This Response Has Been Prepared by the Independent Living in Scotland (Ilis) Project Team

UK Joint Committee on Human Rights: Inquiry into the Implementation of the Right of Disabled People to Independent Living: Response from the Independent Living in Scotland project (April 2011)

This response has been prepared by the Independent Living in Scotland (ILiS) Project Team on behalf of the ILiS Steering Group
Independent Living in Scotland Project: Summary of response

1. Independent living offers a principled, proactive, cross cutting human rights based approach to policy making that strives to ensure disabled people have the same freedom, choice, dignity and control, as non disabled people. We welcome such an approach to policy making.

1. The Scottish Government’s Core Reference Group (CRG) on Independent Living has provided a shared, national focal point on independent living in Scotland; affecting conceptual change around independent living and identifying that disabled people are crucial assets to the progression of the agenda.

1. Localism can result in approaches to provision that mean disabled people’s human rights are inconsistently met or even denied. This is highlighted, for example, in the issues around portability of care and support.

1. Support and provision continues to operate in silos yet independent living promotes a joined up approach.

1. The gulf between demand and supply will continue to grow with focus on raising thresholds, providing supportonly to those who meet the “life and limb” criteria. Independent living promotes a preventative approach with the focus on empowerment and inclusive citizenship essential to reduce demand. We note examples of where this is not the driver, creating resultingbarriers to the realization of the UNCRPD

1. Co-production is central to the implementation of independent living. Co-production also aids cross cutting, innovative and preventative approaches. This is underpinned in Article 4(3) of the UNCRPD and is crucial to the implementation of the wider UNCRPD.

1. Leadership, within the movement itself and within the corporate management of public bodies; joined up policy, provision and budgeting; and promotion of the rights and responsibilities outlined in the UNCRPD are essential to effect it’s successful implementation.

1. We recommend that the UK bring the rights in the UNCRPD into domestic law at the earliest possible opportunity. We also recommend a statutory right for all disabled people to access and benefit from independent advice and advocacy services, including from their peers.

Contents

1. Independent Living in Scotland
2. Independent Living as the basis for policy and practise
3. Independent living policy and the implementation of the UNCRPD
4. Improvements in policy and practise to support independent living

1. Independent living in Scotland

The Independent Living in Scotland project

1.1.The Independent Living in Scotland project funded by the Scottish Government, hosted by the Equality and Human Rights Commission (EHRC) and steered by a group of disabled people. It is part of the wider Scottish Government initiative on independent living. It aims to support disabled people in Scotland to have their voices heard and to build the disabled people’s Independent Living Movement (ILM)[1].

1.2.This response should be read alongside “Ready for Action”, a policy document, developed by disabled people to highlight what needs to change in order for independent living to be a reality[2] and the ILiS responses to the Scottish Parliament’s Finance Committee Inquiry into Preventative Spending and the Scottish Government’s Commission on Public Sector Reform in Scotland[3].

The wider independent living in Scotland agenda

1.3.The project is part of a wider Scottish Government initiative to mainstream the principles and practices of independent living within the general economic and social policy of Scotland (see para 4 – 11 of the Scottish Government’s response to your inquiry for more details). Scotland’s commitment to independent living is set out in Scotland’s “Vision for Independent Living”:

Independent living

1.4.Independent Living means “disabled people of all ages having the same freedom, choice, dignity and control as other citizens at home, at work, and in the community. It does not mean living by yourself, or fending for yourself. It means rights to practical assistance and support to participate in society and live an ordinary life”. With such support, disabled people can exercise their rights and duties of citizenship via their full and equal participation in the civic and economic life of Scotland – thereby changing the public misperception of them as being a drain on society’s resources rather than an active contributor.

1.5.The principles of independent living, i.e. freedom, choice, dignity and control, do not only relate to the specific services and provisions for disabled people, but to the whole of disabled people’s interactions with society; its organisations, facilities and structures; and every aspect of their quality and equality of life[4]:

• Full access to our environment
• Fully accessible transport
• Technical aids and equipment
• Accessible and adapted housing
• Personal assistance
• Inclusive education and training
• An income, including income within the state-benefit system for those unable to work
• Equal opportunities for employment
• Accessible and readily available information
• Advocacy and working towards self-advocacy
• Counselling, including peer counselling
• Accessible and inclusive healthcare provision
• Communication and appropriate support for communication
• Civic participation

1. Independent living as the basis for policy and practice

Independent living and human rights

2.1Independent living recognizes that all of these areas of particular rights are crucial for disabled people to realise theirhuman rights. Without such a cross cutting approach, equal enjoyment of human rights is not possible for disabled people:

“They have just introduced new low floor buses round here, but the council are cutting my support package, they said they dont have enough money, what use is a low floor bus, if I can’t get out of bed in the morning?[5]”

2.2Further, independent living recognises and promotes a preventative and proactive approach to supporting disabled people to realise their human rights[6].

2.3It is welcomed that the right to independent living is underpinned by Human Rights protections e.g. the European Convention on Human Rights and the Human Rights Act. The added value of the UNCRPD brings the reality for disabled people to the fore in the interpretation of human rights and supports the principles of independent living as key drivers in the realisation of these rights.

Should the right to independent living continue to form the basis for Government policy on disability in the UK?

2.4Independent living offers a principled, proactive, cross cutting, human rights based approach to policy making that strives to ensure disabled people have the same freedom, choice, dignity and control, as non disabled people. We welcome such an approach to policy making.

2.5Despite its value and the human rights protections that underpin it, the right to independent living is not yet realised.

2.6The interim report of the Life Opportunities Survey[7] states that:

1. 17% of disabled adults experienced restrictions in their learning opportunities compared with 9% of non disabled adults
2. 74% of disabled adults experienced restrictions in using transport compared with 58% of non disabled adults
3. 12% of disabled adults experienced difficulty accessing rooms within their home or difficulty getting in or out of their home compared with 1% of non disabled adults
4. 29% of disabled adults experienced a restriction to accessing buildings outside their home compared with 7% of adults without impairments

2.7Further:

1. When the extra costs of being disabled are taken into account, 47.5% of families with disabled people in the household, live in poverty[8]
2. Only 50% of disabled people of working age are in work, compared with 80% of non disabled people of working age[9]
3. Disabled people officially constitute only 6% of formal volunteers and around 4.3% of public appointments across Britain. This is compared to 20% of the population at large[10]
4. 23% of disabled people have no qualifications compared to 9% of non disabled people[11]
5. By the age of 26, young disabled people are more than three times as likely as other young people to agree with the statement “whatever I do has no real effect on what happens to me”[12]. It should be noted that for many specific groups, e.g. people with learning disabilities and mental ill health, the stats can be much more extreme

2.8This has implications for; the human rights obligations underpinning independent living; the reality of the human rights of disabled people;and the future of policy and practice aimed at implementing the UNCRPD.

1. Independent living policy and the implementation of the UNCRPD

Do existing policy statements, including the Independent Living Strategy, represent a coherent policy towards the implementation of the obligations in Article 19 of the UN Disability Rights Convention?Could current policy be improved? If so, how?

3.1There are various policies and practicses that impact on the realisation of Article 19; some focussing on independent living at a strategic level e.g. the independent living agenda in Scotland (1.3) and the UK strategy on independent living;some in relation to economic policy and approaches and others on the structures laid out in 1.5.

Overarching policy on independent living

3.2Whilst policy direction in Scotland has focussed on independent living in the past 3 years (see 1.3), evidence shows that independent living for the majority of disabled people is still not the reality[13]. Scottish political, social and organisational structures have been slow to meet the needs of disabled people and to recognise their rights[14]. Further, a recent report into compliance with the Human Rights Act in Scotland, carried out by 4 third sector organisations, states that “there is little evidence to suggest that human rights are being mainstreamed across the public sector in Scotland”[15].

3.3At a national level, the Core Reference Group (CRG) on Independent Living has provided a shared, national focal point on independent living in Scotland. This has been useful inaffecting conceptual change around independent living, recognizing that it is a corporate, strategic issue, building relationships and coproducing an approach to the issues. It has also identified that disabled people have a crucial insight to the issues that affect them and that they are assets, essential to the progression of the agenda. We suggest such a cross-cutting approach continues.

3.4However, the group has been less effective in achieving outcomes across the wider public sector, on a local level or in achieving ‘tangible’ outcomes on independent living. Helpfully, the CRG is now being evaluated to determine shared future outcomes to address this issue.

Prevention vs. life and limb provision(please see ILiS response to the Scottish Parliament’s Finance Committee Inquiry into Preventative Spending[16])

3.5Retrenchment into the more “traditional” economies of cutting, trimming and delay, leads to restricting demand, by raising thresholds. Disabled people are left to rely on informal support systems, have less opportunities to participate in their community and are pushed further into poverty; accumulating more need for both themselves and informal supporters, in later years.

“Not being able to get out makes you so much less confident and unable to cope”

“I fear poverty of opportunity as well as no money”[17]

3.6The gulf between demand and supply, therefore, grows.This approach segregates disabled people within their own homes or day centres denying them the opportunity to participate within the community and to realise their rights in the UNCRPD. Despite this, ‘life and limb’ is prevalent in terms of access to support for independent living today.

3.7Disabled People’s Organizations: Many Disabled People’s Organisations, often those providing support that prevents future dependency, e.g. advocacy organisations, are losing their funding[18]. Yet, empowering disabled people enables them to contribute to the civic and economic life of their community, coproducing solutions andlowering demand for greater state provision in later crisis situations:

“GDA increases your confidence in yourself as you feel empowered and there is strength gained from the number of people you meet via GDA”

“GDA understands that bynurturing people to share their experiences networks widen, understanding of rights increases and individual abilities develop. People are revitalised though this informal mentoring system.”[19]

3.8Community care: Many disabled people do not receive “community support services, including personal assistance, necessary to support living and inclusion in the community and to prevent isolation or segregation from the community”. This means that they are not able to“make choices equal to others” (UNCRPD)[20]. Local authorities are reprioritising resources to those who need critical levels of support, i.e. ‘life and limb’ provision. Thiscreates false economy; it builds up a backlog of people who, for lack of early intervention, eventually become critical. Further, in some case, even ‘life and limb’ support is being cut back to provision that challenges the dignity of the individual:

“When my social worker told me that they had to cut budgets I had no idea that would mean things were going to get so bad. I need help to go to the toilet. There is not enough money to take me to toilet more than twice a day. When my carer comes in to me in the morning, I go to the toilet and before she goes, she puts on an incontinence pad for me so that I can do the toilet in my chair. I have been told to wet or soil myself. When they come back at night to make my dinner, they change my pad. I am so embarrassed; I don’t let my friends visit me anymore. I am so isolated and sometimes I can’t see a way out”[21].

3.9A further example of ‘cutting and trimming’ that compounds this situation is the closure of the ILF to new applicants. Previously, basic provision would have been ‘topped up’ by the Independent Living Fund (ILF), supporting disabled people to participate fully in society. Without the support of the ILF, and with less money and higher thresholds at LA level, many disabled people will be left with basic support, or even be taken into residential care.

3.10Welfare Reform: Much of the Welfare Reform agenda proposes significant ‘cuts and trims’ to the support available to and the income of disabled people. The UK Disabled People’s Council found that 90% of DPOs feared that cuts would have a negative impact on disabled people[22].Disabled people face a ‘double whammy’ when it comes to cuts, in their pocket and in their services: they are disproportionately affected by them[23].

3.11The new assessment for DLA (PIP) aims to cut the amount of PIP available by 20% and it is likely that this figure will be higher[24]. Further, the assessment takes wider provision into account e.g. itlooks less at the ‘ability to walk’ and more at the ability to ‘get around’; e.g. if someone has an NHS wheelchair, theywould be deemed to ‘get around’, so this would result in a reduction in their PIP. This approach fails to consider reductions and constraints on other budgets and the individual freedom afforded by DLA currently, to top-up/purchase more suitable provision than is available through statutory organisations. It also fails to take into account the wider environment which can and often does restrict wheelchair users’ freedom of movement. Further, the ‘cost of disability’would be transferred from central e.g. DWP, to devolved or local Governments; e.g. the NHS or care and support who cannot meet the demand. Disabled people will be pushed further into poverty and they will not have access to the crucial support they need to realise their rights as outlined in the UNCRPD.

3.12Against this backdrop of both the poverty and inequality of disabled people as well as reductions in services to support them, further attacks onincome broaden the gap between their rights and their actual experience of them; such “regressive government policies seriously undermine the rights of disabled people and the UN Convention on the Rights of Disabled People"[25].

Charges for services

3.13Disabled people are not only seeing fewer services and less money, but higher charges for them. Many local authorities are looking to the individual income of disabled people to meet demand. This leaves many disabled people with impossible human rights choices between paying for their home and family, or paying for their care.

“My local authority are allowing us £109 a week to live on and taking 75%,i.e. the rest of our income, towards care. I feel this isfar too high and as a home owner with a disability andwill give me a bigproblem, and I guess countless others”

“Today I have received a letter from Community Care Finance, Glasgow City Council stating that I will being paying 50% more for my home care charges , starting fromApril 2011”[26]

Localism and inconsistency

3.14“It’s bad enough when we don’t have the rights but it’s worse when we think we can rely on them but someone has chosen not to implement them. I would rather know no buses in my area were accessible and not try to get one, than wait for the one promised bus a day that never turned up”[27].

3.15There are clear variances in how the rights set out in the UNCRPD are translated into action across the public sector. It is not clear who is accountable when these rights are not met (please see the ILiS response to the Scottish Government’s strategy for Self Directed Support for an example of this)[28]. This lack of clear accountability means disabled people are denied remedy and access to justice in relation to their rights. This is further compounded by the limited access to the justice system itself, as reported by disabled people[29].