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Guidance on care for parents with learning disabilities

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VOL: 103, ISSUE: 25, PAGE NO: 25

The government has published guidance on providing support to parents with learning disabilities (Department of Hea...

The government has published guidance on providing support to parents with learning disabilities (Department of Health and Department for Education and Skills, 2007).

This is aimed at health and social care professionals, allied health professionals, chief executives of NHS trusts and local authorities, and directors of adult and children's social services. It has been produced jointly by the DH and DfES, and outlines good practice on how adult and children's services should work together to improve support to parents with a learning disability and their children. It also includes a summary of relevant legislation and policy.

There are no official statistics on the number of people with learning disabilities in the UK but the charity Mencap believes it is around 1.5 million. Estimates of the number of parents with learning disabilities vary widely - from 23,000 to 250,000 - but there are increasing numbers of such parents who are in contact with services.

In about 50% of cases, parents with learning disabilities have their children taken into care, usually as a result of concerns for the children's well-being and/or an absence of appropriate support. Several agencies and professionals are involved in support, including community nurses, social workers, health visitors, midwives, psychologists, speech and language therapists, occupational therapists and advocates.

However, the new guidance says there is a lack of communication, cooperation and joint working both across adult and children's services, and between health and social services.

The number of people with a learning disability is expected to have risen by around 1% by 2016, and greater numbers will survive into adulthood and live longer. However, compared with people without a learning disability they are more likely to experience major illness, develop serious conditions at a younger age and die of them.

Learning disability nurses are in a good position to support individuals and their families. Some health professionals consulted during the preparation of this new guidance raised concerns that parents with learning disabilities often experienced undiagnosed mental health problems including postnatal depression, and that physical health problems also sometimes go undiagnosed.

Concerns have recently been raised about the quality of care given to these people. Healthcare Commission reports on trusts such as Merton and Sutton (HCC, 2007) identified a number of examples of care that do not meet government standards and concluded that staff were given inadequate training or inappropriate guidance. The new guidelines say some community learning disability nurses do not feel adequately prepared for this role by their pre or post-basic training.

The DH published its Valuing People white paper (DH, 2001) to help promote the rights of people with learning disabilities. Since then there have been a number of initiatives and guidance documents aimed at people with learning disabilities.

The new guidance says people with learning disabilities have the right to be supported in their parenting role, just as their children have the right to live in a safe and supportive environment. The purpose of this guidance is to:

- Help services improve support for parents with a learning disability and their children;

- Increase the chances of the children of parents with a learning disability to continue living with them in a positive and supportive environment that meets their needs.

Good-practice guidance is needed, says the report, because practitioners often experience difficulties supporting families affected by parental learning disability. Children of such parents who are in contact with social care services have high levels of needs, it says.

The guidance identifies five key features of good practice:

- Accessible information and communication;

- Clear and coordinated referral and assessment procedures and processes, eligibility criteria and care pathways;

- Support designed to meet the needs of parents and children based on assessments of their needs and strengths;

- Long-term support where necessary;

- Access to independent advocacy.

Accessible information is crucial to help parents and where possible should include easy-to-read leaflets, information on tapes/DVDs, fully accessible websites, and opportunities to talk to people face to face about services. Information about universal and specialist services should be made available in places where parents will be seen, such as GP surgeries, day centres, colleges and supported housing.

Clear and coordinated referral and assessment procedures are vital between health and social care providers to recognise support needs at an early stage of parenting and to anticipate needs that might arise at different stages of family life.

Adult and children's services, and health and social care, should agree protocols for referrals, assessments and care pathways to respond appropriately and promptly to both the parents' and their children's needs.

Good communication between different agencies will help in this area. Initiatives that have helped to promote better communication include designation of a community learning disability nurse to provide professional consultation to children's safeguarding teams.

Families that are affected by parental learning disabilities may benefit from many types of service including support in using universal antenatal and postnatal services, parent groups, courses in parenting skills, counselling and family planning services.

Self-advocacy support should be made available to parents to help build confidence and self-esteem, and to prevent parenting problems such as poor hygiene or failure to attend mother and baby groups.

The guidance also looks at good practice where safeguarding procedures are needed. It says that where there are concerns that children are at risk of significant harm, good practice will be promoted by:

- Information-sharing between relevant agencies and professionals (health and social care);

- Clarity about rights, roles and responsibilities, including the legislative basis for action and parents' entitlement to support under legislation;

- In-depth assessments;

- Involvement of parents and children, and the provision of independent advocacy.

Under the Children Act 1989 (The Stationery Office,1989), if a local authority suspects a child in their area is suffering or is at risk of suffering significant harm, it has a duty to make enquiries to find out whether action is required to safeguard or promote the child's welfare.

The guidance says it should be recognised that in many cases where there are risks of significant harm to children, parents usually face other difficulties in addition to their learning disability.

These may include mental health and/or physical health problems such as domestic violence and substance abuse. Assessments should therefore also include, where appropriate, specialist input on these issues, sometimes from nurses.

The guidance also deals with commissioning. Being able to support parents depends on a commissioning strategy jointly developed and agreed by adult and children's services.

This should encompass health, education, housing and social care services in both the statutory and voluntary/independent sectors.

The guidance says there is little evidence of effective joint working between adult and children's services. Children's services practitioners and adult learning disability workers rarely have a good working knowledge of each other's policy and legislative frameworks, leading to poor understanding of responsibilities and of parents' entitlements.

Finally, the guidance also contains several useful resources to help make information accessible, good-practice examples of joint protocols and care pathways, assessment tools, person-centred planning and parenting skills resources.

KEY FEATURES OF GOOD PRACTICE WITH PARENTS WITH LEARNING DISABILITIES

- Provide accessible information and communication;

- Ensure clear and coordinated referral and assessment procedures and processes, eligibility criteria and care pathways;

- Give support designed to meet the needs of parents and children based on assessments of their needs and strengths;

- Provide long-term support where necessary.

- Provide access to independent advocacy.

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