How Can People With Disabilities Be Safe While Living Independently?

SafeAtHome_headerPeople with developmental disabilities are at higher risk for injuries, and as they move into more independent living their risk increases.



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.

Why are people with developmental Disabilities At Higher Risk for Injury?

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!”

An Effective Safety Training Model

Despite the fact that families and caregivers self-report major concerns about fire safety (Prevention 1st, 2015) , previously there has not been a comprehensive, individualized training program to ensure they have the skills to live as safely as possible. No such training had 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 have developed Safe at Home, 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.

Who Needs Injury Prevention Education? Everyone!

5th- and 6th-Graders at Hillel Community Day School learned about home safety to teach their schoolmates.
5th- and 6th-Graders at Hillel Community Day School learned about home safety to teach their schoolmates.

Sometimes when we at Prevention 1st explain our focus on home safety and injury prevention, we get a puzzled look that says: “Really?  Who needs that?”

Just a few of the requests for training we’ve received recently, which we meet as grants and underwriting become available, paint a picture of who needs injury prevention education:

  •  5th and 6th graders at Hillel Community Day School to teach Peer to Peer Home Safety Training;
  • At-risk youth, and the staff who work with them, at Hillside Family of Agencies;
  • Blind and visually impaired people from the Association for the Blind and Visually Impaired (ABVI);
  • Foster parents, and the staff of Monroe County Foster Care;
  • Children and adults with developmental disabilities through the Arc of Monroe, Mary Cariola Children’s Center, and the Self-Advocacy Association of New York State (SANYS);
  • Social workers in the Rochester City School District, to learn how to use our program After the Fire: The Teachable Moment in classrooms where a child has experienced a fire;
  • Red Cross workers, who also use The Teachable Moment with the families they help following a fire;
  • Older adults, through the Greater Rochester Area Partnership for the Elderly (GRAPE);
  • Residents of low-income communities, through Habitat for Humanity.


Learn more about Prevention 1st‘s Programs.

After the Wells Fire: Beyond Codes and Regulation

When fire spread through the Riverview Individualized Residential Alternative in Wells, NY, four of the nine people with developmental disabilities living there perished. Today, are people with developmental disabilities any safer?


The Grand Jury Report released in December 2009 in response to the Wells fire noted that there are approximately 7,000 such group homes across New York State, and that “a very conservative estimate of the number of structure fires in these facilities is at least one each week.” It concluded:  “There is a grave, and we believe unacceptable, risk that more lives will be lost unless action is taken…to address the systemic shortcomings that affected Riverview and continue to affect every other such residence in our State.” The systemic shortcomings detailed in the report included not just structural issues but human behavior.

The report found that the Wells residence had more fire safety features than many such homes in the state, and met or exceeded all Office of Mental Retardation and Developmental Disabilities residential requirements. State law already requires fire drills four times a year (two of which must be at night) for such residences.

While the Grand Jury’s recommendations called for stricter building code and fire safety standards, it also found that “the practices at Riverview were geared to meet regulatory requirements rather than to meeting the actual needs of the residents who were extraordinarily vulnerable to the risk of death in a structure fire.”

The potential downside of relying on regulation is that it can narrow the focus of all safety issues to compliance, leaving a vacuum of motivation and little understanding of why these things are necessary and desirable. Both thought and action are concentrated on meeting legal requirements. People who are never asked to reflect on the need for meaningful practice may meet only the letter of the law, e.g. performing fire drills in the same way each time, rather than practicing what to do when something unforeseen—a fire—actually happens. Regulation can give a false sense of security. Because they have met a quota of fire drills, people believe they have done a good job and everyone is now safe.

An unintended consequence of a high degree of regulation is that complex safety issues may be addressed by the lowest common denominator of compliance. Home fire safety and fire survival is in fact complicated, as everyone knows who has actually gone through the process of creating and practicing a home fire drill. There are many factors to be considered, and realistic practice can reveal dangerous flaws in an imagined escape plan. How will each member of the household get out of the home if a fire occurred? Does everyone know how to respond? What physical barriers might prevent escape? What physical and mental limitations of each individual might hinder escape? What would be the best route out, for fires in a variety of possible locations? “What if?” is a question that must be continually asked, and which is not readily answered by a regulation. One size simply doesn’t fit all.

Meaningful training is built on models proven to actually change behavior, including the critical factor of motivation. Evaluation is also needed, to know not just that training took place, but that it actually increased knowledge and the probability that people will do what they need to do.

To prevent another tragedy, safety training must change behavior and it must take place at all three levels: residents, staff, and management. If any of these three groups are not involved, meaningful safety training will not take place.

At the Wells fire, three of the residents died after they had almost made it to safety, but went back inside the burning building when the two staff members had to help a resident who had fallen or sat down. The Grand Jury found that “by not practicing full evacuations and evacuations by alternate exits, the residents, who required frequent repetition for learning and who are dependent upon habit, were put at greater risk.” It further noted the “very significant challenge presented in evacuating individuals who do not have self preservation skills,” while also noting that “these circumstances were reasonably foreseeable.”

What kind of training, then, is effective for people with developmental disabilities? In the home safety trainings that Prevention 1st has provided for Finger Lakes Office for People With Developmental Disabilities, the Arc of Monroe, Hillside Children’s Center and others, we have found that, given an opportunity, people with developmental disabilities are interested and engaged in learning about safety. With repetition, they remember important safety lessons.

In our experience people with developmental disabilities have many questions about fire safety, and their questions are very specific and pertinent to their individual situations. They ask plenty of those “What if?” questions. In other words, their questions address the true complexity of fire survival skills described above! Effective training means listening carefully to questions and using them to individualize the training so that it is meaningful to the audience. The person providing fire safety training needs an understanding of and a commitment to the goals of fire safety, as well as the motivation and enthusiasm needed to engage an audience. For this reason, and also because frequent repetition is required to retain learning, we are frequently asked to return to give additional trainings.

Staff and Management
The public report issued by the Office of Fire Prevention and Control concerning the Wells fire found that “fire safety training of new employees has steadily decreased over the years, to approximately 90 minutes.” The Grand Jury Report noted that fire safety at Riverview and other facilities is typically handled by employees who “have little training in fire safety and cannot in any sense be considered professionals in the field.”

The Grand Jury concluded that “the training appears to have been confined to the ‘RACE’ acronym…Rescue or Relocate, Alarm, Confine, Evacuate,” and that some staff members “were unable to elaborate on the acronym beyond the observation that evacuation of residents was the first priority and only after evacuation could efforts to extinguish a fire be taken.” During the Wells fire evacuation, “time was taken to answer the phone call from the alarm operator and to retrieve and discharge a fire extinguisher.” Staff members tried to evacuate residents through the main exit rather than through a side exit nearer the bedrooms which was protected by double fire doors.

At the Wells residence, fire drills conducted on the overnight shift were conducted either: 1) by simulation, with staff estimating the amount of time it would take to get residents up and out; 2) at pre-arranged times of the night and without a full evacuation, or 3) after 5 a.m., when additional staff arrived and could assist the two overnight workers in the evacuation. The result was that the most critical questions of home escape were not addressed: Can everyone get out, under real conditions?

Prevention 1st has found many caregivers are under the impression that regulations require them to perform fire drills monthly, rather than four times a year. This was the belief at the Wells residence. Unfortunately, higher repetition of drills does not necessarily lead to greater safety. Such repetition can lead to resistance, complaisance, and dangerously poor habits, such as going right back inside immediately after evacuating the building when the alarm sounds. When caregivers enforce drills but haven’t internalized the reasons for this practice, they may fail to communicate that it’s important to respond when the alarm sounds, to get outside, and stay out until told that it is safe to return.

The need for sincere support of behavior change by management is obvious. At the Wells residence, random checks of overnight staff by senior supervisors occurred, but “fire drills were generally not conducted as part of these supervisory visits.” It should be emphasized that management’s attitude is critical to the motivation of staff to take the actions that will protect both themselves and the residents in their care. Staff should not simply be threatened with consequences if they fail to comply with regulations. They should be provided with effective training, and they should be thanked, praised and respected for doing things right, even when that means doing things the hard way.


Read the full Grand Jury Report here.
Our thanks to the NYCLU for making this Report accessible.

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