The Identification and Evaluation of Best Practice Assistive Technology and Universal Design Solutions and Services for Older Adults with Mental Retardation

Joy Hammel, Ph.D.,OTR/L, FAOTA; Susan Nochajski, Ph.D., OTR/L; Tamar Heller, Ph.D.; Glenn Hedman, ME; William Mann, Ph.D., OTR/L, FAOTA

Statement of Problem and Background
Conceptual/Theoretical Model
Research Questions or Hypotheses
Progress to Date
Key Findings and Potential Implications

Statement of Problem and Background

Many older adults opt to remain at home and are increasingly utilizing assistive technology and environmental interventions (AT-EI) to do so (AARP, 1997; Heller, 1998; LaPlante, Hendershot, & Moss, 1992). However, there are few studies of AT-EI usage and long term impact with people aging with developmental disabilities that would provide implications for effective service delivery.

AT has been shown to address mobility and sensory impairments among older adults in general (Gitlin, Schemm, & Landsberg, 1996; Mann et al., 1998) and with AD (AD) (Mann, Kurzura, et al, 1992; Nochajski, Tomita, et al, 1996; Gitlin, Corcoran, et al, 2001). However, older adults with developmental disabilities (DD) are a heterogenous group, with varied cognitive, mobility, communication, and sensory issues that affect function and community living status (Hammel, Heller, & Gui?shuang, 1998; Mendelson, Heller, & Factor, 1997). At the activity level (WHO, 2000), surveys of adults with mental retardation (MR) and their caregivers have identified unmet needs for communication, environmental control, self care, and home adaptation technologies (Wehmeyer, 1998; Parette & VanBiervliet, 1992). They also note that the primary barriers to getting AT included funding and lack of information and training, pointing to the need for functionally-based, long-term support interventions. The Nursing Home Transition study (Mendelson et al., 1997), sponsored by the RRTC, followed over 150 people with developmental disabilities who resided in nursing homes and transitioned to the community, and the impact of AT on their functional performance over time. The Cerebral Palsy Clinic project involved functional screenings of 35 people with cerebral palsy and MR with referrals to AT services.

At the societal participation level (WHO, 2000), a survey by the National Council on Disability (1993) reported that older adults used AT to reduce their dependency on others and avoid institutionalization. Studies also show high rates of AT abandonment that can be attributed to societal barriers, including funding, lack of consumer involvement, lack of access to information resources and social supports for using AT on a long term basis, AT unavailability, AT break down and complexity, and general physical inaccessibility (Gitlin & Burgh, 1995; LaPlante et al., 1992; Mann, et al, 1993; Philips & Zhao, 1993). As caregivers of older adults with MR age themselves, we can anticipate even greater difficulty in maintaining and supporting the use of AT over time. Studies have demonstrated that intervention targeted toward building the competence of caregivers and individuals with AD together had mutually beneficial effects on both groups (Corcoran & Gitlin, 1992; Gitlin et al, 2001).

Conceptual/Theoretical Model

This research utilizes the World Health Organization's International Classification of Functioning (WHO, 2000) as a framework for examining AT-EI processes and outcomes across the levels of body structure and function, activity, participation and the environment. Theoretically, the research is based upon the Competence Environment Press (Lawton & Nahemov, 1973; adapted for use by Gitlin & Corcoran, 2001) that asserts that as people age and experience threats to their sense of competence, the environment either can pose a significant press, or demands, on the person that can then result in negative functional outcomes, or can support the person and result in maintained competence and increased flexibility and adaptability in responding to future threats.

Research Questions or Hypotheses

Aim 1: Identify AT/UD needs, issues and barriers to effective service delivery and support specific to people aging with developmental disabilities and people in their social worlds who support them.

RQ1 What AT/UD products, services and supports are most needed by people aging with developmental disabilities and their social supports?

RQ2 What specific disability and environmental issues are affecting consumers, family and staff from using AT/UD in everyday activities in home, work and community environments?

RQ3 What are the impairment, functional performance and social participation level outcomes of standard AT services? How satisfied are consumers and families with AT/UD current services and solutions?

Aim 2: Provide training on aging, disability and AT strategies to social supports to enable them to support consumers in identifying issues, needs and resources.

RQ1 Does training on aging with DD and AT/UD strategies help family, staff and case managers better identify and support consumer needs?

Aim 3: Design, implement and pilot test a AT long term support and advocacy (ATLAS) intervention in a clinical trial. Target audience: consumers, family/ caregivers, community agency staff.

RQ1 What are the outcomes of an Assistive Technology Long term Support and Advocacy (ATLAS) intervention in meeting long-term functional and participation goals identified by consumers and social supports in their lives? Are outcomes maintained over time? How does this compare to outcomes gained through standard AT services?

RQ2 What is the cost-effectiveness of ATLAS in relation to resources needed and benefits gained versus existing standard practices?

Methodology - Aim 1

Data from two outcome studies were used to examine these questions: 1) a study of people transitioning out of nursing homes to the community (data collection completed, analyzed and published: Hammel, Lai & Heller, 2002), and 2) an ongoing outcome study of community-based people aging with developmental disabilities that receive standard AT services to address age-related functional issues at two sites: Chicago, IL and Buffalo, NY (study currently in process with data on 55 people currently being analyzed for a manuscript in preparation). Following is a summary of the first analysis. The second study used additional measures across the ICF schema (e.g., ADL & IADL functional status, community living and participation, environmental barriers, caregiver status, quality of life, and AT service delivery satisfaction and unmet needs) and is currently in process.

Progress to Date - Aim 1

Study 1: A longitudinal study of 109 people with developmental disabilities, age 35 and older, was done to study the additive impact of mid to later life assistive technology and environmental interventions (AT-EI) on function and living situation status. All subjects were trying to transition out of institutional settings to community settings. Functional status were measured at two times (Time 1 baseline and Time 2 an average of 3 years post intervention) on 32 functional and social participation activities via OT FACT under two conditions: without AT (person only) and with AT (environment adjusted). Rasch analysis was performed to convert ordinal functional scores to equal interval measures, with 95% confidence intervals computed to compare differences in function, with and without AT, across time. Qualitative interviews and observations were conducted with consumers and social supports in their lives to describe their experiences, needs and interactions surrounding AT use in everyday life.

Key Findings and Potential Implications - Aim 1

Results indicated that over 70% of subjects had better function with AT versus without AT at both time points. Over time, function did not change when rated without AT; however, when rated with AT, 13.6% had improved function at Time 2. Subjects living in the community at Time 2 had significantly higher functional scores as compared to subjects in institutions, regardless of AT condition. Additional quantitative and qualitative data on AT-EI use, needs, and barriers and supports to its integration into everyday activities are reported. Results suggest a beneficial impact of later life AT-EI assessment and programming for people who are aging with developmental disabilities, and qualitatively point to the influence of the social and physical living context upon AT-EI use and relationship to community living decisions long term. Social supports had a strong influence upon whether AT-EI was even considered, and, if available, whether it was set-up consistently on a daily basis to enable functional use or not by the person, thus AT either became a support or a barrier in large part due to the influence of the social supports and caregivers. Issues of time, lack of knowledge or training on how to address needs or set-up AT, perceptions about the person's potential to benefit or not from the AT, and turnover and burnout of staff negatively influenced use of AT beyond those activities in which the AT made the task easier for the caregiver, such as transferring or mobility. Of particular note, AT was identified as underutilized in social, recreational, spiritual and community participation activities. Greatest unmet AT needs were reported in the areas of: communication, operating basic appliances (e.g., TV, VCR, radio), mobility in room and in neighborhood/community, community outings, leisure/entertainment, and taking a bath/shower.

Methodology - Aim 2

A series of workshops were held at community sites throughout Illinois and New York addressing the need for information by care providers pertaining to normative age related changes and accelerated aging with disability trends, the impact of these changes on function, community living, and societal participation, and the use of assistive technology and environmental interventions as supportive strategies. Training modules in six content areas, Seating and Positioning, Cognition and Learning, Communication, Sensory Functions, Upper Extremity Function, and Funding and Service Provision, were developed and used during the workshops. Training included introductory lectures, powerpoint slides, video case studies, interactive learning activities, and a hands-on opportunity to try out various technologies.
Participants in the workshops (n=97) were asked to complete a 20- item Pre and Post quiz that included questions on both general knowledge and the application of knowledge. Participants included family members, consumers, case managers, and staff from community group home and day programs. Results indicated that the workshops were highly effective. Preliminary analysis of the data indicated significant differences (F= 33.22; p<.001) in the overall mean between the pre (Mean = 12.70) and post test (Mean = 16.58).

Progress to Date - Aim 2

Results from the McNemar tests on individual test items indicated that the participants' greatest improvements were found in knowledge questions pertaining to communication, seating and mobility systems, and the normative changes associated with aging (p < .001). These results are currently being summarized within a Manuscript in Preparation for submission in Fall, 2002. Additionally, the training modules were combined into an interactive educational package that is available through the RRTC Clearinghouse for use in community-based settings.

Key Findings and Potential Implications - Aim 2

While improvement was also significant in items pertaining to the application of knowledge, the participants' ability to apply knowledge remained low even after the workshops. This indicates a need for more long term support in this area in real life scenarios that require identification of needs and problem solving strategies to address these needs. A workshop or training materials alone are not adequate for applying knowledge to complex situations. The information obtained in this study has been helpful in providing direction for the ATLAS intervention trial.

Methodology - Aim 3

Sixty subjects from the second study described in Aim 1 are randomly assigned to participate in the ATLAS intervention group or a control group receiving existing services. The clinical trial will take place over 2 years (Yrs. 3-5) at Chicago and Buffalo. Based on needs identified in Aim 1 & 2, ATLAS involves the development of long term support teams of consumers who use or need AT, their family and caregivers, and key community staff. Given support from Drs. Gitlin and Corcoran, the intervention adapts their caregiver-client functional problem solving approach used with people with Alzheimer's Disease, and applies the Competence-Environment Press framework to people aging with developmental disabilities and their social supports in community-based settings. Additionally, an advocacy and social networking component has been added to link consumers and caregivers with information resources and disability groups where they can trade strategies with other AT users.

The intervention involves 5, 2 hr. sessions primarily focused in the home and surrounding neighborhood. Consumers and social supports work with an OT for 4 sessions to identify issues they are facing related to community living and participation, and to problem solve how to address these issues through environmental strategies (physical modifications, technology, social environment changes, information access, etc.). In the 5th visit, a disability advocate works with the team to link them to information, resources and social support networks in the community and through Internet. Qualitative and quantitative data is gathered at each visit, following the protocols used by Gitlin and Corcoran in their randomized trials.

Function (e.g., independence, safety, and difficulty) in basic and instrumental ADLs, leisure and community living activities is measured via self report and observation using the C-CAP tool validated by Gitlin. Additionally, occupational goals (e.g., importance and satisfaction ratings), environmental barriers and strategies tried, and readiness to learn/change are assessed at baseline, and again at 3 months post (end of intervention) and 9 months post to see change over time.

Progress to Date - Aim 3

At this time, analyses are premature; however, we have already noted that by targeting this intervention beyond the individual to the social environment has already resulted in environmental changes that have affected many people. For example, two subjects seen in separate group homes both identified issues with bathing and bathroom access.

Key Findings and Potential Implications - Aim 3

Because of this, all home members have been noted improved access and function. Thus, we hypothesize that the strength of the intervention, and its success if shown, will rely on how effectively the social environment can be brought into the collaborative problem solving team to integrate AT-EI into everyday contexts.
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Progress to Date - Overall

For Aim 1, analysis of needs and outcomes have been completed and published for 1 study. The second outcome study of standard AT service delivery outcomes will enroll up to 60 subjects, 55 of whom are currently enrolled, and will follow them up to 1 year post AT assessment. Completion of this study is anticipated in July, 2003; however, preliminary repeated measures analyses are already being implemented with the first 50 subjects to see trends and patterns. We also have an opportunity to collaborate on a national survey of AT use with Dr. Wehmeyer at the University of Kansas and his NIDRR center grant on cognitive technology. He will repeat his earlier surveys on AT use, and we will be adding a component on evaluating access ready and age-friendly community development needs with people with developmental disabilities. The survey is planned for Fall, 2002, and will compliment our needs assessment work to date.

For Aim 2, the social support AT training has been completed with 97 subjects, and a journal article manuscript is currently in preparation for submission in Fall, 2002. Additionally, the training program developed in this study is being disseminated through the RRTC Clearinghouse.

For Aim 3, the pilot trial of the ATLAS intervention is currently in progress and is approximately on schedule as planned. Fifteen subjects have received the intervention, with an additional 15 currently in process. We anticipate completion in July, 2003 with publications and presentations to follow.

Key Findings and Potential Implications - Overall

See results and implications above under each Aim. In addition to the specific conclusions discussed for each Aim, we have also identified a new area of research and development through our state of the science symposium, that of designing and building access ready and age friendly communities that integrate people with developmental disabilities into all aspects of participation. The symposium roundtable of consumers, therapists, architects, engineers, anthropologists and space planners has provided detailed ideas for future development and research in this area (see the summary of the state of the science symposium in this briefing book). To date we have completed two reports intended for scientific peer-review publication - one has been published and one is currently under review. It is our expectation that all five studies will be published. Hammel and Nochajski edited a special issue on research, programming, and practice implications in the Journal of Occupational and Physical Therapy in Geriatrics.

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