Sustaining the Family: Meeting the Needs of Families of Children with Disabilities

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Sustaining the family: Meeting the needs offamilies of children with disabilities

Barry Carpenter

The impact of disability on familiesDo professionals have real insights into how the birth of,and life with, a child with a disability impacts on familylife? At times, they may assume that they know whatfamilies need, but do not understand the range of emotionsexperienced. Manuel (1996), a parent, states:

‘What is often not recognised is that mums and dadsand brothers and sisters have love for the child. Theydon’t necessarily want to abandon that child.Because it’s their child.’

(p.2)

In our civilised society, the term ‘abandon’ may seeminappropriate, but examples can still be found of situationswhere parents were put under pressure to relinquishresponsibility for their children. Jan and Dave recall howtheir baby, Sarah, contracted meningitis when she waseight days old and, after spending three months inintensive care, she was left with profound and multipledisabilities. Two professionals saw them before they tookSarah home: one talked of disability benefit allowances(for which Sarah was not eligible until she was mucholder); the other of immediate respite care for whateverperiod the parents chose. As Jan retorted:

‘This is my baby. I look after my baby. I am notgiving up my baby to anyone.’

(Personal correspondence)

The professional approaches were insensitive and ill-timedas they did nothing to enhance their quality of life orparenting confidence.

Despite everything that has been written about supportingfamilies over the past decade, their needs are still not met.Researchers such as McConachie (1997) remain critical

of professionals and claim that they are not good at givingparents the support they need during the first months aftera baby has been found to have complex disabilities. Theseclaims challenge professionals to reflect on their practiceand their approaches to families, and their commitment tofamily-centred services. Their goal is given focus byRitchie (1998):

‘What can services do to value and preserve anenriched family life [for people with disabilities]?’

(p.4)

Refocusing professional perspectives‘Professional distancing’ can, when it ignores the feelingsof families, be as damaging as over-involvement. To beeffective, professionals need to have respect for eachand every family, at every particular moment, byacknowledging their expertise in their unique situation.Families and their expressions of needs must be listenedto as a sincere commitment to family-centredness requiresempathy and respect.

Smith (1997), a mother, writes:

‘It is like being hit by an express train. First of allthe engine hits you with the news that your baby hasserious problems. Perhaps the birth was difficult,and she didn’t breathe properly. Perhaps she hadn’tdeveloped in the womb. But here she is, hanging on tolife by a thread, and suddenly life becomes very fearful.’

‘Days or weeks later, the first coach hits you with thenews that she has brain damage. No one can saywhat the effects will be.’

‘The second coach, after weeks or months, brings herblindness or deafness, maybe both, and then the thirdcoach: perhaps cerebral palsy, epilepsy or inability tosit or eat.’

‘So it goes on. The train might have other coachesyet to come: parents separating under the strain; job,car, home lost because of the need to be with yourbaby; or, the greatest blow of all, your baby dying.’

‘The track on which the train is running is harsh inthe extreme. A continuing sequence of your baby’sillnesses, hospital readmissions, sleepless nights,exhausting days and questions to which there are noanswers: “Why did this happen?”; “Will she everlearn to smile… sit… play?”; “What will she be likewhen she is older?”.’

(pp.2-3)

A dramatic rise in the survival rates of children bornwith disabilities (particularly those born prematurely)has been reported in the last decade. The nature oftheir disabilities is, at times, significantly differentfrom that previously reported, posing problems forthe families attempting to nurture the developmentof these children. Barry Carpenter, Chief Executiveof Sunfield, considers the needs of the self-definingfamily, the implications for interdisciplinary practice,and the changing pattern of early childhood disability.He asks a fundamental question: ‘How can professionalssustain the family of a child with disabilities?’

135British Journal of Special Education Volume 27, No. 3 (September 2000)

cycle; environmental events; external factors; individualrelationships; and the personal and collective experiencesof family members. Individuals in a family develop roles,rules to live by, communication patterns, ways to negotiateand solve problems, and methods for completing tasks ofdaily living (Goldenberg & Goldenberg, 1985). Familiesprovide social support and sustenance and share commitmentsand responsibilities. They are also ‘contexts’ (Carpenter,1997) for learning and growth and have a particularlydecisive influence on the social and emotional developmentof children.

Carpenter (1996a) has suggested a model of an extendedfamily support network that reflects a more appropriatereality for many families than the traditional, nuclearmodel. Patterns of interaction may vary within this groupand some of them may revolve around the triad of primarysupport: child, mother and father. They may also centreon a lone parent with a child with a disability, who seeksand receives various types of support from any of theidentified groups.

Figure 1: A triad-based extended family supportnetwork

When one of the children within a family has a defineddisability, the need for that family to be an effective socialstructure becomes even more important. If services donot allow families to function in this way, we have anobligation to make our criteria for inclusion more flexible.As Beckman and Beckman Boyes (1993), writing from aprofessional-parent perspective, remind us:

‘The news that a child has, or is at risk from adevelopmental disability, is often among the mostfrightening and confusing pieces of information thatparents will ever receive.’

(p.1)

A family which has become ‘divided by definition’ willnot be functioning at full strength when its support is mostneeded.

The need for support from professionals is also crucial.As Davis (1998) points out:

Defining the familyAs individuals, most professionals recognise theimportance of family-centredness, but within thestructures of outmoded support services, there is stilldiscrimination against family involvement. Serviceguidelines often fail to recognise changes in society,including restructured family units, that as individuals wewould acknowledge.

The stereotyped notion of ‘the family’ (two married parentsof the opposite sex, with two children, who rely on thefather’s income) is a reality for only one family in seven today(Roll, 1991). Research indicates that despite anxietiesabout the destruction of the family, it is its ‘forms’ ratherthan its ‘functions’ that have changed (Dahlstrom, 1989).The patriarchal model of the family which comprisedblood relatives and included safety nets for the aged,infirm or other dependent kin is far less a feature of modernlife than it was at the beginning of the twentieth century(Mitterauer & Sieder, 1982). David (1994) documents thechanging gender roles in society which have also influencedthe stereotypical roles assumed by key family members(eg, mothers, fathers and siblings).

All these influences indicate that our traditional definitionsof the role of the family are no longer valid and can hinderprofessional interactions. Winton (1990) captures the essenceof the family:

‘Families are big, small, extended, nuclear,multi-generational, with one parent, two parents, andgrandparents. We live under one roof or many. Afamily can be as temporary as a few weeks, aspermanent as forever. We become part of a family bybirth, adoption, marriage, or from a desire for mutualsupport. A family is a culture unto itself, withdifferent values and unique ways of realising itsdreams. Together, our families become the source ofour rich cultural heritage and spiritual diversity. Ourfamilies create neighbourhoods, communities, statesand nations.

(p.4)

The family, however, is still seen as the major vehicle withinwhich to rear children, and its importance is persistentlyhighlighted in European (Leskinen, 1994) and international(Mittler, 1995) studies. Following the birth of a child withdisabilities, the family needs emotional and practicalmeans of support. But the question arises: ‘Does thatfamily have to comprise blood relatives and, in ourmodern mobile society, is it the reality for many families?’Demographic trends are a significant influence, as is theever-increasing breakdown in marriages, which can leadto many reconstituted families. For any of these families,the reality of support may be derived from a ‘self-definedfamily’, comprising non-blood relatives carrying out thefunctions traditionally associated with the patriarchal,blood-related family.

Families are systems influenced by many factors: the ethnicand cultural background; the stage of the family life

Grandparents

Child

Work colleagues

Mother

Siblings

Father

Friends

Other relatives

Neighbours

136 British Journal of Special Education Volume 27, No. 3 (September 2000)

‘If parents are overwhelmed by the extreme stressesof the situation, they will be unable to cope withthe child’s problems and will find it difficult toprovide the love, security and responsive stimulationessential to the well-being and development of thechild.’

(p.1)

In order to provide effective services for our families, wemust understand and respect them as roles in familiesdiffer according to situations and cultures, and may notfit stereotypic assumptions. Families themselves willprovide the key to support.

Family contributionsFamily dynamics may mean that services need to beunaccustomedly flexible and it is inappropriate for singleparents to be consistently unsupported by either theirpartner or significant others in their meetings withprofessionals owing to the timing of, or the exclusion ofnon-blood relations from, these meetings. Mothers play apivotal role in many families and research and otherstudies have shown that they carry the bulk of householdchores and child care (Fewell & Vadasy, 1986; Hornby,1995). Hautamäki (1997) has produced findings from across-Nordic study in which she contrasted the situationof over 1,000 mothers of children with Down syndromewith mothers of non-disabled children. She found that themothers of children with Down syndrome had increasedcare-taking responsibility; had often amended their ‘lifeproject’ goals; had more restricted leisure activities anddifferent work patterns; and, when they did work, theyhad high levels of sick leave. In her international study,Mittler (1995) found that mothers typically remained themajor carers throughout all regions of the world.

In the case of fathers, Carpenter and Herbert (1995)suggested that if we are to include those whom McConkey(1994) has described as the ‘hard-to-reach parents’, servicesneed to take into account ‘the life patterns of fathers’.They need to be offered increased access to informationand support, to be provided with opportunities to networkwith other fathers and to have their need for informationand emotional support within the family addressed. In orderto achieve these aims, greater training and awarenessamongst professionals is necessary. In his collection ofessays by fathers, Meyer (1995) tells how the birth of achild with a disability brings about life-transformingexperiences. For some, it is a challenge which allows themto display aspects of their personality not previouslyacknowledged. For others, it causes ‘relentless stress’ anddisorientates their life goals and affects their workpatterns.

Bray, Skelton, Ballard and Clarkson (1995) identifiedtwo main types of love within their cohort of fathers:‘unconditional’ and ‘transforming’. Firstly, there were thosefathers who displayed utter devotion to their children byjust accepting whatever they did and patiently standing bythem through all their endeavours. Secondly, there wereothers who felt that by transforming acts (eg, converting a

room in the house; building special play equipment in thegarden) they could significantly transform their child andenhance his or her life opportunities.

Traditionally, it has been thought that the siblings ofchildren with learning disabilities suffered particularproblems related to isolation, guilt or resentment. As withfathers, it is important that specific consideration shouldbe given to the needs of these family members, as a studyby Newson and Davies (1994) has demonstrated. Theirworkshops with the brothers and sisters of children withautism led to considerable attitudinal adjustments in thesiblings who were part of the group. Glynne-Rule (1995)found in her survey that few siblings experienced bullyingand teasing and that, after the parents, the siblings of thechild with learning disabilities were the main relativesproviding help, care and education. Similarly, other studies(Byrne, Cunningham & Sloper, 1988; Tritt & Esses, 1988)have shown that the siblings of children with disabilitiesshow no difference in emotional and behaviouraldisturbances to the siblings of ‘normal’ children. Brothersand sisters have often been found to be well-adjusted andmature and to show a responsible attitude beyond theirchronological age (Dale, 1996; Seligman & Darling, 1989).

Meyer (1997) in a collection of writings by the siblings ofchildren with disabilities included humorous, thoughtfulstories offering insights into the needs and perceptions ofthose growing up with a brother or sister with specialneeds. Justin (aged 10) wrote:

‘There are good parts about having a brother whohas autism. My brother, Jacob, is old enough toplay with, and he understands some things. But,unfortunately, there’s a bad part. Sometimes mybrother gets out of hand and hits people; even me!’

(p.23)

The child’s grandparents are usually a common source ofsupport for the family (Hastings, 1997) although somereports suggest that many have difficulties in adapting tothe situation and often attempt ‘to deny the reality’ of thedisability or to reject the child. These difficulties can leadto a breakdown in the relationship between parents andgrandparents and despite evidence showing low-levelsupport from grandparents (Hornby, 1995). Mirfin-Veitchand Bray (1997) showed that grandparents offer supportthat is both emotional and practical. It is to them thatparents feel most able to disclose their full range of emotion,and they may also offer direct assistance to the family byshopping, baby-sitting and through financial support.

Significant others in familiesThe literature on ‘significant others’ in the lives of childrenwith disabilities is sparse and Mittler (1995) notes that thesupport that is available to families, particularly in thelocality in which they live, is ‘crucial in determining theirquality of life’ (p.51). Families interviewed as part of thisinternational study reported, however, that neighboursisolated them (Family Maro, Tanzania) or that friendswere encouraging and offered child-minding (Family


Murthy, India). While some families received sympathyfrom friends (Family Chawdhury, Bangladesh), others weredirectly attacked by members of their neighbourhood(Family Eed, Jordan).

A series of semi-structured interviews (Carpenter, 1996a)with 20 families of children with severe disabilities (aged5 to 16 years) revealed that the following non-bloodrelatives offered support:

• neighbours;• friends;• work colleagues;• church members;• teachers and assistants;• link families;• volunteers (from charitable organisations).

The main types of support offered (ie, reported by morethan five families in the sample) were:

• baby-sitting and child-minding;• transport;• respite care;• social activities;• meals out for the child and/or the family;• practical help in the home (household chores,

maintenance tasks);• empathetic listening.

All families in the study reported that without the help oftheir ‘self-defined family’, their patterns of living wouldhave been severely disrupted and that their capacity tofunction effectively would have been damaged.

The challenge for professionals‘With other families, there were interests in commonother than our children, and time spent with thesefamilies was for the same reasons one might spendtime with any set of friends. What is unique aboutfriendship with other families [of children withspecial needs] is the depth of understanding: they aremore than the sincere, empathetic professional. Theyhave been there too, through the endless hospitalappointments, the perplexing behaviour patterns, theunanswered questions. This in no way diminishes theinvaluable contribution of professions, but to livewith a child with a disability 24 hours a day, bringslessons that no professional course of training canhope to teach.’(A father, quoted in Carpenter & Herbert, 1995, p.8)

For many years, a variety of professionals have encouragedfamilies to accept their children with disabilities, and haveattributed their reluctance to a bereavement response. Attimes, their irrational behaviour has been likened to griefand, although many of the similarities between grief andparenting a child with disabilities may be endorsed, thereality at the sadness of having a child with disabilities isconstantly renewed, regardless of the pleasures gainedfrom each hard-sought-for development. Bowdery (1997),

the mother of a young man with disabilities, reminds usthat the ever-unfolding pattern of life brings new andpainful insights:

‘Just occasionally there is a tantalising glimpse of theson that might have been. This is not the baby, theadolescent or adult I thought I would have.’

(p.6)

Parent empowerment has been vigorously discussed byDempsey (1993) and offers the best antidote to whatCarpenter (1997) termed ‘the chronic vulnerability offamilies of children with disabilities’. The lack of aprofessional understanding of the situations of familieshas led parent support organisations (such as OneHundred Hours in the UK) to evolve models of servicedelivery that are more ‘family-friendly’. The ‘key worker’role is seen as pivotal in offering direct, meaningfulsupport to families and synthesising the multiplicity ofprofessional inputs that can overwhelm families if theyare not carefully managed. Limbrick (1997) defines therole of the key worker as a family-focused approach,based in a helping relationship built on honesty, trust andconfidentiality, and defined by the parents’ agenda. Hepresents a model of the key worker role which offers aninteractive supportive approach (see Figure 2).

Family-focused, family-oriented, family-centred models ofservice delivery are widely discussed in the literature dealingwith family support and early intervention (Campbell,Strickland & La Forme, 1992; Dale, 1996: Hornby, 1995).Many researchers and practitioners feel that family-centredmodels are more humane and dignifying for children andtheir families. They acknowledge the child’s context, withits associated demands and limitations, and introduceappropriate and sustainable interventions. Such approachesare also aimed at increasing the capacity of families to provideresources to other families, to assist in problem-solvingand to build self-supporting and self-sustaining practices.Sensitive interactions between families and professionalsare crucial if the family is to be allowed to make itscontribution in the ever-changing, uncharted scenario oftheir child (with a disability’s) development.

In Europe, family-centred approaches have been thesubject of ongoing research and Peterander (1995)suggests that:

‘Holistic, family-oriented approaches require closecollaboration between the range of professionals inthe fields of pedagogy, psychology, social sciencesand medicine.’

(p.162)

In Finland, Mattus (1994) and Mäki (1994) have stressedthat the aim of family-centred intervention is to empowerfamilies and they go on to recommend an ‘ecological’approach in which the involvement of the family ispivotal. Its purpose approach is to gather informationabout children’s lives: their activities, interactions,experiences and peer contacts in natural environments.


Figure 2: The One Hundred Hours Keyworker Model (Limbrick, 1997)

‘What I have tried to do in the past, but is not alwayspossible in practice, is to involve the dads. I rarelymeet the dads. There is one who is keen to talk tome, and I try to organise my visits to fit in with hisshift work. A way of overcoming this problem forthe others is to try to leave something with theparents, even just a sheet of paper, that they could

Speech & Language Therapist

Physiotherapist

PaediatricianGP

Health VisitorOutreach Nurse

SocialServices

EducationDepartment

The Familydecides the keyworker’s

role and establishespriorities

Integrationas far as possible of parentprogrammes to produce aunified programme for the

whole child.

TheKeyworker

supports parents as they riseto the disabilities.

Occupational Therapist

Specialist Teachers etcDirect contact at necessaryintervals for specialist treatment,

ongoing assessment,programme modification etc.

Parent Programmesgiven to parents to use at home to promote

child’s well-being and development

Open channels of 2-waycommunication

A close relationshipbased on honesty, trust and

confidentiality and acknowledgingthe strengths within the family. Thekeyworker makes 1 or 2 home visitseach week and the role can include:

1. Giving emotional support2. Supporting parents in finding

answers to questions3. Supporting parents in getting the

best from all services4. Supporting parents in promoting

the child’s quality of life, all rounddevelopment, learning and play

Ballard’s (1994) perspective illustrates the practicalreality of this approach for the extended family andsociety. How to operate with a self-defined family in afamily-oriented manner is a major challenge and concernfor professionals. In an ongoing study, Jones and Ware(1995; 1997) articulate the concern of particular healthprofessionals:


talk about. I try to make clips of video that theparents could look at together and try to discusstheir ideas.’

(p.7)

McConachie (1997) pointed out that many professionalshave had little training in working together, let alone withfamilies. Thus to operate effectively in an interdisciplinaryway is not always the reality for many multi-professionalteams working with the families of children with disabilities.The shift towards family-centred service-delivery reflectsa move away from initial efforts to involve parents in theirchildren’s specialised care which revolved primarily aroundthe parental approval of professional recommendations.McGonigel and Garland (1988) note that early approacheswere often overly directive, and Basil (1994), writingfrom the Spanish context, describes how many teachersendeavoured to transplant their skills on to parents.Pivotal to the family-centred model is its focus upon theneeds of the entire family rather than on the needs of thechild; the respect for family diversity; and the emphaseson flexible and responsive service and upon parentalchoice and decision-making (Dunst, Johanson, Trivette &Hamby, 1991). The family-centred approach is not a panacea;it will not instantly bring about quality services, but it willreposition the family at the heart of service-delivery as themost informed source of knowledge about the child andits family. As Beckman and Beckman Boyes (1993) state:

‘Like other families, we have experienced ourshare of competent professionals and our share ofincompetent professionals; felt good about theservices that Jacob was receiving, and felt that hewas entitled to more; and met sensitive, caringprofessionals, and insensitive ones. We have waitedfor days to have a phone call returned, travelledmiles to appointments, and feared the reactions ofother children.’

(p.2)

Early intervention?The need for early intervention is obvious to those involvedwith the families of children with disabilities, althoughprofessional ‘value-for-money’ arguments threaten theprovision of such services in many countries. Guralnick (1998)tirelessly campaigns internationally to swing professionalopinion away from the efficacy debates and states:

‘Equally damaging is the now intense professionaldebate surrounding claims of the effectiveness ofearly intervention… Positions have been put forwardsuggesting that no long-term benefits of earlyintervention can be found: a conclusion that frequentlyfinds receptive audiences at professional and politicallevels.’

(p.320)

This belief is shared by many families who, through bitterexperience, have found that early intervention is anintrinsically supportive process that has sustained themthrough traumatic periods of their lives.

As Eurlyaid, the European Working Party on EarlyIntervention, states:

‘Early Intervention can be defined in all forms ofchild-oriented training activities and parent-orientedguidance activities which are implemented indirect and immediate consequence of theidentification of the developmental condition.Early Intervention pertains to the child as well asto the parents, the family and the broadernetwork.’

(Heinen, 1997, p.6)

The need for culturally sensitive early intervention, as auniversal concept, is highlighted by the work of Srinivasanand Karlan (1997) who remind us that the:

‘… diverse child-rearing goals and practices ofIndian culture are not compatible with Westernconceptualisations of effective early intervention.’

(p.367)

Nevertheless if we do not start to adopt early interventionas a fundamental and valuable component in ourrepertoire of support services to families of children withdisabilities, we will see its demise; and families will paythe price.

It is important not to lose sight of the fact that theimpact on families of children with disabilities, and theirneed for support, is life long. The reality for them is thatthey face recurrent and unpredictable challenges. Notonly do they require appropriate early intervention toprovide support in the years after their child’s birth, butthey will also require access to ongoing support.Sainsbury (1998) raises issues about the lifelongimplications of disability; not only for families, but forsociety as a whole:

‘The severity of handicaps that affect survivingchildren is becoming greater. Families cannotsupport the attention their children need withouthelp from the state, but statutory funds are notrising with numbers. None of the £43 billionhealth budget is allocated towards care over alifetime of disability. Health and social services donot connect to work at the problem together andthere is little political will to improve services.My son and my family, like parents and children allover the country, are living out society’s forgottenideals.’

(p.23)

They do not seek sympathy and do not wish to bepatronised, but want to be valued and treated as equals.They are not interested in being converted to particulareducational ideologies or medical or therapeutic doctrines,but desire recognition of the individuality of their childrenand the uniqueness of their families. If these needs are tobe met, in families, a co-ordinated and coherent approachis necessary.


Towards a transdisciplinary approachThis approach demands new patterns of working thatare neither multi-professional nor interdisciplinary, butare transdisciplinary. Skilled professionals will no longerbecome concerned solely with their own disciplinaryboundaries, but with their capabilities as empathetichuman beings and their disciplinary skill base in order toenhance the lives of the families that they support. Theywill need to use an empowerment approach (Appleton &Minchcom, 1991) that recognises the family as a system,with its own social network and the right to a choice ofservices and levels of engagement. Negotiation (Dale, 1996)will be a key feature of their practice and, where there aredifferences between professionals and families, there willbe joint decision-making based upon shared perspectives.Partnership with families thus becomes a dynamic not astatic concept, which is multi-level, rather than linear inits approach.

Recently, a group of professionals involved in atransdisciplinary early intervention course (Carpenter,1996b) sought to clarify the interactive nature of theirwork with families using Hornby’s (1990) model forparental-professional involvement. They identified thekey reciprocal functions as being:

• support;• education;• liaison;• communication;• the provision of information;• collaboration;• resource;• advice.

As Beckman, Newcomb, Frank, Brown, Stepanek andBarnwell (1996) point out:

‘Viewing families as full and equal participants indecision-making teams does not lessen the role ofservice providers or diminish the value of theirexperience or expertise.’

(p.231)

Open and honest sharing of ideas, knowledge and skillscan lead to a more collaborative team process and resultin better services for the child. It is necessary, however, tobegin to address more fully ways of fostering reflectivepractitioners who will feel comfortable and valued inworking within families.

Changing patterns of childhood disabilityWith technological progress and developments inmedical practice, the survival rates of neonates areincreasing (Emsley, Wardle, Sims, Chiswick & D’Souza,1998; Hallahan, Kauffman & Wills Lloyd, 1996) and asignificant proportion of these children will be born withmajor disabilities and will require the lifelong support ofprofessional services (Carpenter, 1999). Professionalswill need to plan ahead, to address the challenges tofamily life, to explore new ways of intervening in order to

improve life for the next generation of children withlearning difficulties and their families, and to workwith them to achieve their aspirations. A mother(quoted in the Mental Health Foundation Report, 1997)said:

‘Paul is our son. We love him and we wanted himto have an ordinary life. Not much to ask for, anordinary life - but it can seem as distant as the moonwhen you are struggling to live with challengingbehaviour.’

(p.61)

For babies exposed to prenatal abuse, there is a high riskof abnormality leading to disability. Ball reported (1995)in a national American survey that 375,000 newbornbabies a year had been exposed in the womb to cocaine,heroin, marijuana, methadone and amphetamines. One inevery nine women, in the maternity wards of the privateand public hospitals studied, had used illegal drugsin pregnancy. (The study revealed that the problemtranscended the class barrier, and was as great, if not greater,among the middle classes.) It illustrated that exposure inthe womb to cocaine could cause prenatal strokes andlasting brain damage, seizures after birth, premature birth,retarded foetal growth, breathing lapses, absence of partof the gut, and structure abnormalities in the genital andurinary organs. The study did not investigate alcoholabuse in pregnancy, but conjectured that it was an evengreater problem than illegal drugs.

The Guardian (June 1998) reported Slotkin’s studies showingthat smoking by pregnant mothers was consistentlycausing low birth weight babies, long-term damage tounborn babies, or even death in 50% of cases.

The debate on vaccination, particularly for measles,mumps and rubella (MMR), continues. Although it hasbeen found that children can be physically and intellectuallyimpaired as a result of the MMR vaccination, the SundayTimes (August 1997) reported that only 887 cases of3,801 presented to the Compensation Board had beensuccessful. Emsley et al. (1998) have particularly focusedon the survival rates of premature/very low birth weightinfants as an upward trend reported in many Westerncountries. Their study showed that during 1984-89 and1990-94, the survival of preterm babies had improvedfrom 27% to 42%. More survivors had visual impairment(retinopathy of prematurity (4-l8%)), a figure reinforcedby Rogers (1996), who estimated that 100-150 babiesbecome blind each year as a result of the condition.

The rate of disability increased from 38% to 68% in thesurviving neonates, all of whom, Emsley et al. state, were of23 to 25 weeks gestation. Although many of the disabilitieswere mild, there were children with severe to profounddisabilities. These findings are elaborated by Hallahan etal. (1996), who state that of the children diagnosed, 90%had cerebral palsy; 25%, vision problems; 25%, hearingloss; 25%, serious growth problems; and 21%, mentalretardation (21%).


Throughout the world there is an upward trend in the rateof multiple births, particularly in countries where thetreatment of infertility is available (Mitchell, 1998). Russell(1998), reporting the preliminary findings of a MedicalResearch Council study, noted that 70% of multiple birthsdue to in vitro fertilisation result in some form of disability.Hence some families may have one, two or more childrenwith disabilities.

Champion (1998a; b) demonstrates how the mother (orcaregiver) is the facilitator of brainstem maturation.Replicating some of Perry’s work, she emphasises theimportance of the first year of life in which the organisationalpattern enabling the infant to cope with external stimuli isestablished. Those babies born prematurely, who spendtheir early weeks in an incubator separated from theirmother for much of the time, may suffer consequences notyet understood.

A disturbing piece of research (MacDonald, 1998) fromUniversity College, London, discovered that babies’sensory systems have a unique, pain-signalling mechanismwhich disappears as they grow older and that newbornchildren feel pain longer and more sensitively. Inpremature babies, the mechanism that ‘dampens down’

the pain messages does not work properly. It is thereforeessential to consider whether the impact on the sensorypathways subsequently compromises their effectivenessas learning channels for these children.

Professionals are being faced with children with increasinglycomplex learning disabilities who challenge specialeducators to devise new and innovative methods ofteaching, and other services need to devise new strategiesfor sustaining and upholding families who will requireearly intervention that can enable them to work withprofessionals towards meeting the needs of theirchildren.

The challenge is to enable and empower families(Dunst, Trivett & Deal, 1988), but are we ready to alignprofessional practice with family need? With all thecompeting pressures on resources in services, can there bea philosophical shift? Perhaps our inspiration for such ashift should be the words of Donald’s mother (Donald hassevere disabilities and challenging behaviour):

‘You don’t know what it feels like to be the parentnobody wants… I wish life was different.’

(Mental Health Foundation Report, 1997)

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This article is based on a professorial lecture given on 19April 1999 at the University of Northumbria at Newcastle.

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Address for correspondenceBarry CarpenterChief Executive, SunfieldWest Midlands, UKEmail: [email protected]

Accepted for publication: February 2000


NASEN invites submissions for the best essay or article which informs the education of pupils or adults with special educationalneeds. The Award (now in its fifth year) is open to professionals, involved either with adults or children with special educationalneeds, whose work has not previously been published in either a peer reviewed journal or a book. The winner will receive acheque for £200, and his or her article will be published in British Journal of Special Education. Support for Learning andSpecial! will carry summaries. Your submission should:◆ help either to extend practice or to develop thinking; ◆ be based on an innovative project or piece of action research, completed duringthe previous twelve months; ◆ not have been published elsewhere; ◆ be not more than 3,300 words in length, including references.

Entries (consisting of four hard copies, typed in double spacing and clearly marked ÔStanley Segal Memorial AwardÕ)should be sent to: Dr Christina Tilstone, Editor, British Journal of Special Education, School of Education,

The University of Birmingham, Edgbaston, Birmingham B15 2TT by 30th September 2000.Judging will be undertaken during October and November.

The winning article will be published in the March 2001 edition of British Journal of Special Education.

Stanley Segal Memorial Award

Sustaining the Family: Meeting the Needs of Families of Children with Disabilities

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Transcript of Sustaining the Family: Meeting the Needs of Families of Children with Disabilities