Over the past year, MassHealth, the PCA Workforce Council and the PCA union (SEIU 1199) have been engaged in discussions that will soon lead to collective bargaining with the Commonwealth. These entities, so far, have not included input from the broader PCA consumer employer Community or PCAs.
Not surprisingly, there is agreement on one basic issue and that is that PCAs desperately need a significant increase in pay and benefits especially given the workforce crisis that has been lingering on since the COVID pandemic. In fact, many members from the disability community gathered in solidarity with PCAs and SEIU for better wages and benefits on September 1 followed up by a demand delivered to the governor.
However, there is a sharp difference of opinion between consumer employers and SEIU on how to get there. Digging deeper, there is ongoing discussion about having two tiered rates for PCAs based on the level of disability and complexity of ADLs of consumer employers. Thus, people with disabilities that have more significant needs such as light suctioning, tube feeding, bowel care etc., would be eligible to receive a higher rate of pay for their PCAs. Again, there is agreement, but the caveat is that the union wants to tie that higher rate increase to mandatory training for PCAs in order to qualify for the additional funding.
This approach undermines the basic premise of consumer control and shifts it to the demands of the union. What does this mean in a practical sense? If adopted, consumer employers would not be able to hire PCAs for the higher rate of pay if, determined eligible, unless they were “certified” as having had mandatory training. Consumer control dictates that the consumer employer hires, trains and, if necessary, fires PCAs. The proposal being discussed further medicalizes the already overly bureaucratic and medical PCA program that we have today.
This structural ableism is pervasive not only from the union but from the broader healthcare industrial complex. Significantly disabled consumer employers’ demand for control, choice and dignity of risk are pushed off to the side, and otherwise marginalized by both groups. Our lives and needs to survive in the community and live independently outside of nursing homes and other facilities are secondary to that of the vocal minority of PCAs that are union activists with a shared agenda, not our agenda, however.
Even more divisive is that this unfortunately pits two marginalized groups living in poverty against each other. Consumer employers must be poor to qualify for MassHealth and receive PCA services and the PCA workforce, is comprised of a majority of black and brown women also living in poverty from paycheck to paycheck. It's unconscionable and people's lives lie in the balance while this chess game for power and money plays out.
There is a way forward that is clear and simple. Embrace training for PCAs but don't make training mandatory for them to qualify for increased pay. The current advanced payment policy direction defies logic given the current workforce crisis and can only serve to restrict the availability of PCAs to consumer employers that have significant disabilities and are already confronted with no PCAs on a regular basis and result in a significantly lower quality of life and poor health.
We have an opportunity to beat back this power grab by attending upcoming listening sessions conducted by MassHealth on this issue. Stand up and say no to structural ableism and yes to optional training for PCAs!