CHILDREN & SOCIETY (1990) 4:l 28-34

Honevlands n J

service tor developing a

families with children with disabilities and

special needs PHILIPPA RUSSELL

Introduction What does it mean to this person to have this handicap; At this time in his or her life; With these care-givers; In this environment; In this locality; With this peer group; And with these professionals: (Professor Joan Bicknell, Right from the Start, 1981.)

HE birth of any child can be a frightening as well as a happy event for the T family concerned. Parenthood brings new responsibilities and concerns, as well as pleasures. When the new baby has a disability or any special need, the initial diagnosis may devastate the parents. Research clearly demonstrates the need to recognise the impact of disability on parental expectations and self-image, but confirms that active support and appropriate services can minimise trauma and dramatically improve parental acceptance of and enjoy- ment in their child.

Honeylands developed as a family support from the strong conviction that families with children with disabilities needed assessment, treatment and support through an integrated service, designed to meet clearly ascertained needs, which fully involved parents in the care and development of their child

28

HONEYI.ANIX I)EVEI.OPING A SERVICE FOR FAMILIES

and which offered access to a wide-range of services through a single access point.

The service has attracted international attention, but its very success has inhibited many existing services from adapting and using the model. Honeylands offers a positive example of how a complex range of services can be orchestrated in the best interests of children and families. It acts as a bridge between a wide-range of other services, providing an integrated approach to individual needs. At a time of major reorganisation in child health services and in terms of the Children Act’s impact on local authorities, Honeylands stands out as a service with a specific service design: with clear policies and infrastructures and with constant prof-essional and consumer evaluation. However, its success has to be put in the context of changing attitudes to all provision for children with disabilities and to its capacity to meet the needs of families into the 1990s.

Honeylands shows the importance of not only involving the whole family in treatment, counselling and support, but also of the necessity to avoid assuming that stable local communities and extended families will automati- cally support parents with a handicapped child. Pahl and Quine (1984), in looking at services in Kent, emphasised the need to recognise whole family dynamics when recommending treatment. The Honeylands evaluation similarly found that a ‘holistic’ approach was impossible without a recognition of the emotional and practical needs of grand-parents and siblings. As the Carraigfole team (Barnardo’s Irish Division, 1984) concluded after their first two years: ‘we learned as the months went by that the unit should be a ‘yamily support” unit in the widest possible sense’. Such family support will require effective coordination: communication and mutual respect between and with professionals and services in the community.

Early intervention and family support: towards partnership with parents Recent Government reports have highlighted the need to encourage active partnership with parents - for the benefit of the family and of the child. Home teaching programmes like Portage have demonstrated how effective parents can be as educators. Partnership, however, cannot be assumed to be present simply because professionals are working with parents.

The Honeylands home therapy programme, which provided a named ‘home therapist’ (drawn from a variety of backgrounds) for families with young newly diagnosed children with developmental delay or disability, has clearly shown the importance of partnership with parents. The existence of a sensitive, supported and well informed home therapist not only helped parents to be more pro-active in making positive links with their friends, family and

29

PHILIPPA RUSSELL

local community, but also ensured more effective delivery of services from professionals. The programme clearly showed the protracted timescale of adaptation for disability by many parents and the need to provide continuous support. As the original survey of consumer needs revealed, parents needed far more specific information about the nature of their child’s difficulties and about the available services than was normally provided. Parents wished to have a practical and active participation in caring for their children, but many needed emotional and practical support to exercise such a role. The period immediately after diagnosis was felt to be a period of high anxiety, with parents refusing services they considered to be of poor quality - without counselling - which they felt to be stigmatising or more disabling for their child. On-going evaluation of Honeylands suggests that the first time parents use a specialservice may represent a major hurdle and that non-use of services may reflect ambiguity and depression about becoming a ‘special’ parent.

A particular attraction of the Honeylands model for parents is that it co- ordinates a range of services which parents may use incrementally as they please. A parent of a young child could use the playgroup with a range of developmental activities; day-care as required (siblings also using this service in the holidays) and the residential respite care service ‘on demand’. The evaluation clearly reminds us of the importance of a ‘settling in’ process for new parents and the importance of involving parents in the planning and co- ordination of services.

However, ‘partnership’ is not without problems. Some families have particular personal, social or other circumstances which may produce anxiety if maximum involvement is impossible. Family illness, unemployment, pressures from family members or marital difficulties may all create barriers. The leaelof involvement will vary from family to family. Whilst parents have clearly moved away from the ‘client’ role, some parents may need support - and time - in order to become partners. Tony Dessent (1985) for example, notes that ‘parentology’ has become ‘the latest bandwagon within the pro- fession of educational psychology’. Whilst parents must and do have a very special role, he argued that the shift to ‘working with parents’ must be put in the context of the family’s own resources and abilities. Partnership in the end will depend upon the creation of a genuine dialogue, based upon mutual trust but recognising differences. Recognising differences may be painful: parents may be labelled ‘passive’, if they are as yet unresolved about what they want for their child; they may be peripheral to decision-making if they are not given information or helped to express their views. They are consumers - but they may expect to have to act as patients. Many parents will have coped by ‘over- coping’. Poor levels of support services may not only lead to low expectations but provide poor training for a more positive role.

In order to assess parents’ views of services (and the degree of parental

30

HONEYLANDS: DEVELOPING A SERVICE FOR FAMILIES

stress about such services) Honeylands has both evaluated family stress amongst service users and invited three mothers of children with disabilities to provide a parent perspective and consumer view of the home therapy programme. The parental responses matched those of the stress assessment and indicated the importance of acknowledging family needs when developing packages of care for a particular child.

The parental evaluation emphasised that: i . In the early days parents may have hopes and expectations which

professionals feel unrealistic. But this ‘unreality’ reflects a normal and appropriate yearning for thc child to be ‘cured’ and for the problem to disappear. Hopes of a miracle should be replaced gently by realistic attitudes to the future.

ii. Parents may need confirmation of their ability to cope. Feelings of inadequacy are common.

iii. Parents need a ‘problem solving’ service immediately - not months after the difficulty has arisen.

iv. Other family members and friends may not be supportive. Adverse reactions in a local community may have devastating effects which also need intervention and support. Some home based help is crucial - many problems only arise in the home - and such services can involve fathers and other family members. They break the ‘front of efficiency’, but there are ethics of intrusion and home visitors must be compatible with family life.

vi. Parents need information about other sources of help. As the OPCS studies (e.g., 1989) confirm, many parents lack support because they do not know how to get it.

Working in a more flexible and ‘out-reach’ way is not easy for pro- fessionals. The Honeylands model of conscious mutual help and support for professionals has played a key role in facilitating parents. The Honeylands principle is similar to that of the Portage Home Visiting Scheme, namely to provide multi-disciplinary support and regular feedback for all home thera- pists or visitors. As Davis and Cunningham (1985) have noted: ‘. . . partner- ship is a relationship in which the professional seruices work with the parenls by making appropriate expertise available to them’. The relationship is therefore one of ‘complementary expertise’ since the expert knowledge of the parents themselves, their family support systems and cultural and social expectations, will complement what the professionals can offer. Good services for children - involving negotiated individual programme plans and agreed collaborative procedures between professionals - will not only maximise the child’s development, but establish important principles for subsequent services for adults. Such partnership as demonstrated at Honeylands will also necessitate

v.

31

PHILIPPA RUSSELL

wider patterns of organisational learning, inter-professional training, explicit philosophies and policies and clear criteria for assessing progress.

Organisational issues in early intervention and support services The move to more dispersed local services for children with disabilities has created a tension in terms of services delivered primarily from a central focus (such as a child development centre) or the concept of a team based approach which provides few services at its home base. Centre based services have always been part of provision for the wider range of under-fives. As Pugh (1988) indicates, centres such as combined nursery centres and children’s centres have always highlighted the possibilities as well as the problems of a co-ordinated or integrated service. They can offer great flexibility and coherence, with the proviso that funding, management and support systems may operate separately even within a centre and prevent the emergence of a coherent service based on children’s individual needs.

The best known of the centre-based services for children with disabilities is Honeylands, based at the Royal Devon and Exeter Hospital (Brimblecombe and Russell, 1987). It has frequently been argued that the Honeylands model cannot be replicated because of the particular constellation of services and resources which it could attract through its designation as a children’s hospital. In practice Honeylands has always been a team service and the model could be developed within a child development centre, voluntary agency, educational provision or community health facility provided that the inter- disciplinary professional resources were willing and able to work from that base. An important lesson to emerge from the evaluation of Honeylands (Brimblecombe and Russell, 1987) and of a Kent Health Authority unit in the Medway (Pahl and Quine, 1984) is that the existing ‘core staffing’ of a centre can change and develop their roles to new ways of working. Both Honeylands and Preston Skreens in Kent are primarily staffed by paediatric nurses, but the nursing role has changed dramatically as nursing staff have additional training and support in developmental and educational activities. They liaise directly with a wide range of professionals and they work closely with individual families.

The Honeylands evaluation has indicated a number of pre-requisites for changing and developing traditional staffing roles, and relationships with wider community services.

i. A multi-professional team which corporately plans (also with parents) what a child need and wants.

ii. Staff training and development opportunities, with a review of methods of working. At Honeylands individual staff members all have a ‘key worker’ role to select families.

32

HONEYI.ANDS: DEVELOPING A SERVICE FOR FAh1II.IES

... 111.

iv .

V.

vi.

Regular systems of re-assessment and review. Conscious nurturing of a team ethos, with support for team members when there are conflicts of opinion or difficulties with particular children. A willingness to work outside the centre and to involve outside staff within the centre in order to ensure effective transition to other services. The acknowledgement that a whole child, whole family, whole unit approach means including everyone on site within the team. Ancillary workers and cleaners, volunteers and parents all have a unique contribution to make. As the Kings Fund Centre report Ties and Connections (1989) emphasises, relationships with professionals and the wider community need identifying and nurturing right from the start. The concept of ‘community’ is often ill defined, and may be undefinable. But for young children with disabilities, friendships within their local communities should be an additional and integral part of professional service development.

Honeylands has always adopted a complementary rather than com- petitive role to existing community based services and has, in particular, worked closely with community nursing services (including health visitors), district handicap and community mental handicap teams and with the school health services as well as with the local education authority and social services. It has endeavoured to involve general practitioners but has found this to be more difficult. The existence of a single focal point for all services for young handicapped children and their families has enabled community health, social services and educational provision to be better informed about referrals of young children with special needs and also to encourage parents to utilise existing services. The Fish Committee (1985), looking at the special educational provision within the Inner London Education Authority area, noted the particular importance of the child development or district handicap teams as a focus for effective assessment and placement.

Such a base also helps to overcome the problems of inter-professional confidentiality which cause difficulties in exchanging information between agencies. Such anxieties about confidentiality often infuriate parents, who note the fragmentation and fear what they see as collusion in secrecy about their child. The Fish Committee commented that:

. . . exchange of information seemed easier from within the specialist assessment centres . . . parents had less difficulty in participating in assess- ment procedures and seemed more likely to feel confidence in (and to know by name) the professionals working with their child.

3 3

PHILIPPA RUSSELL

Honeylands, although hospital based, has always maintained an ‘outreach’ service encouraging community based professionals to come in to the unit and referring back to community provision as soon as possible. A number of children with significant difficulties who attended Honeylands have been able to attend ordinary schools with continuing support and advice from Honeylands about their management.

The development of effective team strategies for meeting the needs of handicapped children and their families is still a new phenomenon. The Social Services Inspectorate’s report (1984) found the teams could vary widely in membership and function:

Many teams were still in their infancy and had yet to prove themselves. Teething troubles seemed less related to internal tensions than to concern about availability of resources for the team.

Conversely, the same report found a wide range of successful team approaches in very different settings.

The SSI report concluded that successful multi-disciplinary teams and centres must have clearly defined roles with particular reference to questions of accountability, other relationships with employing authorities, access to resources, and links with specialist and generalist facilities. The Honeylands evaluation also indicates that successful teams must offer mutual support and constantly review policy and practice and see change and development as a dynamic process.

References Barnados Irish Division (1984) Report on the Carraigfole Paedianic Support Unit Brimblecombe, F.S.W. and Russell, P. (1987) Honeylands: DevelopingaService forFami-

Davis, H. and Cunningham, C. (1985) Working with Parents: Frameworks for Collabor-

Department ofHealth, Social Services Inspectorate (1 984) LocalAuthon’ty SocialServices

Dessent, T. (1985) ‘Parentology: a critique, Educational and Child Psychology, special

Fish, J. (1985) Equal Educational Opportunities for All? London: ILEA. King’s Fund Centre (1989) Zies and Connections. Ofice of Population and Census Surveys (1989) Disabbd Children, Services, Transport

and Education, Paper 6 . London: HMSO. Pahl, J. and Quine, L. (1984) Families with Mentally Handicapped Children: A Study of

Stress and Service Response. Health Services Research Unit, University of Kent. Pugh, G. (1988) Services for Un&r-Fives: Developing a Coordinated Approach. London:

NCB.

lies with Handicapped Children. London: National Children’s Bureau.

ation. Open University.

for Handicapped Children: Schemes and Developments in England.

issue Working Wth Parents 2( 1).