The first version of this story had the subtitle “Truth, Justice, and the American Way.” It was a callout to the 1950’s Superman show that I remember watching re-runs of when I was a kid in the 70’s. It was also a good story device. In a time when so much news is bad news, there’s a part of me that wants to take any small victories and trumpet them from the mountain tops, to shine a light onto better things, and to lift up heroes – whether they would call themselves that not.
Today’s story isn’t about a hero, however. At least that’s what I was told. The person I’ll introduce you to in a moment didn’t like the comparisons to Clark Kent or Superman. So, we scrapped that version of the story, and that’s OK. Because in reflecting on common decency, on goodness, on “truth, justice, and the American way,” I’m realizing we don’t necessarily want to put those things out of reach of the every day. Why should standing up for someone’s dignity, their humanity be “exceptional?” Why should it take “heroes” to see good that needs to be done and to do it?
So, this story is not about Superman anymore. It’s a simple acknowledgment of where those of us tied into the special needs community, and specifically, North Coast Community Homes, have come from, and some of the hard realities we’ve faced. How we’ve moved forward into a better, more hopeful future. There aren’t the exciting literary or journalistic turns of phrase. That’s OK. Because this story… this story speaks for itself.
I hope you enjoy it. More importantly, I hope you’re inspired by how far we’ve come and motivated by how far we can still go.
An attorney, Glenn Billington has been at the forefront of disability rights and housing longer than he’d probably like to admit. He’s been doing it longer than should be necessary. Thankfully, Billington’s been doing it long enough that sometimes he’s able to resolve an issue with a city with a simple phone call.
Putting it to print, it’s hard to believe that in 2018 civil rights for people with disabilities is still an issue. But it is.
In 1988 Congress amended the Fair Housing Act of 1968. Among the changes was the explicit prohibition of discrimination based on disability or familial status. It’s this change in the law that afforded Billington and others the leverage to champion the rights of people with developmental and other disabilities to live in a community.
Our story, however, starts earlier.
Billington was just your average New York kid in 1957 when his brother Richard was born. Everything seemed fine, but when Richard was one year old, Billington’s father wanted to talk to him about something.
“I remember my dad sitting me down. I must have been 15 or so.” Billington recalls. “Talking about my younger brother, he said to me ‘I’m sure you noticed he’s different.’”
But Billington hadn’t noticed. Richard was his baby brother, and his baby brother happened to have Down Syndrome.
“At the time, they called it ‘Mongoloid.’” says Billington.
At the time, the doctors recommended that his parents institutionalize his brother as soon as possible, and move on with their lives. It was the wisdom of the time. For people with developmental disabilities, it was a different, darker time. Yet, Billington’s parents were of the early generation of people to keep their developmentally disabled child at home.
Richard’s circumstances drew his family closer together and introduced Billington to the world of developmental disabilities. This didn’t mean that things were always easy or that they were sheltered from people who didn’t understand.
“I remember walking down the street with my brother and people calling him ‘Moon Face’.” recalls Billington. “That’s how people were then.”
As Richard got older, as is the case with many families, it became harder for his family to easily provide for all of his needs. Eventually, Richard was able to move into a six-bed community home near where he grew up. He’s still there today.
In 1973 Billington, by then an attorney with the Legal Aid Society, and his wife Anne welcomed their daughter, Sarah, into the world. She was born with multiple genetic defects and lived only 17 months. Through that experience, he came to know a variety of wonderful people from Rainbow Babies and Children’s Hospital and the then nascent Cuyahoga County Board of Developmental Disabilities (County Board). He was subsequently appointed to the County Board by the Probate Court. That introduced him to Michael Donzella. Donzella was the then Superintendent of the County Board and he was passionate about making what he saw as much needed changes for people with developmental disabilities.
“I remember Mike telling me ‘We have to provide housing.’ At the time, it was all institutions or parents – and they were getting older. Those were the choices.”
Some parents and others were starting to come together to form a few small non-profits to develop group homes; places like HELP and Welcome House. Still, a hunger for change was stirring, however. An agenda item was added to a regular Board meeting and “four hundred grey haired parents showed up.” Billington chuckles at the memory before getting serious.
“They all wanted to know what are you going to do about it to help us?”
They were parents of children who had a variety of disabilities. All of them were getting older. All of them were wondering what would happen to their child when they were gone.
This was one of the seeds that resulted in North Coast Community Homes (NCCH).
After Billington left the County Board, Donzella reached out to him to serve on the board for the nascent NCCH. Billington declined
“I was young and ambitious. I told him, ‘I’d rather be the lawyer for the organization.’” And so, in 1984 he incorporated North Coast Community Homes (NCCH) as a not-for-profit, tax exempt entity. The new organization, led at the time by CEO Steve McPeak, in coordination with the County Board then began the process of building and maintaining homes in the community for people with developmental disabilities.
By the 1980’s Billington had hoped things had changed from the days when people on the street would yell out and call his brother names. He was soon to discover that there wasn’t as much progress as he had hoped.
In the 80’s many municipalities had laws stating that no more than 3 unrelated people could live together. The law was based on how the cities defined a family. For a community home this definition would not work. To make it affordable, more than three individuals had to live together in a single home. This meant seeking special permission from cities at meetings open to the public. They often did not go well.
Billington remembers “Steve McPeake and I had to stand in front of many hostile people who were yelling that you’re destroying their neighborhood. I remember in one city we were being called Communists and Nazis in the same meeting.” In another city “they would not even let us do a pre-sale inspection,” he recalled.
Ultimately, Billington and North Coast Community Homes would have to go to court. Multiple times. Each time they had to establish that it was economically required for there to be more than three people in a home. For example, the cost of care might necessitate eight people in a group home, including the residents and their care providers.
As the Court cases began to define the rules under the Fair Housing Act, cities began to comply. NCCH was winning. Families were and those with disabilities were winning. So were the communities, because the NCCH homes were changing people’s views.
Still, the fight wasn’t over.
In the 1990’s North Coast Community Homes began moving towards the supportive living concept. That meant 4 residents in a home in a community of their choosing. The also began adapting or retrofitting homes to be suitable and accessible for their residents.
Some cities still require a public hearing. For others, there has been enough groundwork laid that when they reach a roadblock Billington can often make a call. In many cases, the Law Director then advises the municipality they have to accommodate. Several cities have even amended their ordinances to recognize that community residential care is not a threat but a value to be respected. This has made things easier and has meant NCCH can now focus on other things like installing sprinkler systems and other fire safety measures in their homes.
It’s now 2018, and while things are better, there are ways we can make them better still. NCCH is committed to doing just that, but as Billington’s story illustrates, it isn’t something we can do alone. It takes committed people who believe that history is not something that simply happens, it’s something that’s made by people. People like you.