Holiday Play for Children with Disabilities in England: Access, Choice and Parents’ Views about IntegrationWendy Parkera, Heather Gage*a, Annette Sterrb, and Peter Williamsc

aSchool of Economics, University of Surrey, Guildford, England; bSchool of Psychology, University of Surrey, Guildford, England; cDepartment of Mathematics, University of Surrey, Guildford, England

Families with children with disabilities can feel isolated during school holidays and concerns exist

that they face greater difficulties than families of children without disabilities in finding enriching

activities for their child. In the context of national policies that encourage integrated play, local

service commissioners in England require evidence on what sort of short breaks parents and children

prefer. The parents of 99 children with disabilities and 43 children without disabilities attending

various holiday play schemes in summer 2010 completed mailed questionnaires. Parents of children

with disabilities reported more difficulty getting information, less choice of schemes and further

distances to travel than parents of children without disabilities. Although 72% of parents of children

without disabilities and 55.5% of parents of children with disabilities stated integrated schemes would

be suitable for their child, open text comments provided weaker support. Variety of provision is

required to meet all needs and preferences.

Keywords: children with disabilities; children without disabilities; Holiday activities;

Questionnaire; Access; Choice; Integrated; Segregated

Introduction

Many parents or carers (hereafter parents) of children with disabilities want a rest from

caring, and some personal time to spend with other siblings or socialising. There is consistent

evidence that, in addition to giving children with disabilities new experiences, short breaks

(or respite) from caring responsibilities reduce carer stress (McConkey et al 2004;

* Corresponding Author. Email: h.gage@surrey.ac.uk

Department for Children, Schools and Families & PWC, 2006; NEF Consulting, 2009), and

may even avoid entry of the child with a disability into long term care and family breakdown

(Langer et al., 2010; Robertson et al., 2010; Welch et al., 2010). Hence, the Aiming High for

Disabled Children (AHDC) policy in the United Kingdom (UK) put considerable emphasis

on carer support in the form of short breaks (HM Treasury, 2007), and subsequent policy has

consolidated this approach (Department for Education, 2011). There are many forms that

short breaks can take including day and overnight care in the child’s own home or another

setting. The study reported in this article focussed on recreational activities in the school

summer holidays.

Access to short breaks in England depends on a number of factors related to the child’s

disability, family circumstances and local policies. Children are assessed in their family

situation, and provided with support from the local authority according to need. Children with

high needs are typically able to access short breaks through the agreed individual package of

support, whilst parents of children with less assessed needs pay subsidised fees for their child

to attend. Increasingly families receive support in the form of an individual budget, which

widens their choice of provision, although some evidence suggests that not all welcome the

responsibilities that come with this arrangement (McGill & Honeyman, 2009; Welch et al.,

2010).

Local authorities provide block grants to organisations that provide approved short

breaks (Holmes, McDermid, & Sempik, 2010). The provider landscape has diversified in the

UK recently (Cramer & Carlin, 2008) and a range of organisations now offer short breaks,

including those specialising in care for children with disabilities, and providers of mainstream

leisure activities for children without disabilities. The disability and equality legislation

requires all mainstream providers to make “reasonable adjustments” to facilitate participation

of disabled people in anything they want to access. Some mainstream leisure schemes exceed

that minimum requirement by actively encouraging and enabling integration of children with

disabilities through such initiatives as “taster visits”, befriending and “bridge workers”

(trained staff to support children with disabilities at the facility of their choice) (HM

Treasury, 2007; Department of Children, Schools and Families & DCMS, 2008; Play

England, 2009). The social model of disability attributes disability to the physical barriers

and prejudiced attitudes that prevent people with disabilities being included in society and

having equal opportunities, rather than to their impairments (Scope, 2014). In the social

model of disability, it is not the child that changes, but schemes that adapt to the child’s

abilities (Office of Disability, 2014). KIDS, a government-supported organisation, promotes

inclusive play, leisure and child care for children with disabilities, and lobbies for

developments to remove barriers to access (KIDS, 2008; Play England, 2009).

Families with children with disabilities can feel particularly isolated during school

holidays and want access to play and leisure schemes that allow their children to participate

in the same enriching activities that other families take for granted (Knight, Petrie,

Zuurmond, & Potts, 2009; Sharma & Dowling, 2004). Holiday activities provide an

opportunity for children with disabilities to have fun, enjoy a range of activities and make

new friends, resulting in improved self-esteem, independence and social skills, and reduced

feelings of isolation (Beresford & Clarke 2009; Clark & Nwokah 2010; Cotterill, Hayes,

Flynn, & Sloper, 1997; KIDS, 2009; Manwaring & Taylor, 2007). Concerns exist, however,

that families of children with disabilities face greater difficulties than families of children

without disabilities in finding appropriate holiday play activities for their children.

Social inclusion is a national priority in England (Department for Education and Skills,

2001; Department for Work and Pensions, 2012), and policy seeks to give children with

disabilities the right to an “ordinary life” (Clarke, 2006; Prime Minister’s Strategy Unit,

2005) by improving access to leisure activities through schemes such as ADHC (HM

Treasury, 2007); the Children’s Plan (Department for Children, Schools and Families, 2007,

2008); and the Play Strategy (Department of Children, Schools and Families & DCMS,

2008). In this context, integrated play and leisure schemes catering for children with and

without disabilities are encouraged as a means of reducing social isolation. For many children

with disabilities, however, specialist provision offering higher ratios of trained staff to deal

with challenging behaviours and complex needs may still be the preferred option (Abbott &

Jessiman, 2014; Beresford & Clarke, 2009; KIDS, 2009). Local service commissioners lack

information about the sort of short breaks parents and children want, and more evidence is

required on which types of breaks give the best outcomes for children with different sorts of

disability, parents, carers and siblings (Beresford & Clarke, 2009; Clark & Nwokah, 2010;

Department for Children, Schools and Families & PWC, 2006; Langer et al., 2010;

Siperstein, Glick, & Parker, 2009).

The aim of the study was to explore the experiences of parents regarding access to and

choice of holiday play schemes, and their views about integrated schemes in comparison with

specialist schemes that only cater for children with disabilities. We sought to build on earlier

research (Petrie, Itohan, Oliver, & Poland, 2000) and provide more contemporary evidence

about what types of schemes the parents of children with disabilities want. To compare

experiences and views, information were also gathered from the parents of children without

disabilities.

Methods

The setting was the county of Surrey, in southern England which covers an area of 647

square miles (1,663 square kms) and has a resident population of 1.1 million. Almost one

quarter of the population (24%) lives in rural areas or market towns of less than 30,000

people, 5% are from Black and minority groups (vs. 8.7% in England and Wales), and

approximately 10% of children in poverty (Surrey County Council, 2011; Surrey Rural

Partnership, 2010). Information was gathered from parents of children with and without

disabilities attending holiday schemes in summer 2010 by means of a mailed survey. We

focussed on children of primary school age (4 – 11 years) for whom supervision in the

holidays is essential. The study was exploratory and observational. It received a favourable

opinion from the University of Surrey Ethics Committee.

To recruit the sample of parents of disabled children we mapped specialist holiday play

scheme provision in the county. Services for families with disabled children are delivered

mainly by the third (voluntary) sector, and at the time of the study, information on providers

was not held centrally. Using a recent county-wide survey (Surrey County Council, 2008),

local authority and third sector websites and word of mouth we identified a total of ten

potential specialist providers of holiday play schemes for children of primary school age and

invited them to participate in the study. Three did not respond, and three replied that they had

no holiday scheme running. Four providers, all from the voluntary sector, offering five

different schemes agreed to assist: single disability schemes for children with autism

spectrum disorder [ASD] (30 places) and children with complex needs (eight places), two

schemes taking children with any disability (20 and 30 places) and an integrated scheme (40

places) taking children with and without disabilities in approximately equal numbers. All

schemes charged a small daily fee to parents. The full costs of provision were subsidised by

fund raising by the scheme, and grants from the local authority. All schemes were located in

local school premises, with the exception of the special needs scheme which had its own

facilities.

We sought volunteer mainstream schemes in order to recruit parents of children without

disabilities (the comparison group) and parents of children with disabilities who had chosen a

mainstream holiday scheme for their child. Most mainstream schemes are run locally by

districts or boroughs, and it proved difficult to find ones that could confirm they had children

with disabilities attending. We therefore asked for referrals from a local authority play

manager. Two schemes were nominated, both of which took about 100 children and actively

sought to encourage participation of children with disabilities. Although both agreed to

participate, subsequent problems with the distribution of questionnaires to parents meant one

scheme was disregarded in the analysis. For-profit holiday activity schemes provided by

private companies were not considered because their charges are higher than local council

and third sector schemes and funding is not usually available to support attendance of

children with disabilities.

A structured self-completion questionnaire was designed, pilot tested and refined. The

items and response options were based on a literature review and other surveys of the

families of the children with disabilities (Bryson et al., 2008; Surrey Alliance, 2009a). The

completed questionnaire requested background information on the child, and the parent

respondent, but mainly focussed on a series of questions on access to and choice of holiday

play scheme, and parents’ views about the types of schemes they thought were suitable and

best for their child (Table 1). Two validated instruments measuring long standing difficulties

(Bryson et al., 2008) and ability to participate in activities (Bourke Taylor, Law, Howie, &

Pallant, 2009) were used to gain an indication of the level of disability of the child.

To ascertain parents’ preferences for different types of holiday play scheme, we

established a typology based on the current provider landscape in England and with reference

to available literature (Beresford & Clarke, 2009; Clarke, 2006; Sharma & Dowling, 2004).

Six types were identified, distinguishing between providers as specialist or mainstream, and

the extent and nature of integration of children with and without disabilities: specialist

segregated (i.e. disabled children only) for children with a single disability (e.g. autism,

epilepsy); specialist segregated for children with any disability; specialist for children with

disabilities and their siblings; specialist integrated (for children with and without disabilities);

mainstream schemes offering extra support for children with disabilities; and mainstream

schemes providing reasonable adjustments as required by disability legislation but no

additional support for children with disabilities. The two mainstream models have been

termed “active” and “pseudo” inclusion respectively (Beresford & Clark, 2009). Brief

descriptions were used in questions that asked parents about the suitability of different

schemes for their child (see Table 1).

[t] Insert Table 1 near here/[t]

For confidentiality reasons, questionnaires were provided to scheme organisers. They

were asked to identify children aged 4 – 11 years who had attended their scheme during the

summer of 2010. All parents of children attending specialist schemes, and children with

disabilities attending mainstream schemes, were sent questionnaires. Due to large numbers of

children enrolled, and to maintain a better balance between the number of questionnaires

distributed to the parents of children with and without disabilities, a sampling approach was

used for parents of children without disabilities in the mainstream schemes. Only those

parents of children without disabilities who had used the scheme for the last week (or three

weeks) that the scheme ran (depending on the scheme) were included. Questionnaires were

mailed in mid-September 2010, about two weeks after the end of the summer holiday session.

A free-post envelope was provided for return of completed questionnaires direct to the

research team. The name of the child who had attended the play scheme was included in the

cover letter, and parents were asked to complete the questionnaire with reference to this

individual (rather than other children they may have). Completion of questionnaires were

anonymous, but a scheme-specific code was placed on the forms prior to distribution so that

responses could be related to particular programmes. To encourage participation, parents

returning a completed questionnaire could enter a prize draw for store vouchers. All scheme

providers (except one) sent an email reminder to parents approximately three weeks after the

original mailing.

Analysis

Data were entered into SPSS Version 17 (SPSS Inc., Chicago, IL, USA) for analysis. A new

variable was created to reflect whether or not the child had a disability because the question

“do you consider your child to be disabled?” was answered “no” by some parents,

particularly those with children with ASD, who indicated in other responses that their child

had various difficulties. All children attending specialist schemes for ASD, complex needs, or

any disability, and any reporting significant longstanding difficulties, autism/Aspberger’s

syndrome, receipt of formal help for disability or complex needs were included in the

disabled group. A child was considered “not disabled” when the parent considered the child

was “not disabled”, and/or reported no or low longstanding difficulties.

The children with disabilities fell naturally into three groups: ASD (all children

attending the specialist ASD scheme, and those at other schemes reporting a diagnosis of

Autism/Aspergers); complex needs (all children at the specialist complex needs scheme, and

those at other schemes who scored “severe” on most (except hearing and visual) longstanding

difficulties; and those with serious learning difficulties (including four children with Down

syndrome).

Summary statistics were calculated for all the main variables. The characteristics of

parents and children were compared by disability type using appropriate statistical tests (Chi-

square for categorical variables, or Fisher’s Exact with an expected cell count of < 5, Kruskal

Wallis for ordinal variables, or Mann Whitney U when only two disability groups were being

compared, and an unpaired t-test for normally distributed continuous variables (age and

summative scores) when two disability groups were being compared). Responses of parents

of children with disabilities were compared to those of children without disabilities regarding

summer holiday activities attended, ease of finding information about holiday schemes,

barriers to access, factors affecting choice of scheme, perceived benefits or attending schemes

for parents and for children, and types of schemes considered suitable and best for their child.

Reasons given for decisions about the suitability of different types of schemes were analysed

according to whether parents stated that integrated schemes would vs. would not be suitable

for their child. Responses were read several times and a coding scheme developed to reflect

the main themes.

Results

Response Rate

Responses from 142 parents were available for analysis: 99 (69.7%) children with disabilities

(nine learning difficulties, 15 complex needs, 75 ASD); 43 (30.3%) children without

disabilities. Based on the number of questionnaires provided to schemes for mailing (N =

535), the overall response rate was 26.5% but there was much variability between the six

schemes. Responses were highest from the specialist segregated schemes (34/50, 68.0% ASD

scheme; 5/21, 23.8% complex needs scheme; 44/157, 28.0% from the two schemes taking

children with any disability) and lower for the integrated (25/133, 18.8%) and mainstream

scheme (34/174, 19.5%).

Characteristics of Parent Respondents and Children

Most respondents (over 90%) were mothers, reporting white ethnicity and home owner status.

Parents of children without disabilities were more likely to have received higher education

than parents of children with disabilities, and were more likely to be in employment.

Significantly higher numbers of children in the ASD group were male (compared to the other

groups). As expected, children without disabilities had few longstanding difficulties, and

children with complex needs had the highest mean score (Table 2). There is a strong

correlation between longstanding difficulties and ability to participate in activities (more

difficulties, greater inability), Pearson correlation R = .816, p < .0005, n = 141).

[t] Insert Table 2 near here/[t]

Regarding activities over the five week summer holiday, slightly more parents of

children with disabilities reported they had no family holiday (n = 48, 48.5%) than parents of

children without disabilities (n = 18, 41.9%), but the difference was not statistically

significant (Mann Whitney U, p = 0.18). Since the respondents were recruited through

holiday play schemes, all reported at least one week of attendance, and over a quarter of both

children with and without disabilities had spent at least two whole or part weeks attending

schemes.

Choice of Holiday Play Schemes

Parents of children without disabilities tended to report finding it easier to obtain information

about holiday play schemes than the parents of children with disabilities. Few parents in

either group stated that transport or cost were barriers to access, but parents of children

without disabilities were more likely to cite limited opening hours and that schemes did not

take siblings as problems, and the parents of children with disabilities were more concerned

about schemes not running for all or part of the holidays (Table 3). Children with disabilities

travelled significantly more miles than children without disabilities to their holiday play

scheme: mean 5.33, 95% CIs 4.54 – 6.11 (SD = 3.91) n = 9 7 vs. mean 2.26, 95% CIs 1.78 –

2.75 (SD = 1.59), n = 43.

[t] Insert Table 3 near here/[t]

From the list of 17 possible factors influencing choice of scheme (Table 1), the parents

of children with and without disabilities agreed to about nine of them. Factors that were

significantly more important to the parents of children with disabilities were: closeness to

home (very/extremely important to 65% vs. 44%), sensitivity to the child’s needs (96% vs.

78%), and the ratio of staff to children (86% vs 65%). Parents of children without disabilities

stated that they were more concerned about whether the child had attended before (55% vs.

37%), if siblings could attend (79% vs 16%), opening hours (69% vs. 49%), sensitivity to

cultural needs (35% vs, 21%), and cost (68% vs. 38%) (Figure 1).

[f] Insert Figure 1 near here/[f]

Perceived Benefits from Holiday Play Schemes for Children and Parents

Over 80% of both groups of parents viewed holiday play schemes as being extremely or very

important for increasing their child’s confidence and self-esteem, and to broaden her or his

experience and skills. A safe environment were extremely or very important to 100% of

parents of children with disabilities and 95% of parents of children without disabilities. More

parents of children with disabilities thought improving social skills were extremely or very

important (75% vs. 65%, marginally significant); more parents of children without

disabilities attribute importance to benefits from holiday play schemes for health and physical

activity (79% vs. 68%) and for social interaction with children of different backgrounds (75%

vs 57%) (Figure 2).

[f] Insert Figure 2 near here/[f]

The views of parents of children with and without disabilities differed significantly

regarding the benefits for themselves and their families from a child attending a summer

holiday play scheme. Higher proportions of parents of children with disabilities rated

extremely or very important benefits from rest (respite) (68% vs. 19%), improved family

functioning/reduced stress (75% vs. 24%), and providing time for themselves, or to socialise

or to spend with other siblings (37% vs. 12%). More parents of children without disabilities

thought holiday play schemes were important to allow them to work, train or study (76% vs.

38%) (Figure 3).

[f] Insert Figure 3 near here/[f]

Types of Play Schemes Considered Suitable

Most (90.7%) parents of children without disabilities stated that a mainstream scheme

without additional support for children with disabilities (“pseudo” inclusive) was suitable for

their child, and slightly lower proportions thought a fully supported mainstream scheme

(“active” inclusive, 79.1%) or integrated schemes (72.1%) were suitable (Table 3).

The views of parents of children with disabilities were similar across the three

categories of disability. A relatively small proportion (10.1% overall) considered mainstream

schemes without additional support (“pseudo” inclusive) to be suitable, but around one half

(40.0% of complex needs) thought the supported “active” inclusion model would be suitable.

High proportions deemed specialist schemes appropriate (84.8% single disability, 68.7% any

disability, 72.6% sibling schemes). Parents of children with ASD were more inclined to

favour single disability schemes over generic schemes for children with any disability (88.0%

vs. 64.0%) (Table 4).

[t] Insert Table 4 near here/[t]

Types of Play Schemes Considered Best

Most parents (69.8%) of children without disabilities thought that a mainstream scheme

without extra provision for children with disabilities was the best model of provision for their

child. Views of parents of children with disabilities varied. Parents of children with complex

needs tended to prefer specialist schemes. Amongst parents of children with ASD, most

(61.3%) favoured a single disability scheme. Schemes for children with disabilities and

siblings were ranked first by only two of the 99 parents of children with disabilities (Table 5).

There was some mismatch between expressed preferences and the scheme through

which parents were recruited, possibly reflecting access and availability. For example, 16 of

30 parents of children with ASD recruited through a specialist scheme for children with any

disability stated the “best” scheme for their child would have been a different model (11

would have preferred a specialist scheme just for children with ASD).

[t] Insert Table 5 near here/[t]

Willingness to Integrate Child, and Reasons Given

Twelve (27.9%) parents of children without disabilities stated that a specialist integrated

scheme would not be suitable for their child. Amongst the remaining parents stating that they

thought an integrated scheme would be suitable, about one half of the open text comments

(11/20) indicated that they had reservations, particularly that their child did not have any

disability so did not need a specialist scheme (Table 6).

More than half of the parents of children with disabilities (55/99, 55.5%) stated that an

integrated scheme would be suitable for their child, but the majority of their open text

comments (41/43) provided reasons why they were against it, particularly that their child

could not cope with a mainstream scheme, or would not be understood, or needed more

support. Most of the small number of comments offered in favour of integration came from

parents whose child’s disability was mild (Table 6).

[t] Insert Table 6 near here/[t]

Discussion

Summary of Main Findings and How these Relate to Prior Research

This is the first study for over a decade to look specifically at holiday play provision for

children with disabilities in England. An earlier study in London showed respite benefits for

the mother, in addition to positive experiences for the children, but did not include a

quantitative component or comparison with children without disabilities (Petrie & Poland,

1998; Petrie et al., 2000). Parents of children with and without disabilities in our study

reported similar patterns of holiday activities with around one quarter of children in both

groups attending holiday play schemes for at least two of the five week summer season.

Parents of children with disabilities, however, reported more difficulties in gathering

information about holiday play schemes; this is an important access barrier that has also been

identified in national surveys (Abbott & Jessiman, 2014; Beresford & Clarke, 2009; Kids &

Mencap, 2011; Langer et al., 2010). Transport was not cited as a problem for either group of

parents in accessing the holiday play schemes, although other studies emphasise affordable

transport as a barrier (Every Disabled Child Matters, 2007; Langer et al., 2010), particularly

for low income families (Kids & Mencap, 2011). This may be because the parents responding

to the survey were all scheme users who had managed to get their child to the activity.

However, the children with disabilities travelled significantly further to reach the schemes

they were attending than the children without disabilities. Whilst local authorities routinely

provide mainstream holiday play schemes for the children of their residents, specialist

schemes for children with disabilities tend to rely on independent or voluntary providers and

are less widespread such that parents often travel across several local authority areas to reach

available provision. Further indication of access problems for children with disabilities was

the mismatch between the most preferred type of scheme and the type of scheme through

which parents were recruited to the study, especially for the ASD group where specialist

ASD provision seemed to be lacking.

Comparisons of the views of parents of children with and without disabilities in this

study highlights the differences in priorities between the groups. In choosing a scheme,

parents of children with disabilities were particularly concerned about closeness to home, the

ratio of staff to children, and that staff are sensitive to the needs of their child. In contrast,

parents of children without disabilities were more concerned about cost and convenience,

particularly that opening hours were not limited, and that siblings could be accommodated in

the same scheme. Households with children without disabilities were more likely to have two

earners, and holiday play schemes are important to enable them to work. On the other hand,

families with children with disabilities, in which one adult may be a full time carer, tended to

perceive holiday play schemes as short breaks, and for respite benefits. Other researchers

have also reported on the value of short breaks for parents, for respite (Abbott & Jessiman,

2014; Barker et al., 2003; Robertson et al., 2010; Welch et al., 2007), and of holiday play

schemes for all children with disabilities, whatever their disability, for companionship and

exposure to varied activities and experiences (McConkey et al., 2004; Petrie & Poland, 1998;

Petrie et al., 2000; Wilkie & Barr, 2008).

This study is unique in seeking views about integration from parents of both children

with and without disabilities, and because it identified different levels and types of

integration. However, some inconsistencies in parental responses are notable. Although 72%

of parents of children without disabilities stated that an integrated scheme would be suitable

for their child, the open text comments provided weaker support for this statistic. Many

parents offering comments stated that their child didn’t need a specialist scheme because they

did not have a disability. Similarly, although more than 50% of parents of children with

disabilities stated an integrated scheme would be suitable, a large number of comments were

offered as to why a mainstream scheme was not desirable in practice (including the need for

extra support and trained staff, poor attitudes of children without disabilities, inability of the

child to cope or socialise). We do not know the reason for these inconsistencies, but it may

reflect socially desirable responding. Other studies vary regarding their conclusions about the

benefits of segregated vs. inclusive schemes (Clark & Nwokah, 2010). The nature and level

of disability is a likely influencing factor, for example, the effects of integrating children with

and without intellectual disabilities has been favourably reported (Siperstein et al., 2009).

Most (79%) parents of children without disabilities thought a mainstream scheme was

best for their child, and most (75%) parents of children with disabilities stated that a specialist

segregated scheme would be their most preferred arrangement. A national survey reports a

lower proportion (52%) of parents thinking that their disabled child would be better in

specialist provision, citing staff training as an important reason (Clarke, 2006). Although

infrequently regarded as the “best” type of provision, sibling schemes were, however,

acceptable to high proportions (72%) of the parents of children with disabilities who had

more than one child, and other surveys have shown that there is a demand for this type of

provision (Kids & Mencap, 2011; Surrey Alliance, 2009a). No holiday schemes for children

with disabilities and siblings were found in our local mapping and this may be a gap in

provision that needs filling nationally. More generally, a shortage of provision for children

with complex health needs and low incidence needs has been identified (Gray, 2006; Social

Care Institute of Excellence, 2008).

Limitations

The study is limited in several ways. The questionnaire was delivered to users of a small

sample of holiday play schemes and therefore does not capture the experiences and views of

parents whose children attend other schemes, or of parents whose children do not attend any

schemes. Evidence suggests that many children do not access to short breaks, including

holiday play schemes (McGill & Honeyman, 2009), particularly those from lower income

backgrounds (Welch et al., 2010). The study was conducted in one county in southern

England, which, although socio-economically diverse, has proportions of ethnic minorities

below the national average (Surrey County Council, 2011).

The overall response rate by parents to the survey was low (26.5%), and estimated,

based on the number of questionnaires requested by providers who (for confidentiality

reasons) distributed the questionnaire on behalf of the research team. It is not known exactly

how many questionnaires were mailed out. Estimated response rates varied between schemes

and were generally higher from parents of children with disabilities. The response rate from

the specialist integrated scheme (taking 50% children without disabilities) was relatively

evenly distributed (56% without disabilities, 44% disabled). In the mainstream scheme,

85.3% of responses were from parents of children without disabilities, but it is not known if

this is representative of attendance (compared to children with disabilities). Because

children’s needs vary, the analysis was conducted using three disability groupings, but the

learning disability group was small and less homogenous than the other two groups. When all

children with disabilities were analysed together, the large ASD group may have influenced

the findings.

Data cleaning may have introduced some inaccuracies. A few respondents gave written

explanations about the types of schemes that were suitable for their child, instead of ticking

boxes, and where possible, inferences were made from the free text. It was apparent from

responses to open questions that a small number of parents of children with disabilities

confused specialist single disability schemes and schemes for children with any disability.

Also six parents of children without disabilities stated specialised segregated schemes would

be suitable for their child. These inconsistencies were corrected through data triangulation but

other misinterpretations could have occurred because the descriptions of schemes used on the

questionnaires were brief. The typology was carefully designed with reference to the current

landscape of provision, but it may not have been clear to respondents who had no opportunity

to ask for clarification because data collection was by mail.

The study only covered children of primary school age although finding fulfilling

holiday activities is also important for teenagers and young people. Certain issues of interest

were not included in the questionnaire because of they were considered sensitive and likely to

discourage participation. In particular, gaining information on family expenditures and

subsidies on short breaks would have been useful as cost is an issue for many families (Kids

& Mencap, 2011). The study did not set out to compare outcomes of different types of

schemes for children with different disabilities, although such information would be

important for service planning. The survey asked parents for their views, and no feedback

was gathered from children due to resource constraints. The preferences of children are very

important, but cannot be captured by survey means. Future research should include in depth

interviews with parents to complement survey findings, as well as covering childrens’ views.

Implications for Policy and Service Planning

The policy context in the UK emphasises the inclusion of disabled children and families in

universal settings (HM Treasury, 2007). Children with disabilities express a sense of isolation

(Sylvester, Donnell, Higgins, & Stalker, 2014) and a strong desire to be able to do the same

things, and go to the same places as “ordinary” children (Every Disabled Child Matters,

2007). Recent UK evidence suggests, however, that many Children with disabilities are

unable to access local playgrounds and clubs due to unwelcoming attitudes and lack of staff

knowledge (Scope, 2014; Thompson & Emira, 2011), despite the efforts of organisations that

promote this agenda (Every Disabled Child Matters, 2007; KIDS, 2008; Sharma & Dowling,

2004). Within Europe, children with disabilities have been shown to take part in fewer

activities than other children of their age (Sparcle, 2016).

The requirements that need to be met to allow children with disabilities to be included

in mainstream schemes have been well rehearsed (Abbott & Jessiman, 2014; Thompson &

Emira, 2011), and were reiterated by our respondents. They go beyond the “reasonable

adjustments” necessitated by disability and equality legislation to facilitating “active”

inclusion through provision of a skilled workforce (Beresford & Clarke, 2009; Clarke, 2006;

KIDS, 2008; Sharma & Dowling, 2004; Woolley, Armitage, Bishop, Curtis, & Ginsborg,

2003), adapted premises, bridging services, and a strategic commitment to fund and

implement inclusion (Kids & Mencap, 2011). Accomplishing this requires educating

community based programmes and agencies in providing services that are accessible to all.

True inclusion, however, requires that children with disabilities are able to fully participate in

activities, and this may not be possible for some children with disabilities, even in schemes

that are actively inclusive. This situation has already been identified in the education sphere,

where it is acknowledged that participation for some children with disabilities may be more

attainable in specialist and segregated settings (Warnock, 2005; Woolley et al., 2003). The

concept of “opportunity inclusion” has been introduced. This requires services specifically

designed for children with disabilities or young people with similar levels of ability, but

which allow them the opportunity to take part in or experience the same activities as children

without disabilities (Beresford & Clarke, 2009).

Children with disabilities are not a homogenous group and can have any combination of

a range of needs (physical, learning, behavioural, sensory, communication, complex health).

The findings of this study confirm those of others that parent views regarding the suitability

of different types of holiday play provision can vary within and between categories of

disability and that, for equality with children without disabilities, a range of schemes should

be available to enable choice, depending upon circumstances and preferences (Beresford &

Clarke, 2009; Clarke, 2006). The provision of short breaks has shifted away from residential

care to community-based initiatives (Cramer & Carlin, 2008) and profiling of children to

receive different types of short breaks (McConkey & Adams, 2000) is no longer possible or

appropriate. Local provision needs to respond to the wishes and preferences of children with

disabilities and their families (Beresford & Clarke, 2009). To the extent that individual

budgets are taken up, these provide parents with the ability to select schemes and influence

longer term provision.

Conclusions

Whilst appearing to support the notion of integrated holiday play, many parents of children

with disabilities in this study simultaneously expressed practical concerns. Similarly, parents

of children without disabilities did not oppose integration, but few offered positive comments

in favour of encouraging the inclusion of children with disabilities in mainstreams schemes.

From both groups of parents (of children with and without disabilities), support for

integration seems somewhat hesitant and conditional indicating a tension between legislation

and realist and the fragile nature of progress on inclusion (Thompson & Emira, 2011).

This study was conducted against a background of an overall lack of opportunities for

children with disabilities, both universal (mainstream with trained staff) and specialist, and

many families are not able to access holiday play schemes for their children (Kids & Mencap,

2011). Amongst our sample (all of whom had access to holiday play in summer 2010),

significant numbers attended schemes that would not be the first preferences of their parents.

In the current era of fiscal contraction, expanding provision may fall increasingly on local

voluntary activity. As the service commissioning environment is changing, with more

emphasis placed on empowering families through individual budgets (Department for

Education, 2011; HM Treasury, 2007;), more rigorous research on how families make

choices is needed, and on the individual outcomes for children and families from different

holiday play scheme types (Clark & Nwokah, 2010). Serious ethical and methodological

challenges exist, however, in the design of such studies, particularly to identify appropriate

outcomes that are child-led (Together for Disabled Children, 2009), measureable and

sensitive to differences in provision so that effectiveness and value-for- money of alternatives

can be accurately assessed.

Acknowledgements

The authors thank Surrey County Council, Surrey District and Borough Councils and all the

service providers, their staff and the families who contributed to the research, Dr Anne Bird

for advice on medical aspects, and Jake Jordan and Tom Rowles for help with data entry. We

are grateful to two anonymous reviewers for helpful feedback on an earlier version of the

paper.

Funding

This research was funded by an anonymous donor through the support of Disability

Challengers, a major provider of play schemes for disabled children in Surrey. The views

expressed in this report are those of the authors and not necessarily those of the funder or

Disability Challengers.

Disclosure Statement

No potential conflict of interest was reported by the authors.

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Table 1. Items included in the questionnaire.

Section Item ScoringA. Background information on child

Age YearsSex Male / FemaleConsider child disabled Yes / NoOn local disability register Yes / NoTreated by complex needs team Yes / NoSpecial Educational Needs Yes / NoDisability Living Allowance (Care)

No / Low / Medium / High

Disability Living Allowance (Mobility)

No / Lower/ Higher

Attends special school Yes / NoLongstanding difficulties (Bryson et al., 2008)

Score 1 none, 2 low, 3 moderate, 4 severe for 12 difficulties (e.g. mobility, personal care, behaviour, continence, communication), and mean calculated

Ability to participate in activities (Bourke Taylor et al., 2009)

Score 4 unable, 3 with assistance at all stages, 2 some help needed, 1 supervision only, 0 independent for 8 activities at home (e.g. watching TV, playing) and outside home (e.g. playing in playground, attending club), summed (range 0-32)

B Background information on parent / carer

Sex Male / FemaleAge Under 30; 30 – 39; 40 – 49; Over 50 yearsRelationship to child Mother / OtherLiving arrangements With partner / Alone / With othersTenure Home ownership vs. rentNumber of children < 18 in household

0; > =1

Highest level of education College or University (or not)Number of earners in household

C About holiday play schemes

Obtaining information on schemes

Very easy / Easy / Neither easy nor difficult / Difficult

Access barriers Yes / No / Not relevant for six possible barriers:

Fully booked / Too expensive / Too far or transport difficulties / Limited opening hours / Didn’t take other children / Not available all or part of holiday

Factors affecting choice of scheme5 point scale of importance for 17 possible factors:

Child attended before or had taster session / Information from providers / Recommendation from others / Close to home / Transport available / Convenient opening hours / Child’s friend attending/ Quality of facilities / Type of activities / Staff: child ratio / Staff training / Warmth of welcome/ Sensitive to cultural needs / Sensitive to child’s needs / Communication with staff / Siblings could attend (if relevant) / Cost

Perceived benefits of holiday play schemes for children5 point scale of importance for 6 possible benefits:

Improves child’s social skills / Safe environment for fun / Interaction with children of different backgrounds / Increase child’s confidence and self-esteem / Broadens child’s experience and skills / Health gain through physical activity

Perceived benefits of holiday play schemes for parents5 point scale of importance for Six possible benefits:

Respite from child care / Improves family functioning by reducing stress / Allows parent to work. Train, study / Personal time for parents/ Allows parents to socialise / Allows time to be spent with other siblings (if relevant)

Summer holiday activities Had a family holiday (Yes / No)

Number of weeks child attended holiday play schemeTypes of schemes suitable for child (tick all that apply)and reasons (open question)

6 scheme types: specialist segregated for children with a single disability, specialist segregated for children with any disability, specialist for children with disbilities and their siblings, specialist integrated, mainstream schemes offering extra support for children with disabilities (active inclusion), mainstream schemes providing reasonable adjustments as required by disability legislation but no additional support for children with disabilities (pseudo inclusion).

Type of scheme best for child

Table 2. Characteristics of parent respondents (N = 141) by disability category of their child.

Variable Category Overall disability category # Significant difference: not disabled vs. all disabled, p value

Not Disabled N = 43

Learning Difficulties N = 9

Complex Needs N = 15

ASD N = 75*

All DisabledN = 99

n % n % n % n % n %

Parent/carer

Gender Female 39 90.7 9 100.0 14 93.3 70 94.6 93 94.9 FE p=.455Age (years) Under 30 2 4.7 0 0 1 1.4 1 1.0

MWU p = .289

30-39 13 30.2 3 33.3 4 26.7 22 29.7 29 29.640-49 27 62.8 4 44.4 8 53.3 47 63.5 59 60.2Over 50 1 2.3 2 22.2 3 20.0 4 5.4 9 9.2

Relationship to child Mother (vs. other)

39 90.7 8 88.9 13 86.7 68 91.9 89 89.9 FE p = 1.000

Living arrangements With partner 30 69.8 6 66.7 10 66.7 57 77.0 73 74.5CS

p = .807Alone 11 25.6 1 11.1 5 33.3 16 21.6 22 22.4With others 2 4.7 2 22.2 0 1 1.4 3 3.1

Number other children < 18 years in household

0 8 18.6 3 33.3 7 46.7 15 20.3 25 25.3 CS p = .389>= 1 35 81.4 6 66.7 8 53.3 60 80.0 74 74.7

Highest level of education

Up to age 18 4 9.3 3 33.3 2 13.3 21 28.4 26 26.5CS

p = .021College/university

39 90.7 6 66.7 13 86.7 53 71.6 72 73.5

Ethnicity White 40 93.0 9 100.0 13 86.7 70 94.6 92 93.9 FE p = 1.000Number of people in household with income from employment

0 5 11.6 0 2 13.3 10 13.5 12 12.2

MWUp = .054

1 16 37.2 5 55.6 9 60.0 42 56.8 56 57.12 22 51.2 4 44.4 4 26.7 22 29.7 30 30.6

Own home (vs. rent) Owner 36 83.7 7 77.8 13 86.7 63 86.3 83 85.6 CS p = .778Child Gender Girl 21 48.8 3 33.3 11 73.3 11 14.7 25 25.3 CS p = .006

Carer reports child disabled

Yes 0 0 7 77.8 15 100.0 66 88..0 88 88.9 CS p < .0005

Disabled for analysis Yes - - 9 100.0 15 100.0 75 100.0 99 100 Not relevantOn LA disability Yes - - 4 44.4 13 86.7 48 64.0 65 65.6 Not relevant

registerComplex needs team treats

Yes - - 2 22.2 11 78.6 16 21.3 29 29.6 Not relevant

Special Educational Needs

Yes 3 7.1 8 88.9 15 100.0 68 93.2 91 93.8 CS p < .0005

Receives Disability Living Allowance Care

Low - - 0 0 2 2.7 2 2.0 LD vs.CN vs. ASD; KW p < .0005

Medium - - 4 44.4 2 13.3 43 57.3 49 49.5High - - 1 11.1 13 86.7 25 33.3 39 39.4

Receives Disability Living Allowance Mobility

Lower - - 2 22.2 0 41 54.7 43 43.4 LD vs.CN vs. ASD; KW p < .0005

Higher - - 3 33.3 15 100.0 17 22.7 35 35.4

Special school Yes 0 2 22.2 14 93.3 34 45.3 50 50.5 CS p < .0005Continuous variables

Categories Mean

(SD)

Median(Range)

Mean

(SD)

Median(Range)

Mean(SD)

Median(Range)

Mean(SD)

Median(Range)

Mean

(SD)

Median(Range)

Age of child Years 7.74(1.87

)

8(4 to 11)

7.56(2.30

)

7(4 to 11)

8.53(2.0)

9(5 to 11)

8.03(2.11)

8(4 to 11)

8.06(2.10

)

8(4 to 11)

T test p=.396

Mean of score for 12 longstanding difficulties

(1 none, 2 low, 3 moderate, 4 severe)

1.04(.11)

1.0(1.0 to 1.6)

2.11(.39)

2.21(1.3 to

2.6)

2.83(.43)

2.78(2.3 to

3.6)

2.22(.49)

2.21(1.1 to

3.4)

2.30(0.52

)

2.29(1.1 to

3.6)T test

p <.0005Ability to participate in 8 activities

(5 point activity scale: 0 independent to 4 unable, range 0-32)

0.35(1.09

)

0(0 to 6)

11.29

(5.32)

12.57(2 to 18)

18.27(5.74)

19.0(9 to 30)

10.14(6.72)

10.0(0 to 28.6)

11.49

(7.04)

11.71(0 to 30) T test

p <.0005

Note. * Data missing for one parent/carer; NS = Not significant#Significance tests: FE = Fisher’s Exact; KW = Kruskal Wallis; CS = Chi Square; MWU = Mann Whitney U; T test = Unpaired t test; LD = Learning Difficulties group; CN = Complex Needs group; ASD = Autism Spectrum Disorder

Table 3. Choice of play scheme: comparison of parents of disabled and non disabled children, (N = 142).Questions about the amount of choice you had when choosing a holiday play scheme for your child

Overall disability category Significant difference: not disabled vs. all disabled, p value

Not DisabledN = 43

Learning Difficulties

N = 9

Complex NeedsN = 15

ASDN = 75

n % n % n % n %

How easy or difficult to obtain information on holiday play schemes?

Very easy 11 25.6 2 22.2 6 40.0 16 21.6Mann

Whitneyp = .63

Easy 23 53.5 1 11.1 4 26.7 24 32.4Neither easy or difficult

6 14.0 5 55.6 4 26.7 24 32.4

Difficult 3 7.0 1 11.1 1 6.7 10 13.5

AccessBarriers(Yes, was a factor vs. not a factor/ not relevant)

Fully booked

Yes 5 11.6 0 0 5 33.3 16 21.3 Chi SqNot

significantToo expensive

Yes 6 14.0 0 0 1 6.7 4 5.3 Chi SqNot

significantToo far/ no transport

Yes 5 11.6 0 0 2 13.3 6 8.0 Chi SqNot

significantOpening hours too limited

Yes 12 27.9 1 11.1 2 13.3 6 8.0 Chi Sqp = .013

Did not take other children

Yes 7 16.3 0 0 0 5 6.7 Chi Sqp = .072

Not available all/ part of holidays

Yes 3 7.0 1 11.1 1 6.7 13 17.3 Chi Sqp = .013

Table 4. Types of schemes that parents thought suitable for their child, by disability category.

Numbers stating scheme type suitable for their child (vs. not suitable)Respondents tick all that apply

Overall disability category Signif Diff. All disabled vs. not disabledChi Sq. p value

Not DisabledN = 43

Learning Difficulties

N = 9

Complex NeedsN = 15

ASDN = 75

All disabledN = 99

n % n % n % n % n %

Specialist segregated -single disability only

2 4.7 7 77.8 11 73.3 66 88.0 84 84.8 < .0005

Specialist segregated - any disability

4 9.3 7 77.8 13 86.7 48 64.0 68 68.7 <.0005

Specialist for disabled child and siblings

6 14.0 5 55.6 6 40.0 42 56.0 53 53.5(72.6

#)

<.0005

Specialist integrated - disabled and non disabled children

31 72.1 7 77.8 7 46.7 41 54.7 55 55.6 .064

Mainstream scheme + extra support for disabled child (active inclusion)

34 79.1 5 55.6 6 40.0 38 50.7 49 49.5 .001

Mainstream scheme - no extra support for disabled child (pseudo inclusion)

39 90.7 2 22.2 0 0 4 5.3 10 10.1 < .0005

Note. # 74 /99 parents (74.7%) reported other children in the household under 18 so the effective proportion considering sibling schemes suitable is 72.6%.

Table 5. Types of schemes that parents thought best for their child, by disability category.

Disability category

N Best scheme for child: n (%)Specialist segregated, single disability

Specialist segregated, any disability

Specialist, disabled child and siblings

Specialist,integrated disabled and non-disabled children

Mainstream + extra support for disabled children (activeInclusion)

Mainstream, no extra support for disabled children (pseudo inclusion)

Non-disabled

43 0 0 0 9 (20.9) 4 (9.3) 30 (69.8)

Learning difficulties

9 1 (11.1) 2 (22.2) 1 (11.1) 3 (33.3) 2 (22.2) 0

Complex Needs

15 3 (20.0) 8 (53.3) 1 (6.7) 2 (13.3) 1 (6.7) 0

ASD 75 46 (61.3) 14 (18.7) 0 6 (8.0) 8 (10.7) 1 (1.3)

Table 6: Reasons given for decisions about the suitability of different types of schemes for parents stating integrated schemes would vs. would not be suitable.

CONSIDERED INTEGRATED SCHEME

Parents of NON-DISABLED CHILD (N=43)

SUITABLE FOR THEIR CHILD

n= 31 (72.1%)

NOT SUITABLE FOR THEIR CHILD

n= 12 (27.9%)Number of commentsMean comments / parent

200.64

60.50

Comments support integrationn=10

Want child to mix with disabled children / will benefit (2)All schemes suitable, child is adaptable (2)Provided disability is mild (2) and staff available to help disabled (1) Has disabled brother so good to have mixed or mainstream play (1)No preference (1)

We get on with people from all walks of life (1)

Comment against integration n=16

Child has no disability and doesn’t need specialist scheme (9)Where daughter feels happiest (1)Severely disabled children can frighten non disabled children (1)

Child has no disability and doesn’t need specialist scheme (5)

Parents of DISABLED CHILD (N=99)

CONSIDERED INTEGRATED SCHEME SUITABLE FOR THEIR CHILD

n= 55 (55.5%)

NOT SUITABLE FOR THEIR CHILD

n= 44 (44.4%)Number of commentsMean comments / parent

430.78

340.77

Comments support integrationn =5

Wants ‘normal’ child as role model(2)

Bright child/ condition mild – mainstream good for learning and better range of activities(3)

Comment against integration n =72

Child could not cope mainstream, noisy etc. (11)Child needs extra support (10)Other children will not understand (disability) (4)Child has difficulty socialising, won’t fit in (8)Need trained staff (4)Activities will not be suitable (1)Safety concerns (3)

Child could not cope mainstream, noisy etc. (4)Child needs extra support (8)Other children will not understand (disability) (4)Child has difficulty socialising, won’t fit in (4)Need trained staff (6)Activities will not be suitable (3)Safety concerns (2)

Figure 1: Factors affecting choice of holiday scheme, comparison of parents of disabled and non disabled children (with Mann Whitney U test p value for each factor)

Figure 2: Perceived benefits to child of attending holiday play scheme, comparison of views of parents of disabled and non disabled children (with Mann Whitney U test p value for each factor)

Figure 3: Perceived benefits to parents of attending holiday play scheme, comparison of views of parents of disabled and non disabled children (with Mann Whitney U test p value for each factor)