What happens to Michael when I die? What happens if I’m in a car accident?
These are the questions Monica Meyer started asking herself years ago about her son Michael McCormick. He has autism and epilepsy. He can set up a VCR but can’t cook a meal or test water to make sure it’s not too hot.
McCormick, 35, lives on the top floor of a home that’s been converted into two apartments with separate entrances. Meyer wants to see her son grow, have experiences and learn to live a life separate from Mom.
“I’m not going to be here for the rest of his life,” she said.
Meyer’s concerns and other issues around housing were the basis of a conference on affordable housing for people with disabilities held Monday at the Heathman Lodge in Vancouver by Parents Empowered and Communities Enhanced, otherwise known as PEACE.
On the webYoutube link to Yung Ting’s tiny house: https://www.youtube.com/watch?v=mjUpb7srUfo
“Whether your child has a developmental disability or not, we’re anxious about how their lives are going to turn out and what it’s going to be like for them when we’re not around anymore,” said keynote speaker George Braddock, president of Creative Housing Solutions and an expert on designing homes for people with disabilities. “When we have a child with a disability, the conversation is more pointed. And I think it causes us to be more thoughtful and more concerned about what’s going to happen.”
Meyer was a panelist at Monday’s conference. She talked to attendees about planning far in advance for her son’s future. When he was 12, she started talking about housing with a group of people.
The process of looking for a home was eye opening in a negative way, she said in an interview with The Columbian.
“People still have huge misconceptions about people with disabilities,” Meyer said. One landlord was worried her son’s caregivers would have parties and said the deposit would be an additional $2,000. Another landlord insisted he meet McCormick beforehand to see if he was tearing apart his current house.
“I was like, ‘Are you kidding me?'” Meyer said.
McCormick’s current setup has been successful. He has six caregivers providing round-the-clock care and a companion dog, a golden doodle named Scooby who is the icebreaker in social situations. Due to his social anxiety and aggression, McCormick lives on his own.
Meyer lives just 12 minutes away and sees her son a few times each week.
The house has defined rooms that help McCormick work his way through his daily regime. One room is labeled “Michael’s room,” another “Michael’s office,” and one is Convent Street, which is actually the kitchen. (McCormick is a big fan of the musical comedy “Nunsense” and “Sister Act” and “Sister Act 2: Back in the Habit.”)
“The space just works really well for him,” said Chris Haney, one of his caregivers and program director with VanCare, a disabilities services and support organization.
A Core Waiver under the Developmental Disabilities Administration pays for his care, and Social Security Disability Income covers his rent and utilities, Meyer said. It meets his basic needs, but Mom and Dad still pay for clothing and activities. Cost is one of the ongoing hurdles families face in securing and maintaining housing. Not everyone has a setup like McCormick’s.
Mona Fuerstenau’s son still lives at home, which is the situation for most families. When her son turned 18 and she was able to get paid to take care of him, she didn’t like the idea at first. Now, she has a separate full-time job and uses a pool of care providers in her home.
“I’ve learned to let go and quite frankly have had more respite and reprieve and time for myself,” she said during a parent panel at the housing conference.
She’s been putting money in a special needs trust fund to help pay for her son’s future, including housing.
“Just dream. The sky’s the limit,” she said.
The biggest challenge in finding a place for Kay Parks’ 44-year-old son with Down syndrome was that no on believed he could live on his own.
She helped create a housing group called Teammates that was set up as a condo association, and later her son moved into his own three-bedroom home. When the opportunity arose, Parks bought the house across the street.
“No one expected he would ever live on his own,” she said. “It is incredible. He just continues to learn day in and day out.”
She remembers during the process imagining everything that could go wrong; parents often focus on obstacles, not the destination, she said.
Alex Koval, 35, got his own place through Teammates when he turned 21. He said it was fairly difficult to find a place to live, and he knows it’s not any easier for people looking for housing now.
“It’s extremely difficult for anybody to find housing,” he said.
His duplex is owned by Spokane-based Inland Empire Residential Resources Inc., which provides housing opportunities to low-income and developmentally disabled individuals in Washington.
“I enjoy my independence and make my own rules,” said Koval, who works for Clark County Developmental Disabilities. “I love my job, and I love where I live now.”
The only thing he doesn’t like is that the sidewalk doesn’t go far enough. Koval doesn’t drive and has a rare syndrome called Marinesco-Sjogren that makes walking difficult.
Jacqueline Noel’s son also relies on the bus system.
At first, Noel thought she would build her son Yung Ting a tiny house to help him learn to live independently. Yung Ting has autism and Down syndrome and isn’t particularly verbal, so they guessed at what he’d want.
“Like many parents we’re thinking we’re not going to be here forever, so where’s he going to live?” she said.
Permitting and spacing requirements for a tiny house ended up being incompatible with their east Vancouver home. So, Noel and her husband, Ted Engelbrecht, ended up building a 288-square-foot attached accessory dwelling unit. The plan was to gradually get Yung Ting used to the space — but when it was complete, he moved his stuff there, closed the curtain and locked the door. It was summer and they ate dinners on the deck, so it was a few weeks until Yung Ting actually set foot in the main house.
“We were amazed to see how ready he was,” Noel said.
The family depends heavily on technology to help Yung Ting move through his day, such as a doorbell that activates a video camera, alarms that tell him what to do for the day and self-locking doors.
It’s one of the more creative options out there for families grappling with what sort of housing to pursue and how to pay for it.
Small group shift
Several organizations at the housing conference gave their pitch on the services they provide.
Dan Lusk is vice president of business development with Bethesda, a faith-based, Medicaid-funded organization that supports people with intellectual and developmental disabilities in 13 states, including Washington.
People with developmental and intellectual disabilities tend to live in their family’s home, but he said there’s been a trend toward more independent supports where people live in their own home.
The number of people living in individual or small group settings is growing, and people are less interested in larger, group homes — a change that’s being driven by parents, Lusk said.
“That shift is changing the way providers like Bethesda are providing services,” he said.
In a relatively new service from Bethesda, called life sharing, people without disabilities open their homes to those with disabilities. In exchange, the home provider earns a professional tax-free wage. Bethesda doesn’t offer this service in Washington, but other organizations provide similar services.
Pam Blanton knows that housing is an overwhelming topic for families. She founded Woodinville-based Partners4Housing to help families with roommate matching. She developed a 126-question residential assessment to help clients maximize the services to which they’re entitled and start the work of figuring out the optimal shared living situation.
“Shared living really does give families an option to set up a home that meets the unique needs of their loved one with a disability,” Blanton said.
Leslie Smith, a mother to a son with autism, is starting a faith-driven organization called Las Casitas Foundation whose vision is to set up neighborhoods for adults with disabilities.
For Meyer and McCormick the journey to finding a housing situation that works and pencils out financially has involved trial and error. And it involves a team of helpers, including caregivers and property managers.
“To make this work it is a continual process,” Meyer said.
But the goal remains the same: “I just want him to be able to live in the community successfully.”