Despite our common goal to get PCAs better wages and benefits etc. the disability community and the union often are at odds with each other over issues primarily related to consumer control of the program. The union has as its mission the goal of organizing workers to fight for their collective agenda and using dues to pay for salaries, infrastructure and political lobbying. People with disabilities who started the program certainly want their workers to get better salaries and benefits and have fought for years toward this end well before the union became involved. As the PCA program grew, the union saw an opportunity to organize and in the early 2000's they to filed legislation creating a union without any input from the Massachusetts disability community with no provisions for consumer representation let alone control. This is when the distrust between the two groups began. The disability community eventually found out and killed it in the legislature before it could go forward. This led to a sit down with union organizers and ILC directors to address the problem and seek common ground. This process went on for a year or more; each side finally agreed on a cooperative model that later became the PCA Workforce Council that we have today.
It operates with the Commonwealth as the employer of record for PCAs and can bargain with the union through arbitration for wages, benefits, etc. PCA users, for the first time in over 30 years are not really involved in fighting for cost increases for PCAs like we have in the past. The union has assumed this role but there is a cost; we've surrendered control over this process, which is far-reaching, and the results have not always been positive. For instance, a year ago the union again filed legislation without the disability community’s involvement that required a mandatory PCA Orientation without the option for a PCA user to provide the training, which has always been the practice. Consumer control is key in this area and the legislation completely ignored it. Again, the disability community learned about this union action and killed it in the Senate before it was enacted. The level of distrust was dialed up a notch. This time the PCA Workforce Council, acting on behalf of the broader disability community conceded to the union and, with a token amount of consumer input, created a new state sanctioned mandatory PCA Orientation. The so-called PCA user option allows for people with disabilities to use a predetermined curriculum to train their own PCAs as an attempt to satisfy the need for consumer control but, again, this was done in a virtual vacuum and the three-hour mandatory curriculum is a heavy medical model that accomplishes nothing other than to give the union a platform to promote themselves. Other than that, there is nothing of any real value and some find it offensive. Little by little we are losing control of our own program to the union and now the state through the Workforce Council.
The struggle rages nationally as well. In an attempt to get overtime pay for PCAs who work more than 40 hours per week, which on its face is a fair proposition, the national SEIU worked with the federal Department of Labor to create a new rule that would require this practice in every state without any new resources. The disability community opposed this rule and fought to have it vacated because the reality is that absent any new money, state Medicaid agencies would have no other option than to put a cap on the number of PCA hours a person with a disability needs to live independently in the community. This will have devastating circumstances and many people will be forced back into institutions as a result. Again, there's the struggle between the disability community and the union.
The union won't come right out and say it but they paint PCA users as selfish and not interested in workers making a living wage but that's far from the truth. Remember, we need PCAs every day of our lives in order to live independently. No one knows PCAs better and more intimately than we do. We are not hospitals and nursing homes and other large corporations trying to screw workers out of a livelihood. In fact, in Massachusetts, PCAs are paid better wages than Certified Nursing Assistants who work in hospitals and other skilled nursing facilities and that's largely due to the enormous amount of work that was done over decades by PCAs and PCA users working together long before the union ever thought of getting involved.
I've been a blue-collar Democrat all my life and have worked with unions to support political candidates, fight for better working conditions, close down institutions and yes, get better wages for PCAs. I've come to realize that we must coexist but we have to be vigilant about how we work, communicate and respect each other. Onward!