Left: SFASA’s Sara Kole, ASA president Scott Badesch, and SFASA’s Martha Johanson. Upper right: We heard how Sesame Street’s Julia promotes awareness and acceptance. Bottom right: We learned about a virtual reality device can help build real-world skills.
By Martha Johanson and Sara Kole
It was a pleasure to attend the 50th anniversary of the Autism Society, July 10-12, 2018, held on its “home turf” for the first in the Washington, DC area since the inaugural meeting. SFASA is among this nation-wide network of grassroots affiliates providing information, referral, support, and advocacy services to local community members affected by autism spectrum disorders. While self advocacy and political advocacy was the main focus of the conference, co-sponsor, SPARK (https://sparkforautism.org) had sessions on engaging the autism community in research, and there were BCBA CE eligible sessions on technology adoption, safety, early intervention, reducing restrictive practices, college readiness, and accommodations and trauma in the school setting and employment. Lacking, however was a badly needed focus on housing, continuum of care, and community support models.
We are happy to report a few of the highlights.
It was a pleasure to attend the 50th anniversary of the Autism Society, July 10-12, 2018, held on its “home turf” for the first in the Washington, DC area since the inaugural meeting. SFASA is among this nation-wide network of grassroots affiliates providing information, referral, support, and advocacy services to local community members affected by autism spectrum disorders. While self advocacy and political advocacy was the main focus of the conference, co-sponsor, SPARK (https://sparkforautism.org) had sessions on engaging the autism community in research, and there were BCBA CE eligible sessions on technology adoption, safety, early intervention, reducing restrictive practices, college readiness, and accommodations and trauma in the school setting and employment. Lacking, however was a badly needed focus on housing, continuum of care, and community support models.
We are happy to report a few of the highlights.
Day 1 highlights
• A company called Floreo presented a virtual reality device that children with autism can wear to build their “real world” skills – such as connecting socially, standing in line, and ordering and paying during shopping.
• A session discussed the dramatic increase in housing prices (something we know all too well here in the crazy expensive Bay Area). We also learned about a plan for a 60-to-70-unit intergenerational housing model in Baltimore to address housing instability, reduce social isolation, and maximize individual potential.
• Andrea Cody of Sesame Street discussed how the character with autism, Julia, helps promote awareness and acceptance by breaking down barriers.
• A new documentary film, Extraordinary People, told the story of six adults with autism who deal with daily challenges and find real meaning in their work.
• A session for affiliate leaders focused on advocacy and outreach.
Day 2 highlights
• Some sessions were of a more general nature geared mostly to appreciating diversity and finding individual talents and strengths for functional and successful outcomes for autistic adolescents and adults.
• The 3 A’s of Autism: Awareness, Acceptance and Appreciation as Pathway to Success, as presented by Stephen Shore of Adelphi University. Dr. Shore focused on strengths and building areas of interest, not disabilities. He recommended an employment preparation strategy based on household responsibilities (Repetition, Proficiency and Responsibility). (Also see www.madisonhouseautism.org/autism-gurus-stephen-shore-ed-d-focuses-ability/)
He spoke words of hope to “embrace your inner geek and be “uniquely human” in your autism, referencing Barry Prizant’s, book https://itunes.apple.com/us/book/uniquely-human/id936184908?mt=11 that won the literary award from ASA a few years ago. His message resonates generally, but then falls flat when some of us consider our adult children with complicated non-verbal autism.
• The Autistic Organic Gardener. Elaine Hall of the Miracle Project was “miraculous” and a wonderful relief from other sessions that offered nothing new and spoke only in generalities. We learned of the work of Ryan Berman and the amazing Elaine Hall who works with her son, Neal Katz, to develop his passions into life skills and fulfilling employment. Neal, a 24-year old with nonverbal autism, uses his iPad and other assistive technology to communicate. He was this year’s recipient of the ASA’s Daniel Jordan Fiddle Foundation Leader in Adult Autism Award. See
https://www.prnewswire.com/news-releases/third-annual-daniel-jordan-fiddle-foundation-leader-in-adult-autism-award-will-be-presented-to-disability-emissary-neal-katz-at-autism-society-of-america-national-conference-july-10-12-300671756.html
Together with Elaine and assistant Ryan, Neal shared his amazing story of how his passion for helping others and having a lifelong commitment to advocacy led him on a journey to understand his own passion for nature and ultimately, lead to the discovery of meaningful and satisfying employment as an organic gardener. His message to attendees – do anything you can to truly “listen” to your child and discover his/her passions (especially when your child is nonverbal). He firmly believes that “obsessions” can be viewed as “passions” and that these are the foundation for the functional or educational goals that can reflect a child’s true nature and abilities, and in some cases, can lead to successful employment. Neal has been referred to as the “Disability Emissary,” having also worked in and a major role in the HBO Emmy Award winning film, “Autism: The Musical.” https://www.autismthemusical.com/index.php?session=myhomepage&id=
• Mary Joann Lang of the Beacon Day School discussed the impact of trauma in student with autism in the classroom and elsewhere. She emphasized the need to recognize the signs of PTSD so that education professionals can develop appropriate interventional strategies, such as developing a less stressful, nurturing environment.
• The keynote speaker was Mary Lazare, Administration for Community Living (ACL) Principal Deputy Administrator since June, 2017 https://www.acl.gov/about-acl/organization/leadership. She discussed the role of the ACL and the “5 Pillars” that comprise ACL’s mission in its role of providing technical assistance and administering grant programs. The pillars are: connecting people to resources; strengthening networks and making resources available at the state and local levels; training; protecting the rights of individuals with disabilities and the aging; and employment options.
Lazare, a sibling of a sister who is developmentally disabled, also spoke strongly of the ACL’s commitment to “remove barriers” when it comes to offering choice to developmentally disabled (DD) adults seeking housing opportunities. She also spoke of the commitment included in ACL’s mission of “finding better ways to support family and all caregivers” through what she hopes will eventually evolve into what she termed as a “lifespan respite program” for individuals with DD. While she referenced the RAISE Family Caregivers Act, https://www.autismspeaks.org/advocacy/advocacy-news/raise-family-caregivers-act-signed-law
She acknowledged this was not enough and wanted to put more focused attention on identification and support of the needs of family and professional caregivers. In reference to the issue of employment for the DD population, she voiced the ACL’s commitment to the strength-based approach while also recognizing the supports needed for the growing number of people that are in need, referring the amount of care as a “house of cards” as those affected by DD age. Lazare mentioned how important collaboration is and the partnerships needed to advance research and to measure and evaluate evidence-based interventions. An emphasis on positive outcome date will be guiding the ACL’s future grantees. She urged conference participants to access the National Institute on Disability Research https://www.naric.com/?q=en/home as a resource for best practices/interventions.
• In the afternoon, Robert Naseef and Stephen Shore spoke on Autism & the Transition to Adulthood: Neurodiversity in the Workplace. They have developed a curriculum of activities and videos that help employers make the adjustments needed to leverage the talents of these individuals and effectively integrate them into the workplace.
• During the Health and Community-Based Services and Supports session Autism Society coalition partners explored federal policy developments related to health and services that support community living. Among the partners, was Alison Barkoff, Director of Advocacy for the Center for Public Representation https://centerforpublicrep.org. Her remarks centered on what advocates can do to help protect the laws in place for DD individuals including:
1) to advocate for reauthorization of the “Money Follows the Person (MFP) program through the passage of the bi-partisan EMPOWER Care Act that has been introduced in both the House and Senate (this would reauthorize and fund the MFP through 2022 and add enhancements to the program).
2) Ask for members of Congress to support and co-sponsor the Disability Integration Act, bi-cameral, bi-partisan legislation that creates a civil right for community living for DD individuals who need long-term services and supports and thus needed services and support must be provided and public entities must address the need for affordable, accessible, integrated housing for the DD population.
3) Participate in opportunities for CA plan development to help set visions and goals for the Medicaid HCBS Settings Rule, finalized in March 2014 and states have until March 2022 to fully implement.
4) Continue to support a delay in the CURES Act which includes the Electronic Visit Verification (EVV) and ask for more stakeholder input on serious issues of invasion of privacy etc. Thank members of the House for voting to delay the bill and ask state Senators to do the same.
• Finally, we attended the Public Policy: Autism CARES and Health Care panel discussion. The participants focused on the importance of reauthorizing the Autism CARES Act, which expires in September 2019.
• A company called Floreo presented a virtual reality device that children with autism can wear to build their “real world” skills – such as connecting socially, standing in line, and ordering and paying during shopping.
• A session discussed the dramatic increase in housing prices (something we know all too well here in the crazy expensive Bay Area). We also learned about a plan for a 60-to-70-unit intergenerational housing model in Baltimore to address housing instability, reduce social isolation, and maximize individual potential.
• Andrea Cody of Sesame Street discussed how the character with autism, Julia, helps promote awareness and acceptance by breaking down barriers.
• A new documentary film, Extraordinary People, told the story of six adults with autism who deal with daily challenges and find real meaning in their work.
• A session for affiliate leaders focused on advocacy and outreach.
Day 2 highlights
• Some sessions were of a more general nature geared mostly to appreciating diversity and finding individual talents and strengths for functional and successful outcomes for autistic adolescents and adults.
• The 3 A’s of Autism: Awareness, Acceptance and Appreciation as Pathway to Success, as presented by Stephen Shore of Adelphi University. Dr. Shore focused on strengths and building areas of interest, not disabilities. He recommended an employment preparation strategy based on household responsibilities (Repetition, Proficiency and Responsibility). (Also see www.madisonhouseautism.org/autism-gurus-stephen-shore-ed-d-focuses-ability/)
He spoke words of hope to “embrace your inner geek and be “uniquely human” in your autism, referencing Barry Prizant’s, book https://itunes.apple.com/us/book/uniquely-human/id936184908?mt=11 that won the literary award from ASA a few years ago. His message resonates generally, but then falls flat when some of us consider our adult children with complicated non-verbal autism.
• The Autistic Organic Gardener. Elaine Hall of the Miracle Project was “miraculous” and a wonderful relief from other sessions that offered nothing new and spoke only in generalities. We learned of the work of Ryan Berman and the amazing Elaine Hall who works with her son, Neal Katz, to develop his passions into life skills and fulfilling employment. Neal, a 24-year old with nonverbal autism, uses his iPad and other assistive technology to communicate. He was this year’s recipient of the ASA’s Daniel Jordan Fiddle Foundation Leader in Adult Autism Award. See
https://www.prnewswire.com/news-releases/third-annual-daniel-jordan-fiddle-foundation-leader-in-adult-autism-award-will-be-presented-to-disability-emissary-neal-katz-at-autism-society-of-america-national-conference-july-10-12-300671756.html
Together with Elaine and assistant Ryan, Neal shared his amazing story of how his passion for helping others and having a lifelong commitment to advocacy led him on a journey to understand his own passion for nature and ultimately, lead to the discovery of meaningful and satisfying employment as an organic gardener. His message to attendees – do anything you can to truly “listen” to your child and discover his/her passions (especially when your child is nonverbal). He firmly believes that “obsessions” can be viewed as “passions” and that these are the foundation for the functional or educational goals that can reflect a child’s true nature and abilities, and in some cases, can lead to successful employment. Neal has been referred to as the “Disability Emissary,” having also worked in and a major role in the HBO Emmy Award winning film, “Autism: The Musical.” https://www.autismthemusical.com/index.php?session=myhomepage&id=
• Mary Joann Lang of the Beacon Day School discussed the impact of trauma in student with autism in the classroom and elsewhere. She emphasized the need to recognize the signs of PTSD so that education professionals can develop appropriate interventional strategies, such as developing a less stressful, nurturing environment.
• The keynote speaker was Mary Lazare, Administration for Community Living (ACL) Principal Deputy Administrator since June, 2017 https://www.acl.gov/about-acl/organization/leadership. She discussed the role of the ACL and the “5 Pillars” that comprise ACL’s mission in its role of providing technical assistance and administering grant programs. The pillars are: connecting people to resources; strengthening networks and making resources available at the state and local levels; training; protecting the rights of individuals with disabilities and the aging; and employment options.
Lazare, a sibling of a sister who is developmentally disabled, also spoke strongly of the ACL’s commitment to “remove barriers” when it comes to offering choice to developmentally disabled (DD) adults seeking housing opportunities. She also spoke of the commitment included in ACL’s mission of “finding better ways to support family and all caregivers” through what she hopes will eventually evolve into what she termed as a “lifespan respite program” for individuals with DD. While she referenced the RAISE Family Caregivers Act, https://www.autismspeaks.org/advocacy/advocacy-news/raise-family-caregivers-act-signed-law
She acknowledged this was not enough and wanted to put more focused attention on identification and support of the needs of family and professional caregivers. In reference to the issue of employment for the DD population, she voiced the ACL’s commitment to the strength-based approach while also recognizing the supports needed for the growing number of people that are in need, referring the amount of care as a “house of cards” as those affected by DD age. Lazare mentioned how important collaboration is and the partnerships needed to advance research and to measure and evaluate evidence-based interventions. An emphasis on positive outcome date will be guiding the ACL’s future grantees. She urged conference participants to access the National Institute on Disability Research https://www.naric.com/?q=en/home as a resource for best practices/interventions.
• In the afternoon, Robert Naseef and Stephen Shore spoke on Autism & the Transition to Adulthood: Neurodiversity in the Workplace. They have developed a curriculum of activities and videos that help employers make the adjustments needed to leverage the talents of these individuals and effectively integrate them into the workplace.
• During the Health and Community-Based Services and Supports session Autism Society coalition partners explored federal policy developments related to health and services that support community living. Among the partners, was Alison Barkoff, Director of Advocacy for the Center for Public Representation https://centerforpublicrep.org. Her remarks centered on what advocates can do to help protect the laws in place for DD individuals including:
1) to advocate for reauthorization of the “Money Follows the Person (MFP) program through the passage of the bi-partisan EMPOWER Care Act that has been introduced in both the House and Senate (this would reauthorize and fund the MFP through 2022 and add enhancements to the program).
2) Ask for members of Congress to support and co-sponsor the Disability Integration Act, bi-cameral, bi-partisan legislation that creates a civil right for community living for DD individuals who need long-term services and supports and thus needed services and support must be provided and public entities must address the need for affordable, accessible, integrated housing for the DD population.
3) Participate in opportunities for CA plan development to help set visions and goals for the Medicaid HCBS Settings Rule, finalized in March 2014 and states have until March 2022 to fully implement.
4) Continue to support a delay in the CURES Act which includes the Electronic Visit Verification (EVV) and ask for more stakeholder input on serious issues of invasion of privacy etc. Thank members of the House for voting to delay the bill and ask state Senators to do the same.
• Finally, we attended the Public Policy: Autism CARES and Health Care panel discussion. The participants focused on the importance of reauthorizing the Autism CARES Act, which expires in September 2019.
Left: Martha and her daughter with Senator Bob Melendez. Right: With Rep Zoe Lofgren.
Day 3 was the Day on the Hill
Martha started the day at breakfast with members of Congress & staff at the Dirksen Senate Office Building. Senator Bob Menendez (NJ) – said “you show the world… with the right resources…and…support… you can lead healthy, productive, meaningful & independent lives….”
Then we were off to a series of meetings with our California legislators for the rest of the day: staff of Senator Kamala Harris; staff of Senator Diane Feinstein; and Representative Zoe Lofgren. We articulated our key issues: employment, education, the Autism Cares Act and home & community based supports. They listened carefully to us, took notes and engaged in productive conversations. We spoke about the importance of joining the Autism Caucus. It was a very positive experience.
List of Awards Given:
David Joyce, center, receives the Outstanding Advocate award from his father, Joe Joyce, chair of the ASA board.
Outstanding Advocate of the Year – David Joyce
https://www.autism-society.org/wp- content/uploads/2018/07/joe_joyce_testimony.pdf
Volunteer of the Year - Carly Fulgham, Autism Society of Ventura
http://www.autismventura.org/2018/07/16/asvc-president-awarded-national-volunteer-of-the-year-award/
Temple Grandin Award for Outstanding Literary Work of the Year –
“Complete Guide to Autism Care” by Anita Lesko
https://www.barnesandnoble.com/w/the-complete-guide-to-autism-healthcare-anita-lesko/
The Daniel Jordan Fiddle Foundation Leader in Adult Autism Award
Neal Katz (mentioned above)
Adam Heavner Memorial Award for Business of the Year
The Precisionists, Inc. https://theprecisionists.com
https://theprecisionists.com/wp-content/uploads/2018/07/ASA-TPI-joint-press-release-07.18.18-.pdf
Dr. Cathy Pratt Ward for Autism Professional of the Year – Liz Weintraub
http://www.boldbeautyproject.com/portfolio-item/liz-weintraub/
Bob Beggan Award for Professional Mentorship – Bob Beggan
https://www.legacy.com/obituaries/washingtonpost/obituary.aspx?n=robert-beggan-bob&pid=189041179
https://www.autism-society.org/wp- content/uploads/2018/07/joe_joyce_testimony.pdf
Volunteer of the Year - Carly Fulgham, Autism Society of Ventura
http://www.autismventura.org/2018/07/16/asvc-president-awarded-national-volunteer-of-the-year-award/
Temple Grandin Award for Outstanding Literary Work of the Year –
“Complete Guide to Autism Care” by Anita Lesko
https://www.barnesandnoble.com/w/the-complete-guide-to-autism-healthcare-anita-lesko/
The Daniel Jordan Fiddle Foundation Leader in Adult Autism Award
Neal Katz (mentioned above)
Adam Heavner Memorial Award for Business of the Year
The Precisionists, Inc. https://theprecisionists.com
https://theprecisionists.com/wp-content/uploads/2018/07/ASA-TPI-joint-press-release-07.18.18-.pdf
Dr. Cathy Pratt Ward for Autism Professional of the Year – Liz Weintraub
http://www.boldbeautyproject.com/portfolio-item/liz-weintraub/
Bob Beggan Award for Professional Mentorship – Bob Beggan
https://www.legacy.com/obituaries/washingtonpost/obituary.aspx?n=robert-beggan-bob&pid=189041179
Some resources suggestions from the presenters:
- Updates about MFP, EVV and Medicaid Advocacy: www.protectourmedicaid.org
- Updates of the HCBS Settings Rule: www.hcbsadvocacy.org
- Updates about the Disability Integration Act: http://www.disabilityintegration.org
Overall, the 50th conference of the Autism Society, though lacking in serious exploration of many of the extremely difficult challenges faced by autism families, was a great opportunity to connect with other leaders who share our passion to make a difference in the lives of our autism community.
Martha Johanson and Sara Kole are members of the board of Autism Society San Francisco Bay Area.
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