The Valuing People White Paper (Department of Health 2001) recognised that people with learning disabilities can be good parents. However, it acknowledged that such parents are often socially and economically disadvantaged, can make heavy demands on child welfare services and are more likely to have their children looked after by local authorities. This means they may require considerable support.
The support that a parent with a learning disability may need to provide for his or her children and family can, however, cause dilemmas for support services. Who resources this support? What experiences do workers have in providing support? What understanding is there of the multiple difficulties being experienced by some of these vulnerable families?
Across the country parents with learning disabilities are supported in many different ways: by specialist support services, by children's services (with or without specialist support from learning disability services) or by learning disability services working alongside children's services. This article describes the elements of a service provided by the Community Learning Disabilities Team (CLDT) in North Tyneside.
The origins of the service
Parents with learning disability are among the most socially isolated in the community and, as a result, so are their children (Llewellen 1999). Six years ago members of CLDT were therefore asked to identify the number of clients with whom they were working who were parents. These clients were then asked if they were interested in meeting with other parents known to our services. A small group of four parents started to meet on a regular basis to share experiences, ideas and for social contact. This support group remains an important element of the service but over the intervening years developments have been added to the service as we strive to improve the support offered to parents (see Table 1).
These developments have been informed by the experiences of these parents and by research in this area (Booth and Booth 1994), Each of these elements of service provision will be discussed.
Parents support group
Setting up this group represented the beginning of the service. Initially this group met on a weekly basis to share experiences and for peer support. Social networking was an important element of the group.
Parents could access information and advice from the community staff that support the group and speakers were invited to the group at the parent's request. These speakers came from a range of other services providing information on a wide variety of topics, for example:
* Citizen's Advice Bureau
* Supported employment service
* Aromatherapy and massage
* Baby massage
* Credit union
* Specialist dental health service
* Advocacy service.
Personal development programme
Raising children with healthy self-esteem is an important goal for any parent but people with learning disabilities often have low self-esteem themselves (Llewellen 1999). Helping parents to develop self-esteem and confidence must be a priority as it forms the building blocks to the acquisition of new skills -- for example, those skills necessary for the care of children.
The parenting support service (PSS) has developed a personal development programme (PDP). which addresses a number of skill areas that have a relation to parenting and protection. The programme includes:
* Boosting self-esteem
* Assertiveness skills
* Childcare issues (one to five years)
* Assertive parenting: managing children with respect and nurturing self respect
* Parenting workshop: content determined by parents attending
The courses last from four to 12 sessions and each session is two hours long. Flexibility is built into the programme to allow a course to be extended if parents require more time to take on board new learning.
Creche facilities are provided and venues are accessible to minimise the need for support with transport. Future development of the programme will be determined by the needs of the parents using the service.
Outreach support
Llewellen (1999) argues that parents with a learning disability, and their children, can be helped to engage effectively with their community if appropriate support is provided in their day-to-day family lives. However, parents' need for support varies greatly. Some require ongoing long-term support throughout the childhood years. others need support only at times of transition. It is therefore important to tailor assistance to meet the needs of each family. This means that support workers often have to fulfil many roles. such as advocate, teacher, enabler, mediator, counsellor.
The PSS provides outreach support in a number of areas:
* Finance and benefits
* Housing
* Establishing routines
* Budgeting
* Access to community facilities
* Facilitating communication with all service providers: health, education, welfare and legal.
Advocacy support
Support workers are often called on to adopt advocacy roles. This may involve acting as witnesses, go-betweens, interpreters, scribes, sounding boards or mentors (Booth and Booth 1998).
The PSS supports parents in meetings with (for example) local authority departments. child protection services, teachers and schools. solicitors, health appointments. We also recognise our limitations in this area and refer families to independent advocacy services when required or requested.
Parenting skills assessments
The PSS has received many requests to complete parenting skills assessments with parents thought to have a learning disability. However, due to resource constraints there is a need to establish whether a person has a learning disability or not.
In relation to the number of referrals received. only around 50 per cent have a learning disability as determined by the Wechsler Adult Intelligence Scale rating (WAIS). Nonetheless it is social functioning rather than performance of standardised tests that determines whether people need specialised services (Gath 1995). Assessment thus covers areas of independent living skills. childcare and protection skills, physical and mental health and support networks.
Parenting care plans
If support is to be relevant, useful, and effective then those who are to receive this support should, as far as is possible, be involved in its planning, implementation and evaluation (Friedman 1993). The PSS thus places an emphasis on user and carer involvement in care planning and service delivery.
Parents with a learning disability and their family are at the centre of the care planning process and the PSS have implemented documentation to support this. This process also informs service development in relation to the needs of individuals, their families and the direction and content of the personal development programme and the parents support group.
Adult protection
Carroll (1994) summarises the literature concerning children who witness violence between parents and concludes that their emotional well-being is significantly harmed.
The PSS aims to promote the emotional well-being and self-esteem of the parents it serves thus equipping them to promote the emotional well-being of their children. Issues of protecting oneself from harm are raised within the personal development programme and parents support group and links made with relevant support agencies, for example with police liaison officers, woman's aid and solicitors. Domestic violence is a common problem encountered by the parents we work with and through the parents support group, parents feel empowered to provide support and advice to each other by drawing on their own experiences.
Child protection
Social supports are thought to cushion the impact of stress and negative life events (Llewellen 1999). However, as mentioned above, parents with learning disability are among the most socially isolated in our community. Research shows that socially isolated parents (with or without learning disability) are more prone to neglect and abuse their children (Seagull 1987).
The PSS participates in formal child protection procedures and processes to ensure children's protection from harm. We support parents in participating fully in, and achieving the tasks set out by the care team. We encourage and support parents to access local child and family support services and build local support networks such as Sure Start.
Training
Signpost for Success (Department of Health 1998) highlighted that parents with learning disabilities often require very skilled training and support. A range of knowledge and skills in the areas of assessing parental competence, teaching practical skills, and understanding the legal aspects of child protection are essential along with an awareness of agencies that can provide support and availability of resources (Culley and Genders 1999). However, parents with learning disabilities often have a significant number of professionals working with them at any one time. This can result in confusion and conflicting advice can be given as professionals work to different agendas.
In addition many community nurses (including RNLDs) do not feel that they have been provided with appropriate education to enable them to take on this role (Genders 2000). Opportunities thus need to be taken to address this issue and to raise the learning disability agenda in all joint training in which learning disability nurses participate, for example, child protection training. RNLD nurses can learn a great deal from their colleagues in this area of work as well as sharing their experience with others
The PSS shares its knowledge and experience with a variety of workers involved in supporting parents through regular workshops. We encourage our colleagues in other disciplines to look to people's strengths and abilities and to view difficulties more in terms of the family's social or environmental situation and not merely in terms of their learning disability. The PSS has also provided input to a postgraduate course in child protection at Northumbria University in the form of a half day workshop exploring issues of learning disability in relation to parenting. Negotiations for future workshops are planned with the course organisers of health visiting education.
Consultancy
The PSS receives enquiries on a regular basis from colleagues from a variety of disciplines. for support or advice. We are encouraged by the fact that professionals are willing to extend their knowledge and skills so they can meet the needs of parents with a learning disability without necessarily referring to a specialist service. The PSS has built up a library of resources, which can be accessed by anyone working with a parent with a learning disability
Service networks
Our colleagues in other disciplines are a valuable resource to our service. Opportunities to meet and share information and developments in other services, and also to influence developments in other services are of great importance.
Further development of the parenting support service
The Department of Health (2001) has stated that, rather than creating further specialist services, we should 'open up' mainstream services by providing the appropriate support for people with learning disabilities.
In developing this specialist service we have had the opportunity to develop an expertise in a very complex area of work. We now use this expertise to inform, support and encourage mainstream services to 'open up' and review their services in relation to accessibility to families where a parent has a learning disability.
We need to be flexible in the way we provide support to these services and use our skills to facilitate positive and effective communication between them and the parents we support. Providing training can address many of the issues that are encountered in relation to negative attitudes and lack of understanding of learning disability. It provides the opportunity to define roles and build networks, and it can create opportunities for more imaginative planning in relation to the care packages offered to families.
There are still some families with multiple and complex needs who require intense and possibly long-term support for which all services have problems in resourcing.
The PSS has recently secured funding from the Children's Fund to extend our service to provide greater support to parents with a learning disability to address issues of inclusion for their children. It will be an exciting piece of work that will bring new challenges, involve work with a wide range of agencies and create further opportunities for joint working to improve outcomes for the children of parents who have a learning disability.
Table 1 The elements of the service * Parents support group/ social networking * Personal development programme * Advocacy support * Parenting skills assessments * Parent care plans * Outreach support: everyday living skills and parenting skills * Adult protection * Child protection * Training * Consultancy * Service networks
References
Booth T. Booth W (1994) Parenting Under Pressure. Buckingham. Open University Press.
Booth T. Booth W (1998) Advocacy for Parents with Learning Difficulties: Developing advocacy support. Brighton, Pavilion Publishing.
Carroll J (1994) The protection of children exposed to marital violence. Child Abuse Review. 3, 6-14.
Culley L. Genders N (1999) Parenting by people with learning disabilities; The educational needs of the community nurse. Nurse Education Today. 19, 6, 502-508
Department of Health (2001) Valuing People: A new strategy of learning disability for the 21st century. London, DoH
Department of Health (1998) Signposts for Success. Wetherby. NHS Executive.
Friedman HL (1993) Promoting the health of adolescents in the United States of America: A global perspective. Journal of Adolescent Health. 14, 509-519.
Gath A (1995) Parents with Learning Disability. In: Reder P. Lucey C (1996) Assessment of Parenting: Psychiatric and psychological contributions. London, Routledge.
Genders N (2000) The Role of the Community Nurse (Learning Disability): Parenting by people with a learning disability. Leicester, De Montford University.
Liewellen G. (1999) Parents with Intellectual Disability and Older Children: Strategies for support workers. Melbourne, Australia, Government Department of Human Services, Disabilities Services Division.
Seagull EA (1987) Social support and child maltreatment: A review of the evidence. Child Abuse and Neglect. 11, 1, 41-52.
Clare Arnold RNMH is a senior Community nurse with the Community Learning Disability Team in North Tyneside, part of Northumbria Healthcare NHS Trust
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