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Chair, afternoon session:
Jim Blair, President of the Intellectual Disability Forum of the Royal Society of Medicine.

Every family matters: The right to a family life?
Philippa Russell, chair, Standing Commission on carers, formerly commissioner with the Disability Rights Commission.

This is an opportunity for us to ask ourselves whether families where there are learning and intellectual disabilities can make best use of the opportunities which exist.

Introducing the Children's Plan late last year the Prime Minister said that our aim is to make this the best place in the world for all our children and young people to grow up in; unfortunately OECD and other reports tell us that we do not seem to be doing well in producing happy successful children. We must put parents' views at the heart of government and find new ways of engaging with families. Sadly parents with intellectual disabilities are not always seen as active citizens, and are not part of programmes which might support them.

Parents with learning disabilities may not have access to mainstream parenting services. They and similarly disabled family carers experience multiple barriers in achieving the practical and emotional support which they need in order to ensure that their children develop well and that they are confident and happy parents. Expectations of their parenting skills are changing but still limited, and the skills of my own daughter with three degrees and a new baby also leave something to be desired. Parents with such disabilities are more likely to be in poverty, and there is a greater risk of their children being taken into public care. The courts are sometimes unsure of why such children were removed, and what might have been done to prevent it. The poor integration of children's and adult social care services may result in duplication of services, which may in any case have been targeted inappropriately.

The Children's Plan promises a Parents' Charter, specifying minimum levels of support, and Family Pathfinders and Keyworker pilots for families which are hard to reach. It will be important to avoid stigmatising such families. "You're not invited to parent education classes unless somebody thinks you're doing something wrong". They are of course for families with difficulties, not for families which cause difficulties.

What works for these parents? Certainly peer support - contact with families already receiving the help they need. Parents with learning disabilities can and do develop long-term parenting skills, if they are included in services such as Sure Start, child care, parent education and other programmes such as The National Literacy Trust and ABeCeDarian . We must be sure that they know about these programmes and how to access them. Help from within the family is not always available; grandparents can be invaluable in this regard.

School-based Parent Support Advisers will be very important in helping parents to develop literacy skills, and in facilitating participation; it is not unusual for schools to be critical of learning disabled parents, who then naturally become reluctant to engage in school activities which could benefit their families. Personal Progress Records of children's development and of the achievements of their parents will be kept, and available to read on the internet. The development of Keyworkers and and Lead Professional roles will be welcomed by all parents, and priority access for learning disabled parents to high quality early years education and child care is an important advantage which must be targeted carefully.

The New Deal for Carers , launched in June this year and promised in Our Health, Our Care, Our Say in 2006, includes The National Strategy for Carers - 'Carers at the heart of 21st Century families and communities' (who may be parents or any motivated person within a family or otherwise), offering new opportunities to parents with learning disabilities within wider policies to improve the lives of the nation's children. Carers Learning Online comprises an Expert Carers Programme of instruction, which will be partly web-based. A National Helpline and information service will direct parents and carers to sources of help, and there will be a major investment in respite breaks from caring and in family support.

The Strategy sits alongside the 'Independent Living Review' , 'Putting People First' and 'Valuing People Now' . Many people with learning disabilities, usually seen as recipients of care, now have a caring role, and there is an emphasis on recognition of the individual, practical and emotional support and valuing the dignity of parents and family carers as equal citizens. Despite this they often claim that they are regarded as inadequate, being judged by a different standard than the 'normal', who face similar difficulties as we know.

Are parents and carers with learning disabilities achieving the seven outcomes expected for adults social care services? These are:

Improved health and emotional well-being.
Improved quality of life.
Making a positive contribution. As an example, one family succeeded so well in the caring role that they offered training to others in need, including some who were not disabled.
Choice and control.
Freedom from discrimination.
Economic well-being.
Personal dignity.

The style of support is important: professionals must not give the impression that they are taking over the home, and that the family are on trial. Trained volunteers can be particularly effective in this respect, having links to the local community. Low expectations may compromise the rights of parents with learning disabilities to a family life; sometimes consultation on this, the Disability Equality Duty , is lacking. Family carers with a learning disability often worry that asking for help can lead to doubts about the quality of their parenting.

New funding for breaks from caring and holidays rather than the traditional respite care are needed, as is an expert carers programme, taking account of the expressed needs of parents and using peer support and training. A common assessment framework for a whole family is planned, to replace the current assessments of individual family members. Services will be personalised with individual budgets or direct payments. There will be new guidance for the primary care team with an emphasis on physical and emotional well-being, and pilot schemes for the annual health checks of carers. The Standing Commission on Carers is tasked with delivering the National Strategy, an approach to supporting and valuing all families. Putting People First will ensure the recognition by local services of the learning disabled as parents and carers, with access to all necessary support services.

The speaker told the story of Jenny, the learning disabled single parent of a four year-old whose coping was compromised by a series of severe setbacks. She now has a keyworker who has ensured that she receives all the allowances to which she is entitled; she has the support of a health visitor, of members of a local support group and of other parents attending a Sure Start group. The case of Lucy, who is both physically and learning disabled, involved the fear of the removal of her children on whom she relied for practical support, her husband being unsupportive. Her older child was taking time off school to care for the younger one, and the school called in social services. Her GP and neighbours were supportive, and she now has daily help for herself and to get the children to school. Her son attends a young carers group and Lucy has joined an expert patients programme for people with arthritis. The family remain together.

The Children's Plan and the National Strategy on Carers promise wider policies to strengthen and value family life, but the acknowledgement of the importance of these through partnership boards and local area agreements and so on is vital. The well integrated, light touch support evidenced in my case studies is needed by families with and without disabilities.

Empowering learning disabled parents
Ruth Conley (RC), Steve McMullen and Clare Arnold (CA), Community Disabilities Team, North Shields

CA: Ruth is a parent who has been involved with the group for a number of years and she will tell you how the parents have done this.

RC: To set up our group we asked VODA (Voluntary Organisation for Disabled Adults) and the Learning Disabilities Federation for support; they helped us to write a rather complicated rules document so that we can all understand it, found us a place where we can meet, and advised us which charities we should apply to for funding. Unity Bank helped us to open our own account and The Community Learning Disabilities Team helped us to complete applications for funding. They have supported regular meetings for us to get together to share experiences, make new friendships and offer support to other mothers experiencing hardship or isolation. As parents with a learning disability we sometimes find it hard to make suitable friendships and are anxious about joining in parent and toddler groups, or taking our children to join social groups. This causes difficulties for our children in learning how to play with other children.

The first money we deposited in the bank was a service user involvement award, and since then we have received 2,500 from charitable organisations; this is helpful when we have to keep our children occupied during the school holidays, and enables us to arrange outings for the group with a support worker to prevent our getting lost and to overcome any difficulties. We now provide training for professional groups and charge for this service to university nursing students, The Community Learning Disabilities Team and the Safeguarding Children's Board training matrix. We have received invitations to speak at conferences organised by CHANGE (a national advocacy organisation which has produced accessible information in the area of pregnancy and parenting) in London and Leeds. As secretary for SMINT - Special Mothers in North Tyneside, a group now open to fathers with a learning disability - I am now confident in expressing my opinions; we are learning how to manage SMINT's money. As committee members we make our own decisions about group development and organise events, manage our money, develop other skills and learn our roles and responsibilities, sharing our experiences with other disabled parent groups. (Now Ruth displayed a number of sums, and asked for comments. She was not surprised when these mostly pointed out the few errors. "People usually find it hard to see what we're doing right").

Jo's story.
I was over the moon when Christopher was born, but life soon became hell. I had to move out of our home with my violent controlling partner; we kept on moving, and my family disowned me. A social worker referred me to the Community Learning Disabilities Team. I was scared, paranoid in case I was bullied or shouted at. With a lot of support my confidence improved; I went to parenting and assertiveness classes, where I learned to say no and much else, including how to deal with Christopher's behaviour problems. I made friends through the support group and got through a low point when Christopher had to live with his grandparents. We have a nice house now, and when we had difficulties with the neighbours I stood up to them in a way which was once impossible for me. Now that I have a new partner it's a different relationship where I am in control of my life, and this keeps Christopher and me safe. I believe in myself and feel confident. Christopher is off the social worker's list, I'm a good mum and I am proud of it.

Julie's story.
Life was horrible in a flat with nowhere for the kids to play, and I felt bad about myself. I felt low, and avoided contact with people in case they took my children away. I managed to care for them without support, and life felt better when we moved house and had some support from friends and the Community Learning Disabilities Team. I made friends through the women's group and the children's school, and did some courses. The parenting support service was helpful; I don't need it now, but I know that support is there should I need it. I feel confident and happy, and the children have their routines.

Steve's story.
I am a father who has a learning disability. My son lives with his mother (my ex-wife); he is now 11 years old, and we have a good relationship. My new partner had her first child removed when he was born; he is now adopted. When we found out she was pregnant with our child, social services decided that she could not look after our baby, due to the assessment they did when she had her first child. No assessments had ever been done with me. Social services went to court and got an emergency protection order that meant our daughter would also be removed when she was born. My partner and I had split up before the birth; our daughter was removed and now lives with a foster family. I wanted to be considered to care for our daughter, and was advised to get a solicitor. At court social services were ordered to get a parenting assessment done on me. It was done by an expert witness, and she recommended that a plan should be considered to allow my daughter to grow up in her family of origin, and that I have the capacity to look after my daughter as a lone parent. Social services asked the court if I could have a psychological assessment and a risk assessment to make sure I will be a good enough parent. I am in the middle of a risk assessment, and have not yet started with a psychology assessment. My daughter will be 7 months old now, and the final court hearing is set for December, meaning that my daughter will be over a year old when a decision is made about her future.
(At the time of publication the court process is still ongoing, with a final hearing deferred for yet further assessments).

Supporting parents with learning disabilities and their children.
Working together with Parents Network - Beth Tarleton, Bristol University

Recent literature around parents with learning difficulties tells us that above IQ 60 parenting ability is not impaired. However many parents have additional issues impacting on their ability to parent - having been abused themselves, mental health problems, poor housing, debt, and either lack of family support or over-supportive families. They may come into contact with social services on suspicion of neglect.

Programmes to educate parents can be very successful; advocacy support and the building of parents' self-esteem is vital, as is ongoing support which is family centred and preventative, building on their strengths. However many parents still report facing a system which does not understand them or know how to work with them.

The Good Practice Guidance on working with parents with a learning disability published in July 2007 draws on literature including parenting with support. This comprises accessible information and communication using clear speech and simple vocabulary, pictures or audiotapes where necessary, and clarification for the parents of processes which may involve many professionals and considerable complication. Support to meet the needs of both parents and children, long-term support where necessary and access to independent advocacy for parents are included. We should be using the Disability Equality Duty to make sure that the guidelines are used under the Disability Discrimination Act (now the Equality Act 2010). Relevant for professionals and volunteers, their purpose is to ensure as far as possible that children are maintained in their own homes. A review of the issues and positive practice, funded by the Baring Foundation, and a link to the Working together with Parents Network, is available for download from www.right-support.org.uk (accessed 8/3/2009).

We have explored the emergence of good practice. An advisory group of 13 parents told us about their lives and their interaction with professional and voluntary groups. 85 services completed a web-based questionnaire and we held 21 telephone interviews with professionals. In six areas case studies exhibited positive practice and included discussions with 17 parents. Barriers which are being overcome include negative attitudes and stereotypes about parents, a lack of understanding of adults with learning difficulties, poor understanding of support needs leading to late referrals, and lack of time, resources and service co-ordination. The expectation that parenting must be perfect, different concepts of parenting, and fixed ideas about the care and upbringing of children inhibit progress. Parents become disengaged from services if they meet negative expectations and experiences.

These barriers may be overcome by Parenting With Support. This provides ongoing proactive practical and emotional support, planning the present and future needs of both children and parents. This can be expected to narrow the gulf between child protection and the way services treat adults with learning difficulties. The key themes here are empowering patients with learning difficulties, raising awareness of parents with learning difficulties and their support needs in mainstream services, and developing multi-agency and multi-professional support. These are necessary at all stages of the parenting process, and may be continuous or intermittent.

Empowerment may be achieved by:
? The provision of easily digested information about parenting, in appropriate formats, e.g. pictorial, and DVDs to which they can refer when the need arises. ? The assessment of support needs based on the competency of parents, praise for their achievements and emotional and other support developing self esteem. Encouragement to use, develop and share skills (clear communication, creativity strategies such as role play, modelling, videos, step-by-step pictorial information, and personalised props). ? The frequent repetition of skills. ? Helping parents to understand what is expected and to respond positively to the support offered. ? Giving parents their voice by advocacy during child protection and and judicial processes and helping them to prepare for meetings and court appearances. ? Helping them to overcome issues such as poor housing and harassment which inhibit their ability to provide good parenting. ? The provision of support where children are taken into care.

Awareness of these needs may be raised by setting up multi-agency groups and attending wider networks to raise the profile of parents. Interested professionals need training, and literature such as information packs on the identification and support of parents with learning difficulties is needed, and local support services have to be provided. We can co-facilitate groups with mainstream colleagues, an example being antenatal classes for parents with learning difficulties, and we must support parents to attend such groups.

Multi-agency working can maximise the impact of support provided by means of detailed communication between workers, all messages being logged, a clear understanding of roles and boundaries and valuing the experience of others. Such information sharing of course requires the consent of parents. A keyworker system and keeping the number of workers as low as possible are important. There must be agreement on what represents good parenting for particular families. Shared goals and attitudes can be developed through joint training, and shared protocols and care pathways are vital for enabling the other objectives. Workers experienced in child protection or family support need training to understand adults with learning difficulties, and the converse is true. Child protection and reporting issues must always be kept in focus.

It is important that the concept of Parenting With Support is accepted at local and national levels. A national task force is raising awareness and working towards policy change and the implementation of the Good Practice Guidance. We promote networking and information sharing for professionals by newsletter, email updates, and a website with discussion and regional groups soon to be developed.

Details:

www.right-support.org.uk
Email: right-support@bristol.ac.uk
Tel. 0117 3310982

An equivalent network for parents will organise meetings in England and Scotland, with web pages and newsletters to share information and ideas. A list of members will be kept, and they will be helped to keep in touch with each other. Parents with learning difficulties will be represented on the task force.

Details:

www.changepeople.co.uk
Email: info@changepeople.co.uk
Tel. 0113 243 0202.

LD Caring Solutions - Shaping the future, learning from the past - parents sharing experiences with health professionals
Jim Blair,(JB) President of the Intellectual Disability Forum of the Royal Society of Medicine and Co-Facilitator of LD Caring Solutions with members Gwen Hunter, Edna White, Monica Stannard and Sarah Smith.

We teach health, social, and educational professionals at St. George's Hospital and Kingston University, an example of what universities should be doing. It is a model which can be adapted and used by others for other purposes. In our case parents and people with learning disabilities - the experts - help to make their visions of the future come true by getting involved in working with services for the learning disabled (hence LD); this includes addressing the negative attitudes of some professionals to their clients.

We launched ourselves as a group in September 2006, with funding from Mencap City Foundation and West Focus; the group is facilitated by a University Lecturer (myself) and a Deputy Director of Nursing. Within the group are 15 parents of people with learning disabilities from ages 5 to 55 with a range of complex health and social care needs. At a monthly meeting these parents share concerns, identify priorities and form collaborative partnerships with service providers to influence change. Action is key in our aim to drive services forward in partnership with the providers, and by meeting in a university carers can contribute freely, unconcerned about jeopardising those services. Please encourage the establishment of this model in universities near your place of work; the clinical involvement of lecturers will be enhanced.

Monica, a parent, speaks. "We and our son now aged 33 who has Down's syndrome have had substantial difficulties with professionals and with his educational needs. I got involved in the group with the hope that the future outlook for parents and their disabled children would be improved."

Gwen: "I have a son and daughter, both learning disabled and now living away from home; I am pleased to be able to bring suggestions from the group to the centres where they live."

Edna "My 55 year-old daughter with Down's syndrome had a very good life, including participation in the Special Olympics, until she was hospitalised five years ago. I joined the group because of the appalling care she received there, and now we are talking to people to ensure that it never happens again."

Sarah, a worker at the Down's Syndrome Heart Association: "My daughter with Down's syndrome, now aged 18, had successful heart surgery earlier in her life. She is fortunate to be of good intelligence and is at college. I echo the observations made by the other mothers; additionally it is clear that many parents of the disabled are unaware of the services available, may not be receiving the appropriate services, and are dealing with professionals who are unfamiliar with their needs. I hope that improvement will follow from the work of the group."

The parents discuss further with Jim.

We teach students how to identify that a patient has a learning disability; the appearance may or may not give an indication of this. Patient listening, to both patients and their parents, is key to understanding. We know that the students, those doing their initial training and those in continuing professional programmes, have become more interested from their questions and from feedback.

Jim: The expertise of our parents group is widely recognised - they received first prize for innovation from Kingston University. We meet with commissioners, campaign for better care homes, and highlight our concerns to people responsible for strategy development, attending the appropriate all-party committee at the House of Commons. We have advised the National Institute for Health and Clinical Excellence (NICE), the London Network of Nursing, the Nursing and Midwifery Council, the Health Care Commission and Valuing People Now. Interest in our current project Parents as Educators. in which we look at the impact on clinicians, has generated funding from a number of sources. We are writing for publication as well as for presentation at conferences, and lobbying is another part of our work. But more parent groups similar to ours are needed.

These are some of the mistaken notions which the learning disabled and their parents have encountered: 'They (healthcare professionals) say he doesn't feel pain' (Mother of a 22 year old son with autism).
'My daughter lost two stones in five weeks in hospital. It was as if she was a non-person. There was no named nurse and no named doctor.' (Mother of a 53 year-old daughter with Down's Syndrome).

Students have found the parent teaching informative, even inspiring, providing 'a real lived experience, insight and context, opening professional trained viewpoints'. Improving on textbook theory, parents are the experts in practice. The model can be adapted and delivered elsewhere than in the university setting. We are reviewing current practice, developing a training programme to prepare parents as educators, and evaluating parent education as it is delivered.
Parent teachers are now paid the lecturers' hourly rate; their suggestions are given equal value, and their knowledge is shared. We have made links and developed partnerships, even being asked to work in other universities, where we would like to see them develop their own parent teaching.

Getting it right for people with learning disabilities.
Jim Blair (JB), President of the Intellectual Disability Forum of the Royal Society of Medicine.

Mencap have published Death by Indifference, the story of the deaths of six learning disabled people which need not have happened, a story of professional negligence, incompetence and indifference. One, the daughter of a member of LD Caring Solutions, had the investigation of her cancer deferred because of her 'awkward behaviour' until only palliative care could be instituted. She was treated with an extreme lack of dignity while an in-patient.

In 2006 the Disability Rights Commission published in the report 'Closing the Gap'; one study showed that those with a learning disability have a 58 times greater liability of dying before the age of 50, due to a lack of evaluation, exploration, and assessment of the concerns. The Cornwall Report exposed poor clinical and social care.

National Service Frameworks have little relevance to those with a learning disability; as an example, this results in a higher death rate from cancer in these patients. Our November 2007 conference 'Turning evidence into better care for people with learning disabilities' aimed to pull together research evidence that can inform policy and workforce development in this field, to provide a platform Royal Colleges, the Equality and Human Rights Commission, Mencap and to encourage other stakeholders to sign up to an action plan and change strategy, and to establish a precedent that continued health inequalities are a basic denial of an individual's human rights.

L D Caring Solutions is about being action focused, advising and promoting ways of developing practice, and influencing the professional reaction to the issues of accountability, training and responsibility among health professionals. We aim to facilitate access to mainstream healthcare focusing on outcomes, to support the maintenance of specialist health services that address the health needs of people with learning disability, and to challenge professionals to respond to these needs and those of their families. We meet quarterly, plan a website, have published literature and have the cooperation of the Colleges of General Practitioners, Nursing, and Occupational Therapy and Mencap. We emphasise the responsibility and accountability of all who involve themselves in this work, and we provide training for it. The presentation and dissemination of Getting It Right material is important to us, and we offer ourselves for short (10 minute) slots at suitable meetings for this purpose. Our access to parliamentarians also enables the work. And we are aware that there are other aspects of disability - mental health, maternity, addiction - which need to Get It Right.

Discussion, afternoon session.

JW: Too often social services step into a pregnancy as late as 36 weeks, asking us to notify them of the baby's birth. This leaves us no time to provide our care and in particular to help them to be the good parents they would wish to be. Also midwives like to provide continuity of care, not only for one woman but even across generations, whereas I keep encountering different social workers dealing with one situation. CA: Not seldom a children's services assessment is made early in pregnancy, leaving the parents frightened of an adverse outcome throughout the pregnancy until the knock on the door comes shortly before the baby is due. (This was explained, if not excused, by the children's services focus on crisis intervention. It was also noted that there is little or no communication between health work - children's services - and social services. This should be overcome by the proposed common assessment framework, bringing in child and adult health and maternity services, and hopefully housing and other departments, employing a "How can we help this family?" rather than a bureaucratic approach. Here is a role for a keyworker. What if a baby is born prematurely, nobody being aware there is no support for the family?) An obstetrician - President of the Forum on Maternity and the Newborn - suggested holding regular meetings between all concerned professionals in one of the relevant institutions, and the attachment of a midwife to all children's centres, to ensure early awareness.

PF: Families can be referred early by anyone to Action for Children (formerly National Children's Home), who will then provide support during a pregnancy and up to the child's school age. Effective referral can also be made to Elfrida Rathbone). Every Child Matters: Change for Children, links to resources helping parents to develop assertiveness, self advocacy and other skills. Parents need to know that they will be treated with respect. A member of Deaf Parenting UK remarked that although self referral to social services is possible there is reluctance because of the fear that a new baby may be removed from the family; in the voluntary sector there is no such anxiety, and no stigma.

A Mencap worker complained of the boundaries which exist in location - the wrong side of the street - and in timing, as for example when a family copes adequately until there is a breakdown after the birth of the baby and social services come in, stay in touch for six months and then disappear. A plea was made from the panel for the integration of services across postcodes, enabling families to access services in all the areas of their need wherever they live.

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