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Beyond Olmstead: Community-Based Services for All People with Disabilities
Paul Saucier, M.A., Senior Policy Analyst, Institute for Health Policy, Muskie School of Public Service, University of Southern Maine, Portland, ME.
Tina Kitchin, M.D., F.A.A.P., Medical Director, Office of Developmental Disabilities Services, Oregon Department of Human Services, Salem, OR.
The Olmstead decision reinforced the priority of people in nursing homes, State facilities, and other institutional settings to have opportunities to live independently at a time when State policy is responding to the preference of people with disabilities to live in community settings. Several States have developed initiatives to identify and assist people living in institutions to return to the community.
The Home to Community program is a statewide nursing home transition program in Maine funded by the Robert Wood Johnson Foundation. The program was implemented by Alpha One, Maine's only Independent Living Center.
The program uses a consumer-directed services program model whose primary goals were to help 40 people, ages 18-59, move out of nursing homes and to:
- Improve health.
- Improve quality of life.
- Maintain functional capacity.
The evaluation used a before-and-after design with a comparison group. It used existing data sources (claims and assessment data), supplemented by in-person interviews. Consumer focus groups helped to identify meaningful indicators and to advise on other design features (e.g., survey intervals).
The treatment group consisted of 50 people with a disability who enrolled in the transition program. The 151-person comparison group consisted of people in nursing homes with similar characteristics who did not enroll. The program measured:
- Length of stay in nursing home.
- Open sores or ulcers.
- Independence in activities of daily living.
- Sense of privacy.
- Life control.
- Other selected outcomes.
In most of the measured outcomes, the results were favorable for the participants. Quality of life improved, with most other indicators showing improvement or no change. Compared with people who remained in a nursing home, people who relocated to the community experienced:
- Higher nursing home discharge rates.
- Lower nursing home readmission rates.
- Lower death rates.
Participants in the program reported increased control over several areas of their lives.
Transition becomes more challenging as length of stay in the nursing home increases. Federal policy limits case management services, which are needed to help plan and prepare for relocation, to 6 months prior to relocation. This may limit the program's ability to help people who have lived in a nursing facility for longer periods. Nursing home transition programs should be integrated with a State's long-term care system for assessment and service authorization.
Nursing home staff should be involved in the transition. Independent-living candidates need more service and monitoring at the onset of program enrollment, but the need diminishes in the case of less chronically ill participants. Affordable and accessible housing is critical to the success of the program.
Participants who relocated:
- Improved their health.
- Were more content with their quality of life.
- Maintained the ability to perform basic daily activities.
Although the findings suggest that nursing home transition programs result in positive outcomes for consumers, the number of participants in the study was very small, and caution should be taken to avoid overgeneralizing the results.
Oregon's philosophy is that nearly everyone can be better served in community-based settings than in nursing homes. Oregon has a limited supply of nursing homes and provides a full range of in-home, community, and residential services. These are provided through Medicaid home and community-based services waivers to individuals in older populations who would otherwise be in a nursing home. The State has also closed most of its institutions serving people with developmental disabilities. Only about 75 people with developmental disabilities live in institutions. The State has successfully served people who are medically fragile and have difficult behavioral conditions safely in the community.
Several transition lessons were discussed. For example, people die because of multiple small errors and glitches, usually not one major mistake. It is often the person with lesser needs rather than the person with multiple complex needs that experiences problems, because facilities focus their efforts on the person that appears to be the most needy and may overlook those with less apparent needs.
Institutions and communities have different cultures and languages, and the differences can create problems. The two systems distrust each other, which also contributes to treatment errors. Often the unknown or the casually accepted assumptions about care lead to errors and poor outcomes. Attention must be paid to bridge the gap between institutions and community staff. A common culture, language, and care has to be taken by both groups in transitions to prevent deadly errors that, in the majority of cases, could be prevented through the use of common sense.
The basic issues needing attention are:
Three critical areas to be addressed in the transition process are:
- Communication of information: Information must be complete. A well-organized person who gathers the information must have a great deal of background knowledge about the institution and the community systems. Transition programs benefit by assigning the most experienced staff.
- Standardized training: Staff training is essential to ensure proper transition and continuity of services. A basic 2-week mandatory training for all new staff is also recommended. Oregon's training includes physical management (lifting, transfer, and the rationale for tasks), behavioral health, and people. Staff from the institution who know the person well should work in the community setting for a few days in order to ensure proper and smooth transitions.
- Monitoring services: Bimonthly monitoring of service by case managers was recommended. Standardized checklists are used during monitoring activities. In Oregon, case manager visits are supplemented by monthly monitoring by registered nurses, in addition to direct nursing services, with planned technical assistance and monitoring by institutional staff.
Oregon assigns one person to handle all complaints and reports to gain a broader perspective of the impact of transition initiatives. Creating teams of institution and community staff contributed to better communication and transition plans. For example, scouts can explore other community agencies and develop community expertise around existing community-based services.
Before the transition, it was also important to identify health professionals who would serve the person and ensure that proper medical information was sent. Successful transitions require a range of activities and supports, and one professional needs to have the authority to postpone the transition if all the key pieces are not in place.
Additional standard requirements for serving people included:
- Monitor fluids for people who cannot independently access them.
- Conduct an aspiration assessment for everyone who is fed by someone.
- Utilize a risk assessment tool.
- Follow standard protocols.
Bolda EJ, Keith RG, Richards MF, Saucier PJ. Evaluation of alpha one independent living center's home to the community demonstration program. Portland (ME): Muskie School;2001 Jun.
Kitchin T. Could this happen to you? Portland (OR): Office of Developmental Disability Services, Department of Human Services;2001 Jul.
Aspiration protocol. Portland (OR): Office of Developmental Disability Services, Department of Human Services;2001 Jul.
CIP V case management checklist (after first 60 days). Portland (OR): Office of Developmental Disability Services, Department of Human Services; 1999 Jun.
Constipation protocol. Portland (OR): Office of Developmental Disability Services, Department of Human Services;2001 Jul.
Dehydration protocol. Portland (OR): Office of Developmental Disability Services, Department of Human Services;2001 Jul.
Risk identification tool. Portland (OR): Office of Developmental Disability Services, Department of Human Services;2001 Mar.
Seizure protocol. Portland (OR): Office of Developmental Disability Services, Department of Human Services;2001 Jul.
Who's coming? CIP V quality assurance monitoring components. Portland (OR): Office of Developmental Disability Services, Department of Human Services;1999 Oct.
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