Read Joe Joyce’s full testimony below:

Thank you, Dr. Gordon and the rest of the Committee for allowing me to provide brief comments. I am providing this testimony on behalf of the Autism Society of America; and as a father of two adult sons with developmental disabilities.

My wife Elise and I are parents of two individuals with significant functional limitations: David, age 24, has Autism, and Matt, 26, has Down Syndrome; both have intellectual and developmental disabilities. Developmental disabilities are defined in law as physical or mental impairments that begin before age 22, are likely to continue indefinitely, and result in substantial functional limitations in at least three major areas of self-care.In spite of these limitations, both of our young men are loved and valued members of our family and community.

Elise and I were finally able to transition David to a home that we bought for him. However, it was a massive struggle to find direct support professionals and a licensed agency to operate the home. Many agencies declined due to inadequate provider rates to serve high-risk residents. We are fortunate to have some resources for this planning but millions of families do not. Matt continues to live with us as we plan his transition. We know that David and Matt will not be able to care for themselves without significant support. We worry about what will happen to them when we are no longer here to take care of them and coordinate and oversee their services.

The Home and Community-based Medicaid waiver is the program that most individuals and families depend on to get the services they need to keep family members at home, get habilitation, behavioral health, and supported employment. However, the only service that states are required to cover is home health. Most other services are optional. States are also permitted to limit the number of people eligible for waivers resulting in waiting lists, that in some states are many years long. In addition, states vary in the way they screen and collect data on waiting lists and they vary in the pay rates for direct support professionals.

Waiting list totals across all disabilities for states are estimated to be over 800,000. Even more troubling, individuals wait on average 39 months to secure services, with reports of some waiting 15 years. There is an urgent need to remedy this crisis as the prevalence of Autism is expected to increase by 15 percent over the next ten years.

New data from ANCOR finds that a significant shortage of direct support professionals has reached catastrophic levels. The longstanding workforce crisis, exacerbated by the pandemic, has led to closures of critically needed services and a denial of access to community-based support. Vacancy rates for full-time direct support positions experienced a 45% increase.

My family experienced this shortage first-hand. During the height of the pandemic, David’s day habilitation services (Hope Springs) were completely closed for 12 months, putting significant strain on working parents. Many of the direct service providers sought employment elsewhere, resulting in a significant shortage of staff. We are so fortunate that Hope Springs Farm survived the crisis, thanks, in part to federal government funding packages. However, due to the staff credentials required for high-risk behaviors, David has not yet been able to return to the day program at pre-pandemic levels.

In all the years I have been involved in the Autism Society, I have never been more worried about the state of our nation’s service system for people with Autism and other developmental disabilities. We receive way too many calls to our hotline related to individuals and families suffering without services. The Administration and Congress must find the political will to help states provide these services.

We have provided recommendations in our written testimony for your consideration. We hope that you will use the influence of this body to do what you can within the agencies around this table to make an impact and to make recommendations to Congress to improve services for those with Autism.

Thank you for your attention to this important issue.

Read the full written testimony here.

The post National Statement: Joe Joyce, member of the Autism Society of America’s Board of Directors, delivered a testimony before the Interagency Autism Coordinating Committee (IACC) appeared first on Autism Society.

September 1, 2022, Rockville, MD — The Autism Society of America is thrilled to welcome Asila Calhoun, Stephen DeStefani, and Tim Goldstein as new members of the National Board of Directors. Their professional backgrounds, advocacy and passion will positively contribute to the strong group of individuals making up the National Board of Directors.

“The Autism Society of America has been focused on board recruitment to add to the diversity of experiences, backgrounds, abilities, and skill sets to best support the organization’s goals,” shares Christopher Banks, President and CEO of the Autism Society of America. ” Through added depth of knowledge and varied perspectives, the organization will be positioned for success to continue to execute its strategic initiatives.”

Asila Calhoun founded Calhoun Coaching and Consulting in 2016. In 2020, Asila left her 25+ year Human Resources (HR) career to focus on her passion for coaching and consulting full-time. Asila partners with leaders who are ready for change. Asila facilitates this change during one-on-one and group coaching sessions with her clients and through her consulting services of delivering leadership training, team facilitation, and diversity, equity and inclusion consulting, training, and coaching. Asila has clients from several industries, including biotechnology/clinical research, healthcare, property management, and law, as well as leaders of non-profit organizations and business owners. Asila earned her Bachelor’s degree in Sociology from UC Berkeley and holds PHR and SHRM-CP HR certifications. She is an Associate Certified Coach (ACC) and a Certified Inclusion Coach (CIC). Asila is also a certified meditation teacher.

“I am honored to join the Autism Society of America board, as my background in HR intersects with coaching leaders to create inclusive workplaces where diversity is celebrated and all employees have a sense of belonging,” states Asila Calhoun.

Stephen DeStefani currently leads the Enterprise Neurodiversity Program across Well Fargo. The program is committed to creating meaningful employment opportunities for a deeply underserved community through accessible and modernized sourcing, selection, and onboarding processes. This capability will allow Wells Fargo to establish a strategic advantage through access to highly skilled, largely untapped talent pools. The program also delivers employee-focused outcomes aimed at enriching the lives and experiences of our employees by creating strong support structures that foster well-being, enhanced accommodations, equity, and inclusion.

“I am honored to join such an incredible group of leaders at the Autism Society of America, where the opportunity to positively impact the lives of others is exponentially improved,” states Stephen DeStefani.

Diagnosed with Asperger’s at 54, Tim Goldstein works for a major tech company, is a Neurodiverse Communications Specialist, and is a Roger Love certified vocal coach. He helps organizations & individuals understand and overcome the Neurotypical Neurodistinct divide. Using his Neuro Cloud™ concept, he explains the Spock-like logical approach common in Autism. Tim has taught his concepts to universities, global companies, groups, and individuals with his book, Geeks Guide to Interviews.

“After years as an Autism self-advocate, I am excited to join the Autism Society of America to help move their focus of acceptance of all people with Autism forward,” states Tim Goldstein.

The post Press Release: Autism Society Welcomes Asila Calhoun, Stephen DeStefani, and Tim Goldstein to the National Board of Directors appeared first on Autism Society.

Rockville, MD, February 3, 2021 –

This is the first time that the Autism Society of America has had consecutive female Chairs leading the Board of Directors. Succeeding Ms. Staley as Chair Elect is board member and Chair of the Strategic Planning Committee, Brian Roth.

Lori served faithfully on the Board of Directors since 2014 , and assumed the role of Chair in 2021. Through her extensive history with the Autism Society, she is most proud of her participation with Affiliate management, and being part of the new brand rollout.  

Lori states, “I have always enjoyed learning about our Affiliates’ work and seeing firsthand the positive impact they have in their communities. It is because of our network’s grassroots effort, that we can serve over half a million people annually.”  

In November 2021, the Autism Society launched a new brand developed with the Autism community, representing the diverse experiences and needs across the Autism spectrum. Ms. Ireland shared, “the new brand is the first initiative we launched from the most recent strategic plan, and it speaks directly to the vital role we all play within our interconnected community. I love the look, the meaning, and the passion that it inspires to further unite and connect the Autism community.”

In making her announcement, Lori affirms that she and her family will continue to be a part of the Autism Society for many years to come.  

Incoming Chair Tracey Staley has a longstanding, successful career as a Human Resource executive, where she currently works with Spirax-Sarco Engineering, plc. Previously, she has held similar positions with the JM Smucker Company, US Steel, Lockheed Martin and IBM where she was responsible for talent strategies and programs. 

“I am honored to serve following Lori Ireland and Joe Joyce who have been terrific advocates, champions and supporters of the Autism Society of America and the Autism community,” states Ms. Staley. 

Tracey has been a leader in many nonprofit organizations, including Chair of the Board of Directors for the Prince William County, VA chapter of the American Red Cross. Ms. Staley currently serves on the boards of the Make-A-Wish Foundation of Western Pennsylvania and West Virginia, and the Foundation Board of the Community College of Allegheny County.

As we look towards the future, Ms. Staley shares, “I look forward to advancing all of the strategic plan initiatives, especially the work the Autism Society is doing to bring about systemic change for successfully employing Autistic individuals.”

Ms. Staley and her husband, Mike, live in Sewickley, PA with their son, Jeff, who continues to inspire her advocacy efforts daily.

The post Tracey Staley Selected as Chair of the Board of Directors for Autism Society of America appeared first on Autism Society.

January 7, 2022, Rockville, MD –  The Autism Society of America is thrilled to welcome SAP leader and Autism at Work ambassador, Jose Velasco, and past president of the Autism Society of Greater Wisconsin, Robert Johnston to the national Board of Directors.

Jose Velasco is a business process intelligence program director at SAP and has been with the global organization for 24 years. Before his current role, he was global co-lead and head of the SAP Autism at Work program in the Americas. His 30-year information technology career spans private and public sectors and companies ranging from startups to Fortune 500 enterprises. Additionally, his professional career has included an ongoing commitment to diversity, inclusion and equity functions; he has participated in various advocacy efforts including World Autism Day at the United Nations, the National Forum on Autism in the Mexican Senate, and at the World Economic Forum. 

“Having a personal as well as a professional affinity with Autism and neurodiversity, I have always been grateful for the tremendous value that the Autism Society adds to our communities. I am thrilled to have the opportunity to serve alongside so many talented and committed individuals whose focus is to positively impact the lives of people on the Autism spectrum”.

“Jose’s advocacy has long been felt within the Autism community. His inclusive and innovative processes through Autism at Work have been instrumental in expanding employment opportunities for those on the Autism spectrum,” stated Christopher Banks, President and CEO of the Autism Society of America. “Jose will continue to be an integral part of our efforts to become a stronger national non-profit organization prepared for growth and scalability while remaining focused on serving the entire Autism community.”

Robert Johnston is a longtime leading advocate within the disability and Autism communities. Following a traumatic pedestrian accident leaving him pinned between two cars, Robert underwent dozens of surgeries and decades of rehabilitation to be able to use his legs and lead an active lifestyle. He understands the challenges faced by those with physical disabilities, and expanded his advocacy for disability rights when his son was diagnosed with Autism. Robert is a past president  of the Autism Society of Greater Wisconsin, a representative of the Governor’s Council on Autism, a member of the Board of Directors of The Ability Center, founder of the Community Resource Network and a member of the Academy of Special Needs Planners. Additionally, him and his wife, invented a “buoyant assistive device” for the learn-to-swim market, to address water safety as drowning is the leading cause of death for individuals with Autism.

“I am thrilled to be joining the Autism Society of America’s Board of Directors and embrace the challenge of being a connection for individuals and families that are affected by ASD,” states Robert Johnston.

“Robert brings a wealth of nonprofit and advocacy experience as a parent, advocate, entrepreneur and business leader  to the Board of Directors,” states Banks. “The Autism Society is committed to expanding our national programs including those for wandering and water safety, and are fortunate to have Robert’s expertise, passion and guidance through this process.”

The post Autism Society of America Announces Jose Velasco and Robert Johnston as New Members to National Board of Directors appeared first on Autism Society.