John Kramer

Involvement of Adult Siblings of Persons With Developmental Disabilities in Future Planning

This study examined factors influencing involvement of siblings of individuals with developmental disabilities in future planning and their expectation of future caregiving. The sample consisted of 139 adult siblings recruited from an online sibling list and a sibling conference. Results indicated that few families made plans or involved siblings in the planning. Siblings who were most involved in future planning were older, more involved in disability activities, and provided more support to their sibling with disabilities. About 38% of siblings expected to be primary caregivers and were more likely to expect this role if the sibling with a disability lived closer and was female, had more sibling contact, provided them with more support, and felt greater caregiving satisfaction. Major support needs of siblings were for support groups, workshops-training on how to assume caregiving responsibility, financial support, and printed material on making future plans.

Support needs of siblings of people with developmental disabilities.

This qualitative study examines the support needs of adult siblings of people with developmental disabilities. A survey completed by 139 siblings of people with developmental disabilities captured the needs of adult siblings through 2 open-ended questions. A grounded theory approach was used, and the sibling responses anchored the analysis, interpretation of findings, and discussion using the constant comparison method. Eleven core variables and 3 overarching themes emerged. Three overarching themes for sibling support needs include: (a) getting disability-related information, (b) getting support for their caregiving role, and (c) enhancing the formal support system to address sibling needs.

Social capital through workplace connections: opportunities for workers with intellectual disabilities.

Using qualitative methods, this study examined the experiences of individuals with intellectual disabilities (IDs) in sheltered workshops and compared them to those in community employment. In particular, the study investigated how employment affects opportunities for the creation of social capital. Primary respondents were individuals with ID and secondary respondents were family members and employment services staff. Findings revealed that a form of social capital was created through workplace connections. Community employment did not increase social capital per se, but it did produce opportunities not available in the workshop. The role of family members emerged as critical in the support of community employment and its potential for social capital development.

Siblinghood through disability studies perspectives: diversifying discourse and knowledge about siblings with and without disabilities

Abstract Research about siblings where one has a disability has historically focused on the psychological outcomes of siblings of people with disabilities and has very rarely asked people with disabilities about their sibling relationships. This research focus represents the common individualizing approach and under-representation of people with disabilities that disability studies has argued against. Tracing the history of research about siblings and disability through de/institutionalization and towards current broader theories in disability studies, this article suggests that a range of disability studies perspectives can usefully de-individualize and expand research about siblings where one has a disability. Through examples of how materialist, feminist and inclusive perspectives can be applied to open up research about siblings and disability, the article argues that viewing siblinghood through the range of disability studies perspectives has the potential to expand this research field and represent new facets of siblings’ identities and lives together.

The Role of Aging and Disability Resource Centers in Serving Adults Aging with Intellectual Disabilities and Their Families: Findings from Seven States.

ABSTRACT For the first time, adults with intellectual and developmental disabilities (I/DD) are living to experience old age. The purpose of this project was to assess the activities of aging and disability resource centers (ADRCs) as they seek to serve older adults with intellectual disabilities and their family caregivers. Data come from 21 in-depth qualitative interviews with ADRC staff in seven states. Results of this qualitative analysis indicate that ADRCs are not focusing explicitly on adults aging with I/DD and their family caregivers, but meeting the needs of this population is a future goal of ADRCs. Challenges related to accessing and providing information and referral services for adults aging with I/DD were described and highlight existing unmet needs of this population. Supporting adults who simultaneously require aging and disability services requires true coordination of aging and disability service systems.

Building an Evidence-Based, Holistic Approach to Advancing Integrated Employment:

Since the introduction of supported employment in the Developmental Disabilities Act of 1984 and the Rehabilitation Act Amendments of 1986, there has been continued development and refinement of best practices in employment services and supports. Progress includes creative outcomes for individuals with significant support needs including customized jobs and self-employment, community rehabilitation providers that have shifted emphasis to integrated employment, and states that have made a substantial investment in Employment First policy and strategy. Despite these achievements, the promise of integrated employment remains elusive for the majority of individuals with intellectual and developmental disabilities. The number of individuals supported in integrated employment by state agencies has remained stagnant for the past 15 years, participation in nonwork services has grown rapidly, and individual employment supports have not been implemented with fidelity. This article presents preliminary findings from activities completed by the Rehabilitation Research and Training Center on Advancing Employment for Individuals with Intellectual and Developmental Disabilities and discusses a framework for organizing state and federal investments in research, practice, and systems change.