Adults With Learning Difficulties in England (AWLDE)

NO ONGOING DATA COLLECTION: Adults With Learning Difficulties in England (AWLDE) was a one‑off national survey (2003–04).

Measures describe a question asked to a participant during a survey or an item of information requested from a manager when they fill out a data return. For example, ‘Who do you live with?’ is a measure and the possible responses might be, mother, father, brother, sister etc.

Question/Data item wording	Response scale wording	Need OR provision OR receipt	Description of measure	Start Year	Age of interest	Age from	Age to	Informant	Multiple rater	Reporting term	Sweep title	Standard instrument	Dataset
Have you ever wanted to complain about the support you get?	Yes No	Receipt;	Complaining about support received	2003	16-120	16	120	Participant or carer	No	Current	2003 Sweep	No	AWLDE
Does anyone come into your room without asking or when you don’t want them to? (CIP) Who does this?	Part 1: Yes No Part 2: • Paid support person/carer/staff at residential home • Someone else you live with • Family or friend you DON’T live with • Other (SPECIFY)	Receipt;	Unwanted intrusions by carer	2003	16-120	16	120	Participant or carer	No	Current	2003 Sweep	No	AWLDE
How happy are you with the support you get? Who arranges this support for you? (if necessary–who would you go to if you needed support or help with anything)	Part 1: • Very happy • Quite happy • Not happy Part 2: • Family member • Friend (not paid) • Paid support person/staff at residential home • Social Worker/Care Manager • Key Worker/Care worker • Other(specify)	Receipt;	Happiness with support received	2003	16-120	16	120	Participant or carer	No	Current	2003 Sweep	No	AWLDE
Have people been rude or nasty to you because of your learning difficulty in the last year? Who was rude or nasty to you?	Part 1: Yes No Part 2: • Paid support worker/carer/staff at residential home • Someone they live with (not support worker) • Someone at day centre (not support worker) • Someone they work with • A stranger/someone they did not know • Other(specify)	Receipt;	Bullying - including by support worker	2003	16-120	16	120	Participant or carer	No	Current	2003 Sweep	No	AWLDE
Do you ever go to a day centre? NOTE – find out the name of the day centre to substitute in the next few questions How many days a week do you go to XX?	Part 1: Yes No Part 2: Open response	Receipt;	Use of day centres	2003	16-120	16	120	Participant or carer	No	Current	2003 Sweep	No	AWLDE
Can I just check whether (name of respondent) does receive all of their own benefits, or whether somebody else receives them and manages them on their behalf?	Open response	Receipt;	Management of benefits on behalf of participant	2003	16-120	16	120	Participant or carer	No	Current	2003 Sweep	No	AWLDE
Have you heard of Direct Payments? This is where you get money yourself and you buy the services you need with that money. This is instead of other people choosing things for you Have you applied for Direct Payments Do you get Direct Payments	Part 1-3: Yes No	Receipt;	Receipt of Direct Payments	2003	16-120	16	120	Participant or carer	No	Current	2003 Sweep	No	AWLDE
Do you receive any benefits? IF YES And what benefits do you receive? Do you receive your benefits yourself or does someone else receive them for you? Who gets your benefits for you?	Part 1: Yes No Part 2: • Disability Living Allowance • Severe disability allowance • Income Support • Incapacity Benefit • Housing benefit • Other Part 3: Yes No Part 4: • Parent • Partner • Child • Other relative • Friend • Paid help / professional support person/staff at residential home • Social services • Other	Receipt;	Receipt of benefits	2003	16-120	16	120	Participant or carer	No	Current	2003 Sweep	No	AWLDE
Do you choose how much money you can spend each week? (or does someone else decide how much money you can have?)(adapted from CIP) Do you choose the things you buy with your money? (adapted from CIP) Does someone help you look after your money? Who helps you? Would you like any (more) help with looking after your money? Who from?	Part 1: Yes No Part 2: Yes No Part 3: Yes No Part 4: • Parent • Partner • Child • Other relative • Friend • Paid help / professional support person/staff at residential home • Social services • Other Part 5: Yes No Part 6: • Parent • Partner • Child • Other relative • Friend • Paid help / professional support person/staff at residential home • Social services • Other	Receipt;	IADL- managing money	2003	16-120	16	120	Participant or carer	No	Current	2003 Sweep	No	AWLDE
Do you look after your children/ child? Does anyone help you look after them? Who? How happy are you with the help you receive? Would you like (more) help looking after your child / children? If you needed help, who would you turn to?	Part 1: Yes No Part 2: Yes No Part 3: • Parent • Partner • Child • Other relative • Friend • Paid help/professional support person/staff at residential home • Social services • Other Part 4: • Very happy • Quite happy • Not happy Part 5: Yes No Part 6: • Parent • Partner • Child • Other relative • Friend • Paid help/professional support person/staff at residential home • Social services • Other	Provision;Receipt;	Support with caring responsibilities - children	2003	16-120	16	120	Participant or carer	No	Current	2003 Sweep	No	AWLDE
Does anyone live with you who is old, sick or disabled? IF YES Do you have to look after them? (Amended GHS/HSE) So who is it you look after? What do you do to help them? Does anyone help you look after them? Who helps you? How happy are you with the help you get? Would you like (more) help looking after them? If you needed help, who would you turn to?	Part 1: Yes No Part 2: Yes No Part 3: • Parent • Partner • Child • Other relative • Friend Part 4: • Cooking • Washing / ironing • Cleaning • Shopping • Personal care e.g. personal hygiene, taking to the toilet etc Part 5: Yes No Part 6: • Parent • Partner • Child • Other relative • Friend • Paid help/professional support person/staff at residential home • Other Part 7: • Very happy • Quite happy • Not happy Part 8: Yes No Part 9: • Parent • Partner • Child • Other relative • Friend • Paid help/professional support person/staff at residential home • Social services • Other	Provision;	Caring responsibilities	2003	16-120	16	120	Participant or carer	No	Current	2003 Sweep	No	AWLDE
Does the respondent live in … – Probe if necessary	In fully private household – (with support person or independently) • In supported housing • In residential care • Long stay hospital or retained NHS bed	Receipt;	Accommodation inc. residential care	2003	16-120	16	120	Participant or carer	No	Current	2003 Sweep	No	AWLDE
And do you get any help with (SP)	• Getting dressed in the morning • Putting on a pair of shoes • Having a shower or a bath • Ordering something to eat or drink at a cafe • Drinking a cup of tea • Washing your clothes • Making a sandwich • Filling in a form (for example if you were applying for a job) • Finding out what is on the TV tonight • Paying money into your bank or Post Office • Making an appointment (for example to see your doctor) (SP)	Receipt;	Help completing ADLs and IADLs	2003	16-120	16	120	Participant or carer	No	Current	2003 Sweep	No	AWLDE
I want you to tell me for each thing whether you can do it on your own, or you need a bit of help, a lot of help or someone to do it for you. So first of all …	• Getting dressed in the morning • Putting on a pair of shoes • Having a shower or a bath • Ordering something to eat or drink at a cafe • Drinking a cup of tea • Washing your clothes • Making a sandwich • Filling in a form (for example if you were applying for a job) • Finding out what is on the TV tonight • Paying money into your bank or Post Office • Making an appointment (for example to see your doctor)(SP)	Need;	Ability to complete ADLs and IADLs	2003	16-120	16	120	Participant or carer	No	Current	2003 Sweep	No	AWLDE
Did you get any help from the people at (XXX – name collected earlier) before you moved there? (SP)	Yes No	Receipt;	Help from residential home	2003	16-120	16	120	Participant or carer	No	Current	2003 Sweep	No	AWLDE
Before you moved to where you live now, where did you used to live? (Probe to find out what type of accommodation it was) (if necessary – where did you live before?)	• In fully private household–(with support person/friends or family or independently • In supported housing • In residential care • Long stay hospital or retained NHS bed	Receipt;	Place lived before inc. residential accommodation	2003	16-120	16	120	Participant or carer	No	Current	2003 Sweep	No	AWLDE
How often do you get help from your relatives and (or) friends/paid support person?	• Live in same place • Every day (not resident) • Most days • A few times week • Once a week • Less often	Receipt;	Frequency of help at home	2003	16-120	16	120	Participant or carer	No	Current	2003 Sweep	No	AWLDE
Who helps you [at home]? Is it a relative or friend or a paid support person?	Relative (parent/partner/other family) • Friend • Paid/ professional support person	Receipt;	Person who helps at home	2003	16-120	16	120	Participant or carer	No	Current	2003 Sweep	No	AWLDE
Would you like someone to help you at home?	Open response	Need;	Need of help at home	2003	16-120	16	120	Participant or carer	No	Current	2003 Sweep	No	AWLDE
Does someone help you at home? (i.e. support person)	Open response	Receipt;	Receipt of help at home	2003	16-120	16	120	Participant or carer	No	Current	2003 Sweep	No	AWLDE
Who runs (name of residential accommodation)? (Probe if necessary)	• NHS • Private • Charity/voluntary organisation	Receipt;	Name of residential accommodation	2003	16-120	16	120	Participant or carer	No	Current	2003 Sweep	No	AWLDE

England

Aims

The Adults With Learning Difficulties in England survey took place once between 01 Apr 2003 to 31 Mar 2004. This was the first ever national survey about the lives of people with learning difficulties in England. It was the first time that this type of survey had been carried out anywhere in the world. The survey told policy makers how much more needed to be done if people with learning difficulties were to be more included in their communities and to have a better life. It fulfilled a Government promise (Valuing People, a White Paper 2001) to help people to live full and independent lives as part of their local communities.

Institution

NHS Digital

Geographic coverage - Nations

England;

Start date

2022

Minimum age at recruitment

Sample Size

2,974

Sample

Study design

Cross sectional study

Sample details

Researchers used a BMRB survey to find people in private households with learning difficulties, identifying 1,072 adults and interviewing 750 people. 19 Social Services Departments co-operated with the survey, identifying 675 people with learning difficulties living in private households of which 480 were interviewed. 190 schemes that supported adults with learning difficulties were also identified. 134 schemes said they would help, identifying a total of 822 people of which 562 were interviewed. 340 residential care homes were selected. Of these, 202 said they would help, identifying 1,312 people of which 919 were interviewed. Finally, researchers selected 40 NHS Trusts and asked them to help. Of these, 14 Trusts identified a total of 326 people of which 263 were interviewed.

Sex

All

Sample Characteristics

People with a learning disability

Sample size at most recent sweep

2974

Individual data available (e.g. upon special request)?

Yes

Data Access Level

Fully open source

Data Access

Report Findings

https://files.digital.nhs.uk/publicationimport/pub01xxx/pub01760/adul-lear-diff-eng-03-04-rep-find.pdf

Regional variable present?

Yes

Local Authority variable present?

Yes

Complementary Data

N/A

Genetic Data Collected

Linked Data

HDR UK Innovation Gateway

Website

digital.nhs.uk/data-and-information/publications/statistical/adults-with-learning-difficulties-in-england/adults-with-learning-difficulties-in-england-2003-2004

Notes

Related Measures

Education, Ethnicity and race, Household composition, Housing, Income/household income, Neighbourhood and community, Parenting and family, Physical health assessment, Social security, Social support, Transport services, Work and employment,

Study Code

AWLDE

Reference paper(s)

Report Summary

Funders

DoHSC NHSdigital

Catalogue of Social Care Data

UNITING SOCIAL CARE DATA