The disability rights movement frequently uses civil and human rights analogies to bolster its argument that people with disabilities are battling power structures similar to those that historically blocked the equal participation of women, people of color and gays/lesbians.
One topic that has been ignored in most of the country is the symbiotic relationship between the worker rights/union movement and the disability community’s struggle to fight unnecessary institutionalization and live in the community. The traditional “progressive” movement has ignored this and many other issues critical to the integration of people with disabilities into our communities.
Few disability organizations, and fewer people with disabilities, belong to, interact with, or have any understanding of the labor movement and its history. Many disabled people, when asked, will express a close relationship with their attendant. They want their attendant to be paid well. Good wages and benefits mean less turnover and improved quality. However, it is very unlikely that this relationship is seen in the context of worker rights and the right of unions to organize. This intersection of self-interests has for too long been ignored to the detriment of both groups.
The growth of consumer-directed services in many states, and the rebuilding of San Francisco’s Laguna Honda, the nation’s largest nursing home, has brought this issue to the forefront. Complicating things, the union representation of workers in nursing homes and intermediate care facilities for the mentally retarded (ICF-MR) has led to suspicion about what the true intentions of unions are. This institutional representation by unions like Service Employees International Union (SEIU) and the American Federation of State, County and Municipal Employees (AFSCME), has resulted in “progressive” disability advocates as well as union members, taking positions that have made both feel uncomfortable. This has led to confrontation and distrust.
“What is the position of the union movement in relation to a disabled person’s ‘right’ to live and receive services in the community?,” has become a question asked more and more frequently around the country. Union spokespersons have historically rationalized institutions as being for our “safety” and that “these people” (us) need to be institutionalized. Disability advocates have in turn talked about SEIU and AFSCME being “jailers” of people with disabilities, concerned only about money and not the civil rights of the people locked away in nursing homes and public institutions.
The irony of the debate is that even while they were representing low-income nursing home workers, SEIU was simultaneously organizing home-care workers in states like; California, Washington, Oregon, Illinois, Pennsylvania, New York, Wisconsin, Michigan, and Massachusetts. SEIU saw more than a decade ago that the number of home care workers was quickly expanding and that these workers were underpaid and often without healthcare and other benefits. They saw this as an opportunity for recruiting and organizing new union members.
AFSCME has also begun to move into the arena of home care organizing, although at a much slower rate than SEIU. In fact, AFSCME has actually been the flashpoint of the concerns the disability community has had about unions.
Historically the fight for de-institutionalization has focused primarily on people with cognitive/mental disabilities warehoused in publicly-funded state institutions. The public service workers in these institutions were relatively well paid with benefits. As a result, public employee unions, like AFSCME, have fought against, and in many states have succeeded in stopping or slowing, any movement to close or downsize these facilities. The assumption has been that community service jobs are low pay with no benefits. Though disability advocates have proposed portability of benefits as a solution to this problem, AFSCME has continued to oppose closure of facilities.
The deinstitutionalization that has occurred over the last 30 years has too often moved people from large facilities to smaller facilities or group homes. It is only in recent years that the community service system has begun to focus more on an individual having a personal attendant in their own homes.
The 1999 Supreme Court’s Olmstead decision broadened the deinstitutionalization movement to include people in nursing homes and other institutions. It also gave new impetus for disability advocates to aggressively fight unnecessary institutionalization before someone had been deprived of their home in the community. In addition the $1.75 billion federal Money Follows the Person Demonstration has intensified the “rebalancing” efforts in every state around their institutionally biased long-term care systems.
The independent living/self-determination model of personal attendant services has historically defined consumer control as “give me the money and I will hire my own attendant.” Many community organizations have become fiscal intermediaries to assist the consumer in the payroll requirements, but the control still remains with the person with the disability. This definition has challenged those in the union movement to figure out how they could organize these community workers without making each person with a disability a bargaining entity. The California solution, one of the first in the country, was to create Public Authorities which act as bargaining agents while allowing the individual to exert consumer control. To date this has been the primary model promoted by the union movement. Advocates in the disability community believe however, that one model of organizing community workers will not address the various consumer directed delivery options that now exist throughout the country.
There are no simple answers to the questions. However there needs to be an open discussion to see where our common self-interests intersect. The best solutions will be found when the disability community is at the table with the unions negotiating as equals.
SEIU has endorsed the Community Choice Act and is attempting to organize home-care workers throughout the country. AFSCME is making efforts to outreach and find a way to support the Community Choice Act. They, too, are moving into home care organizing. The AFL-CIO and Choose to Win, working with the disability community, would be a powerful force in passing a reform agenda that includes:
1) transitioning from the institutionally biased long-term care system to one that prioritizes the community; and,
2) increasing the wages and benefits for the workforce that will be necessary to provide these needed community services.
Endorsement of, and aggressively working for the passage of the Community Choice Act in 2009, and promoting self-determination/consumer control principles, would go a long way toward changing our long-term care system that for too long has institutionalized us against our will, and exploited community attendants.