Abstract
Current research findings are summarized and best professional practices are described in relation to support needs assessment and planning with people with intellectual disability and related developmental disabilities (ID/DD) in community settings. The current interest in support needs assessment, planning, and arranging individualized supports with people with ID/DD is considered in light of changes in public policy, trends in service delivery systems, and new understandings of disability that have emerged during the past four decades. The logic underlying person-centered planning (PCP) processes is reviewed. Several leading PCP processes are described and research findings related to their efficacy are summarized. Support needs assessment scales that have been developed and published over the past 20 years are also described. Research findings reported in peer-reviewed, professional literature on the scales are synthesized. Special attention is paid to the psychometric properties and factor structure of support needs assessment scales. An approach to how planning teams can use information from support needs assessment scales to inform decision-making is discussed.
Access this chapter
Tax calculation will be finalised at checkout
Purchases are for personal use only
References
American Association on Intellectual and Developmental Disabilities (AAIDD). (2013). International SIS use. Retrieved from http://aaidd.org/sis/international#.U7xABqhCaW4
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: American Psychiatric Publishing.
Arnold, S. R. C., Riches, V. C., & Stancliffe, R. J. (2014). I-CAN: The classification and prediction of support needs. Journal of Applied Research in Intellectual Disabilities, 27, 97–111.
Boeltzig, H., Timmons, J. C., & Butterworth, J. (2008). Entering work: Employment outcomes of people with developmental disabilities. International Journal of Rehabilitation Research, 31, 217–223.
Bossaert, G., Kuppens, S., Buntinx, W., Molleman, C., Van den Abeele, A., & Moes, B. (2009). Usefulness of the Supports Intensity Scale (SIS) for persons with other than intellectual disabilities. Research in Developmental Disabilities, 30, 1306–1316.
Braddock, D., Hemp., R., Rizzolo, M. C., Tanis, E. S., Haffer, L., Lulinski, A., & Wu, J. (2013). State of the States in developmental disabilities 2013. Washington, DC: American Association on Intellectual and Developmental Disabilities.
Brown, H. K., Ouellette-Kuntz, H., Bielska, I., & Elliott, D. (2009). Choosing a measure of support need: Implications for research and policy. Journal of Intellectual Disability Research, 53, 949–954.
Bruininks, R. H., Meyers, C. E., Sigford, B. B., & Lakin, K. C. (1981). Deinstitutionalization and community adjustment of mentally retarded people. Washington, DC: American Association on Mental Deficiency.
Butterworth, J., Steere, D. E., & Whitney-Thomas, J. (1997). Using person-centered planning to address personal quality of life. In R. L. Schalock (Ed.), Quality of life (volume 2) (pp. 5–24). Washington, DC: American Association on Mental Retardation.
Chou, Y. C., Lee, Y. C., & Chang, S. C. (2013). Evaluating the Supports Intensity Scale as a potential assessment instrument for resource allocation for persons with intellectual disability. Research in Developmental Disabilities: A Multidisciplinary Journal, 34, 2056–2063.
Cicchetti, D. V., & Sparrow, S. S. (1981). Developing criteria for establishing interrater reliability of specific items: Applications to assessment of adaptive behavior. American Journal of Mental Deficiency, 86, 127–137.
Claes, C., Van Hove, G., van Loon, J., Vandevelde, S., & Schalock, R. L. (2009). Evaluating the inter-respondent (consumer vs. staff) reliability and construct validity (SIS vs. Vineland) of the Supports Intensity Scale on a Dutch sample. Journal of Intellectual Disability Research, 53, 329–338.
Claes, C., Van Hove, G., Vandelvelde, S., van Loon, J., & Schalock, R. (2012). The influence of support strategies, environmental factors, and client characteristics on quality of life-related personal outcomes. Research in Developmental Disabilities, 33, 96–103.
Claes, C., Van Hove, G., Vandevelde, S., van Loon, J., & Schalock, R. L. (2010). Person-centered planning: Analysis of research and effectiveness. Intellectual and Developmental Disabilities, 48(6), 432–453.
Downs, S., & Black, N. (1998). The feasibility of creating a checklist for the assessment of the methodological quality both of randomized and non-randomized studies of health care interventions. Journal of Epidemiology and Community Health, 52, 377–384.
Edgerton, R. B. (1967). The cloak of competence: Stigma in the lives of the mentally retarded. Berkeley, CA: University of California.
Employment and Disability Institute. (2014). What is person-centered planning? Retrieved from http://ilr-edi-r1.ilr.cornell.edu/PCP/index.cfm
Evans, I. M. (2002). Trying to make apple pie an independent variable: Comment on “How science can evaluate and enhance person-centered planning. Research & Practice for Persons with Severe Disabilities, 27, 265–267.
Greenspan, S., Loughlin, G., & Black, R. S. (2001). Credulity and gullibility in people with developmental disorders: A framework for future research. International Review of Research in Mental Retardation, 24(1), 101–135.
Guscia, R., Harries, J., Kirby, N., Nettelbeck, T., & Taplin, J. (2005). Reliability of the Service Need Assessment Profile (SNAP): A measure of support for people with disabilities. Journal of Intellectual & Developmental Disability, 30, 24–30.
Guscia, R., Harries, J., Kirby, N., Nettelbeck, T., & Taplin, J. (2006a). Construct and criterion validities of the Service Need Assessment Profile (SNAP): A measure of support for people with disabilities. Journal of Intellectual & Developmental Disability, 31, 148–155.
Guscia, R., Harries, J., Kirby, N., & Nettelbeck, T. (2006b). Rater bias and the measurement of support needs. Journal of Intellectual & Developmental Disability, 31, 156–160.
Harries, J., Guscia, R., Kirby, N., Nettelbeck, T., & Taplin, J. (2005). Support needs and adaptive behaviors. American Journal on Mental Retardation, 110(5), 393–404.
Hennike, J. M., Myers, A. M., Realon, R. E., & Thompson, T. J. (2006). Development and validation of a needs-assessment instrument for persons with developmental disabilities. Journal of Developmental and Physical Disabilities, 18, 201–217.
Holburn, S. (2002). How science can evaluate and enhance person-centered planning. Research and Practice for Persons with Severe Disabilities, 27, 250–260.
Holburn, S., & Cea, C. D. (2007). Excessive positivism in person-centered planning. Research and Practice for Persons with Severe Disabilities, 32, 167–172.
Holburn, S., Gordon, A., & Vietze, P. M. (2007). Person-centered planning made easy: The PICTURE method. Baltimore, MD: Paul H. Brookes.
Holburn, S., Jacobson, J. W., Schwartz, A. A., Flory, M. J., & Vietz, P. M. (2004). The Willowbrook futures project: A longitudinal analysis of person-centered planning. American Journal on Mental Retardation, 109, 63–76.
Jacobson, J. W., & Mullick, J. A. (1992). A new definition of mental retardation or a new definition of practice? Psychology in Mental Retardation and Developmental Disabilities, 18, 9–14.
Jansson, L., Wennstrom, E., & Wiesel, F. A. (2005). The need of Support and Service Questionnaire (NSSQ): A brief scale to assess needs in clients with long-term mental disabilities. Nordic Journal of Psychiatry, 59, 465–472.
Jenaro, C., Cruz, M., Perez, M., Flores, N. E., & Vega, V. (2011). Utilization of the Supports Intensity Scale with psychiatric populations: Psychometric properties and utility for service delivery planning. Archives of Psychiatric Nursing, 25, 9–17.
Kim, S., Larson, S. A., & Lakin, K. C. (2001). Behavioral outcomes of deinstitutionalization for people with intellectual disability: A review of US studies conducted between 1980 and 1999. Journal of Intellectual & Developmental Disability, 26(1), 35–50.
Kuppens, S., Bossaert, G., Buntinx, W., Molleman, C., Van den Abbeele, A., & Maes, B. (2010). Factorial validity of the Supports Intensity Scale (SIS). American Journal on Intellectual and Developmental Disabilities, 115, 327–339.
Lamoureux-Hebert, M., & Morin, D. (2009). Translation and cultural adaptation of the Supports Intensity Scale in French. American Journal on Developmental Disability, 114, 61–66.
Lamoureux-Herbert, M., Morin, D., & Crocker, A. (2010). Support needs of individuals with mild and moderate intellectual disabilities and challenging behaviors. Journal of Mental Health Research in Intellectual Disabilities, 3, 67–84.
Landis, J. R., & Koch, G. G. (1977). The measurement of observer agreement for categorical data. Biometrics, 33, 159–174.
Lemay, R. A. (2009). Deinstitutionalization of people with developmental disabilities: A review of the literature. Canadian Journal of Community Mental Health, 28, 181–194.
Long, J. S. (1983). Confirmatory factor analysis: A preface to LISREL. Beverly Hills, CA: Sage.
Luckasson, R., Coulter, D. L., Polloway, E. A., Reiss, S., Schalock, R. L., Snell, M. E., … Stark, J. A. (1992). Mental retardation: Definition, classification, and systems of supports. Washington, DC: American Association on Mental Retardation.
MacEachron, A. E. (1982). Basic statistics in the human services. Austin, TX: Pro-Ed.
MacMillan, D. L., Gresham, F. M., & Siperstein, G. N. (1993). Conceptual and psychometric concerns about the 1992 AAMR definition of mental retardation. American Journal on Mental Retardation, 98(3), 325–335.
MacMillan, D. L., Gresham, F. M., & Siperstein, G. N. (1995). Heightened concerns over the 1992 AAMR definition: Advocacy versus precision. American Journal on Mental Retardation, 100(1), 87–97.
Martinez-Leal, R., Salvador-Carulla, L., Linehan, C., Walsh, P., Weber, G., Van Hove, G. …Kerr, M. (2011). The impact of living arrangements and deinstitutionalization in the health status of persons with intellectual disability in Europe. Journal of Intellectual Disability Research, 55, 858–872.
Mercer, J. R. (1979). SOMPA: Technical and conceptual manual. New York, NY: Psychological Corporation.
Morin, D., & Cobigo, V. (2009). Reliability of the Supports Intensity Scale (French version). Intellectual and Developmental Disabilities, 47, 24–30.
National Human Genome Research Institute. (2012). Learning about Phenylketonuria (PKU). Retrieved from http://www.genome.gov/25020037#al-6
Nicoll, T., & Flood, K. (2005). Self advocates leading person centered planning. Learning Disability Practice, 8(1), 14–17.
Nihira, K. (1999). Adaptive behavior: A historical overview. In R. L. Schalock (Ed.), Adaptive behavior and its measurement: Implications for the field of mental retardation (pp. 7–14). Washington, DC: American Association on Mental Retardation.
Nirje, B. (1969). The normalization principle and its human management implications. In R. Kugel & W. Wolfensberger (Eds.), Changing patterns in residential services for the mentally retarded (pp. 179–195). Washington, DC: President’s Committee on Mental Retardation.
Norris, M., & Lecavalier, L. (2010). Evaluating the use of exploratory factor analysis in developmental disability psychological research. Journal on Autism and Developmental Disorders, 40, 8–20.
O’Brien, C. L., & O’Brien, J. (2002). The origins of person-centered planning: A community of practice perspective. In S. Holburn & P. M. Vietze (Eds.), Person-centered planning: Research, practice, and future directions (pp. 3–28). Baltimore, MD: Paul H. Brookes.
O’Brien, C. L., O’Brien, J., & Mount, B. (1997). Person-centered planning has arrived … or has it? Mental Retardation, 35, 480–484.
Ortiz, M. C., Rio, C. J., Rodriguez, M., & Robaina, N. (2010). Applicability of the Spanish version of the Supports Intensity Scale (SIS), in the Mexican population with severe mental illness. Revista Latino-Americana de Enfermagaem, 18, 975–982.
Osborne, J. G. (2005). Person-centered planning: A faux fixe in the service of humanism? In J. W. Jacobson, R. M. Foxx, & J. A. Mulick (Eds.), Controversial therapies for developmental disabilities: Fad, fashion, and science in professional practice (pp. 313–329). Mahwah, NJ: Lawrence Erlbaum Associates.
Pearpoint, J., O’Brien, J., & Forest, M. (1998). PATH: Planning alternative tomorrows with hope. Toronto, ON, Canada: Inclusion.
Pledger, C. (2003). Discourse on disability and rehabilitation issues. American Psychologist, 58, 279–284.
Pope, A. M., & Tarlov, A. R. (1991). Disability in America: Toward a national agenda for prevention. Washington, DC: National Academy Press.
Riches, V. C. (2003). Classification of support needs in a residential setting. Journal of Intellectual & Developmental Disability, 28, 323–341.
Riches, V. C., Parmenter, T. R., Llewellyn, G., Hindmarsh, G., & Chan, J. (2009a). I-CAN: A new instrument to classify support needs for people with disability: Part I. Journal of Applied Research in Intellectual Disabilities, 22, 326–339.
Riches, V. C., Parmenter, T. R., Llewellyn, G., Hindmarsh, G., & Chan, J. (2009b). The reliability, validity and practical utility of measuring supports using the I-CAN instrument: Part II. Journal of Applied Research in Intellectual Disabilities, 22, 340–353.
Robertson, J., Emerson, E., Hatton, C., Elliott, J., McIntosh, B., Swift, P., …Joyce, T. (2006). Longitudinal analysis of the impact and cost of person-centered planning for people with intellectual disabilities in England. American Journal on Mental Retardation, 111, 400–416.
Robertson, J., Emerson, E., Hatton, C., Elliott, J., McIntosh, B., Swift, P., …Joyce, T. (2007). Person-centred planning: Factors associated with successful outcomes for people with intellectual disabilities. Journal of Intellectual Disability Research, 51, 232–243.
Salvia, J., & Ysseldyke, J. E. (2007). Assessment in special and inclusive education. Boston, MA: Houghton Mifflin.
Schalock, R. L., Borthwick-Duffy, S., Bradley, V. J., Buntinx, W. H. E., Coulter, D. L., Craig, E. M.,…. Yeager, M. H. (2010). Intellectual disability: Definition, classification, and systems of supports (11th ed.). Washington, DC: American Association on Intellectual and Developmental Disabilities.
Scheerenberger, R. C. (1987). A history of mental retardation: A quarter century of promise. Baltimore, MD: Paul H. Brookes.
Shogren, K. A., Thompson, J. R., Wehmeyer, M., Chapman, T., Tassé, M. J., & McLaughlin, C. A. (2014). Reliability and validity of the Supplemental Protection and Advocacy Scale of the Supports Intensity Scale. Inclusion, 2, 100–109.
Smit, W., Sabbe, B., & Prinzie, P. (2011). Reliability and validity of the Supports Intensity Scale (SIS) measured in adults with physical disabilities. Journal of Developmental and Physical Disabilities, 23, 277–287.
Smull, M. W. (2000). Listen, learn, act. Annapolis, MD: Support Development Associates.
Smull, M. W., & Sanderson, H. (2009). Essential lifestyle planning for everyone. Annapolis, MD: The Learning Community.
Stancliffe, R. J., Lakin, K. C., Shea, J. R., Prouty, R., & Coucouvanis, K. (2005). The economics of deinstitutionalization. In R. J. Stancliffe & K. C. Lakin (Eds.), Costs and outcomes of community services for people with intellectual disabilities. Paul H. Brookes: Baltimore.
Tadema, A. C., Vlaskamp, C., & Ruijssenaars, W. (2007). The validity of support profiles for children with profound multiple learning difficulties. European Journal of Special Needs Education, 22, 147–160.
Tate, R. L. (2004). Assessing support needs for people with traumatic brain injury: The care and needs scale (CANS). Brain Injury, 18, 445–460.
Taylor, S. J. (2001). The continuum and current controversies in the USA. Journal of Intellectual & Developmental Disability, 26, 15–33.
Thompson, J. R. (2013). Presidential Address - Race to catch the future. Intellectual and Developmental Disabilities, 51, 512–521.
Thompson, J. R., Bradley, V. J., Buntinx, W. H. E., Schalock, R. L., Shogren, K. A., Snell, M. E., … Yeager, M. H. (2009). Conceptualizing supports and support needs of people with intellectual disability. Intellectual and Developmental Disabilities, 47, 135–146.
Thompson, J. R., Bryant, B., Campbell, E. M., Craig, E. M., Hughes, C., Rotholz, D. A., … Wehmeyer, M. (2004a). Supports Intensity Scale (SIS). Washington, DC: American Association on Mental Retardation.
Thompson, J. R., Bryant, B., Campbell, E. M., Craig, E. M., Hughes, C., Rotholz, D. A., … Wehmeyer, M. (2004b). The Supports Intensity Scale (SIS) User’s manual. Washington, DC: American Association on Mental Retardation.
Thompson, J. R., Hughes, C., Schalock, R. L., Silverman, W., Tassé, M. J., Bryant, B.,…Campbell, E. M. (2002). Integrating supports in assessment and planning. Mental Retardation, 40, 390–405.
Thompson, J. R., Tassé, M. J., & McLaughlin, C. A. (2008). Interrater reliability of the Supports Intensity Scale (SIS). American Journal on Mental Retardation, 113, 231–237.
Thompson, J. R., & Viriyangkura, Y. (2013). Supports and support needs. In M. L. Wehmeyer (Ed.), Oxford handbook of positive psychology and disability (pp. 317–337). Oxford, England: Oxford University Press.
Thompson, J. R., Wehmeyer, M. L., Hughes, C., Shogren, K. A., Little, T. D., Copeland, S. R., …Tassé, M. J. (in press). Supports Intensity Scale – Children’s Version. Washington, DC. American Association on Intellectual and Developmental Disabilities.
Thompson, J. R., Wehmeyer, M. L., Hughes, C., Shogren, K. A., Palmer, S. B., & Seo, H. (2014). The Supports Intensity Scale – Children’s Version. Inclusion, 2, 140–149.
Vandercook, T., York, J., & Forest, M. (1989). The McGill Action Planning System (MAPS): A strategy for building the vision. Journal of the Association for Persons with Severe Handicaps, 14, 205–215.
Verdugo, M., Arias, B., Ibanez, A., & Schalock, R. L. (2010). Adaptation and psychometric properties of the Spanish version of the Supports Intensity Scale (SIS). American Association on Intellectual and Developmental Disabilities, 115, 496–503.
VOR (2014). VOR: Speaking out for people with intellectual and developmental disabilities. Retrieved from http://www.vor.net/
Wehmeyer, M. L. (2013). The story of intellectual disability: An evolution of meaning, understanding, & public perception. Baltimore, MD: Paul H. Brookes.
Wehmeyer, M. L., Buntinx, W. H. E., Lachapelle, Y., Luckasson, R. A., Schalock, R. L., Verdugo, M. A. …. Yeager, M. H. (2008). The intellectual disability construct and its relation to human functioning. Intellectual and Developmental Disabilities, 46, 311–318.
Wehmeyer, M., Chapman, T. E., Little, T. D., Thompson, J. R., Schalock, R., & Tassé, M. J. (2009). Efficacy of the Supports Intensity Scale (SIS) to predict extraordinary support needs. American Journal on Intellectual and Developmental Disabilities, 114, 3–14.
Wells, J. C., & Sheehey, P. H. (2012). Person-centered planning: Strategies to encourage participation and facilitate communication. Teaching Exceptional Children, 44(3), 32–39.
Westling, D. L., & Fox, L. (2009). Teaching students with severe disabilities (4th ed.). Upper Saddle River, NJ: Pearson Education.
World Health Organization. (2001). The International Classification of Functioning, Disability and Health. Geneva, Switzerland: Author.
Young, L., Sigafoos, J., Suttie, J., Ashman, A., & Grevell, P. (1998). Deinstitutionalization of persons with intellectual disabilities: A review of Australian studies. Journal of Intellectual and Developmental Disability, 23, 155–170.
Author information
Authors and Affiliations
Corresponding author
Editor information
Editors and Affiliations
Rights and permissions
Copyright information
© 2016 Springer International Publishing Switzerland
About this chapter
Cite this chapter
Thompson, J.R., DeSpain, S. (2016). Community Support Needs. In: Singh, N. (eds) Handbook of Evidence-Based Practices in Intellectual and Developmental Disabilities. Evidence-Based Practices in Behavioral Health. Springer, Cham. https://doi.org/10.1007/978-3-319-26583-4_7
Download citation
DOI: https://doi.org/10.1007/978-3-319-26583-4_7
Published:
Publisher Name: Springer, Cham
Print ISBN: 978-3-319-26581-0
Online ISBN: 978-3-319-26583-4
eBook Packages: Behavioral Science and PsychologyBehavioral Science and Psychology (R0)