TRANSITION
FOR CHILDREN WITH INTELLECTUAL DISABILITIES
Diana Andrea Barron, Jo Violet, & Angela Hassiotis
Introduction
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 familiarises 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 Defined
Transition: Getting it right for young people (Department of Health/Child
Health and Maternity Services Branch 2006) provides a useful definition
of transition:
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Transitions occur throughout life and are faced
by all young people as they progress, from childhood
through puberty and adolescence to adulthood; from immaturity
to maturity and from dependence to independence. In
addition, some young people experience extra transitions
as a result of other life events for example, bereavement,
separation of parents, and being placed in care. |
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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
opportunities, 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 (Carpenter 2002).
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
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TABLE. 1
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| TRANSITION |
DIFFERENCE |
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Leaving Home
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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.
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Managing money
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Young people with intellectual disabilities
may not have had any experience of managing their own
money.
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Legal independence
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Some individuals with intellectual disabilities
may not gain legal independence, despite reaching the
age of majority, if they do not have mental capacity.
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Independent social life
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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.
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Finding employment
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Young people with intellectual disabilities
are less likely to gain paid employment.
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Gender Specific
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. Recent changes in the UK screening programme
have meant a delay in the initial cervical smear that now doesn't
take place until the age of 25 years. 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.
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)
Parenting
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.
Transition services
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.
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OBJECTIVE 2: TRANSITION INTO ADULT LIFE
As young people with intellectual disabilities
move into adulthood, to ensure continuity of care
and support for the young person and their family,
and to provide equality of opportunity in order to
enable as many disabled young people as possible to
participate in education, training or employment.
Sub-objective 2.1
Ensuring that each Connexions partnership provides
a full service to learning disabled young people by
identifying them, deploying sufficient staff with
the right competencies and coordinating the delivery
of appropriate supports and opportunities.
Sub-objective 2.2
Ensuring effective links are in place within and between
children's and adult's services in both health and
social services.
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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.
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. 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?
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.
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Communication
which is open, honest and respectful between agencies,
and between agencies and families; independent advocacy
for young people.
Coordination
effective inter-agency working; joint training initiatives;
joint assessment procedures and a cohesive strategic
approach to service provision.
Comprehensiveness
an effective transition plan for all young people;
appropriate race and disability equality training
for all staff; expectation that young people with
learning difficulties will have access to the same
opportunities to realise their aspirations as their
peers.
Continuity
key workers to support individual youngsters and their
families throughout the transition process; a seamless
transition from children's to adult services; a range
of options for young people to move into and between.
Choice
more and better involvement of young people and their
families in the transition process; access to appropriate
information on potential options; development of a
range of local post-school alternatives in housing
and employment.
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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
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Table 2: Models of
transition explained.
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Model
|
Description
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Pros
|
Cons
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| 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.
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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. |
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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. |
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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.
Training
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.
Further reading
Getting
it right for young people: Improving the transition of young
people with long term conditions from children’s to adult health
services 2006
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
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.
National
Service Framework for Children, Young People and Maternity Services:
Complex Disability 2005
Provides an exemplar on complex disability which forms part of
the National Service Framework for Children, Young People and
Maternity Services.
Count us in 2001.
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.’
Internet resources
The Road Ahead webpage:
www.scie.org.uk/publications/tra/index.asp
Every child matters webpage
www.everychildmatters.gov.uk/
Valuing People Website
http://valuingpeople.gov.uk/index.jsp
Dipex
www.dipex.org/DesktopDefault.aspx
National service framework
www.dh.gov.uk/childrensnsf
References
Blum RW., Garrell
D., Hadgman C.H., et al, (1993)Transition
from child-centred to adult health care systems for adults
with chronic conditions . A position paper of
the Society for Adolescent Medicine. Journal
of Adolescent Health 14, 570-6.
Carpenter,
B (2002) Count us in: Report of the enquiry into meeting the mental
heath needs of young people with learning disabilities. London
Foundation for people with Learning Disability.
Department
for Education and Skills (2003) Every Child Matters, the Green
Paper.
Department
of Health (2001 a) the National Service Framework for Diabetes. HMSO London.
Department of Health (2001 b)
Valuing People: A New Strategy for Learning Disability for the
21st Century. HMSO London.
Department
of Health (2005) Complex Disability Exemplar, National Service
Framework for Children, Young People and Maternity Services. HMSO
London.
Floyd
F. J., Harter K. S. M., Costigan C. L. (2004. Family Problem-Solving
With Children Who Have Mental Retardation. American Journal
of Mental Retardation 109: 507–524.
Her
Majesty’s Stationary Office (1993), Education Act 1993 and associated
Code of Practice (DfEE 1994)
Heslopp, P., Mallett, R., Simons,
K., and Ward, L. (2002) Bridging the divide at transition. What Happens for Young People with Learning Difficulties and their
Families? British Institute of Learning Disabilities.
Kiddiminster.
Hussain. Y., Atkin, K., and Ahmad, W. (2002).
South Asian disabled young people and their families. The
Policy Press. Bristol
McConkey, R. and Smyth, M. (2003). Parental perceptions of risks with older teenagers who have severe
learning difficulties contrasted with the young peoples
views and experiences. Children and Society 17, 18-31.
National
Children’s Bureau (2005) Promoting healthy lifestyles among children
and young people? Spotlight Briefing, November.
Russell
Viner (1999) Transition from paediatric to adult care. Bridging the gaps or passing the buck? Archives of Disabilities in
Childhood 81, 271-275.
Townsley, R. (2004.) The Road Ahead? Literature review
Norah Fry Research Centre
Tucker
L.B.,Cabral D.A.(2005). Transition of the adolescent patient
with rheumatic disease: issues to consider. Pediatric Clinics of North America 52, 641-52.
White
P.H (1997). Success on the Road to Adulthood: Issues and hurdles
for adolescents with disabilities. Rheumatic Diseases Clinics
of North America 23, 697-707
Cystic
Fibrosis Trust (2001). Standards
for the clinical care of children and adults with Cystic Fibrosis
in the UK. http://www.cftrust.org.uk.
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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.
See: www.rcpsych.ac.uk/publications/bbw
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