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Want to make real community integration a reality in your state? 

 

Interested in learning how you can use the rule to improve services in your state?

 

The Autistic Self Advocacy Network, in partnership with NDRN, AUCD, NACDD and the Collaboration for the Promotion of Self-Determination, invite you to join us for a new Tuesday webinar series on the new Home and Community Based Services settings regulation. 


 
Learn how the new HCBS settings regulation will impact services in your state and how your advocacy can make the difference between integration and segregation for people with disabilities. Click here to register for our exciting upcoming webinar series. Tell your friends and spread the word! 

 

September 30th 1-2:30 PM EST

Topic: Introduction and overview of new CMS HCBS Settings Rule

 

In the aftermath of CMS’ recent regulation defining acceptable and unacceptable settings for Home and Community Based Services, states and stakeholders are now considering how to transition their service-provision systems into compliance with the new CMS requirements for greater integration. This webinar will provide an overview of the new regulation, placing particular emphasis on the role that state level advocates can play in influencing how it will be interpreted and implemented.

 

October 7 1-2:30 PM EST

Topic: The New HCBS Rule – How Does it Affect Housing for People with Disabilities?!

 

The new home and community-based service (HCBS) rule from the Centers for Medicaid & Medicare Services (CMS) states that “home and community-based settings do not include nursing facilities, institutions for mental diseases, intermediate care facilities for mentally retarded, hospitals, or any other locations that have the qualities of an institutional setting as determined by the Secretary.”  The new HCBS rule establishes specific qualities that a home must exhibit in order for a state to qualify for federal HCBS funding including being integrated in the community, supporting independence, involving individual choice, and protecting individuals from coercion and restraint. This webinar will walk through these specific requirements, the federal guidance, and a step by step analysis of changes that may need to occur in your state.  Speakers will also discuss how the rule aligns with and moves forward the mandate from Congress and the U.S. Supreme Court that states must design and deliver federally funded services in a manner that does not unduly isolate or segregate individuals with disabilities.

 

October 14th, 1-2:30 PM EST

Topic: Stakeholder Engagement and the HCBS Settings Rule – State and National Perspectives

 

The new home and community-based services (HCBS) will require significant changes to the Medicaid HCBS program. Such a large change to the program must include robust engagement with individuals with disabilities, their families, and other stakeholders. While the rule requires public comment, advocates are encouraging states to use that public comment period as the minimum, not the maximum, of public engagement. Come to this webinar to learn about how states are engaging stakeholders in the process and how state and national advocacy organizations are organizing to support stakeholders and states in the process.

 

October 21 1-2:30 PM EST

Topic: Employment/Day guidance

 

As CMS articulates a new standard for what will and will not constitute Home and Community Based Services, advocates and policymakers are paying close attention to the implication for day and employment services. Many expect that new regulation will have a profound impact on integration in day and employment activities. Join us to learn more about the potential impact and how to influence implementation relevant to employment and day services.

 

October 28 1-2:30 PM EST

Title: Enforcement and Monitoring of HCBS Rules

 

Topic: Presenters will discuss strategies for individuals to enforce HCBS rule requirements; and mechanisms for states to monitor compliance with the rules over the long term. Speakers will highlight potential areas where individuals may face issues in implementation of HCBS rules and available advocacy options, such as grievances or appeals. Examples may include: when assessments of need do not reflect the standard of integration reflected in the regulations; conflict of interest or provider qualification standards are not met; and managed care utilization controls discourage fidelity to person-centered planning. Lastly, presenters will offer tips advocates can use to urge states to include monitoring and enforcement mechanisms in state HCBS Transition Plans.

 

REGISTER NOW!

CPSD logoAUCD logo

NDRN logoNACDD logo



The Autistic Self Advocacy Network is proud to announce 

Pacific-Alliance.org

a new online resource for self-advocacy groups and self-advocates.

 
The Pacific Alliance supports self advocacy groups in Oregon, Washington, California and Montana in increasing their ability to organize and advocate in their state and local communities. As part of the Pacific Alliance project, ASAN is creating helpful, informative trainings and materials on disability self-advocacy. Pacific-Alliance.org will make these resources available for self advocates and allies all over the world.
 
All of the Pacific Alliance webinars, resources, and guides will be available online at Pacific-Alliance.org. The website will also feature a forum for self advocates to talk and share strategies with each other.

 

You can find two new guides on the Pacific Alliance website this month:

 
“Fantastic Facilitation” explains how to facilitate and run a meeting. “Getting What You Came For” is an advanced guide that explains strategies you can use when meeting with someone about a topic that is important to you (e.g. legislative visits).
We hope you enjoy this new online resource for self-advocacy groups seeking to take the next step in their development. Please feel free to share the Pacific Alliance with your friends and colleagues.

 

Visit Pacific-Alliance.org Now!

 

This project made possible thanks to generous support from the Administration on Community Living.



Webinar on Model Legislation for Supported Decision Making

Wednesday, August 6th

3:00pm EST

 

 

The Autistic Self Advocacy Network is excited to announce an upcoming webinar on our recently released model legislation for supported decision making in healthcare contexts. 

 

Often, people with intellectual and developmental disabilities are placed under guardianship – and thus lose the right to make their own choices about their lives – based on their need for support when making health care decisions. Doctors and service workers may tell families to seek guardianship because they think it is the only way to make sure that people with disabilities get the support or advice they may need in order to get the health care they need. Sometimes, doctors may even refuse to treat a person with an intellectual or developmental disability who doesn’t have a guardian, due to a belief that people with disabilities cannot give “informed consent” to health care. 

 

The model legislation, which ASAN developed in collaboration with the Quality Trust for Individuals with Disabilities, would enable people with intellectual or developmental disabilities to name a trusted person to help communicate with doctors, understand health care information, make informed decisions about health care, and/or carry out daily health-related activities. Unlike guardianship, supported decision-making arrangements let people with disabilities keep the ability to make their own decisions. Advocates can use this model legislation and ASAN’s Questions and Answers resource when talking to their state legislators about ways to support people make independent health care decisions. 

 

In this webinar, ASAN’s Director of Public Policy Samantha Crane will lead an in-depth discussion on the model legislation, providing additional explanation and analysis, answering common questions, and explaining how advocates can use this model legislation in their advocacy at a state level.

 

Those interested in participating in the webinar are encouraged to register as soon as possible, as the webinar is open to a limited number of participants.

 

Register now!



ASAN is proud to announce the release of a comprehensive toolkit to empower people with disabilities and their families to manage their own health care as they transition to adulthood. As we found in our 2013 report, youth with intellectual and developmental disabilities face a variety of barriers to accessing and managing their health care when they reach adulthood. Youth may no longer have access to the same source of health coverage that they had before they turned 18. They may have difficulty finding adult-oriented health care providers who understand their health care and communication needs. Worse still, they may not get the supports they need in order to understand their health care options and make decisions for themselves.

ASAN’s toolkit on health care and the transition to adulthood provides resources for advocacy both on an individual and a system-wide basis.


Transition to Adulthood: A Health Care Guide for Youth and Families” provides people with people with disabilities and their families with information on how to choose a source of health care coverage, create a health care support network, integrate health care transition goals into their educational plans, and manage their health care. It includes useful guides and worksheets for keeping track of health care records, making doctor’s appointments, and talking to doctors about health concerns.


The toolkit also includes Model Supported Health Care Decision-Making Legislation and its accompanying Questions and Answers resource. The model legislation, which ASAN developed in collaboration with the Quality Trust for Individuals with Disabilities, would enable people with intellectual or developmental disabilities to name a trusted person to help communicate with doctors, understand health care information, make informed decisions about health care, and/or carry out daily health-related activities. Advocates can use this model legislation when talking to their state legislators about ways to support people make independent health care decisions.


ASAN’s policy brief, The Transition to Adulthood for Youth with ID/DD: A review of research, policy, and next steps, discusses the range of challenges facing youth with intellectual and developmental disabilities as they approach adulthood, including potential loss of health care coverage, barriers to obtaining adult-oriented care, and lack of support in making health care decisions. It outlines several policy recommendations to eliminate these barriers, including expanding access to income-based Medicaid coverage, increased education and awareness of the importance of transition and decision-making supports, and increased research on best practices in transition planning.


ASAN’s toolkit on health care and the transition to adulthood is the second of four upcoming toolkits for advocates on health care issues facing the disability community. These toolkits were made possible by funding from the Special Hope Foundation.

 
We hope that you find our toolkit useful and distribute it widely. Please send any questions, concerns, feedback, or comments on how you plan to use the toolkit or interest in promoting our model state legislation to ASAN’s Director of Public Policy, Samantha Crane, at scrane@autisticadvocacy.org . 


Freddie Mac, a leading mortgage finance company, is partnering with the Autistic Self Advocacy Network to fill three paid internship opportunities. The ASAN-Freddie Mac Internship Program is an opportunity for recent graduates and current students on the autism spectrum to gain work experience and enter the workforce of a leading American company committed to neurological diversity. These internships are full time paid positions. Successful candidates will need to relocate to the DC metro area for the 16 week internship period beginning in early September. 

 

 

There are several internship positions available and applicants will be selected for the best position suited to them based on their applications and interviews. Applicants should be interested in working in subject areas such as mathematics, statistics, economics, and computer science, as these will be the subject areas relevant to the offered positions. Depending on the position, applicants should have a number of skills including basic computer understanding including Microsoft Office as well as a comfort in thinking primarily with numbers. Proficiency in computer programming in one or more languages, such as VBA, MatLab, C++ or SAS, may be helpful in selecting candidates for certain available positions. 

 

 

Applications will be screened by ASAN and Freddie Mac staff and not all who apply will receive an interview. Successful applicants will receive paid internship positions within various Freddie Mac operating divisions. These internships are available only to students and recent graduates on the autism spectrum. 

 

 

If you are interested, we strongly encourage you to send your resumé to resumes@autisticadvocacy.org.Many of our past interns have had their employment extended on a long term basis. We hope you’ll consider this opportunity and look forward to reviewing your application!



Last week, the US Department of Education announced a new accountability framework for state compliance with the Individuals with Disabilities Education Act (IDEA).  This new accountability framework, entitled Results-Driven Accountability, includes for the first time the use of independent outcome data from the National Assessment of Educational Progress (NAEP) and other outcome measures to evaluate state compliance with IDEA and the effectiveness of special education services. In addition, the Department has announced a $50 million Technical Assistance Center on Systemic Improvement  to provide necessary assistance and intervention for states.  For the first time, states will now be held accountable for the educational outcomes of students with disabilities, rather than simply meeting compliance indicators.

 

The Autistic Self Advocacy Network applauds the US Department of Education for giving serious consideration toward the achievement gap facing students with disabilities and putting together this system of accountability to help promote educational success. We strongly urge the Department to continue to utilize independent outcome data from NAEP and other relevant data sources to hold states accountable for the educational achievement of students with disabilities. To quote US Secretary of Education Arne Duncan, “Every child, regardless of income, race, background, or disability can succeed if provided the opportunity to learn.”  

 

It is the hope of ASAN that new regulations like this will continue to improve the education and lives of people with disabilities.   Advocates should look at their state’s performance in the Results Driven Accountability framework and utilize the Department’s assessment and the accompanying data to target advocacy around improving educational outcomes for students with disabilities in their state. State determinations are available below, and the Department’s data on educational achievement, inclusion and post-school outcomes is available on a state by state basis: http://www2.ed.gov/fund/data/report/idea/partbspap/allyears.html

[Map of State Determinations under Results Driven Accountability]

 

Meets Requirements Florida, Georgia, Indiana, Kansas, Massachusetts, Minnesota, Missouri, Nebraska, New Hampshire, New Jersey, Pennsylvania, Vermont, Virginia, Wisconsin, Wyoming, Federated States of Micronesia, Marshall Islands, Palau

 

Needs Assistance Alabama, Alaska, Arizona, Arkansas, Colorado, Connecticut, Hawaii, Idaho, Illinois, Iowa, Kentucky, Louisiana, Maine, Maryland, Michigan, Mississippi, Montana, Nevada, New Mexico, New York, North Carolina, North Dakota, Ohio, Oklahoma, Oregon, Rhode Island, South Carolina, South Dakota, Tennessee, Utah, Washington, West Virginia, American Samoa, Commonwealth of Northern Marianas, Guam, Puerto Rico

 

Needs Intervention California, Delaware, District of Columbia, Texas, Bureau of Indian Education, Virgin Islands Sources: IDEA Part B Annual Performance Report Compliance Data and Results Data, including EDFacts (2012-13 School Year) and National ssessment of Educational Progress (2013 NAEP Results)

 



 

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.

 

REMAINING SPRING WEBINARS: 

 

 

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

 

 

 

SUMMER SERIES

 

 

 

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. 



Apr

19

 

Dear Readers,

 

Wishing you a very Happy Easter!

 

Very Best Wishes,

 

Julie

xx



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
erica.erwin@timesnews.com

 

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:

http://www.goerie.com/article/20140406/NEWS02/304059973/Mercyhurst-student-AIMs-high



STEPHEN SHORE

 

PUBLISHED: TUESDAY, APRIL 8, 2014 AT 1:04 PM

 

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:

http://www.mpcourier.com/article/20140408/DCO/704089684