This is the third consecutive year that the Senate has unanimously approved a resolution to designate a specific week to honor direct support professionals. The resolution (pdf) was sponsored by Sen. Ben Nelson (D-NE) and had multiple co-sponsors.

A dozen states are also recognizing Direct Support Professionals Recognition Week this year.

Advocacy Planned

The American Network of Community Options and Resources (ANCOR) and United Cerebral Palsy (UCP) are calling on direct support professionals, self-advocates, and family members to “Call on Congress” on September 14 to let them know about the need for better wages for community residential direct support professionals.

The groups are urging that members of Congress support the Direct Support Professional Fairness and Security Act (H.R. 868), which would amend Title XIX of the Social Security Act to provide funds to states to enable them to increase the wages paid to targeted direct support professionals in providing services to individuals with disabilities under the Medicaid program.

ANCOR is sponsoring a Governmental Activities Seminar and a “Direct Support Professionals to DC” event from September 12-14. The three-day event will culminate with visits to members of Congress on the final afternoon.

Providers are encouraged to bring their direct support professionals with them to Capitol Hill. Registration information is available online.

ANCOR has also provided 10 ideas (pdf) for events and other actions to celebrate Direct Support Professionals Recognition Week.

– by Deane Beebe

ANCOR continues its advocacy work for direct support professionals (DSPs) with two announcements this month: It has selected the winners of its 2008 DSP TV Online video contest, and it has won the unanimous support of the U.S. Senate for its National Direct Support Professionals Week.

The six DSP TV Online winners — all both by and about DSPs and the people they work for – are now available for viewing on ANCOR’s website. (Above, see the winning video.) All six are full of heart. They convey the pride and joy dedicated DSPs take in their profession, the difference they make in the lives of the people they work with, and the mutual respect and affection that develop between workers and clients. They also contain calls for better pay and benefits, along with a lot of singing, dancing, and enthusiastic expressions of gratitude. ANCOR calls them “part of a greater effort to raise awareness of the workforce wage issue and give DSPs the ability to tell their stories in their own words, and as only they can.”

In addition, the U.S. Senate has recognized the week of September 8 as National Direct Support Professionals Recognition Week. (pdf) The unanimously approved resolution is timed to coincide with ANCOR’s annual Governmental Activities Seminar and its DSPs to DC event in Washington, D.C.

Elise Nakhnikian, Senior Online Editor
enakhnikian@phinational.org

Recommendations for Establishing a Credentialing System for Iowa’s Direct Care Workforce,

The report documents work to be done to implement recommendations published by the task force in December 2006.  Work began on the project last month.

Iowa’s proposed three-tiered credentialing system is intended to ensure that all direct-care workers are adequately prepared for the job. It also aims to make workers’ duties and qualifications clear to the consumers and family members who hire them, to acknowledge their special skills, and to correct the inequities of the current system, which requires training in some settings but not in others even when the same set of services is delivered in both.

The report includes 17 recommendations, a timeline, and detailed lists of criteria, qualifications and resources needed to create:

• A standardized curriculum for all new direct-care workers, regardless of setting
• Educational equivalency with other health care professions
• Standardized qualifications for educators and trainers
• Continuing education requirements for direct-care workers, educators and trainers
• Governance

It also includes an extensive list of specialty skills that should be eligible to receive “endorsements.”

A 16-page implementation plan (pdf) will guide the group’s work, with adjustments as needed as the project progresses.

Elise Nakhnikian, Senior Online Editor
enakhnikian@phinational.org

PHI also asked the government to address the exclusion of direct-care workers who are “independent providers” from federal/state employer surveys, which PHI believes results in a serious undercount of workers counted as Personal and Home Care Aides. Independent providers refer to direct-care workers who are either self-employed or who are directly employed by consumer households.  

Workforce data can play a critical role in assessing things like the effectiveness of state initiatives to attract and retain greater numbers of direct-care workers, or the impact of policies designed to improve direct-care worker wages.

PHI recommends that the government’s three occupational categories for direct-care workers be changed as follows:

• Nursing Aides, Orderlies and Attendants. Split this category into two, separating those who provide hands-on patient care under the direction of nursing staff (nursing aides) from those who do not (orderlies and attendants).
• Home Health Aides. Change the description of their duties to reflect increased responsibilities, including monitoring of health status, feeding, toileting, ambulation, medication management and administration, and also sometimes non-health care related tasks such as preparing meals, housekeeping, and laundry.
• Personal and Home Care Aides. Update the description of their duties to reflect the broader range of tasks they perform, and to refer to the range of populations they serve: older adults, people with chronic illnesses, people who are convalescing, and people living with intellectual, developmental, and physical disabilities. Also, change the occupational title – to Personal Care Assistants – to make it more current with the terminology that is developing within the long-term care industry.

PHI also urges the government to revise its employer sampling frame in order to capture the hundreds of thousands of personal and home care aides who are employed directly by an individual or family or who are self employed. For example, more than 400,000 personal and home care aides are employed through public authorities in five states – California, Massachusetts, Michigan, Oregon, and Washington – but the current count leaves them all out. 

Why it matters to get the facts right

The proposed updates are needed for several reasons. First, as the report notes, there is “considerable confusion on the part of workers, consumers, employers and policy makers concerning just which workers are captured by each of the three SOC codes.” The sheer size of the workforce, which is already more than 3 million strong and expected to grow to 4 million by 2016, makes it important to get these facts right.

Second, the tasks performed by home- and community-based direct-care workers are evolving in important ways as they care for more nursing-home-eligible clients with complex care needs. These new demands translate into “a much greater need for skill, judgment and personal accountability,” says the report.

The proposed changes would result in more accurate employment and wage estimates for “federal and state policymakers who currently find themselves hampered by a lack of ongoing, reliable state-based information about their direct-care workforce,” the report notes.  

Given the truly historic growth expected to occur over the next decade in demand for direct-care workers, this is a critical time to update the title and task definitions found in the official direct-care worker occupational codes. Aligning these codes and definitions more with actual practice, and upgrading the sampling frame for employer and worker surveys using these job codes, could help us get more accurate counts of these workers and more accurate estimates of their wages. And that, in turn, could substantially improve the value of the federal and state data we generate about this workforce.

Read PHI’s submission to the SOC Policy Committee. (pdf)

e Seavey, Director of Policy Research
dseavey@phinational.org

Subscribe to the HCHCW newsletter

We’ve been covering news from our Health Care for Health Care Workers (HCHCW) campaign in PHI’s news stories and Quality Care/Quality Jobs newsletter ever since the campaign started years ago — and we’ll keep on covering the really big stories, since PHI’s beat is whatever affects the direct-care workforce.

But now HCHCW has launched its own free biweekly e-newsletter. The HCHCW newsletter drills deeper than anything else you’ll find into the shortage of affordable, quality health care coverage for direct-care workers. It analyzes the problem, explores solutions, describes the progress of the HCHCW campaign and its partner organizations, provides links to valuable resources, and more.

If you care about this crisis and want to keep up with the latest developments and strategies, you’ll want to add your name to their list.

Check out past issues

Elise Nakhnikian, Senior Online Editor
enakhnikian@phinational.org

DSPs to DC will convene workers, people with disabilities and their family members, providers, and advocates to “deliver a unified message about the direct support workforce crisis and the need to pass legislation to help stabilize this critical workforce,” according to an ANCOR email. The event will be held on September 8 and 9, in conjunction with ANCOR’s Governmental Activities Seminar.

On the morning of September 9, the DSPs will attend an advocacy training on the ANCOR-sponsored bill, which would amend Title XIX of the Social Security Act to increase the wages paid to direct support professionals whose services are funded by Medicaid. That afternoon, they will attend a rally on the Capitol grounds and meet individually with their representatives.

Direct support professionals who are accompanied by a paid seminar registrant may attend free of charge.

Elise Nakhnikian, Senior Online Editor
enakhnikian@phinational.org

Hess worked for years as a CNA at the Lebanon Valley Brethren Home in Palmyra, Pennsylvania, becoming a Shahbaz (the Green House® name for direct-care workers) when the home converted to the Green House® model nine months ago. Since then, she told the committee, not a single Shahbaz has left. “This a big improvement over my facility’s 23 percent annual turnover rate for nursing assistants, and an even bigger improvement over the national turnover rate for nursing assistants, which I understand to be slightly over 70 percent per year.”

“The working life we now enjoy is very demanding, because we do cooking, cleaning and activities in addition to nursing care, but it is so much more fulfilling,” Hess added. “We are now able to do all of the ‘extras’ that we rarely had time for in the traditional nursing home. We can let an elder linger in a luxurious whirlpool bath because there is no time pressure to get onto the next bath. We can sit with the ladies and do manicures, or just chat on the patio with them while enjoying afternoon iced teas.”

The hearing was on person-centered care. It gathered seven witnesses to offer policy recommendations and first-hand accounts.  Senator Robert P. Casey, Jr. (D-PA, pictured) convened the hearing as background to the Promoting Alternatives to Nursing Homes Act, a bill he will introduce soon that would create a loan fund for establishing small house nursing home alternatives. 

It covered a lot of turf, from acute care to primary care to long-term care and including testimony about the need for better transitions between settings. But threaded throughout were eloquent references, many of them from the senators themselves, to the importance of direct-care workers and their relationships with the people they assist in delivering person-centered care.

“The movement toward person-centered care has been called a revolution,” said Senator Casey in his introductory remarks. “But though it is revolutionary and new in what we are doing, it is also a profound return to the bedrock values of respecting our older citizens and living the golden rule…. The solutions we’ll hear today are a win-win for everyone: they’re a win for older citizens, a win for those who provide the care, and a win for their families….

“They provide direct-care workers with long overdue respect and job satisfaction.”

Download testimony or watch the webcast of the two-hour hearing

Elise Nakhnikian, Senior Online Editor
enakhnikian@phinational.org

Family members attested to the importance of paid caregivers, employers discussed the increasing difficulty of recruiting enough workers, and direct-care workers talked about the difficulty of surviving on their wages as gas prices and other expenses increase.

According to an article in the July 2 Dunn County News, the legislators in attendance “admitted that for some of them, the issue had not come up on their radar.” One of the three, Representative John Murtha  (pictured), said: “It was touching to hear the stories presented tonight. We think it [disability/aging] won’t happen to us — but you got through to me.”

But the legislators said there was nothing they could do to increase reimbursement and thus improve caregiver wages, since Medicaid formulas are set by the federal government. T the same time, Senator Pat Kreitlow counseled the audience to “keep the drum beat beating,” adding: “Budgets are organic and are based on real people’s moms, dads, siblings, and needs.”

The Eau Claire meeting was arranged by the West Central Wisconsin Workforce Alliance.

Elise Nakhnikian, Senior Online Editor
enakhnikian@phinational.org

Stakeholder Recommendations to Improve Recruitment, Retention, and the Perceived Status of Paraprofessional Direct Service Workers in Texas (pdf) distills input from key stakeholders into 14 recommendations on how to improve turnover and the perceived status of the state’s direct service workers.

With the help of PHI, whose technical assistance was supplied to the project by the Centers for Medicare and Medicaid Services’ National DSW Resource Center, the initiative divided the recommendations into compensation, opportunity, and support – the same three categories used in PHI’s Nine Elements of a Quality Job.

Perhaps the most important outcome of the initiative, according to the report, is that it “raised awareness of DSW issues at the state, regional, and local level.” But the stakeholder recommendations it gathered may have a life beyond the end of the project. The Texas Direct Service Workforce Advisory Committee prioritized the 14 recommendations, submitting six to the state’s Promoting Independence Advisory Committee:

1. Offer direct service workers a livable wage and adopt measures to ensure investment in the direct service workforce
2. Offer direct service workers benefits
3. Make training accessible to direct service workers
4. Employ effective recruitment strategies including involving direct service workers in the development of best practices and targeted recruitment
5. Establish direct service worker job standards
6. Recognize and reward the contributions of paraprofessional direct service workers

The stakeholders interviewed included national experts, lead agency representatives, members of community groups, advocates, direct service workers and their employers, consumers, and state legislators.

Elise Nakhnikian, Senior Online Editor
enakhnikian@phinational.org

“It’s not viewed that way by society – or, frankly, by many employers – but not everybody can do this job. You have to be smart; you have to be able to problem solve; you have to be flexible and a quick thinker. You also need patience and empathy and creativity. We’re not going to get anywhere in terms of policy advocacy or getting the supports we need in place without clearly articulating that this is a highly skilled job.”

Hewitt is a senior research associate at the University of Minnesota’s Research and Training Center on Community Living. The center’s mission is to support community living for people with intellectual and developmental disabilities – and that has led to a focus on strengthening and supporting the direct support workforce.

“The quality of people’s lives is directly related to the quality of the support that they get, and that support is provided by direct support workers,” says Hewitt. “So a lot of our work is in trying to understand workforce challenges – and, more importantly, trying to develop tools and resources for community providers, to help them improve their retention rates and the competence of their workers.

“Direct support work is not just about keeping people clean and fed and safe. It’s about helping them make friends; helping them evolve relationships; helping them decide what activities in the community they’re interested in and connecting them to those supports. It’s about helping them have a life.”

To improve clients’ lives, you need to reduce worker turnover
The center’s research into the workforce is based on “the premise that people’s lives are better if they have a well-trained and stable workforce, so if you can reduce turnover you can improve lives,” Hewitt explains. “We did a fairly comprehensive study in Minnesota that showed that people who received care in organizations with higher rates of turnover had worse outcomes.”

Hewitt’s colleague Sheryl Larson have conducted a longitudinal study of direct support workers that Hewitt calls “seminal,” interviewing them when they were hired and then again over the course of a year to learn why so many left their jobs within three to six months. Common reasons for departure included:

• Poor wages and benefits;
• Limited, nonexistent or inefficient supervision;
• Conflicts with coworkers; and
• Not having understood what the job entailed when they signed on.

That study led to what Hewitt calls “applied, or intervention, research.” In several studies, Hewitt and her colleagues have tested various interventions aimed at improving those problems to see if they affect turnover rates. The findings, she says, are encouraging: “More and more, our work is showing that organizations can change behavior, culture, and practice in a way that will benefit the workers.”

What employers can do
“Wages and access to benefits really matter. We would be remiss not to say that,” says Hewitt. “But that said, there really are things that organizations can do differently now, without more money, just using the resources they have more wisely, that can change the turnover outcomes within their workforce.

“That’s often very hard for providers to accept, that they create environments in which workers feel devalued, feel incompetent, feel disrespected, and there are things they can do to improve.”

Strategies the center teaches to employers include:

• How to identify and hire the right people for the job, rather than hiring “whoever walks through the door”;
• Realistic job previewing, a technique designed to ensure that people know what the job entails before signing on to do it;
• Effective supervision, through the use of the coaching supervision model and other strategies; and
• Empowering direct support workers by including them more in decision-making.

Sharing knowledge about the workforce across settings
The research and training center is also sharing what it knows about improving direct support jobs through the National Direct Service Workforce Resource Center, a project of the Center for Medicare and Medicaid Services. Hewitt’s group is one of three organizations selected (the others are PHI and the Institute for the Future of Aging Services) to provide technical assistance to states that are strengthening their home- and community-based direct care workforces.

“We help states either develop policy or programs or improve their understanding of workforce issues,” Hewitt says of the technical assistance providers. “And we spend time together as kind of a think tank. Our time together and our reporting has solidified our understanding that a lot of our issues are the same across the various sectors — intellectual and developmental disabilities, behavioral health, aging, physical disabilities, etc.”

The TA providers are also working on developing a set of recommendations for how to strengthen the direct-care workforce across all home- and community-based settings. As the background for those recommendations, Hewitt and her colleagues from the DSW Resource Center are writing a comprehensive literature review of “what is known about the workforce across the behavioral health, aging, intellectual and developmental disabilities and physical disabilities communities.” The paper, which is due out in late August, will be available at the DSW Resource Center website.

Primarily, the things that we struggle with are similar
In the past, providers and researchers in the field of aging services and physical disabilities rarely mingled with their counterparts in the intellectual and developmental disabilities or mental health fields. Hewitt is glad those days are coming to an end. “We would all do better if we communicated more across the sectors, if we shared ideas and resources,” she says. “From a policy point of view, there are benefits in coming together with a single message from a policy advocacy point of view from across all sectors – and I mean mental health as well.

“Unfortunately, services tend to follow funding, so as long as the funding sources for the different services are doled out from separate silos, the idea that all direct-care workers will be trained the same and treated the same is not realistic.”

The silo effect is “absolutely” the main cause of the disconnect, Hewitt believes, but there have also been significant differences in the way services were delivered. She sees those differences blurring as services for the aging and people with physical disabilities become more home-based and person-centered, catching up to a trend that started about 20 years ago in the intellectual and developmental disabilities field.

Once you’re delivering home- and community-based care and tailoring it to individual preferences and needs, workforce issues tend to converge regardless of what kinds of clients you’re assisting. “Primarily the things that we struggle with are similar: the logistics of finding enough workers, giving them enough hours, getting them where they need to be, getting them trained.”

Another change in aging services that has brought the silos closer, she says, is “the realization that you need an additional skill set and different levels of care to work with people with who have unique needs, like Alzheimer’s.” Many people with intellectual and developmental disabilities who receive long-term care need special assistance in dealing with “challenging behaviors – things like self-injurious behavior, property destruction, responding emotionally to stimuli in a way that is not typical. That’s similar to what can happen with Alzheimer’s,” she notes.

We need to support relationships between workers and the people they assist…
One of the most important things she has learned from her work, Hewitt says, is that “effective direct support is about relationships. I think we try too hard to objectify the work and to put barriers between the relationships. But in the end, it only works for the client if there’s a positive relationship. And if you ask workers why they stay, despite all the barriers — the low wages, the lack of benefits, the often bad or nonexistent supervision, the organizations that don’t respect them — the reason is their relationships with the people they provide support to.

“We have direct support workers who have been working for the same clients for 20, 30 years. These are lifelong relationships that result in those people having better lives. Yet we try to build policies and procedures that deny those relationships.

“I get that employers have to be concerned about liability, but if we stopped hiring people who shouldn’t do this work, we wouldn’t have to worry about that.”

… and we need to support families better
Of course, finding enough of the right people is not always easy – and it will only become more of a challenge as more people need services –unless significant changes are made. “I think we have to make the jobs more attractive, certainly, and do better at reaching out to other pools of potential workers,” says Hewitt. “But at the same time, we have to figure out how to give more support to families who deliver services, so they don’t go bankrupt or become emotionally and physically depleted.

“I think that’s what consumer direction is about: trying to figure out how to get people the support they need within the context of their natural family.”

Interview by Elise Nakhnikian, Senior Online Editor
enakhnikian@phinational.org