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Consumer-directed care is riding a wave of popularity that shows no sign of declining. At least 30 states have introduced some form of consumer choice for disabled and elderly citizens whose care is reimbursed through state funds. (See Private Duty Homecare, January 1999, p. 1.) As more states enact these initiatives, private duty providers are exploring ways to make their services more attractive to clients who might otherwise directly employ caregivers. Two agencies in Illinois have joined forces to do just that.
Under an Independent Choices Project grant from the Robert Wood Johnson Foundation, the Forest Park-based Progress Center for Independent Living, and Salem House, a Lutheran Social Service program in Chicago, are collaborating to introduce consumer choice to clients receiving services through the Illinois Department of Aging Community Care Program (CCP).
The Progress Center for Independent Living is a non-residential self-help and advocacy organization established in 1988 by and for people with disabilities. Salem House is a Medicare-certified home health agency that provides personal care services to elderly clients who qualify for the CCP. The CCP actually does not have a formal consumer-directed component, so the two organizations are including elements of choice used in the state’s waiver program for disabled adults.
Although advocates for the disabled and elderly have clashed elsewhere on the consumer-directed care front, the directors of the Progress Center and Salem House see strength in collaboration.
"Most elderly see themselves as old, not disabled. With our attitude and their numbers, we can be formidable in influencing the industry," says Diane Coleman, JD, Progress Center executive director.
Coleman hopes to duplicate the Progress Center-Salem House collaboration in adjacent counties and ultimately make it a national model. The agencies’ collaboration involves several elements:
• additional training for Salem House employees on client choice and rights, ethics, and the use of assistive technology;
• in-home training of clients on interviewing and selecting caregivers, establishing schedules, and directing care tasks;
• development of a training video featuring both disabled adults and Salem House clients demonstrating ways to participate in their care;
• establishment of a Project Advisory Committee, composed of staff and clients of both organizations;
• a program evaluation conducted by the University of Illinois Institute on Disability and Human Development.
The collaboration started with training for Salem House administrative staff and members of the Project Advisory Committee, immediately followed by Salem House caregivers. In the caregiver training sessions, Progress Center staff, who are themselves disabled, covered such topics as independent living, disability awareness, myths and stereotypes about the elderly, and assistive technologies that staff personally use. The sessions added about five hours to caregiver orientation time.
The first half of caregiver training focuses on incorporating clients in their own care regimen. Caregivers learn to jointly establish care plans, including the times and days of service (most clients are eligible for 20 hours of care each week). They also work with clients to facilitate transfers and other personal assistance according to clients’ preferences.
"The correct way is not always the best way. The client may have done it 20 years [a certain way] and know how to do it safely. We encourage staff to help them as long as they stay within safety guidelines," Cobb says.
Although staff know clients have also received training, they learn techniques to promote more consumer direction. "Some clients think the home health worker comes in and just starts working. And if you’ve lived 77 years without help and you now have to ask, you don’t want to. Aides are instructed to help clients direct them by asking such things as how they want their bed made and how they want their laundry folded," Cobb explains.
The second half of caregiver training addresses assistive technologies. Most think of common assistive devices as wheelchairs, walkers, and bath chairs, but they either aren’t aware of or don’t know how other technologies can help their clients, according to Coleman. For example, most people associate text telephones (TTY) for use by the deaf, but the technology also benefits those who are speech-impaired.
Progress Center staff also work with Salem House clients. A Progress Center trainer visits newly referred clients before Salem House opens the case. The trainer first reviews materials already presented by the state CCP case manager such as the client’s determination of need and disclosure of waivers documents. The trainer also communicates clients’ rights and responsibilities, and gives examples of how clients can direct their care. The trainer then talks with the client about his or her care needs and preferences, and shows a video that portrays how a client collaborated with a caregiver to get the services she wanted.
The stars of the video are the disabled and elderly clients of both the Progress Center and Salem House. Seeing actual clients not only emboldens the elderly to ask for what they want, but also gives them a new perspective about their own condition, Coleman says.
"It can change an elder’s attitude if they see a younger person with more significant disabilities. When people are losing functional abilities they often don’t think of tools, but seeing disabled trainers gives reality to assistive devices, and they think, So what if I’m doing it differently?’" she explains.
Ideally, the collaboration will also enable clients to interview up to three caregivers and choose the one they most want to care for them. Interviewing and selection techniques are part of client training. However, Salem House, like many other private duty providers, does not have enough personal care workers to facilitate such freedom of choice.
Researchers from the University of Illinois Institute on Disability and Human Development conducted pre- and post-training surveys and are still tabulating the results. However, caregivers report they like it, Cobb says.
"It makes them feel like specialists in a way. They like the plan of care development and joint planning. Some are not as comfortable working on their own and like a little more structure," she explains.
"I think the premise is great. It’s a good idea, but we need more homemakers. In the long run, it will be better for us, because if clients and caregivers have agreement and work as a unit, it will be better. Everyone will know up front what’s expected."
With such positive initial results, the two hope to spread the model to other communities. "Our goal is that both other assisted living programs and home care providers will [adopt the model]. It is a marketing and competitive advantage to home health agencies," says Coleman.
• Diane Coleman, JD, executive director, Progress Center for Independent Living, 7521 Madison St., Forest Park, IL 60130. Telephone: (708) 209-1500.
• Donna Cobb, MS, director, Salem House, 7359 S. Prairie Ave., Chicago, IL 60619. Telephone: (773) 873-3400.