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There are approximately 400,000 people in the United States with multiple sclerosis, and another 200 are diagnosed every week. These people live with the threat of a disabling disease that slowly robs them of their independence by chipping away at ambulation, sight, bowel and bladder function, and their ability to make lifestyle decisions based solely on their own desires.

Independence day
Independence Care System, New York, N.Y., is a nonprofit organization committed to helping people with disabilities to live independently. ICS offers long-term services targeted in general to 18- to 65-year-olds who may find their life plans derailed by disabling illness or injury. The community-based program focuses on keeping people in their homes. This "bloom where you are planted" mission involves offering services to "members" who have a wide variety of problems. Services must be tailored to each one's particular situation.

Rachael Stacom, ANP, director of Specialized Care Management for ICS, implemented its mission to help those with disabilities to live independently by creating a specialized MS program. This ICS program has recently been named a "Center for the Promotion of Excellence in Long-Term Care" by the National Multiple Sclerosis Society in recognition of its leadership role in programming, staff training, research, and advocacy.

"Because of the nature of the illness, our members with MS continue to change and develop new needs," she says. "These members account for about 36% of our hospital admissions because of the nature of the disease. They have problems with falls, urinary tract infections, and wounds like pressure ulcers."

One of the mainstays of the program is the case manager, who may be a nurse or a social worker, depending on the needs of the patient. The case manager assesses the member for medical and social needs and plans the level of assistance best suited to the situation. A nurse always visits the patient to assess for physical needs, however, and makes regular visits thereafter. Personal care attendants, durable medical equipment, and skilled therapies also are all part of the available mix.

There's no place like home
The MS program focuses on responding to the needs of the member as they change during the course of the disease as well as responding to the fear that is engendered by the diagnosis. The member soon realizes that the diagnosis — although certainly challenging — is not a life sentence in an institution.

Nurses play an important role in managing the care of the member. At the minimum, a nurse visits the member every three months to assess the home situation and to follow up on any new problems that may arise. MS is not a static disease, and symptoms come and go at irregular intervals and with irregular intensity. Nurses are uniquely prepared to look at the whole patient and to intervene in a timely way to head off problems.

Urinary tract infections and falls are the two primary reasons for hospitalization of these patients. By diagnosing the problem early and instituting home-based interventions, a hospital stay can often be avoided. The early diagnosis and treatment for problems like neurogenic bladder (the genesis of the frequent urinary tract infections that can plague these members) is an example of a strategy for preventing hospitalizations.

There is more than medical intervention involved to keep these folks independent.

Physical therapy and appropriate equipment help to promote safe activity and prevent falls. For example, a tub transfer bench can make the difference between having a shower and a sponge bath. A rocker knife and a plate guard can make mealtimes enjoyable again. Transportation services open the door to getting out and about in the community to avoid the isolation so common for folks with disabilities.

The care provided by home attendants cannot be underrated. Offering assistance with activities of daily living, as well as being an important primary relationship to otherwise isolated individuals, they are trained to make observations and to report potential problems to the case manager.

MS does not progress in an orderly way. Today, the member has tremors, tomorrow the tremors are better but he or she cannot walk. The disabilities are frightening and daunting. Having the ICS team on the member's side helps to organize life so that independence can be maintained.

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Marylisa Kinsley, RN, BSN, is a contributing writer for Nursing Spectrum.

To comment, e-mail editorNY@nursingspectrum.com.
For more information on ICS, visit http://www.icsny.org/.

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