Registered Nurse in Intellectual Disabilites as a member of an early intervention team

by Ber Ryan


This article examines the role of the RNID in the provision of person-centred care in the area of early intervention. Relevant literature has been sourced and examined. As the area of early intervention is so vast, the author has chosen to concentrate on supports to families following diagnosis. Throughout the literature, it is evident that person-centred care is paramount to achieving independence. The author will critically look at her role within this process in relation to the child and the family.

The nucleus family is essential in a child’s life, whether it consists of single parents or both parents. Carpenter (2000) has proposed a model which places the child at the centre, and how immediate family, extended family and the wider community has at varying times an impact on the child’s quality of life. When we consider a child-centred care approach, it stands to reason that in order to do so effectively the child’s family is key to this care. Professionals working with a child must embrace the child with the diverse family package, and acknowledge the pivotal role they play in the provision of care, teaching/acquiring new skills and promoting independence, thus ensuring a greater quality of life.

Working in partnership with families, by open sharing and transferring of skills in a trans-disciplinary way, acknowledges this concept and ensures a more effective service for the child (Carpenter 2000). Therefore, by ensuring a family-centred approach is taken, the child remains central in the process. Each family has a unique knowledge of their child, what their child’s strengths are and how best to integrate these strengths into daily living (Wolfendale 2000).

As outlined by An Bord Altranais (2000), nurses have a professional, ethical and legal responsibility to provide care that is individualised and appropriate to each person in order to ensure their interests and wellness, irrespective of age and ability of the person requiring services. According to Matousova-Done and Gates (2005), the most important aspect of an intellectual disability nurse’s role is to support people with an intellectual disability in achieving goals and desires in activities of daily living to aspire to independence to the best of their ability and fullest potential.

The philosophy undercurrent in Valuing People (2001) is that people with an intellectual disability and their families require that professionals and organisations providing services work from the key principles of rights, independence, choice and inclusion. Their approach should be a person-centred approach. According to Guralnick (2005), early intervention is an ever-increasing key factor in the intellectual disability sector and thorough, planned interventions based on experience will change developmental paths and offset secondary problems from surfacing. The concept of early intervention arose from the need to provide specific, targeted programmes to support children with intellectual disability in the crucial first years of life (Wolery and Bailey 2002).

Soriano’s (2005) definition of early intervention encompasses the rights of the child and their families to receive the necessary supports they require. Providing such supports empowers the child, the family and the professionals involved towards inclusion. In her analysis of early intervention services in the UK, Wolfendale (2000) reports the following main themes:

  • Parents must have the necessary services to enable them to support their child’s development in all areas.
  • Working towards the development of children across key domains (cognitive, self-help, language, motor, social) creates opportunities to increase the child’s independence, rights and coping mechanisms. This may be achieved through access to early years programmes and natural learning environments.
  • Prevention.

The birth of a child into a family gives rise to great joy and celebration. However, following a child’s diagnosis of disability, many emotions surface including denial, fear, uncertainty and anger—before moving towards a more balanced state of acceptance and different aspirations, dreams and ways of life (Carpenter 2005). To enable families to move forward and engage in any early intervention service requires the support of high levels of skills and competencies from skilled professionals to listen, support and acknowledge fears and anxieties. In the author’s experience, the clinical nurse specialist (CNS) is involved from the initial referral process and is therefore in the ideal position to provide this necessary emotional supportive role for the family from the onset.

As outlined by the Commission of Nursing (1998), the RNID requires personal qualities and a skill mix that are distinct from other nursing professions. Further to this, the CNS requires a higher level of insight and perceptual skills, which may be acquired through experience and education (NCPDNM 2007), The CNS is in the ideal position to provide direct specialist care to clients and their families and to proactively respond to changing dynamics in a holistic way (NCPDNM, 2002). The purpose of the study by Pelchat and Lefevbre (2004), using the PRIFAM programme, was to assess the effects of intervention programmes on the adaptation of 74 parents of children with Down Syndrome or cleft palate. Results from the study proved the effectiveness of the intervention with individuals and families experiencing less stress and more emotional competence. They were more autonomous and in a better position to carry out their parental responsibilities.

The PRIFAM programme is based on a partnership between family and professionals. The nurse supports families in the adaptation process to the child’s disability in the early years. This is done by identifying their own key internal resources, the utilisation of them and identifying external resources available. This partnership is based on trust, which is slowly built up from the initial meeting with the family in the hospital to subsequent visits in the home. There is a sharing of knowledge and skills which leads to the development of new competencies and self-determination.

There is much cited in the literature about the role of a key worker, who plays a vital role in supporting a family and coordinating service provision. The DFES/DH (2003) states that each family with a child with multiple needs should either have access to a key worker or to a leading professional working with the child. Even though this may be good practice, it is not always the case because of organisational structures or financial constraints (Limbrick 2005). The TAC (Team Around the Child) approach, which is widely used in the UK, underpins good practice and recommendations laid down in Together from the Start (2003) and the National Service Framework for Children (2004). It is defined by Limbrick (2004), as individualistic and should consist of families and professionals working together. The professionals should see the child on a regular basis in order to provide practical support to the family in all areas of the child’s development. In effect, this is a collaborative team approach with key components that include recognition of the family as part of the team, development of a key worker and multi-agency aspects. For families, having a key worker means a ‘one-stop shop’ for obtaining information, necessary supports and co-ordination of professional involvement. Through this process, families have fewer unmet needs (Ford 2005). Carpenter (2005: 181) argues that the concept of key workers has leaped into ‘requirement status’, which requires in-depth time and attention from professionals. He questions whether professional manpower is available to meet this requirement and questions whether professionals have the necessary educational skills.

The Clinical Nurse Specialist has undertaken formal recognised post-registration education in his/her specialist practice. This formal education is supported by extensive experience and clinical expertise in the specialist area (NCPDNM 2007). Although the CNS has the education and expertise necessary, in the author’s experience extensive caseloads dilute a service available to a child and its family. This certainly does impinge on one’s ability to respond as immediately as is deemed necessary to start the support service and create the path forward towards independence. In the author’s experience as CNS in early intervention, she is seen as a key worker involved with families once the psychologist has made a diagnosis and/or the child is deemed eligible for the early intervention service by the social worker.

The child is at the centre of a family unit and a wider extended family/community context, and the CNS’s responsibilities lie in forming an initial and trusting relationship with the family by providing that crucial listening ear to support parents in their quest for equilibrium in their lives (Carpenter 2005). The CNS also enables families to engage in programmes that have been designed by multiple therapists (i.e. psychology, occupational therapy and speech and language therapy). Even though these programmes cause major stress for families, they are necessary to teach children the skills required to promote independence and enable children to actively partake in routines at home and in the community. Along with having to carry out normal household chores, possibly going to work and tending to the needs of siblings, families are now expected to work through a programme of goals through the setting of specific tasks (Paige-Smith and Rix 2006).

Paige-Smith and Rix (2006) carried out a study of the experiences of three families in England on their perspectives of early intervention services and their child’s experiences. Families reported that consultation with them and consideration of their lives are necessary and need to be thought through when designing goal-focussed programmes. The author has found that breaking down all the professional programmes is quite beneficial. In collaboration with parents, working through a holistic approach based on play and active learning opportunities within the natural home setting is crucial. Amidst their often-chaotic everyday lives, adopting this approach has ensured that the needs of the child are met. In addition, some of the guilt factors associated with not doing what the professional has deemed appropriate are alleviated (Paige-Smith and Rix 2006).

In the author’s experience, achievement of continence is a major milestone in terms of independence and self-esteem in any young child with intellectual disabilities. Parents are both desperate and grateful for initial support as to where to begin and ongoing support/information in implementation of a toileting programme (Klimach and Williams-Jones 2006). From searching some of the main health databases (i.e. cinhal and medline), not many articles were found which relate to toilet training in children with intellectual disability. Certainly, Rogers (2002) and Klimach and Williams-Jones (2006) concur with this in their articles. Rogers (2002) claims that in her own experiences as a paediatric continence advisor, there was a common belief that children’s incontinence was a direct result of the child’s learning disability, and consequently, toileting programmes were not implemented at the typical age. Instead, parents waited until the child matured a little more as they thought this might make teaching new skills somewhat easier.

Unfortunately, Rogers (2002) found that by the time toileting programmes were started, some children had developed challenging behaviours which caused difficulties in carrying out toileting intervention programmes. The author can agree with this, as from her own experiences, older children had developed an attachment to the security of continence-wear. As a result, wearing them became imbedded into the child’s routine. Klimach and Williams-Jones (2006) carried out a study of 118 children attending special schools in Convy and Denbighshire. Unfortunately, children attending mainstream schools were not included in this study. They found that daytime urinary continence was achieved in 39.9% in the under-five age group, 32.8% in the six-ten age group, 1.6% in the fifteen and over age group, and 19.6% were not stated. The children in the study were diagnosed with autism, learning disability, physical disability and/or additional conditions such as epilepsy or visual/hearing impairment. For those children who did not achieve continence, parents were given advice regarding intensive toileting programmes. They concluded their study by stressing that continence is achievable with early and thorough toilet training guidelines.

Harris (2004) concurs with this and states that a holistic approach to assessment and interventions requires that a child’s functional ability be taken into account, whether a physical disability is present and whether these have any impact on the child’s continence difficulties. In a holistic approach, assessment and follow-on interventions should be undertaken by a clinician with expert knowledge and clinical judgement and supported by the child’s and family’s viewpoints. Underpinning the role of the clinical nurse specialist as directed by the NCPDNM (2007), he/she must have an expert knowledge base in an area of specialism, act as an advocate for clients and their families to participate in decisions about their health needs, and carry out assessment plans and implement treatments/interventions in such a way as to ensure person-centred outcomes.

Some of the literature that was sourced by the author claims that a child with an intellectual disability is entitled to the same interventions regarding the promotion of continence, which should include intensive assessment prior to any intervention programme being put in place (Royal College of Nursing 2006; Klimach and Williams-Jones 2006). However, in reality the majority of the assessments/checklists designed for this purpose were in fact used as an instrument to determine entitlements to free incontinence wear (Rogers 2002). In the author’s experience, which is supported by Rogers (2002), the most effective approach to toilet training is through:

  • Using baseline assessment forms to check daily toileting patterns.
  • Using portage assessment to determine whether necessary associated pre-existing skills such as motor (able to get on/off the toilet, sit unsupported), attention (can remain sitting, follow a sequence of actions), and language (understanding instruction) are in place (White and Cameron 1987).
  • Securing medical review by GP/paediatrician
  • Checking fluid intake/dietary pattern to establish healthy bowel and bladder patterns.
  • Identifying areas of potential difficulties such as sensory and behavioural.
  • Assessing the child and family’s readiness for the programme.

This assessment process takes place in consultation with the family in their home over the necessary period. Following the individualised assessment, a programme is put in place taking into account each child and family’s requirements. To support the individualised programmes, some of the following may be included:

  • Social stories (Broek et al. 1994)
  • PECS (Frost and Bondy 2002)
  • Lámh signs (Lámh Development Office 2004).

When a holistic approach is taken and appropriate time is given with the assessment process, it ensures the child can avail of many life opportunities (Matousova-Done and Gates 2006).

Article 29 of the UN Convention on the Rights of a Child states that ‘the education of the child shall be directed to: (1a) the development of the child’s personality, talents and mental and physical abilities to their fullest potential’ (Office of the High Commissioner for Human Rights 1990). The Irish government White Paper on early childhood education, Ready to Learn, endorses this philosophy by accepting that the early years of a child’s development plays a major role in a lifelong involvement in learning. Learning involves all areas of a child’s development including social, emotional, language and health in formal (pre-school settings) and informal settings (natural environments including home). This will in turn facilitate integration into the more formal circle of education (i.e. mainstream/special schools).

In the author’s experience, individual programme planning and individual educational planning as set down by EPSEN (2004) have traditionally been used to formulate a documented plan for children with intellectual disability. Unfortunately, in the majority of situations these plans were no more than a paper exercise to fulfil organisational and now governmental policy (Radcliffe and Hegarty 2001). A multidisciplinary approach was not taken, with the family as an equal member of this team. Plans were often not completed correctly, such as not having a date of birth or information being entered incorrectly and no review dates being documented. In their paper, Adams et all. (2006) examine the extent individualised planning, and whether it improved the quality of life for thirty-six people with intellectual disabilities in residential care settings. They found that having an individual plan did not necessarily lead to better outcomes or engagement in purposeful activity for the individuals. Lack of accountability and poor training in the process were cited as possible reasons for poor outcomes.

Mansell and Beadle-Brown (2004) support the concept that there are training requirements in how to provide support to people with intellectual disability and these training requirements are equally as important in training needs surrounding the individual planning process.

Some of the core principles emerging from the Disability Act (2005) include:

  • A child is a child first and not described in terms of their disability.
  • Each child is entitled to an agreed statement of needs.
  • An individual family support plan (IFSP) is to be put in place for all children in partnership with families. Damiani (1996) conducted a study, entitled Project Mandala, of 87 families from diverse multicultural groups, in order to identify whether implementation of an individual family support plan addressed goals for the child and the family.

Important issues and particular goals for families were addressed during the process. For individual children, counselling support services (i.e. separation, divorce issues) were recommended and acquired. Some barriers to implementation and success of the IFSP were noted by Damiani (1996) and included:

  • Some family’s trepidation at exposing their personal lives for professionals to scrutinise.
  • The long distances families had to travel (i.e. some families had to travel more than 11/2 hours to the college). This in turn made communication/planning of meetings more difficult.

It was reported that by the end of the seven-month development stage of the plans, ten families still had no plans in place. This author has experienced similar difficulties with the IPP/IEP process. The catchment area for the organisation involves a predominately-rural area with some families having no access to transport, and in many cases both parents working outside the home. This in turn meant problems with scheduling meetings that took both staffs’ and families’ needs into account. Financial implications for the organisation were always forefront, if, for example, taxis were required for families to attend meetings. There were monetary implications for staff working overtime if meetings were scheduled after normal working hours.

Where sensitive and confidential issues were discussed, the RNID has a professional accountability laid down by An Bord Altranais (2000) to ensure such information is treated with respect and in confidence. The CNS in partnership with families has built up a trust/respect. Therefore, families will feel more at ease and in control to make autonomous decisions at these meetings.

The HSE south is currently rolling out a model of care underpinned by the philosophy of the Disability Act (2005) and the EPSEN Act (2004). This model of care comprises individual assessments, where a statement of need is drawn up and facilitated through the development of an IFSP. This whole process works within a person-centred framework, based on holistic principles. It encompasses a child’s whole life which is needs-led and strengths-based (National Federation of Voluntary Bodies 2006). The author is currently working as part of a multidisciplinary team working through this process and will soon undergo further training to facilitate and make the process viable for families and their children.

It is apparent from the literature that the CNS has a key role in the provision of person-centred care in the early years after a child is diagnosed. With the child in the centre of any family model, his/her role is vital in supporting the family to regain their equilibrium, thus empowering them to actively engage in their parental roles. However, the CNS is aware that this is just the beginning of that role, as both the child and family require continuous support in order to achieve independence to the best of their potential.


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