April 2014



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Archive for April, 2014


The Autistic Self Advocacy Network is gearing up for the summer and is excited to share upcoming webinars with you. These webinars are trainings for self advocate group leaders.





April 22nd 1 pm PST / 4 pm EST
Strategies to Combat Media Misrepresentations
Often times, media will say negative things about people with disabilities that end up harming our community. This webinar will explore community organizing strategies and effective messaging to respond to negative portrayals and perspectives of people with disabilities.



April 29th 1 pm PST / 4 pm EST
What to Do When Your Allies Aren’t Really Your Allies 
This webinar will explore the roles for allies within self-advocacy organizations. The following questions will be addressed: What do we mean by ‘allyship?’ What are the roles of allies within self-advocacy organizations? What happens when ‘allies’ do not listen to our requests? Power dynamics and conflict resolution within self-advocacy groups and organizations. How do we ensure self-advocates voices and experiences are centralized?



Not too late to register! To sign up for the SPRING series, visit www.autisticadvocacy.org/2014webinars








May 13 at 1 pm PST / 4 pm EST
Project Coordination 101: Learning the Basics of Running an Effective Project
Self Advocacy groups can get funding by signing up to coordinate projects. This is often done by contracting with a funder to accomplish a certain task, like checking accessibility of polling places, hosting a training series, or holding focus groups. Groups have told us that they want to develop more project coordination skills. We will talk about how to run, staff, and organize a project. Topics include creating a project proposal, timeline, budget, how to implement your project plan, and strategies for overcoming challenges that may arise. 



June 10 at 1 pm PST / 4 pm EST 
Balancing Act: Delegation & Power Dyanmics within Groups
Self Advocates often try to do everything themselves, but we become more powerful when we can share responsibility and tasks. This webinar will examine how groups can practice delegation (assigning tasks to others) and talk about models of power sharing within groups.  These guidelines and techniques will help lead to more effective leadership skills, group management and group dynamics.



July 8 at 1 pm PST / 4 pm EST
Unveiling a New Resource for Self Advocates

Imagine if you had a book of interview questions, templates of acceptance / rejection letters, press releases, and more. ASAN is launching a book of templates and scripts self advocates can use in their work. We will unveil the book at our July 8th webinar and use different tactics, like roleplaying scenarios, to go over the book together. 



August 26 at 1 pm PST / 4 pm EST
Fantastic Facilitation: Leading Effective, Inclusive Meetings
Come learn important facilitation tips such as how to construct an effective agenda to stay on task and the creation of ground rules to ensure effective group management and participation. We will also talk about how to use meetings to advance an agenda (for example a meeting with a policymaker).  



To register, visit autisticadvocacy.org.


These webinars are open to Self Advocates across the country and are organized by ASAN’s Pacific Alliance on Disability Self-Advocacy project. ASAN thanks the Administration on Intellectual and Developmental Disabilities for funding our training series. 




Dear Readers,


Wishing you a very Happy Easter!


Very Best Wishes,




Jeff Krull, 24, and his mother, Nancy Stanley Van Dyke, both of Moneta, VA were photographed April 2 at Mercyhurst University in Erie. Krull is a sophomore graphic design major and is part of the Asperger Initiative at Mercyhurst, a program that offers a variety of support for students with autism spectrum disorders. MAGGIE PORTZLINE//ERIE TIMES-NEWS


Published: April 6, 2014 12:01 AM EST
Updated: April 5, 2014 7:58 PM EST


By ERICA ERWIN, Erie Times-News


On the theater stage, he shone.


He could become anybody, brash and bold, comfortable in his character’s skin. His delivery and timing? Perfect. It was easy to act like someone else.


Offstage, in real life, is where Jeff Krull’s challenges became apparent.


Diagnosed with Asperger’s syndrome, an autism spectrum disorder, Krull is intelligent — he was a good student in high school and earned a scholarship to a prestigious North Carolina university — but he sometimes struggles in social situations.


After not finding the support he needed at the North Carolina school, Krull eventually found his way to Mercyhurst University and A.I.M. — the Asperger Initiative at Mercyhurst, a unique program designed for students on the autism spectrum who face challenges in executive functioning and social interaction.


Now the 24-year-old is majoring in graphic design with a newfound sense of purpose and confidence. He recently was honored as the A.I.M. program’s most outstanding sophomore during a recognition event, part of the university’s celebration of Autism Awareness Month.


“I feel like I have people in my corner now,” Krull said. “I feel like I can accomplish getting a degree.”


Launched in 2008-09, the A.I.M. program promotes the development of self-advocacy and independent living skills to help foster academic and social growth in students. Recently released data from the U.S. Centers for Disease Control and Prevention show that the number of children in America diagnosed with an autism spectrum disorder has increased from 1 in 166 in 2000 to 1 in 68 in 2014.


The Mercyhurst program is one of the few tailored to help meet their needs.


“The untapped potential of these individual students is amazing,” said Dianne Rogers, who directs the Learning Differences Program at Mercyhurst and founded A.I.M.


Krull lives with some of the other students in the A.I.M. program in the Mercy Suites. There are socialization opportunities. And he meets weekly with A.I.M. program staff.


“It’s not like you can go off the grid,” said Krull’s mother, Nancy Stanley Van Dyke. “Everyone knows if you’re having a problem.”


The structure and support have helped Krull immensely, Van Dyke said. Watching him thrive over the past two years has been rewarding, she said.


“He’s been happy. He has goals, and he’s achieving them. He has aspirations,” Van Dyke said. “As a mother, what more can you want?


Read in Full:






POTSDAM – Stephen Shore, a professor with autism, will deliver this week’s lecture in Clarkson University’s David A. Walsh ‘67 Arts & Sciences Seminar Series at noon Wednesday in the Clarkson University Student Center Multi-Purpose Rooms.


Shore will deliver a presentation titled “Life on and Slightly to the Right of the Autism Spectrum: An Inside View to Success,” an autobiographical journey from the nonverbal days in which he relates his life to the many challenges facing people on the autism spectrum. Shore is an assistant professor in the Department Of Education at Adelphi University.


Diagnosed with “Atypical Development and strong autistic tendencies” and “too sick” for outpatient treatment, Shore was recommended for institutionalization. Nonverbal until four, and with much support from his parents, teachers, wife, and others, Shore is now a professor at Adelphi University, where his research focuses on matching best practice to the needs of people with autism.


In addition to working with children and talking about life on the autism spectrum, Shore presents and consults internationally on adult issues pertinent to education, relationships, employment, advocacy, and disclosure as discussed in his books Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome, Ask and Tell: Self-advocacy and Disclosure for People on the Autism Spectrum, the critically acclaimed Understanding Autism for Dummies, and the newly released DVD Living along the Autism Spectrum: “What it means to have Autism or Asperger Syndrome.”


President emeritus of the Asperger’s Association of New England and former board member of the Autism Society, Shore serves on the boards of the Asperger Syndrome and High Functioning Autism Association, the Autism Services Association, and other autism related organizations.


Join Shore in his autobiographical journey from the nonverbal days as he relates his life to the many challenges facing people on the autism spectrum.


Read in Full:


I live with autism and I’m grateful

Daniel Giles is a member of the Autism Future Leaders program. Source: Supplied


LET me tell you a bit about my life. I was diagnosed with autism when I was two-and-a-half years old. As a child, I had severe language delays and felt as if I was living behind a glass wall, as if my life was like a video that I starred in, but I had no control over.


My severe communication delay (as well as appearing to have an intellectual disability) meant I attended the Bendigo Special Developmental School for much of my primary school years.


But I graduated from there in grade 5 and attended the mainstream primary school. With the amazing support of my integration aide, teachers and family (who all wanted me to reach my full potential), I completed my secondary education through to year 12 before completing my Bachelor of Graphic Design (with Honours) at La Trobe University in Bendigo.


I now live independently and work as a freelance graphic designer, as well as working part-time as an in-house graphic designer and photographer for a local business in Bendigo.


I believe that what I have achieved shows what can be done when people living with autism are able to reach their potential. And that’s why Thursday’s official launch in Canberra of the world’s first Autism Co-operative Research Centre is so important.


Autism CRC is the world’s first national co-operative research program for Autism Spectrum Disorders. Government, universities, research centres and not-for-profit organisations will work towards solutions for people living with what is a complex and challenging condition.


How complex and how challenging? I am so grateful for my life but it is difficult sometimes. I have high anxiety levels while navigating the world around me, and that has impacted on my ability to manage clients. I’m also stressed easily by changes of plans, a busy environment or an overload of information.


So I’d like to see research done on what would benefit those of us on the autism spectrum, including research into educating people on the spectrum and preparing for transition and independent living. I’d also like to see research on helping with the management of meltdowns, providing quiet spaces in public venues and on business owners being better able to communicate with people on the spectrum.


I believe researching how employers could cater to the needs of people with autism should also be a high priority.


My biggest hope, though, is that the Autism CRC avoids research that focuses on eugenics and any potential of eliminating people with autism. Instead, it should be focusing on helping people on the spectrum become the best they can possibly be.


That is relevant given that autism can now be detected at one year of age or earlier, once the genetic code is identified, and that future research may lead to the prenatal identification of autism.


Read in Full:


Dane Spurrell with his mother, Diane Spurrell. — Telegram file photo


RNC officers breached regulations in Dane Spurrell case, ruling states


Two Royal Newfoundland Constabulary officers breached multiple RNC regulations when they arrested and detained an autistic teenager in 2009, according to an adjudicator’s decision released Mon­day.


Diane Spurrell filed the original complaint with the RNC Public Complaints Commission following the arrest of her then 18-year-old son, Dane, in Mount Pearl. He was accused of obstructing police officers, who mistakenly thought he was publicly intoxicated while walking home from a video store shortly after midnight on April 19, 2009.


Almost five years later, adjudicator John McGrath has found the two officers involved in the arrest guilty of breaching multiple RNC regulations.


“I think it’s a very fair decision,” Diane Spurrell told The Telegram Monday, the same day she received her copy of the decision. “I’m elated, absolutely elated to finally have it.”


Const. Lisa Harris — formerly known as Lisa Puddicombe — was the first officer to come in contact with Dane Spurrell that night. McGrath found her guilty of breaching five regulations.


Those breaches are for arresting and detaining Spurrell without sufficient cause, being discourteous towards him, neglecting to promptly and diligently perform officer duties, acting contrary to the RNC policy and procedures manual, and failing to obey RNC regulations, orders and rules concerning policy and procedure.


“We believe in this instance it wasn’t (Spurrell’s) ability to communicate that caused a lot of the problems herein,” McGrath wrote in the decision, “it was a combination of Constable Harris’ frustration believing she was being outwitted by Dane Spurrell, her failure to follow the RNC Policy and Procedures Manual and a significant lack of understanding of the provisions in that manual and ultimately her failure to allow a simple phone call to and with his mother that would have put a stop to the unnecessary turmoil that followed.”


Read in Full:



The Food and Drug Administration (FDA) is considering an important action that would ban the use of devices that use electric shock for behavior modification. This action has the potential to close the Judge Rotenberg Center, an institution in Massachusetts  which uses contingent electric shocks as a method of behavioral control. 


The United Nations Special Rapporteur on Torture has declared the use of electric shock as torture, and the U.S. Department of Justice initiated a civil rights investigation into the JRC’s practices. The JRC’s founder, Matthew Israel, was forced to resign after facing charges for destroying video evidence of abuses of the GED electric shock device. Contrary to the JRC’s claims, not only do students receive electric shocks for relatively minor behaviors such as standing up from a desk or swearing as well as for potentially dangerous behaviors, but severe self-injurious and destructive behaviors can be successfully treated using methods other than abuse and torture. In legislative hearings each year on legislation that would ban the shocks, professionals with expertise in developmental and intellectual disabilities testify about the ineffectiveness of electric shock and the myriad options for addressing problematic behavior other than electric shocking. There are no scientific, peer-reviewed studies that show any long-term efficacy of electric shock as a treatment, but there are documented cases of former JRC students receiving diagnoses of post-traumatic stress disorder after leaving the JRC.

We need to assure the FDA receives as much written testimony as possible regarding this issue. The deadline for submitting statements is this Monday, April 14th.

Your written statement can be any length and can contain any information you want – your opinion about the use of electric shock for behavior modification, other ways of supporting people who have dangerous or difficult behaviors, issues of ethics and rights, research, etc. All comments are important and welcome.

Comments can be received on or before April 14th, and can be submitted electronically by April 14th here.

Click on the link above and you will receive a form. You can type (or copy and paste) your statement there or upload a document. You can choose to give contact information or to submit anonymously.

Your statement must be received by April 14th.


There are millions of Americans with disabilities lacking adequate health care because of a lack of primary care providers who are properly trained to treat them. In 2000, Healthy People 2010 cautioned that “as a potentially underserved group, people with disabilities would be expected to experience disadvantages in health and well-being compared with the general population.” Unfortunately, that statement continues to be correct. In particular, people with intellectual and developmental disabilities (I/DD) remain subject to significant health care disparities.


Right now, people with ID/DD are not included in the federal government’s definition of Medically Underserved Populations (MUP). That is why it is very important that awareness of this issue be spread so that the Health Resources Services Administration can take action to include people with ID/DD in the MUP definition. Failing that, Congress should act to ensure this community’s inclusion in the official definition. By including people with I/DD in the federal definition of a Medically Underserved Population, people with intellectual and developmental disabilities will have access to better quality health care and better quality of life.


For more information, you can read ASAN’s policy brief here.


Thanks to generous support from:

Logo for the Special Hope Foundation



The Disability Rights Network of Pennsylvania has given us this important information about the Healthy PA 1115 Waiver. Healthy PA is the plan proposed by the state under the Affordable Care Act instead of expanding Medicaid. You will be able to submit your thoughts about Healthy PA before it is finalized. There are some serious concerns about what these changes will mean, so it is very important that your comments are included. We’ve given you some suggestions and guidelines for submitting comments below.


Last month, the Department of Public Welfare sent in the final version of Healthy PA to the Centers for Medicare and Medicaid Services. Healthy PA explains the Department’s plans to do two things. 


(1) To limit the current Medicaid program. 


(2) To give Medicaid to a group of uninsured adults ages 21 to 64. This group is anybody who makes less money than a level set by the government, and who would not be able to get Medicaid another way. You can see the Draft 1115 Waiver application here. 

It is important for the disability community to send in comments about Healthy PA to the Centers for Medicare and Medicaid Services. The last day to send in comments is Thursday, April 10, 2014 by 11:00 PM. There is more information about how to send in comments below.


There are a few main areas of concern that we would recommend including in your comments. These are:

  • *The Elimination of MAWD
  • * Caps on things; targeted examples: *Loss of access to LTSS (Long Term Supports and Services) for those 133%-250% of FPL because of the MAWD cut, which prevents those with LTSS needs from moving out of poverty. 
    • ~Durable medical equipment ($2.5k/year on high risk plan)
    • ~access to mental health care
  • *There are no caps on nursing home or institutional settings, which could push those whose needs exceed the caps into more restrictive settings.

It is important for the disability community to submit comments on Healthy PA. Written comments must be submitted to CMS by 11:00 PM on Thursday, April 10, 2014 Written comments may be submitted here or emailed to 1115DemoRequests@cms.hhs.gov.  CMS will review and post comments received, but will not respond to each individual comment. 


More information about Healthy PA can be found at the Disability Rights Network of Pennsylvania’s website here.




Questions or comments may be directed to Savannah Logsdon-Breakstone, at SBreakstone@autisticadvocacy.org.