Showing papers by "Tamar Heller published in 2012"

Support needs of siblings of people with developmental disabilities

Abstract: 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.

Prevalence of falls and risk factors in adults with intellectual disability

Abstract: The purpose of this study was to examine the prevalence of falls and risk factors for falls in 1,515 adults (≥ 18 years) with intellectual disability using baseline data from the Longitudinal Health and Intellectual Disability Study. Nearly 25% of adults from the study were reported to have had one or more falls in the past 12 months. The prevalence of falls increased with advancing age. A series of univariate and multivariate logistic regressions were performed to identify risk factors for falls in the full sample and in subsamples. The risk factors for falls in adults with intellectual disability are being female, having arthritis, having a seizure disorder, taking more than 4 medications, using walking aids, and having difficulty lifting/carrying greater than 10 lb.

The Toronto declaration on bridging knowledge, policy and practice in aging and disability

Abstract: We, as organizers and participants of the 2011 Growing Older with a Disability (GOWD) Conference, a part of the Festival of International Conferences on Caregiving, Disability, Aging and Technology (FICCDAT), held in Toronto, Canada June 5–8, 2011 forward this declaration and invite governmental, non-governmental, professional, and consumer stakeholders to join us in supporting and implementing this plan of action.

Self-directed Support: Impact of Hiring Practices on Adults with Intellectual and Developmental Disabilities and Families

Abstract: The study examined the differential experiences and outcomes for people with intellectual and developmental disabilities and their families receiving self-directed services based on the type of personal support worker hired (parents, siblings, other relatives, friends, and agency staff). The sample consisted of 372 participants in a self-directed waiver program who used personal assistance services. Results indicated that the caregiver's satisfaction with the personal support worker, self-efficacy in managing personal support workers, and mental health varied significantly based on type of personal support worker hired. Also, the physical health and daily choice making of the adults with disabilities differed significantly by type of personal support worker hired.

Advancing a research agenda for bridging ageing and disability

Abstract: Research on ageing with disability dates back more than four decades. However, the evidence base supporting practice and policy across the fields of ageing and disabilities remains small in virtually all disciplines. In part, this can be attributed to the bifurcation of ageing and disability research, but it is also linked to the lack of a structural framework that supports bridging the areas of ageing and disability and the very few researchers working within these boundaries. In the past decade, declarations on the need to bridge ageing and disability have been forwarded [1–3], and the Toronto Declaration [4] now adds its voice from a global perspective. Despite the prior calls, advancement in bridging ageing and disability has been limited. The Toronto Declaration seeks to amplify the call for more integrative and interdisciplinary research and for effective knowledge transfer and translation of research into tangible outcomes for persons ageing with disabilities, their families, and their communities. In addition, it specifies the need for dedicated funding for this work and the inclusion of people with disabilities, of all ages, and their families in this work.

Consumer-directed support: Impact of hiring practices on adults with ID/DD and families

Abstract: Aim: Consumer-directed long-term care services have grown dramatically over the past decade, both in the US and internationally. Flexibility in hiring, including the ability to hire family and friends, is a key determinant of interest in consumer direction. This study examined the differential experiences and outcomes for people with intellectual and developmental disabilities (ID/DD) and their families receiving consumer-directed services based on the type of personal support worker (PSW) hired (family, friends, agency staff, non-agency staff). Method: The data includes responses from written surveys sent to families in the Illinois Adult Home Based Support Services Program (a Medicaid waiver program) along with interviews conducted with adults with ID/DD in the program. The measures filled out by 446 families using the Family Satisfaction with Consumer Directed Supports survey (and consumer interview) were used for analysis of satisfaction with the PSW, self-efficacy in hiring and managing the PSW, and the self-determination and community participation of the adults with ID/DD. BRIDGING KNOWLEDGE, RESEARCH AND POLICY: The Growing Older With a Disability (GOWD) Conference, Toronto, Canada, June 5-8, 2011 International Journal of Integrated Care – Volume 12, 16 November – URN:NBN:NL:UI:10-1-113862 – http://www.ijic.org/ Results: PSWs were most likely to be family members followed by agency staff, friends, and nonagency staff. There were no significant differences between groups on demographics of the person with ID/DD or of the primary caregiver, with the exception of caregiver gender and household income. Families who had lower income were less likely to hire agency staff. Ancova analyses controlling for these two factors indicated significant differences between different types of PSWs regarding the family caregiver’s satisfaction with their PSW and their self-efficacy in hiring and managing their PSWs. Participants who hired a family member reported higher levels of satisfaction, followed by friends and staff. However, family caregivers felt the highest amount of self-efficacy when they hired non-agency staff followed by friends, family, and agency staff. There were no significant differences in the self-determination and community participation of the adult with disabilities. Conclusions: These findings suggest that families within a consumer directed program are most satisfied when they hire family and friends as PSWs. However, when they hire non-agency staff they feel better able to manage the PSWs. Also, the extent to which families hire other family members as PSWs is influenced in part by economic considerations. Furthermore, there is little evidence that hiring family members restricts the self-determination and community participation of adults with ID/DD.