Lived Experience Helps Kirsten Elliott to Better Support the Disability Community
CHN’s Vice President and Chief Operating Officer gives her talents to a movement that made an impact on her family.
It dawned on Kirsten Elliott while taking a Women’s Studies class at Wayne State University in 1997 that her son, Max, will never fully be a part of society.
“We were talking about inequities and discrimination, and it hit me in such a visceral way, in my chest,” she said about her realization that day, more than 25 years ago, when her son with Spastic Quadriplegia Cerebral Palsy was four years old.
That true full accessibility remains elusive despite the Americans with Disabilities Act (ADA) signed into law on July 26, 1990.
The ADA has significantly improved the lives of many individuals with disabilities, but it has only set the minimum standard for what is necessary to ensure equal access for everyone in various areas of public life.
Kirsten points to the inaccessibility that still exists in housing, transportation, employment, education, healthcare, and even the criminal justice system. More so for non-white people with disabilities and for those whose socioeconomic position makes access to these systems challenging.
“Where are the curb cutouts? Can we go there? Can we do this? Can we do that? We always need to pre-think and plan for how long it might take to load and unload the vehicle, and what barriers may exist when we get there,” she said.
Although Kirsten is not a person who lives with a physical disability, she said, “I am very keenly aware of” places in the world that are accessible (or not) to her son, who uses a wheelchair.
The ADA requires that public buildings and facilities be accessible to people with disabilities, but often the accessibility entrances, for instance, are in the rear of the building.
“You’ve got to go through the alley to find the loading dock elevator to get to the second floor,” she said.
What happens if the elevator isn’t working? It means they might have to go home or skip attending a planned event.
Like many other people with disabilities, it’s these basic design limitations that Kirsten and her son often confront in public buildings, among other spaces.
“He never could go on the bus for a field trip with all the other kids,” she added. “He always had to either be driven separately or he had to go on a different bus with a wheelchair lift while the other kids were on the other bus. There is always this exclusion.”
Max is 30 years old now. Carrying him up and down a flight and a half of the stairs like Kirsten used to when Max was a child is no longer an option.
That’s not to say this was acceptable back then either, but Kirsten had no choice while living in poverty. The only shelter she could afford where her support system existed was in an upper flat in an old building in Downtown Rochester.
“We had no stove, no refrigerator. What was probably lead paint was flaking off the plaster walls and I’m sure the tile had asbestos in it,” she said.
“It was hard, but we made it work while I waited on the subsidized housing list for four years and because of that subsidized housing, I could finally move into something clean and decent. It still wasn’t fully accessible, but it was more manageable while taking classes, working full-time, and supporting Max.”
Working Towards Full Inclusion
As we celebrate the 33rd anniversary of the ADA this month, Kirsten reflects upon her lived experience and how it has shaped her work at the Community Housing Network.
When Kirsten started at CHN in 2001 she viewed it as an opportunity to improve Max’s future.
“I thought, this is amazing. I can make a difference for people like Max who have struggled under similar circumstances,” she said. “My motivation for my work came from knowing that my son will never have room at the table unless someone helps him get to the table.”
The first step was making sure that people with disabilities have equitable access to the resources they need. Kirsten did this by creating the Housing Resource Center, a “one-stop-shop” for all community members to connect with programs and resources that can address their housing needs.
Through the HRC, Kirsten was able to help individuals and their families navigate the complex affordable housing system. She would teach them to advocate for what they needed. Kirsten became a Certified Housing Counselor to help guide first time homeowners and to help renters protect their rights.
She dedicated much of her time to outreach within the mental health system working with case managers and individuals with children who have disabilities. She visited places like Easterseals and MORC (Macomb-Oakland Regional Center) to provide training on the Section 8 (now Housing Choice Voucher) program.
Within six to nine months at CHN, Kirsten was able to create the first subsidized housing list. She tracked intakes and developed statistics on paper while answering 80-100 calls per month.
“It was very apparent very quickly that there wasn’t enough affordable housing for the amount of people that needed it,” she said.
After a few years and with the information Kirsten had gathered, CHN was able to grow and expand its services with continued funding support from its partner, Oakland Community Health Network (OCHN).
Kirsten also wrote grants to diversify CHN’s revenue streams, which helped launch the organization’s Permanent Supportive Housing program. This program has become the largest provider of permanent supportive housing in Oakland and Macomb counties for people who are experiencing homelessness with built-in care and support for people with disabilities.
Kirsten became a Certified Occupancy Specialist to help determine who is eligible for affordable housing and to help eligible participants navigate the application process.
Today, CHN employs around 100 trained housing specialists working to meet the needs of people with disabilities, low- to moderate-income families, veterans, the homeless community, and older persons.
Kirsten’s career path has evolved at CHN in the last 20 years. As she grew into her role as Vice President and Chief Operating Officer, she raised awareness about accessibility deficiencies, not just for people with physical disabilities, but for people with invisible disabilities, too.
“I am determined to make resources more available in the community and to teach people how to access the housing they need so when I’m gone, I know my son is going to be OK. I want to ensure that Max, or any person living with a disability, has the option to choose whether or not they want to live in a group home or to live independently,” she said.
Kirsten added that not only was she able to purchase her own home in 2003, but Max also lives on his own in his deceased father’s old house just down the street from her. They invested quite a bit of money transforming their spaces which are more functional with zero-entry access.
Many people with disabilities don’t often have the choice to live life the way they want and still access the support they need. Kirsten is committed to fostering choice and self-determination for everyone.
Her expertise has led to better decision making at CHN, the creation of programs that improve the well-being of people with disabilities, and the building of houses and developments that are more accessible for program participants so they can live their life as fully included as possible.
“I am always thinking about the changes that need to be made and our role and how we can help people with all different types of needs while building and developing as many fully accessible houses and apartments as we can,” said Kirsten.
It’s because of the ADA that Kirsten’s work to remove barriers for the disability community is possible. The protections made available by, and the requirements of the ADA afforded Max the opportunity to graduate from high school and earn his bachelor’s degree. He was recently accepted into the library and information science program from Kirsten’s alma mater, WSU, where he will pursue his master’s degree.
“But he is always going to need support,” said Kirsten. “There is a lot more work to do.”
When asked what members of the community can do to help with efforts being made to support children and adults living with disabilities, Kirsten said that busting the stigma is critical to fighting inaccurate and hurtful representations of disability that prevent progress from being made.
In addition, she said everyone, including people within the disability hierarchy, needs to own up to their ableism and look inward to address their prejudices towards people with disabilities or types of disabilities different from their own.
As far as CHN is concerned, Kirsten said the organization is committed to working with its community partners to drive systems change by addressing chronic, complex problems at the community level.
“We must meet the needs of the community. I have not accepted telling somebody on the phone that there’s nothing we can do for you right now. Sometimes we still do, and it breaks my heart,” she said. “Beyond providing services for people who are literally homeless, we want to do more to prevent people from becoming homeless. This means more education, more outreach, more working with the courts and with the landlords and using technology to make information more quickly accessible and transparent for the entire community.”
CHN has helped so many people in the last 20 years, but one of the accomplishments Kirsten is most proud of is giving people access to information that helps them make the right choices in life for themselves.
Kirsten said, “It’s not just about providing homes for people in need. We’re empowering them too.”