The Road Ahead – Literature review

3. Changes at transition

Transition to adulthood is a time of change and includes coping with:

Changes related to the move to adult health and social services

For most young people with learning difficulties and their families, transition to adulthood also involves managing the move from children's services to those aimed at adults. Overwhelming evidence from the literature suggests that this aspect of transition is likely to be characterised by a poorly co-ordinated hand-over and reduced quality of service (Rosen, 1995; O'Sullivan, 2001; Ward et al, 2003c).

The move to adult social services is not automatic, and in most cases will involve an assessment (for all children aged 14 and over with a statement of special educational need) against the criteria of the Disabled Person's Act 1986. If, following the assessment, a young person is thought to require services from the local authority on leaving school, then a social worker is supposed to take responsibility for co-ordinating with the school and should attend transition review meetings until the young person leaves full-time education. Once a young person reaches the age of 18, their needs are assessed under the NHS and Community Care Act 1990 and a Community Care Assessment is carried out. If the person is eligible for support from the local authority under this assessment, then a Care Plan will be drawn up outlining what support is needed and how it will be provided. The disabled person or their carer should get a copy of the Care Plan and it should be reviewed regularly. If the person is not eligible for community care, the social worker should give advice about other organisations that might be able to offer support. If the person disagrees with the result of the assessment, they can appeal against it.

The explanation outlined above is a pen picture of what should happen in the transfer between children's and adult social services. The reality, as recent research has shown, is rather different. Rowland-Crosby et al (2002) have found that social workers and other social services staff are unlikely to be involved at transition, despite the duty placed upon them to play a role in transition review meetings. In their study, there was only one example of social services and Connexions working together successfully and this was where there was a transition co-ordinator in place who was working alongside the Connexions Personal Adviser. Similarly, Heslop et al (2002) found that for more than 40% of the families involved in their study, transfer to adult social services had not been dealt with at all at transition. Although a small number of families mentioned good relationships with a social worker, rather more talked about late involvement of social services, a lack of input at transition planning meetings, lack of commitment to the young person, and a lack of co-ordination between children's and adult social work teams. Other specific issues highlighted by other studies include: difficulties in accessing assessments, funding and provision of equipment (Morris, 2002; quoted in Thornton, 2003) and confusion about who pays for communication equipment with the result that many families may end up doing so themselves (Morris, 1999).

Positive examples of a successful move to adult social services appeared to be where families and young people had been supported by a nominated transition worker from social services, or where a good relationship had been developed with a committed and efficient social worker. Clearly there is a need for accurate information for families and young people about their rights to services and support from adult social work teams at transition, and about the roles played by social workers and/or transition workers and how these interlink with the roles of other key professionals. Information about making complaints and appeals may also be appropriate here, given the context of poor service delivery and failure to meet statutory responsibilities.

Regarding health services, many children with learning difficulties will see a paediatrician if they have to attend hospital for treatment. They may also see professionals from the community child health service. In most areas of the UK, the expectation is that between the ages of 16 to 18 a young person with learning difficulties will transfer to adult health specialists or be seen in an adult clinic. A range of legislation sets out the duties of health agencies to provide services during transition (Heslop et al, 2002). The Code of Practice (DfES, 2001) says that health professionals involved in the management and care of the young person should provide advice towards transition plans in writing and where possible, attend the annual review meeting in Year 9. They should advise on the services that are likely to be required and should discuss the transfer to adult health care services with the young person, their parents and their GP. They should facilitate any referrals and transfer of records, subject to informed consent and should liaise with Connexions (Ward et al, 2003c). Young people with learning difficulties at transition have also been identified as a priority group to receive a Health Action Plan (Department of Health, 2001) which should cover a young person's need for health intervention as well as health promotion.

However, despite the policy rhetoric, studies have shown that transfer arrangements to adult health services for young people with learning difficulties are not working well (Heslop et al, 2002; Ward et al, 2003c; Morris, 1999; O'Sullivan, 2001). Problems have included:

  • Poor hand over - young people and parents did not get to meet the adult team prior to the next outpatient appointment or hospital admission (Heslop et al, 2002).
  • Reduced quality of service - regular appointments were replaced with 'as you need us' approach (Heslop et al, 2002).
  • Increased likelihood that health problems were overlooked or mis-diagnosed, and continuity and consistency lost (Heslop et al, 2002).
  • Diminished therapy services (O'Sullivan, 2001).
  • Conflicting advice from paediatric and adult therapists (O'Sullivan, 2001).
  • Hospital service transitions were unco-ordinated (O'Sullivan, 2001).
  • Lack of information about how to find adult health services - no provision of written information such as a list of addresses (O'Sullivan, 2001).

Ward et al (2003c) highlighted that where hand-held records were available for families, which had information on the health of the youngster and could be taken from children's to adult service, these were highly valued and appeared to be a useful way of facilitating a smoother transition. Young people themselves say they want more information about their medical conditions, impairments and treatments at transition, but research shows that this is not always given to them or not in ways that they could use (Morris, 1999).

Two studies from the USA also make helpful suggestions about how to better prepare for the transition to adult health services. Rosen (1995) suggests that:

  • Preparations for transfer should include an introduction, preferably by the current paediatric provider to the new physician and care co-ordinator.
  • Differences in practice philosophies and style between the current paediatric setting and proposed adult setting should be discussed fully.
  • A careful transition plan, created together by patient, family, and existing and new providers, can safeguard against unexpected or abrupt changes in management.

A second North American study conducted by Geenen at al (2003) looked at the role of health care providers during the transition of adolescents with disabilities and special health care needs (including children with developmental disability and multiple disabilities). The study sought to clarify what the role of health care providers should be in assisting young people during transition, and found that the following activities were important to families:

  • Taking care of my child's general health
  • Taking care of my child's disability
  • Co-ordinating my child's health with other health professionals
  • Helping my child get health insurance
  • Helping me find a health care provider when my child becomes an adult
  • Teaching my child to manage own health
  • Working with the school to co-ordinate care
  • Discussing with my child how to take care of his or her health to be successful at work
  • Connecting my child to other services in the community
  • Screening my child for mental health problems
  • Talking to my child about drugs and alcohol
  • Talking to my child about sexual issues
  • Helping my child apply for or keep Social Security income.

The importance of a co-ordinated approach to health care transfer is vital to ensure that a young person's health needs continue to be adequately and appropriately met. A recent retrospective cohort study (Bent et al, 2002) compared outcomes for young people with physical disabilities at transition to adult health services. One group of young people were receiving unco-ordinated, ah-hoc health services. Another group were receiving a more co-ordinated YAT (young adult team) approach. YAT services involve multi-disciplinary specialist teams developed specifically to facilitate transition from childhood to adulthood services, and typically include a consultant, psychologist, therapists and a social worker. These professionals are likely to be working in most health services, but the pattern of service delivery in usually individual professionals working in isolation. This very extensive and carefully constructed study found that young disabled people who had access to YAT services were more likely than those who used ad hoc services to participate in society. It also found that both types of service cost the same amount to provide.