How does caregiving begin for people with disabilities? What kind of jobs are available? Jessica Hulter, whose daughter had Rett Syndrome, and Lamarque Polvado, whose CareStarter project was inspired by his daughter's autism journey, spoke with "Enable: The Disability Podcast" about health care services for families with disabilities, the U.S. military's Exceptional Family Member Program and TRICARE, benefits of employing people with disabilities, "the art of possible," and the hardest part of a diagnosis and finding resources.
"We gathered data from (250) families... we had a broad range of diagnoses, and what we learned was 85% of that group described Day 1 of diagnosis as the least helpful event on their care journey," Lamarque said. "I'm like, OK, this isn't something that just happened to me. This is a systematic problem."
Hulter also encouraged others to look past disabilities and treat everyone equally. "I wish it was information and not an identity necessarily," she said. "I wish they could get past staring at things that are weird or being uncomfortable around things that are different... We don't arrive here good advocates. We're a hot mess and we learn through grit and coming every single day and failing and getting better."
CareStarter and Feedback are part of Professional Contract Services, Inc. (PCSI), which seeks to enhance the lives of people with disabilities through employment, advocacy, partnerships and innovation. For more information, visit https://www.pcsi.org/
“Enable: The Disability Podcast,” which highlights amazing people with disabilities and different abilities, releases new episodes weekly on YouTube and all major podcast platforms.
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Note: Views expressed in this podcast do not necessarily reflect the views of Advance Local.
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