Fighting for those who ‘don’t always have a voice’

A string of individuals lined up at Centennial Hall on Thursday night, prepared to address a packed house.

One by one, the speakers shared individual stories and lit a candle to represent a theme. Most of the speakers spoke for themselves, but Damon Hampel of Wasilla spoke for his young son, Malachi, who suffers from hypoplastic left heart syndrome, meaning he only has half of a working heart.

“He’s not really great at public speaking quite yet,” Hampel joked as he began.

Hampel spoke to the Sheffield Ballroom, which was filled with those involved with the Key Coalition, an organization that advocates for community-based services for individuals with intellectual and developmental disabilities (IDD). This annual gathering, known as the Key Campaign, culminated with a demonstration on the steps of the Alaska State Capitol on Friday, marking the 30th year of the campaign.

Hampel explained how meaningful the support from those in the room and beyond was, and that he’s grateful for organizations that aid families and disabled individuals. The candle he lit was for community, he said.

“Every person has a right to live in the community of their choice,” Hampel said. “Every person can be and must be a contributing, valued member of that shared community. Children must remain with their families. Adults must be given the support to live independently in community. Community is belonging.”

Hundreds around the room nodded in agreement, some exclaiming and almost all of them clapping. They’ve spent a long time building this community, and it’s still growing.

‘Waiting for the door to be unlocked’

Mary Jane Michael, a trustee on the Alaska Mental Health trust, has been involved in numerous volunteer efforts over the years and was one of 20 people — “if that many,” she recalls — who participated in the first Key Campaign back in 1988. After budget cuts in the mid-1980s that greatly reduced grant money for community care, she and others knew they needed to do something and came to Juneau. Then the hard part began.

“We got off the plane and we really didn’t know where to start,” she recalled.

Slowly, they figured out ways to create change. Symbolically, one of the foundations for the group came when former Alaska senator Johnny Ellis kept a pickle jar at the state capitol and people from around the state would either drop off or mail keys to be placed in the jar.

The keys represented all those awaiting services, “waiting for the door to be unlocked,” Michael explained. Slowly, Ellis’ pickle jar became full of keys, serving as a reminder of those who were waiting and work that needed to be done. Keys continue to not only be the namesake of the movement, but also a primary symbol of it.

At the dinner Thursday, large paper keys covered the back wall, carrying the names of cities from Nome to Juneau that were represented in the campaign. The room was filled with some such as Michael who had been there for years and many who were there for the first time. The days of bring 20 timid campaigners to Juneau are very much in the past.

“It’s 30 years later,” Michael said, “and look at the size of this crowd tonight.”

‘Fighting for those who don’t always have their own voice’

The movement has grown not only in size but in its ability to enact change as well.

Perhaps most notably, the campaign was one of the leading forces in the mid-1990s in establishing a “no admit” policy for Harborview Developmental Center, which was Alaska’s only institution for disabled individuals at the time. This helped abolish public and private institutions, which fueled the rise of home- and community-based programs that have proven more individualized and cost-effective than institutions.

Key has also been instrumental in numerous other movements, such as convincing Legislature to enact the TEFRA Medicaid Eligibility option and reducing the length of time individuals have to wait for service.

The effectiveness of the Key Campaign over the years has drawn the attention of those in government, including Rep. Charisse Millett. She has been an admirer of the campaign for quite some time, and was in attendance Thursday night.

“These are the people we’re down here fighting for who don’t always have their own voice,” Millett said, “but these people, amazingly enough, have organized for the last 30 years and have gotten down here. They make the effort, their families are here, they understand the issues, they understand the funding, they understand how government can help them be successful. I’m just impressed by the whole organization.”

State Rep. Justin Parish, D-Juneau, was also at the dinner Thursday, talking excitedly with attendees and taking in the scene. Parish’s uncle Ed benefitted from the efforts of REACH, a local organization that provides services for those experiencing developmental delays or disabilities. Parish worked for REACH for a time as well, he said, and is “grateful” for the fact that these voices are being heard.

The dream continues

A major reason for the growth over the years was the effort of Steve Lesko, the longtime president of the organization. Lesko, who died this past May, was one of the main topics of conversation for the campaign members this week.

During a video shown in Lesko’s honor Thursday, Lesko was heard saying, “when we stop to dream, we stop to live.” That sentiment was a subtle theme of the evening, with the piano player on hand playing songs such as “The Impossible Dream” from the musical “The Man Of La Mancha,” or “I Dreamed A Dream” from “Les Miserables.”

Michael specifically brought up Hampel’s words during the candle-lighting ceremony, saying that his family is one of many that represents the future of Key Campaign and its efforts to continue the movement’s dream.

The issues today aren’t as dire as they were in the mid-1980s, but the efforts are still there as much as ever before. Michael pointed out that Medicaid reform and expansion are issues facing the community at this point, and she has no doubt the campaign will continue to be heard.

“We have our challenges,” Michael said, “but we’ve done it before. And we’ll do it again.”

 


 

• Contact reporter Alex McCarthy at 523-2271 or alex.mccarthy@juneauempire.com.

 


 

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