British Journal of Medical Psychology (2001), 74, 151–166 Printed in Great Britain 151

q 2001 The British Psychological Society

Severe intellectual disability and transition to

adulthood
Jennifer Clegg*, Charlotte Sheard and Joe Cahill
University of Nottingham, UK

Lisa Osbeck
State University of West Georgia, USA

Institutionaland psychologicalaspects of transition were explored with parents and staff

involved with Žve young adults with severe intellectual disability whose challenging
behaviour diminished after they made the transition, and Žve whose challenging
behaviour remained high. They were selected from a previously surveyed cohort.
Grounded theory analysis of interviews suggested little connection between the
perspectives of parents and staff. The impact these differences have on communication
about challengingbehaviour was explored, and recommendationsfor service changes are
made.

Improving the way that people with intellectual disability make the transition to
adulthood and adult services is a topic of growing concern in Britain, the USA and
Australia. Research within the culture of children’s services emphasizes parental
empowerment and involvement (Dunst, Trivette, & Deal, 1994); it identiŽes high
levels of carer stress during transition which no amount of information could alleviate
(Hanley-Maxwell, Whitney-Thomas, & Pogoloff, 1995). By contrast, research carried out
within the culture of adult services follows normalization, expecting the move to mark a
transition out of childhood even for the most profoundly disabled person. Parents are
generally excluded from the purview of such research. For example, Ward and Thompson
(1997) identify factors which mark successful transitions to adulthood in people with
disabilities : employment, independent living, economic self-sufŽciency, uptake of
post-secondary education, adult role-taking, and social participation.
Policy studies suggest reasons for the exclusion of parents in adult research. Twigg
(1992) identiŽed a distinct intellectual disability view of carers held by British service
providers: carers were perceived neither as resources, co-workers, nor co-clients (models
predominating with other client groups) but as ‘superseded’. Staff treat the ‘superseded
carer’ as if they should not be present and soon will not be, even though more than 50%
of all adults with an intellectual disability continue to live with their parents (O’Hara &
Sperlinger, 1997). Twigg concludes that staff in intellectual disability services aim ‘‘not
to ease the lot of carers, but to free disabled people from relationships of dependence with

* Requests for reprints should be addressed to Dr Jennifer Clegg, Ageing and Disability Research Unit, B Floor, University
Hospital, Nottingham, NG7 2UH, UK (e-mail: Jennifer.Clegg@nottingham.ac.uk).
152 Jennifer Clegg et al.
their carers’’ (1992, pp. 64–65). Blacher, Baker, and FeinŽeld (1999) consider it ironic
that placing children into residential care is almost impossible, but the moment their
child enters adulthood, parents are suddenly exhorted to ‘let go’.
If the origin of research in either a child or an adult service perspective introduces one
dimension of difference, another should be level of disability. However, this is often
glossed over. Ward and Thompson (1997) apparently describe the experiences of young
adults with all types and levels of disability, but only 2 of the 50 participants in their
interview study had severe intellectual disability (approximate IQ < 50). Mitchell’s
(1999) interview study of transition was with a sample of college attenders, so this is
also likely to be relevant primarily to people with mild disability (approximate IQ 50–
70). Problems caused by using such studies to inform transition for people with all levels
of disability were evident in Hanley-Maxwell et al.’s (1995) research, where parents felt
staff suggestions were wildly unrealistic.
Whose transition, and what sort of transition, is the third difference between studies.
Moving from school to adult services is not a psychological but an institutional transition
that occurs within various policy contexts. In the USA, transition management is actively
promoted for all students (Furney, Hasazi, & Destefano 1997); it focuses on building
collaborative structures at the most senior levels to promote change. Riches (1996)
describes similar Australian transition initiatives as having moved well beyond the school
to employment model, becoming a powerful process for creating systemic change. By
contrast, transition specialists for children with disabilities in the UK (Disabled Persons
Act, 1986) can ameliorate individual problems but lack the policy umbrella to change
systems.
Psychological transition for the young person has attracted little research. Zetlin and
Turner’s (1985) retrospective study of adolescence found that only a third of the young
adults studied had achieved emotional autonomy. Others remained emotionally
dependent on parents despite living independently, or had conict-ridden relationships
with parents and support staff. Baker (1991) suggests such failed development is due to
an ‘unwitting conspiracy’ on the part of parents and professionals to thwart the
accomplishment of autonomy and independence. Simpson (1998) cogently argues that
it is not that simple. For him, concepts of normalization and autonomy are riven with
tension: people cannot be included in mainstream society until the special help they need
is guaranteed, and until society ceases to regard that special help as stigmatizing.
A psychological transition occurs for parents too. Todd and Shearn (1996) depict the
realization of a profoundly limited future for themselves and their child that dawns on
many parents at this time. Saetersdal (1997) revisits the issue of suffering in severe
intellectual disability : ignoring it avoids acknowledging an essential existential
dimension in the lives of parents and child. Hanley-Maxwell et al. (1995) place the
transition to adulthood alongside the moment of diagnosis for parents, dubbing this
transition ‘the second shock’. They argue for a gradual transition so that strong bonds
with school staff can unravel at a pace which allows parents to adjust.
Together, these studies suggest that transition is a complex event requiring each family
member both to manage the institutional change and to process its psychological impact.
Hubert’s (1991) anthropological study found challenging behaviour and severe
intellectual disability combined to make it even more difŽcult. There was often no
appropriate day placement; both the move into relatively unsuitable placements and their
 SLD and transition 153
psychological experiences were abrupt. The young people were given no access to toys but
were left to do nothing. Similarly, staff seemed to have no idea how to relate to them once
they had been deŽned as adults, so they slipped into a social limbo. Hubert concluded
that these young people got the roughest deal from transition services.
Thus contemporary transition research is biased towards people with mild intellectual
disability, generally describes an institutional rather than a psychological transition, and
is over-concerned with employment and autonomy. Challenging behaviour creates
additional problems. This study examines the impact of these issues in severe intellectual
disability by bringing the views of parents into conjunction with those of adult service
staff.

Aims
1. To construct a conceptual model of the way people with severe intellectual disability
make the transition from child to adult services, from the perspective of the key
people on whom they depend.
2. To describe how challenging behaviour affects communication between carers and
staff in adult services.

Method

Previous research
A 1989 whole-school survey of challenging behaviour was repeated in 1993 (Cromby et al., 1994). By 1997,
85 of those surveyed in 1989 had left school, all of whose carers were approached for a further survey. For the
54 who consented, both the carers of cohort children who had left school and the day staff now working with
them were sent a revised survey. The original survey asked about 32 problem behaviours. This was revised to
include questions associated with the onset of puberty and to exclude items with low response rates1. The
1997 survey contained 24 questions of which 19 were the same as or comparable to the previous surveys.
Completed survey returns were received from both home and main day placement for 43 people.

Participants
Since both colleges and day centres call them ‘students’that term is used throughout. From the 43 full sets of
survey returns, 7 people with no challenging behaviour at any time were excluded from further study. A
sample of 10 were selected from the remaining 36 on the following criteria. Group I comprised all Žve people
whose challenging behaviours had disappeared (3) or signiŽcantly reduced (2) during the study period.
Group II comprised Žve people with both high and enduring levels of challenging behaviour. There were
seven potential contenders for Group II: participants were selected to make the groups as comparable as
possible, using communication skills as a proxy for ability and access to a car as a proxy for household
resources. Table 1 summarizes the characteristicsof group members, giving the number of problems reported
by both home and placement from each survey period. About 10% of the city’s population come from ethnic
minority groups (Rees & Philips, 1995); the parents of one sample member had moved to Britain from the
Indian subcontinent prior to his birth.

Researchers
These were an academic clinical psychologist; a research psychologist who had studied the original 1989

1
Contact the Žrst author for details.
154 Jennifer Clegg et al.
Table 1. Characteristics of sample clients
1989 1993 1997
Gender Age Placement Abilitya Carb prob.sc prob.s prob.sd
Gp I
M 20 College 7 N School 4 School 7 Day 0
Home 3 Home 0 Home 0
M 25 Centre 6 Y School 7 N/A Day 1
Home 4 N/A Home 0
F 24 Centre 2 Y School 3 N/A Day 0
Home 7 N/A Home 0
F 24 Centre 5 Y School 3 N/A Day 0
Home 7 N/A Home 2
F 21 College 6 Y N/A School 7 Day 0
N/A Home 0 Home 0
Gp II
F 20 Day 1 N School 4 School 9 Day 5
Hospital N/A Home 3 Home 8
M 23 Day 6 Y School 7 N/A Day 6
Hospital Home 3 N/A Home 3
M 22 Centre 6 N School 3 School 8 Day 11
Home 1 Home 6 Home 7
M 23 Centre 5 N School 9 N/A Day 6
Home 1 N/A Home 0
M 22 Centre 2 Y School 4 School 5 Day 3
Home 2 Home 0 Home 1
a
Placement rating of communication skill, 7 = high, 1 = low.
b
Regular access.
c
Of a possible 32.
d
Of a possible 24.

cohort; and a research assistant experienced in intellectual disability, training to become a counsellor. All
interviews were carried out and transcribed by this research assistant using Potter and Wetherall’s (1987)
coding conventions;analysis was carried out independentlythen negotiated during team meetings chaired by
the Žrst author. The study was audited by a local clinical psychologist with intellectual disability experience,
managed but not supervised by the Žrst author.
Initial assumptions were that a naturally occurring change in difŽcult behaviour at the transition could be
used to inform interventions, since these seem more likely to endure. The study was part of a 3-year project
jointly funded by NHS and Social Services to reduce challenging behaviour. The school which cohort
members had left was one of two in a major British city (600 000 population),located in an area of signiŽcant
social deprivation. Students left to attend either two different social services day centres, a day project
managed by a parent–professional cooperative, three different adult education colleges providing sheltered
classes, or were admitted to a specialist hospital day centre. All these placements were represented in the
study.

Procedure
Ethical committee consent was obtained from the university hospital. All carers approached agreed to their
relative’s participation in the study, and to themselves being interviewed. One subsequently withdrew from
interview, but did not withdraw the person from the study. There were thus nine carer interviews, all of
which were with parents. Five students had sufŽcient communication skills to participate,but parents vetoed
interviews for three on the grounds of difŽcult behaviour. Thus two men from Group I were interviewed. All
10 day-placement staff approached took part and 21 interviews were completed and transcribed during a 6-
month period; where possible, interviews with and about individuals were held within 6 weeks of each other.
 SLD and transition 155
Though open-ended, most lasted 1–1.5 hours. A few staff interviews were shorter, while two with parents
lasted over 3 hours. Geographical convenience, not group membership, determined interview order.
Grounded theory method seeks to identify the key problems people experience as they face a particular
issue, and so the semi-structured interview is anathema. The interviewer introduced some areas the research
team thought may be of interest, but emphasized that his purpose was to ‘‘get your opinions about the way X
has developed and changed since s/he left school, and your experiences along the way’’. Early interviews
merely enquired what the change from school was like for X and for the interviewee, how the person or people
around them responded to their growing sexuality, and how things were now, amplifying any themes raised
by respondents.
Coding was based on meaning units using a hermeneutic perspective (Rennie 1998; Strauss, 1987),
supported but not dictated by QSR Nud*ist (1997). Open coding is intended to identify categories and
concepts by which the experiences of interviewees can be represented theoretically.Categories were integrated
on three occasions to enable the interviewer to obtain sufŽcient detail from later interviews to saturate
categories and elaborate transition processes. Examples of speciŽc questions developed in response to material
from early interviews were ‘‘What kind of contact is there between placement and home, and are you happy
with this?’’ and ‘‘Some families have told us of very mixed feelings about their child becoming independent.
Do you have any thoughts on this?’’. After coding was completed and accounts constructed by identifying a
core concept to which all other categories related for each set of informants, the last author spent two days
pursuing an audit trail through records (see Appendix). Results were discussed with participants. They
were also debated with senior policy-makers during a workshop which generated implications for service
change.

Results
Participants are referred to by pseudonyms that retain gender; hesitations and transcript
notations have been removed from quotations for brevity. Results primarily come from
parents and staff, since the two students interviewed did not represent their sample and
limited recall meant they contributed little to the grounded theory account of transition.
Their interviews did contribute to the content analysis of maturation which elaborated
psychological transition.

A grounded theory model of transition

A model of transition triangulating staff and parent views eluded our grasp, because there
was so little overlap between their views. Moreover, the major issue underlying analysis
was not presence and absence of challenging behaviour, as had been expected : this was a
pertinent dimension, but differences between staff and parent perspectives were more
germane to the material. Our Žnal model of transition from the parents’ perspective
(Fig. 1) is contrasted with the way staff consider it (Fig. 2). It encapsulates the major
categories developed from interviews and their main dimensions. Information summar-
ized in the two Figures does not encompass the 20% who never had problems, but
bounds the remaining four-Žfths of participants whose problems had reduced to minimal
levels (Group I) or remained high (Group II) following transition.
The core concept for parents was being a ‘reluctant referee’. This entails feeling
compelled to make important decisions without sufŽcient information, knowledge, or
the urging for independence that comes from non-disabled young people. Different
parents said, ‘‘You’ve got to sort it out’’, ‘‘You’ve got to give him a chance to prove
himself’’. ‘Got’ suggests that the transition feels onerous and the carer reluctant;
occasionally these fears were justiŽed. One young man cried and complained of loneliness
 156
Jennifer Clegg et al.

Figure 1. Parent perspectives on transition.

 SLD and transition

Figure 2. Placement perspectives on transition.

157
158 Jennifer Clegg et al.
for a year after he left school, while another three had their initial post-school placement
break down (but note that the sample included the 5 most difŽcult young people from a
total cohort of 43, not 10). However, transition was not always problematic: most settled
into adult services after 1–3 months, and some took it to ‘‘like a duck to water’’ despite
parent misgivings. All smooth transitions involved a gradual introduction to the new
placement; some of the most challenging people were those whose transition was abrupt.
Nor does refereeing end with satisfactory placement. One carer was told by a staff
member without authority to give it that moving 50 feet over a county boundary would
not affect her daughter’s excellent placement. When it was withdrawn this ‘reluctant
referee’ had to start the hunt again.
The experience of being a ‘reluctant referee’ was inuenced by previous ‘experience of
parenting’, including diagnosis and subsequent involvement with professionals. One
couple described this as a ‘‘rollercoaster ride’’, another regretted leaving the school’s
support: ‘‘The kids there don’t ridicule you, you feel safe, you don’t have to be somebody
else or pretend to be anything else, everything’s just straightforward’’. Paradoxically,
parents from Group I were more likely to recall the moment of diagnosis, as if being able
to envisage a future was balanced by a clearer recollection of the past. Parents with many
difŽculties gave more present-focused accounts. Being a ‘reluctant referee’ was also
inuenced by the ‘meaningfulness of the transition’ for parents: one Group I person was
‘‘still not very tall’’ and considered by her parent ‘‘no different from any other kid’’ at the
age of 25, which shows how difŽcult it is to perceive emotional maturity in the absence of
physical change. People held nebulous ‘concepts of disability’ : parents recalled past
assessments and wondered what ‘age’ their child was now, others struggled to make sense
of autism. The dimension ‘understanding person’s inner world’ resonated strongly with
carers who attended feedback sessions: ‘‘Nobody’s ever assessed him, to what he is in his
mind, I suppose you can’t really’’.
The category ‘communicating with adult services’ was more inuenced by problem
behaviour. Examples of ‘mutual respect’ were ‘‘Staff told me of one or two problems that
were arising; I was quite alarmed but actually realised that this was something that she
had to sort out at college and college would sort it out and I would back them’’, and ‘‘One
of the signiŽcant things with Simon is we had a very supportive family at the back of us
who were prepared to work with us’’. This contrasts with ‘managing alienation’, which
comprised parents who had given up trying to learn the names of rapidly changing staff,
and others who worried about their variable quality : ‘‘People that want to help but don’t
know how can do more damage than what they’re worth, where people that want to help
and know how to help are really worth gold’’. It also contrasts with parents who ‘feel
abandoned’. One said ‘‘I feel like an outsider actually, as though you’ve got leprosy’’,
another ‘‘Maybe there’s a reason why he gets upset, and if there was just somebody we
could perhaps ask about it’’. Considerable distress often accompanied such interviews,
which were lengthy.
Three of the staff interviewed had known the person during transition from school into
their service, although all had access to school-leaving reports and information from
previous placements. This was because four students had moved from their initial post-
school placements (three placement breakdowns, one natural progression from college to
small day placement) and their staff commented on this second transition. For the
remaining three, staff had either started work after the person moved, or had become
 SLD and transition 159
really familiar with them after a reorganization about 18 months previously. Most staff
wanted to know the client experientially : ‘‘I don’t think the information I read really
highlighted her many difŽculties’’. Another was more outspoken despite working with a
challenging Group II client: ‘‘Well, you take a tabula rasa, don’t you . . . it’s quite nice to
work from a blank slate and develop from there’’. Two staff did mention written reports
positively, both concerning Group I people whose problems had diminished. However,
the interest in ‘providing a fresh start’ dominated staff accounts about both groups, and
all other categories connected to it, so this became their core category. It encapsulates lack
of interest in written reports from other staff, and on hearing family history. This
category contains the implicit hope that staff can help people transcend their past and
their stigmatizing labels.
The main activity associated with providing a fresh start was ‘aiming to create positive
change’: ‘‘I think that gave Abdul a real buzz, that he could help other students’’. Staff
were particularly concerned about clients whom they believed to be autistic, who resisted
contact let alone change. SigniŽcantly, no staff member who suspected autism knew
whether it had been diagnosed or not. ‘Hopes for the future’ were largely embedded in
placement change: the person leaving a day centre and going to a mainstream college or
getting a job; and using increasing amounts of respite care to practice for successful
departure from the family home. Families were sometimes seen as barriers: ‘‘We do have
confrontations around parents not wanting sons and daughters to perhaps attend college,
because they don’t want them walking down the road to get the bus—those are the sort
of things we battle with’’.
Staff were concerned to ‘manage problem behaviour’ effectively through good team
work, and by ‘working with visiting professionals’ : ‘‘There were some quite bizarre things
going on [with Clive] so we had a meeting with the psychiatrist and clinical
psychologist’’. Staff largely felt responsible for ‘advising and supporting carers’ about
managing behaviour, but not exchanging dialogue with them: ‘‘Because I let them
[parents] know I was going to refer Simon to a psychologist . . . I think that actually made
them think about what was happening at home a bit more and the effect it had on him’’.
If staff welcomed information from home it was usually about events there likely to affect
behaviour on placement. The member of staff working in a small project jointly managed
by parents and professionals was the exception, demonstrating partnership thinking
throughout the interview.

Content analyses: maturation, and home–placement communication

The grounded theory identiŽed two issues for further consideration. How do people
understand maturation in people with severe intellectual disability? How do parents and
staff address the cultural differences that divide them?
Maturation was systematically pursued by content analysis of interviews containing
the following keywords: growing-up, growing, man, manhood, woman, womanhood,
mature, matured, maturity, maturing. There were brief positive references to maturation
by either placement, parent or both for all but one of Group I: one was described as
having ‘‘matured in the way that she accepts things better than she did’’, while for another
‘‘he really has developed quite a lot in himself. There’s been lots of changes and I think
everyone can see it’’. Similarly people from Group II had ‘‘matured quite a lot since he’s
160 Jennifer Clegg et al.
been up there, everyone says so’’; while another was ‘‘more easy to approach, the violence
has subsided, we don’t have as much violence from him, he’s aware of his contract, he tries
to stick to it’’.
All participants were asked about sexuality. Responses for Group I mainly concerned
lack of support or confused attitudes. One parent reported having been unable to obtain
advice. A student whose keyworker believed he had no interest in women, repeatedly
described heartache over an admired receptionist leaving : ‘‘One of these days I’m going to
just, you know, lose the plot. But if I can’t be with a nice lady what’s the use’’. Other staff
asserted their unit had a positive approach to sexual contact in private, failing to
acknowledge that severely disabled people can rarely be left in complete privacy. For
Group II people, sexuality usually ampliŽed pre-existing problems. For example, one
mother said: ‘‘If he takes a fancy to them he’s—you could perhaps call him a stalker—he
makes their lives a misery and he can be quite intimidating as well, and quite frightening
to them’’. This man’s sexuality was also reported to have recently introduced extra
problems for women staff at placement.
The issue of home–placement communication was considered in a number of ways.
The 1997 survey asked carers to rate communication with day placement on a 4-point
scale. Four out of Žve Group II carers rated communication as ‘good’ (not excellent).
However, this rating was belied by interview accounts. The content analysis found that
some parents roundly criticized review meetings; another complained of no invitation to
meet people who work with her son despite him having attended for 4 years; a third said
‘‘There’s no communication between the day centre and home, you see, unless he’s done
something really bad, and then I’ll get a phone call’’. Despite parents reporting helpful
phone calls from staff on a Sunday and during the Christmas break, and being encouraged
themselves to phone, their overriding opinion was that staff in adult services are
inaccessible because they are ‘‘too busy’’.
Transcripts were searched for references to diaries and communication books. Diaries
to share information between home and placement were raised by both carers and staff for
four people, one from Group I and three from Group II; they were always initiated by the
day service. Two were jointly owned and working successfully, a parent saying,
‘‘Whatever I want them to know I put in the diary’’. The others had been started or
stopped without parents knowing why, nor feeling they could ask. Staff also failed to
persist when information exchange broke down: ‘‘We did start a communication book,
where we’d write a daily account of what was happening, but that sort of died away’’.
Concerns about communication included both amount and content. A Group II man’s
father said, ‘‘You go to a review and suddenly you’ve got not hundreds but dozens of
people from all these different agencies and they know more about Carl than we know.
Where are they when you want to ask the questions, they’ve gone, disappeared into the
woodwork. And it is, to me, it’s like big brother is watching you’’. Informing parents
about an incident or difŽcult behaviour could be construed as an intrusion upon the
carer’s break from the burden of responsibility; it also created anxiety that staff were no
better at coping than the parents, further undermining conŽdence in professionals.
Effective communication accompanied news of an incident with details of a competent
service response, in ways that reduced anxiety and built conŽdence.
Contact with other professionals and its utility to both parent and student was
considered as well. Staff were more likely to describe speech therapists, psychologists and
 SLD and transition 161
psychiatrists as offering useful support and advice. Families made most positive reference
to social workers who supported the transition (many were probably specialist Disabled
Persons Act workers), community nurses who facilitated hospital appointments, and past
annual assessments at a child development centre. Many answers given by parents were
truncated, suggesting this is a difŽcult topic.
Interviewer: Have you had involvement of any other people apart from the day centre, any other
professionals?
Wendy’s mother: No—I can’t remember anything.

The parallel account from staff described a community nurse visiting both centre and
home to discuss Wendy’s incontinence a few times within the last year, making a number
of practical recommendations.
However, it was people involved with Clive, one of the most chronically difŽcult
individuals in Group II, where accounts showed the greatest difference:
Interviewer: Have there been any other people involved with Clive apart from the people at the day
centre?
Parent: No just his social worker.
Interviewer: Just his social worker {yeah} no other outside help at all.
Parent: No.

Clive was very challenging. Senior ofŽcers normally supervise other staff who keywork
individuals but this Senior was Clive’s keyworker, who had involved a speech therapist
and clinical psychologist in individual work. Psychologist and psychiatrist discussed risk
management with staff; the Senior, psychologist and psychiatrist also visited the home to
discuss risk with the extended family. Close coordination was reported with a social
worker who visited the mother regularly. Yet Clive’s mother said that after leaving the
support of the school she had ‘‘got nobody now, you sort of feel ever so isolated’’; the
Senior said ‘‘We’ve done a lot of work with his mother.’’

Discussion
The sample for the study was drawn from a cohort researched for nearly a decade; it is
unique in comparing attitudes and beliefs held by home and day placement. Limitations
include having only two student interviews, carried out too late for the transition to be
uppermost in their minds. Carers were reluctant to allow others to be interviewed because
life was already difŽcult and they protected themselves from anything which might make
things worse. The study did not follow people during the actual transition and some
changes could have occurred before people left school. Finally, the groups were not
entirely comparable : using access to a car as a marker of social deprivation and a screening
question to estimate communication ability, each indicator slightly favours people from
Group I. Nevertheless, comparison of both average number of problems per group
member and the median number of problems per group conŽrms that Group I was more
troubled than Group II in 1989. This position was reversed by 1997.
The grounded theory analysis showed that transition to adult services is perceived in
markedly different ways by placement staff and parents. Staff were future-oriented,
regarding adulthood as an opportunity to transcend the past. Placement changes make
162 Jennifer Clegg et al.
this description of staff perspectives on transition less robust than that of parents, but
workshops with participants, staff and policy-makers supported the contention that
‘providing a fresh start’ is the dominant perspective of adult services. This contrasts with
parental attempts to engender continuity, by making ‘communication with adult
services’ a central component of their transition management. The difference between
these starting points suggests it is no coincidence that both parties described commu-
nicating with the other as a battle to make themselves understood. One major reason that
information passes poorly across both the transitional and the staff –carer boundaries is
because, with few exceptions, staff in adult services valued information from neither
source.
Staff were more likely to adopt an ahistorical approach when working with people
whose problems remained (Group II) rather than reduced. This supports the belief that a
hermeneutic approach, using history and context to generate meaning, makes an
important contribution to the management of challenging behaviour. Attempts to
contextualize behaviour were made through diaries, but lack of negotiation meant that
they failed as often as they worked. Staff should not expect parents to send information
into a vacuum: diaries work best when agreed types of information are exchanged
between people who have an existing relationship.
Family were absent from the ideal future that staff paint for students, conŽrming that
the ‘superseded carer’ remains a prevalent attitude and the normalization ideal of
autonomy lives on. This suggests that any attempt to create a policy umbrella to
change transition systems will meet resistance, because advocates of normalization
emphasize parity with the non-disabled population, for whom transition management
does not occur. However, staff excluding parents from consideration also reects realistic
prioritizing. Many staff expressed concern for carers, but recognized they had neither the
skills nor the time to meet their emotional needs, even though carers turn to them for
support.
A psychological rather than an institutional transition was explored by studying
reports of maturation. The frequent references to other authority bolstering all discus-
sions of maturation suggest that opinions were fragile: the evidence falls short of any
normative view of adulthood. A few parents felt there was no transition. Assertions of
adult status often made by service staff render communication with parents problematic
when nothing changes in their lives : many continue to provide practical support and to
carry ongoing responsibility for these students, just as they did when they were children.
Compromised adulthood in severe intellectual disability is a painful topic, because people
rarely attain the markers of adulthood identiŽed by Ward and Thompson (1997). It
requires adjustment on both sides for dialogue to become possible.
One adjustment arising from this study is to shift focus from independence to mature
acceptance of the help people continue to need. Most adaptive behaviour checklists
enquire whether the person does something independently or with help; what matters to
carers is the nature of that help. For example it is rare for shaving to be achieved
independently by people with severe intellectual disability : of more relevance is whether
assistance is accepted, or if shaving is a distressing episode involving both parents in a
prolonged struggle. Grounding assessments not on normalization, but in the way these
individuals are actually changing, may be a more heuristic approach to assessing
psychological maturation. Appropriate markers reported were developing conŽdence,
 SLD and transition 163
approachability, sticking to an agreement, aggravating others less, and attaining the
emotional stability to accept change more easily. Such markers should be incorporated
into future adaptive behaviour assessments.
A signiŽcant mismatch between perceptions of help received and perceptions of
assistance offered was clear, which neither diaries nor reviews affected. In this study
placement staff valued advice from a range of visiting professionals and believed there
had also been useful discussion between those professionals and the family, but parents
rarely recalled having met anybody except their social worker. Perhaps some inter-
ventions addressed issues identiŽed by professionals not by parents: the treatment of
Wendy’s incontinence may be one example. Other interventions targeted the same
problems that concerned parents, communication and risky behaviour. Staff explained
how interventions were discussed with families, yet families could give no account of
this.
Perceptions of poor support echo Kiernan and Alborz (1996). They followed up a set of
British parents whose young adult children had shown problem behaviours 5 years
earlier. When asked what professional advice had been offered about behaviour manage-
ment in the interim, 30 out of 34 reported none. Did the majority of Kiernan and Alborz’
(1996) parents really receive no service as they reported, or was it so discordant with their
expectations that meetings and advice were forgotten? Research with families whose non-
disabled children present conduct disorders suggests the latter. Stern (1999) estimates
that 40–60% drop out of treatment prematurely and against therapist advice, reporting
they feel hopeless about the possibility of change, and have difŽculty building trusting
relationships with professionals.
Apparently many parents in this study were offered help, but in a way that failed to
register. A few were distressed and preoccupied, conditions that will inhibit their ability
to recall meetings and to engage with what is said in them. Direct care staff cannot
address those emotions alone. The sense of alienation, distress and abandonment
expressed by parents whose children present enduring challenging behaviours requires
a whole-service, systemic approach if the transition is to create any change.
Implications for service change from the whole study are that placement decisions
should be taken early enough for receiving staff to master the person’s history, and a
historical perspective should become an essential prerequisite of person-centred planning.
Services should adopt partnership practices that value the resourcefulness of parents and
siblings; and staff and carers should have better access to support concerning the
management of sexuality. Finally, specialist services are required for young people with
severe intellectual disability and enduring challenging behaviours during transition.
These should aim to share the emotional burden of care with families, by employing staff
who can contain powerful emotions and make a longer-term commitment. To ensure
accessibility and effectiveness, staff would need specialist experience and reduced case-
loads. They should use the gap between what services believe is offered and what parents
say they receive to spur reection and innovation.

Conclusions
Following the transition from school to adult services, students with severe intellectual
disability who present challenges were more likely to develop problem behaviours
164 Jennifer Clegg et al.
associated with sexuality, to experience abrupt rather than gradual transitions, and to
work with staff who mistrust written reports. People whose challenges diminished were
more likely to have staff who valued past history, and parents who reported an effective
working alliance with staff. However, when working with students whose behaviour
challenges, staff were most likely to devote energy to teamwork, and to use support from
visiting professionals.
Considerable distress was expressed by some parents whose children presented high
levels of enduring challenging behaviours. They could not recall contact with, or advice
from, peripatetic professionals, although it had usually been offered. Services for the most
challenging young people need to contain rather than to increase anxieties : to work as
much with parents as with their children. Services should aim not just to advise, but to
share the burden of care.
There is a gulf between parents and staff in the assumptions they hold about the
school–adult services transition, and the expectations they hold of their relationship.
This gulf is embedded in a culture that places adult autonomy above partnership
practices with parents. This is a systemic issue which cannot be ameliorated solely by
individual workers: policy initiatives are also required at national level.

A cknow ledgements
We acknowledge the help of Nottingham Joint Commissioning Group for funds; John Cromby, Richard
Lansdall-Welfare, Val Leyland, David Stewart; and the parents, school and college teachers, day staff and
people with learning disabilities who so willingly shared their experiences.

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Received 3 March 2000; revised version received 21 June 2000

Appendix

External audit
Guidelines for external audit are not Žrmly established, but require the auditor to be
familiar with the method and area of enquiry while remaining removed from the
particulars of the project. This evaluation proceeded from the suggestion that metho-
dological rigour encompasses two primary criteria, trustworthiness and authenticity. The
second is considered unique to the constructivist perspective and entails an emphasis on
the process rather than the product of research (Rodwell & Byers, 1997).

Trustworthiness
Interview transcripts, memos and emerging categories were examined at three different
stages of coding. The auditor queried the interpretation and appropriateness of several
categories, but two researchers satisfactorily answered questions on separate occasions.
The audit raised questions concerning changes from the second to the third stage of
coding and the renaming of some categories. The Žrst author was easily able to explain
the developments in terms of coding guidelines (Strauss, 1987) and to support the new
coding scheme with samples of interview data that in nearly all cases seemed clear and
relevant. New categories could be mapped onto the previous set without much effort.
The audit also included examination of nine stages of a working model of the
relationship between central ideas emerging from the coding. The auditor favourably
evaluated the Žnal version for plausibility and ‘Žt’.
166 Jennifer Clegg et al.
Authenticity
Direct observation of some coding in the early stages of the project allowed for
conŽrmation of the fairness of the coding and category selection. Viewpoints of all
coders were considered and categories negotiated through ongoing discussion. The lead
researcher did the Žnal coding but, as noted, the coding was generally consistent with
earlier categories.
Educative authenticity was enhanced through provision of feedback sessions to
participants (carers, placement staff and one service user). The audit included an
observation of one of these sessions and evaluation of participants’ comments on project
aims, the analysis, and implications. This suggested that carers in particular identiŽed
the conclusions as relevant.