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Monday, October 23, 2017

School Year 'Relative Age' Causing Bias in ADHD Diagnosis, Says Research

From the University of Nottingham

October 9, 2017

Younger primary school children are more likely to be diagnosed with attention deficit hyperactivity disorder (ADHD) than older peers within the same school year, new research has shown.

The study, led by a child psychiatrist at The University of Nottingham with researchers at the University of Turku in Finland, suggests that adults involved in raising concerns over a child's behaviour -- such as parents and teachers -- may be mis-attributing signs of relative immaturity as symptoms of the disorder.

In their research, published in The Lancet Psychiatry, the experts suggest that greater flexibility in school starting dates should be offered for those children who may be less mature than their same school-year peers.

Kapil Sayal, Professor of Child & Adolescent Psychiatry at the University's School of Medicine and the Centre for ADHD and Neurodevelopmental Disorders Across the Lifespan at the Institute of Mental Health in Nottingham, was the lead author on the study.

He said:

"The findings of this research have a range of implications for teachers, parents and clinicians. With an age variation of up to 12 months in the same class, teachers and parents may misattribute a child's immaturity. This might lead to younger children in the class being more likely to be referred for an assessment for ADHD.

"Parents and teachers as well as clinicians who are undertaking ADHD assessments should keep in mind the child's relative age. From an education perspective, there should be flexibility with an individualised approach to best meets the child's needs."

Evidence suggests that worldwide, the incidence of ADHD among school age children is, at around five per cent, fairly uniform. However, there are large differences internationally in the rates of clinical diagnosis and treatment.

Although this may partially reflect the availability of and access to services, the perceptions of parents and teachers also play an important role in recognising children who may be affected by ADHD, as information they provide is used as part of the clinical assessment.

The study centred on whether the so-called 'relative age effect' -- the perceived differences in abilities and development between the youngest and oldest children in the same year group -- could affect the incidence of diagnosis of ADHD.

Adults may be benchmarking the development and abilities of younger children against their older peers in the same year group and inadvertently misinterpreting immaturity for more serious problems.

Previous studies have suggested that this effect plays an important role in diagnosis in countries where higher numbers of children are diagnosed and treated for ADHD, leading to concerns that clinicians may be over-diagnosing the disorder.

The latest study aimed to look at whether the effect also plays a significant role in the diagnosis of children in countries where the prescribing rates for ADHD are relatively low.

It used nationwide population data from all children in Finland born between 1991 and 2004 who were diagnosed with ADHD from the age of seven years -- school starting age -- onwards. In Finland, children start school during the calendar year they turn 7 years of age, with the school year starting in mid-August.

Therefore, the eldest in a school year are born in January (aged 7 years and 7 months) and the youngest in December (6 years and 7 months).

The results showed that younger children were more likely to be diagnosed with ADHD than their older same-year peers -- boys by 26 per cent and girls by 31 per cent.

For children under the age of 10 years, this association got stronger over time -- in the more recent years 2004-2011, children born in May to August were 37 per cent more likely to be diagnosed and those born in September to December 64 per cent, compared to the oldest children born in January to April

The study found that this 'relative age affect' could not be explained by other behavioural or developmental disorders which may also have been affecting the children with an ADHD diagnosis.

However, the experts warn, the study did have some important limitations -- the data did not reveal whether any of the young children were held back a year for educational reasons and potentially misclassified as the oldest in their year group when in fact they were the youngest of their original peers.

The flexibility in school starting date could explain why the rate of ADHD in December-born children (the relatively youngest) were slightly lower than those for children born in October and November.

And while the records of publicly-funded specialised services which are free at the point of access will capture most children who have received a diagnosis of ADHD, it will miss those who were diagnosed in private practice.

Journal Reference
  • Kapil Sayal, Roshan Chudal, Susanna Hinkka-Yli-Salomäki, Petteri Joelsson, Andre Sourander. Relative age within the school year and diagnosis of attention-deficit hyperactivity disorder: a nationwide population-based study. The Lancet Psychiatry, 2017 DOI: 10.1016/S2215-0366(17)30394-2

Special Ed Program an Unconstitutional ‘Dumping Ground,’ Suit Claims

From the Atlanta Journal-Constitution/TNS
via DisabilityScoop

By Alan Judd
The Atlanta Journal-Constitution/TNS

October 16, 2017

Georgia uses its unique network of psychoeducational schools as a “dumping ground” for unwanted students with disabilities, a new class-action lawsuit claims.

A class-action lawsuit brought by parents and advocates is accusing Georgia of
relegating students with disabilities to separate, unequal schooling. (Shutterstock)

The suit, filed this month by several advocacy groups on behalf of three parents, accuses state officials of violating federal law and the U.S. Constitution by placing children with disabilities in segregated schools and classrooms operated by the Georgia Network for Educational and Therapeutic Support, or GNETS.

Each year, the lawsuit claims, Georgia relegates thousands of students with disabilities to “a network of unequal and separate institutions and classrooms,” the only one of its kind. Those students, the suit says, “are denied the opportunity to be educated in classrooms with their non-disabled peers.”

Citing a 2016 investigation by The Atlanta Journal-Constitution, the suit claims that by assigning a disproportionately high number of African-American children to GNETS, the state violates Fourteenth Amendment guarantees of equal protection under the law. The suit also alleges the state disregards its own regulations that restrict GNETS to students who cannot be educated elsewhere.

“GNETS are not placements of the last resort but instead are ‘dumping grounds’ … for students whom local school districts do not want to educate,” the suit alleges.

Through a spokeswoman for the Georgia Department of Education, state officials declined to comment.

The lawsuit, filed in the U.S. District Court in Atlanta, largely tracks a 2016 case in which the federal government claims Georgia illegally segregates students with disabilities. More than a year of negotiations failed to produce a settlement, and now the state says the Justice Department lacks the authority to enforce laws granting civil rights to people with disabilities. The case is on hold indefinitely while a federal appeals court considers the state’s arguments.

The class-action case will help ensure that GNETS complaints receive a hearing even if the Justice Department loses its appeal — or if the department de-emphasizes civil-rights enforcement.

“This is definitely a way to get our hands on the rudder,” said Leslie Lipson, a lawyer with the Georgia Advocacy Office, which filed the suit along with the Center for Public Representation, the Bazelon Center for Mental Health Law and The Arc. Attorneys from the Goodmark Law Firm in Atlanta and DLA Piper in Boston also are involved in the case.

The lawsuit alleges GNETS students receive an inferior education and are often denied extracurricular activities and such basic amenities as science labs, libraries and gymnasiums. The graduation rate for GNETS students is 10 percent, the suit says, far below the statewide rate of 78 percent.

All the students named in the lawsuit allegedly suffered academic and physical injury in GNETS.

“Q.H.,” a 9-year-old boy with autism, attention deficit disorder and developmental delays, has been physically restrained numerous times, the suit says. On at least one occasion, he received injuries requiring medical treatment.

“C.S.,” 13, entered a GNETS program five years ago after his home school told his parents it was the boy’s only option. In the sixth grade, the suit says, he spent much of the school year lying on a classroom floor, watching videos, receiving no therapy for his autism.

“R.F.,” also 13, was assigned to GNETS in December 2014 because of his mood disorders. After staff members restrained him numerous times, causing physical injury, his mother removed him from the GNETS program. But the school system told her the boy either could attend GNETS or no school at all, the suit says. The mother finally got her son readmitted to a regular school this year.

But now the boy receives no therapy for behavioral issues, the suit says — and he is at risk of being reassigned to GNETS.

Sunday, October 22, 2017

20 Best Value Colleges for Students with Learning Disabilities 2017-2018

From BestValueSchools

October 16, 2017

Managing learning disabilities in college represents a unique challenge – for both the students who have them and the schools that want to help.

And, while colleges and universities in the United States are required by law to offer certain services for students with disabilities, these services only guarantee the bare minimum regarding academic assistance and accommodations.

Fortunately, there are a few schools that have gone above and beyond that minimum threshold. These colleges provide specialized support programs for young adults who have the potential to succeed academically, but who may face cognitive obstacles like dyslexia, dysgraphia, or dyscalculia; language or auditory processing disorder; Asperger’s Syndrome or autism; or related issues such as ADD/ADHD.

(You can learn more about the types of learning disorders here).

Students with physical disabilities or chronic medical conditions may also experience cognitive impairment and require some extra academic support to succeed.

Thanks to the unique opportunities available at these colleges, hardworking students can overcome many of the challenges their learning differences create and gain the skills – and degree credentials – they need to achieve their personal and professional goals.

The 20 Best Value Colleges for Learning Disabilities Ranking Methodology

How do you pinpoint the schools with the best programs for learning disabled (LD) and special needs students? We started by searching the National Center for Education Statistics (NCES) IPED database for the colleges that attract an unusually large number of students with disabilities. More specifically, we only considered schools at which more than 5% of undergraduates are formally registered with the office of disability services.

From that point, one of the main factors we considered in our ranking was the actual percentage of undergraduate students at the college who have learning disabilities. In the list below, the values range from 7-100%!

However, just because a program is popular with LD individuals doesn’t mean its services are necessarily successful. Therefore, we also considered each school’s overall undergraduate graduation rate (a measure of success for all undergrads, not just those with unique learning needs).

And, to pinpoint the programs that offer the most individual attention and a supportive academic environment at every stage of learning, we looked at each college’s student-to-faculty ratio. We acquired both of these statistics from the NCES’ College Navigator database.

Once we had obtained a short-list of potential top programs, we researched each college individually to assess the types of services they provide for students with learning disabilities. We considered both the range of available services as well as any particularly unique resources and opportunities that benefit LD undergrads.

The result of our research was this ranking of the 20 top colleges for students with learning disabilities. While everyone – especially LD individuals – has unique academic strengths and opportunities, we believe that this list represents the overall best schools for catering to those individual needs.

The cost of this learning disabilities college program is just $4500
for one year (on top of tuition and room/board).

20.) American University
Washington, DC
Learning Services Program (LSP)


American University offers a one-year Learning Services Program (LSP) designed specifically for first-year students struggling with learning disabilities in college. Freshmen who join LSP benefit from weekly meetings with an academic counselor, one-on-one course advising sessions, and regular lessons with a writing tutor. LSP members also take a special introductory writing course and receive guidance from an upper-class mentor.

By the end of the year, program participants will have developed effective study habits and strategies that they can carry with them throughout their time at American. And while sophomores and upperclassmen can’t join LSP, they can still get plenty of help through the school’s general Academic Support & Access Center.

Net Price: $34,812/year

One of the top colleges for students with learning disabilities, Franklin Pierce offers
$1000 renewable scholarships to students enrolled in the Center Scholar program.

19.) Franklin Pierce University
Rindge, NH
Center Scholar Program


The Center of Academic Excellence at Franklin Pierce University supports a unique initiative known as the Center Scholar program. This program is open to select undergrads who have the capacity to succeed in college but may struggle with specific issues, such as a learning disability.

Center Scholars in their first year at Franklin Pierce meet regularly with tutors and learning specialists as they adjust to college-level courses. They also have access to special workshops that address issues like time management and provide information about campus resources. And although it’s primarily a one-year program, returning sophomores can serve as “Center Mentors” to share their experience dealing with learning disabilities in college with incoming freshmen.

Net Price: $28,363/year

FASP offers support through peer tutoring, learning skills workshops, and writing
assistance, making King one of the top colleges for students with disabilities.

18.) King’s College
Wilkes-Barre, PA
First Year Academic Studies Program (FASP)


King’s College provides yet another high-quality option for individuals looking for a learning disabilities college program that emphasizes support in the first year of study. Appropriately called the “First Year Academic Studies Program” (FASP), this initiative’s primary goal is to help smooth the transition to college life for freshmen students. Undergraduates in FASP can choose from two levels of support.

Students on the “Tier 1” receive more intensive support, including three meetings per week with a learning specialist to help them build cognitive skills, independence, and self-confidence. “Tier 2,” which is open to sophomores and transfers, offers similar resources but at a lower level of intensity (only 20 sessions with a learning specialist per semester).

Net Price: $25,241/year

With a net price below $20k/year, Muskingum is one of the more
affordable colleges for students with learning disabilities.

17.) Muskingum University
New Concord, OH
PLUS Program


Founded in the early 1980s, Muskingum University’s PLUS Program for students with learning disabilities in college is one of the oldest on this ranking. That also means the university has nearly 40 years of experience in providing specialized support to undergraduates with atypical learning needs. All this expertise has shaped the PLUS program’s philosophy over time, which today emphasizes the development of life-long learning skills, self-direction, and a sense of responsibility for managing individual needs.

Note that graduation requirements are the same for learning disabled students as for all other undergrads. However, the PLUS Program encourages its members to take a lighter course load and apply for accommodations like extended test time and extensions on homework assignments.

Net Price: $19,005/year

Already one of the more affordable colleges for learning disabilities,
MC also offers a scholarship/academic assistance program
for economically-disadvantaged students.

16.) Manhattanville College
Purchase, NY
Higher Education Learning Program (HELP)


Unlike some of the other colleges for learning disabilities on this ranking, Manhattanville College doesn’t confine its services to a single program. Rather, it takes a multi-pronged approach that ensures students with diverse cognitive challenges get exactly the help they need. The most general of these initiatives is the Higher Education Learning Program (HELP), which is open to any MC student with a documented disability. HELP provides three hours of individualized tutoring each week, and sessions may cover skill development (e.g. organizational, reading/writing, or general study skills) or subject/content lessons. And just in 2015, Manhattanville launched a second, more specialized program known as Pathways and Connections (PAC) that specifically caters to the needs of undergrads with ASD.

Net Price: $23,838/year

Although Marist isn’t the most affordable college for students with disabilities
by tuition rate, it only charges one additional fee for its Learning Support Program.

15.) Marist College
Poughkeepsie, NY
Learning Support Program


Like Muskingum University, Marist has been operating its learning disabilities college program for nearly 40 years. First established in the early 1980s (after more than a decade of enrolling students with diverse educational needs), Marist’s Learning Support Program offers individual counseling on issues like time management, note-taking, and organizational strategies. It also facilitates accommodations for undergrads who need assistive technology or modified testing conditions.

Also, the program also promotes independence and encourages members to advocate for their own needs on a continual basis. And considering it has a 10% enrollment rate of undergrads with disabilities and a graduation rate of almost 80%, it’s safe to say that Marist is successful in its goals – as are its students!

Net Price: $35,586/year

An assistive technology lab stocked with software like Dragon NaturallySpeaking
helps solidify WSU’s standing as a top college for students with learning disabilities.

14.) Westfield State University
Westfield, MA
Learning Disabilities Program


Westfield State University offers two distinct programs that benefit learning disabled and special needs students. The more intensive and specialized option, appropriately called the Learning Disabilities Program, is open to applicants with a diagnosed learning- or ADHD-based disability who show potential to succeed in college-level courses.

Those who are admitted to this learning disabilities college program unlock benefits like priority course registration, academic progress monitoring, and individualized advising. They can also get assistance on everything from academic skill development and executive functioning to methods of self-advocacy. As a separate initiative, WSU also supports a robust peer-tutoring program that is open to all undergrads.

Net Price: $15,203/year

Thanks to an 8% enrollment rate of learning-disabled students and a sub-$20k
price, WVWC is one of the best, most affordable colleges for learning disabilities.

13.) West Virginia Wesleyan College
Buckhannon, WV
The Learning Center


Students with unconventional learning styles can find all the help they could possibly need at West Virginia Wesleyan College. Through the school’s Learning Center, individuals with special academic needs can access “centralized and comprehensive programming” that includes one-on-one professional tutoring, academic counseling for goal-setting and organizational skills, and special classes that utilize the Lindamood-Bell approach (a technique for addressing difficulties in math, reading, writing, and cognitive processing).

But what sets WVWC apart from other top colleges for students with learning disabilities is its Mentor Advantage Program, which provides several hours per week of organizational and “strategic content” academic counseling plus daily check-ins with a professional tutor.

Net Price: $18,521/year

In the final stage of Ursuline’s learning disabilities college program,
seniors develop a “final transition plan” and receive guidance
on accommodations in the workplace.

12.) Ursuline College
Pepper Pike, OH
FOCUS Program


Ursuline College’s FOCUS Program serves as a much-needed support system for undergraduates with learning disabilities and ADHD. The goal of FOCUS is to help participants develop strategies that will make them better able to learn independently. To this end, the program utilizes a multi-phase approach similar to many other top colleges for students with disabilities.

At the highest level of support, freshmen will meet with a disability specialist three times per week and receive regular progress reports from their professors. They’ll also benefit from additional course advising and priority registration. As time goes on, students graduate to greater levels of independence, receiving fewer monitoring reports and meeting with a specialist less often.

Net Price: $15,034/year

Hofstra students struggling with learning disabilities in college can sign up for
optional, individualized academic coaching to improve their study habits

11.) Hofstra University

Hempstead, NY
The Program for Academic Learning Skills (PALS)


Hofstra University’s Program for Academic Learning Skills (PALS) is more than thirty years old, leaving little doubt that this college is highly experienced in LD education. Learning disabled and ADD/ADHD students who enroll in PALS pay a one-time fee that guarantees them access to a learning specialist from orientation through graduation.

In fact, PALS requires participants to make at least a one-year commitment to maximize their chances of academic success. And while these features alone would secure Hofstra’s reputation as one of the best colleges for students with learning disabilities, the University goes even further by offering one-on-one academic coaching on topics ranging from test-taking strategies to learning style awareness.

Net Price: $30,459/year

Knowing the difficulty of dealing with learning disabilities in college, Westminster
offers extra accommodations like modified housing and access to quiet study areas.

10.) Westminster College
Fulton, MO
Learning Difference Program (LDP)


Of the nearly 10% of Westminster undergrads who are formally registered with the school’s disability services center, about half participate in the Learning Differences Program (LDP). Ideal for individuals with neurodevelopmental disorders such as ADHD, dyslexia, and Disorder of Written Expression, the LDP provides extensive support services that help LD students realize their academic potential.

Of course, as one of the best colleges for learning disabilities, Westminster’s program has all the standard features, like one-on-one advising and accommodations (e.g. note-taking and extended time on tests). But what sets this program apart from the pack is that it also offers supplemental courses in core areas – like the humanities and natural sciences – that are specifically designed to promote effective study habits.

Net Price: $20,473/year

To help mitigate the obstacles associated with learning disabilities in college,
REACH requires all freshmen to participate in special “learning community” courses.

9.) College of Charleston
Charleston, SC
REACH Program


The goal of the REACH Program at the College of Charleston is to provide learning disabled students – as well as those with mild developmental disabilities – with a traditional and enjoyable experience on campus. REACH members live in dorms with other students, attend regular classes, and can participate in all campus activities and clubs. At the same time, this affordable college for students with disabilities offers special REACH courses in topics like “Writing Comprehension,” “Interpersonal Communication,” and “Career Exploration.”

Undergrads with certain emotional/social impairments (such as those with autism spectrum disorder or ASD) can also take advantage of social skills training workshops and will have access to a “social mentor” who will help them meet and get to know other students.

Net Price: $18,677/year

On top of everything else, Curry College also offers a learning disabilities
college program specifically for multilingual and international students.

8.) Curry College
Milton, MA
Program for Advancement of Learning (PAL)


When it comes to helping students with learning disabilities succeed, Curry College takes a proactive approach. It all starts with Summer PAL, a transition program for incoming freshmen to help them develop effective learning habits, self-understanding, and self-confidence before the fall semester begins.

During the year, members of the PAL learning disabilities college program continue to receive support through individual and small group course options that focus on functional tasks – like time management and organization – as well as skills like reading and language comprehension.

PAL members also have the option to join a designated living learning community (LLC) or participate in a PAL cohort with other learning disabled students who share similar interests/majors.

Net Price: $31,104/year

Students eager to learn about how to deal with their learning disabilities in college
can enroll in an abbreviated summer version of the Learning Excellence program.

7.) High Point University
High Point, NC
Learning Excellence


At High Point University, students with unconventional learning needs can get the help they need not just to survive college, but to achieve “extraordinary academic excellence.” Although the “Learning Excellence” program is open to any undergraduate who wants to improve their study habits, individuals with cognitive impairments such as ADD/ADHD perhaps stand the most to gain from its services.

From weekly meetings with a learning specialist to required study hall sessions, this program sends a clear message about what makes High Point one of the best colleges for students with disabilities. What’s more, LE participants benefit from targeted tutoring sessions in specific skill areas (e.g. reading and math) as well as their course content.

Net Price: $36,927/year

As far as learning disabilities college programs go, Lesley’s Threshold
Program is easily one of the most comprehensive and supportive available.

6.) Lesley University
Cambridge, MA
The Threshold Program


Lesley University’s innovative Threshold Program goes well beyond the standard services that most of the top colleges for students with disabilities offer. Forget personalized tutoring – Threshold is a truly comprehensive, two-year program that tailors every aspect of the college experience to individuals with “special needs and diverse learning challenges.” Most importantly, the curriculum emphasizes the skills necessary to get a job and live independently.

As such, the program limits members to one of just two majors – Early Childhood Education or Business Services – to maximize their chances of success. Upon graduating from Threshold, most participants complete either a post-grad “Transition Year” (focusing on paid employment) or a “Bridge Year” for continuing undergrads to live on campus and pursue internships.

Net Price: $30,940/year

The IAL has become a leader in LD education in part by recognizing
that there is no “one-size-fits-all” approach to helping
students with learning disabilities in college.

5.) Lynn University
Boca Raton, FL
Institute for Achievement and Learning


Why are approximately one in four undergraduates at Lynn enrolled in disability services? It might have something to do with the school’s Institute for Achievement and Learning (IAL), a recognized leader in academic support and “enhanced learning experiences” for college students. And although it’s hardly the most affordable college for students with learning disabilities, Lynn University’s IAL is long on value.

In the first year of the program (which is mandatory), undergrads build a strong foundation through specialized academic tutoring and coaching, personalized tutoring and writing help, and diagnostic assessments if needed. In subsequent years, IAL participants shift their focus away from intensive skill development and more toward self-advocacy, school-life balance, and problem-solving strategies.

Net Price: $36,880/year

Dean University is one of the top colleges for learning disabilities such as ADD
and dyslexia as well as sensory processing and executive function disorders.

4.) Dean College
Franklin, MA
Arch Learning Community


Without a doubt, Dean University offers one of the most innovative learning disabilities college programs on our ranking. This is because the school structures its program as a “learning community,” thus providing a more intimate environment and closer level of support than many other colleges. LD students who are admitted to the Arch Learning Community benefit from both individual and group academic coaching as well as personalized course advising.

What’s more, ALC undergrads participate in weekly seminars and can enroll in smaller-than-average courses. And of course, Dean also utilizes the popular step-down approach that encourages ALC participants to develop independence over time.

Net Price: $27,417/year

Out of the top 10 schools on our ranking, Mitchell is one of
the most affordable colleges for students with disabilities.

3.) Mitchell College
New London, CT
The Bentsen Learning Center


Given that more than a third of its undergraduates have a registered disability, it’s safe to say that Mitchell is one of the most popular colleges for students with learning disabilities in the entire country. And it’s not hard to see why. Indeed, Mitchell’s Bentsen Learning Center provides nearly unparalleled support for undergraduates with unique learning differences and attention deficit disorders.

Services include targeted instruction in various learning strategies, designated study areas for BLC members, and content workshops to improve understanding and build good study habits. On top of all this, program participants receive individualized support from an assigned learning specialist with expertise in organization, comprehension, memory, time management, test prep, and much more.

Net Price: $27,223/year

Landmark is one of the best colleges for students with disabilities like
dyslexia, ADHD, autism, and language processing disorder.

2.) Landmark College
Putney, VT
Landmark College


Obviously, all of the schools on this list offer some sort of learning disabilities college program for students who need extra academic support. But Landmark doesn’t just offer a single program; rather, the entire school is wholly dedicated to undergraduate education for those who learn a little differently.

Academic resources include everything from executive function coaching to assistive technology, while students with ASD benefit from targeted support like the “Social Groups Cluster,” which is designed to help with social interactions and anxiety issues. Landmark also offers a “Bridge Semester” that can help new/transfer students better understand their learning styles and improve their study habits before applying/returning to a traditional college.

Net Price: $36,984/year

Beacon, one of the top colleges for learning disabilities, utilizes teaching
methods that emphasize the development of critical thinking skills.

1.) Beacon College
Leesburg, FL
Beacon College


When it comes to the best colleges for students with learning disabilities, none holds a candle to Beacon College. As the first accredited school in the nation to cater exclusively to undergraduates with learning differences (including ADHD and dyslexia), Beacon is in a class all by itself.

To help each student make the most of their college experience, Beacon emphasizes highly individualized course plans and plenty of one-on-one support. In addition to small class sizes and assistive technology, learning disabled individuals can also benefit from academic mentoring, peer tutoring, and even life coaching.

Net Price: $38,054/year

Trump Administration Rescinds Special Ed Guidance

From DisabilityScoop

By Michelle Diament
October 20, 2017

The U.S. Department of Education is withdrawing dozens of guidance documents addressing everything from transition to due process as part of a Trump administration effort to do away with unnecessary regulation.

The U.S. Department of Education has determined that 72 guidance documents relating
to special education are "outdated, unnecessary or ineffective." (Anne Meadows/Flickr)

The Education Department said Friday that it has rescinded 72 guidance documents — 63 from the Office of Special Education Programs and nine from the Rehabilitation Services Administration — some of which have been on record for decades.

The move comes as the agency works to follow through on an executive order signed by President Donald Trump in February requiring the federal government to “to alleviate unnecessary regulatory burdens.”

Over the summer, the Education Department sought public comment on “regulations that may be appropriate for repeal, replacement or modification.” Now, officials with the agency’s Office of Special Education Programs said they are working in phases to comply with the order.

“The first phase involved reviewing guidance that OSERS has published on the Individuals with Disabilities Education Act (IDEA), and the Rehabilitation Act of 1973 (Rehab. Act), as amended,” said Kimberly M. Richey, acting assistant secretary of special education and rehabilitative services, in a statement announcing the decision to withdraw numerous guidance documents.

“Initially, we evaluated the guidance to determine those that were outdated, unnecessary or ineffective.”

Guidance documents flagged by the review touch on special education funding, least restrictive environment, private placements, employment and more. Some were issued as recently as 2014 while others have been around since the 1980s.

Policy guidance, often issued in the form of a “Dear Colleague” letter, is typically used by the Education Department to clarify how existing laws or regulations should be implemented in schools.

In comments submitted to the Education Department in recent months, disability advocates broadly opposed the Trump administration’s plan to pare down regulations and guidance.

“The IDEA regulations and guidance identified by the Regulatory Reform Task Force for possible repeal, replacement or modification have been established through a comprehensive process as prescribed by the Administrative Procedure Act,” wrote Mikki Garcia, president of the Council for Exceptional Children, in comments to the federal agency. “The evaluation of existing regulations and guidance for the purpose of repeal, replacement or modification is unconventional and ill-advised.”

On Friday, multiple disability advocacy groups said they were still examining the rescinded guidance documents to assess what the impact could be on students and their families.

Saturday, October 21, 2017

Unmasking Anxiety in Autism

From Spectrum News

By Jessica Wright
October 4, 2017

Anxiety can assume unusual forms in people with autism — turning uncertainty, or even a striped couch, into a constant worry. New tools may help identify these hidden fears.

No one except Gregory Kapothanasis knows exactly what upset him today. On this hot day in July, he went to his day program for adults with developmental disabilities, as he has done without incident five days a week for the past four years. But then things unraveled.

According to the program’s report, he grabbed a staff member’s arm hard enough to bruise it. Then, on the bus during the daily outing, he started screaming and hitting his seat. Now, several hours later, he is finally home, but there is a stranger in his living room. Bouncing from one couch to another, clutching a faded beige blanket stolen from his aunt’s dog, Kapothanasis still seems out of sorts.

His mother, Irene — who has cared for him, with the help of home aides, for all of his 24 years — is playing over the day’s events, trying to figure out what triggered him. His outburst is disturbingly reminiscent of a difficult period that peaked six years ago but is uncharacteristic of the young man today.

Kapothanasis loves interacting with other people, going to the beach and dining at DiMillo’s, a floating restaurant in a decommissioned car ferry in Portland, Maine.

Kapothanasis has autism and speaks only a few words: He can’t explain what happened this morning. Did he have constipation and discomfort, as his doctor suggested? Did he get bored of the day’s program, causing him to act out? Had something occurred on the bus previously that made him fear that part of his day? All his mother can do is wonder — and try to make his evening better.

Kapothanasis places several pieces of gum in his mouth, something his mother says soothes him. Then he curls up for a nap and dozes off. The time it takes him to calm down is short compared with the protracted meltdowns that routinely overtook him during his teen years.

He became aggressive starting in puberty: He would bite and hit himself, or hit and grab other students, teachers and bus drivers. His mother had to supervise his interactions with his siblings, even though, as triplets, they had always been close. In December 2011, when he was 18 years old and over 6 feet tall, his behaviors had escalated so much that his school enrolled him at the inpatient clinic at Spring Harbor Hospital in Maine.

“Look, we all have scars from Gregory, we’ve all felt his wrath. And it came to the point where he had to be institutionalized,” his mother says. He spent five long weeks at the hospital. “It was probably one of the darkest moments in our lives,” she says.

When Kapothanasis arrived at the hospital, he didn’t seem sad, cried only on occasion and didn’t respond to things not visible to others — signs he did not have depression or psychosis. But he startled easily, paced and rocked in place, and sweated heavily. “The phrase ‘cat on a hot tin roof’ was pretty descriptive,” recalls Matthew Siegel, director of the developmental disorders program at the hospital.

After several weeks of close observation, Siegel and his colleagues managed to piece together Kapothanasis’ behaviors into a clear diagnosis, based on criteria outlined in the “Diagnostic and Statistical Manual of Mental Disorders.” In addition to his autism, “he was kind of screaming anxiety — if you’re looking for it,” Siegel says. Until then, it seems no one had been.

When Kapothanasis entered the clinic, he was on his third antipsychotic medication. Some are approved to treat aggression as a feature of autism, but none treat anxiety. “It’s fair to say that he was not being treated for anxiety,” Siegel says.

There are many reasons it took nearly six years for Kapothanasis to get the help he needed. Doctors may have assumed that his aggression and tendency to hurt himself were part of his autism, Siegel says. Traits that characterize autism — including social deficits, stereotyped movements and restricted interests — can mask or mimic symptoms of anxiety.

During a visit to an outpatient clinic, for example, Siegel points out a nonverbal young woman with autism who repeatedly traces a pattern in the air with her hands. At first glance, her gestures resemble ‘stimming,’ the repetitive behaviors often seen in autism. But she does it at specific times, Siegel says, suggesting a ritual related to obsessive-compulsive disorder — a form of anxiety.

Compounding the problem, many people on the spectrum, like Kapothanasis, cannot tell their caregivers or doctors what they are feeling or thinking. Those who can may still struggle to identify and understand their own emotions — a phenomenon called alexithymia — or to articulate them to others. Because of these factors, the clinical questionnaires designed to ferret out anxiety traits in neurotypical individuals are woefully inadequate for many people with autism.

The tests may also miss children with autism, who can have unusual phobias, such as a fear of striped couches or exposed pipes.

“People on the spectrum have really unique, distinct ways of perceiving the world, and also have distinct experiences, which is why we’ll see classic things like social phobia and generalized anxiety, but also maybe these more distinct, more autism-related manifestations,” says psychologist Connor Kerns, assistant research professor at the A.J. Drexel Autism Institute in Philadelphia.

Kerns and others are working on new ways to measure both ordinary and unusual forms of anxiety in people with autism. This work could help clinicians better detect the anxiety that hides behind autism, reveal the underlying mechanisms and lead to better treatment.

“We have more to offer the treatment of anxiety right now than we have for the core features of autism.”
-- Lawrence Scahill

Hiding in Plain Sight

Anxiety may seem to be a prominent feature of autism, but it is not one of the diagnostic criteria. “People say, ‘Oh, it’s just part of autism, everyone with autism has anxiety.’ That is 100 percent not true,” Siegel says. “I’ve got 12 kids sitting outside my door at my hospital right now, and several of them do not have anxiety.”

Studies attempting to pin down the proportion of people with autism who also have clinically significant anxiety have produced a staggeringly broad range, from 11 to 84 percent. The discrepancy in these reported rates is “fundamentally unbelievable,” says Lawrence Scahill, professor of pediatrics at Emory University in Atlanta.

“Whenever you see a range like that, you know that it’s driven by the source of the sample, where they got the sample from, the methods used to do the assessment and how quick they were to pull the trigger on a diagnosis.”

What is believable, he says, is that autism and anxiety are not independent conditions that sometimes co-occur. In fact, children with autism may be inherently more likely to develop anxiety than their typical peers. But the overlap in features between the two conditions makes diagnosing anxiety extremely difficult. “I’m convinced that the measurement of anxiety in children with autism has to be different,” Scahill says.

The traditional tests for anxiety, such as the Screen for Child Anxiety-Related Emotional Disorders and the Spence Children’s Anxiety Scale, rarely hold up as well in children with autism as they do in the groups they were designed for. In a 2013 study, Scahill and his colleagues investigated one particular test — the 20-item anxiety scale of the Child and Adolescent Symptom Inventory (CASI) — in parents of 415 children with autism.

How the researchers framed the test’s questions significantly affected how the parents responded. Less than 5 percent of the parents endorsed statements describing anxiety that require a child to express herself — for instance, “worries about physical health” or “complains about feeling sick when separation is expected.”

By contrast, parents were most likely to agree with statements that rely on their observations, such as “acts restless or edgy.” This trend was especially true among parents whose children have intellectual disability.

Based on their findings, Scahill and his colleagues decided to talk to parents as part of their efforts to develop a measure of anxiety specific to children with autism. Over the course of six focus groups, which yielded more than 600 pages of transcripts, the researchers interviewed the parents of 45 children who have both autism and anxiety. They encouraged the parents to describe their child’s behaviors rather than make inferences about what the child was thinking. They then used these observations to formulate 52 questions.

The trick to deciding which questions to ask, Scahill says, was not letting features of autism “leak” into them. Many parents talked about meltdowns but, when pressed for more detail, agreed they couldn’t tell the difference between meltdowns caused by anxiety and those that crop up for other reasons related to autism. Using meltdowns to flag anxiety in children with autism would have been a mistake, Scahill says.

Instead, the focus group responses pointed to new indicators, including “Gets stuck on what might go wrong” and “Needs a lot of reassurance that things will work out.”

In unpublished data, the researchers combined the 52 new questions with the 20 questions on the CASI and gave them to 990 parents of children with autism. Based on the responses, they weeded out 31 items that were either redundant, seemingly irrelevant or rarely endorsed by the parents.

Based on the remaining 41 queries, they found that roughly one-quarter of the children in the study have high levels of anxiety, another quarter have low levels of anxiety, and the rest fall somewhere in between.

The researchers plan to test whether the measure is reliable over time, evaluating the same children with 10-day breaks between sessions. If the screen proves reliable, Scahill says, it might also be used to assess the efficacy of anxiety treatments in children with autism.

“We have more to offer the treatment of anxiety right now than we have for the core features of autism,” he says. “So it behooves us, in my opinion, to be tough-minded about making sure we’re measuring anxiety and not something else.”

Into the Unknown

Erik Chaston, a 29-year-old graduate of Brigham Young University in Provo, Utah, works at a credit union, developing detailed workflows for the bank’s employees. Chaston, who has autism, has won awards for his clear and surprisingly entertaining videos that elucidate the supply-chain process. But for years, he was also fixated on the faint clicking noises people make with their saliva when they talk.

As a student, while working as a sound engineer for the campus sports channel, Chaston began obsessing over fixing these and other sounds in his recordings. “It made me feel like I was constantly worried about things, because everyone talks like this,” he says. He held it together and excelled at work, but would shut down around his family. After he graduated, the problem seeded fears about what kind of job he would be able to hold down. The uncertainty made him especially anxious, he recalls.

This intolerance of uncertainty is a common refrain among people with autism and their parents. For many people on the spectrum, this feeling may simply be an expression of one of autism’s core features — for instance, it may relate to inflexibility in the need to have enough time for a special interest or a fixation. But if that fixation turns into a source of constant fear or worry, it may in fact be an expression of anxiety, researchers say.

“To me, it makes a lot of sense that it’s something about the sticky element of the brains of people on the spectrum that would also lead them to have anxiety about change,” Kerns says.

In 2014, Kerns and her colleagues developed an adapted version of the Anxiety Disorders Interview Schedule (ADIS) — a one- to two-hour clinical interview with both parents and children, designed to flag anxiety. Based on interviews with 59 children who have autism and their parents, the researchers documented examples of anxiety that don’t fit the standard definition. Although nearly half of the children had traditional forms of anxiety, 18 of them also showed signs of non-traditional anxiety; another 9 children showed only the unusual forms of anxiety, such as an intolerance of uncertainty.

So Kerns and her colleagues expanded their ‘ASD-specific addendum’ to flag non-traditional anxiety traits that the standard screen might miss: fear of novelty or uncertainty; fear of social situations for reasons other than social ridicule; excessive worry about being able to engage in a special interest; and unusual phobias. The section on fearing change asks, for example, “Does your child react if the change is positive (e.g., getting out of school early)?”

The addendum also includes questions about a child’s social skills, sensory sensitivities and repetitive behaviors to help clinicians differentiate anxiety from autism features. For instance, it asks about a child’s history with bullying or social rejection to clarify whether a child is avoiding social events for a good reason — because her bully might attend — or because she is so traumatized by bullying that she fears any social outing. Only the latter would qualify as anxiety.

“We want to look for when anxiety has overgrown the actual threat,” Kerns says. Her work solidifies what many clinicians knew anecdotally. “[Kerns] put a description to something that we had been seeing but didn’t have a word for,” Siegel says.

Why a fear of the unknown is a strong feature of autism is less clear. Some researchers speculate that people with autism have trouble predicting future events, heightening their sense of uncertainty. Other work implicates sensory sensitivities and poor verbal comprehension, suggesting that different aspects of autism feed into this type of anxiety.

Scientists are also looking for less subjective ways to measure anxiety in autism using various physiological and brain-imaging methods. John Herrington at the Children’s Hospital of Philadelphia and his colleagues are in the midst of a long-term study of 150 children, roughly half of whom have autism, looking at measures of stress, such as heart rate variability and sweat levels.

They are also using a technology that tracks where someone is looking to try to distinguish a lack of social interest from social anxiety. Initial findings from their brain-imaging data suggest that the amygdala, a brain region involved in making fearful associations, is smaller in children with autism and anxiety than in those with autism alone.

Another team is also homing in on the amygdala. Mikle South’s team at Brigham Young University is exploring the theory that instead of having an overactive fear response, people with autism have trouble finding a ‘safe space’ and, as a result, are afraid of everything. To test that idea, he is interviewing some adults with autism about their specific fears and scanning others’ brains.

More than half of the people he talks to are consumed with worry, he says. “They worry about so much all of the time, they worry about everything,” South says. “There’s nothing they’re not worrying about.”

“We see social phobia and generalized anxiety, but also more distinct autism-related manifestations.”
-- Connor Kerns

Confronting Fears

Breaking the cycle of fear is never easy, but it may be especially difficult for someone with autism. For Chaston, help came from what he considered an unexpected source — a self-help book on mindfulness that his mother foisted on him. Practicing mindfulness helped him develop strategies to deal with things that annoyed him.

The best-documented approach for treating anxiety in children with autism, cognitive behavioral therapy (CBT), works on similar principles. CBT combines talk therapy with repeated exposures to the source of the fear to change unhelpful thought patterns and behaviors.

That said, many children with autism may not benefit from traditional forms of CBT, says Eric Storch, professor of psychology at the University of South Florida in Tampa. Storch’s team has found that children with autism who benefit from CBT do not always maintain those gains: Those who improve only a little sometimes do much better one to two years later, whereas some of those who respond well later relapse.

“It wasn’t sticking the way we would predict,” Storch says. The findings suggest that children with autism need therapy for longer, and with more follow-up, than their typical peers — “a critical difference in the treatment approach,” he says.

Children with autism also have trouble generalizing lessons learned in therapy to other aspects of their lives. That means it is especially important to include their caregivers in treatment, because these adults can reinforce the lessons throughout the child’s day, Storch says.

To incorporate some of this extra support, a team at the University of California, Los Angeles developed a modified version of CBT, called the Behavioral Interventions for Children with Autism. The revision recommends, for example, that doctors and parents help a child to master appropriate social behaviors before putting the child in a feared social situation. Confronting situations that make the child anxious is crucial to the therapy’s success, Storch says.

The modification also offers extra help for children who may feel socially isolated, having therapists work with schools to give these children peers who can guide them through social situations.

A small 2009 trial suggested that anxiety levels in most children with autism abate after they receive this modified version of CBT. A follow-up analysis found that another version of CBT adjusted for adolescents with autism is just as effective. A team of researchers, including Storch and Kerns, plans to compare the modified version with other therapies in children with autism in a 16-week trial of 180 children. Children who have autism and clinically diagnosed anxiety will receive either the modified or the traditional form of CBT, or will continue with whatever treatment they received before.

Their parents will also take the ADIS, along with Kerns’ addendum. It is possible that the children who have non-traditional anxiety will benefit the most from a modified treatment, Kerns says.

However successful, CBT cannot be the only option for children with autism, notes Roma Vasa, a child and adolescent psychiatrist at the Kennedy Krieger Institute in Baltimore. “There’s a lot of variability in how much they can really report on their internal experience and how connected they are with their thoughts and their feelings,” she says. “There needs to be more trials of effective medication to help these kids.”

There are no drugs approved for treating anxiety in autism. Last year, Vasa and her colleagues published a set of recommendations for clinicians who prescribe anxiety drugs to children on the spectrum. Among her guidelines: Raise doses slowly, as these drugs may exacerbate irritability.

In Kapothanasis’ case, drugs to treat his anxiety, including fluoxetine and guanfacine, turned out to be extremely helpful. Still, Siegel’s team didn’t rely on medications alone to treat him. They discovered that Kapothanasis had no real means of communicating. His aides at school had told his mother that he could, for example, ask for a bottle of water by handing over a drawing of it.

But the speech-language pathologists in the hospital realized he really had no idea how to use this picture-exchange system. They helped him learn a new system, in which he points to photos of things from his daily life rather than to cartoon depictions of them. They prepared a visual schedule that lets him know what to expect each day. And, perhaps most valuable, according to his mother, is that they found new ways for him to soothe himself: by bouncing on a yoga ball or running his hands through tubs of uncooked rice.

These tactics are ones that now, years later, can still turn a bad day around. When Kapothanasis wakes from his catnap, he ambles over to the kitchen and makes himself a snack. Back in the living room, he spots a blue fleece blanket his mother has laid out for him in front of the television, a plastic bowl filled with uncooked rice in the center.

As he walks over to the rice, the tension in the air thins palpably. Contorting his large body into a pretzel shape and leaning close to the blanket, Kapothanasis dumps out the container’s contents. Then, carefully placing the bowl in front of him, he scoops up handfuls of rice and lets them fall through his fingers in soft streams down his forehead. The grains tap out a staccato beat as they land in the bowl.

Once it is full, he empties the bowl and begins again. And again … and again. After a while, he looks up, faces the stranger in the room for the first time. And smiles.