From Self-Advocacy to Community Leadership: A Story of Impact

By Justin Graceffa

Since October 2022, I have been a member of the Massachusetts PCA Council. This is an advisory board made up mostly of consumer employers, who are persons in the Massachusetts PCA program who receive home care services and is also in charge of hiring, directing, and managing their own caregivers.

Our role is to help guide policy, improve training, and push for improvements to the PCA program. We work closely with the PCA union, and MassHealth. We also participate in collective bargaining for the PCA contract with the state. This is the most important role of the PCA Council. The contract sets the rules, benefits for PCAs, pay rates, and raises over time. It also gives consumer-employers a voice and the chance to have real influence with decision-makers.

My journey with advocacy and the PCA Workforce Council started after I had a difficult experience when I moved from living with my family to living on my own. For almost a year, I struggled to find a good, consistent PCA. During that time, I experienced a lot of mistreatment. PCA’s would cancel at the last minute or just not show up at all. Some stole from me, others were verbally abusive and threatened physical violence against me. One called MassHealth on me, another called the police. I tried to report what was happening, but I did not feel supported by my PCM, Tempus Unlimited, or the police. Eventually, I had had enough and moved back home to an environment where I felt more supported. Soon after this move I learned about the PCA Council, I saw it as a chance to use my voice, share my experience, and advocate for change.

When I first started, I felt intimidated. I didn’t know anyone, and many members had years of experience. I had to learn the topics being discussed and understand how decisions are made. Over time, that changed. I started to recognize people, follow the conversations, and find my place.

A big turning point for me was the 2023 collective bargaining negotiations between the PCA Union and MassHealth. The PCA Council worked alongside MassHealth, but our priorities did not always match. This led to a lot of disagreement and tension during our discussions, and at one point, it even delayed the negotiations.

Even with those challenges, I stayed calm and focused. I shared my personal experiences to help others better understand the issues and find common ground. Over time, I became more confident and started to make a real impact. This helped me build a stronger voice on both the negotiating team and the Council going forward.

After those negotiations, I earned the trust of the other council members and was elected Vice Chair in April 2024. This is the highest-ranking role for a consumer employer on the Council. The Chair is the Undersecretary of Health and Human Services, who connects directly to the Governor’s office.

As Vice Chair, my role is to lead on consumer employer priorities and concerns. I bring forward issues — whether they are my own, from other council members, or from consumer employers in the community — to the PCA Union, MassHealth, and the Executive Office of Health and Human Services in Massachusetts.

Since then, I’ve made progress on some of my priorities. One focus has been creating new training and strategy materials to help consumer employers better manage their PCA services.

This idea started when I began working with the PCA union as a facilitator in their training and education fund. While teaching new PCAs about the program’s rules and regulations, I realized that even after being in the program for over 16 years, there was a lot I had never been taught.

Because of that, I took the initiative to develop a training program for consumer employers. I presented one version at the SCI Boston Saturday morning education series in October 2025. It was a very rewarding experience, and I hope to build on it in the future. A more comprehensive version of the rules and regulations will also be released by the council soon.

Another, and my biggest aspiration, is leading a new workgroup focused on preventing abuse and neglect of consumer employers. This work is just beginning, and often takes a long time, but I’m hopeful it will lead to real changes like new rules, policies, and protections for PCAs and consumers.

I truly enjoy the work I do on the council. It’s very rewarding, especially when I see real changes happen because of the work we’ve done. Sometimes, this kind of work can also lead to other opportunities. Through my work on the council, I learned about the PCA Training and Education Fund, and I am now employed as a facilitator where I teach training programs directly to PCAs.

One piece of advice I would give to anyone interested in this kind of work is to be patient. There is a big learning curve. Many of these councils are connected to the state, so they often require an application and review process. In my case, it took over a year to hear back. After that, I had to go through an interview with the Attorney General’s office because the position is a state appointment. As I said before, sometimes the work of these committees can take a long time too, with meetings being weeks or sometimes even months apart.

In Massachusetts, there are many different types of councils and committees individuals can serve on like the PCA Workforce Council. I encourage everyone to look into them and get involved. Some are statewide, but all cities and towns have their own disability commissions, housing committees, and councils on aging. They are all great opportunities to share your voice and advocate for change.

Even if these councils aren’t focused on disability issues, you should still apply to serve on them. The world isn’t built for people with disabilities in mind. When decisions are made about infrastructure, healthcare, and other public policies, people with disabilities are often not included in those conversations. That’s why it’s so important to have more voices at the table — people who can speak up about what matters to us and how these decisions affect our daily lives.

Below is a link to a site where you can find current councils that have open seats in Massachusetts.