Caring More than Most - Contact

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Key findings

The research shows that there is a marked and unacceptable difference between the quality of life and opportunities available to families with disabled children compared to those without disabilities. Disabled children and their families are at a significant disadvantage in many key aspects of life including their economic situation, health, employment and housing.

641,500

disabled children and young people in the UK

620,000

adults caring for disabled children under 20 years

of age in the UK

When compared with 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 housing

More likely to live in larger households (containing six or more people)

More likely to live in a household with other disabled people.

When compared with other carers, parent carers are:

Twice as likely to care for 100+ hours

per week (24% compared with 12%)

Twice as likely to care for 35+ hours a week

(56% compared with 28%)

More likely to care for more than one person

(20% compared with 15%). This other person included a partner, parent, or another disabled child

More likely to be managing on a low income More likely to feel they have a poor quality

of life, with restricted social and life choices

More likely to report problems with their

own health.

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Contents

Introduction Section 1: Data sources Section 2: Disabled children: numbers and characteristics Section 3: A profile of families with disabled children Section 4: A comparison of parent carers with others

Impact on employment Impact on health and wellbeing Section 5: Policy recommendations Appendix A: Local authority data for children aged 0-15 Appendix B: survey questions on caring and health

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4 5 6 13 16 17 19 21 23 23

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introduction

Contact commissioned the University of Leeds (Dr Lisa Buckner) to conduct this research, in consultation with Dr Sue Yeandle.1

This report presents information on the characteristics of disabled children and young people under 20 years old in the UK, and their families1. It shows their numbers, and also:

? indicates that for many, their health problems or disabilities substantially limit their daily activities

? shows how the patterns of their limitations and poor health differ by gender, ethnicity, age, and according to where they live.

The report shows that disabled children and young people are more likely than others of the same age to live in disadvantaged circumstances in terms of:

? housing ? household economic situation ? their parents' employment status.

The report also shows that parent carers of disabled children are more likely than other carers to:

? be female ? managing on a low income ? feel they have a poor quality of life with

restricted social and life choices, and ? report problems with their own health.

This worrying situation means everyday life is very difficult for many families, and suggests many of the children and their families urgently need access to better support and opportunities.

The report is based on analysis of data from three major official data sources, and presents a true and reliable picture of the lives of families with disabled children across the country. It begins with a description of the data (Section 1) and includes:

? the numbers and characteristics of disabled children (Section 2)

? a profile of their families (Section 3) ? a comparison of parent carers of disabled

children (contrasted with carers of adults with illness/disability and people without any such caring responsibilities (Section 4). ? policy recommendations, based on the report's findings (Section 5)

At the end of the report:

Appendix A provides details of the number and percentage of children with limiting longterm illness (LLTI) in each local authority in England, Northern Ireland, Scotland and Wales. This is available online at .uk/la-numbers

Appendix B provides details of the specific questions respondents asked in the data sources used. See page 23.

1 The main analysis is based on the 2011 Census Sample of Anonymised Records (SAR) (regional) and includes all (usually resident) people aged 0-19 living in households, and their families. Other official data is used as appropriate, with relevant sources indicated.

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s ec t i o n 1 . data s ourc e s

The analysis in this report is based on data from three sources:

1 The 2011 Census of households and people [Census]. This is based on a count of all people in the UK undertaken every ten years. In 2001 and 2011 (only) it included a question asking respondents `Do you look after, or give any help or support to family members, friends, neighbours or others because of either: long-term physical or mental ill-health /disability, or problems related to old age? (Do not count anything you do as part of your paid employment)

2 The Carers in Households in England Survey 2009/10 [CiH]. This had a sample size of 2,401 carers who were identified by asking respondents, is there someone who is `sick, disabled or elderly whom you look after or give special help to'2. (This survey was not undertaken in Wales, Scotland or Northern Ireland.)

3 The Health Survey of England (2012, 2013 and 2014) [HSE], which has a sample size of approximately 10,000 people each year. To create a sample large enough for analysis, three years of data were combined, producing a sample of 4,908 carers. (Although the Welsh Health Survey,

Scottish Health Survey and Health Survey of Northern Ireland included questions on carers, there was no simple method of identifying those caring for children aged under 16 or under 20.)

The Census is an invaluable resource that allows analysis at local level, but is limited in the questions it asks on caring. In the CiH and HSE, which both contain a wide range of questions about carers and their caring situation, every effort is made to achieve representative samples, but scope for local level analysis is limited by the sample size. For this reason, analysis of all three sources has been used to produce as full a picture as possible of disabled children and their families.

2 The Census does not ask those replying `yes' to this question who they support, so we cannot be certain that, (for example) in a household with one person who reports providing such support and one person in poor health or with a LLTI, the adult providing care is referring to care given to that person (although it is very likely that is the case). An official report comparing data produced about unpaid care in 2001 and 2011, using Census data for England and Wales, is available from the Office for National Statistics at . uk//2011censusanalysisunpaidcareinenglandandwales2011andcomparisonwith2001/2013-02-15

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