Neurodiverse Youth Need A Place To Call Home

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Karen Fluharty, founder of Parents With A Plan, and her son Ryan hope to see a 32-unit supportive apartment com- plex built in Red Bank, where neurodiverse residents can easily access amenities and more.
Karen Fluharty, founder of Parents With A Plan, and her son Ryan hope to see a 32-unit supportive apartment com- plex built in Red Bank, where neurodiverse residents can easily access amenities and more. Courtesy Karen Fluharty

By Judy O’Gorman Alvarez

RED BANK – Karen Fluharty, a single mom, has long worried about what the future holds for her son Ryan, 20, who is on the autism spectrum.

Fluharty grew concerned – just as countless other parents in similar situations have – wondering what her son’s next step would be. “I started learning about the landscape of what’s out there and what happens after 21,” she said.

The term for what happens to young adults with similar diagnoses when they reach the age of 21 is “falling off the cliff,” Fluharty said. “Because at 21 they age out of their local board of ed services that are provided to our neurodiverse kids when they’re still in the school system.”

She “started on a journey,” she said, looking at what programs and opportunities were available for adults aging out of the system.

“And what I found was really frightening,” Fluharty said. With the exception of one program across the country she found nothing appropriate for her son.

“This is an area that really is underdeveloped,” said Fluharty, who is in the real estate business. “There really is no market for these young adults that fosters independence, that creates engaging, inclusive community lives.”

According to a report released in December 2021 by the Centers for Disease Control and Prevention (CDC), 1 in 44 children nationally and 1 in 35 in New Jersey are identified with Autism Spectrum Disorder.

For many, instead of graduating from a school program to independent living with career or further schooling prospects, Fluharty said, “we have a saying, essentially at 21, they graduate onto the couch.”

The statistics prompted Fluharty to form Parents With A Plan (PWAP), a 501(c)3 organization made up of families and legal and housing professionals working to find housing solutions for special needs young adults. They embarked on a private market study, surveying neurodiverse individuals and their parents and caregivers about their needs.

“We wanted to understand their needs. We also want to review what their fears and their hopes and their dreams are,” she said.

Among the findings:

• More than 200,000 in New Jersey are neurodiverse or have an intellectual or developmental disability – twice the capacity of MetLife Stadium;

• 73% of neurodiverse individuals in New Jersey are currently living with aging family;

• Lack of transpiration was the No. 1 barrier to access and engagement in their communities.

“We started looking at communities around the state,” Fluharty said. “We know that one of the most critical issues for our neurodiverse population is transportation. Only 10% of our population drive.”

So they focused on communities that were inclusive and well connected. After looking at neighborhoods in Bergen and Somerset counties and other locations, Red Bank hit the group’s radar.

“When you look at the connectivity of Red Bank, and the philanthropy of Red Bank,” said Fluharty, citing programs and organizations such as Lunch Break, the Parker Family Health Center, Riverview Medical Center, the YMCA, Red Bank seemed like the perfect location.

“And the fact that there are over 100 places for retail jobs for our residents – we really felt that Red Bank provided that inclusive, connected community that our young adults who don’t drive will be able to access and be a meaningful part of the community, through volunteering, through jobs, through all of the amazing things that they can do.”

Plans are now being developed to build a 32- unit supportive apartment building in Red Bank. The proposed project will include 30 one-bedroom apartments and a first floor that is all amenity driven.

“Those supportive amenities on the first floor would include a 24/7 concierge that’s staffed by a behaviorist to help our residents problem-solve,” said Fluharty. A teaching kitchen will provide a place for residents to learn cooking skills, nutrition and other skills. Also included would be a health and wellness area to foster “all of those other elements that create a quality independent life,” she said.

A collaboration between Rutgers University’s Center for Adult Autism Services and Parents With A Plan will provide opportunities for Rutgers students to have hands-on experience while pursuing careers in the adult services field. A multipurpose room would serve as a virtual classroom for those students. “So we’re creating a path of very experienced, real world people that are building a career in adult support services for the neurodiverse,” Fluharty said.

As a neuro-inclusive apartment building, applying residents will need to have a clinical assessment. “Our goal is making sure that we’ve got young adults who can safely live in this environment,” Fluharty said. “We are not a licensed group home; we’re not assisted care and we’re not one-on-one. So we need young adults who have the ability to learn, that have some self-care skills. Perhaps they can cook a simple meal but need help with learning how to grocery shop and budget,” she explained.

In addition to the clinical assessment, an amenity fee will provide for staffing, including specialists, front desk and community engagement directors. Some of the costs could be covered by the New Jersey Division of Developmental Disabilities.

“This will be the first of its kind in New Jersey and we’re very proud of the work that we’ve done to get to this point,” Fluharty said, “but we’ve got a lot of work to do ahead of us.”

Although she is not part of Parents With A Plan, Ellen Ashinoff of Fair Haven has the same goals: “To develop programs, housing and wraparound services for (this) young adult population.”

Her 18-year-old son Brett attended Fair Haven’s public schools until high school when he needed more vocational and independent living skills. He now attends a residential program.

“Obviously, that’s all we think about is who’s going to take care of Brett and what’s he going to do when I’m not around to organize his day and his life?” she said. She and her husband want to ensure that their two younger daughters, who will always be a part of their brother’s life, will not have to care for him.

“We want (his life) to be as fulfilling and purposeful as possible,” she said. “I want to set them all up for the best life that they can have.”

Ashinoff has visited programs around the Northeast. She cites Oasis in Middletown as a great model that’s already in place. “It’s a home and it’s warm and inviting and they have a farm and animals and they do all sorts of job skills and community outings. And so, looking at their model and bringing more of that to Monmouth County and to the Red Bank area is so vital.”

She points out that young men and women want to be involved with their community, whether through volunteering or socializing. “But most of them need some kind of living support, some kind of supervision either overnight or providing medical care or medicines,” Ashinoff said.

“I hope our community embraces more and more of our young adults,” she said, pointing out Coffee Corral in Red Bank and No Limits Cafe in Middletown as two businesses employing people with differences. “I hope this is the trend. I hope more and more businesses in Red Bank and Fair Haven and Rumson and Tinton Falls and all around us, I hope they all hire more and more of our young adults because that’s what needs to happen for everyone to be fully included into our community.”

The article originally appeared in the November 17 – 23, 2022 print edition of The Two River Times.