Supported parenting for people with learning difficulties: lessons from Wisconsin

Authors

Tim Booth
Professor of Social Policy, Department of Sociological Studies, the University of Sheffield.

Wendy Booth
Research Fellow, Department of Sociological Studies, the University of Sheffield.

The authors are currently working on an action research project funded by the Joseph Rowntree Foundation which aims to develop a local support network for parents with learning difficulties based on the principles of advocacy and self-help.

Background

Parents with learning difficulties too often receive short shrift from the child protection services. In 1991 Lancashire County Council were censured by the Local Government Ombudsman for failing to provide the level of counselling and support needed by a mother with learning difficulties (Local Government Ombudsman, 1991). This is not an isolated case. It represents a rare public example of what usually passes as private heartbreak.

There are signs, however, that more people are beginning to recognise the prejudicial nature of the treatment meted out to many of these parents. A new Manchester-based counselling project for birth parents who have had their children adopted reports that eight out of ten users have learning difficulties (Whitely, 1995). Values into Action, the national campaign for people with learning difficulties, reports an increase in calls from parents and has begun to speak out on their behalf (Valios, 1995).

Enable, the Scottish learning difficulties organisation, has expressed concern that local authorities are too quick to take a negative view of parents' capabilities. Mencap too is at last showing a willingness to face up to the issue (Viewpoint, 1995b). Reflecting on the implications of some recent placement decisions, an editorial in Community Care (1995) observed that once again 'the fear of the "learning difficulties" label and what it might mean has weighed more with a local authority (and the legal system) than the principles of partnership that the Children Act was supposed to entail'.

All the evidence points to high rates (40–60 per cent) for the removal of children from the family home, and such figures are often cited to support a general claim of parental inadequacy. Our research (Booth and Booth, 1994c) shows that such an interpretation forms an unreliable basis for child protection work. Children are frequently removed from their families for reasons other than parenting failure, including deficiencies in professional practices, services and supports (Booth and Booth, 1994b).

Two factors are particularly influential in tipping decisions against the parents. First, there is the widespread 'presumption of incompetence' which leads practitioners and the courts into making often ill-founded judgements about parents' inability to cope (Booth and Booth, 1996). Second, there is the emphasis currently given to the protection of children at the expense of their broader welfare needs and the support of their families (Farmer and Owen, 1993; Parton, 1991; Thorpe, 1995). These points need to be seen in the context of recent child protection research (Department of Health, 1995).

There is now a substantial body of evidence pointing to a disconcerting overreach of child protection procedures with many thousands of children being inappropriately sucked into the system each year. These children are drawn overwhelmingly from poor and disadvantaged families. The great majority are found to require no protective intervention and are more properly classed as children in need. But a narrow focus on the issue of abuse has led to these other needs being ignored.

Although the Children Act 1989 places a general duty on local authorities to promote the upbringing of such children by their families, research has shown that preventive services and support are rarely offered. Most receive no help of any kind beyond the Section 47 enquiry. This concentration of resources on child protection 'has prevented the policy shift towards the promotion of welfare promised by the Children Act' (Gibbons, 1995).

Parents with learning difficulties are unwitting victims of this imbalance in the approach to child welfare. For the great majority, parenting is an uphill struggle made all the more difficult by social and economic pressures known to undermine the coping abilities even of people who do not have learning difficulties. Few are likely to succeed without the right kind of support and too few receive it.

Indeed, becoming a parent often leads to the transfer of case management responsibilities from the learning difficulties team to the families and children team with a consequent loss of access to resources from the community care budget. In turn, the lack of Section 17 provision for children in need channels the professional response to such families down the child protection route where the presumption of incompetence heightens the likelihood of children being judged at risk of significant harm.

Even when support is provided, most commonly in family centres, it is often not geared to parents' learning characteristics. Their erratic attendance or apparent lack of commitment or failure to show progress is then seen as further evidence of parental inadequacy.

Almost fifty years ago, Michelson (1947) pointed out that parents with learning difficulties could be helped to give their children better care. 'Today's challenge', she declared, 'is to show how best it can be done.' A lot has been learned since then (see Booth and Booth, 1994c for a summary of the literature; also Booth and Booth, 1994a).

It is now known that training can improve the knowledge and skills of mothers in virtually all areas of parenting, but is less effective where parents are having to cope with external pressures in their lives (such as debt, bereavement, harassment) and are preoccupied with crises of day-to-day survival. Services need to be organised in such a way that parents are made to feel competent, have a say in solving their own problems, and feel in control of events. Support tends to be most effective when it is consistent, non-intrusive and non-threatening.

The failure of the child care services to heed these lessons amounts to a form of system abuse. System abuse refers to institutional attitudes, policies and practices that 'hurt children, harm family integrity or infringe basic rights' (Gil, 1982). It includes all processes that damage the families they are intended to support or protect (Cooper, Peterson and Meier, 1987). If the damaging effects of system abuse are to be avoided in the future, greater priority must be given to developing ways of supporting parents with learning difficulties in their parenting.

What is supported parenting?

Supported parenting is a principled approach to helping families headed by a parent or parents with learning difficulties. It is not about shoehorning families into existing services but about developing new forms of support that are responsive to their perceptions of their own needs.

Current work with these families is largely based on a 'deficit model' of service delivery which is resource-led and crisis-driven, focusses primarily on people's problems and failings, and puts the professional in control. By contrast, the supported parenting model involves working long-term to build on a family's strengths in order to promote competence and sustain independence.

The idea of supported parenting is grounded on a core of practice principles that have emerged from the experience of working with mothers and fathers who have learning difficulties and their children.

Foremost among these core principles are the following:

• Support must be based on respect for the parents and for the emotional bond between the parents and their children.

• Parents should be regarded as a resource, not as a problem.

• Parents have needs as people too.

• Support should be directed to the family as a unit rather than to individual members.

• Parents should be enabled to feel in control and to experience being competent.

• Intervention should focus on building a family's strengths rather than on attending to its weaknesses.

• Families are best supported in the context of their own extended families, neighbourhoods and communities.

• Parents must be engaged as active partners in service planning and involved as equals in choices and decisions affecting their family.

Supported Parenting in Wisconsin

These guiding principles have emerged from pioneering initiatives in supported parenting in the United States (Ullmer, 1991). The State of Wisconsin has been among the frontrunners in this field. For over ten years, the Wisconsin Council on Developmental Disabilities (WCDD) has coordinated a Supported Parenting Project with the aim of helping state and local human service and public health agencies improve the quality and effectiveness of services to families headed by parents with learning difficulties.

Thirteen counties have established interagency supported parenting coalitions for the purpose of sharing information, pooling resources, training and coordinating planning for families. Each coalition has set about the task of identifying strategies for improving service delivery in their area.

For example:

• The Fond du Lac County Coalition obtained funding to appoint a part-time case manager to coordinate interagency planning with families.

• In Kenosha County the Supported Parenting Task Force organised to provide opportunities for mutual support and the exchange of information among otherwise isolated practitioners

• The Washington County Supported Parenting Interagency Group focussed its efforts on the training of practitioners.

• In Milwaukee the Supported Parenting Coalition set about planning for system change by increasing the commitment of the community to the support of families

• The Dane County Consortium obtained funding to set up a resource pool administered by a part-time coordinator to supplement the efforts of individual agencies and to meet needs not covered by other sources.

• The Brown County Supported Parenting Task Force introduced a planning process for organising support for families based on the identification of a lead agency in each individual case.

The driving force behind these initiatives has been the recognition that many of the challenges encountered by professionals in supporting families stem less from the parents themselves than from deficiencies in the services (Kidd Webster, 1988). For service providers, improved communication can result in better coordination, increased knowledge and skills, better professional support, camaraderie, and new opportunities for resource development. For families, it can mean less confusion, fewer mixed messages, more trust, and better support.

The following vignettes provide examples of specific programmes that have been set up in Wisconsin for supporting families (Mandeville, 1992a).

The Parents and Children Together Program in Madison

Provides in-home, intensive, one-to-one, long term support to families with at least one parent who has learning difficulties. Services include information and training in daily living skills, parenting skills, child growth and development and health care. As one option, families can be matched with a volunteer parent aide who spends from two to fifteen hours a week with them and provides friendship, emotional support, social and leisure opportunities and acts as a role model for the parent(s).

Some parents also receive assistance with household tasks and daily errands. The programme offers case management and maintains close contact with other agencies in the community who are involved with the family.

The Neighbors Network in Jackson Count

Uses paid 'neighbours' to provide support to a family for twelve to fifteen hours a week. Based on a parent-to-parent model (Llewellyn, Griffin and Sacco, 1992), the neighbours are themselves all parents who can relate their own experience to families who need support. The parent(s) defines what help is needed and when.

For example, the neighbour may work for a few hours in the morning to help get the children ready for school and then return in the afternoon when they come home. In addition, neighbours assist in modelling routines and skills with families. Parents in the scheme also have a county social worker who is responsible for case management. The neighbours emphasise their role as a friend rather than as a representative of authority.

The Positive Parenting Project in Brown County

Provides in-home, individualised and intensive services to families with children between birth and three years of age where one or both parents have learning difficulties (Heighway, Kidd-Webster and Snodgrass, 1988). Services include case management, advocacy, transportation, and parent education in the areas of nutrition, home management, recreation and social activities, health and safety, physical care and parenting skills. The project uses a preventive and positive approach to build on the family's strengths and help the parents provide a home environment suited to the needs of their growing child.

The Supported Parenting Program in Rock County

Provides in-home support for parents with learning difficulties designed to improve their self-esteem and their ability to cope with the stress of parenting as well as their skills in the areas of budgeting, physical care, hygiene, nutrition, play, safety, discipline and emotional stability. Staff instruct, model and support parents in order to promote their competence and safeguard their independence.

The programme is based on the belief that parents with learning difficulties are capable of raising their own children, though they may not have received any preparation for doing so. Participation is voluntary and parents control the development of their service plan.

The Intensive Aide Program in Neenah, Wisconsin

Provides practical training for parents with special needs, including parents with learning difficulties. Two aides are assigned to each family who provide training and assistance in areas such as child management, parent-child interaction, nurturing routines, nutrition, social skills, health and safety, and accessing community resources. Families receive an average of two home visits a week. The service is not time limited and families may remain in the programme as long as needed.

These initiatives and programmes bear witness to a concerted attempt to address the needs of parents with learning difficulties and serve to highlight the lack of effort that has been put into supporting families in this country. With notable exceptions such as the Special Parenting Service in Truro (Campion, 1993; McGaw, 1993a; McGaw, 1993b) and the Elfrida Rathbone Women as Parents Group in Islington (Whittaker, 1993), the special needs of these parents have been largely ignored. Over the past ten years, a great deal of systematic knowledge and practice wisdom has been gathered in Wisconsin from which much can be learned in the UK. The next section seeks to draw out some of the key lessons.

Building new supports

In pulling together some of the characteristics of a more responsive and enabling support system we have made use of formal programme evaluations undertaken as part of the WCDD Supported Parenting Project, and our own findings and observations from a recent research visit to Wisconsin*. There is a danger in this exercise of appearing to ignore Mickelson's (1947) warning against treating mothers and fathers with learning difficulties as a different kind of parent and it is true that good practice in their case shares many of the features of good practice with other families who also come to the notice of the child welfare services. In what follows, however, we have chosen to focus on their particular needs as parents and people.

Long-term support (*this research was supported by the University of Sheffield Research Fund)

Parents with learning difficulties are likely to need support on a long-term, continuing basis throughout the parenting years. Short-term, crisis-driven services often result in frustration, burn-out and a tendency to blame the parents on the part of workers and mistrust, despair and cyclical crisis episodes for families (Mandeville, 1992b). Long-term supports foster greater mutual trust and respect, improve the ways that families use support, allow more opportunities for preventive work, and enable a more holistic approach (Hoffman et al., 1990).

Trusting relationships

A positive relationship between parent and practitioner is a crucial ingredient of effective support and a primary goal of intervention. Many parents will have had bad experiences of the services in the past. Overcoming their suspicions may be a lengthy process. Breaking down these barriers calls for a genuine appreciation of the parents as people and a readiness to get involved with the family.

Parents 'know when you don't like them and they know when you don't like their children.' (Snodgrass, 1992). The values and attitudes that practitioners hold exert a more important influence on family outcomes than their knowledge and skills (Espe-Sherwindt and Kerlin, 1990).

Maintaining involvement

The success of a support programme may depend as much on its ability to involve the parents as on the abilities of the parents themselves (Espe-Sherwindt and Crable, 1993). Keeping families interested and committed is a common problem (New York State Commission on Quality of Care for the Mentally Disabled, 1993), and one shared with most early intervention programmes (Bronfenbrenner, 1974).

Life experiences that have eroded parents' sense of competence and worth are a block to participation. Also, many parents are so overburdened by day-to-day crises that they lack the energy and personal resources to assume any more responsibilities. Two steps that have been shown by the Wisconsin Supported Parenting project to ease these difficulties are working with parents as partners in ways that bolster their self-esteem and providing practical help aimed at lightening the load on the family.

Family-centred support

The children are usually the primary focus of attention for practitioners in families headed by parents with learning difficulties (Llewellyn, 1993). The parents' own needs are often overlooked or regarded as a secondary concern. Practitioners must be prepared to adapt their priorities.

Parents may be unable to meet the needs of their children unless their own needs are first addressed (Espe-Sherwindt, 1991). These needs may stem from an upbringing in which: 'No one cuddled. No one nurtured. No one cherished. No one valued. No one praised. No one played. No one supported. No one encouraged. No one comforted. No one cared. No one loved.' (Snodgrass, 1992).

Or equally they may come from the effects of daily hardships visited by poverty, bad housing, exploitation, victimisation, stigma, powerlessness, isolation and the like. When support is organised from a family-centred perspective – from the point of view of what can be done to support the family rather than how to protect the child – it is more likely to be mutually agreed and less likely to be seen as threatening (Hoffman et al., 1990).

Intensive, in-home support

Support has been shown to be most effective where it provided the opportunity for one-to-one contact in the home. Characteristically this included: frequent home visits, a high degree of availability, flexible scheduling, and a willingness to provide 'hands-on' help with some tasks in order to allow the parents to concentrate on more pressing ones (Hoffman et al., 1990).

Flexible, individualised support

Support should be targeted on the specific needs of the family and its members. Practical help may be required with particular tasks the parents cannot manage for themselves, and problem-solving support may be necessary to help them through a crisis. The flexibility to adjust the support to accommodate the parents' views of what help they need is important.

Similarly, where training is offered, it must be matched to the learning characteristics of the parents (Heighway, 1992). For example, parents with learning difficulties do not seem to benefit from attending groups with other parents. Adults learn from other adults 'when there is respect and trust, when they can choose what they want to learn, are motivated, and are offered support in a way and at a pace that is right for them' (Sweet, 1990).

Conclusions

All too often parents with learning difficulties are set up to fail by the services they look to for help. Parents and their children frequently have different professional support networks (Cross and Marks, 1995; Viewpoint, 1995a) giving rise to problems of coordination, interagency communication and mixed or muddled messages to the families. Parents who run into difficulties are typically referred to the very professionals who have the main statutory responsibility for child protection. Practitioners with the most expertise in learning difficulties are less likely to be involved.

Child protection services are not organised to provide support over the longer term nor do they have the skills to meet the other requirements of a responsive and enabling approach towards these families. Consequently, parents with learning difficulties continue to receive rough justice and their children a raw deal.

The supported parenting model offers a way of shifting from a punitive to a positive approach to families headed by parents with learning difficulties. Making this shift calls for more than just a realignment of professional responsibilities. It demands a new way of thinking based on the rejection of the traditional deficit model of service delivery, and in particular a switch from:

• A focus on people as individuals to the family as a unit.

• A concentration on the assessment of risk and vulnerability to an equal appreciation of people's strengths and their resilience under pressure

• A concern about promoting dependence to the goal of building competence.

• The role of professional expert to the role of partner.

• Fitting people into methods to altering methods to fit people.

Until these changes in practice take place, practitioners will continue to lack what the Local Government Ombudsman described as a clear view of their aims when working with parents who have learning difficulties, and the families themselves will continue to experience the child protection system as a juggernaut before which they are merely hapless victims.