Facts and information on care and support for independent living in the community / 1
Contents
1. Introduction
2. The right to independent living
3. Introduction to care and support for independent living in the home
4. Care and support for independent living crisis
5. Independent Living Fund:
6. Cumulative impact of care and benefit cuts
1. Introduction
Disabled people face the impact of combined cuts to care and support for independent living and welfare benefits. These cuts will have a profound negative impact on Disabled people’s independent living and participation in the wider community.
Inclusion London is collating key facts to illustrate scale of the cuts that Disabled people are facing. This fact sheet focuses primarily on key facts about care and support for independent living provided in the home.
Overview:Disabled people in the UK
There are:
- 11.5 million people in the UK who are covered by the disability provisions set out in the Equality Act. This is 19% of the population.[1]
- Approximately 1.4 million Disabled people are living in London.[2]
- Just under 1.3millionDisabled people aged 16 to 64 years resident in London.[3]
2. The right to independent living
Disabled people have a right to support which enables independent living under Article 19 of the UN Convention of Rights of People with Disabilities, which states:
Article 19 - Living independently and being included in the community
States Parties to the present Convention recognise the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:
- Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;
- Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;
- Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.
What is independent living?
Inclusion London believes that independent living for Disabled people is having the same opportunities, choices and rights as other citizens. Independent living is being able to choose when to go bed, what to eat. It’s about being able to live in your own home with people you choose to live with, being able to leave that home to get out and about - go shopping, go to see a band, go to court! Independent living is having the chance to be a parent and friend, have a family and social life. It is taking part in community and public life, and having the opportunity to get a job, build a career, have an education, and volunteer. Independent living is being able to contribute, participate and be included.
Disabled people’s rights to support to maintain independent living and inclusion in the community are clearly stated under Article 19 of the UNCRPD. Disabled people to also have rights under the UNCRPD to education, employment, participation in political and cultural life as well as other rights encompassed in the wider definition of ‘independent living’ mentioned above.
Inclusion London believes that Disabled people’s right to support to make this wider definition of independent living a reality needs to be recognised by national and local government.
3. Introduction to care and support for independent living in the home
What is care and support?
Basic care and support for independent living can include:
- Support with household chores
- Help with shopping and meals
- Personal care, including washing and dressing
- Equipment
Support can be provided in the home or in a residential or nursing home. It can be provided by private companies or local organisations including Deaf and Disabled People’s Organisations. This fact sheet focuses mainly on care and support for independent living provided in the home.
Eligibility for funded care and support for independent living
To receive funding from your local authority for your care and support for independent living you need to undergo an assessment. This involves a physical assessment and if appropriate a mental health assessment.
Councils use the Fair Access to Care Services (FACS) system to decide how much support people with care needs can expect. The system has four eligibility bands -'critical', 'substantial', 'moderate' and 'low' - indicating the level of need or risk to independence.
Councils can set the level where they will start to provide funding, for examplethe council can decide to only provide support for people who have substantial or critical needs.More information about FACS can be found at:
National eligibility criteria
The government has announced there will be a national eligibility criteria and have proposed that this is set at ‘substantial’ needs.’[4] This proposal is in the regulations of the Care Bill.[5]
Inclusion London recommendsthat the eligibility criterion is set at ‘moderate’.
Financial assessment
To obtain funding for care and support for independent living Councils also carry out a financial assessment which involves a means test. Capital and savings below £14,250 are disregarded in the means test.
If you have between £14,250 and £23,250 in capital and savings and your need for care and support for independent living reaches the threshold set by your local authority then the council will subsidise your care and support for independent living costs according to a sliding scale. If you have capital and savings above £23,250 you will have to fund all of your own care and support for independent living. Your income is also taken into account in the means test, for example pensions and welfare benefits[6].
Funding reforms
The government has proposed new funding reforms, which are contained in the Care Bill 2013 and were also mentioned in the 2013 budget[7]:
- A cap on care costs of £72,000. However, the cap does not cover bed and board, which will be capped at £12,000 a year[8].
- The threshold for carecosts in residential homeswill rise to £118,000 - anyone with assets of between £14,250 and £118,500 will be entitled to some financial support according to a sliding scale[9];
- If you own your home and need to move to a residential or nursing home the local Council will lend you the moneyso your home does not have to be sold during your life time, but interest will have to be paid to the Council when the loan is paid back.
Inclusion London’s comments
The funding reforms are very complicated, but more importantly they will not improve the care and support for independent living for the majority of Disabled adults as they only benefit those with substantial savings or those who own their own home. According to government’s own figures only 100,000 people will benefit[10] leaving 1,400000 people not benefiting at all.
To read more about Inclusion London’s response to the governments funding reforms go to our response to the governments ‘Caring for our future’ consultation available at:
More information about the funding reforms is available in the governments ‘Caring for our future’ consultation document available at: http://consultations.dh.gov.uk/social-care-funding/funding_reform/consult_view
In the Care Bill 2013 available at:
Also at:
4. Crisis in care and support for independent living
Care and support for independent living has been underfunded for many years: A£1.2 billion funding gap in social care support for Disabled people under age of 65 has been exposed by Scope’s ‘Other Care Crisis’ report[11] and Age UK ‘Care in Crisis 2012’ report reveals that England is £500 million a year short of ‘even maintaining the inadequate levels of provision’ for older people[12].
This situation is being exacerbated by the coalition government’s cuts to local authority funding. Councils have responded with huge cuts in funding for care and support for independent living for instance, £890 million was taken from the national care and support for independent living budget between April 2012 and March 2013[13].
- Annual savings of 20% (£2.68bn) of reductions will have been made by March 2014 from adult social care budgets[14] .
- £795m savings adult social care budgets are planned for 13/14 on top of the £1.89 billion made in the last 2 years[15].
- By 2015 support will be cut by £8 billion, a cut of about 33%.[16]As a result, since 2008 over 90,000 Disabled people have lost their care and support for independent living[17].
Yet increased funding is needed not less, as mentioned above, there is a £1.2 billion funding gap in social care support for Disabled people under age of 65[18].
The under-funding together with the cuts in funding have resulted in the number of people receiving care and support for independent living dropping dramatically:
- 517,000 adults received care and support for independent living in their home (also know as home care) in 2011/2012[19]
- In 2008-09 582,000 received support this indicates a drop of 65,000 adults receiving support in their home/home care between 2009 and 2012[20].
- 1 in 3 people receiving care and support for independent living is under the age of 65[21].
There are some positive changes because the number of service usersreceiving self-directed support rose by 40% since 2010/2011 to 527,000. Of these, 139,000 received a direct payment, up 11% from 2010/2011.[22]
It is also interesting that the CQC rates care providers and found that 91 per cent of those services run by councils and voluntary organisations were deemed good or excellent, compared with 81 per cent of privately run services[23].
Narrowing of eligibility
Many councils have already narrowed the eligibility criteria for care and support for independent living, so Disabled people that previously obtained support are no longer eligible, for instance, some councils that used to provide support to those with moderate needs now only support those with ‘substantial’ or ‘critical’ needs. The number of councils in England that are only providing support to those assessed as having ‘substantial’ or ‘critical’ needs is rising there were:
70% of English councils in 2008/09, while 83% do so in 2012/13[24]
2% of councils only fund those with critical needs[25].
As a result over 100,000 Disabled working age adults are set to miss out on essential care[26].
Inclusion London’s comments
As mentioned above the government has now set the national eligibility criteria at substantial[27] needs under the Fair Access to Care Services (FACS) so the situation is unlikely to improve. Inclusion London recommends that the threshold is set at ‘moderate’.
The Care Bill 2013[28] does propose a duty for Councils to provide preventative services. However, time will tell whether this will give Disabled people the support they need at an early stage to maintain independent living and well-being.
This is coupled with a rise in local authority charges for social care support[29]On average service users were paying £588 per year more in real terms in 2012/13 than they were paying in 2009/10.[30]
Impact of the cuts and changes
As a result of the funding cuts to local authority care and support for independent living budgets the level of care Disabled people now receive is cut to a minimum; in many areas Disabled people only receive support to get up, dress, eat and go to bed, or do not receive any support at all because their needs are assessed as ‘low’ or ‘moderate’.
If Disabled people do not receive enough support, employment or voluntary work is jeopardised, participation in the community is lost as is participation in cultural or political activities, contact with friends and family is curtailed and a social life outside the home can become non-existent: independent living, in its widest sense, is lost completely.
Research findings of a survey of 600 Disabled people vividly illustrate how Disabled people are being failed by the care system:
- nearly four out of ten (36 percent) Disabled people are unable to eat, wash, dress or get out of the house due to underfunded services in their area[31]
- nearly half (47 percent) say they are withdrawing from society because the services they receive do not enable them to take part in community life[32]
- over one third (34 percent) are unable to work or take part in volunteering or training activities after losing support services[33]
- over half (53 percent) saying they felt anxious, isolated, or experienced declining mental health because they had lost care and support for independent living services.[34]
What action is the government taking?
£3.8 billion was announced in the June 2013 spending review, ‘to improve adult social care and join up with health services’. This includes £2billion of ‘new’ NHS money[35].
Inclusion London’s comments
While Inclusion London welcomes the increased funding we are concerned that the positive impact will be counter-acted by:
- a further cut of 10% on local authority budgets[36]
- £795m savings on adult social care budgets planned for 13/14 on top of the £1.89 billion made in the last 2 years[37]
- a further cut of £4bn in addition to the £11bn of welfare cuts - to be made by 2014/5[38].
As mentioned above Inclusion London is also concerned that the national eligibility criteria has been set at ‘substantial’ so Disabled people’s health and wellbeing and level of independence will have deteriorated considerably before support is provided.
Also we regret that the funding is at the NHS’s expense and note that The Royal College of General Practitioners (RCGP) has warned that the ‘crisis’ in general practice will intensify due to money being diverted away from GP services[39].
Inclusion London’s recommendation
Inclusion London believes that care and support for independent living should be free at the point of delivery paid for from national insurance contributions/general taxation similar to the NHS. Australia is rolling out their DisabilityCare service we recommend that the UK looks at adopting a similar scheme[40]
5. Independent Living Fund
The Independent Living Fund (ILF) is an independent and discretionary charitable trust, managed by a board of trustees.
Brief history of the ILF
The Independent Living Fund (ILF) was established in 1988 to provide funding for severely Disabled people. This original fund had no age restrictions.
Independent Living Extension Fund:
In 1992 the ILF closed to new claimants but the Independent Living Extension Fund maintained payments to people who applied under the pre 1993 system. Former Extension Fund users can receive funding up to a maximum of £815.
The Independent Living (1993) Fund:
receivedall new applications from 1993-2007. All applications to the new fund could only be made by the local authority, which had to contribute a minimum of £200 a week towards costs. Applicants had to be between the ages of 16 and 65 years.Former 1993 Fund users can receive up to a maximum of £475. Eighty four per cent of current claimants are 1993 Fund users.
The Independent Living (2006) Fund:
The Independent Living (Extension) fund, co-existed alongside the Independent Living Fund (1993) fund, but from October 2007 these two funds were replaced by the Independent Living (2006) Fund.In 2008 the funding for the ILF changed from a ‘demand led’ to a ‘cash limited basis’ and eligibility criteria was narrowed.
2010 ILF closes to new claimants
The ILF’s budget for 2010/11 was reduced and new applications were limited to people working at least 16 hours a week. The ILF also increased the amount that local authorities were required to contribute from £320 to £340 per week. Users were expected to contribute at least half their DLA component towards the costs of their care[41]. When this new criteria was announced applications to the ILF greatly increased.
In June 2010, when the 2010-11 budget had already been allocated the trustees decided to temporarily close the ILF to new applicants to‘ensure that the existing 21,000 ILF users’ awards continue at their current level.’More information is available in a government briefing paper at:
Following a public consultation the government announced in December 2010 that the ILF would be permanently closed to new claimants[42], existing users would be protected ‘throughout this Parliament’ i.e. until May 2015[43]. The consultation documents and government’s response are available: https://www.gov.uk/government/consultations/the-future-of-the-independent-living-fund-ilf
Permanent closure of ILF announced
Following a public consultation on the future of the ILF the Minister of Disabled People, Esther McVey announced in December 2012 that the ILF would permanently close in March 2015 and funding would be devolved to local authorities and devolved administrations.[44]
There were many concerns regarding the consultation process, which included:
- the lack of information in the consultation documents regarding funding arrangements once Local Authorities became responsible for funding ILF users care for instance the government did not made it clear whether central government would continue to provide the same level of funding year on year post closure in 2015. As a result Local Authorities did not know how much they would have to find from their ever decreasing budgets. Several Councils mentioned this lack of information in their consultation responses.[45]
- It was also unclear and whether funding would be ring-fenced once transferred to Local Authorities – without ring-fencing funding could be used to mend pot holes or flood defences rather than used for support for Disabled people.
Court challenge
The Minister’s decision to close the ILF was challenged in court by five ILF users. The judgement made in November 2013 by the Court of Appeal quashed the Government’s decision to close the Independent Living Fund (ILF) and ruled that the Minister for Disabled people had breached equality duties when making the decision to close the ILF[46].