L-R: Kathleen Sebelius, Barack Obama, and Nancy-Ann DeParle at the White House on Monday, Mar. 2

On March 2, President Obama announced his picks for Secretary of Health and Human Services (HHS) and the National White House Office for Health Reform.  Kathleen Sebelius, the governor of Kansas and an early Obama supporter, will lead HHS if confirmed by the Senate, while Nancy-Ann DeParle will head White House health reform efforts.

Both candidates bring considerable health policy experience to their new positions. Before being twice elected the Democratic governor of Kansas, Sebelius, 60, served as the state’s insurance commissioner for eight years. The Associated Press said (Mar. 2) she “is seen as a steady hand and an experienced public official who knows how to work across political lines” but also said she “represents Obama’s backup plan and will have to establish a working relationship with many key players.” This is in contrast to Tom Daschle, Obama’s first nominee.

DeParle, 52, is a former Tennessee state health commissioner. During the Clinton presidency she worked in the Office of Management and Budget and then for three years as head of the Health Care Financing Administration (since renamed the Centers for Medicare and Medicaid Services), overseeing the Medicare and Medicaid programs. The New York Times (“Obama Taps Health Aide With Links to Industry,” Mar. 2) described DeParle as “someone with deep roots in the Washington bureaucracy, an intimate familiarity with health policy and respect on both sides of the political aisle — not to mention degrees from Harvard Law School and Oxford University.”

Sebelius’ and DeParle’s skill and experience will immediately be put to the test as they tackle one of the most daunting challenges of the new presidential administration. “Together,” said The Washington Post (Mar. 2), they “will be charged with helping to craft and sell the administration’s ambitious effort to revamp the nation’s health care system to both extend access and rein in runaway costs.”

The particular difficulties of timing, as both women prepare to assume their new positions in the midst of a deepening financial and economic crisis, were stressed by the AP in words that also highlighted the significance of these developments for older Americans and people with disabilities:

If confirmed, Sebelius will assume her new role as the recession has taken its toll on Medicare, which provides health care for older people and the disabled. Plunging tax revenues have weakened the program’s giant hospital fund, accelerating its projected insolvency to as early as 2016. That is only about five years after the first baby boomers will start signing up for services.

There is no doubt that health care reform tops the Obama administration’s domestic agenda. On March 5, the President convened a summit of more than 120 health care experts at the White House to discuss health care reform (“Obama welcomes allies, skeptics to health summit,” AP, March 5). Calling health care costs the greatest threat to the US economy, Obama made it clear that the time for change is now:

“In this effort, every voice has to be heard. Every idea must be considered. . . . There should be no sacred cows. . . . The status quo is the one option that is not on the table.”

Commenting on the administration’s plans for reform, PHI National Policy Director Steve Edelstein said, “PHI will be working with other eldercare and disability advocates to ensure that national healthcare reform addresses long-term services and supports. That will require a workforce policy that increases the quality of direct-care jobs, through improvements in wages, benefits and training, in order to ensure the availability of those services.”

Steve Shields

Steve Shields’ journey from heading up a long-shore drilling operation in the Middle East to becoming a key player in the eldercare culture change movement began with the loss of his mother.

In the mid-80s, his mother had advanced Alzheimer’s and his father had Parkinson’s, two “headline diseases,” as he calls them. So, Shields went home to Kansas to help.

“The options available to them were dismal,” he remembers.

Shields saw his mother, a former dancer, deteriorate in a nursing home. He blamed the facility’s strict schedules and clinical feeling for her rapid decline.

One day she pirouetted down the hallway. A janitor knocked her down and injured her. The nursing home staff told Shields that his mother should not have been dancing in the first place. Shields gave some thought to it and then decided that his mother, and for that matter all of the other residents in the nursing home, should be dancing.

He transferred his mother to what was considered a better option, Meadlowlark Hills, a nursing home in Manhattan, Kansas, and took a job there. When she later died, he vowed to change the way nursing homes operate.

Since 1994, Shields has been CEO of Meadowlark Hills. In 2000, Shields and other Meadowlark personnel began conducting extensive research, gathering detailed input from residents, staff, architects and industry professionals on what would make Meadowlark Hills a better place to live. They transformed the 24-hour care center from its traditional institutional model into a new model based around homes where people live and thrive.

Complete transformation

Meadowlark Hills was a culture change pioneer. Advocates for culture change a decade ago were viewed as outsiders. But today the idea of smaller households with a consistent staff is firmly established as an alternative to traditional nursing homes.

Because of groups like Pioneer Network, the Green House project, PHI, and Meadowlark Hills, says Shields, the movement has become mainstream. These efforts have helped the household model grow from fewer than 30 small houses in America ten years ago to more than 800 today.

“It doesn’t need to have a brand name,” says Shields. “The vocabulary fits the local culture. In the long run, it’s been better for people to grapple with this and let it reflect local culture and local organizations. If there were 800 with a name like McDonald’s, the understanding of policymakers would be deeper and higher, but nonetheless, there are 800 where there was once none. “

At Meadowlark the use of clinical call lights, massive nursing stations, and metal meal carts was discontinued. Residents were given back their right to direct their own schedules and lives. The nursing home physical plant was redesigned to create the feeling of a true home. Since then, Meadowlark, with Shields at its helm, has become an international model of transformation in retirement communities.

“The rate of change is not going to slow,” says Shields, who speaks on the subject of culture change around the world. “It’s going to exponentially increase. We are now past the time when facilities are waiting to see if it’s a good move for them. Now is the time to actively plan for transformation or you’re not going to be here. By 2015, you’re gone.”

Meadowlark Hills is now a learning site for other organizations across the country, and Shields is an international consultant. Every week during the past decade, they have had visitors from around the globe “who want to begin their own journey,” he says.

Moving ahead

Shields’ staff recognized in the early ’90s that if others failed to move in the same direction, they wouldn’t sustain their own transformation.

“It takes constant vigilance to preserve and maintain and grow,” he says.

In addition to teaching other organizations how to make the changes, they have “penetrated” their area’s education system to ensure that their own area colleges and universities teach culture change.

“If we don’t, they are already tainted,” says Shields.

For instance, at Kansas State University, Meadowlark Hills has concurrently coordinated 20 different internships in various departments, including nursing, human resources, architecture, and landscape architecture, so that students in each area understand how their piece connects with the whole.

Shields says that smart decisions and further advancements in culture change can only help positively reform the health care system overall.

“I believe,” he says, “that elder services can really drive cost down in America. I think we can significantly drive down costs for the Medicare system,” by changing the focus from acute care to prevention and chronic disease management for eldercare and disability services.

He notes his excitement about the Obama administration’s recent nomination of  Kansas Governor Kathleen Sebelius as Secretary of Health and Human Services. “She’s a very competent individual,” he says. “Most importantly, she’s a very grounded, yet a practical visionary leader. I think she’s going to bring a great deal to the table at this critical time, at what appears to be the first allowable departure from the status quo not only in health insurance but in how we view health. I’m thrilled about it. . . . Whether she’s first or second pick, she’s the person for the job.”

As for his recommendations for future policy developments, Shields says policymakers should focus on reducing the number of nursing facilities and transforming those that remain into the household model. “Not only because it’s the only fiscally responsible way to deal with the problem,” he says, “but it’s also a wonderful solution that allows people their fundamental rights of driving their own lives despite the fact that they have 24-hour needs. They eat when they want and they sleep when they want and they make their own decisions.”

- Story by Dinah Cardin

These residents and their supporters have mounted a campaign, complete with a website, to increase their visibility in the eyes of state residents and lawmakers. Their primary goal, as stated in the AP story, is to “reduce the waiting lists [of those waiting for care] and increase the salaries” of the direct-care workers who care for them.

A Budget in Crisis

Kansas’ budget crisis has been widely talked about in the national news media in recent weeks. As the Star reported (“Kansas budget battle a lengthy journey, a twisted pathway“) on Feb. 21 in colorful language, the state “joined California as the poster child for budgetary bedlam [in mid-Feb.] as Democratic Gov. Kathleen Sebelius and Republican legislative leaders wrangled over the state’s fiscal crisis.” The problem actually began months ago and then simmered until it finally “boiled over. . . when paychecks to state workers, tax refunds and other state obligations got caught in the middle.”

A potentially devastating crisis was averted when the state’s Republican lawmakers agreed to cover tax refunds and state paychecks by borrowing $225 million from various state accounts, while in return Gov. Sebelius agreed to approve about $300 million in budget cuts for the 2009 fiscal year.

Invisible Residents

But this may not be enough for the state’s “invisible” residents, those developmentally disabled individuals who fear they may be overlooked in the budget furor.  In the words of advocates and family members, these individuals “wait for services they need to live more productive lives [and] are often forgotten during battles over the state budget.” They include “children who need special therapies, mentally disabled older adults who can no longer live in their homes and parents of disabled children who simply need a few hours out of the house.”

These Kansans and their supporters are now employing not only traditional media such as television, newspapers and billboards but also social media websites such as Facebook, MySpace and YouTube to publicize the plight of both the disabled and their caregivers. They are also hopeful that a bill making its way through the state Legislature — HB 2094, known as “The Invisible Kansans Bill” — will deliver positive results.

The Star story describes the situations of three of these caregivers — including a married couple who in addition to working professionally in the field have a developmentally disabled 5-year-old son of their own — and then concludes by quoting state Rep. Jason Watkins (R-Wichita), who says, “We have to go back to the fundamental philosophy of what our government’s priorities should be. We might have to make a choice to drop an economic development area, or maybe even a wildlife and parks area, before we cut money for the physically or developmentally disabled. . . . We would argue the No. 1 priority for government is to take care of the vulnerable.”