An organization of parents, East Bay Parents Housing Network, which is associated with SFASA, received a grant from All In Alameda County to hold a listening session on crisis prevention and intervention services for individuals with developmental disabilities who exhibit extremely aggressive, self-injurious or destructive behavior. The session was held on December 10, 2016 in Alameda County.
Discussions have included concerns about the well-being of family members and other individuals whose needs for appropriate crisis intervention services are extreme but for whom services seem to be either denied due to the wrong diagnosis or not effectively targeted to their needs. The goal of the session was to hear from families of individuals with developmental disabilities who have severely aggressive, destructive, or self-injurious behaviors to better understand their experiences of crisis situations, the prevention and intervention services they have utilized, how effective those services have been, and what services or service improvements might be needed.
Lessons learned (from the report):
Participants described various facets of a crisis intervention system that is not effective in preventing or responding to severe behavioral crises such as violent aggression, self-injurious behavior or property destruction often exhibited by individuals with autism or other developmental disabilities. Although many of the crisis services described are helpful in some situations, they can only serve a limited range of abilities and behavioral challenges. An approach truly targeted to the specific emotional and behavioral needs of each individual with developmental disabilities is lacking but desperately needed. In its absence, families live in fear of extreme behavioral incidents and outcomes of physical injury for those involved, mistreatment by police, arrest, incarceration, or homelessness.
Participants found that the lack of appropriate, intensive, skilled supports in housing and daytime program settings leads to repeated behavioral incidents requiring emergency responses. The lack of appropriately trained and implemented emergency responses results in the individual entering one of two cycles of inadequate response, depending on the nature of the emergency and the attitude of the police involved. The individual may be taken through some version of the series of medical emergency room/medical hospital/psychiatric emergency room/psychiatric hospital/crisis stabilization. Or the individual may be arrested, incarcerated, have rights and advocacy access restricted, and go through a series of assessments and hearings while imprisoned, at times for years. When the individual leaves either of these two response paths, the initial reasons for the incident have rarely been changed and it is very likely that the cycle will be repeated.
The largest gain by participants in the session was the confirmation that many other families are experiencing similar challenges. When a family is trying to cope with a family member who frequently has severe behavior, the family can be very isolated as members simply try to make it through each day safely. It is extremely helpful to connect with other families with similar experiences, both for the emotional support as well as exchanging resource information.
Download the report.