NCCNHR is now The National Consumer Voice for Quality Long-Term Care — a modification of its tagline — or the “Consumer Voice” for short.

The Consumer Voice has broadened its federal advocacy efforts to include addressing policy issues regarding at-home care and assisted living. The organization has been a force for improving the standard of care in nursing homes since its inception in 1975 as the National Citizens’ Coalition for Nursing Home Reform.

Among the ways that the Consumer Voice says it will carry out its revised mission — to represent the consumer voice at the national level as an advocate for quality long-term care, services, and supports — is to “promote the critical role of direct-care workers and best practices in quality-care delivery.”

The Critical Role of the Direct-Care Workforce

Recognizing the value of direct-care workers to the care team and how these workers impact quality of care is not new to the organization.

“No matter what laws and regulations are in place, no matter who or where the care is provided — the experience of the consumer is determined by his or her interactions with the direct-care worker,” said Consumer Voice Executive Director Sarah F. Wells.

“I am confident that consumers and workers partnering together can advance quality in all care settings,” she continued. “This is an exciting time for The National Consumer Voice for Quality Long-Term Care and the people we represent.”

New Policy Agenda

The organization’s new policy agenda includes:

• the reauthorization of the Older Americans Act;
• implementation of long-term care provisions in the health care reform law, including nursing-home transparency, elder justice, and criminal background checks on workers;
• development of policy on non-nursing-home settings, including assisted living;
• promoting a high-quality and effective long-term care workforce;
• strengthening oversight and enforcement; and
• promoting long-term care quality initiatives.

The Consumer Voice’s expansion of priorities was the outcome of a seven-month strategic planning process (pdf) that was funded by The Atlantic Philanthropies and announced on June 14. The process brought together consumers, members, past and current leaders, donors, grant makers, long-term care experts, staff, and other stakeholders.

– by Deane Beebe

Members of the CHCA Policy Action Group (PAG)

Members of the Cooperative Home Care Associates‘ Policy Action Group (PAG) met with New York state legislators in Albany on February 23 and 24 to discuss the unfair treatment of home health aides.

Cooperative Home Care Associates (CHCA), an affiliate of PHI, is the largest worker-owned home care company in the country. Its PAG consists of a group of approximately 30 home health aides who advocate for better wages and benefits while learning about issues important to their work and developing themselves as leaders.

“This offers a great and unique opportunity for home health aides to have their voices heard and to participate in the legislative process,” said Michael Elsas, president of CHCA. “We pride ourselves on being the only home care provider in the state with a Policy Action Group that offers a forum for workers to advocate on behalf of themselves.”

PAG’s Message to State Legislators

The main message of the PAG was to ensure that home care workers would not have to bear the brunt of state budget cuts. In fact, the advocates asked the legislators to consider directing more money towards the workers. Currently, Medicaid pays certified agencies in New York an average of $18 for an hour of home health aide services, yet the average starting wage for a home health aide is $8 an hour.

The PAG members also asked their representatives to improve contracting standards and state workforce data collection. More specifically, they want to make certain that Medicaid favors those agencies that can demonstrate the majority of the rate goes to worker compensation.

These issues are currently being evaluated as part of the New York Department of Health’s Home Health Care Reimbursement Work Group (pdf), which assesses how home care providers and workers are paid.

PAG members encouraged the legislators to pay close attention to the recommendations of this work group — which will continue to meet throughout 2010 — in order to ensure more transparency and accountability in the system.

Many Policymakers Involved

The PAG members met with Assemblyman James Brennan and State Senator Ruben Diaz Sr. They also met with staff for Assemblyman Richard Gottfried, chair of the Health Committee, and State Senators Ruth Hassel-Thompson, Eric Schneiderman, Tom Duane, and Jeff Klein.

In addition to visits with their legislators, PAG members were introduced to the entire New York State Assembly by Assemblywoman Carmen Arroyo, the state representative for CHCA’s district.

– by Meghan Shineman

Founded last year, the coalition gives family caregivers as well as professional direct-care workers the opportunity to speak out on various workforce issues in a unified voice.

The coalition is expanding. It was recently recognized by the federal government as a 501(c)(6), and is now seeking an executive director (pdf).

The Coalition’s Mission

“Family and professional caregivers have built this grassroots movement,” said Adrienne R. Smith, president of Education and Workforce Consultants in New Mexico and the person responsible for organizational start-up of the Coalition. “Organizational infrastructure is in place, with goals and activities developed around what direct-care workers have told us they want and need.”

On its website, the NMDCC states that its overarching goal is to improve direct-care workers’ quality of life. The NMDCC works to achieve that goal by:

• Working with state lawmakers and government officials to develop better health benefits for New Mexico’s direct-care workforce
• Posting job openings and and professional training opportunities on its website
• Giving workers a platform from which they can advocate for various job improvements, such as higher wages
• Granting direct-care workers the opportunity to “enhance and promote [their] professionalism and image”

New Mexico’s direct-care workforce totaled 24,700 in 2006, the last year for which data are available.

Applications for Executive Director

The executive director will be responsible for encouraging the further growth of the NMDCC. The ED reports to the NMDCC’s 10-member board of directors, all of whom are direct-care workers.

Applicants are asked to send a cover letter and resume to nmexchange@aol.com by March 3.

– by Matthew Ozga

(L-R) Ancil Alexander from Cooperative Home Care Associates; Joe Angelelli, Meghan Shineman, and Steven L. Dawson from PHI; and John Hale from the Iowa Caregivers Association

Dozens of eldercare workforce advocates and constituents went to Capitol Hill on September 15 to let Congress know that a strong eldercare workforce is essential to real health reform.

The Eldercare Workforce Alliance (EWA), co-chaired by Steven L. Dawson, PHI president, and Nancy Lundebjerg, vice president and chief operating officer of the American Geriatrics Society, organized the National Advocacy Day. EWA, a broad-based coalition of 29 national organizations representing all aspects of the health care delivery system, supports practical solutions to improve health care quality for older adults by strengthening the eldercare workforce.

EWA, with representatives of PHI and affiliates from five states, took to the Hill to express its dismay about inadequate federal efforts to develop and maintain a workforce that is competent to care for our nation’s growing aging population. Ancil Alexander, a direct-care worker from Cooperative Home Care Associates in New York, offered a personal perspective on the critical role direct-care workers play in the health care system. The group reinforced its message with a full-page ad in Roll Call, a publication targeted to Capitol Hill.

“Once we educated Congress members and staff about direct-care workers’ vital role in providing quality care, as well as the problems attracting and retaining staff due to poor benefits, wages, and training, they understood the urgency of the issue immediately,” Dawson said.

“Right now Congress is focused on health reform issues around providing coverage and who will pay. When Congress is ready to turn its attention to who provides care, EWA’s groundwork will help to move the issue onto their radar screen,” he added.

EWA is urging the legislators to retain and include provisions that focus on developing and maintaining the eldercare workforce in the final health reform bill. EWA is specifically calling on Congress (pdf) to retain provisions in the Senate HELP Committee’s Affordable Choices Act and the House Tri-Committee’s America’s Affordable Choices Act of 2009, and to enact health reform legislation that:

• Supports health professionals
• Supports the direct-care workforce
• Supports older adults remaining in their homes
• Supports personal care attendants

The EWA is further urging Congress to add provisions that would:

• Provide loan forgiveness for professional training in geriatrics and gerontological specialties
• Increase the federal match for all home and community-based services funded under Medicaid

Dr. William Thomas

Bill Thomas calls himself “a nursing home abolitionist.”

“I want them to go away,” he says. “Our greatest adversary is the institutional mindset. That must go.”

Talk of culture change doesn’t matter as long as people retain an attitude of elders as “the helpless inmates of total institutions,” he says.

Looking back on the last decade of the culture change movement, Dr. William “Bill” Thomas, an international authority on geriatric medicine and eldercare, says it has progressed from the point of “being laughed at” to the subject of serious criticism.

An increasing number of organizations, regulatory bodies, corporations, non-profits, and unions are now seriously considering what happens when the concept of a nursing home is less of an institution and more of a real community where elders can thrive.

Now a professor at the University of Maryland’s Erickson School of Aging Studies, Thomas is a medical doctor who left the emergency room for geriatrics, surprising himself when he fell in love with elders and those who provide their care. It was then that he discovered he could make life better for them.

“I feel that’s what I was born to do,” he said, by phone from Maryland this week.

Direct Care Worker in Culture Change

When we asked him where the role of the direct-care worker fits into his vision, Thomas said, “Older people are held in low esteem in this country, so people who work with them are held in low esteem. First, we have to tackle ageism in this society in general, because it bears directly on the quality of life of those who work with elders.”

Thomas founded The Eden Alternative,  a philosophy and program that has worked to de-institutionalize nursing homes worldwide over the past 20 years. As we featured on our blog last month, he most recently developed the Green House, a radically new approach to long-term care where nursing homes are torn down and replaced with small, home-like environments where people can live a full and interactive life.

There are now 54 Green Houses around the country, either open or in development. While some are built from the ground up, others are transformed from the old model of the nursing home, receiving “bulldozer therapy,” says Thomas.

This means good things for both consumers and direct-care workers, when meaningful relationships are built on a foundation of dignity, equality, and mutual respect.

“One of the tragedies of long-term care,” says Thomas, “is you take big hearted, compassionate people and put them into itty, bitty little jobs. Culture Change holds promise to the extent that it’s willing to envision bigger jobs for the people doing this work – jobs that offer more decision-making autonomy and authority, better training and better pay. That’s what we’re fishing for out here.”

Better jobs and diversity of skills

The workforce you get is based on the jobs you have to offer, he says.

“Without attractive jobs, you can’t wake up and say we have a magnificent workforce. I oppose the idea of attracting new people into the field to take jobs that are not worthy of them. I don’t want to recruit people to work in the current authoritarian regime. I want people to be attracted to our field because we offer tremendous jobs with great fulfillment and personal growth.”

When we asked Thomas what skills workers will need in the future, he said, presuming the success of the culture change movement, those who work with elders will have the wellbeing of elders in mind. They’re going to need a wider range of skills because the focus will be on the people they care for and not on service to their department.

Workers will need to work cooperatively. With a more team-based system, they will need to carry out plans together, have greater communications skills, a wider range of technical skills, and community building skills.

“Healthy communities help those who live there and those who work there,” he says, adding, “we’ve got a big challenge to upgrade the workforce to match the philosophy of culture change. That’s going to take decades of work, actually.”

– Story by Dinah Cardin

For more information on how to ensure your workforce has the necessary skills to support culture change, contact Susan Misiorski, PHI Director of Organizational Culture Change, smisiorski@PHInational.org.

As the challenge of caring for America’s aging population intensifies, the issue is beginning to get the increased newspaper coverage it deserves. Case in point: an in-depth series that has been offered up from a small daily paper out of Utah (hat tip to The New Old Age).

Gray Area: Utah As It Ages features sparsely written vignettes examining the lives of elderly people in Utah when they were young and their current challenges with aging. Accompanying each story are intimate black and white photos of wrinkles, smiles, and struggles.

There are also audio slideshows that feature the shaky voices of those with dementia, the tone of concern from their spouses and loved ones, and the undeniable compassion felt by the direct-care workers whose lives become emotionally entwined with those for whom they care.

Commenting on national crisis

The Deseret News of Salt Lake City has crafted this comprehensive, beautiful online series that began in late October and runs through December.

Here is how they introduced the series: “When we think about our futures, most of us skirt the part of the picture that might include dementia, dependency and Depends. And we forget that it might also include newfound meaning, new friendships and second chances to reinvent yourself. In Gray Area: Utah As It Ages, the Deseret News will confront the ups and downs of — let’s not pussyfoot here — old age.”

One audio slideshow, called “The Juggler and the Opera Singer,” pays homage to Bill Gnadt, who was the world’s foremost juggler of heavy objects and power tools and Tatyana Sokolova, a former opera singer in Russia, who is the CNA who cares for him.

Summing up the issue

A Nov. 17 piece called Intimate Strangers, Who’s Caring for Elderly? sums up the issues for direct-care workers: “For all this hard work, and the kindnesses they provide for families who can’t or won’t take care of an elderly relative, CNAs are paid about $10 an hour. Nationally, nearly 30 percent of direct-care workers (who include CNAs and the noncertified personal aides who do home care) live in households at or near the poverty level, and more than half have no health insurance.”

“We pay them such paltry wages and expect them to take care of the people who should be our most revered,” says Marilyn Luptak, assistant professor in the University of Utah School of Social Work.

An accompanying audio slideshow features photos of frail elderly women being helped in and out of bed by CNA Juanita Albor who tells her story:

“You get to know them when they’re sick, when they’re sad, when they’re happy – we get to share everything with them. In fact, when I have somebody pass on, I go home crying.… You give them love. You give them everything. It’s impossible not to be attached to them.”

Making an impact

The journalistic effort seems to be having an impact locally. In conjunction with the series, the newspaper reported that 60 people turned up this month at the Salt Lake County Government Center to a town hall meeting on caring for aging loved ones and gaining access to Medicaid. Experts from various city, county and state aging and caregiver agencies spoke on a panel discussion.

“This issue requires economists, psychologists, social workers, physical therapists, doctors, nurses and lawyers because it takes a team approach, believe, to deal with this issue,” said Scott Wright, director of gerontology at the University of Utah. “So the biggest challenge is to get all these groups to work together so that we can have successful outcomes.”

A reception followed that featured photos from the series by Deseret News photographer Laura Seitz.

One hour into the final presidential debate last night, Barack Obama answered a question about the country’s health care crisis, remarking that the issue “will break your heart over and over again.”

The candidates took this final debate opportunity to mention ideas like putting health care records online, establishing more walk-in clinics, and the need to address childhood obesity.

What they didn’t mention was the issue of long-term care.

Well… The presidential debates are over and the general election is fast approaching. Given the limited amount we’ve heard from our candidates on long-term care, do you have an opinion on who would better address this issue? Who do you think will best prepare America to care for its aging population?

Some facts to consider:

• The population over 65 will more than double between 2000 and 2030.
• By 2016, America will need more direct-care workers than teachers from K-12.
• Real wages for personal and home care aides are falling while worker demand increases.
• Direct care workers are twice as likely to be uninsured than other workers
• Nursing homes lose up to 70% of their workers to turnover each year.
• Nursing aides, orderlies, & attendants are over 400% more likely to experience an injury than the average worker.

Aaron Toleos, Online Communications Director
atoleos@phinational.org

The next day, Garrison Keillor (pictured below), best known for his radio show “A Prairie Home Companion” and his stories of Lake Wobegon, referenced Goroncy’s situation in a a story for his nationally syndicated column.

Keillor commented in his usual folksy way:

“In Philly, a woman earns $10.30/hour to care for a man brought down by cystic fibrosis. She bathes and dresses him in the morning, brings him meals, puts him to bed at night. It’s hard work lifting him and she has suffered a painful hernia that, because she can’t afford health insurance, she can’t get fixed, but she still goes to work because he’d be helpless without her. There are a lot of people like her. I know because I’m related to some of them.”

As the crisis in long-term care grows in severity, it’s encouraging to see the plight of direct-care workers drawing the focus of media and to see the importance of direct-care work being publicly recognized. Public recognition of the problem is an important step along the path to achieving the fundamental change we all know is necessary if America is to be prepared to meet the challenges presented by its rapidly aging population.

Aaron Toleos, Online Communications Director
atoleos@phinational.org

By 2016, we will need a million more direct-care workers to care for our elders. But direct-care jobs pay poverty wages and have massive rates of turnover. How will you ensure that America has a workforce that is prepared to care for its aging population?

Thank you to everyone that followed through with this request. Unfortunately, the question was not asked.

Keeping the Pressure On

This week, PHI is encouraging readers to submit the question directly to the presidential candidates through their websites at BarackObama.com and JohnMcCain.com.

Please copy and submit our question from above or formulate your own. If you need ideas for the latter, I recommend taking a look at the following PHI resources:

• National Policy Agenda: Quality Assurance (pdf)
• National Policy Agenda: Training & Support (pdf)
• National Policy Agenda: Wages & Benefits (pdf)

The final presidential debate is scheduled for Wednesday, October 15, at Hofstra University. The host will be Bob Schieffer.

Aaron Toleos, Online Communications Director
atoleos@phinational.org

PHI submitted the following question:

By 2016, we will need a million more direct-care workers to care for our elders. But direct-care jobs pay poverty wages and have massive rates of turnover. How will you ensure that America has a workforce that is prepared to care for its aging population?

How YOU can submit a question (deadline Friday, Oct. 3)

Here’s how you can resubmit PHI’s debate question or submit a question of your own:

• Go to www.mydebates.com
• Click “continue as a guest”
• Wait for animation to end or click “skip this”
• Enter your question (or resubmit ours)

If you do submit a question, please let us know by posting a comment below.

(hat tip to The Future of Aging blog)

Aaron Toleos, Online Communications Director
atoleos@phinational.org