Episode #048 - Richard Edley, The Need for Reality-Based Programs for Adults with Severe Autism

Episode #048 - Richard Edley, The Need for Reality-Based Programs for Adults with Severe Autism

Richard Edley, PhD is President/CEO of Rehabilitation and Community Providers Association (RCPA) of Pennsylvania, and a nationally recognized leader pushing for care options for adults with autism and I/DD. He is also the father of an adult son with profound autism. In this episode he and Jill discuss:— The scope of the I/DD system in PA and the lengthy waitlists— The pressure of increasing autism cases— Program closures and selectivity against those with acute needs; the erosion of services for high needs— The workforce (DSP) crisis— Pennsylvania's restrictive interpretation of the HCBS Settings Rule— Advocates' mania for closure without offering realistic solutions— Arbitrary rules that create barriers to functional services— The difference between ideology and reality about I/DD the need to base systems on facts and data, not "theology"— The problematic use of the "Supports Intensity Scale"— Worries about how "Selective Contracting" will reduce choice— How to think about fixing our broken system that seems designed to collapse


Link:
RCPA: https://www.paproviders.org

Jaksot(58)

Episode #034 - Medicaid Funding for Autism Services, Part 1 with Melissa Harris, CMS

Episode #034 - Medicaid Funding for Autism Services, Part 1 with Melissa Harris, CMS

We are happy to present a two-part series with Melissa Harris, Deputy Director, Disabled and Elderly Health Programs Group, Centers for Medicare and Medicaid Services (CMS). Her role is to develop and...

17 Huhti 202341min

Episode #033 - Bridging the Divide

Episode #033 - Bridging the Divide

After Tom McKean (ep 29) suggested that NCSA invite Morénike Giwa Onaiwu, a prominent neurodiversity advocate, on the podcast, we were thrilled when she agreed to join us for a special episode about t...

3 Huhti 20231h 11min

Episode #032 - The Case for Profound Autism, with Dr. Lee Wachtel

Episode #032 - The Case for Profound Autism, with Dr. Lee Wachtel

This is an audio recording of the NCSA March 14, 2023 webinar featuring Dr. Lee Elizabeth Wachtel, one of the world's foremost clinicians serving patients with severe and profound autism. She is Medic...

27 Maalis 20231h 16min

Episode #031 - A Rare Gem: Paul Aronsohn, New Jersey's Ombudsman for I/DD

Episode #031 - A Rare Gem: Paul Aronsohn, New Jersey's Ombudsman for I/DD

We are very fortunate to host Paul Aronsohn, New Jersey Ombudsman for Individuals with Intellectual or Developmental Disabilities and Their Families. Paul serves a unique role not seen in any other st...

20 Maalis 202356min

Episode #030 - The Film Beyond Takes Viewers into an Unimaginable World of Profound Autism

Episode #030 - The Film Beyond Takes Viewers into an Unimaginable World of Profound Autism

The brilliant new documentary film, "Beyond" features Tamara Mark, a Hollywood actress and dancer, and now single mom living in LA with her two grown sons who suffer from severe autism, Ian and Harry....

9 Maalis 202352min

Episode #029 - Just Say No to the Bullying of Autism Parents

Episode #029 - Just Say No to the Bullying of Autism Parents

Pioneering autism advocate Thomas McKean joins us again (he first appeared in Ep 13) to discuss the bizarre online phenomenon of anti-parent bullying by militant autism self-advocates. Like witch hunt...

20 Helmi 20231h 4min

Episode #028 - Finding the Fun: Skiing and Sports with Severe Autism

Episode #028 - Finding the Fun: Skiing and Sports with Severe Autism

Outdoor activities bring joy to countless people with autism, all across the spectrum. We are incredibly honored to have two of the nation's top leaders in the field of sports and outdoor recreation f...

13 Helmi 202341min

Episode 027 - Thriving with Severe Autism at Bittersweet Farms

Episode 027 - Thriving with Severe Autism at Bittersweet Farms

Bittersweet Farms, established in the mid-1980s in Ohio, is a pioneering model of a farmstead-based residential and day program serving adults with autism complex behavioral needs. In a world where se...

6 Helmi 202356min

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