dc.description.abstract | According to the Norwegian Health and Care Services Act, municipalities shall provide respite for individuals and families who have a particularly heavy burden of care, whether they are voluntary caregivers or parents obliged to care for underage children. The purpose is to prevent negative consequences to the caregiver’s health, stress and fatigue, and give the caregivers necessary and scheduled time- off with an opportunity to participate in ordinary activities. In 'Future Care', Report to the Storting (White Paper, No.29, 2012–2013), the Government presents a program for an active, future-oriented informal care policy that will create a framework that makes it easier to combine paid work with caring for children, adolescents, adults and elderly (with serious illness, disabilities or mental health and social problems). Developing better and more flexible respite services is therefore important. This report addresses questions relating to the organization of respite services in Norway, which services the municipalities provide, user characteristics, and variations in type and scope of services the municipalities offer. Other aspects are what criteria caseworkers use when they allocate respite services, what alternatives and flexible solutions the municipalities actually offer, and what challenges they face in this context. The empirical material in this report is quantitative and qualitative. The statistics stem from the IPLOS-register – individual-based nursing and care data, compiled from all municipalities by the Norwegian Directorate of Health. The qualitative data is from interviews we had with managers who are responsible for allocating and coordinating health and care services in 20 Norwegian municipalities. The quantitative data distinguishes mainly between recipients of respite services within and outside institutions. This study is commissioned by the Norwegian Directorate of Health, with the intent to acquire knowledge that can enhance and develop the respite services. Characteristics of the services An analysis of the data from the IPLOS-register (per 12.31.2012) shows that the majority of the recipients are younger than 67 years old. Respite services are mainly given to care-dependents who live with relatives who provide the care. The largest group of recipients are children and youth living at home. The qualitative study shows that respite for parents of children with disabilities and special needs is primarily offered individually in their own or private homes and/ or as respite in auxiliary housing. The statistical data shows that larger municipalities spend more resources on institutional respite than smaller municipalities. In small municipalities, the recipients on average receive more hours of respite outside institutions than those in larger municipalities. Most recipients of respite services, whether within or outside institutions, are male. Very few elderly and their relatives receive individual respite services outside of an institution - as much as three out of four recipients of individual and private respite are younger than 18. Respite services are rarely offered to adults who provide extensive care for their parents when they do not live in the same household. The qualitative study reveals that respite for relatives of elderly living at home usually consists of placement in a nursing-home (for days or weeks) according to a set schedule and/or day-care in an adult day-care center. Elderly receiving family care usually have extensive needs for care due to dementia, stroke or chronic illness. The municipalities also have home-based services and various other types of assistance (e.g. practical assistance, cash for care, personal assistants and companion-services) that are considered along with respite care for young and elderly care-dependents. Criteria used to grant respite services The legislation on eligibility to respite services permits the exercise of discretion when assessing applicant’s needs. The caseworkers decide whether the law’s criteria for “particularly heavy burden of care” is met. Our interviews show that if the caregiving is physically & mentally straining for the caregiver, that affects granting of respite services. Other aspects that are emphasized are the extent and duration of the care given, social isolation, and lack of vacation and spare time. The municipalities differ in their allocation practices. Some municipalities emphasize what the caregiver finds taxing and exhausting (subjective criteria). Others focus more on aspects such as the number of sleepless nights, type of tasks, age and diagnosis (objective criteria). A few municipalities have developed their own set of criteria and guidelines to establish more contingent and standardized practice. Needs, possibilities and challenges The impression from the interviews is that the scope of respite services varies between municipalities and that there is a shortage of places for respite in the smaller and medium sized municipalities. Several managers reported that budget cuts and the retrenchment of the municipalities’ finances have had consequences for services that were planned, and lead to stricter practices for allocating respite. Small municipalities reported that they did not have enough capacity and a limited number of places for institutional respite and accommodated housing for youngsters with disabilities. In addition, the pressure on institutions offering respite has increased due to new groups of users. This study reveals that the municipalities, to a limited and variable extent, have started to use new and innovative ways to fulfil their obligations to provide respite. According to our informants, the following schemes allow for more flexibility: giving the caregiver freedom to use the hourly granted respite when needed, increasing availability to short-term institutional places in emergencies, extending the opening hours at adult day-care centers and flexible working hours for institutional staff. A few municipalities have developed alternatives that supplement the traditional respite services. Examples are individual respite for people with dementia, stays and activities on farms for younger and older recipients, activity based types of respite, and after-school respite. Public services’ shift away from institutional care towards more home based services require that the municipalities develop new and flexible types of respite services. The qualitative study reveals that smallest municipalities often lack satisfactory day-care centers and that they use nursing homes as the most common form of respite for elderly with dementia, who still live at home. This is one of many challenges. The growing number of new and younger groups of users has also lead to an increasing demand for alternative ways to provide respite for children and youth with special needs (e.g. autism, Asperger and psychiatric diagnoses), according to the managers we have interviewed. The main impression is that there has been too much use of “standardized solutions” in the respite services, limited to using traditional institutions and individual respite. The challenge is to find appropriate options and develop new solutions in collaboration with the specialized health services. | en |