• Home
    • About
      • About the Journal
      • Editorial Team
      • Editorial Policies
      • Submissions
    • Contact
    • Content
      • Articles
      • Issue Archive
      • Special Collections
    • Research Integrity
    \

    Log in

    Don't have an account? Register Here
    Log in With ORCiD

    -------------- OR --------------
    You can reset your password here
    Register
    Start Submission

    Reading: Evaluating quality of support from the perspective of persons with intellectual disabilities...

    Share:

    Download

    • PDF (EN)
    • XML (EN)
    A- A+
    • View Harvard Citation Style
    • View Vancouver Citation Style
    • View APA Citation Style
    Alt. Display

    Review Articles

    Evaluating quality of support from the perspective of persons with intellectual disabilities: A review

    Author:

    Bea Maes

    University of Leuven, Centre for Disability Special Needs Education and Child Care Vesaliusstraat 2, 3000 Leuven, Belgium, BE
    About Bea
    Bea Maes is professor at the Centre for Disability, Special Needs Education and Child Care of the University of Leuven, Belgium. Current research topics are among others quality of life and quality of care, aging and intellectual disabilities, profound multiple disabilities and home-based support programs.
    X close

    Abstract

    Increasing importance is attached to the involvement and participation of persons with intellectual disabilities in planning and evaluating support and services. This can be explained by the changed relationship between clients and professionals and by the shift to a person‐centred approach of services that aims to provide responsive support to assist people in achieving valued ‘quality of life’ outcomes. Different strategies of quality evaluation from the perspective of persons with intellectual disabilities are discussed, including methodological issues concerning satisfaction research and the proxy‐approach. An overview is given of studies in which persons with intellectual disabilities were questioned about the quality of their life and supports. Specific attention is paid to the association of quality of life outcomes with type of service provision and support characteristics. Finally, some future challenges are indicated to promote user involvement in quality evaluation, from the perspective of researchers, service providers and persons with intellectual disabilities themselves.
    How to Cite: Maes, B., 2003. Evaluating quality of support from the perspective of persons with intellectual disabilities: A review. Scandinavian Journal of Disability Research, 5(3), pp.224–243. DOI: http://doi.org/10.1080/15017410309512627
    60
    Views
    28
    Downloads
    1
    Citations
      Published on 03 Jul 2003
    Peer Reviewed
     CC BY 4.0

    References

    1. Allen , P. (1995). . “‘From the bottom up: ensuring quality with service users’. ”. In Values and visions ‐changing ideas in services for people with learning difficulties. , Edited by: Philpot , T. and Ward , L.  : 164.–. [city: London]: : David Fulton. .  

    2. Amado , A.N. and McBride , M.W. (2002). . “Realizing individual, organizational, and systems change: lessons learned in 15 years of training about person‐centered planning and principles. ”. In Person‐centered planning. Research, practice and future directions. , Edited by: Holburn , S. and Vietze , P.M.  : 361.–. [city: Baltimore]: : P.H.Brookes. .  

    3. Antaki , C. and Rapley , M. (1996). . Questions and answers to psychological assessment schedules: hidden troubles in ‘Quality of life’ interviews. . Journal of Intellectual Disability Research , 40: : 421.–.  

    4. Antaki , C. , Young , N. and Finlay , M. (2002). . Shaping clients’ answers: departures from neutrality in care‐staff interviews with persons with a learning disability. . Disability and Society , 17: : 435.–.  

    5. Atkinson , M.J. and Zibin , S. (1996). . Quality of life measurement among persons with chronic mental illness: a critique of measures and methods. , [city: Ontario]: : Minister of Supply and Services Canada. . (http:/www.hcsc.gc.ca/hppb/mentalhealth/pubs/quality_of_life/). 

    6. Barnes , C. and Mercer , G. (1997). , eds. . Doing disability research. , [city: Leeds]: : The Disability Press. .  

    7. Becker , H. , Dumas , S. , Houser , A. and Seay , P. (2000). . How organizational factors contribute to innovations in service delivery. . Mental Retardation , 38: : 385.–.  

    8. Benjamin , M. , Capie , A. and Nossin , M. (1997). . Evaluating community services for people with a disability. , [city: Wellington]: : Standards and monitoring services. .  

    9. Bradley , V.J. (1994). . “Evolution of a new service paradigm. ”. In Creating individual supports for people with developmental disabilities: a mandate for change at many levels. , Edited by: Bradley , V.J. , Ashbaugh , J.W. and Blaney , B.C.  : 11.–. [city: Baltimore]: : Brookes. .  

    10. Butterworth , J. , Steere , D.E. and Whitney‐Thomas , J. (1997). . “Using person‐centered planning to address personal quality of life. ”. In Quality of life. Vol.11: Applications to persons with disabilities. , Edited by: Schalock , R.  Vol.11, : 5.–. [state: Washington]: : American Association on Mental Retardation. .  

    11. Capie , A. and Ahrens , M. (1996). . A strategie for training and involving consumers with an intellectual disability in the evaluation of their community services. . British Journal of Developmental Disabilities , 42: : 36. 

    12. Cowger , C. and Snively , C. (2002). . “Assessing client strengths: individual, family and community empowerment. ”. In The strengths perspective in social work practice. , Edited by: Saleebey , D.  : 106.–. [city: New York]: : Longman Publishers. .  

    13. Cummins , R.A. (1995). . On the trail of the gold standard for subjective well‐being. . Social Indicators Research , 35: : 179.–.  

    14. Cummins , R.A. (1997). . Comprehensive Quality of Life Scale. Manual: fourth edition. , [city: Melbourne], , Australia: : Deakin University. .  

    15. Dale , N. (1996). . Working with families of children with special needs: partnership and practice. , [city: London]: : Routledge. .  

    16. Davis , P. and Faw , G. (2002). . “Residential preferences in person‐centered planning: empowerment through the self‐identification of preferences and their availability. ”. In Person‐centered planning. Research, practice and future directions. , Edited by: Holburn , S. and Vietze , P.M.  : 203.–. [city: Baltimore]: : P.H.Brookes. .  

    17. Dean , J.E.A. and Mank , D.M. (1997). . “Continuous improvement and quality of life: Lessons from organizational management. ”. In Quality of life. Vol.II: Applications to persons with disabilities. , Edited by: Schalock , R.  Vol.II, : 165.–. [state: Washington]: : American Association on Mental Retardation. .  

    18. Dunst , C.J. , Trivette , C.M. and Johanson , C. (1995). . “Parent‐professional collaboration and partnerships. ”. In Supporting & strenghtening families. Volume 1: Methods, strategies and practices. , Edited by: Dunst , C.J. , Trivette , C.M. and Deal , A.G.  Volume 1, : 197.–. [city: Cambridge]: : Brookline Books. .  

    19. Emerson , E. (1999). . Residential supports for people with intellectual disabilities: questions and challenges from the UK. . Journal of Intellectual and Developmental Disability , 24: : 309.–.  

    20. Emerson , E. and Hatton , C. (1996). . Deinstitutionalization in the UK. Outcomes for sevice users. . Journal of Intellectual and Developmental Disabilities , 21: : 17.–.  

    21. Emerson , E. , Robertson , J. , Gregory , N. , Hatton , C. , Kessissoglou , S. , Hallam , A. , Knapp , M. , Järbrink , K. , Walsh , P.N. and Netten , A. (2000a). . Quality and costs of community‐based residential supports, village communities, and residential campuses in the United Kingdom. . American Journal on Mental Retardation , 105: : 81.–.  

    22. Emerson , E. , Robertson , J. , Gregory , N. , Kessissoglou , S. , Hatton , C. , Hallam , A. , Knapp , M. , Järbrink , K. , Netten , A. and Linehan , C. (2000b). . The quality and costs of community‐based residential supports and residential campuses for people with severe and complex disabilities. . Journal of Intellectual and Developmental Disability , 25: : 263.–.  

    23. Emerson , E. , Robertson , J. , Gregory , N. , Hatton , C. , Kessissoglou , S. , Hallam , A. , Jarbrink , K. , Knapp , M. , Netten , A. and Walsh , P.N. (2001). . Quality and costs of supported living residences and group homes in the United Kingdom. . American Journal on Mental Retardation , 106: : 401.–.  

    24. Felce , D. (1998). . The determinants of staff and resident activity in residential services for people with severe intellectual disability: moving beyond size, building design, location and number of staff. . Journal of Intellectual and Developmental Disability , 23: : 103.–.  

    25. Felce , D. , Jones , E. and Lowe , K. (2002). . “Active support: planning daily activities and support for people with severe mental retardation. ”. In Person‐centered planning. Research, practice and future directions. , Edited by: Holburn , S. and Vietze , P.M.  : 247.–. [city: Baltimore]: : P.H.Brookes. .  

    26. Felce , D. , Lowe , K. , Perry , J. , Baxter , H. , Jones , E. , Hallam , A. and Beecham , J. (1998). . Service support to people in Wales with severe intellectual disability and the most severe challenging behaviours: processes, outcomes and costs. . Journal of Intellectual Disability Research , 42: : 390.–.  

    27. Felce , D. , Lowe , K. , Beecham , J. and Hallam , A. (2000). . Exploring the relationships between costs and quality of services for adults with severe intellectual disabilities and the most severe challenging behaviours in Wales: a multivariate regression analysis. . Journal of Intellectual and Developmental Disability , 25: : 307.–.  

    28. Felce , D. and Perry , J. (1996). . “Exploring current conceptions of quality of life: A model for people with and without disabilities. ”. In Quality of life in health promotion and rehabilitation. Conceptual approaches, issues and applications. , Edited by: wick , R. Ren , Brown , I. and Nagler , M.  : 51.–. [city: London]: : Sage publications. .  

    29. Finlay , W.M.L. and Lyons , E. (2001). . Methodological issues in interviewing and using self‐report questionnaires with people with mental retardation. . Psychological Assessment , 13: : 319.–.  

    30. Forrester‐Jones , R. , Carpenter , J. , Cambridge , P. , Tate , A. , Hallam , A. , Knapp , M. and Beecham , J. (2002). . The quality of life of people 12 years after resettlement from long stay hospitals: users’ views on their living environment, daily activities and future aspirations. . Disability and Society , 17: : 741.–.  

    31. Gardner , J. , Carran , D.T. and Nudler , S. (2001). . “Measuring quality of life and quality of services through personal outcome measures: implications for public policy. ”. In International Review of Research in Mental Retardation. , Edited by: Glidden , L.M.  Vol.24, : 75.–. [city: San Diego]: : Academic Press. .  

    32. Goode , D. (1994). . Quality of life for persons with disabilities: international perspectives and issues. , [city: Cambridge]: : Brookline books. .  

    33. Goodley , D. (2000). . Self‐advocacy in the lives of people with learning difficulties — The politics of resilience. , [city: Buckingham]: : Open University Press. .  

    34. Gregory , N. , Robertson , J. , Kessissoglou , S. , Emerson , E. and Hatton , C. (2001). . Factors associated with expressed satisfaction among people with intellectual disability receiving residential supports. . Journal of Intellectual Disability Research , 45: : 279.–.  

    35. Griffin , D.K. , Rosenberg , H. , Cheyney , W. and Greenberg , B. (1996). . A comparison of self‐esteem and job satisfaction of adults with mild mental retardation in sheltered workshops and supported employment. . Education and Training in Mental Retardation and Developmental Disability , 31: : 142.–.  

    36. Hatton , C. (1998). . Whose quality of life is it anyway? Some problems with the emerging quality of life consensus. . Mental Retardation , 36: : 104.–.  

    37. Hatton , C. and Ager , A. (2002). . Quality of life measurement and people with intellectual disabilities: a reply to Cummins. . Journal of Applied Research in Intellectual Disabilities , 15: : 254.–.  

    38. Hatton , C. , Emerson , E. , Robertson , J. , Henderson , D. and Cooper , J. (1996). . Factors associated with staff support and user lifestyle in services for people with multiple disabilities: a path analytic approach. . Journal of Intellectual Disability Research , 40: : 466.–.  

    39. Heal , L.W. and Sigelman , C.K. (1996). . “Methodological issues in quality of life measurement. ”. In Quality of life. Vol.1: Conceptualization and measurement. , Edited by: Schalock , R.L.  Vol.1, : 91.–. [state: Washington]: : American Association on Mental Retardation. .  

    40. Heller , T. , Miller , A.B. and Hsieh , K. (2002). . Eight‐year follow‐up of the impact of environmental characteristics on well‐being of adults with developmental disabilities. . Mental Retardation , 40: : 366.–.  

    41. Hensel , E. , Rose , J. , Steinfert Kroese , B. and Banks‐Smith , J. (2002). . Subjective judgements of quality of life: a comparison study between people with and those without a disability. . Journal of Intellectual Disability Research , 46: : 95.–.  

    42. Hogg , J. , Reeves , D. , Roberts , J. and Mudford , O.C. (2001). . Consistency, context and confidence in judgements of affective communication in adults with profound intellectual and multiple disabilities. . Journal of Intellectual Disability Research , 45: : 18.–.  

    43. Holburn , S. and Vietze , P.M. (2002). , eds. . Person‐centered planning. Research, practice and future directions. , [city: Baltimore]: : P.H. Brookes. .  

    44. Howe , J. , Horner , R.H. and Newton , J.S. (1998). . Comparison of supported living and traditional residential services in the state of Oregon. . Mental Retardation , 36: : 1.–.  

    45. Keith , K.D. (2001). . “International quality of life: current conceptual, measurement, and implementation issues. ”. In International Review of Research in Mental Retardation. , Edited by: Glidden , L.M.  Vol.24, : 49.–. [city: San Diego]: : Academic Press. .  

    46. Kim , S. , Larson , S. and Lakin , K. (2001). . Behavioral outcomes of deinstitutionalization for people with intellectual disabilities: a review of U.S. studies conducted between 1980 and 1999. . Journal of Intellectual and Developmental Disabilities , 26: : 15.–.  

    47. Larsson , G. and Larsson , B.W. (2001). . Quality of care and service as perceived by adults with developmental disabilities, their parents, and primary caregivers. . Mental Retardation , 39: : 249.–.  

    48. Lord , J. and Hutchison , P. (2003). . Indiviualised support and funding: building blocks for capacity building and inclusion. . Disability and Society , 18: : 71.–.  

    49. Luckasson , R.A. , Coulter , D.L. , Polloway , E.A. , Reiss , S. , Schalock , R.L. , Snell , M.E. , Spitalnik , D.M. and Stark , J.A. (1992). . Mental Retardation: definition, classification, and systems of support. , [state: Washington]: : American Association on Mental Retardation. .  

    50. Maes , B. , Bruyninckx , W. and Goffart , K. (2003). . Trajectbegeleiding voor personal met een handicap [Support brokerage for persons with a disability]. , [city: Leuven]: : Acco. .  

    51. Maes , B. , Geeraert , L. and Van den Bruel , B. (2000). . Developing a model for quality evaluation in residential care for people with intellectual disabilities. . Journal of Intellectual Disability Research , 44: : 544.–.  

    52. Maes , B. , Petry , K. and Demuynck , J. (2003). Expression of feelings and preferences by persons with profound multiple disabilities. . Presentation at the Meeting of the IASSID‐Special Interest Group ‘Persons with profound multiple disabilities’. . March2003, , [city: Amsterdam].  

    53. Maes , B. , Van Hove , G. , Van Puyenbroeck , J. , Van der Veken , K. , Van Driessche , C. and Boone , M. (2001). . Een kader voor de organisatie van vraaggestuurde ondersteuning voor mensen met een handicap en hun omgeving [A framework for the organisation of person‐centered support for persons with a disability and their family]. , [city: Leuven/Gent]: : University of Leuven/University of Gent, Department of orthopedagogics. .  

    54. McVilly , K.R. , Burton‐Smith , R.M. and Davidson , J.A. (2000). . Concurrence between subject and proxy ratings of quality of life for people with and without intellectual disabilities. . Journal of Intellectual and Developmental Disabilities , 25: : 19.–.  

    55. Neumayer , R. and Bleasdale , M. (1996). . Personal lifestyle preferences of people with an intellectual disability. . Journal of Intellectual and Developmental Disability , 21: : 91.–.  

    56. Newton , J.S. , Horner , R.H. , Ard , W.R. , LeBaron , N. and Sappington , G. (1994). . A conceptual model for improving the social life of individuals with mental retardation. . Mental Retardation , 32: : 392.–.  

    57. O'Brien , C.L. and O'Brien , J. (2002). . “The origins of person‐centered planning ‐ A community of practice perspective. ”. In Person‐centered planning. Research, practice and future directions. , Edited by: Holburn , S. and Vietze , P.M.  : 3.–. [city: Baltimore]: : P.H.Brookes. .  

    58. Pedlar , A. , Haworth , L. and Hutchison , P. (1999). . A textured life: empowerment and adults with developmental disabilities. , [city: Waterloo]: : Wilfrid Laurier University Press. .  

    59. Perry , J. and Felce , D. (2002). . Subjective and objective quality of life assessment: responsiveness, response bias, and resident:proxy concordance. . Mental Retardation , 40: : 445.–.  

    60. Reid , D.H. and Green , C.W. (2002). . “Person‐centered planning with people who have severe multiple disabilities: validated practices and misapplications. ”. In Person‐centered planning. Research, practice and future directions. , Edited by: Holburn , S. and Vietze , P.M.  : 183.–. [city: Baltimore]: : P.H.Brookes. .  

    61. Renwick , R. and Brown , I. (1996). . “The Centre for Health Promotion's conceptual approach to quality of life: being, belonging and becoming. ”. In Quality of life in health promotion and rehabilitation. Conceptual approaches, issues and applications. , Edited by: Renwick , R. , Brown , I. and Nagler , M.  : 75.–. [city: London]: : Sage publications. .  

    62. Robertson , J. , Emerson , E. , Gregory , N. , Hatton , C. , Kessissoglou , S. , Hallam , A. and Linehan , C. (2001). . Social networks of people with mental retardation in residential settings. . Mental Retardation , 39: : 201.–.  

    63. Sands , D.G. and Kozleski , E.B. (1994). . Quality of life differences between adults with and without disabilities. . Education and Training in Mental Retardation and Developmental Disabilities , 29: : 90.–.  

    64. Sands , D.J. , Kozleski , E.B. and Goodwin , L.D. (1991). . Whose needs are we meeting? Results of a consumer satisfaction survey of persons with developmental disabilities in Colorado. . Research in Developmental Disabilities , 12: : 297.–.  

    65. Schalock , R.L. (1996a). . “Quality of life and quality assurance. ”. In Quality of life in health promotion and rehabilitation. Conceptual approaches, issues and applications. , Edited by: Renwick , R. , Brown , I. and Nagler , M.  : 104.–. [city: London]: : Sage publications. .  

    66. Schalock , R.L. (1996b). . “Reconsidering the conceptualization and measurement of quality of life. ”. In Quality of Life. Vol.1. Conceptualization and measurement. , Edited by: Schalock , R.L.  Vol.1, : 123.–. [state: Washington]: : American Association on Mental Retardation. .  

    67. Schalock , R.L. , Brown , I. , Brown , R. , Cummins , R.A. , Felce , D. , Matikka , L. , Keith , D.K. and Parmenter , T. (2002). . Conceptualization, measurement, and application of quality of life for persons with intellectual disabilities: report of an international panel of experts. . Mental Retardation , 40: : 457.–.  

    68. Schwartz , A.A. , Jacobson , J.W. and Holburn , S.C. (2000). . Defining person centeredness: results of a two consensus methods. . Education and Training in Mental Retardation and Developmental Disabilities , 35: : 235.–.  

    69. Stalker , K. and Harris , P. (1998). . The exercise of choice by adults with intellectual disabilities: a literature review. . Journal of Applied Research in Intellectual Disabilities , 11: : 60.–.  

    70. Stancliffe , R.J. (1997). . Community‐living‐unit size, staff presence and resident's choice‐making. . Mental Retardation , 35: : 1.–.  

    71. Stancliffe , R.J. (2000). . Proxy respondents and quality of life. . Evaluation and Program Planning , 23: : 89.–.  

    72. Stancliffe , R.J. , Abery , B.H. and Smith , J. (2000). . Personal control and the ecology of community living settings: beyond living‐unit size and type. . American Journal on Mental Retardation , 105: : 431.–.  

    73. Stancliffe , R.J. and Keane , S. (2000). . Outcomes and costs of community living: a matched comparison of group homes and semi‐independent living. . Journal of Intellectual and Developmental Disability , 25: : 281.–.  

    74. Stancliffe , R.J. and Lakin , K.C. (1998). . Analysis of expenditures and outcomes of residential alternatives for persons with developmental disabilities. . American Journal on Mental Retardation , 102: : 552.–.  

    75. Taylor , S.J. , Bogdan , R. and Racino , J.A. (1991). , eds. . The community participation series: Vol.1 Life in the community: case studies of organizations supporting people with disabilities. , Vol.1, [city: Baltimore]: : P.H. Brookes. .  

    76. Tøssebro , J. (1995). . Impact of size revisited: relation of number of residents to self‐determination and deprivatization. . American Journal on Mental Retardation , 100: : 59.–.  

    77. Vlaskamp , C. (1993). . Een kwestie van perspectief Methodiekontwikkeling in de zorg voor ernstig meervoudig gehandicapten [A matter of perspective. Development of a method in the care for persons with profound multiple disabilities]. , [city: Assen]: : Van Gorcum. .  

    78. Walmsley , J. (2001). . Normalisation, emancipatory research and inclusive research in learning disability. . Disability and Society , 16: : 187.–.  

    79. Ward , L. (1998). , ed. . Innovations in advocacy and empowerment for people with intellectual disabilities. , [city: Chorley]: : Lisieux Hall. .  

    80. Wheeler , J.J. (1996). . The use of interactive focus groups to aid in the identification of perceived service and support delivery needs of persons with developmental disabilities and their families. . Education and Training in Mental Retardation and Developmental Disabilities , 31: : 294.–.  

    81. Wehmeyer , M.L. and Metzler , C.A. (1995). . How self‐determinated are people with mental retardation? The national consumer survey. . Mental Retardation , 33: : 111.–.  

    82. Wehmeyer , M.L. and Bolding , N. (2001). . Enhanced self‐determination of adults with intellectual disability as an outcome of moving to community‐based work or living environments. . Journal of Intellectual Disability Research , 45: : 371.–.  

    83. Whittaker , A. (1995). . “Partnership in practice: user participation in services for people with learning difficulties. ”. In Values and visions ‐ changing ideas in services for people with learning difficulties. , Edited by: Philpot , T. and Ward , L.  : 176.–. [city: London]: : David Fulton. .  

    84. Young , I. , Sigafoos , J. , Suttie , J. , Ashman , A. and Grevell , P. (1998). . Deinstitutionalization of persons with intellectual disabilities: a review of Australian studies. . Journal of Intellectual and Developmental Disabilities , 23: : 155.–.  

    85. Zirpoli , T.J. , Wieck , C. , Hancox , D. and Skarnulis , E.R. (1994). . Partners in policy‐making. The first five years. . Mental Retardation , 32: : 422.–.  

    Maes, B., 2003. Evaluating quality of support from the perspective of persons with intellectual disabilities: A review. Scandinavian Journal of Disability Research, 5(3), pp.224–243. DOI: http://doi.org/10.1080/15017410309512627

    Maes B. Evaluating quality of support from the perspective of persons with intellectual disabilities: A review. Scandinavian Journal of Disability Research. 2003;5(3):224–43. DOI: http://doi.org/10.1080/15017410309512627

    Maes, B. (2003). Evaluating quality of support from the perspective of persons with intellectual disabilities: A review. Scandinavian Journal of Disability Research, 5(3), 224–243. DOI: http://doi.org/10.1080/15017410309512627

    Maes B, ‘Evaluating Quality of Support from the Perspective of Persons with Intellectual Disabilities: A Review’ (2003) 5 Scandinavian Journal of Disability Research 224 DOI: http://doi.org/10.1080/15017410309512627

    Maes, Bea. 2003. “Evaluating Quality of Support from the Perspective of Persons with Intellectual Disabilities: A Review”. Scandinavian Journal of Disability Research 5 (3): 224–43. DOI: http://doi.org/10.1080/15017410309512627

    Maes, Bea. “Evaluating Quality of Support from the Perspective of Persons with Intellectual Disabilities: A Review”. Scandinavian Journal of Disability Research 5, no. 3 (2003): 224–43. DOI: http://doi.org/10.1080/15017410309512627

    Maes, B.. “Evaluating Quality of Support from the Perspective of Persons with Intellectual Disabilities: A Review”. Scandinavian Journal of Disability Research, vol. 5, no. 3, 2003, pp. 224–43. DOI: http://doi.org/10.1080/15017410309512627

    Jump to Discussions
    comments powered by Disqus
    • E-ISSN: 1745-3011
    • Published by Stockholm University Press
    • Terms and Conditions
    • Privacy Policy