This paper discusses possibilities of designing ethical research practice in relation to people with profound intellectual and multiple disabilities (PIMD). We will argue that in the case of this group of people, research ethics is about ethically justifiable research aims, design, methods, and practices that are based on the recognition of their equal worth as humans. We argue that the turn to emancipatory methods in disability studies has effectively excluded persons with PIMD as they implicitly assume that research participants have the kind of cognitive and communicative capacities that persons with PIMD lack. Their exclusion from disability studies is further reinforced by the theoretical tradition of the field that has emphasised the material arrangements of society, as well as the ableist cultural ideologies as key factors contributing to disabled people's social exclusion. It is problematic to apply these approaches to individuals whose lives are marked by insurmountable impairment effects. Research ethics should take into account potential disparities of cognitive ability and power between researchers and research participants. Using an ongoing ethnographic study about the lives of persons with PIMD as an example, we describe in detail what positioning research participants as moral subjects could mean in practice.

Previous research on family care has been criticized for taking the dependence of care recipients for granted. Furthermore, it has been argued that exploring the ways in which this dependence is socially created can benefit care recipients and carers alike. The author explores the ways in which current policies maintain the high prevalence of family care among adults with intellectual disabilities in Finland. A companion study analyzing the Finnish service system for people with intellectual disabilities explored its effects on the practice of family care through interviews of parents of adult children with disabilities. While the provision of community-based housing services has increased in the course of the deinstitutionalization process, it has not been provided adequate funding due to the political pressure to curb the cost of social welfare. Parents respond to these policies using two main strategies: family care and normalization. These strategies draw on different conceptions of parental responsibilities and persons with intellectual disabilities. Government cost containment policies maintain the practice of family care of adults with intellectual disabilities in direct and indirect ways. They restrict access to community-based housing services and by compromising quality, feed the view that the needs of adult children with intellectual disabilities are best met by their parents at home. These policies have implications for they raise concerns among persons with intellectual disabilities and their parents since they both restrict the possibilities of adult children to move away from home and compel parents to adopt long-term care responsibilities, often at great personal cost.

A gap between the basic principles of deinstitutionalisation programmes and reality is evident in many countries. In this article, we approach this gap, using the deinstitutionalisation process in Finland as an example, as an incongruity between progressive disability policy and neoliberal economic policies. Drawing on earlier research and reports on both the neoliberal turn in economic policy and thinking and the current state of services for people with intellectual disabilities, we explore the ways in which the neoliberal turn has shaped the deinstitutionalisation process in Finland. We argue that it has at the same time accelerated the closure of long-stay institutions and hampered the development of alternative services. We identify which neoliberal economic policies are among the most crucial with respect to the development of the system of services for people with intellectual disabilities, and then analyse their effects. We offer also a theoretical interpretation of neoliberalism, arguing that at heart it is a political project.

Vaikka kehitysvammaisten ihmisten itsemääräämisoikeus tunnustetaan nykyisin laajasti, emme ole vielä saavuttaneet yhteisymmärrystä siitä, mitä kyseinen oikeus tarkoittaa silloin, kun kehitysvamma tuottaa hyvin pitkälle meneviä rajoitteita henkilön kykyyn kommunikoida ja tehdä itsenäisiä päätöksiä. Tämän artikkelin tavoitteena on empiirisen tapaustutkimuksen keinoin kuvata ”syvästi” kehitysvammaisiksi määriteltyjen henkilöiden tapaa harjoittaa itsemääräämistä omassa arjessaan. Artikkelissa sekä käsitteellistetään että havainnollistetaan näiden ihmisten ulottuvilla olevia itsemääräämisen käytäntöjä. Lisäksi artikkeli tuo esiin tarpeen kehittää sosiaalihuollon toimintakäytäntöjä laajasti toisten tuesta ja hoivasta riippuvaisten ihmisten itsemääräämisen tukemiseksi.

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