What's in a word? Distinguishing between Habilitation and Re-habilitation

The word ‘Habilitation’ originates from Medieval Latin, meaning ‘made able’ (Oxford Dictionaries, 2019a). Over time, the word has developed new meanings in different linguistic contexts. For example, the French definition is ‘to dress’ whereas the Germanic version of the word pertains to ‘self-contained university teaching’. The Oxford English Dictionary defines Habilitation as ‘enabling or endowing with ability’ (Oxford Dictionaries, 2019a). Arguably the common denominator in these definitions is the implicit reference to independence of some sort. The multiple applications of the word demonstrate the breadth and variability of the term, yet, has no concrete application to a population nor condition. Varying medical definitions support a similar notion (particularly compatible with the Oxford English Dictionary definition), however, the focus is on the maximizing of independence for children and young people with impairment(s) regarding the achievement of physical, cognitive and psychological developmental milestones (Miller-Keane and O’Toole, 2003). Contrastingly, rehabilitation can be defined as ‘an individual’s restoration to health through training or therapy after imprisonment, addiction or illness’ (Oxford Dictionaries, 2019b) or ‘the action of restoring something that has been damaged to its former condition’ (Oxford Dictionaries, 2019b). On the basis of definition alone, the two terms vary; Habilitation being oriented toward development in younger populations with disability and Rehabilitation focused on a form of recovery.

Habilitation, in medical terms and pertaining to child development, was a concept identified in the mid nineteenth century (Rosen et al., 1977). The term referred to optimizing the development of individuals with developmental disabilities, the focus of this paper. Arguably, the concept of Habilitation was ahead of its time; public opinion toward disability was negative, and those with disability were socially ostracized. Public attitude toward practitioners who supported Habilitation techniques, however, was largely positive (Rosen et al., 1977). This was because the practice-based approach supported inclusive practice and employment opportunities for those largely considered unemployable.

A negative shift in opinion occurred when it was observed that children receiving Habilitation services were not attaining academically as highly as predicted, nor were their behaviors considered socially acceptable (Rosen et al., 1977). This was problematic, as it was believed that Habilitation would also work with delinquent adults (given the same opportunities). With hindsight, it would appear there was a general misconception between understanding that individuals with disability would largely need lifelong support and what is now considered ‘developmental delay’. Developmental delay refers to a difference between the chronological age and the mental/developmental age of an individual. There are two types of developmental delay outlined in the literature: persisting and resolving. Persisting refers to a consistently lower performance compared to a typical trajectory (Thomas and Knowland, 2014). Resolving can be categorized in terms of transition toward a typically developing trajectory: low (minimal), good (moderate) and high. Individual differences need to be accounted for, and in Habilitation terms, heterogeneity of variance is assumed as no two children develop in the same manner (Warren, 1984).

Habilitation is currently conceptually defined as the teaching and developing of mobility, orientation and independence skills in children preparing for adulthood (Miller et al., 2011). Habilitation techniques are practiced and utilized in everyday situations, adapting and evolving as the individual transitions across developmental stages (Miller et al., 2011), arguably aiming to maximize each individuals’ independence. In the USA, individuals with developmental disabilities (now disorders) were placed alongside criminals as it was perceived that they were incapable of daily function (Rosen et al., 1977). This meant that they were restricted to developing independence skills and obedience: arguably the antithesis of Habilitation, despite encouraging independence.

Public opinion during the turn of the twentieth century acknowledged that ‘intellectual disabilities’ could not be fully compensated for, despite specialist schooling. Individuals with developmental disabilities were institutionalized until 1920 to 1960, where inclusion was once again in vogue. This conveniently coincided with the increase in war veterans (WW1, WW2 and Vietnam), where soldiers required rehabilitation support for non-mortal wounds that resulted in lifelong debilitating conditions. In the USA, the Civic Vocational Rehabilitation Act (1920; citied in Rosen et al., 1977) provided rehabilitation techniques targeting return to employment for those who had acquired an impairment as a result of the war. The amendment of this Act (1943; citied in Rosen et al., 1977) then incorporated those with developmental disability into re/habilitation programs. This might be the source of the disparity between the two terms, as although both terms encourage and support independence and employability, the underlying conceptions are different, as shown in Figure 1.

Figure 1.

Figure 1 shows that Habilitation is centered developmentally. The term specifically refers to those with special educational needs and disabilities that have been present since birth or early infancy (Miller et al., 2011). Rehabilitation is physiologically based and is a means of supporting the re-acquisition of skills where a previously typically developing, independent individual has experienced a sensory or physical impairment resulting from war or domestic injury and needs to re-learn skills (Miller et al., 2011). Habilitation training and support is targeted at individuals who have not previously acquired skills for independence, and their skill acquisition relies on systematic instruction designed to progress their development in the context of impairments identified in the early years of life. Although current Habilitation techniques have used rehabilitation as a basis (e.g. see Klein, 1983; Fairnham Johnson, Kain, Kain, McCauley and Steele, 2002), this is arguably inappropriate. This is because rehabilitation neither theoretically nor practically accounts for child development from birth to adolescence.

The difference between habilitation and rehabilitation is important in the case for early intervention. When learning a skill for the first time (habilitation) there is an evidence base for learning skills as early as possible, particularly before age 6 (see Shonkoff and Meisels, 2000; Fazzi, Signorii, Bova, Ondei and Bianchi, 2005) because the majority of developmental changes occur in this period. Casey et al. (2015) supported the notion of a cortical ‘sensitive period’ by which neural substrates and behavior are particularly responsive to certain experiences. Given the early emergence of motor skill development in infancy, early motor stimulation in children with developmental disorders could appeal to the critical period for stimulus-induced plasticity in the motor domain. Providing habilitation as early as possible reduces ‘bad practice’ that would then have to be corrected at a later stage, by which maturation may have occurred in some cortical regions, subsequently making motor skill acquisition more complex (Ward, 2010; Murgatroyd and Spengler, 2011). Habilitation accounts for the physical, cognitive, and emotional development of children and young people, taking an age/stage appropriate trajectory. Referring to work with children as rehabilitation adopts adult-centered principles, including an erroneous assumption of prior knowledge that might be reclaimed, with little or no modification to align with typical child development (Warren, 1994).

The Quality Standards (Miller et al., 2011) for working with children and young people with visual impairment(s) (CYPVI) in the UK reintroduced the term Habilitation, ‘recognising the distinct needs of children moving toward independence and acquiring new skills’ (Miller et al., 2011, p. 2). Habilitation is now explicitly mentioned in the Special Educational Needs and Disabilities Code of Practice 0 to 25 years in England (DfE and DoH, 2015), so extends beyond CYPVI. This means that Habilitation provision is available for children with special educational needs and disabilities in the English national context. Although not explicitly mentioned in legislation in the remaining three devolved nations (Northern Ireland, Wales and Scotland) the UK (collectively) is a signatory to the United Nations Convention of the Rights of Persons with Disabilities (EBU, 2014) which specifies the right to Habilitation provision (Article 26), and so the imperative to provide Habilitation support has international implications. Sweden, for example, is examining Habilitation provision relative to the International Classification of Functioning, Disability and Health (Raghavendra et al., 2007).

Despite the increasing awareness of the term and use in legislative documents, many professionals, practitioners, and researchers still choose to use the term rehabilitation. This conflation of the two terms is problematic. Issues potentially occur in Local Authorities and Service Providers in delivery of appropriate training, in training appropriate professionals, and in funding services. It is acknowledged in the UK, that habilitation is a niche area with a defined training pathway for Registered Qualified Habilitation Specialists. However, there are insufficient personnel available to provide services, and so some Local Authorities employ Qualified Teachers for Visual Impairment, Rehabilitation Workers or Mobility Specialists to serve this role. Habilitation was recognized in the Special Educational Needs and Disabilities Code of Practice (2015) that was co-authored by the Department for Education and the Department of Health England (DfE and DoH, 2015). As a by-product of this co-authorship, boundaries appear blurred as to whether Habilitation provision falls under Health, Education, or Social Care. This blurring extends to budget holders, and the responsibility of ‘who pays’ remains unclear. Research by Blind Children UK (2016) revealed that budgeting constraints were one of the reasons why Habilitation is less recognized than rehabilitation and mobility provision. Nevertheless general awareness of Habilitation appears to be increasing (Hogg et al., 2017).

Understanding the differences between Habilitation and rehabilitation is important, because:

it informs research methodology and design bespoke to children and young people;

Changes in language reflect societal and political trends, and the use of Habilitation as a separate concept from Rehabilitation suggests a better understanding of special educational needs and disabilities and the importance of listening to the voices of advocates. Using the term ‘Habilitation’ preserves the child-centered, developmental focus of professional practice and research. It recognizes that learners with low vision or blindness, particularly children and young people are often not returning to knowledge or skills previously known, but are becoming clothed or equipped for a new future that requires cognitive, behavioral and physical development. The skills developed in children and young people are without prior learning, and so re-learning is not fitting. The use of the term rehabilitation should arguably be reserved for individuals who require restoration or recovery toward a previous typically developing state. Children with special educational needs and/or disabilities do not fall within the remit of rehabilitation as there is no requirement for restoration nor recovery for a child or young person with special educational needs and/or disability. The concept of Habilitation encompasses the developmental history of a child or young person and through systematic and consistent training and support, helps shape the child/young person in maximizing their independence and reaching their full potential. Contrastingly, rehabilitation reverts an adult to a pre-existing state as best possible, as a direct result of illness/injury that has caused an impairment of some kind. There are indeed many strengths and benefits to both disciplines and this commentary does not seek to cast shadow on the field of rehabilitation, yet this commentary advocates for a fitting use of terminology pertinent to the relevant populations. This use of accurate terminology has bearing on government policy, schooling and provision of services and ought to be considered when referring to children and young people with special educational needs and disabilities.