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This report is about how three different groups of people with disabilities perceive their relationship to the Norwegian habilitation- and rehabilitation services, both at the municipal level and at the regional specialist level. Based on the experiences of 32 parents with disabled children, 6 immigrant families in the same situation, and 5 young adults with disabilities, the report highlights the habilitation- and rehabilitation services from three different perspectives. Although the three groups' experiences may be understood as interpersonal encounters, through our empirical data we render these encounters as between service-recipients and a public system. The report concerns the three groups' encounters with public bodies that are governed by a particular ideology and regulations. Our data was collected over the course of 2011. The participants' experiences are thus discussed in reference to the regulations and guidelines that were in operation until January 1 2012, when a new healthcare law came into effect. Yet, in analyzing the participants' experiences, particular aspects come to life, which ought to be addressed within the framework of the new healthcare law. The report is organized thematically. In the first chapter we present the report's focus and key issues. The following questions are important: How was contact established with the service system? What information did participants have about services prior to established contact? What are the participants' concrete experiences with coordination tools, such as responsibility groups and individual plans? In chapter two, we outline the political and ideological backdrop of the report from a historical perspective. Focus here is primarily lent to the relationship between policy developments and the practice field. Chapter three presents the three participant groups and the data collection methods. Chapter four and five are empirically oriented. In the fourth chapter, we discus aspects related to the participants' first contact with the habilitation system. In chapter five, we analyze the three groups' specific experiences with the habilitation services. Focus is on the relationship between service utilization and satisfaction. We also discuss the coordination tools, responsibility groups and individual plans. In the concluding chapter, we present our final thoughts. The cues, accessibility, visibility, and continuity can be said to sum up our findings. The accessibility dimension can be understood, not only in terms of service availability, but also in terms of how contact was established and whether information had been attainable prior to the contact. Considering that the service system is fragmented, and that local authorities can organize services in their own right, the coordination tools such as individual plans and responsibility groups appear as important. Yet, our data indicate that many of the participants were without individual plans, indicating that many municipalities have fuzzy practices when it comes to informing about and initiating plans. Many of the participants had responsibility groups, but significant shortcomings in their function were commonly reported. A problematic aspect in this regard is that the Coordinating Units, which are responsible for individual plans, can take on different forms and can be variably located within the respective municipalities. We also so found that the service apparatus is lacking in visibility. This was reflected in the fact that close to none of the study's participants reported having any knowledge about the habilitation services prior to an established contact. Our data also showed that contact with the habilitation services in many cases was established late in the children's lives. In analyzing our participants' responses about how they were absorbed by the system, we were unable to identify any systematic pattern in terms of where referrals or information about service were likely to be provided from. Nevertheless, our findings indicate that the visibility and information situation could be improved through fixed contact points. Finally, continuity appears as significant, particularly for the young adult informants. An important aspect brought to our attention in the interviews, was that the transition from the children's habilitation to the adult habilitation when reaching the age of 18 sometimes resulted in broken ties with service providers. Continuity therefore pertains to uninterrupted access to services and supplementary fulfillment of new needs arising in relation to education and work. Based on our informants' experiences, however, there seems to be a need for improved transitional arrangements that can ensure the continuation of services. For instance, arrangements are needed for direct transfers of responsibility from the child habilitation services, to corresponding arrangements for adults. In light of the informants' stories, it could be an expedient and reassuring asset to have access to fixed contact points also for the young adults. ; Rapporten omhandler de erfaringer foreldre til barn med nedsatt funksjonsevne og unge voksne med nedsatt funksjonsevne har med habiliteringstjenesten. Erfaringene som trekkes frem, skildrer både deltakernes møte med habiliteringstjenesten på kommunalt nivå og innenfor spesialisthelsetjenesten. Sentrale spørsmål som tas opp er hvordan den første kontakten med tjenesteapparatet blir opprettet, hvilken informasjon man har forut for kontakten, og hvordan man går frem for å opprette kontakt. I tillegg tematiseres hvordan ønsker om tjenestetiltak blir fulgt opp ikommunenes tjenestetilbud, og bruk av individuell plan og ansvarsgrupper. Undersøkelsens hovedfunn oppsummeres med stikkordene tilgjengelighet, synlighet og kontinuitet. På bakgrunn av deltakernes erfaringer er dette de områdene der det er et betydelig potensiale for bedring innenfor habiliteringstjenesten.

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. ; En del mennesker med nedsatt funksjonsevne kan i perioder av livet ha et behov for rehabilitering og habilitering. Barn med en medfødt sykdom eller skade kan trenge koordinerte og sammensatte tjenester innenfor ulike områder gjennom hele livet. Det tjenestetilbudet som gis innenfor habiliteringsfeltet, er både organisert gjennom kommunene og gjennom spesialisthelsetjenesten i de enkelte helseregionene. Det er unge voksnes erfaringer med habiliteringstjenesten som er denne rapportens tema. I første del gis det en fremstilling av mål og virkemidler i habiliteringsarbeidet. Først og fremst konsentrerer fremstillingen seg om den kommunale organiseringen av tjenester. Deretter presenteres erfaringer som leder av koordinerende enhet i 22 kommuner har med samordningen og samhandlingen på habiliteringsfeltet samt de erfaringer 12 unge voksne har med habiliteringstjenesten. Særlig blir utfordringer i forbindelse med overgangen fra barnehabiliteringen til voksenhabiliteringen vektlagt. Som en avslutning på rapporten legges det frem elleve punkter som kan bidra til en forbedring av habiliteringstjenesten.

In this report, we present the main findings from the project, "Assistance or barriers? – The use of education as vocational rehabilitation for young people with disabilities". Chapter 1 gives a summary of the status of knowledge regarding young people with disabilities and their transition into the labor marked. We also present an overview of the most important measures initiated by the government to increase labor marked participation for this group. In January 2004, the rules regulating who were entitled to economic support for educational purposes within a rehabilitation program changed. In chapter 2, we look into the effects of these changes. We use data covering everyone in a certain age group who were granted education as vocational rehabilitation in the years between 2002 and 2005. The analysis indicates that the changes may have resulted in both fewer young people receiving economic support for education as vocational rehabilitation, and fewer young people with disabilities entering the labor force. Chapter 3 addresses a particular group, namely young people (25-35 years) with physical disabilities, mainly defined as cerebral palsy and spina bifida. Two of the topics discussed are: The educational situation for youth with physical disabilities compared to a randomly selected population in the same age group. To what extent is the length of education for young people with physical disabilities important for their situation in the labor marked? As much as 64 percent of the sample with physical disabilities have primary school as their highest level of education, compared with 17 percent in a randomly selected youth population. The level of employment for the group with a physical disability was 38 percent, compared with 86 percent for the randomly selected group. There is a clear indication that an increase in the level of education may have a particularly positive effect for young people with physical disabilities in relation to labor marked participation. In Chapter 4, the topic is of how social workers in NAV administer the regulations that govern access to education as rehabilitation. We start with a brief review of the rule changes in rehabilitation support that was introduced from January 2004. The chapter is based on qualitative interviews with 30 caseworkers in NAV (The Norwegian Labor and Welfare Administration). There is a political ambition that in general young people (under 26 years) shall finance their own education through loans and grants provided by the Norwegian State Educational Loan Fund. This is also true for young people with disabilities, when they do not have so significant impairments that they fall within the exemption criteria. Many of the informants share this point of view. They find it unreasonable and unfair to other young people if young people with disabilities receive economic support to pay for their educational expenses. They should not have any "special advantages" even if they are disabled. Chapter 5 addresses the issues of judgment and discrimination, and discusses what discretion is and how the caseworkers in NAV practice it. Among other things, it is discussed how the use of discretion can be affected by factors "outside the formal rules and regulations". In chapter 6, the perspective moves a notch up. Instead of questioning the issue if all young people with disabilities get the same or an equivalent treatment in the NAV system, we look at the situation for disabled young people compared to the situation for other young people. Using the ideas of justice developed by Amartya Sen, in particular the capability approach, we ask if is fair that young people with disabilities as a rule should finance their education themselves? One of the reasons for asking this question is that young people with disabilities cannot expect to achieve the same life-cycle income as others. ; Unge med nedsatt funksjonsevne har en lavere deltagelse på arbeidsmarkedet enn befolkningen ellers. I rapporten benyttes to sett registerdata for å belyse dette temaet. Videre benyttes intervjuer med saksbehandlere i NAV for å belyse forvaltningen av dagens regelverk for støtte til utdanning. Den første registerstudien indikerer at reduksjonen i støtte til utdanning fra 2004 reduserte antallet som fikk støtte til utdanning. Færre ble også yrkesaktive. Den andre registerstudien viser at et flertall unge med en fysisk funksjonsnedsettelse bare har grunnskole som høyeste fullførte utdanning, og at en stor del faller utenfor arbeidsmarkedet. I den kvalitative undersøkelsen sier mange saksbehandlere at de forvalter det nye regelverket slik at de sjeldnere enn før benytter utdanning som tiltak.