Many adults with intellectual disabilities (ID) now outlive their parents due to their increased lifespan, yet families report low rates of planning for a time in the f uture when they will no longer be able to provide support or care. Although many barriers are known to impede planning, the factors that facilitate planning are less known. The prese nt study examines the effect of a social support intervention on facilitating future planning in a randomized control group pilot study. Parents and guardians of adult children with ID were invited to attend a future planning workshop. All par ticipants attend ed Session I of the workshop, which provided information and resources on future planning. P arents were then randomly assigned for Session II to either the control condition or the intervention condition. Several mixed analyses of covariance (ANCOVAs) were utilized to test the hypotheses. 1) The workshop improved (pre- to post- ) scores on information gathering, deciding on preferences, knowledge, network engagement, and complete d plans in both conditions as predicted, but did not differ between intervention and control conditions, and were not higher in the intervention condition compared to controls at 6-wk follow-up; 2) perceived social support increased from pre-to post-workshop in the intervention condition and decreased for controls, but was not significantly higher for the intervention compared to controls; 3) no effect of time or condition was found on becoming aware, avoiding future, or burden. Findings are interpreted and discussed in terms of their practical implications for improving rates of future planning for individuals with ID.

Seminar paper from the year 2011 in the subject Nursing Science - Nursing Management, grade: 1,0, University of Applied Sciences Bremen (Gesellschaftswissenschaften), course: Internationale und interkulturelle Aspekte der Pflege/ des Gesundheitswesens, International vergleichende Aspekte der Steuerung und Organisation der Gesundheitsversorgung, language: English, abstract: In the paper the author delineates the situation of adults with intellectual disabilities living with their family carers who are not in contact with social services for their personal future plans. Many adults with intellectual disabilities live with their parents and receive the necessary support from them in everyday life. Even today, many grown-ups with intellectual disabilities, who are living with their often very old parents, can hardly be included in the social system. Personal future plans are rarely realized, because the family care arrangements are consolidated in a way that the parents benefit from their children’s presence and are not interested in any changes. A sudden illness or the death of the parents can cause a lot of problems and trouble for their child. The person must deal with different new social situations, which are often very frustrating and overcharging for a person, who lived in a shielded, peaceful family care arrangement. Thus, planning becomes the key to preventing a crisis when family care is no longer achievable because of death or illness. In this case existing knowledge and practice are largely based upon the perspective of professionals. Study findings show that adults with intellectual disabilities are very aware of the need for alternative housing or support in the future and had clear preferences about their future options. The awareness of the unavoidable death or a possible severe illness of family carers reveal the importance of involving adults with a learning disability in planning for their future, as well as supporting them in the case of a bereavement.

This textbook provides nurses, allied health and social care professionals with the background knowledge necessary to support individuals with intellectual disabilities and their families. It is a unique and viable resource which is particularly timely, as recent decades have seen a significant change in the demographics and associated care and support needs of this population. The textbook is laid into four sections to provide a logical structure for the content with chapters developing key topic areas relevant to the field. The introductory section sets the overall context for the book and considers the importance of developing an understanding of intellectual disability as a core concept identifying philosophies and models of service that underpin health and social care across the lifespan. Communication as a basis for caring and the overall concept of person-centred caring in a multidisciplinary context is considered. The second section explores key concepts from birth to adulthood exploring the nature of intellectual disability, the child with intellectual disability and other related neurodevelopmental conditions. The third section explores adulthood to older age and considers specific health care needs, understanding behaviour and other fundamental concepts including mental health, ageing and palliative care. The fourth and final section explores the integration of health and social care addressing such issues as supporting and enabling families, education, employment, and sexuality and relationships. Edited by experienced and widely respected professionals, this textbook is written by international practitioners, educators and researchers who all play critical roles in working with individuals with intellectual disability and their families.

A Comprehensive Guide for Parents and Caregivers As any parent or caregiver of an individual with developmental disabilities can tell you, planning for the future of an adult with intellectual disabilities, Cerebral Palsy, severe autism, or another such condition requires hard work and good advice. While complete independence and self-reliance is out of reach for many adults with developmental disabilities, a productive, stable, and enjoyable life is certainly possible. But government and private support for parents and disabled individualsis scattered and difficult to negotiate. This book is a comprehensive guide to resources you can use to help an adult child or other individual with developmental disabilities for whom you care. The book begins by assessing the quality of life of the adult with a disability. It offers a wealth of suggestions for making that person's life even better. The book then focuses on long-term planning for the individual with a disability and helps answer the question, Who will take care of my child after I'm gone? Learn effective ways to: Assess a disabled individual's strengths and need for support services Develop a plan to for building a busy and productive life Locate good housing and employment opportunities Gather a supportive team of caregivers Advocate for a disabled individual with community agencies

Decades of research have demonstrated that the parent-child dyad and the environment of the familyâ€"which includes all primary caregiversâ€"are at the foundation of children's well- being and healthy development. From birth, children are learning and rely on parents and the other caregivers in their lives to protect and care for them. The impact of parents may never be greater than during the earliest years of life, when a child's brain is rapidly developing and when nearly all of her or his experiences are created and shaped by parents and the family environment. Parents help children build and refine their knowledge and skills, charting a trajectory for their health and well-being during childhood and beyond. The experience of parenting also impacts parents themselves. For instance, parenting can enrich and give focus to parents' lives; generate stress or calm; and create any number of emotions, including feelings of happiness, sadness, fulfillment, and anger. Parenting of young children today takes place in the context of significant ongoing developments. These include: a rapidly growing body of science on early childhood, increases in funding for programs and services for families, changing demographics of the U.S. population, and greater diversity of family structure. Additionally, parenting is increasingly being shaped by technology and increased access to information about parenting. Parenting Matters identifies parenting knowledge, attitudes, and practices associated with positive developmental outcomes in children ages 0-8; universal/preventive and targeted strategies used in a variety of settings that have been effective with parents of young children and that support the identified knowledge, attitudes, and practices; and barriers to and facilitators for parents' use of practices that lead to healthy child outcomes as well as their participation in effective programs and services. This report makes recommendations directed at an array of stakeholders, for promoting the wide-scale adoption of effective programs and services for parents and on areas that warrant further research to inform policy and practice. It is meant to serve as a roadmap for the future of parenting policy, research, and practice in the United States.

Intellectual and Developmental Disabilities provides a unique contribution not currently available in the professional literature by addressing the experiences and perspectives of families living with or raising a child with a disability. Designed for family therapists, social workers, and other helping professionals, it provides empirically-based, practical information for working with families experiencing intellectual and developmental disabilities of a loved one. This book also provides important information for navigating the various professional systems of care with which these families interface: health care providers, early childhood intervention teams, educational systems, the legal system, and financial planners.

This study focuses on parental future planning for adults with intellectual disabilities. In recent years, the need for parents to engage in future planning for their offspring with intellectual disabilities has been increasingly emphasized. Within the literature, a number of approaches to future planning have been identified, including both formalized approaches (i.e., creating clear, explicit, and largely unchanging plans for the future of the individual with an intellectual disability) and more informal approaches (i.e., designating a person or a group of people to oversee the well-being of the individual with an intellectual disability without necessarily providing specific guidelines relating to the individual's future care). Despite growing understanding that parents may approach developing future plans in different ways, to date, research on future planning has largely been focused on exploring formalized, concrete approaches to future planning. Using an Interpretive Description methodology, in which semi-structured interviews were conducted with 28 parents of adults with intellectual disabilities, this study sought to gain a greater understanding of parental future planning in real life practice in the province of British Columbia. Results revealed that while the parents in this study often utilized several future planning approaches -- both formal and informal -- when engaged in planning, they could be classified into two broad categories: Concrete Planners and Informal Planners. In addition, the results of this study also highlight key factors that may distinguish between parents who plan more formally and parents who plan more informally. Overall, these result highlight important avenues for future research and policy and practice; which, ultimately, may lead to important changes regarding how best to support aging parents of adult children with intellectual disabilities as they face the challenging task of planning for the post-parental care phase of their adult child's life.