The purpose of this chapter is to provide guidance to practising midwives when working with parents who are learning disabled. During the production of this chapter, the question was asked, what about mental illness? The fact is that there are many conditions that could be included in a weightier tome. Learning disability is a condition that causes people to be marginalised and devalued, often in favour of people who are mentally ill. For this very reason this chapter attempts to address the wide gap in the literature, where meaningful work carried out with people who are learning disabled is highlighted and used to direct midwives towards available resources and good working practices. Ironically, the adoption of such strategies will help midwives to work more effectively with people with other conditions if the skills are incorporated into everyday practice.
This chapter will explore the terminology used in various services. Often the terms ‘learning disability’ and ‘mental health’ are confused; this will be clarified within the text. Following the closure of the institutions and the backlash against the eugenics movement, people with learning disabilities have started to live ordinary lives. A discussion of rights issues for people with learning disabilities is included. This discussion will examine issues such as the way services have taken control of people’s lives in the past and the lack of empowerment for people to enable them to have control over their own packages of care. Most of us take the components that make up our everyday lives for granted. These components make up the principles of choice, respect, inclusion, relationships and development; these are explored from the point of view of the person with learning disability. These principles are the fundamental issues in people’s lives and serve to illustrate how people with learning disabilities have limitations imposed on their lives. Rights issues and the European Convention of Rights for Disabled People are discussed to highlight the fact that services should encourage advocacy for people to enable them to realise their rights. The Valuing People White Paper produced by this government is the first piece of legislation specifically for and about people with learning disabilities in 30 years. Issues within this White Paper are discussed, with the emphasis being on the areas relating specifically to families and the right of the person with learning disabilities to have a relationship and start a family.
Booth and Booth from Sheffield University and McGaw from Cornwall NHS have all written extensively about people with learning disabilities and parenthood. Their work is used to discuss assessment of parents in areas of child-care and the coping strategies employed by parents. The issues affecting parents from socio-economically deprived backgrounds are discussed in relation to the parallels that can be drawn with the way people from such backgrounds cope and the similar issues for parents with learning disabilities. The conclusion to this argument is discussed; in that support networks are highlighted as being paramount in the success of parents especially those with learning disabilities. It is the strength of such networks that govern whether a person with learning disability is successful or not in their endeavours to be a parent.
Institutions housed many people with learning disabilities over the years. Out of sight and out of mind was the norm for anyone who appeared to be different in any way. It can be said that disability is a social construction, that is to say that in a non-disabled world, there is an expectation for people to function in a certain way. Any deviation from this norm becomes problematic. In our non-disabled world, services, shops, entertainment, partnerships, procreation, all aspects of life, are geared towards the social norms. In the 1980s when the UK Community Care Act decreed that institutions should close on human rights grounds, people with learning disabilities more than ever started to live ordinary lives in ordinary houses in ordinary streets (O’Brien & O’Brien 1995).
The Declaration of Human Rights was adapted in 1979 by the United Nations to a Declaration of the Rights of the Mentally Handicapped. The aim of the declaration is to ensure that disabled people have the right to ‘freedom of expression, liberty and security, respect for private life, marriage, education, and prohibition of discrimination’ (Atherton 2003, p 56.).
Along with this territory came the wishes from the people themselves to lead ordinary lives, including marriage and producing families. Relationships are an important part of the socialisation process for all of us. We take for granted the benefits of such relationships of sharing and caring during both good times and not so good times. Just to be able to have someone there to talk to about everyday things is something many of us take for granted. If we were unable to form relationships we would more than likely be very lonely and isolated and suffer from low self-esteem and even depression (Carson & Docherty 2002).
The work of David Pitonyak (2006) illustrates this very point. According to Pitonyak (2006), relationships are paramount in all our lives. Relationships enable us to have a sense of self and worth. Where we have relationships we have a personal history as social functions are centred on our own histories and the intertwined histories of those we have relationships with. Shevin (1999) talks about loneliness as being the most disabling of conditions. People who have disabilities tend to live in situations where they have to depend on others to help them to function in their everyday lives. The people who provide the help more often than not are paid to be in those people’s lives. The nature of employment is that people tend to work in one place for a while but will eventually move on. The majority of people take it for granted that there are friends and family around them that they can share their lives with. Even the simple question of ‘how was your day’ is very important to show that we are cared for and others care for us. If there is no one around to ask that question the consequences can be severe. Loneliness means that there is no one there to ask how your day was. There is no one to share in recapping memories of shared events of last week, last year or even last decade. As well as sharing, a family can provide kindness, acceptance and above all love. We all need to feel loved and that we belong somewhere. This need is the same for all people especially people who have disabilities. It is no surprise then that as opportunities to form relationships increase for people with learning disabilities so too does the desire to create a family of their own. In the institutions many people grew up in an environment where males and females were separated. This meant that inevitably some people who were more able would form secretive relationships. Often residents would talk of being ‘engaged’ in a desperate attempt to have a normal life as portrayed to them in the media and by staff, often their only link with the outside world. We have indeed moved far from this situation in terms of community care and people living in ordinary houses. Life is still very limited for many as a balance is sought between allowing people independence and an ordinary life and the desire to protect vulnerable people from exploitation.
The present government brought out a White Paper entitled Valuing People (DoH 2001b) in order to address the needs of people with learning disabilities living in the community. In it the DoH states ‘good services will help people with learning disabilities develop opportunities to form relationships, including ones of a physical and sexual nature’ Valuing PeopleDoH 2001b, p 81. This paper addresses the issues of parenthood and how people with learning disabilities need the same considerations as anyone else in a similar situation. There is also a necessity to consider the individual needs of each person, to ensure that their experience is as positive as possible for everyone involved.
A fundamental issue to begin any discussion around people with learning disabilities is around the terminology and array of terms used within services and the community in order to meet people’s needs. In an effort to clarify the situation these will be explored here.
There exists a wide range of conditions causing learning disability and a resulting wide range of abilities. Some people are so affected by their disability that self-care and verbal communication are severely impaired (Roffman 2000). At the other end of the scale is people affected in such a way that they can self-care and communicate verbally, but may have some social inadequacies within our non-disabled literature-dependent world. The current legislation refers to the term ‘learning disability’, to indicate such people and their needs (Race 2002). The education system on the other hand works to meet the needs of people from a wider span of difficulties and the term used here is learning difficulty. This term incorporates conditions such as learning disability, autism and dyslexia amongst others. The legal system uses yet another term, referring to people as ‘mentally impaired’. This term includes mental illness. The people being considered within this chapter are learning disabled. This is a condition usually present at birth or caused by some insult to the central nervous system in the formative years. This might be as a result of drug use by the mother or some trauma whilst the child was in utero. It might be the result of an instrumental birth, the use of forceps for example, or prolonged delivery and caesarean section causing anoxia. It could be as a result of the infant or toddler having trauma or disease such as meningitis. Any insult to the central nervous system during these formative years usually causes an arrested state of development which means that the person’s capacity to develop cognitively is limited. This does not mean that the person is limited in all ways, just that the ability to learn may be limited. Mental illness on the other hand can be caused at any stage of life, a pertinent example being postnatal depression. The student who is stressed with studying for final exams can become suicidal; the increase in drug use in our society is causing an increase in schizophrenia. These are all examples of mental illness. Such conditions are usually responsive to treatment, whereas learning disability is usually a permanent condition. That is not to say that a person is incapable and shouldn’t be given every chance to lead a similar quality of life as others of a similar age and social position. Learning disabilities span a wide scope of abilities. This is where the difficulty lies when the question of sexuality arises. Some people may only need to be advised about masturbation and appropriate behaviour and privacy, whilst others may need to have an understanding of more complex issues such as relationships, contraception and safe sex (Fegan et al 1993).
Power is mentioned briefly here to illustrate how awareness on the part of health professionals can serve to change the lives of people they provide a service to. Talcott Parsons is discussed extensively in Giddens (1995) as writing extensively about issues of power and the sick role adopted and given to people using the health service. The inverse care law usually applies, whereby a person who is seen as more powerful receives a better service, whereas the least powerful person, who is often most in need of services, does not always receive an adequate service. Therefore empowerment becomes a central issue when attempting to deliver a service to a person who has a learning disability. Holmes, 1999/2000 and Inclusive Technology, 2006 details work of Guttmann as alluding to the fact that prejudice can cause people with learning disabilities to feel inferior and even to have low self-esteem. Holmes, 1999/2000 and Inclusive Technology, 2006 argues that people should not be made to feel this from health professionals. Professionals therefore have a responsibility to understand the issues that may face people with disabilities and so act as a resource to promote physical care, emotional support and give advice.
The difficulty is professionals are only human and according to Miller & Sammons (1999), we have a tendency in psychological terms to form patterns in our minds that make the world predictable, comfortable and familiar. When we come across an event that does not fit our usual scheme of the world, we are likely to react. Anything that is unfamiliar or unexpected therefore, can be unsettling. Our reactions to difference then can range from admiration, inspiration or curiosity to fixation, apprehension, fear, disgust, shock and surprise and even sadness. This is often the type of reaction people experience when they come across somebody who is learning disabled. If that person decides to start a family, rather than being congratulated, questions will be asked: why? How will they manage? Will they pass the disability on to their own children? Rather than considering, how can we help? What assistance will they need? Or even, what a wonderful event (Hevey 1993).
The questions asked are usually based on our historical tendency to devalue people who are different in any way. Even the term ‘learning disability’ is the culmination of years of attempts to define a group of people who are seen as different, labelled and experience devaluation in all aspects of their lives (Boxall 2002). As a consequence, the terminology used to describe such people becomes, in turn, devalued and is used as a derogatory term in everyday language. Examples are ‘mentally handicapped’, ‘mentally subnormal’, and a whole range of terms used in official capacities over the years that have been reduced to terms of ridicule and abuse: ‘spaz’, ‘mencap’, ‘subbie’ being some of the milder terms for example. In our more enlightened times, people with learning disabilities are becoming more valued as citizens within our communities; along with this comes the overwhelming desire to lead an ordinary life, which for most people includes marriage and starting a family. With this comes the increase in numbers of people becoming pregnant (DoH 2001a). This is often the result of a relationship but unfortunately can still occasionally be the result of an abusive event. Whatever the circumstances the mother will need the same support and care as any other prospective mothers.
SERVICE-LED DECISIONS VERSUS PERSON-CENTRED CARE
In the 1980s, the term, ‘social role valorisation’ was introduced by Wolf Wolfensberger within services for people with learning disabilities (Race 2002). This term was used to define a complex issue within these services. People with learning disabilities have, up until now, been the passive recipients of services, whether the service was appropriate, therapeutic or not, or even abusive in some cases. Wolfensberger and others looked at human rights issues and saw that people with learning disabilities needed to lead ordinary lives with whatever support they needed to enable them to do so (Atherton 2003). Thompson (2005) refers to ‘the professional gift’ model of care, where professionals have the qualifications, knowledge and status, which put them in a position of power when deciding the service a person will receive. People themselves have no control or say in the service they receive. Social role valorisation saw a change in thinking, in that the services should enable a person to lead a valued life with valued social roles, which most people enjoy. These roles include simple things like being a customer, a colleague, and more complex roles like family roles, partner, and parent (Atherton 2003). There is therefore a need to redress the balance of power within services. Rather than a service providing care to passive individuals, individuals needs to have a say in the service that they want and the care they receive (O’Hara & Martin 2003).
Thompson (2005) agrees that this is no easy task since a person with learning disabilities will need guidance, especially in the situation of impending parenthood. The fact remains that a person using a service needs to have some control over the way that service is given rather than the relationship being an issue of power imbalance. This will help to ensure that people with learning disability have equity with other citizens and that the service they receive is not just a ‘professional gift’ but an equal partnership that meets the needs and choices of each individual.
At one time the life of a person with learning disability did not include any responsibility. Indeed the person’s life would not follow the usual pattern of the life cycle. Even people who were more able could be treated as though they were incapable of having any responsibility for their own lives. A person often would be hidden from view and kept indoors. The case of a woman admitted into care after being shut in the house by her mother for the majority of her life illustrates the shame attached to the birth of a child with learning disabilities in the past. It wasn’t until the then elderly mother passed away that the young woman, in her forties now, was moved from the family home in a very unkempt state into an institution where she started to mix with other people. Another woman, was kept locked in her bedroom away from her brothers and never received any schooling. Eventually she was put into an institution never to be seen by her family again. The normal patterns of schooling often did not take place and as a result people didn’t receive the socialisation of mixing and learning from peers that the rest of us take for granted. Consequently the opportunities afforded to everyone else did not happen for either of these women and thousands of others like them. They certainly had very little choice or control in their lives and no chance of forming healthy, loving, valued relationships with others. Consequently any role they did have was seen to be a burden or shameful by their families and those around them, and by today’s standards is quite shocking.
Following on from social role valorisation is the development of ordinary living principles. These are issues that most people take for granted but are often missing from the lives of people with learning disabilities. Race (2002) discusses work by O’Brien who developed five principles: choice, participation in everyday life, respect from others, development of skills to lead a fuller life, and relationships, but not just with people paid to be in the person’s life, like teachers, carers and bus drivers. Services need to be based on these five principles. The Valuing People document (DoH 2001a) reiterates these principles in making its central objective aims to promote ‘rights, independence, choice and inclusion for people with learning disabilities’ (DoH 2001a, p 106). In relation to maternity services, choice is an important issue in giving people enough information, so they can make informed choices from the start of the pregnancy and antenatal care through to the birth plan and an individual’s preferences. Participation means to be able to participate in all aspects of life and not being excluded on the grounds of having a learning disability.
Individuals with learning disabilities are often looked at from the view of what they cannot do, rather than the positive aspects of what they can do or could do with support. Booth & Booth (1999) refer to factors that are exacerbated by well-meaning professionals, one of which is the presumption of incompetence. Parents who are learning disabled often feel discriminated against as professionals mistakenly make the assumption that any limitations caused by their learning disability will automatically make them unfit parents (Booth & Booth 1999).
Development is a thing we all take for granted usually, but if we were treated as perpetual children, as often people with learning disabilities are, then life may become very frustrating. A person needs to be allowed to develop through learning new skills and being treated as an adult. Being allowed to develop real relationships remains a bone of contention but many people with learning disabilities develop lasting and enduring friendships (Brackenbridge & McKenzie 2005). Brackenbridge and McKenzie refer to the positive aspects of friendship as raising self-esteem, preventing depression and improving quality of life. Who are we then to prevent individuals from developing friendships and even relationships that include expressing sexuality? These issues are all part of ordinary living that the rest of us take for granted. The person with a learning disability can become very isolated. If siblings leave the family home to go on to develop their own families or go to college or just to make their own way in life, the person with a learning disability is often left behind. This can cause a sense of loss. Pitonyak (2006) refers to this situation where the person may lose a close friend, someone who advocated for them and who helped them in many aspects of their life. Such support is now gone and is an extension to the usual sibling relationship and therefore, according to Pitonyak (2006), the loss felt may be even greater. Pitonyak (2006) suggests that we ask ourselves, ‘if this person died today who would care?’ Whilst this may seem an extreme question to ask, the answer has serious implications. The majority of people with learning disabilities rely on people being paid to be in their lives or close family for their relationships. Even where relationships are facilitated in the person’s life, little regard is given to the sexual aspect of any relationship. Relationships are usually considered as platonic and information is often limited to stopping any kind of loving relationship. Information that is given needs to include sexuality and any issues that are useful to that individual should be included. In a world where we still have difficulty in teaching our own children about sexuality and the taboos that surround sex education, teaching people with learning disabilities about sexuality is still seen as a great risk rather than a necessity. It can be argued that if both children and people with learning difficulties are taught about sexuality when it is appropriate for them, a lot of problems related to sexuality can be eased.
ADVOCACY AND EMPOWERMENT
Since the closure of institutions, many advocacy groups have developed throughout the country. Groups such as, ‘People First’ for example (Ward 1995), are usually run by people with learning disabilities for people with learning disabilities. They have gathered momentum and are contributing to major government initiatives including the White Paper Valuing People (DoH 2001a). This said there is still a long way to go before people with learning disabilities have a say in the care they receive from everyday services. Booth & Booth (1999) discuss a project funded by the Joseph Rowntree Foundation, entitled ‘Parents Together’. The project explored aspects of support needed for parents with learning disabilities, such as advocacy. This was rather than concentrating on the child and its development or on actual parenting skills. The key areas within this project were ‘lightening the load on parents, challenging discriminatory practice and improving their self esteem’ (Booth & Booth 1999, p 472).
Arnold (2003) details a similar service in North Tyneside. The emphasis within this service is also on support for parents and offers a support group to parents as well as a personal development programme to help individuals to develop their self-esteem. The service also offers support in the form of an outreach service.
In order to empower an individual, professionals need to enable that person to have a voice. Often this can mean a great deal of patience to allow a person with learning disabilities their say. In a busy clinic this is not always easy, and guidelines have been drawn up to help services to meet the needs of people with learning disabilities. The key requirements as detailed in Valuing People (DOH 2001a) include the most important issue for the NHS to address, that of staff developing the necessary skills to consider the needs of people with learning disabilities.
Linda Ward (1995) quotes ‘People first’ as putting the emphasis on accessible information: ‘People with learning disabilities find their community inaccessible to them in many formats, but none more powerful than inaccessible information’ (Ward 1995, p 16). This meant that many documents were written for people who are literate and have a certain level of cognitive functioning. Accessible documents would include pictures or illustrations, would be written in non-jargon language and would even have large font print to enhance readability. According to Ward (1995)‘People first’ went on to develop initiatives in this area and there are now many documents in accessible format, Valuing People being an example. It is worth considering, therefore, in maternity services, the format of information given to prospective parents and considering just how accessible it is. Such a strategy may indeed help many parents and not just those who have learning disabilities.
The ‘Once a day’ document: ‘A primary care handbook for people with learning disabilities’ (DOH 1999) was produced by the government to emphasise the need for meeting the health needs of people with learning disabilities. This document details that people with learning disabilities have a reduced ability to understand new or complex information, to learn new skills and to cope independently.
There is a need, when communicating with people with learning disabilities, to ensure effectiveness of the communication and specific principles need to be considered (see Box 5.1). They were developed as a communication strategy by people with learning disabilities for people with learning disabilities from the CHANGE organisation website.
▪ Speak clearly.
▪ Use short words and not jargon.
▪ Use short sentences.
▪ Avoid giving too much information at once.
▪ Break down the information.
▪ List important things.
▪ Write it down if needed.
▪ Draw simple pictures to help make information clearer.
▪ Give the person time to think about what has been said.
▪ Check understanding.
Clearly in the case of a woman with a learning disability, there is a definite need to take her views into account during her pregnancy. This may just mean allowing time and engaging in thoughtful communication, but such measures can make all the difference to what could be a frightening and difficult time for that woman. However Booth & Booth (1999) do stipulate that whilst advocacy helps to empower people and raise self-esteem, in services that do not support families with special needs enough, advocacy is needed but the overall goal needs to be a change in attitudes and a change in the system to take into account a positive view of parents with learning disabilities.
When working with parents with learning disabilities, one of the starting points may be conception. Consenting to a sexual relationship between two adults is as normal a part of life as breathing and eating. When the two adults involved happen to have a learning disability, many issues arise.
Craft & Brown (1994) give an account of personal relationships and sexuality with people who have learning disabilities. Here they reiterate the point that in the past people have been treated under the medical model, whereby a cure or treatment for the condition has been the aim of services. Otherwise the educational model dominated; here the right kind of training could be seen to put people’s faults to rights. The onus is always on the person as having a fault to be solved rather than a person who needed to be accepted in the society they live in. It is only in recent years that as mentioned previously, the rights model has been employed. The rights of choice, development, community presence, relationships and respect (Race 2002) all link in to illustrate how, if the individual with learning disability is going to lead a full life, equal to their non-disabled peers, then services and others need to adopt this philosophy and allow people age-appropriate activities. This change does not happen overnight or indeed for all people; it is a process of social change away from the social structures and practices of the past in relation to people with learning disabilities.
ASSESSMENT OF NEEDS
According to McGaw & Sturmey (1993), a starting point in assessing the needs of parents who have learning disabilities is in identifying that a person has a learning disability in the first place. There are assessment tools available that are commonly used by clinical psychologists, to identify people with learning disabilities. Given the time constraints of a pregnancy, midwives need to be able to identify if a person has a learning disability in order to ensure that individual needs are met. McGaw & Sturmey (1993) argue that the identification of complex issues such as Intelligence Quotient or I.Q. is problematic. People may be functioning within the community with an I.Q. of 50 to 70 but may not be using services, whereas another person with an I.Q. between 70 and 85 may be receiving services. Services need to be provided on a needs basis rather than a labelling scheme such as I.Q.
Baum (1994) discusses the case of a young woman who had an I.Q. of below 40 and had become pregnant. It was found that by law a person with an I.Q. below 54 is deemed to be incapable of giving consent to sexual intercourse. In this case then, a criminal act had been committed; this is another aspect of learning disabilities that needs careful consideration.
Tymchuk & Andron (1994) discuss the fact that I.Q. is not a reliable indicator of a person’s ability to parent. Inevitably people that often come to the notice of services are those who are in need of the services. Others who are coping well and do not use services do not tend to be detailed in the literature, simply because they are absent from the available picture (Tymchuk & Andron 1994). A person who has learning disabilities and does not usually use any services will not always therefore be identified when they do need extra services to meet their needs during a life event such as pregnancy.
If prospective parents are already known to learning disability services, then identification of the individual and their needs will be easier (Booth & Booth 1996). Schooling may be an indication of the prevalence of learning disability. If a person attended a special school or had special tuition, a classroom assistant for example, this may indicate that a person has a learning difficulty.
The fact remains that identifying a person is problematic in that the person becomes labelled and the expectations and inequalities associated with that label are usually, unwittingly, instigated on the part of care providers, in this case midwives. If a person is labelled in such a way, the reactions as mentioned earlier, of shock, disbelief, revulsion etc., may be felt. A certain level of self-awareness is needed therefore on the part of midwife practitioners. The need for unconditional positive regard is paramount. That is to say, that midwives need to develop an awareness of their own attitudes in order to develop strategies to deal with feelings about prospective mothers or parents who have special needs (Booth & Booth 1996). This is in order that such feelings do not colour any clinical decisions taken and that the skills of advocacy and non-judgementality can be exercised in the practise of meeting the person’s human rights (Blackford et al 2000).