When you mention that you are working with parents who have an intellectual disability, the responses can be diverse and sometimes controversial. Some people immediately refer to the children with pity, others talk of the amount of support such parents would need and some say that it is just not right and shouldn’t be allowed! But who are these people referring to exactly? The diagnosis of intellectual disability is as broad as it is long and it is clear that people are using their own personal experiences to equip them with judgment. Yet this diverse group have a range of strengths and weaknesses (like everyone else) when it comes to parental capacity.
In the literature, this group are often referred to as an ‘invisible population’ as they can be difficult to recognise and thus it is hard to quantify their number. In Ireland their profile needs to be raised so that as they gain visibility, so do their needs. This would be in stark contrast to when, as children, the less able were purposefully hidden from view as they were routinely sent away into institutional care. We are moving forward from this legacy of the past into a future where we value people and difference.
The aim of this article is to introduce this area and to begin to describe some of the issues that this group of people face.
We need to consider how they can be supported so that they can partake in one of the most ‘ordinary’ and accepted life choices that we have as human beings—the option to have and to raise our own children.
Who are these parents?
The profile of parents with an intellectual disability is described in literature from the UK. It is stated that they are more likely to live in poverty and to have inadequate housing. If they have work opportunities, they are more likely to be in lower paid jobs. Many of these people will have been brought up in care and therefore will have little experience of family life. They may be more likely to experience mental or physical health problems and to be socially isolated.
Studies have indicated that, typically, it is women who are in the mild to borderline range of disability who become pregnant. Those who have more moderate to profound intellectual disability are less likely to become pregnant since they are less likely to establish sexual relationships. A study from 1993 by Turk and Brown indicated that they are more at risk of sexual abuse, but that this does not commonly result in pregnancy.
This descriptive information gives an impression of this group and the accompanying factors that are also relevant. It would be very informative to describe the characteristics of this group in Ireland in order to more confidently predict their needs. This is particularly important as Gath (1988) found that the accompanying social factors are the main barrier to achieving the standard of ‘good-enough parenting’ as defined by Winnicott. Indeed, the intelligence quotient (IQ) is not necessarily predictive of inadequate parenting, as Tymchuk et al. (1987) revealed, when they showed that only when IQ falls below 55-60 is it a critical factor.
What are the issues?
The parents who are seen in services may have had their first contact due to the needs of their child, rather than because of their own needs. For example, McGaw and Sturmey (1993) found that the speech and language development of children may be particularly susceptible to delay when mothers have an intellectual disability. This, in turn, means that families may present to services via the need for speech therapy. Alternatively, families may first present to public health nurses and social workers in child protection as a result of the social problems that can be associated with intellectual disability, as outlined above.
The types of referrals within the health service could include concerns about a child’s diet and health, concerns with regard to a specific incident or accident, or delays in getting and seeking help for children. Owing to a lack of skills in the cognitive and adaptive behaviour profile of the parent/s, there may be a difficulty with the practical interpretation of the child’s needs; for example, the need for a varied healthy diet or the need to budget carefully to allow for enough money for the week. A person with intellectual disability might easily be able to provide love, respect and affection for their child, but because of their difficulty in generalising their learning, they may be less aware of possible risks to child safety.
They may find it a challenge to set limits and to understand how to discipline their child. Such problems may be magnified, depending on the characteristics and the number of children involved.
In addition to this, there is evidence that the children of parents with intellectual disability are more likely to be brighter than their parents. This means, of course, that they will surpass their parents in terms of ability—which brings with it additional systemic adjustments to the role of parent as the children mature into adulthood.
What do these parents and their children need?
From my own clinical work, I believe that in the first instance parents and children need a clear and fair assessment of their needs. It is important that during the assessment process, professionals are sensitive to the strain parents are under. We need to be mindful of the multitude of professionals involved with the family from social workers, solicitors, psychologists and judges. We need to be aware of the strain of these multi-agency inputs and the fact that the process of assessment can be long and stressful for the family members who are under the spotlight of scrutiny.
As well as being aware of the effect on the families of our ‘en masse’ involvement, we need to challenge what Whitman and Accardo (1990) refer to as the ‘unhelpful presumption.’ This is the belief that neglect and abuse of children are inevitable when a parent has intellectual disability.
Assessors need to attempt to establish the needs of the parents and to match them with appropriate service provision. Studies focusing on competencies have found that parents with intellectual disability can successfully raise their children, when they are given the support that matches their needs (Feldman et al. 1986; Hertz 1979; Feldman 1994). The understanding at commencement of assessment (i.e. the default, in my opinion) should be that the parent and child should be together, unless and until it is determined by evidence that the risks to the child are too great and that they cannot be provided for by family supports or formal services. If assessments are not done in this way, it can be too easy to find long lists of problems and risks with regards to an individual’s parenting.
Along with this openness and introspection with regards to services, there is the increasingly useful and supportive role of the advocate. These are professionals who are trained to work with this group, to explain to them the process they are going through and to ask questions on their behalf. The use of advocates appears to be increasing in Ireland as services develop. It should, however, be an option for all parents with intellectual disability who are going through the family law courts system.
To bring out the best in these families, we also need to develop support and training services—from sheltered housing to family support services and other individual forms of shared care. Parents can also benefit from training and modelling which is designed for their level of ability, which is practical, and which improves the parents’ feelings of competence and self-worth in their role. We need to keep moving towards a model of engagement that we can be proud of, which keeps families together and protects children.