A Better Start: Children and Familieswith Special Needs and Disabilities in

Sure Start Local Programmesby Anne Pinney1

March 2007

Sure Start Local Programmes (SSLPs) supported children under 4 and their families by integrating early education,childcare, health care and family support services in disadvantaged areas. Providing services to families wherethere were specials needs and disabilities was one of the core tasks that the programmes were required to carry out.This study looked at how they tackled it.

1 The author is an independent researcher who was commissioned to carry out this study by the National Evaluation of Sure Start (NESS), at theInstitute for the Study of Children, Families and Social Issues, Birkbeck College, University of London.

Key findingsSSLPs varied in the ways they identified and counted special needs and disabilities, but those studied estimated that

they were working with between 5 and 120 children in this category, with an average of 40, or 5% of the age group.

The highest incidence of need reported by SSLPs was speech delay, followed by behaviour issues, autistic spectrumdisorders, development delay, hearing or visual impairment and Downs syndrome.

It was the way SSLPs improved the services they offered to all families - providing more of them, in more accessible,better settings, with more flexible responses to what parents wanted – that made it possible for families with additionalneeds to participate.

Where SSLPs provided services targeted at children with special needs and disabilities - like Portage and specialplaygroups – they were more likely to reach children with more complex needs. The SSLPs that were doing this were incontact with larger numbers of families in this category.

Family Support services proved the most useful aspect of Sure Start for families with children with more complexneeds. These services help families to cope in crises, obtain services and benefits, gain skills and confidence insupporting their child’s development and get some respite from their caring responsibilities. Home-visiting was particularlyimportant in reaching isolated and vulnerable families.

The availability of specialist health services like speech and language therapy and mental health outreach wassignificant for these young children, enabling preventive work to occur, and developing parents’ skills in promoting theirchild’s development and managing their behaviour.

Inclusive practice, flexible staffing and funding have made early learning, play and childcare opportunities availablefor children with special needs and disabilities, but early years provision was not always well integrated with other SSLPservices.

Future improvements to early years provision will need to be made in developing the links between services thatenable forward planning and supported transitions for children with special needs and disabilities, that develop staff skillsand confidence and enable holistic responses to children’s needs.

National evaluation summary

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Background

Sure Start Local Programmes – now Sure StartChildren’s Centres- were community-based andsupported an average of between 400 and 800children under four years old. There were 524programmes which were rolled out in six stages or‘rounds’. The National Evaluation of Sure Start(NESS) has been assessing the impact,implementation, community characteristics andcost effectiveness of SSLPs by examining the first260 programmes, the first four rounds.

Although allowed scope in the design of theprogramme, all SSLPs were expected to providecore services: outreach and home visiting, familysupport, good quality play, learning andchildcare, health care and advice, and supportfor children and parents with special needs.

There was considerable evidence about thebarriers that parents of disabled childrenencounter. They face extra financial costs, are lesslikely to be able to work, and the majority live ona low income. These families are under stress,both from the demands of their child and fromdifficulties of obtaining support. They are often incontact with a wide range of professionals andreport ‘a constant battle’ to find out what isavailable and the role of different agencies.Black and minority ethnic families, in particular,tend not to take up the services and benefits thatare available. There has been concern about howfar disabled children and those with SpecialEducation Needs (SEN) are able to access earlylearning, play and childcare. And the supportavailable for pre-school children with SEN hasbeen poorer than that available for those atschool, though there is clearly potential forpreventative work when children are younger.

Reforms intended to tackle these weaknesses wereunderway alongside Sure Start LocalProgrammes, and were outlined in the ChildrenAct 2004 and the National Service Frameworkfor Children. Initiatives like Together from the Start

(2003), which provides guidance for improvingidentification, intervention and multi-agencysupport for families; the Early Support Programme,which develops good practice in these areas; andreports on offering opportunities, like Improvingthe Life Chances of Disabled Children, allprovided a climate in which SSLPs could make acontribution. The emphasis in all of them was onearly intervention, greater coordination betweenservices and improving the skills of the workforce.

Aims of the Study

This research project aimed to explore:

• how SSLPs developed services to meet theneeds of children and families with specialneeds and disabilities in terms of core(mainstream) and specialist (targeted)provision;

• the range of practice across different areas andfor different groups;

• factors which enabled some SSLPs to excel inmeeting the needs of children and families withspecial needs and disabilities, or which actedas barriers to progress.

The definition of special needsand disabilities used is thatcontained in the Sure Startguidance (2002):

“A child under four years of age has adisability or special needs if she or he:

(i) is experiencing significant developmentaldelays, in one or more of the areas ofcognitive development, physicaldevelopment, communication development,social or emotional development, andadaptive development ;or

(ii) has a condition which has a highprobability of resulting in developmentaldelay.”

Methodology

The research for this study was carried out in2005-6. It was conducted in two stages.

Stage One: • Literature review, interviews with national

stakeholders, review of evidence from NESS,web searches and pilot field work in three SSLPs.

Stage Two:• Fieldwork in a sample of twelve SSLPs (by this

time most were Sure Start Children’s Centres),selected from a shortlist of 50. The list wasbased primarily on evidence from NESS,showing the extent of special provision offered(national survey, implementation), spending onSEN (cost effectiveness) and ratings of SSLPs interms of multi-agency teamwork, access tospecialist services, strategies for identifyingusers and other key characteristics (programmevariability). The twelve study areas wererepresentative in terms of socio-economic andBME profile based on NESS local context dataand covered a range of lead partners, regionsand area type. Field visits involved:

• a review of literature and information for parents;

• interviews with programme manager, heads of services or special needs, and a variety of staff;

• semi-structured discussions with parents;• short questionnaires on key services and

special needs numbers;• phone interviews with partner

organisations and board members.

Findings

Approaches to Special Needs

SSLPs varied in the profile they gave to specialneeds in policies, literature and imagery. Thistended to be higher when the programmemanager or senior staff had personal or

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professional experience of special needs anddisabilities. The parents of children with specialneeds highlighted this as an area forimprovement.

Specialist Expertise

SSLPs also varied as to whether they employed astaff member with expertise in special needs ordisabilities. Half employed such a worker, usuallyin the outreach team, who made home visits tochildren and families with significant and complexneeds, and worked with them on activities topromote development and to establish routines.Workers enabled families to access relevantservices, activities and benefits; planned andsupported children and parents in transitions toearly years settings; and advised colleagues onspecial needs, reviewing cases with them andproviding training to all programme staff andvolunteers. In several areas these staff also rantargeted groups for children with special needs.

Improving the Profile:recommendations from parents

• Programmes need to ensure that the profileof disability is raised at all forums,meetings and events and that there isrepresentation from parents;

• Planning of services and events needs totake into account the needs of disabledchildren and parents and to be welcomingfor them;

• The accessibility of premises and eventsneeds to be reviewed in terms of physicalaccess and attitudes, with the needs ofindividual families taken into account;

• All imagery associated with theprogramme should reflect diversity in apositive way;

• Everyone working in the programme orcentre should have an inclusive attitudeand all staff should be responsible forinclusion within their own roles.

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In several programmes, the special needs expertwas a key staff member using their experience toinfluence broader SSLP practice – including staffdevelopment opportunities, information systemsand funding arrangements. These SSLPs wereamongst the most effective in working withchildren and families with special needs anddisabilities. Almost half the SSLPs visited had nostaff member playing a lead role in relation tochildren and families with special needs anddisabilities. Those that had a programmemanager and/or family support manager whotook a keen interest in special needs anddisabilities were nonetheless working well withthis group. But in the few SSLPs which had no in-house special needs/disability expert andseemingly, little senior management interest, staffwere notably less confident in describing theirwork with this group and appeared to be workingwith few, if any, children with significant andcomplex needs.

Targeted Services

SSLPs also varied in the amount of special ortargeted services they offered. Over half ran theseservices, either with a developmental focus orgiving parents and children the chance to ‘stayand play’ in a supported environment. Parentswere enthusiastic about the opportunities given byspecial groups and play opportunities to shareexperiences.

“Lauren’s starting to notice for herself that she’sdifferent from the other kids, so I think it isimportant for her to be around other kids withspecial needs...Even though we may treat them allthe same…they do need that something extra,”one parent explained.

Some SSLPs expressed concern about specialistprovision, feeling that fully inclusive services metthe needs of families and that targeted provisionwas liable to be stigmatised. But theseprogrammes were less successful in reachingfamilies with children with disabilities or more

complex needs. One quarter of the SSLPs visitedsaid that they had worked with few, if anychildren with significant and complex needs anddid not think they had a clear role in doing so,since there were specialist statutory and voluntaryagencies to help these families. But every SSLPwas responding to the wider group of childrenwith special needs, which includes those withmoderate delays and difficulties, like speech andlanguage delay and behavioural difficulties.

More and Better UniversalServices

SSLPs have extended and improved servicesgenerally, and families where there are additionalneeds have benefited from the expansion,particularly in terms of:

• increased playgroup, childcare and nurseryprovision, drop-ins and play opportunities.SSLPs funded additional sessionals for childrenwith special needs to give them extradevelopmental opportunities and respite fortheir parents.

• increased family support, at groups or throughhome visits. Parents caring for disabled childrenor children with learning difficulties were likely toreceive intensive, sustained home support.

• increased specialist health services, particularlyspeech and language therapy and mentalhealth outreach, delivered in groups, to earlyyears settings or at home.

Influencing the Way Services areDelivered to Young Children withSpecial Needs

SSLPs have influenced other providers, likechildminders and local playgroups, to becommitted to equal opportunities and inclusiveservices, and to be flexible and responsive tofamilies. They have demonstrated a preventiveapproach, for example, through speech therapistswho address emerging special needs without theneed for assessment or referral. They have workedto overcome the ‘barriers to access’ faced by

families through family support, visiting families athome, exploring with them the services they need,building their confidence to join groups,organising transport and childcare and reachingout to BME communities. SSLPs have made theirown and other community facilities accessible andwell-equipped, including special toys andequipment for individual children. And they have‘joined-up’ services, leading to quicker, moreappropriate responses for families and improvedproblem-solving among professionals.

Improvements in Services - Family Support

Family support services were important to childrenand families with special needs and disabilities.They could be structured in different ways, forexample: as a small sign-posting team; a smallteam of experts (nursery nurses, social workers,speech and language therapist, mental healthworker and so on, often working with genericfamily support workers); or a larger generic teamoften comprised of local parent workers, able todraw on ‘experts’ contracted to outside specialisedorganisations like KIDS, Home-Start or Barnardos.

Good practice was evident when family support:

• was a core service, working across all aspectsof SSLP provision to give a coordinatedpackage of support;

• had the expertise to provide specialist help tochild and family;

• had the time and capacity to work withfamilies over a sustained period;

• allowed for a sensible division of rolesbetween specialist and generalist staff, (thususing resources most effectively).

Family Support workers assumed the role ofkeyworker for families with disabled children,coordinating services, acting as a point of contactfor parents, and helping families to get informationand services.

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What Parents Liked Most aboutSSLP Provision

• Friendly, non-judgemental, knowledgeablestaff, who will find an answer if they don’tknow it themselves; having someone to talkto when the pressure is too much.

• Interest taken in the whole family, includingthem as parents, helping them to thinkabout their own needs and their future, aswell as finding services for their child.

• Having their own concerns about theirchild taken seriously, their experiencevalued and being shown how best tosupport their child.

• Support during the process of assessmentand diagnosis and help in obtainingbenefits, grants and specialist support.

• Having a few hours off each week (forexample, through free or subsidised childcaresessions). Encouragement and support (forexample, using childcare or having a taxiprovided) to join in SSLP activities.

• Information and advice on making choicesfor their children; high quality earlylearning, play and childcare, with skilled,friendly staff who work hard to includetheir child.

• Seeing their child happy, coping well andmaking friends.

Home Visiting

The purpose of home visiting was to help parents support their child’s development. Manyprogrammes: • employed portage workers, who delivered

home-based learning; • trained family support workers in parenting

skills and modelling play;• offered specialist programmes on behaviour

management, continence, nutrition, sleeproutines and so on;

• collaborated with social services to establishhousehold routines.

Emotional and Moral Support

SSLPs worked in areas where families werealready under pressure. Parents whose childrenhave special needs faced additional pressuresand particularly valued the help they receivedfrom family support workers during periods whenthey awaited news of the implications of theirchild’s condition. There were many stories of thesupport offered when families were facing a crisis.

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Supporting a family with severelydisabled children and languagebarriers

One Sure Start Local Programme, in apredominantly Asian neighbourhood, workswith many families with severely disabledchildren. Family support is the key serviceoffered, with outreach to help parents tomanage complex healthcare needs. Thefamily support team is representative of thelocal community, with workers who speakseveral languages. One family they haveworked with extensively has two children witha degenerative condition. The mother haslearning difficulties. Sure Start involvementhas included:

• Helping the mother to learn how toadminister a nasal-gastric feed, modellingthe process until she felt confident to do itherself. This was necessary as the fatherwas often in hospital with their other child;

• Accompanying them to key appointmentsand running through the informationafterwards to confirm understanding.Helping with follow-up calls and letters.Providing a booklet on their children’scondition in their mother tongue.

• Arranging transport for out-of-townappointments and liaising with other servicesincluding physiotherapy and dieticians.

• Regularly visiting the home to providepractical and emotional support andportage home-learning.

• Advising on benefits and helping to fill inDLA forms.

• Helping to choose a nursery for their otherdaughter.

Moving Families On

All programmes worked to avoid dependency sothat parents could cope on their own,encouraging parents to come into centres forgroups, drop-in and courses, and helping them tothink ahead in terms of their own aspirations andtheir child’s education. A parent said, “It’s onething you don’t get anywhere [else], help withyour career. It’s like, ‘Oh, wait until your kids go toschool and then you can go back’, but here it’slike, ‘No, we’ll help you do it.”

Improvements in Services - Health Services

Specialist health services offered by SSLPsincluded speech and language therapy,occupational therapy, psychotherapy,psychology/mental health and more rarely - apaediatrician, complex healthcare outreach andmusic therapy. These staff raised understandingabout development norms in their specialist area

Respite

Most programmes offered sessional childcare togive families a break, either regularly, or, in aminority of programmes, at times of crisis. It wasprovided by funding places in a nursery or playgroup,by having a flexible budget for purchasingadditional childcare, by providing regular playsessions for disabled children and siblings, bymatching families with specialist childminders oroffering regular visits by a nursery nurse.

Giving parents a break

A Sure Start on a town-edge housing estatehas a flexible childcare fund to help familiesunder stress and children in need to accessgood quality childcare. This has been used tosupport many children with special needsand disabilities, as well as parents withlearning difficulties. It is intended tosupplement (but not duplicate) provisionmade by the County Council – for example,providing additional opportunities to promotea child’s development or to help the familythrough a difficult period. Most placementsare made following referral by the familysupport manager or the inclusion worker. Acontract is drawn up setting out the aims ofthe placement and reviewed after 6-8 weeks,then termly. Normally placements aresupported for up to six months.

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Supporting families through crisisperiods

John is a single father with two children. Afew years ago, his daughter Sally had astroke which left her disabled. She used toattend the Sure Start crèche and John wasinvolved in some of the activities for Dads.When Sally was discharged from hospital –seemingly without a care plan – he turned toSure Start for advice. He described the helpprovided as a ‘lifeline’. Extra support wasarranged so that his daughter could continueto use the crèche and an outreach workermade regular home visits to deliver a playprogramme to help her to begin re-learningskills. Sure Start also provided emotionalsupport to John through this period andpointed him in the right direction to access theservices he needed. In his words:

“Sure Start staff have been fantastic, they’vebeen there for her … I didn’t know anythingto be honest, just dropped into a situationwhere it’s like, I’m on my own basically …There’s so much help out there if you know theright places to look.”

among parents and colleagues, running trainingfor the latter, and being a visible presence atmany Sure Start activities like drop-in sessions.

Health professionals valued the scope given bythe SSLP for them to identify emerging specialneeds at an early stage, and to offer preventivesupport. Several programmes had developed ascreening programme to identify such needs, butnot all SSLPs agreed with this process, somefeeling that it meant labelling children, rather thanworking responsively to all their needs. However,parents were positive about needs identificationand had often had concerns about the child, sowere relieved when a professional broached theissue and offered help.

Health Support at Home

Health practitioners operated though home visiting,which can improve understanding of a child’sneeds, including the impact of the home environmentand parenting capacity. It enabled practitioners toreach some of the most vulnerable families.

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2 Department of Health, 2000, Framework for the Assessment of Children in Need and their Families.

Identifying risk factors andtargeting support to local families

One SSLP supported the development of ascreening tool which provides a frameworkfor exploring families’ needs, identifying thoseat risk of poor outcomes and planningresponses. The tool is based around a seriesof questions, reflecting the dimensions of theAssessment Framework for Children in Needand their Families2. Health visitors andmidwives making pre- and post-natal visits usethis to explore families’ needs and possiblerisk factors. The assessment takes about anhour to complete, in discussion with theparents, and notes are recordedelectronically. These form the basis of theSSLPs’ records.

Staff valued the tool for helping them toconsider families’ needs holistically and forproviding a framework for exploring difficultissues and enabling parents to makedisclosures. It has revealed high levels ofisolation and depression among localmothers, enabling support to be targetedaccordingly. It has not resulted in a significantincrease in demand for specialist services,

but rather, sign-posting towards SSLP activitiesand community resources – such as babymassage where there are attachment issues,courses to build parents’ confidence and ‘stayand play’ or BookStart sessions. The tool alsoprovides a better basis for referral if that isneeded and has helped to build up a clearerpicture of the needs of the community,leading the SSLP to invest more in mentalhealth outreach.

Reaching out to families

Lorraine’s three year old son, Jason, hasseverely delayed language and behaviouralproblems. She did not send him to playgroupbecause she was worried about how hewould behave. He slept poorly, whichaffected the whole family, and would go allday without speaking a word. A friend puther in touch with Sure Start. The speech andlanguage therapist and clinical psychologistvisited for several weeks, doing activities withher and Jason and suggesting things to workon until their next visit. Jason made rapidprogress. In Lorraine’s words: “He’s just like a totally different child … it’sunreal. Nobody believed me, he would goall day without saying nothing, he used to justpoint to everything and now he just sayseverything, like everything you say, he’llrepeat it!”Jason now attends the Sure Start nursery fourmornings a week, where he has settled well,and has been referred to the local childdevelopment unit for a full assessment.

Health Support at Groups and Clinics

Much SSLP group work has a developmentalfocus, on speech and language (Rhyme Time andBookStart, for example), parent/child interactionand behaviour management, and physicaldevelopment, motor skills and fitness. Babymassage was offered in most SSLPs. Someprogrammes targeted groups of these subjects atparents with particular needs. SSLP's healthprofessionals were also offering advice to earlyyears providers, both on children with particularneeds in their settings, training early years practitioners and arranging for external specialistadvice where necessary.

Improvements in Services – Early Learning, Play and Care

SSLPs have extended opportunities for all childrenin these areas. Of importance to children withspecial needs and disabilities have been:

• working with parents to promote children’searly learning and development from birthonwards, through groups, drop-in, courses andhome learning programmes like portage;

• expanding the availability of high quality,inclusive early years provision, both in-houseand locally: upgrading buildings, training staff,buying special toys and equipment andoffering specialist advice and support;

• supporting the inclusion of individual children,helping parents to choose a setting, planningahead with staff and the family and providinghands-on support through transitions.

However, there was not a clear link between theimprovements in quality in early years provisionand the extent to which children with specialneeds and disabilities were included. Whilesome ‘flagship’ nurseries attracted children with

higher support needs, many SSLPs with modest in-house facilities were working equally well with thisgroup through inclusive crèche and play sessions,home-based learning, skilled childminders andoutreach, to support children’s inclusion in thesetting of their parents’ choice.

Early years provision was the least well embeddedof SSLP services – in a few areas operating at armslength for the SSLP, with little information-sharing orcollaboration between staff. Nevertheless, therewere examples of good practice.

Conclusions andRecommendations for Children’sCentres

• National guidance should set clear andconsistent expectations about the role ofChildren’s Centres in reaching out to disabledchildren and their families and in improvingaccess to both universal and specialist services.

• Local agencies should provide Children’sCentres with regular updates on the number ofsuch children living locally. The take-up ofChildren’s Centre services by children andfamilies with special needs and disabilitiesshould be monitored – which will require aconsistent approach to definitions.

• Children’s Centres should employ a staffmember with expertise in special needs anddisabilities. This responsibility could be on ashared basis across a cluster of local centres.One person on the Senior Management Teamshould have strategic responsibility for ensuringthat the Children’s Centre is meeting the needsof this group.

• Children’s Centres must have sufficient capacityto undertake home-visiting if they are to reach isolated and vulnerable families, includingthose with disabled children. Reliance on over-

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stretched children’s services is not, at present, arealistic alternative, although in Sure Start LocalProgrammes there were positive examples ofcollaboration with social services, particularlyaround supporting parents with learning difficulties.

• Speech and language therapy and mentalhealth services should be available in allChildren’s Centres operating in disadvantagedcommunities, with sufficient capacity to workwith individual children and their parents andto promote skills and awareness in early yearssettings and through parents’ groups.

• Children’s Centres should form a key element inlocal strategies – including the Children andYoung People’s Plan - to achieve a shift inservice delivery, towards early intervention.Assessing the extent to which key services(health, family support and SEN provision) areoffered on a preventive basis should be acentral element in the new performancemanagement framework for Children’s Centres,local authorities and partner agencies.

• Improving the availability of affordablechildcare for disabled children should be apriority in local childcare strategies (includingfor parents who care full-time for their children).Children’s Centres should consider the scopefor funding additional childcare sessions for thisgroup, particularly through crisis periods.

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The inclusion worker and portage worker alsorun a more informal drop-in for children aged0-3 years and their parents, as part of thecity-wide Early Support Programme. Again,this draws on Birth to Three Matters and theportage model, breaking children’s learningdown into small steps and providing materialsand activities for parents to use to supporttheir children’s learning. A themedprogramme is published so parents canchoose to attend those sessions they feel aremost relevant.

Good Practice in ProvidingDevelopmental Opportunities

About one-third of the children attending aSSLP nursery on a run-down urban estate arereckoned to have special needs. Languagedelay was a particular concern, reinforcingdisadvantage when children started receptionclass. As well as establishing a ‘flagship’nursery which successfully includes childrenwith a wide range of needs, the SSLP offersextra opportunities to children aged 2-3 years,where there are developmental concerns.

Children are referred by SSLP colleagues orparents and expected to attend as regularlyas possible. Two weekly sessions are offeredduring term-time, based on Birth to ThreeMatters, the Foundation Curriculum and theportage approach. Speech and languageactivities are a key element in every session,as well as physical play, and Circle Time –allowing children to explore their emotions.The group is run by an inclusion worker and aportage worker, with regular input from thespeech and language therapist and clinicalpsychologist. Home-visiting allows for furtherinput individually and parents are invited tojoin the group once a term, when they canand get feedback on their child’s progress.

Each child has a play plan with identifiedtargets, or if on the SEN Code of Practice, anIndividual Education Plan. The inclusionworker keeps records on each child’sprogress which can be used to support theirtransition. Staff from feeder nurseries areinvited to join the group before transition andplanning meetings are organised for allchildren on the SEN Code of Practice, withinvolvement by a pre-school advisory teacher(who used to work at the SSLP).

• As integrated programmes of support,Children’s Centres should play an outreach roleto support the inclusion of children with specialneeds and disabilities and to raise skills andawareness in local early years settings. Havingan area SENCO (Special Educational NeedsCoordinator), pre-school advisory teacher or aspecial needs outreach worker based in theSSLP/Children’s Centre provides a valuablebasis for building relationships.

• Supporting transitions to school and beyondSSLP/Children’s Centre services will remain anarea that requires attention in the future.

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Further informationFurther copies of this summary are available from:

DfES Publications, PO Box 5050, SherwoodPark, Annesley, Nottingham, NG15 0DJ;

Tel 0845 6022260;Fax 0845 6033360;Textphone 0845 6055560;Email: dfes@prolog.uk.com

Quote reference NESS/2006/SF/019

Copies of the Full report on Services for childrenand families with special needs and disabilitiesare available from the above address or fromthe Sure Start website www.surestart.gov.uk

Quote reference NESS/2006/FR/019www.surestart.gov.uk

Further information about the NationalEvaluation of Sure Start (NESS) can be foundat www.bbk.ac.uk

ISBN 978 1 84478 910 8

A Better Start: Children and Familieswith Special Needs and Disabilities in

Sure Start Local Programmes

National evaluation summary