Parents of adult children with disabilities work to fill housing gap

Luke Humble and Conor Gunderson have settled into a comfortable rhythm since moving into their own home in Phoenix three months ago.

Humble, 26, says he likes eating breakfast with his best friend before they go their separate ways to work.

“Conor goes to Fry's,” said Humble, referring to the supermarket where Gunderson, 24, organizes produce. “I go to the cafe in the morning.”

The two spend most evenings with a habilitation provider, who is teaching them skills for living independently.

Humble and Gunderson, who have been buddies for five years, both have Down syndrome and are among the first residents of Luna Azul, the latest example of housing developments for adults with disabilities spearheaded by their greatest advocates: their parents.

For caretakers, the inevitable question of where to place their children with disabilities when they are no longer around can be scary and overwhelming. But some are literally breaking new ground in finding an answer. Parents in Arizona, Wisconsin, Maryland and other states have become the architects of their children's futures.

One reason: Social media and online resources are inspiring parents to look beyond the status quo, said Desiree Kameka, director of the nonprofit Autism Housing Network, which maintains a list of U.S. residential opportunities for people with intellectual and developmental disabilities. It shows nearly 50 communities are being developed or are in the planning phase nationwide, including several that are parent-driven.

“All of a sudden, they start seeing other families and other communities have been successful,” Kameka said. "It gives them hope and initiative that maybe they can make it a reality.”

In 2018 alone, metro Phoenix saw two housing projects open.

Former NFL quarterback Kurt Warner and his wife launched Treasure House, a residential community for young adults with cognitive and developmental disabilities. Its first resident was their son, Zack. First Place-Phoenix, a 55-unit apartment complex for adults with autism, was sparked by the founder looking for a place for her son.

The Luna Azul complex is comprised of 14 two- and three-bedroom homes with another 16 planned. Prices range from around $400,000 to more than $500,000. Anyone can move in, but there is an emphasis on inclusion of people with disabilities.

It was a labor of love for Mark Roth, an attorney-turned-developer who wanted a place where his daughter could reside.

“I toured some group homes. There are some very good ones,” Roth said. “But even the nice ones are constrained by government and charitable funds. That’s my daughter’s universe.”

Humble's family met Roth when Luna Azul was just an idea. The Humbles and Gundersons decided to seize on the September opening and buy a unit together for their sons. They liked that Luna Azul has 24/7 security and staff, a pool and a clubhouse for community activities.

When Gunderson first moved in October, his mom, Nancy, had a “couple of sleepless nights." Some people also questioned the idea.

“They couldn’t believe that we would allow him to live on his own like that, especially for Conor. He's nonverbal,” Nancy Gunderson said. “What we have found with Conor is that they are capable of so much more than we give them credit for. He just shines.”

The roommates' habilitation provider, Luisa Hall Valdez, teaches them household tasks like grocery shopping and laundry. State Medicaid funding pays for Valdez's five-hour visits, which are Monday through Thursday. She is out the door by 10 p.m. regardless of whether the guys are up or getting ready for bed.

“They’re not young children,” Valdez said. “They’re both really good at understanding where they need to be.”

Both families say they didn't want their other children to shoulder a sibling later in life. They also wanted more of a say in things like staffing and roommates than they could get at a group or foster home, said Humble's father, Will, former director of Arizona's health agency.

But what they wanted most was for their children to be integrated into a community — playing games in the clubhouse, swimming or hanging out with neighbors. Humble's mother, Julie Schmoker, said her son is now learning the opposite of what he's been told all his life: “Don't answer the door.”

That sense of togetherness is also what Jillian Copeland and her fellow parents are aiming for with their planned residential development in Rockville, Maryland. Scheduled to open in July 2020, Main Street will designate 53 of its 70 units be at affordable rental rates. Of those 53, 25 percent will be for tenants with disabilities. The remaining 17 units will be available to rent at market rate.

Copeland began researching the project five years ago when she thought about her then-14-year-old son's future, and “the fear set in.” A friend sold land to Copeland's group at a discount after they got approval for a tax credit. Planned amenities include a coffee shop, a multimedia room and a wellness center. Copeland envisions a place where people with disabilities and those without will mingle.

“It’s just not about building it. It’s about wrapping a community around people,” Copeland said. “If a kid lives independently but he plays video games all day, that’s not having a good quality of life.”

With an affordable housing shortage in most major cities, finding homes that are disability-friendly makes a narrow pool even narrower. Mark Stapp, executive director of the Master of Real Estate Development at Arizona State University, said as their children's champions, parents are willing to wade through bureaucracy and compete for federal grants and other resources.

"Somebody with a disability doesn’t have the luxury of just accepting any available unit,” Stapp said. “It's not just about a physical place. It’s about the programs that support those people’s lives.”

In 2016, there were an estimated 7.4 million people in the U.S. with intellectual or developmental disabilities, according to the Residential Information Systems Project at the University of Minnesota. Of that group, 1.2 million received long-term support and services from state agencies. About 58 percent live with a family member. Kameka, of the Autism Housing Network, noted many others are ineligible for Medicaid, including those considered too “high-functioning.”

For parents unsure if their adult children are equipped for more independent living, Kameka says to consider the regular support they need and want. How often do they require one-on-one help? Do they enjoy being in a city or a suburb? Don't force them into a living situation, she said.

The Humbles and Gundersons say some parents may be amazed by how their adult children do in a more independent setting.

"I was really surprised at how independent Conor was,” said his father, Sean Gunderson. “I just joke, ‘Want to go to our house?' 'No, I want to go to my house.’ ”