Program Profile

Impact Feature Issue on Enhancing Quality and Coordination of Health Care for Persons with Chronic Illness and/or Disabilities

Meeting Social Service and Health Care Needs in NYC: Independence Care System


Rick Surpin is President of Independence Care System, New York City.

Independence Care System (ICS) is a nonprofit, Medicaid managed long-term care plan serving adults with physical disabilities in New York City. Through coordinating and providing a wide range of health and social services, ICS allows many New Yorkers with disabilities to live independently in their own homes.

In New York City, as in many places, adults with physical disabilities have limited access to appropriate and effective health care and social services. Viewed as “problem consumers” who take up too much time and have unusual problems that are not easily addressed, many of their basic needs are virtually ignored by the system. ICS’ mission is to turn the prevailing approach on its head and build a system designed to meet the social service and health care needs of adults with disabilities, a system based on their determination of their own needs and active participation in managing their own care.

ICS is jointly sponsored by the Paraprofessional Healthcare Institute (PHI) and Cooperative Home Care Associates (CHCA). PHI is a national nonprofit organization that conducts policy research and advocacy related to creating high quality jobs for paraprofessionals in long-term care. CHCA is a worker-owned home care agency that is widely recognized as a model for providing both high quality home care paraprofessional jobs and high quality services to persons with disabilities and seniors.

ICS began operation in 2000, and today has approximately 650 members. Members must be at least 21 years old, eligible for Medicaid and for placement in a nursing home. Most are Latino or African-American (90%), women (60%), and under 65 years of age (90%), and 50% are dually eligible for Medicare and Medicaid. Their disabilities are primarily due to severe injury or degenerative neurological and muscular diseases.

The ICS Program Model

ICS is paid by Medicaid for the following set of services:

  • Care coordination. Coordination and management of all member health and social service needs, including physician and hospital services.
  • Home care aide services, including home health aides, personal care aides, home attendants, and personal assistants.
  • Home health nursing; physical, occupational, and speech therapies.
  • Nutrition services.
  • Home delivery of meals.
  • Medical equipment and supplies, including prosthetics and orthotics.
  • Transportation (non-emergency).
  • Prescription and non-prescription drugs, if ordered by a physician.
  • Respiratory therapy.
  • Dental care.
  • Optometry, including eye exams, glasses, and other vision services.
  • Audiology and hearing aid services and equipment.
  • Adult day health care.
  • Social day care.
  • Social and environmental supports, including respite, chore/housekeeping services, and home modifications.
  • Personal emergency response system.
  • Site-based rehabilitation services, including physical, speech, and occupational therapies.
  • Nursing home care.

The services are covered through fixed, or “capitated,” monthly payments for each member. This payment system allows us to provide some services that are not available in fee-for-service, such as care coordination, and make more flexible service arrangements than is possible in fee-for-service. Inpatient and outpatient hospital services are billed to Medicaid fee-for-service. All Medicare services for the dually eligible are billed directly.

Our program model is based on three fundamental premises:

  • People with disabilities need medical services episodically while their daily living needs are primarily social. They need a service system which blends the social and medical models of care.
  • Each individual with disabilities has unique needs and preferences, which must be recognized and addressed. What is most valuable to one person will probably not be the same for another. We need to enable each individual to get what they consider valuable as much as possible.
  • People with disabilities typically know a great deal about their bodies and their needs. They often can take the lead role in planning and managing their own health care and social supports. They need knowledgeable people to collaborate with them in making the system work for them.

The core of our approach is an interdisciplinary care management process with either a nurse or social worker serving as the primary care manager. The care manager is responsible for working with the members to coordinate their overall care and identify gaps in needed services. An individualized plan of care is developed with each member soon after enrollment based on their priorities and their choices about their providers. The plan is reviewed every four months and re-done annually. ICS also has an advocacy department, led by a disability rights activist, that forms a special bridge to members and advocates both within and outside the organization for their needs.

Evolution of the Program Model

We have been developing an expanded framework, beyond the care management process, for managing all of the health care and support services that we provide/coordinate. There are five program areas that our members consider valuable and in which we have developed distinctive skills and knowledge. Each of these areas combines care management functions and direct services. Together, they represent a significant portion of our medical expenses and foundation building blocks for ICS’ approach for addressing the long-term care and support needs of adults with physical disabilities. They are as follows:

  • Pressure Ulcer Prevention and Intervention Program. Approximately 40% of our members have been determined to be at moderate to high risk for developing pressure ulcers. The Braden Scale for Predicting Ulcer Risk is a regular component of the nursing assessment completed upon enrollment in ICS and every 120 days. Nurse care managers, in consultation with the program director, develop appropriate interventions for each individual at moderate-high risk.
  • ICS Wheelchair Purchase and Repair Service Program. Approximately 70% of ICS’ members rely on some type of wheeled mobility device – manual wheelchair, powerchair or scooter – for their primary means of mobility. A physical therapist who is specialized in seating and mobility services is available to members who are in need of new equipment. The therapist assesses joint flexibility, sitting balance, skin conditions, and functional mobility skills; the member articulates previous experiences with mobility products, and their intended use for the new equipment. A wheelchair repair technician visits members in their homes to repair chairs as needed, and members also have access to maintenance training and a workshop to perform preventive maintenance.
  • Home Care Aide Services Program. Approximately 80% of our members use home care aide services (not including Consumer-Directed Personal Assistance Services) as the primary support. They are also the link between members/family caregivers and professional service providers. The program consists of a general orientation for all aides that provides information about the member’s condition and goals to enable them to be active participants in supporting the member’s needs and interests. We also provide problem-solving assistance when members are unable to obtain stable home care aide services.
  • Consumer-Directed Personal Assistance Services. Approximately 20% of our members use consumer-directed personal assistance services in which they hire and supervise their own personal assistants through a contracted agency. We are currently planning a program that will provide additional support services as of mid-2005. It will include consumer training on the role and responsibilities of consumers in terms of recruiting, hiring and supervising their personal assistants; personal assistant training on the role and responsibilities of the assistant; and a central registry of personal assistants to aid consumers and assistants in connecting with each other.
  • Social Activities Program. Adults with physical disabilities have very limited opportunities for social participation and recreation. We are now planning a social activities program for implementation in mid-2005 with the following components: a cafe setting at our office providing an informal meeting space; organized activities including support groups (men, women, weight management) and affinity groups (writers, movie lovers); classes in ESL/GED, computer skills, painting, and woodwork; and social events.

The ICS Organizational Model

The care management process and the programs described above are meant to offer services that create unique value for our members and contain costs over time, especially by reducing the frequency and duration of hospitalizations. Part of the unique value is also connection to a community of people – other members, our staff, our key providers. We are committed to developing processes and systems that support collaborative relationships among members and with ICS staff and providers. This requires giving members a real “voice” in operations through satisfaction surveys, group meetings, and a member council. It requires taking responsibility for all of the services we coordinate as if we provided them all ourselves. And it requires creating social opportunities for members and staff to get to know one another.

What is the connection between community and care coordination? Connectedness and hope are healthy antidotes to isolation and depression. Discussions about choices and trade-offs are more frequent and honest when people feel “known” by each other and respected. When people feel they not only have a good experience with the organization but are treated as major stakeholders, they will be prepared to balance cost and service issues as if they are spending their own money and not someone else’s.