organising habilitation services: team structures and family participation

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Child: Care, Health and Development © Blackwell Science Ltd Organising habilitation services: team structures and family participation M Larsson Department of Psychology, Lund University, Lund, Sweden Accepted 12 December 1999 Summary This study is part of a project focusing on co-operation between receivers of habilitation services (families) and professionals. The study focuses on the organisation and co-ordination of the services, and compares two structures for their accomplishment. The first is the typical multiprofessional habilitation team (MHT), and the second is the individualised team (ISP). MHT teams are organ- ised within the habilitation agency, while ISP teams span institutional bound- aries. An ISP team is formed around the individual child who receives services from the habilitation centre, and includes parents (sometimes the child), pro- fessionals from the habilitation centre, and professionals from other service- providing institutions that are actively involved (for instance pre-school teacher, schoolteacher etc.). The team maps child and family needs, organises assess- ments and services and formulates goals that subsequently are monitored and followed up. A questionnaire (Measures of Processes of Care) was used to assess the experiences of 385 service receivers. The questionnaire focuses on service receivers’ experiences of the family-centredness of the service, opera- tionalised in 56 items, along with five items concerning perceptions of level of control over service provision. The experiences of families having individualised teams were compared to those not having these teams. Significant differences were obtained, suggesting the impact of the form of service organisation on the content. Families having ISP teams report both more family-centred service, and a greater level of control over service provision. Results are discussed in terms of organising structures and co-ordination of services, and in terms of family participation. Correspondence M Larsson Lic. Psychologist and Doctoral Student Department of Psychology Lund University Paradisgatan Lund Sweden magnus.larsson@ psychology.lu.se

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Child: Care, Health

and Development

© Blackwell Science Ltd

Organising habilitation services: team structuresand family participation

M LarssonDepartment of Psychology, Lund University, Lund, Sweden

Accepted 12 December 1999

Summary

This study is part of a project focusing on co-operation between receivers of

habilitation services (families) and professionals. The study focuses on the

organisation and co-ordination of the services, and compares two structures for

their accomplishment. The first is the typical multiprofessional habilitation team

(MHT), and the second is the individualised team (ISP). MHT teams are organ-

ised within the habilitation agency, while ISP teams span institutional bound-

aries. An ISP team is formed around the individual child who receives services

from the habilitation centre, and includes parents (sometimes the child), pro-

fessionals from the habilitation centre, and professionals from other service-

providing institutions that are actively involved (for instance pre-school teacher,

schoolteacher etc.). The team maps child and family needs, organises assess-

ments and services and formulates goals that subsequently are monitored and

followed up. A questionnaire (Measures of Processes of Care) was used to

assess the experiences of 385 service receivers. The questionnaire focuses on

service receivers’ experiences of the family-centredness of the service, opera-

tionalised in 56 items, along with five items concerning perceptions of level of

control over service provision. The experiences of families having individualised

teams were compared to those not having these teams. Significant differences

were obtained, suggesting the impact of the form of service organisation on the

content. Families having ISP teams report both more family-centred service, and

a greater level of control over service provision. Results are discussed in terms

of organising structures and co-ordination of services, and in terms of family

participation.

Correspondence

M Larsson

Lic. Psychologist and

Doctoral Student

Department of Psychology

Lund University

Paradisgatan

Lund

Sweden

magnus.larsson@

psychology.lu.se

Keywords: disabled children, habilitation services, service co-ordination, service

integration, family participation

Introduction

Service for families with disabled children

Provision of care and services to families with disabled children is a task thatnormally involves many professions and agencies, and that can be performedin a multitude of ways. Two aspects that have received attention in the litera-ture are the role of the family, and organisation and possible integration of ser-vices.

The role of the family has been discussed in terms of participation in as-sessment and decisions regarding interventions (Dunst, Trivette & Deal ;Simeonsson & Bailey ; Trivette et al. ) and in terms of models forparent partnership (Appleton & Michom ; Appleton et al. ). The dis-cussions focus on the degree to which the family or the parents are involvedin constructing and identifying ‘needs’ and foci for services, on standardisationversus individualisation of service design, and on the degree of latitude forparents to choose style and content of services and of involvement.

In recent years, the consensus supports a family-centred model. Focus is onempowerment of families (e.g. Trivette et al. ; Turnbull & Turnbull ),stress reduction by flexible collaborative alliances (King et al. ) etc. Thisfocus is also consistent with the demands of the international disability move-ments and the UN standard rules for disability.

The actual service is normally implemented through multiprofessional teamsin one or more agencies. Bailey () discussed the organisation of this serviceimplementation in terms of the internal structure of the team, differentiatingbetween multi-, inter- and transdisciplinary modes of team functioning, a con-ceptualisation that subsequently has been widely used. Another aspect, that hasreceived increasing attention in the literature, is the co-ordination or integra-tion of services. Many authors have noted the multitude of professions andagencies engaged in services to disabled children and their families (see Harbin& Mcnulty ; Harbin ; Roberts et al. a; Behl et al. ; Westonet al. ) with a considerable risk of service fragmentation (for the situationin Sweden: see Janson ; Högberg ). Authors recognise the problemsof and obstacles to co-ordination (Harbin ) and the need for integration

Larsson • Organizing habilitation services

Child: Care, Health

and Development

© Blackwell Science Ltd

at various levels and with various forms and foci (Kagan et al. ; Robertset al. a,b; Weston ).

However, in the discussions of family roles, the different models or para-digms are mostly unrelated to the organisational context of service delivery.For instance, Appleton & Michom () discuss four models of parent part-nership and their possible implementation in one and the same organisationalstructure without much consideration of the question of the compatibilitybetween the structure and the various models. Likewise, in discussions aboutservice integration the issue of the impact of reorganisation on family empow-erment, participation, opportunity to take responsibility etc., is mostly lacking.

It will be argued in this paper that there is an important relationship betweenthe way services are organised and the possibilities for family involvement andparticipation, and the argument will be based on an empirical exploration ofsome aspects of this relationship.

The service-providing system

The service providing system surrounding a family with a disabled child canbe considered as generally ‘loosely coupled’ (Weick ; Orton & Weick ).It consist of a number of agencies, persons and types of services (habilitationcentre, other health care institutions; normal pre-school education, special edu-cation, physical therapy; pre-school or school etc.) between which there mayor may not be much interaction. Usually one or more teams manage and organ-ise all or some part of the service concerning a specific family. The team con-stitutes an instance of ‘tighter coupling’ between the participating membersand agencies.

The teams may be structured in different ways regarding agency boundaries.Teams can be organised within one agency (intra-agency), such as multidisci-plinary child development teams within a child development or habilitationcentre. Or teams can span agency boundaries, and include participants fromtwo or more agencies (inter- or multi-agency).These boundary crossing teamscan be concerned with policy making issues, boundary management (i.e.,deciding from which agency a specific family should receive intervention), ordirect case management.

It is only within the multi-agency model that the team can adress the taskof boundary management in the total system (co-ordination, prioritisation,etc.); otherwise that task is left to the family, being the only part that is con-nected to all other parts.

Larsson • Organizing habilitation services

Child: Care, Health

and Development

© Blackwell Science Ltd

Purpose of study

The study presented here is a part of a study of collaborative processes betweenrecipients of care and habilitation services and the professionals providing theservice. The work presented here focuses the relation between structural con-ditions for service management and the recipient’s experiences of the servicegiving process. This is done through a study of two different structural condi-tions: an intra-agency team, compared with a multi-agency team managing theservice for a specific family.

Following the earlier argument, the main hypothesis concerns the relationbetween structure in terms of management of agency boundaries and familyparticipation and control. It is hypothesised that family control increases withmore transgression of agency boundaries, and the more the team has the pos-sibility to take service management in the entire system as its task.

The service-providing structures

The study utilises the opportunity given by two structural arrangements co-existing at one habilitation centre in the south of Sweden. These two arrange-ments are:

A traditional multiprofessional habilitation team (MHT), which means an intra-agency team, consisting of all professional categories (medical doctor,psychologist, physical therapist, occupational therapist, speech therapist, socialworker, special pedagogue etc.).This team organises assessments and managesthe services provided to the family by the habilitation centre. There is co-operation with other agencies on an individual level. The family and the child are present on one or two occasions each year, when the situation isreviewed.

The second arrangement is a model for individualised service management.The model (Individualised Service Programs, ISP) was developed in Swedenin (Sjögren ; Larsson et al. ). Its primary features are the for-mation of an individualised team centring on the child and family, and theinclusion of people regardless of organisational boundaries.

At the core of the ISP model are four fundamental principles:

• Accessibility• Participation/influence• Comprehensiveness• Continuity

Larsson • Organizing habilitation services

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and Development

© Blackwell Science Ltd

These fundamental principles are implemented by the construction of a‘team’ surrounding the child and the family (multi-agency model). In this waythe family is guaranteed presence at all discussions and at all planning and co-ordination of the service.

The actual work in this team is guided by the theoretical foundation of theQuebec revision of the ICDH (CSICIDH ). This definition of disabilityand handicap focuses on the relationship between a disability and a concretesurrounding environment, creating a handicapping situation. Handicap isdefined as a situation where a person cannot do something he/she wants to do(that it would be ‘normal’ to be able to do), because the situation demands useof the functions that are impaired.

This definition of handicap is used to map handicapping situations in theeveryday life of the child and the family. These are used as starting points toconstruct relevant services, which could be directed at the person, at the envi-ronment (physical or social) or at the interaction between them.The definitionthus works to anchor the construction of services in needs and problematic situations in the everyday life of the child and the family, counteracting thedefining power of the professionals. It is also to be noted that the use of thehandicap level forces professions to work on ‘common ground’ (the profes-sional domains are on the impairment and disability levels), fostering an inter-disciplinary style of role division.

Team composition also follows the same principle of starting with the needsof the child and family. Participants are chosen and invited based on their rel-evance to the actual needs as they emerge in the mapping mentioned above,rather than ‘by default’, and regardless of agency boundaries. As a conse-quence, the team has no formal authority other than that of the participatingindividuals, necessitating negotiation as decision making process.

Lastly, the model prescribes goal-directed interventions, and it is the task ofthe team together to formulate the relevant goals, and assign tasks accordingly.These goals are monitored and followed up in the team as well.

At first contact, the service of all children at the centre is managed throughthe MHT, and an ISP may be constructed at any later time. Allocation of children and families to the ISP condition is made mainly on a pragmatic basis, i. e. considering the urgency of co-ordination needs present work situa-tion of staff, timing in regard to other cases, etc.Type of disability, age of child,family structure etc. are not considered important variables in the allocationprocess.

The two service-providing structures are similar in that it is the same habil-itation staff working under both conditions. They differ in regard to agency

Larsson • Organizing habilitation services

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and Development

© Blackwell Science Ltd

boundaries and family presence.The MHT is an intra-agency team, thus witha low family presence, while the ISP is a multi-agency team with a high familypresence.

The coexistence of these two structures is the result of a change process,where the ISP has been introduced and at was planned to fully substitute forthe MHT. However, how far this process will be taken and what will eventu-ally be the mix of models for service delivery is at present unclear.

Method

The Swedish version of the Measures of Processes of Care

To assess the families’ experiences of services, the Swedish translation of theMeasures of Processes of Care (MPOC) (King et al. ; for Swedish versionsee Bjerre et al. ) was used. It is a -item questionnaire, with the itemsforming five scales: Enabling and partnership; Providing general information;Providing specific information about the child; Co-ordinated and comprehen-sive care for the child and family; and Respectful and supportive care. Thisinstrument has been shown to have sound psychometric properties (regardingthe Swedish version, see Bjerre et al. ), and has been shown to differenti-ate between different ways services are provided (King et al. ).

An example of the items is given below. The respondent is asked to mark anumber between (to a great extent) and (never), or if the item is notapplicable.

In the past year, to what extent do the people who work with your child . . .. . . tell you about the reasons for treatment or equipment?

Further, five items concerning the level of control over the service, experi-enced by the recipient, were added as a measure of participation. These itemsfocus on different aspects of the service provision (for full formulation, seeTable ), and the respondent is asked to assess level of control with a valuebetween (to a great extent) and (not at all).The questionnaire also includeda number of questions concerning background variables (age of child, relationbetween respondent and child, child’s disability, etc.).

Sample

The sample of recipients was drawn from the register of patients at the habil-itation centre. It consists of two parts. First all families having an ISP was

Larsson • Organizing habilitation services

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and Development

© Blackwell Science Ltd

chosen ( families). Secondly, a randomised sample of patients having MHTwas drawn ( families). This yielded a total sample of families. Bothsamples received their services from the same centre, and all professionals atthe centre work under both conditions.

Administration

The questionnaire was sent by mail together with a letter from the unit managerand a stamped return envelope. After the initial letter, two reminders were sent,both with a new copy of the questionnaire. All questionnaires were coded witha number, and confidentiality was guaranteed for all answers.

Results

Respondents

Questionnaires were returned, or a reason for not returning it was obtained,from families (.%). From the ISP subsample were returned (.%)and from the MHT subsample (.%). Of these, were sufficientlycompleted to be included in further analysis.

ANOVA for the age of the children was conducted comparing the respon-dent group and the population, from which the sample was drawn. No sig-

Larsson • Organizing habilitation services

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Table Scores on items concerning experienced level of control for families with ISP and MHT.

To what extent have you, during thelast year, been able to exerciseinfluence/control on n Mean SD F df P

When you and/or your child have met staff? ISP 90 4.17 0.95 17.841 199 0.000MHT 110 3.40 1.49

Who has participated in these meetings? ISP 90 4.30 1.02 31.731 199 0.000MHT 110 3.15 1.69

Which goals have been set up? ISP 89 4.31 1.00 28.581 198 0.000MHT 110 3.26 1.62

Which interventions have been made? ISP 89 3.97 1.04 15.827 197 0.000MHT 110 3.21 1.53

The way you and your child have received ISP 89 3.96 1.19 18.951 198 0.000service and interventions? MHT 110 3.06 1.61

ISP = individualised team; MHT = multiprofessional habilitation team.

nificant differences were found (F=,, P=,). Similar analyses regardingtype of disability and first language could not be carried out, because of lackof reliable information for the population.

The age distribution of the children is shown in Table .The questionnaireswere mainly answered by the mothers of the child (%), mother and father(.%) or father (.%). Of respondents reporting their first language,Swedish was reported in %, with the remaining % distributed among six other languages frequently spoken by immigrants (%), and unspecified‘other’ language (%).

The disabilities reported by respondents (Table ) represent all the majorcategories served by the habilitation centre. Each respondent could mark anynumber of disabilities from a list of eight specified and a final category ‘other’.The average number marked was ..

The mean age of the children in the two subsamples of ISP and MHT (the

Larsson • Organizing habilitation services

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Table Age distribution of

respondent’s children

(n=)

Table Distribution of dis-

abilities reported by respon-

dents (respondent may mark

any number of categories)

Age n %

0–7 83 41.58–14 86 43.015–21 25 12.5≥ 22 1 0.5– 5 2.5Total 200 100.0

Frequency

Disability ISP MHT Total

motor disability 33 39 72mental retardation 35 43 78muscular disorder 5 5 10vision impairment 13 12 25hearing impairment 5 3 8speech-language disorder 40 44 84attention disorder 42 31 73autism 9 3 12other 18 21 39

ISP = individualised team; MHT = multiprofessional habilitation team.

cases included in further analysis) were . and . years respectively. The difference failed to reach significance (t = -., df = , P = ., two-tailed)

The respondents were asked to indicate the type of disability or disabilitiesof the child out of eight specified and one open alternative. It was possible tomark any number of eight specified disabilities, and an alternative called‘other’. The were analysed with Chi-square and Cramer’s V, showing one typeof disability (mental retardation) to be significantly more frequent in the ISPsubsample (Fisher’s Exact, P = .).

Reliability

The internal consistency of the five MPOC scales was high for four of the fivescales, leaving one scale with an unsatisfactorily low value (Cronbach’s alpha,Table ).This scale, ‘Providing specific information about the child’, will there-fore not be made use of in the further analyses.

The five items concerning experienced control also show high levels of cor-relation, ranging from . to .. For the sake of clarity, however, theywere considered as separate items in the analysis and presentation.

Multiprofessional habilitation and individualised teams

A comparison between the scale scores of families reporting an ISP-team andfamilies with MHT, shows some significant differences (one-way ANOVA, seeTable ).

On three out of the four scales with acceptable internal consistency, signif-icant differences are determined. Services with ISP is reported as more family

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Table Reliability of the Measures of Processes of Care scales (Crobach’s alpha).

Scale Items Cronbach’s alpha

1. Enabling and partnership 16 0.932. Providing general information 9 0.903. Providing specific information about the child 5 0.714. Co-ordinated and comprehensive care 17 0.935. Respectful and supportive care 9 0.91

centred (significantly higher scores on Enabling and partnership; Co-ordinatedand comprehensive care; and Respectful and supportive care).

A comparison of the reported levels of control gives the results shown inTable . On all five items, the level is significantly higher for families with ISPs,compared to those with MHTs.

Discussion

This study show significant differences between two types of service organisa-tion for families with a disabled child, in at least three out of four aspects offamily centredness of service, and in parents’ perceived level of control overservice provision.

The study suffers from a non-response rate of more than %. Further,there is a slight difference in the types of disability served by the two types of structure. These facts threaten the validity of the results. The validity is somewhat strengthened by the analysis of the representativity concerning ageof repsondents’ children. Earlier experiences at the same location also suggestthat the primary reason for non-response is too little contact with the centre,rather than specific experiences related to the dimensions measured here(Larsson et al. ; Bjerre et al. ). Still, in generalising the results, carewould need to be taken to consider whether the differences established hereonly applies to a subpopulation of the families receiving services, perhaps characterised by relatively much contact, or whether service structures

Larsson • Organizing habilitation services

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© Blackwell Science Ltd

Table Scores on the Measures of Processes of Care scales for families with ISP and MHT*

Scale m s n F df P

Enabling and partnership ISP 5.56 1.16 90 8.930 199 0.003MHT 4.98 1.52 110

General information ISP 3.83 1.70 90 2.661 199 0.104MHT 3.42 1.82 110

Co-ordinated and comprehensive care ISP 5.62 1.09 90 11.611 199 0.001MHT 4.99 1.45 110

Respectful and supportive care ISP 5.94 1.05 90 7.911 199 0.004MHT 5.44 1.41 110

*One scale, ¢Providing specific information about the child’, omitted due to low internal consistency.

ISP = individualised team; MHT = multiprofessional habilitation team.

affect families differently depending on the child’s disability. Further studieswould be needed to clarify this, before any more conclusive statements aremade.

One of the strengths of the study design is that it is the same professionalsproviding the services under both conditions. This eliminates the influence ofindividual characteristics on the reported experiences (i.e., the influence ofselection of service providers as a threat to validity; Cook & Campbell ),as well as ideological influences (the individuals are assumed to hold the sameideology whichever form they for the moment implement).

Bearing in mind the limitations of the study, the results still indicate that theway services are organised makes a difference for the recipient’s experiences.It is noteworthy that what has been measured is not satisfaction. The MPOCis designed to measure experiences of concrete situations and actions by pro-fessionals, and not how content or satisfied families are. The scale is shown tocorrelate with measures of satisfaction (King et al. ), but the conceptualdistinction between satisfaction with and experiences of services is worth sustaining.

The difference in experience could be understood in terms of the wayinstances of ‘tight coupling’ (i.e. teams) are structured in an otherwise veryloosely coupled system. Initially it was hypothesised that control would be facil-itated in boundary transgressing teams, since these have the capability to workwith service design and management in the system as a whole.The results givesupport to this hypothesis.

On a more concrete level, the differences indicate that certain actions areperformed and certain situations are occurring more often under one condi-tion than under the other (the actions and situations specified in the MPOC).However, these actions and situations are quite general, and not specific foreither of the two forms. It seems that the forms differ in the way they facilitateor prompt the performance of these actions. Forms controlling their premises(Perrow ) influence the actions.

Formulated in terms of roles, the ISP model seems to afford a family rolecharacterised by more control over service design. Likewise, the professionalsseem to act in more collaborative and enabling roles. Assuming that profes-sionals hold an ideology of family centredness, the ISP could be understoodas better facilitating the implementation of this ideology through the affordedrole division.

These differences are assumed to arise from the phenomena of transgres-sion or non-transgression of agency boundaries. However, the two models alsodiffer in the degree of family presence. This could be considered an aspect of

Larsson • Organizing habilitation services

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and Development

© Blackwell Science Ltd

boundary transgression, and is a necessary part of the ISP model (withoutparents the professionals have limited rights to share information across agencyboundaries), but is also a phenomenon worth more study in its own right.Unfortunately, that goes well beyond the scope of the present study.

It is also clear that there are many other factors contributing to the families’perceptions of service provision. However, through the design of this study, anattempt has been made to somewhat isolate the influence of structure onservice providing relationships, and to explore the usefulness of organisationalknowledge for the understanding and development of services.

Conclusions

Two points lie at the heart of the argument in this paper. First, it is impliedthat to understand the role of both service providers and family it is helpful to consider the total service-providing system. Here this system has beendescribed as loosely coupled, with different kinds of more tightly coupledteams. Second, rather than just focusing on the internal interaction in the teams that design and manage service, it might be helpful to consider how they are structured; that is, how they relate to the whole system, and if theytransgress agency boundaries. The structure of these teams or ‘arenas forservice management’ could have a significant impact on the actual servicedelivered.

Both these points have implications for the implementation of service. Tochange the roles and relationships between families and service providers, it isnot enough to educate professionals more, or design better models for servicesand service delivery. The system and the structures in which professionals tryto realise their visions and values, and to make their knowledge and expertiseavailable for the family, needs to be considered, managed and developed. Toimplement new roles, compatible structures might have to be constructed.Thiscalls for organisational knowledge and managerial competence and for moreresearch from an organisational perspective.

Acknowledgements

The work presented here was made possible through generous grants fromAllmänna Barnhuset, Stiftelsen Solstickan, and Förstamajblommans Riks-förbund. The author would like to thank Dr Richard Roberts, Dr Peter

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Rosenbaum, and Dr Ingrid Bjerre for helpful comments on earlier drafts of themanuscript.

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