About Us

Jessica McCullum advocates with the intention of representing the direct needs of her daughter, Ava, and fiercely demonstrates these needs on behalf of Ava Sofia Foundation DBA Autism Moms of Kona.  Ava is a beautiful, vibrant 12-year-old non-speaking young lady with Profound Autism.

Jessica is a Hawaiʻi-based nonprofit executive and disability systems advocate recognized for her work supporting families affected by autism and lifelong developmental disabilities. Her advocacy focuses on lifespan needs, including education, healthcare access, caregiver sustainability, housing, and adult services.

Her work is informed by lived experience as the parent of three children on the autism spectrum, including a profoundly autistic, non-speaking child with lifelong support needs. This perspective shapes her systems-level approach to disability advocacy beyond early childhood.

The Ava Sofia Foundation is a community-based nonprofit organization serving families affected by autism and developmental disabilities on the Big Island of Hawaiʻi.  They are more widely known as Autism Moms of Kona, which was founded by a mom raising child on the autism spectrum, and through the support of her best friend, Erin Zimmerman.  Moreover, Jessica has discovered her own neurodivergence and has received a late diagnosis of Autism at the age of 37, and moves into systems change as a self-advocate but continues to place an emphasis on the needs of those with profound disabilities who will require 24/7 care for the rest of their lives.

Autism Moms of Kona operates out of Kailua-Kona Hawaiʻi and provides services for the entire community, while maintaining priority on those individuals that are Qualified Members – see https://autismmomsofkona.com/members/ for more information on how to become a member.  The infrastructure of this organization was built to scale, serving communities on a local, culturally-relevant level with the ability to emphasize a variety of programs based on the specific needs and demand of that community.  The second chapter, the Ava Sofia Foundation – Hilo Chapter, is led by Anne Jose, the Lead Event Coordinator serving the East Side of Hawaʻi.

The organization provides family support, education, advocacy, and community programs with a focus on inclusion, equity, and long-term sustainability for individuals with disabilities and their caregivers.

Autism Moms of Kona centers families who are often underserved by traditional systems, including those caring for individuals with profound, complex, and lifelong disabilities. Its work emphasizes real-world family sustainability rather than short-term or childhood-only interventions.

The organization addresses gaps that occur as individuals age out of pediatric services, focusing on transitions to adolescence, adulthood, and long-term care planning in rural and island communities.

They inspire creativity and collaboration with small businesses within the community, battling isolation and encouraging integration.  They have achieved this by curating immersive and engaging experiences that provide education & awareness, access & accommodation, and engagement through their collaboration.  Ultimately, these experiences enhance compassion, responsibility, and a collective experience all focusing on sensory and nervous system regulation.

In doing so, all that are involved benefit including the caregivers and volunteers, building a flywheel built on social responsibility, and empathy, and tackling barriers such as burnout, isolation and depression.

Autism awareness focuses on recognizing autism as a diagnosis, often through symbolic campaigns or informational outreach. Autism acceptance goes further by addressing access, inclusion, and meaningful support across all stages of life.

Acceptance prioritizes accommodations, services, and systems that allow autistic individuals — including those with high support needs — to live with dignity, safety, and belonging within their communities.

The importance of both is recognized and used in varying circumstances depending on the audience and purpose of the event / advocacy.

Families in rural and island communities often face limited access to specialists, long waitlists for services, geographic isolation, and a lack of coordinated adult supports. These challenges are compounded for families caring for individuals with profound disabilities.

Transportation barriers, workforce shortages, and fragmented systems make it difficult for families to access consistent care, respite, and long-term planning resources.  The existing service providers also experience unique challenges due to these barriers and in consequence operate in siloes.

In many regions, including Hawaiʻi, formal support systems significantly decrease after childhood, leaving families to navigate adult services with limited guidance. This creates increased caregiver strain and long-term instability.

Advocacy efforts led by community organizations aim to address these gaps by promoting lifespan planning, adult services development, and policies that recognize the needs of individuals with profound autism beyond early intervention.

Caregivers are the primary support system for many individuals with lifelong disabilities. When caregivers lack respite, financial stability, or systemic support, both the caregiver and the disabled individual are at risk.

Sustainable disability systems must account for caregiver health, economic security, and long-term planning to ensure continuity of care and community inclusion.

Lifespan autism support refers to services and policies that address the needs of autistic individuals from early childhood through adulthood and aging. This includes education, healthcare, housing, employment (where appropriate), and long-term care planning.

Lifespan approaches recognize that autism does not end at age 18 or 22 and that families require consistent, coordinated support across decades.

Advocates with lived experience bring practical insight into how systems function in real life, not just on paper. This perspective helps identify service gaps, unintended consequences of policy, and barriers families face daily.

When combined with systems knowledge, lived experience allows advocacy to translate into actionable, community-based solutions rather than abstract recommendations.

Effective support requires investment in lifespan services, caregiver supports, workforce development, and community-based models that function in rural and island environments.

Policies and funding strategies that prioritize coordination across education, healthcare, housing, and social services create more stable outcomes for individuals with autism and their families.

The Ava Sofia Foundation positions itself as grounding presence in the discussion, and proposes creative ideas and solutions that represent the lived experience of families facing these challenges.