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Habilitation through activities in water

Artiklen publiceret i:
Akademai Wychowania Fizycznego Józefa Pilsudskiego w Warszawie,
Wydzial Wychowanie Fizycznego i Sportu w Bialej Podlaskiej (2014):
Movement Activities in disabled Children and Youth

Bodil Føns Knudsen

Kerteminde, Denmark
mail@bodilfoens.dk

Physiotherapist
M.A. Educational and Professional Development
M. Sc. Sports and Health
IHA recognized Senior Halliwick Lecturer
University of Southern Denmark (SDU)

 

Habilitation through activities in water

The present paper is a study of available offers of activities in swimming pools and conceptual understandings across sectors. It consists of an analysis of water activities on offer for children and youths with focus on children and youths with disabilities. The study involves public institutions/ organisations, sports clubs and private initiatives in local municipalities across the different legislation within sectors. From this data material and with seven qualitative research interviews, the study provides an account of concepts and conceptual understandings which are used in the description and administration of the available offers of activities in water.

Introduction

Conceptualization of disability is influenced by our previous knowledge (Grönvik, 2007). The girl can swim independently. Should this girl in the pictures be categorized as disabled? On land she is using a wheelchair.

The girl may by different professionals be categorized as “a child with disabilities”, “a child with impairments”, “a child with functional difficulties”, “a child with special needs”, “a child with a handicap” or “a child with a diagnosis”. This gives complexity of conceptual understandings and is a large challenge in research across sectors.

I decided to use conceptual understand in International Classification of Functioning, Disability and Health (ICF and ICF-CY for children and youth) (WHO, 2001, 2007) in concordant with my historical professional education and socialization as physiotherapist.

The children and youth with disabilities are not a homogeneous group, as their disabilities are individual and very different. The conceptualization and understanding of people with disabilities is influenced by the community’s social development and the economic conditions. Especially significant is the influences categorizations of disabilities by the media. These concepts are personally tied together in time (Kirkebæk, 2013). How does it reflect in everyday life practice for professionals?

Some studies have focuses on, how professionals in daily practice identifies the need for habilitation and offers programs for people with disabilities. Who is a qualified assessor? Which assessment tools are used – in the various sectors? Various legislations, as well as demand and support possibilities in the present system were described. (la Cour et la, 2011).

This article is based on the study: “Habilitation though activities in water” (Knudsen, 2014).

The aim of the study was to acquire knowledge of how conceptual understandings in legalization and administration in daily practice across sectors, leads to possibilities or barriers for offering activities in water for children and youths with disabilities. And how the offers can be understood from a perspective of habilitation?

 

What do you mean – which children?

The survey had a large challenge in communication with the informants regarding the amount and variability of categorizing the children with disabilities. My use of terminology from WHO´s ICF: children with disability (danish: “nedsat funktionsevne”) was not understood by professionals from Public Schools: “What do you mean – which children”. In collection of data from the private schools I changed my choice of terminology according to the Unit at the University: “Center for Handicap and Bevaegelsesfremme”.

The category the informant had to relate to was changed from: “children with disabilities” to “children with handicaps”. But also then, the many telephone interviews in the survey, emphasizes the nuance in difference in the informants interpretation of the conceptualizations: “Yes, we have some pupils – but none in wheelchairs”. “We received large grants for special education”.

The Swedish sociologist Lars Grönvik (2007) has in his studies in Health and Social sectors identified five different definitions of disability – a “Family of definitions”. The first is a Functional Definition of the criteria: disability as a lack of or restrictions of bodily functions. It is a well-known definition in medical professions and is often the basic criteria for the need of habilitation, training ect.

The second is Relative or environmental Definition with the criteria: disability appears in the relation between a person with impairment(s) and inaccessible surroundings.

The third is the British Social Model (e.g. Oliver, 1990) with the criteria: disability is the oppression of and a barrier against people with people with impairments. A central point is then, the impairments has not a causal connection to the persons disability.

The fourths is the Administrative Definitions with the criteria: Disabled people are those categorized by the welfare state as being in need of/or eligible for certain support systems. The definition is supposed to aid the descisions making and the distributing of the resources of the welfare state. Regarding this Grönvik found in his research the number of disabled people in Sweden is very variable according to the definitions used. The National Board of Health and Welfare found in 2006: 50.000 people using administrative definition. And Szebehely et al. found in 2001: 1,3 million people by using functional definitions.

The fifth is the Subjective Definitions with the criteria: People perceiving themselves as disabled, irrespective of the basis of such perceptions. In the social and the relative models the understanding of disabilities becomes incomplete as the models leave out the consideration of the experience, as well as the restrictions or consequences of the impairments (Grönvik, 2007, 2011).

The Legalizations has different background in relation to the Family of definitions. A World Report on Disability from WHO describes:

“Disability is part of the human condition. Almost everyone will be temporarily or permanently impaired at some points in life, and those who survive to old age will experience increasing difficulties in functioning” (WHO, 2011, page 3).

Understanding The ICF-CY definition is a challenge to the administration of offers in public systems. When does “difficulties in functioning” entitles a child to be categorized as a child with disabilities? And who can and who cannot receive support? But who is authorized to decide and according to which criteria?

An example: the recreational offer in the swimming clubs received economic support from the municipality for all people less than 25 years old. The legalization uses the category: People with special needs (Folkeoplysningsloven, 2011). But the local administration uses the criteria: “participants with handicap” for doubling the financial support per individuals. In the interview I asked the Administrator how I could understand the translation between special needs and handicap. She explained, they had had a discussion with the sports associations and continued:

“We choose then… the bit pragmatic solution to summit it to people themselves … it’s you who decided if this child or adult is handicap or not in relationship to the activity” (administrator, my translation).

The parents can write a Solemn Declaration, testifying that their child has a handicap and the swimming club received the double financial support. According to Grönvik’s “Family of definitions” the administration’s pragmatic solution is an attempt to make the impairments relative to the activities. But the parents can use their personal understanding of how they categorize their child with disabilities.

In the study there seems to be differences, but also parallel tracks in conceptual understandings and in distinctions in the categorization of “children with disabilities”, “children with impairments”, “children with functional difficulties”, “children with special needs” and “children with a handicap”. None of the four legal foundations (Health, Social Service, Education for Children and Youth or the Education in Leisure time) use the categorization: “people with handicap”. The study was able to analyze more or less clear conceptual changes in the categorization of children into at least four levels from the legal foundation, to departmental order, to guidelines and to definitions and assessments in administrative practice.

You say disability; I say handicap or special needs.  

The Guideline for Rehabilitation in the Municipalities (2011) is written by four Ministries (Health, Social Service, Employment and Education) and is using the conceptual understanding of ICF and recommends the use of ICF as a language across sectors. The word habilitation is used among professionals in practice but not yet official papers.
The Physiotherapist and Occupational Therapist have for several years used ICF-CY as framework for their descriptions of the children. In the survey the professionals at schools failed to understand me, when I used the category from ICF-CY: Children with disabilities (danish: nedsat funktionsevne).

In the qualitative research interviews with a phycologist (as administrative leader), Principal of a school for children with special needs and a staff member from a school for children with special needs, I searched for their knowledge about ICF-CY. They all describe their work as being interdisciplinary with the therapists. In the interviews I made a short presentation of ICF-CY regarding the Guideline for Rehabilitation and asked to tell if they had some experience with the use of ICF-CY. The Principal replied:

“In fact I don’t even know, what it means.” (my translation)

The principal is in agreement with the two others informants, that the use of ICF-CY is not well-known among the colleagues of the therapists. They also agreed that the guideline published by The Ministries (2011) three years ago, has not accomplished its purpose of implementing the use ICF in the interdisciplinary work with the children and youth with disabilities.

The phycologist informed that the category “children with handicap” is less used today among her colleagues than just a few years ago. They use the category: “children with impairments” instead.

The offers of activities in water

In the survey the informants description of the planned and time limited activities in water is connected to many different terminologies and conceptualizations, which includes professions: swimming, swimming for disabled, adapted swimming and movements, activities in water as ex. diving in water or diving from a platform, hydrotherapy, aquatic therapy, treatment in water, physical activities in water, training in water, physical training in water, gymnastics/physical exercise in water, physical education for pupils in water, water activities and swimming as a part education for children with special needs.

Normal practice in the municipality of the survey is, that all children have an offer of physical education in water. The public and private schools gives the offer in 4. or 5. grade. The survey was not able to give any information about children with disabilities as result of severe physical impairment, weather they have an inclusive offer at a local school. Most likely many of them are not able to participate because of inaccessible surroundings in the local swimming hall.

The schools for children with special needs in education can offer for some children with specific impairments activities in a hydro pool for several years of their schools life. The children with disabilities as a result of multiple impairments have ones a week activities in hydro pool through out of their school life.

 

Activities in water from a perspective of habilitation

Habilitation is based on a holistic view of both the child and its relative’s situation and seeks to promote optimal body function, learning, independence and confidence, as well as helping to encourage social development (Lie et al. 2011). Public offers towards promoting functional ability of the children may be treatment in water, exercise in water or swimming under different legislations and organized conditions.

The principal of the special school views the weekly swimming sessions or activities in water as the best learning opportunity for the children with disabilities as result of multiple impairments. He explains:

“They can if anyone experience to be free in water…. be able to stand in water. It gives them a fantastically quality of life. We also work with movements... They simply love it.” (my translation)

From a phenomenological perspective, in the pool, the child experiences the body’s “being-in-the-world” as being different to on land. It has among other things to do with the buoyancy of water. When the child can stand up in water or move more than on land, the child’s experience of being less functionally limited gives the experience – “I can” (Merley Ponty, 1994, org. 1945, Kissow, 2013). It gives the child an opportunity to develop their functional abilities in order to achieve as much independence and meaningfulness in the activity as possible.

Seen from a habilitation perspective, the phenomenon of “being free in water” and the skill “to swim” can be bound together with the child’s function and coping ability, physical dimensions as well as adventure and learning dimensions and with the child’s participation in social contexts.

The study shows that participation in swimming during leisure time, is greatly important for the social community spirit that develops between young people with disabilities, who have an inclusive offer at local schools. The instructor in the swimming club tells a history about youth, who one evening was the only boy, who has showed up. He broke totally down and started crying, and told the the instructor:

“Now you must not be angry at me, when I tell this. In fact I do not come for swimming. But I come for meeting my friends”.

Nyquist (2012) has in her interviews of children with disabilities found that participation with friends with disabilities in sports activities in recreational context is crucial for the children not have the feeling of being alone in their situation.

 

Conclusion

With a broad holistic view habilitation can be seen as more than primary medical habilitation but also include dimension of learning and subjective experience of physical activities (Nyquist, 2012). The benefits from activities in water are multiply from a health- and healthiness perspective, knowledge and subjective experience perspective and a sports perspective. But more often than not, are children with disabilities reprieved from these offers due to unclear use of terminology amongst the care- and the service providers.

Litterature:

Bonfils, Inge Storgaard et al.(red.) (2013): Handicapforståelser. Mellem teori, erfaring og virkelighed.
København: Akademisk Forlag

Grönvik, Lars (2009, org. 2007): Defining disability: effects of disability concepts on research outcomes.
International Journal of Social Research methodology, Vol. 12, NO 1, February 2009, 1- 18

Grönvik, Lars (2007): Definitions of Disability in Social Science. Methodological Perspectives.
Uppsala: Uppsala Universitet

Grönvik, Lars (2007b): The fuzzy buzz word: conceptualisations of disability in disability research classics.
Sociology of Health & Illness Vol. 29 No. 5 2007 ISSN 0141- 9889 pp. 750-766

Indenrigs- og Sundhedsministeriet (2011): Vejledning om kommunal rehabilitering – VEJ nr. 9439 af 13/07/2011 – Guideline for Rehabilitation in the Municipalities.

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Ph.d.-programmet i Hverdagslivets Socialpsykologi, Institut for Psykologi og Uddannelsesforskning
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Odense: Syddansk Universitet

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I: Hjortbak, Bjarne R. et al (2011): Udfordringer til rehabilitering i Danmark
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Frederiksberg: Det lille Forlag

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World Health Organization (2003, org. 2001): ICF – international klassifikation af Funktionsevne, funktionsevnenedsættelse og helbredstilstand
Translated by Gunnar Schiøler og Tóra Dahl (red.)
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