218. A significant number of witnesses told us that the main reason why their human rights are at risk is because there are significant barriers to their participation in the wider community. They explained that adults with learning disabilities have fewer opportunities to make the choices and decisions that those without learning disabilities would consider part of 'ordinary life'. These barriers included funding and inability to access support, negative attitudes and stereotypes (considered in Chapter 4) and fear of crime (considered in Chapter 7).

219. We now consider four additional barriers which we consider capable of undermining adults with learning disabilities' rights: lack of accessible information; lack of access to independent advocacy; access to voting rights; and lack of support for participation in the local community. We explain below how, by addressing some of these barriers, people with learning disabilities could be empowered to speak up for their own human rights and to enhance protection of those rights.

Access to information

220. A recurring theme in the evidence was the lack of easy to understand, illustrated information to enable people with learning disabilities (most of whom have some difficulties with reading) to have more choice and control over their everyday lives. If people with learning disabilities are really to enjoy life like other people, as Government policy intends, then they also need easy to understand information on all the issues related to day-to-day living "such as health, housing, benefits, employment, crime and safety"[339] as well as "access to a football stadium or civil rights such as getting married".[340]

221. Valuing People Now states that:

Providing accessible information is essential if people are to have more choice and control over their lives and is an implicit expectation of the Disability Discrimination Act.[341]

222. The Cambridgeshire Parliament of people with learning disabilities told us:

We need to know the same information as everyone else, but we need to have it broken down and with pictures.[342]

223. Cheshire and Wirral Partnership NHS Trust said:

Without accessible information we are reducing peoples ability to be empowered, take control of their lives and advocate for themselves…we make people over reliant on carers or others.[343]

224. The Disability Rights Commission told us:

Not enough groups make their information easy to read and understand. Groups like the Government and local councils should always do this.[344]

225. Under the Disability Discrimination Act 1995 (as amended), the statutory obligation on providers of goods and services to the public to make reasonable adjustments to enable disabled people to use their services may, in some circumstances, require that information is made available to people with learning disabilities in an easy to understand, written, or other appropriate format. We consider that the provision of accessible information for people with learning disabilities should be standard practice for public bodies such as the Government departments, NHS bodies and local authorities, who are all subject to this duty to make reasonable adjustments, and are also subject to the duty to promote disability equality.

226. With the introduction of the Disability Discrimination Act (as amended) and the duty on providers of goods and services to make reasonable adjustments to meet the needs of people with learning disabilities, we believe that adults with learning disabilities should be able to obtain the information they need in formats they can understand. We consider that the statutory obligation to make reasonable adjustments includes ensuring that information is available in an easy to understand format. This duty is reinforced in relation to public authorities, by the Disability Equality Duty. We are deeply concerned that this does not reflect the experiences of our witnesses.

227. A member of Macclesfield Speaking Up Speaking Out Group told us:

I recently had an operation…I need a special diet. I couldn't read the menu [in hospital] because I can't read and write, and kept telling the staff, but I only got the right food on the last day[345]

228. Members of CHANGE said:

Benefits information is not accessible. There is no information or letters that have pictures and easy words [346]

229. The absence of accessible information (from statutory authorities and private voluntary or commercial organisations) may have potentially disastrous consequences: for example, someone taking too high a dose of the medication prescribed to them.[347] But on an everyday basis, it makes 'an ordinary life' hard to achieve. It makes it difficult for people with learning disabilities to open a bank account.[348] It makes it hard for people to make decisions for themselves.[349] It increases people's dependency on others to explain things and violates their privacy, as their personal information is shared.[350] It makes it difficult to for adults with learning disabilities to make complaints.[351] The provision of accessible information can help in all these cases, and also help people protect themselves, for example against crime and abuse.[352]

230. We welcome the statement in Valuing People Now[353] that:

Government will work to improve its performance in this area [of providing accessible information] and expects all other public, voluntary and private bodies to do the same - in particular by employing self-advocacy organizations to advise and develop materials.

231. We are disappointed by the lack of specificity in this statement and at the absence of any reference to goals, targets or identifiable commitments to increase the provision of accessible information in the Action Summary relating to this section of Valuing People Now. It is not clear how progress is to be made or measured in the absence of any specific commitments. We recommend that such commitments are included in the revised version of Valuing People Now to be produced later in 2008, following consultation.

232. Given the considerable evidence we have received on the importance of accessible information for people with learning disabilities we recommend that it receive appropriate attention in the ODI's forthcoming Independent Living Review Strategy.

233. In addition, we call on the ODI to ensure that statutory authorities and others are fulfilling their duties under the Disability Discrimination Act and the Disability Equality Duty by making information available in formats that are accessible to people with learning disabilities. This can be through providing it themselves, by commissioning it from others, or requiring it as part of contractual agreements. The ODI should monitor and review progress as part of an overall strategy for the provision of accessible information.

234. We also call upon the Healthcare Commission and the Commission for Social Care Inspection to ensure that scrutiny of the availability of accessible information (including easy to understand information on what is abusive practice and what people can do about it) is routinely included in the course of their inspections of providers of health and social care.

ACCESSIBLE INFORMATION ON HUMAN RIGHTS

235. In Chapter 3, we talked about the importance of increasing understanding of human rights principles and legal standards by adults with learning disabilities. From the evidence we received, it seemed information about human rights, specifically aimed at people with learning disabilities, was scarce. For example, Values Into Action said:

I think it is fair to say that in the 50 groups that we visited there was very little awareness of the Human Rights Act among people with learning difficulties themselves and professionals.[354]

236. A positive exception was the work undertaken by Values Into Action providing information and training on legal and human rights to learning disabilities self-advocacy groups in different parts of the country.[355]

237. We received evidence that people with learning disabilities are keenly interested in human rights and information about rights and responsibilities.[356] But we were disappointed to learn how difficult it is for them to find reliable and accessible information on their legal rights and responsibilities, the implications of legislation such as the Human Rights Act for them, and what they can do to defend or pursue their rights.

238. Empowering people with learning disabilities to stand up for their human rights is important. Although, in some places in this report, we have described this group as vulnerable, we have been particularly impressed by the role played by self-advocacy groups and our individual witnesses with learning disabilities, in telling us how their rights could best be protected. We are aware that some people with learning disabilities will not be able to understand information about human rights by themselves, even if it is in an easy read, illustrated or audio format. They will need to have the information explained and have support to understand it.[357]

239. Where vulnerable people are involved, particularly in relation to public authorities or service providers, principal responsibility for securing respect for the rights of service users must be with the provider. In our view, there is a clear need for staff to receive more information on human rights.

240. Cheshire and Wirral NHS Partnership Trust learning disabilities division told us:

Despite there being a national drive for accessible information there is no central steer or indeed commitment to ensuring information within health care settings is available in forms accessible to people with learning disabilities.[358]

241. These concerns are indicative of a disappointing lack of central leadership on this issue. We were deeply disappointed that the Office for Disability Issues could not provide an accessible summary of the United Nations Convention on the Rights of Persons with Disabilities until more than a year after the Convention was agreed. We were equally concerned that the Easy Read guide to the Human Rights Act, prepared by the Ministry of Justice, was not available to be downloaded from the Ministry of Justice website for some time. We raised these concerns with the Minister for Human Rights and the Minister for Disabled People and both of these problems have now been resolved.[359]

242. We welcome the recent publications from the Office for Disability Issues on improving information for disabled people, including the document aimed at public sector communicators and practitioners. These set out five principles for producing better information for disabled people:

Principle 1: ensure that disabled people are involved from the start.

Principle 2: provide information through a range of channels and formats.

Principle 3: ensure your information meets users' needs.

Principle 4: clearly signpost other services.

Principle 5: always define responsibility for information provision.[360]

These principles should be followed both within and beyond Government.

243. We asked the Minister for Disabled People whether there was any cross-Government strategy on the provision of easy read information on rights. She told us that she would "probably be less than honest if she said that there was a strategy." She explained:

There is increasing awareness of the importance of alternative formats and that is something. that the Office for Disability Issues is working on. Certainly, we have encouraged other departments, where they are publishing information and documents, to look at alternative formats.[361]

244. We were dismayed by the Minister's frank admission that not only is there no Government strategy on the provision of accessible information on rights, there is no wider cross-Government strategy on providing information in an accessible format. We accept that it can sometimes be difficult to provide information in this way quickly, consultation with relevant stakeholders will often be appropriate and necessary, and that, sometimes, the most appropriate format will not be the written word. Nevertheless, we expect central Government to provide a lead and to set a good example by ensuring that people with learning disabilities have equal access to information in appropriate formats, as required by the Disability Discrimination Act and the Disability Equality Duty.

245. We recommend that the Office for Disability Issues work with the Office of the National Director for Learning Disabilities at the Department of Health and the Cabinet Office to formulate and implement a cross-Government strategy for the provision and distribution of easy to understand, accessible information, by Government (and other) bodies, as a matter of urgency. We recommend that a specific strategy on accessible information about human rights and equality is formulated by the Office of Disability Issues, working with the Ministry of Justice. The Equality and Human Rights Commission should be closely involved in the development of these strategies and should monitor their implementation in practice.

Access to independent advocacy

246. Access to easy to understand information is one step in securing people's human rights, but for many people with learning disabilities it will not be enough; they will need advocacy, help and support to defend or claim their rights.[363] As Speaking Up For Yourself in Brent told us:

information in itself will not automatically mean that disabled people with learning difficulties will have the strength to stand up for their rights. Many of us have grown up accepting limitations being imposed upon us by parents, schools and service providers and therefore not see them as possible human rights violations.[364]

247. Many witnesses were clear that accessible information and independent advocacy needed to go hand in hand. People needed support during assessments and reviews, in taking decisions, making complaints and in many other ways, if they were to secure their rights.[365] Advocates were instrumental in challenging inappropriate restraint (e.g. people being strapped to a chair or wheelchair; or being forced to wear splints, to prevent putting hands in mouth); intervening for better health care; addressing lack of privacy or risk of abuse from others; securing the benefits to which people were entitled; supporting personal relationships; helping parents receive the support they need to get their children returned to them[366] or supporting young people in the transition from school to adult life; helping adults with housing problems; helping individuals involved in the protection of vulnerable adults process; and helping people make video statements at the local police station and with court appearances.[367]

248. Independent advocacy is particularly important for people with profound and multiple disabilities, who do not use speech to communicate. They are not well represented by self advocacy groups, on Partnership Boards, or on other national, regional and local fora of people with learning disabilities. The result is that their needs remain low on the Government agenda.[368] While their need is arguably the greatest (they are unlikely to communicate via speech or sign language, yet they are largely surrounded by a workforce that is not trained to understand their communication method) they are, paradoxically, poorly served by advocacy services.[369]

People with profound and multiple learning disabilities have the greatest need for advocacy, but they have limited access to it. One survey showed that only 11% of advocacy schemes could support a person with profound and multiple learning disabilities.[370]

249. Valuing People was clear about the potentially powerful impact of advocacy:

Effective advocacy can transform the lives of people with learning disabilities by enabling them to express their wishes and aspirations and make real choices.[371]

Substantial funding was made available in its wake to support both self and citizen advocacy over a number of years.

250. Valuing People Now also endorses the importance of advocacy. It refers to three different types of advocacy: self-advocacy (where people with learning disabilities come together to speak up for themselves); citizen advocacy (where volunteers speak up on behalf of someone); and professional or representational advocacy (where people are paid to advocate on someone's behalf on a short or long term basis).[372] It is not clear, however, how far any national commitment to supporting advocacy goes, the extent to which it embraces independent advocacy (as opposed to self advocacy) or the extent of any funding for advocacy.

251. Improving the Life Chances of Disabled People made a commitment to ensuring there was one user-led organization, modelled on existing Centres for Independent Living, in each locality (defined as a council with social services responsibilities) by 2010, a commitment reiterated in Valuing People Now.[373] Such a commitment, while welcome, does not remove the need for independent advocacy for people with a learning disability.

252. The British Institute of Learning Disabilities, amongst others, told us:

Access to independent advocacy … is dependent on a post code lottery as there is no guarantee of the availability of advocacy for all those who need it. Funding for advocacy schemes tends to be very fragile and short term in nature.[374]

Moreover, organisations are often very small and spend a great deal of their limited capacity applying for short term funding.[375] Many of those submitting evidence to us argued for proper resourcing of advocacy services "to meet the growing demand in referrals and to challenge discriminatory practice".[376]

253. The Mental Capacity Act 2005 introduced a specific form of independent advocacy service. NHS bodies and local authorities ('the responsible bodies') must ensure that independent mental capacity advocates (IMCAs) are available to support people who lack capacity to make important decisions in relation to serious medical treatment or a long term change in accommodation. The responsible bodies can extend the IMCA service to decisions relating to care plans and adult protection cases, but this is not mandatory.[377]

254. However, the IMCA service is only available to those individuals who do not have any family or friends who could be consulted about those decisions (referred to as being 'unbefriended'; which means that the person has no friends or relatives who it would be appropriate to consult in determining what would be in the person's best interests). During the passage of the Mental Capacity Bill, it was argued that anyone who lacked capacity, not just those who did not have family or friends who could be consulted, should be entitled to an advocate, but this was opposed by the Government on resource grounds.[378] A number of those submitting evidence to us argued strongly that the IMCA service should not be restricted to those who are 'unbefriended', if people with learning disabilities were to be supported in asserting their human rights.[379] For example, Scope said:

We believe that widespread access to non-instructed independent advocacy is vital to protecting the rights of people who lack mental capacity in a much wider variety of situations.[380]

255. We share these concerns. Our understanding is that many people accessing IMCA services will have significant barriers to communication and will be unable to instruct the advocate themselves (this is referred to as 'non-instructed advocacy'). In addition it is likely that many people using the IMCA service will be unable to express a view about the proposed decision.[381] However, we believe that many people who have family and friends will be in a similar situation and will also require the help of a specialist independent advocate to safeguard their interests. We call upon the Government to review the availability of Independent Mental Capacity Advocate services.

256. Parents with learning disabilities, in particular, have been shown to benefit greatly from independent advocacy.[382] This mitigates the difficulties they often have in their dealings with social workers, health visitors or school staff, who may lack experience of learning disability and be unaware of how best to communicate with them or to provide them with support. But many parents do not have access to advocacy, despite the recognition in Valuing People Now that: "Research evidence illustrates a need for independent advocacy" to support them.[383] As Rotherham Advocacy Partnerships pointed out:

This leaves people in a situation where they are not given the opportunity to participate in assessments and processes in a way that is meaningful to them. It denies them the opportunity to do justice to their skills and abilities. It can also leave them confused and bewildered about what is happening around them.[384]

It may also result in their children being placed away from their family home.[385]

257. The Government's Good Practice Guidance on Working with Parents with a Learning Disability states that:

Independent advocacy should always be provided where children are the subject of a child protection plan and/or care proceedings instituted.

Any parent involved in a child protection conference and/or care proceedings should be informed about local and national sources of independent advocacy. It is particularly important that parents with learning disabilities have access to independent advocacy in these situations. Commissioning strategies should address the availability of local advocacy…as these are not always readily available.[386]

258. We recommend that parents with learning disabilities should have access to independent advocacy when subject to safeguarding procedures, particularly before any court proceedings. We call upon the Government to review current provision of advocacy services for parents with learning disabilities, to ensure that such services are available in these situations.

259. We received a good deal of evidence about the difficulties confronted by people with learning disabilities in trying to make complaints about potential breaches of their human rights.[387] We welcome the Government's proposals for reforming complaints procedures across health and social care by making them simpler, more accessible and user friendly, with independent specialist advocacy available where necessary.[388] When the new procedures come into effect, it will be important for the Government, under the Disability Equality Duty, to monitor the extent to which people with learning disabilities are making use of these new procedures and their access to independent advocacy in doing so; and to ensure that their use of complaints procedures and advocacy support is proportionate.

260. We are aware that resources are limited, but are persuaded that for many people with learning disabilities access to independent advocacy may be the only realistic means of securing their human rights, not least if family carers are no longer around to advocate on their behalf. In many cases, moreover, we are convinced that, as Learning Disability Alliance Scotland said:

Proper support at critical times in people's lives can prevent the need for more serious (and expensive) interventions at a later stage. [389]

261. We consider that adults with learning disabilities, particularly those who are most vulnerable (including parents, adults with complex and profound learning disabilities and those involved in the criminal justice system), would benefit greatly from the assistance of independent advocates in order to secure their human rights on the same basis as the rest of society.

262. Rob Greig, National Co-Director for Learning Disability told us, however, that:

Whilst funding of advocacy is important, it is also important that we help improve the quality of advocacy organisations. I do not just mean self-advocacy, I mean citizen advocacy and professional advocacy as well…there is the same onus on advocacy organisations to demonstrate impact and effectiveness as there is in any other organisations.[390]

263. Under Valuing People Now, the Valuing People national advocacy fund will change to focus on supporting advocacy to have greater impact, rather than pump priming new groups, as before. This will include self-advocacy leadership development. The fund will "pay particular attention to people at greatest risk of losing choice and control in their lives, such as those from ethnic minority communities and people with complex support needs." We welcome this commitment, but call upon the Government to review the availability of independent advocacy for people with learning disabilities whose needs fall outside the scope of the Independent Mental Capacity Advocate services provided under the Mental Capacity Act 2005, or the proposed reform of health and social care complaints procedures. We recommend that as part of their proposal to support advocacy to have an increasing impact, the Government ensures that independent advocates, including independent mental capacity advocates and others, have an understanding of human rights principles and the positive duties of public authorities and service providers towards adults with learning disabilities.

Voting rights

264. People with learning disabilities have the same right to vote as everyone else. As Members of Parliament, we were particularly concerned to hear about the significant barriers most people with learning disabilities face in exercising this right.

265. Voting is not covered by the Mental Capacity Act 2005. The test for capacity to vote (which has a relatively low threshold) therefore remains unchanged.[391] Potential voters need only show 'a capacity to understand in "broad terms" the nature and effect of voting and an ability to make a choice between candidates'.[392] However, witnesses told us that the assumption that people with learning disabilities lack the capacity to vote is a common problem. Scope commented:

In 2001 in Oxfordshire a group of Scope service users were turned away from their polling station because the Presiding Officer decided that they were not capable of voting. Such arbitrary judgments are a common occurrence for people with complex impairments. [393]

266. We received evidence that suggests people with learning disabilities may have difficulties in registering to vote. A study of the electoral register for Cambridgeshire carried out by the Centre for Participation found that only 66% of people receiving learning disability services were registered to vote, compared to 95% for the rest of the local population.[394] Scope informed us that they had anecdotal evidence of people with learning difficulties in residential settings not being told when their voter registration form arrives because staff thought that the service users were not capable of voting.[395]

267. Being included on the electoral register is only the first step in the electoral process. The Centre for Participation's study found that only 22% of those people with learning disabilities registered to vote actually did so, compared to 61% for the population as a whole. Eve Rank, Disability Rights Commissioner, told us:

The problem is that some residential homes for people with learning difficulties actually take the voting cards away because they believe their residents do not understand the voting systems.[396]

268. Ms Rank suggested that care homes should be monitored by the Commission for Social Care Inspection as part of their inspections, to find out how many residents with learning disabilities voted in the general election.

269. Ms Rank told us that people with learning disabilities could be supported to exercise their right to vote independently. She told us that the Disability Rights Commission Learning Disability Action Group had prepared a pack for prospective voters and had organised some successful training events. She suggested that the Electoral Commission could have a role in relation to this support.[397]

270. The Centre for Participation told us that too little is being done to enable people with learning disabilities to engage in the political process.[398] A similar comment was made by members of Colchester Local Action Group who felt that they had been ignored by the political parties in the recent elections and it had been hard to translate the flyers so that people with learning disabilities could understand them.[399] Scope's survey of people with learning disabilities found that 49% of the respondents thought the polling station would be inaccessible to a voter with learning disabilities and 50% of the respondents said that staff at polling stations were unhelpful.[400]

271. Article 29 of the UN Disability Rights Convention requires states to take measures to uphold the right and opportunity for disabled people to vote by, by for example:

Ensuring that voting procedures, facilities and materials are appropriate, accessible and easy to understand and use.

272. We are pleased to note that Scope is working with the Electoral Commission and the Ministry of Justice on matters such as clarifying how capacity to vote is assessed.[401] People with learning disabilities should be subject to the same test for capacity to vote as people without learning disabilities. However, assumptions that adults with learning disabilities lack capacity may prevent them from exercising their right to vote and to participate in the democratic process.

273. We recommend that the Electoral Commission and the Ministry of Justice, working with the Office of the National Director for Learning Disabilities and the Equality and Human Rights Commission, produce guidance for Presiding Officers on the test for capacity to vote and how to assess this. The Electoral Commission should work together with the Equality and Human Rights Commission to take steps to make voting more accessible for people with learning disabilities. As part of this process, we recommend that the Government consider the role of the proposed Care Quality Commission, and whether it should monitor how registered providers of care facilitate, or undermine, service users' rights to vote.

Support to participate in the local community

274. Article 8 ECHR has been interpreted by the European Court of Human Rights as including a right to participate in the life of one's local community.[402] Under the UN Disability Rights Convention State parties are obliged to "take effective measures" to facilitate the full inclusion and participation of disabled people in the community. People with learning disabilities often need support to participate in ordinary community life, but such support is often lacking.[403]

275. A key concern voiced by many of those giving evidence were the barriers they faced in trying to participate in the social life of their local community. These ranged from unwelcoming, hostile, or unhelpful attitudes from people in cafes[404] or other local facilities,[405] lack of accessible information,[406] difficulties in accessing transport to get to places,[407] venues that were physically inaccessible,[408] the increasing closure of public toilets[409] and of other local facilities like post offices and shops,[410] and fears for their personal safety (because of experiences of harassment), all of which made people more likely to stay at home.[411]

276. The most common barrier to participating in the social life of the community was the lack of support to enable people to go out, to visit friends, or pursue individual interests.

Most of us are expected to stay at home during the weekend because there is not enough staff to help us go out and do the things that [are] of interest to us, including visiting friends and family. It is hard to do something else on the spur of the moment or indeed with notice because there is not enough staff to support us to follow our own interests and lives. We see this as having our liberty deprived by services.[412]

277. Unless people had access to an advocate,[413] or good one-to-one, or self-directed, support [414] (for example, via individual budgets) which enabled them to pursue their own social activities and relationships, people generally had to go out, if they went out at all, as a group.[415] As Pembrokeshire Advocacy noted:

Predominantly the residents have either to go out as a group or not at all. This…reinforces the institutionalized medical model of care.[416]

278. Staff rotas operate as a further constraint on people having the opportunity of a normal social life. Wokingham Learning Disability Partnership Board told us:

People with a learning disability don't have the same opportunities to extend their networks and form relationships as other members of the community…lots of people with learning disabilities lives are governed by services and staff rotas - rather than being able to lead a life that they want and meet the people that they want.[417]

279. Colchester Mencap said:

Carers' shifts often change at 9pm. This means that [adults with learning disabilities] are forced to leave a leisure venue at 8.30pm to be back at their home for the changeover.[418]

280. We welcome the acknowledgement in Valuing People Now of the importance to people of friendships and relationships and its statement that although:

promoting personal relationships is not something that central government has a direct role [in],…it is something that local commissioners and service providers should pay general attention to.[419]

281. We also welcome its recommendation that local commissioners and service providers should therefore pay greater attention to:

organising service provision in a way that helps people's social contacts e.g. not designing shift patterns that curtail people's social lives.[420]

282. We are not confident, however, that this change will be brought about unless there is a more robust requirement on commissioners and service providers to change their practices, and to take a more human rights based approach to service provision. We recommend that when Valuing People Now is revised, after consultation, local commissioners and service providers should pay greater attention to how they organise services, in order to maximize, rather than limit, people's opportunities for social relationships and inclusion in the community.[421]

283. It was clear from the evidence that we received that participation in the local community is even more difficult for some groups than for others, for example, those living with older carers,[422] those in rural areas[423] and those with profound and multiple disabilities.[424] Of particular concern were the circumstances of people who were not provided with the aids they needed in order to communicate with other people. Find A Voice, a voluntary organisation helping people without speech, told us:

With our help, Keith obtained £9000 worth of funding and is now able to use his [communication] aid at meetings, on the train and to order a Chinese take-away. He can access services and is actively participating in the life of the community. [425]

284. We recommend that the final version of Valuing People Now consider the devastating impact which poor access to communication aids can have on the ability of some adults with learning disabilities to communicate with others, and thus participate in social relationships and the life of the community.

285. Some people, particularly those described as having "challenging behaviour" or complex support needs, are placed many miles away from their families and communities in out of area placements.[426] In 2006, 31% of people with learning disabilities aged 18-64 known to councils (over 11,000 people) were in residential accommodation outside their home area.[427] Yet there is general recognition that this is not usually good practice.[428] The government's own strategy as set out in Our Health, Our Care, Our Say is "to ... focus on those with complex needs and to shift care closer to home".[429] Placing people miles away from their families and local communities goes against this policy, and as the Centre for Participation in Cambridge pointed out, has a number of negative effects:

First, it restricts the opportunity for continuing family contact particularly as many are from families who are socially and financially disadvantaged.

Secondly, there may be little monitoring by the funding authorities given the distance thus the possibility of undetected abuse, exploitation, or neglect.

286. In addition, funding places in far away services takes significant investment from local services.[430] There is a very limited likelihood of people's social inclusion in the communities in which they end up, at the very time that they are likely to experience less contact with their family and friends in their community of origin.

287. As the Challenging Behaviour Foundation said:

It is obvious that if a parent lives 300 miles from their adult son/daughter they are going to be able to visit them less than if they live 3 miles away.[431]

288. We recommend that the Department of Health gathers and publishes information on the nature and numbers of out of county placements, and on the significant impact such placements have on individuals with learning disabilities, to inform its work on the revised version of Valuing People Now.

ROLE OF SERVICE PROVIDERS

289. We asked the National Co-Director for Learning Disabilities about who had responsibility for ensuring that the individual rights of adults with learning disabilities are respected. He told the Committee that the responsibility was shared three ways: firstly with individual supporters or providers (e.g. support workers); secondly with managers and service provider organisations and, where the service was commissioned from a provider, with the commissioning public authority; finally, he thought it should be the responsibility of regulators to detect breaches.[432] We have considered these duties elsewhere in this Report.

290. In previous reports we have expressed our serious concern that due to the restrictive interpretation of our national courts on the meaning of 'public authority' a range of bodies, including private care homes and voluntary organisations fall outside the remit of the HRA.[433] We consider that this leaves many vulnerable people without the protection afforded by the HRA. The concerns that we highlighted about older people in healthcare are also relevant to people with learning disabilities. A large number of adults with learning disabilities will be receiving care in the private sector. The Commission for Social Care Inspection state that as at 31 March 2006 there were 57,587 places in care homes registered with the Commission for younger adults with learning disabilities. They also estimate that 9 out of 10 care homes for adults aged 18 - 64 (many of whom are people with learning disabilities) are in the private and voluntary sector.[434]

291. In light of the significant role commissioners and service providers will play in the protection and promotion of the human rights of adults with learning disabilities, we were disappointed that the recently published Department of Health Good Practice Guidance for Commissioning Specialist Adult Learning Disability Health Services[435] fails entirely to mention "human rights" or a "human rights based approach", or to provide any practical guidance to commissioners on how to use commissioning agreements to secure respect for the rights of adults with learning disabilities.

292. The Minister told us the Government intended to ensure that the new Care Quality Commission would be under a responsibility to regulate to the "standards that would be expected if the Human Rights Act were to apply to those providers".[436] The Human Rights Minister recently told us that a statutory solution which will extend the full protection of the Human Rights Act to service users who receive support from a private sector provider will not happen until after the conclusion of a consultation on its forthcoming Green Paper on a Bill of Rights for Britain.[437] We consider that this presents a significant retreat from the Government's earlier commitment to provide a solution for private care homes as soon as possible.[438] We are concerned that this change of view will leave a significant gap in the protection of vulnerable people receiving support in the private sector, including adults with learning disabilities. We recommend that the Government legislate to ensure that all private providers of health and social care are considered public authorities for the purpose of the Human Rights Act and are subject to the duty to comply with Convention rights.[439]

338   Ev 348. Back

339   Ev 391. Back

340   Ev 335. Back

341   Valuing People Now, para 9.2.7. Back

342   Ev 69. Back

343   Ev 78. Back

344   Ev 199. Back

345   Submission of the Macclesfield Speaking Up, Speaking Out Group. Available from the Parliamentary Archives. Back

346   Ev 151. Back

347   Ibid. Back

348   Ev 223. Back

349   Ev 119. Back

350   Ev 264. Back

351   Ev 200. Back

352   Ev 263. Back

353   Valuing People Now, para 9.2.7. Back

354   Q 49. Back

355   VIA, Rights for All Project,http://viauk.org/rights.htm. Back

356   See for example. Annex 2, para 10. Back

357   Ev 69. Back

358   Ev 78. Back

359   Ev 404, 405. Back

360   Office for Disability Issues, Five principles for producing better information for disabled people, February 2007. Back

361   Q 213. Back

362   Annex 2, para 8. Back

363   Ev 147. Back

364   Ev 381-82. Back

365   Ev 200-01. Back

366   Ev 337-43 (Advocacy Partners). Back

367   Ev 125. Back

368   Ev 205. Back

369   Ibid. Back

370   Ibid  Back

371   Department of Health, Valuing People: A New Strategy for Learning Disability for the 21st Century, Cm 5086, March 2001, para.4.5. Back

372   Department of Health, Valuing People Now: From Progress to Transformation, December 2007,para 9.2.2. Back

373   Ibid,para 9.2.6. Back

374   Ev 348. Back

375   Ev 219. Back

376   Ev 122. Back

377   Ev 147. See also the Mental Capacity Act 2005, Code of Practice 10.41. Back

378   Ev 147. Back

379   Ev 201. Back

380   Ev 83. Back

381   'Making decisions: The Independent Mental Capacity (IMCA) service', www.dca.gov.uk/legal-policy/mental-capacity/mibooklets/booklet06.pdf. Back

382   We consider the rights of parents more generally, in Chapter 6. Back

383   Department of Health, Valuing People Now: From Progress to Transformation, Dec 2007,para 12.4.1.3. Back

384   Ev 357. Back

385   Ev 315. Back

386   DfES/DH, Good Practice Guidance on Working with Parents with a Learning Disability, June 2007 http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_075119. Back

387   See for example: Ev 200-01. Back

388   Department of Health, Making Experience Count: a new approach to responding to complaints http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_078565. Back

389   Ev 336. Back

390   Q 151. Back

391   Section 29 of the Mental Capacity Act 2005 excludes decisions on voting from the remit of the Act.  Back

392   Assessment of Mental Capacity, Guidance for Doctors and Lawyers, 2nd edition, British Medical Association and The Law Society, 2004, 90.  Back

393   Ev 86. Back

394   Ev 117. Back

395   Ev 86. Back

396   Q 35. Back

397   Q 35. Back

398   Ev 117. Back

399   Ev 129. Back

400   Ev 86. Back

401   Ev 86. Back

402   Botta v Italy [1998] 26 EHRR 241. Back

403   Ev 232. Back

404   Ev 328. Back

405   Ev 223. Back

406   Ibid. Back

407   Ev 328. Back

408   Ev 223. Back

409   Ev 217-18. Back

410   Ibid. Back

411   Ev 328, 218. Back

412   Ev 381. Back

413   Ev 342. Back

414   Ev 330. Back

415   Ev 328. Back

416   Ev 121. Back

417   Ev 357. Back

418   Ev 129. Back

419   Department of Health, Valuing People Now: From Progress to Transformation, Dec 2007, para 12.3.2. Back

420   Ibid. Back

421   Ibid. Back

422   Ev 317. Back

423   Ev 298. Back

424   Ev 345. Back

425   Ev 49. Back

426   Ev 232, for example. Back

427   Ev 213. Back

428   Ev 181, para 2.9. Back

429   Department of Health, Our Health, Our Care, Our Say, Cm 6737, 2006, para 31. Back

430   Ev 345. Back

431   Ev 245. Back

432   Q 138. Back

433   See for example, Eighteenth Report of Session 2006-07, The Human Rights of Older People in Healthcare, HL Paper 156-I, HC 378-I, paras 154-61. Back

434   Ev 318. Back

435   Commissioning specialist adult learning disability health services - Good practice guidance, Department of Health, 31 October 2007. Back

436   First Report of Session 2007-08 'Government Response to the Committee's Eighteenth Report of Session 2006-07: the Human Rights of Older People in Healthcare' HL Paper 5; HC 72. Back

437   Eighth Report of Session 2007-08, Legislative Scrutiny: Health and Social Care Bill, HL Paper 46, HC 303, para 1.1. Back

438   HC Debate, 15 June 2007, Cols 1045-1047. Back

439   For a full explanation of the Committee's views on the application of the Human Rights Act 1998 to the provision of health and social care, see Eighth Report of Session 2007-08, Legislative Scrutiny: Health and Social Care Bill, HL Paper 46, HC 303, para 1.6-1.18. Back