the other care crisis - making social care funding work for disabled adults in england

7/29/2019 The Other Care Crisis - Making social care funding work for disabled adults in England

1/52

The oher care crisis:Making social care funding workfor disabled adults in England


2/52

Acknowledgemens

We would like to thank the hundreds o disabled people who have ed their experiencesinto this report through surveys, telephone conversations and in person.

Thanks also go to Sue Brown at Sense, Guy Parckar at Leonard Cheshire Disability,

Sarah Lambert and Ayla Ozmen at the National Autistic Society, Dan Scorer and

Rossanna Trudgian at Mencap and Elliot Dunster at Scope or their insight, comments

and analysis in the drating o this report.

Finally, huge thanks go to Jose-Luis Fernandez, Tom Snell, Julien Forder and Raphael

Wittenberg at the Personal Social Services Research Unit (PSSRU) at the London

School o Economics and Political Science (LSE) or all their hard work modelling

dierent levels o eligibility.

Authors: Ellie Brawn, Marc Bush, Caroline Hawkings and Robert Trotter

Report: Scope, Mencap, National Autistic Society, Sense, Leonard Cheshire

Disability 2013

Modelling: Scope, PSSRU at LSE 2013

January 2013

In the summer o 2012 over 600 disabled adults aged between 18 and 64 took part

in our survey and told us about their experiences o care and support in England.

All quotes in the report come rom the survey and the conversations we have had with

people aterwards.

Some o the statistics used in this report are based on estimates modelled by the

Personal Social Services Research Unit (PSSRU) at the London School o Economics

and Political Science (LSE). For the ull details underpinning our estimates o the scale

and cost o dierent eligibility levels see the accompanying technical report. It is

available at www.scope.org.uk/othercarecrisis

9341 Scope, Mencap, National Autistic Society, Sense, Leonard Cheshire Disability are registered charities


3/52

3

Conens

Chaper hree 41Beyond the crisis

Conclusion 50

Foreword 4

Executive 6summary

Chaper one 11A growing care

crisis

1 Chaper wo 29Disabled peopleat crisis point2

3105,000Over 105,000 disabled people

risk losing out on vital care

and support.

90,000

Since 2008 the number of

people using care has fallen by

at least 90,000, or one in six of all

people using care

28%

This is exacerbated by funding

cuts by 2015 council budgets

will have shrunk by 28%

1.2 billion

Social care for working age

disabled adults is under-funded

by at least 1.2 billion

40%

40% of disabled people

are failing to have theirbasic needs met


4/52

4 Foreword

Foreword

Social care is a critical part o daily lie or tens o thousands o disabled people.

For some, it can mean simply getting out o bed in the morning, making

a home-cooked meal, or being able to communicate with riends and amily.

Importantly, social care also provides the support disabled people need to live actively

and independently: working, studying, or keeping t.

As Amy told us, it is dicult to overestimate how important this can be:

Is abou being able o have he same aspiraions as ohers. I hold down a job, liveindependenly and I am able o live lie in he way I choose. I believe his is a undamenal

righ, bu i has also given me an immense sense o reedom.

But when this support is taken away, it can leave disabled adults distraught,

alone and in crisis.

Our report reveals shocking new evidence o disabled people ailing to be supported

to wash, dress, leave the house and communicate with those around them. It shows

people withdrawing rom society, becoming reliant on riends and amily to provide

care and support, oten driving those relationships to crisis point. Unsurprisingly,levels o stress, anxiety and mental health conditions are rising as a result.

It is clear that a new approach to care and support is long overdue.

In 1948 the National Assistance Act established the National Health Service (NHS) and

set out how the state would support the most vulnerable in society. Twenty-two years

later the Chronically Sick and Disabled Persons Act o 1970 strengthened that support

or some, although many remained without the care they needed.

Since then we have seen 40 years o incremental improvements. But now the care

system is on the verge o breakdown. Chronic under-unding and a clear lack o politicalwill has created a system that ails too many disabled people, too oten.

We have reached a new watershed.


5/52

5Foreword

To its credit, the Government has recognised the crisis and has set out a bold visionor the uture, built around independence and wellbeing or all.

But or the vision to become reality we must make decisions based on a proper

understanding o everyone who uses the system.

The way Britain has been thinking about social care has been dominated by

concerns about the ageing population it is vital that we also recognise the needs

and aspirations o the one in three people who need social care and support who

are under 65.

Without such an understanding, the positive vision the Government is aiming or willbe undermined.

This report attempts to ll some o these gaps in our understanding.

It sets out how the care crisis is playing out or working age disabled people and paints

a vivid picture o the impact on their lives. It provides a detailed, costed solution to the

crisis. And it outlines what the Government must do to ensure that we nally have

a care system that works or all those who need it.

Richard Hawkes, Scope

Mark Goldring, Mencap

Clare Pelham, Leonard Cheshire Disability

Mark Lever, The National Autistic Society

Gillian Morbey, Sense


6/52

6 Execuive summary

Execuive summary

Care and support is vital or people o all ages. But the debate on social care undinghas been almost exclusively about how the system should respond to the demands

o an ageing population.

Important as this debate is, one in three people who use social care services are

disabled people o working age (1) whose needs are not always the same as those

o older people.

As decisions about social care begin to be taken, with the passage o the Care and

Support Bill through Parliament, it is essential that we understand what is distinctive

about the needs o working age disabled people.

For the rst time, this report provides evidence about the size and level o impact

o the social care crisis on working age disabled people. The ndings are shocking:

New research carried out by the Personal Social Services Research Unit (PSSRU)

has ound that, under proposed Government reorms, at least 105,000 working age

disabled people are set to miss out on essential care and support.

This is because the historic underunding o care is being exacerbated by cuts to local

authority unding and leading councils to remove care and support rom all but a

minority o those with the seemingly most complex needs. Since 2008, over 90,000

disabled people have lost care and support. The new Care and Support Bill will makethis trend Government policy.

This is already having a major impact on the lives o disabled people and their amilies.

Four in ten are ailing to have their basic needs met, and underunding is turning back

the clock on disabled peoples independence: nearly hal o disabled adults report

services arent supporting them to get out into the community.

The Government must act now to ensure that disabled people continue to receive the

care and support they need. For just 0.2 percent o public expenditure, we can support

all disabled people to live independent lives o their own choosing, be able to work

and take part in the lives o their communities, and be supported beore reaching

crisis point.

1 Community Care Statistics, Social Services Activity - England, Scope analysis using data rom

2005/06 to 2011 / 2012: http://www.ic.nhs.uk/searchcatalogue?productid=1794&topics=1%2Social+car

e%2Social+care+activity&sort=Relevance&size=10&page=4#top


7/52

7Execuive summary

Chaper one: disabled people alling ou o he care sysemProposed social care reorms have ocused on the needs o older people, but over

105,000 working age disabled people are set to miss out on vital care and support.

Social care or working age disabled adults is underunded by at least 1.2 billion. (2)

At the same time, the number o disabled adults needing care and support

is increasing. In 2010 / 2011, 1.1 million disabled people relied on the social care

system, but by 2020 we anticipate that the number o people in need o care will have

risen to 1.3 million. (3)

The squeeze on unding is being exacerbated by cuts to Local Authority budgets.Between 2010 / 2011 and 2014 / 2015, local authority budgets will have shrunk

by 28 percent, (4) which will be urther compounded by the extra two percent cut

announced in the 2012 Autumn Statement. (5)

These cuts are deeply aecting social care services, orcing councils to reduce the

numbers o disabled people who are eligible or ree care and support. (6)

I social care reorms go ahead as planned, new research shows that at least 36,000

working age disabled people may lose the care and support they currently receive. (7)

A urther 69,000 disabled people will continue to live at crisis point without even a basic

level o care.

This means that i the current reorms go ahead as planned, at least 105,000 working

age disabled people are set to miss out on vital care and support.

The unding crisis is also undermining the quality o care services and holding back

the drive towards more personalised and preventative services.

With continued underunding and little prospect o investment, councils and service

providers will increasingly revert back to more traditional models o service provision,

restricting peoples independence and also the Governments ambitions or the

transormation o care.

2 This is equivalent to the increasing expenditure amongst working age adults as estimated in

Personal Social Services Research Unit (2013) Implications o setting eligibility criteria or adult social

care at moderate needs level: www.scope.org.uk/othercarecrisis

3 Based on estimations in Tables 10 and 11 in Personal Social Services Research Unit (2013)

Implications o setting eligibility criteria or adult social care at moderate needs level: www.scope.org.

uk/othercarecrisis

4 HM Treasury (2010) Comprehensive Spending Review: http://www.hm-treasury.gov.uk/sr2010_

completereport.pd

5 HM Treasury (2012) Autumn Statement: http://www.hm-treasury.gov.uk/as2012_documents.htm

6 Fernandez & Snell, T. (2012) Survey o Fair Access to Care Services (FACS) Assessment Criteria

Among Local Authorities in England: http://eprints.lse.ac.uk/44404/

7 In theory (as drated) the new legislation will allow councils to set eligibility at a level lower than the

minimum threshold, should they choose to, but experience suggests that this unlikely and will fuctuate

with the nancial climate.


8/52

8 Execuive summary

Chaper wo: urning back he clock on disabledpeoples independence

The rationing o care and support has already let many disabled people at crisis

point and the negative impact on their lives is growing.

New evidence rom our survey (8) shows that disabled adults:

are ailing to have their basic needs met: with nearly our out o ten (36 percent) unable

to eat, wash, dress or get out o the house due to underunded services in their area.

are withdrawing rom society: with nearly hal (47 percent) saying the services theyreceive do not enable them to take part in community lie and over one third (34

percent) being unable to work or take part in volunteering or training activities ater

losing support services.

are increasingly dependent upon their amily: with nearly our in ten (38 percent)

seeking support services saying they experienced added stress, strained relationships

and overall decline in the wellbeing o riends and amily.

are experiencing isolation, stress and anxiety as a result: with over hal (53 percent)

saying they elt anxious, isolated, or experienced declining mental health because they

had lost care and support services.

Many o those losing out in the system want to take part in society and contribute

to the economy but without the right support are orced to withdraw, undermining

the contribution they could make.

The impact o these cuts is clear both or disabled people:

I am in deb wih my heaing coss, I can aord o ea, and so now I have injecions our

imes a year, apparenly Im no geting he viamins and nuriens o help my body cope wih

several condiions. Jeea

and their amilies:

Trying o care or me wihou he suppor we need is killing my mum. Shes in agony and

emoionally worn ou. Were boh erried abou wha will happen. Emma

8 Survey carried out August 2012 see page two or urther details.


9/52

9Execuive summary

Chaper hree: beyond he crisis or disabled peopleA cap on social care costs provides little comort or working age disabled people.

The Government must act now and invest 1.2 billion to ensure it averts deepening

this crisis.

We broadly welcome the Governments acknowledgement o the crisis in care unding,

and the main proposals o the Dilnot Commission on the Funding o Care and Support.

But or too long we have been trying to answer the wrong question or working age

disabled people.

A cap on the lietime cost o care would help protect the assets o those who have

spent a lietime saving. However, because many younger disabled people have ew

assets to protect, the cap is o little or no benet in providing the support they need.

It is time to ask a dierent question o our care system. The majority o disabled adults

are concerned less with protecting assets than with a simpler, more urgent issue:

how can I get the support that I desperately need?

The soluion

Disabled people have told us that the most important actor in the unding crisis iswhether or not they are eligible or state support, and that rationing o unding is having

a devastating impact on their lives.

To resolve this issue, we must have a realistic threshold at which people become

eligible or care. As such, we urge the Government to set the threshold at which people

become eligible or care at a lower level than is currently proposed.

Doing so would provide vital care and support to at least 105,000 working age

disabled people in England, (9) who would be enabled to live ullling lives, to work,

and contribute to their communities.

Modelling carried out by the PSSRU on behal o Scope shows that providing this

care and support to disabled people will cost just 1.2 billion, or 0.17 percent o public

expenditure. (10)

The Government should ensure that the unding or this lower level o eligibility is

ring-enced, at least or an initial three year period, so that council are able to invest

in sustainable support, which prevents the unnecessary escalation o peoples needs

and the costs associated with them.

9 For more inormation see: Personal Social Services Research Unit (2013) Implications o setting

eligibility criteria or adult social care at moderate needs level: www.scope.org.uk/othercarecrisis

10 This calculation is based on gures taken rom HM Treasury PESA tables 2012, available online

here: http://www.hm-treasury.gov.uk/pespub_pesa12.htm


10/52

10 Execuive summary

ConclusionThe Care and Support Bill represents a proound opportunity or the Government

to provide care and support or all those who need it. Ater decades o trying, this

Government now has a chance to plug some o the historic gaps in the system,

prevent rising demand or care and support rom hitting wider services, drive orward

the progress that has been made over the last 70 years and nally create a system

that works or all those who need it.

The consequences o ailing to resolve the crisis, however, will be severe. Already

suering rom a lack o care and support, tens o thousands o disabled people will

be let to manage alone, unable to live independently, to work and contribute to their

communities. Hard ought or improvements to the system will be undone and universal

and emergency services will be stretched to breaking point as disabled people urgently

seek to replace the support they have lost.

The solution we set out in this report is clear, aordable and essential. Disabled people

can wait no longer or a system that works or all. The Government must act now to

avert this crisis.


11/52

Chapter one:A growing care crisis

11


12/52

12

Summary

Chaper one: A growing care crisis

Social care or working age disabled adults is underunded by at least 1.2 billion. (11)

At the same time, the number o people needing care and support is increasing.

The squeeze on unding is being exacerbated by cuts to council budgets, orcing

councils to reduce the numbers o disabled people who are eligible.

I the current reorms go ahead as planned, at least 105,000 disabled people aged

between 18 and 64 years are set to miss out on vital care and support.

11 Personal Social Services Research Unit (2013) Implications o setting eligibility criteria or adult

social care at moderate needs level: www.scope.org.uk/othercarecrisis

105,000Over 105,000 disabled people are se o lose ouon vial care and suppor.


13/52

13

The Governmens vision or careand suppor is under hrea


The Government has set out a new and ambitious vision or the uture o care andsupport in England, (12) with the principles o wellbeing and respect or individual

choices and decisions at its heart. The Government rightly aspires to create a system

that will enable disabled people throughout our society to participate in and contribute

to their local communities.

Disabled people across the country are enthusiastic about the positive impact that

such a vision could have on their everyday lives. The drat Care and Support Bill

refects some o the long-held ideas disabled people have about how care and support

should be provided (13) and it builds on the principles o independence written into the

UN Convention on the Rights o Persons with Disabilities. (14)

But beore the law has even been nalised, this vision is under threat.

Based on new research, (15) under the Governments planned changes we believe

105,000 disabled adults risk not being able to get the essential care and support they

need. Cut adrit rom the system, they will be let to end or themselves, unable to

do the things many o us take or granted like washing, eating, budgeting and

communicating, pushing them urther to the ringes o society.

Those who are lucky enough to still get support will struggle to get by with the amount

o care they receive. A recent Scope survey o 619 disabled people ound that twoin ve disabled adults thought the system was ailing to meet their basic needs

like washing, dressing or getting out o the house, and nearly hal said the services

they received do not enable them to take part in community lie. In a recent survey

conducted by Sense, (16) almost a third o deablind respondents needed more care

and support than they were receiving. Similarly, two thirds o people responding to a

survey by the National Autistic Society said they did not have enough support to meet

their needs. (17)

The historic underunding o care services or disabled adults has caused this crisis,

which has been exacerbated by more recent cuts to public spending. To deal with this

precarious position, councils have been orced to ration their unds and are, in the main,

withdrawing support rom all but a small minority o people with more complex needs.

12 See Part one o the Drat Care & Support Bill [2012]: http://www.dh.gov.uk/health/2012/07/

careandsupportbill

13 C.. Evans, J. (2002) Independent Living Movement in the UK: http://www.leeds.ac.uk/disability-

studies/archiveuk/evans/Version%202%20Independent%20Living%20Movement%20in%20the%20UK.

pd

14 Article 19 o the UN (2006) Convention on the Rights o Persons with Disabilities: http://www.un.org/

disabilities/convention/conventionull.shtml

15 Personal Social Services Research Unit (2013) Implications o setting eligibility criteria or adultsocial care at moderate needs level.: www.scope.org.uk/othercarecrisis

16 Sense (2012) Fair Care or the Future: Why social care matters or deablind people: http://www.

sense.org.uk/sites/deault/les/report_air_care_uture.pd

17 Bancrot et al. (2012) The way we are: autism in 2012, NAS: London


14/52

14 Chaper one: A growing care crisis

Underunding and the rationing o support together are perpetuating the unding crisisacing disabled adults. I the Government does not act, the new legislation could turn

this trend into an irreconcilable crisis or disabled adults.

Social care or working age disabled peopleis drasically underunded

The scale o underunding in social care is drastic. Based on research carried out

or Scope by the PSSRU we have ound that or working age disabled adults,

the system is underunded by at least 1.2 billion.(18) I we include the cost

o resolving inadequate levels o care, this underspend is likely to be even higher.

This refects the small amount we spend on social care as a country. Currently only

one percent o public expenditure unds care or working age disabled people; overall

in 2011 / 2012 the system accounted or just two percent o public spending. This

is much less than we spend on education, transport and pensions. In comparison,

NHS spending has risen by around 110 percent since the mid 1990s. (19)

At the same time, the number o people needing social care is rising.

In 2010/11, 1.1 million disabled people relied on the social care system, one third

o who are working age disabled people. But by 2020 we anticipate that the numbero people in need o care will have risen to 1.3 million, because more children with

complex needs are living into adulthood(20)and in our ageing society people are

living longer with additional care needs in older age. (21)

Although meeting the growth in older peoples needs is vital, population expansion

among younger disabled people is also a key driver in the growing demand or social

care. Recent projections(22)have suggested that there will be an average annual

increase o between 5.4 percent and 7.9 percent o adults with learning disabilities

requiring care between 2009 and 2026.

18 Personal Social Services Research Unit (2013) Implications o setting eligibility criteria or adult

social care at moderate needs level: www.scope.org.uk/othercarecrisis

19 Dilnot Commission (2011) Fairer Care Funding: The report o the Commission on Funding o Care

and Support: https://www.wp.dh.gov.uk/carecommission/les/2011/07/Fairer-Care-Funding-Report.pd

20 CeDR / DH (2009) Estimating uture numbers o adults with proound multiple learning disabilities in

England: http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_103200.pd

21 Age UK (2011) Care in Crisis: Causes and solutions: http://www.ageuk.org.uk/documents/en-gb/

campaigns/care%20in%20crisis%20-%20nal.pd?dtrk=true

22 CeDR / DH (2009) Op. Cit.


15/52

15Chaper one: A growing care crisis

A recent survey(23)published by the Association o Directors o Adult Social Services(ADASS) ound that the largest demographic pressure on local authority budgets is

rom increased numbers o people with learning disabilities (168 million).

The pressures on unding rom this growth in demand are stark and ADASS has

suggested that it would require a real-term increase o at least one percent annually

just to continue providing or those currently within the system, let alone account or

the increasing numbers in need o care and support. (24)

Auseriy has pushed he sysem o crisis poin

The gap between need and spending is increasing even urther ollowing the recession.

Between 2010 / 2011 and 2014 / 2015, local authority budgets will have shrunk(25)by

28 percent, which will be urther compounded by the extra two percent cut announced

in the 2012 Autumn Statement.(26)

23 ADASS (2012) A new system or care unding: Now is the time to act: http://www.adass.org.uk/

index.php?option=com_content&view=article&id=813&Itemid=470

24 Spending review analysis ollow the money and it isnt there, Mithran Samuel, CommunityCare 25.10.10: http://www.communitycare.co.uk/articles/25/10/2010/115665/spending-review-analysis-

ollow-the-money-and-it-isnt-there.htm

25 HM Treasury (2012) Budget 2012: http://www.hm-treasury.gov.uk/budget2012.htm

26 HM Treasury (2012) Autumn Statement 2012: http://www.hm-treasury.gov.uk/as2012_documents.htm

1 in 6Since 2008 he number o people using care has allenby a leas 90,000, or one in six o all people using care


16/52


These cuts to council budgets are deeply aecting social care services. The ADASSbudget survey ound that at least 23 percent o the 1 billion reduction in social care

expenditure was due to services cuts, not eciency savings.(27)The Institute or

Fiscal Studies similarly ound that between 2009 / 2010 and 2010 / 2011 at least

a quarter o councils had cut their social care budgets by nine percent. (28)

Sarah Pickup, the president o the ADASS, recently said(29)that national

Government was:

rying o see adul social care as an island, and is no, is in he middle o local

governmen which had is gran cu by 28 percen, and so i you had seen adul social

care over here, unaeced by he 28 percen, hen perhaps we would have been okay.

Without an increase in unding, councils will either be orced to urther cut social

care services, or will need to reduce spending on other services such as housing,

bin collections, libraries or road maintenance.

The Government recognises the need or more unding, as shown in the transer

o 2 billion rom the Department o Health and NHS budgets in the last Spending

Review. But this money is insucient to ll the gap between demand and currentexpenditure and because it orms part o the grant (Formula Grant), councils are

ree to spend it across any services, not just social care.

The impact o this unding squeeze has already been dramatic. In the last year alone,

the number o 18 64 year olds receiving social care ell by 36,000 a drop o seven

percent.(30)Since 2008 the number o people using care has allen by at least 90,000,

or one in six o all people using care.(31)Overall, there are ten percent less people

using care and support services than there were in 2005. (32)

As austerity takes its toll on councils, social care unding is already being stretched

to breaking point.

27 ADASS (2011) ADASS urges Government to include ndings o the Commission on the Funding o

Care and Support in its review o NHS legislation: http://www.adass.org.uk/index.php?option=com_cont

ent&view=article&id=732:adass

28 IFS (2011) The IFS Green Budget: www.is.org.uk/budgets/gb2011/gb2011.pd

29 Sarah Pickup at The uture o unding or care and support at the Westminster Health Forum 2012

30 Community Care Statistics, Social Services Activity - England, Scope Analysis using data rom2005/06 to 2011/12 http://www.ic.nhs.uk/catalogue/PUB07304/comm-care-stat-eng-2011-12-soci-serv-

act-tab.xls

31 Ibid.

32 Ibid.


17/52


Councils are resricing eligibiliy o suppor

But as more authorities respond to unding cuts the care system will come under

even greater strain.

Many disabled people experience health and social care as one system, yet unlike

the health in our NHS, council-unded social care is not ree at the point o use.

Instead, in order to get state-unded care and support a person must be assessed

as eligible by their council. Currently, eligibility or support is assessed againsta ramework called Prioritising Need, also reerred to as the Fair Access to Care

Services criteria (FACS). (33)

Councils can decide where to set the threshold or support, based on the levels

o need described in the FACS criteria. This means that whilst councils might assess

all o your needs, it is only those that reach the threshold that will be provided with

unding and support.

Introduced in 2003 and updated in 2010,(34)the criteria were intended to create

a national ramework against which councils should set their eligibility policies.

FACS is based on the risk and impact aced by an individual i issues relating to theirindependence are not addressed. The criteria are dened across our bands; low,

moderate, substantial and critical. The band a persons need is assessed as being

determines whether or not they will be entitled to care and support.

33 DH (2010) Prioritising need in the context o Putting People First: a whole system approach to

eligibility or social care guidance on eligibility criteria or adult social care: http://www.dh.gov.uk/

prod_consum_dh/groups/dh_digitalassets/@dh/@en/@ps/documents/digitalasset/dh_113155.pd which

is based on, but supersedes DH (2003) Fair access to care services guidance on eligibility criteria or

adult social care: http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/

documents/digitalasset/dh_4019641.pd

34 DH (2010) Prioritising need in the context o Putting People First: a whole system approach to

eligibility or social care - guidance on eligibility criteria or adult social care: http://www.dh.gov.uk/

prod_consum_dh/groups/dh_digitalassets/@dh/@en/@ps/documents/digitalasset/dh_113155.pd

28%By 2015 council budges will have shrunk by 28%

#


18/52


For example, the criteria or an individual assessed as moderate are as ollows:

there is, or will be, an inability to carry out several personal care or domestic routines;

and / or

involvement in several aspects o work, education or learning cannot or will not

be sustained; and / or

several social support systems and relationships cannot or will not be sustained;

and / or

several amily and other social roles and responsibilities cannot or will not

be undertaken.

At present, councils have discretion to set eligibility or care and support at any

one o these dierent levels o need.

Wha are he Fair Access o Care Services(FACS) crieria?

Only 24out of152councils providecare to those withmoderate needs


19/52


As social care budgets have tightened, many more councils have made the dicultchoice to raise their eligibility thresholds to substantial or above. This means that

hundreds o thousands o disabled people are not receiving social care, despite having

been assessed as in need. (35)

In 2005, 50 percent o the 152 local authorities in England provided care and support

to those with moderate needs and above, but by 2012, 84 percent were only providing

services at the higher threshold o substantial needs.(36)This means that only

three councils now provide social care to people who all into all our eligibility

bands and only 24 provide care to those with moderate needs and above.

Recent research suggests that the unding pressures on councils coupled with the

discretion they have to set eligibility has led to councils using eligibility thresholds to try

to manage numbers coming into the care system, rather than ocusing on determining

levels o support.(37)Increasingly councils are setting their own augmented thresholds

o lower critical or higher or upper substantial and relying on alternative ways

o restricting expenditure. (38)

Worryingly, this rationing and underunding o care has led to a reduction in early

intervention and the prevention o needs escalating. A recent British Red Cross /

ComRes poll ound almost two thirds (64 percent) o councillors across England have

seen unding or preventative and low-level social care cut or rozen since the last localelection.(39)Given the ocus on preventative care within the Governments White

Paper, (40) there is yet another clear contradiction between the vision and aspirations

or social care and the limits placed upon us by the unding crisis.

35 This has been happening or some time, see or example Leonard Cheshire Disability (2008)

Your Money or Your Lie: Disabled peoples experiences o the loss o social care services in England:http://www.lcdisability.org/?lid=6966

36 Age UK (2012) Care in Crisis 2012: http://www.ageuk.org.uk/Documents/EN-GB/Campaigns/care_

in_crisis_2012_report.pd

37 For more details and case studies see: Fernandez & Snell, T. (2012) Survey o Fair Access to Care

Services (FACS) Assessment Criteria Among Local Authorities in England: http://eprints.lse.ac.uk/44404/

38 Through or example the use o local Resource Assessment System (RAS) or a good explanation

o these systems see: http://www.supremecourt.gov.uk/decided-cases/docs/UKSC_2011_0005_

Judgment.pd - or attempting to cap care expenditure, or example see Legal challenge launched

against council care spending cap, Mithran Samuel, Community Care, 02.01.13: http://www.

communitycare.co.uk/articles/02/01/2013/118798/legal-challenge-launched-against-council-care-

spending-cap.htm?cmpid=NLC|SCSC|SCDDB-20130103-GLOB|news

39 British Red Cross (2012) Elderly and vulnerable let at risk by dangerous and short-sighted cuts to

preventative support, warns British Red Cross , http://www.redcross.org.uk/About-us/Media-centre/

Press-releases/2012/December/Elderly-and-vulnerable-let-at-risk-by-dangerous-and-short-sighted-cuts

40 Department o Health (2012) Caring or Our Future: Reorming Care and support: http://www.dh.gov.

uk/health/2012/07/careandsupportwhitepaper


20/52


Reduced eligibiliy means disabled aduls will lose ouAlthough the FACS criteria are intended to be a broadly national ramework,

councils have considerable leeway over where the threshold or eligibility is set.

This has resulted in signicant variation across the country and has created

a postcode lottery o support.

The Government has rightly recognised the need to resolve this postcode lottery

and plans to introduce a national eligibility threshold in the drat Care and Support

Bill. This will be a vital step in ensuring more clarity and consistency in the provision

o care or disabled people in the England.

However, the Government has indicated that the level o the threshold is most likely

to be set at the higher level o substantial. We are concerned that the Government is

approaching this decision the wrong way round. Instead o starting out by considering

what level o care and support would allow people to achieve and contribute to their

communities, the likely threshold is being set beore the real need, and the real

benets, have been properly understood.

Having a higher hreshold or care and suppor will mean ha:

1 Many disabled people will lose the vital support they receiveResearch commissioned by Scope rom the PSSRU at the London School o

Economics and Political Science (LSE) ound that there were 36,000 18 64 year old

disabled people with moderate level needs currently receiving social care. Under the

Governments current plans, all o these disabled people are likely to lose out.(41)

Yet because o the widespread raising o eligibility thresholds, there is a second, larger

group o working age disabled people who are outside the system and will continue

to lose out on support ollowing reorms. The PSSRU research shows that there

are at least 69,000 disabled people with moderate level needs who are not currently

receiving care and support. This number includes disabled adults whose needs areknown to councils, but who ail to meet a higher threshold o eligibility. It also includes

those who are not ully on the radar o councils, who are in temporary or transitory

care in the NHS or are totally reliant on amily members or care and support.

This means that at least 105,000 disabled people are set to miss out ollowing

the Governments reorms.

41 In theory (as drated) the new legislation will allow councils to set eligibility at a level lower than the

minimum threshold, should they choose to, but experience suggests that this unlikely and will fuctuate

with the nancial climate.


21/52


Currently many councils are assessing up disabled people in order to ensure theycontinue to get care and support. This exacerbates the postcode lottery, making it very

dicult to monitor levels o social care coverage. It also means disabled adults can

be signicantly dependent on the goodwill o sta to ensure they get the basic care

and support they need. The new eligibility ramework and national threshold proposed

in the drat Bill aims to achieve a more consistent approach.

2 The burden on universal services will signifcantly increase, but disabled

peoples needs still wont be met:

The Department o Healths vision is that people who arent eligible will be able to nd

support outside the ormal, council-unded social care system. (42) This means that

disabled people will be orced to rely on any universal and community-based services

that may be available.

But cuts to council unding have hit universal services even harder than social care.

The Institute or Fiscal Studies ound that spending on all central services outside

social care and education dropped by more than 12 percent between 2009 / 2010

and 2011 / 2012. (43) As such, universal services are unlikely to be in a position to pick

up the unmet need in the social care system. Universal services are also, by denition,

general services or everyone, so are not tailored to meet disabled peoples care

needs and are oten too infexible to provide appropriate support. Sta who providethese services may also not have the right experience, potentially leading to

saeguarding issues.

In short, we are at risk o creating a positive, empowering social care system but

one which works only or the very ew with the highest level o need. A large group

o disabled people, many o whom are keen to contribute to society but lack the

right support, are being let to all out o the system. The consequences o this

will be appalling, as this response to the Scope survey shows:

I was old ha I no longer me he crieria I can dress mysel bu Ive had o give up wearing

socks. I sruggle wih shoes and requenly have o ask riends, colleagues, amily and even

people on he sree o rescue my shoes and pu hem back on when hey all o. Joshua

42 Department o Health (2012) Caring or Our Future: Reorming Care and support: http://www.dh.gov.

uk/health/2012/07/careandsupportwhitepaper

43 Institute or Fiscal Studies (2012) The IFS Green Budget February 2012, www.is.org.uk/budgets/

gb2012/gb2012.pd, Scope analysis o Table 6.2, p140


22/52


3 The quality and transormation o care services will be undermined

Underunding is having a proound eect on the quality o care services, undermining

the drive or more personalised services and adding strain to other publicly unded

services. Councils are eeling a tension between providing the care they know disabled

people want and need, and delivering just enough care at a sucient quality in the

context o ever reducing budgets.

Social care and support services are being underunded and overstretched and

disabled people have consequently experienced a reduction in the amount o care

that they receive. One th (20 percent) o people with learning disabilities surveyed

by the Learning Disability Coalition in 2011 were told that their hours o care would

be reduced.(44) In a survey conducted by the Care and Support Alliance, more than

one th (23 percent) o respondents said services had been cut back even though

their needs had stayed the same.(45). As one disabled person told us:

I used o have a good suppor worker ha was jus or me now she is really sreched and

has o key work 3 4 ohers, she now has some managemen responsibiliies such as

supervising all he lower paid sa since he cu backs and has loads o paperwork. I eel

ha she has no go enough ime or me o achieve he hings I wan and need. Ira

Over the past two decades in particular, we have seen a transormation in the kind

o care that disabled adults receive. (46) Whilst once the only option was segregated

residential units, more recently disabled people have been put into the driving seat,

creating more support in their own communities or homes and even taking part in

commissioning their own services. (47)

44 Learning Disability Coalition (2011) Social care the continuing crisis: rom the perspective o local

authorities in England: http://www.learningdisabilitycoalition.org.uk/download/Social%20Care%t20-%20

The%20Continuing%20Crisis.pd

45 Care and Suppor t Alliance (2011) Evidence to the Commission on the Funding o Care and Support:

http://www.carersuk.org/media/k2/attachments/Care_and_Support_Alliance_Evidence_to_

Commission.pd

46 Beadle-Brown, J. & Kozma, A. (2007) Deinstitutionalisation and community living outcomes and

costs: report o a European Study (Volume 3: Country Reports) Canterbury: Tizard Centre, University

o Kent, http://www.kent.ac.uk/tizard/research/DECL_network/documents/DECLOC_Country_Reports.pd

47 For example, a user-driven commissioning programme set up by a consortium o Strategic Partners

to the Department o Health in March 2011 (led by Disability Rights UK and Shaping Our Lives), http://

www.disabilityrightsuk.org/userdrivencommissioning.pd


23/52


As well as bringing benets to disabled people, (48) the co-production o services hasalso been shown to eectively mitigate the eects o underunding. When comparing

152 local councils, a report by Demos in 2011 ound that involving service users in

designing and planning their services, and in some cases delivering them, was among

the interventions proven most eective in mitigating the impacts o cuts to council

budgets. (49) Many o these newer orms o care have ocused on enhancing disabled

adults independence and their ability to make inormed choices about the care and

support they receive. (50)

Funding those with moderate needs encourages a less crisis-driven approach in

social care, guarding against peoples needs escalating unnecessarily (51) and realisessavings to health services and the wider economy. In 2011, the Audit Commission

ound that 70 percent o councils reported eciencies by using preventative services

or adult social care. (52) Modelling by Deloitte commissioned by the British Red Cross,

recently demonstrated the cost benet to health and council services o preventative

support. Through the prevention o hospital admission and readmission, reduction

o the length o hospital stays and prevention o the use o expensive domiciliary

and residential care, it was estimated that in 2012 the British Red Cross, through

six community and A&E discharge schemes, realised savings per user rom these

schemes ranging rom 168 to 704. This relates to a rate o return o between

40 percent to 280 percent. (53)

Similarly, the National Audit Oce ound in their report into the cost o supporting

adults with autism that beside the negative impact o such crises on a persons lie,

acute services are also expensive, with inpatient mental health care costing between

200 and 300 per day. They concluded that i local support services identied

and supported just our percent o adults with high unctioning autism and Asperger

syndrome the outlay would become cost neutral over time. (54)

48 Social Care Institute or Excellence (2012) SCIE Research brieng 31: Co-production: an emerging

evidence base or adult social care transormation, http://www.scie.org.uk/publications/brieings/iles/

brieing31.pd

49 Demos (2011) Coping with the Cuts, http://www.demos.co.uk/iles/Coping_-_web.pd?1315593443

50 New Economics Foundation (2012) Budgets and Beyond: http://www.neweconomics.org/sites/

neweconomics.org/iles/Budgets_and_Beyond_ExecSumm.pd

51 Demos (2011) Tailor Made, http://www.demos.co.uk/iles/Tailor_made_-_web.pd?1318945824

52 National Audit Commission (2011) Improving Value or Money in Adult Social Care: http://www.

audit-commission.gov.uk/SiteCollectionDocuments/Downloads/20110602vmadultsocialcare.pd

53 Deloitte (2012) The Economic Impact o Care in the Home Services, http://www.redcross.org.uk/~/

media/BritishRedCross/Documents/What%20we%20do/UK%20services/Final%20report%20to%20

BRC_with_marque_NO_APDIX%20%281%29.pd

54 National Audit Oce (2009), Supporting People with Autism Through Adulthood, http://www.nao.org.

uk/idoc.ashx?docId=D05CFB69-D6CE-4397-A2DE-533852C2D9F0&version=-1


24/52


With continued underunding and no prospects o investment, councils andservice providers will however increasingly revert back to more traditional models

o service provision, which will undermine both peoples independence and the wider

transormation o care, as well as the Governments ambition as set out in drat

legislation and the Care and Support White Paper. (55) As a disabled person whose

care had been reduced told us:

The social worker said i I couldn ge 24 hour care in my own home Id be orced ino

residenial care agains my will. I eel suicidal a he hough o losing my home and reedom.

My basic human righs are being denied. Im devasaed. Thomas

Underunding has already resulted in many younger adults ending up in inappropriate

residential care services meant or older people. (56) In 2009, o the 24,000 young

adults with physical disabilities living in care homes, it is estimated that around 9,000

were inappropriately housed. (57) A report (58) by Mencap and the Challenging

Behaviour Foundation has shown that that placing people in inappropriate services is

not only short sighted, but can also negatively aect their wellbeing and oten end up

costing the tax payer more in the long run: Winterbourne View being a case in point. (59)

In addition, the underunding and rationing o resources will reinorce the

disproportionately poor quality o care and support services that people rom black

and minority ethnic groups oten receive. These groups ace diculties nding services

that are culturally appropriate or community-specic. (60) Cultural dierence can best

be accommodated through small, tailored provision which requires development by

local user-led organisations, but under-investment will continue to drastically reduce

the likelihood o these sorts o inclusive, locally tailored designs.

55 New Economics Foundation (2012) Doing Services Dierently, http://www.neweconomics.org/sites/

neweconomics.org/iles/Doing_services_dierently.pd

56 When the Loving Care Stops, The Telegraph Online, 2 September 2012, Cherrill Hicks, http://www.

telegraph.co.uk/health/9515657/When-the-loving-care-stops.html

57 Inappropriate here means living in a place where most o the other inhabitants are much older, and

where there is a lack o suitable daytime activities. New Philanthropy Capital (2009) Rights o passage:

Supporting disabled young people through the transition to adulthood, http://www.thinknpc.org/

publications/transition-o-disabled-young-people

58 Mencap/Challenging Behaviour Foundation (2012) Out o Sight: http://www.mencap.org.uk/

outosight-report

59 Department o Health (2012) Transorming care: A national response to Winterbourne View Hospital:

https://www.wp.dh.gov.uk/publications/iles/2012/12/inal-report.pd

60 Scope/ENC (2012) Over-looked Communities, Over-due Change: how services can better support

BME disabled people http://www.scope.org.uk/drupal-m/213/download


25/52


High eligibiliy or care will aec a wide rangeo disabled people

Setting the national eligibility threshold at a higher level o substantial would leave

many disabled adults disadvantaged. We believe that the proposed social care system

will predominantly aect:

1 36,000 disabled adults (61) with moderate level needs who are currently receiving just

enough care and who risk simply alling out o the social care system under the

proposed changes. Their needs are likely to escalate without adequate and appropriate

support. This will result in declining health, wellbeing and nances, and increasing costto the state when they return to the system with a higher level o need and in crisis.

Sarah has a learning disabiliy and lives independenly. For several years, she enjoyed going

o a local day cenre once a week. The council has now sopped unding people wih

moderae needs so Sarah is now suck a home. (62)

Ian uses a wheelchair. He can manage mos aspecs o daily living on his own as his a

is wheelchair accessible. He used o be unded or a cleaner o come in once a week,

bu since his unding has been cu, he relies on his siser o keep his a clean and dohis washing. (63)

2 69,000 disabled adults (64) with moderate level needs who are not currently receiving

any council-unded care and support because o the continued rationing o services.

These people are going without the vital support they need to wash, dress, cook,

manage a budget or communicate with those around them.

When Michael was rs diagnosed wih Muliple Sclerosis, he was unaware ha local

auhoriies provide care and suppor o disabled people. When he did approach his localcouncil, he was urned down on he grounds o no money being available. (65)

61 Based on projections in PSSRU (2013) Implications o setting eligibility criteria or adult social care

at moderate needs level: www.scope.org.uk/othercarecrisis

62 Based on conversations with disabled people63 Based on conversations with disabled people

64 Based on projections in PSSRU (2013) Implications o setting eligibility criteria or adult social care

at moderate needs level: www.scope.org.uk/othercarecrisis

65 Leonard Cheshire Disability (2012) Social Care Stories: http://www.lcdisability.org/?lid=11473


26/52


Mary has seen her riends go hrough he sress o applying and being urned down and

does no wan o be made o eel like she is begging rom he Governmen. (66)

I desperaely wan someone o help me a bedime bu I can begin o sar recruiing

someone. This isn jus abou money; is abou knowledge and conacs. Timohy (67)

It will drastically aect those who just need a little bit o support to prevent them rom

spiralling into crisis:

Olivers healh is unsable and precarious. His aher has demenia, and Oliver needs

someone o man his phone or jus a ew hours each monh in case his aher calls in an

emergency. Wihou his suppor Oliver canno do his volunary work, and has resigned

rom commitees on which he used o be a member. Because o he sress rom lack

o suppor, Olivers physical and menal healh problems have been worsening. (68)

3 Even disabled people who are deemed to have substantial or critical needs and

who receive some support rom the local authority, nd that the services they receiveare inadequate. More than two in ve o Scopes survey respondents with substantial

needs had to spend their own money to get the care and support they undamentally

needed, and 50 percent or those with critical needs. This widespread problem will

continue to plague a system which sets the national eligibility threshold at substantial.

Kae has criical care and suppor needs, bu she has o make a large nancial conribuion

o her care. This means a lo o her own money is being swallowed up by he cos o

addiional hours o suppor above hose her council unds. As a resul, she does no have

he exra money she needs o und oher essenials like mainaining disabiliy equipmen or

improving he accessibiliy o her home. (69)

66 Survey respondent



69 Based on survey response


27/52


This is aecting many disabled people with dierent conditions and in dierentsituations. This includes, or example:

4 People with a visual impairment, who are already disproportionately eeling the

eects o ever-rising eligibility thresholds. The total number o adults recorded

as visually impaired in receipt o social care services has reduced by 36 percent

since 2005 / 2006, whereas in comparison, the total number o adults in receipt

o social care services(70) has reduced by 16 percent.

Tim has a visual impairmen. He has received suppor rom he council or several years,

bu his care package has been reduced. He has been old ha i he sill wans suppor wih

shopping, he will have o pay or i himsel. (71)

5 For disabled people with progressive conditions, being assessed as having moderate

needs and subsequently being turned down or care will mean the deterioration o their

condition. This will introduce perversity into the social care system; with some disabled

adults having to wait, and suer a worsening o their condition, until they are deemed

as having substantial needs.

I have waied almos wo years or my broken shower o be adaped parially due o he

council being slow and no believing me when I old hem wha I needed unil hey saw me

in relapse. Uma

6 Setting the national eligibility threshold at substantial would also badly aect people

with conditions that fuctuate. These people vary between having dierent levels o

need. Because care is becoming ever more tightly rationed this group will only get help

i they can consistently demonstrate a substantial need. Some disabled people are

assessed as having moderate needs on a good day, but then lack the support theyneed to keep well or to help them cope during more dicult periods.

70 Based on an initial analysis o the National Adult Social Care Intelligence Service (NASCIS)

Reerrals, Assessments and Packages o Care data



28/52

28

Anna has severe bipolar disorder. On he day o her assessmen or care and suppor Anna

eels relaively well. To he assessor i appears ha Anna only has moderae needs, so is

no able o ge any help rom he local auhoriy a all. Bu on a bad day, Annas siuaion is

very dieren. She is someimes unable o dress hersel, ge ou o bed, wash, or ge

ou o he house. Anna is unable o work or voluneer.

Mos o he ime Mathew needs help wih jus one or wo everyday asks, and a litle help

wih his work and amily lie. Bu Mathew has a ucuaing condiion, and because o a

reducion in he care and suppor services he receives, has been bedridden or weeks. (72)Megans council decided hey could no longer und her care and suppor. Megans

menal healh condiion ucuaes drasically, wih blocked ou memories someimes

unexpecedly coming back and having debiliaing eecs on her day-o-day lie.

Megan someimes eels ha ending her lie is he only opion. (73)

7 Some people with high unctioning autism or Asperger syndrome may only need some

seemingly low level support, such as help with social skills and managing about the

house (e.g. with bills and organising cleaning activities). Frequently, these types o need

are not recognised by councils as being substantial. Yet without this help, this groupare at risk o developing more severe problems, such as social isolation and severe

mental health problems.

My son has Asperger syndrome and he local social services said his IQ was normal and

so hey couldn help. They said he could do hings like cook and go o he shops. Ye he

exreme challenges he aces wih communicaion and social siuaions led o exreme

isolaion and resuled in him developing such signican menal healh problems ha he

was laer secioned. Sandy (74)

In an era o dicult spending choices, there needs to be a way o prioritising who

should receive care and support, however setting the threshold at substantial will

disadvantage many. In the next section we look at how the underunding and rationing

o support is already taking its toll on the lives and nances o disabled people.



74 From a conversation between a parent and the National Autistic Society



29/52

Chapter two:Disabled people a crisis poin

29


30/52

30

Summary

Chaper wo: Disabled people a crisis poin

Social care cuts are having a serious impact on the daily lives o disabled adults

and their amilies.

Our social care survey (75) reveals some stark realities. We ound that disabled adults:

are ailing to have their basic needs met: with our out o ten (36 percent) unable

to eat, wash, dress or get out o the house due to underunded services in their area.

are withdrawing rom society: with nearly hal (47 percent) saying the services

they received did not enable them to take part in community lie and over one third

(34 percent) being unable to work or take part in volunteering or training activities

ater losing support services.

are increasingly dependent upon their amily: with nearly our in ten (38 percent)

seeking support services experiencing added stress, strained relationships,

and an overall decline in the wellbeing o riends and amily.

are experiencing isolation, stress and anxiety as a result: with over hal (53 percent)

saying they elt anxious, isolated, or experienced declining mental health because

they had lost care and support services.

The picture is shocking, but simple: an ever-rising eligibility threshold is resulting

in a drastically poor quality o lie or tens o thousands o disabled people.

75 In Summer 2012 over 600 disabled adults aged between 18 and 64 took part in our survey and told

us about their experiences o care and support in England. All quotes in the report come rom the

survey and the conversations we have had with people aterwards.

2 in 5Two in five disabled peopleare ailing o have heir basic needs me


31/52

31Chaper wo: Disabled people a crisis poin

Disabled people are no geting heirbasic needs meThe underunding and rationing o services has let disabled people without thevital support that they need to meet their basic needs. Four out o ten (36 percent)

respondents to our survey said that due to the withdrawal o unding or their support,

they were not able to ull basic personal care tasks such as washing once a day,

getting dressed, eating home-cooked ood or getting out o the house. Respondents

told us o the indignity they were experiencing:

I ofen go wihou a shower or or days wihou using caheers as I jus don have he energy

o manage. Michelle

Disabled peoples living conditions can also quickly deteriorate without

practical help. (76)

Cleaning suraces, appliances, cupboards, washing oors, idying, dusing ec., are no

longer geting done. So my home is becoming increasingly unhygienic and, perhaps,

poenially hazardous o mysel and o visiors. I canno aord o replace household

appliances such as my ridge-reezer (which has roting, rused doors and leaks puddles

o waer ono he oor). Sohail

Councils are being orced to make dicult decisions about peoples care. Even when

disabled people do receive care and support, cases o inappropriate or inadequate

care are becoming increasingly common. One respondent told us:

I am worried abou my healh, my digniy, my privacy and my skin i I am orced o wear

inconinence pads insead o geting help o go o he loo. Charlie

The problem is worse or those with moderate care needs. 41 percent o respondents

to our survey who had moderate needs said that the services they receive rom the

council did not meet their basic needs, compared with 17 percent or those with critical

needs and 18 percent or those with substantial needs. Disabled people denied social

care services are being picked up by other, more expensive services when their

situation deteriorates. (77)

76 Henwood, M. and Hudson, B. (2008) Lost to the system?: The Impact o Fair Access to Care: http://

www.scie-socialcareonline.org.uk/proile.asp?guid=8246367E-05C4-46A9-86AD-78F0D74F0DC9

77 See or example National Audit Oce (2009) Supporting People With Autism Through Adulthood:

http://www.nao.org.uk/idoc.ashx?docId=d05cb69-d6ce-4397-a2de-533852c2d90&version=-1


32/52

32 Chaper wo: Disabled people a crisis poin

Many disabled people are wihdrawing rom socieyWithout the care and support they need, tens o thousands o people who are ready

and willing to participate and contribute to society and the economy, are instead

isolated rom their local communities. A relatively small amount o support can make

all the dierence between independence and isolation. (78)

Nearly hal (47 percent) o respondents to our survey said the services they received

did not enable them to take part in community lie by which we mean participating

in local organisations, socialising with their riends in the local area or going to events

in the community. (79) Again, the care and support system is hitting those with

moderate needs the hardest. Nearly two thirds (64 percent) o survey respondents

with moderate needs said that their care services did not help them partake

in community lie, compared with 23 percent or those with critical needs and

27 percent or those with substantial needs.

I don do paid work bu was doing volunary work bu have been resigning rom commitees

because I jus can cope. This is my precious enuous link wih my communiy going up

he spou. Alannah

One respondent who needs care and support to get out o their house and into the

community told Scope:

Many aciviies I would like o atend are a weekends and I only have help geting up on

weekdays, so I miss such concers, esivals ec. Geo

78 Demos (2011) Tailor Made Cover: http://www.demos.co.uk/iles/Tailor_made_-_web.

pd?1318945824 New Economics Foundation (2012) Budgets and Beyond: http://www.neweconomics.

org/sites/neweconomics.org/iles/Budgets_and_Beyond_ExecSumm.pd

79 Where engaging with the community reers to activities that bring the disabled person outside o his /

her house, going to a place o worship, voting in elections, using local leisure centres and parks, taking

part in community events or volunteering.


33/52

33

For many i is impossible o fnd and keep a jobA huge number o disabled people are also unable to nd and keep work. Disabled

people told us that their care and support was a critical actor in the working lie.

Without it, many reported being unable to sustain work or meaningully engage in work

related activity. Over one third (34 percent) o respondents to our survey who had lost

their care and support services were unable to work or take part in volunteering or

training activities. This refects research by the National Autistic Society, which shows

that that just 15 percent o people with an autism spectrum condition are in ull-time

employment with a lack o adequate support being a key barrier. (80)

Respondents also told us about how a lack o care is making sustained employment

almost impossible:

They claimed I was no longer was eligible or he (social care) services despie medical

evidence o he conrary. A Local Governmen Ombudsman complain ollowed. Finally I am

being reassessed I has reduced he qualiy o my lie and impaced upon my abiliy o

work. My job is now in jeopardy as I have been o sick or one year. Kaherine

80 The National Autistic Society (2008) I Exist: The message rom adults with autism in England,

http://www.autism.org.uk/Get-involved/Campaign-or-change/Campaign-resources/

Campaign-reports/I-Exist.aspx


One in three people who have losheir care package are unable o work

1 in 3


34/52


Others told us they have a strong disincentive to engage in paid work or accumulatesavings because under existing care rules once they own over 23,250 in savings or

assets (81) they become liable or the cost o their support. This results in many

disabled adults having to weigh up their career prospects with the risk o exceeding

the mean-tested threshold and not having enough money to pay or their own care

needs. As one respondent put it:

Even hough I do work ull-ime I do no eel incenivised as I am urned down or grans or

exra equipmen I may require because o means esing. There is also no incenive o savebecause i will ineviably be aken rom me or care I require in he uure. [The care sysem]

makes i seem like i is bes o spend and have more help rom he sae.

Is wrong bu rue. I have a spread-shee o income and expendiures

o make sure I am living wihin my means, even wih my care coss. I eel driven o progress

so I can earn well no all eel his hough. Ben (82)

Needless to say, inadequate social care or working age disabled people is a

contributory actor in the reported ailure o wider Government agendas, such as the

Work Programme and Work Choice, in getting substantive numbers o unemployeddisabled people back into work. (83)

81 For residential care this includes the value o a home, or domiciliary it does not. For more

inormation see Department o Health (2012) Charging or Residential Care Guide 2012: https://www.

wp.dh.gov.uk/publications/iles/2012/10/Updated-CRAG-guidance-20121.pd and Department o Health

(2003) Fairer charging policies or home care and other non-residential social services: guidance or

Councils with Social Services Responsibilities: http://www.dh.gov.uk/prod_consum_dh/groups/dh_

digitalassets/@dh/@en/documents/digitalasset/dh_4117931.pd

82 Respondent to the Scope Money Matters Survey 2010

83 Only 1 in 50 disabled people on the scheme have been supported into work and only 1 in 100

Employment and Support Allowance (ESA) claimants ound a job. O 878,000 people reerred onto the

scheme, only 31,000 have successully ound work, see: http://research.dwp.gov.uk/asd/asd5/report_

abstracts/rr_abstracts/rra_821.asp


35/52


Lack o social care also removes rom the economy the many amily memberswho have to take on inormal and unpaid care roles as a consequence. The 2011

Census ound that one in ten (10 percent) residents o England and Wales (5.8 million

people) devote at least part o their week to providing care without any expectation

o payment. (84) Inormal carers are less likely to be employed or be in training or

education than non-carers. For male inormal carers, 68 percent are in employment

compared to 82 percent o men with no caring responsibilities. For emale inormal

carers, only 56 percent are in employment compared to 66 percent o women with

no caring responsibilities. (85)

One respondent, who was told that they were ineligible or support rom their council,told us:

My husband has been unable o coninue wih his job as he has o care or me o enable me

o work o pay or he addiional needs ha I have. This has had a huge nancial impac on

our lives and lef us wih deb. Amanda

84 Telegraph, Census 2011: 2.1m unpaid carers devote over 20 hours a week to looking ater loved

ones, 11 December 2012, http://www.telegraph.co.uk/property/9737983/Census-2011-2.1m-unpaid-

carers-devote-over-20-hours-a-week-to-looking-ater-loved-ones.html

85 Carmichael, F. (2011) Inormal Care in the UK: Constraints on Choice (Report or the British

Academy): http://www.birmingham.ac.uk/schools/business/research/research-centres/crew/working-

papers.aspx

One in ten people provide unpaid care

1 in 10


36/52


Lack o care and suppor is orcing disabled peopleino deb

A lack o support is orcing many disabled adults into debt. Some are orced to sacrice

spending on everyday essentials. As one respondent told us:

I am in deb wih my heaing coss, I can aord o ea, and so now I have injecions our

imes a year, apparenly Im no geting he viamins and nuriens o help my body cope wih

several condiions. Jeea

Disabled people who are no longer deemed eligible or state support are being

orced to pay the ull costs o their own care and those who receive insucient care

are topping-up using their own money. Nearly two thirds (63 percent) o survey

respondents with moderate needs had to spend their own money to get the care and

support they undamentally needed, compared with only 43 percent or those with

substantial needs and 50 percent or those with critical needs. This helps to show

that the vast majority o those with moderate needs increasingly deemed ineligible

or support are not being eectively picked up by universal services, but are likely

to pay or their own care, oten causing nancial instability. Many will be let withoutany support altogether.

We have a lo less money have had o dig ino savings and can aord o mend he roo

which is leaking and geting worse. Kim

Over one third (34 percent) o survey respondents reported experiencing debt, regularly

having to borrow money, re-mortgaging their home or having to go without essential

equipment. One person had accumulated 20,000 worth o debt and could no longer

aord to pay or their carers, leaving them with insucient support.


37/52

37

This is o real concern as disabled people are already more likely to experience

nancial hardship. Disabled people have signicantly lower annual earnings (86)

one in three (31 percent) living in low income households (87) and more than

40 percent lacking ormal savings. (88)

Disabled adults unding their own care are likely to be hit by cuts and changes

to disability benets. Disability Living Allowance (DLA) and the new Personal

Independence Payment (PIP) that is replacing it in April 2013 is a payment made

to disabled people to help them meet the signicant additional utility, transport andother costs that arise rom their disability. (89) The care crisis is orcing disabled people

and councils to use this money to contribute towards the cost o their care. In 2011 all

but our councils (90) took at least one care component o a persons Disability Living

Allowance (91) into account when assessing their care contributions. The 1.2 billion

worth o cuts the Government has made to the DLA budget (92) will thereore aect

those using them to partially or ully und their own support and exacerbate the crisis.

86 In a typical 9 to 5 job, disabled people would earn 2,000 less each year than non disabled adults,

ODI disability equality indicator B7: http://odi.dwp.gov.uk/disability-statistics-and-research/disability-

equality-indicators.php

87 The Poverty Site (2010) Low Income and Disability, http://www.poverty.org.uk/40/index.shtml?2

88 Scope (orthcoming) Financial Inclusion or Disabled People

89 Wood, C. and Grant, E. (2010) Counting the Cost, London: Demos, http://www.demos.co.uk/iles/

Counting_the_Cost_-_web.pd?1292598960

90 Cornwall, Kingston upon Thames, Newham and Plymouth

91 Disability Living Allowance is a payment which is awarded to disabled people to help them meet the

extra costs arising rom their disability. For more inormation see the Government website: https://www.

gov.uk/dla-disability-living-allowance-beneit/what-youll-get

92 HM Treasury (2010) Budget, http://cdn.hm-treasury.gov.uk/junebudget_complete.pd


One in three care users are in deb o pay or heir care coss

1 in 3


38/52


All o these actors leave disabled people in a state o severe nancial instability,making them more vulnerable to changes in their circumstances or condition. This

particularly aects the many disabled people with fuctuating or long term conditions

who are currently being assessed as ineligible or care and support. (93) This

problem will aect more people i the national threshold is set at substantial.

Failure o ge care is aecing disabled peoples menaland physical wellbeing

With unmet needs, amily strains, exclusion rom communities, and unemployment

and consequent social isolation and nancial hardship, the current social care systemis having a prooundly negative eect on the wellbeing o many disabled people.

A third (33 percent) o adults with autism responding to the National Autistic Societys

2008 surveysaid they had developed serious mental health conditions as a resulto a lack o support. (94) In 2012, over hal (53 percent) o respondents to Scopes

survey said they elt anxious, isolated, or experienced declining mental health

because they had lost care and support services.

My repeaed ailure o obain due suppor rom hose wih he power o provide his, hasmade me eel rejeced, excluded, worhless, irrelevan and o no value o sociey. The

resulan abysmally poor qualiy o lie and sandard o living I have o endure has caused me

permanen damage and injury o my wellbeing, over and above he injuries susained

hrough no aul o my own, a he ime o he road-rage atack and is afermah. I have los

much o my sel-respec and condence. Marin

I have go sressed and i has badly aeced my condiion. Marha

I am consanly worried ha well eiher end up in prison or no paying ax or in a

care home. Sacy

The widespread mental and physical eects o a lack o care and support threaten

to undermine urther the Governments vision or wellbeing to be at the heart o

these reorms.

93 CSCI (2008) Cutting the Cake Fairly: CSCI Review o Eligibility Criteria or Social Care, http://

collections.europarchive.org/tna/20081105165041/http://www.csci.org.uk/about_us/publications/cutting_

the_cake_airly.aspx

94 The National Autistic Society (2008) I Exist: The message rom adults with autism in England, http://

www.autism.org.uk/Get-involved/Campaign-or-change/Campaign-resources/Campaign-reports/I-Exist.

aspx


39/52


Disabled peoples amilies are under srainBecause disabled people are less able to rely on state-unded services and have

little money and ew assets themselves, they have to depend more on amily members

or care and support. Nationally, the number o UK residents giving 20 or more hours

o unpaid care a week or someone with an illness or disability has increased by ve

percent between 2001 and 2011. (95) As respondents to our survey made clear, these

new amily dynamics are putting signicant strain on the relationships they hold most

dear, leaving disabled people eeling guilty and like a burden on their loved ones.

My husband works 40 hours a week as well as looking afer me. I don like he ac he does

as much as he does. He is my husband no my carer. Jane

One in ve (20 percent) o respondents to our survey elt that they were being orced

to become more reliant on their riends and amily. Nearly our in ten (38 percent)

who sought care and support services rom their local council experienced added

stress, strained relationships, and overall decline in the wellbeing o riends and amily.

This increased dependence aects those providing inormal care. One told us that:

Trying o care or me wihou he suppor we need is killing my mum. Shes in agony and

emoionally worn ou. Were boh erried abou wha will happen. Emma

There are approximately 55,000 (40,000-70,000) children and young people providing

inormal care to a co-resident adult in England.

There are approximately 40,000 (25,000-55,000) adults aged between 19 and 64

receiving co-resident care rom children and young people in England.

Inormal or unpaid care is dened in these data sources in broadly similar terms to

mean provision o help or support to amily members, riends or neighbours because o

long-term physical or mental ill-health or disability or problems relating to old age. (96)

95 In 2011, over a third (37 percent) or 2.1million o the 5.8million usual residents in care roles were

giving 20 or more hours o unpaid care or someone with an illness or disability a week. This marks

a ve percent increase on 2001 (32 percent, 1.7 million). Oce or National Statistics (2011) Census,

http://www.ons.gov.uk/ons/rel/census/2011-census/key-statistics-or-local-authorities-in-england-and-

wales/stb-2011-census-key-statistics-or-england-and-wales.html#tab---Provision-o-unpaid-care

96 Pickard, Linda (2008) Numbers o disabled adults who receive care rom children and young people

in England. PSSRU Discussion Paper, DP 2623. PSSRU, London, UK. Available at http://www.pssru.

ac.uk/archive/pd/DP2623.pd


40/52


Another respondent told us:

My son has probably suered he mos; we used o have carers in he morning, probably my

wors ime o day o help wih breakas ec. A six years old i ell on him o prepare breakas

and ge himsel ready or school. Now a 8 he ofen misses school hrough preending o be

ill because he is worried abou me he should be a child while grownups worry abou adul

hings. Loty

Young people in inormal care roles are also disproportionately likely to beunemployment. In a study conducted in 2011, out o a sample o 1,985 inormal carers,

none o the carers under 25 were employed. (97) The average caring duration or

younger carers was just over two years which indicates a considerable on-going

commitment that is highly likely to impact on their uture employment opportunities. (98)

We need o move beyond his crisis

As it currently stands, many disabled people are nding alternative sources or

their care and support; putting together a patchwork o support using a combination

o riends, amily and privately purchased services. Not only does this put incredible

strain on their nances and relationships, and drastically reduces the choices and

opportunities o those who nd themselves in inormal care roles, these solutions are

extremely ragile. They are likely to unravel at the times they are most needed. (99)

97 Compare this with the act that in 2010, The unemployment rate or 16-25 year olds nationally was

20 percent. The Poverty Site (2011) Young adult unemployment, http://www.poverty.org.uk/35/index.

shtml

98 Carmichael, F. (2011) Inormal Care in the UK: Constraints on Choice (Report or the British

Academy): http://www.birmingham.ac.uk/schools/business/research/research-centres/crew/working-

papers.aspx

99 Henwood, M. and Hudson, B. (2008) Lost to the system? The Impact o Fair Access to Care a report

commissioned by CSCI or the production o The state o social care in England 2006-07. London:

CSCI, http://www.scie-socialcareonline.org.uk/proile.asp?guid=8246367E-05C4-46A9-86AD-

78F0D74F0DC9


41/52

Chapter three:Beyond he crisis

41


42/52

42 Chaper hree: Beyond he crisis

Summary

The social care system is chronically underunded, leading to a rationing o supportwhich is prooundly aecting disabled peoples lives.

Too many decisions about the uture o social care have been made without

a ull understanding o the needs and aspirations o younger disabled adults.

For working age disabled people a cap on care costs provides at best only part

o the answer.

Instead, the most critical part o social care reorm is the level at which we set the

eligibility threshold.

We strongly recommend that the threshold is set at moderate or the equivalent level,

with the necessary unding being made available to support this.

New evidence shows that setting the threshold at moderate will cost 1.2 billion,

and will ensure that hundreds o thousands o working age disabled people receive

the care they urgently need.

0.17%0.17% of public expenditure will resolve he crisis orworking age disabled people


43/52

43Chaper hree: Beyond he crisis

The care sysem is ailing working agedisabled peopleIncreasing demand and underunding have pushed our care system to crisis point.The impact on disabled peoples lives is severe, with too many being reused social

care, and even more receiving inadequate or inappropriate services.

Some clear messages are emerging rom our analysis in the previous chapters

o this report. Disabled adults need, and want, a unding solution that addresses the:

Demographic changes and increasing demand or care and support;

Chronic and historic underunding o care;

Escalating rationing o care unds and services;

Unnecessary and damaging escalation o need.

Puting disable