Sense 101 Pentonville Road London N1 9LG Tel: 020 7014 9367 Email: laura.bennett@sense.org.uk www.sense.org.uk Equality and Human Rights Commission Older People and Human Rights in Home Care Inquiry Sense response About Sense: Sense is the leading national charity that supports and campaigns for children and adults who are deafblind. We provide expert advice and information as well as specialist services to deafblind people, their families, carers and the professionals who work with them. We also support people who have sensory impairments with additional disabilities. Our services include on-going support for deafblind people and families. These range from day services where deafblind people have the opportunity to learn new skills and Sense-run houses in the community – where people are supported to live as independently as possible. Our communicator guides offer a vital lifeline to deafblind people living in their own homes. We also provide leading specialist advice, for example on education options and assistive technology. Sense has worked with deafblind people and their families for over 50 years. We have established services and campaigned vigorously for change where it is wanted - earning us our worldwide reputation as the leading experts in deafblindness. About deafblindness: Deafblindness is a combination of both sight and hearing difficulties. Most of what we learn about the world comes through our ears and eyes, so deafblind people face major problems in communication, accessing information and mobility. There are many causes of deafblindness. These include: premature birth, birth trauma and rubella during pregnancy, which can cause babies to be born deafblind. Some genetic conditions result in deafblindness. Any of us can become deafblind at any time through illness, accident or as we grow older. People who are born deafblind often have additional disabilities, including learning and physical disabilities. There are about 356,000 deafblind people in the UK who have a serious impairment of both vision and hearing, 222,000 of them are over 70. Some of these people are completely deaf and blind, but many have some remaining use of one or both senses. Commissioning 1. To what extent do you think that public authorities promote the human rights of older people through their commissioning/procurement of home care and contract management? We don’t believe that public authorities do promote older people’s human rights when commissioning. Firstly, the budgets that local authorities are faced with mean that they are forced to make obtaining services at the lowest cost their primary concern. This includes looking to see if they can avoid having to pay at all; and, if they do have to pay, what is the least they can pay for a service. These budget constraints also mean that they are forced to look at where social care laws say that the minimum levels of provision for care and support are, and to provide care and support at these minimum levels. Neither of these circumstances is conducive to the promotion of human rights, and deafblind older people’s human rights are therefore potentially put at risk by their budget constraints (see appendix 1). Indeed, do the UK courts even recognise potential breaches? To quote Luke Clements on the R (McDonald) v Kensington and Chelsea [2010] ruling (in which the court found that the local authority was entitled to decide that the needs of a 67 year-old woman who had had a stroke could be met by providing her with incontinence pads rather than night-time assistance) “… there is a perceptible silence when the frail, the vulnerable and the elderly are subjected to the most distressing of indignities – and if there is any squeamishness on the part of the judiciary, it is quickly disposed of by reference to … the tolling bell of tight resources.” - “Social Care Law Developments: A Sideways Look at Personalisation and Tightening Eligibility Criteria”, Clements, L (2011), Elder Law volume 1 Jordans pp.47-52. Councils have to find the lowest cost provider; this pressure drives salaries down and leads to inadequate investment in training of staff, resulting in a high staff turnover and poorer quality services. There is often little time, or incentive, for staff to perform acts of common sense or kindness. Deafblind older people’s human rights are already neglected in the current processes and structure. With the proposed cuts (in real terms) to social care budgets, and the inevitable rising of eligibility criteria, as well as the proposed restructures in the NHS, social care and public health, we are concerned that their human rights will be further at risk. Secondly, these budgetary constraints have an impact on deafblind older people in particular ways. Deafblind older people are often able to dress, feed and wash themselves; but without communication and mobility support, some deafblind people are effectively condemned to a life of solitary imprisonment in their own homes. Without support, deafblind people may be unable to: * interact with others, * access basic information, * have leisure activities, * exercise, * get out to the shops or the bank, * visit the doctor, * deal with post and bills, or * navigate their home to carry out household chores. Councils’ budgetary pressures mean that they frequently misunderstand the importance of the home care needs of deafblind people that relate to social contact or meaningful activity, and so personal care needs are prioritised for funding. The impact on deafblind people of not receiving appropriate care: In the words of an older deafblind woman who Sense worked with: “I go for 3 weeks at a time without contact with another person and I go for months without leaving my house, but because I can pull my own knickers up and down they are not interested” Isolation Deafblind people may not feel safe going out of their house alone, yet inside their house they may be unable to speak on the telephone, read, watch television or listen to the radio. Higher rates of additional health needs and conditions People with dual sensory loss are more likely to develop additional health conditions such as strokes, arthritis, heart disease, hypertension, depressive symptoms and have falls (1). There is evidence that they have higher rates of mental distress (2). Higher risk of harassment and being the victim of crime Deafblind people are at high risk of harassment or crime as they are seen as an easy target. In addition, as deafblind people cannot see or hear a person when they open their front door, they are at a heightened risk of theft and burglary. Case Study Sheila is an elderly deafblind woman who lived alone for the whole of her adult life. Until her sensory impairments degenerated significantly in her early eighties, Sheila had an active life, took part in the W.I. and helped with the reading programme at a local school. Sheila was only given 2 hours per fortnight of a combination of paid and voluntary support. She became increasingly confused due to her deafblindness and the decision was made, against Sheila’s wishes, to place her in residential care. The staff at the home do not know how to support her, for example they leave her food on a tray in front of her but don’t communicate with Sheila to tell her that her food is there and as a result Sheila may go hungry. During their weekly visits Sheila begs her family to help her to commit suicide. The Sense professional working with Sheila firmly believes that if Sheila had been given 2 hours per day of communicator guide support at an early stage to help her to readjust to her sensory impairments and thereafter 3 hours twice a week of one to one support, then Sheila could have remained in her own home. 2. To what extent do you think public authorities commissioning home care services understand their duties under the Human Rights Act in relation to promoting and protecting the human rights of older people? Local authorities will tend to consider their compliance with social care law, rather than their compliance with human rights law. The social care law must give sufficient safeguards so that it is compliant with human rights law. Protective framework 3. Do you think the legal framework of protection for the human rights of older people receiving homecare is adequate? If not how can it be improved? The issue is not simply about how adequate the legal framework is, but also how that legal framework is both implemented and enforced. As discussed above, local authorities can be forced to look for ways in which they can comply with the bare minimum of social care law. It is perfectly legal for a local authority to raise their eligibility threshold for home care to those whose care and support needs are assessed as being at a “critical” level. However, this potentially breaches deafblind older people’s human rights (please see appendix 1). Whilst the FACS eligibility criteria recognise that involvement is equally as important as health and safety, the needs of deafblind people for social interaction are too often deemed not to meet “critical” or “substantial” eligibility criteria. They are simply not seen to be as important as personal care. Deafblind older people often need more (rather than the same or less) practical, psychological, emotional and spiritual support to protect their human rights, as their impairment prevents them from accessing information, interacting with others, taking part in activities they enjoy or getting out and about. In addition, any other impairment, illness, or long-term condition (e.g. arthritis, continence) that they may have will make their daily living even more difficult due to the complex interaction between the deafblindness and the other impairment, illness, or long-term condition. Another way that local authorities do not comply with social care law is around assessments. Conducting inadequate assessments does not promote deafblind older people’s human rights. Whilst an inadequate assessment in itself does not, of course, breach someone’s human rights, it has the potential to breach them as services are highly likely to be denied as a result of the inadequate assessment (please see appendix 1). Assessments (a legal right) are not being carried out in some local authorities according to the deafblind guidance (secondary legislation issued under Section 7 of the Local Authority Social Services Act 1970), which places legal duties upon local authorities, and requires specific actions to be taken, such as identifying and keeping records on deafblind people in catchment areas. For example, assessments should be carried out by a worker who understands deafblindness and how blindness and deafness interact. Social workers (who often lack even the basic communication skills needed to communicate with people who have a sensory loss) are sometimes carrying these assessments out. The assessor then wrongly concludes that the deafblind person is in a similar situation to other frail and vulnerable older people, and many deafblind older people are often incorrectly assessed as having moderate needs, when their needs are substantial or critical. As many local authorities will now only be funding substantial or critical needs, this lack of understanding at “gatekeeper” level means that deafblind people are frequently told that they are not eligible for care when they would be entitled to it. Where the legal framework is used, it is difficult to enforce. “Baroness Hale wondered ‘whether we can recognise a real human rights abuse when we see one’” - “Social Care Law Developments: A Sideways Look at Personalisation and Tightening Eligibility Criteria”, Clements, L (2011), Elder Law volume 1 Jordans pp.47-52. Human rights law is rarely used in relation to people receiving home care. In addition, with the proposed changes to reduce the funding available for civic legal aid, how likely is it that deafblind older people will be able to find a solicitor funded for community care or human rights legal work? This is, of course, assuming that deafblind older people are aware of their rights, are able to get the communication support needed to communicate with a solicitor, and have the stamina to fight for their rights in a lengthy legal case. Deafblind older people are unlikely to take their local council to court, so unless there is pressure from above to comply with human rights from above, then this pressure will not come from councils themselves or deafblind people. Good practice or barriers 5. Can you describe examples of good practice in the promotion and protection of human rights of older people in home care? Why do you think this represents good practice? Communicator guides. A communicator guide is a trained person with specialist skills who provides communication support, and can guide or interpret for a person. This enables a deafblind person to receive information, get out and about, and helps them to remain independent. Case study: S is 82 and lives alone. She had hearing and sight for most of her life, but now has so little of each that she cannot use speech to communicate. Over the last 2 years, a skilled support worker has introduced her to deafblind manual, a tactile form of communication involving spelling letters onto the hand. She now uses this for all receptive communication, although she is still very slow. She now has support from a communicator guide for a few hours each week. Without this support she is unable to leave the house or to read her correspondence, bills, etc. She is able to get around her own home, cook basic food and needs no support with personal care, but she cannot leave the house or communicate with others without support. When alone she cannot read, watch TV or listen to radio or books on tape. Many people in S’s position will receive perhaps only 2 hours of support per week, though some will receive considerably more. Without the support of a communicator guide some deafblind people will be completely isolated and trapped in their own home. Deafblind people may not feel safe going out of their house alone, yet inside their house they may be unable to speak on the telephone, read, watch television or listen to the radio. A deafblind person’s need is so basic that without communicator guide support their human rights may potentially be breached (see appendix 1). Support and improvements 8. What improvements, if any, could be made in promoting and protecting the human rights of older people receiving home care? Which bodies are best placed to deliver these improvements? Social care law needs to be strong enough to protect and promote the human rights of older people receiving home care. Then so long as local authorities correctly comply with social care law, they will have complied with human rights law. The law needs to be strengthened, and it needs to be enforced. This will mean monitoring or scrutiny that doesn’t rely on individuals taking their local authorities to court. There is no incentive for local authorities to enforce compliance themselves The CQC should make explicit assessments of human rights an outcome of local authorities’ work. The Law Commission’s review of adult social care law needs to ensure that human rights concerns are not left out of the process. In addition, any recommendations to government about the future of a single adult social care law must include how human rights will be protected by this law. Any Bill, or Act must, of course, protect people’s human rights. In addition, the impact of ageism needs to be recognised, as it is this that leads people to fail to recognise the potential human rights breaches, as they fail to realise what’s reasonable for older people. Appendix 1 Human Rights Considerations ECHR The failure to provide adequate care and support to deafblind people may result in a violation of Article 3, 5 and 8. Article 3 In the case of Larioshina v Russia (3) the ECtHR recognised that in principle, a state may be found to be in violation of Article 3 where a wholly insufficient amount of pension and other social benefits is received. Despite the high threshold of Article 3, Sense would argue that it is entirely foreseeable that in the event that a deafblind person failed to receive appropriate care and support that their living conditions would fall into the category of inhuman or degrading treatment. The ECtHR has set out some clear guidelines for the treatment of prisoners when interpreting the Convention (4). Sense argues that the dynamic nature of the Convention (5) allows for the principles which have been established in respect of prisoners to be extended to deafblind people without adequate support who are in effect prisoners in their own home. The complete sensory isolation coupled with the complete social isolation suffered by deafblind people with extreme impairments who do not receive adequate care and support would represent a violation of Article 3 (6). The starting point for assessment of the threshold for inhuman treatment brought about by solitary confinement can be found in Yurttas v Turkey where the Court noted that “Complete sensory isolation, coupled with total social isolation, can destroy the personality and constitutes a form of inhuman treatment which cannot be justified by the requirements of security or any other reason.” (7) Deafblind people with a high degree of hearing and sight loss who do not receive appropriate care are clearly in a position of complete sensory isolation coupled with total social isolation. It is common for deafblind people to go for weeks without contact with another person. A deafblind Sense service user commented: “The council provides me with enough support to get out of the house once a month to get to the bank and to the shops to get food. The rest of the time I sit at home. I can’t watch the TV, listen to the radio, talk on the telephone or read a book, so I polish my silver. It is the only thing I can do to stop myself from going mad.” Staying at home alone for long periods of time is frequently considered by local authorities to be an acceptable activity for older people. However, some deafblind older people are unable to read, watch the television, listen to the radio or speak on the telephone. In addition, even if they are visited by friends or family they may be unable to communicate with them without the intervention of a communicator guide or an interpreter. Deafblind people may be unable to leave their homes due to a risk to life. This is important as in Ramirez Sanchez v France (8) the prisoner had continued to enjoy access to books, newspapers, television and considerable contact with his lawyers, doctor and fiancée, leading the court to conclude that he could not be regarded as having been kept in complete sensory and social isolation as claimed. This judgement would appear to indicate that in the absence of such access the person is subject to inhumane treatment, leading Sense to conclude that many deafblind people do indeed live in conditions which would meet the threshold of an Article 3 violation. Article 8 Inherent in the interpretation of Article 8 is the notion that the state has positive obligations to protect family life (9) and to prevent the separation of an individual from his or her family. Article 8 guarantees the rights to privacy, personal autonomy and physical integrity. These rights have been interpreted to afford the individual rights in relation to the adequacy and competence of healthcare, and in relation to their autonomy in choosing whether and how they are cared for. The ECtHR has stated that “Article 8 concerns rights of central importance to the individual’s identity, self-determination, physical and moral integrity, maintenance of relationships with others and a settled and secure place in the community.” (10). Separation from family The notion of family includes the relationship between parents and children (11) and other relatives including grandparents (12). The state may have a positive obligation to facilitate contact between other categories of persons depending on the intensity of the ties and the stability of the contact (13). In the FERLA v Poland case (14) disciplinary proceedings resulted in a restriction on family visits for almost a year and the State was found to be in violation of Article 8. As older deafblind people’s sight and hearing deteriorates their ability to communicate with their family members without the intervention of a third party communicator guide or interpreter commonly decreases. Further the person may be unable to physically leave their home to visit relatives without the support of a communicator guide to prevent risk of serious injury. If the state fails to provide adequate support then the deafblind person is effectively separated from their family by their sensory impairments. Sense argues that there is a positive obligation on the State to facilitate the relationship between deafblind people and their family members and a failure to provide such support may amount to a violation of Article 8. Autonomy, the development of personality, and participation In a case concerning two sisters with profound physical and learning disabilities, the High court commented that Article 8 encompasses “[…] the positive obligation of the State to take appropriate measures designed to ensure to the greatest extent feasible that a disabled person is not "so circumscribed and so isolated so to be deprived of the possibility of developing his personality." (15) The European Court of Human Rights has recognised that freedom to exercise control over our own lives is a key aspect of Article 8 and considers that the notion of personal autonomy is an important principle underlying the interpretation of its guarantees (16). JCHR 7th Report (17) PROMOTING PARTICIPATION 45. Article 8 of the ECHR also incorporates issues relevant to participation, for example it encompasses the right to participate in the life of the community. Participation covers the involvement of individuals that affect them personally as well as decisions relating to policy development. The European Court of Human Rights has recognised that freedom to exercise control over our own lives is a key aspect of Article 8: Although no previous case has established as such any right to self-determination as being contained in Article 8 of the Convention, the Court considers that the notion of personal autonomy is an important principle underlying the interpretation of its guarantees (18) In Botta v Italy (19) the (disabled) applicant complained that the State’s failure to provide an access ramp to a beach violated his right to private and family life. Whilst the court held that there was no violation in this instance because the persons residence was located a long way from the beach, the Court confirmed that States have positive obligations where there is a direct and immediate link between the measures sought and the effective respect of the right. Where a deafblind person is denied access to a communicator guide they are effectively being denied the opportunity to exercise control over their own lives and the opportunity to participate in society. As we have seen a deafblind person who is denied access to a communicator guide will be unable to: * interact with others, * access food, * access basic information, * have leisure activities, * work or volunteer, * exercise, * get out to the shops or the bank, * visit the doctor, * deal with post and bills, or * navigate their home to carry out household chores, Sense argues then that state failure to provide access to appropriate support may violate the Article 8 rights of deafblind people to exercise autonomy over their own lives, participate in society and develop their personalities. Article 5 Article 5 can be said to place positive obligations upon the state to prevent the risk of unlawful detention (20). The Court has found that public officials cannot stand by and allow a deprivation of liberty to be perpetrated where this is not compatible with the requirements of Article 5 (21). Sense contends that this argument can be extended to create a positive obligation upon the state to act to protect deafblind people from being deprived of their liberty. Where deafblind people with the highest needs are not given adequate care it can be said that they are effectively deprived of their liberty as they will be unable to leave the confines of their home without risk to life. A deafblind person who is not receiving adequate and appropriate social care which allows her to leave her home will be effectively imprisoned in their home in violation of article 5(1). Further, Article 5(4) requires that an imprisoned person should have the right to take proceedings by which the lawfulness of the detention can be decided speedily by the court. The lengthy complaints procedure for a challenge of a social care assessment does not satisfy the requirements of Article 5(4) (22). Article 2 It is foreseeable that in cases where there has been an extreme dereliction of care, a provider could risk an article 2 violation, by dint of having deprived a deafblind person of food. It is common for deafblind people to have home care providers who place food in front of them, but do not let them know it is there, or leave it in an inaccessible place. We know of a deafblind older person, Samuel (not his real name), who was paying for his own care. A Sense worker happened to bump into a care worker coming out of Samuel’s house as the Sense worker was about to go in. The care worker expressed bemusement as to why Samuel hadn’t eaten his breakfast for the last three days. It transpired that the care worker had left the breakfast out for Samuel on the kitchen countertop everyday, but had not let Samuel know that she was either in his house or that the breakfast was in the kitchen. Even if Samuel had wondered if anyone had come into his house and gone in to his kitchen to attempt to fetch his breakfast, he wouldn’t have known where it was as it was being placed in a different place each time. The care worker had not reported to the agency she worked for that Samuel had not eaten his breakfast. Nor had any of the other care workers who went in for the lunchtime and evening visits. Whilst this case would not constitute a breach of human rights, it would have the potential to if this extended to more meals and over a longer period of time. March 2011 1 Crews J.E., Campbell V.A., 2004, Vision impairment and hearing loss among community-dwelling older Americans: implications for health and functioning. American Journal of Public Health; 94 (5); 823-9 2 VICTAR, 2007, Secondary data analysis with a focus on the needs of older people with acquired hearing and sight loss: An analysis of the ‘Network 1000’ and ‘Cambridge’ datasets, 35 3 Larioshina v. Russia, Admissibility Decision of 23 April 2002 4 The Court itself has not laid down a code on the material conditions of detention respectful of human dignity. But those drawn up by the Council of Europe’s European Committee for the Prevention of Torture and Inhuman or Degrading Treatment or Punishment clearly constitute the frame of reference. The court has however decreed on a range of conditions which are wholly unacceptable: see for example Price v UK (10 July 2001 Application No. 5493/72) where the Court regarded as degrading treatment the detention of a disabled, “four limb deficient” person with serious kidney problems in unsuitable cells where she could not get into bed, use the toilets or carry out ordinary acts of hygiene without the help of other persons and where, in addition, officers at the police station where Mrs Price was held initially and the prison authorities ought to have taken action: the court by ascertaining that installations suited to her severe handicap existed,126 and the others by transferring her to a suitable place or releasing her. 4 The ECHR is frequently described as a living instrument, see for example the Elisabeth Palm’s (Judge at the European Court of Human Rights) Evening lecture at the AIRE Centre’s meeting on Contact & Article 8 ECHR: The developing Jurisprudence of the European Court of Human Rights and the Implications For Domestic Family Law: Comments on the Right to respect for Private and Family life in the case law of the European Court of Human Rights with special emphasis on Contact. “The Court constantly repeats that the Convention is a “living instrument” which must be interpreted in the light of present day’s conditions (Tyrer v UK, 25 April 1978, A 26). It also underlines that the protected rights must be practical and effective (Airey v Ireland, 9 March 1977, A32). It consequently applies a dynamic or evolutive and effective interpretation of the Convention articles which allows it to include step by step new areas under the protection of the Convention.” 4 Yurttas v Turkey Nos 25143/94 and 27098/95 paragraph 47, 27 May 2004 4 Nos 25143/94 and 27098/95 paragraph 47, 27 May 2004 4 No 59450/00 paragraph 48-49 27th January 2005 it was cold, plus the fact that she had difficulty in drinking. In that case the Court stated very clearly that the court which convicted her, the officers at the police station where Mrs Price was held initially and the prison authorities ought to have taken action: the court by ascertaining that installations suited to her severe handicap existed,126 and the others by transferring her to a suitable place or releasing her. 5 The ECHR is frequently described as a living instrument, see for example the Elisabeth Palm’s (Judge at the European Court of Human Rights) Evening lecture at the AIRE Centre’s meeting on Contact & Article 8 ECHR: The developing Jurisprudence of the European Court of Human Rights and the Implications For Domestic Family Law: Comments on the Right to respect for Private and Family life in the case law of the European Court of Human Rights with special emphasis on Contact. “The Court constantly repeats that the Convention is a “living instrument” which must be interpreted in the light of present day’s conditions (Tyrer v UK, 25 April 1978, A 26). It also underlines that the protected rights must be practical and effective (Airey v Ireland, 9 March 1977, A32). It consequently applies a dynamic or evolutive and effective interpretation of the Convention articles which allows it to include step by step new areas under the protection of the Convention.” 6 Yurttas v Turkey Nos 25143/94 and 27098/95 paragraph 47, 27 May 2004 7 Nos 25143/94 and 27098/95 paragraph 47, 27 May 2004 8 No 59450/00 paragraph 48-49 27th January 2005 9 X and Y v Netherlands, 26 March 1985, A91 10 Connors v. United Kingdom European Court of Human Rights, Application No. 66746/01 (27 May 2004). 11 Hokkanen v Finland 23 September 1994, A299 A and children born outside of marriage Marckx v Belgium, 13 June 1979, A 31 12 Marckx v Belgium ibid 13 Kroon and others v the Netherlands 27 October 1994, A297 c. 14 No 55470/00 Judgement 20.5.2008 [Section IV] No.108 15 A and B (X and Y) v East Sussex CC [2002] EWHC 2771 (Admin), paragraph 99. See also Price v the United Kingdom (2001) 34 EHHR 1285 and Botta v Italy (1998) 26 EHHR 241. 16 Pretty v the United Kingdom [2002] 35 EHRR 1 17 http://www.publications.parliament.uk/pa/jt200708/jtselect/jtrights/40/4014.htm 18 Pretty v the United Kingdom [2002] 35 EHRR 1 19 European Court of Human Rights (1998) 26 EHHR 241 20 Kurt v Turkey Judgement of 25 May 1998 21 Riera Blume and Others v. Spain, 14 October 1999. 22HL v UK [2004] 40 EHRR 761 and Sabeur Ben Ali v. Malta Application No. 35892/97 ?? ?? ?? ?? Equality and Human Rights Commission Older People and Human Rights in Home Care Inquiry Sense response Page 1 of 10