Search results for ‘Subject term:"learning disabilities"’ Sort:
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A survey of complex trauma in families who have children and adults who have a learning disability and/or autism
- Authors:
- BAKER Peter, et al
- Journal article citation:
- Advances in Mental Health and Intellectual Disabilities, 15(5), 2021, pp.222-239.
- Publisher:
- Emerald
Purpose: There is an established literature supporting the idea that families who have children and adults who have a learning disability and/or autism have a greater vulnerability to mental health problems or poor psychological health. There are shortcomings in this literature in that there is a little consideration of the impact the families interaction with services has on their well-being. It is argued that complex post-traumatic stress disorder (CPTSD), with its focus on prolonged chronic exposure to trauma experiences and the recognition that this can occur in adulthood, may well be an appropriate framework to enable a better understanding of the experiences of families. Design/methodology/approach: A total of 214 family members completed a co-produced online survey in relation to potential traumatic events, impacts and support. Findings: The experiences of family carers of children and adults with a learning disability and/or who are autistic would appear to be multi-layered and complex, with many experiencing a wide range of traumatic events with the associated emotional and personal sequela. The reported responses are consistent with CPTSD with 10% of having received a diagnosis of PTSD. Their experience was that the system failed not only to provide support but also created additional trauma. Practical implications: A trauma-informed approach needs to be adopted by agencies and professionals that serve families to ensure they understand their potential contribution to the trauma families experience. Originality/value: To the best of the authors’ knowledge, this is the first study that has attempted to examine the experience of families using the framework of CPTSD. (Edited publisher abstract)
Family fall-outs and how to avoid them
- Author:
- SCOWN Steve
- Journal article citation:
- Learning Disability Today, April 2010, pp.26-27.
- Publisher:
- Pavilion
- Place of publication:
- Hove
The families of people with learning disabilities and autism often complain of feeling unimportant and left out when service providers get involved. Their impression can be that important decisions are made without their involvement, and that all their years of love and intimate knowledge go unnoticed and unheard. Professionals have as their priority the well-being of the person at the centre, not their family, and may even see the parents and families as meddlers. This article argues that most family members are just trying to do the best for their relative, and that most people with learning disabilities will benefit from having their family actively involved in their lives and forming an integral part of their support team. The article discusses the challenges of how to develop a family-friendly approach which involves a cultural shift in services and different ways of working with families, and also the need to adapt to the changing social market that personalised support has introduced and proactively engage with families. It describes a family reference group, Forward with Families, set up by the support provider Dimensions, in order to assist in developing and implementing a whole organisational approach.
Autism 24/7: a family guide to learning at home and in the community
- Authors:
- BONDY Andy, FROST Lori
- Publisher:
- Woodbine House
- Publication year:
- 2008
- Pagination:
- 177p., bibliog.
- Place of publication:
- Bethesda, MD
If your son or daughter is over-stimulated by noisy places or has trouble communicating or interacting with people, then everyday activities like going to the playground or helping out with household chores may seem outside your child's repertoire. The authors, founders of the award-winning Pyramid Approach to educating children with autism, show how it is possible to keep family life running smoothly and teach a child with autism to participate in important and routine family activities at home and in the neighbourhood. And their teaching strategies can be used during the course of everyday life without making too many adjustments or converting your home into a school. In a reassuring, easy-to-read style this book encourages parents to pinpoint times when their child's behaviour or lack of skills seems to interfere with family functioning. This step helps identify what to teach your child and what goals to set. Other issues related to What To Teach include: Motivational strategies and powerful reinforcements - using naturally occurring rewards and token systems; teaching functional communication skills - the difference between imitation, responding, and initiating communication, as well as how to resolve different types of communication challenges; and, creating opportunities for learning - determining the steps to teach a particular skill and a routine where you can incorporate teaching the desired skill. Issues related to How To Teach include: Teaching techniques: how to choose prompts (verbal, visual, physical, gestural) and how to eliminate them; shaping (rewarding gradual improvement); and, video modelling; managing challenging behaviour: knowing when to teach a new behaviour versus when to change the environment; and, evaluating what you are doing: how to measure progress and collect data. "Autism 24/7" gives families confidence and concrete tools to integrate their child with autism into life at home and in their community as much as possible.
Family carers managing personal budgets for adults with learning disabilities or autism
- Authors:
- TURNPENNY Agnes, et al
- Journal article citation:
- British Journal of Learning Disabilities, 49(1), 2021, pp.52-61.
- Publisher:
- Wiley
Background: There are a growing number of people with learning disabilities and autism who access personal budgets in the form of direct payments in England. Although they are often involved in decisions about their support, personal budgets are usually managed by someone else, typically a parent. This study examined the experiences of carers who manage personal budgets for adults with learning disabilities or autism with a particular focus on the challenges of securing suitable support and implications for their own well‐being. Methods: This was a qualitative study using a descriptive phenomenological approach to investigate the lived experiences of family carers who manage personal budgets. We conducted semi‐structured interviews with 13 family carers. Interview transcripts were thematically analysed using the framework approach. Results: Our analysis identified five main themes. The first theme relates to why carers decide to take up a personal budget in the first place and their initial expectations. The second theme, restricted choice, highlights the difficulties in securing adequate support and services in the context of what are often described as “complex needs.” The third and fourth themes relate to the tasks involved in managing a personal budget and the challenges associated with the dual role of the carer as a parent and a “professional.” The fifth and final theme, mixed emotions, describes the impact on the subjective well‐being of carers. Conclusions: Family carers indicated that the benefits of personal budgets outweighed the difficulties and stress inherent in managing them. They need adequate support to ensure that personal budgets deliver personalised and self‐directed support and greater well‐being, and are sustainable arrangements. (Edited publisher abstract)
The impact of four family support programmes for people with a disability in Ireland
- Authors:
- DALY Louise, et al
- Journal article citation:
- Journal of Intellectual Disabilities, 19(1), 2015, pp.34-50.
- Publisher:
- Sage
- Place of publication:
- London
Background: This article reports on an evaluation of four family support programmes in Ireland for families of people with a physical or an intellectual disability or autism. The focus of the evaluation, which took place within a year of the programmes’ completion, was on establishing whether the programmes had an impact on families’ capacity to effectively support their family member. Method: A mixed-method design was used, which included a survey (n = 38) and interviews (n = 19) with participating family members. Ethical approval for the study was given by the relevant university ethics committee. Results: Findings suggest that participation in the programmes enhanced knowledge, attitudes, and competencies of families and also impacted their ability to advocate for their family member and to connect with the community. Discussion and conclusions: Whilst outcomes were overwhelmingly positive, further follow-up would be required to ascertain if sustained capacity building took place. (Publisher abstract)
Family expectations and transition experiences for young adults with severe disabilities: does syndrome matter?
- Authors:
- BLACHER Jan, KRAEMER Bonnie R, HOWELL Erica J.
- Journal article citation:
- Advances in Mental Health and Learning Disabilities, 4(1), March 2010, pp.3-16.
- Publisher:
- Emerald
This study examines the differential impact of young adult diagnosis on families during the period of transition from school to adult life. Two hundred and forty six parents of young adults with severe learning disability, aged 18 to 26 years, participated. The young adults were classified into four diagnostic groups: 30 for autism; 68 for Down's syndrome; 95 for cerebral palsy; and 3 to an undifferentiated learning disability group. The parents were asked questions relating to their expectations of their offspring’s transition to living and working environments post high school, and the parental satisfaction and worries were also assessed. The findings showed that more community expectations of work for young adults with Down's syndrome, and more restrictive expectations for young adults with autism, including more expectations that young adults with autism would move out of the family home into a residential environment. Parents of young adults with autism also worried significantly more about various aspects of transition than other parent groups.
Learning difficulties
- Author:
- WARD Linda
- Journal article citation:
- Research Matters, 2004, 2004, pp.29-36.
- Publisher:
- Community Care
Part of a special issue focusing on the green paper, Every Child Matters, and the Children Bill, which heavily emphasises partnership working. Asks about the impact of multi-agency working on families with children with complex needs and whether services can work better for autistic children. Lists practice points on multi-agency working and support for families with an autistic child, and key points.
A brief respite
- Author:
- TARLETON Beth
- Journal article citation:
- Professional Social Work, September 2002, p.14.
- Publisher:
- British Association of Social Workers
Describes the reality of respite services for children with autistic spectrum disorder.
A COVID-19 guide for carers and family supporting an adult with learning disabilities/autism
- Author:
- SOCIAL CARE INSTITUTE FOR EXCELLENCE
- Publisher:
- Social Care Institute for Excellence
- Publication year:
- 2020
- Place of publication:
- London
A guide to help family members and carers supporting adults and children with learning disabilities and autistic adults through the coronavirus (COVID-19) crisis. The guidance aims to help families keep people with learning disabilities and/or autism safe, and to help them play their part in getting through this national emergency, while at the same time protecting and promoting their quality of life wherever possible. Areas covered in the guide include: staying well; advance planning; Care Act; safeguarding; and death and bereavement. (Edited publisher abstract)
Stopping over-medication of people with a learning disability, autism or both (STOMP): a family carer perspective
- Author:
- CHALLENGING BEHAVIOUR FOUNDATION
- Publisher:
- Challenging Behaviour Foundation
- Publication year:
- 2016
- Pagination:
- 22
- Place of publication:
- Chatham
Reports on the results of a consultation of over 100 family carers on their experience of the prescription of medication for a relative with learning disability or autism for challenging behaviour. The consultation also aimed to identify what information and support family carers currently have access to when medication is suggested or prescribed for their relative. Issues discussed include: prescribing rationale, decision making process, impact of medication, and alternatives to medication. The research found that many family carers welcomed national work to stop the over medication of people with learning disabilities and autism, but expressed frustration at how long change is taking. Many family carers were anxious that their loved ones had been medicated inappropriately and had a range of debilitating side-effects. There was also evidence of a lack of information and advice for family carers regarding medication decisions. The report makes recommendations to reduce the use of antipsychotic and antidepressant medication, some of which are to be taken forward by the Stopping the Over Medication of People with a Learning Disability, Autism or Both (STOMP) NHS campaign to consider. (Edited publisher abstract)