(from left to right) Joyce, Max, and Craig.
Meet Max Donatelli, a well-known advocate in the local community for individuals with intellectual and developmental disabilities and a devoted father to Craig, an individual who receives services from Aspire of WNY! Max’s work and personal commitment have touched countless lives, as he continues to be a strong advocate for individuals with intellectual and developmental disabilities.
Craig, who has Down syndrome, has been a central figure in Max’s advocacy work. As Craig grew up, Max became determined to not only advocate for his own son but also to make a difference for others in the intellectual and developmental disability community. “Since Craig is now 36; Joyce, my wife, and I have been in the business a long time,” Max explains.
Within the community, Max and Joyce are founding members of the Developmental Disabilities Alliance of WNY (DDAWNY) Family Committee, where they have worked to ensure that family members of individuals with intellectual and developmental disabilities are effectively advocating for their loved ones, contacting legislators, and becoming more actively involved in advocacy.
In addition to his work with DDAWNY, Max has recently served as the chair of the Erie County Community Services Board for Mental Hygiene. His leadership in this role has helped to advance policies that improve the quality of life for people with disabilities and their families. Max is also the former Executive Director of Parent Network of WNY, an organization offering parents training and information on navigating the special education system.
Max’s contributions to the intellectual and developmental disability community have not gone unnoticed. He has received numerous awards for his advocacy work, including the NY Alliance for Inclusion and Innovation’s Community Advocacy Award and the National Federation of Just Communities (NFJC) Lana Benatovich Lifetime Achievement Award; and others over the years.
Max took his dedication to advocacy for people with disabilities to new heights when he teamed up with BJ Stasio, a prominent advocate, a person with a developmental disability, and a longtime friend of Max, to develop the model for what they call “The Art of Advocacy.”
BJ and Max.
Max and BJ initially connected over shared concerns they had affecting the disability community, as well as a mutual agreement that there is a greater need for advocates for people with disabilities. They began meeting weekly at the Wonder Coffee House, a coffee shop run by BJ’s church, (then called Wonder Church, now called Hope Rising) to discuss frustrations, ideas, and potential advocacy efforts. From this, the Art of Advocacy was born.
The Art of Advocacy is a model founded by Max and BJ, that aims to teach individuals with disabilities, as well as their friends, families, and allies, how to be better advocates through a work-your-way-up model that encourages participants to build their skills and become mentors as they advance.
“Craig and I took a Tae-Kwon-Do class together several years ago. We were able to move from novice White Belt all the way up to working on our Black Belt, mastery level. “I suggested to BJ that using the idea of increasing your skill level as you move up could be a great model for advocacy,” Max explains. “What stands out about this model is that not only does one learn increased skills as they move up, but they have opportunities to teach skills, helping them to understand the skill at an even deeper level.”
When deciding what to call the model, Max and BJ eventually settled on “The Art of Advocacy” and decided that instead of using belts, they would use wristbands. Participants will start with a white wristband and work their way up, as they continue to learn more skills and teach others about how to be good advocates for people with disabilities, whether it’s for themselves or a loved one.
Developing this model took place over many months with a lot of help from those around them, including the co-pastors of Hope Rising, leaders in the disability community, BJ’s work with the Office for People with Developmental Disabilities (OPWDD) and Self Advocacy Association of New York State (SANYS) as well as Max’s work with DDAWNY Family Committee.
Today, BJ and Max have developed the model, along with a toolbox of resources, and have offered it to various organizations to adapt the Art of Advocacy to help teach self-advocates, family members, and allies about how to become more effective advocates.
The Art of Advocacy has developed rubrics, PowerPoints, and a Facebook page, and has gotten their name and model trademarked. They are currently working on obtaining 501 (c)(3) not-for-profit status to be able to offer their skills and knowledge more widely, helping to create a broader network of disability advocates within our community and beyond.
Max, Joyce, and BJ are also all immensely proud of the advocate that Craig, son of Max and Joyce, has become. So much so, that Craig has been awarded a black wristband (the highest-level wristband) from The Art of Advocacy for his efforts in working with legislators and the Governor’s office. Recently, Karen McMahon, a New York State Assembly Member and Committee Member of the New York State Assembly Committee for People with Disabilities, began attending Craig’s life plan meetings after Craig had invited her.
“There is a great need for more disability advocates, and the hope is to inspire and teach more people to learn how they can become more effective in their advocacy efforts,” Max explains. The commitment to advocacy for people with disabilities that Max and BJ both share is at the core of their work at The Art of Advocacy, as reflected in their slogan: “It’s not a model, it’s a way of life.”