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Evolving Medicaid waiver provisions have directly affected the PAS workforce in two major ways.

Worldwide Shortage of Healthcare Workers Increasing

Starting in , under Section j waivers, states could pay legally responsible relatives as PAS providers. In states choosing this option, these changes expanded the pool of potential PAS workers and compensated family caregivers, who otherwise might forgo paid employment to assist their relative. By the mids roiling social and political forces had coalesced to contest the medical model. Roberts, who was quadriplegic from childhood polio, became a major leader of this transformative movement. The University of California Berkeley initially rejected his undergraduate application, arguing that iron lungs were too large for dormitory rooms.

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When Roberts ultimately matriculated at Berkeley, he advocated for PAS, peer counseling, and other services—organized and run by people with disability—to support their living on campus and participating in university life. Roberts and his disability advocate peers founded the independent living movement based on principles of self-determination, consumer direction, comprehensive service supports, and community integration. These principles were codified in the amendments to the Rehabilitation Act see below , which established centers for independent living nationwide that were run by and for people with disability appendix exhibit B.

This independent living philosophy transformed views of disability. The Rehabilitation Act of amended vocational rehabilitation policies that had existed for fifty years. Motivated by disability rights advocates, the law went much further, extending civil rights protections to this population. Section of the act became the first federal statute to prohibit disability-based discrimination—specifically in federal programs, programs receiving federal dollars, federal employment, and employment by federal contractors appendix exhibit B. Although their health care professionals felt that Curtis and Wilson could live with supports in the community, Georgia kept them in the hospital once trying to discharge Wilson to a homeless shelter, a move that she contested.

Why Do We Rely on Women of Color to Take Care of People at Home?

Although Olmstead confirmed the civil rights of people with disability to live in their homes and communities, it could not ensure the financial resources to make that happen. The Supreme Court cannot compel state Medicaid programs to spend specified amounts on home-based services such as PAS.

The public face of the s Great Depression was largely unemployed men. Nonetheless, poor women who had subsisted through domestic labor also suffered widespread job losses. Roosevelt sought broad policy changes to increase low wages. He faced strong headwinds from industry and the Supreme Court, which issued multiple antilabor rulings from the s through the mids.

After his landslide victory, President Roosevelt; his labor secretary, Frances Perkins; and others worked to draft legislation that could survive constitutional challenges and overcome staunch opposition from Southern legislators, who fought efforts to extend labor protections to domestic and agricultural workers.

Because domestic labor falls outside interstate commerce, decades elapsed before domestic workers finally attained wage and work hour protections with the FLSA amendments. Legislators excluded companionship services from FLSA provisions based on notions that these workers provide social supports to older people with modest incomes. The rules interpreted the companionship exemption broadly, applying it to nearly all workers who provided PAS, social support, and other household services for older people and those with disabilities—as well as to home health and PAS workers who were paid privately or publicly through Medicaid.

Another several decades ensued with efforts to counteract consequences of the companionship exemption and bolster the PAS workforce. Workers themselves formed groups such as Domestic Workers United in New York to gain labor protections from states. Nevertheless, despite important local victories, home care workers remained exempt from FLSA protections into the new century. A lawsuit filed in by Evelyn Coke, a New York City home care worker, finally precipitated substantive change.

A Jamaican-born single mother of five, Coke had worked many years for a Queens home care agency. Starting early each morning, she bathed and dressed her clients, prepared meals for them, helped them eat, and assisted them with medications. In Coke sued her home care agency for unpaid wages and questioned whether Congress had intended the Department of Labor to exempt home care workers employed by agencies.

How Home Care Workers Came Out of the Shadows

The Supreme Court ruling again galvanized advocates for home care workers to exert pressure on Congress to overturn the companionship exemption. In President Obama asked the Department of Labor to extend the FLSA wage and work hour protections to home care workers, and the department initiated lengthy public rule making.

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Although important consumer groups applauded this FLSA change, others did not. That is, the Department of Labor was legally bound to consider the argument of disability advocates that including homecare workers in minimum wage and overtime protections may increase rates of institutionalization. Furthermore, states that had already implemented wage and work hour reforms for home care workers did not demonstrate higher institutionalization rates.

Another legal challenge ensued, from an association of home care agencies. The new FLSA regulations, giving home care workers wage and work hour protections, could finally take effect. Preliminary evidence from the field suggests that effects on workers have been mixed, however. For example, many employers have introduced new scheduling practices to eliminate or reduce overtime. This means that workers must piece together hours with different employers and are still working overtime without additional compensation.

However, in recent years some home care workers have resisted unions, especially requirements to pay dues. Pamela J. Harris and other home care workers supporting participants in the Illinois Department of Human Services program for people with disability filed suit in against Gov.

Harris v. Justice Samuel A. Alito wrote the opinion for the conservative majority, which ruled that requiring home care workers to pay dues to the union violated their First Amendment rights. American Federation of State, County, and Municipal Employees, Council 31 22 extended First Amendment protections to all public-sector employees who choose not to pay union dues.

Caring for America: Home Health Workers in the – Relations industrielles – Érudit

Anecdotal reports suggest that the Harris v. Quinn ruling motivated unions to make greater grassroots efforts to prove their value to home care workers. Policies that affect consumers who require paid ADL assistance have increasingly supported their efforts to live at home.

As described above, in recent decades policies that affect consumers who require paid ADL assistance have increasingly supported their efforts to live at home. Initiatives included expanding Medicaid coverage of paid personal assistance services in states choosing that option and civil rights protections for community integration under Olmstead for public programs. However, from the Fair Labor Standards Act of to the final Supreme Court decision about companionship exemptions, federal labor laws failed to provide wage and work hour protections to home care workers.

Two recent Supreme Court decisions that ended requirements for workers to pay membership dues raise questions about the future ability of labor unions to negotiate higher wages for PAS workers.


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Thus, while consumer-oriented policies heightened demand for these services, labor policies have hampered efforts to build the workforce. The extent of policy mismatches extends well beyond those mentioned in this brief article. For instance, millions of Americans need paid PAS support, but because of even modest personal resources, they do not qualify for Medicaid. Wealthier private-pay consumers can offer hourly wages above rates of public payers. With low Medicaid payment rates, this leaves PAS employers consumers or agencies that receive Medicaid reimbursement struggling to compete for workers with individual consumers who can offer slightly higher wages although not necessarily other employment protections.

Anecdotal reports suggest that an impending Medicaid policy—the implementation of electronic visit verification for all home-based visits—could stifle PAS workforce recruitment and retention. But, Boris and Klein demonstrate, they faced a newly militant welfare rights movement that emphasized that poor people deserved dignity along with a living wage.

The Rolling Quads argued [End Page ] that consumers should be able to choose their home care providers and be free to employ friends to do the work. In so doing, they bolstered an image of home care as unskilled labor and helped lay the groundwork for an independent contractor model that made it more difficult for home aides to secure Project MUSE promotes the creation and dissemination of essential humanities and social science resources through collaboration with libraries, publishers, and scholars worldwide.

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Caring for America : home health workers in the shadow of the welfare state

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