Don’t Let Medicare Take Away Severely Disabled People’s Ability to Communicate! || Center for Medicare Advocacy

Recent changes to Medicare are drastically reducing the ability of the most vulnerable people with disabilities to communicate.

As of April 1, 2014, Medicare began denying payment for many of the medically necessary speech generating devices used by people with ALS (Lou Gehrig’s Disease), Cerebral Palsy, Spinal Cord Injuries, and other impairments, when they enter a health care facility, such as a skilled nursing home or hospice. Taking these highly specialized devices away leaves them no way to communicate at a vulnerable and terrifying time.

On September 1, 2014, many severely disabled individuals will have all contact with the outside world cut off. For many years, Medicare allowed individuals using Medicare-provided speech generating devices to use their own funds to “upgrade” the devices. This allowed them to communicate beyond the confines of their room through email, internet, and text messages. After September, Medicare will no longer pay for any device that has the potential to be upgraded to allow communication outside the room

Currently, Medicare routinely denies coverage of the critical eye-gaze technology necessary by some people to operate these speech devices, even when its medical necessity is well documented.  They have no way to communicate as a result. After years of waiting for an appeal to Medicare, the eye-gaze coverage is routinely allowed, but individuals should not be forced to wait years without a voice. 

We need your “voice!” […]

Remarks from ASAN President Ari Ne’eman, delivered at the ASAN Gala at the National Press Club on November 12th, 2013.

Conceptions of Autism 4.0 Survey

A couple researchers who have studied neurodiversity, including Autistic self-advocate Steven Kapp, have designed an online training on knowledge of autism. They have tried to represent up-to-date “scientific knowledge” about autism, including ideas drawn from the neurodiversity movement. It is the first training study on autism to intentionally include Autistic people, but it’s open to all adults. It allows opportunities to critique the measures and training; a major part of the study is to see which aspects of “scientific knowledge” are considered relevant or true. 

It takes about an hour and must be completed in one sitting.

Remarks from Leon Rodriguez, director of the Office of Civil Rights of the U.S. Department of Health and Human Services, delivered at the ASAN Gala at the National Press Club on November 12th, 2013.

[5 different tangles in different colors and textures.]


hello! this is my giveaway celebrating having 500 followers.


  • you must be autistic
  • you must be okay with giving me your address to send the prize if you win.
  • reblogs and likes count as an entry!
  • you don’t have to be following me to enter but it would be cool if you did. 
  • if you are not autistic and want to reblog this post to signal boost it please reblog with “signal boost” in the comments or tags.

First place:
A choice of either a fuzzy tangle (is a velvety texture) or a lumpy tangle (has plastic bumps on it). if you don’t like the textures of either of these you can also choose one of the plain plastic ones.

Second place:

A choice of a plain tangle in either red black (i have this one) or blue.

Giveaway will end on 18th September 2014 and i will be using to pick the winners.

Commission Formally Recommends Closure of Some State Institutions, by Edgar Walters

Save the Date: ASAN's 2014 Gala will be November 12th at 6pm!

Keynote speaker: Melody Musgrove, Director of the Office of Special Education Programs

Join us for a special celebration and fundraising event at The National Press Club in Washington, DC

Dinner and dessert will be served and a reception will precede dinner.


Sharon da Vanport, Award for Service to the Self Advocacy Movement

Diane Coleman, Ally of the Year Award

Proceeds will support our advocacy work and programs for the coming year, and will allow us to continue working to empower disabled people across the country.

For more information about sponsorship opportunities, contact Jean Winegardner at

Event Location:

National Press Club
529 14th St NW
Washington, DC 20045

Save the date, or register at the above link!


So I want to write an email to my professors, particularly the ones for the Communications-specific classes, letting them know before class starts that I’m autistic. But I’m not really sure what to say beyond that, or how to break down what that means in an academic context. It’s sort of awkward because I’ve never been “out” about it in college, but since some of my classes are going to rely heavily on communication and public speaking and stuff, so it’s going to end up being relevant. Anyone have any suggestions/links on how to talk to my professor about it?

Submission Guidelines for Anthology on Autism & Race (deadline Nov. 15)


Please signal-boost these guidelines on submissions to autistic POC and also the link to our fundraiser to everyone! (You can watch our introduction video with captions and transcription, too.)
A collection of things written by autistic people of color talking about their lives, experiences, ideas, work, or other stories. The project will become a book available in different formats. Lydia Brown is the lead editor for the anthology, which will be published through the Autism Women’s Network.

Anyone who self-identifies as 

1. Autistic 
(with or without a formal diagnosis, includes PDD-NOS and Asperger’s)
2. Person of color, racialized, or non-white
Specifically, you might consider yourself one or more of the following:
  • Transethnic, transracial, or transnational adoptee
  • Mixed race, biracial, or multi-racial
  • Migrant
  • Indigenous, Native, Aboriginal, or First Peoples
  • Black, Caribbean, or African 
  • East Asian, Southeast Asian, or Pacific Islander
  • South Asian, Desi, Central Asian, or Middle Eastern
  • Brown
  • Latin@, Hispanic, or Latin American

Anything that you write or have already written. Your submission can be short or long, prose or poetry, formal or informal, academic or personal. Some possible formats include personal essays, creative non-fiction, poetry, blog posts, speeches, and academic writing. You may also submit more than one thing. 
Some suggested topics (but you don’t have to choose from this list):
  • Living at the intersection of disability and race
  • Cultural and community spaces for disabled people of color
  • Passing as white or neurotypical
  • Conceptualizing disability in non-white communities
  • Intersectional social justice for disabled people of color
  • Police brutality and profiling of disabled people of color, and state violence
  • Intimacy, kinship, chosen family, romance, and sexuality
  • Education
  • Employment
  • Housing
  • Disability services
  • Healthcare
  • Activism and advocacy
  • Further marginalized experiences (i.e., also being queer, migrant, trans*, poor, multiple-disabled, etc.)
  • Representation and visibility
  • Voice, silencing, erasure
  • Socialization, communication
  • Interdependence, healing, trauma
  • Violence and abuse
  • Resilience, power, reclamation, and solidarity

If you want more specific guidelines or concrete rules about submissions, contact Lydia Brown at
* Note: If it was published somewhere else, you need to have the legal right to submit it here. 

If we choose your submission, we will use whatever name you want to appear. 

Email your writing to Lydia Brown at Submissions can be attachments or in the email. 

15 November 2014.

You will find out by December 1. If we choose one or more of your submissions, we will begin communicating with you about the editing process at that time.

We need to raise $10,000 to cover publishing and printing costs for the anthology. If you or someone you know can donate any amount of money, everything helps. Check out our fundraising video and donate online!


My name is Lydia Brown (though you might know me better as Autistic Hoya). I’m an activist and writer focusing on violence against multiply-marginalized disabled people, including hate crimes, policy brutality, and prisoner abuse. At present, I am serving on the board of the Autism Women’s Network. I am also president and co-founder of the Washington Metro Disabled Students Collective. I have worked with the Autistic Self Advocacy Network’s national office, and am a past Patricia Morrissey Disability Policy Fellow at the Institute for Educational Leadership. In 2013, I was honored by the White House as a Champion of Change for disability rights. 
The mission of the Autism Women’s Network (AWN) is to provide effective supports to Autistic women and girls of all ages through a sense of community, advocacy and resources. AWN is committed to recognizing and celebrating diversity and the many intersectional experiences of Autistic women.  AWN welcomes all women, supporters of women, those who have at one time identified as women and non binary gender variant individuals.  AWN recognizes and affirms the gender identity of each individual.  AWN also welcomes the support and community of those who do not and have not identified as women as allies to support us in our work.

You can contact Lydia Brown, the editor, by email at or by phone or text message at (202) 618-0187