For two decades, the couple fought side by side for disability rights

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Published: 08/07/2022 18:04:20

Modified: 07/08/2022 18:01:03

Sarah Koutroubas’ son was just a toddler when he was first denied the resources he needed for his disability.

Her son was diagnosed with Beckwith-Wiedemann syndrome, a rare genetic condition that required intensive speech therapy, occupational therapy and physical therapy. Community Bridges, a non-profit organization in Concord serving people with disabilities, told her they could only see her son once a week.

Sarah, who was then working as a hairdresser, decided to wait in the lobby of the association until they agreed to provide the care advised by medical professionals.

“See my child when you say you can’t provide that care,” she said. “To tell about him that he can’t walk until he’s much older because I can’t give him what he needs.

After several days of Sarah and her baby crying in the hall, the association relented. Impressed by her tenacity, Community Bridges also offered her a part-time job in 2005.

Over the next few years, Sarah encountered several other injustices, such as when her son was diagnosed with cancer and could not find a health insurance company because of his genetic syndrome. But at Community Bridges, she could work full time to change systemic problems in the system.

This is how she first met her husband, Alex Koutroubas, a Dennehy & Bouley lobbyist who was already involved in disability rights issues.

Since then, they are each part of an advocacy power couple. Alex uses his deep understanding of the Statehouse to strategize on the best ways to get the legislation passed.

Sarah expertly explains complicated topics and rallies the community to champion issues important to them.

For more than two decades, they have used this dynamic to bring meaningful change to the lives of disabled Granite Staters.

In 2007, the couple worked tirelessly on a bill that would help eliminate the waiting list for developmental services.

Alex helped draft the bill and guided it through the House and Senate. Sarah organized community groups to testify at the hearings.

Despite heavy financial demand, the bill passed into law and has virtually eliminated the waiting list since 2011.

At the height of the pandemic, Sarah used her connections in the governor’s office to help start a stipend program for long-term care workers.

Part of his motivation came from his own staff’s experience during the pandemic. Sarah recalled staff moving in with their clients who tested positive for COVID-19, even though it meant spending Christmas away from their own families.

“These people don’t make a lot of money,” she says. “When you make $15 an hour and are willing to devote at least two full weeks of your time to a major holiday: that’s why I advocate. There is so much compassion.

Sarah’s son is now twenty years old and graduated from Lakes Region Community College with an electrical degree.

Sarah is convinced that if her son had been born today in New Hampshire, he would have had an easier time accessing the resources he needed, thanks in part to the couple’s advocacy work.

That’s what keeps them going, she says.

“It’s just that it’s incredibly difficult and lonely to be a parent of a child with a disability,” she said. “It’s scary and I don’t want other people to feel that unnecessarily. For me, there is always something we can do to improve the lives of the people we serve.

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