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Effective fire prevention and survival skills—life skills that can protect young lives now and in their future lives—are more than school fire drills, a session of stop, drop and roll, or a mention of pot holders during a cooking lesson. Children and teens with intellectual disabilities are at higher for preventable injuries, including fire and burns. Teens are an especially important group to reach with effective fire safety skills, because they are approaching an age when many will move into more independent living situations—where their risk increases. This article includes six modules for lessons and classroom activities, discussion prompts and take-home materials that cover the key skills of kitchen safety, smoke alarms and exit plans, and calling 911.
When children reach about 14 years of age, most parents feel confident about leaving them home alone for a certain amount of time. For parents of teens with intellectual disabilities, though, that decision is more complicated. Will their child know how to respond if there’s an emergency, get out if the smoke alarm sounds, and call 9-1-1?
Recently Dr. Robert Cole of Community Health Strategies presented a fire safety seminar sponsored by Prevention1st to faculty of the Cooke Center for Learning and Development in New York City. The Cooke Center provides special education services for students ages 5 through 21 with mild-to-moderate cognitive or developmental disabilities and severe language-based learning disabilities. One of the take-aways they have incorporated into their curriculum is the importance of learning and practicing what to do when the smoke alarm goes off.
“Fire safety has always been a topic we’ve covered, but Bob’s seminar really brought out how important it is to have a specific plan if there’s an emergency,” said Virginia Skar, CCC-SLP, Chair of Adaptive Services at Cooke Center. The Center has now integrated exit planning into the journal the school creates as part of parental involvement in educational planning, goal setting, and review of their child’s progress.
Cooke Center also successfully used play safe! be safe!, a fire safety program developed by BIC Corporation for use with young children, as part of the spring semester’s health and safety life skills instruction for their 14- to 18-year-old students.
“Play safe! is a wonderful fit for us,” said Skar, who adapted the program to be age-appropriate for high school by modifying some materials, such as replacing images of children with cutouts of adults. “The materials are interactive and sensory-rich. It provides appropriate learning objectives, and techniques are broken down into manageable steps. These are good for teaching anyone!”
Prevention 1st has entered the exciting next phase in its development of an evaluated curriculum for teaching safety to people with intellectual disabilities, thanks to grants from the Developmental Disabilities Giving Circle of the Rochester Area Community Foundation and the Jane L. and Laurence C. Glazer Charitable Trust.
More people with intellectual disabilities are choosing to live independently or semi-independently, with less intensive supervision and supports. Without effective safety skills training, these individuals and their families are concerned about prevention and preparedness.
In the pilot program funded by these two grants, focus groups were held and in-home training sessions are underway with 30 individuals with intellectual disabilities who are new to independent living. Because of the great variability in residential settings, the program began with an environmental assessment and orientation for each of the individuals along their circles of support.
Prevention 1st and its expert partner Community Health Strategies will adapt the curriculum as necessary to teach fire and kitchen safety skills to the individuals in the pilot program. They will also test the use of a wireless tablet produced by program partner Touch Stream Solutions, which audibly and visually reminds users of important tasks such as checking smoke alarms and practicing an exit route.
The pilot program will be evaluated throughout its delivery. Progress on skills development and hazard reduction will be tracked and measured to assess effectiveness. Program trainers will also communicate regularly with each person’s circles of support to get their input on the progress of their loved one’s skills.
Based on the results of this pilot program, Prevention 1st will finalize the assessment tool, training curriculum and associated materials. The pilot will provide the foundation for a groundbreaking, evidence-based curriculum that will meet the needs of an emerging population of people with intellectual disabilities who will be living more independently than ever.
If you live in the Rochester, NY area and you’d like to join the pilot program, please submit a Participant Application.
Many thanks to the Safe at Home Project Steering Committee:
Katie Abbott, People Inc.
Anthony Arnitz, NYS Office for People with Developmental Disabilities
Joel Benzel, Touch Stream Solutions
Jason Blackwell, Starbridge
Holly Brown, University of Rochester Medical Center
Molly Clifford, Community Health Strategies
Robert Cole, Ph.D, Community Health Strategies
Ann Costello, Golisano Foundation
Robert Crandall, Prevention 1st
Jack Dinaburg, Prevention 1st
Julia Engstrom, Trinity Assistance Corp.
Ernie Haywood, Lifetime Assistance
Karen Knauf, Injury Free Coalition for Kids
Cindy Lill, In the Driver’s Seat
David McAdam, Strong Center for Developmental Disabilities
Wendy McLaughlin, Touch Stream Solutions
Debbie Napolitano, Strong Center for Developmental Disabilities
Jen Ralph, Community Health Strategies
Joyce Steel, In the Driver’s Seat
Nick Vignati, Arc of Ontario
Young children and people with developmental disabilities are among those at highest risk from fire. At the Mississippi Fire Chiefs’ Conference, fire chiefs learned how to protect these vulnerable groups even when budgets for preventive education are limited.
The state of Mississippi had the highest average fire death rate in the five most recent years.[i] Lt. Robert Crandall (Ret.), a Prevention 1st board member and vice-president of Community Health Strategies, was recently invited to present ways to bring preventive education to two of the most vulnerable groups: young children, and people with developmental disabilities.
Community Risk Reduction: (Mostly) Free Fire Safety Resources for Vulnerable Populations, presented to 120 fire chiefs, lead off the two-day Mississippi Fire Chiefs’ Conference.
The invitation and attendance “shows a real commitment to education in times of lower budgets,” said Crandall.
On average every year across the country, 49,300 fires are caused by “child playing,” leading to 80 deaths and 860 injuries—nearly 3 injuries a day (NFPA data 2014). Young children have a great deal of experience with fire from family activities such as cooking and grilling, camping, and celebrations involving candles, yet can’t really understand how dangerous fire can be. Crandall shared free and low-cost materials that can help fire service educators and others reach this group:
- play safe! be safe! – an award-winning, ready-to-use classroom kit available in English, Spanish and French, including DVD, activity boards, Keep Away!/Aléjate card game, and Resource Book.
- Mikey Makes a Mess – a children’s book available both in print and online.
- Help Mikey Make It Out – an award-winning online teaching game.
People with developmental disabilities are at much greater risk of dying from an injury than the general population, and at 4 times the risk of dying from a fire. Policy changes are moving people with disabilities into more independent living situations, where they are at a 34% greater risk for injury than in institutionalized settings. [ii]
Prevention 1st and Community Health Strategies have developed and delivered Safe at Home training workshops addressing communication between fire service and people with disabilities, avoiding the dangers of exit drill overkill, strategies for people who resist complying with fire drills, and involving families in home safety, with an emphasis on practical skills particularly kitchen/cooking safety. They have been encouraged by the New York State Office for People with Developmental Disabilities (OPWDD) and others to create the program structure necessary to deliver the training more widely, including a formal curriculum and residential safety assessment tool.
play safe! be safe! fire safety education workshops
[i] NFPA, US Unintentional Fire Death Rates by State, October 2012
[ii] Strauss, et. al, American Journal of Epidemiology (1999)
Read Part 1: How Can People With Disabilities Be Safe While Living Independently?
Recently Prevention 1st convened Safe at Home: Effective Safety Training for People with Intellectual Disabilities Living Independently. Co-sponsored with the NYS Office of People With Developmental Disabilities and Monroe Community College, this community conference drew more than 100 attendees including people with disabilities, caregivers, and staff members and volunteers from community agencies, fire departments, and schools.
We asked attendees to rank the importance of 10 commonly mentioned safety concerns and to feel free to add in others. From the final list of 28 topics, fire safety was ranked the number one concern and kitchen/cooking safety was ranked number two. They’re right to be concerned: the US Fire Administration reports that cooking is the leading cause of home fires, causing 49% of such fires.
This response, combined with the statistics on safety risks for people with developmental disabilities and the concerns we had already collected from potential recipients of our proposed safety training, makes it clear that fire safety, including cooking safety, is our highest training development priority.
Encouraged by the New York State Office for People with Developmental Disabilities (OPWDD) Prevention 1st is developing an evaluated curriculum for teaching fire safety and injury prevention skills to people with intellectual disabilities (ID) who live independently.
Many local agencies and families are also eagerly awaiting an effective, evidence-based program to improve the safety of people with intellectual disabilities living independently.
Thanks to grants from the Developmental Disabilities Giving Circle of the Rochester Area Community Foundation and the Jane L. and Laurence C. Glazer Charitable Trust, focus groups were held and a pilot program of in-home training sessions is underway with 30 individuals with intellectual disabilities who are new to independent living.
We’ll keep you updated on how Prevention 1st and Community Health Strategies are working together to develop that 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.
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!”
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.
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.