Transition For Children With Intellectual Disabilities
This article aims to provide an overview of transition for people with intellectual disabilities as they move from children's to adult services and concludes with a brief account of how transition services may need to develop in the future.
This article aims to provide the reader with an overview of transition for people with intellectual disabilities as they move from children's to adult services.
Topics covered include common issues faced by young people as they grow up with intellectual disabilities, the legislative background of transition services in the UK, and models of transition services.
In addition to this the article familiarizes the reader with the main body of UK literature in this area.The article concludes with a brief account of how transition services may need to develop in the future.
Transition: Getting it right for young people (Department of Health/Child Health and Maternity Services Branch 2006) provides a useful definition of transition:
Times of transition bring with them various other opportunities including the opportunity to reflect on and be proud of achievements, to be hopeful for the future and possibly to 'jettison attributes we no longer want' (National Children's Bureau 2005).
Transition can be seen to affect an individual's status, family life and other aspects of their lives as illustrated in figure 1.
Transition services and guidelines for good practice exist for various chronic conditions affecting children such as Cystic fibrosis (Cystic Fibrosis Trust 2001) Diabetes (Department of Health 2001a) and physical disabilities (Department of Health 2006). All of these emphasise the need for specifically designed programmes of care for facilitating the smooth transition from paediatric to adult care.
Transition specific to young people with intellectual disabilities
The nature of disability
Individuals with intellectual disabilities represent a heterogeneous group of people with a large array of abilities and diagnoses. This diversity arises as a marker of the severity of the intellectual disabilities which can be divided into mild, moderate, severe and profound. It is likely that an individual with more severe intellectual disabilities will encounter more barriers to accessing the same opportunities that are available to their peers without severe intellectual disabilities. In addition to this, individuals with intellectual disabilities are also more likely to have coexistent medical conditions than individuals' without intellectual disabilities. There is an increased likelihood that individuals will have received a diagnosis of chronic illness such as epilepsy or mental health diagnoses. For example four out of ten young people with intellectual disabilities experience mental health problems during their adolescence (Vedi &Bernhard 2012). Comorbidity with intellectual disabilities could be (a) coincidental, (b) one condition leading to the other or (c) impairment leading to both the intellectual disability and the comorbid disorder. Conditions may also be overlapping with no links to their cause.
However, these additional difficulties are often not recognized until they get severe or not at all. ‘Diagnostic overshadowing’ is the tendency for clinicians/ professionals working with the young person to attribute symptoms or behaviours to their underlying cognitive deficits and to therefore underdiagnose the presence of comorbid psychopathology. It is highly important that there is accurate and complete diagnosis of comorbid psychiatric disorders as these can cause significant clinical impairment and the additional burden of illness on both the individual and their families. Furthermore, the placement of the child or the adult in educational or community settings respectively can be jeopardized by these difficulties particularly during transition to adult services.
For young people with intellectual disabilities their experience of transition can be qualitatively quite different from that experienced by other people. People with intellectual disabilities are more likely to experience additional transitions in their lifetime such as the diagnosis of co-existent medical conditions. For example, epilepsy is eight times more common in individuals with mild intellectual disabilities than it is in the general population. This rises to 100 times more common in severe intellectual disabilities. People with intellectual disabilities are also more likely to be subject to adverse life experiences.
'The Road Ahead' (2004) project was commissioned by the Social Care Institute for Excellence to explore the information needs of young people with intellectual disabilities, their parents and supporters during their transition from childhood to adult services. The project consisted of:
- Focus group interviews with 27 young people, 19 of their parents and 19 of their supporters in 4 different areas of England and Wales,
- A systematic review of the literature on transition,
- A review of the information resources already available for young people, parents and professionals, including an evaluation of materials by young people and parents.
The literature review took an in-depth look at transition experiences of young people with intellectual disabilities and their families and identified many aspects of transition that may be different for this group of people. Table 1 (below) aims to summarise some of these differences
This may occur later in the life of someone with intellectual disabilities. Alternatively it may occur much earlier, with an increased likelihood of children with intellectual disabilities going into care or specialist units.
Young people with intellectual disabilities may not have had any experience of managing their own money.
Some individuals with intellectual disabilities may not gain legal independence, despite reaching the age of majority, if they do not have mental capacity.
Independent social life
People with intellectual disabilities face some barriers to establishing independent social lives, such as lack of access to transport or communication technology, adult surveillance, and lack of access to a peer group.
Young people with intellectual disabilities are less likely to gain paid employment.
Transition usually coincides with the development of sexual maturity. For women this includes the onset of menstruation, the ability to bear children and the participation in the nationwide public health screening programmes such as that for cervical screening. The uptake of screening programmes by young women with intellectual disabilities has been shown to be reduced when compared with other groups of young women. There is a lack of resources for individuals with intellectual disabilities and their carers to access advice about body changes and maturation during the transition to adulthood.
Minority ethnic groups
Young people with intellectual disabilities who also belong to minority ethnic groups may experience additional differences in their transition. Some of these may arise from cultural differences. An example of this described in the literature is the time at which an individual will leave the family home which generally is later in some ethnic groups than for their White-UK peers (Hussain et al 2002) and often accompanies other transitions such as marriage.
Risks and Safety
Individuals take risks every day. An individual's perception of risk varies according to their abilities, understanding and own life experience. Perception of risk in turn has a large influence on risk taking behaviour.
In the context of young people with intellectual disabilities there may not have been adequate opportunity to develop the necessary skills required to minimise risk. This is the case with most young people who, because of their youth, are more likely to lack a lot of the life experiences that may relate to risk taking behaviour such as first sexual encounters.
Risks may relate to everyday activities, lifestyle choices or abuse at the hands of others.
Examples of the risks that are an inherent part of daily living include many things from shaving to travelling alone on public transport. Lifestyle choices, such as exercise and diet, pose the potential risk of developing health problems in the longer term.
With regard to abuse, it is an unfortunate reality that people with intellectual disabilities remain at increased risk of abuse at the hands of others. This may take many forms; the most common reported by people with intellectual disabilities in one study is that of bullying and verbal abuse at the hands of their peers (McConkey and Smyth 2003). The experience of being bullied in turn leads to lowered self esteem and its consequences such as low mood.
Transition marks a time where an individual gains greater choice and autonomy as they become independent. This can be a source of great anxiety for parents and carers when deciding how best to manage risk in the future. There is a marked discrepancy between the risk perceived by young people with intellectual disabilities and that perceived by their carers/parents (Townsley 2004). It is important to adopt an appropriate strategy to reduce risk for individuals in a way that does not restrict the individual's autonomy or access to opportunities that are available to their peers. A large part of the process is to provide the relevant life skills training during the transition period.
Parents are also in a stage of transition as their child enters young adult life. There are major changes and challenges for parents as they adapt their role and promote their child’s growing independence and life choices. It can be difficult to find a good balance between the duty of a parent to protect their child and the own rights of young adults. Parents are usually very involved in child and adolescent mental health services however parents generally tend to be less involved in adult mental health services. This can be complicated for young people with intellectual disabilities as parents can have a much greater role in protecting their child from risks from others including exploitation or manipulation due to their vulnerability.
It is important to be mindful of the institutional processes that may expose individuals to further risks, in particular health risks. Young people with intellectual disabilities often receive a poor quality of service such as the replacement of regular follow-up appointments with as-required appointment systems. They are also more likely to have their health problems either misdiagnosed or overlooked (Heslopp et al. 2002).
Identity and emotional wellbeing
The period of transition from adolescence into young adult life is a time when experiences of disability can have an impact on the construction of self-identity. In a study in Belfast about ‘Disability, Identity and Transitions to Young Adult Life’ aimed to explore the transitional and early adult life experiences of young learning disabled adults, young people’s perceptions of disability, impairment and self-identity were shown to be often related to post-school experiences and use of services. Enabling attitudes and approaches from family members, peers and professionals can help to buffer disabling experiences and support young people to develop positive self-esteem. However, lack of access to information about impairment and disability rights, inappropriate post-school placements and limited opportunities for peer support can have a negative impact on the emotional wellbeing of disabled young people and those with intellectual disabilities. Many of the people in the study raised issues relating to low self-esteem and depression or anxiety often linked to experiences of disability, social exclusion and familial issues. However, few had the opportunity to address their emotional needs in a safe and supportive context. It is important to adequately address the emotional wellbeing of disabled young people and recommendations that were made in the Belfast study included:
a) Targeted public health services aimed at promoting the emotional wellbeing of disabled young people
b) Inclusion of identity-related needs and emotional wellbeing in health and social care services, including opportunities to explore experiences of impairment and disability. Social workers could play a greater role in meeting these needs of disabled young people in transition as part of their key worker role
c) Opportunities in schools and further education, training and employment programmes to address issues of self-confidence, identity and self-esteem
d) Recognition of the impact of discrimination and abuse on the emotional wellbeing of young disabled people in transition and provision of therapeutic services to address related needs
e) Peer support and advocacy for young disabled people to challenge disabling encounters and assert their rights in varying contexts
f) Increased opportunities for affirmation and participation to build the resilience and capacity of young disabled people to exercise their rights and make a valued contribution to society
Parents and carers of children with intellectual disabilities may have experienced difficulties in setting boundaries which may impact upon family cohesion (Floyd et al 2004) particularly during adolescence. Parents may need support setting boundaries as well as learning about the additional processes that their children will undergo during transition. There is also a need to acknowledge and provide for the healthcare needs of parents and carers that may arise at this time.
The need for specifically designed programmes of care for facilitating the smooth transition from paediatric to adult care has been identified internationally, nationally and locally.
Transition is a multifaceted process, which includes the event of transfer and attends to the medical, psychosocial and educational/vocational needs of such young people and the needs of their parents.
UK legislative background
The Education Act 1993
The official duty to undertake transition planning was set out in the Education Act 1993 and associated Code of Practice (Department for Education and Employment 1994), revised and updated (Department for Education and Employment 2001). According to the code of practice, health professionals involved in the care of a young person have several responsibilities at the time of the young person's transition including:
- The provision of written advice about transition plans including details about the services likely to be needed by the young person when they leave children's services.
- Discussion of the transfer to adult services with the young person, their family and their GP.
- The facilitation of any necessary referrals arising from the transition process and transfer of Connexions workers (see the Valuing People paragraph below).
- If possible to attend one of the individual's annual review meetings from Year 9 onwards.
Valuing People (Department of Health, 2001 b)
Valuing People sets out eleven objectives for how the UK Government intends to improve life for people with intellectual disabilities. The second objective places transition high on the agenda.
The White Paper, Valuing People, highlights the importance of agencies working towards achieving an integrated approach for supporting children with intellectual disabilities and achieving a smooth transition from children's to adult services and made various changes to support this objective. For example:
- The nationwide provision of a new 'Connexions' Service to provide all 13 to 19-year-olds with access to advice, guidance and support, via a network of personal advisers. These advisers will identify young people with intellectual disabilities and attend annual reviews of all Year 9 pupils with statements of Special Education Needs. Their role is to work with the schools and other relevant agencies to draw up the transition plans.
- The appointment of 'Champions for transition from children's to adult's services and for employment'.
- The creation of Partnership Boards whose role is to oversee and advise on implementation of adult aspects of Valuing People. They should establish links with Children and Young Person Plans, quality Projects Management Action Plans and Connexions partnerships in order to promote seamless transition for young people with intellectual disabilities between children's and adult's services.
- Local agencies will have been expected to introduce person-centred planning by the year 2003 to aid in gaining a lifelong perspective so that transitions can be less traumatic for people with intellectual disabilities
There is now a statutory requirement in England and Wales to plan properly for transition originally set out in The Learning and Skills Act (2000) (now contained in the Education and Skills Act 2008 section 139) which required Connexions Services to undertake an assessment of any young person with learning difficulties and disabilities in the final year of compulsory schooling or when leaving sixth form provision.
Problems with current transition services
Despite the existence of legislative guidance about transition in the UK there continues to be marked variation in the transition arrangements available to young people. This is reflected in the paper Models of Multi-agency Services for Transition to Adult Services for Disabled Young People and Those with Complex Health Needs: Impact and costs (2010) where five different approaches to transition were reported and outcomes were described and appraised. In 'Bridging the Divide at Transition: What happens for young people with learning difficulties and their families', (2002), the Home Farm Trust and the Norah Fry Research Centre aimed to ascertain the level of compliance with legislation and guidance regarding transition for young people with intellectual disabilities (i.e. Valuing People and the Education Act 1993 and associated Code of Practice). It consisted of a questionnaire of 283 families and in depth interviews of 27 young people and 27 parent carers in England. Its findings included the following:
- A fifth of youngsters had left school without a transition plan
- Almost half the young people had little or no involvement in the planning for their future
- Lack of planning led to uncertainty and stress for some families
- The quality of transition planning varied widely; in some cases it was ad hoc, confused and uncoordinated
- The topics covered in transition planning were often quite different from those identified as important by families
- For many young people, key issues (e.g. transfer to adult health or social services) had still not been addressed by the time they left school
- Whether or not youngsters had received transition planning made little difference to what happened to them after leaving school
- There were few post-school options available to young people particularly in relation to housing and employment
- There was a lack of easily accessible information for parents and young people about what future possibilities might be
- Concerns raised by the young people and their families which inhibited greater independence focused on personal safety and risk, money matters (including benefits) and Transport
What makes transition successful?
Unfortunately, there has not been any specific research on how service users with intellectual disabilities or their carers experience transition. However, there is research on transition in the mainstream service. A study into the process, outcome and user and carer experience of transition from child to adult mental healthcare, as part of the TRACK study, was carried out by Swaran Singh et al. in 2010. Here, they identified and followed up a cohort of service users crossing the CAMHS (Child and Adolescent Mental Health Services)/AMS (Adult Mental Health Services) boundary over one year across six mental health trusts in England. They determined predictors of optimal transition and conducted qualitative interviews with a subsample of service users, their carers and clinicians on how transition was experienced.
Transition pathways were categorized as optimal when they included:
a) good information transfer across teams (information continuity)
b) a period of parallel care/joint working between teams (relational continuity)
c) adequate transition planning (cross-boundary and team continuity)
d) continuity of care following transition (long-term continuity).
Sub-optimal transitions were considered those that failed to meet one of the above criteria.
Of the 154 participants who crossed the transition boundary, 58% were accepted by AMHS (i.e. actual referrals) and 42% were either not referred to AMHS or not accepted by AMHS (i.e. potential referrals). It was found that individuals with a history of severe mental illness, on medication or having been admitted to hospital were more likely to make the transition than those with neurodevelopmental disorders, emotional/neurotic disorders and emerging personality disorder. Unfortunately, only four individuals (less than 5% of those who made the transition) experienced optimal transition. However, most individuals who did transition stayed engaged with CAMHS and reported improvement in their mental health.
Clearly transition continues to be a problematic area both from the service provider and service users' perspectives.
Key elements for an effective transition from a service delivery perspective were set out by Viner (Viner 1999). These were:
- A policy on timing transfer.
While there is a need for flexibility with regard to the time at which a young person should be transferred into adult services, it is useful to have a target transfer age. This is helpful not only for the commissioning of services but also for the young person themselves to be able to have reasonable expectations with regard to the process of transition. The target age may be chronological or based upon other transitional events, possibly leaving full time education.
- A preparation period and education programme on identification of a necessary skill set to enable the young person to function in the adult clinic.
Clearly young people should not be transferred to adult services if they do not have the ability to function within an adult setting. For this reason it is necessary for preparation work to be undertaken. In the context of some physical disabilities, this might include their ability to manage their own physical ailments e.g. by being able to take responsibility for their own medications.
- Coordinated transfer process.
This would require clearly identified professionals who can identify the various strands of a young person's health and social needs and co-ordinate their access to the appropriate adult facilities. This may include introducing them to the clinicians/professionals concerned.
- An interested and capable adult service.
This is a key part of the transition process and requires active participation from the adult services for the transition to be successful
- Administrative support.
Institutional and management support must be assured at both ends of the transition chain. Informal arrangements, though quick and easy to set up in the short term, are often prone to failure
- Primary care involvement.
Additional elements include:
Case ascertainment: A large majority of young people with intellectual disabilities are identified during their childhood via the education systems. However a minority of cases may not be identified by the usual means.
Ongoing evaluation of transition arrangements: transition services need to review their practices regularly in order to be sensitive to the changing needs of the population of young people with intellectual disabilities and adapt their services regularly.
"Bridging the Divide at Transition" (Heslopp et al 2002) identified elements that contribute to a good transition experience as perceived by young people with intellectual disabilities and their carers.
Several young people with intellectual disabilities can fall through the gap during the transition of care from child and adolescent mental health services to adult learning disability services when they don’t meet the criteria for adult learning disability services. Such young people could potentially be seen by IAPT (Improving Access to Psychological Therapies, a programme which was created to offer patients a realistic and routine first-line treatment, combined where appropriate with medication) or by primary care, however, young people with intellectual disabilities have chronic difficulties and often find it hard to access care and need help with accessing services. Mental health services would incorporate such help to access services, unlike IAPT or primary care. Those with mild intellectual disabilities, neurodevelopmental disorders including autism spectrum disorders, emotional or neurotic disorders or emerging personality disorder are more likely to fall through the gap. Where services exist, all young people with ongoing needs should be referred. However, where services do not exist, unmet service user needs should be clearly documented and raised with the AMHS providers and commissioners. Difficulties can arise from the different commissioning arrangements of CAMHS and AMHS, where CAMHS are often commissioned by acute care or children’s services, whereas AMHS is within mental health commissioning. There are problems with the structuring of services and there is huge variation according to geographic area. CAMHS services are historically more comprehensive in offering services with less specific inclusion criteria, whereas adult services usually have more clear-cut criteria and IAPT has specific therapeutic approaches.
Models of transition
The most favoured model of transition service adopted by most of the literature mentioned so far is that of a 'seamless transition service'. It is important to note at this stage that other transition models also exist.
The Department of Health's good practice guide 'Transition: getting it right for young people (2006) states that the most prevalent model for transition services is 'Transfer', whereby children's care is transferred to the most appropriate adult service when they come of age. The document also provides brief descriptions of some of the other models that have been described in the literature
- A dedicated follow-up service
- A seamless clinic
- Lifelong follow-up within the paediatric setting
- A generic transition team within a children's hospital
- Generic transition co-ordinators for larger geographical areas
Those models are explained in Table 2
Table 2: Models of transition explained.
|Dedicated follow-up service||Service provided within the adult setting without a combined paediatric-adult clinic and with no direct input or continuity from paediatric services.||Simplest model.||Requires nurse specialists to help young people attend adult clinics and arrange meetings with paediatric services. Lacks continuity.|
|Seamless clinic||A clinic which begins in childhood or adolescence and continues into adulthood, with both child and adult professionals providing ongoing care as appropriate. Duration of Joint Care can vary from individual to individual.||Allows access to experts in both paediatric and appropriate adult specialties. Enables professionals to learn from one another. Allows some continuity of care.||Requires resources including additional admin and clinic time. Geographical constraints may limit the availability of such a service.|
|Lifelong follow-up within the paediatric setting||The default model often adopted by disability services, for example with cerebral palsy, Duchenne musculardystrophy or Down’s Syndrome.||Ensures continuity of care.||May encounter difficulties gaining expertise in more traditionally adult issues such as vocational, employment, benefits, independent living skills, contraception.|
|Generic transition team within a children’s hospital||It involves having 1-2 dedicated nurse specialists who can ensure that all young people in the different specialities go through appropriate transitions.||Requires nurse specialistsvery sensitive to population demands.|
|Generic transition co-ordinators for larger geographical areas||Developed by the Department of Health in New South Wales, Australia, to cover a wider area. This model may be appropriate for conditions which are relatively rare, or for co-ordinating links between Children’s Hospitals and local General Hospitals.||Good approach where large geographical areas need to be covered or where a condition is relatively rare.|
The current position in the UK
The service model for transition for young people with intellectual disabilities in the UK varies. Generally the appointment of 'transition champions' in each service provide a common reference point nationwide. However, how the service is structured beyond that is variable and may arise according to the availability of expertise locally. Other factors include the accessibility of services geographically and discrepancies in definition. For example, the age an individual can access adult health services may be 16 whereas the age they can access adult social care services may be 18.
The Authors' local service model is based on liaison between CAMHS (Child and Adolescent Mental Health Services) (special needs) and Adult intellectual disability services. Other regions have appointed dually accredited Psychiatrists (Intellectual Disability and Child Psychiatry) with a specific role in CAMHS services for children and adolescents with intellectual disabilities.
The Future Service Development
Services need to consider how to develop in order to best meet the needs of young people with intellectual disabilities as they make the transition into adulthood. Collaboration between CAMHS (Child and Adolescent Mental Health Services) and adult intellectual disability services is a central part of development of services in addition to other agencies such as Education and Social Care.
One approach to promoting such collaboration is the increased provision of joint working opportunities between CAMHS and adult intellectual disability services, for example joint CPA (Care Programme Approach) meetings where mental health needs have been identified.
There is a need for better education for staff in both adult intellectual disability services and in Child and Adolescent Mental Health Services who are working with adolescents with intellectual disabilities at the time of transition into adult services.
Staff training could aim to improve familiarity with and knowledge of the physiological and legal changes associated with becoming an adult that are described above. In addition to these, training should also aim to provide staff with familiarity with the other agencies that are involved in the care of a young person with intellectual disabilities.
Integrated working arrangements
In particular some attention needs to be directed toward differences in service structures and philosophy with a view to informing each other's practice. For example 'Person Centred Thinking' (Department of Health 2001 (b)) in adult intellectual disability services and 'The Team Around the Child' (Department for Education and Skills, 2003) in CAMHS (Child and Adolescent Mental Health Services). Both of these approaches acknowledge that flexibility is essential in order to meet the needs of an individual and can be used in parallel to optimize the transition experience for young people with intellectual disabilities.
Other more pragmatic considerations relate to the need for closer geographical citing of services.
Multi-agency Models of Multi-agency Services for Transition to Adult Services for Disabled Young People and Those with Complex Health Needs: Impact and costs (Social Policy Research Unit, University of York 2010)
This document prepared by the Social Policy Research Unit, University of York in 2010, investigates the implementation of multi-agency coordinated transition services for disabled young people and those with complex health needs and their families:
A Transition Guide for All Services (2007) This document was prepared by The Department for Children, Schools and Families and Department of Health in collaboration with the Council for Disabled Children (CDC). It highlights the responsibilities of all agencies, provides an overview of legislation and guidance and provides examples of practice
Making us count: Identifying and improving mental health support for young people with learning disabilities (2005) This reports on the issues of mental health needs as understood by young people with intellectual disabilities and goes on to present this groups views about the gaps in services, what they find helpful and what kinds of support they would like to be available
Getting it right for young people: Improving the transition of young
people with long term conditions from children’s to adult health services 2006http://webarchive.nationalarchives.gov.uk/20130107105354/http:/www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4132145
This Good Practice Guide aims to show that the handover from children's and young people's services to adult services should be planned and managed as a process. The Guide suggests how this can best be accomplished in the context of the evidence base.
Every child matters: Change for children 2004 http://webarchive.nationalarchives.gov.uk/20130401151715/https://www.education.gov.uk/publications/standard/publicationDetail/Page1/DfES/1081/2004
In 2003, the Government published a green paper called Every Child Matters. This was published alongside the formal response to the report into the death of Victoria Climbié.
Provides an exemplar on complex disability which forms part of the National Service Framework for Children, Young People and Maternity Services.
Focuses on mainstream services for management and clear protocols for referral between services, increased awareness of mental health problems and development of interventions to improve communication with carers and service users.
Family Matters (Counting Families In) Department of Health, England and Wales 2001.
Commissioned following the Carers and Disabled Children Act (2000), to help develop a comprehensive intellectual disabilities’ strategy. Also highlights the importance of supporting families of a young person going through the transition process from children’s to adult services and suggests that more should be available in terms of training and support of carers, possibly ‘Through a rolling programme of workshops for parents and carers, including transitional planning from children’s to adult service and supporting older family carers.’
The Transition Information Network
The Road Ahead webpage:
Every child matters webpage
Valuing People Website
National service framework
The authors would like to acknowledge Dr Jo Violet who contributed to the earlier version of this article first published online in 2007.
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The pictures are by Beth Webb from When Dad Died and Jenny Speaks Out; Lisa Kopper from Getting on with Epilepsy and Speaking Up for Myself; Catherine Brighton from Susan's Growing Up. All these titles are published in the Books Beyond Words series.
This article was first published on this website in 2007. It was revised and updated in 2014.