2016. Although the prevalence of developmental disabilities among children younger than 5 years decreased in all countries (except for North America) between 1990 and 2016, the number of children with developmental disabilities increased significantly in sub-Saharan Africa (71·3%) and in North Africa and the Middle East (7·6%). South Asia had the highest prevalence of children with developmental disabilities in 2016 and North America had the lowest.

Interpretation

The global burden of developmental disabilities has not significantly improved since 1990, suggesting inadequate global attention on the developmental potential of children who survived childhood as a result of child survival programmes, particularly in sub-Saharan Africa and south Asia. The SDGs provide a framework for policy and action to address the needs of children with or at risk of developmental disabilities, particularly in resource-poor countries

Unvaccinated Clusters Persist Despite CA Vax Law

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

Laura Santhanam at PBS NewsHour:

A California law that aims to limit the number of people who can refuse vaccines has led to a slight improvement in kindergartners’ vaccination rate in recent years, according to a new study in Health Affairs. But the law was not as effective in private schools, and did little to break up localized clusters of children who opted out of vaccines.

It’s these local clusters of vaccinations that put a specific community or school at the greatest risk, according to the study, which linked large measles outbreaks across the United States to “declining population vaccination and to voluntary abstention from measles vaccine.”

“All disease transmission is local, just like politics,” said Saad Omer, a professor in global health and epidemiology at Emory University in Atlanta and one of the study authors. He added that national and state monitoring is not enough to effectively monitor infectious disease; more needs to be done on the local and county level.

...
In a now-retracted 1998 study published in the journal the Lancet, Dr. Andrew Wakefield claimed a false link between autism and the vaccine for measles, mumps and rubella. This study has been widely and repeatedly debunked. But some people continue to point to it as justification for avoiding immunization.

At Health Affairs, Malia Jones and colleagues have an article titled "Mandatory Health Care Provider Counseling For Parents Led To A Decline In Vaccine Exemptions In California." The abstract:

Receipt of childhood vaccinations in the US has been declining, and outbreaks of preventable infectious diseases have become more common. In response, in 2014 California implemented a policy change for exemptions from mandatory vaccines for school enrollment. Data on fifteen successive cohorts of kindergarteners enrolled in public and private schools between school years 2001–02 and 2015–16 were analyzed for changes in vaccination trends. The results show an increase in the prevalence and clustering of vaccine exemptions from 2001–02 through 2013–14, followed by a modest decline after implementation of a policy mandating health care provider counseling for vaccine exemption. Clustering of vaccine exemptions increased over the study period and was less responsive to the policy change than were exemption rates overall. Nor did the policy change uniformly reduce the clustering of at-risk students across counties. Trends in the use of conditional admission showed strong school-level clustering and remained relatively stable. The policy change was effective at reducing exemption rates but did not uniformly reduce clustering of exemptions. The results suggest the need to evaluate the causes of local-area clustering and to adopt a statewide policy that addresses clustering of vaccine exemptions within schools and counties.

Opposition to Kavanaugh

In The Politics of Autism, I write about relevant court cases. 

More than 100 disability organizations have come out against the SCOTUS nomination of Judge Kavanaugh.

Senator Tammy Duckworth (D-IL) at Time:

Judge Kavanaugh has shown us what he believes about disabled Americans. In Tarlow v. D.C., he ruled that those with mental disabilities shouldn’t have the right to make medical decisions about their own bodies. In Baloch v. Kempthorne, he declared that businesses’ profits are more important than our health. And in Johnson v. Interstate Management Company, he decided that it’s okay for employers to discriminate against us, too.

ASAN has more detail:

Judge Kavanaugh has ruled that people with intellectual and/or developmental disabilities do not have any right to a say in our own health care. In Doe ex rel. Tarlow v. D.C., Judge Kavanaugh ruled against two women who had been forced to have abortions and one woman who was forced to have eye surgery. The D.C. agency that serves people with developmental disabilities had consented to all three procedures without discussing them with the women. Judge Kavanaugh wrote that because the women lacked “capacity” to make their own medical decisions independently, they had no right even to be consulted. This decision dramatically delayed the women’s ability to obtain compensation for the harm they suffered.

The United States has a long history of eugenic policies that hurt people with disabilities. People with disabilities, especially people with intellectual and developmental disabilities, have been forced to have sterilizations and abortions, and our children have been taken away from us. These policies often are based on the assumption that people with disabilities should not have a say in our own health care. Judge Kavanaugh’s decision in Doe is an echo of these devastating policies, and his nomination threatens our right to parent, make our own reproductive and other health care decisions, and control our own lives and bodies.

Trump and the R-Word

 In The Politics of Autism, I discuss the issue's role in campaign politics.   In the 2016 campaign, a number of posts discussed Trump's bad record on disability issues more generally.   As his actions as president indicate, he has little use for Americans with disabilities.

The already discredited Woodward book, so many lies and phony sources, has me calling Jeff Sessions “mentally retarded” and “a dumb southerner.” I said NEITHER, never used those terms on anyone, including Jeff, and being a southerner is a GREAT thing. He made this up to divide!

— Donald J. Trump (@realDonaldTrump) September 5, 2018

David Choi at Business Insider:

But audio recordings of previous interviews contradict Trump's claim that he never called anyone "mentally retarded." In an interview with shock jock Howard Stern from 2004, Trump claimed to recall a conversation with his golf instructor:

"I have a golf pro who's mentally retarded," Trump said, according to the Huffington Post. "I mean he's really not a smart guy."

In another interview with Stern in 2004, Trump decried a "negative" news report that scrutinized his financial dealings and threatened to "sue their ass off."

"I was criticized in one magazine, where the writer was retarded," Trump said at the time. "He said 'Donald Trump put up $7 million ... why isn't Donald Trump putting up more money?"

In 2016, the Daily Beast also reported that Trump implied actress Marlee Matlin, a former contestant on his show "The Celebrity Apprentice," was mentally handicapped because she was deaf.

One source told The Beast that Trump, who wrote "asinine" notes during tapings of the show, once wrote: "Marlee, is she retarded??"

"[Trump] would make fun of her voice," a person who worked on the show's set said to The Beast. "Like, to make it seem like she was mentally not there? [It] sounded like he got a real kick out of it. It was really upsetting."

Autism and Personal Experience

In The Politics of Autism, I discuss the attitudes of public officials.  Many who get involved in autism politics have had experience as parents or caregivers.

Antonio Planas at Newsday: 

An Islip councilman charged with reviving an advisory board for the disabled hopes to lean on his life experiences raising his autistic son to bring change.

"It's an area that I know a lot about and something I would like to share my knowledge, my abilities and my enthusiasm to try and do something positive," said James O'Connor, chairman of the Town of Islip Americans with Disabilities Advisory Board.

O'Connor, whose 22-year-old son was diagnosed with autism at age 2, was named as the advisory board's chairman on Aug. 21 by Supervisor Angie Carpenter. The councilman spoke recently from his town hall office, which proudly displays his son Matthew's artwork.

"The supervisor of the board, when I was first elected, understood I had a child with a disability," said O'Connor, who began his first term in January. "She asked me if I would be willing to take on the assignment. ... We can serve as a vigilant reminder to the town that there is a disabled community here in the town of Islip and we need to take their 

Postmodernism and the Antivax Movement

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

Brett Bricker and Jacob Justice have an article at Western Journal of Communication titled "The Postmodern Medical Paradigm: A Case Study of Anti-MMR Vaccine Arguments."

This essay analyzes the arguments of the antivaccination movement, arguing that many analysts have misdiagnosed the root causes of vaccine skepticism. It is no longer productive for argumentation scholars to discount scientific skepticism as simply a problem of an ignorant public, religious zealots, or conservative ideologies, because antivaccine beliefs transcend ideology. The authors argue that simplistic accusations of blame on one political or cultural subgroup are inaccurate, and that the emergence of powerful antivaccine advocates points to the power of a conspiracy theory supported by anecdotes.

From the article:

The appeal of antivaccination discourse in its most powerful form is linked to two aspects of the postmodern medical paradigm. First, antivaccination advocates counter appeals to scientific consensus by relying upon anecdotes and highly emotional personal stories. These anecdotes typically involve the firsthand testimony of parents of autistic children who are convinced of the vaccination–autism link and use their own experiences to caution the audience against vaccination. Although educated and scientifically literate audiences may rightfully be skeptical of such anecdotal appeals, lay audiences often find them persuasive because of the sincerity of the featured parents and their seemingly common-sense arguments. Second, antivaccination arguments utilize conspiracy theory rhetoric to discount provaccination counterarguments, alleging a concerted effort by the media, government agencies, and pharmaceutical industry to conceal the truth about the vaccination–autism link. This argumentative technique casts doubt on the scientific consensus, by implying that the vaccination–autism link could be definitively proven were it not for widespread collusion to stifle the flow of information, creating an atmosphere of pervasive skepticism and uncertainty that is not conducive to rational, evidence-based persuasion. In what follows, we describe these two themes in greater detail and, illustrate their form and function within antivaccination discourse.

...
The postmodern medical paradigm is at least partially to blame for skepticism of the scientific evidence supporting MMR vaccine efficacy and safety. Although postmodernism is an intentionally slippery term, when applied to medicine the postmodern medical paradigm has three characteristics:

1. Hostility toward singular truths
2. Aversion to scientific objectivity
3. Decreased trust in expertise

Looking for Rain Man

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

Simon M. Bury and colleagues have a letter in Autism titled  "If you’ve employed one person with

autism …: An individual difference approach to the autism advantage at work."  The abstract:

In this letter to the editor, we comment on the ‘autism advantage’ – the idea that superior skills associated with autism (e.g. attention to detail) present a talent in employment – an example of which is a recent discussion by Austin and Pisano. We welcome advocacy that raises awareness around the strengths and capabilities of people with autism, and also the need to reform human resource management processes that disadvantage them. However, we are concerned that, by highlighting certain stereotypes (e.g. the ‘talented nerd lacking social graces’), the heterogeneity of autism may be overlooked and support needs downplayed. Furthermore, not appreciating individual differences might result in a misalignment between work-profile and employment, pressure to outperform peers without autism and a failure to appreciate the diverse interests of people with autism. We argue that an individual differences approach will prove more sustainable for improving long-term employment outcomes.

From the letter:

We acknowledge that there are areas in which individuals with autism perform exceptionally and appreciate the importance of identifying their strengths and supporting them appropriately. However, it is also important to remind ourselves that not all  ndividuals with autism have superior skills, nor should they have to, to secure employment. The ‘autism advantage’ may prove a double-edged sword; while, it is beneficial in raising awareness, it also has the potential to place unreasonable expectations on average John (or Jane for that matter!). Supporting John, and the individuals who make up his composite, by supporting his uniqueness, including both his strengths and support needs, may prove to be the most sustainable approach to employment in the long term

Antivax and Mistrust of Experts

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

At the 2018 APSA annual meeting, Naomi Scheinerman has a paper titled "Anti-Vaccination in the Trump Era: Mistrust of Experts and the Promise of Democracy."  The abstract:

The case of vaccination policy offers us a perspective of democratic ills that were previously characterized as stemming from epistemic droughts as a problem of science communication, the solution to which is increased democratic deliberation that aligns personal interest with community welfare while instilling greater trust in expert authority.

Today’s political moment is often diagnosed as the spread of disparate information, that our democracy’s ills stem from the condition of two groups of people who consume two divergent diets of facts. Perhaps even more pernicious is the growing sentiment that due to this confluence of seemingly contradictory information that the truth is unknowable. However, closer examination reveals that some ordinarily divisive topics are not so clearly a case of clashing knowledge, but rather a breakdown of communication and interpretation regarding that information. Indeed, the case of vaccination shows that individuals align themselves with groups based on a valued risk assessment and social coherence rather than scientific ineptitude. Better understanding the science of communication can bolster democratic efforts to counteract the rhetoric of “alternative facts” and interpretation of risk that threaten the scientific foundations of good social policy.

Early in 2017, two polarized political camps unearthed common ground when President-elect Donald Trump requested that Robert F. Kennedy Jr. head a commission on vaccine safety and “scientific integrity.” The concurrence of the liberal anti-vaccination movement and the conservative Trump base revealed that no aspect of the political life is immune from the Romantic Era’s successor, what Jean-François Lyotard dubbed the “postmodern condition”: distrust of expert authority in deference to grand narratives cultivated through personal experiences. Whereas the anti-vaccination movement has fought for personal freedoms through attaining “philosophical” (non-medical and non-religious) exemptions from vaccination mandates, the Trump strategy has been to overhaul or even eliminate the regulatory agencies whose legitimacy is based on expertise. Vaccination skepticism emerges in part due to science communication failings and the perennial human need to find meaning in group membership and validation. Anti-vaccination group membership demands both an epistemic alignment with certain facts as well as a moral evaluation of acceptable levels of risk: even as many anti-vaxxers acknowledge the health benefits of vaccines, they perceive the risk of autism and injury to outweigh them.

Perhaps the great irony of democracy as seen through the history of science is that the liberal ideals of freedom of expression, freedom to believe otherwise, and freedom to dispute the status quo, have heralded both benefits to and detrimental attacks on democratic and medical institutions. Further, philosophies of science both advance the imperative of scientific neutrality alongside the need for epistemic communities to inform medical practitioners of their lived and subjective accountings that come from a robust social epistemology. Consider that much of scientific progress comes from recognizing the fallibility of even the most widely held of views. Progress can be both born and killed in moments of skepticism.

Ultimately, progress also requires democratic trust through robust institutions that recognize dissenting views formed from personal accounting alongside an ability to effectively communicate science and educate. Today’s political moment features a JSMillian political tension between desiring epistemic guidance of experts alongside experiential contribution of the average individual whose skepticism may provoke debate and progress. Deliberative politics must embrace this challenge of modulating the right amount of healthy debate. Mistrust of experts and government emerges from the feeling that one has been abandoned and lived experiences denied, and thus both society and the individual could benefit from renewal of the integrity and significance of democratic processes that re-inform epistemic identities in ways that are deeply meaningful and healthy.

Partisanship and Participation Among Disabled People

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

At the annual meeting of the American Political Science Association, Sierra Powell and April A. Johnson have a paper titled "Partisanship and Political Participation Among People with Disabilities."

The abstract:

Scholars have found that having a disability significantly decreases the likelihood one will vote. Here we explore several mechanisms that may be behind the low voter turnout of disabled Americans. Commensurate with the pattern of low turnout among people with disabilities, we ask whether people with disabilities also exhibit weak partisanship, moderate ideological preferences, and inconsistent patterns of vote choice. Analyzing data from the 2016 Cooperative Congressional Election Study and the 2012 and 2016 American National Election Studies, we conclude that having a disability is positively related to identifying as a Democrat, to identifying with liberal ideological orientations, and to Democratic vote choice. Curiously, we also find strong partisan attachments among people with physical disabilities, despite their history of low voting levels. We speculate about the differential effect of partisan attachment on voting behavior among those with and without disabilities. Practical strategies for greater incorporation of those with disabilities into the political process are considered.

A Case for State Law on Autism ID Cards

The Politics of Autism includes an extensive discussion of policy initiatives in the states. New York recently enacted ID legislation by Assemblyman Angelo Santabarbara. Speaking to Bethany Bump of the Albany Times-Union, he explains the need for state law:

[The] bill, sponsored by Santabarbara in the Assembly and Pamela Helming in the Senate, will create an optional, standardized identification card for individuals with a developmental disability. It could include information about the person's diagnosis, as well as an emergency contact number and address.

The goal, Santabarbara said, is to help vulnerable individuals convey important information to first responders in the event of an emergency or during an interaction with law enforcement.

He pointed to an incident in Arizona last year in which a police officer forcibly restrained an autistic 14-year-old who was playing with a piece of string in a public park, slammed him against a tree and pinned him to the ground, believing his repetitive behavior was a sign of drug use.

It wasn't. It was what's known in the autism community as self-stimulation or "stimming" — a common behavior involving repetitive movements or sounds that helps individuals with developmental disorders cope with their surroundings. The incident caused outrage after body camera footage was released.

"I said look, 'If we don't do something this is going to happen here and nobody wants that,'" Santabarbara said. "It would have been a different situation if, when the officer frisked the teen he found his ID card or had some training."

The ID bill, he said, will work in concert with an earlier bill he sponsored that created a statewide program to train police officers and first responders in recognizing the signs of autism, as well as how to respond to such individuals.

A number of local municipalities and organizations have offered unofficial versions of ID cards over the years, but they don't contain standardized language and may not be readily recognized by first responders, he said.