Deinstitutionalization: The Right Thing to Do

[i]. K. C. Lakin, S. Larson, P. Salmi, and A. Webster (2010). Residential Services for Persons with Developmental Disabilities: Status and Trends through 2009. Research and Training Center on Community Living, Institute on Community Integration/UCEDD, College of Education and Human Development, University of Minnesota. Accessed 7/21/2011. http://rtc.umn.edu/docs/risp2009.pdf

[ii]. R. J. Stancliffe, K. C. Lakin, S. Taub, G. Chiri, and S. Y. Byun (2009). Satisfaction and Sense of Well-being among Medicaid ICF/MR and HCBS Recipients in Six States. Intellectual and Developmental Disabilities 47(2) 63–83; S. Kim, S. A. Larson, and K. C. Lakin (1999). Behavioral Outcomes of Deinstitutionalization for People with Intellectual Disabilities: A Review of Studies Conducted Between 1980 and 1999. Policy Research Brief (University of Minnesota/Minneapolis, Institute on Community Integration) 10(1); A. Kozma, J. Mansell, and J. Beadle-Brown (2009). Outcomes in Different Residential Settings for People with Intellectual Disability: A Systematic Review. American Journal of Intellectual and Developmental Disabilities 114(3): 193–222.

[iii]. S. Gelser (2010). Erasing Fairview’s Horrors. Published online on OregonLive.com. Accessed March 25, 2012. http://www.oregonlive.com/opinion/index.ssf/2010/01/

[iv]. P. J. Batten (1992). The Descriptive Epidemiology of Unnatural Deaths in Oregon’s State Institutions: A 25-Year (1963–1987) Study: III. A 25-Year Overview of Unnatural Deaths in the Mental and Correctional Facilities. American Journal of Forensic Medicine and Pathology 13(2): 159–172.

[v]. Gelser, 2010.

[vi]. A. Judd (2010). Georgia Mental Health Talks Fail. Atlanta Journal Constitution
July 1, 2010.

[vii]. Equip for Equality (2008). Life and Death in State-Operated Developmental Disability Institutions. Accessed January 23, 2011. http://www.equipforequality.org/publications/01-10-08.pdf

[viii]. Department of Justice (2012). Olmstead: Community Integration for Everyone. Accessed March 25, 2012. http://www.ada.gov/olmstead/index.htm

[ix]. Department of Justice (2011). Statement of the Department of Justice on Enforcement of the Integration Mandate of Title II of the?Americans with Disabilities Act and Olmstead v. L.C. Accessed April 2, 2012. http://www.ada.gov/olmstead/q&a_olmstead.htm

Evolution: From Institutions to Community

[x]. Lakin et al., 2010.

[xi]. Rosa’s Law, 124 STAT. 2643. Public Law 111–256—Oct. 5, 2010 (removes the phrase “mental retardation” from federal laws).

[xii]. S. Eiken, B. Burwell, L. Gold, and K. Sredl (2010). Medicaid HCBS Waiver Expenditures: FY 2004–2009. Thomson Reuters. Accessed January 25, 2011. http://www.hcbs.org/files/193/9645/HCBSWaivers2009.pdf

[xiii]. K. Tritz (2006). Medicaid’s Home and Community-Based Services State Plan Option: Section 6086 of the Deficit Reduction Act of 2005. Congressional Research Service. RS22448.

[xiv]. C. V. Irvin and J. Ballou (2010). The Starting Point: The Balance of State Long-Term Care Systems Before the Implementation of the Money Follows the Person Demonstration. The National Evaluation of the Money Follows the Person (MFP) Demonstration Grant Program: Reports from the Field. No 4. Accessed January 25, 2011. http://www.mathematica-mpr.com/publications/pdfs/health/mfpfieldrpt4.pdf

[xv]. Eiken et al., 2010.

[xvi]. S. 683-111th Congress: Community Choice Act of 2009 (2009). In GovTrack.us (database of federal legislation). Retrieved April 2, 2012. http://www.govtrack.us/congress/bills/111/s683


[i]. Autistic Self Advocacy Network, the National Youth Leadership Network, and Self-Advocates Becoming Empowered (2011). Keeping the Promise: Self Advocates Defining the Meaning of Community Living. Accessed March 25, 2012. http://www.acf.hhs.gov/

Population and Setting Type

[ii]. Lakin et al., 2010.

[iii]. Lakin et al., 2010.

[iv]. Lakin et al., 2010.

Population Variation Among States

[i]. Lakin et al., 2010.

Population Variation Among States

[i]. Lakin et al., 2010.

Deinstitutionalization: Goal and Strategies

[ii]. The White House, Office of the Press Secretary (2009). President Obama Commemorates Anniversary of Olmstead and Announces New Initiatives to Assist Americans with Disabilities (Press Release). Retrieved from http://www.whitehouse.gov/
 March 20, 2012.

Forging Ahead

[i]. S. J. Taylor (2008). The Direct Support Workforce Crisis: Can Unions Help Resolve This? Center on Human Policy, Syracuse University, policy paper.

[ii]. American Network of Community Options and Resources (ANCOR) (2010). 2009 Direct Support Professionals Wage Study. Alexandria, VA. Accessed 2/22/11. http//www.ancor.org/workforce-crisis

[iii]. R. J. Stancliffe, K. C. Lakin, J. R. Shea, R. W. Prouty, and K. Coucouvanis (2005). The Economics of Deinstitutionalization. Chapter 13 in Costs and Outcomes of Community Services for People with Intellectual Disabilities., edited by R. J. Stancliffe and K. C. Lakin (Baltimore, MD: Brookes Publishing).

Overcoming Misconceptions

[i]. Lakin et al., 2010.

[ii]. Maryland Developmental Disabilities Administration (2008). Rosewood Center –Plan for Services to Residents. Maryland Department of Health and Mental Hygiene, Developmental Disabilities. Administration transmitted to Governor Martin O’Malley to fulfill the requirements of Chapter 445 (House Bill 970) of the 2007 General Assembly. January 15, 2008. Accessed January 23, 2011 http://cdm266901.cdmhost.com/cdm/singleitem/

[iii]. Oregon Psychiatric Security Review Board (2008). Conditional Release and Community Treatment Facilities. Accessed March 24, 2012. http://www.leg.state.or.us/tomei/special_topics/psrb_factsheet_070208.pdf

[iv]. Maryland Developmental Disabilities Administration, 2008; Vermont Agency of Human Services, Department of Disabilities, Aging and Independent Living (2010). Report to Representative William Lippert and Representative Michael Marcotte on Individuals with Developmental Disabilities Who Pose a Public Safety Risk. Accessed March 24, 2012. http://www.ddas.vermont.gov/ddas-publications/publications-dds/publications-dds-documents/dds-publications-other/ds-offenders-report-2009

[v]. Georgia Department of Human Services (2011). Crisis System. Unpublished data provided by E. Towson, Quality Assurance Manager, Georgia Department of Human Services; Georgia Division of Developmental Services (2012). Georgia Crisis Response System for Individuals with Developmental Disabilities. Accessed March 23, 2012. http://www.files.georgia.gov/DBHDD/DD/Formatted%20fact%20sheet_English_Final.pdf

[vi]. K. C. Lakin, R. Doljanac, S. Y. Byun, and R. Stancliffe (2006). Medicaid Home and Community-Based Services for Persons with Intellectual and Developmental Disabilities: Background and Findings from Consumer Interviews and the Medicaid Statistical Information Systems. Prepared for Centers for Medicare and Medicaid Services. Accessed March 30, 2011. http://rtc.umn.edu/docs/HCBSFinalrprt.pdf

[vii]. State of California, Quarterly Client Characteristics Report, December 2007. Accessed March 12, 2011. http://www.dds.ca.gov/FactsStats/docs/Dec07_QRTTBLS.pdf

[viii]. Lakin et al., 2010.

[ix]. Lakin et al., 2010.

[x]. Stancliffe et al., 2005.

[xi]. Stancliffe et al., 2005.

[xii]. These studies are reviewed in Stancliffe et al., 2005.

[xiii]. Massachusetts Executive Office of Administration and Finance (2010). Report to the Legislature on DDS’s Community Expansion and Facility Consolidation Plan.

[xiv]. Kansas Facilities Closure and Realignment Commission (2009). Facilities Closure and Realignment Commission Meeting Discussion on Rehabilitation Center for the Blind and Visually Impaired, Kansas Neurological Institute and Parsons State Hospital, October 26, 2009, Topeka, Kansas.

[xv]. J. E. Bascom (2009). Vermont Developmental Disability Services Annual Report 2009. Division of Disability and Aging Services Department of Disabilities, Aging and Independent Living Agency of Human Services State of Vermont. Accessed January 23, 2011. http://www.leg.state.vt.us/reports/2009ExternalReports/243718.pdf

[xvi].J. Conroy and V. Bradley (1985). The Pennhurst Longitudinal Study: A Report of Five years of Research and Analysis (Philadelphia, PA: Temple University Developmental Disabilities Center, and Boston, MA: Human Services Research Institute).

[xvii]. Stancliffe et al., 2005.

[xviii]. R. M. Gettings, R. Cooper, R., and M. Chmura (2003). Financing Services to Individuals with Developmental Disabilities in the State of Illinois. National Association of State Directors of Developmental Disabilities Services, Inc. Accessed January 25, 2011. http://www.state.il.us/agency/icdd/communicating/publications.htm

[xix]. D. Braddock, R. Hemp, M. C. Rizzolo, Haffer, E. S. Tanis, and J. Wu (2011). The State of the States in Developmental Disabilities (8th edition) (Denver: University of Colorado, Coleman Institute for Disabilities).

[xx]. Eiken et al., 2010.

Myths 5 & 6

[i]. Lakin et al., 2010.

[ii]. The Arc of Oregon (2007). The Basics About Self-Directed Support for Adults. Accessed March 17, 2012. www.arcoregon.org/staley.htm

[iii]. Gelser, 2010.

[iv]. Kozma et al., 2009.

[v]. R. L. Schalock and M. A. Verdugo (2002). Handbook on Quality of Life for Human Service Practitioners (Washington, DC: American Association on Mental Retardation).

[vi]. Human Services Research Institute (2011). National Core Indicators, Consumer Outcomes – Phase XII Final Report, 2009–2010 Data. Accessed April 1, 2012. http://www.nationalcoreindicators.org/upload/core-indicators/NCI_CS_09-10_FINAL_Report_2.pdf

Myths 6 - 9

[i]. K. C. Lakin, S. A. Larson Kim, and S. Kim (2011). Behavioral Outcomes of Deinstitutionalization for People with Intellectual and Developmental Disabilities: A Review of Studies Conducted Between 1977 and 2010. Policy Research Brief, April 2011, Vol. 2, No. 2, pp. 1–12.

[ii]. Kozma et al., 2009.

[iii]. P. N. Walsh, E. Emerson, C. Lobb, C. Hatton, V. Bradley, R. L. Schalock, and C. Moseley (2010). Supported Accommodation for People With Intellectual Disabilities and Quality of Life: An Overview. Journal of Policy and Practice in Intellectual Disabilities 7(2):137–142.

[iv]. Stancliffe et al., 2009.

[v]. G. Blumenthal (2011). Does it make sense to close state developmental disabilities institutions? Association of Developmental Disabilities Providers. Accessed March 2, 2012. http://www.addp.org/index.php/links-resources/67

[vi]. J. Jaffee (2012). Working Toward Closing New Jersey’s Institutions While Treating Workers with Respect. People and Families. New Jersey Council on Developmental Disabilities. Accessed March 25, 2012. http://www.njcdd.org/Publications/PeopleFamilies/

[vii]. Jaffee, 2012.

[viii]. Oregon Department of Human Services (2010). Fairview Community Housing Trust: Grant Procedures. Accessed March 25, 2012. https://apps.state.or.us/Forms/

[ix]. K. F. O’Brian and E. S. Zaharia (1998). Is it Life Threatening to Live in the Community? Commentary. Mental Retardation. October 1998.

[x]. J. W. Conroy and M. Adler (1998). Mortality Among Pennhurst Class Members, 1978 to 1989: A Brief Report. Mental Retardation 36(5): 380–385.

[xi]. P. Lerman, D. H. Apga, and T. Jordan (2003). Deinstitutionalization and Mortality: Findings of a Controlled Research Design in New Jersey. Mental Retardation 41(4): 225–236.

[xii]. T. Heller, A. R. Factor, K. Hsieh, and J. E. Hahn (1998). Impact of Age and Transitions Out of Nursing Homes for Adults with Developmental Disabilities. American Journal on Mental Retardation 103(3): 236–248.

[xiii]. K. Hsieh, T. Heller, and S. Freels (2009). Residential Characteristics, Social Factors, and Mortality Among Adults With Intellectual Disabilities: Transitions Out of Nursing Homes. Intellectual and Developmental Disabilities 47(6): 447–465.

[xiv]. M. Durkin (1996). Beyond Mortality—Residential Placement and Quality of Life among Children with Mental Retardation. American Journal of Public Health 86(10): 1359–1361; D. Strauss, Kastner, R. Shavelle (1998). Mortality of Adults with Developmental Disability Living in California Institutions and Community Care 1985–1994. Journal of Mental Retardation 36: 360–371.

[xv]. Lerman et al., 2003.

[xvi]Olmstead v. L.C., 527 U.S. 581 (1999).

National Council on Disability • 1331 F Street, NW, Suite 850 • Washington, DC 20004