INDEPENDENT CHOICES: A National Symposium on Consumer-Direction and Self-Determination for the Elderly and Persons with Disabilities. INDEPENDENCE CARE SYSTEM: A Coordinated Care Program For People With Physical Disabilities

Case Statement
March 2001

INTRODUCTION

Independence Care System (ICS) is a nonprofit organization committed to assisting people with disabilities to live independently. We use the vehicle of a managed long-term care program to coordinate a comprehensive range of services in an integrated, flexible manner. ICS began operation in April 2000 and has approximately 150 members as of March 2001. We intend to enroll approximately 300 people a year for the next three years.

ICS serves Medicaid-eligible individuals over 21 years of age with significant physical disability or chronic illness who reside in New York City. The target population primarily consists of younger adults with disabilities due to severe trauma and/or injury and degenerative neurological and muscular diseases--e.g., spinal cord injury, multiple sclerosis, cerebral palsy and muscular dystrophy.

Physically disabled adults living in the community generally live within severe constraints in terms of available health and social services. They are often viewed as "problem" consumers in the fee-for-service health care system. Most health care providers--from physicians to home care aides--have little training or knowledge about their disabilities. Adults with disabilities often require more time and have more unusual problems than the typical patient or consumer. The implications in daily life of a fragmented system mean that the medical specialist too often cannot obtain consistent rehabilitation services or infusion therapy in the home, or the home health care nurses and aides have little information from the consumer's physician to guide their work.

Further, the mobility needs of severely disabled adults are virtually ignored in this system. Almost every disabled consumer finds it impossible to secure a transportation service that consistently arrives on a timely basis for medical appointments. The consumer whose wheelchair needs maintenance or minor repairs often does not know where to get reliable service or who will pay for it. Yet, access to health care for many people with severe disabilities depends on both an adequate wheelchair and regular transportation.

ICS was established to address these issues. Consumers become members who plan and manage their own health care and social supports in conjunction with care coordinators and service providers. The focus is on coordination of services, identifying gaps in needed services and identifying preferences for services and how they are provided.

ICS was also established to further develop and broaden the impact of the "good jobs/good care" model of paraprofessional home care developed by Cooperative Home Care Associates (CHCA) one of its co-sponsors. ICS will provide a unique opportunity for CHCA to grow to a 1,000-person agency within the next five years.

 

BACKGROUND

Independence Care System, Inc. (ICS) is a 501(c)(3) nonprofit subsidiary of the Paraprofessional Healthcare Institute (PHI). The Institute is a ten-year-old independent 501(c)(3) nonprofit organization affiliated with Cooperative Home Care Associates (CHCA), a sixteen-year-old worker-owned home health care agency employing approximately 600 African-American and Latina women as home care aides in the Bronx and Harlem. Approximately 70 percent of CHCA's workforce was dependent on public assistance before being trained and employed by CHCA; the majority are single mothers of young children.

Cooperative Home Care Associates is widely recognized as a model for providing both high-quality paraprofessional home care jobs and high-quality services to its elderly and disabled 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, and the "1997 Corporate Conscience Award" for employee relations from The Council on Economic Priorities.

In 1991, CHCA sponsored the creation of the Paraprofessional Healthcare Institute (PHI), a 501(c)(3) nonprofit organization to develop new programs and conduct policy analysis consistent with CHCA's "Quality Jobs/Quality Care" mission. PHI was commissioned by the United Hospital Fund in 1994 to articulate this approach in a monograph, "Better Jobs, Better Care: Improving the Health Care Workforce."

PHI and CHCA are now sponsoring the creation of ICS to develop a coordinated system of care for adults with disabilities in New York City. ICS and CHCA combined have the potential for becoming major actors in New York City's long-term care industry. ICS will be highly visible as the payor and coordinator of care for a physically disabled and chronically ill population throughout four of the five boroughs of New York City. CHCA will be a major, integral component of its system of care.

 

GOAL AND OBJECTIVES

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

We are the first managed long-term care program in New York State to focus on the needs of the physically disabled. We are also unique in our dual focus on: 1) emphasizing the full participation of disabled consumers in the care planning and management of their own health and social supports; and 2) developing a tailored system of medical and social care for each member, based on the member's preferences and their choice of provider--from physicians to home care aides. This focus, and the values embedded in it, is particularly important to consumers and disability rights advocates.

The development of ICS is especially significant in the context of the Supreme Court's decision in 1999 in Olmstead v. L.C. This decision ruled that the Americans with Disabilities Act prohibits the unnecessary/inappropriate institutionalization of individuals with disabilities in long-term medical facilities. As a result of this decision, the Federal Department of Health and Human Services has recently given guidance to the state explaining new regulations extending Medicaid coverage to more people with disabilities and on how they can apply for grants to improve their long-term care systems and to assist individuals transitioning from institutional to community-based care settings.

Many states, like New York, see managed long-term care organizations as the most desirable type of intermediary organization to be accountable for providing community-based care using Medicaid funds. Yet, state are also confronted with the dilemma that the existing models for managed long-term care, like the PACE program, are designed for an elderly population and not the physically disabled.

There is a clear need for a new model, like ICS, which becomes the mechanism for accountability for: addressing the medical and social needs of the disabled by building on the strengths of the current health and social service system and strengthening existing or developing new services where necessary; respecting and embracing the core values and beliefs of the disabled rights movement; containing overall costs over time; and operating at sufficient scale to service a substantial portion of adults with physical disabilities.

ICS has been developing such a model and we are seeking to be at the forefront of efforts nationally to serve people with disabilities appropriately in the community.

 

DESCRIPTION OF NEED

ICS serves Medicaid recipients with significant physical disability or chronic illness who are eligible for placement in a nursing home level of care. This population primarily consists of younger adults with significant disabilities typically due to severe trauma and/or injury or degenerative neurological and muscular diseases. There are approximately 18,000 eligible people in New York City.

People with disabilities want to remain at home for as long as possible, to be supported by family, friends and familiar service providers. Severely disabled individuals are exclusively neither acutely nor chronically ill. Instead, their conditions tend to be long-term, often degenerative, with episodic flare-ups 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 specific needs--care that is delivered in a coordinated, "seamless" manner and that blends both medical and social 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.

Adults with significant physical disabilities are often viewed as "problem consumers" in the fee-for-service health care system. Most health care providers--from physicians to home care aides--have little training or knowledge about their disabilities. Their conditions are rarely clinically monitored because they typically receive home care services through the largely custodial personal care/home attendant programs and they often do not have primary care physicians if they are Medicaid beneficiaries.

Instead of primary care providers they tend to rely on the specialty clinics of academic medical centers. These clinics are staffed by medical residents who rotate every six months. As a result, there is no continuity of care or building of knowledge about the consumer/patient over time and often inappropriate referrals are made to other clinicians in the process.

Virtually unattended, adults with disabilities are more vulnerable to acute health problems such as decubitus ulcers, fractured bones, contractures, urinary tract infections, respiratory tract infections and deep vein thrombosis. These problems become serious quickly, often resulting in unscheduled hospitalizations and secondary disabilities and limitations.

Paraprofessional home care is widely regarded by many disabled individuals as their "lifeline" or primary support. 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, paraprofessionals are rarely respected, trained or communicated with in a way that recognizes their value.

Further, the mobility needs of disabled adults are virtually ignored in this system. Customized fittings for wheelchairs, for example, are typically done by the durable medical equipment provider in a hospital setting without ever visiting the consumer's home to make sure the chair fits through doors, elevators and hallways. Motorized wheelchairs require routine maintenance and minor repairs but it is extremely difficult to find reliable service providers and to get Medicaid or Medicare to pay for it.

Consumers are typically unable to identify a transportation company which consistently arrives on a timely basis, is appropriately equipped with safety equipment for a variety of wheelchairs and has experienced, sensitive drivers. A single trip will often take an entire day to complete. Yet, access to health and social services for many people with significant disabilities depends on both an adequate wheelchair and regular transportation.

Finally, people with disabilities have limited opportunities for participation in community life--e.g., employment, recreation and sports activities. This is, in part, due to lack of transportation and, in part, a lack of suitable options.

 

PROGRAM DESCRIPTION

Independence Care System began operation in April, 2000 and has approximately 150 members as of March, 2001. We intend to enroll approximately 300 people a year for the next three years.

ICS serves Medicaid--eligible individuals over 21 years of age with significant physical disability or chronic illness who reside in the Bronx and Manhattan in New York City. We will expand to Brooklyn and Queens in New York City over the next three years. The target population primarily consists of younger adults with disabilities due to severe trauma and/or injury and degenerative neurological and muscular disease--e.g., spinal cord injury, multiple sclerosis, cerebral palsy and muscular dystrophy.

Independence Care's program has five key elements:

  1. Consumer Participation

    We are building a new framework for balancing provider and consumer perspectives that emphasizes the full participation of the consumer in care planning and the management of their own health and social supports. The emphasis is on building on their individual strengths and what they can do for themselves in conjunction with identifying their preferences for various services and how they are provided.

  2. Interdisciplinary Care Management

    The member is part of an interdisciplinary care management team led by a nurse and a social worker. The focus is on coordination of services and identifying gaps in needed services. We must coordinate care over time, with multiple providers, and across primary, acute and long-term care settings.

  3. Comprehensive Services

    We offer a comprehensive range of services and supports that consumer's value. This includes: consumer-directed paraprofessional care; wheelchair repair and maintenance; transportation to medical and social activities; and support groups. We must not only make these services widely available but also allow maximum flexibility in their use.

  4. Focus on Mobility Needs

    Our focus on the member's mobility needs ranges from accessibility surveys of site-based providers to providing wheelchair repair and maintenance services. As a large purchaser of transportation services we will require timely and responsive services. We will also provide specialized support for fitting motorized wheelchairs.

  5. Build Knowledge and Skills

    We must continuously build knowledge and skills among our providers, our staff and our members about the disabling conditions they are working with and how to effectively work with each other. Training for providers and for consumers must be an ongoing process.

ICS coordinates a wide range of primary, acute and long-term health care providers. The service network builds on the City's existing system of services for the physically disabled. The challenge is to develop a core group of key providers over time, while at the same time, supporting a very broad network. Consumer choice is embedded in ICS' philosophy of supporting consumer-members as the primary managers of their own care. Choices extend to all providers, especially paraprofessionals, and not just to physicians.

We currently offer a benefit plan that includes: care management, home health care, personal care, adult day health care, 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 are currently excluded from the capitation arrangement; however, all care is coordinated by ICS. Providers bill Medicare directly for Medicare-covered services.

We pay particular attention to five areas: physician services; paraprofessional home care; durable medical equipment; transportation; and fostering opportunities for participation in community life.

ICS is continuously seeking to identify and develop relationships with a sufficient number of physicians who are in accessible settings, knowledgeable about the medical needs and expectations of ICS' members, sensitive in their interactions, and committed to a collaborative, interdisciplinary approach--and will see people, by appointment, at Medicaid rates. We expect these physicians to be able to obtain consultation from other physicians/specialists as required without referring ICS members to clinics. We also will establish simple administrative procedures for transferring useful information, ongoing communication and billing for payment.

ICS is also working to develop a more highly skilled paraprofessional workforce as a critical member of the health care team, not as an appendage. We need home care aides who are: skilled, reliable workers; able to accommodate a wide range of needs from going to school or work to dependence on a ventilator; able to report changes in conditions/compliance with prescribed regimens especially when a person can not see himself or herself; and able to establish good relationships with nurses and social workers who are part of the care team. Members will also choose the organizational form of paraprofessional care they want--i.e., provided by an agency such as Cooperative Home Care Associates, or consumer-directed, such as Concepts of Independence which acts as a fiscal intermediary for personal assistants hired and supervised by consumers.

ICS provides specialized support for fitting motorized wheelchairs. We have also initiated our own wheelchair repair and maintenance service. Initially, we are focusing on using our purchasing power to obtain adequate transportation services but expect that we will need to provide some portion of our transportation needs directly by the third year of operations.

ICS is also working to develop more options for participation in community life for its members. The current options rage from advocacy activities regarding public transportation, trips to recreation or entertainment or sports events, and participation in athletic teams. We are also seeking to arrange for our members to purchase personal computers and be connected to our Website and with each other.

Another potential mechanism for social participation is to create community social centers. Such centers could be informal, safe places where people with disabilities could spend time as they wish. The centers could have some or all of the following functions; café; meeting space; resource library access to computers; educational classes; ICS member training; and support groups.

Finally, ICS is committed to building knowledge and skills among members, staff and providers about the disabling conditions they are dealing with and how to work with each other. We will establish a training institute that will offer a variety of courses or sessions in different community-based locations--e.g., independent living centers, churches, settlement houses. ICS members, staff and providers will serve as instructors.

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 provides the basis for long-term organizational development. This is the philosophy that has driven the development of Cooperative Home Care Associates and PHI for the last 16 years.

 

ORGANIZATIONAL STRUCTURE

The ICS governance structure reflects the broad-based nature of our program. ICS is sponsored jointly by Cooperative Home care Associates (CHCA), a 600-person worker owned home care agency, and the Paraprofessional Healthcare Institute (PHI), a nonprofit affiliate of CHCA. The Presidents of CHCA and PHI represent ICS' co-sponsors. There are two consumer advocates on the Board, which currently consists of the Director of Health Policy Access for Gay Men's Health Crisis and the director of an independent living center. There are three At-Large or public positions which currently consists of a local general manager of Physicians Health Services, a large health maintenance organization; the Vice President for Policy of the United Hospital Fund; and a representative of the NYC Investment Fund, a major financial supporter. The President of ICS is also a Board member.

A Consumer Council consisting of ICS members and representatives of advocacy organizations for people with disabilities has also been established. A Director of Advocacy/Ombudsperson, who is a full-time staff person and a recognized leader in the disabled community, helps facilitate and ensure that consumers have a real and effective voice in the organization.

The senior management team consists of the following:

President
Director of Operations
Chief Financial Officer
Director of Care Management
Medical Director
Director of Clinical Services
Director of Advocacy
Director of Community Outreach
Rick Surpin
Frances Sadler
Jan Saglio
Ann Wyatt
Dr. Peter Connolly
Eileen Hanley
Marilyn Saviola
Portia McCormack

The team has extensive experience in: design and management of long-term care programs and specialized programs (including people with AIDS and hospice care); traditional and specialized managed care organizations; and business development and finance.

 

FUNDING AND BUDGET

Planning support for ICS totaled approximately $1.5 million and was obtained through grants from the Altman Foundation, the Ford Foundation, the Robert Wood Johnson Foundation, the Charles Stewart Mott Foundation, New York Community Trust, The Pfizer Foundation, the United Hospital Fund and the Public Welfare Foundation.

Start-up financing to date has been obtained through a combination of $2.3 million in grants and $3.75 million in medium and long-term debt. Grants have been obtained from the following sources: the Ford Foundation; the F.B. Heron Foundation; the Charles Stewart Mott Foundation; the Fan Fox and Leslie R. Samuels Foundation; New York Community Trust; and an Anonymous Foundation; United Hospital Fund, and the California Wellness Foundation.

The medium and long-term debt has been obtained from the following sources:

New York City Investment Fund
      5 year term loan
$1.8 million
The Ford Foundation
      10 year program-related investment
$1.2 million
Nonprofit Facilities Fund
      5 year loan for renovations
$600,000
National Cooperative Bank
      5 year term loan
$150,000

The debt is used for working capital and for meeting the State's loss reserve requirements.

SUMMARY

Independence Care System will succeed if we are able to build trusting relationships with our members and providers, foster collaborative working relationships which are truly interdisciplinary and enable real participation and choices for members in care planning and management. We must do this in the context of addressing the basic problems that people with physical disabilities face everyday. It is an organizational mission which is simultaneously daunting in its complexity and essential because there is no other organization that we know of that is prepared to undertake these challenges.

This paper available from Independence Care System, 257 Park Avenue South, Second Floor, New York, NY 10010-7304, Tel: 212-584-2500, Fax: 212-584-2555, E-mail: info@icsny.org, Web site: www.icsny.org