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United Kingdom

D. Independent living

D1. Choice of living arrangements

There is no absolute right to live in the community in the UK, although a series of government policies have advanced the ‘personalisation’ of support - including commitments towards greater individual choice and control. Since the 1990s there have been important developments in the policy and legal framework that support independent living for disabled people. The provision of support is increasingly separated from specific types of service or particular buildings and mechanisms for this include flexible purchasing arrangements in a mixed economy of care, and the provision of direct payments to more disabled people. The basic provisions for the allocation of services in England, Wales and Scotland are set out in separate statutes. In England the Care Act 2014 (which came into force in April 2015) governs the assessment of needs and eligibility for access to social care services for adults. In Wales the Social Services and Well-Being (Wales) Act 2014 addresses the needs of disabled people of any age. In Scotland the overarching statute is the Social Work (Scotland) Act 1968 which has been much amended, most recently by the Social Care (Self-directed Support) (Scotland) Act 2013 and the Carers (Scotland) Act 2016. Under the terms of the Mental Health Act 1983 it is legally possible to place a person in an institution for varying amounts of time, depending on circumstances. The conditions for being released are also governed by the Mental Health Act 1983, as amended by the Mental Health Act 2007 and Mental Capacity Act 2005. The Deprivation of Liberty Safeguards were introduced as an amendment to the Mental Capacity Act 2005 and govern the authorisation of deprivations of liberty in care homes and hospitals for people who lack mental capacity. In other settings, the authorisation must be sought from the Court of Protection. The Law Commission is currently reviewing the Deprivation of Liberty Safeguards and legislation underpinning them.

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Update date: Mon, 2019-05-20

D2. De-institutionalisation

Legislation and policy has broadly supported de-institutionalisation for most disabled people since the National Health Service and Community Care Act 1990. Strategies and policies support a long-term shift of people and resources from residential provision in larger institutions towards support for community living and towards greater support for choice and control in independent living since the 1990s. The Community Care (Direct Payments) Act 1996 legalised cash payments to disabled people in lieu of services and policy measures have subsequently strengthened this provision. Since the Health and Social Care Act 2001 it is mandatory to offer the choice of direct payments instead of services in kind in England and Wales – these duties are now found in the Care Act 2014 and the Social Services and Well-being (Wales) Act 2014 respectively. Mandatory measures were introduced in Scotland, through the Community Care and Health (Scotland) Act 2002, and the Social Care (Self-directed Support) (Scotland) Act 2013), and in Northern Ireland through the Carers and Direct Payments Act (Northern Ireland) 2002. Since November 2009, local authorities may make direct payments to ‘authorised persons’ (such as ‘carers’) for people who are judged to lack mental capacity to consent to receiving and managing the payments.

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Update date: Mon, 2019-05-20

D3. Quality of social services

Established through the Health and Social Care Act 2008, the Care Quality Commission monitors all care services provided by the National Health Service (NHS), social service departments, private companies and voluntary sector organisations in England. This includes monitoring of the situation of people whose rights have been curtailed under the Mental Health Act 1983. The Health and Social Care Act 2008 also sets out how services are to be regulated and monitored, within the context of the Human Rights Act 1998.

In Wales these social care functions are fulfilled by the Care and Social Services Inspectorate Wales under The Health and Social Care (Community Health and Standards) Act 2003 and The Care Standards Act 2000 although in 2018 these were reformed when the Regulation and Inspection of Social Care (Wales) Act 2016 came into force.

The Department of Health, Social Services and Public Safety has responsibility for improving the safety and quality of health and social care services in Northern Ireland. Formal standards differ from those in England. Health and social service inspection are separate in Scotland and carried out by the Care Inspectorate. While the functions of each of these organisations are the same, the way that they are constituted and the regulations they use differ.

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Update date: Mon, 2019-05-20

D4. Provision of assistive devices at home

Under the Care Act 2014 / Social Services and Well-being (Wales) Act 2014, disabled people in England / Wales have a legal right to an assessment of their needs by the local authority where they live. Where judged eligible and funding permits, they may receive equipment or a direct payment to allow purchase of equipment to meet their assessed needs. More substantial alterations to housing are available (following assessment and determination of eligibility) through local authorities as a consequence of the Housing Grants, Construction and Regeneration Act 1996: disabled facilities grants are available in England, Wales and Northern Ireland. In Scotland the Housing (Scotland) Act 2006 allows local authorities to provide various forms of finance, assistance and information or advice to home owners for repairs, improvements, adaptations and for buying or selling a house. Smaller sums for minor alterations may be paid for through the Care and Support (Charging and Assessment of Resources) Regulations 2014 in England and via other grants that aim to improve housing more generally, for people needing assistance, in all parts of the UK.

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Update date: Mon, 2019-05-20

D5. Availability of personal assistance schemes

The Community Care (Direct Payments) Act 1996 removed a legal prohibition to provide disabled people with money to purchase personal assistance or other services. In England, direct payments are now governed by the Care Act 2014, Care and Support (Direct Payments) Regulations 2014, and Statutory Guidance. In Wales the position is the same, but the key provisions are the Social Services and Well-being (Wales) Act 2014, The Care and Support (Direct Payments) (Wales) Regulations 2015 and the Code of Practice (Part 4 Meeting Needs). Direct payments and personal budgets may be spent on meeting assessed needs by people over 16 years of age, with or without support in managing them. In England and Wales people judged to lack capacity may also receive payments, with funding paid to an appropriate person on their behalf. Payments are allocated by local authorities following assessment; a process that encompasses an assessment of need, an eligibility assessment and a financial assessment. In the past, Direct Payments could not be made for residential care accommodation or be used to employ family members living in the same household. However, the Care Act 2014 changes this position and allows payments to be made to family members in the same household in certain circumstances. The Statutory Guidance (para 12.36) explains that: This allows people to pay a close family member living in the same household to provide management and/or administrative support to the direct payment holder in cases where the local authority determines this to be necessary. The Care Act 2014 states that direct payments will be available to purchase residential care placements. This provision was piloted in several Local Authorities in England but delayed until 2020. Direct payments may be used to purchase short-term residential care and people who live in care homes can receive direct payments for non-residential care services (e.g. to try out independent living options).

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Update date: Mon, 2019-05-20

D6. Income maintenance

The UK has a complex system of contributory, non-contributory and income-related benefits and entitlements administered directly by the state. Non-contributory and income-related disability cash benefits are funded from general taxation. The Department of Work and Pensions manages disability welfare benefits and contributions are collected by HM Revenue and Customs. Employment and Support Allowance (ESA) is a conditional benefit paid to people of working age on the basis of either National Insurance contributions or income. Applicants are assessed in relation to their capacity to work, are grouped according to this and receive varying amounts of money accompanied by conditional expectations about work related activity. There has been a period of major reforms with regard to all welfare benefit provision with commitment to 'overhaul the benefit system to promote work and personal responsibility'. The main vehicle for this has been the Welfare Reform Act 2012. Existing means-tested benefits are being replaced with a roll-out of a combined Universal Credit system, topped up to higher amounts on the basis of disability, caring or childcare responsibilities, and housing costs. These provisions apply throughout the UK, although social security is largely devolved in Northern Ireland.

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Update date: Mon, 2019-05-20

D7. Additional costs

Personal Independence Payment (PIP) is a tax-free non-means-tested benefit for disabled persons aged 16-64. The Welfare Reform Act 2012 abolished Disability Living Allowance (DLA) for people in this age group, with progressive implementation since 2013. DLA remains for those aged under 16. Persons aged 65 and over may apply for Attendance Allowance (AA). PIP helps to meet additional costs of living with impairment and has two separate components: one for care costs and one for mobility costs. Eligibility is determined by a points-based system of individual functional assessment. DLA/PIP is explicitly intended to fund the additional costs of living with impairment, whether in or out of work. Some disabled people are also eligible for relevant discounts and tax reductions (such as a TV licence fee concession for blind people).

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Update date: Mon, 2019-05-20

D8. Retirement income

There is no specific retirement pension scheme for disabled people in the UK. Entitlement to the standard (non-earnings related) State Pension is accrued on the basis of the number of years’ National Insurance contributions, which may be credited in or out of work. There is no concession to minimum state pension age. However, low income pensioners who qualify for means-tested Pension Credit may be entitled to a disability premium (e.g. if they also receive a qualifying disability benefit).

Attendance Allowance is a tax-free benefit that is paid to disabled people aged 65 or over to provide help with personal care. It is available across the whole of the UK and paid at a higher or lower rate, according to the degree of assistance needed. To be eligible the applicant needs to require assistance with activities such as washing, getting in or out of the bath or shower, dressing, eating, getting to and using the toilet, or communicating their needs. It is also paid to people who need supervision to remain safe. For recipients of either Industrial Injuries Disablement Benefit or War Disablement Pension there is the possibility of a Constant Attendance Allowance, paid when the applicant needs daily assistance with things such as home nursing or meals at home and they are medically assessed as being 100% disabled.

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Update date: Mon, 2019-05-20

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