Should you be required to provide data to participate in society? Momentum Center collects personal data from members every six months, and some members with mental illness are even test subjects for exploring new methods for emotional regulation. The Momentum Center claims that they are creating an inclusive environment within the community for people with mental illness and disabilities, but they are also studying these people and collecting their personal data.
During the June 26, 2023, Ottawa County Community Mental Health board meeting Barbara Lee Van Horssen, the Experi-Mentor at the Momentum Center explained, (19:13) “We do ongoing data collection. When we first started, we knew that we had a hybrid model and if it worked, we’d want to share it, and if we were going to share it, we needed to have data. [] So we put the tools in place right at the beginning to collect data. We collect data when members join, and then at six-month intervals after that.”
After talking about data collection, she disclosed that the Momentum Center is involved with research and has even submitted a paper to a peer reviewed journal. (28:00) “I mentioned our research partners; HCA Atlas, the Grand Haven Area Community Foundation provided funding for a two-year study. [] We looked at data with Community Mental Health, North Ottawa Community Health, and with Pine Rest.”
(33:20) “We have submitted our first article to a peer reviewed journal and are anticipating publication. [] We are continuing research with MSU on testing something that’s called SIERA. It’s an intervention and emotional regulation that has been used successfully with people on the autism spectrum, and we are using it with people with mental illness. We ran our first pilot group. It went really well. We were able to get some feedback to MSU about some changes that we suggested, but we have members using the stuff that they learned. It’s great. [] July 10th, we start the non-pilot version. And we have some funding from Blue Cross Blue Shield of Michigan to pay for that, which is exciting.”
During this same meeting Van Horssen also discussed mixing people with intellectual and developmental disabilities (I/DD) such as Down’s Syndrome and Autism, with people that have mental illness, and substance use disorders. (7:10) “We also combine and intentionally integrate populations that are typically placed in different programs. Namely people with mental illness, people with addictions, and people with disabilities. It’s one of our primary strengths because it creates a place of socialization and integration, instead of creating bubbles of isolation. We begin by integrating within our walls and then we create integration with the community outside of our walls.”
Since people with intellectual and developmental disabilities have difficulty reading situations, and people with mental illness have difficulty regulating their emotions, as a lay person, it seems to me that combining these two populations and then on top of that adding a third group with substance use disorders is a recipe for disaster. Does the Momentum Center have the medical expertise to de-escalate or problem solve the emotionally charged situations that are sure to arise? From an ethical standpoint, it really makes me wonder if anyone should be studying the intentional combination of these vulnerable populations.