17 Jan $12 Million Community Planned For Young Adults With AutismJanuary 17, 2017
By: Sabriya Rice
Source: Disability Scoop
A Texas couple is planning to construct a $12 million community for people with autism on nearly 29 acres of land that was formerly a polo ranch in the Denton County town of Cross Roads.
It will include 15 homes, a community center and access to a ‘transitional academy’ that is designed to help young adults with autism develop the skills needed to live and work independently.
Clay Heighten, a retired emergency doctor and founder of a real estate management company, and his wife Debra Caudy, a retired medical oncologist, are leading the project.
The inspiration is their 19-year old son, Jon, who is on the severe end of the autism spectrum and requires a high level of supportive care.
Both worry that people like Jon have little options as adults. “It’s about offering a choice,” explained Heighten.
“We’re trying to create something that would provide an enriched quality of life, so that people like Jon eventually require less supervision,” he said.
In October 2015, the couple invested $745,000 to purchase the land, and last year created a nonprofit called 29 Acres to raise money for the project.
They have had $1 million committed, predominantly from a handful of other North Texas families who also have children with autism. The hope is to break ground on construction by the fall.
Aging with autism
Though early in its development, the project is already catching the attention of local and national autism experts, who say there is demand for innovative models to help transition children with autism into adulthood.
Dr. Patricia Evans, a pediatric neurologist and neurodevelopment specialist at the Children’s Health Center for Autism and Developmental Disabilities in Dallas, and others say that as research and supportive services have proliferated for children, not enough emphasis has been put on the “oncoming onslaught of adults” especially those on the severe end of the spectrum, who are going to need help.
About 50,000 students with autism exit high school each year in the U.S. and an estimated half million will enter adulthood over the next decade, according to a 2015 report from the A.J. Drexel Autism Institute in Philadelphia.
The lifetime cost of supporting an individual with autism is $2.4 million if the person has intellectual disability, and at least 40 percent do, according to a 2014 study in JAMA Pediatrics. Health care economists estimate the yearly cost of autism in the United States is $236 billion.
The CADD center at Children’s Health recently formed a multi-disciplinary clinic to transition young adults from pediatric clinicians to adult-based primary, mental health and other specialists. The growing demographic has led to focus on needs beyond medical expenditures.
Residential care, supportive living accommodations and productivity loss account for some of the highest costs. “The employment and housing situation for people with autism lags way behind,” said Michael Bernick, a fellow with The Milken Institute, an economic think tank.
About 87 percent of young adults with autism live with a parent at some point after high school, compared to about 21 percent of all young adults. Compared to young adults with other types of disabilities, fewer on the autism spectrum have a paying job between high school and their early 20s.
Bernick anticipates more attention in coming years as people with autism seek to integrate into mainstream life. “Separate communities can play a role, especially for the more severely impacted,” he said. “There is no dearth of adults on the spectrum who would be interested.”
A passion project
The founders of 29 Acres hope the community, situated on a plot of land just south of U.S. Highway 380 in Cross Roads, will fill in some of the gaps.
The initial design includes space for a 7,100-square-foot community center, and 15 homes of around 3,000 square feet that can be divided into duplexes or quads and house 56 people.
Four homes will be built during phase one, and the first set of residents could move in by 2018.
When complete, the complex will employ about 200 full- and part-time staff, including security guards, administration and one-on-one specialists who are experienced in living with and caring for people with developmental challenges.
The town of Cross Roads is on the cusp of a suburban transformation and that was part of the appeal for Heighten and Caudy.
They wanted a location where the autism community could feel safe but also have access to the surrounding community and not feel isolated.
There are plans to build a bus stop near the property and make ride-sharing services like Uber and Lyft available so that residents can get to work, grocery shop and feel a part of the community.
A key feature of 29 Acres will be a transition program that could cost upwards of $50,000 per student. The hope is that scholarships will offset much of the cost. The academy is designed with the support of Jeff Ross, founder and director of a similar transition to independent living institutes in Arizona and California. This will be the third project he’s assisted in building.
“To me, that’s the way you advance best practices — by collaborating with people who are already using a curriculum with a proven track record,” Caudy said. “That way we can pool our resources and increase the cohort to make better determinations on outcomes.”
In fact, identifying best practices was a key priority of the Autism Cares Act, signed into law in 2014. It called for proposals on programs that would help transition young adults with autism from existing school-based services to adult services.
The local academy aims to work with nearby academic institutions to employ graduate students and fellows to participate in research that improves outcomes for young adults with autism.
Finally, the property may bring on businesses like Smile Biscotti, a bakery founded in Arizona in 2013 by a young adult with autism.
Jon Heighten has been baking, packaging and selling it from home after his parents launched Smile Biscotti DFW in November.
Need for options
While promising, experts note that when it comes to autism there is no one-size-fits-all approach.
The range of what is considered success for someone with autism is just as diverse as the condition’s wide-ranging spectrum. Trying to live alone or hold down a job may not be the best option for everyone.
“Just because they can live alone, doesn’t mean it’s a good thing,” Evans said.
Depression and isolation are common issues for people with autism. Over one-quarter of adolescents on the spectrum also tend to wander, or impulsively leave a supervised situation, increasing the risk of getting lost.
Residents at 29 Acres will be screened to evaluate their level of need. They will be involved in the design of their own program and be able to make determinations about where they see themselves down the road.
Not everyone will be a good candidate for an independent-living program, but they will still be able to live on the property, with professional support for their unique needs.
Jon Heighten, for example, will never be able to live completely on his own, his mom explained. One can get a sense of the challenge some families face when they have children with autism while watching Jon go about his day.
He doesn’t speak much, but sometimes repeats back what is said to him. “Happy birthday!” he excitedly responded to those wishing him well during his party in December.
He’s thrilled about tackling projects and smiles brightly when someone praises his good work. It’s not uncommon for him to stand and suddenly leave a room, wandering off with no clear destination.
Not surprisingly, parents are often the first to come up with creative solutions to manage. Evans is aware of other families who have children with autism in North Texas who have collectively purchased homes together. They share the space, like a co-op, working together to support one another.
There are many recent efforts to assist people with autism in finding work, according to Bernick. They include targeted hiring by large employers, the launch of autism-focused small businesses and internet-based creative programs.
“But we need a wider range of options,” he said, noting that he too became involved in the autism community when his son was diagnosed in 1991. “All of us parents have the concern,” he said.
Jon Heighten turned 19 last month, but his parents got the idea to start 29 Acres when he was in his early teens. That’s when they began to look for housing and employment options diverse enough to meet his needs if they were no longer alive to take care of him.
“We couldn’t find anything. So we just decided to do it ourselves,” said Caudy, who is 59. “We want to do it not just for him, but for many of the others out there like him. The need is enormous.”