In January, National Public Radio ran a multi-part series on sexual abuse of people with intellectual and developmental disabilities (I/DD), most often at the hands of people hired to take care of them. Around the same time the HHS Office of the Inspector General released a report on the incidence of abuse and neglect in residential settings. Conversations in the advocacy community began to take two different tracks. One side, rightly concerned for people’s safety, feel more protections are in order – more monitoring, additional quality feedback loops, better hiring and staff vetting, but essentially, keeping people close in the interest of keeping them “safe.” Some expressed fear that these experiences would cause an erosion of the home and community-based settings final rule. The other side is thinking if people with I/DD had more engagement in their communities, were out and about more and involved in faith membership, rec and leisure, clubs, sports, educational opportunities, employment, and lived in neighborhoods with fellow citizens, then lots of people would know them, would expect them to show up in certain places at certain times. If they didn’t show, or something didn’t seem right when they did show up, someone would know immediately and could address it. While quality control and staff vetting and training is important, procedures put in place should regulate the system, not the individuals served by the system.
Anthem is considering that implementing Peer Support programs for people with I/DD in partnership with local organizations steeped in experience supporting people with I/DD in the community where those health plans are delivering services and supports to people may be a hedge against the isolation that can allow abuse and neglect to occur. In talking with self-advocates and other organizations that have started Peer Support programs, a critical early step is listening to what people want in a program, engaging potential peers in the design, training content, partners to involve and the outcomes that should be tracked. What do managed care programs need to know about how to do this? Come for a dialogue with a member of the disability policy engagement team at Anthem, the state director of The Arc of Tennessee and self-advocates that have been trained to support people in a peer-to-peer model.