Getting from here to there: future planning as reported by adult siblings of individuals with disabilities

2021 ◽  
Author(s):  
E. G. Casale ◽  
M. M. Burke ◽  
R. C. Urbano ◽  
C. K. Arnold ◽  
R. M. Hodapp
Keyword(s):  
Adult Siblings ◽  
Future Planning ◽  
Individuals With Disabilities

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

2009 ◽  
Vol 47 (3) ◽  
pp. 208-219 ◽  
Author(s):  
Tamar Heller ◽  
John Kramer
Keyword(s):  
Developmental Disabilities ◽  
Support Groups ◽  
Financial Support ◽  
Primary Caregivers ◽  
Support Needs ◽  
Adult Siblings ◽  
Future Planning ◽  
Factors Influencing ◽  
Caregiving Responsibility ◽  
Future Plans

Abstract 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.

Examining the Relation Between Disability Severity Among Older Adults with Disabilities and Sibling Caregiving

2019 ◽  
Vol 44 (4) ◽  
pp. 224-236 ◽  
Author(s):  
Chung eun Lee ◽  
Meghan M. Burke ◽  
Catherine K. Arnold
Keyword(s):  
Functional Ability ◽  
Family Caregiving ◽  
Severe Disabilities ◽  
Maladaptive Behaviors ◽  
Older Individuals ◽  
Future Planning ◽  
Individuals With Disabilities ◽  
Nonlinear Relation ◽  
Caregiving Roles ◽  
Disability Severity

Given the longer lives of individuals with disabilities and the increasing likelihood of siblings fulfilling family caregiving roles, it is critical to identify correlates of sibling caregiving. Yet, little research has examined the relation between the severity of the disability and sibling caregiving. The purpose of this study was to understand the relation between the severity of the disability (defined as functional ability and maladaptive behaviors) and sibling caregiving, including advocacy and future planning. Adult siblings of older individuals with disabilities ( N = 141) completed a national survey. Results indicated that individuals with less functional ability were significantly more likely to receive greater sibling caregiving, advocacy, and future planning. There was a nonlinear relation with respect to sibling caregiving and functional ability with individuals with severe disabilities requiring disproportionately greater sibling caregiving. Furthermore, there was a nonlinear relation between maladaptive behaviors and caregiving demands such that siblings of individuals with the greatest asocial behaviors reported significantly greater caregiving demands.

scholarly journals The sibling’s perspective: experiences of having a sibling with a learning disability and behaviour described as challenging

2019 ◽  
Vol 24 (3) ◽  
pp. 138-146
Author(s):  
Jennifer Chase ◽  
Peter McGill
Keyword(s):  
Family Relationships ◽  
Personal Characteristics ◽  
Structured Interview ◽  
Adult Siblings ◽  
Term Care ◽  
Individuals With Disabilities ◽  
Content Type ◽  
Interview Methodology ◽  
Sibling Family

Purpose Siblings of individuals with disabilities provide the most long-term care for an individual with disabilities, yet research on their experiences is limited. A majority of previous research focuses on young siblings from a parent’s viewpoint. The purpose of this paper is to investigate the effects of having a sibling with a disability and behaviour described as challenging from adult siblings’ perspectives. Design/methodology/approach Six adult siblings of individuals with intellectual disabilities and behaviour described as challenging were interviewed about their responsibilities pertaining to their sibling, family relationships and the support that had been provided. The study used semi-structured interview methodology based on interview questions from previous research. Findings Siblings described a multifaceted impact on their lives. They attributed aspects of their career choices, personal characteristics and family dynamics to having a sibling with a disability and behaviour that challenges. Siblings stressed the inadequate support that they have received throughout their lives. They are, in a sense, the invisible carers for their sibling but they are perceived by society as just a sibling. Siblings described an optimistic perspective on their lives, even though they expressed the difficulties that they have faced. Research limitations/implications Due to the recruitment process and limited demographic of the participants, the findings may not be generalisable to the general population of siblings of individuals with disabilities. Further research should focus on a broader population. Practical implications This study reinforces the need for more support for siblings of individuals with disabilities in childhood and in adulthood. Originality/value This paper provides perspectives of individuals that have not been fully represented in previous research.

Internationale Aspekte der Verankerung inklusiver Unterrichtskonzepte

2015 ◽  
Vol 43 (4) ◽  
pp. 243-253 ◽  
Author(s):  
Frank Häßler ◽  
Michael Burgert ◽  
Jörg Michael Fegert ◽  
Wencke Chodan
Keyword(s):  
Individuals With Disabilities ◽  
Individuals With Disabilities Act

Der Begriff Inklusion (= Einschluss, Dazugehörigkeit) wird geradezu synonym für die gemeinsame Beschulung von Kindern mit und ohne Behinderung des Lernens, der Sprache, des Körpers und/oder der Seele verwendet. Der vorliegende Artikel behandelt den Stand inklusiver Beschulung in Deutschland sowie internationale Entwicklungen wie die Salamanca-Erklärung der UNESCO, den «Individuals with Disabilities Act» (IDEA) der USA sowie den Stand und ausgewählte Fortschritte im europäischen Raum, insbesondere in Großbritannien, Österreich und Russland. Obwohl aus politischer Sicht die Entscheidung für die Inklusion unumkehrbar anmutet, scheint es bisher keine Einigung über den Weg und Zeitrahmen zur Umsetzung zu geben. So liegt der durchschnittliche Anteil der Schüler mit einem sonderpädagogischen Förderbedarf, die in Regelklassen an Regelschulen unterrichtet werden, bei nur 28.2 % (Grundgesamtheit: alle Schüler mit ausgewiesenem Förderbedarf in Deutschland). Hierfür werden Ursachen analysiert und diskutiert. Daneben erscheint als die vorrangige Frage die nach dem Nutzen für die Betroffenen, da die Perspektive der Betroffenen der Maßstab dafür sein sollte, ob Inklusion als gelungen angesehen wird. Diese Frage kann mit hoher Wahrscheinlichkeit nur bezogen auf einzelne Subgruppen von Behinderten valide beantwortet werden kann. Hier besteht noch erheblicher Forschungsbedarf.

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