More than 60,000 Arizona children are estimated to live with intellectual and developmental disabilities (IDD), and as they age, some of their parents are increasingly taking matters into their own hands to ensure a safe and healthy future for their kids.
Denise Resnik, the founder, president and CEO of First Place, a new apartment-style living complex for those living with IDD, is one of those parents.
Resnik’s own son, Matt, has autism and Resnik feared for what her son’s future held. “I feared where he might live because at that time after his diagnosis we were told to love, accept and plan to institutionalize him — and going to those institutions, it made my skin crawl,” Resnik told KJZZ.
Using her background in real estate, Resnik and her partners studied more than 100 options before creating First Place, which she says was intended to be “innovative and disruptive,” because “we’re talking about an unprecedented number of children with autism entering adulthood this decade,” she told KJZZ.
Compounding matters is that the prevalence of children diagnosed with developmental disabilities is on the rise, according to a 2017 report from the Centers for Disease Control and Prevention. From 2014–2016, the prevalence of children aged 3–17 years who had ever been diagnosed with a developmental disability increased from 5.76% to 6.99%, according to the report.
The number of children diagnosed with autism spectrum disorder, which falls under the umbrella of developmental disabilities, is also on the rise, according to the CDC.
Arizona does a better job than most states of serving individuals with intellectual and developmental disabilities (IDD) and was recently ranked as the number one state in the country in efforts to serve those with IDD, but issues are still prevalent.
Parents of children with IDD deal with waiting lists for services and housing according to the organization Autism Speaks, and as the number of Arizonan children with IDD rises, the already-present gap between patient needs and what the state has to offer is likely to increase.
Resnik hopes that projects like First Place will help fill that gap, while also providing resources for adults with IDD after they age out of being eligible for government resources. “Part of the challenge of being a parent with a child on the spectrum, is what happens after 21 and candidly all of the support systems from the government or the school system, those fall off a cliff,” Resnik said.
First Place residents can live in their own rental apartment, with or without roommates and have opportunities to volunteer, work, sign up for academic lessons, and develop relationships.
Resnik’s model, which took 20 years to come to life, has received the support of Mike Trailor, the outgoing director of Arizona’s Department of Economic Security.
“The general services we provide, I think are effective,” Trailor said of DES. “There are people with greater needs that I think we’ve in some cases failed to meet their needs, and these more innovative approaches are filling that gap.”
DES estimates that there are 42,000 Arizonans with IDD who receive services such as housing support, but that leaves roughly 80,000 Arizonans who live with IDD who do not receive housing support from the state.
Resnik isn’t the only parent who decided to take her child’s future into her own hands. Mark Roth developed the Luna Azul property in north Phoenix in part to provide a home for his 19 year old daughter, Emma, who has a developmental disability.
“I didn’t want my daughter to live in a place I wouldn’t choose to live in myself,” Roth told KJZZ. “And there is nothing like this that we found anywhere in the country,” Roth says of his four and a half acre development which will include 30 homes.
Luna Azul is different from First Place in one significant way: it’s for buyers, whereas residents at First Place are renters.
Roth is paying just over $400,000 for Emma’s house and a monthly HOA fee of $1100, which will cover the cost of a community director, staff and maintenance of common areas, according to KJZZ.
Despite the need for more housing and resources for those with IDD, the steep price tags of Luna Azul and First Place, where rent starts at $3,600 per month, has raised concerns from advocates like Jon Meyers, the executive director of the Arc of Arizona, a disability advocacy group.
“I don’t think it’s too much to say that we’re creating a system of haves and if not have-nots, have-lesses within the IDD world,” Meyers told KJZZ. “The vast majority of people who have an intellectual or developmental disability do not have those kinds of resources.”
Mike Trailor, the director of the Arizona DES, acknowledged that cost could remain a barrier for families and says the state is evaluating ways to support the development of communities like First Place and Luna Azul.
Despite the concerns about affordability, Trailor does not believe fear should hinder progress. “We have to innovate, we have to try new things because we’re certainly not providing the services to people with disabilities that they desperately need in a lot of cases.”