DISABILITIES

Sharing the learning: user-led organisations action and learning sites 2008-2010 (17th March 2010)
This guide describes the background to establishing the user-led organisations action and learning sites, and provides a snapshot of the good practice resources resulting from this project.
Guide

Disabled children's services national indicator 2009-10: Primary Care Trusts reports (March 2010)
A collection of disabled children's services national indicator reports setting out findings for each primary care trust (PCT) area for which there was sufficient response from parents to the 2009-2010 survey to measure parental satisfaction of services for disabled children.

Each report provides indicator and sub-indicator scores, as well as analysis of parents' comments relating to services in each of the following areas: health, education, and care and family support.

There are also comparison Excel spreadsheets for PCTs which allow for easy comparisons between local areas.
Reports

DISABILITIES

Fulfilling and rewarding lives: the strategy for adults with autism in England (3rd March 2010)

The first autism strategy for England will kick-start fundamental change in public services helping adults with autism to live independent lives and find work.

Autism is a lifelong developmental disability and although some people can live relatively independently, others will have high dependency needs requiring a lifetime of specialist care. There are approximately 400,000 adults with ASC in England, around half of whom have a learning disability.

Published on 3 March 2010, the strategy sets a clear framework for all mainstream services across the public sector to work together for adults with autism.

Strategy

DISABILITIES

Aiming high for disabled children: improving data (15th December 2009)
York Health Economics Consortium were commissioned by the Department of Health to explore how data on disabled children is collected, managed and used at a local level. The focus of the research was fieldwork across eight health economies in England, underpinned by a review of peer-reviewed literature. The report of the research project sets out key findings on:

• the definitions of disability used by different agencies and services
• the information about disabled children that is captured.
• how such information is collected and stored.
• how such information is shared.

Report

DISABILITIES

Wave 1 Action and Learning Sites 2008-09 Final report (3rd November 2009)
This report sets out the work and progress made by the 12 user-led organisation (ULO) action and learning sites (ALS) funded as Wave 1 for the period April 2008 - March 2009.
Report

Our family, our future (3rd November 2009)
This new report, from Contact a Family, finds that families with disabled children have the same hopes and dreams as other families but often face bureaucracy and prejudice trying to achieve them. The report features the stories of 30 UK families whose children are affected by a range of disabilities and rare conditions.
Report

DISABILITIES

Parental Experience of Services for Disabled Children - Qualitative Research (Phase 2): Exploring the Findings from the National Survey (24th September 2009)
This research sets out findings from a second phase of qualitative work looking at parental experiences and views of services they use in relation to their disabled child.

The research complements the ‘Parental Experience of Services for Disabled Children - National Survey’, which was published last month.
Report

PATIENT AND PUBLIC INFORMATION

Let's Get Moving - patient resource (24th September 2009)
The Let's Get Moving (LGM) patient pack is designed to support patients in their efforts to become more active and contains helpful hints, practical examples, simple visual tools and personal planning exercises (practitioners might also wish to use the resource to guide patients towards becoming more active).

The pack has templates for relevant local information on indoor and outdoor activity opportunities. These templates should be completed locally, printed and inserted into the LGM patient pack prior to distribution to service deliverers. There is also an online search tool available on NHS Choices. Maps of local walking routes and green space are another supportive tool that can be included in the patient pack: these were very well received by patients in the LGM feasibility pilot.
Resources

Keep Warm Keep Well (24th September 2009)
The latest information to help the public maintain good health during winter.
Poster
Easy Read Leaflet
Guide for people with disabilities or long-term health conditions

Seasonal flu: why you should have the vaccination (17th September 2009)
This years campaign poster and leaflet.
Poster
Leaflet

DENTAL

Guidelines for the Delivery of a Domiciliary Oral Healthcare Service (September 2009)
The British Society for Disability and Oral Health have published these revised guidelines. Some people are not always able to travel to a dental surgery, and for these, access to oral healthcare services is only achievable through the provision of domiciliary oral healthcare.

This document:

• alerts PCTs and service providers to the need for maintaining and increasing the availability of Domiciliary Oral Healthcare Services (DOHCS)
• Provides guidance for the commissioning of high quality DOHCS
• Provides guidance to establish standards for the delivery of high quality DOHCS

Guidance

DISABILITIES

Aiming high for disabled children: delivering improved health services (8th September 2009)
Providing effective health services for disabled children will improve outcomes for them and their families, ensure the child receives the best quality of care and provide better value for money. This report examines best practice around the country. It draws on examples of services for disabled children that meet users’ needs, respond to the government agenda and are effective from both a quality and a cost point of view.
Report

DISABILITIES

Parental Experience of Services for Disabled Children - Qualitative Research (27th August 2009)
This piece of work aimed to explore parents’ experiences and views of the range of services they access and use in relation to their disabled child. Research was intended to identify and explore the factors that underpin and influence experiences and satisfaction levels, with a specific objective to explore perceptions around each of the five ‘core offer’ elements.
Report

Parental Experience of Services for Disabled Children - National Survey (27th August 2009)
The survey was a two stage postal one. A screener questionnaire identified eligible households with a disabled child and they were then sent a second and longer questionnaire which asked about their experiences of services received in the last 12 months across health, education and care and family support service. The survey questions focused on the five core elements - information; transparency; assessment; participation; and feedback.
Survey

DISABILITIES

Safeguarding Disabled Children: Practice guidance (9th July 2009)
This practice guidance makes clear that disabled children have exactly the same human rights to be safe from abuse and neglect, to be protected from harm and achieve the Every Child Matters outcomes as non-disabled children. Disabled children do, however, require additional action.
Guidance

DISABILITIES

Disabled Children & Health (22nd June 2009)
This report, published by Every Disabled Child Matters (EDCM), highlights the failure of the NHS to meet even the basic needs of disabled children.
Report

DISABILITIES

Housing for disabled children and their families: an information resource (15th May 2009)
An overview of information about housing for disabled children and their families, and ideas for improving their circumstances.
The purpose of the resource is to raise awareness of this important aspect of community care and to help non-specialists find out more about promoting positive change in this complex field.
The information resource contains:

• a summary of research evidence about the housing circumstances of disabled children and their families;
• an indication of the role of front-line workers in relation to housing for disabled children and their families;
• potential ways of improving housing, including moving house and adapting a family’s existing home;
• a summary of the relevant law in England;
• a series of case studies to help consolidate and expand knowledge of some of the issues involved; and
• guidance on running workshops to provide information to interested practitioners and families.

Report

What makes my family stronger (20th May 2009)
This report, from Contact a Family (Every Disabled Child Matters partner organisation), states that families with disabled children in the UK feel stigmatised and shut out from society. Key findings from the report include:

• Almost 70% of families with disabled children said that understanding and accpetance of disability from their community or society is poor or unsatisfactory
• Over 60% of families said they don't feel listened to by professionals
• Vital support services such as short breaks; a key worker; and childcare are unavailable to almost half of families
• Over 60% of families said they don't feel valued by society in their role as carers
• Half of families with disabled children said the opportunity to enjoy play and leisure together is poor or unsatisfactory.

Report

ELDERLY/OLDER PEOPLE

Scoping review of the research and evidence base relating to advocacy services and older people's entry into care homes in England (31st March 2009)
The purpose of this review is to scope the literature on advocacy in relation to the decision to enter a care home on a long-term or permanent basis. The review seeks to inform planned work on the development of independent advocacy services being considered as part of the Independent Living Review by the Office for Disability Issues.
Report

DISABILITIES

AskSARA (25th March 2009)
The Disabled Living Foundation (DLF)has relaunched it's award-winning, innovative online guided advice tool AskSARA with a new improved, user friendly design, along with added features and updated content.
Tool

DISABILITIES

Supporting disabled parents: a family or a fragmented approach? (24th February 2009)
This report, from Commission for Social Care Inspection, finds that many councils do not fully support disabled parents and their children. Disabled parents are a diverse group of people and include parents with:

• physical and/or sensory impairments
• learning disabilities
• mental health needs
• drug and alcohol related problems
• long term medical conditions

Report
Summary

DISABILITIES

Update on disabled children's national indicator (28th January 2009)

The government has published an updated briefing and the timetable for its development on the national indicator for disabled children's services (National Indicator 54 - NI54). The indicator will look at parental experience of services for disabled children and young people aged 0-19 and the extent to which these services are delivered according to 'core offer' standards. A draft version of the main stage questionnaire can be accessed here.

Briefing

PARLIAMENTARY PUBLICATIONS

Health Committee - NHS Next Stage Review - First Report of Session 2008-09 (13th January 2009)
Vol I
Vol II

Joint Committee on Human Rights - A Bill of Rights for the UK? Government Response to the Committee's Twenty-ninth Report of Session 2007-08 - Third Report of Session 2008-09 (19th January 2009)

Joint Committee on Human Rights - The UN Convention on the Rights of Persons with Disabilities - First Report of Session 2008-09 (4th January 2009)

DISABILITIES

Counting the costs (28th August 2008)
Families with disabled children are struggling with soaring cost of living and some families are going without basic food and heating. These are the findings of Counting the Costs, a survey and report from Contact a Family, the charity for families with disabled children. Key findings include: One in six disabled children lives in a household struggling to afford food and heating; Almost half of families have borrowed money from friends and family, with one in five using the cash to pay their heating bills; and One in 14 children with a disability or medical condition is living under threat of losing their home. Contact a Family surveyed almost 800 parent carers in the UK about their financial situation in the current economic crisis.
Report

DISABILITIES

Aiming high for disabled children: short breaks implementation guidance (21st July 2008)
Guidance has now been published to support the provision of Short Breaks over the next three years. It should be read in conjunction with other resources for the Aiming High for Disabled Children (AHDC programme). PCTs should consider this guidance in shaping their response to the 2008-09 NHS Operating Framework priorities.
Guidance
Associated documents

DISABILITIES

A guide to the Human Rights Act - A booklet for people with learning disabilities (2nd June 2008)
A revised Guide to the Human Rights Act for people with learning disabilities uses examples from everyday life to help explain what human rights means for them. The booklet was produced by the Ministry of Justice with the help of Working with Words, a specialist supplier of services for people with learning disabilities and low literacy. It uses examples from work, supported housing, day services and dealing with the local council to illustrate how human rights apply to people's everyday lives.
Click here for the Booklet