Ka Wai Ola - Office of Hawaiian Affairs, Volume 40, Number 10, 1 October 2023 — Prologue to a Spectrum of Hope Intellectual and Developmental Disabilities [ARTICLE+ILLUSTRATION]

Prologue to a Spectrum of Hope Intellectual and Developmental Disabilities

V KULEKELE AUPUNI V ^ PUBLIC POLICY ADVOCACY *

By Zuri Ka'apana Aki, Makalani Kupau Hyden and Melvin Maka Masuda The tried-and-true formula for almost every superhero story begins with a seemingly unremarkable person who is chosen, by ehanee or destiny, to carry a mantle

of hope in a hleak and weary world becoming the ehampion of the vulnerable for a cause mueh greater than themself. You'll want to hear this superhero story.

The year is 2023. Humankind faces numerous existential threats to their very existence on Earth. As the world scrambles to defend itself against the most formidable of perceived menaees, villainy slinks within the shadows of the unsuspecting. Thriving off egocentrism and fueled by greed and selfishness, this dastardly villain picks off its victims. One. By. One. One-by-one until entire families fall. One-by-one until entire communities fall. One-by-one until societies fall. This villain knows that a community divided is easy prey. It strikes, then retreats

into the darkness, leaving little trace of its crime: fear, worry, anguish, and suffering. It waits for its next opportunity. 'Agents of Advocacy" are on the move, tracking what little evidence they ean find. Their reports are outdated and sparse, but string them together and it begins to form a narrative: Native Hawaiians are disproportionately represented among the victims and, thus, are facing greater inequities and disparities. One agent scans a 2015 report and reads, "39.1% of students enrolled in a Special Education (SPED) program compared to representing only 26.0% of the total puhlie school population." That's the majority of SPED students. The agent continues, "the number of children with autism between the ages of 3-12 receiving special education services in Hawai'i Department of Education (DOE) schools rose from 2% in 2000 to 8% in 2015." The agent surmises that there is clearly an issue with diagnoses and a more accurate and updated report would reveal a mueh larger number of vulnerable children. Another agent digs through scattered reports and, holding the 2014 report to the light, reads, "11.2% of Na-

tive Hawaiian and Pacific Islander children experienced at least one intellectual and developmental disabilities (I/DD), and almost one third of these children reported more than one I/DD." That's roughly 17,000 children experiencing I/DD. This is just one moment of a person's life. What about life after school? How many have already been left behind? A third agent has a somber message that resonates among the others: the current system is not working. It's broken. Or maybe it wasn't designed to protect. Its dysfunction creates dark zones, gap areas devoid of light that exacerbate and worsen the vulnerability of our most vulnerable. We need to fill the gap and stave off the villain.

"We need a hero," the agent says. "No," the agents realize. Not a hero, but rather, heroes. The darkness is expansive. These gaps are numerous. They're riddled throughout every facet of our lives. But we are greater. We are stronger together. "Ua lehulehu a manomano ka 'ikena a ka Hawai'i." Great and numerous is the knowledge of the Hawaiian people. In this moment, the agents knew that the system needed to be redesigned with the purpose of adequately addressing the needs of our most vulnerable through every stage of life.

It needs to uplift and empower individuals and 'ohana that experience these challenges. It is imperative that culturally appropriate ways to help, support, and protect ourselves and eaeh other need to be re-established. They knew that it would take as many of us as possible - together - to rise as heroes for this cause. The "Agents of Advocacy" set off to find their heroes. ■ The State ofHawai'i has recognized the month ofOctober as Disabilities Awareness Month. OHA's Public Policy Program has launched a majorpolicy campaign to address the needs ofindividuals and 'ohana experiencing intellectual and developmental disabilities. We know this is huge, and we're dedicated to this endeavor. For more information on OHA's Intellectual and Developmental Disabilities campaign, please reach out to OHA's Puhlie Policy Manager (Advocacy) Zuri Aki at zurica@oha. org. For more information about how to getdirectly involved with other 'ohanafacing these challenges, please reach out to Makalani at makalani@apoakea.org or visit 'Apoākea at www.apoakea.org.

An nrtistic rendering of co-nuthor Makoloni Kupau Hyden's children, two of whom are on the outism spectrum.