Limbrick’s Primary Interventionist Model for supporting families of babies and infants who have disabilities and special needs – a natural approach sensitive to children and families

Baby Megan was born into a loving family with two parents (both of whom say they had been slow learners at school) and a caring but exhausted maternal grandmother. Baby M’s diagnosis included developmental delay with probable cerebral palsy and intellectual disability. This very anxious mother had low self-esteem and feared she would not be able to look after her daughter properly nor help her learn all the important baby things. An early Team Around the Child (TAC) decision was to offer a primary interventionist to support Baby M’s mother in getting to know her baby, becoming confident in baby care tasks and play activity. Family and interventionists agreed the mother would do best with just one familiar and trusted interventionist for the time being.

An essay by Peter Limbrick (2018)

In many early childhood intervention services that cater for babies and infants who have multiple diagnoses of disabilities that require ongoing support for development and learning, there is a common dual phenomenon: some parents feel they have too many interventionists and many interventionists feel they have too many children on their books. This overloading of children, parents and interventionists is a direct result of an additive approach in which a separate interventionist is provided for each of the child’s diagnoses. The disadvantages include expecting the child to accept a host of non-family adults, adding to parents’ stress and exhaustion, giving a poor quality of life to child and family with threats to attachment, and making inefficient use of interventionists’ time and energy.

The suggested solution in this article is a primary interventionist working within the TAC approach with interventions for development and learning residing in the child’s natural activities. Primary interventionists support parents with these activities in their own home reinforcing their role in bringing up their child in the most natural way possible while maintaining a quality of life for the infant and family.

The approach I am suggesting closely mirrors how children of all ability levels achieve their first learning at home with parents and other family members caring for them and guiding them through the daily sequence of meal times, managing clothes, playing, socialising, bath time, bedtime and getting up in the morning.

When a child’s TAC opts to work through a primary interventionist, it is moving towards a transdisciplinary model of early childhood intervention that is more child and family-centred and oriented more educationally than medically.

There is a common professional attitude that parents of infants with a disability must expect their life to be hard with exhaustion and stress as they attend multiple clinics, treatment centres, assessments and reviews. Within this attitude, family breakdown is never thought surprising. Babies and infants can suffer unnatural childhoods with patterns of intervention and interference we would never impose on other young children. Parents can be kept so busy that they have no time to relax with their baby or infant – enjoying time to just ‘be’ with them, getting to know them properly and making loving bonds.

During many decades of work, I have heard parents assert that they get more stress and strain from patterns of service delivery than they do from their child’s condition. I wonder to what extent this leads to later mental ill health for children and parents.

The incidence of babies and infants with multiple/complex needs is increasing. Though this puts service providers under pressure, rarely do they stop to re-assess their multiple-interventionist approach. While I see some agencies moving away from the traditional fragmented and disorganised patterns of early childhood intervention, I see so many that are stuck in outdated medical approaches and deaf to parents’ appeals for less disruptive support. I believe the majority of families in my country are offered fragmented and disorganised interventions. While intending to be helpful, this can create obstacles to the child’s learning, detract from child and parents’ quality of life, impede parents’ adaptation to their new situation and slow their progress towards a new version of normal family life.

A natural approach to early childhood intervention

New words can help us move away from old thinking. When I am considering an infant’s development and learning, I no longer use phrases that refer to multiple disabilities and instead describe each child as having a single unique multifaceted condition. This then leads logically to planning for each child a coherent unique multifaceted intervention system.

I suggest that, in terms of development and learning, no child can have multiple separate disabilities. We can take, for example, an infant with a dual diagnosis of cerebral palsy and vision impairment. In their development and learning each of these conditions will impact on the other. Limited vision will impact on hand skills and difficulties in posture and movement will impact on the development of vision. From the beginning, the two conditions are in interaction and a new condition emerges with characteristics neither of the separate conditions have when they exist singly. This conforms to systems theory – the whole is greater than the sum of the parts. An infant with autism and hearing loss is another example. They must develop skills in verbal communication in the context of the features of autism. While learning to relate and communicate with others, they must contend with hearing loss. The two conditions impact on each other.

This concept of a multifaceted condition, with two or more disabilities interacting with each other, can support parents and early childhood interventionists as they plan whole-child approaches to development and learning. It belongs to the educational component of early childhood intervention rather than the medical. I assume it is not such a useful concept for physicians and surgeons.

Developing a multifaceted mindset in the design of intervention systems for each child means looking afresh at early childhood intervention activities and then moving from discipline-specific targets towards the natural activity of babies and infants. A baby at the breast or an infant playing on the floor with a ball show us there are no separate functions. The baby is likely to be looking at the mother, listening to her voice, sensing with lips and hands, tasting milk, managing swallowing and breathing, being aware of being held… The infant on the floor is managing posture, balance and movement, reaching with arms and hands, looking at the ball, relating self and ball in a given space, perhaps attending to a parent or sibling’s encouragement, perhaps formulating a plan for what to do with ball once it is reached. There will surely be elements of motivation, memory, intention and satisfaction (or frustration). The natural activity of very young children is multifaceted.

As we re-evaluate traditional discipline-specific interventions for wrongly-conceived separate areas of child development, we can learn from how babies and infants all around the world achieve their first learning – the first stages of their education. This is in the multifaceted activities that follow each other through the day from getting up to going to bed. The baby at the breast is learning about relating to mother, about perception and pleasant sensations, about exploring with fingers and hands and about feeling secure. The infant on the floor is learning about space, textures, movement, relationship and fun. The key elements of this natural first education for typically-developing children include the child being at home or in other familiar places, being cared for by parents and other family members and developing and learning in the course of the natural activities of each day. Children are treated as whole children in a safe and familiar place where they are respected and valued. Activities have direct significance and relevance, are multifaceted and lead to understanding and skills increasing gradually at the child’s pace.

Natural learning in the TAC approach

Each child’s TAC is a small child- and family-friendly team of the two or three interventionists who enjoy the most regular and practical involvement with the child. Members can be drawn from occupational therapy, speech pathology, physiotherapy, psychology, early years teachers, teachers of children with hearing and/or visual impairment, etc. TAC meetings are face-to-face, probably in the family home and held as often as necessary, e.g. every month or every two or three months. Their tone is informal, warm, sensitive, supportive and positive with a flat power structure in which people work in horizontal relationship. Parents have a full place as respected and valued TAC members – parent involvement and empowerment in this way is a defining feature of the TAC approach. Membership of a TAC means not having to meet any challenge alone. It is a mutual support system with rich opportunities to reflect on practice.

Each TAC’s primary aim is to support parents in their role of bringing up their child and to respond to their requests for help. Parents might want their child to learn some first undressing skills, to drink from a cup or to play more actively on the floor. Parents will be highly motivated to follow constructive suggestions since they have highlighted the need. These three examples of natural learning are multifaceted whole-child activities involving understanding and skills in dexterity, posture, movement, communication, cognition, vision, hearing and more.

When a TAC decides the most appropriate way forward is with a primary interventionist, the chosen TAC member observes parent and child in the undressing, drinking or floor play activity as it happens now. This is filmed and taken back to the other TAC interventionists for agreement on a whole-child approach to support the parents. The primary interventionist is then fully briefed to help parent and child at home in this chosen multifaceted activity. TAC intervention on just one activity might be enough for the time being or the child and family might have capacity for two or three at the same time.

This focus on natural daily activities offers the child repeated opportunities to learn and practice basic skills in movement, communication, communication, etc. Nothing is left out. This natural approach has the following characteristics:

Parents are acknowledged and supported in their parenting role at home.
Interventions focus on areas of development and learning chosen by parents.
Learning activities have direct significance and relevance for the baby or infant.
Each natural learning activity is multifaceted and offers opportunities to develop and practice skills and understanding in all facets of baby and infant skills.
Development and learning proceed at the child’s pace, is unforced and is a natural part of the child and family functioning.
As with all children, the baby or infant with a multifaceted condition can take pleasure in new learning that enhances daily activity and promotes self-esteem.
Parents are reinforced in their role as they succeed in helping their child develop and learn.
The child teaches parents and interventionists about their preferred learning style.
Parents and interventionists can gauge when a move to a learning environment outside the home is becoming appropriate.
The family grows stronger.

Gillian King (King, 2009) with others has reviewed the literature on transdisciplinary teamwork and lists essential and unique operational features as arena assessment, intensive interaction among team members from different disciplines, and role release. The TAC approach I have suggested here is not full transdisciplinary teamwork because arena assessments seem, from my experience, to be such a great distance from current practice. Perhaps the TAC primary interventionist is a half-way stage (though the primary interventionist is not a defining feature of the TAC approach). For instance, with Baby M, each TAC member had separately got to know the child and family in informal sessions. This meant they had started building a good relationship with the family and had each carried out their preferred initial assessment procedures. In this way they avoided intimidating assessment events in which neither parents nor child might be seen at their best. They had then compared observations with each other before the first TAC meeting. TAC interventionists who become confident in working with families through primary interventionists will be well prepared to move to full transdisciplinary teamwork should they wish to.

Conclusion

To achieve a more sensitive and natural approach to the education of babies and infants who have a multifaceted condition, I have suggested using the primary interventionist model within the TAC approach. This offers a unique multifaceted intervention system to each child. The primary interventionist is supported by the other TAC members and applies whole-child awareness and skills to support parents in their task of bringing up their child. This approach fits as closely as possible to how all children achieve their important first learning at home with their parents in natural activities of family life. If there is a golden rule to guide this suggested service development in early childhood intervention with these children, it is that it is the job of interventionists to support parents in their upbringing tasks. It is not the job of parents to support interventionists in the programmes they, the interventionists, have decided on for the child.

References

King, G., Strachan, D., Tucker. M., Duwyn, B., Desserud, S. & Shillington, M. (2009). The Application of a Transdisciplinary Model for Early Intervention Services in Infants & Young Children Vol. 22, No. 3, 211–223.