UUTUKAISET 1/2011 Hyvä lukija, Uutukaiset on uusi sähköinen tiedotuksen foorumi Kehitysvammaliiton kirjastosta. Nimensä mukaisesti kussakin Uutukaisten numerossa kerrotaan mitä merkittävää uutta johonkin ajankohtaiseen teemaan liittyen on hankittu kirjaston Kevali-kokoelmaan. Uutukaiset alkaa ilmestyä kaksi kertaa vuodessa, touko- ja marraskuussa. Jokaisessa numerossa esitellään lyhyesti 4 6 teosta sekä 4 8 artikkelia. Tämän ensimmäisen numeron teemaksi olen valinnut itsemääräämisen (self-determination) ja yksilökeskeiset palvelut ja tukimuodot. Edellisten lisäksi Uutukaisissa tiedotetaan Kehitysvammaliiton omista julkaisuista (sivu 9). Viereinen kuva on uusimmasta julkaisustamme. Toivon, että Uutukaiset innostaa tutustumaan esiteltyihin aineistoihin sekä katsomaan internetistä mitä muuta uutta tai muutoin kiinnostavaa materiaalia on Kevali-kokoelmassa. Suvi Vaarla (toim.): Alkoholin vaurioittamat Raskaudenaikaisen alkoholinkäytön vaikutukset lapsen elämään Sisko Puustinen Kirjastonhoitaja Kehitysvammaliiton kirjasto
Uutuuksia Kevali-kokoelmassa TEEMA: itsemäärääminen ja yksilökeskeiset palvelut ja tukimuodot Julia Fitzpatrick Personalised support: how to provide high quality support to people with complex and challenging needs learning from Partners for Inclusion Sheffield: The Centre for Welfare Reform, 2010. - 72 p. ISBN 978-1-907790-04-1 (pdf) Verkkojulkaisu: www.centreforwelfarereform.org/library/by-az/personalisedsupport.html Ote Jim Mansellin esipuheesta: [...] This account presented here illustrates two overarching principles of organisation in Partners for Inclusion. First, everything is referenced to and judged against its impact on the quality of life of the poeople the organisation supports; this means not only the way staff work, but how human resources, housing, finance and monitoring are carried out and how the organisation is designed. Instead of expecting people to fit in to arrangements designed for administrative ease, the organisation does its best to desing arrangements around the people it supports. Second, there is a high level of attention to the detail of how people want to be supported. Instead of leaving staff to work things out for themselves, risking inconsistency and ineffectiveness, Partners for inclusion pays attention to thinking through what each person needs and to continually adapting and refining the support provided. [...] Andrew Tyson (ed.) Personalisation and learning disabilities: a handbook Brighton: Pavilion Publishing ja In Control, 2011. - viii, 257 p. ISBN 978-1-908066-13-8 Ote kirjan johdannosta: Personalisation is about people, not as passive recipients of services, but as active citizens with preferences and with a contribution to make. An example is people with complex needs: their contribution is unlikely to be productive in the usual sense, but many people with complex needs are loved hugely and love back. They can give back emotionally, give great joy, especially as they become happier 2
with support that really meets their needs and wishes. This is the greatest change resulting from personalisation and many families are seeing this. To move from the old system to a new personalised system, we need leadership. This book is about leadership. It is also about personal budgets, but it is important to remember that personalisation is about much more than personal budgets. Personalisation is about more than individuals with money to spend on the support they need. It s about people as members of communities and about how those communities can change to make life better for people. [...] Sarah Carr Personalisation: a rough guide (rev. ed.) London: Social Care Institute for Excellence SCIE, 2010. - vi, 82 p. ISBN 978-1-904812-48-7 Verkkojulkaisu: www.scie.org.uk/publications/reports/report20.pdf Kirjan takakannesta: This publication aims to tell the story so far about the personalisation of adult social care services. It is intended to sketch out our current understanding of personalisation and its implementation, exploring what personalisation is, where the idea came from and placing the transformation of adult social care in the wider public service reform agenda. Roger J. Stancliffe & Charlie Lakin (eds) Costs and outcomes of community services for people with intellectual disabilities Baltimore [MD]: Paul H. Brookes, 2004. - xxx, 346 p. ISBN 978-1-55766-718-2 Kirjan takakannesta: Cost and outcomes [...]-book includes original research with policy analysis, critical reviews of existing knowledge, and examples of cutting-edge programs and policies. The book helps readers, for axample policy makers, advocates, service providers, and researchers, make sound decisions about how to allocate resourses. Readers will examine differences in outcomes and costs among various community service models direct and indirect costs of care provided by the family the criteria used to allocate funds for community services 3
ways to develop a rational, equitable budgeting process that facilitates the desired lifestyle of each person the debate over independent budgets versus traditional funding costs and outcomes of consumer-directed, or self-determined, services the question of whether greater expenditures and more staff lead to better outcomes recommendations for future policy and practice Paul Cambridge & Steven Carnaby (eds) Person centred planning and care management with people with learning disabilities London: Jessica Kingsley Publishers, 2005. - 240 p. ISBN 978-1-84310-131-4 Kirjan takakannesta: Book provides a reflective analysis of person centred planning for people with learning disabilities, and supports the implementation of policies promoting social inclusion, individualisation, deinstitutionalisation and usercentred sevices. The contributors draw on practice and research to explore a range of related issues, including advocacy and empowerment risk management and adult protection inter-agency and inter-professional working communication ethnicity and culture deinstitutionalisation adult protection. Helpful case studies illustrate best practice in person centred planning and care management, and the outhors offer variety of ideas for increasing the participation, self-esteem and quality of life of people with learning disabilities through the development of person-centred appoaches. Kirjojen sisällysluettelot ovat Kevali-kokoelmassa kirjatietojen yhteydessä. Kevali-kokoelma: www.kehitysvammaliitto.fi/kirjasto/kevali Lainoja voi tiedustella osoitteesta kirjasto@kvl.fi 4
Artikkeleita aikakauslehdistä Artikkelien kokotekstitilaukset voi lähettää osoitteella kirjasto@kvl.fi Palveluhinnasto osoitteessa: www.kehitysvammaliitto.fi/kirjasto/palvelut/palveluhinnasto Kirjastossa vierailevat saavuttavat artikkelien kokotekstit lukusalin asiakaskoneelta Lehtiportaali: www.kehitysvammaliitto.fi/kirjasto/lehdet Scandinavian Journal of Disability Research, 2011, 13:1, 71 87 Irene Nordström Inclusion and participation in peer relations Abstract: The aim of the study was to compare interaction and relations between schoolchildren with intellectual disabilities and the same children s interaction/ relations with non-disabled peers. Study group: 24 children, 7 16 years, with intellectual disabilities. The children spent significantly more time in active participation in horizontal relation to peers with similar functional prerequisites as compared to active participation in vertical relations to children without intellectual disabilities. Together with age-mates with similar functional prerequisites each one contributes to common activity to about the same extent, they have similar everyday experiences and create a peer culture based on acceptance, shared norms and interests. Together with children with different functional prerequisites their influence on interaction conditions becomes extremely limited, and marginalization increases. Peer relations are subjectively experienced as deeply problematic; selfassessments as to peer relations are low-rated. Social exchanges in their own peer culture seem to be increasingly important. Data are discussed in terms of school inclusion, participation in peer-culture and self-perception. British Journal of Learning Disabilities BJLD, 2011, 39, 1, 5 10 Lucy Hoole & Sally Morgan It s only right that we get involved: service-user perspectives on involvement in learning disability services Summary: Promotion of service-user and carer involvement is part of the mainstream policy agenda in health and social care [Crit Soc Policy 25 (2005) 164]. Much effort has been invested into involving people with learning disabilities in decisions 5
regarding aspects of their lives through advocacy projects and the utilisation of person-centred planning approaches. However, people with learning disabilities continue to be a group of people who are the most excluded, least independent and most likely to lack control in every day life [Sociology of Health and Illness 30 (2008) 532]. This article describes a focus group that was conducted to explore the lived experiences of people with learning disabilities as users of services. Thematic analysis revealed three key themes: feelings of unfairness and inequality; experiences of inclusion and power; and future visions. Implications for practice are discussed. Ks. myös: BJLD 2011, 39, 1, pp 39-45 Steven Carnaby, Bron Roberts, Janet Land & Prue Nielsen: Flexible response: person-centred support and social inclusion for people with learning disabilities and challenging behavior Disability & society (DS) 2011, 26, 2, 207 222 Kathleen Mortier, Lore Desimpel, Elisabeth De Schauwer & Geert Van Hove I want support, not comments : children s perspectives on supports in their life Abstract: Even though supports are a major part of the daily lives of children with special educational needs who participate in general education schools, little attention has been paid to how children experience supports. Six children and their peers who were interviewed appreciated supports because they remove restrictions in activities due to the impairment. However, their experiences also show how these positive supports can have negative psycho-emotional repercussions, and are less focused on addressing disabling barriers. The children s accounts demonstrate the ambiguous and situated nature of supports, and the need for the children to be able to direct supports as chief partners in the inclusion process. Intellectual and developmental disabilities 2011, 49, 2, 86 102 Karrie A. Shogren & Ricky Broussard Exploring the Perceptions of Self-Determination of Individuals with Intellectual Disabilities Intellectual and Developmental Disabilities Abstract: Interviews were conducted with 17 individuals who had intellectual disability to expand our understanding of the impact of self-determination in their life. Themes 6
emerging from the interviews were grouped into three categories: meaning of self-determination, learning about self-determination, and dreams for the future. Participants described self-determination as being able to make choices and be in control of one s life and setting as well as being able to work toward goals and engage in advocacy. Participants discussed the importance of supports for expressing selfdetermination and identified environmental characteristics that promoted and inhibited self-determination. Overall, their perceptions confirm the importance of promoting personal development of skills and attitudes associated with selfdetermination and systems change to create environmental opportunities for self-determination and causal agency. Implications for future research and practice are discussed. Ks. myös: Intellectual and developmental disabilities 2011, 49, 2 Claudia Claes, Geert Van Hove, Stijn Vandevelde, Jos van Loon & Robert L. Schalock: Person-Centered Planning: Analysis of Research and Effectiveness Journal of Intellectual & Developmental Disability, March 2011; 36(1): 27 38 Patsie Frawley & Christine Bigby Inclusion in political and public life: The experiences of people with intellectual disability on government disability advisory bodies in Australia Abstract: Civil and political participation lies at the core of citizenship. Increasingly, people with intellectual disability are members of disability advisory bodies. This study investigated the political orientations of advisory body members with intellectual disability, their participatory experiences, and the types of support they received. Method: The 9 people with intellectual disability who in 2005 were members of disability advisory bodies at a state, national, and Victorian local government level were interviewed, together with 12 other members or secretariat staff of these bodies. Observations were also conducted of advisory body meetings. Results: The political perspective of members with intellectual disability varied, but all had a background in self-advocacy. They found the work hard but rewarding and encountered both practical and intangible obstacles to participation. Members received varying types of practical support, but a supportive collegial milieu was characteristic among members who felt most confident about their participation. 7
Conclusions: The milieu, structures, and processes of advisory bodies must all be adjusted to accommodate people with intellectual disability if they are to participate meaningfully. Ks. myös: Journal of Intellectual & Developmental Disability, March 2011; 36(1): 39 48 Jennifer Conder, Paul Milner & Brigit Mirfin-Veitch: Reflections on a participatory project: The rewards and challenges for the lead researchers Journal of Policy and Practice in Intellectual Disabilities, volume 7, Number 4, pp 245 249, December 2010 Virginie Cobigo, Yves Lachapelle & Diane Morin Choice-Making in Vocational Activities Planning: Recommendations from Job Coaches Abstract: Choice in the job seeking process may lead to increased satisfaction with the chosen job, and improve attention, performance, and motivation. Consequently, providing opportunities to express choices and interests while planning vocational activities is a key factor in achieving employment outcomes. Despite their commitment to promoting choice-making, service providers encounter important barriers to understanding the vocational interests of persons with intellectual disabilities who may have difficulty expressing their choices verbally. Methods of recording choices expressed through nonverbal means of communication are therefore needed. Such a method was designed and field-tested. Interviews were conducted with participating job coaches to assess its practical value and provide recommendations pertinent to its implementation and dissemination. This step is crucial to the knowledge-to-action process since it tailors research findings to make them meaningful to daily practice. The authors present results relevant to improving choicemaking opportunities in the job seeking and planning process of persons with intellectual disabilities. The results demonstrate the need for training to enable support staff to embed choice-making opportunities in the daily life of persons with intellectual disabilities. 8
Kehitysvammaliiton uusia julkaisuja Tarkemmat tiedot Kehitysvammaliiton julkaisuista Kevali-kokoelmasta: www.kehitysvammaliitto.fi/kirjasto/kevali Opike-kaupasta: www.opike.fi Suvi Vaarla (toim.) Alkoholin vaurioittamat: raskaudenaikaisen alkoholinkäytön vaikutukset lapsen elämään. Helsinki: Kehitysvammaliitto, 2011. - 236 s. ISBN 978-951-580-501-0 Kirjassa valotetaan raskaudenaikaisen alkoholinkäytön seurauksia lääketieteen, neuropsykologian, yhteiskuntatieteiden ja elämäkerrallisten tarinoiden näkökulmasta. Kirjaan ovat kirjoittaneet niin asiantuntijat kuin asianosaiset itse: alkoholia raskauden aikana juonut äiti ja alkoholista vaurioitunut nuori. Susan Eriksson Sikiöaikainen alkoholialtistus, moraali ja muuntuva asiantuntijuus Helsinki: Kehitysvammaliitto, 2011. 200 s. (Kehitysvammaliiton tutkimuksia 5) ISBN 978-951-580-502-7 Kirjassa tarkastellaan sikiöaikaisen alkoholivaurion saaneen lapsen asemaa sosiaali- ja terveydenhuollon ammatillisuudessa ja kysytään, onko raskaudenaikaista alkoholinkäyttöä koskevilla moraalikäsityksillä vaikutusta lapsen asemaan palvelujärjestelmässä. Heikki Seppälä & Markus Sundin Toimi: menetelmä psykososiaalisen toimintakyvyn kuvaamiseen Helsinki: Kehitysvammaliitto, 2011. - 35 s. ISBN 978-951-580-508-9 TOIMI on työväline vammaispalvelujen käyttäjän toimintakyvyn tarkasteluun. Sen avulla laaditaan laaja-alainen kuvaus vammaisen henkilön psykososiaalisen toimintakyvyn eri puolista ja tunnistetaan toimintakyvyn vahvuudet ja rajoitukset. 9
Muista myös Selkokielellä kirjoitettu Selkouutiset-lehti kuuluu Kevalikokoelmaan. Painetut lehdet sijaitsevat kirjaston lukusalissa. Selkouutiset on luettavissa myös osoitteessa www.papunet.net/selko/uutiset/nakoislehti Yhteystiedot Kehitysvammaliiton kirjasto Viljatie 4 A 00700 Helsinki p. (09) 3480 9256 (ke & to klo 12 16.30) kirjasto@kvl.fi www.kehitysvammaliitto.fi/kirjasto www.kehitysvammaliitto.fi/kirjasto/kevali