Fragmented Long-Term Care System Needs Help, Report Says

California’s system of long-term care is fragmented, difficult to navigate for both patients and health care providers, expensive, outdated and in need of a makeover, according to a new report from the SCAN Foundation.

The brief – “Transforming California’s System of Care for Older Adults and People With Disabilities: A Look at the State’s Administrative and Fiscal Organization” – contends that the state’s current system “was created one program at a time, resulting in a highly fragmented arrangement of services that focuses little on the individual’s holistic needs but instead on the particulars of what each department or program provides and from where funding originates.”

The report makes recommendations that focus on getting government agencies at all levels — federal, state and county — to work together with common processes and goals to create “a more efficient, person-centered system of care.”

‘Good National Models Out There’

Although the report deals specifically with California, Bruce Chernof, president and CEO of the SCAN Foundation, said several promising national efforts could help California reshape its long-term care system.

“There are good national models out there,” Chernof said. “We’re not just dreaming of a better world some day. There are things happening and groups forming right now that present real opportunities for change and growth.”

Chernof pointed to three places that show promise — two new federal agencies and a private coalition. The new government agencies, born as part of health care reform — the Center for Medicare & Medicaid Innovation and the Medicare-Medicaid Coordination Office — are both part of CMS.

The new government agencies and some private groups share the SCAN Foundation’s goals of creating patient-centered long-term care services and support, according to Chernof.

The private group he singled out — the Coalition to Transform Advanced Care — is based in Washington, D.C., and co-directed by Bill Novelli of the McDonough School of Business at Georgetown University, Tom Koutsoumpas of the Mintz Levin Center for Health Law & Policy, and Myra Christopher of the Center for Practical Bioethics. It is funded in part by grants, including a grant from the SCAN Foundation.

Race Between Boomers and System

Our culture, probably since the beginning of the European takeover of North America, has valued youth, energy and a proactive “get-it-done” approach to life. As a culture, we don’t pay much attention or homage to natural, inevitable evolutions, including our own aging.

That cultural bias may change over the coming decades as the huge baby boomer generation ages and fundamental changes take place in our health care system. You could look at it as a sort of race: Which will arrive first at the realization that change is needed to deal with an aging population — the health care system or the baby boomers?

Chernof predicted the boomers will get there first.

“The boomers as a group are likely to re-imagine how we think about aging, and I think that change in perspective will likely play a major role in how the system responds,” Chernof said.

“The system is not going to change on its own,” Chernof said. “We’re going to have to demand it.”

The arrival of health care reform should help make change possible, according to Chernof, but the kinds of fundamental shifts he and his foundation are talking about could take years of coordinated planning and follow-through.

“We at the SCAN Foundation think it should be happening now,” Chernof said.

Changing the Language

One of the first places to consider change, Chernof said, is in the language we use to talk about aging.

“There’s a major disconnect between the language of health care and delivery system and the way people actually think of themselves. I think if we want people to engage in this issue, we’re going to need to talk about things the way people actually live their lives, not the way the health system sees them.

“We really are on a mission to start a national discussion that changes the language, that changes the focus to people rather than patients,” Chernof said.

In an essay titled “Changing the Conversation: How Americans Talk, Think and Feel About Aging,” Chernof makes a case for a new perspective:

“In my 25 years as a physician, I’ve never heard anyone describe themselves as a ‘functionally impaired patient with chronic multiple conditions,’ a ‘long-term care recipient’ or a ‘dual eligible.’ Yet these types of terms are used every day among health care professionals, policy wonks and advocates to describe the very people on whose behalf we work.”

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