ISSUES
Day of Dialogue: "Building Shared Awareness and Understanding" - Direct-care Alliance AND People with Disabilities
People with disabilities and the workers who support them are central to the long-term care system, yet they are often its most disenfranchised and least powerful members.
Individuals living with disabilities often struggle throughout their lives to prove that they are competent and in fact have the capacity to live their lives to the fullest. Many require assistance with activities of daily living, yet across all long-term care settings, they seldom receive adequate support. In attempting to access services, people with disabilities too often encounter a lack of respect for their personal wishes, preferences and needs, and when support is offered, it tends to come in the form of demeaning "care" instead of empowering support. This has the unintended effect of robbing people living with disabilities of their hard-won self-confidence, demonstrating a lack of respect for their autonomy, and sometimes eroding their will to accomplish what they can do independently.
Similarly, the frontline workers who provide the majority of the hands-on services and support for those individuals - who go by many titles but will be referred to as direct-care workers for the purposes of this document - struggle with negative images both within and outside the long-term care field. This lack of respect, combined with low wages and few benefits - which leave many full-time workers eligible for public assistance, minimal on-the-job support, and unbalanced workloads - contributes to vacancies in the workforce and makes it difficult for workers to achieve economic self-sufficiency.
These difficult conditions and limits on autonomy are symbolic of the low value placed on those who typically make up these groups: the people with disabilities who need assistance and the women who provide it - especially the women of color who are a disproportionately large minority of the direct-care workforce.
In late June 2003, distinguished leaders from the disabilities community came together in Washington, DC for two days, to engage in an unprecedented dialogue with members of the Direct Care Alliance. The DCA, which sponsored this event, is a national coalition of providers consumers and workers, who have joined together to improve the quality of direct-care jobs - and in so doing, improve the quality of long-term care services and support. The purpose of the DCA, sponsored by the Paraprofessional Healthcare Institute, is to shape both public policy and industry practice toward improving the quality of jobs for direct-care staff (nursing home aides, home health aides and personal care attendants), recognizing these workers as the cornerstones of good care, and thereby improving the quality of care for consumers, in particular the elderly, the chronically ill and people living with disabilities.
With much enthusiasm, the groups began to build a shared awareness and understanding, working towards three goals:
- Explore an understanding of differing perspectives on direct-care (support) workforce issues;
- Begin to develop an understanding of each other's languages and contexts as a way to better understand how people with disabilities can best work with direct-care (support) workers; and
- Explore opportunities to work together to achieve common goals relating to the direct-care (support) workforce
Together we worked to define what constitutes a just relationship between worker and consumer, recognizing a worker's need for a job that provides adequate pay and benefits, while promoting a consumer's need for support, self-determination and autonomy. Stakeholders in our Day of Dialogue agreed that this is a central issue of social justice for both constituents, and that we must remain committed to achieving and maintaining this balance.
Forum participants agreed on the importance of "suspending respective constituencies" in order to learn about each other's differing values and perspectives. Through intense individual conversations, role-play and small group discussions, we began to build a shared awareness and understanding on the following:
The Role and Impact of Language
The use of certain words affects people in the disability community intimately and on a daily basis, and attempting to "smooth over" any problems by saying they're just a matter of wording minimizes important differences communicated by those words - not to mention the importance of language itself. For example, the notion that all individuals living with disabilities need to be "cared for" is not necessarily reflective of the variety of "assistance" and "support" one might require for daily living. Similarly, language impacts direct-care workers as well. For example, being called "the girl," or being "ordered" to undertake a task (rather than being asked) can be equally demeaning. Understanding and respecting each other's perspectives is a first step in overcoming these communication barriers.
The Impact of Low Wages for Direct-care Paraprofessionals
There should be equity in pay and benefits for direct-care (support) workers in all settings, from nursing homes, hospitals, and other institutions to home- and community-based services. The current inequities make facility-based work, although still typically underpaid, more attractive to paraprofessionals, limiting the workers available for people with disabilities who live in the community.
At the end of our discussion, we agreed on two important affirmations:
- The most critical barriers to high-quality relationships between workers and consumers are inadequate pay and benefits for workers. Benefits and wages are symbols of the value we place on workers - and, by extension, the people they serve. Workers in all settings should receive sufficient and equitable wages and benefits.
- People with disabilities do not need to be cared for. The relationship formed between worker and consumer often has a caring element. However, phrases like "take care of" or "needs to be cared for," which are common in our society, are pejorative to individuals with disabilities. We have been "programmed" to believe that a person who cannot verbally communicate his needs must be cared or spoken for, when the real problem is that our society has not devoted enough time to developing ways of communicating with those who cannot use their voices. Who determines who can and cannot communicate? Who determines if someone is competent to make decisions or not? Unless someone is found to be legally incompetent and assigned a guardian, that person maintains the right to make decisions about their personal lives. Rather than "care," most people with disabilities simply need support and assistance in order to proceed with their daily lives.
Final Reflections & Next Steps
Caring is core to the relationship between worker and consumer, but we must define what we mean by words like "care" and "caring" in order to bridge the understanding gap between workers and consumers. In order to arrive at a rudimentary understanding and establish a consolidated front in advocating for policy and practice change, we must first break down the language barriers that divide workers and consumers. The forum participants agreed that similar dialogues were needed on the local and regional levels.
Finally, the stakeholders agreed that we need a well-balanced long-term care system that mutually respects and supports all participants, with a central emphasis on nurturing the relationship between the direct-care workforce and consumers. Such a system should be responsive to consumer needs and wishes, allowing consumers to make decisions independently and autonomously. Efforts like the Day of Dialogue are a crucial step in reaching that goal, but our power to transform the system from within is limited. We must achieve measurable improvement in the delivery of services from the systems that employ, oversee and legislate the long-term care industry, including state and federal departments of health, social services, labor, and housing.
*Day of Dialogue Participants*
Kevin Bail - Evergreen Care Network
Debbie Barisano - Connecticut Association of Personal Assistants
John Booker - Certified Nursing Assistant Independent Consultant
Donna Calame - San Francisco IHSS Public Authority
Janet Heinritz-Canterbury - Paraprofessional Healthcare Institute
Henry Claypool - AIMMM Advancing Independence
Steven Dawson - Paraprofessional Healthcare Institute
Alfred H. DeGraff - Author
Sara Joffe - Paraprofessional Healthcare Institute
Cathy Ludlum - Connecticut Association of Personal Assistants
Lorrene Maynard - Virginia Association of Professional Nursing Assistants
Lillibeth Navarro - CALIF Independent Living Center
Dorothy Northrop - National Multiple Sclerosis Society
Mike Oxford - National Center for Independent Living
Betty Perry - Older Women's League
Renee Pietrantrangelo - American Network of Community Options and Resources (ANCOR)
Joann Poue - Cooperative Home Care Associates
Laurie Powers - Center for Self-Determination School of Public Health and Preventive Medicine Oregon Health & Science University
Carol Rodat - Home Care Association of New York
Pedro A. Rodriguez - Alliance for Retired Americans
Vera Salter - National Clearinghouse on Direct Care Workforce
Marilyn Saviola - Independent Care Systems
Ralph William Shields - New York Brain Injury Association
Carin Tinney - Paraprofessional Healthcare Institute
Dean H. Westwood - Center on Self-Determination Oregon Health and Science University
Bob Williams - AIMMM Advancing Independence
Mary Ann Wilner PhD - Direct Care Alliance
Tom Zwicker - Lakewood Health and Rehabilitation Center
*This document is a summary of the event. The DCA has not requested that the organizations represented by the participants formally approve this statement.
**For more information about the Day of Dialogue or the Direct Care Alliance, contact Patsy Harris at e-mail PHarris@directcarealliance.org
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