I cannot talk about being person-centered as a professional without acknowledging the journey that brought me to where I am. That journey began with the diagnosis of my own son, Nicky, at 16 months old. The journey is a story of discovery, courage, progress, faith, pain, heartbreak, joy and pride. One of the darkest of those moments that define heartbreak and pain was learning that Nicky had been abused one more than one occasion, back in 2014.
My husband and I turned that moment into a mission. During the course of learning about the abuse, I asked the State investigators what mechanism was in place that would prevent the abusers from being hired as caregivers somewhere else, if they were not convicted in a court of law (something that actually happens to a very small percentage of cases at all). The answer was “nothing.” Our mission defined itself: to create a registry of substantiated abusers, and require all human service providers who support people with intellectual disabilities in Massachusetts to check the registry before hiring (and, not hire them).
The reality of this is that it requires the creation of a law, so that the necessary funding, operational development and oversight, maintenance, allowances for due process and all appropriate protections are in place – much like animal and sex abuser registries.
Nicky’s Law refers to a bill that creates such a registry; sponsored by Senator Mike Moore and co-sponsored by Representative Linda Dean-Campbell, developed and vetted by numerous stakeholders, led by the ARC of Massachusetts, supported by human service providers, disability support and special-interest organizations, the bill received unanimous support in the Senate during the formal session in the summer of 2018. Sadly, it fell short of a vote in the House that same year.
We refiled Nicky’s Law in 2019 and have every expectation that it will pass. This is due in large part to the massive support received from the Massachusetts voters, who have participated in multiple letter and phone campaigns, hearings, media blitzes, and a Statehouse vigil. The voice of the people is loud and clear: this must happen.
So my name, my son’s name and the loving community I call my own are synonymous with Nicky’s Law and all it stands for. I cannot separate what I do as a person-centered practitioner from my work as a social justice champion.
Here’s a December, 2018 radio interview I did on the bill status at that time: