Sinking or Swimming? Supporting Parents with Learning
Transcription
Sinking or Swimming? Supporting Parents with Learning
• • • PRACTICE UPDATE Sinking or Swimming? Supporting Parents with Learning Disabilities and their Children ABSTRACT According to government policy, parents with learning disabilities should be provided with the support that they need to bring up their children successfully. In practice, however, their risk of having their children removed from them is high.This article reports on findings from a study designed to identify and map positive practice in supporting parents with learning disabilities and their children. It reviews the barriers confronting adults with learning disabilities who want to have and look after their children. It also describes a range of examples of positive practice, demonstrated by professionals and supporters of different backgrounds across the UK, aimed at helping adults with learning disabilities to parent successfully so that they can keep their children with them. It concludes with a discussion of what is needed to facilitate the spread of such examples of positive practice in the future. Linda Ward PROFESSOR OF DISABILITY & SOCIAL POLICY & DIRECTOR, NORAH FRY RESEARCH CENTRE Beth Tarleton RESEARCH FELLOW, NORAH FRY RESEARCH CENTRE INTRODUCTION No-one knows how many parents with learning disabilities there are in the UK; estimates of their numbers vary (McGaw, 1997). The recent national survey of adults with learning disabilities in England found that one in fifteen of the 2,898 adults interviewed had children (Emerson et al, 2005). Whatever the true figure (different estimates and studies have been bedevilled by varying definitions of ‘learning disability’; Booth et al, 2005), it is 22 generally acknowledged that their number is rising steadily and that they now: represent a sizeable population whose special needs have so far not been adequately addressed by the health and social services (Booth, 2000). National policy in England explicitly commits government to: supporting parents with learning disabilities in order to help them, wherever possible, to ensure their children gain maximum life chance benefits (DoH, 2001). The Same as You?, the review of services for people with learning disabilities in Scotland, similarly requires that: Learning Disability Review VOLUME 12 ISSUE 2 APRIL 2007 © Pavilion Publishing (Brighton) Limited SINKING OR SWIMMING? SUPPORTING PARENTS local authorities and NHS Trusts should make sure that the needs of parents with learning disabilities and their children are identified and met (Scottish Executive, 2000). Nonetheless, in practice, parents with learning disabilities are far more likely than their nondisabled peers to have their children removed from them and placed permanently away from the family home. In the English national survey, 48% of the parents interviewed were not looking after their own children (Emerson et al, 2005). This figure conforms with the findings of other studies of parents with learning disabilities world-wide, where child removal rates of 40–60% are consistently reported (McConnell et al, 2002). It was in the context of this stark mismatch between policy and practice that the Baring Foundation commissioned a mapping study of the support available to parents with learning disabilities and their children. This article provides an overview of some of the key findings of the project, with a particular focus on examples of positive practice identified and an exploration of what might facilitate the spread of such positive practice in the future. METHODS In order to maximise the scope of this relatively small study, material was collected through: ● a review of the relevant literature ● consultation with an advisory group of 13 parents with learning disabilities – established in the local area to inform the project and its development at every stage ● a paper and Web-based questionnaire, developed through consultation and discussion with national experts and local professionals and promoted through relevant networks in all four countries of the UK, which aimed to locate services supporting parents with learning disabilities and to understand the support provided by them and the barriers encountered ● telephone interviews with 21 professionals who had completed questionnaires to gather fuller WITH LEARNING DISABILITIES AND THEIR CHILDREN information about the promising practice they described ● case study visits to six areas of the UK, purposively selected to reflect different geographical areas and types of positive practice highlighted, and including interviews or meetings with 17 parents with learning disabilities and a wide range of practitioners, advocates and service managers (a total of 26 different professionals and agencies) ● interviews with professionals and others involved with parents with learning disabilities and their children in the court system (including a judge, a solicitor, a guardian and a regional director of CAFCASS – Children and Family Court Advisory and Support Service). The survey responses (85 in total) were analysed thematically and by respondent group (including advocates, workers supporting adults with learning disabilities, workers in services supporting vulnerable parents). Professionals in children’s services were under-represented as questionnaire respondents in comparison with professionals involved with adult or learning difficulty services, prehaps because those working in child protection or allied services do not identify as providing support to parents with learning disabilities. Thirty parents were involved in the study overall (including the thirteen who formed a consultation group for the project), of whom twenty-five were mothers and five fathers, and two were from black or minority ethnic groups. FINDINGS Barriers to successful parenting Although the focus of the study was on identifying examples of positive practice, these examples need to be located in the context of the multiple barriers parents still confront in the struggle to show they can be ‘good enough’ parents to keep and bring up their children. Some of these barriers stem from prejudice and negative Learning Disability Review VOLUME 12 ISSUE 2 APRIL 2007 © Pavilion Publishing (Brighton) Limited 23 SINKING OR SWIMMING? SUPPORTING PARENTS WITH LEARNING DISABILITIES stereotypes about parents with learning disabilities (which are explored further below). Others arise from the historic tension for service providers, particularly social workers, between protecting children and upholding the rights of parents (McGaw & Newman, 2005). Child and family social workers, charged with protecting children’s welfare, have been concerned that the well-being of children living with parents with learning disabilities will almost inevitably be at risk; hence the disproportionate likelihood for parents that their children will be placed away from the family home. Professionals in services supporting adults with learning disabilities, by contrast, have wanted to ensure that adequate support is provided in order that they can parent successfully – so that their children are less likely to be removed. However, this apparent gulf – between upholding the rights of the parents and those of the child – may be more apparent than real. Parents with learning disabilities also want to promote and protect the welfare of their children – and they are more likely to be able to do so if they are assisted and supported appropriately (McGaw & Newman, 2005). Nonetheless, those participating in the study confirmed that, in their experience, parents with learning disabilities still confront a range of obstacles to receiving the support that they need in order to prove themselves ‘good enough’ parents. They included the following. Negative stereotypes and assumptions Such stereotypes represented such parents as incompetent, unable to understand their children’s needs or learn skills quickly enough to meet them; in short, they were never going to be ‘good enough’ parents. Fixed ideas about what should happen to their children The Children Act 1989 makes it clear that children should be supported in their own family wherever possible. But professionals supporting parents with learning disabilities observed that staff in children 24 AND THEIR CHILDREN and families social work teams, responsible for child protection, tended to have other ideas. One psychologist commented: ‘[They] do not have a concept of ongoing support to mitigate the effects of a disability.…[They] give the appearance of just wanting to get the child placed with other parents as soon as possible’. Lack of consistency and clarity in what constituted ‘good’ parenting Parents were often in contact with numerous different professionals (Woodhouse et al, 2001 reported 23 distinct teams of relevant professionals in their area). Often they had varying ideas and standards about different aspects of parenting, which could be hopelessly confusing for the parents. Examples ranged from simple issues (such as whether a dummy was acceptable) to more complex ones. For example, one mother in our study had been both praised and criticised by different workers for leaving her child with her mother one day a week in order to attend college. Parents’ lack of engagement with children’s and family services Parents’ fear of having their children removed from them could often result in their taking a deliberate stance against services and professionals who they felt were threatening their family (particularly when they had had children removed in the past). Where parents adopted an apparently adversarial position of this kind, and failed to engage with children and family services, a vicious circle could ensue, in which children and family services subsequently became even more concerned about their parenting ability. Late or crisis-point referrals Some parents with learning disabilities who became known to children and family services had, until that point, not been in contact with local learning disability services. This might be because they had only a ‘mild’ learning disability and had managed without specialist help until they became parents. Learning Disability Review VOLUME 12 ISSUE 2 APRIL 2007 © Pavilion Publishing (Brighton) Limited SINKING OR SWIMMING? SUPPORTING PARENTS Professionals like midwives or health visitors in mainstream services were often not equipped to identify such parents as having learning disabilities, and were unaware of their potential support needs (Green & Vetere, 2002). Consequently, parents were often referred to adult and specialist support services only at crisis point, by which time it could be too late for them to receive the support needed, with the result that their children were placed away from the family home. Inadequate resources and eligibility criteria Lack of resources often inhibited provision of appropriate levels of service for parents with learning disabilities. Many parents with learning disabilities did not reach local thresholds for community care services or support to help them bring up their children, and showed up on services’ ‘radar’ only if their children were seen as children in need or as being at risk. Strategies to support parents with learning disabilities Despite all the barriers to provision of adequate support to parents with learning disabilities, our study revealed substantial enthusiasm and commitment on the part of professionals and services to developing strategies to overcome them. Individuals and agencies described a wide range of initiatives and interventions to help adults with learning disabilities in their local areas to ‘parent with support’. We have grouped these under 10 broad headings (Box 1) and discuss them in turn below. Identifying parents with learning disabilities Llewellyn and colleagues (1999) highlight the need for mainstream services to be better equipped to identify and support parents with learning disabilities. Staff involved in this study were using a number of strategies to raise awareness in generic, mainstream services about parents with learning disabilities and their support needs, in order to facilitate their early identification and support. WITH BOX 1 LEARNING DISABILITIES AND THEIR CHILDREN STRATEGIES TO SUPPORT PARENTS LEARNING DISABILITIES WITH ● Identifying parents with learning disabilities ● Appropriate antenatal support ● Assessing parents’ support needs ● Helping parents acquire the skills and knowledge they need ● Providing the right support ● Parenting groups ● Helping parents to engage with other agencies ● Multi-agency working ● Advocacy ● Child protection and the courts They were: ● producing leaflets describing the support available from local services for parents with learning disabilities ● proactively networking with a wide range of professionals, including solicitors and health workers ● holding information days for parents – and for other professionals ● providing training ● attending multi-agency groups and raising the question of whether parents might have a learning disability ● developing clear protocols/pathways/referral processes, to be shared explicitly with staff in other agencies. In some areas, screening tools had been developed to help staff identify whether an individual had a learning disability (McDonnell & Hames, 2005). Elsewhere, a pack had been developed to support midwives in the same process, while other areas had been undertaking ‘awareness training’, often copresented by parents, about learning disability and its impact on parenting (Mencap, 2005). Learning Disability Review VOLUME 12 ISSUE 2 APRIL 2007 © Pavilion Publishing (Brighton) Limited 25 SINKING OR SWIMMING? SUPPORTING PARENTS WITH LEARNING DISABILITIES Appropriate antenatal support Staff supporting parents with learning disabilities felt that pro-active, one-to-one work with parents should begin in the sixteenth week of pregnancy. Community nurses were needed to help parents understand the information provided by midwives, so they could develop the required baby care and other skills. Parents also needed support if they were to attend mainstream antenatal classes, where they could otherwise feel that they ‘didn’t fit in’. In one area, the local learning disability service ran a special antenatal class for expectant parents in conjunction with local midwives. These were seen as particularly valuable for parents who were frightened that their children might be removed from them. Elsewhere, staff described how they had been raising awareness about parents with learning disabilities and their support needs before the birth of their child through: ● involvement of midwives and maternity service staff in development of local protocols and pathways ● development of a local ‘maternity alliance’ (involving all relevant professionals) ● provision of information about the support available to parents with learning disabilities ● training for midwives about the particular issues confronting parents with learning disabilities, and their resulting support needs Assessing parents’ support needs Most professionals were clear that, for assessments to be maximally useful in determining the most appropriate support for individual parents, they needed to be based on competency (rather than IQ) and to take account of parents’ existing skills. They also needed to be holistic and to pay attention to the family’s wider social context, including the impact of their often poor environmental circumstances, stress and social isolation on their parenting (Feldman et al, 2002; McGaha, 2002; McGaw & Newman, 2005). Professionals supporting parents with learning disabilities were using a wide variety of strategies to assess their support needs. Among respondents to 26 AND THEIR CHILDREN the Web questionnaire, the Parent Assessment Manual (McGaw et al, 1998) was cited most frequently. Respondents also used a range of psychometric assessments (see McGaw & Newman, 2005 for full details of the range available). Assessments by speech and language therapists (to maximise effective communication with parents) and occupational therapists were also mentioned, along with community care assessments and joint assessments with children’s services. Assessments were also undertaken, or informed, by home visits and getting to know parents more informally. Helping parents acquire the skills and knowledge they need Undertaking a competency-based assessment of the skills and understanding individual parents already have should make it easier to identify the particular skills and knowledge they still require to parent successfully. There is now a good deal of information available on different approaches to skills training generally, and for parents with learning disabilities in particular. McGaw and Newman (2005) provide a helpful overview of different interventions. Effective skills training needs to be carried out in parents’ own homes, using the actual equipment they will use with their baby, but very often parents had to go to a residential assessment centre away from home. As they pointed out to us, this meant that they lost contact with professionals they had learned to trust. Being away from home for substantial periods of time also caused further distractions from focusing on learning how to parent, including anxiety about the risk of losing a job, worry about pets and the security of the family home, and infrequent access to family and friends who mattered and who might normally support them. All these factors worked against their performing well, just when they needed to. Staff in our study reported a range of strategies to help the parents they worked with to develop the skills and knowledge they needed, including: ● clear communication, ensuring that parents have understood what they have been told Learning Disability Review VOLUME 12 ISSUE 2 APRIL 2007 © Pavilion Publishing (Brighton) Limited SINKING OR SWIMMING? SUPPORTING PARENTS ● use of role play, modelling and videoing the parent and professional undertaking a task, for discussion and reflection ● step-by-step pictures showing how to undertake a task WITH LEARNING DISABILITIES AND THEIR CHILDREN improved their social networks, self-esteem and ability to challenge discriminatory views of themselves. A wide variety of professionals from different backgrounds were involved in the provision of these groups, including learning disability nurses, ● repeating topics regularly and offering opportunities for frequent practice ● providing/developing personalised ‘props’, such as finding a container which will hold the right amount of milk for the child, so that the parent does not have to measure it out every time ● working with parents themselves to develop helpful resources. Providing the right support Parents in this study, and elsewhere (for example West Berkshire – Mencap, 2004) identified a wide range of areas in which they might need support: getting children to do what they needed to, helping with homework, trying to explain things to children, managing children’s behaviour, being patient, keeping children safe, going to parents’ evenings, understanding what professionals said, help with transport, paperwork, managing finances and practical tasks around the home, dealing with harassment, bullying and protecting themselves. BOX 2 THE INGREDIENTS SUPPORT’ OF ‘THE RIGHT Professionals described the support they tried to provide to parents with learning disabilities in the following ways ● Listen to them and support them emotionally ● Work at developing a relationship with parents who might be reticent or afraid to engage with services ● Provide positive praise for achievements and develop parents’ self-esteem ● Be creative and ‘think outside the box’ to find and develop strategies to support individual parents in different ways ● Break tasks down into small steps ● Communicate clearly ● Have a non-judgemental attitude ● Refer the child/ren back to the parent, so Parents in the study were clear on how they wanted their supporters to operate. that the parent remains in control ● Be honest and clear about what is expected ‘Take feedback… Listen… Pay attention… Do what you ask… Not judge us… Have confidence in us and trust we can do it…’ This was reflected in the way that professionals described the support they aimed to provide (Box 2). ● Consult with, and follow, advice from appropriate experts (such as a health visitor) ● Work in a consistent way with other staff involved with the family ● Have knowledge of child development ‘It’s about letting them realise that you’re listening to them and taking them seriously… not bossing or judging, just being on their side. (Support worker) Parenting groups Parents’ groups were valued by both parents and professionals alike. The latter recognised them as a cost-effective method of supporting parents which ● Pay close attention to detail, for example the amount of medication needed by a sick child ● Understand the boundaries of their role (to support parents rather than do tasks for them) ● Remain alert to child protection concerns Learning Disability Review VOLUME 12 ISSUE 2 APRIL 2007 © Pavilion Publishing (Brighton) Limited 27 SINKING OR SWIMMING? SUPPORTING PARENTS WITH LEARNING DISABILITIES occupational therapists, child protection workers, psychologists, social workers, portage workers and advocates. One group involved in our study was initiated by an advocacy organisation, while others were run in conjunction with Sure Start. The existence of ongoing group support meant that workers could remain vigilant about potential child protection concerns while parents could access informal discussions with different professionals about issues of concern to them. In some places, parents had been told about a group by other parents who already attended, rather than directly by service staff. This meant that professionals could provide informal support to parents with learning disabilities who were not themselves in direct contact with services. In two of the areas visited, groups were being run by the parents themselves and becoming independent from the services which had set them up. Professionals and parents involved with parenting groups in our study highlighted what was necessary to make them a success (see Box 3). Helping parents to engage with other agencies Engaging with children and families services is often a major fear for parents with learning disabilities. Staff in our study described how they were supporting parents to interact with other agencies, by developing positive relations with them and providing them with ongoing emotional support. ‘[We try to] build parents’ confidence to enable them to slowly begin to liaise with agencies themselves with your support, only pulling back when the parent feels confident in doing so.’ (Advocate) Staff described a number of strategies which they had found helpful in supporting parents to engage positively with local services. Providing parents with photographs (along with careful explanations of each worker’s role) could help them to remember the different professionals involved with them, and what they were doing. Accessible information, broken down into small chunks as needed, together with the time and support to understand it, was 28 BOX 3 AND THEIR CHILDREN WHAT MAKES FOR A SUCCESSFUL PARENTING GROUP? ● A neutral venue, not associated with children and families services ● A regular day and time ● Provide transport ● Have a structure and ground rules ● Enable parents to relax, feel safe in the group and ‘have a laugh’ ● Enable parents to share their experiences with each other (eg parents of older children sharing advice about drinks which do not contain e numbers, or how to negotiate with children’s schools) ● Support parents of school-age children (as many services support families only until children attend school) ● Reduce isolation for parents (in one service two single mothers spent Christmas together after meeting at the group) ● May empower parents to go on to act as trainers and consultants for services crucial. Some parents did not ‘feel comfortable’ in mainstream groups such as antenatal and NCT (National Childbirth Trust) classes and Sure Start. Professionals in services supporting parents with learning disabilities were doing a range of things to address this issue: providing awareness raising or communication training for staff in mainstream services, running groups in conjunction with HomeStart and Sure Start, supporting parents to attend meetings, local groups or a toy library, mapping local services for parents and children in an accessible booklet to encourage them to use them. Multi-agency working ‘[Multi-agency working means] that parents know what is happening. All agencies are saying the same things.We learn from each other. Parents are clearer Learning Disability Review VOLUME 12 ISSUE 2 APRIL 2007 © Pavilion Publishing (Brighton) Limited SINKING OR SWIMMING? SUPPORTING PARENTS about what is expected from them. Agencies also have better understanding of each other’s way of working and areas of responsibility.’ (Speech therapist) Co-ordinating multi-agency support is particularly important for parents with learning disabilities where there are a large number of agencies involved in supporting families (Booth, 2003; English, 2000). Close collaboration between children and family services and adult services is especially critical to appropriate and effective support so that parents receive consistent, and not conflicting, advice (McBrien & Power, 2002). Staff in services supporting parents with learning disabilities were sustaining multi-agency working in a range of ways, by: ● ensuring that a contact person from the team specifically supporting parents with learning disabilities was available to provide advice and information to colleagues elsewhere as needed ● giving other agencies and professionals ideas on approaches and tools to support parents’ skill development ● raising awareness of parenting issues by establishing or attending relevant forums ● taking on the role of keyworker (acting as the main worker to liaise with the parents and report to the various services involved with them). A number of areas had developed local frameworks for appropriate services with joint protocols and care pathways (including eligibility and referrals, roles, responsibilities and accountabilities, communication, and joint training and development) to facilitate the different agencies’ contributions to supporting parents with learning disabilities, along the lines suggested by Morris (2003). The involvement of children and families services in the development of such protocols is crucial if the gulf between child protection and adult learning disability support services is to be bridged, and consistency and collaboration between them, in the best interests of both children and parents, are to be ensured. WITH LEARNING DISABILITIES AND THEIR CHILDREN Advocacy Advocates, whether paid or voluntary, can play a critical role in supporting parents with learning disabilities, particularly when they are involved with the child protection or court systems. Parents in our study valued the support they provided. ‘[They] help out with writing letters; argue their points across; [are] good at problem solving and keeping social services on their toes.’ One advocate, for their part, described their role as: ‘enlightening professionals about upholding people’s rights, explaining people’s access needs and their right to have them upheld, and working in a personcentred way which many professionals are not wholly taking on board’. A number of advocates specifically cited the work of Tim and Wendy Booth (on advocacy support for parents with learning disabilities; Booth & Booth, 1998, 1999) to illustrate their role, or referred to guidelines on involvement of advocates in child protection (Lindley & Richards, 2002). They aimed to support parents to make their own choices and have their voices heard. They were clear that they themselves were independent of the services supporting the parents, and so could negotiate with all parties, while being able to challenge services when appropriate. They often had an understanding of both children and families services, as well as services supporting adults with learning disabilities. Child protection and the courts Staff supporting parents with learning disabilities were frequently involved in the child protection system. They commented on how parents with learning disabilities were disadvantaged during the child protection and judicial processes by the way the systems worked (for example the rules of evidence and procedure, the inadequacy, and lack of availability, of support services and parents’ lack of understanding of the process). Parents who had been through the child protection process often felt Learning Disability Review VOLUME 12 ISSUE 2 APRIL 2007 © Pavilion Publishing (Brighton) Limited 29 SINKING OR SWIMMING? SUPPORTING PARENTS WITH LEARNING DISABILITIES that social workers assumed they could not be successful parents and just wanted to take their children away. ‘Social workers have all the power. As a parent you are there, alone and not listened to.’ Many professionals felt that an advocate should be available to parents as soon as the child protection process was initiated, in order to remind people to communicate appropriately and to ensure that issues were explained clearly, to support parents to speak, to ensure that parents had access to reports and time to discuss them, to reinforce important messages from their legal team, and to explain what was happening in court and provide emotional support to the parents. A number of strategies had been developed in different areas to make the child protection process more accessible to parents with learning disabilities, including: ● developing accessible leaflets/videos about the child protection process ● producing an accessible information sheet explaining confidentiality ● ensuring that there was a comprehensive, positive, competency-promoting assessment of parents’ skills and abilities, as well as of their support needs ● providing parents with pictures of everyone at the child protection meetings/judicial proceedings ● ensuring that parents understood each professional’s role ● holding the child protection conference away from social services offices ● making the child protection conference more friendly through small gestures such as providing everyone involved with refreshments ● developing guidance/a protocol for professionals on supporting parents to engage with the child protection process. Some solicitors and judges were similarly attempting to support parents through the judicial system. One 30 AND THEIR CHILDREN solicitor, for example, commented on the importance of ensuring that the most appropriate assessments were put before the court, and of slowing down the court process so that parents were given the chance to show whether they could develop the skills and knowledge they needed. A family court judge stressed the need for courts to adapt and organise themselves so that they were more welcoming and accessible. CONCLUSION So what is needed to facilitate a shift away from the negative assumptions, attitudes and barriers experienced by parents with learning disabilities as they struggle to be ‘good enough’ parents to their children? What needs to be done to enable them to parent with support? The findings of our research underline the critical importance of providing early support, which can lessen concerns about child protection, reduce the stress on parents, boost their self-confidence and enhance their ability to parent successfully. There is now a good deal of evidence on ‘what works’ to support parents with learning disabilities effectively (for example McGaw & Newman, 2005; SCARE, 2005; Tarleton et al, 2006). But a number of hurdles still stand in the way. Currently, there remains a huge gulf between how children’s and adults’ services respond to the needs of parents with learning disabilities and their children. The forthcoming national practice guidance for those working in this area will, therefore, be welcome (DoH/DfES, forthcoming). At the same time, some sharing of examples on how local eligibility criteria for community care services can operate, to include parenting support (as recommended by the Fair Access to Care Services Guidance, DoH, 2002), would be helpful. Provision of future funding for advocacy support for parents with learning disabilities, particularly those involved in child protection and judicial processes, is also critical, as the funding provided for advocacy following the Valuing People White Paper in England (DoH, 2001) draws to a close. Dissemination of easy to understand information, such as You and Learning Disability Review VOLUME 12 ISSUE 2 APRIL 2007 © Pavilion Publishing (Brighton) Limited SINKING OR SWIMMING? SUPPORTING PARENTS Your Baby (Affleck & Baker, 2004) is vital, if parents with learning disabilities are not to be disadvantaged in access to useful baby care information. Appropriate training for staff needs to be easily available. Those working in generic and family support services need help in identifying and supporting parents with learning disabilities; staff working in specialist adult learning disability services want training in child protection. Widespread training in undertaking competencybased assessments, like the Parent Assessment Manual (McGaw et al, 1998), is also needed. At the grassroots, effective and systematic links are needed between generic services (such as maternity services, doctors, schools, and mainstream parenting projects like Sure Start and Home-Start) and specialist learning disability teams, so that services do not have to wait for problems to arise before parents can be assessed on their needs for support. At practitioner level, a national network is needed to share good practice and ideas for supporting parents with learning disabilities appropriately. Without joined-up thinking (including at the level of the various central government departments involved) and multi-agency working, it may continue to be hard to ensure that parents with learning disabilities (and their children) are not sinking, but swimming. Discussion points ● What kinds of difficulty do parents with learning disabilities say they experience? ● What kind of support do they want? Is it available to them? ● What kind of support do they not like? Why? ● Are parents with learning disabilities making use of local mainstream family support services like Home-Start and Sure Start? If not, why not? ● Is advocacy available to support parents with learning disabilities in your area (especially during child protection or judicial processes)? ● What new issues have parents confronted as their children have got older? What has helped with these? ● Have parents with learning disabilities from black and minority ethnic communities (about WITH LEARNING DISABILITIES AND THEIR CHILDREN whom very little has been written) had different experiences, or wanted different kinds of support, from their white British counterparts? Key learning points ● There are a range of barriers to provision of appropriate support to parents with learning disabilities, including negative, or stereotypical, attitudes about them on the part of staff in some services. ● Many professionals are trying to help parents overcome these barriers so that they can ‘parent with support’. ● To achieve this, they are raising awareness of parents with learning disabilities and their support needs with non learning disability specialist services, developing multiprofessional and multi-agency support for them and their families and empowering parents themselves. ● Effective support involves a wide range of strategies, including early identification of parents, support during pregnancy, assessment of support needs, skills training, help at home, parenting groups, help to engage with children and family services, and multi-agency working. ● Easy to understand information on all aspects of parenting and advocacy support are also critical, especially during child protection and judicial proceedings. ● Professionals working in services for adults with learning disabilities need training in child protection issues; those involved in children’s, or generic, services need training about adults with learning disabilities and their support needs. ● Many adults with learning disabilities are deemed ‘too able’ to qualify for the support services they need. Eligibility criteria for local services need to take account of their additional needs for support for parenting. References Affleck F & Baker S (2004) You and Your Baby. Leeds: CHANGE. Learning Disability Review VOLUME 12 ISSUE 2 APRIL 2007 © Pavilion Publishing (Brighton) Limited 31 SINKING OR SWIMMING? SUPPORTING PARENTS WITH LEARNING DISABILITIES AND THEIR CHILDREN Booth T (2000) Parents with learning difficulties, child protection and the courts. Representing Children 13 (3) 175–88. McBrien J & Power M (2002) Professional attitudes to supporting parents with learning difficulties. Tizard Learning Disability Review 7 (3) 16–22. Booth T (2003) Parents with learning difficulties and the stolen generation. Journal of Learning Disabilities 7 (3) 203–9. McConnell D, Llewellyn G & Ferronato L (2002) Disability and decision making in Australian care proceedings. International Journal of Law, Policy and the Family 16 270–99. Booth T & Booth W (1998) Advocacy for Parents with Learning Difficulties: Developing advocacy support. York: Joseph Rowntree Foundation. Booth T & Booth W (1999) Parents Together: action research and advocacy support for parents with learning difficulties. Health & Social Care in the Community 7 (6) 464–74. Booth T, Booth W & McConnell D (2005) Care proceedings and parents with learning difficulties: comparative prevalence and outcomes in an English and Australian court sample. Child and Family Social Work 10 (4) 353–60. Department of Health (2001) Valuing People: A New Strategy for Learning Disability for the 21st Century. London: The Stationery Office. Department of Health (2002) Fair Access to Care Services. www.dh.gov.uk. Department of Health & Department for Education and Skills (forthcoming) Good Practice Guidance on Working with Parents with a Learning Disability. Available at www.valuingpeople.gov.uk. Emerson E, Malam S, Davies I & Spencer K (2005) Adults with Learning Difficulties in England 2003/4. www.ic.nhs.uk/pubs/learndiff2004. English S (2000) Parents in partnership. Learning Disability Practice 3 (2) 14–8. Feldman MA, Varghese J, Ramsay J & Rajska D (2002) Relationships between social support, stress and mother-child interactions in mothers with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities 15 314–23. McDonnell P & Hames A (2005) Designing and piloting a screening tool relating to the assessment of parents with suspected learning difficulties. Clinical Psychology 46. McGaha CG (2002) Development of parenting skills in individuals with an intellectual impairment: an epigenetic explanation. Disability and Society 17 (1) 81–91. McGaw S (1997) Practical support for parents with learning disabilities. In: J O’Hara & A Sperlinger (Eds) (1997) Adults with Learning Disabilities. Chichester: John Wiley & Sons. McGaw S, Beckley K, Connolly N & Ball K (1998) Parent Assessment Manual. Truro: Trecare NHS Trust. www.cornwall.nhs.uk/specialparentingservices/patientas sessmentmanual.asp. McGaw S & Newman T (2005) What Works for Parents with Learning Disabilities? Ilford: Barnardo’s. Mencap (2005) Making the Difference: A training pack for organisations working with parents with a learning disability. The Parenting Fund/ The Ann Craft Trust. Morris J (2003) The Right Support: Report of the Task Force on Supporting Disabled Adults in their Parenting Role. York: Joseph Rowntree Foundation. SCARE (2005) Helping Parents with Learning Disabilities in their Role in Parents. London: Social Care Institute for Excellence. Scottish Executive (2000) The Same as You? Edinburgh: The Stationery Office. Green G & Vetere A (2002) Parenting, learning disabilities and inequality: can systemic thinking help? Clinical Psychology Forum 14 9–12. Tarleton B, Ward L & Howarth J (2006) Finding the Right Support? A review of issues and positive practice in supporting parents with learning difficulties and their children. London: The Baring Foundation. Lindley B & Richards M (2002) Protocol on Advice and Advocacy for Parents (Child Protection). Cambridge: Centre for Family Research. West Berkshire Mencap (2004) Partners in Parenting: An audit of services for parents with learning disabilities in West Berkshire. West Berkshire Mencap. Llewellyn G, McConnell D, Cant R & Westbrook M (1999) Support network of mothers with an intellectual disability: an exploratory study. Journal of Intellectual and Developmental Disability 24 (1) 7–26. Woodhouse A, Green G & Davies S (2001) Parents with learning disabilities: service audit and development. British Journal of Learning Disabilities 29 (4) 128–32. 32 Learning Disability Review VOLUME 12 ISSUE 2 APRIL 2007 © Pavilion Publishing (Brighton) Limited