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How Long Can We Avoid Long-Term Care?

At a conference in Sacramento last week, advocates kept calling it a crisis in care in California — and at the same time acknowledging that citizens’ and policymakers’ eyes seem to glaze over whenever the subject of long-term care comes up.

Given the huge swell of about-to-be-seniors who will need care in California, it’s certainly an important subject. One of the touchstones of the conference was that the long-term care world needs a new, less scary way of framing the issue — it needs to develop a new language.

Because it can be so difficult to engage Californians on the subject, the legislative infrastructure has not yet been fully set up. According to Diana Dooley, secretary of the Health and Human Services Agency, there is a lot of room right now for input on the subject.

“There is not a grand plan on the books,” Dooley said. “We are very open to ideas and suggestions.”

Cost-cutting and budget reductions in health care are hopefully near an end, she said, and that could mean there’s a big opportunity now to help form a wider, more comprehensive plan around this issue.

“So I didn’t come here with a grand plan, but I do want it to be different from how it has felt this year,” Dooley said. “Sometimes it’s felt a little like Pickett’s Charge this year.”

But this is a winnable battle now, Dooley said. “I can tell you, we will provide services to the people who need it,” she said.

To do that effectively, according to Bruce Chernof, president and CEO of The SCAN Foundation, which sponsored the long-term care summit, you need to begin at the beginning.

“We have to come up with a better language set,” Chernof said. “Long-term care means nursing home to most people, and that’s not what we’re talking about.”

Even when policymakers want to do something about long-term care, he said, they’re often stymied by not being able to discuss it in ways people can relate to it.

“We have to help elected officials have simpler, clearer, people-centered language that they can use,” Chernof said.

Gretchen Alkema of The SCAN Foundation said that changing policy in Sacramento starts with framing those proposals as being within reach, able to be accomplished.

“To politicians,” Alkema said, “when we say long-term care, well, long-term sounds expensive, and difficult to solve.”

That same dynamic applies to most Californians, Chernof said. “We have to correct public misconceptions about long-term care,” he said. “Most people think, well, I’m not going to need this. And that’s not true, that’s inaccurate.”

The irony, Alkema said, is that people’s willful ignorance is over a subject with which everyone will eventually have to grapple. “To most people, it can sound too long, too expensive and too difficult to tackle,” Alkema said, “but more and more of these issues are hitting home in people’s own living rooms.”

Chernof said the concepts of dignity, choice and independence all resonate with lawmakers, and with Californians.”Don’t go to the usual line,” he said. “The phrase ‘long-term services and support,’ it may be better than ‘long-term care,’ but really, the goal is to come up with a better language set. Really, it’s about dignity and choice and independence. That’s what long-term care is.”

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