Episode #058 - Crisis Care for Severe and Profound Autism
Arzu Forough, President and CEO of Washington Autism Alliance, is our guest discussing crisis care for severe/profound autism. She discusses medical necessity, governing policies such as Medicaid, mental health parity, navigating insurance, types of placements, and the systemwide deficiencies in serving the population with severe and challenging behaviors. Washington Autism Alliance works to expand access to healthcare, education and services for people with Intellectual Developmental Disabilities including Autism. WAA provides legal services, individual case management and multi system navigation for individuals and families. www.WashingtonAutismAlliance.org
Episode #057 - Standing Up for Severe Autism on Social Media: Eileen Lamb
National Council on Severe Autism Webinar, May 15, 2024 We feature Eileen Lamb, one of the most visible and prolific social media personalities in the autism world. Eileen is an author, blogger, photographer, podcaster, the director of social media for Autism Speaks, and the mother of three children, one of whom, 11 year-old Charlie, has an extreme form of autism and another, Jude, who is higher functioning. She also serves on the board of NCSA. In this webinar and conversation Eileen shares the realities of Jude's profound autism, including persistent pica (ingestion of inedible objects), spitting, property destruction and aggression, her experiences being bullied online by neurodiversity adherents, her own autism diagnosis, and how she finds the time to share her story with the world while dealing with her son's life-threatening behaviors. Moderated by Jill Escher, NCSA. Links: The Autism Cafe: https://theautismcafe.com Adulting on the Spectrum podcast: https://www.autismspeaks.org/podcast/adulting-spectrum-meet-our-hosts Find us at NCSAutism.org
Episode #056 - Sounding Off About Autism Month
Autism Confidential returns to its usual podcast format for a discussion about April, Autism Month featuring host Jill Escher and guest Thomas McKean, a pioneering autism self-advocate. Jill and Tom discuss: Biden's signing of a proclamation declaring April "Autism Acceptance Month," historical background about Autism Month, some op-eds offering a dissenting view from the rah-rah rosy tone of April, acceptance of our kids v acceptance of autism, the very broken definition of "autism," and of course, guitar! Links to material discussed in the podcast: https://www.disabilityscoop.com/2024/04/03/white-house-embraces-autism-acceptance-over-awareness/30811/ https://www.cdc.gov/ncbddd/autism/toolkit.html#:~:text=April%20is%20Autism%20Acceptance%20Month,and%20connectedness%20throughout%20the%20community https://www.post-gazette.com/opinion/insight/2024/04/07/profound-autism-awareness-month-neurodivergence-disorder-labels/stories/202404070031 https://www.newsweek.com/i-love-my-child-i-hate-his-autism-1888870 Amie, by Pure Prairie League: https://youtu.be/lPgNbFni0oI?si=JWwD6swVhTyMn7jx
Episode #055 - Karen Fessel: Insurance Coverage for Severe Autism
Karen Fessel, executive director of the Mental Health and Autism Insurance Project, returns to our National Council on Severe Autism webinar series to explain how insurance coverage works for children and adults with severe autism. She goes into detail about the governing laws and about how you can fight at several levels to obtain the coverage your child needs. Followed by Q&A with the audience. Links: https://mhautism.org
Episode #054 - Discrimination by Design: How Policies Threaten the Most Severely Disabled
Featuring: Ashley Kim, Together for Choice Jackie Ceonzo, SNACK* NYC Note: For a video recording with slides, please see NCSAutism.org/webinars. There is a nationwide shortage of long term supports and services available and it disproportionately affects adults with intellectual/developmental disabilities in need of 24/7 support. The need for such housing has been ignored and gone unanswered for decades by many responsible for the well-being of this population. While Congress expected that the ADA’s integration mandate would be interpreted in a manner that ensures that individuals who are eligible for institutional placement are able to exercise a right to community-based long-term services and supports, that expectation has not been fulfilled. We believe that people with disabilities should have the right to choose where they live, work, and receive services that are appropriate for their needs and preferences without those responsible for making choice a reality blocking that path with red tape. Links: Togetherforchoice.org SNACKNYC.com