Mary F. Hayden

Mortality Among People With Mental Retardation Living in The United States: Research Review and Policy Application

A literature review was conducted to examine mortality among people with mental retardation and related developmental disabilities living in the United States and determine how research findings relate to or assist in policy development. Two questions were considered: What do the differences between earlier and more recent research mean to policy development? What does the research literature indicate about other aspects of mortality that relate to policy development? Five major limitations of mortality research as a useful tool to policy development were discussed. Recommendations were made to identify what policymakers need to do to develop an oversight mechanism and type of research needed to assist policymakers in providing appropriate services and supports to this population.

Health Status, Utilization Patterns, and Outcomes of Persons With Intellectual Disabilities: Review of the Literature

A literature review was conducted to analyze existing data on health status, health care utilization, and medical outcomes of persons with intellectual disabilities. We found that barriers exist, but evidence indicates that (a) individuals with intellectual disability and medical needs are living in the community, (b) people with significant medical conditions can be maintained in community settings, and (c) medical supports can and are provided to people with intellectual disabilities and allied medical conditions to enable community living. However, some people had unmet medical needs, and the availability of and access to community-based services were problematic for others. These contradictory findings indicate that it is possible to provide services in the community, but the service delivery system needs improvement.

Effectiveness and Quality of Individual Planning in Residential Settings: An Analysis of Outcomes

Individual Habilitation Plan objectives for adults with mental retardation living in institutional or community settings were evaluated for effectiveness and quality. Effectiveness was assessed by contrasting change in relevant outcomes over time for participants with and without individual plan objectives in specified content areas. No significant change in outcomes associated with having an objective was detected for any of the content areas. Except for functionality, ratings of individual plans on all quality domains were poor. Regression analyses mostly failed to show any significant relationship between quality domain ratings and outcomes, although there was weak but inconsistent evidence for validity of the technical adequacy and data-collection quality domains. Findings present a challenge to current expectations that presence and quality of IHP objectives are associated with improved outcomes.

Longitudinal study on the adaptive and challenging behaviors of deinstitutionalized adults with mental retardation

Adaptive and challenging behavior changes associated with movement from Minnesotas state institutions to community homes were examined. Most of the 148 participants who moved had severe or profound mental retardation, significant challenging behavior, and several decades of institutionalization. Adaptive and challenging behavior were assessed in the institution and thereafter annually in the community. Relative to institutional levels, adaptive behavior declined among residents who moved to community ICFs/MR but was unchanged for the HCBS Waiver group. Challenging behavior tended to worsen initially but, except for internalized behavior, no longer differed from institutional levels by the second community assessment. Change in challenging behavior was unrelated to community residence type. Previous papers involving these participants showed consistent lifestyle enhancements and reduced service costs relative to the institution.

Longitudinal study of institutional downsizing: effects on individuals who remain in the institution.

In a 4-year study we examined the longitudinal effects of deinstitutionalization programs on those who remain in institutions being downsized. Individual outcomes investigated were community access, social activities, community inclusion, family relationships, and choice. Effects of residential relocation on individual outcomes such as adaptive behavior were evaluated and total daily per-person expenditure on institutional services for participants was determined. Downsizing was associated with decreased community integration but no change in most other outcomes. Availability of therapy services fell over time, and individuals experienced many residential and day program moves within the institution. Per person expenditure on services increased substantially. Finally, no significant changes in adaptive behavior were associated with intrainstitutional moves.

Effectiveness of challenging behavior IHP objectives in residential settings : A longitudinal study

Effectiveness of challenging behavior Individualized Habilitation Plan (IHP) objectives in residential settings was examined. We evaluated three indicators of successful intervention: discontinuation of challenging behavior IHP objectives, change in challenging behavior over time, and frequency of one-to-one crisis intervention and found little evidence of effective intervention. Less than a fourth of participants had a challenging behavior objective discontinued within a year. There was no significant change in challenging behavior from one annual assessment to the next, although the decrease in asocial challenging behavior approached significance. Frequency of crisis intervention also did not change significantly over time. These findings suggest that most challenging behavior IHP objectives are ineffective in reducing challenging behavior.

Interventions for Challenging Behavior in Residential Settings.

Predictors of interventions for challenging behavior by residential service providers were examined. Three forms of intervention investigated were (a) Individualized Habilitation Plan (IHP) objectives concerning challenging behavior, (b) one-to-one crisis intervention in the preceding 30 days, and (c) services from behavior management professionals in the preceding 6 months. Findings across these three interventions were largely consistent. Externalized challenging behavior (outwardly directed aggressive or disruptive behavior aimed at other people or objects) was consistently associated with all interventions. The implications of these findings for service providers and service users are discussed.

Medical Conditions, Level of Care Needs, and Health-Related Outcomes of Persons with Mental Retardation: A Review

A literature review was conducted to analyze existing data on health needs of people with mental retardation and possible barriers to integration in the community. Information was obtained on medical conditions, level of care needed, and health-related outcomes. The type and range of medical care, resources, and support services needed to maintain individuals with medical problems were identified, as were barriers to and recommendations for the provision of community-based medical care. Although there are barriers to the provision of services to people with mental retardation and allied medical conditions, there are people who currently live in the community who have the same type of medical conditions and who require the same level of care needed as those who live in institutions. Medical services are typically, but not always, available to persons with mental retardation who reside in the community. Availability and access to services are addressed. Recommendations for future research and policy implications are presented.

Programs and Services Received by Persons With Mental Retardation in Three Models of Small Community Residences

Programs and services received by a national sample of 336 persons with mental retardation in 181 foster homes, non-Intermediate Care Facility for the Mentally Retarded (ICF-MR) group homes, and ICF-MR-certified group homes of 6 or fewer residents are described. In the previous 12 months 85% of residents had been visited at least twice by a case manager, 99% had seen a physician, and 95% had visited a dentist. In all, 95% of 750 residents of the 181 sampled facilities had day time vocational or developmental programs away from the residence, but supported or competitive jobs were held by only 5% of the adults below age 65. Specialized services (e.g., those services provided by medical specialists, therapists, counselors, and psychologists) utilization was considerably higher for residents of ICF-MR-certified group homes as were the per resident costs of care. Multiple regression analysis found living in an ICF-MR to be a better predictor of hours of specialized services received than the physical, sensory, intellectual, or functional characteristics of residents.