Inclusion Scotland’s (IS) Response to the Draft UK report on the UN Convention on rights for Disabled People (UNCRDP)
Inclusion Scotlandis a network of local disabled people’s organisations and disabled individuals and exists to promote disabled people’s rights by bringing disabled people into direct contact with policy makers. We welcome the opportunity to respond to the consultation on the UK government’s draft report on the UNCRDP.
1.Inclusion Scotland recognises the added value that the UNCRDP brings for disabled people towards the realisation of rights in promotion of the principles of independent living and welcomes the opportunity to respond to the UK government’s report.
A general concern, however, is the very low number of human rights lawyers in Scotlandwho are willing to take onpro-bono/ legal aid cases in whichviolations of one or more human rights in the Convention (or other Conventions and Acts, e.g. the HRA 1998) may have taken place against a disabled person directly, or against their families (indirectly). Many of our members perceive the Convention without access to justice to be of limited use in terms of achieving human rights realisation/preventing further rights violations in the UK. This is discussed later in this response, but needs highlighting here as this lack, along with reforms to legal aid being proposed by the UK government, have serious implications for the realisation of any of the rights contained in the Convention during a time of cuts to public services and welfare reform.
Some reserved and Scottish policies (some which are highlighted within the UK Government draft report), threatenthe rights contained within the Convention. Herein we raise key concerns for our membership and identify the particular articles contained within the Convention that are threatened or are/may be breached by such policies. Where relevant, we refer to the claims made within the UK government’s report.
1.1As a membership organisation, consultation on the contents of our responsesforms an integral part of our work. We have therefore highlighted some key concerns identified by our membership during consultation with them. We were only able to achieve a limited number of consultations, due to the shorter consultation period in the first place, and then the extension by one month only announced at the end of this consultation period.
1.2The ODI needs to develop a clearer policy and monitoring on communication as it advertises that accessible formats of the report are available on request (e.g. audio), but when we inquired, we were told that an audio version would only be developed upon request, and therefore could not be delivered in time for the end of the consultation. We find this unacceptable given this report concerns disabled people directly; further, through such inaction the ODI dismisses the right to accessibility within this Convention and it has also failed in its commitments in the Equality Act (2010).
2.Key concerns
In drafting our response to this document we have paid particular attention to issues raised by the Scottish government within it; we also address the concernsour membership here in Scotland have raisedin relation to reserved policy areas that directly impact their rights under this Convention.
This consultation response contains a selection of IS’ key concerns, and does not cover every issue that we are concerned about. Our key concerns aboutthe Scottish and UK governments’ delivery on the Convention, are, in no particular order: Welfare reform, ‘Personalisation’ & Care services, Communication, Health, Education, Employability,access to equitable Justice/ equity before the lawand Independent Living.
2.1 Welfare Reform
The replacement for Disability Living Allowance (Personal Independence Payment (PIP)) aims to cut the amount of PIPpaid to working age adults by 20% but it is likely that many more than 20% of disabled people may be subject to loss of DLA/PIP because of new eligibility assessment measures and a change from three to two main rates of payment[1] (that continue to include both care and mobility components)[2].
The DWP’s proposed assessment criteria for the new PIP takes wider provision into account e.g. it looks less at the ‘ability to walk’ and more at the ability to ‘get around’; e.g. if someone has an NHS wheelchair, they would be deemed to ‘get around’. It neither factors in costs of procuring nor maintaining manual aids e.g. equipment used to transfer from wheelchair to chair, the wider environment or the effects on the person using them (articles 19 & 20). A key concern we have heard is that the new PIP may provide for disabled people to ‘survive’, but not to ‘live’ (see, 2.9).
Work capability assessments have been criticised because they do not take into account mental health and fluctuating conditions as well as physical impairments. There is fear that the new PIP assessments will do the same.
Other categories in the proposed criteria also would also ignore effects or costs associated with impairments/conditions, by focusing narrowly on tasks that would restrict independent living. The criteria fail 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 (Articles 5 and 28).
A recent report published by the Citizens’ Advice Bureau (CAB, 2011) provides evidence and testimony on unfair and inadequate health assessmentsundertaken through Work Capability Assessments for Employment and Support Allowance (ESA). ‘Scottish CAB have advised many clients who have been found fit for work in their work capability assessment despite suffering from serious health conditions and face major barriers to work…Bureaux have reported a worrying trend where clients who win their appeal [to have the decision that they are fit to work overturned] are quickly given a new assessment and found fit for work again or are repeatedly re-assessed’.[3] This puts people whose health is already frail at risk of deteriorating (a clear breach of the right to rehabilitation contained in Article 26), and could potentially also affect the levels of care support provision that people receive due to the impact the change may have on their DLA (PIP) and Local Authority funded support.
Other concerns raised amongst disabled people and DPO’s about the work capability assessments surround the inherent ambiguity in how the DWP monitors, and cost-recovers from, the companies when decisions are successfully appealed by claimants. People are concerned that this will carry over to the management of DLA/ PIP assessments. They further feel defrauded by the government on this, when they stand to lose income themselves. Related to this is the targets system that assessors will use for PIP, which, for the work capability assessments, have resulted in far more people being removed from incapacity benefits than the government predicted(69% as opposed to a projected 49%). As many as one in five working age recipients of DLA in Scotlandmay stand to lose their benefits when the new assessments take place. The high numbers of people moving off Incapacity Benefit through current work capability assessments include mistakes reflected in the high rates (40% UK wide and up to 70% in Scotland)of successful appeals. One comment shows how the member views this as a priority the government should address: ‘'One of the BIGGEST points is: Our government are giving bonuses (or bribes) to stop/reduce benefit payments. This must be made illegal'.[4]
Care charges (falling under the Scottish and Local Governments’ remits) reduce disabled people’s available income particularly when they enter employment. The guidance available to local authorities in England allows disabled people to retain more of their earnings when care charges are being assessed. The current care charging guidance in Scotland, taken together with the recent cuts to the Independent Living Fund (ILF), have reduced the income of some disabled people in employment to below Income Support levels (after housing costs, travel to work, etc. are taken into account) (Articles 5, 19 and 28).
Disabled people are and will be disproportionately affected by the cuts labelled as ‘welfare reform’, both in terms of their income and the services they receive. Taken in sum, such “regressive government policies seriously undermine the rights of disabled people and the UN [Convention]".[5]
2.2 ‘Personalisation’ & Social Care
A key concern often raised by our members is the limited portability of care services, resulting in a post-code lottery of care provision, and infringing the rights to personal mobility (article 20).‘The inability to ‘port’ care packages means that disabled people do not enjoy their rights 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” (Article 19)’.[6]There are also potential effects on a number of other rights contained within the Convention, such as the right to respect for the home and the family (article 23), and being subject to varying funding depending on your LA can result in restricted access to accessible housing.
There has been limited uptake of self-directed support (SDS) and this may be related to the range of impairments and conditions and the lack of responsiveness to how these impact on people’s lives. For instance, there is lower uptake amongst mental health service users than for those with more stable conditions and impairments, as mental illnesses and conditions tend to be more variable. Mental health service users have the same rights to this support as others and the government therefore needs to do more to encourage uptake and to make renewing SDS easier.
Care is regulated throughout the UK and a description of the work of the Scottish Commission for the Regulation of Care (and other UK Commissions) is provided in point 123 of the draft report. Yet recent media stories regarding private care homes in England have highlighted a lack of uniformity in the delivery of training within, and patchy regulation and inspection of, care settings. It is unclear in the draft how the UK and Scottish Governments (i.e. State parties) promote the training of professionals and staff working with persons with disabilities in the rights recognized in this Convention so as to better provide the assistance and services guaranteed by those rights’ in care and other settings (e.g. health, social services). ‘Whisltle-blowing’ is viewed as high risk to survival for those members of IS who have worked themselves in these settings. Training for staff that work with disabled people is seen as patchy and negatively impacted by local authority procurement strategies (i.e. cheap does not equal quality services). The concept of ‘personalisation’ of care thus remains unclear as people’s choices are limited to the cheapest options available as quality services are priced out of the market.
In Scotland, there have been reports recently of under-provision of care services for disabled people in receipt of Local Authority services due to a refocusing of priority on critical levels of support, i.e. ‘life and limb’ provision. As well as impacting the right to live independently and be included in the community that such services might support, a large number of people will, for lack of early intervention, eventually become critical, and this will impact on the costs involved in their care.Italso leads to inhumane and degrading treatment (article 17) that challenges the individual’s dignity, such as leaving a person in an incontinence pad or on a chemical toilet in their living room for a full day because they are being left without the support they need.
2.3 Communication
Communication of information is crucial to independent living as envisaged in the Convention and by the Scottish government. However, there are several policy areas in which accessible communication may be denied to disabled people, the consequences of which have the potential to impact on a much wider range of rights than that of access to information contained within Article 21.
First, in the drafting of policy, the accessibility of information for consultation is crucial to realising the right to accessibility to information (articles 9; 21). A few good practice initiatives cannot make up for the lack of information available in other areas. For example, some Government information leaflets - e.g. for the National Conversation - are still routinely ignoring/breaking existing guidance on accessible information (articles 9 and 29), and the NHS is still communicating with blind people in inappropriate formats[7](whilst this is a clear breach of article 9, it impacts on a number of other rights, such as respect for privacy in article 22, and the rights contained within articles 17 and 19).
The current Patients Rights (Scotland) Bill is highlighted within the report as addressing the right to Equal recognition before the law (Article 12), yet within the Bill, NHS staff only need to have ‘due regard’ to a person’s request for communication support. Were this request to be ignored, the accessibility to advice and support to disabled patients would be severely curtailed and their right to access to information would be infringed under this law.
The code of practice accompanying the Adult Support and Protection (Scotland) Act (2007) has the potential to undermine Section 8(2) of this same Act, which provides that an adult at risk is not required to answer any questions at interviews, and that the adult must be informed of that fact before the interview commences. It does this by stating that requirements of the adult for BSL, translation, or documents to be made available in accessible formats (e.g. into Braille, easy read, or audio formats) only have to be considered by the local authority. If a decision not to meet these requirements based on e.g. cost resulted in the adult at risk or the officer not being able to understand the communication of their right to refuse to be interviewed, a clear transgression of all the rights contained in article 21 (to freedom of expression and opinion, and access to information), and also to the rights to equal recognition in the law and legal capacity in article 12.
2.4 Health (article 25)
Point 207 in the draft report raises several initiatives to promote the delivery of ‘safe, effective and person-centred care services for everyone’[8] and describes the rights contained in the Disability Discrimination Act. ‘Achieving Fair Access’ (Fair for All-Disability 2006[9]) may provide ‘guidance requiring service providers to make reasonable adjustments for disabled people in accessing goods, facilities and services’, but it is unclear what the Scottish government has been doing to review whether or not the guidance is being followed in practice.
The government’s draft report contains details of the Patient Rights (Scotland) Bill and yet, as noted above (communication), inappropriate modes of communication are regularly used in contacting blind patients, even in cases in which the Local Health Authority are aware that the person is blind. The right to privacy is infringed where a blind or visually impaired person has to ask friends/family to read aloud a private letter from their doctor.
The equality training (NES) for post-graduate medical professionals in receipt of specialist medical training (referred to in point 217 of the draft report) is limited, and a broader training for medical professionals and staff who will inevitably come into contact with disabled people should be a matter of course. An improvement in this provision might bypass the denial of rights experienced in examples given above.
Another example of this kind of inconsistent delivery is given in point 226 in reference to article 26 (right to habilitation and rehabilitation), where it is stated that the ‘Delivery Framework for Adult Rehabilitation (2007) is implemented by employing a rehabilitation co-ordinator in ‘almost’ (emphasis added) every health board. Again, it is a post-code lottery on how adult rehabilitation for people with long-term conditions is met and monitored, and inconsistency may impact on the realisation of article 26.
In addition, the management of rehabilitation is seen as lacking. For instance, IS members debated the management of ‘Integrated Care Pathways’ (ICP’s), a system for multidisciplinary and multiagency care management run by NHS Scotland. They felt that due to the lack of monitoring of discharge plans and poor follow-up with patients following discharge, NHS is not realising its aims on ICP’s with regard to rehabilitation. For a multi-disciplinary system, ICP’s are also inherently medically focussed and provide very little evidence of the social barriers to rehabilitation.
Inclusion Scotland are concerned by the use of drug chemical ‘coshes’ for children with conditions such as ADHD and for adults in residential care.
2.5 Education
Learning disabled children are labelled as having behaviour problems because teachers do not know how to deal with them. Currently, as in the rest of the UK, disability equality training - which might give the teachers the skills and knowledge to address such issues -is not a mandatory part of training of teachers and other educators in Scotland