One of the new laws approved in the Oregon legislative session this year gives people with a family member in memory care the right to establish independent councils to advocate for their loved ones.
It’s not that often that a couple of ordinary Oregonians who don’t work in government are successful in getting a law passed in Salem. But two Eugene area residents were the forces behind the legislation.
Jewel Nelson and Judith Smith met in 2019 when each of their mothers moved into memory care at the Rawlins in Springfield.
Soon after, COVID hit. Nelson told KLCC she learned you don’t know what you don’t know.
“One thing we do know is that the residents themselves because of suffering from these diseases have no voice of their own, no ability to advocate for themselves,” she said. “Everybody all over the country was struggling and in these facilities everything was all in a panic and there was a real nightmare going on with staffing with visits to the windows with lack of information and accessibility to our loved ones.”
An independent family council
The Rawlins started offering town halls on Zoom for loved ones and family. But Nelson said she and Smith wanted something else. With help from the local ombudsman, they started to meet on a regular basis without Rawlins staff.
“But it became an invaluable touchstone for providing support, community education and advocacy for each other, all the family members, and friends who attended these council meetings,” she said.
They brought in special guests including experts on topics including hospice, Medicaid, Alzheimer's, and more.
Judith Smith said through the family council, she found a community. Management was only able to attend by invitation, so it gave space to speak freely.
“If the facility, for example, had a systemic issue, we could bring that forward to them,” she said. “Some people are afraid to talk about these things because they might be singled out. And maybe they're not heard so we as a family council could write a letter or stand behind someone and with the ombuds or deputy ombudsman facilitating the meetings, she has all the answers.”
A rude surprise
Then, in 2023, both their moms died within a few months of each other. Then the Rawlins got a new manager who told them the family council was no longer meeting and they would start a management-run support group. Smith called this a rude surprise.
“I thought that we had rights,” she said. “I thought independent family councils have rights because there’s a publication called ‘The Consumer Voice’ that addresses that. But then we found out that that’s a federal law for nursing homes. And I said, ‘why isn’t here a law in Oregon to protect family councils?’”
Nelson said she was invited by a family member to the management-run support group Zoom meeting. But she was not allowed into the Zoom. After that, they reached out to the state ombudsman, Fred Steele, and told him what happened. He offered his support for legislation to protect independent family councils. Nelson said that was a big relief.
“It was a perfect wedding of shared concerns and a boost to accidental activism on our parts,” she said. “Because as you said, it’s not our background, we’re not lobbyists. So we started down this path.”
A bill in the 2025 Oregon legislature
They did some digging and found out that California has a law protecting family councils. They put together some language for a proposed legislative bill.
They met with Sen. James Manning of Eugene, who agreed to carry the bill. They spent many days visiting with lawmakers in Salem to present their story. The process was intimidating.
Nelson said many legislators were surprised that independent family councils weren’t already protected by Oregon law.
“Because what we found was, if there wasn’t a law, the choice of whether to allow an independent family council in a facility was totally up to the whim of management,” said Nelson.
Then, after hearings and all the processes that it takes for a bill to move forward, Senate Bill 228 was approved by the Oregon House and Senate. No one voted against the bill in either chamber. Gov. Tina Kotek signed it into law on May 28.
Looking ahead
Smith said she wanted this for every family in Oregon who has a loved one in memory care.
“Having that sense of community, it really means a lot,” she said. “And I think through family councils that their loved ones' voices can be heard. And I said, this is not for my mother because she’s not here anymore. But it’s in memory of my mother.”
Nelson said it is fitting that photos of each of their mothers are on the "one-pager" explainer sheet they handed out to lawmakers during the session.
“These were the women who were a catalyst for who we’re protecting and who we’re advocating for who have lost their ability to speak for themselves,” she said. “So that’s why it’s so important.”
Nelson and Smith are now prepared to spread the word about family councils to people who have loved ones in memory care. If anyone is seeking to form a family council, they can contact the state ombudsman for long term care.
