02092 Carers NI · Whose rights are they anyway?: Carers and the Human Rights Act Executive Summary “I became ill overnight. I was haemorrhaging internally and needed immediate

WWhhoossee rriigghhttss aarree tthheeyy aannyywwaayy??::Carers and the Human Rights Act

CARERS UK

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CARERS UK

Written and researched by

Jenny Watson, Global Partners and Associates

Photography by

Sam Tanner

Supported by

The Calouste Gulbenkian Foundation

■ Contents

Page

Executive Summary 1

Introduction and Context 4

The Human Rights Act 1998 10

Findings 14

Recommendations for Action 24

Acknowledgments 26

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WWhhoossee rriigghhttss aarree tthheeyy aannyywwaayy??:: Carers and the Human Rights Act

■ Executive Summary

“I became ill overnight. I washaemorrhaging internally andneeded immediate hospitaladmission. I called Social Servicesemergency line. In short it took 10hours to get adequate helporganised before I could getmyself to hospital. The consultantsaid I was lucky not to have died.”

This experience is one which will, sadly, berecognised by many carers - yet it iscompletely preventable. Too often carersremain invisible, their rights ignored. Yet wecan all claim a right to life, along with otherfundamental human rights, and carers are noexception. Of course the rights of carers willalways need to be balanced against the rightsof the person who receives care or supportfrom them. That is precisely why the HumanRights Act has such potential to transformtheir lives. Its framework is one of balancingdifferent or completing rights - against eachother and against the interests of the widercommunity.

Yet so far it appears that the Human RightsAct has not yet been of value to carers.

It is not being used by social careprofessionals as they plan and designservices or put care packages in place.Individual carers may face human rightsviolations which could be open to challengein the courts and the social care system toooften seems to be incapable of balancing therights of carers with the rights of those theysupport, relying instead on “one size fits all”policies and services.

Right to life

Carers have delayed emergency medicaltreatment, which could cost them their life, orput their lives at risk during the course oftreatment. One carer was told, while on adrip in hospital, ‘you’ve had your six weeksrespite care break this year’. It is hard tosee how such a blanket policy can beconsidered compliant with the Human RightsAct – and easy to see the risk to the lives ofcarers that this lack of support presents.

In some cases the person at risk is not thecarer – it is the person who they support.One carer stated: “The social worker justwrote down that there would be no one toreplace me as the primary carer.” This doesnot demonstrate that the right to life of eitherthe carer or the person they support havebeen considered.

Right to be free from inhuman or degradingtreatment

It is obvious that many carers face risks tohealth which are not implicit in the lives ofothers who do not care. Carers who suffermental health problems or physical illness asa result of caring could argue that the stateshould have taken steps to prevent this,where contact with health or social care staffmeans it is aware of the problem.

Failing to take account of risks to a carers’health, failing to put in place services whichcould prevent a decline in health, or failing toprovide services which allow a carer toaccess medical treatment might in somecircumstances constitute a violation of thishuman right.

Right to respect for private and family life

Caring can lead to carers (particularlywomen) being unable to continue work, todevelop family and other relationships, topursue outside interests or even to rest.Older couples who would prefer to staytogether are separated, because adequatesupport cannot be provided to back up thecarer in the community. All of this interfereswith a carer’s private and family life.

The report quotes a woman who was “told bysocial services to give up my job to care aftermy husband had a stroke”. Many carers stillface assumptions from staff that they willtake on caring responsibilities, and this couldconstitute a breach of this human right.

Carers can find that the rights of paid carestaff take precedence, regardless of acarer’s concern about the risks to them andthe person in need of care.

Carers could more actively challenge suchdecisions if they knew their rights, andsometimes a positive duty exists to provideinformation to people to enable them tomake decisions about their rights. Yet manycarers receive no information.

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Right to an education

A substantial minority of young carers have problems with missing school, particularly wherethey support someone who has drug or alcohol problems. Since only 18% of young carers hadbeen assessed, it is hard to see how adequate support is being provided to enable them toattend school in the same way as a child without caring responsibilities. This is likely tointerfere with a child’s right to an education and is potentially a human rights violation.

Four key themes emerged from the research reviewed for this report:

• Carers’ rights are not adequately considered. The Human Rights Act offers a frameworkfor ensuring that the rights of an older or disabled person can be balanced against therights of a carer. Balancing rights would also allow consideration of the interests of thewider community (presumably financial), alongside the rights of the carer.

The framework does not mean that social services will have to put in place everything acarer asks for. It does mean they can demonstrate that they have considered the carer’srights before making a decision, rather than relying on a blanket policy, which is open tolegal challenge.

It appears that this balancing rarely happens. Social services teams regularly tell carersthat they cannot have a service the carer wants before their needs have even beenassessed. Statistics on carers’ health suggest that carers’ human rights are notadequately considered in making decisions, since the outcomes put carers under suchsevere physical and/or mental strain.

• Carers’ rights are not real. One of the safeguards required for the protection of humanrights is that they are practical and effective, not abstract proposals. Yet all too oftencarers’ rights are simply not real. For example a carer’s assessment should ensure that their needs are considered, andpresumably met. Yet many carers have no idea that they are entitled to a carer’sassessment. Without access to an assessment and without the ability for social servicesteams to follow through, carers’ will continue to find that their rights are not real.

• Resources are inadequate to allow rights to be protected. The literature presents apicture of carers who find that the services they need are not available to them becauseof inadequate resources –either cost or staff time.

It may be that the lack of resources available in order to guarantee rights could itself beconsidered a breach of the Human Rights Act. However the courts have been reluctant tointervene in the allocation of resources.

• Good practice need not be expensive. There was some evidence of imaginative goodpractice that did help to safeguard carers’ human rights. For example, in one area a 24-hour carers’ helpline enabled support arrangements to be put in place in the case of anemergency, protecting article 2 rights (the right to life). But such good practice was thinon the ground.

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The government’s own research suggests that carers can be a socially vulnerable and excludedgroup with very different life chances to the rest of the population, even after the caring roleends.

There is therefore a positive obligation on the UK under the Human Rights Act to address thecauses of this social exclusion. Proper guidance from government in relation to the HumanRights Act could help to prevent legal challenge and ensure that services are delivered in linewith the Act’s principles.

■ Summary of Recommendations for Action

Legislation to prevent discrimination against people with caring responsibilities

Guidance for service providers within health and social services to ensure that serviceproviders are clear about their responsibilities.

Advice and information on carers’ rights. People need to be able to make decisionsabout their rights.

Ensuring that health and social services are complying with human rights standards,particularly the positive obligations which they may have.

An investigation into whether the Human Rights Act is being correctly applied

Raising awareness about human rights of disabled people and older people and of thosewho are providing support or care.

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In growing recognition of the level ofunpaid caring, for the first time everthe 2001 Census included aquestion about whether peopleprovided unpaid care – for a familymember or friend – and if so, howmuch time this took. The results(which are likely to be under-reported) show that 5.2 millionpeople in England and Wales aloneprovide unpaid care. More than onemillion of those people provide morethan 50 hours care a week. 1InScotland the census reports481,579 carers with 116,426providing 50 hours or more of care aweek. In Northern Ireland there are185,066 carers bringing the UK totalto nearly six million carers.

Carers UK’s own research showsthat 2 million people in the UK willbecome carers each year2. Many ofus will have little choice as towhether or not we choose to take onthe role of carer; some of us will findthat it is one of the most rewardingthings we have done in our lives,whilst others will find it a difficultand frustrating experience, changingour life in a way we had neverexpected. In some cases thesupport carers provide enables olderpeople or disabled people to livetheir life independently, or helps achild to grow and develop; in othercases it allows a terminally illrelative or friend to die at home, or aparent or older relative to besupported emotionally andpractically after the death of ahusband, wife or partner. Often,improved support services providedby statutory or voluntary services to

the disabled or older person, ontheir own terms, can suit bothparties3. In other cases views maydiffer – and both parties requirerespect for their rights and interests.

Most carers are women: 58% in theUK as a whole, and as high as 63%in Scotland. One in four women agedbetween 50 and 59 provides unpaidcare, compared to 17.9% of menfrom this age group.4 80% of carersare of working age , and 6 out of 10carers providing substantial amountsof care have given up paid work todo so.5 So, there is no such thingas an average carer: every situationis unique.

Added together, the unpaid workthese carers provide saves the UKeconomy £57.4 billion a year6. Thisis the equivalent of a secondNational Health Service. Over onemillion people care for more thanone person and over three millionjuggle care with paid employment.Those who provide high levels ofcare are twice as likely to bepermanently sick or disabledthemselves.7 If they provide morethan 35 hours care, some of thesecarers will be able to claim Carer’sAllowance. It is worth just £1.30 anhour.8

Carers, like everyone else in the UK,are entitled to rely on the protectionof the Human Rights Act 1998,which should ensure that publicbodies take account of their humanrights when they provide services,and seek to uphold these. Publicservices play a critical role in

■ Introduction

The government’s National Strategy for Carers estimates that there are six million carers in theUK. Yet the term “carers” is still not generally understood and is not uncontested, particularlyby the disability rights movement. This report will use Carers UK’s definition:

“Carers look after family, partners or friends in need of help because theyare ill, frail or have a disability. The care they provide is unpaid.”

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The context

This section of the report provides some contextfor the findings. First, it briefly considerscommunity care law as it relates to carers.Secondly it outlines the structure of the HumanRights Act and explores some of the ways inwhich it might be relevant to carers.

Community care law

Carers can rely on a number of different pieces oflegislation to claim a patchwork of social caresupport, mostly accessed through the provision ofcarer assessments as a first step. The legalposition is outlined briefly below and the journeyfrom soft rights to hard rights is beautifullyillustrated by the changes in emphasis of thelegislation over time. Carers in England and Waleswill also benefit from a new piece of legislationwhich came into force in April 2005, the Carers(Equal Opportunities) Act, although it is too earlyto say what impact this will have on their lives.11

Disabled Persons (Services, Consultation andRepresentation) Act 1986

This legislation requires social services to “haveregard” to the carer’s ability to provide care whenthey assess the services a disabled personneeds. This duty is in place whether or not thecarer asks for help. ‘Carer’ for the purposes ofthis legislation includes volunteers who providecare – for example from the WRVS or other localschemes. It does not cover carers who care forpeople receiving services under the Mental HealthAct 1983 or the Health Services and Public HealthAct 1968 – usually those who are frail and/orolder.

Carers (Recognition and Services Act) 1995

This law, which began life as a private member’sBill sponsored by Malcolm Wicks MP and coversEngland and Wales, requires a social servicesauthority, if they are asked to do so, to carry outa separate assessment of the carer at the sametime as it assesses the person for whom care isprovided. This is a step on from simply “havingregard” though it is notable that, as has beenremarked “the 1995 Act is misnamed in thatthere is only one service it provides for carers,namely an assessment”: it does not strictlyspeaking provide services!12 It is important to

guaranteeing carers’ human rights. Theycan ensure that carers have the supportthey need to maintain a normal life, totake breaks occasionally, and tomaintain their own health. This reportshows that reality falls a long way shortof this ideal.

The Human Rights Act (HRA) offers aunique framework which could be usedby policy makers and service providers.This framework, of balancing different orcompeting rights against each other, andagainst the interests of the widercommunity, is particularly relevant tocarers. This is because the rights of thecarer will always need to be balancedagainst the right of the person whoreceives care or support.

Disabled people, in particular, havefought a long battle to have their right toindependence recognised and respected,and to ensure that they can claim theirhuman rights, including rights to makedecisions about their own lives9. CarersUK wholeheartedly supports this change.

Carers UK seeks to ensure that carers,too, are treated with the dignity andrespect that all human beings deserve.The HRA, with its framework of balancingrights has a significant contribution tomake to this debate. As Luke Clementshas suggested “we may now associatedisabled people with ideas about hardrights – such as the right to work andfreedom from discrimination – whereas‘carers’ are still seen as inhabiting thesoft social rights domain”.10 It is timefor this to change. The Human Rights Actcan play a role here. But what impacthas it had so far?

In order to try and answer this question,desk research undertaken for thepurposes of this briefing reviewed arange of existing research and carers’experiences, mapping them against theHuman Rights Act. The research alsolooked at carers’ experience of services– what impact has the Human Rights Acthad on the way in which they aredesigned and delivered?

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note that the carer must request the carer’sassessment, must be providing a substantialamount of care, and the person for whomthey care must be being assessed for carealso. The phrase “substantial care” is notdefined, but the English guidance to theCarers and Disabled Children Act 2000 setsout four criteria which might apply:

• Autonomy – ie. the extent to which thecarer has choice over the tasks the willperform and over the time that they give

• Health and safety – ie the risks to thecarer’s own health of maintaining thecaring role at its current level

• Managing daily routine – the extent towhich carers are able to look after theirown domestic needs and other dailyroutines

• Involvement – the extent to which carershave freedom to maintain relationships,employment, interests and othercommitments.

These four criteria are close to many of thefundamental human rights protected by theHRA 1998.

If a carer feels they need community careservices in their own right, despite the factthat they are not providing regular orsubstantial care, they can ask for a separateassessment.

Carers and Disabled Children Act 2000

This Act, sponsored by Tom Pendry MP andcovering England and Wales, enablesservices to be provided directly to the carer.It follows the publication of a strategy paperin 1999 from the Department of Health,which acknowledged that existing legislationprevented carers from receiving help in theirown right.13

As a result of the CDCA, carers over the ageof 16 who provide, or intend to provide, asubstantial amount of care on a regular basisfor another person aged 18 or over, areentitled to an assessment. They receive thisassessment even where the person for whomthey provide care or support has refused thedelivery of community care services.

To ensure best practice, social workersshould not only advise potential carers oftheir rights, but should also give them aleaflet setting out the benefits of receiving acarer’s assessment. In practice this oftendoes not happen14. The assessments aresupposed to “focus on outcomes the carerwould want to see help them in their caringrole and maintain their health and well-being.”15

Following an assessment a local authoritycan under the CDCA provide a range ofservices to carers. For example they mightprovide equipment or training, or put in placea service which might give the carerassistance around the house. The practiceguidance makes it quite clear to localauthorities that they are expected to providea full range of services; they should notrefuse to provide help with shopping orcleaning, as is so often requested by carers.The definition of services can be extremelybroad – it might include the provision of amobile phone, help with travel or theprovision of driving lessons. Respite care,however, is not a “carer’s service” as amatter of law under the CDCA, though localauthorities are able to provide voucherswhich can be used by carers to obtain respiteor short term break services. Services caneither be provided by the local authority, orthey can be delivered by way of directpayments: this effectively offers the carercash payments as an alternative to arrangingsocial care services to meet their needs.Many people do not in practice find DirectPayments easy to operate, since theybecome legally responsible as an employer,and need to make arrangements foremployer’s liability insurance, tax and NIcontributions. The government’s currentGreen Paper Independence, Well Being andChoice suggests that Direct Payments maybe reformed and a recent report from thePrime Minister’s Strategy Unit proposedindividualised budgets that would notnecessarily require the individual to hold thepurse strings – but that do pool resourcesand provide greater control to the serviceuser16.

The CDCA tries to address the issue ofproviding support to a carer where theperson for whom they care, or provide

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support, has refused to receive communitycare services themselves. Clements citesthe policy guidance which gives an example:“a cared for person who has refused anassessment may agree to the delivery of anon-intimate sitting service provided as acarer’s service to give their usual carer ashort break.”17

The guidance to the CDCA also provides alimited framework for young people aged 16or over who take on caring roles. Theguidance makes it clear that services andsupport should be provided to disabledparents to enable them to carry out theirparental responsibilities. But in some cases,children do take on caring roles. In suchcases, their needs should be assessedthrough direct work with them, and shouldbring out any differences in view betweenchildren and a parent as to the amount ofcaring that is provided. The ultimate aim ofthe assessment should be “to promote thehealth and development of young carerswhile not undermining the parent.”18 A youngcarer may, of course, be a “child in need” forthe purposes of the Children Act.

Carers and Direct Payments Act (NorthernIreland) 2002

Based on the CDCA, the Northern IrelandAssembly included most aspects of theBritish legislation, but also introduced newprovisions, notably a duty on health andsocial services boards and trusts to informcarers.

As with the CDCA, this Act gives carers inNorthern Ireland the right in law to anassessment, whether or not the person theycare for is having an assessment.

In responding to needs identified by thoseassessments, the Act gives Health & SocialServices Trusts the power for the first time togive services directly to carers, as well asproviding services to the person being caredfor. Provision for a voucher scheme iscontained within the Act, however it has notyet been commenced.

The CDPA extends Direct Paymentslegislation in order to make Direct Paymentsaccessible to more people, including carers

aged 16 and over. Health and SocialServices Trusts, who previously haddiscretion in whether or not to offer DirectPayments, now must also make directpayments available to anyone that asks,providing they meet the conditions.

The new duty to inform has two elements.Firstly it places a broad requirement onTrusts to inform carers of their right to acarers’ assessment and to take steps toensure that carers in each Trust area haveaccess to such information. In addition, itrequires that where a Trust is aware thatsomeone is providing care, it must notify thecarer of his/her right to request anassessment.

It is possible to use the CDPA to assess andsupport 16 and 17 year old carers, where forparticular reasons it is in their best intereststo do so. However, the clear policy intentionis that ‘young carers’ should be supported aschildren, not maintained inappropriately in acaring role. To make this explicit, the Actactually amends the Children Order torecognise children adversely affected bycaring responsibilities as 'children in need'under the Children Order.

Community Care & Health (Scotland) Act2002

From 1st September 2002, the Act gavecarers (including parent carers) the right torequest an independent assessment of theirneeds, rather than the previous situationwhere their assessments were linked to theassessment of the people for whom theyprovided support or care. Carers of any agewill be able to request an assessment,including young carers under the age ofsixteen. When a local authority is assessinga cared-for person, they now have to takeinto account the carer's views. Localauthorities have a duty to inform eligiblecarers (those who provide or intend toprovide “substantial and regular care”) oftheir right to an assessment.

The guidance provided to support the Actunderlines the fundamental principle thatcarers should be recognised and treated askey partners in providing care and itsintention is that the recognition of carers as

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partners rather than service users shouldunderpin all support given to both carers andthe people they care for or support. A secondprinciple underlying the new legislation is theneed for adequate resources to enablecarers to continue in their role Suchresources may take the form of paid servicesfor a disabled or older person, whichcomplement any unpaid support, as well assupport or advice provided directly to thecarer.19

The Act also sought to simplify joint workingand placed a duty on local authorities to offerdirect payments to eligible disabled peopleand other community care groups. Parentcarers for example can consent to andarrange a direct payment to purchaseservices on behalf of their disabled child.Carers with specific appropriate powers underthe Adults with Incapacity (Scotland) Act2000 e.g. power of attorney or guardianshipcan consent to direct payments on behalf ofthe person they care for.

Part of the new Act also imposed a duty onHealth Boards to produce Carer InformationStrategies; these will have to outline howHealth Boards will inform carers in theirareas of these new rights. Informationprovision will also cover areas to supportcarers in caring – for example, information ontreatment or medication.

Mental Health (Care & Treatment) Scotland2003

The new Act comes into full effect fromOctober 2005 (though some areas havealready been introduced). Its relevance tocarers is that one of the ten guidingprinciples is a commitment by the ScottishExecutive and NHS to acknowledge the roleof carers and the value of their experiencewhile ensuring that they receive appropriateadvice and information and have their viewsand needs taken into account. Both serviceusers and carers will have a new right torequest an assessment of the service users’needs.

Service users will be able to choose a namedperson to support them and protect theirinterests in any proceedings under the newAct. If no-one is chosen by the service user

then their primary carer will be the namedperson. If there is no primary care, theservice user’s nearest relative willautomatically become their named person.

Carers (Equal Opportunities) Act 2004

New legislation affecting carers came intoforce in England and Wales in April 2005.The Carers (Equal Opportunities) Act 2004was passed as a result of a PrivateMember’s Bill supported by Dr Hywel Francis,MP for Aberavon. The new law does threethings:

• Gives carers new rights to information -Section 1 of the Act places a duty on localauthorities to inform carers of their right toa Carers Assessment.

• Ensures that work, life-long learning andleisure are considered when a carer isassessed - Section 2 will mean that whena Carers Assessment is being completedit must take into account whether thecarer works or wishes to work, anycourses the carer is taking or wishes totake, and any other leisure activities thecarer undertakes or wishes to undertake.

• Gives local authorities new powers (intheory) to enlist the help of housing,health, education and other localauthorities in providing support to carers.Section 3 states that if the local authorityrequests another authority to planservices, that authority must give thatrequest due consideration. Services canbe provided either to the carer or to thedisabled person.

Supporting carers to continue in work, andplacing the carer at the heart of the serviceinstead of expecting them to negotiate theirway through a complex web of providerscould both help give effect to importanthuman rights principles, but it is too early totell what impact these – still relatively soft –powers will have.

Discharge from hospital

Many carers find that the most difficultmoment – often the moment when theirtransition to identifying as a carer begins – iswhen a relative or friend is discharged from

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hospital; at this point they find they eitherwant to, or in some cases are simplyexpected by statutory services to, providehelp and support20. In order to make thiseasier for everyone concerned, hospital staffshould always ask if the patient has a carer.That person should then be introduced to amember of staff who is supposed to act as asingle point of contact throughout theperson’s stay in hospital, and to involve thecarer in decisions that are made abouthospital discharge which may affect them, orthe patient. At this stage, carers have a legalright to a carer’s assessment to have theirneeds addressed.

Any services which are required should beput in place before the patient is discharged,and equipment (such as a commode, or bathboard) should be delivered and ready to usebefore the patient comes home. Informationabout charging for services should be madeclear and a discharge plan should beprepared, which sets out the support that willbe put in place. The discharge plan shouldgive a named person who is responsible forthe patients’ move from hospital to home, aswell as details of their medication andtreatment. Provision of services can involvejoint working between health and social carestaff, and this is not always smooth21.

In theory a carer can refuse to look aftersomeone who has come out of hospital to tryand force the services to make otherarrangements – or ask the person to stay inhospital until the relevant help is available. Inpractice, neither of these are desirablestrategies though they may be all that isavailable as a negotiating tactic to ensurethat services are put in place.

Financial assistance

The Carers UK website lists 13 differentbenefits which may be relevant either to acarer or to the people they support. The twowhich are directly relevant to carers areCarer’s Allowance, and National InsuranceCredits/Home Responsibilities Protection.22

Both have complicated rules which, inpractice, can make them difficult to claim. At the time of writing Carer’s Allowance isworth £45.70 a week and can only be paidto carers who earn less than £82 pounds a

week, and who look after someone whoreceives a qualifying disability benefit for atleast 35 hours a week. It is the equivalent of£1.30 an hour. Claiming the benefit iscomplicated and does not fit with the waymany people provide care. For example forthe purposes of claiming benefit, a weekruns from the start of Sunday to the end ofthe following Saturday. So someone whocares for a relative every other weekendwould not qualify as providing 35 hours carea week because the hours they care on aSaturday are deemed to be in a differentweek from those they care on a Sunday.People who already receive a state pensionwhich is higher than Carer's Allowance orIncapacity Benefit cannot receive Carer’sAllowance because of the overlapping benefitrule. Students, too, studying for more than21 hours a week, regardless of the care thatthey provide, are ineligible for the benefit.

People who claim Carer’s Allowance may alsobe able to have an additional payment of upto £25.80 a week maximum included in thecalculation of their Income Support, JobSeeker’s Allowance (JSA), Housing Benefit, orCouncil Tax Benefit (Rent Rebate in NorthernIreland). Similar rules apply to the calculationof Pension Credit.

National Insurance Credits/HomeResponsibilities Protection is designed toensure that some state benefits remainavailable to carers who are not in paid work,through ensuring their NI contributions areprotected. NI Credits are paid to people whoreceive Carer’s Allowance, and protect both aretirement pension and the State SecondPension (S2P). They can also help a carerqualify for Incapacity Benefit or JSA.

Home Responsibilities Protection (HRP) ispaid automatically to carers who claimIncome Support. In order to receive HRP acarer must be looking after someone for atleast 35 hours a week, for at least 48 weeksof the tax year, and the person they lookafter must get either the care component ofDisability Living Allowance at the middle orhigher rate, or be in receipt of AttendanceAllowance. Once again this is complicatedand people who become carers and whoprovide substantial care which falls acrosstax years miss out.

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■ The Human Rights Act 1998

The Human Rights Act 1998 came into force in October 2000, and incorporated the EuropeanConvention on Human Rights into UK law. Prior to this date, UK citizens who wanted to rely ontheir Convention rights had to take a case to the European Court of Human Rights inStrasbourg – a time consuming and expensive process.

Now, anyone living in the UK is able to bring proceedings under the Human Rights Act in thedomestic courts (as long as they have standing under the HRA, which means that they must bea victim for the purpose of the Act – the violation of which they complain must affect themdirectly). If a law is found by the courts to be incompatible with Convention rights the courts actin different ways depending on the type of law:

• If the law is primary legislation – anAct of Parliament – the courtscannot overturn it. They can re-interpret it in a way which makes itcompatible with Convention rights.For example they could give ajudgement stating that legislationwhich referred to “married couples”should be read as also referring tolesbian or gay partnerships. If it isnot possible to read in rights to anexisting law, the courts can make adeclaration of incompatibility, whichinforms Parliament that a lawbreaches the Human Rights Act. Itis then for Parliament to remedy thebreach, if it chooses to do so. Thiskeeps Parliament as sovereign, anhistoric part of British politicaltradition.

• If it is secondary legislation, forexample the detail of an Act passedat a later date through StatutoryInstrument or through the devolvedAssemblies the courts may re-interpret the law in a way whichmakes it compatible withConvention rights or, if they cannotdo so, they may overturn it23.

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The Human Rights Act only applies to public authorities, or as the Human Rights Act itselfexpresses it “any person certain of whose functions are functions of a public nature”.24 Nomore precise definition than this is provided. When the Bill was debated in Parliament it wasargued that it would be easy to recognise such an organisation, and it was also intended thatthe Act would be wide enough in application to take into account many bodies which, althoughcharities or private companies, now carry out public functions. For example, it was envisagedthat Railtrack, then a private company, would be subject to the Human Rights Act, as wouldGroup 4, the private security company, when it worked under contract to the Prison Service.Sadly, an early case reversed this progressive view of the Act when it was ruled that the charityLeonard Cheshire was not a public authority for the purposes of the Act25. At the moment, it isnot always easy to tell whether a body will, or will not, be considered to be a public authority forthe purpose of the Act. Help the Aged have pointed out that the current application of theHuman Rights Act means that a significant group of service users falls outside the scope of theAct: those who pay privately and have a private contract with the care provider, whether forresidential accommodation or domiciliary care. Since over 90% of care homes and over 60% ofdomiciliary care is provided by private companies or charities, this is a significant loophole26.

The health and social care regulators such as the Healthcare Commission or the Commissionfor Social Care Inspection are certainly public authorities and their inspection frameworksshould enable them to ensure that people’s human rights are protected. These frameworks willbe consistently applied across public, private and charitably provided services so they do givesome protection to individuals. Currently, however, regulatory frameworks such as equalitylegislation or human rights law are not listed in the requirements for compliance.27

The Convention rights which are protected through the Human Rights Act are set out below.Some of them are absolute – they cannot be restricted. The majority are not: they are eitherqualified rights which can be balanced against the rights of others or against issues such asnational security, or they may have restrictions built into the right itself. For example Article 5protects the right to liberty, but it also allows for people to be detained after conviction by acourt, or in order to bring them to trial, as well as for detention in order to prevent unauthorisedentry to a country, or pending deportation or extradition. The rights are:

the right to life gives the absolute right to have your life protected by law.Everyone in the UK has this right – even people who have committed seriouscriminal offences.

gives you the absolute right not to be tortured or subjected to treatment orpunishment that is inhuman or degrading. Inhuman treatment could includeserious physical assault. Degrading treatment can include ill-treatment that isgrossly humiliating: bullying or severe institutional racism might reach thisthreshold. Degrading treatment does not have to be intentionally degrading.Its impact is what is important.

gives you the right not to be subject to slavery or forced labour. This doesnot mean that you have the right to be paid for everything you do – forexample unpaid work as part of a community service order, or in a prisonwould not breach this right.

Article 2

Article 3

Article 4

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gives you the right to liberty and security of person. It means that you shouldnot have your liberty taken away from you through arrest or detention exceptin the circumstances set out in the article itself.

gives you the right to a fair trial. It applies to both civil rights and criminalmatters. It can also apply to dismissal from employment, to the withdrawal ofbenefit, or to a decision to withdraw a license to practice a profession. Theright to a fair trial may be relevant to the disclosure of evidence to two sidesin a case, or to the procedures adopted for certain kinds of hearings.

gives you the right not to receive punishment without law. If you dosomething that was not against the law, or other regulations, at the time, youcannot be penalised for it later.

you have the right to respect for your private and family life, your home andcorrespondence. This gives us a right to privacy in British law for the firsttime. It also includes what the courts call “bodily integrity” – no one caninterfere with your body unless you consent to it (for example in the case ofan operation), and it includes the right to develop as a person. Domesticviolence or sexual abuse could be a breach of Article 8 rights. A fair decisionmaking procedure is particularly important in relation to Article 8 rights.

you have the right to respect for freedom of thought, conscience andreligion, which extends to the ability to practise or show your religious or otherdeeply held beliefs in public or in private.

you have the right to free expression. You can say and write what you like andexchange information freely with other people – as long as it doesn’t harmanyone else. For example, people who use the internet to exchange childpornography could not claim that they have the right to do so under theHuman Rights Act.

you have the right to free assembly and association in a peaceful way. Youcan also join a trade union. So this right might give service users the right toprotest at funding cuts outside a council meeting for example.

men and women have the right to marry and have a family, in line withnational law.

this is also known as the non-discrimination clause. It ensures that peoplecan enjoy all their other rights without discrimination. It uses the idea ofdifferential treatment: whether someone has been treated differently toanother person in the same or a similar situation and if so, whether there is areasonable justification for this. Difference can be due to “sex, race, colour,language, religion, political or other opinion, national or social origin,association with a national minority, property, birth or other status”. Article 14can only be used if it is linked to another right – it is not free-standing.

Articles 8 – 11 can all be restricted in the interests of others.

Article 5

Article 6

Article 7

Article 8

Article 9

Article 10

Article 11

Article 12

Article 14

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Protects the right to peaceful enjoyment of possessions. People cannot takeaway things that are yours, except in limited circumstances – such as in thepublic interest for example when gun ownership is restricted. Even in caseslike these, a law must be passed to enable property to be confiscated. Thisarticle does not prevent a country from having tax laws, though some peoplehave tried to argue that it should. A fair decision making procedure isparticularly important in relation to this area of rights.

Gives the right to an education. No-one can be denied access to the educationsystem. This right makes it possible for parents to seek an education for theirchild which is in line with the parents’ religious and philosophical beliefs.

Protects the right to free elections which must be free and fair, and take placeusing a secret ballot. But countries can still impose some qualifications onthose who can vote: for example the voting age.

Article 1

Protocol

Article 2

Protocol

Article 3

Protocol

The HRA can in some situations impose a special duty – called a positive obligation – toprotect rights. This duty is particularly relevant to Article 2 and 3 rights because they areconsidered to be of such fundamental importance, and to Article 8 rights because of thisarticle’s impact on what the court describes as “intimate interests”. These positive obligationscould in some circumstances apply to harm that one individual might cause another even if thatharm is out of the direct control of an organisation subject to the HRA.

• a duty to provide resources toindividuals in order to protect aConvention right. This means that anorganisation may need to providethe necessary support to someoneto help them protect their ownrights, for example through legal aid.

• a duty to prevent breaches ofConvention rights. This means thatan organisation may have tointervene to protect one individualfrom the actions of another, evenwhere that individual is not under itsdirect control, for examplepreventing a parent from abusingtheir child.

• a duty to provide information tothose whose Convention rights areat risk. This means that anorganisation may have to providemore information than it would havedone prior to the Human Rights Act,in order to allow individuals to makedecisions to protect their own rights.

• a duty to respond to breaches ofConvention rights. This means that ifrights are violated, an organisationmust do something in response. Forexample if someone dies in prison,there must be an effective andthorough enquiry.

Positive obligations may impose:

The state also has a duty to put in place a legal framework which provides effective protectionfor Convention rights – for example it must have laws which deter people from committingmurder, and must have effective systems of investigation if someone is deprived of their life.

The rest of this report considers the impact which the HRA might have on carers and their lives,and assesses whether existing practice delivers services in a way which demonstrates respectfor carers’ human rights.

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1

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■ Findings

Sadly the research reviewed for the purpose of this briefing suggests that the Human Rights Acthas not yet been of value to carers and their lives. At a general level there appear to be somesignificant structural weaknesses in the social care system, as well as evidence of practicewhich suggests that in individual cases, carers may face human rights violations which could beopen to challenge in the courts.

The broader human rights picture

There are four key areas worthy of comment in relation to carers and their human rights. Theseheadings summarise the findings which will be discussed in more detail in the next section.

• Carers’ rights are not adequately considered. The Human Rights Act offersa useful framework for ensuring that the rights of different parties can bebalanced against each other: for example the rights of an older or disabledperson, balanced against the rights of a carer, in order to decide on thesupport that is necessary for all. This framework should ensure that theneeds of everyone in the situation are considered when deciding whether (andhow) to provide a service. It also ensures that people’s essential humanity isrespected, placing them at the heart of the process and truly assessing theirindividual needs.

From the research reviewed for this project it appears that this rarelyhappens: indeed there was no awareness of the Human Rights Act at all.For example many carers do not receive any individual time with a socialworker where they might be able to speak freely about the help they need.When help is needed, health and social services departments fail to worktogether time and again, forcing the carer to subjugate their needs to thedemands of the service. Social services teams regularly tell carers thatthey cannot provide the service the carer wants (for example help withcleaning or shopping) before their needs have even been assessed.Statistics about the decline in health of carers would suggest that thepresent system of carers’ assessments does not demonstrate an adequateconsideration of carers’ human rights before decisions are made aboutservice provision since the outcome puts carers under such severephysical and/or mental strain.

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• Carers’ rights are not real. One of the safeguards which the EuropeanCourt requires for the protection of human rights is that they are practical andeffective. Measures which claim to guarantee human rights cannot be abstractproposals, or measures which will have no practical effect. Yet it is the caseall too often for carers that their rights are simply not real. For example acarers’ assessment should ensure that their needs are considered, andpresumably met, otherwise there is little purpose in the assessment. Yetmany carers have no idea that they are entitled to a carer’s assessment, anduntil the Carers (Equal Opportunities) Act in England and Wales, there was norequirement for a carer’s assessment to take account of the fact that a carermay already be working, or be undertaking training.

In addition when a carer’s assessment is asked for, it is not always takenseriously. Carers UK has heard from carers who are told by a social worker“have a carer’s assessment done, but there’s no money to provideanything”, or “it’ll just get put in a drawer”. It is unsurprising that a quarterof carers told Carers UK that they saw no point in having a carer’sassessment. Without the ability for social services teams to follow throughon a carer’s assessment, carers’ will continue to find that their rights arenot real, and that their hopes of support are raised in vain.

Both of these points are important becausethey show how far the system falls short ofaccepted human rights standards. A recent(and much misreported) case under theHuman Rights Act involved a young woman,Shabina Begum, who wanted to wear a jilbabto her secondary school, thus going againstschool uniform policy. Media reporting hasgiven the impression that the court found MsBegum had a right to wear the jilbab.However a closer reading of the judgementshows that this is not the case. Instead, thecourt found that the school should haveconsidered Ms Begum’s article 9 rights (tomanifest her religion) before making itsdecision and it is on these grounds that shewon her case. Lord Justice Brooke in hisjudgement helpfully sets out a suggesteddecision-making process based on theHuman Rights Act and its framework ofbalancing rights which the school could haveused to achieve its aim: that of having auniform policy which protected other youngwomen from unwanted pressure to wear atype of clothing they might not welcome. Thisframework would have allowed the school tobalance the interests of other young women,and of the wider community, against theinterests of one pupil who wanted to weardifferent clothing, before the governors madetheir decision. But, since the school took asits starting point the fact that it had a schooluniform policy (a blanket policy) which wasthere to be obeyed, it could not demonstrate

that it had carried out this balancing act, northat it had in any way considered MsBegum’s individual circumstances28.

It seems that currently social services teamscould be vulnerable to challenge in the sameway. A framework of balancing rights couldusefully be employed when teams areconsidering carers’ rights and when putting inplace a follow up mechanism for a carer’sassessment. By ensuring that a disabledperson or older person can articulate theirsupport needs, and ensuring that a carer (orpotential carer) is given the opportunityseparately to state the kind of support theycan offer, and the additional help they wouldneed to do this (without assumptions beingmade about what they will provide),potentially competing rights and interests canbe balanced against each other. Thisframework does not mean that socialservices teams will have to put in placeeverything a carer asks for in theirassessment. But it does mean that they willbe able to demonstrate that they haveconsidered the carer’s rights before theymake a decision to deny a service, ratherthan relying on a blanket policy which is opento legal challenge. The framework ofbalancing rights would allow consideration ofboth the interests of the older or disabledperson concerned, as well as the interests ofthe wider community (presumably financial),alongside the rights of the carer.29

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• Resources are inadequate to allow rights to be protected. The literaturereviewed presents a picture of carers who find that the services they need arenot available to them because of inadequate resources – whether this is costor staff time. A carer who asks for support in helping someone into bed mayfind that help is available – but only at six in the evening, when the personwould not normally want to go to bed until ten. Home help and other help withhousehold tasks is routinely unavailable and yet for many carers this is anessential support in their lives: they can manage the care if someone elsecan clean the house, mow the lawn, or do the shopping30. But they cannot doeverything and when they try, they find it takes over their life, meaning theylose friendships and opportunities to interact with the community. In manycases, their health suffers.

It may be the case that the lack of resources available in order toguarantee rights could itself be considered a breach of the Human RightsAct, although the courts have shown themselves to be reluctant tointervene in the allocation of resources, particularly when decision makerssuch as national or local government make a strong case that the costswould simply be disproportionate to the benefits.

• Good practice need not be expensive. There was some evidence ofimaginative good practice which did help to safeguard carers’ human rights.For example St Helens in Merseyside runs a 24-hour carers’ helpline whichenables carers to be quickly identified in the case of an emergency, andadditional support arrangements to be put in place. This means that carerscan take up medical treatment in an emergency, safeguarding their Article 2rights. One local authority tried to find new ways to tell carers about thesupport they are entitled to by running stalls at market day, taking informationinto local communities, which could be seen as an imaginative way of meetingtheir positive duty under Article 8 to provide information in order to helppeople claim their rights, particularly taking account of the different needs of– in this case – rural residents. But such good practice was thin on theground.

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Specific human rights issues

This section of the report considers humanrights issues which affect carers in moredetail, focusing on some specific rightsprotected by the Human Rights Act. It alsocaptures good practice where it exists,particularly practice which might act as aguarantee of Convention rights.

Article 2: right to life

It may sound extreme to suggest that poorpractice in relation to support for carerscould lead to violations of Article 2, but thiscould indeed be the case. Carers havedelayed emergency medical treatment thatcould have cost them their life, or put theirlives at risk during the course of treatment,because of inadequate support. Here arefour examples31:

“When I had a heart attack and was rushed to A&Ethere was no-one I could contact to arrange carefor my disabled husband. I had to arrangeeverything myself by phone. I spent more time inthe phone box than I did in the hospital bed.”

“I was in hospital on a morphine drip and being fedby a tube, trying to find out what would happen tomy daughter. I was told ‘you’ve had your six weeksrespite care break this year’. I had to arrange formy daughter to be looked after by family andfriends”

“I became ill overnight. I was haemorrhaginginternally and needed immediate hospitaladmission. I called Social Services emergency line.In short it took 10 hours to get adequate helporganised before I could get myself to hospital. Theconsultant said I was lucky not to have died.”

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The example of the carer who was told thatservices would be deducted from her respitecare is not alone – another carer who foundthat she needed life-saving heart surgeryhaving gone into hospital for a routineoperation was forced to extend herhusband’s stay in residential care by twoweeks and was told that this would bededucted from her allocation of services forbreaks from caring. It is hard to see howsuch a blanket policy can be consideredcompliant with the Human Rights Act – andeasy to see the risk to the lives of carersthat this lack of support presents.

Of course in some cases the person at riskof an Article 2 violation is not the carer – it isthe person who they support. Yet this doesnot seem to be recognised when a carer’sassessment takes place. ‘Back Me Up’ foundthat 9 out of 10 carers said planning for anemergency was important to them. Yet onlyone in three carers have had an assessment– and of these only three in fiveassessments addressed emergencies. Onecarer was told “if I am ill my husband couldgo into respite care, but they only have twobeds so are almost certain to be full.”Another’s assessment was unsatisfactory:“emergencies should have been discussedwith some serious consideration of whatwould happen. The social worker just wrotedown that there would be no one to replaceme as the primary carer. This is not goodenough.” 32It is not – and it does notdemonstrate that the Article 2 rights of theeither the carer or the person they supporthave been considered.

More attention needs to be paid to ways toensure that carers feel able to take upemergency medical treatment without puttingthe person they support at risk if Article 2rights are to be guaranteed. For example StHelens in Merseyside has a 24-hour yearround helpline, and provides carers with aneasy identification card in case ofemergencies, to ensure that their caringresponsibilities can be picked up andappropriate support put in place33. St Helensreviews the plan drawn up with each carer onan annual basis. Other local authoritiesprovide a key fob with an emergency contactnumber, which together with an access code,allows the person answering the phone for

the local authority to see the emergency plandiscussed with the carer, and put it intoplace.

Article 3, right to be free from inhuman ordegrading treatment

Many of the UK’s six million carers sufferpoor health: for many of them, the healthproblems they experience are a directconsequence of the caring responsibilitieswhich they take on. In some circumstances,this might constitute a violation of Article 3which offers protection from inhuman ordegrading treatment (even if this is notdeliberate). Carers who suffer severe mentalhealth problems or breakdowns as aconsequence of the strain which the carethey provide has caused, or who sufferphysical illness caused as a result of caring,might be able to argue that the state shouldhave taken steps to prevent this, particularlyif it is aware of the problem through a carer’sassessment or other conversation with socialservices or health care staff.

The principle is illustrated by the case ofPrice v UK which found a violation of Article 3when a disabled woman was sent to prisonwhere she faced conditions which meant thather disability placed her at a significantdisadvantage: she could not use the bed andhad to sleep in her wheelchair because ofthe risk of sores, could not reach any lightswitches or emergency buttons and wasunable to use the toilet. She was seen by adoctor, who noted that the facilities wereunsuitable for disabled people. In ruling thatshe had experienced degrading treatmentJustice Greve said “It requires no specialqualification, only a minimum of ordinaryhuman empathy, to appreciate her situationand to understand that to avoid unnecessaryhardship - that is, hardship not implicit in theimprisonment of an able-bodied person - shehas to be treated differently from otherpeople because her situation is significantlydifferent’34.

The same principle is true for carers where itis obvious that they are, because of theircaring responsibilities, facing risks to healthwhich are not implicit in the lives of otherswho do not care. Carers UK’s report In poorhealth tells of a carer who had a stroke

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which her GP attributed to the stress ofcaring for her husband. Her strokesubsequently compelled her son to give upwork to care for both his parents, thuspushing the risk onto the next generation35.

Another carer with a serious back problemwho was awaiting surgery was forced tocontinue to support her daughter to showerafter the local authority withdrew the two carestaff who had previously provided help afteran assessment that it was too risky for thehealth of their backs. The risk to the carercould have been reduced with an adaptedshower, but the waiting list was a year long36.This example, and others, in the report,demonstrate the potential for commoninterest between the disability rightsmovement and carers’ organisations tochallenge poor practice and restrictiveattitudes to health and safety withoutadequate consideration of service users’rights.

In another case, a carer with gall-bladderproblems and gynaecological problems whichboth require surgery is caring for both herfather (who has a life-threatening heartcondition, requiring home oxygen) and hermother (who is currently recovering fromcancer treatment, and who was previouslythe main carer). The carer is refusing surgeryfor her own medical problems because shecould not continue to care after surgery. As ahealth and social services professional sheis adamant that services could not providethe level of care required to allow her toattend to her own recuperation37.

There is also extensive research whichdocuments the impact of caring on mentalhealth; the British Household Panel Surveyfound that carers were more likely to reporthigh levels of psychological distress, andCarers UK’s own research has found that52% of people providing substantial amountsof care had been treated for a stress relateddisorder.

Good social support and breaks from caringhave a positive impact on the ability to copewith care: it is arguable that failing to takeaccount of the risks to a carers’ health whichtheir caring responsibilities may present,failing to put in place services which could

prevent a decline in either physical or mentalhealth, or failing to provide services whichcould allow a carer to access medicaltreatment might in some circumstancesconstitute a violation of article 3.

Article 8; right to respect for private andfamily life

Article 8 with its broad application isparticularly relevant to carers. A significanthuman rights principle for the purpose of thisreport is that of the ability to “ensuredevelopment without outside interference, ofthe personality of each individual in hisrelations with other human beings.”38 Thisidea of an “inner circle” within whichindividuals can live their lives free frominterference extends to the development ofrelationships with others, as well as workingrelationships or other business activities.

Of course, Article 8 as a qualified right willneed to be balanced against the rights ofother individuals and the interests of thewider community. Often in the case of carersthis will mean balancing their rights againstthe rights of an older or disabled person (whoalso have article 8 rights). From theexperiences of carers as told to Carers UK, itappears that this balancing act rarely takesplace. The research found a number ofpotential human rights violations which relateto Article 8, are common to carers’experiences, and illustrate the scope of theproblem.

First of all many carers still face anassumption from social services that theywill be willing or able to take on caringresponsibilities, together with a lack ofawareness that many carers will want andneed to carry on earning. This lack of choiceabout caring roles may be particularly difficultfor rural carers: four out of five rural carersconsidered that they had no “real choice”about their role as there were so fewalternatives39.

‘Missed Opportunities’, published by CarersUK in 2003, found that 69% of carers whohad been in paid work since April 2001 (afterthe Human Rights Act came into force) foundtheir caring responsibilities had either led toreducing their hours, or to leaving work

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altogether. This appears to be a particularly acute problem forwomen, who are far less likely to continue in employment afterthey take on caring responsibilities than men40. In addition,since the peak age for taking on caring responsibilities is inthe fifties, it is likely that many of these women will also havehad a traditionally female career pattern which involvedperiods out of the labour market whilst bringing up a family.The combination of these two factors leaves many women whocare facing poverty in retirement because of the impact ofcaring on their pensions. The broken work record affectsboth state and private pension contributions

It is not surprising that 26% of working age carers surveyed byCarers UK said that given the right support they would like toreturn to work, or increase their working hours, since financialdifficulty during periods of caring is also common. Carers UKsuggest that 77% of carers become financially worse off afterbecoming a carer41 and that one in five carers cuts back onfood, and one in three has problems paying fuel bills. All ofthis interferes on a carer’s “inner circle” as it would beunderstood in relation to Article 8.

Failing to take account of carers’ individual circumstances andinstead relying on blanket methods of assessment which relyon the assumptions of staff could constitute a breach ofarticle 8.

An additional problem is that sometimes carers find that therights of paid care staff, when balanced against their ownneeds, always take precedence. For example a carer inMerseyside found that it was impossible to challenge adecision that paid care workers should empty a basin of water,used to wash her disabled daughter (who was incontinent) inthe kitchen sink, (crossing through a previously private roomto do so) instead of in the upstairs bathroom. This apparentlytook place on occasion while the carer was preparing anevening meal in the kitchen. The decision was apparentlymade to protect the rights of the paid care staff, although thecarer remains concerned about the health risks to her, and toher daughter44. Again the framework of balancing rights whichthe HRA provides could be useful in such situations.

Carers could more actively challenge such decisions if theyknew their rights, and sometimes under article 8 a positiveduty exists to provide information to people to enable them tomake decisions about their rights. Yet many carers receive noinformation: a Carers UK study in 2003 showed that only 32%of carers reported that they had been given a carer’sassessment, and of those who had not been given one,almost half (45%) did not know they were entitled to one. TheCarer’s (Equal Opportunities) Act may have some impact onthis low assessment rate, and should also enableassessments to take account of a carer’s employment ortraining commitments, but it is too early to tell.

“I was told by socialservices to give up my jobto care after my husbandhad a stroke. I did not. Istuck to my guns and theyreluctantly gave a homehelp for three lunchtimevisits a week. Then afterthree months it waswithdrawn. Thank heavensfor my sympatheticemployer.” 42

“When I had my carer’sassessment I was lookingfor work, yet there wasnothing offered ordiscussed which would haveenabled me to go to work.The social worker assumedthat I would not beworking.”

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Even when an assessment is carried out,carers see a lack of follow through to providethe services identified. In some cases thisis due to an apparent blanket policy of notproviding certain services, regardless of thecarers assessed needs, which is likely to beunlawful under the Human Rights Act. It isnot surprising that a quarter of carers saw nopoint in having a carer’s assessment whenso often they find it makes no difference andthere are no appropriate services to supportthem in their caring role. Carers said:

“I have never received any services and nonehave been offered. I’ve not been given anyinformation on what might be available. I feeltotally ignored by all” 45

“Our social worker told us that although theassessment was our right, it would be put ina drawer and would actually make nodifference. What is the point of anassessment if they won’t deliver theservices?”

“I am always the one who has to chasethings up and unless I ask I am never toldwhat help is available.” 47

“While my husband is entitled to freepersonal care by a care assistant, his choicethat I continue attending to his bathing,dressing etc does not entitle us to free orsubsidised domiciliary help. I feel carers andthe cared for should be offered a choice.” 48

On a more positive note, many saw directpayments as a way round some of theseproblems, though they struggled withpaperwork. The government’s plans, set outprior to the election in Independence, well-being and choice should help to make directpayments easier to use, and ensure that theycan be better used to protect carers’ humanrights.

A lack of consideration of carers’ needs andfailure to provide information leads toisolation. Many carers point to their inabilityto continue to develop family and otherrelationships (including working relationships)during caring, or to have any time forthemselves at all to pursue outside interestsor even to take some time out of their day torest, all of which could be caught by Article

8. Four in five carers, for example, have givenup on holidays49 and when considering thisfact it needs to be remembered that caringresponsibilities may last for many decades.

It is not surprising that work carried out byWales Carers Alliance suggested that a keypriority for carers was the need for a break50.Yet this was discussed in only 67% of carer’sassessments, (employment was discussed inonly 17%). The example of a carer’s dailydiary set out below illustrates vividly thedifficulty which carers face in balancing theircaring responsibilities with other aspects oftheir life.

“The reason I haven’t had a major emergencyyet is only because I’m very careful not to beout of the house for more than 2 hours. Irarely make appointments in case they donot fit in with our routine; I don’t have asocial life and we don’t go on holiday.Whenever I go out I’m clockwatching thewhole time to make sure I have plenty oftime to return home.” 51

“The social worker undertaking theassessment was very pleasant and tried tobe helpful but it was difficult to talk in detailwith my husband present. It would havebetter if I could have spoken to her inprivate.” 52

“I have not had time off for fourteen months,not a night or a weekend or an evening. I hada week’s holiday when my brother could giveme some time, but he dictated the days Icould take.” 53

“I was worth £25- 40,000 in the openmarket. I lost job skills, advancement,training, opportunity, social freedom, socialmobility, holidays, the list is endless. Ibecame unfit.” 54

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In some cases lack of support mitigatesagainst being able to continue importantfamily relationships between those doing thecaring and those whom they support: thiscould also potentially be subject to challengeunder Article 8, particularly when it relates toseparating older couples who would prefer tostay together. It again shows the sharedinterests which exist between carers’organisations and the disability rightsmovement.

“It feels like a human rights issue – myhusband can’t get home care because offunding – his only option is residential carefor older people which is tantamount toalmost us being divorced. It is not right” 55

This exclusion leads to a risk to carers’mental and physical health. ‘In Poor Health’,published by Carers UK, found that 21% ofcarers in the UK providing substantial careare not in good health compared to 11% ofthose who do not have caring responsibilities(using data provided by the 2001 Census).56 An example illustrates the point:

“Joan cares for her son, David, who hascomplex disabilities both physical, andlearning difficulties. She provided care 24hours a day, seven days a week. Withoutsupport her health quickly began to suffer.As a result of a lack of practical support shehad a nervous breakdown. Because she didnot apply for benefits immediately it is likelythat she will have gaps in her pension recordlater in life – leading to lasting poverty”. 57

These examples show how a patchwork ofpoor practice combines to make carers –particularly those providing substantial care –vulnerable, at risk of harm to health, andsocially excluded. Yet a human rightsframework of balancing rights could lead to adifferent outcome.

A good example of the outcome of such abalancing process is illustrated in a casebrought by two young disabled womenagainst East Sussex County Council. TheCouncil refused to allow its care workers tocarry out any work involving lifting the youngwomen unless they used a hoist; the sisterswanted from time to time to be able to beable to go riding, shopping or swimming and

in such situations a hoist could not be used.Because of the ban on any form of manuallifting, they were precluded from taking partin these activities. The court had to find abalance between the rights of the sisters totake part in the life of the community and beable to develop their personalities, and therights of the care staff to be prevented fromharm.

Finding for the sisters, Justice Munbystressed the importance of their Article 8rights. His judgement says: ‘The recognitionand protection of human dignity is one of thecore values - in truth, the core value - of oursociety and, indeed of all societies which arepart of the European family of nations andwhich have embraced the principles of theConvention...The other important conceptembraced in the "physical and psychologicalintegrity" protected by Article 8 is the right ofthe disabled to participate in the life of thecommunity...This is matched by the positiveobligation of the State to take appropriatemeasures designed to ensure to the greatestextent feasible that a disabled person is not"so circumscribed and so isolated as to bedeprived of the possibility of developing hispersonality"58.

Another case involving a challenge to theEuropean Court of Human Rights by a gypsyfamily who were fighting eviction from a localauthority site expresses the principle in adifferent way, finding that the vulnerableposition of gypsies as a minority meant thatsome special consideration had to be givento their needs, and that the UK had apositive obligation to facilitate their way oflife.59

The government’s own research suggeststhat carers, too, can be considered to be asocially vulnerable and excluded minoritygroup with very different life chances to therest of the population60. So the identificationand application of these principle to carerssurely follows. There is therefore aconsequent positive obligation on the UKunder the Human Rights Act to address thecauses of this social exclusion by takingappropriate steps to minimise the impact ofcaring on the health, social or employmentopportunities of carers ensuring that they cantake part in the life of the community, are

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able to continue to make meaningfulrelationships, and have their human dignityrespected, both during the period of theircaring, and for the future. 61

Information relating to the situation andexclusion of carers is not new. It has beenextensively documented and governmentdepartments are well aware of the impactwhich caring can have on the UK’s six millioncarers. Yet no meaningful and consistentlyapplied measures seem to have been put inplace to compel local authorities and healthauthorities to provide services and supportthat could minimise the impact of caring onsocial exclusion. It is important to rememberthat this exclusion is not only for the periodspent caring. It may last throughout lifebecause of the impact that caring can have(particularly for women) on the lack of apension in later life and the consequentimpact of poverty.

Carers Wales, in discussions with localcarers, found that they expressed this wishas “the right to an ordinary life”: it is surelythis that Article 8 should guarantee and itcan only be a matter of time before the useof the HRA to challenge poor practice inrelation to carers becomes routine. Properguidance from government in relation to theHuman Rights Act could help to prevent suchlegal challenge and ensure that services aredelivered in line with the Act’s principles.

Article 2, protocol 1: right to an education

There are a number of young carers in theUK: figures from the 2001 Census suggestthat 175,000 carers are under 1862. A recentreport used data relating to 6,178 youngcarers to predict that 27% of carers ofsecondary school age and 13% of carers ofprimary school age have problems withmissing school63. This is a decrease on

previous years, but still a cause for concern,and potentially a human rights violation. Theincidence of missing school is higher whereyoung carers support someone who has drugor alcohol problems where 34% are missingschool. The authors also note that “at morethan a fifth of all young carers the overallproportion experiencing educational problemsis still high. This remains more marked in the11-15 age group – the age when youngpeople are making educational decisions,taking formal examinations and preparing fortheir future.”64

Since only 18% of young carers had beenassessed for their needs, and given that afifth of families with young carers received nosupport services at all apart from thoseprovided by their children65, it is hard to seehow adequate support could be provided toyoung carers to enable them to attend schoolin the same way as a child without caringresponsibilities. In some circumstances thisis likely to interfere with a child’s right to aneducation66.

Caring responsibilities can also inhibit adultcarers opportunities for equal access toeducation. The Carers (Equal Opportunities)Act may help address this issue in Englandand Wales, but it is still to early to assessthe impact of this legislation.

From this evidence there aresome potential human rightsissues which remain unsolveddespite the Human RightsAct’s existence. Is thereanother way forward?

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■ Recommendations for Action

This report suggests that public authorities may be acting unlawfully by failing to ensure thatthey do not interfere with carers’ human rights in the provision of services. It also suggeststhat the government may be failing to meet its positive obligations under the EuropeanConvention on Human Rights to take active steps to secure protection for human rights. Thisfinal section sets out six recommendations which could if implemented remedy the situation.

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Legislation to prevent discrimination against those with caringresponsibilities

The first is action for government through the development of legislation toprevent discrimination against people on the grounds of caringresponsibilities. The Discrimination Law Review recently announced bygovernment which is to consider the development of a Single Equality Act is auseful forum to take forward this recommendation. There are a number ofways in which this protection could be provided and more discussion isneeded about its specific form. Some examples are: caring responsibilities asa free standing ground for protection against discrimination; a new duty onpublic bodies (including health bodies) to take caring status into account whenproviding services; amendment of the Disability Discrimination Act to coverpeople facing discrimination through association with a disabled person;extension of the concept of reasonable adjustment to protect carers inemployment. Whatever the change, it should be able to deliver protection forpeople who provide support and care for older people as well as disabledpeople. Such legislation could ensure that the UK government has provided aneffective legal framework to guarantee human rights, thus meeting thepositive obligations that could be imposed under the Human Rights Act. InNorthern Ireland this issue could be addressed through the Bill of Rightsprocess which is currently being run by the Northern Ireland Human RightsCommission.

Guidence for service providers urgently needed

The second is action for all government departments with responsibility forhealth and social services which should urgently issue practice guidance toset out the extent of the potential impact of the Human Rights Act on carersand services for carers, to ensure that service providers are clear about theextent of their responsibilities. Guidance issued to explain the Carers (EqualOpportunities) Act, and other relevant legislation in Scotland and NorthernIreland should be reviewed to ensure that it also takes into account theimpact of the Human Rights Act.

Advice and information on carers rights

The third is once again action for government which should consider providing,or funding, advice and information services which can give carers independentand authoritative advice on their rights and signpost them to services whichcan help to protect their rights. A service which is based on signposting alone(particularly if it is to a service which simply says “we don’t provide that forcarers”) may not meet the positive duty to provide information to people abouttheir rights. Information as well as signposting is necessary if people are tobe able to act to make decisions about their rights.

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Closing comments

All of these measures should ensure thatcarers’ human rights are better protectedand that their lives change for the better. TheHuman Rights Act gives carers for the firsttime the potential to claim some “hard”rights, should they wish to do so. And theAct’s framework of balancing rights, just asimportantly, gives service providers anopportunity to recognise carer’s humanity, totreat them as equal partners in a situation.By doing so, we have an opportunity todemonstrate that their care, given freely, isvalued and supported.

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Ensure health and social services are complying with human rightsstandards

The fourth is action for inspectorates with an urgent need for a themed andseamless inspection by both the Healthcare Commission and the Commissionfor Social Care Inspection (and their equivalents in the nations of the UK) ofservices which are provided for carers. Compliance with human rightsstandards should form part of the assessment criteria for these inspectionsand the outcome should be to ensure that providers are clear about theirresponsibilities under the Human Rights Act, particularly the positiveobligations which they may have.

Investigate whether the Human Rights Act is being correctly applied

The fifth is action for the proposed Commission on Equality and Human Rightswhich should conduct an early investigation of the services provided fordisabled people, older people and carers, with the aim of assessing whetherthe Human Rights Act’s framework of balancing rights is correctly applied. InScotland this could be a joint project between the CEHR and the ScottishHuman Rights Commission. In Northern Ireland it would best be taken forwardby the Northern Ireland Human Rights Commission and the EqualitiesCommission. One suggested outcome could be to help service providersbetter to understand their responsibilities under the HRA, as well as to explainhow they might use a framework of balancing rights in a practical way todeliver better services.

Raise awareness about human rights of disabled people and older peopleand of those who are providing support or care

The sixth is action for the carers’ movement which should take the humanrights agenda forward through its training and awareness raising, working toensure that the human rights of both disabled and older people and thosewho providing support or care are respected. This should include theproduction of material for carers about the Human Rights Act, and may includethe identification of legal cases which could be supported under the Act.

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Acknowledgements

With thanks to Luke Clements for his thoughtful comments on developing some of thesehuman rights arguments; to Liz Sayce for her willingness to debate these issues; toMitchell Woolf for offering a sounding board for the idea at an early stage, and to all thestaff at Carers UK, Carers Northern Ireland, Carers Wales and Carers Scotland for theircomments and contributions to this report.

1 See www.statistics.gov.uk2 www.carersuk.org/aboutus for this and the following figures.3 This follows the concept of independent living, which was developed by disabled people. 4 www.statistics.gov.uk, see the section on carers5 Parliamentary briefing produced by Carers UK, The Carers (Equal Opportunities) Act 2004,

page 5, available at www.carersuk.org6 In Scotland the equivalent figures is £5 billion; in Wales it is £3.5 billion. See Without Us…?,

published by Carers UK in 2002. 7 Census 2001 found that over 225,000 people who provided more than 50 hours of unpaid

care a week said they were in “not good health” themselves. More than half the people

providing this much care were over 55. 8 Carer’s Allowance of £45.70 is available to those who provide more than 35 hours care a

week. Those carers who already receive a state pension and who are eligible for Carer’s

Allowance will only receive one payment – whichever is higher. 9 For example disabled people have fought hard to be able to define the support they need and

potentially to control that support through mechanisms such as direct payments.10 Carers – the sympathy and services stereotype, Clements, in British Journal of Learning

Disabilities, 32, 6-8, 2004. 11 For a fuller explanation of community care law as it relates to carers , see Community care

and the law, Luke Clements, Legal Action Group, 200412 Ibid, para 11.1113 Caring about Carers: A National Strategy for Carers, Department of Health, 199914 A parliamentary briefing produced by Carers UK to support the Carers (Equal Opportunities)

Act 2004 states that only half of carers were told about their rights when the person they

were caring for was assessed. 15 2001 practice guidance, in Community Care and the law, op cit, para 11.3716 Improving the life chances of disabled people, Strategy Unit, January 200517 Community Care and the law, para 11.5118 Ibid, paragraph 11.6519 Carers in Scotland cannot receive services (as in direct payments for carers under the Carers

& Disabled Children Act) in their own right but instead services are provided to the cared-for

person or the carer can be provided with advice or, for example, referral to a carers service). 20 See for instance, Heaton J, (1999) Carers' experiences of hospital discharge and continuing

care in the community in Health & Social Care in the Community; March 1999 v7 Issue 2;

p91.

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21 During the course of researching and writing this report the author became a carer. As an

example of the difficulty caused by discharge from hospital there was no carer’s assessment

for any of the family; no named person to contact; no support put in place after discharge

from hospital; and no joint working between the health and social services social work

teams. Subsequently the local authority social services support has been extremely good. 22 The 13 are: Carers’ Allowance, Income Support/Pension Credit; National Insurance

Credits/Home Responsibilities Protection; Attendance Allowance; Disability Living Allowance;

Incapacity Benefit; Working Tax Credit; Child Tax Credit; Health benefits; Social Fund; Council

Tax Benefit; Housing Benefit; Jobseeker’s Allowance. 23 The only exception to this rule is constitutional law instruments passed by the Northern

Ireland Assembly which cannot be struck down.24 Human Rights Act 1998, section 6(3)(b)25 For an excellent discussion of this case and of the question “what is a public function?” see

Kate Markus’s essay Leonard Cheshire Foundation: What is a Public Function? in European

Human Rights Law Review, Issue 1 2003.26 Towards improving human rights protection of people receiving community care services from

private and voluntary sector care providers, Help the Aged, January 2005 27 Ibid, paragraph 11.28 R (SB) v Denbeigh High School, 2005] EWCA Civ 19929 For more on this and for user friendly examples of a decision making process which uses

Human Rights Act principles, see Human Rights Act Toolkit, Jenny Watson and Mitchell Woolf,

Legal Action Group, 200330 Both examples from Missed Opportunities published by Carers UK, June 2003, page 931 From Back Me Up, Carers UK, January 2005. 32 Both examples from Back me up, Carers UK, January 2005 33 Who cares for the carers?, in the Times, 8 February 2005 34 In Price v UK, [2002], UKHL 4135 In Poor Health, Carers UK, December 2004, page 536 In Missed Opportunities, Carers UK, December 2004, page 2137 From Carers Northern Ireland’s case portfolio, April 200538 Botta v Italy, in Human Rights Digest, Keir Starmer with Iain Byrne, Blackstone Press, 2001,

paragraph 24.1 page 225.39 Rural carers, Carers UK, page 240 Census 2001 figures suggest that there is a higher proportion of men than women who are

both in paid employment and providing more than 50 hours care a week. 41 In Poor Health, op cit, page 742 Missed Opportunities, op cit, page 1743 Ibid, page 2144 From Carers UK helpline, spring 2005 45 Missed Opportunities, op cit, page 846 Ibid, page 1547 Ibid, page 26

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48 Ibid, page 2849 Tackling poverty, www.carersuk.org50 Wales Carers Alliance, Carer Assessment Survey, September 2004, page 551 Back Me Up, Carers UK January 2005, page 752 Carers Assessment Survey, September 2004, Wales Carers Alliance, page 1353 Response from a carer to Carers UK website, spring 2005 54 Ibid55 Missed Opportunities op cit, page 2756 In Poor Health, Carers UK, December 2004, page 357 Ibid, page 658 R v (1) East Sussex County Council (2) The Disability Rights Commission (Interested Party), 13

Ex Parte A, B (by their litigation friend the Official Solicitor) X, Y (2003), 2003] EWHC 167

(Admin)59 Connors v UK (2005) 40 EHRR 960 Excluded Older People, Social Exclusion Unit, 15 March 2005 61 I am grateful to Luke Clements for his help in developing the application of the Convention in

this way.62 From Dearden and Becker, Young Carers in the UK: the 2004 report published by Carers UK

and the Children’s Society 2004 63 Ibid, page 364 Ibid, page 1165 Ibid, page 1266 Disabled parents have long campaigned for more support to be provided to them as parents,

and for the increased cost of parenting which disabled people face to be properly reflected in

the level of benefit provided. See The right support, by Jenny Morris published by the Joseph

Rowntree Foundation.

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CARERS

Impression Print and Design NI Ltd. 028 9260 4432

“Carers look after family,partners or friends inneed of help becausethey are ill, frail or have adisability. The care theyprovide is unpaid.”

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CARERS UK

Carers UK 20-25 Glasshouse Yard, London EC1A 4JTTel. 020 7490 8818 [email protected] www.carersuk.org

Carers Scotland 91 Mitchell Street, Glasgow G1 3LNTel. 0141 221 9141 [email protected] www.carersscotland.org

Carers Wales River House, Ynys Bridge Court, Gwaelod y Garth, Cardiff CF15 9SSTel. 029 2081 1370 [email protected] www.carerswales.org

Carers Northern Ireland 58 Howard Street, Belfast BT1 6JPTel. 028 9043 9843 [email protected] www.carersni.org

Membership Hotline 020 7566 7602 [email protected]

CarersLine 0808 808 7777 (freephone)(free advice from 10am - 12pm and 2pm - 4pm Wednesday and Thursday)

Registered charity number 246329Registered in England and Wales as Carers National Association No. 864097

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02092 Carers NI · Whose rights are they anyway?: Carers and the Human Rights Act Executive Summary “I became ill overnight. I was haemorrhaging internally and needed immediate