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Transforming care: how can progress be improved?
- Author:
- BUNN Jonathan
- Publisher:
- Association of Directors of Adult Social Services
- Publication year:
- 2020
- Pagination:
- 8
- Place of publication:
- London
The paper aims to highlight local government and housing provider perspectives on the challenges in the current Transforming Care system. The ambition set out in the Building the Right Support plan was to significantly increase the pace of systemic change by shifting funding from inpatient services to community support though a new financial framework. This aimed to encourage Transforming Care Partnerships (TCPs) to reach agreement on how to invest the money available across local systems to facilitate discharges from hospital and reduce admissions. However, the limited progress in reducing the numbers of people receiving inpatient care suggests these arrangements have not been consistently effective. Some of the challenges identified in this report include: the supply of suitable accommodation; the impact of regulation; access to capital funding; the difficulty of finding alternative settings for those individuals with the most complex needs and challenging behaviour, particularly as their circumstances have also led to them becoming institutionalised; workforce capacity; and a leadership capable of providing a clear, assertive and ambitious narrative. The report makes a series of recommendations, including establishing a clear collective understanding on how funding for Transforming Care will move down from the government and through CCGs and local authorities. This would help streamline the discharge process and ensure individuals receive appropriate community-based support. (Edited publisher abstract)
NICEimpact children and young people’s healthcare
- Author:
- NATIONAL INSTITUTE FOR HEALTH AND CARE EXCELLENCE
- Publisher:
- National Institute for Health and Care Excellence
- Publication year:
- 2020
- Pagination:
- 22
- Place of publication:
- London
This report highlights progress made by the health and care system in implementing NICE children and young people guidance. Children and young people make up 21 per cent of the population of England, 23 per cent of accident and emergency department attendances and up to 30 per cent of GP attendances. The report looks in particular at the impact of guidelines on managing infections in children; managing long-term conditions in children in the community; the learning disability health check programme; transition from children’s to adults’ services; and innovative technologies for childhood conditions. The report shows that while health check rates for people with disabilities have increased overall, less than 50 per cent of children and young people receive them. It also suggests that there is room for improvement in the provision of child to adult transition services but progress is being made: 35 per cent of local authorities gave their transition services for young people with autism a good rating; 36 per cent of adults with autism said they were fully involved when they went through the transition to adult service; 78 per cent of general or mental health hospitals had a framework to facilitate continuity of patient care at the point of transition from child to adult mental health services. (Edited publisher abstract)
Mapping out a better future
- Journal article citation:
- Learning Disability Today, 13(6), November/December 2013, pp.16-17.
- Publisher:
- Pavilion
- Place of publication:
- Hove
A mother with two sons with autism and learning disabilities became increasingly frustrated with the long process of referral and assessments as they made the transition from children's to adult services, that she created her own resource tool. The 24/7 Grid is a practical visual resource than enables a vulnerable person to participate in designing, understanding and influencing the services they receive. It presents a visual representation of daily activities - when a person can be fully independent, when they need supervision, or when they need a lot of help. Examples are also provided where the Grid indirectly helped to save money. (Original 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.
Putting people at the heart of social work: lessons from the Named Social Worker Programme
- Authors:
- INNOVATION UNIT, SOCIAL CARE INSTITUTE FOR EXCELLENCE
- Publishers:
- Innovation Unit, Social Care Institute for Excellence
- Publication year:
- 2018
- Pagination:
- 54
- Place of publication:
- London
This guide explores lessons for practice from the Named Social Worker (NSW) programme, which piloted new social work approaches to improve outcomes and experiences for people with learning disabilities and/or autism and for the people around them. Through the initiative, people were assigned a named social worker who could build a trusting relationship with them, advocate on their behalf and coordinate their care and support in a more holistic and person-centred way. The guide makes the case for ‘better social work practice’, drawing on the learning and emerging evidence from NSW programme sites; identifies common principles and enablers of ‘good social work’ and what this means for people with learning disabilities; It also provides advice on developing an evaluation approach that captures the qualitative and quantitative impact of different ways of working. The appendix includes tools and case studies from the pilot sites. (Edited publisher abstract)
Differential vocational rehabilitation service patterns and outcomes for transition‐age youth with autism
- Authors:
- KAYA Cahit, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 31(5), 2018, pp.862-872.
- Publisher:
- Wiley
Background: It is important to investigate receipt of vocational rehabilitation (VR) services, service patterns and outcomes for youth with autism, so that limited public resources can be used more efficiently. Method: This study used chi‐squared automatic interaction detector, and multivariate logistic regression analysis to investigate relationships between demographic variables, receipt of VR services and employment outcomes for transition‐age youth (TAY) with Autism. Results: The results indicate that gender, education level and cash benefits are significant predictors of employment outcomes. After controlling for the effect of demographic variables, several VR services (i.e., job placement, on‐the‐job support, on‐the‐job training, maintenance, other services, information referral, and diagnostic and treatment services) were significantly associated with competitive employment. Conclusions: Overall, the results indicate that job‐related services were significantly related to employment outcomes for TAY with Autism; therefore, it is important these youths are provided with more targeted job placements and supported employment services (Wehman et al., 2014). (Edited publisher abstract)
Out of school and into distress: families of young adults with intellectual and developmental disabilities in transition
- Authors:
- McKENZIE Katherine, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 30(4), 2017, p.774–781.
- Publisher:
- Wiley
Background: The transition period out of the educational system can be a source of stress for parents of young adults with intellectual and developmental disabilities, as families lose the support and respite offered by schools. Materials and Methods: Using a before and after design nested within a 24-month follow-up study of parents seeking adult developmental services for their children, parents' perception of distress was measured using the Brief Family Distress Scale (Journal of Child and Family Studies, 20, 2011, 521) and their perception of helpfulness of formal supports was assessed using the Family Support Scale (Journal of Individual, Family, and Community Wellness, 1, 1984, 45). Results: Parents reported significantly higher levels of distress after their child transitioned out of school. Employed parents and parents of a child with an autism spectrum disorder are at increased risk for distress. Conclusions: Families fare worse once their adult children are no longer in school, although this is not associated with a reduction in the perception of the helpfulness of formal supports. (Publisher abstract)
‘Transitions are scary for our kids, and they're scary for us’: family member and youth perspectives on the challenges of transitioning to adulthood with autism
- Authors:
- CHEAK-ZAMORA Nancy C., TETI Michelle, FIRST Jennifer
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 28(6), 2015, pp.480-560.
- Publisher:
- Wiley
Background: Adolescents with autism spectrum disorder (ASD) face many challenges as they age into adulthood. Because little is known about the perspectives of caregivers and youth during this critical transition, this study explored their social, educational, and vocational needs and experiences. Method: Two focus groups were conducted with youth with ASD (n = 13) and two focus groups were conducted with their caregivers (n = 19), where theme analysis strategies derived from Grounded Theory were utilised to identify themes. Results: Both groups experienced fear and anxiety about transitioning, unmet needs were also high, leaving caregivers struggling to fill gaps. Most caregivers and youth reported lacking individualised services. Caregivers faced difficulty in motivating youth and creating opportunities for education and employment. Although youth have future goals, they were unaware of steps needed to accomplish them and hesitant to talk to caregivers. Conclusions: Findings indicate considerable unmet needs for caregivers and youth with ASD. Perspectives of both groups should be considered when developing programmes and educating providers. (Edited publisher abstract)
GROW a programme to enable transitioning to community living
- Authors:
- WENER Pamela, et al
- Journal article citation:
- Good Autism Practice, 10(1), May 2009, pp.68-72.
- Publisher:
- British Institute of Learning Disabilities
The Gaining Resources Our Way (GROW) programme is a two-week, life skills programme for young adults (18-24 years), with developmental and cognitive difficulties, including Aspergers syndrome and autism. Its purpose is to support the development of skills required for independent (or semi-independent) living). The Programme focuses on four key areas: life management, healthy eating, recreation and socialisation. The author suggests that there are few examples of similar transitions programmes in the literature which are well planned and person or family centred. The conception, development and implementation of GROW is described. The authors conclude that with vision, partnership and collaboration innovative programmes such as GROW can fill a gap in services for young adults and practitioners in other countries may wish to consider whether the model can be applied outside Canada.
Factors that affect the physical and mental health of caregivers of school‐age children and transitioning young adults with autism spectrum disorder
- Authors:
- LEE Gloria K., SHIVERS Carolyn M.
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 32(3), 2019, pp.622-634.
- Publisher:
- Wiley
Background: Although studies have examined quality of life (QOL) among family caregivers of individuals with autism spectrum disorder (ASD), little is known about potential differences in QOL based on the age of the individual with ASD, particularly in relation to caregivers’ needs, beliefs and coping mechanisms. Method: This study investigated 132 caregivers of school‐age children and 61 caregivers of transitioning young adults with ASD on measures of caregiving, strain, coping, family needs and QOL. Results: The results indicated that there were no significant differences in QOL based on the age of the individuals with ASD, although parents of children reported significantly more caregiving behaviours, with coping, internalized strain and health information needs predicted mental health QOL. Discussion: Age of the individual with ASD was not significantly related to caregivers’ QOL. More research is needed to determine independent predictors of caregiver QOL across the lifespan. (Edited publisher abstract)