Caring More Than Most
Conducted by the University of Leeds on behalf of Contact, using data from the latest Census (2011) finds:
When compared to non-disabled children, disabled children are:
- Twice as likely to live in a home where there is no parent in paid work (34% compared to 17%).
- More likely to live in a lone parent household.
- More likely to live in a household without a car, in a home without central heating and in overcrowded accommodation.
When compared to other carers, parent carers are:
- Twice as likely to care for 100+ hours a week (24% compared with 12%).
- More likely to have financial difficulties (36% compared 21%).
- More likely to report problems with their own health.
Caring More Than Most highlights a marked and unacceptable difference between the quality of life and opportunities available to disabled children and their families compared to those without disabilities.
Between May – July 2015, nearly 2,000 people completed our survey on access to support for families with disabled children. The results of the survey include key findings on waiting times.
- 69 per cent of respondents never receive help caring for their disabled children outside their close friends or family.
- 43 per cent never receive help from close family or friends.
- 59 per cent have never had a carer’s assessment.
- A third of disabled children are waiting over a year to get access to mental health services.
GP involvement in disabled children’s care, 2011
A survey of over 1,000 families with disabled children in England about GP support for disabled children. The aim of the survey was to gather family views and make recommendations on the NHS reforms in England.
- 76 per cent don’t visit the GP about their child’s disability or condition.
- For those that do visit the GP with their child, the quality of care is inconsistent.
- Almost three quarters (73 per cent) say that their GP never offers them support in their role as a carer.
The bottom line – what do parents want from the continence supplies service for children and young people in Wales? 2007 [PDF]
This report is based on responses to questionnaires completed by parents in Conwy and Denbighshire. The aim of the report was to highlight the problems faced by families of children and young people who use continence supplies.
- Continence supplies services are not consistent across Wales, and some families get a much better deal than others.
- Any policy should place the dignity of service users and respect for them as core values.
- Continence supplies should be allocated on a needs basis and not rationed, and they should be free for children.
This report describes the findings of a two-month consultation exercise on the theme of access to dentistry in families where there are one or more disabled children. The consultation involved a web-based survey and a request for parents’ qualitative stories.
- 60 per cent of parents are satisfied with the NHS dentistry services their child receives.
- 32 per cent have problems finding an NHS dentist sympathetic to the needs of disabled children.
- 38 per cent said their child had never received dental care at hospital, care from a community dentist at school or home, or care from the community dental service at a clinic.
Childcare, Play and Leisure
In 2017 we engaged independent researchers, Fiveways, to evaluate our early years workshops (now known as Brighter Beginnings).The evaluation, carried out in 2017 and 2018, found that:
- Almost all (94 per cent) of parents felt that the programme made a positive difference to them and their family.
- Workshops had a positive practical influence on parents who increased their take-up of services and financial benefits.
- The proportion of parents who felt alone reduced by half, with many parents attributing workshop attendance to feeling more supported, confident and more ‘in control’.
Getting support early on through our Brighter Beginnings workshops can be the difference between flourishing and floundering for many families with disabled children. Read the shorter executive summary [PDF] to find out more.
Supported by Contact a Family Wales, this report on play and leisure services looks at the experiences of more than 70 disabled children and young people and interviewed a range of providers.
- The majority of disabled children participate in a limited number and range of activities.
- Disabled children and young people face barriers to leisure, including lack of provision, poor access and negative attitudes.
- Key to success is a rights-based approach, energetic staff and volunteers, and funding.
A survey of 1,085 families’ experiences of accessing play and leisure services in the UK and how services have changed as a result of parent involvement.
- 68 per cent of parents are apprehensive about taking their child out because they were made to feel uncomfortable.
- 55 per cent of parents have to travel out of their local area to find suitable facilities.
- 64 per cent of parents said their experiences would be helped by staff being better trained.
As part of our involvement in Early Support (which aims to improve the lives of children with additional needs and their families), we wanted to find out about the role parent groups play in supporting families across Wales. This report presents the findings of a parent support group survey.
- The overwhelming majority of parents reported a positive experience of attending support groups.
- Barriers to attending groups include a shortage of groups in the area and inaccessible meeting times.
- Government initiatives such as Early Support, Families First and Flying Start could improve the outcomes for families.
A place of my own: a study of disabled young people’s transitions to independent living, 2009 [PDF]
This joint research with Shelter Cymru aimed to establish the key barriers that disabled young people face in making the transition to independent living in Wales, with a particular focus on how these barriers might be overcome through the effective provision of information and advice.
School when you are on wheels – Young wheelchair users in Wales: a snapshot of challenges and experiences in education, 2008 [PDF]
With Barnardo’s Cymru and Whizz-Kidz, we looked at how using a wheelchair can affect a child or young person’s education. We asked some of the parents and young people we work with to tell us their experiences of using wheelchairs in the school setting.
- Many children and young people encounter difficulties accessing the appropriate wheelchair.
- Children and young people who use wheelchairs can encouter difficulties with school activities, such as trips and playtimes.
- The fact a child or young person uses a wheelchair is often the over-riding consideration when it comes to choosing a school.
Wheelchair services for children and young people in Wales, 2007
This report highlights the key issues around wheelchairs raised by families in Wales. Our aim was to find out major areas of concern and look at how the National Service Framework for Children, Young People and Maternity Services have impacted services in Wales.
- Over 80 per cent of families waited longer than the NSF target of 6 weeks for an assessment; over 60 per cent waited longer than 8 weeks.
- Review, repair and maintenance of wheelchairs varies from family to family and from area to area.
- Parents highlighted the need for training in the use of wheelchairs for themselves and their children.
This report, published by Contact a Family Wales and Shelter Cymru, looks at families’ experiences of accessing Disabled Facilities Grants (DFG) in Wales and aims to identify issues face by families trying to do access housing adaptations.
- Since 2004 there has been a steady decrease in the average completion times for DFGs for children in Wales.
- Approximately 80 per cent of parents believe there is insufficient information on who can apply for a DFG.
- 40 per cent of parents had ‘generally good’ DFG experiences, but 60 per cent had experiences classed as ‘generally bad’ or ‘mixed.’
This report focuses on the services and resources available for disabled children in Scotland. It includes a map of local authority statistics on disabled children services and provides a starting point for considering how to plan, design and deliver services and support in the future.
- In relation to education, employment and training, outcomes are poor for young disabled people who have been looked after.
- The take-up of self-directed support for disabled children and young people remains low.
- There is a disproportionate number of school exclusions among disabled children.
A full report on all the projects, research and policy work conducted by the fSDC Liaison Project over the past three years, including work on the missing millions campaign.
- Outcomes of the project include empowering disabled children and their families to engage confidently and all levels.
- The project has helped to remove barriers that exist for disabled children, parents and families.
- The project had clear outcomes in the development of partnership working and working effectively with the Scottish government.
The Diary Project, run in partnership with Perth YMCA, enabled parents and family members to share their experiencesa of being part of a disabled family. A few of the participants contributed to a complenting DVD highlighting the merits of blogging.
- The blogs and diaries provided valuable information to inform developments or changes in different policy areas.
- Social media offered accessible avenues for people whose voices have previously been overlook to share their experiences.
- Decision makers were given a route to hearing the voices of disabled childrem and their families.