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
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
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.
