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Friday, September 21, 2018

Autistic Person Is a Statewide Candidate in Georgia

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"

Adam Murphy reports at WGLC-TV in Atlanta:
At State Farmer's Market in Macon, fresh fruits and vegetables aren't the only thing that's home-grown.

Born and raised in central Georgia, Fred Swann is running for statewide Commissioner of Agriculture, but it's not the only challenge he's facing.

"No challenge for someone on the autistic spectrum, no challenge it presents should hold them back from being a contributing member of society, even a politician," said Swann.

He's not only autistic, he's now the Democratic nominee for office.

"The outpouring of affection and support that I have gotten has been overwhelming," said Swann.



From his campaign website:
I was born and raised in Middle Georgia, in both Warner Robins and Macon by a single mother. For most of my childhood, she worked two, sometimes three jobs just to make ends meet to provide for our family, instilling in me the value of hard work. I spent much of my childhood with my grandparents.
After he retired, my grandfather took up farming on a side acre of land. He grew tomatoes, corn, snap peas, and other assorted crops. Today, he would be called a micro farmer. To him, he was just filling his days with productive work.
He would send his family home with bags of produce from his land. He also sold tomatoes on a roadside stand for extra money. I helped him work the land, pull weeds, really anything he needed. In exchange, I learned valuable lessons about hard work and developed a strong appreciation for our farmers. As a person with autism, I never forgot how therapeutic that work was for me.
Swann discusses autism at about 6:50 in this video:

Thursday, September 20, 2018

Special Education In Puerto Rico


Kyra Gurney reports at The Miami Herald:
It was the second day of the new school year in Puerto Rico, but 7-year-old Angel Torres wasn’t in class. He was at a physical therapy session, struggling once again to stand on his own, when the boy’s therapist asked his mom how school was going.
“Bad. Terrible,” Brenda López said, frustration spilling out. “The classroom isn’t suitable for him.”
A year after Hurricane Maria changed almost everything on the island, hundreds of parents like López were left struggling to find classrooms, teachers and therapists for their children with autism, Down syndrome or cerebral palsy. What had been a daunting task before the storm — finding a place where their special needs children could thrive — had become vastly harder afterward, as the government shuttered more than 250 schools and the education department scrambled to relocate students and staff. The Department of Education said in late August that it still needed to fill 132 vacancies for special education teachers. And that meant some kids like Angel, who has cerebral palsy and cannot walk on his own or talk, were left in limbo.

Wednesday, September 19, 2018

Grandparents

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families

A family systems approach is required to identify the needs of families of children with autism. This paper explores how grandparents support children with autism and their parents using a family systems perspective. A thematic analysis of eighteen semi-structured interviews was conducted with participants from nine [Irish] families, capturing experiences of both parents’ and grandparents’. Themes identified were family recalibrating; strengthening the family system; and current needs and future concerns of grandparents. The views of families indicated the overwhelming need to acknowledge the grandparental role in supporting families that strengthen the family system by supporting the needs of a child with autism. Findings revealed that grandfathers have a calming role in these families where children have significant behavioural difficulties.
From the article:
Grandparents of children with ASD provide supports, not only to the children themselves, but also to their son or daughter whose child has autism. To reduce the burden families can experience, they would benefit from a family systems approach to empower grandparents to respond proactively to the needs of the family. It is incumbent upon professionals to devise supports to meet this need and to give recognition to grandparents of the valuable role they play. This research is a rallying call to professionals to consider the roles of grandparents more formally in their interactions with families of children with autism, and to identify supports to meet grandparents’ needs that ultimately improve the functioning of the family system

Tuesday, September 18, 2018

Opioid Withdrawal and Autism

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

Christina Samuels at Education Week:
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.
The children who faced opioid withdrawal as babies were more likely to be evaluated for special education services and, once evaluated, were more likely to be found eligible, according to the report, published in August in the journal Pediatrics. Most of the children's disabilities were in five categories: autism, developmental delay, "other health impairment," specific learning disability, and speech and language impairments

Monday, September 17, 2018

Another Step Forward for the EMPOWER Care Act

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

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.

"PMHC is grateful for the bipartisan support that the Committee has provided for H.R. 5306, the Ensuring Medicaid Provides Opportunities for Widespread Equity, Resources, and Care Act (EMPOWER Care Act). Introduced by Representatives Brett Guthrie (R-KY) and Debbie Dingell (D-MI), this measure reauthorizes the highly successful Money Follows the Person (MFP) demonstration program.

"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.

Sunday, September 16, 2018

Amazon Allows Sale of Quack Autism "Cure"

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

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.
Shame on you, Amazon. Stop allowing sellers to market a product that the FDA warns people from using.
Amazon must be held accountable.
Please report Amazon for Unlawful Sales of Medical Products on the Internet.

Saturday, September 15, 2018

Important Forthcoming Book

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

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.