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DHD 201 Disability Rights and Culture Week 12 Notes

by: Katie

DHD 201 Disability Rights and Culture Week 12 Notes DHD 201 Disability Rights and Culture

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These notes cover the 12th week of classes.
Disability Rights And Culture
Aly Patsavas
Class Notes
DHD, Disability, Right, Culture
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This 8 page Class Notes was uploaded by Katie on Friday April 8, 2016. The Class Notes belongs to DHD 201 Disability Rights and Culture at University of Illinois at Chicago taught by Aly Patsavas in Spring 2016. Since its upload, it has received 19 views. For similar materials see Disability Rights And Culture in Culture at University of Illinois at Chicago.

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Date Created: 04/08/16
DHD Week 12 Notes Individualizing vs. Politicizing ⇒ In Week Three, we discussed individualizing disability versus politicizing disability. ⇒ What is an example in Good Kings Bad Kings of disability being individualized (or framed as an individual problem)? ⇒ What is an example in Good Kings Bad Kings of disability being politicized (or the “problem” of disability being refocused on culture and society)? ⇒ Rights in Theory and Practice ⇒ In Weeks Four, Five, and Six, we discussed disability rights. ⇒ How did Good Kings Bad Kings demonstrate the difference between rights in theory and rights in practice? ⇒ Disability Culture ⇒ In Week Seven, we discussed various values of disability culture. ⇒ What disability cultural values were present in Good Kings Bad Kings? ⇒ How did disability cultural values play a role in community building and the fight for disability rights at the Illinois Learning and Life Skills Center? ⇒ Neoliberalism ⇒ In Week Ten, we discussed neoliberalism as the “economic, political, and cultural systems of beliefs characterized by privatization (of government resources, responsibility, etc.) and reduced government regulation (in economy, laws and policies). ⇒ What role does neoliberalism play in the justification of the Illinois Learning and Life Skills Center? o What is the Illinois Learning and Life Skills Center stated purpose? Is this accomplished? o Why are administrators invested in keeping the institution open? o How does this reflect the issues we have been discussing this week? ⇒ An Intersectional Approach to Nursing Homes ⇒ Today’s Focus ⇒ On Tuesday, we discussed various aspects of institutionalization. We briefly touched on historical aspects, key legislation, and the current status of institutionalization. ⇒ After watching the documentary “Not Home” we also began to critique some of the discourses and narratives around institutionalization (for example, who “belongs” in institutions, who is deserving and underserving of community life, etc.) ⇒ Today we will continue this work by examining nursing homes through an intersectional lens – these questions are controversial and do not have easy answers, but our goal is to challenge the current assumption that institutions are needed or an inevitable part of our societal future. ⇒ Through an Intersectional Lens ⇒ Feminist studies scholars, particularly black feminist scholars have forwarded the idea of intersectionality. ⇒ Arguing that we cannot view something like gender (or disability) as a single thing that impacts all people in the same, particularly when it intersects with other markers of identity – like race, class, ethnicity, sexuality, religion, or age ⇒ To view something through an intersectional lens means to attend to these differences and complexities of experience ⇒ Young People in Nursing Homes ⇒ Not Home and Good Kings Bad Kings focus on the issue of children and young people in nursing homes (and other institutional settings). ⇒ The number of young and middle aged people in nursing homes is growing. This is an important issue. ⇒ But, most critiques of this change claim “the problem” is young people in spaces “for” old people. There are few challenges to the role of nursing homes in the long-term care system. ⇒ Ageism in Disability Rights ⇒ Disability activism tends to overlook old people, which Jonson and Larsson (2009) present as a result of “inadvertent ageism” resulting from: o The conflation of old age and disability. o A focus on disability rights for disabled people of an “active” or “healthy” age. ⇒ Disability studies and disability activism’s “generational system” results in an emphasis on youth and adulthood and the roles associated with these stages of life (employment, education, reproduction, etc.) (Priestley, 2003, p. 156). ⇒ Centering the Most Marginalized ⇒ Dean Spade and Trickle Up Justice ⇒ Ensuring the needs of the most marginalized and vulnerable are met. ⇒ What would it mean to center poor old disabled women of color when we consider institutionalization? ⇒ As we will later discuss, this population is growing rapidly in nursing homes. ⇒ In this regard, nursing homes are increasingly becoming spaces of confinement for people who are oppressed in terms of race, gender, class, age, and disability. ⇒ Nursing Homes Statistics ⇒ Nursing Homes ⇒ The Nursing Home/Prison Analogy ⇒ Many people, including healthcare professionals, social commentators, nursing home residents, and scholars have drawn analogies between nursing homes and prisons. ⇒ Clinical psychologist Edward Scott (1997) discussed similarities such as lack of mental health training among staff, low quality food and accommodations, and the importance of outsider visitors for inmates. ⇒ Artist Alan E. Cober (2012) referred to people in nursing homes, prisons, and mental institutions as “out of sight” and therefore “the forgotten society”. ⇒ The Nursing Home/Prison Analogy ⇒ Blogger Keith Veronese (2012) satirically suggested that old people in need of residential care should commit crimes such as identity theft, check fraud, or counterfeiting, because federal prisons, which mostly house white-collar, upper class criminals, actually provide better care than many nursing homes. ⇒ Relatedly, there are also growing numbers of old, disabled people (including people with dementia) who are aging in prison due to conservative policies that mandated lengthy or lifetime sentences and removed opportunities for parole and early release. ⇒ This population requires nursing care that prisons often cannot adequately provide. ⇒ Total Institutions ⇒ In academic spheres, numerous scholars have observed nursing homes and prisons are similar because such sites of confinement are “total institutions” (Chapman, Carey, & Ben-Moshe, 2014; Ice, 2002; Stafford, 2003). ⇒ According to Goffman (1961), total institutions are “a place of residence and work where large numbers of like-situated individuals, cut off from the wider society for an appreciable period of time, together lead an enclosed, formally administered round of life” (p. xiii). ⇒ Characteristics of Total Institutions ⇒ According to Ritzer (2005), total institutions are characterized by features such as: o a breakdown in barriers of spaces to work, eat, and sleep; o bureaucratic and routinized management of human needs o separation between inmates and staff, and o inmate‘s experience of “mortification” or “a civil death that denies them adultlike autonomy or control over their fate” (p. 844). ⇒ Similar…But Not the Same ⇒ Analogies are powerful tools for analysis, but we still must recognize that prisons and nursing homes are not the same. However, if we use intersectional approaches, we can highlight their interrelated nature. ⇒ Ben-Moshe (2011): “It is the similarities and distinctions that are important to attend to, in terms of rationalizations, in terms of practices associated with them, and also in terms of the effects of the people who are incarcerated in diverse sites of confinement.” ⇒ For example, prison and nursing homes have very different outward rationalizations (punishment and safety of community versus care) but both are businesses that profit from the confinement of people. ⇒ Gender and Nursing Homes ⇒ The majority of nursing home residents are women (66.8%). ⇒ This is partially due to demographic factors, but also because gender norms mark caregiving as women’s responsibility. ⇒ Family Caregiver Alliance: 66% of caregivers are women and women spend as much as 50% more time caregiving. A consequence of intense caregiving is poorer mental and physical health outcomes, which may lead to institutionalization. ⇒ 50% of elders who have a long-term care need but not family available to them are in nursing homes. ⇒ Nursing homes warehouse women who have spent their lives caring for others but now have no one to care for them. ⇒ Race/Ethnicity in Nursing Homes ⇒ In addition to gender disparities in nursing homes, low-income people of color are also increasingly being placed in nursing homes. ⇒ In the 1970s and 1980s, nursing home residents were predominately white and middle-class. Scholars and activists voiced concerns over low-income people and people of color’s access to nursing home care (Moss & Halamandaris, 1977). ⇒ However, deinstitutionalization and the growing emphasis on elders “aging in place” resulted in major transformations. ⇒ As we discussed Tuesday, there has been a shift (in theory and somewhat in practice) to home and community based alternatives. ⇒ Unequal Access ⇒ Feng et al. (2011): “Not only are home and community-based alternatives less expensive than institutional care, but they are also overwhelmingly preferred by older adults with disabilities, who want to live independently in their homes and communities as long as possible” (p. 1359). ⇒ However, the rebalancing of long term care has resulted in a shift in nursing home demographics, indicating that home and community-based alternatives are not equally available to all aging people. ⇒ While white people still account for the majority of nursing home residents, new demographic trends suggest the compositions of nursing homes are changing. ⇒ Changing Institutional Demographics ⇒ Between 1999 and 2008, the number of racial and ethnic minorities living in nursing homes increased dramatically, while the number of white people decreased. ⇒ Disparities in Institutionalization ⇒ While the rapid growth of old minority populations is a factor in these changes, the number of racial and ethnic minorities in nursing homes is increasing more rapidly than the aged minority population overall. ⇒ Hence, more and more old White middle class people are remaining in their homes and communities as they age, while growing numbers of low-income people of color are confined in nursing homes. ⇒ Furthermore, when White elders do enter institutional care, they are able to access higher quality care. Additionally, when White people are placed in nursing homes, they are able to access racially homogenous nursing homes that provide a higher quality of care. ⇒ Changing Pathways to Nursing Home Care ⇒ As Feng et al. (2011) lamented, “When minority elders do use nursing homes, they are more likely to end up in lower-quality facilities characterized by fewer resources, greater reliance on Medicaid, poorer service, and worse care available in nursing homes in more affluent communities” (p. 1363). ⇒ Thus, a lack of access to community-based alternatives or assisted living facilities and racially segregated nursing homes create unequal forms of care, particularly for poor old disabled women of color. ⇒ The Influence of Neoliberalism ⇒ Capitalism and neoliberalism have created an economic and cultural context in which social “services” are privatized and driven by profit rather than meeting people’s needs. ⇒ The nursing home industry’s demographics are changing in part because it’s increasingly profitable to institutionalize poor minority people, particularly as growing numbers of White, economically advantaged people are able to opt out of nursing homes and use HCBS. ⇒ A bed empty is money lost, and the bodies of poor disabled people, increasingly poor disabled people of color, are transformed into commodities for the nursing home industry – bodies to be cared for, contained, and controlled. ⇒ Back to Good Kings Bad Kings ⇒ How does the story told from Michelle Volkman’s point of view illustrate this phenomenon of bodies as commodities? ⇒ Personal Responsibility and Blame Discourses ⇒ Neoliberalism also justifies institutionalization by asserting that institutionalization is the result of personal or individual weaknesses or failures. ⇒ Neoliberalism forwards an ideology of personal responsibility, self-reliance, and independence. Thus, issues that influence incarceration in prisons or nursing homes, such as poverty or disability, are increasingly understood to be individual—rather than social—issues. ⇒ Additionally, the successful aging and healthy aging movements have furthered these neoliberal discourses by defining successful aging as aging without illness or disability, and claiming that aging “well” is an individual responsibility (Rowe and Kahn, 1998). ⇒ What Blame Discourses Also Do ⇒ The discourses based on “blame” also serve to relieve society of any duty or accountability to provide community-based care. ⇒ They also result in a lack of empathy for elders struggling to avoid institutionalization. ⇒ Portacolone highlighted unsympathetic comments on a San Francisco Chronicle article about elders struggling to live alone and avoid institutionalization. ⇒ As one commenter wrote, “There is no way we should be subsidizing the elderly to live in the City. They’ve had their entire lives to save for this day in their lives….It’s unpatriotic and unAmerican (sic) to expect the taxpayer to make up the difference” (as cited in Portacolone, 2013, p. 172). ⇒ The End Result ⇒ There are increasing numbers of disabled, old, poor people of color who require support and care, medically and socially. ⇒ Rather than emphasize interdependence or consider how to create equal access to home and community- based care, our society is currently using imprisonment in nursing homes as the solution to these growing numbers of disabled elders. ⇒ What Do We Do? ⇒ Abolition ⇒ Some people claim that institutions can never be spaces in which people can survive, thrive, and have agency over their lives, and have called for an end to all institutions. ⇒ This is referred to as “abolition.” ⇒ Also used in reference to prisons and various other forms of institutions. ⇒ Community living is the most often proposed alternative to institutionalization. o Supported through the provision of home and community-based services. ⇒ Home and Community-Based Services ⇒ Examples of Home and Community-Based Services: o Personal Care Assistants, Home Health Aides, Home Nursing o Community Access to Therapies, Support Groups, etc. o Assistance with ADLs and IADLs o Caregiver Support (Respite Care, Payment for Care) ⇒ There are also examples of progressive community-based options for people with psychiatric disabilities. o Soteria: communally run, no psychiatric meds, “treatment” includes activities like gardening, yoga, art, etc. ⇒ But what about cases in which people with disabilities cannot receive home and community based supports? ⇒ Can We Make Institutions Better? ⇒ There are limits to abolitionist politics that call for an end to all forms of institutionalization and incarceration (though that doesn’t mean we can’t work toward this goal). ⇒ One of the limits is that our current structures (related to community services, supports, and funding) cannot realistically provide care for all disabled people in the community. (For instance, elders with complex health needs who are geographically and culturally segregated.) ⇒ Given the fact that our current structures cannot support everyone in the community, we should ask the question: can we make institutions (like nursing homes) more livable places? ⇒ Can We Make Institutions Better? ⇒ Some scholars in gerontology argue that we can – and should – make institutions better. ⇒ Chivers (2016): “The fact remains that many contemporary seniors will require institutional care…and [some] may actually benefit from new living quarters in late life.” ⇒ Example: Bill Thomas and The Eden Alternative o ⇒ Alternatives to Institutions ⇒ Example: People with Dementia ⇒ In the United States, many people with moderate or severe dementia are institutionalized in special locked wards of nursing homes. ⇒ Alternative: Dementia Villages o ⇒ How can we – students, scholars, activists, policymakers – work toward imagining a society in which we do not use imprisonment as a response to people who need care, support, and inclusion? ⇒ Institutionalization ⇒ Is Institutionalization History? ⇒ As of 2012 (Residential Information Systems Project): ⇒ The Reality ⇒ “Institutional life, whether in a prison, hospital, mental institution, nursing home, group home, or segregated ‘school,’ has been the reality, not the exception, for many disabled people” (p. 17). ⇒ The Disability Rights and Deinstitutionalization Movements have made progress, but institutionalization is not a part of the past. ⇒ What Is Institutionalization? ⇒ The National Council on Disability (2012) defined “institutional settings as housing situations in which more than 4 people with I/DD” live in a single home/space. ⇒ Self Advocates Becoming Empowered (SABE) (2012): “Any place, facility, or program where people don’t have control over their lives.” o Critiques post-institutionalization services. o Doesn’t consider non-institutional contexts where people lack control (e.g., families). ⇒ Thinking Broadly ⇒ Chapman, Carey, and Ben-Moshe (2014) suggest that institutionalization may be spaces in which there are practices of power and domination, as well as resistance and negotiation, between consumers, clients, and inmates and staff. ⇒ They call on us to think about institutionalization and incarceration broadly. ⇒ An Intersectional Perspective ⇒ Ben-Moshe (2014): “When thinking about disability and incarceration from an intersectional perspective…, it is important to think about incarceration as a variety of locales that disabled and/or non-normative bodies and minds are being swept into, such as psychiatric hospitals, residential institutions for those with intellectual and developmental disabilities, and prisons” (p. 255). ⇒ Disability Rights and Deinstitutionalization Legislation ⇒ Elizabeth Packard in Illinois ⇒ In 1860, Elizabeth Packard was institutionalized in the Jackonville Insane Asylum in Illinois after being declared insane by her husband. ⇒ After 3 years, she was released and fought to be declared “sane” (Packard v. Packard). ⇒ Illinois later passed the “Bill for the Protection of Personal Liberty,” which guaranteed people accused of insanity (including wives) the right to a public hearing before being committed involuntarily. ⇒ A Different Name for the Same Thing ⇒ Elizabeth became an early advocate for deinstitutionalization. She established the Anti-Insane Asylum Society and published several books. ⇒ Several other States passed bills similar to Illinois, but overall it has very little impact on institutionalization as a whole. ⇒ Ironically, the very same asylum in which Elizabeth was institutionalized later became the Jacksonville Developmental Center, which warehoused people with I/DD until 2012. ⇒ Why Deinstitutionalization Happened? ⇒ Unlike some other Disability Rights Movement victories, deinstitutionalization did not happen initially due to sweeping rights-based legislation. ⇒ In 1965, Medicaid passed. By excluded funding for state psychiatric hospitals and other “institutions for the treatment of mental diseases,” the Federal government tried to shift costs to the States. ⇒ This incentivized states to transfer massive numbers of people to general hospitals, nursing homes, and the community. ⇒ Why Deinstitutionalization Happened? ⇒ Many critics of deinstitutionalization have noted that the process failed to create new supports and services. ⇒ The goal was saving money – not meeting the needs of disabled people. ⇒ The ADA (1990), and later, the Olmstead Decision (1999), claimed that people with disabilities had the right to live in the least restrictive setting possible and have the supports and services they need to live in the community. ⇒ Theory vs. Practice ⇒ Post ADA Case ⇒ Plaintiffs: Lois Curtis and Elaine Wilson, two women with cognitive and psychiatric disabilities institutionalized in Georgia. ⇒ The Olmstead Case ⇒ Both women’s doctors determined that their needs could be met in the community, but Ms. Wilson was not released until 1 year later and Ms. Curtis until 3 years later. ⇒ Both women sued, arguing the State’s failure to provide community-based services, as recommended by their medical professionals, violated the ADA. ⇒ The Olmstead Decision ⇒ June 22, 1999: The U.S. Supreme Court ruled in the case of Olmstead v. L.C. that unjustified segregation of persons with disabilities constitutes discrimination in violation of Title II of the Americans with Disabilities Act. ⇒ The Court’s Ruling ⇒ Public entities must provide community-based services to persons with disabilities when: o Such services are appropriate; o The affected persons do not oppose community-based treatment; and o Community-based services can be reasonably accommodated, taking into account the resources available to the public entities and the needs of others who are receiving disability services from the entity. ⇒ Setting of Care/Services ⇒ The Olmstead decision focused on the setting in which people with disabilities received health care and related services. ⇒ Illegal discrimination occurred because “in order to receive needed medical services, persons with mental disabilities must, because of those disabilities, relinquish participation in community life they could enjoy given reasonable accommodations, while the persons without mental disabilities can receive the medical services they need without similar sacrifice.” ⇒ Olmstead in the Present ⇒ The impact of Olmstead grew significantly in 2009 when the U.S. Justice Department made Olmstead a priority of its Civil Rights Decision and began to enforce the Supreme Court mandate. ⇒ From 2009-2012, DOJ was involved in 40+ Olmstead cases in 25 states. ⇒ “Still, fifteen years after Olmstead, no state could credibly make the case that it is fully in compliance with Olmstead.” – Olmstead Rights ⇒ Olmstead and Medicaid ⇒ Medicaid plays a key role in community integration as the major payer for long-term services and supports (LTSS). ⇒ This includes home and community-based services (HCBS) on which people with disabilities rely to live independently in the community. ⇒ Olmstead and Medicaid ⇒ Historically, Medicaid has a structural bias toward institutional care because State Medicaid programs must cover nursing facilities, whereas HCBS are provided at State option. ⇒ Currently, most HCBS are provided through waivers. ⇒ Unlike Medicaid state plan benefits, which must be available to all beneficiaries as medically necessary, waivers can be capped, resulting in waiting lists when the number of people receiving services exceeds the amount of available funding. ⇒ Olmstead and Medicaid ⇒ Over the last several decades, States have been working to rebalance their long-term care systems by devoting more money to HCBS. ⇒ The majority is still spent on institutional care, but HCBS funding is increasing. ⇒ Viewing of Excerpt of the Documentary “Not Home” ⇒ ⇒ Reflections on “Not Home” ⇒ What are the primary message(s) of Not Home? What is the documentary advocating for? ⇒ Does this documentary align better with a disability rights approach, or a disability justice approach? Or both? Why? ⇒ Who is focused on and who is left out of Not Home’s message? ⇒ Who “belongs” in the community and who “belongs” in nursing homes? ⇒ In Illinois… ⇒ Today State Legislators are hearing about two bills that are an attempt to expand institutional services using money for community-based services. ⇒ House Bill (HB) 6304 and Senate Bill (SB) 2610 seek to create a new licensure system for a select few service providers that operate large, segregated campus facilities for people with developmental disabilities. ⇒ From Access Living ⇒ These so-called “continuum of care” facilities would operate under a single license that would enable them to move individuals in and out of different types/levels of services at their discretion. The services would be primarily provided “on campus”. While CILA services may be included, they must be provided in close proximity to the campus. ⇒ Cycling people with developmental disabilities from one type or level of service to another on or near a large, segregated campus facility does not provide community integration. ⇒ For Thursday… ⇒ Discussion of Good Kings Bad Kings ⇒ Further Examination of Intersectional Approaches to Understanding Institutionalization ⇒ Exploration of Alternatives to Institutionalization


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