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Sunday, February 16, 2020

Rising Numbers in California

In The Politics of Autism, I discuss the controversy surrounding diagnosis of autism and estimates of its  prevalence

Jill Escher at CalMatters:
In 1999, the state of California was in shock: baffling even the most seasoned of authorities, autism cases in the developmental services system had spiked from about 4,000 in 1987 to about 13,000 cases in 1998.
As it turns out, that was just a hint of what lay ahead: today, the Department of Developmental Services counts nearly 10 times that, more than 122,000 autism cases.
Back to the data, here’s more background Californians need to know:
  • The Department of Developmental Services identifies only 451 current autism cases from birth year 1984 (they will turn 36 this year), compared to 7,273 cases for birth year 2014, who will turn 6 this year. This is a 16-fold increase, with hundreds more born that year still expected to seek admittance. Worryingly, this upward trend shows no signs of abating.
  • Autism represented 5% of overall DDS cases in 1993, but now occupies nearly 40%. Disability service providers have been struggling to serve the autism wave, with its qualitatively different, and often more challenging, characteristics.
  • The California Department of Public Health has found a 10-fold increase in prevalence from .11% for 1987 births to 1.1% for 2013 births. Unpublished data indicate it is now closer to 1.4%. These numbers should dispel any notion that population growth or immigration is driving the autism increase.
  • California Special Education autism cases have also skyrocketed, from 14,038 cases in 1990 to 120,089 in 2018, an 8.5-fold increase. This autism spike has been fueling the need for ever-larger special education budgets across the state.
Alarmed by the lack of public reporting on autism growth, last month Autism Society San Francisco Bay Area called for a California Autism Reporting Program from the California Department of Public Health.

It is the least the state could do. These details, including levels of impairment lurking beneath the numbers, and the projected needs and costs for housing and services, are absolutely necessary if we are to responsibly find solutions for this burgeoning, vulnerable population.

Saturday, February 15, 2020

Antivax Lawmakers in Minnesota

Ricardo Lopez at
The small but vocal group of parents propagating fringe views about the safety and effectiveness of childhood immunizations have found unlikely allies — Minnesota lawmakers.
Through personal and official Republican Senate media channels on Facebook, as well as appearances at an anti-vaccination rally last year at the Capitol, more than a dozen state legislators in the House and Senate have lent the support of their elected offices to groups that medical professionals say are sowing disinformation about vaccinations. Other Minnesota lawmakers made appearances at a February 2019 event featuring vocal anti-vaxxer Robert F. Kennedy Jr. at the Minneapolis Club.
The Minnesota lawmakers include state Sen. Jim Abeler, R-Anoka, chair of the Senate Human Services Reform Finance and Policy committee, who formed the Minnesota Autism Council, an advisory panel. His decision to appoint two vaccine skeptics touched off criticism, given the 2017 measles outbreak in Minnesota, which was attributed to the work of anti-vaxxers spreading disinformation among the Somali community.
Kolina Koltai, a researcher at the School of Information at the University of Texas, has been studying the social media behavior of those active in the anti-vaccination movement for five years. In the past two, Koltai said she has detected a shift in partisan ID for those opposed to vaccinations, with Republicans increasingly more likely to sponsor legislation undermining immunizations.
“There’s a politicization of science that is happening,” Koltai said, likening it to the debate over climate-change, in which skeptics include many prominent Republicans who continue casting doubt on the scientific consensus.

Friday, February 14, 2020

Shortchanging Exceptional Families

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  As many posts have discussed, the challenges are especially great for military families.

Rose Thayer at Stars and Stripes:
After accusing the government officials in charge of the military’s Exceptional Family Member Program of “happy talk,” but no action, Rep. Jackie Speier, D-Calif., vowed Wednesday [2/5] to bring the six executives back to Capitol Hill every three months until they’ve met all the recommendations made for their programs by the Government Accountability Office nearly two years ago.
“We are going to be hawks on this,” said Speier, chairwoman of the subpanel on military personnel for the House Armed Services Committee.
Wednesday’s hearing was the first time in more than a decade that the committee had heard about the program, known as EFMP, which is a mandatory enrollment program for service members who have a family member with special needs requiring specialized medical care, treatment programs or educational services.
While EFMP is meant to ensure that those service members receive duty assignments to locations where those special needs can be met, testimony from two military spouses with children in the program and three representatives from military advocacy groups depicted the program is failing in several ways. About 135,000 military family members are enrolled in the program, as of April 2019.
Nikki Wentling at Stars and Stripes:
One of those family members was Shannon DeBlock, wife of Navy Cmdr. Jason DeBlock.

A few years ago, the DeBlocks were transferred from Annapolis, Md., to San Diego, where they fought with the school district for two years over the education of their son Wesley, 11, who has autism.

“They put up every single barrier they could think of to not educate him,” she said.

The legal battle ended in mediation, during which the DeBlocks agreed to move back to Annapolis, where they knew Wesley could receive an appropriate, special-needs education. While Shannon and their two sons live in Maryland, Jason DeBlock is stationed in Norfolk, Va., commanding the USS Truxton.

Though Wesley is now getting a good education, the move to San Diego had lasting effects. He went two years with little schooling, and his reading regressed from a second-grade level to that of a kindergartner.

“We chose to separate our family to avoid the conflict of a legal battle that appeared to be never-ending,” Shannon DeBlock said. “We rely on these school districts and educators to help our kids become independent as much as they can be, and to be contributing members of society. When schools do this, the impact is so huge. It could affect the rest of their lives.”

Thursday, February 13, 2020

Trump 2021 Budget v. Autistic People

From the Autism Society:
The Autism Society of America is very disappointed that the President’s budget request for Fiscal Year 2021 released yesterday is overall unsupportive of our most vulnerable populations, including the almost 3 million individuals with autism and their families (read detailed summary here).
“Supporting those with autism is a human rights issue,” stated Christopher Banks, President and CEO of the Autism Society of America. “This budget requires tremendous sacrifices from those with the least able to make those sacrifice. The President’s budget dramatically reduces the funding for vital programs and services that assist those with autism. This budget will negatively impacting their quality of life and reduce opportunities to fully participate in our communities.”

As in the previous three budgets, this year’s request proposes steep reductions in social-safety-net programs, including cuts to Medicare, Medicaid, and Social Security. The Administration proposes $1 trillion in cuts to Medicaid and the Affordable Care Act over ten years. Over ten years, Social Security is cut by $30 billion and Supplemental Nutrition (SNAP) programs are reduced by $180 billion.

According to the Budget Summary for the Department of HHS, the Administration, once again, completely eliminates Autism CARES Act funding for much needed interdisciplinary training of health professionals and the development of evidence-based services and support. The Autism and Other DD line item funds the interdisciplinary professional health programs (including Leadership Education and Neurodevelopmental Disabilities (LEND) and Developmental Behavioral Pediatrician (DBP) programs) intended to increase the number of health professionals to screen, diagnose, and treat individuals with autism. It also funds development of evidence-based interventions.
These activities were increased as part of the original Autism CARES Act (just reauthorized in 2019) to help address the growing numbers diagnosed with autism. Congress rejected these cuts in the previous three years.

Without any justification, the budget also eliminates a small but vital Supported Employment State Grants for people with developmental disabilities.
While the Budget for the Department of Education provides a small increase for special education programs, this amount has not kept up with the number of children found to be eligible, pushing more of the responsibility onto the states. The Autism Society supports full funding for the Individuals with Disabilities Education Act (IDEA).
The President’s budget also cuts funding for the Centers for Disease Control and Prevention by nine percent overall, which includes a $50 million cut to the National Center on Birth Defects and Developmental Disabilities (NCBDDD), a third of its budget. This center provides important surveillance activities as well as research and public education into complex neurodevelopmental disabilities such as autism.
“We know there are many in Congress who understand the challenges people with autism and their families face,” Banks continued. “Individuals living with autism have proven time and time again, when given the opportunity, they can improve their quality of life, be loyal and dedicated members of the workforce, and active members in their communities. ”
“We need members of Congress to stand up and fight for their constituents. We are encouraging individuals and families to communicate with all of their elected officials about how this budget affects people with autism,” said Banks.
The Autism Society of America is the nation’s oldest and largest grassroots organization representing individuals and families impacted by autism. For more information, contact Kim Musheno at 301-657-0881, ext. 9020.
Read our further analysis here.

Wednesday, February 12, 2020

Housing for Adults

The Arc has a report titled: "THERE’S NO PLACE LIKE HOME: A National Study of How People with Intellectual and/or Developmental Disabilities and Their Families Choose Where to Live." The report involved a national online survey and focus groups in Illinois.  From the executive summary:
The deinstitutionalization of people with intellectual and/or developmental disabilities (I/DD) has reached an all-time high, with the majority of people with I/DD living in community-based settings. Community living is not only preferred by people with I/DD, it is also more cost effective and results in increased positive outcomes across almost all quality of life domains, improved health and safety outcomes, and increases in community participation, relationships, strengthened family contact, and self-determination.
Currently, around 75% of adults with I/DD live with a parent or other caregiver and are not connected to publicly available services and supports. In addition, nearly one million households have a caregiver over the age of 60. As a result, aging parents and family members frequently serve as unpaid primary caregivers for their family member with I/DD. Many of these families worry about what will happen when they are no longer able to provide their family member with I/DD support, including whether their family member will have to live somewhere they do not want to live. To address these concerns, it is important and necessary for people with I/DD and their families to plan for the future. However, more than half of families have indicated that they do not have a plan for the future.
Findings revealed that although there were many reasons people with I/DD moved from their family homes, or moved across residential settings, most commonly people moved as a result of a need for more support, family members having difficulty caring for their loved one, a desire for more independence, or emergency placements resulting from health or safety issues. People with I/DD and family members of people with I/DD often completed rigorous research to determine which options they had available to them; however, information was difficult to find and there was a general lack of resources. In addition, most people with I/DD, especially those with higher support needs, had few options to choose from as a result of an underfunded and inadequate service system. In addition, most of the time family members made the decision about where their family member with I/DD would live on their behalf, sometimes while consulting them, but other times without.
As a result of these wants and needs, the overwhelming majority of people with I/DD as well as family members wanted people with I/DD to live in their own homes or apartments. People with I/DD also dreamt of having opportunities to learn new skills, such as cooking or cleaning, having more independence, being able to see their friends whenever they wanted, having a physically accessible home, and being treated with respect.
Autistic people accounted for about 22 percent of the disabled people in the sample. From the report:
Athough it was a very small group – only a handful of people – there were some family members who also blamed the lack of institutional options for people with higher support needs on “people who believe they know what’s best,” “influencers who think everyone belongs in one type of setting,” and “autism self-advocates [that] have ruined it for the severely autistic."

Tuesday, February 11, 2020

Cultural Sensitivity and Appalachia

In The Politics of Autism, I discuss cultural differences in the ways families deal with autism and how service providers try to meet their needs.

At The Journal of Appalachian Health, and Angela Scarpa and colleagues have an article titled "Access to Autism Spectrum Disorder Services for Rural Appalachian Citizens.  Not surprisingly, they find problems of availability and affordability. Another problem, however, has gotten less attention: cultural sensitivity to rural people.
When considering increasing the workforce of mental health providers in rural Appalachian regions, policy makers and educators may need to consider the addition of multicultural training that is specific and sensitive to the history and needs of Appalachian residents. It has been suggested, for example, that providers need to spend more time building rapport with clients by engaging in chit-chat and pleasantries (i.e., “front porch talk”), and getting to know specific terms that are used in the region (e.g., “having nerves” to mean experiencing anxiety).Similarly, providers in our sample suggested the need to establish trust and to respect client autonomy by becoming part of the community, avoiding jargon, and treating clients without condescension. Diversity training that includes such information about cultural attitudes may help overcome some initial mistrust of professionals and facilitate better therapeutic relationships. Interestingly, the caregivers themselves did not report these cultural barriers, noting only childcare as the primary barrier to participating in treatment. It is not clear if the lack of caregiver report was due to the small sample size, or if there is a real discrepancy in how families versus providers view barriers to seeking treatment.

Monday, February 10, 2020

Autistic Candidate for New York State Assembly

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."  Previous posts have discussed autistic political candidates in GeorgiaTexas, and Washington State

Andrew Hyman at WHEC-TV in Rochester, New York reports on a SUNY Brockport student running for the New York State Assembly.
Dylan Dailor, 20, says he's the first assembly candidate with autism among the two major parties. Dailor was first diagnosed with autism when he was just seven.

"I don't want anyone to vote for me because they feel bad, this isn't a come from behind story," Dailor says.
The Greece native, who was endorsed by the Monroe County Democratic Committee at its convention last week, is running for the 134th District seat. That seat is currently held by incumbent Peter Lawrence, a Republican.

Sunday, February 9, 2020

Emerging Democratic Consensus on Disability

Harold A. Pollack and Samuel R. Bagenstos at JAMA Health Forum write of "the emerging consensus" among Democratic candidates about disability policy.
Three of the leading Democratic contenders—Senator Warren, Senator Sanders, and Mayor Buttigieg—present particularly detailed and actionable plans. Some of what they propose will only be possible with the (unlikely) passage of their ambitious and comprehensive health care plans. Whatever the fate of their overall proposals, many of their specific disability provisions could be readily translated into discrete pieces of legislation should a Democrat win the presidency. Some of what they propose might be legislated right now, with at least some possibility of bipartisan support.

A short commentary cannot engage the full complexity of these proposals. Some components to address social determinants bear brief mention. Most Democratic candidates endorse full or greatly expanded funding for the Individuals with Disabilities Education Act (IDEA) to address educational barriers faced by students who live with disabilities. The underfunding of IDEA has been a persistent problem for Americans with disabilities, and one is entitled to be skeptical that—finally, this time—the candidates will truly follow through on their promise of full funding. But the broad consensus on the issue in the Democratic primary suggests that the proposal now has its strongest chance in recent history of being enacted.
Democrats’ 2020 proposals also mark a departure from the curiously marginalized role of disability policy and disability constituencies within prior health reform efforts.2 In retrospect, the ACA must be regarded as a substantial missed opportunity to address many gaps in our current disability system. Democrats don’t want to make the same mistakes again.
Many Democrats’ positions appear to have been crafted in response to questions raised by leaders within the disability community itself—particularly the influential questions raised by the Center for American Progress’s Rebecca Cokley

Saturday, February 8, 2020

Another Victim of the Antivaxx Movement

Brandy Zadrozny at NBC:
Facebook groups that routinely traffic in anti-vaccination propaganda have become a resource for people seeking out a wide variety of medical information — including about the ongoing flu season.
Facebook hosts a vast network of groups that trade in false health information. On “Stop Mandatory Vaccination,” one of the largest known health misinformation groups with more than 178,000 members, people have solicited advice for how to deal with the flu. Members of the group have previously spread conspiracies that outbreaks of preventable diseases are “hoaxes” perpetrated by the government, and use the groups to mass-contact parents whose children have died and suggest without evidence that vaccines may be to blame.

One recent post came from the mother of a 4-year-old Colorado boy who died from the flu this week. In it, she consulted group members while noting that she had declined to fill a prescription written by a doctor.
The child had not been diagnosed yet, but he was running a fever and had a seizure, the mother wrote. She added that two of her four children had been diagnosed with the flu and that the doctor had prescribed the antiviral Tamiflu for everyone in the household.
“The doc prescribed tamiflu I did not pick it up,” she wrote.

Friday, February 7, 2020

Waiting Lists and Shortages

The huge baby boom generation is now entering old age, so the number of Alzheimer’s patients will soar.  Competition for suitable workers could drive up the costs of care.   And those costs will rise just as overall government budgets are getting tighter.  The aging of baby boom generation will mean fewer workers paying taxes and more seniors drawing benefits, simultaneously squeezing revenues and expenditures at all levels of government.   “People assume the state will be there to help with their child,” financial planner John Nadworny says, “but that’s a really risky bet.”   

Published regularly since 2006, the Case for Inclusion assesses all 50 states and the District of Columbia on 58 measures indicating how well state programs are supporting people with intellectual and developmental disabilities (I/DD). These 58 measures span seven key issue areas: Addressing a Workforce in Crisis, Keeping Families Together, Promoting Independence, Promoting Productivity, Reaching Those in Need, Serving at a Reasonable Cost and Tracking Health, Safety & Quality of Life.
Nationally, the Case for Inclusion 2020 finds:
  • The total number of people with I/DD on waiting lists for Home and Community Based Services increased by 49,000, from 424,000 in the last report to 473,000 in this year’s report. Ten states saw decreases in the number of people on their HCBS waiting lists, while 23 states saw their waiting lists grow.
  • Nationally, the turnover rate for direct support roles was 43.8%. In large part, this can be explained by low median hourly wages for DSPs, which stood at just $12.09 nationally.
  • The percentage of people with I/DD working in integrated employment—meaning they are participating in a program that is supporting them to work alongside people without disabilities—crept upward by just one percentage point, from 19% in the Case for Inclusion 2019 to 20% this year. Across the nation, there were 127,000 people with I/DD working in competitive employment, up from 124,000 in last year’s report. Whereas only seven states in the Case for Inclusion 2019 could boast that more than one-third of its residents with I/DD were engaged in competitive employment, that number increased to 10 states in 2020.
  • There was an increase of two percentage points in the number of people with I/DD engaged in self-direction, from 11% in FY 2017 to 13% in FY 2018.

Thursday, February 6, 2020

"Lifetime Social Cost"

Janet Cakira and colleagues have an article in  Research in Autism Spectrum Disorders titled "The lifetime social cost of autism: 1990–2029."

  • This study applies existing data on population, prevalence, and the cost of meeting the needs of individuals with ASD to estimate the lifetime social cost for the United States and each of the 50 states 1990–2029.
  • ASD is associated with approximately $3.6 million in lifetime social cost.
  • The lifetime social costs to date are more than $7 trillion, the equivalent of about two years of total federal revenue for the United States.
  • By 2029, If prevalence remains the same, the cost will grow to $11.5 trillion, and if prevalence continues to increase at the past rate, the cost will grow to nearly $15 trillion.
  • A variety of approaches in the field of vulnerability assessment and risk management could be used to identify known modifiable risk factors that could potentially reduce rates, thereby reducing costs.
This cost of illness analysis computes a baseline and future estimate of lifetime social costs associated with autism spectrum disorder (ASD) for the 50 states in the United States (US). The number of cases of ASD are estimated, then multiplied by annual direct and indirect medical and non-medical costs identified in the peer-reviewed literature. This amount is then extrapolated across the number of years each cost type is expected to be incurred to calculate a total lifetime cost for each state in the US from 1990–2019, and to project future cost for 2020–2029. From 1990–2019, there have been an estimated 2 million new cases of (ASD), with social costs of more than $7 trillion. If the future prevalence of ASD remains unchanged over the next decade, there will be an estimated additional 1 million new cases, resulting in an additional $4 trillion to the United States in social costs, however if the rate of increase in prevalence continues, costs could reach nearly $15 trillion by 2029. The financial burden of ASD is significant and identifying the modifiable causes of ASD has the potential to provide tangible benefits.
 The framing of "social cost of autism" is controversial.  An alternative frame is "social cost of failing to accommodate people on the spectrum"  As Ari Ne'eman once said:
And let's say that person does not get what they need in order to work. Would your model attribute those lost earnings, the cost of those lost earnings, to autism, to that individual's being on the autism spectrum, or would your model attribute the costs to lack of support or lack of accommodations or to discrimination?

Wednesday, February 5, 2020

Trump and Vaccine Hesitancy

In The Politics of Autism, I discuss the issue's role in presidential campaigns. In the 2016 campaign, a number of posts discussed Trump's support for the discredited notion that vaccines cause autism. He also has a bad record on science and disability issues more generally.

  • Trump voters are more concerned about vaccines than other Americans.
  • This effect emerges via Trump voters' greater willingness to believe conspiracies.
  • Reading Trump's antivaxx tweets increases vaccination concern among Trump voters.
  • Trump's antivaxx tweets did not polarize liberal voters into being more provaxx.
The abstract:
Donald Trump is the first U.S. President to be on the record as having anti-vaccination attitudes. Given his enormous reach and influence, it is worthwhile examining the extent to which allegiance to Trump is associated with the public's perceptions of vaccine safety and efficacy. In both Study 1 (N = 518) and Study 2 (N = 316), Trump voters were significantly more concerned about vaccines than other Americans. This tendency was reduced to non-significance after controlling for conspiracist ideation (i.e., general willingness to believe conspiracy theories) and, to a lesser degree, political conservatism. In Study 2, participants were later exposed to real Trump tweets that either focused on his anti-vaccination views, or focused on golf (the control condition). Compared to when the same respondents were sampled a week earlier, there was a significant increase in vaccine concern, but only among Trump voters who were exposed to the anti-vaccination tweets. The effects were exclusively negative: there was no evidence that anti-vaccination Trump tweets polarized liberal voters into becoming more pro-vaccination. In line with the social identity model of leadership, Study 2 indicates that some leaders do not simply represent the attitudes and opinions of the group, but can also change group members' opinions.

Tuesday, February 4, 2020

Child Care

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Child care is a big one.

Cristina Novoa at the Center for American Progress:
This report examines families’ child care experiences when they have children ages 0 to 5 with disabilities and offers policy solutions that are critical to supporting these families. Although the term “disability” applies to a diverse community of individuals representing a broad array of conditions and experiences, people with disabilities often face similar barriers to full participation in social programs and institutions, including child care. Using quantitative data from two nationally representative surveys—the 2016 Early Childhood Program Participation Survey (ECPP) and a combined sample of the 2016–2018 National Survey of Children’s Health (NSCH)—as well as qualitative interviews conducted in fall 2019 from a diverse sample of parents across the United States, the report’s analyses demonstrate that families face significant obstacles to finding appropriate child care arrangements. (see Appendix for full methodology) To ensure their children’s care, parents develop complicated arrangements involving formal and informal caregivers, often with significant consequences for careers, financial well-being, and family life.
Key findings from the analysis include:
  • ECPP data show that, compared with parents of nondisabled children, a larger proportion of parents with disabled children experience at least some difficulty finding care (34 percent vs. 25 percent) and are unable to find care (34 percent vs. 28 percent).
  • Both ECPP survey data and interview data show that parents face numerous barriers to care, including a lack of available slots, scheduling challenges, and concerns about quality.
  • Interviewed parents reported patching together help from extended family, child care centers, special education preschool, and nurses and home health aides, as well as making significant changes to their jobs to provide care.
  • An analysis of NSCH data shows that, compared with parents of nondisabled children, parents of young children with disabilities are three times more likely to experience job disruptions because of problems with child care.
  • The consequences of not finding care extend far beyond job disruptions; many interviewed parents reported greater financial strain, health challenges, and increased stress.
Supplementing these quantitative data with qualitative findings tells an even richer story of parents’ experiences with child care. Whereas quantitative survey data provide information about number and frequency—for example, how many child care arrangements a family uses or how often a pre-K program calls a father to pick up his autistic child because of challenging behavior—qualitative data shed light on the meaning behind those events.4 For example, interviewing the father may reveal that after a month of weekly calls, he feels the program no longer welcomes his family, and he sees little choice but to find a new arrangement.5 (see the Appendix for additional information on the data sources)

Monday, February 3, 2020

New York Schools Keep ABA Out of IEPs

Michael Elsen-Rooney at The New York Daily News reports that New York City offers ABA as part of early intervention, then declines to include it in IEPs.
But after age three, thousands of kids — many of whom thrive under the approach — are suddenly forced to drop ABA in city preschools and elementary schools, where it’s rarely offered, according to parents and advocates.

A group of parents has now filed a class action lawsuit against the city and state education departments charging the lack of ABA violates federal special education law.
 “It’s devastating to see these families desperate, to hear the stories of regression, and to know that it was clearly preventable,” said Elisa Hyman, the special education lawyer representing the families in the lawsuit.
“In my view, it’s blatantly illegal for the department to adopt a blanket policy whereby it refuses to consider, or provide, ABA services,” Hyman added.
 Education Department officials acknowledged they don’t include ABA on individual education plans, which are the legal documents that govern special education services, though they’ve added programs across the city that use the approach.
From Hyman:
Autism Services Class: The Autism Services Class consists of all current and future (i) children who are diagnosed with or classified as autistic, reside in New York City, have an IEP, and have been subject to the Modified Autism Services Policies and Practices. Plaintiffs allege that the Defendants, including the New York City Department of Education and the New York State Education Department, have adopted policies and practices that, among other things, prohibit IEP teams in New York City from recommending certain Autism Services. For purposes of the case, the “Modified Autism Services” are defined as (a) 1:1 instruction with a teacher for all or part of the day; (b) Applied Behavioral Analysis (“ABA”); and (c) extended school day, after school or home-based services (for students attending a school-day program).

Sunday, February 2, 2020

Sensory Rooms at College

Karen Weintraub at The Independent:
College has resumed on America’s campuses, and most students can work through their start-of-semester stress with a trip to the gym, a comforting call with a parent or a late-night binge.

But for some students, normal days are a challenge – let alone high-stress exam periods and the beginning of a new term. That’s why a small but growing number of schools offer special rooms where students with anxiety, autism, ADHD, post-traumatic stress disorder or sensory challenges can go to decompress.
Adelphi University in New York appears to have started the trend. Since January 2018, the university has had a sensory room set aside for students who need downtime with or without stimulation. For some, the bubble lights and gentle white noise help bring calm; for others, peace comes with a heavy blanket and noise-cancelling headphones. Such sensory rooms aim to appeal to people with a range of needs, allowing them to choose for themselves what will help.
Ms Morse, Mr Colena and Ms Samojedny attend Stony Brook University, part of the State University of New York, on Long Island. Last summer, Wendi Mathews, who directs the school’s Student Accessibility Support Centre, turned a waiting room into a sensory room. About 30 per cent of the centres’ students used to sit in that space, killing time before taking a test or seeing a counsellor. This past fall, though, more than 75 per cent who visited the support centre reported using the sensory room while waiting; other students come specifically to sit in the room, taking advantage of the special pillows, seating and activities to regain their composure, feel better about themselves or simply catch a few minutes of peace.

Saturday, February 1, 2020

Special Education Leadership Program

In The Politics of Autism, I write about education and laws that affect students with disabilities, such as the Individuals with Disabilities Education Act.
The Center for Disabilities Studies, in partnership with other education centers at the University of Delaware and the Delaware Department of Education (DDOE), will offer the state’s first special education-specific leadership training program starting in 2020. Called the Special Education Administrative Leadership (SEAL) program, it will be supported by a five-year, $1 million grant from the U.S. Department of Education. Applications are available beginning Monday, Jan. 6, and the training sessions will launch in August.
The Center for Disabilities Studies is part of UD’s College of Education and Human Development.

CDS will implement the SEAL program, designing and delivering special education coursework and handling the logistics of internships, single-day retreats and other opportunities available to participants. The 18-month curriculum will also include school leadership preparation designed by the UD Delaware Academy for School Leadership (DASL). DASL will draw from its Principal Preparation Program, which serves as an alternative route to assistant principal and principal certification in Delaware. UD’s Center for Research in Education and Social Policy will conduct regular program evaluations.
While Delaware currently offers a Special Education Director credential, it does not align with present standards for administrators because it does not specify the knowledge or skills that individuals must have in order to qualify for certification. Fewer than half of the state’s special education directors hold the credential.
CDS Director Beth Mineo said that SEAL will close this gap by imparting “a keen understanding of special education law and financing, evidence-based assessment and intervention practices, family collaboration, conflict resolution and a host of other topics. Our graduates will be in a position to navigate the complexities of special education with wisdom and grace.”
SEAL participants, expected to be a mix of special educators, school administrators and district leaders, will take courses such as “Leading for Learning and Results,” attend 12 additional intensive mini-retreats on relevant special education topics, conduct research on a real-world challenge that exists in their school or district and undertake multiple internships. Totaling at least 240 hours, the internships will immerse participants in day-to-day work at the school, district and state level as well as experiences tailored to students’ areas of interest.