From Being Special Needy’ to Special ‘Needed’—Interview With Maui Hope

 From Being Special Needy’ to Special ‘Needed’—Interview With Maui Hope

By Kami-Leigh Agard

How can we as a society unlock the stigma of individuals with autism and other disabilities of being special “needy,” to opening a new world, in which they are special “needed?” In part two of this spotlight on Maui Hope, the nonprofit’s executive director, Andrea Rodgers, sheds light on how her 30-year-old autistic son, Ian, taught her why relationship building is the key.

Maui Hope is a 501(c)3 nonprofit Hawaii Department of Health licensed Medicaid Waiver provider dedicated to supporting autistic adults with a full life through meaningful relationships and productive opportunities. Since the August 2023 wildfires that decimated Lahaina, a small town of 12,000 residents on the island of Maui, the nonprofit banded to come to the aid of still-displaced families of autistic children. For examples, Maui Hope presented checks to families for the purchase of vehicles, donated air filters, and more. After reaching out to Rodgers, Rockaway Beach Autism Families was gifted the opportunity to ship holiday presents for Lahaina’s autistic children. However, most noteworthy is how Maui Hope puts autistic adults, like Rodgers’ son, Ian, at the forefront of relief efforts—thus transforming their collective identity from “needy,” to “needed.”

Rodgers shared that her founding of Maui Hope was inspired by her son’s experience as a resident of The Camphill School, a Pennsylvania private academic school for children with intellectual and developmental disabilities.

“When Ian entered Camphill at the age of 15, his whole life changed. They had him out of diapers within the first three months. He was learning to eat with a knife and fork. So, if I was to characterize what propelled Maui Hope, it’s really Camp Hill’s focus on relationship building. ABA (Applied Behavioral Analysis) for young children, even those non autistic, makes sense because as their brains are still developing, you’re rewarding them for a positive behavior. However, as children get older, rewards-based approaches could be demeaning to their self-esteem.

“If my husband made the bed, and I said, ‘You made the bed. Good job!’ He would like at me like I was a nutcase. So, why do we continue to do this to our adult autistic loved ones? How do we not feel that it’s impacting their self-esteem? After moving here to Maui, we eventually rented a house for Ian with two caregivers, who we called his ‘roommates,’ and set out on this course of Maui Hope,” she said.

Rodgers then delved into why the title, “caregiver” can be demeaning to an autistic adult, thus affecting their self-esteem.

“I suddenly noticed that my son had a low self-esteem. We don’t think about that when somebody has a disability. With all the best intentions, we constantly are telling somebody with special needs that they’re less than. For example, we talk over them in a conversation.

“Even with the most love in our hearts and wanting the best for them, we do things in our day to day that are not building their self-esteem. What is the potential of recognizing them as a whole person with a disability, instead of just a disabled person? And I’ve found that when we focus on relationship building and share our lives on a greater level of equality, it leads to them having more self-esteem and doing things that we would never have thought they were capable of.”

Rodgers also believes that relationship building should be extended to hired caregivers.

“At Maui Hope, we downplay the staff-client thing, and focus on forging meaningful relationships. A caregiver implies that my son is always going to have to be cared for. Now my son is obviously never going to live independently, but he’s very capable in numerous ways. If there’s a philosophical decision made in the approach to services, then I find that the quality of the relationship is stronger, and the person that’s being paid is more likely to stick with the job because it’s a more meaningful experience.

“Even before the fires in Lahaina, my thought process was to shift out of this concept of special needs to creating an ordinary life. Maui Hope fosters relationship building because out of true friendships come something miraculous.”

RBAF’s next family support group meeting is Thursday, February 15, 7 p.m. at Knights of Columbus (333 Beach 90th Street). For more info, visit: Rockaway Beach Autism Families on Facebook/ Instagram.

Related post

Leave a Reply

Your email address will not be published. Required fields are marked *