Outcomes and costs of skilled support for people with severe or profound intellectual disability and complex needs.

complex needs costs outcomes quality of life severe and profound intellectual disability skilled support

Journal

Journal of applied research in intellectual disabilities : JARID
ISSN: 1468-3148
Titre abrégé: J Appl Res Intellect Disabil
Pays: England
ID NLM: 9613616

Informations de publication

Date de publication:
Jan 2021
Historique:
received: 03 08 2017
revised: 14 01 2019
accepted: 23 06 2020
pubmed: 6 8 2020
medline: 19 8 2021
entrez: 6 8 2020
Statut: ppublish

Résumé

With increasing reductions in funding for social care across many countries, the need to ensure that resources are used to best effect is becoming increasingly important, in particular for those with severe and complex needs. In order to explore the outcomes and costs of skilled support for this group of people, quality of life was assessed for 110 people in 35 services in England. Information on costs was also collected. People who received consistently good active support experienced better outcomes in terms of several quality of life domains. Good support did not require significantly more staff time, and there was no evidence of higher total costs for those receiving good support. The inclusion of active support in government guidance and local commissioning practices related to people with severe intellectual disabilities is likely to improve user outcomes. Observation should be an important element in measuring service quality.

Sections du résumé

BACKGROUND BACKGROUND
With increasing reductions in funding for social care across many countries, the need to ensure that resources are used to best effect is becoming increasingly important, in particular for those with severe and complex needs.
METHODS METHODS
In order to explore the outcomes and costs of skilled support for this group of people, quality of life was assessed for 110 people in 35 services in England. Information on costs was also collected.
RESULTS RESULTS
People who received consistently good active support experienced better outcomes in terms of several quality of life domains. Good support did not require significantly more staff time, and there was no evidence of higher total costs for those receiving good support.
CONCLUSIONS CONCLUSIONS
The inclusion of active support in government guidance and local commissioning practices related to people with severe intellectual disabilities is likely to improve user outcomes. Observation should be an important element in measuring service quality.

Identifiants

pubmed: 32755061
doi: 10.1111/jar.12782
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

42-54

Subventions

Organisme : NIHR School for Social Care Research

Informations de copyright

© 2020 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.

Références

Aman, M. G., Singh, N. N., Stewart, A. W., & Field, C. J. (1985). The aberrant behavior checklist: A behavior rating scale for the assessment of treatment effects. American Journal of Mental Deficiency, 89(5), 485-491.
Beadle-Brown, J., Bigby, C., & Bould, E. (2015). Observing practice leadership in intellectual and developmental disability services. Journal of Intellectual Disability Research, 59(12), 1081-1093. https://doi.org/10.1111/jir.12208
Beadle-Brown, J., Hutchinson, A., & Whelton, B. (2012). Person-centred active support - Increasing choice, promoting independence and reducing challenging behaviour. Journal of Applied Research in Intellectual Disabilities, 25(4), 291-307. https://doi.org/10.1111/j.1468-3148.2011.00666.x
Beadle-Brown, J., Leigh, J., Whelton, B., Richardson, L., Beecham, J., Baumker, T., & Bradshaw, J. (2016). Quality of life and quality of support for people with severe intellectual disability and complex needs. Journal of Applied Research in Intellectual Disabilities, 29(5), 409-421. https://doi.org/10.1111/jar.12200
Beecham, J. & Knapp, M. (1992) Costing psychiatric interventions. InC.R. Thornicroft, Brewin & J. Wing (Eds) Measuring Mental Health Needs, pp. 163-183. London, UK: Gaskell.
Beadle-Brown, J., Mansell, J., Ashman, B., Ockenden, J., Iles, R., & Whelton, B. (2014). Practice leadership and active support in residential services for people with intellectual disabilities: An exploratory study. Journal of Intellectual Disability Research, 58(9), 838-850. https://doi.org/10.1111/jir.12099
Beecham, J. (1995). Collecting and estimating costs. In M. Knapp (Ed.), The economic evaluation of mental health care. Aldershot Arena: Ashgate Publishing Ltd., Second edition 2001.
Bellamy, G. T., Newton, J. S., LeBaron, N. M., & Horner, R. H. (1990). Quality of life and lifestyle outcome: A challenge for residential programs. In R. L. Schalock & M. J. Begab (Eds.), Quality of life: Perspectives and issues (pp. 127-137). Washington, DC: American Association on Mental Retardation.
Bigby, C., & Beadle-Brown, J. (2018). Improving quality of life outcomes in supported accommodation for people with intellectual disability: What makes a difference? Journal of Applied Research in Intellectual Disability, 31, e182-e200. https://doi.org/10.1111/jar.12291
Briggs, A., Wonderling, D. E., & Mooney, C. Z. (1997). Pulling cost-effectiveness up by its bootstraps: A non-parametric approach to confidence interval estimation. Health Economics, 6, 327-340.
British Broadcasting Corporation. (2011). Undercover care: The abuse exposed Panorama. London, UK: Author.
Care Quality Commission. (2016). The state of health care and adult social care in England 2015/16. London, UK: Author.
Carter, R. (2015). Coming face-to-face with the impact of social care cuts you’ve made: A director’s story. In Community Care http://www.communitycare.co.uk/2016/05/11/coming-face-face-impact-social-care-cuts-youve-made-directors-story/
Conroy, J. W., & Feinstein, C. S. (1986). The choice-making scale. Philadelphia, PA: Conroy and Feinstein Associates.
Curtis, L. (2011). Unit Costs of Health and Social Care, PSSRU.Canterbury, UK: University of Kent.
Department of Health. (2012a). DH Winterbourne View Review Concordat: Programme of Action. Retrieved from www.gov.uk/government/uploads/system/uploads/attachment_data/file/213217/Concordat.pdf.
Department of Health. (2012b). Transforming care: A national response to Winterbourne View Hospital. Department of Health Review: Final Report. Retrieved from www.gov.uk/government/uploads/system/uploads/attachment_data/file/213215/final-report.pdf
Department of Health. (2012c). Winterbourne View: Summary of the Government Response. Retrieved fromwww.nhs.uk/CarersDirect/guide/practicalsupport/Documents/Winterbourne%20View%20Summary%20Document%20final%2010.12.12.pdf
Deveau, R., & McGill, P. (2016). Practice leadership at the front line in supporting people with intellectual disabilities and challenging behaviour: A qualitative study of registered managers of community-based, staffed group homes. Journal of Applied Research in Intellectual Disabilities, 29(3), 266-277. https://doi.org/10.1111/jar.12178
Drummond, M., O’Brien, B., Stoddart, G. L., & Torrance, G. (1997). Methods for the economic evaluation of health care programmes, 2nd ed. Oxford, UK: Oxford Medical Publications.
Emerson, E. (2012). A review of the results of the 2011/12 Focused CQC Inspection of Services for People with Learning Disabilities. Improving Health and Lives: Learning Disability Observatory. https://www.ndti.org.uk/uploads/files/IHAL2012-05_CQCLDreview.pdf
Felce, D., de Kock, U., Thomas, M., & Saxby, H. (1986). Change in adaptive behaviour of severely and profoundly mentally handicapped adults in different residential settings. British Journal of Psychology, 77(1986), 489-501.
Flynn, M. (2012). South Gloucestershire Safeguarding Adults Board Winterbourne View Hospital: A Serious Case Review. South Gloucestershire council. Retrieved from http://hosted.southglos.gov.uk/wv/report.pdf
Hatton, C. (2016). Specialist inpatient services for people with learning disabilities across the four countries of the UK. Tizard Learning Disability Review, 21(4), 220-225. https://doi.org/10.1108/TLDR-08-2016-0023
Hatton, C. (2017). Living arrangements of adults with learning disabilities across the UK. Tizard Learning Disability Review, 22(1), 43-50. https://doi.org/10.1108/TLDR-11-2016-0040
Hatton, C., Emerson, E., Robertson, J., Gregory, N., Kessissoglou, S., Perry, J., … Linehan, C. (2001). The adaptive behavior scale-residential and community (part I): Towards the development of a short form. Research in Developmental Disabilities, 22(4), 273-288. https://doi.org/10.1016/S0891-4222(01)00072-5
Health and Social Care Information Centre. (2016) Mental Health Services Monthly Statistics Final September, Provisional October 2016. Experimental Published 22nd December 2016. Retrieved from http://www.content.digital.nhs.uk/catalogue/PUB22841/mhsds-monthly-exec-sep-oct-2016.pdf
Jones, E., Felce, D., Lowe, K., Bowley, C., Pagler, J., Gallagher, B., & Roper, A. (2001). Evaluation of the dissemination of active support training in staffed community residences. American Journal on Mental Retardation, 106(4), 344-358. https://doi.org/10.1352/0895-8017(2001)106<0344:EOTDOA>2.0.CO;2
Koritsas, S., Iacono, T., Hamilton, D., & Leighton, D. (2008). The effect of active support training on engagement, opportunities for choice, challenging behaviour and support needs. Journal of Intellectual & Developmental Disability, 33, 247-256. https://doi.org/10.1080/13668250802282944
Local Government Association, Directors of Adult Social Services & NHS England. (2015). Building the right support. Retrieved from https://www.england.nhs.uk/wp-content/uploads/2015/10/ld-nat-imp-plan-oct15.pdf
Mansell, J., (2011). Structured observational research in services for people with learning disabilities. SSCR methods review, 10. NIHR School for Social Care Research. London, UK. http://eprints.lse.ac.uk/43159/
Mansell, J., & Beadle-Brown, J. (2005). Engagement in meaningful activity and relationships: An observational measure. Canterbury, UK: Tizard Centre.
Mansell, J., & Beadle-Brown, J. (2011). Estimating activity duration by momentary time-sampling of part or all of the day. Journal of Applied Research in Intellectual Disabilities, 24, 489-494. https://doi.org/10.1111/j.1468-3148.2011.00629.x
Mansell, J., & Beadle-Brown, J. (2012). Active support: Enabling and empowering people with intellectual disabilities. London, UK: Jessica Kingsley.
Mansell, J., Beadle-Brown, J., Whelton, R., Beckett, C., & Hutchinson, A. (2008). Effect of service structure and organisation on staff care practices in small community homes for people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 21, 398-413.
Mansell, J., & Elliott, T. E. (1996). Active Support Measure. Canterbury, UK: Tizard Centre.
Mansell, J., Elliott, T. E., & Beadle-Brown, J. (2005). Active Support Measure (Revised). Canterbury, UK: Tizard Centre.
Mansell, J., Elliott, T., Beadle-Brown, J., Ashman, B., & Macdonald, S. (2002b). Engagement in meaningful activity and ‘active support’ of people with intellectual disabilities in residential care. Research in Developmental Disabilities, 23(5), 342-352. https://doi.org/10.1016/S0891-4222(02)00135-X
Mansell, J., Felce, D., Jenkins, J., de Kock, U., & Toogood, A. (1987). Developing staffed housing for people with mental handicaps. Costello: Tunbridge Wells.
Mansell, J., McGill, P., & Emerson, E. (2001). Development and evaluation of innovative residential services for people with severe intellectual disability and serious challenging behaviour. In L. M. Glidden (Ed.), International review of research in mental retardation, Vol. 24 (pp. 245-298). New York, NY: Academic Press.
Mooney, C. Z., & Duval, R. D. (1993). Bootstrapping: A nonparametric approach to statistical inference. Newbury Park, CA: Sage.
National Audit Office. (2015) Care services for people with learning disabilities and challenging behaviour. Retrieved from https://www.nao.org.uk/wp-content/uploads/2015/02/Care-services-for-people-with-learning-disabilities-and-challenging-behaviour.pdf
Netten, A., Beadle-Brown, J., Trukeschitz, B., Towers, A., Welch, E., Forder, J., … Alden, E. (2010). Measuring the outcomes of care homes: Final report. Canterbury, UK: Personal Social Services Research Unit, University of Kent.
NHS England, Local Government Association & the Association for Directors of Adult Social Services. (2015a). Building the right support. A national plan to develop community services and close inpatient facilities for people with a learning disability and/or autism who display behaviour that challenges, including those with a mental health condition. Retrieved from https://www.england.nhs.uk/wp-content/uploads/2015/10/ld-nat-imp-plan-oct15.pdf
NHS England, Local Government Association & the Association for Directors of Adult Social Services. (2015b). Supporting people with a learning disability and/or autism who display behaviour that challenges, including those with a mental health condition. Retrieved from https://www.england.nhs.uk/wp-content/uploads/2015/07/ld-draft-serv-mod.pdf
Nihira, K., Leland, H., & Lambert, N. (1993). AAMR Adaptive Behavior Scale - Residential and community, 2nd ed. Austin, TX: Pro-Ed.
Raynes, N. V., Sumpton, R. C., & Pettipher, C. (1989). Index of community involvement. Manchester, UK: Hester Adrian Research Centre.
Raynes, N. V., Wright, K., Shiell, A., & Pettipher, C. (1994). The cost and quality of community residential care. London, UK: Fulton.
Risley, T. R. (1996). Get a life! Positive behavioral intervention for challenging behaviour through life arrangement and life coaching. In L. K. Koegel, R. L. Koegel, & G. Dunlap (Eds.), Positive behavioral support: Including people with difficult behavior in the community (pp. 425-437). Baltimore, MD: Brookes.
Saunders, R. R., & Spradlin, J. E. (1991). A supported routines approach to active treatment for enhancing independence, competence and self-worth. Behavioral Residential Treatment, 6, 11-37. https://doi.org/10.1002/bin.2360060103
Schalock, R. L., & Verdugo, M. A. (2002). Handbook on quality of life for human service practitioners. Washington, DC: American Association on Mental Retardation.
Šiška, J., Beadle-Brown, J., Káňová, Š., & Jan Tøssebro, T. (2017). Active citizenship and community living in Europe - current policy, practice and research. In Halvorson, Rune and Hvinden, Bjorn and Bickenback, Jerome and Derri, Delia and Rodrigues, Ana Marta Guillen (Eds.), The Changing Disability Policy System: Active Citizenship and Disability in Europe, Vol. 1 chapter 5. Abingdon, UK: Routledge Press.
Stancliffe, R. J., Harman, A., Toogood, S., & McVilly, K. R. (2007). Australian implementation and evaluation of active support. Journal of Applied Research in Intellectual Disabilities, 20(3), 211-227. https://doi.org/10.1111/j.1468-3148.2006.00319.x
Stancliffe, R., Jones, E., Mansell, J., & Lowe, K. (2008). Active support: A critical review and commentary. Journal of intellectual & developmental disability, 33, 196-214. https://doi.org/10.1080/13668250802315397.
Stancliffe, R. J., McVilly, K. R., Radler, G., Mountford, L., & Tomaszewski, P. (2010). Active support, participation and depression. Journal of Applied Research in Intellectual Disabilities, 23, 312-321. https://doi.org/10.1111/j.1468-3148.2009.00535.x
Tøssebro, J., Bonfils, I. S., Teittinen, A., Tideman, M., Traustadóttir, R., & Vesala, H. T. (2012). Normalization fifty years beyond-Current trends in the Nordic countries. Journal of Policy and Practice in Intellectual Disabilities, 9(2), 134-146. https://doi.org/10.1111/j.1741-1130.2012.00340.x
Transforming Care and Commissioning Steering Group (2014) Winterbourne View - Time for change: Transforming the commissioning of services for people with learning disabilities and/or autism. https://www.england.nhs.uk/wp-content/uploads/2014/11/transforming-commissioning-services.pdf
UN General Assembly. (2006) Convention on the Rights of Persons with Disabilities, A/RES/61/106, Annex I, available at:https://www.refworld.org/docid/4680cd212.html. Accessed 14 July 2020.
Welsh Centre for Learning Disabilities, Institute for Health Research and Centre for the Economics of Mental Health. (2003). Revised Residential Services Setting Questionnaire. Cardiff, UK: Welsh Centre for Learning Disabilities.
Wing, L., & Gould, J. (1978). Systematic recording of behaviors and skills of retarded and psychotic children. Journal of Autism and Childhood Schizophrenia, 8(1), 79-97. https://doi.org/10.1007/BF01550280

Auteurs

Julie Beadle-Brown (J)

Tizard Centre, University of Kent, Canterbury, UK.
Living with Disability Research Centre, La Trobe University, Melbourne, Vic., Australia.

Jennifer Beecham (J)

PSSRU, University of Kent, Canterbury, UK.
London School of Economics and Political Science, London, UK.

Jennifer Leigh (J)

Tizard Centre, University of Kent, Canterbury, UK.

Rebecca Whelton (R)

Tizard Centre, University of Kent, Canterbury, UK.

Lisa Richardson (L)

Tizard Centre, University of Kent, Canterbury, UK.

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