Living Independently

Respite/short breaks

Respite Care or Short Breaks

Having a short break or using a respite service is an important experience for many carers. It can assist in offering sufficient support for longer term care. The reality would appear to be that such services are nationally patchy and not always easy to access.

MENCAP published 'Breaking Point - A report on caring without a break for children and adults with profound or severe learning disabilities', in June 2003. It said:

• 8 out of 10 families have reached breaking point
• 6 out of 10 families are getting no short break service at all, or one that is so minimal, it does not meet their needs
• 3 out of 10 families received fewer short breaks than in the previous year
• 2 out of 3 families who are on a waiting list for short break services have been waiting for at least six months
• 8 out of 10 families have never been offered a choice of service
• 3 out of 10 do not trust the service offered to them
• 5 out of 10 have found services unsuitable

Similar sentiments were expressed by the Learning Disability Task Force (reporting to Dr. Stephen Ladyman, Secretary of State for Health), in its report, 'Rights, Independence, Choice and Inclusion', in January 2004. The report stated:

"The Task Force is worried that many people with learning disabilities and their families are still not getting short breaks and help to plan. There is an urgent need for more services to help families and people, especially those with high support needs and those from minority ethnic communities".

What are the benefits of a respite service?

The potential benefits of a respite service for a carer(s) can be the opportunity to:

• Rest
• Renew physical energies
• Psychologically recuperate
• Have their own time
• Give greater time to another family member, often a sibling
• Focus on another priority task which might be impossible otherwise (e.g. major building work or home improvement)
• Take a holiday

The potential benefits for an individual with a learning disability can be:

• A change of setting
• Experience of different relationships
• Increased notions of personal independence as a result of not always being reliant on own family/carers
• Opportunities for new experiences and activities

The term 'respite care' has been challenged by some learning disability self-advocacy groups, as it appears to be associated with a concept of 'relieving the burden of care'. When this is the consideration, the emphasis is placed more on a service being provided for the carer. It is felt this can promote a wrong and negative image for the user who has the learning disability, and does little to enhance that person's own feelings.

Whilst many carers can clearly feel the pressures of caring, they would often claim these are made greater because of a lack of general and appropriate official support services. Using a 'short break' concept encourages something of a more balanced approach to address the needs of both users.

The Joseph Rowntree Foundation researching respite services in 1996 ((Respite Services for Adults with Learning Disabilities) - Cotterill, Hayes, Sloper and Flynn) reported in their survey that there appeared to be a common desire amongst authorities to refocus their respite services away from traditional residential and hospital based facilities and introduce 'innovative' services. However, despite following this and the 'Valuing People (2001)' White Paper, the MENCAP survey of 2003 found that most potential users were still not being offered a choice of service. Moreover, half of all users found their service unsuitable.

What can a respite or short break comprise of?
The responsibility for arranging and providing 'short break' services lies with the local authority and health service, which may not necessarily provide the service or the physical provision directly. Voluntary organisations such as charities and independent providers can also provide services, but the care given will usually be financed by the statutory bodies.

'Short Break' care and support for individuals can be provided in residential homes, hospitals, health service units or substitute families. Whilst some services offer respite care to a number of people at a time - usually in a residential setting - it is more difficult to meet people's individual needs in this way. There has long been a trend to move towards shared care and person-to-person schemes. These schemes include linking individuals with support families in ordinary homes, who will provide the care or short break. The care is then delivered in the context of an 'ordinary life setting', offering the potential for fresh experiences and to form new social networks. The schemes attempt to match people's interests and personalities, and ideally keep the person near to their local neighbourhood and not isolated from their usual important routines.

The service might consist of stays varying in length from a few hours to overnight, a few days or longer. Sometimes those providing the respite/break go to the individual's own home to provide the support. The research suggests these schemes can provide the most flexible, individual and valuable service to families. As one satisfied user of such a scheme said, "It is not like going into care, it's going to stay with friends for a while".

The challenge is to provide these services to those who have specific cultural needs, complex physical needs, autistic spectrum disorders or challenging behaviour.

How do you access a service?
From the perspective of an individual with a learning disability, the provision of a service will depend on the outcome of an assessment by either staff from the local authority (Social Services Department), or NHS operating under the NHS and Community Care Act 1990. The Act places a duty on authorities to assess people for social care and provide the support they require. A mixed provision of care is promoted, with the independent, private and voluntary sectors all being encouraged to provide resources.

From a carer's perspective, the 1995 Carers' Recognition Act gives the right to have their needs taken into consideration when services are being assessed under the NHS and Community Care Act 1990 for an individual they are caring for.

However, there is no requirement to provide for carer needs as a duty and they are subject to availability of resources. The 1989 Children Act also provides provision for short-term care.

An individual's Person Centred Plan (which is likely to have been commissioned from the original community care assessment) would address any consideration of short breaks. Potential dilemmas may arise here when, perhaps, the need for a short break/respite is being implicitly driven more by the needs of the carer. By using a constructive concept of 'short breaks' however, building it around the needs, wishes and aspiration of the person who is the subject of the PCP, we can empower the argument for their provision if they are jointly supported by the findings of a formal Carers' Assessment.