May 15, 2023, PIX11, New York: Creating long-term care for adults with autism https://pix11.com/news/local-news/new-jersey/creating-long-term-care-for-adults-with-autism/
NEW BRUNSWICK, N.J. (PIX11) — Irisa and Darius Leverette of North Brunswick live a unique life together. Darius is a TikTok star with 1 million followers around the world. He’s 18 with non-verbal autism and a personality that shines.
Like Darius, neurodiverse people under the age of 21 have a guaranteed free public education and often have a host of support services. But in adulthood, their supports and opportunities often diminish. The question his mom asks herself, and what thousands of parents ask themselves, is, ‘How will my child be able to live a happy, productive life when I am gone?’
“That’s what I want for him,” said Irisa Leverette, “a place that he feels safe, a place where he can be Darius, a place where there’s just love. An institution – are they going to have that, or are they just going to have people just working, coming to work? That’s what I worry about,” said Leverette. “We worry about it like, ‘what’s going to happen to our kids? We can never die,’ that’s what we say. We can never die.”
According to the National Institutes of Health, research shows those with autism have a higher chance of living a shorter life.
“The reality of the situation can’t be ignored,” Dr. Christopher Manente, the founding Executive Director of the Rutgers Center for Adult Autism Services. “Our society continues to be hugely discriminatory and ableist in reference to providing fair and appropriate opportunities for adults with autism to achieve their full potential in adulthood.”
Experts say just like we began to develop special education teaching pathways in the 70s, society now needs to develop pathways into careers that help adults with autism.
“Staffing is probably one of the biggest crises facing social services,” Chantelle Walker, CEO of REED Autism Services. “Direct support professionals work incredibly hard. Their work is both physically and emotionally draining. We need to continue to show people it’s a career that is both meaningful and impactful.”
Efforts are spanning from staffing to more innovative options for housing.
“If we look at 1 in 34 individuals [diagnosed as being on the spectrum], they will age out of that under-21 system and as a result, they need somewhere to go and to live and build their own community,” said Karen Fluharty, a mother of an adult son with Autism, and leader of advocate group Parents With A Plan.
She is helping to develop a new, inclusive neuro-inclusive community called Thrive Red Bank, an apartment complex with supportive amenities that are built right into the community of Red Bank. Builders are set to break ground next year.
“Without quality programming, without communities, these individuals run a risk of being homeless, being taken advantage of,” said Fluharty.
At the State level, the New Jersey Department of Human Services says it remains steadfast in its commitment to caring for these individuals. The department said Gov. Phil Murphy’s budget plan, in part, includes, in part, $100 million in investments to home and community-based services, $72 million to help offset inflation for fee-for-service provider rates and $13 million to develop housing options for those with disabilities who are currently in nursing facilities or institutions. The State said it’s also funding training for support practitioners and community health workers.
In the end, Leverette says, the journey starts at home -while the parents are still here- to bring their child into communities and begin to include and involve them rather than wait. “I guess we just have to pray and hope and have faith,” said Leverette. “That’s all we can do.”