Funksjonsnedsettelse, oppvekst og habilitering

For most people the transition from childhood/youth to adulthood is a major upheaval – in physiological, cultural and social terms. For young people with a disease that is either congenital or acquired early in life, or with an injury that reduces functional capacity, the transition can involve further challenges – of a health-related nature. The theme of this report is the transition to adulthood within the framework of the habilitation service. Our aim is to shed light on challenges that youngsters needing a combination of coordinated services face in relation to the services established for them, and which are to assist them in childhood, upon transition to adulthood and later in life. Our point of departure is that if functionally impaired young people are to participate successfully in adult society, their need for health-related services must in each case be met in a manner commensurate with the challenges posed by the individual’s health situation. This report deals with young people who have entered employment or are completing their education. In addition, they live in their own dwelling away from the parental home. These can be said to be young people whose inclusion in important social arenas has a «success». Hence the report seeks to illuminate the role of habilitation in the process prior to the present situation. This is achieved by means of interviews with two groups of informants. The first group comprises young adults with functional impairments. The second group comprises staff of coordinating units in a selection of Norwegian municipalities or municipal wards. The first chapter is a general introduction to the issues addressed in the report, while the second chapter expounds the habilitation field, its organisation, aim and main tools. Chapter 3 reports on the main findings of an interview survey with heads of coordinating units in a selection of Norwegian municipalities. Our particular focus is on issues related to collaboration within the municipality, between the municipality and the specialist health service and the transition between childhood/youth and adult life. The decision to interview the head of the coordinating unit in the respective municipalities was taken upon the advice of the Norwegian Directorate of Health. Chapter 4 discusses functionally impaired youngsters' experiences with the habilitation service and seeks in particular to elicit experiences from the transition from child habilitation to adult habilitation. Chapter 5 summarises the main findings and proposals some initiatives that may ease the transition from child habilitation to adult habilitation for the individual young person. Habilitation and rehabilitation are defined as: “Time-limited, planned processes with clear-cut aims and instruments, where two or more actors collaborate to provide necessary assistance to the users' own effort to function and cope to the best possible degree, to achieve independence and to participate in social and community life.» This is the definition of (re)habilitation employed today in official documents and which guides policy formulation in this field. The basis in law for habilitation and rehabilitation is set out in various statutes and regulations to ensure that the individual’s need for a combination of coordinated services is met. Each municipality is obliged to have in place a coordinating unit with overall responsibility for habilitation service provision, and specialist health services include a rehabilitation unit catering to children and young people that is affiliated to and under the responsibility of a regional health trust. This responsibility can be transferred to a department of the regional health trust at a later stage. Both levels of administration are required to offer services that are: 1. based on a user perspective, 2. coordinated, cross-disciplinary and planned, 3. in or as close as possible to the user’s customary environment, and 4. provided in a context meaningful to the user. The empirical part of the project is based on interviews with two different groups. One group comprises managers of the coordinating unit in 22 municipalities or municipal wards. This survey brought to light wide differences between municipalities as regards the organisation of the habilitation service and as regards how they discharged some of the tasks they were expected to perform. All the informants were concerned to improve the service offering to users who fell within the habilitation remit and were thus in need of a number of services the coordination of which was crucial to good service provision, municipal services and second-line services alike. No one was absolutely happy with the situation at the time of reporting although several informants reported an organisational set-up that appeared sound. The informants were clearly preoccupied by the challenges faced by functionally impaired young people upon the transition from youth to adulthood. A majority of the informants made it clear that the quality of the habilitation service, both municipal and second-line, was crucial to young people’s ability to tackle the transition to adult life and the challenges they would face in areas such as education and employment, setting up a home and taking on greater responsibility for coordinating social services and health services. An important step in improving the municipal habilitation service would be to assign responsibility for it to a higher level of municipal bureaucracy than is usual at present. Several heads of coordinating units noted a mismatch between responsibilities and work assignments on one hand and the formal power or decision authority available to them in the municipal system. One possible model, to which attention was drawn, was to assign management of the service to a staff function under the chief municipal executive and to draw up guidelines and in the event an authorisation structure for initiatives involving various service performers. It would be important here to clarify responsibilities for and decision authority in relation to services administered by the Labour and Welfare Administration. The second survey comprises interviews with 12 informants in the age range 22 to 31, six females and six males. All have a diagnosis involving varying degrees of impaired physical functioning. Poor balance and reduced mobility are reported by many. Some use a wheelchair all day, others use a wheelchair in particular situations and to move over longer distances. Poor motor function, including poor fine motor control, makes using a keyboard problematic for some. All in all this part of the survey showed wide variation in the informants’ experience of how well the habilitation service functioned in terms of coordinating various types of measure and in relation to assuring service continuity. The survey also showed wide variation in the role of the responsible doctors. This is attributable both to the differing priority assigned to habilitation-related work by different doctors and to variations between municipalities in the emphasis given to drawing doctors into this work. The survey also shows that, in the case of a number of informants who are prioritised for residential rehabilitation, the main rationale is to enable medical follow up of their diagnosis. The transition to adult habilitation is an important theme for many. Several of the informants believed they were given insufficient information about various schemes and programmes after they had reached the age of 18 and were no longer in child habilitation. It was now up to them to seek out the programmes and services they needed. Several experienced this situation as difficult. After being in child habilitation, where most of them felt they were taken care of, the transition to adult habilitation was a radical change. They are now personally responsible for applying for and coordinating the health services on which they depend. The situation is most difficult for those whose diagnosis does not place them within the remit of one of the country's competence centres. The report closes with 11 points on which the habilitation service could be improved to bring the range of services offered to users more into line with the legislation and the intentions as regards service quality and scope that are enshrined in central public documents