13 March 2024
WICHITA, Kan. (KSNW) – Aldona Carney’s motto is “Advocate like a mother.” Her son Neil is 29 and has severe nonverbal autism. He needs 24/7 awake staffing and will need the same supports and services his whole life.
Carney says her son has a lot to say to those who truly listen.
“I’m his voice,” Carney said. “But again, he’s my heart. I love being an advocate for him.”
She says it’s hard to get adult services after they graduate school.
“For me, the hardest part about having a child that has any delay of any kind is the fight,” Carney said. “It’s the constant fight for services. It’s overwhelming and exhausting. You feel like you’re in a constant battle for them to have their best life and live a good life. Neil graduated back in 2016 from Levy Special Education. Just because he graduated from the special ed school didn’t mean that he was magically cured of autism. He’s going to need the same level of supports and services for his entire life. And for people with developmental disabilities, they need to have that as they go, as they transition into adulthood.”
Just like her son, she says everyone in his community is unique and wants to live their best life.
“For my son, he loves to be outside,” Carney said. “He loves to swing. He likes to eat. He just is a fun-loving guy at times, but he also has very extensive needs in that he needs a whole group team to support him because of his extensive needs. And I’m blessed that we do have services, but there’s so many that don’t have services. As far as Neil goes, we support him in any way we can. But I’m so grateful for the direct support professionals that help to take care of him because they literally have his life in their hands.”
Carney says the reason it is so important to her is because she won’t be here forever.
“I think the greatest fear of most parents that have a child with special needs is what’s going to happen to them when we’re no longer here,” Carney said. “Who’s going to take care of their needs? It’s it’s very daunting to think about that. So I’m trying my best to have the services, wrap-around services in place for him. Like I’ve always said that I hope that Neil is always treated with dignity, kindness and respect and that I live to be 100.”
She says although she feels blessed to have some of the services he needs, she fights to keep them.
“I’m so proud of Neal because he overcomes so many challenges that we really don’t even have a clue,” Carney said. “I mean, his anxiety levels and things that he goes through every day would floor most of us. He’s non-verbal, but I can tell when he’s anxious, and I’m so proud of him for moving forward. And you know, he does well when he’s on a routine, and he’s scheduled and has less anxiety. This is a population that a lot of them don’t have a voice. And we need to be a voice for them, even if it makes us feel uncomfortable. Put yourself out of that, you know, uncomfortableness and talk about them. Give them a voice. They deserve it.”
Kevin Fish, the executive director of AbilityPoint, says nearly 15,000 people in Sedgwick County have a developmental disability.
“Just like everybody else, they have hopes, dreams, aspirations,” Fish said. “Their parents want the absolute best for them in their lives.”
Fish says Developmental Disabilities Awareness Month gives them a chance to celebrate success while also bringing attention to the obstacles they face, and the community can come together to support them.
“There is still a very lack of supports and services in the community because agencies need to be able to hire staff, and hopefully, we’ll see people in the community say, ‘I do see this as a wonderful potential career that I could come out, I can help somebody, impact their lives in a positive way,'” Fish said. “Sometimes people don’t see that as a career path, but I think so many have got involved. They fall in love with the individuals and what they’re able to do. And so we hope people will come out and try to be a part of that.”
He says inclusion goes a long way.
“There’s always places where we want to make sure that everybody feels included, whether it’s your house of worship, whether it’s at work, at school,” Fish said. “If you see somebody encouraging them, supporting them, letting them know that they’re included and that you really value who they are as a human because I think sometimes they feel very separated. And I think we’ve really worked as a community to be able to improve and change that. But still, everybody wants to feel valued. And so if you have a coworker, you know, how can you support them, encourage them, welcome them into conversations. Because again, the more social opportunities they have, the more they’re going to grow and thrive in whatever they do.”
He says there are over 1,000 people in the community on a waiting list for supports and services and 1,000 more who haven’t even begun that journey. There isn’t enough staff or funding to fill all the needs.
“I think it’s important for people to realize that we need to continue to make progress in these areas because, like Aldona, many of our parents, they are looking for supports that they know will be there when their child is gone,” Fish said. “There’s nothing more concerning for a parent than feeling like their child is not going to be able to succeed, that they could get hurt, that they could be lost and worrying about what will happen when they’re gone. And so if we can get them the supports wrapped around them, it can change things. And that’s that’s what our advocacy is about. That’s what so many of our organizations are about is to be able to wrap around and support those families.”