Independence Care System: Managed Care for People with Disabilities

The goal of Independence Care System is to enable people with disabilities to remain at home or in the least restrictive setting possible by integrating the full range of primary care, acute care, and home and community-based services in a comprehensive, flexible manner. Internet publication URL:

by MaryAnn Wilner, Ph.D. & Ann Wyatt, CSW, NHA, 1998

Dr. Wilner is Director of Health Policy, Paraprofessional Healthcare Institute, and works in collaboration with consumer, worker, and high quality provider agencies to educate state and federal policymakers about "the labor impact of healthcare policy." She also develops advanced educational programs for the home health aides in the Cooperative network. Ms. Wyatt is Director of Care Management, Independence Care System, and has been instrumental in designing Independence Care System. 

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The following is an article from American Rehabilitation Volume 24, Number 3 Summer Autumn 1998 Personal Assistance Services Part 1 of 2. American Rehabilitation is the official publication of the Rehabilitation Services Administration (RSA) 330 C Street S.W. Washington D.C. 20202-2531 


The healthcare system in general, and managed care programs in particular, often view people with disabilities as "problem consumers" who are not easily treated due to their multiple, interrelated conditions and impairments. Independence Care System (ICS) will be the first managed longterm care program in New York State designed expressly to meet the needs of people with disabilities. The other existing and planned programs in New York state focus on the elderly. The goal of Independence Care System is to enable people with disabilities to remain at home or in the least restrictive setting possible by integrating the full range of primary care, acute care, and home and community-based services in a comprehensive, flexible manner.

Through ICS we will demonstrate a managed longterm care approach that builds on NYC's existing system of healthcare and social service providers in developing a specialized program for each of the ICS members and highlights the way home care paraprofessionals can play a vital role in supporting people with chronic illnesses to live independently at home and in their communities.

ICS is expected to begin in January 1999. Our program plans to enroll 800 participants in the first 3 years of operation and 2,000 within 8 years. Two hundred people are projected for enrollment in the first year and 300 people per year in the following years. 

Target Population

ICS will serve people with significant physical disability or chronic illness who are eligible for nursing home level of care and Medicaid benefits. This includes primarily younger adults with significant disabilities, such as quadriplegia, paraplegia, poliomyelitis, muscular dystrophy, and multiple sclerosis. ICS will also serve a relatively small number of older people who wish to receive consumer-directed personal care services.

People with disabilities want to remain at home for as long as possible, to be supported by family, friends, and familiar service providers. Individuals with severe disability are exclusively neither acutely nor chronically ill. Instead, their conditions tend to be longterm, often degenerative, with episodic flareups that may have an uncertain prognosis. Their concern is much less with "curing" their illness than with managing their illness with maximum dignity and comfort. As a result, the clients require care that recognizes and responds to their very particular needs - care that is delivered in a coordinated, "seamless" manner and blends both medical and support services. They also require continuity of care so that both client and family can be supported emotionally and psychologically - not just medically - over extended periods of time.

Two of the most critical services for living at home or in the community - primary care and paraprofessional home care - are not easily tailored to meet individual needs. The typical client with disabilities either has no accessible primary care physician or, at best, relies on a physician who has little knowledge about chronic illnesses and severe disabilities. The result is discontinuous and, at times, even conflicting medical advice as well as a general failure to monitor closely the progress of chronic conditions, lowlevel illnesses such as colds or infections, and changes in mental status. Unattended, these conditions often lead to dangerous complications ranging from pneumonia to substance abuse. Too often, the results are unscheduled hospital and emergency room visits that are not only very costly but are also truly avoidable. Physicians are also often unaware of the importance of decent nutrition, safe surroundings, and adequate exercise for patients with disabilities.

Paraprofessional home care is widely regarded by many disabled individuals as a primary support for independent living. Home care aides are the immediate link between client/family care givers and professional service providers, particularly in terms of daily support for self-care and prevention programs, early detection of problems, and changes in physical condition. Yet within the formal service system, the paraprofessional is often perceived as a "glorified domestic servant" and relegated to second-class status. Therefore, paraprofessionals are rarely respected, trained, or communicated with in a way that recognizes their value to the healthcare team. ICS's relationship with Cooperative Home Care Associates, a home healthcare agency that values frontline workers, represents a school of thought about paraprofessional homecare that directly connects investment in the frontline worker with a higher quality of care and self-direction for its clients. This unique role for paraprofessionals differentiates Independence Care System from the few other managed care demonstrations for individuals with disabilities. 

Organizational Structure

Cooperative Home Care Associates (CHCA) is a 14-year-old worker-owned home healthcare agency employing more than 400 African-American and Latina women as home care aides in the Bronx and Harlem sections of New York City. CHCA and its affiliated worker-owned home healthcare cooperatives in Boston, Philadelphia, and Waterbury, Connecticut, have become widely recognized as a model for providing both high quality paraprofessional home care jobs and high quality services to its acutely and chronically ill, disabled, and elderly clients. CHCA received the 1992 "Business Enterprise Award" from the Business Enterprise Trust for social responsibility in business, the 1993 "Brookdale Award for Best Practice in Human Resources and Aging" from the Brookdale Center on Aging and the American Society on Aging, the "1997 Corporate Conscience Award" for employee relations from The Council on Economic Priorities, the 1998 "Gloria Award" from the Ms. Foundation, and the 1998 "Advocacy Award" from the Home Care Association of New York State.

Together with its nonprofit affiliate, The Paraprofessional Health Care Institute (PHI), CHCA sponsored the development of Independence Care System. In 1997, New York State passed legislation enabling the Institute and Cooperative Home Care to operate ICS as a managed long-term care demonstration program.

ICS will be a nonprofit organization. Its board of directors will consist of consumers, major stakeholders in service delivery for this population, the Paraprofessional Health Care Institute, Cooperative Home Care Associates, Visiting Nurse Service of New York, and Concepts of Independence (a fiscal agent that receives Medicaid funds and pays wages and benefits for paraprofessionals hired, trained, supervised, and dismissed by consumers). A consumer advisory council has been established consisting of representatives of advocacy organizations. The program will have a full-time ombudsperson available to all ICS members. 

ICS Program Description

Independence Care's program has four key elements:

  1. Consumer Participation. We are building a new framework for balancing provider and consumer perspectives that incorporates substantial consumer participation in governance as well as a role for consumers in care planning and care management. Encouraging client self- direction recognizes the client's and family's right to maximum autonomy while still obtaining support from the formal service system. 
  2. Emphasis on Home and Community-Based Care. We emphasize a "consumer's eye view" of the service network, focusing on home care and community-based care. Primary care, home care, and other community-based services will substitute for far more expensive inpatient and institutional care. Within the provision of home care, the model particularly highlights paraprofessional services. 
  3. Full Range of Services. We will offer the full range of supports and services that consumers value. This includes: an option of consumer-directed paraprofessional care; a service of specialized and highly trained home care aides; respite care for families; consumer peer training; care management; and social day care. These services will be widely available to consumers who will be afforded maximum flexibility in their use. 
  4. A Specialized Integrated Network. We will coordinate care over time, with multiple providers, and across primary, acute, and long-term care settings. The process of care will appear "seamless," so that information obtained from the consumer is shared and used by various providers (and is not repeatedly requested from the client) - reducing the use of specialists and clinics, and eliminating duplicative tests, or worse, countervailing medications.

ICS will initially offer a benefit plan which will include care management, home healthcare, personal care, adult day healthcare, durable medical equipment, transportation, prescription and non- prescription drugs, podiatry, dentistry, optometry, audiology, home delivered meals, social day care, respiratory therapy, social and environmental support, rehabilitation services, and nursing home care.

Inpatient and outpatient hospital services, physician services, and several other areas will initially be excluded from the Medicaid capitation arrangement; however, care will be coordinated by ICS. Providers will bill Medicare directly for Medicare covered services. This plan will become fully capitated, including all benefits, when an appropriate waiver is obtained by the State Department of Health from the Federal Health Care Financing Administration. We expect a waiver to be obtained by the year 2002.

ICS will be built around care management teams. Upon enrollment, each member will be assigned to a physician, a nurse practitioner, a nurse, and a social worker. Home care aides and other providers will also be members of the team. Different team members will assume responsibility for care coordination, depending on the needs of the client. Each nurse practitioner will provide support for approximately 50 clients; nurses and social workers will each have caseloads of about 25. Caseloads may be smaller or larger, depending on client need. Care planning, care management, and conflict resolution will be the overall responsibility of the care management team, under the leadership of the care coordinator.

The ICS service network will have a broad array of options and will be diverse in specialty and geographic capabilities. ICS members will be able to retain their physicians and home care aides if they wish, as long as the provider agrees to use our standards and protocols. This network will continuously work toward integrating its activities through interdisciplinary training, information systems, and practice guidelines.

The ultimate success of the program will depend in large part upon our ability to establish a sense of community among our caregivers and our client members. With this sense of community will come the trust, loyalty, and mutual support that provide the basis for a successful long- term relationship. This is the philosophy that has driven the development of Cooperative Home Care Associates and The Paraprofessional Health Care Institute for the last 14 years. 

Essential Role of Paraprofessionals in ICS

Home health aides and personal care aides are more important in a cost constrained environment than under a fee for service system. By being an integral member of a consistent team responsible for working with the consumer, the aide becomes a coach, an observer, and a partner in care. To prepare each of them to assume the added responsibilities of working in the ICS program as a specialized aide, our CHCA aides will receive additional training, which will focus on deepening their understanding of the rights and autonomy of consumers who wish to direct their own care; sharpening their skills at communicating and negotiating with consumers and team members; and broadening their perspective so they can appreciate the world as experienced by people with disabilities. They will also learn specific skill competencies associated with clients with selected types of disabilities.

Our specialized training program will expand beyond the 4-week training currently required of every CHCA aide. In our cooperatives we have sought to replace the typical "low-investment," "temporary personnel" approach with a strategy of "high investment" in frontline employees - emphasizing careful recruitment, decent wages and benefits, full-time work, extensive training, counseling, and support. Our workerownership model further reinforces the enterprise, both as a paraprofessionaloriented business and as a community of coworkers. Each employee has the opportunity to own a single share of the company; annual dividends paid to worker-owners in recent years have ranged between $250 and $600.

Our direct experience within our network of worker owned home care agencies demonstrates that frontline workers need the following kinds of supports in order to ensure both a decent job and the delivery of high quality care:

  • Adequate Compensation. Frontline workers need a living wage with adequate pay and benefits. Yet, most health paraprofessionals are women who are working but poor - in 1993, more than 600,000 direct-care workers lived below the poverty line. Paraprofessionals are asked to provide high quality health and personal care yet they are often not provided health insurance.
  • Stability. To have a job that is financially secure, aides need guaranteed hours of work. Home care service agencies that typically offer only parttime jobs have found that offering guaranteed hours to a portion of their workforce dramatically reduced turnover.
  • Selection. Retention of high quality workers requires careful selection of workers who are mature, sensitive, and interested in caregiving work, careful screening can save agencies both time and dollars by reducing expensive turnover.
  • Sufficient Training. Organizations that believe in the capacity for employee growth must provide opportunities for them to grow. CHCA in the south Bronx provides 4 weeks of training - twice the federal requirement - and emphasizes communication, problem solving, psychosocial development, and job readiness, in addition to all the clinical skills required by regulation. The training team includes former home health aides who have advanced to associate instructors - a powerful role model for new trainees.
  • Supervision. Paraprofessionals need good supervision to manage the complexity of cases they are now seeing in home health and nursing facilities. Yet, few nurses or coordinators have been trained in management and supervision. Our network's Home Care Associates of Philadelphia has begun a coaching program that provides supportive supervision to aides.
  • Support. Peer support is as important as supervisory support. Some nursing homes are starting to sponsor "CNA support groups" for aides who come together to exchange client information and caring techniques, support one another, practice communicating with peers and supervisors, and have a safe place to grieve the loss of residents who have died. At CHCA, a former home health aide who is now an associate instructor conducts a "Rap Session" that functions as a peer-oriented support group for new aides.
  • Upgrading and Promotion. Although many paraprofessionals love their one-on-one work and have no desire to become trainers, nurses, or supervisors, they still want the respect and pay increases that seniority deserves. CHCA has promoted a small core of aides to higher level positions such as associate instructors. Several are now in part-time administrative positions assisting with competency training and office work when they are not in clients' homes. One home health aide has become a registered nurse and another a social worker. We are also offering a number of college courses - delivered at the workplace - so that paraprofessionals can expand their knowledge and advance their education.

Aides selected to work with consumers in the new ICS program will be well- prepared to assume their new responsibilities. They in turn will become teachers and mentors for new aides who enter the ICS program as membership enrollment increases.