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Tuesday, October 16, 2018

Housing in the San Diego Area

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their familiesHousing is a big one for autistic adults.

Gary Warth at the San Diego Union-Tribune:
Three apartment buildings expected to open in Otay Mesa next July will provide some relief for area families in need of affordable housing and also answer a pressing need to help people with mental health issues live independently.
Pacifica at Playa del Sol in Otay Mesa will include 42 affordable apartments for qualifying tenants, with 12 units specifically for low-income residents with developmental disabilities.

This will be the third project built in a public/private partnership in the county that has included the units for people with developmental disabilities.

“Lately we’ve begun to make some tremendous inroads into the field of affordable housing,” San Diego Regional Center Executive Director Carlos Flores said at a Monday groundbreaking ceremony for the project.
...
San Diego Regional Center will help provide assistance to them in a variety of ways, Flores said. That assistance may include transportation, employment opportunities and lessons in cooking, budgeting and cleaning.
...
The development is one of six projects supported by the Innovative Housing Trust Fund, which Cox said is part of a $25 million investment to create 523 affordable units from Vista to South County.

People interested in living at Pacifica at Playa del Sol can learn how to apply by calling (760) 484-2831.

Sunday, October 14, 2018

Autism in a Canadian Municipal Election

In The Politics of Autism, I discuss the need for more research on autism in countries other than the United States.

Surrey First is a political organization in Surrey, British Columbia, Canada. In the campaign for the October 20 election, it is putting emphasis on autism.  A release:
Surrey First mayoral candidate Tom Gill wants to expand his city’s efforts to make sure Surrey’s 1,600 children with Autism Spectrum Disorder (ASD) feel at home in Surrey’s parks, pools, rinks and community centres. This summer, Surrey introduced “Sensory Friendly Spaces” at public events and has provided training to 100 of its recreational centre staff.

“I want Surrey to lead the country in inclusivity, particularly for our children,” said Gill. “Here in Surrey we’ve made a terrific start, but I want to take it further faster. Our Surrey First team wants to see another 500 of our parks, rec and library staff trained by June of next year, offer training to the more than 3,500 soccer, baseball, hockey and football coaches in our city, and pilot a Snoezelen sensory room in our new Clayton Community Centre which is under construction and set to open in summer 2020.”

Developed in Holland nearly 40 years ago, the Snoezelen (“explore and relax”) sensory rooms use sound, light, colour and texture to provide a multi-sensory experience for children with autism. Gill said he wants the pilot room to be a template for other Snoezelen rooms.

Gill said he wants to work with organizations such as the Canucks Autism Network and Pacific Autism Family Network to become a “champion for inclusion” that ensures children with autism and their families feel welcome and included.

Saturday, October 13, 2018

Unvaccinated

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

Caroline Kee at Buzzfeed:
Although overall vaccination coverage among children in the US remained relatively stable in 2017, a growing percentage of toddlers have received no vaccines at all, according to a new report from the CDC.
According to immunization guidelines, children should get vaccinated against 14 potentially serious diseases before their second birthday — but a number of very young children in the US have not been vaccinated against any of these diseases, according to the report, which looked at children aged 19 to 35 months.
The proportion of children who hadn't been vaccinated at all by age 2 was small compared to the millions of children who were vaccinated, but that proportion is gradually increasing. It rose from 0.9% for children born in 2011 to 1.3% for children born in 2015, according to the report.

From PBS:
In The Vaccine War — a documentary that first aired in 2010, and was then updated in 2015 against the backdrop of a measles outbreak — FRONTLINE took a powerful look at why there is still fear about vaccines among some parents, despite established scientific consensus that there is no link between vaccines and disorders like autism.
As FRONTLINE reports in The Vaccine War, parents who choose not to vaccinate their children have reasons that are complex — involving their perceptions of medical risks and benefits, and also ideological beliefs about parenting, personal choice and the limits of government.

Friday, October 12, 2018

New Head of OSEP


From the US Department of Education:
Laurie VanderPloeg will lead the Office of Special Education and Rehabilitative Services’ (OSERS) Office of Special Education Programs (OSEP) starting in November.
“My focus will be on developing and supporting an effective system that is going to meet the unique and individual needs of children with disabilities,” VanderPloeg said. “We need to look at the structures we have in place to ensure that each child is prepared for success.”
VanderPloeg started her career as a high school special education teacher at Wayland Union Schools in Wayland, Michigan.
She spent 15 years teaching high school and middle school students prior to earning her master’s degree in special education administration from Grand Valley State University in Grand Rapids, Michigan.
Since earning her master’s, VanderPloeg has served as the supervisor of special education for the Grand Rapids Public School District, a special education consultant with the Michigan Department of Corrections, and most recently as the director of special education for Kent Intermediate School District.
Learn more about Laurie VanderPloeg

At Education Week, Christina Samuels adds some detail:
VanderPloeg is currently president of the board of directors of the Council for Exceptional Children, an organization representing special education professionals. She was also a former president of the Council of Administrators of Special Education. And, her ties to western Michigan are deep, just like those of Education Secretary Betsy DeVos. A graduate of Grand Valley State University in Grand Rapids, VanderPloeg was a middle and high school special education teacher for 15 years in western Michigan school districts before entering administration.

Thursday, October 11, 2018

Labor/HHS Appropriations

The Politics of Autism discusses legislation before Congress.

From the Autism Society
On September 28, 2018 President Trump signed the annual appropriations bill for programs within the Departments of Labor, Health and Human Services, and Education (L-HHS-ED). Most disability programs are level-funded or provided slight increases. In addition, two new laws were funded. Kevin and Avonte’s Law received the authorized amount of $2 million for competitive grants awarded to non-profit and State and local entities to prevent wandering and locate missing individuals with cognitive disabilities, such as Alzheimer’s Disease, autism,or other developmental disabilities, as described in the law. Another law passed in this Congress, the RAISE Family Caregivers Act, was provided $300,000 to establish the Caregiver Advisory Council. Other highlights include the following:
  • An $86 million increase for special education IDEA state grants and $10 million more for preschool-age children with disabilities.
  • An increase of $1.5 million for professional development and the development of evidence-based services for people with autism through the Health Resources and Services Administration.
  • A $4 million increase for research into independent living for people with disabilities through the Administration for Community Living.
  • A $26 million increase for the Maternal and Child Health Block Grant, a flexible grant program providing home visiting, early childhood programs, and professional development, including those specific to assisting people with autism.
  • A $15 million increase for the Centers for Disease Control and Prevention’s (CDC) center providing surveillance, research, and services for those with developmental disabilities.
  • A $2 billion increase to the National Institutes of Health (NIH) to provide basic bench research.

Wednesday, October 10, 2018

Carlton Palms Coda




Carlton Palms —a Florida home for people with severe disabilities beset by rapes, rats and abuse — officially shut its doors Saturday, state officials announced.
The last of its 190 residents moved to a new community-based home over the weekend after years of abuse, violence and death perennially plagued the institution.
“Carlton Palms has officially closed,” said Barbara Palmer, who heads the Agency for Persons with Disabilities. “We have successfully transitioned nearly 200 people from an institutional placement into community homes. With this very important move for these individuals, we believe everyone will be much happier, healthier and have an opportunity to thrive in their communities.”
Carlton Palms, run by Bellwether Behavioral Health, was the only Central Florida institution licensed to care for intellectually disabled Floridians with severe behavioral challenges. Over the the last several months, residents have transitioned into smaller, community homes selected by their parents or guardians. Some moved back to their homes in Florida, others, out of state.

Tuesday, October 9, 2018

Latest "Breakthrough"

In The Politics of Autism, I discuss various ideas about what causes the condition and how to treat it.  I also write:  "If the science were not confusing enough, its coverage in the mass media has added another layer of murk.  News reports hype tentative findings and weak correlations as “breakthroughs” in the quest for autism answers. "

From The Daily Mail:

Autism breakthrough: New drug may 'turn down' enzyme that hijacks social behavior in people on the spectrum

A treatment for adults on the autism spectrum may be in sight, thanks to a new discovery.
After decades of research, scientists at Florida Atlantic University (FA) have discovered a new pathway in the brain linked to behavioral symptoms of autism - and a drug that may quell them.

Some autism advocates have increasingly been pushing for people on the spectrum to not be treated as 'disordered,' but rather as simply different.

On the other hand, the FAU researchers note that autism also frequently comes with physiological problems - particularly for the gut.

There are currently no treatments for autism in adults, but the team discovered a drug treated the behavioral 'disruptions' in mice genetically engineered to have autism, suggesting it might do the same for people on the spectrum.

Monday, October 8, 2018

Vaccine Hesitancy

To understand vaccine hesitancy, we need to understand how parents and providers navigate from the facts as they exist to a vaccination decision, a path that is influenced by surrounding culture (Figure 2). The Internet, and especially Web 2.0, are starting points for many: we cannot ignore these accessible sources of information and misinformation. One must assume that by now virtually all parents have heard that vaccines cause autism. How would this “fact” play out on Vulcan (Spock’s planet of origin, where logic is venerated and emotion vilified)? Parents would view the data through a probabilistic lens and conclude that the purported link is extremely unlikely. On Earth—where antiscience, fake news, and “alternative” facts have free reign—many people cannot differentiate the misinformation mash-up from scientific consensus. (Are there Vulcans who would see glaciers disappear before their eyes and deny that their planet was warming?) Science is under attack, and science agencies are degenerating. It is difficult to refute the fact that vaccines cause autism for parents who sense that (mainstream) science is not always right.
The final arbiter of decisions for Earthlings is, of course, the human mind—a computer that retains ancient algorithms that were responsible for its evolutionary success . One hears about a particular outcome (autism) in an exposed (vaccinated) person, and that is where the thinking stops: the association is confirmed. (Actually, the thinking never starts—our tendency to form snap judgments is innate, and we instinctually err on the side of false positives.) The end result: One case of autism in a vaccinated child is enough for me. No vaccines! Parents who think that vaccines can have serious side effects (Figure 2) are, technically, correct (Table 2).

Parents who color their interpretation of this fact through the they can’t prove vaccines are safe lens are also, technically, correct—science cannot rule out associations between vaccination and adverse events with absolute certainty. However, this is not a failure—it is the way science works. Science seeks evidence to reject or fail to reject the null hypothesis—that being, for example, vaccines do not cause autism. In failing to reject this null hypothesis, we run the risk of making an error (believing that vaccines do not cause autism when, in fact, they do). Our chances of making that error may be very, very small, but they cannot be zero (unless we test every single person who ever did or did not receive a vaccine, which is, well, every single person). This is a difficult concept for people to understand, especially those educated in the United States, a country where math and science education may soon qualify for life support.

Sunday, October 7, 2018

A Troubled Provider


Elisha Anderson and John Wisely at The Detroit Free Press:
Macomb County plans to cut ties with Michigan’s largest autism therapy provider, Centria Healthcare, after a slew of problems including an employee caught on video abusing an autistic child.
The decision follows a similar move by Lapeer County last year, which dumped Centria amid mounting frustrations with the company. Centria said it was told Lapeer wanted a cheaper provider but documents obtained by the Free Press show broader problems in both counties.
In Macomb, community mental health officials cited Centria repeatedly for things like patient care, billing and training issues. Last year, it placed the company on probation.
Then after a video showed a Centria employee taunting, dragging, pushing and swatting a 5-year-old autistic girl during a therapy session in March, the county decided to part ways. The transition to new providers is expected to be completed by the end of the year.
Nearly a year ago, the Free Press began examining thousands of internal and public documents related to Centria and interviewed former executives and employees who claimed the business has engaged in billing fraud, violating patient privacy, forgery, falsifying reports and employing unqualified people in an effort to boost profits.

Centria denies any wrongdoing and sued three former employees for defamation. That case is pending in Oakland County

Saturday, October 6, 2018

Special Education in New York City


Elizabeth A. Harris at NYT:
By the Education Department’s own accounting, more than 25 percent of students with disabilities, or nearly 50,000, did not receive the kind of specialized instruction to which they were legally entitled to in the 2016-17 school year, the most recent year for which that information was available. That was actually better than the year before, when more than 40 percent of students with disabilities did not receive their mandated instruction.

In many cases, the city doesn’t even know in real time if children are getting what they need because the computer system designed to keep track of interventions, which has cost the city at least $130 million, has been riddled with technical glitches and systemic problems since it was instituted in 2011.
While the graduation rate for all students has improved significantly in recent years, just 43.4 percent of students with disabilities finished high school on time in 2017, nearly 30 percentage points lower than the citywide rate. Nearly half of those graduates with disabilities received what’s called a local diploma, with requirements that are less rigorous than the norm.
Will Mantell, a spokesman for the department of education, said the city has made changes to improve special education by hiring more staff, and enhancing training and data tracking. “We’ve made real progress,” Mr. Mantell said. “We know there’s more work to do, and this is a focus area for the chancellor and the D.O.E.”
In the meantime, for students across the spectrum of disability, navigating the system can be a draining battle. “We find that families of students with a range of needs struggle to get the evaluations and services that their children need,” said Randi Levine, policy director of Advocates for Children of New York, which often intervenes with the Education Department on behalf of families. “We hear from families whose children only need speech therapy who are having difficulty getting it. And we hear from families whose students have autism and a range of complex needs who are having difficulty getting the classes and services their child needs.”

Friday, October 5, 2018

Benefits of Minimizing Restraint and Seclusion

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

A release from Ukeru:
A new longitudinal study, just released in the journal Advances in Neurodevelopmental Disorders, illustrates one behavioral healthcare facility’s ability to dramatically reduce physical restraint and completely eliminate seclusion by shifting to an approach of comfort versus control. The article, “Evaluation of a Program Model for Minimizing Restraint and Seclusion,” follows the sharp decline of the use of restraint and seclusion from 2004 – 2016 at Grafton Integrated Health Network, a Virginia-based facility that serves at-risk and high-risk clients (both children and adults) with intellectual, developmental, and psychiatric disabilities.
The study evaluated all of Grafton’s organizational operations, which included more than 750 employees and 3,244 clients in 2016. In the year before the program began (2003), there were 6,646 incidents of restraint and seclusion.
“We knew there had to be a better way,” said Kim Sanders, co-author of the study and Executive Vice President of Grafton. “Not only were these techniques harmful to both our clients and our staff, they simply didn’t work. In fact, consistent with the data, we saw that using restraint and seclusion was just reinforcing and maintaining aggression and violence. We decided to create a new model for addressing challenging behavior which was grounded in respect for all involved.”
A comfort versus control mindset was introduced as part of a trauma-informed approach. This method minimizes the chance for everyday operations to traumatize or re-traumatize clients during service delivery. The Grafton philosophy taught response blocking, promoted an understanding of behavioral intent and client needs, and encouraged the development of creative solutions as meaningful alternatives to restraint and seclusion. This cultural shift asked employees to reassure clients, ask questions instead of making assumptions, be flexible, let go of the need to have the “upper hand,” and treat others with kindness and compassion.
The results were dramatic:
  • A 99% decrease in restraint frequency
  • A 100% reduction seclusion (from 253 cases in 2003 to 0 in 2015 and 2016)
  • A 97% decrease in staff injury from a restraint
  • A 64% decrease in client-induced staff injury
  • An increase in client goal mastery 133% from 2003 to 2016
  • A savings of over $16 million in lost time expenses, turnover costs, and workers’ compensation policy costs
“This model of care not only has an impact on restraint and seclusion incident rates but has created a profound culture shift across the entire organization,” said James Stewart, Grafton’s Chief Executive Officer. “Our approach is rooted in the belief that the use of physical restraints is not only unnecessary, but also unproductive and that all intervention — educational and behavioral — should be built on an approach of comfort versus control.”
Now, through its Ukeru Systems division, Grafton has trained more than 100 other organizations on the conceptual and technical elements of the program. Ukeru provides support and capacity building to caregivers, teachers, parents and others, helping them to implement the model in their own environment.
“Our system shows that you can eliminate the use of restraint and seclusion without compromising safety, as long as caregivers are properly trained,” said Sanders, who is also the President of Ukeru. “Ultimately, it is about receiving, engaging, sensing, feeling and responding to what someone is trying to communicate to us through their actions while maintaining the safety of all those involved.”

Thursday, October 4, 2018

ESSA Is Often Falling Short for Students with Disabilities


From the National Center for Learning Disabilities:
NCLD is proud to announce the release of Assessing ESSA: Missed Opportunities for Students with Disabilities. This new report provides the first national analysis of how state plans include and serve students with disabilities under the Every Student Succeeds Act (ESSA), the nation’s new K-12 education law.
NCLD is committed to improving outcomes for students with disabilities, and we believe that through ESSA, states have an obligation and critical opportunity to make sure that our students are front and center in discussions about achievement, equity, school quality, accountability and improvement. States can do more to take advantage of this opportunity, and therefore must reflect on their progress and strive to make improvements in how they serve all learners.
The report rates each state’s, the District of Columbia’s and Puerto Rico’s ESSA plan on three key areas:
  • Holding Districts and Schools Accountable
  • Helping Struggling Schools
  • Collaborating to Support All Schools
The results of the ESSA analysis are troubling. Groups of students, including students with disabilities, low-income students and students learning English, are frequently neglected. For example:
  • 33 states do not include the academic performance of specific groups of students, like those with disabilities, in their school rating systems.
  • Only 18 states set the same long-term goals for students with disabilities as students without disabilities.
  • Roughly half of states don’t provide a detailed description of how they will work with their existing special education plans to improve outcomes for students with disabilities.

The bottom line: Most states need to do more.

Check out how your state scored in each rating area and read the full report at NCLD.org/AssessingESSA.

Wednesday, October 3, 2018

Medi-Cal and Behavioral Health Treatment

In The Politics of Autism, I discuss state Medicaid services for people with intellectual and developmental disabilities

A release from CARD:
Center for Autism and Related Disorders (CARD) welcomes the announcement from the State of California's Department of Health Care Services (DHCS) that Medi-Cal will cover behavioral health treatment, including applied behavior analysis (ABA), regardless of an eligible beneficiary's diagnosis. Earlier this year, DHCS announced that Medi-Cal enrollees under 21 whose diagnosis may benefit from ABA, as determined by a physician or psychologist, have access to behavioral health treatment.
"ABA has been shown to be effective in the treatment of many diagnoses, such as substance use disorder, Down Syndrome, and eating disorders, to name a few," said Michelle LaBruzzi, MA, BCBA. "We are looking forward to expanding the families we can help in addition to those in the autism community."
...
"We are happy to see California take the lead in expanding access to applied behavior analysis for our Medi-Cal community," said Doreen Granpeesheh, PhD, BCBA-D, founder of CARD.
In addition to traditional 1:1 intensive ABA programs, CARD offers focused ABA programs and several targeted programs, including feeding, pill swallowing, social skills groups, short and long-term treatment of severe problem behavior, and more focused parent training. Parents and caregivers are encouraged to participate in parent/caregiver training, which is available during non-traditional work hours and online

Tuesday, October 2, 2018

Big Funding Deal


From Autism Speaks:
Autism Speaks advocates for appropriations to ensure federal agencies that run programs for autism research, services, and supports are appropriately funded.
Twelve appropriations bills, which provide funding for the federal government in the next fiscal year, must pass each year. These bills must be enacted by October 1, or the government shuts down due to lack of funding.
Last week, an appropriations “minibus” was enacted that includes the funding bills for the Department of Defense, and the Departments of Labor, Health and Human Services, and Education for Fiscal Year 2019.
This is the first time the Labor-HHS-Education appropriations bill has been completed before October 1, the start of the new fiscal year, since 1999.
This spending package includes wins for autism research and services, including
  • $23.1 million for autism activities at the Centers for Disease Control and Prevention (CDC). CDC’s work includes providing essential data on autism spectrum disorder (ASD), searching for risk factors and possible causes, and developing resources to help identify children as early as possible.
  • $1.5 million increase to the Health Resources & Services Administration (HRSA) for autism activities, with $33.5 million of HRSA funds designated for LEND.
  • $7.5 million for the Autism Research Program at the Department of Defense. Since its inception in Fiscal Year 2007, close to $100 million has been directed to promote innovative research designed to advance the understanding of ASD and to improve the lives of those living with autism. 
  • $12.4 billion for IDEA special education, an $87 million increase over last year.
These funding increases and focus on autism-specific programs keep us on a path toward new autism discoveries and supports.
We owe a special thanks to Representatives Chris Smith (R-NJ) and Mike Doyle (D-PA)who led the effort for these programs in the House of Representatives, and Senators Amy Klobuchar (D-MN) and Thom Tills (R-NC) who led the effort in the Senate.

Monday, October 1, 2018

In Autism Intervention, Cheap Does Not Always Mean Good


At Autism, Giacomo Vivanti, Aubyn Stahmer have an article titled "Early Intervention for Sutism: Are We prioritizing Feasibility at the Expenses of Effectiveness? A Cautionary Note."
In the ASD early intervention field, the concept of sustainability is frequently—and mistakenly—equated with affordability, which refers to the initial costs of training providers and ongoing costs of implementing an evidence-based intervention. Accordingly, while factors promoting sustainment of interventions are under-researched, there is an increasing trend toward reducing intervention costs to make interventions more feasible for use in the community. In ASD, this is often accomplished by decreasing the intensity of an intervention or by lowering specialization standards or training requirements for those delivering the intervention. Three phenomena illustrate this trend: (1) the growing emphasis on low-intensity, parent-mediated early interventions (both in terms of publicly funded programs and new interventions being developed and tested; Nevill et al., 2018); (2) the increased reliance on paraprofessionals with minimal training or supervision to deliver interventions (e.g. behavior technicians who receive 1 week of training overall; Leaf et al., 2017); and, perhaps as a result of (1) and (2), (3) poor adherence to evidence-based practice protocol as providers adapt methods for their own context (Stahmer et al., 2005).
In short, it's the Iron Triangle of health care policy:  cost, access, quality.   One cannot maximize all three at the same time. There are always tradeoffs.

Image result for triangle cost access quality