September 2014



Recent Posts


Archive for September, 2014

Dear friends,


We need your help. This summer, President Obama signed into law the Autism CARES Act, replacing the Combating Autism Act and giving us an opportunity to turn over a new leaf in federal autism policy. But we need more than just a change in name – we need a change in policy.


Congresswoman Jan Schakowsky has drafted a letter to the Administration urging them to implement Autism CARES in a way that includes Autistic people and increases the amount of funding going towards services research. The letter will be going out to the Department of Health and Human Services and the National Institutes of Health soon. We need you to help us get your Member of Congress on it. 


Here’s what you can do:


1) Call the Capitol Switchboard at (202) 224-3121.


2) Tell the Operator you’re calling to speak to your Representative’s office and give your zip code to let them find it.


3) After they connect you with the office, use the following script:


“Hi, my name is [YOUR NAME], I’m a constituent and live in [YOUR TOWN] and am calling to urge Congressman/Congresswoman [THEIR LAST NAME] to sign on to the Schakowsky letter about including autistic adults in the research process. Congresswoman Jan Schakowsky is the lead signatory. Could I speak with the staffer in your office responsible for health policy issues?”


[After being connected with that staffer]


“Hi, I’m a constituent and am calling to encourage you to sign on to Congresswoman Schakowsky’s letter to the Administration urging the inclusion of autistic adults in the autism research process. This is a very important issue – today, only 2.4% of federal autism research dollars go to services and less than 1.5% go to the needs of adults. Waverly Gordon is the staff member in Rep. Schakowsky’s office responsible for the letter. Would you be willing to reach out to her to discuss your office signing on?”


[After they give you a response]


“Thanks so much. Can I get your e-mail address so I can send you a copy of the letter and follow up with you afterwards?”


[After they give you a response to this]


“Thanks so much for taking the time. Have a good day!”


4) Follow up with an e-mail to the office, attaching a copy of this letter and urging them to sign on to support the inclusion of autistic people in autism research.


After you make the call, reach out to ASAN’s Director of Public Policy, Samantha Crane, at scrane@autisticadvocacy.org and let us know how it went so we can keep track of progress. We need your help to make a difference.


Thank you, and as always, Nothing About Us, Without Us.


Warm regards,


Ari Ne’eman


Autistic Self Advocacy Network

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.



CPSD logoAUCD logo

NDRN logoNACDD logo

The Autistic Self Advocacy Network is proud to announce 


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.