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 #042: Jackie Ceonzo: A Hero Serving Severe Autism in NYC

Episode #042: Jackie Ceonzo: A Hero Serving Severe Autism in NYC

If Jill were to create a pantheon of Autism Gods, Jackie Ceonzo would be right there in the center. She is the rare autism mom who struck out to create recreational and enrichment classes and activiti...

31 Heinä 202344min

Episode # 041 - Jill Gets Deluged by Questions

Episode # 041 - Jill Gets Deluged by Questions

Last week, a long-form essay about autism by Jill Escher was published in The Free Press (TheFP.com). The article was about how we have grown increasingly complacent about the autism crisis at a time ...

24 Heinä 202332min

Episode #040 - Susan Goldstein: A Champion for Autism in Florida

Episode #040 - Susan Goldstein: A Champion for Autism in Florida

For nearly three decades an extraordinary autism mom has been pushing the envelope for new programs, new funding streams, and new policies to benefit children and adults with autism. After Susan Golds...

26 Kesä 202342min

Episode #039 - Sia's' "Autism" and What Does "Autism" Mean Anyway? A Double-Header

Episode #039 - Sia's' "Autism" and What Does "Autism" Mean Anyway? A Double-Header

For almost all of its history autism was considered a "pervasive developmental disorder." It involved serious deviations from normal development, serious impairments in communication, social relatedne...

5 Kesä 202355min

Episode #038 - Dental Care for Patients with Autism, with Dr. Allen Wong, Part 2

Episode #038 - Dental Care for Patients with Autism, with Dr. Allen Wong, Part 2

We again speak with Allen Wong, DDS, is Director of Advanced Education in General Dentistry, Residency Program, University of the Pacific. He teaches dentistry for special health care needs, and hospi...

29 Touko 202333min

Episode #037 - Dental Care for Patients with Autism, with Dr. Allen Wong, Part 1

Episode #037 - Dental Care for Patients with Autism, with Dr. Allen Wong, Part 1

By popular request we are featuring two episodes devoted to all things teeth and dentistry, which looms as a huge issue for autism families. Allen Wong, DDS, is Director of Advanced Education in Gener...

15 Touko 202335min

Episode #036 - Traveling With Autism: Lara Sandora, Advocate, and Pernell Wint, Beaches Resorts

Episode #036 - Traveling With Autism: Lara Sandora, Advocate, and Pernell Wint, Beaches Resorts

As summer approaches, we are happy to feature two perspectives on traveling with autism. First we speak with Lara Sandora, a parent advocate, travel blogger, and special needs vacation home provider. ...

1 Touko 202357min

Episode #035 - The HCBS Settings Rule, Part 2 with Melissa Harris, CMS

Episode #035 - The HCBS Settings Rule, Part 2 with Melissa Harris, CMS

In Part 2 of our discussion with Melissa Harris, Deputy Director, Disabled and Elderly Health Programs Group, Centers for Medicare and Medicaid Services (CMS), we focus on the Home and Community Based...

24 Huhti 202346min

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