Habilitering som koordinerende tiltak

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