Despite evidence to the contrary (Booth & Booth, 1998), the popular view persists that people with learning disabilities do no make good parents. As a result, parents with learning disabilities face high levels of professional surveillance, driven by the assumption that if you have a learning disability you simply cannot be a good mother or father.

Parents with learning disabilities still feel that systems and services are set up for them fail, rather than to be supported (Hunt, 2011).

The result is that people with learning disabilities are fifty times more likely than other parents to be involved in care proceedings (Hunt, 2011).

Around 7% of people with learning disabilities are parents (Mencap, 2011).

If a person has been labelled with a learning disability, this is not, in itself, a reliable predictor for parenting capacity (Feldman, 1994). However, the social contexts in which people with learning disabilities live do impact on parenting ability; stress, social support, financial status, access to services and health inequality all affect parenting capacity (Mencap, 2011).

People with learning disabilities often experience barriers to effective health care and support, not least because of a lack of training and understanding on the part of those professionals working with them (Mencap, 2011).

The Study

The focus here is on a small-scale study that explored advocacy interventions provided by third sector organisations to support parents with learning disabilities. The organisations were supporting people whose parenting ability was under scrutiny and who were at risk of having their children taken away from them.

The aim of the study was to explore whether there is an economic case for investing in advocacy to support parents with learning disabilities in order to reduce public spending elsewhere and to achieve wider economic benefits.

Methods

The researchers carried out a review of the economic literature on the cost benefits of advocacy.

The researchers held ten workshops with invited participants who were deemed to be experts in advocacy with an interest in economic analysis, some of whom had previously been involved in economic research.

In addition to the workshops, seven surveys were carried out, between July and August, 2012, with advocacy projects who were involved in frontline delivery of support to parents with learning disabilities for at least part of their advocacy services.

The researchers employed an economic modeling method in order to calculate the cost benefits of advocacy intervention.

Findings

The study found that early intervention by advocacy services, certainly no later than the initiation of inquiries under Section 47 of the Children Act 1989, were crucial to the success of supporting families. (Section 47 places a duty on LAs to investigate and make inquiries into the circumstances of children considered to be at risk of ‘significant harm’ and, where these inquiries indicate the need, to decide what action, if any, it may need to take to safeguard and promote the child’s welfare.)

Several respondents reported that, when advocates became involved later in the process, the focus of their advocacy became more about helping parents to accept decisions to remove children from their care, with the aim or reducing their distress, rather than influencing the outcomes of care proceedings.

Where parents had become disengaged from safeguarding processes, advocacy was particularly effective. It is worth noting that this reveals as much about the information and support available to parents as it does about the perceived capacities of parents with learning disability.

Parents with learning disabilities consistently report being denied access to information and support that would allow them to better understand what was required of them as parents, as well as during care proceedings (Mencap, 2011).

On the one hand, advocacy was reported to be particularly effective in reassuring parents and so enabling their engagement with professionals. On the other hand, advocacy also facilitated a change in professional attitudes as they became more aware of the barriers the parents faced. The involvement of an advocate led to better partnership working with the family and opened up opportunities for discussion about a greater range of options for moving forward. Advocates were also able to support parents with existing problems including housing and debt.

Crucially, advocacy also positively impacted on children’s lives with reports of school attendance and achievement rising following support.

Conclusions

The paper concludes that investment in advocacy for parents with learning disabilities offsets the costs in the short (or medium) term and so achieves positive returns from the public sector perspective, and, when quality of life and employment effects were factored in the economic benefits were even greater.

Strengths and limitations

The researchers themselves outline some of the limitations of the study. There is possible participant bias as the workers in self-advocacy organisations may have had an interest in demonstrating cost effectiveness. In addition, the authors also point out that they did not base the outcomes “on measures taken independently from people using advocacy services”, they suggest that this is because this would have “required a much more complex and expensive study than was feasible” (Bauer et al., 2014: 72).

The application of a costs benefits analysis to the impact of advocacy in the lives of parents with learning disabilities is to be welcomed. Cost benefit analyses are always vulnerable to the charge that the assumptions in formulating the calculations are inaccurate, however, the authors state that they have tried to be conservative in their estimates and accept that their claims are tentative.

In the context of austerity, such research provides policy makers and service providers with powerful information upon which to inform their decision-making. However, the inclusion of the views of people with learning disabilities in the development of the measures would have clearly strengthened the research.

People with learning disabilities are often denied the opportunity to speak about their lives and their exclusion from research, even when this is seen complex and expensive, is problematic. It was not clear whether any of the advocacy organisations involved in the research were user-led and what the impact of peer advocacy for parents with learning disabilities might be. This would be a useful area for future research.

Advocacy organisations for people with learning disabilities are experiencing devastating cuts to their funding (Pring, 2011; Goodley and Runswick-Cole, 2015). Access to support is diminishing as the commissioning of generic advocacy services are pushing out small user-led self-advocacy organisations. This report should play a part in challenging the cuts to the provision of advocacy services for people with learning disabilities.

Back in the nineties, Booth & Booth (1998) found that social factors presented the biggest barriers to parents with learning disabilities parenting ‘well’ rather than the presence of the label of ‘learning disability’, sadly, this study suggests that there is still much work to be done to shift attitudes to parents with learning disabilities.

Link

Bauer, A., Wistow, G., Dixson, J. and Knapp, M. (2014) Investing in advocacy for parents with learning disabilities: what is the economic argument? British Journal of Learning Disabilities, 43, 66–74 [abstract]

References

Booth, T. & Booth, W. (1998) Growing Up with Parents Who Have Learning Difficulties, London: Routledge.

Feldman M A (1994). Parenting education for parents with intellectual disability: a review of the literature. Research in Developmental Disabilities 15: 229-32

Goodley, D. and Runswick-Cole, K. 2015) Briefing Card 6: Self-advocacy in the lives of people with learning disabilities. Accessed on 9th February, 2015.

Hunt, L. (2011) Supporting learning disabled parents to keep their children, Community Care. Accessed on 6th February, 2015

Mencap (2011) Inclusive Support for Parents with Learning Disabilities. Accessed on 9th February, 2015

Pring, J. (2011) Funding cuts put future of self-advocacy movement in doubt, Disability News Service, March, 2011