While unintentional injuries are the leading cause of death for everyone from age 1 to 44, people with intellectual and developmental disabilities are at even higher risk. People with such disabilities are 4 times more likely to die in a fire, 6 times more likely to die from a fall, and 6 times more likely to die from drowning.
The belief that unintentional injuries are unpredictable—“accidents will happen”—and thus we can’t do anything about them can increase risk for anyone. When caregivers or supervisors hold this belief it is a primary risk factor for people with developmental disabilities. While this attitude may reflect the caregivers’ experience, it also seriously undercuts motivation and willingness to even pay attention to the issue of injury prevention.
The movement toward greater self-direction for people with developmental disabilities has moved them out of institutions and into the community. But as their independence increases, so does their risk:
The risk of injury for people living in institutional settings is only 58% of the risk for those living in small group homes, while the risk of injury for those in semi-independent living is 34% greater. This is true even though individuals moving into semi-independent living (Defined as “one or more persons with developmental disability live in a separate residence with periodic visits by staff who provide various services”) are typically those with the highest level of function.
The risks of greater independence will only increase in the future. The U.S. Supreme Court’s 1999 Olmstead decision required states to provide people with disabilities the necessary support and services to live in the most integrated living setting. In 2009, the U.S. Department of Justice (DOJ) began an “aggressive effort to enforce” Olmstead nationwide. As one example, in 2013 DOJ reached a settlement in a New York case requiring that within five years, the state will assess current adult care home residents, transition them to supported housing if appropriate, and provide supported employment and community mental health services.
People With Disabilities Are Concerned About Safety
The experience of Prevention 1st safety trainers is that people with developmental disabilities understand that they are at risk. They are concerned about their own vulnerability, in terms of both general personal safety and home safety, especially fires.
In 6 years of providing training for clients at the ARC of Monroe, CDS Monarch, Hillside, PRALID, Ontario ARC and other agencies supporting people with developmental disabilities, we have found participants are enthusiastically engaged. They share their many concerns, ask a range of questions, express frustration with the lack of real fire prevention training, and are especially worried about escaping in a fire. They want to develop functional skills around safety, and they remember our advice when we return the following year. We have not met with one person involved in the disabilities community who has not said that safety is a major, and largely unaddressed, concern for people with disabilities living independently and those who care for and about them.
Our experience in the field was recently confirmed by a study conducted by the Strong Center for Developmental Disabilities at the University of Rochester and funded by the Developmental Disabilities Planning Council. They conducted 7 focus groups across 5 upstate NY counties and New York City. When asked about their “biggest worry” and what supports were needed, covering basic needs and skill development were among the most commonly mentioned…especially, “learning how to keep safe!”
Toward an Effective Safety Training Model
Despite the fact that families and caregivers self-report major concerns about fire safety (Prevention 1st, 2015) , there has not been a comprehensive, individualized training program to ensure they have the skills to live as safely as possible. No such training has been required, or offered with any consistency, by the myriad organizations that serve people with ID (OPWDD, 2016).
Prevention 1st and its expert partner Community Health Strategies are currently developing an evaluated curriculum for teaching fire safety and injury prevention skills to people with disabilities who are or are preparing to move into independent living situations.
In future articles, we’ll summarize our progress and the current availability of training. If you’re not already on the mailing list for our newsletter Prevention 1st on the 1st, sign up now to be notified when articles appear. If you’re not already on the mailing list for our newsletter Prevention 1st on the 1st, sign up now to be notified when articles appear.