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DISABILITY POLICY: ARE WE MAKING PROGRESS?

Published online by Cambridge University Press:  21 December 2017

Shelley Burtt
Shelley Burtt*
Affiliation:
Camphill Foundation
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Abstract:

This essay criticizes recent trends in disability policy as restrictive of individual liberty and informed by too narrow a definition of what constitutes human flourishing. I defend the value of intentional community settings as one legitimate residential option for people with intellectual and developmental disabilities. Recent federal regulations (HCBS Final Rule) define intentional communities or disability-specific housing as presumptively institutional in nature, misunderstanding the positive, noninstitutional features of intentional, integrated communities created by and for people with developmental disabilities. In addition, current disability policy, despite its stated concern for the autonomy of people with intellectual and developmental disabilities, limits individual liberty by strictly defining the types of settings eligible for Medicaid waiver funding, expressly excluding agricultural communities, disability-specific residential settings, and intentional communities. A robust commitment to the autonomy of people receiving Medicaid waiver services would allow them to choose to direct their program dollars, recognizing that some individuals may choose a life in intentional community or with others facing similar challenges to themselves over an illusory “integration” into a wider society that remains too often unwelcoming and difficult to navigate.

Keywords

disabilitycommunityMedicaid waiverHome and Community Based ServicesHCBSautismintentional communityself-advocacydisability policyautonomychoicequality of lifeinclusionCamphill
Type
Research Article
Information
Social Philosophy and Policy , Volume 34 , Issue 2 , Winter 2017 , pp. 259 - 276
Copyright
Copyright © Social Philosophy and Policy Foundation 2017 

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References

1 McKnight, James, The Careless Society: Community and Its Counterfeits (New York: Basic Books, 1995), 115, 120Google Scholar as quoted in Pamela Cushing, “What Counts as Community? Alternative Approaches to Inclusion and Developmental Disability,” International Journal of Developmental Disabilities 61, no. 2 (2015): 87.

2 Robin Jackson, “Who Cares? The Impact of Ideology, Regulation and Marketisation on the Quality of Life of People with an Intellectual Disability” (London: Centre for Welfare Reform, 2015), 25. See also Roy Brown et al., “Quality of Life and Social Inclusion across the Lifespan: Challenges and Recommendations,” International Journal of Developmental Disabilities 61, no. 2 (2015): 93–100.

3 See, e.g., Bob Rhodes and Richard Davis, “Regulation: The Unintentional Destruction of Intentional Communities” (London: Centre for Welfare Reform, 2014); Maria Lyons, “Re-thinking Community Care: The Camphill Village Model, A Critical Appraisal,” (London: Centre for Welfare Reform, 2015) and Dunbar, Robin, “Realities of Social Life and Their Implications for Social Inclusion,” in Jackson, Robin and Lyons, Maria, eds., Community Care and Inclusion for People with an Intellectual Disability (Edinburgh: Floris Books, 2016)Google Scholar.

4 MacKanan, Daniel, Touching the World: Christian Communities Transforming Society (Collegeville, MN: Liturgical Press, 2007)Google Scholar. See also the essays in Jackson, Robin, ed., Discovering Camphill: New Perspectives, Research and Development (Edinburgh: Floris Books, 2011)Google Scholar.

5 See “Principles of the Camphill Movement,” Camphill Association of North America by-laws, document in the possession of the author.

6 Lamb, Gary, ed., Selected Passages from Writings and Lectures Related to the Fundamental Social Law (Loma Mar, CA: Institute for Social Renewal, 2007).Google Scholar

7 “Home and Community-Based Settings, Excluded Settings, and the Heightened Scrutiny Process,” Center for Medicare and Medicaid Services (2015), 5–7.

8 “Regulatory Requirements for Home and Community-Based Settings,” https://www.medicaid.gov/medicaid/hcbs/downloads/requirements-for-home-and-community-settings.pdf.

9 “Home and Community-Based Settings,” op. cit., 13.

10 Ibid., 17.

11 Cushing, “What Counts as Community?” 88.

12 Cushing, ibid., 87.

13 Ibid.

14 “Exploratory Questions to Assist States in Assessment of Residential Settings,” https://www.medicaid.gov/medicaid/hcbs/downloads/exploratory-questions-re-settings-characteristics.pdf.

15 https://www.medicaid.gov/medicaid/hcbs/downloads/requirements-for-home-and-community-settings.pdf.

16 Cushing, “What Counts as Community?” 88.

17 Julia Wolfson makes this case specifically in regard to Camphill communities in her dissertation, “Snakes and Ladders: Emergence of Deep Power in Transformational Change,” Australian National University, 2013; copy in the possession of the author.

18 See importantly, Feder Kittay, Eva, Love’s Labor: Essays on Women, Equality, and Dependency (New York: Routledge, 1999)Google Scholar and the works it inspired.

19 E.g., Pinker, Susan, The Village Effect: How Face-to-Face Contact Can Make Us Healthier and Happier (New York: Spiegel and Grau, 2014).Google Scholar

20 Arnell, Barbara, “Disability, Self Image and Modern Political Theory,” Political Theory 37, no. 2 (2009): 218–42 is a notable example of this move.CrossRefGoogle Scholar