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Feature

posted 1 Sep 1999 in Volume 4 Issue 6

Carers of older people with learning disabilities. Issues and implications

Increased longevity can be regarded as one of the great social achievements of the twentieth century. For the first time, in European and North American countries, increased numbers of people with lifelong disabilities are surviving into old age.

In particular, there have been a number of studies which indicate that people with learning disabilities are living longer, and that the improvement in their life expectancy can be linked to better living conditions, together with improvements in medical care and social support ¹ , ² . "Children who might have died in infancy now survive to adulthood; and adults are living longer".³. (A brief note regarding terminology - in 1991, the Department of Health adopted the phrase "people with learning disabilities" instead of mentally handicapped people, and this has become a widespread descriptive term, although "intellectual impairment/disability" is also used within some professions, such as psychological services).

Current research⁴ indicates that in the UK, there is a high prevalence of people with severe intellectual disabilities between the ages of 30 and 40, partly attributable to the general 'baby boom' of the mid 1960's. Prevalence rates of severe intellectual disabilities at birth reached a peak in the mid 1960's, at a time when more babies were born generally, followed by a slight decrease in the mid 1970' ⁵ , ⁶ . Combined with a dramatic increase in the life expectancy of this group of people, the result is a predicted future increase in demand for services generally, and also for services associated with dementia, particularly relating to Alzheimer's disease in adults with Down's Syndrome over the age of 40 ⁷ .

The national picture in the UK shows that there are more adults with learning disabilities over the age of 45 than there are children, almost half of whom still live with their parents ⁸ . Many of these adults may have other disorders or conditions in addition to their learning disabilities (most commonly these include - epilepsy, hearing loss, communication difficulties, congenital heart disease, and mental ill-health). 3. This means that there are many older carers who are continuing to care for their ageing dependant adult son or daughter, often dealing with issues relating to their own ill-health as well as that of their relative, and having to face the likelihood that their relative will outlive them. It is timely therefore to consider some of the implications of this trend towards an ageing population of people with learning disabilities. This article highlights some of the issues for older carers for those professionals seeking to advise them.

During the past 25 years, there have been major changes in policy and provision of learning disability services, with a shift towards community care and social services. In the past, the ageing of people with learning disabilities was both partial and hidden - many people died at a young age, and those who survived into adulthood were likely to be either confined to institutions, or kept hidden from the public by protective families. The trend away from institutional care towards community living was in part driven by a belief that people with learning disabilities should be enabled to lead ordinary lives in local communities. This view was endorsed by the Jay Report (Committee of Enquiry into Mental Handicap Nursing and Care 1979), which stated that - "Mentally handicapped people have a right to enjoy normal patterns of life in the community". In part also, the policy shift towards community living was driven by a desire to cut the costs of care - community care has long been viewed by governments as a cheaper option to institutional care. Community care in reality is care either by paid professionals, or more commonly, by unpaid (usually female) family members. As noted previously, almost half of the national population of adults with learning disabilities live with their parents, many of whom are themselves older - 27% of the total number of 5.7 million informal, unpaid, carers in Britain are aged over 65 years⁹ .

In terms of current legislation, older carers of people with learning disabilities have much in common with those caring for other sections of the population, in that there is no separate body of law dealing with people who have learning disabilities and, as such, the law that concerns them must be extracted from general law. In practice, the law tends to group mental illness and learning disability together under "mental health" (specifically the Mental Health Act 1983, which defines different categories of mental disorder, including both mental impairment and severe mental impairment). While beyond the scope of this article, it is, however, important that the different needs of these distinct groups of people are acknowledged ¹⁰ .

Readers will be aware that older people and disabled people have the right to be assessed for the community care services that they need ¹¹ , and that local authorities, generally, have a duty to ensure that these needs are met within available resources. Section 2 of the Chronically Sick and Disabled Persons Act 1970 is central to community care. It is under this provision that the majority of people obtain domiciliary care services, adaptations, equipment, day centre support, mobile meals, or other practical assistance necessary for the individual's "greater safety, comfort and convenience". It is these same community care services that carers say they most need - services which enable people to remain in their own homes, the preferred aim of community care policies.

The decision made in 1997 by the House of Lords in the Gloucestershire¹² case has left many local authority social workers confused about their statutory obligations when assessing a person's need for services. Following the judgement, which applies to section 2 CSDPA, resources can be taken into account during the assessment process in deciding whether someone needs a service, and whether that service ought to be provided. It is likely that in future, any judicial reviews will increasingly focus on the adequacy of assessments when decisions are made about the allocation of resources and whether appropriate procedures have been followed. It is therefore vital that disabled people and their carers understand what their rights are under community care legislation, and that they seek legal advice when considering any challenges to local authorities' decisions.

The introduction of the Carers (Recognition and Services) Act 1995 sought to emphasise the importance of carers and to recognise that they have needs in addition to those of the people they look after. Carers are entitled on request to an assessment of the care they provide and of their ability and willingness to continue providing care, but only if they provide regular and substantial care, and - crucially - only if the person they care for is undergoing an assessment of their own needs at the same time. In practice, many Local Authorities had already incorporated some form of carer assessment into their procedures for assessing the needs of disabled people, prior to the implementation of the Carers Act. For adults with learning disabilities, it is often difficult for them to be fully involved in the assessment process due to issues relating to their level of intellectual impairment, or due to communication problems. Therefore, carers of such people play a crucial role in the process of assessing need for their relative.

In its White Paper "Caring for Carers" published earlier this year, the Government sought to re-emphasise the vital role that carers play in looking after those who are sick, disabled, vulnerable or frail. A substantial policy package for carers was outlined in the paper, with the aim of supporting carers in their caring responsibilities. This package acknowledged that the way current legislation is cast prevents carers from receiving help in their own right, and included proposed new legislation to allow authorities to address carers' needs directly and more flexibly. Whilst no indication is given in the paper as to timescale for the proposed new legislation, the implications for carers are positive, and would allow:

for carers to have an assessment of their own needs, independently of whether the person they care for is being assessed;

for a local authority to give help directly to the carer, for example by providing equipment for the home which would meet the carer's needs (under s.2 CSDPA, such equipment can only be provided to meet the disabled person's needs);

for a local authority to include in packages of care, help intended directly for the carer, such as payments for taxi fares to enable them to take a break from caring for a while;

for carers to receive direct payments or credit scheme arrangements to enable them to arrange for services which support their caring role. As many people with learning disabilities are excluded from receiving direct payments because they are unable to manage them, this would allow their carers to access such funding, and to give them greater control over the services they need. There will be a key role for solicitors (and financial advisors) to play in supporting carers to make the decision as to whether to take up the option of direct payments. Issues to be considered here mirror those outlined in a previous issue of this journal, with regard to direct payments for disabled people over 65 13, and are further explored in the findings from recent research undertaken by the Joseph Rowntree Foundation 14.