Skip to main content
SpringerLink
Log in
SpringerLink
Log in

Community Living and Participation

  • Chapter
  • First Online:
Handbook of Evidence-Based Practices in Intellectual and Developmental Disabilities

Part of the book series: Evidence-Based Practices in Behavioral Health ((EBPBH))

Abstract

Community living used to mean “not living in an institution.” Today, in the USA, community living means much more. It means living in the community in which a person wants to live and it also means participating in a person’s community of choice. Community living means having opportunities to work in the community, to develop skills related to home living, to navigate the community, to ensure self-care, safety, and personal health. It also means participating in community activities and things of personal interest and being able to maintain and expand social networks, friends, family members, and allies. Most children and adults with intellectual and developmental disabilities (IDD) live at home with their families or in supported community living arrangements. This is the result of tremendous advocacy on the part of families, people with disabilities and their allies. It is also the result of litigation and policies that provide certain promises and protections related to community, local, national, and in some ways, international levels. This chapter provides an overview of community living and participation for people with IDD with a focus on where they live, work, and have fun, and about the people and processes that support them in having quality lives in their communities of choice.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Log in via an institution
Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 269.00
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD 349.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info
Hardcover Book
USD 499.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

References

  • Abbot, S., & McConkey, R. (2006). The barriers to social inclusion as perceived by people with intellectual disabilities. Journal of Intellectual Disabilities, 10, 275–287.

    Article  Google Scholar 

  • Abery, B. H., & Stancliffe, R. J. (2003). An ecological theory of self-determination: Theoretical foundation. In M. L. Wehmeyer, B. H. Abery, D. E. Mithaug, & R. J. Stancliffe (Eds.), Theory in self-determination: Foundations for educational practices (pp. 25–42). Springfield, IL: Charles C Thomas.

    Google Scholar 

  • American Association on Intellectual and Developmental Disabilities & The Arc of the United States. (2008). Employment: Joint position statement. Retrieved June 3, 2012 from http://aaidd.org/content_148.cfm?navID=31

  • American Network of Community Options and Resources (ANCOR). (2010). 2009 Direct support professionals wage study. Alexandria, VA: Author.

    Google Scholar 

  • American Psychological Association (APA). (2015, February 11). Positive aspects of caregiving. Retrieved from American Psychological Association Web site http://www.apa.org/pi/about/publications/caregivers/faq/positive-aspects.aspx

  • Anderson, L., Larson, S., & Wuorio, A. (2010). FINDS National Survey: Family and individual needs for disability supports. Retrieved from http://www.thearc.org/document.doc?id=3673.

    Google Scholar 

  • Anderson, L. L., Larson, S. A., & Wuorio, A. (2011). 2010 FINDS National Survey Technical Report Part 1: Family caregiver survey. Minneapolis: University of Minnesota, Research and Training Center on Community Living.

    Google Scholar 

  • Barrett, P., Hale, B., & Butler, M. (2014). Family care and social capital: Transitions in informal care. Dordrecht, The Netherlands: Springer.

    Book  Google Scholar 

  • Bates, P., & Davis, F. A. (2004). Social capital, social inclusion and services for people with learning disabilities. Disability & Society, 19(3), 195–207.

    Article  Google Scholar 

  • Blacher, J., Baker, B. L., & MacLean, W. E. (2007). Positive impact of intellectual disability on families. American Journal on Mental Retardation, 112(5), 330–348.

    Article  PubMed  Google Scholar 

  • Bogenschutz, M., Hewitt, A., Hall-Lande, J., & LaLiberte, T. (2010). Status and trends in the direct support workforce in consumer directed supports. Intellectual and Developmental Disabilities, 48(5), 345–360.

    Article  PubMed  Google Scholar 

  • Bradley, V., Agosta, J., Smith, G., Taub, S., Ashbaugh, J., Silver, J., & Heaviland, M. (2001). The Robert Wood Johnson Foundation: Self-determination initiative: Final impact assessment report. Cambridge, MA: The Human Services Research Institute.

    Google Scholar 

  • Bragdon, T. (2014). The case for inclusion. Washington, DC: United Cerebral Palsy. Retrieved from http://cfi2014.ucp.org/wp-content/uploads/2014/03/Case-for-Inclusion-2014.pdf.

    Google Scholar 

  • Butterworth, J., Smith, F. A., Hall, A. C., Migliore, A., Winsor, J., & Domin, D. (2014). State Data: The national report on employment services and outcomes. Boston, MA: University of Massachusetts Boston, Institute for Community Inclusion.

    Google Scholar 

  • Centers for Medicare & Medicaid Services. (2014). 1915(i) State plan home and community-based services, 5-year period for waivers, provider payment reassignment, setting requirements for community first choice, and 1915(c) home and community-based services waivers CMS 2249-F and 2296-F (CMCS Informational Bulletin). Baltimore, MD: Author.

    Google Scholar 

  • Cummins, R. A. (2001). The subjective well-being of people caring for a family member with a severe disability at home: A review. Journal of Intellectual and Developmental Disability, 26, 83–100.

    Article  Google Scholar 

  • Doty, P., Kasper, J., & Litvak, S. (1996). Consumer-directed models of personal care: Lessons from Medicaid. The Milbank Quarterly, 74(3), 377–409.

    Article  PubMed  Google Scholar 

  • Emerson, E. (2007). Poverty and people with intellectual disabilities. Mental Retardation and Developmental Disabilities, 13(2), 107–113.

    Article  Google Scholar 

  • Emerson, E., & McVilly, K. (2004). Friendship activities of adults with intellectual disabilities in supported accommodation in Northern England. Journal of Applied Research in Intellectual Disabilities, 17(3), 191–197.

    Article  Google Scholar 

  • Erickson, W. Lee, C., & von Schrader, S. (2014). 2012 Disability Status Report: United States. Ithaca, NY: Cornell University Employment and Disability Institute (EDI).

    Google Scholar 

  • Gaventa, B. (2008). Spiritual and religious supports: What difference do they make? Exceptional Parent, 38(3), 66–68.

    Google Scholar 

  • Glidden, L. M., Jobe, B. M., & Floyd, F. (2007). Measuring parental daily rewards and worries in the transition to adulthood. American Journal on Mental Retardation, 112(4), 275–288.

    Article  PubMed  Google Scholar 

  • Greef, A. P., & Nolting, C. (2013). Resilience in families of children with developmental disabilities. Families, Systems & Health, 31, 396–405.

    Article  Google Scholar 

  • Greene, J. (2007, July). State approaches to consumer direction in Medicaid (Issue Brief). Center for Health Care Strategies. Retrieved from http://www.chcs.org/usr_doc/State_Approaches_to_Consumer_Direction.pdf

  • Hall-Lande, J., Hewitt, A., Bogenschutz, M., & Laliberte, T. (2011). County administrator perspectives on the implementation of self-directed supports. Journal of Disability Policy Studies, 22(4), 247–256.

    Article  Google Scholar 

  • Hastings, R. P., & Taunt, H. M. (2002). Positive perceptions in families of children with developmental disabilities. American Journal on Mental Retardation, 107(2), 116–127.

    Article  PubMed  Google Scholar 

  • Heller, T., Arnold, C., van Heumen, L., McBride, E., & Factor, A. (2012). Self-directed support: Impact of hiring practices on adults with intellectual and developmental disabilities and families. American Journal on Intellectual and Developmental Disabilities, 117(6), 464–477.

    Article  PubMed  Google Scholar 

  • Hewitt, A., & Lakin, K. C. (2001). Issues in the direct support workforce and their connections to the growth, sustainability and quality of community supports. Minneapolis: Research and Training Center, University of Minnesota.

    Google Scholar 

  • Hewitt, A., & Larson, S. (2007). The direct support workforce in community supports to individuals with developmental disabilities: Issues, implications, and promising practices. Mental Retardation and Developmental Disabilities Research Reviews, 13(2), 178–187.

    Article  PubMed  Google Scholar 

  • Hewitt, A., Larson, S., Edelstein, S., Seavey, D., Hoge, M., & Morris, J. (2008). A synthesis of direct service workforce demographics and challenges across intellectual/developmental disabilities, aging, physical disabilities, and behavioral health. Minneapolis: University of Minnesota, Institute on Community Integration, Research and Training Center on Community Living.

    Google Scholar 

  • Horst, L., Werner, R. R., & Werner, C. L. (2000). Case management for children and families. Journal of Child and Family Nursing, 3, 5–14.

    PubMed  Google Scholar 

  • Kemper, P. (2007). Social experimentation at its best: The cash and counseling demonstration and its implications. Health Services Research, 42, 577–586.

    Article  PubMed  PubMed Central  Google Scholar 

  • Kiernan, W. E., Hoff, D., Freeze, S., & Mank, D. M. (2011). Employment first: A beginning not an end. Intellectual and Developmental Disabilities, 49(4), 300–304.

    Article  PubMed  Google Scholar 

  • Knox, M., & Hickson, F. (2001). The meanings of close friendship: The views of four people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 14, 276–291.

    Article  Google Scholar 

  • LaLiberte, T., & Hewitt, A. (2008). The importance of competency-based training for direct support professionals. In Impact: feature issue on direct support workforce development. Minneapolis, MN: Institute on Community Integration.

    Google Scholar 

  • Laliberte, T., and Hewitt, A. (2007). The Importance of Competency based Training for Direct Support Professionals. In IMPACT: Feature Issue on Direct Support Workforce Development. S. Larson, A. Hewitt, N. McCulloh & T. Laliberte (Eds.), Minneapolis: Institute on Community Integration (UAP), University of Minnesota (College of Education and Human Development).

    Google Scholar 

  • Lane v Kitzhaber (2012) U.S. District Court District of Oregon Portland Division, Case No. 3:12-cv-00138-ST Paula Lane et al. vs. John Kitzhber, Governor of the State of Oregon et al. (2012). Retrieved from http://www.ada.gov/olmstead/documents/lane_complaint.pdf.

  • Larson, S. A., Hallas-Muchow, L., Aiken, F., Hewitt, A., Pettingell, S., Anderson, L. L., … Kardell, Y. (2014). In-home and residential long-term supports and services for persons with intellectual or developmental disabilities: Status and trends through 2012. Minneapolis: University of Minnesota, Research and Training Center on Community Living, Institute on Community Integration.

    Google Scholar 

  • Larson, S., Hewitt, A., & Knoblauch, B. (2005). Recruitment, retention, and training challenges in community human services: A review of the literature. In S. Larson & A. Hewitt (Eds.), Staff recruitment, retention, and training strategies for community human services organizations (pp. 1–18). Baltimore, MD: Paul H. Brookes.

    Google Scholar 

  • Larson, S. A., Ryan, A., Salmi, P., Smith, D., & Wuorio, A. (2012). Residential services for persons with developmental disabilities: Statues and trends through 2010. Minneapolis: University of Minnesota, Research and Training Center on Community Living, Institute on Community Integration.

    Google Scholar 

  • McConkey, R. (2006). Variations in the social inclusion of people with intellectual disabilities in supported living schemes and residential settings. Journal of Intellectual Disability Research, 51(3), 207–217.

    Article  Google Scholar 

  • Migliore, A., Mank, D., Grossi, T., & Rogan, P. (2007). Integrated employment of sheltered workshops: Preferences of adults with intellectual disabilities, their families, and staff. Journal of Vocational Rehabilitation, 26(1), 5–19.

    Google Scholar 

  • Moseley, C. R. (2001). Self-determination: From new initiative to business as usual. National Resource Center for Participant Directed Services (NRCPDS) Inventory (2014). Retrieved from http://www.bc.edu/schools/gssw/nrcpds/

  • National Alliance for Direct Support Professionals. (2015, February 11). Code of ethics: National Alliance for Direct Support Professionals. Retrieved from https://www.nadsp.org/library/code-of-ethics.html

  • National Association of Direct Support Professionals (NADSP). (2010). National DSP recognition week begins September 12, 2010: NADSP. Retrieved from https://www.nadsp.org/communication/dsps-in-the-news/7-general/71-joint-press-release-with-the-national-advocacy-campaign.html

  • National Core Indicators. (2014). At-a-glance report, 2012–13. Retrieved from http://www.nationalcoreindicators.org/upload/core-indicators/NCI_At_A_Glance_12-13.pdf

  • National Disability Rights Network. (2012). Beyond segregated and exploited: Update on the employment of people with disabilities. Washington, DC: Author.

    Google Scholar 

  • National Governors Association. (2012). A better bottom line: Employing people with disabilities. Retrieved from http://www.nga.org/files/live/sites/NGA/files/pdf/2013/NGA_2013BetterBottomLineWeb.pdf

  • National Resource Center for Participant Directed Services [NRCPDS] Inventory. (2014). Retrieved from http://www.bc.edu/schools/gssw/nrcpds/

  • Niemiec, B., Lavin, D., & Owens, L. (2009). Establishing a national employment first agenda. Journal of Vocational Rehabilitation, 31, 139–144.

    Google Scholar 

  • Nord, D., & Hoff, D. (2013). Employment first across the nation: Progress on the policy front. Minneapolis: Research and Training Center on Community Living at the University of Minnesota.

    Google Scholar 

  • Nord, D., Luecking, R., Mank, D., Kiernan, W., & Wray, C. (2013). The state of the science of employment and economic self-sufficiency for people with intellectual and developmental disabilities. Intellectual and Developmental Disabilities, 51(5), 376–384.

    Article  PubMed  Google Scholar 

  • Olmstead v. L. C. 527 U.S. 581 (1999). Retrieved from https://supreme.justia.com/cases/federal/us/527/581/case.html.

  • O’Rourke, A., Grey, I. M., Fuller, R., & McClean, D. (2004). Satisfaction with living arrangements of older adults with intellectual disability: Service users’ and caregivers’ views. Journal of Learning Disability, 8, 12–29.

    Google Scholar 

  • Parish, S. L., Pomeranz-Essley, A., & Braddock, D. (2003). Family support in the United States: Financing trends and emerging initiatives. Mental Retardation, 41, 174–187.

    Article  PubMed  Google Scholar 

  • Parish, S. L., Seltzer, M. M., Greenberg, J. S., & Floyd, F. (2004). Economic implications of caregiving at midlife: Comparing parents with and without children who have developmental disabilities. Mental Retardation, 42, 413–426.

    Article  PubMed  Google Scholar 

  • PHI. (2013). Occupational projections for direct-care workers: 2010–2020. Bronx, NY: Author. Retrieved from http://phinational.org/sites/phinational.org/files/phi_factsheet1update_singles_2.pdf.

    Google Scholar 

  • Prouty, R. W., Smith, G., & Lakin, K. C. (2007). Residential services for persons with developmental disabilities: Status and trends through 2006. Minneapolis: University of Minnesota, Research and Training Center on Community Living/Institute on Community Integration.

    Google Scholar 

  • Rogan, P., & Rinne, S. (2011). National call for organizational change from sheltered to integrated employment. Intellectual and Developmental Disabilities, 49(4), 248–260.

    Article  PubMed  Google Scholar 

  • Singer, G. H., Biegel, D. E., & Ethridge, B. L. (2009). Toward a cross disability view of family support for caregiving families. Journal of Family Social Work, 12(2), 97–118.

    Article  Google Scholar 

  • Smith, G., Agosta, J., Fortune, J., & O’Keeffe, J. (2007). Gauging the use of HCBS support waivers for people with intellectual and developmental disabilities: Final project report. Washington, DC: US Department of Health and Human Services.

    Google Scholar 

  • Talley, R. C., & Crews, J. E. (2007). Framing the public health of caregiving. American Journal of Public Health, 97, 224–228.

    Article  PubMed  PubMed Central  Google Scholar 

  • Test, D., Solow, J., & Flowers, C. (1999). North Carolina direct support professionals study: Final report. Charlotte, NC: University of North Carolina at Charlotte.

    Google Scholar 

  • The Arc. (2011). Still in the shadows with their future uncertain. A report on Family and Individual Needs for Disability Supports (FINDS). Retrieved from http://www.thearc.org/document.doc?id=3672

  • Think College. (2014). Profiles of students in TPSID programs. Retrieved from http://www.thinkcollege.net/images/stories/TPSID%20infographic_F.pdf.

    Google Scholar 

  • US Department of Labor. (2015). Home health and personal care aides. Bureau of Labor Statistics: US Department of Labor. Retrieved from http://www.bls.gov/ooh/healthcare/home-health-and-personal-care-aides.htm

  • United Nations. (2006). Convention on the rights of persons with disabilities. Retrieved February 26, 2013 from http://www.un.org/disabilities/convention/conventionfull.shtml

  • United States Department of Justice. (2014). Olmstead: Integration for everyone. Olmstead enforcement. Retrieved from http://www.ada.gov/olmstead/olmstead_cases_list2.htm

  • United States Senate. Committee on Health, Education, Labor, & Pensions. (2012). Unfinished business: Making employment of people with disabilities a national priority. Washington, DC: United States Congress.

    Google Scholar 

  • United States Senate. Health, Education, Labor, and Pensions Committee. (2013). Separate and unequal: States fail to fulfill the community living promise of the Americans with Disabilities Act. Washington, DC: Author.

    Google Scholar 

  • United States. v. Rhode Island. 1:14-cv-00175 (Rhode Island, 2014).

    Google Scholar 

  • Walker, P., Hewitt, A., Bogenschutz, M., & Hall-Lande, J. (2009). Implementation of consumer-directed services for persons with intellectual and developmental disabilities: A national study . Policy Research Brief (Vol. 20(1)). Minneapolis: University of Minnesota, Institute on Community Integration, Research and Training Center on Community Living.

    Google Scholar 

  • Warfield, M., Chiri, G., Leutz, W., & Timberlake, M. (2014). Family well-being in a participant-directed autism waiver program: The role of relational coordination. Journal of Intellectual Disability Research, 58, 1365–2788.

    Article  Google Scholar 

  • Wehmeyer, M.L., 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.

    Article  PubMed  Google Scholar 

  • Williamson, H. J., & Perkins, E. A. (2014). Family caregivers of adults with intellectual and developmental disabilities: Outcomes associated with U.S. services and supports. Intellectual and Developmental Disabilities, 52, 147–159.

    Article  PubMed  Google Scholar 

Download references

Acknowledgements

Development of this chapter was funded through Grant #133B130006 to the Research and Training Center on Community Living by the National Institute on Disabilities and Rehabilitation Research, US Department of Education and through cooperative agreements #90DN0291-01 and #90DN0297 from the Administration on Community Living, US Department of Health and Human Services. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not therefore necessarily represent official NIDRR or ACL policy.

Author information

Authors and Affiliations

  1. Research and Training Center on Community Living, University of Minnesota, 150 Pillsbury Dr. SE, Minneapolis, MN, 55455, USA

    Amy S. Hewitt, Kristin Hamre, Kelly Nye-Lengerman, Jennifer Hall-Lande & Libby Hallas-Muchow

Authors
  1. Amy S. Hewitt
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Kristin Hamre
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Kelly Nye-Lengerman
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Jennifer Hall-Lande
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Libby Hallas-Muchow
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Amy S. Hewitt .

Editor information

Editors and Affiliations

  1. Department of Psychiatry and Health Beha, Medical College of Georgia, Augusta Univ, Augusta, Georgia, USA

    Nirbhay N. Singh

Rights and permissions

Reprints and permissions

Copyright information

© 2016 Springer International Publishing Switzerland

About this chapter

Cite this chapter

Hewitt, A.S., Hamre, K., Nye-Lengerman, K., Hall-Lande, J., Hallas-Muchow, L. (2016). Community Living and Participation. 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_34

Download citation

Publish with us

Policies and ethics

Search

Navigation