Moving Out of the Nursing Home to the Community …



Moving Out of the Nursing Home to the Community: Effecting Social Action Change:

Summary Outcomes Report to the National Institute of Disability & Rehabilitation Research

This project was funded by the National Institute of Disability & Rehabilitation Research, Grant # H133G010033;

Project Office: Bonnie Gracer: Bonnie.Gracer@

Principal Investigators: Joy Hammel & Carol J. Gill

Joint Doctoral Program in Disability Studies

Departments of Occupational Therapy & Disability and Human Development

University of Illinois at Chicago

1919 W. Taylor Street, Rm 311, Chicago, IL 60612

312-996-3513; hammel@uic.edu

In Partnership with Access Living, Chicago, IL

and Progress Center, Forest Park, IL

Co-investigators:

Larry Voss, Susan Magasi, Tom Wilson, Diane Coleman, Mary Lopez, Evelyn Rodriguez, Mark Karner, Mia Coulter & Members of the Social Action Project

I. Project Summary

This research project developed, evaluated and disseminated a social action, community reintegration intervention to support disabled people as they transition out of nursing homes into long term community living and participation. The project involved a collaborative partnership among Centers for Independent Living (CILs), the Disability Studies Doctoral Program (UIC), the Center on Disability Research at UIC, and state and national agencies and disability organizations involved in community reintegration, living, and participation supportive services and resources.

The project grew out of 3 major problems: 1) the number of disabled people residing in nursing homes continues to increase despite legislative mandates to provide community-based alternatives, 2) transitioning to the community after an extended nursing home stay is a difficult process, and 3) once out, disabled people report many societal barriers that threaten their ability to remain in the community and to fully participate in activities, roles and groups of choice. The goals of this project were to:

1) document the experiences, issues and goals of people with disabilities who are trying to move out of nursing homes to the community and to live in the community long term,

2) develop, evaluate and share a Social Action Community-Reintegration Program (abbreviated as CR) to support disabled peoples’ choices and control over community living and participation decisions, and evaluate the impact on their transition to the community and long term community living,

3) use knowledge gained in from within the disability community to effect policy and systems change to improve long term community living options, to provide evidence to the disability community on factors most influencing community reintegration, and to build critical consciousness and community among disabled people to serve as a social support throughout the process.

II. Research Design & Methods

A Participatory Action Research (PAR) approach was used as the overall framework for this project, actively involving people with disabilities in all aspects of the research from grant development to needs assessment focus group facilitation to CR program implementation and evaluation. The project included 4 phases: 1) PAR stakeholder focus groups to develop and refine the Social Action Community Reintegration (CR) intervention, 2) intervention field testing, 3) a controlled intervention trial with 140 disabled people who are transitioning, and 4) a series of PAR member checking focus groups and public town hall meetings to evaluate and refine the intervention, and to effect sustained social action change in the community. The CR program was tested by a diverse, cross-disability sample as defined by the Americans with Disabilities Act, including people with physical, psychiatric, cognitive, sensory and multiple impairments.

Quantitatively, we examined changes in community living status, community participation, resource management, individual & collective choice and control, and social and community relationships over time between groups using repeated measures multivariate analysis of variance with post hoc analysis. Quantitative data analysis was conducted using one of two models. The first was to analyze continuous variables, examining changes in group means over the time of the transition from the nursing home to the community. These mean changes are described in the Results, and are associated with an F-ratio. The F-ratio is for the group by time interaction from the associated repeated measures analysis of variance. For the discrete variables (Are you living with the people that you would choose to? Yes or no.) transition probabilities were examined (The likelihood that an individual who answered ‘no’ to this question at time 1 will answer ‘yes’ to it at time 2.) between three groups:

• NH-NH: Those individuals that were living in the nursing home at baseline and remained there at Time 2 (3 months post).

• C-C: Individuals who had recently transitioning from the NH to the Community and had just entered Community at baseline, and remained in the community by T2. This group can be thought of as representing long-term effects of community living after transition.

• NH-C: Individuals who transitioned from NH at baseline to Community by T2. This group can be thought of as representing short-term effects of community living during transition.

These analyses are represented in Results, using Chi-square statistics, to test for different transition probabilities.

Throughout the PAR process, we also used qualitative methods to examine what community living, participation and control meant to participants and the processes they went through and barriers they faced in realizing these, and to evaluate the Social Action CR Program effectiveness via life story narratives, individual interviews, PAR focus groups, and public town hall meetings with participants and stakeholders to share and member check all results and to action plan systems and policy change initiatives to address issues identified. Qualitative data was analyzed by constructing thematic and narrative accounts of transitions and community living experiences, followed by multiple levels of comparison to triangulate findings and apply them to the emerging descriptive models. Member checks were conducted at the end of every intervention program with the participants, and again in large public town hall meetings, to share account summaries and findings, check trustworthiness of interpretations, and action plan future research and policy and systems change initiatives.

III. Community Reintegration Intervention Results

A. Participant Demographics

The body of the quantitative results are presented in a series of tables. The first looks at the demographic characteristics of the sample of people who were involved in the CR program intervention trial (see Table 1). In regard to subject dropout, 146 people completed all Time 1 baseline interviews and data collection; by Time 2, 113 participants remained in the study, reflecting a dropout rate of 23%, a rate that was anticipated in the original design given lost contact as participants moved from public nursing home to nursing home without adequate phone access to call, or became homeless and were not able to remain in contact. Other research with a transient or homeless population have reported drop-out rates of 45% within urban populations similar to the one in which this study was conducted (Goldberg et al, 2005).

The first notable fact about the sample is that none of the demographic characteristics were significantly different across the three groups (nh-nh, com-com, nh-com) and there was no evidence of biases in group membership, thus allowing us to look at differences in key outcomes between groups. The sample also is representative of an urban population using Medicaid nursing homes (CHS, 2004). The second notable set of facts about Table 1 is that the sample is living in poverty (mean income of under $7200 per year with 97% of participants living below the poverty line throughout the study), is largely unemployed, and represents an extended period of time living in the nursing home (21-36 month range) . Although participants in the nursing home reported an average income of $7224/yr., this number reflected the income given to the Medicaid nursing home directly for room and board, with individuals only controlling a $30/mo stipend. The issue of signing away financial control and assets to the nursing home, and only receiving a small stipend per month, was cited by the majority of participants (95%) as a primary barrier to leaving the nursing home and moving to the community.

B. Getting into the Nursing Home

Descriptive data (see Figure 1) show the following as the most common reasons for entering a nursing home at baseline: lack of affordable housing, no community living choices offered, and doctor or social work presenting nursing home as the only or best choice, thus supporting the critical linkage between the environment (particularly economic and professional long term care system) and living situation decision making. Specifically, medical condition and need for medical care or therapy were not cited as primary reasons for going into the nursing home, a surprising finding in that these would be the anticipated justifications for nursing home placement. Instead, the decision making revolved around economics and access to information about choice.

| | |Participant Demographics | | |

| Time 1 to Time 2 (3 mo. Post baseline) status ( NH=Nursing Home); C (Community) |

| | | | | | |

| | |NH-NH |C-C |NH-C |Total |

|Community Living Status |  |68 |19 |26 |113 |

|  | | | | |  |

|Demographics | | | |  |  |

|Sex |  |  |  | |  |

|  |Male |37(54.4) |11(57.9) |13(50.0) |61(54.0) |

|  |Female |31(45.6) |8(42.1) |13(50.0) |52(46.0) |

|  |  |  | | |  |

|Race |  |  | | |  |

|  |Caucasian |15(22.1) |7(36.8) |4(15.4) |26(23.0) |

|  |African-American |47(69.1) |9(47.4) |20(76.9) |76(67.3) |

|  |Hispanic/Other |6(8.8) |3(15.8) |2(7.7) |11(9.7) |

|  |  |  | | |  |

|Age in years |Mean(SD) |46.1(8.6) |44.9(11.3) |44.8(10.2) |45.6(9.4) |

|  |  |  | | |  |

|Work |  |  | | |  |

|  |Part-time Employed |2(2.9) |1(5.3) |0 |3(2.7) |

|  |Supported Employment |1(1.5) |0 |0 |1(0.9) |

|  |Volunteer or Sheltered Workshop|3(4.4) |0 |0 |3(2.7) |

|  |Unemployed |61(89.7) |18(94.7) |26(100.0) |105(92.8) |

|  |No Response |1(1.5) |0 |0 |1(0.9) |

|  |  |  | | |  |

|Time in NH (months) |Mean(SD) |35.6(39.8) |28.8(26.7) |21.6(22.7) |31.9(35.8) |

|  |  |  | | |  |

|Annual Income |Mean(SD) |7224(2920) |7873(3545) |6636(3135) |7198(3078) |

| | | | | | |

|Notes |None of the differences are significant (p ................
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