Ailey, S. H. & Marks, B. (2016). Technical Standards for Nursing Education Programs in the 21st Century. Rehabilitation Nursing. doi: 10.1002/rnj.278
Purpose The Institute of Medicine (IOM, 2000; 2002) exposed serious safety problems in the health system and called for total qualitative system change. The IOM (2011; 2015) also calls for improving the education of nurses to provide leadership for a redesigned health system. Intertwined with improving education is the need to recruit and retain diverse highly qualified students. Disability is part of diversity inclusion, but current technical standards (nonacademic requirements) for admission to many nursing programs are a barrier to the entry of persons with disabilities. Rehabilitation nurse leaders are in a unique position to improve disability diversity in nursing. The purpose of this paper is to discuss the importance of disability diversity in nursing.
Design The history of existing technical standards used in many nursing programs is reviewed along with examples.
Methods Based on the concept that disability inclusion is a part of diversity inclusion, we propose a new model of technical standards for nursing education.
Conclusion and Clinical Relevance Rehabilitation nurse leaders can lead in eliminating barriers to persons with disabilities entering nursing.
Marks, B. & Sisirak, J. (2017). NPs Promoting Physical Activity: People with Intellectual and Developmental Disabilities. The Journal for Nurse Practitioners, 13(1), e1–e5. DOI: 10.1016/j.nurpra.2016.10.023
People with intellectual and developmental disabilities (IDD) are not residing in large congregate care centers due to legislative, attitudinal, and treatment changes, and they are living longer than their peers of previous generations. With the absence of inclusive and accessible health promotion, people with IDD are experiencing a constellation of health issues related to negative determinants of health. This article aims to raise awareness among nurse practitioners that people with IDD need support from their health care providers to be physical active. A secondary aim is to discuss barriers and resources for people with IDD to be more physically active.
Owen, R., Bowers, A., Heller, T., Hsieh, K. and Gould, R. (2016). The impact of support services teams: Community-based behavioral health support interventions. Journal of Policy and Practice in Intellectual Disabilities. doi:10.1111/jppi.12186.
Background: Community capacity to serve people with intellectual/developmental disabilities (IDD) and behavioral health challenges is often limited. Using interdisciplinary teams to work with stakeholders, including people with IDD, their families, providers, and agencies may help increase this capacity. One example in the United States is the Support Services Teams (SST) program of a midwestern state. Specific Aims: This research aimed to identify changes before to after referral to SST in the proportion of people who used and the total number of admissions/visits, and prescriptions; and the Medicaid liability associated with emergency room (ER), hospital, and pharmacy services for SST participants. Second, the research described the SST participants and services provided. Method: The authors used Wilcoxon and McNemar’s tests to compare hospital, ER, and pharmacy outcome measures for 109 people who were referred to SST and had 12 months of data before and after referral. Separate analyses were also conducted for the 88 people who remained in the community after referral and the 21 people who had short institutional stays. Findings: For the full population of SST participants, the proportion of people with a hospital admission, the total number of hospital admissions, and Medicaid liability for hospitalizations significantly decreased from before to after referral to SST. Medicaid liability for prescriptions significantly decreased for people with an institutional stay. Changes in the other outcomes trended downwards, although not significantly. Discussion: This study shows that the use of interdisciplinary teams for people with IDD and behavioral health challenges can be effective in reducing the use of services. These teams can help to build community capacity to work with these individuals and avoid more costly ER and hospital services and reduce the number of medications prescribed.
Carli Friedman, Aleksa L Owen
Siblings of disabled peoples’ attitudes toward prenatal genetic testing and disability: A mixed methods approach. Disability Studies Quarterly, 36(3).
We used the phenomenon of prenatal genetic testing to learn more about how siblings of disabled people understand prenatal genetic testing and social meanings of disability. By interweaving data on siblings’ conscious and unconscious disability attitudes and prenatal testing with siblings’ explanations of their views of prenatal testing we explored siblings’ unique relationships with disability, a particular set of perspectives on prenatal genetic testing, and examined how siblings’ decision-making processes reveal their attitudes about disability more generally. In doing so we found siblings have both personal and broad stakes regarding their experiences with disability that impact their views.
Carli Friedman and Mary C. Rizzolo (2016)
Un/Paid Labor: Medicaid Home and Community Based Services Waivers That Pay Family as Personal Care Providers. Intellectual and Developmental Disabilities: August 2016, Vol. 54, No. 4, pp. 233-244.
Correspondence concerning this article should be addressed to Carli Friedman, Disability and Human Development, University of Illinois at Chicago, 1640 W. Roosevelt Road, M/C 626 Chicago, IL, 60608 USA (e-mail: firstname.lastname@example.org).
This paper was sponsored in part by a grant from the Administration on Intellectual and Developmental Disabilities (90DN0296).
The United States long-term services and supports system is built on largely unpaid (informal) labor. There are a number of benefits to allowing family caregivers to serve as paid personal care providers including better health and satisfaction outcomes, expanded workforces, and cost effectiveness. The purpose of this study was to examine how Medicaid HCBS Section 1915(c) waivers for people with intellectual and developmental disabilities allocate personal care services to pay family caregivers. Our analysis revealed about two thirds of waivers in fiscal year (FY) 2014 allowed for family caregivers to potentially be paid for personal care services. This amounted to up to $2.71 billion of projected spending, which is slightly more than half of all personal care service expenditures in FY 2014.
January 5, 2016
This study investigated the extent of racial and ethnic disparities in the health of adults with intellectual and developmental disabilities. Analyzing data from the 2002-2011 Medical Expenditure Panel Survey and the 2000-2010 National Health Interview Survey, we found that Black and Latino adults with intellectual and developmental disabilities have markedly worse health in contrast to their white peers with intellectual and developmental disabilities. Included in the document is an analysis of policy opportunities around health disparities, including obesity prevalence, among adults with intellectual disabilities.
Sandra Magana, Department of Disability and Human Development at the University of Illinois at Chicago (UIC-DDHD)
Susan Parish, Rehabilitation Research and Training Centers on Developmental Disabilities and Health at the Lurie Institute for Disability Policy, The Heller School for Social Policy and Management, Brandeis University (Lurie Institute)
Miguel Morales, UIC-DDHD
Henan Li, Lurie Institute
Glenn Fujiura, UIC-DDHD
The policy opportunity analysis was authored by
Ben Jackson, Association of University Centers on Disabilities (AUCD)
Adriane Griffen, AUCD
August 3, 2016
One out of every three adults aged 65 years or older in the general population falls at least once each year. For adults with intellectual disability (ID), the prevalence of falls is even higher with studies estimating a fall rate ranging from between 29% to 70%. Falls are a major cause of serious injury and hospitalization, and an important public health concern. Using baseline data from the Longitudinal Health and Intellectual Disability Study, we examined the prevalence of falls and potential risk factors for falls in adults with ID.
Kelly Hsieh, Department of Disability and Human Development, University of Illinois at Chicago
James H. Rimmer, Civitan International Research Center and Sparks Clinics, University of Alabama at Birmingham
Tamar Heller, Department of Disability and Human Development, University of Illinois at Chicago
Jessica Minor, Association of University Centers on Disabilities, Silver Spring, MD Christine Grosso, Association of University Centers on Disabilities, Silver Spring, MD
Burke, M. & Heller, T. (2016) Individual, parent and social–environmental correlates of caregiving experiences among parents of adults with autism spectrum disorder. Journal of Intellectual Disability Research, 60 (5), pp 401–411. doi: 10.1111/jir.12271
Compared to parents of adults with other types of disabilities, parents of adults with autism spectrum disorder (ASD) experience worse well-being. Thus, it is crucial to identify the individual, parent and social–environmental correlates of caregiving experiences among parents of adults with ASD. For this study, 130 parents of adults with ASD responded to a survey about caregiving satisfaction, self-efficacy and burden. Greater future planning and community involvement related to more caregiving satisfaction and increased caregiving self-efficacy, respectively. Less choice-making of the adult with ASD related to greater caregiving satisfaction and self-efficacy. Maladaptive behaviours and poor health of the adult with ASD related to greater caregiving burden. Implications for policymakers, practitioners and future research are discussed.
Rubin, I.L., Merrick, J., Greydanus, D.E., Patel, D.R. (Eds.) (2016), Health Care for People with Intellectual and Developmental Disabilities across the Lifespan
A new book has been published that offers a unique lifespan approach on health care for people with intellectual and developmental disabilities. It addresses the clinical as well as the systems of delivery of health care. It also provides a practical approach to dealing with the health and well-being of people with intellectual and developmental disabilities.
Chapters written by researchers of the Rehabilitation Research and Training Centre on Developmental Disabilities and Health include the following:
Kruti Acharya, Abigail Schindler and Tamar Heller:
Aging: Demographics, Trajectories and Health System Issues, pp 1423-1432.
Healthcare Financing, pp 177-183
David Erwin and Brian Hennen
Community Healthcare, pp. 229-241
James Rimmer and Kelly Hsieh
Health Promotion, pp1087-1103