Susan Hedrick, PhD; Anne Sales, MSN, PhD; Jean Sullivan, BA; Shelly Gray PharmD, MS;
Jane Tornature, PhD; Michael Curtis, PhD; Xiao-Hua Andrew Zhou, PhD
The John A. Hartford Foundation, Inc., of New York City and the Health Services Research and Development Service of the Department of Veterans Affairs supported this research.
Community residential care is attracting increasing interest because of its potential to provide cost-effective services to people in need of long-term care while preserving their independence in a more home-like environment. This type of care includes adult family homes (AFH), adult residential care (ARC), and assisted living (AL). Most states now cover these programs through Medicaid. Washington state is a leader in this field and has worked to increase the availability and quality of these programs. A group of researchers at the Center for Outcomes Research in Older Adults at the VA Puget Sound Health Care System and University of Washington took an opportunity to study these programs and provide information on 1) the characteristics of people entering or newly receiving state funding in these programs, 2) outcomes of care including location, survival, and health status for all residents 12 months after enrollment and 3) the care settings. The John A. Hartford Foundation, Inc., of New York City and the Health Services Research and Development Service of the Department of Veterans Affairs supported this research.
All persons entering an adult family home, adult residential care, or assisted living setting in a three-county area between April and December 1998 on Medicaid funding were approached about study participation. We enrolled 349 residents in 219 settings, 86% of those eligible for and contacted by the study. We were also able to follow the residents over a 12- month period, with only 18 residents lost to follow-up or refusing. We also enrolled 243 family caregivers, 184 administrative providers (owners or managers) for the settings in which the residents were placed, and 115 direct care providers. We collected data from state databases; in-person interviews with residents, providers, and informal caregivers at study enrollment and 12 months later; and a questionnaire completed by the administrative providers.
Adult family homes (AFH) in Washington State are residential homes licensed to provide room, board and assistance with personal care tasks for 2 to 6 residents not related to the owner/operator. Adult residential care settings (ARC) provide room, board, and personal care services in licensed boarding homes. The settings in our study had from 12 to 105 licensed beds. Assisted living (AL) settings are the most recently developed type of service, with a stated philosophy of maximizing the independence and self-esteem of clients. Assisted living settings must meet physical plant requirements, including providing an individual private apartment with a full private bathroom, a lockable door, and a mini-kitchen. The settings in our study had from 12 to 206 licensed beds.
Resident Characteristics at Enrollment
Women were the majority in all facilities (68%); adult residential care settings had a significantly lower proportion of women than assisted living settings (55% vs. 78%). Most residents had at least a high school degree, though adult residential care settings had significantly fewer high school graduates than adult family homes. Few residents were currently married. The majority of residents were white. The average resident was 78 years old, but these settings served residents between 25 and 102 years old. ALs served the oldest population and adult residential care settings the youngest (average age 83 vs. 69). Most residents (75%) were in a private home prior to enrollment, while 7% were in a nursing home.
Residents reported receiving help with a wide range of activities of daily living (ADLs; bathing, dressing, toileting, transfer, locomotion, and eating.) (Table 1).
Table 1: Percentage of community residential
care residents receiving help with ADLs
Adult family home residents reported receiving help with significantly more activities than residents in other setting types (Table 2).
Table 2: Percentage of community residential
care residents receiving help with ADLs by
type of facility
The majority of residents (63%) had indicators of cognitive impairment, highest for adult family home (74%). More than half (58%) of residents reported complete or almost complete control over the decision to move to this setting. Residents reported a wide range of factors as important to them in making their decision, including clean and pleasant surroundings, quality of care or staff, location, availability of personal assistance, home-like character, compatibility/familiarity with setting, and privacy.
Satisfaction with Care
Almost all residents (92%) reported that moving to the setting was a good decision. They were very satisfied with the care overall. For example, 75% of residents reported staff always treat them with respect. Adult residential care residents were significantly less likely to report satisfaction with the decision to move, the setting overall, the food, and respectful treatment from staff. Assisted living residents were significantly more satisfied with respectful treatment from staff and their apartment/room, possibly indicating the influence of the stated assisted living philosophy of autonomy and privacy, and the required physical layout of separate apartments with lockable doors and kitchenettes. Half of the residents reported that their settings were very home-like, with adult family homes reported to be significantly more home-like than adult residential care settings. Comments volunteered by residents reflect the complexity of the issue of satisfaction with care in these settings:
Resident Characteristics At Follow-Up
Of the 349 residents, 61% were still in their original setting (or passed away in that setting) at the end of the 12-month follow-up period. A total of 78% of residents survived to follow-up, with no difference across setting type. Residents in the three types of settings, in analyses that controlled for differences at enrollment, were remarkably similar at the 12-month follow-up period. There is thus no strong evidence from the outcomes in this study for health status advantages or disadvantages from placement in a particular type of setting. Choices among type of setting could be based on the match of needs to individual preferences for the setting characteristics such as location, size, amenities such as private rooms, or home-like character.
Adult family home providers report policies that allowed admitting residents with more potentially difficult health and behavior conditions than adult residential care or assisted living settings. Adult family home providers also report more restrictive policies on allowable behaviors such as drinking alcohol, locking room doors, and a set time for a curfew, lights out, and bathing. Most providers described residents with dementia and behavior problems as the most difficult to care for and reported interest in additional training in how to care for residents with these conditions.
We were interested in obtaining information on residents in Medicaid-funded community residential care that could guide policymakers, managers, and potential residents in understanding these important care options. The movement to place state-funded clients in community residential care has created new opportunities, but also new risks for residents, providers, and administrators. Concerns remain about quality of care, especially given rising acuity levels, lack of information to guide consumer choice, the financial effects of expanding these services in the face of increasingly strained state budgets, and lack of information about program performance.
Adult family homes are noteworthy in serving a population with remarkably higher care needs. Attention should continue to be paid to supports such as training and consultation that may be needed for these settings to provide good quality care to this vulnerable population. The provision of such supports is especially challenging given the small size and geographic dispersal of these settings with many owners/managers for whom English is not their first language. Adult residential care settings serve somewhat younger, less educated men, with less cognitive impairment and less need for basic ADL assistance, some of whom have histories of homelessness and substance abuse. Adult residential care residents were significantly less likely to report satisfaction with the decision to move, the setting overall, the food, and respectful treatment from staff, which deserves further attention.
The role of assisted living settings is especially interesting. Assisted living served the oldest residents in the study, with significantly lower need for ADL assistance and fewer behavior problems than adult family home residents. They were also most likely to be in the original residence at follow-up, possibly indicating higher satisfaction or less need to move to a higher level of services. Assisted living settings nationwide serve primarily a private pay population, and published state-wide payment rates in Washington were also higher for assisted living. The physical plant requirements of private rooms and kitchenettes distinguish these settings, with possible benefits of higher levels of privacy and autonomy.
Members of the study team are now conducting an evaluation of a pilot program of community-residential care in the Department of Veterans Affairs. We hope these studies can assist in moving toward the long-term goal of designing the optimal system of residential care services that provides persons in need of long-term care with a choice of high quality programs that best meet their unique needs while making the best use of finite resources.
For more information contact Susan Hedrick PhD., at firstname.lastname@example.org or 206.764.2085.