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

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.

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.

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.

My Life Book is designed to help families with an adult child with developmental disabilities develop a plan for the future. My Life Book is a scrapbook-style workbook that covers the past, the present, and future planning. (My Life Book is available in three formats: 1) Book and DVD & CD-ROM ISBN 1-932969-10-1; 2) video on DVD and printable scrapbook pages on CD-ROM ISBN 1-932969-08-X; 3) printed scrapbook only ISBN 1-932969-07-1). An engaging video follows the stories of four families as they attend a future planning class and begin the process of making important life decisions. The easy-to-use scrapbook-style workbook integrates with the video, providing families with a permanent spot to record important life information.Parents of adult children with developmental disabilities can use this program with their children to create a record of the past and present, of important emergency information, and as a planning tool for the future. Sons and daughters can be active participants in creating My Life Book. This program can also be used by a group leader or instructor to teach a class on future planning for participants in transitional and assisted living programsTopics covered include:- Documenting the past and present - Selecting a key person - Establishing a network of friends - Assuring good housing options - Planning for work and leisure - Making good legal and financial arrangements- Emergency information & planningTopics covered include:- Documenting the past and present - Selecting a key person - Establishing a network of friends - Assuring good housing options - Planning for work and leisure - Making good legal and financial arrangements- Emergency information & planning

Parents who have cared for their adult children with intellectual disabilities will one day face an important issue--who will care for them when they are no longer able? With this book, based on case studies of adults with disabilities and their families, you'll learn how to help families plan for this delicate transition. You'll explore possible services and providers who can take on the parents' role, and you'll discover how to create a network of agency and family supports. This book gives you the facts you need to help families prepare for the future and ensure that individuals with disabilities receive the best transitional supports.

Finding the right residential situation for an adult child with an intellectual disability doesn't have to be overwhelming. Discover the universal consideration most families should face before putting plans in place. This guide helps you make educated decisions to secure the housing that's best for your child and family.