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Survey asks individuals with disabilities how state can improve

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The Hawaiʻi State Council on Developmental Disabilities is conducting a survey to inform and shape how the state can meet the needs of those with intellectual or developmental disabilities.

It asks 50 questions ranging from an individual's living situation, access to health care, and the types of support services they receive.

"There are 23,000 individuals with intellectual and developmental disabilities in the state," said Daintry Bartoldus, the council's executive administrator.

She says roughly 3,000 people are supported through the health department's developmental disabilities division.

"So we know there's about 20,000 individuals out there that may need our support and assistance to prevent any long-term concerns."

The pandemic showed the state it didn't have the support outreach to those with disabilities, Bartoldus tells HPR.

"We realized we didn't really have our own database on how to outreach to these individuals to ensure their needs are being met," she said. "So this survey, we're hopefully going to capture information of what's working and what's not working.

"Instead of being reactive, we really want to be proactive," she added.

The survey is confidential and requires no identifying information to complete. It should only be filled out once for each individual with a disability.

Caretakers, educators, support workers or family members can assist individuals to take the survey. But Bartoldus advises these individuals should complete the survey through the lens of the person with the disability/disabilities.

Those invited to the survey are people diagnosed with and not limited to:

  • Autism spectrum disorder
  • CHARGE syndrome
  • Cerebral palsy
  • Epilepsy
  • Fetal alcohol spectrum disorder
  • Fragile X
  • A genetic defect
  • Down syndrome
  • Intellectual disability
  • Prader-Willi syndrome
  • Spina bifida
  • Williams syndrome

The last day to participate in the survey is Aug. 3, 2022. The survey can be found at surveymonkey.com/r/HSCDDsurvey.

For more information on the Developmental Disabilities Council's needs assessment survey or to request a copy of the survey via mail, call 808-586-8100 or email HSCDDsurvey@gmail.com.

Casey Harlow was an HPR reporter and occasionally filled in as local host of Morning Edition and All Things Considered.
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