Care Bill [Lords]

Written evidence submitted by Inclusion London (CB 05)

(1.0) 1. Introduction

(1.1) Inclusion London would be grateful if the Scrutiny Committee would consider the proposed amendments suggested in this document and recommend them to the House of Commons. The amendments can be found in from paragraph (4.0) in Part 4. of this paper.

(1.2) Inclusion London

Inclusion London is a London-wide organisation, run by and for Deaf and disabled people, which promotes equality for Deaf and disabled people in London and provides capacity-building support for Deaf and disabled people’s organisations in the capital.

(1.3) Disabled People

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 1.3 million disabled people aged 16 to 64 years resident in the London [3] .

(2.0) 2. Inclusion London’s general principles regarding independent living/social care

(2.1) What is independent living and why we need this duty alongside a well-being duty

Independent living for disabled people means having the same opportunities, choices and rights as other citizens. It’s about being able to get a job, build a career, have an education and take part in community and public life. Independent living is about being able to choose when to go bed, when to get up, what to eat. It’s about having the chance to be a parent and friend, have a family and social life. It’s about being able to live in your own home with people you choose to live with and being able to leave that home to get out and about - go shopping, go to see a film, meet up with friends. Independent living is about being able to contribute, participate and be included.

(2.2) The current ‘well-being’ definition in the Care Bill 2013 does incorporate some aspects of independent living, but it leaves out vital independent living concepts of choice, access, inclusion, rights and equal participation. We need independent living and these concepts explicitly included in the Care Bill to ensure the full and equal participation of disabled people as much as the well-being of the individual. Independent living works and has been directly responsible for the development of key social care policies including personalization and Direct Payments

(2.3) Independent living is at the heart of the UN Convention on the Rights of Persons with Disabilities (UNCRPD), which was ratified by the UK in 2009 [4] . Choice is a key aspect of Article 19 [5] of the UNCRPD as it gives the State the responsibility to ensure that disabled people have ‘choices equal to others’ and to ensure that disabled people have a right to choose where and with whom they live. An explicit duty to promote independent living will ensure that the Care Bill 2013 reflects and expresses the UNCRPD.

(2.4) Independent living as a goal and a right is not just applicable to disabled people of working age but all care and support users.

(3.0) 3. Funding crisis

(3.1) Funding for Care and Support is at crisis point. Research by the London School of Economics for Scope revealed that there is £1.2 billion funding gap for social care support for disabled people under the age of 65 [6] , also Age UK’s Care in Crisis 2012 report [7] showed that there is a shortfall of £500 million a year just to maintain the inadequate levels of care and support for older people as provided when the Coalition government was elected.

(3.2) Local authorities in England have reduced adult social care budgets by £1.89 billion during the period from April 2011 to March 2013 - this is at a time when the numbers of older and disabled adults continues to grow at 3 per cent per year [8] . As a result social care/independent living support in many areas is at a minimal level so support is only provided to get up, dress, eat and go back to bed. This basic level of support isolates and excludes disabled people and prevents ‘inclusion in the community’, breaching Article 19 of the UN Convention.

(3.3) The government has now set the national eligibility criteria at substantial [9] needs under the Fair Access to Care Services (FACS). As a result ‘105,000 disabled people are at risk of not getting the basic support they need to help them eat, get washed and leave their homes if Government sets eligibility at 'substantial needs' [10] .

(3.0) The under-funding of social care/independent living support does not make economic sense as without this support many disabled people will not be able to work, volunteer or live an active life and as a result are more likely to see their needs escalate and in turn call on expensive health services [11] .

(3.4) Fair and sustainable funding

Inclusion London believes that social care and independent living support should be free for all at the point of delivery, paid for by national insurance contributions/general taxation similar to the funding mechanis m for the NHS , this would be a fair and sustainable funding system .

(4.0) 4. Inclusion London’s recommendations for key amendments to the Care Bill 2013:

(4.1) Inclusion London urges the Scrutiny Committee to support the proposed amendments to the Care Bill 2013 as detailed below to secure and enable disabled and older people’s independent living, choice and control.

(4.2) The first suggested amendment would place disabled people and older peoples independent living at the heart of the Bill:

1. Amendment to: Clause 1 Promoting individual well-being [12]

Each proposed amendment is highlighted in bold:

1 Promoting individual well-being and independent living

(1) The general duty of a local authority, in exercising a function under this Part in the case of an individual, is to promote that individual’s well-being, independence and inclusion as equal and valued citizens and members of the community.

(a) That duties under independent living promote the wider definition of independent living as expressed in the UN Convention on the Rights of Persons with Disabilities.

(2) "Well-being", and ‘independent living’‘ in relation to an individual, means that individual’s well-being and independence so far as relating to any of the following-

(a) personal dignity (including treatment of the individual with respect); respect for privacy and individual autonomy

(b) physical and mental health and emotional well-being;

(c) protection from abuse and neglect;

(d) control and choice by the individual over day-to-day life (including over care and support, or support, provided to the individual and the way in which it is provided);

(e) full and equal access to, and participation in, work, education, training, volunteering, recreation, cultural, public and community life;

(f) social and economic well-being;

(g) domestic, family and personal relationships;

(h) suitability and choice of living accommodation;

(i) the individual’s contribution, participation and inclusion as equal and valued citizens to society.

(3) In exercising a function under this Part in the case of an individual, a local authority must have regard to the following matters in particular-

(a) the importance of beginning with the assumption that the individual is best-placed to judge the individual’s well-being and independent living needs;

(b) the individual’s views, wishes, feelings and beliefs;

(c) the importance of preventing or delaying the development of needs for care and support or needs for support and the importance of reducing needs of either kind that already exist;

(d) the need to ensure that decisions about the individual are made having regard to the individual rights as a disabled person under the UNCRPD; all the individual’s circumstances (and are not based only on the individual’s age or appearance or any condition of the individual’s or aspect of the individual’s behaviour which might lead others to make unjustified assumptions about the individual’s well-being)

(e) the importance of the individual participating as fully as possible in decisions relating to the exercise of the function concerned and being provided with the information and support necessary to enable the individual to participate;

(f) the importance of achieving a balance between the individual’s well-being and that of any friends or relatives who are involved in caring for the individual; but the needs of carers should not be used to obstruct disabled people’s active participation in society

(g) the need to protect people from abuse and neglect;

(h) the need to ensure that any restriction on the individual’s rights or freedom of action that is involved in the exercise of the function is kept to the minimum necessary for achieving the purpose for which the function is being exercised.

(4.2) 2. Amendment to Clause 2 ‘Preventing need for care and support’ [1]

The best way to support independent living and well-being is through the provision of high quality, community based services, which meet the needs of disabled and older people with ‘low’ level needs.

Inclusion London asks the Committee to recommend an amendment so there is a duty to:

· Maintain independent living and well-being through the provision of preventative, personalised community based services that enable people to have choice, control and independence.

(5.0) 3. Independent Living Fund

Amendment to insert a new clause

(5.1) There are very serious concerns that if the Government decides to continue with the plan to close the Independent Living Fund (ILF) in 2015 users’ care and support will be dramatically reduced to the basic ‘clean and feed’ level currently provided by Local Authorities. We believe that the ILF is a model of good practice that should be extended and developed rather than being dismantled.

(5.2) There are no provisions in the Care Bill to ensure disabled people’s independent living after the proposed closure of ILF in 2015.

(5.3) We ask the Committee to propose that a new Clause is added to the Bill to ensure that:

· The cost effective and very successful Independent Living Fund (ILF) is kept open and re-opened to those eligible before the closure to new applicants in 2010. 

· Set up an Independent living task force, co-produced with ILF users and disabled peoples organisations, to review independent living including the Independent Living Fund, in order to identify how best to improve, develop and extend independent living support so that is fit for the 21 century, as recommended by the Joint Human Rights Committee report of November 2012  

(6.0) 4. Advocacy

(6.1) It is crucial that independent advocacy is provided right through the process of obtaining and maintaining a disabled person’s care and support.

(6.1) Independent advocacy will enable disabled people to participate in the assessment and review process but also enable disabled people to give direct feedback about the quality of services, which will help prevent ongoing abuse of disabled people in the future.

(6.2) Therefore we ask the Committee to recommend the following amendments in bold to three clauses:

Clause 5. Promoting diversity and quality in provision of service [2]

(2) In performing that duty, a local authority must have regard to the following matters in particular-

(c) the need to offer and provide an independent advocate to enable service user feedback to improve the quality of services

(The subsequent parts of this clause will need to amended, so the original (c) become (d) and the original (d) because (e) etc)

Clause 9. Assessment of adults need for care and support [3]

(5) A local authority, in carrying out a needs assessment, has

(d) A duty to offer and provide an independent advocate to the adult to enable full participation in all needs assessments and reviews

Clause 42. Enquiry by local authority [4]

(2) The local authority must make (or cause to be made) whatever enquiries it thinks necessary to enable it to decide whether any action should be taken in the adult’s case (whether under this Part or otherwise) and, if so, what and by whom. The local authority must-

(a) Offer and provide an independent advocate to an adult who is experiencing, or at risk of, abuse or neglect to enable them to give evidence and participate fully in the enquiry.

(7.0) 5. Amendment to Clause 9 Assessment of an adult’s needs for care and support [1]

(7.1) The assessment is the key gateway to care and support so it is important that disabled people who are expert in their own needs should be at the core of the assessment process.

(7.2) Inclusion London urges that the Committee propose an amendment to ensure that:

· All care assessments reflect the rights to independent living and choice encompassed in the UNCRDP. Also that all assessments are a person centred process.

(7.3) Other people, including carers, should not be invited to an assessment unless the adult being assessed agrees.

(7.4) Therefore we recommend that Clause 9 is amended to (amendments are in bold):

(5) A local authority, in carrying out a needs assessment, must involve-

(a) the adult,

(b) any carer that the adult which the adult has asked to be involved

(8.0) 6 . Amendment to Clause 13 The eligibility criteria [6]

(8.1) In June 2013 the government announced a new national eligibility threshold for care and support, which will be introduced in 2015 ‘at a level equivalent to ‘substantial’ in current guidance’ [7] .

(8.2) However, LSE research, published in January 2013 revealed that ‘105,000 disabled people are at risk of not getting the basic support they need to help them eat, get washed and leave their homes if Government sets eligibility at 'substantial needs' [8] .

(8.3) Inclusion London asks the Committee to put forward an amendment to ensure that:

· The eligibility threshold for care is set at a ‘moderate’ level to ensure that disabled people are able to receive the support needed in order to live independently.

(9.0) 7. Amendment to Clause 18Duty to meet needs for care and support [9] - Commissioning and added value of DDPOS

(9.1) Many disabled people prefer the services provided by the voluntary sector such as local Deaf and disabled people’s organisations (DDPOs) with an expertise in disabled people’s needs. These organisations find it difficult to compete against bids from large organisations. Commissioners need to recognise the added value which DDPOs can bring to the provision of care services.

(9.2) Inclusion London asks the Committee to propose an amendment to Clause 18 Duty to meet needs for care and support [9] (the amendments are in bold).

(5) A local authority, having made a determination under section 13 (1) , must meet the adult’s needs for care and support which meet the eligibility criteria if-

(a) the adult is ordinarily resident in the authority’s area or is present in its
area but of no settled residence, and

(b) the adult’s accrued costs exceed the cap on care costs.

(c) A duty for Commissioners to take into account the added value local Deaf and disabled people’s organisations bring to delivering independent living support services, and weight tenders accordingly

(10.0) 8. Amendment to Clause 31 ‘Adults with capacity to request direct payments’ [11]

(10.1) It is important for disabled people that that the current duty for local authorities to offer a direct payment remains in place. So we ask the Committee to propose the amendments in bold below:

Adults with capacity to request direct payments

(1) The local authority must offer the adult a direct payment

(2) This section applies where-

(a) a personal budget for an adult specifies an amount which the local
30authority must pay towards the cost of meeting the needs to which the
personal budget relates,

(b) the adult requests the local authority to meet some or all of those needs
by making payments to the adult or a person nominated by the adult or

(c) the adult accepts the offer of a direct payment

(11.0) 8. Amendment to ‘Continuity of care and support when an adult moves’ - Clause 37 ‘Notification, assessment etc’ [12]

(11.1) Disabled people should have the same freedom to move home as non-disabled people i.e. without the fear that their care and support package will be removed or reduced.

(11.2) Inclusion London urges the Committee to propose an amendment below (see wording in bold):

Clause 37. Notification, assessment, etc

· The new care package provided by the second authority must be equivalent to the existing care package, provided by the first authority.

(12.0) 9. Conclusion

(12.1) Inclusion London would be grateful if the Scrutiny Committee could propose the amendments to the Care Bill 2013 above, to ensure that disabled people’s rights to independent living, choice and control is placed at the heart of this vital legislation.

January 2014

Appendix 1

Links to clauses

(The numbers refer to the Clauses in the Care Bill 2013):

Clause 1. Promoting individual well-being :

http://www.publications.parliament.uk/pa/bills/cbill/2013-2014/0123/cbill_2013-20140123_en_2.htm#pt1-pb1-l1g1

Clause 2. Preventing needs for care and support: http://www.publications.parliament.uk/pa/bills/cbill/2013-2014/0123/cbill_2013-20140123_en_2.htm#pt1-pb1-l1g2

Clauses regarding the provision of independent advocacy:

Clause 5. Promoting diversity and quality in provision of services:

http://www.publications.parliament.uk/pa/bills/cbill/2013-2014/0123/cbill_2013-20140123_en_2.htm#pt1-pb1-l1g5

Clause 9 . Assessment of an adult’s needs for care and support

http://www.publications.parliament.uk/pa/bills/cbill/2013-2014/0123/cbill_2013-20140123_en_2.htm#pt1-pb3-l1g9

Clause 42. Enquiry by local authority

http://www.publications.parliament.uk/pa/bills/cbill/2013-2014/0123/cbill_2013-20140123_en_5.htm#pt1-pb11-l1g42

Clause 9. Assessment of an adult’s needs for care and support

http://www.publications.parliament.uk/pa/bills/cbill/2013-2014/0123/cbill_2013-20140123_en_2.htm#pt1-pb3-l1g9

Clause 13 . The eligibility criteria :

http://www.publications.parliament.uk/pa/bills/cbill/2013-2014/0123/cbill_2013-20140123_en_3.htm#pt1-pb3-l1g13

Clause 18 Duty to meet needs for care and support

http://www.publications.parliament.uk/pa/bills/cbill/2013-2014/0123/cbill_2013-20140123_en_3.htm#pt1-pb5-l1g18

Clause 31 . Adults with capacity to request direct payments

http://www.publications.parliament.uk/pa/bills/lbill/2013-2014/0001/lbill_2013-20140001_en_4.htm#pt1-pb7-l1g31

Clause 37. Notification, assessment, etc http://www.publications.parliament.uk/pa/bills/cbill/2013-2014/0123/cbill_2013-20140123_en_5.htm#pt1-pb9-l1g37

Appendix 2

UN Convention on the Rights of Persons with Disabilities

Article 19 - Living independently and being included in the community

States Parties to this Convention recognize 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:

a. 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;

b. 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;

c. Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.


[1] Fulfilling Potential: Building Understanding report http://odi.dwp.gov.uk/fulfilling-potential/index.php

[2] http://www.statistics.gov.uk/statbase/Product.asp?vlnk=15106

[3] http://www.london.gov.uk/sites/default/files/assessment_gla_deaf_disabled_equality_2013.pdf

[4] http://www.un.org/disabilities/default.asp?id=259

[5] See relevant part of ‘Article 19 - Living independently and being included in the community’ below:

[5] ‘States Parties to the present Convention recognize 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:

[5] a)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;’.

[5]

[5] Please see Article 19 in full in Appendix 2

[6]

[6] http://www.scope.org.uk/news/other-care-crisis

[7] http://www.ageuk.org.uk/latest-news/archive/500m-funding-gap-for-older-peoples-social-care-revealed/

[7]

[8] http://www.adass.org.uk/index.php?option=com_content&view=article&id=813:a

[9] http://www.nationalhealthexecutive.com/Integrated-care-Social-care/lamb-sets-national-eligibility-criteria-for-social-care

[10] http://www.lse.ac.uk/newsAndMedia/news/archives/2013/01/socialCareCrisisReport.aspx

[10]

[11] http://www.bps.org.uk/news/unemployment-can-lead-depression

[11] http://campaigntoendloneliness.org/toolkit/wp-content/uploads/Evidence-on-mortality-and-morbidity1.pdf

[12] http://www.publications.parliament.uk/pa/bills/cbill/2013-2014/0123/cbill_2013-20140123_en_2.htm#pt1-pb1-l1g1

[12]

[1] http://www.publications.parliament.uk/pa/bills/cbill/2013-2014/0123/cbill_2013-20140123_en_2.htm#pt1-pb1-l1g2

[1]

[2] http://www.publications.parliament.uk/pa/bills/cbill/2013-2014/0123/cbill_2013-20140123_en_2.htm#pt1-pb1-l1g5

[3] http://www.publications.parliament.uk/pa/bills/cbill/2013-2014/0123/cbill_2013-20140123_en_2.htm#pt1-pb3-l1g9

[4] http://www.publications.parliament.uk/pa/bills/cbill/2013-2014/0123/cbill_2013-20140123_en_5.htm#pt1-pb11-l1g42

[1] http://www.publications.parliament.uk/pa/bills/cbill/2013-2014/0123/cbill_2013-20140123_en_2.htm#pt1-pb3-l1g9

[6] http://www.publications.parliament.uk/pa/bills/cbill/2013-2014/0123/cbill_2013-20140123_en_3.htm#pt1-pb3-l1g13

[6]

[7] https://www.gov.uk/government/news/social-care-users-will-be-guaranteed-a-minimum-level-of-council-help-under-new-plans

[8] http://www.lse.ac.uk/newsAndMedia/news/archives/2013/01/socialCareCrisisReport.aspx

[9] http://www.publications.parliament.uk/pa/bills/cbill/2013-2014/0123/cbill_2013-20140123_en_3.htm#pt1-pb5-l1g18

[9]

[9] http://www.publications.parliament.uk/pa/bills/cbill/2013-2014/0123/cbill_2013-20140123_en_3.htm#pt1-pb5-l1g18

[9]

[11] http://www.publications.parliament.uk/pa/bills/lbill/2013-2014/0001/lbill_2013-20140001_en_4.htm#pt1-pb7-l1g31

[12] http://www.publications.parliament.uk/pa/bills/cbill/2013-2014/0123/cbill_2013-20140123_en_5.htm#pt1-pb9-l1g37

[12]

[12]

Prepared 10th January 2014