September 2000

Grant Results

National Program

Partners in Caregiving: The Dementia Services Program


From 1993 to 1996, staff at the start-up MS Achievement Center at the Park — a multiple sclerosis (MS) day center in Rochester, N.Y. — replicated a program based on the country's only existing MS-specific day center, the MS Achievement Center of Minnesota, which had reported the benefit of peer counseling and support for persons severely affected with MS.

The project was part of the Robert Wood Johnson Foundation (RWJF) Partners in Caregiving: The Dementia Services Program national program.

Key Results

  • The center officially opened in June 1993. The center's initial enrollment was 25, and average daily attendance, 11. Eight-five percent of its clients needed total care — i.e., care provided by two nurse's assistants, including feeding.

RWJF's funding of the national program office of Partners in Caregiving supported the technical assistance provided to this site.

 See Grant Detail & Contact Information
 Back to the Table of Contents


In 1993, Park Ridge Health System (PRHS) of Rochester, N.Y., offered comprehensive health care in the Rochester area. Its facilities included an acute care hospital, labs, a mental health program, two nursing homes, an assisted living program, a long-term home health care service, and an existing adult day center.

The center, which opened its doors in June 1993, came about as a collaboration between PRHS and the Rochester Chapter of the National Multiple Sclerosis Society, Rochester Area Multiple Sclerosis (RAMS). It was viewed as an opportunity to target a limited and well-defined population of approximately 1,100 adults with MS and related neurological disorders in the greater Rochester area, and to provide them with services not previously available there.

At the time, only one other adult day center in the nation, in Minneapolis, Minn., served an MS-specific population. However, the Rochester center's clientele were to be more narrowly defined than the Minneapolis center's — specifically young to middle aged individuals with severe MS or related neurological disorders. A long-term goal of the center was to demonstrate, if possible, that cost-effective preventive-oriented services within a day care setting could delay or reduce premature nursing home placement.

Several Rochester adult day health programs surveyed prior to 1993 gave anecdotal evidence that they did not admit applicants with MS because they could not meet the need of such applicants for intense psychosocial counseling, specialized physical care, and rehabilitation. In addition, applicants with MS did not often fit the existing day care groupings in term of age and developmental level.

A survey of Rochester MS sufferers at about this time also determined that existing MS programs did not deal with MS-related fatigue or cognitive deficiencies, nor did they attempt to prevent complications of MS. Further, age-specific needs and other life crises, particularly the emotional consequences of having a chronic, progressive, debilitating illness, were seldom addressed.

In dealing with these issues, the proposed center leaned heavily on an evaluation of the only existing MS-specific day center, the MS Achievement Center of Minnesota, which had reported the benefit of peer counseling and support for persons severely affected with MS. Plans proposed for the Rochester center included regular reevaluation via client and caregiver interviews to test the center's success in all regards.

 Back to the Table of Contents


The center officially opened in June 1993. Its association with the Partners in Caregiving (PIC) program spanned the period April 1993 to July 1996. The center used technical assistance from PIC primarily to assist it in modeling itself on the one other established MS center, the MS Achievement Center of Minnesota, which had been operating in Minneapolis, Minn., since 1990.

The center's facilities included ample space for wheelchairs and motorized scooters, a rest area for fatigued individuals, complete occupational and physical therapy areas, a kitchen, and full bathroom facilities including a roll-in shower. Open 8 a.m. to 5:30 p.m. weekdays, its initial enrollment was 25, and average daily attendance, 11; 85 percent of its clients needed total care — that is care provided by two nurse's assistants, including feeding.

At the center, a social worker case-managed clients, working with family caregivers and community agencies to reduce absenteeism and track referrals, while coordinating each client's treatment. The University of Rochester's Department of Neurology provided initial orientation and ongoing training of staff, as well as medical consultation.

In accordance with New York State law, the daily fee included the following day services: nursing, personal care, physical, occupational, and speech therapy, psychiatric counseling, nutrition counseling, and assistance with ADLs (Activities of Daily Living: bathing, grooming, toileting, mobility). The center provided breakfast and lunch, and volunteers from a local beauty school offered hair and nail services once a month. Ancillary services, billed to clients by providers, included regular psychiatric therapy, podiatry, dental care, and all lab work.

The center provided transportation, which most clients used. This service, through a local carrier, was a highly flexible door-to-door service, essential to meet the mobility limitations imposed by MS. Startup plans called for periodic field trips to parks and shopping centers for clients (called members to foster a club-like atmosphere). A unique feature of the center's program was its recognition and treatment of cognitive deficits, depression, and other emotional reactions to chronic illness.

In 1993, the center estimated its daily costs per client to be $85 (including a hefty $36 unbilled cost for transportation), and this is what the center charged Medicaid-eligible clients who also used its transportation. The comparable rate for private-pay clients was set at $87. Some other funding came from the Davenport-Hatch Foundation of Rochester ($20,000), and the Freedom Forum of Arlington, VA ($5,000).

Staffing to meet client needs. The center staff found that its clients were more functionally dependent than they had anticipated and therefore required more assistance. Staff was in short supply from the beginning. Dealing with staff turnover and finding replacements, and adjusting staff hours, was a constant challenge extending beyond the startup period. The center made the following adjustments in order to accommodate functionally dependent clients and deal with staffing problems:

  • It terminated a group exercise program in favor of individual physical therapy (PT) sessions. The center did not have staff to both provide one-on-one assistance to clients during group exercise and also provide for clients not participating in these sessions.
  • To make the one-on-one PT sessions possible for all clients, a therapy aide — hours were increased to full-time. Feedback from clients indicated that they strongly favored one-on-one PT over group sessions.
  • It began a small group for fine motor exercise. The group began meeting daily in January 1996. Here, efficiency resulted because the members of the group did not require one-on-one assistance.
  • The center rearranged hours of its part-time staffers to match the period of heaviest client need. As clients became more comfortable with the program and staff, their requests for personal care typically increased; thus, for example, a part-time certified nursing assistant was hired to work peak hours from 11 a.m. to 3 p.m. every day.
  • Similarly the center hired a recreation assistant to meet the needs of most clients who preferred no "down time," but a full scope of activities during their day.
  • After two years, the center decided to limit its staff time for providing showers. Community agencies giving home care for the center's clients had come to rely on the center for needed showers in order to focus on more pressing client needs at home. The center continued showers for those clients who lacked an accessible shower at home, or no personal care assistance there. Under the policy, staff gave about three showers daily — primarily to its heaviest clients requiring two assistants and a mechanical lift.
  • In early 1994, the center switched from meals-on-wheels (TV-dinner type) lunches, which clients generally despised, to ones prepared at the center family-style. While this created work for staff and required some added kitchen equipment, the change was judged extremely beneficial to client morale.
  • In 1994, the center initiated a "mental exercise" group for its clients. This encouraged group discussion of current events and selected topics.
  • In 1996, the center organized support groups for clients and their families.

MS care can be demanding. A significant ongoing issue for the center in serving its client population was their high one-on-one and even two-on-one need for assistance for most program activities — from recreation to eating to toileting. The center also found that its client population was demanding. They wanted no activity downtime and more personal care assistance as they became more comfortable with staff. They also wanted daily evidence that they benefited more from a day spent at the center than a day spent at home.

In dealing with these and other issues, staff consulted frequently with — and went on one site visit to — the MS-specific center in Minneapolis. At the Rochester center, staff worked carefully with clients to attempt to reach an understanding of what each client wanted and could realistically expect to get out of the center's programs, and how best to achieve it.

Marketing to referral sources. Initially, many of the program's referrals came through Rochester Area Multiple Sclerosis (RAMS). Subsequently however, the center broadened its marketing efforts beyond RAMS because it became evident that a significant portion of Rochester's MS population was unknown to RAMS. With help from PIC, the center began to seek referrals from other community-based agencies working with MS clients.

It maintained close contacts with RAMS and other community-based agencies to increase the number of referrals to the program. Little traditional marketing — advertising, mailings, or events-based promotions — was needed. The center, however, did hold an open house and an official ribbon-cutting ceremony to celebrate its opening in 1993. The center built capacity attendance within 24 very busy start-up months through referrals from other agencies.

Overbooking to optimize staff efforts. From its opening, inquiries about the center and its enrollments grew rapidly. By mid 1994, average daily attendance reached 92 percent to 98 percent of center capacity, and by 1995 the center had a daily waiting list. To optimize staff efforts, the center applied for and received permission from the New York State Department of Health to increase the number of daily slots from 20 to 24.

While the center still planned to serve 20 people daily, it booked 24, and this effectively compensated for absenteeism. Aiming for a maximum (and regular) attendance also appeared to have a salutary effect on clients. Absenteeism rates dropped gradually, as clients and staff, according to the project director, began forming a family-like relationship.

Potential State Medicaid reimbursement problems. Medicaid reimbursement was an issue throughout the project period as New York State explored cutting reimbursement levels in half. Fortunately the planned-for cuts, which would have devastated the center's finances, did not materialize. In fact, Medicaid and other government revenues almost tripled during the period 1993–1996 (as attendance grew), which largely accounted for the center's move from an opening deficit of 22 percent to a 6.8 percent surplus of net operating revenue over total cash expense by the end of the project period. Yearly expenses per client first climbed to $23,600 (1995), then stabilized at $20,500.


The communications effort is described in the preceding section on marketing.

 Back to the Table of Contents


With the anticipated 1997 merger of its parent organization, Park Ridge Health System, into another area health system, the center began exploring referral possibilities within the new health system. The center expected to maintain an attendance above 90 percent capacity, and to continue to adapt its operations to the needs of its young to middle-aged MS clientele.

 Back to the Table of Contents



Park Ridge Health System: Partners in Caregiving


Park Ridge Health System - MS Achievement Center at the Park (Rochester,  NY)

  • Amount: $ 0
    Dates: April 1993 to July 1996


Sally Radell, R.N.
(716) 429-1300

 Back to the Table of Contents

Site received technical assistance only.
Assistance provided April 1993 to July 1996.

Report prepared by: Rona Smyth Henry
Report prepared by: Nancy J. Cox
Report prepared by: Burton V. Reifler
Report prepared by: Carolyn Asbury
Report prepared by: Karin Gillespie
Reviewed by: James Wood
Reviewed by: Molly McKaughan
Program Officer: Rosemary Gibson
Program Officer: Rona Smyth Henry

Most Requested