Inclusion in Englanda short history of progress and challenges

?

• England was one of the first countries to close its large institutions - although the process took 40 years - with the last institution closing in 2010.

• The England's model of deinstitutionalisation was a typical 'early model' with most 'community' provision (a) groups homes + (b) day centres. However groups homes are relatively small.

• Families remain under-supported and reliant on crisis to generate entitlement to support.

• Special schools dominate education process - although there is some support for inclusion. Employment rates are extremely low.

Family or friends

Group homes

Prison (not on books of LA)

Social landlord

Registered care home (in area)

Registered care home (out of area)

Private tenant

ATUs (mostly out of area)

Adult placement

Owner occupier

Registered nursing home

Hospital

Sheltered housing

Sofa surfer

Other

B&B

Emergency hostel

Prison (on books of LA)

Probational

Mobile home

Rough sleeper

Refuge

35,340 people live outside their community (20%)77,470 live in an institutional services or residential care (49%)23,845 have what most people would call their own home (15%)

Why do so few people have their own homes?

Sources:NB This data covers 158,000 people with learning disabilities who have come to the attention of LAs as outlined in Public Health England (2014) People with Learning Disabilities 2013. Data on people in out of area placement is from Na-tional Mental Health Development Unit (2011) In Sight and in Mind - A toolkit to reduce the use of out of area mental health services. London, National Mental Health Development Unit. Plus prison data.

Supported Accommodation

Living with a partner

Living on your own

Living with other relatives

Living with parents

Where people with learning disabilities live in England

Living with 4 or less

Living with between 10 and 5

Living with more than 10

Group home sizes for people with learning disabilities

0 50 100 150 200 250 300 350Residential respite

Domicilary careOutreach

Family placementDay centre

Individual day supportResidential care

Nursing homeResidential colleges

Specialist day servicesGroup homes

24 hour supportInstitutional units

Numbers per service

Typical service use in Lancashire - early 2000s

£0 £50000 £100000 £150000 £200000Residential respite

Domicilary careOutreach

Family placementDay centre

Individual day supportResidential care

Nursing homeResidential colleges

Specialist day servicesGroup homes

24 Hour supportInstitutional units

Prices for different services

Price of services in Lancashire - early 2000s

£0mn. £2mn. £4mn. £6mn. £8mn. £10mn. £12mn.Residential respite

Domicilary careOutreach

Family placementDay centre

Individual day supportResidential care

Nursing homeResidential colleges

Specialist day servicesGroup homes

24 hour supportInstitutional units

Expenditure on services

Expenditure pattern in Lancashire - early 2000s

0%

10%

20%

30%

40%

50%

60%

70%

80%

73% of working age people have a job

Only 7% of people with

learning disabilities have a job

Why do so few people have real jobs?

Community-institutional care is the norm. Citizenship and

inclusion is happening, but still relatively unusual for people with

complex disabilities (15%?).

• Self-directed support or personal budgets is now a much more common response for people with learning disabilities and their families.

• However few services are really working with families flexibly and supportively. It’s mostly a Do-It-Yourself approach which loads all responsibility on to the family.

• Care home services have been excluded from self-directed support (for some reason).

How did we get here?

• Early 1970s - Peak institutional population and era of public scandals revealing institutional abuse with growing family advocacy and campaigning to change policy. Deinstitutionalisation begins - led by professionals and inspired by normalisation.

• Late 1980s onwards - Second wave of de-institutionalisation - supported employment, inclusive education, supported living, self-directed support, person-centred planning, self-advocacy and focus on inclusion.

• 2001 - 2010 - The New Labour “Valuing People” era - broad political support for earlier trends, additional ‘development’ funding An era of consultancy, training and cosy compliance by NGOs - sleepy good intentions.

• 2010 onwards - New abuses and austerity - people with learning disability targeted for cuts. Responsibility for system change avoided by extreme right-wing Government - rise of the scrounger and skiver rhetoric.

Abuse…

• In the last 3 months 25.9% of inpatients had harmed themselves • 21.0% of inpatients had suffered an accident in the last 3

months • 22.2% of people had suffered physical assault in the last 3

months • Physical restraint had been used 34.2% of people in the last 3

months 11.4% had suffered seclusion in the last 3 months • 56.6% of people had been the subject of at least one incident

involving self harm, an accident, physical assault against them, hands-on restraint or seclusion during the last three months

• Antipsychotic medication used regularly or at least once in the last 28 days for 68.3% of the people in the units

Data from a recent UK Government report on institutional services for people with intellectual disabilities

0100200300400500600700800

> 10 yrs5-10 yrs2-5 yrs1-2 yrs6-12 mths3-6 mths0-3 mths

Length of stay for people with learning disabilities in inpatient ‘facilities’ Note that this describes length of stay in a particular institution - people are often moved from place to place and so many people will have been away from home for many years longer than these figues suggest.

[Source: Learning Disability Census, 2013. n=3250]

[Source: Learning Disability Census, 2013. n=3250]

0

300

600

900

1200

1500

£364,000£312,000£260,000£208,000£156,000£104,000£78,000

We spend over £0.5 billion on 3,250 people with learning disabilities in inpatient ‘facilities’ The average cost of one of these institutional and typically abusive places is over £172,000 per year.

…and austerity

Benefits & tax credits

Local gov (England)

Schools

University & business

Policing, justice etc.

Scotland

Energy, envir. culture

Defence

Transport

Wales

N. Ireland

Tax & benefits admin

Where the cuts are targeted

1.8 million people receive

adult social care. 1.3 million people recieve

adult social care

500,000 people cut from adult social care because of cuts by central government

on local government.

...and further cuts are coming.

2009 2013

Cuts to adult social care in England

[Source: ADASS (2014) Budget Survey 2014. ADASS] http://bit.ly/wrong-list

Why has this happened?

• Charities and NGOs are too scared to challenge UK Government - partially this is because of increased financial dependence and real threats.

• An era of subsidies for debt have left majority of UK population scared of threat to job and mortgage - so many are desperate to be led to safety by any strategy and happy to support scapegoating.

• UK law only provides weak and conditional rights and the idea of citizenship and inclusion has little hold on the UK system. There’s been too much focus on ‘policy’ change - too little on real change.

What can we do about it?

• Organise better - (cf. Every Australian Counts) - disability campaigns need to be more universal, united and ambitious.

• Do better - Organisations are capable of much more. They need to break free from the hold of the commissioner & provider split that has blocked innovation.

• Think better - This is about basic rights and the kind of society we want to live in. Citizens have rights and those rights should be protected by constitutional checks and balances.

Find out more:www.cforwr.org