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Disability Rights and Worker Rights in the New Home Care Rule: A Social Justice Perspective

Guest Author
January 21, 2015
Recent regulatory changes from the Department of Labor and litigation challenging them have sparked increased discussion on the role of home care workers and personal assistants, an important workforce that helps meet the needs of many older and disabled Americans. These decisions have implications for compensation of workers, access to services, and the independence of people with disabilities and older adults and have led to passionate debate among workers groups, disability rights advocates and those working in health policy.

As part of this ongoing discussion, Health & Medicine is pleased to share a guest blog post from Board Member Tom Wilson. In addition to his work with Health & Medicine, Wilson serves as a health care community organizer at Access Living, a Chicago-based organization committed to the independence and inclusion of people with disabilities.


On December 22, 2014 U.S. District Court Judge Richard Leon vacated the third party regulations amended by the Home Care Final Rule. On January 14, 2015 the District Court vacated the Final Rule’s narrowed definition of “companionship services” that are exempt from overtime compensation  in a new opinion in Home Care Association of America v. Weil.

Our society has seen several decades of attacks on unions and working people. The percentage of the private sector workforce in unions has shrunk to 6.7% in the U.S.  Many of the new jobs including home care jobs being created in this country tend toward very low wages. There is a need in our service sector for jobs that pay enough to support a family, as many of these workers are raising children and caring for families.

The court order vacating the Department of Labor regulations mandating overtime wages and minimum wages for home care workers falls into the ongoing attacks on the living standards of workers and contributes to our growing economic inequality. The judge ruled that these rules could not be done administratively but must be done legislatively. The Department of Labor obviously disagrees and may appeal.

Home Care has been a growing area of employment for several decades. It has been shaped by social and demographic changes and the disability rights movement.
The responsibility for caring for incapacitated seniors and people with disabilities that prevent self-care, has traditionally been a family responsibility. For the majority of care this is still true and many families work hard to take care of disabled family members.  As families have had to change and it has become common for a family to depend on multiple wage earners, there has been an impact on family caregiving. For the last 50 years when families were unable to provide this essential care, the solution often involved institutionalization including placement in nursing homes.

The disability rights movement understood that this way of “caring” for people had been a disaster for people with disabilities.  Many of the institutions had a record of serious abuse and neglect. People not only got bad care, but they were isolated from society, had their rights infringed upon and were reduced to dependents without choices and opportunities.

The disability community has fought for the right to be assisted in their own homes with caregivers chosen by them and for programs to pay for this valuable work that keeps them independent and active members of the community.  These services have been seen as a civil right by people with disabilities. These rights were expressed in the Americans with Disabilities Act and upheld in the Supreme Court’s Olmstead decision.

The disability community has fought for funding so people can live full lives outside institutions, with the support of paid home care workers. In a period of austerity it has been a struggle to sustain adequate funding. In some states, the home care workers have organized and are represented by unions, often SEIU, as they are here in Illinois.

These workers were excluded from typical worker rights under what are archaic federal laws about home care.  SEIU and other allies were able to get the U.S. Department of Labor to update those rules.

However some people opposed these changes. Some of the opposition came from Home Care agencies that make money by keeping wages low.  Some people in the disability community also opposed these rules because they feared cuts in hours of service for people with disabilities and seniors due to the difficulty in increasing state budgets for home care.  They thought higher wages meant fewer hours. They saw a likely scenario that some states would ban overtime hours, requiring some people with disabilities to replace their trusted worker for hours over the cap. This could mean even less wages for some workers, but the other concern was that people with disabilities want caregivers that they trust and they know well.  It is difficult to find and hire other workers that you trust.

My view as a supporter of social justice is that disability rights and worker rights are both important. It is crucial that people who use home care services and people who do home care need to unite to fight for worker rights like overtime pay, sick days and health benefits, at least until we can win universal single payer health care.  Worker rights need to be defended by all of us. We need to make sure that states respect disability rights and that they treat the workers who care for people with disabilities as valuable workers. We need to make our politicians see that people with disabilities deserve well paid workers, that people with disabilities deserve quality home services and that people with disabilities deserve to be treated as valuable members of society.