I have written a book on the politics of autism policy. Building on this research, this blog offers insights, analysis, and facts about recent events. If you have advice, tips, or comments, please get in touch with me at jpitney@cmc.edu
Researchers examined the educational status of a group of Medicaid-eligible children in Tennessee ages 3 to 8. Some of those children were born with neonatal abstinence syndrome, meaning that they spent their earliest days coping with the health effects of opioid withdrawal. The other children were not diagnosed with the syndrome.
David J. Totaro, Chairman of the Partnership for Medicaid Home-Based Care (PMHC), issued the following statement on the House Energy & Commerce Committee passage of H.R. 3891 and H.R. 5306, two bipartisan measures that would improve the Medicaid program by strengthening access to and the integrity of home and community-based services.
"The Money Follows the Person program was first authorized in the Deficit Reduction Act of 2005 with strong bipartisan support. Since that time, MFP has enabled an estimated 75,000 older adults and individuals with physical, intellectual, and developmental disabilities, to transition from institutional settings back to their homes and communities.
"Unfortunately, MFP's authorization expired over a year ago, and states have been operating through no-cost extensions. Eight states have already run out of MFP grant funds, and it is projected funds will run out for the remaining participants by the end of 2018. As a result, these states are already in the process of scaling back their programs and reducing dedicated staff and resources.
"As amended, the EMPOWER Care Act rectifies this situation by reauthorizing MFP through 2019. In addition, this important legislation improves the MFP program by reducing from 90 to 60 the number of days an individual must be in a nursing home before becoming eligible to transition to their homes or community settings. In addition, the EMPOWER Care Act enhances the reporting and accountability of MFP funding and requires HHS to conduct a best practices evaluation that will include the most effective strategies for transitioning beneficiaries from institutions to their homes or qualified community settings.
"As a result of its attributes, passage of the EMPOWER Care Act will strengthen access and reduce program costs by ensuring that individuals who could be helped by MFP to live in their homes and communities are not instead forced into an institution or to remain segregated in an institution.
"PMHC is also pleased to endorse H.R. 3891, which we believe will strengthen the Medicaid program's ability to protect those served by the program from abusive activity. We are particularly grateful for this legislation's expansion of scope for Medicaid Fraud Control Units (MFCUs) so they can better identify, investigate, and prosecute instances of patient abuse, or neglect.
"MFCUs play a vital role in securing the integrity, efficiency, and effectiveness of the Medicaid program. However, MFCUs are currently restricted in their efforts to investigate patient abuse and neglect complaints in certain settings. H.R. 3891 empowers MFCUs to undertake this activity across all settings.
"We believe H.R. 3891's introduction by Representatives Tim Walberg (R-MI) and Peter Welch (D-VT) will do much to strengthen the integrity of the Medicaid program. We also look forward to working with the Committee on additional reforms that PMHC has proposed to protect the individuals who depend on Medicaid services from fraud, abuse, and neglect.
"Thanks to these measures, Medicaid recipients may soon realize strengthened access to high-quality, low-cost, consumer-preferred home and community-based services. We are confident decision makers will achieve improved outcomes and significantly reduced program costs from their efforts, and we look forward to working with lawmakers as they continue their important work to strengthen individuals' access to high-quality, high-value home-based care."
PMHC is comprised of organizations representing home care agencies, associations, MCOs and other payers, and business affiliates who have come together to improve the quality and integrity of Medicaid funded home- and community-based services (HCBS). Recognizing the integral role of home- and community-based care in the Medicaid program, PMHC is dedicated to advancing and supporting public policies that strengthen the Medicaid program for recipients and taxpayers alike.
Over the past few months, I have been working on exposing and uncovering individuals that sell miracle cures. Individuals that attempt to sell products that “cure” or “treat” an illness in the United States are subject to regulations enforced by the Food and Drug Administration. A miracle cure used by parents to “cure” autism Miracle Mineral Solution (MMS) is not legal for sale for internal use in the United States. However, vendors use Amazon to sell Miracle Mineral Solution, and we must report this to the FDA.
... Amazon knows customers are buying this product and making MMS based on their product recommendations to consumers. By allowing their platform to be used to sell MMS, I feel Amazon is responsible for the poisoning and abuse of autistic children around the United States.
In 1994, Peter J. Hotez's nineteen-month-old daughter, Rachel, was diagnosed with autism. Dr. Hotez, a pediatrician-scientist who develops vaccines for neglected tropical diseases affecting the world's poorest people, became troubled by the decades-long rise of the influential anti-vaccine community and their inescapable narrative around childhood vaccines and autism. The alleged link between the two was first espoused in a fraudulent scientific paper, long since retracted, but the story shows no signs of letting up. As a result, we've seen deadly and disabling outbreaks of vaccine-preventable diseases around the country, and Texas, where Hotez lives, is at particular risk.
In Vaccines Did Not Cause Rachel's Autism, Hotez draws on his experiences as a pediatrician, vaccine scientist, and father of an autistic child. Outlining the arguments on both sides of the debate, he examines the science that refutes the concerns of the anti-vaccine movement, debunks current conspiracy theories alleging a cover-up by the CDC, and critiques the scientific community's failure to effectively communicate the facts about vaccines and autism to the general public, all while sharing his very personal story of raising a now-adult daughter with autism.
A uniquely authoritative account, this important book persuasively provides evidence for the genetic basis of autism and illustrates how the neurodevelopmental pathways of autism are under way before birth. Dr. Hotez reminds readers of the many victories of vaccines over disease while warning about the growing dangers of the anti-vaccine movement, especially in the United States and Europe. A former US Science Envoy for the Department of State, he also explains what's at stake if the movement continues to gain ground. Opening with a foreword by leading medical ethicist Arthur L. Caplan, this book is a must-read for parent groups, child advocates, teachers, health-care providers, government policymakers, health and science policy experts, and anyone caring for a family member or friend with autism.
"Every time when I start school, I've been bullied," Samuel Aragon, 13, said. "I just want the bullying to stop."
Aragon's mother, Desiree Reyes, said her son was particularly troubled by a recent incident, in which her son's Nike shoes were stolen. The black and white Air Jordans were allegedly stolen from his locker by a classmate.
"It's not fair for kids who don't speak up, or can't speak up, because their voices can't be heard," Reyes said.
Furious, Reyes posted a request for help on Facebook, alerting parents to what happened.
But what happened next was a surprise. The community raised $215 to buy her son a new pair of shoes. The effort was spearheaded by Colton resident Daniella Chavez.
Autistic people may have different educational needs that need to be met to allow them to develop their full potential. Education and disability policies remain within the competence of EU Member States, with current educational standards and provisions for autistic people implemented locally. This scoping review aims to map EU and national special education policies with the goal of scoping the level of fulfilment of the right to education of autistic people.
Methods
Four EU countries (United Kingdom, France, Poland and Spain) were included in this scoping review study. Governmental policies in the field of education, special education needs and disability law were included. Path dependency framework was used for data analysis; a net of inter-dependencies between international, EU and national policies was created.
Results and discussion
Each country created policies where the right to free education without discrimination is provided. Poland does not have an autism specific strategy, whereas the United Kingdom, France and Spain have policies specifically designed for autistic individuals. Within the United Kingdom, all countries created different autism plans, nevertheless all aim to reach the same goal—inclusive education for autistic children that leads to the development of their full potential.
Conclusion
Policy-making across Europe in the field of education has been changing through the years in favour of autistic people. Today their rights are noticed and considered, but there is still room for improvement. Results showed that approaches and policies vastly differ between countries, more Member States should be analysed in a similar manner to gain a broader and clearer view with a special focus on disability rights in Central and Eastern Europe
From the article:
This study provided vital information on the right to education of autistic people in the UK, France, Poland and Spain. The scope of this study only included four countries, therefore the results cannot be generalized and clear conclusion on the average level of the fulfilment of the right to education cannot be drawn. More countries should be analysed to get a better picture of the situation across the EU. Additionally, since this is the first in a series of studies that map SEN policy in the EU, the findings have not been able to be triangulated to ensure reliability. Furthermore, the initial pool of identified studies has not been examined by other authors, meaning the reliability of the screening process cannot be guaranteed. More research should also be conducted to establish whether strategies that are in place have an effect on autistic children, such as improved learning, skills and higher rates of participation in education. To the best of our knowledge, there are no previous studies that have examined whether education of autistic people in EU countries is directed to development of their talents, creativity and provides them with skills they need to successfully progress into employment. To this day, the research in the field of education and autism policies in the EU as well as globally is scarce and remains an important gap in autism research. It is for this reason that this study aimed to review existing information as well as attract interest to conduct more research in this field in the future.
Background: Whilst the prevalence of autism spectrum disorders in adults within the community setting is well-established, less is known about the prevalence among adults based within a psychiatric inpatient setting.
Objective: To conduct a systematic literature review pertaining to the prevalence of autism spectrum disorders among the adult psychiatric inpatient population.
Method: Eligibility criteria included: (a) investigation of the prevalence of autism spectrum disorders (b) adult psychiatric inpatient study population (c) published in English language. Electronic databases accessed included PubMed, Medline, CINAHL, PsycINFO and EMBASE. Additionally, the ancestry method was utilised for the references of eligible papers, as well as grey literature searches and consultation with experts in the field.
Results: From the search, 4 studies were identified which satisfied the inclusion criteria, conducted in a variety of inpatient psychiatric settings, including secure forensic and intellectual disability units and a state psychiatric hospital. There were significant differences in methodological approaches, including the screening tests, diagnostic instruments and diagnostic criteria utilised. Autism spectrum disorder prevalence estimates varied considerably, from 2.4-9.9%.
Conclusion: From the limited research data currently available, it appears that the prevalence of autism spectrum disorders is increased in inpatient psychiatric settings relative to the general population. There is a need for further high quality research in this patient group, to add to this limited evidence base, as well as in developing effective strategies to identify patients with a high likelihood of autism spectrum disorders within this setting.
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.
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.
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!
"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
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.
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 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
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.
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.
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.
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.
