1. Emergency Preparedness for Families with Children with Special Needs
Jessica McClusky
Ferris State University

2. Overview Agency: Kent County Health Department Contact: Chris Buczek
Children’s Special Health Care Services Supervisor
Population: Families with children with special needs
Topic: Emergency and disaster preparedness
I chose to work with the Kent County Health Department due to their wide range of services provided. After choosing my population as children with special needs, I arranged to work with Chris Buczek, a nurse who is the supervisor for the Children’s Special Health Care Services and a mother of a son with cerebral palsy. In light of recent storms and power outages at the time of our meeting, I chose to help educate families with children with special needs on the importance of emergency and disaster preparedness planning.

3. Definition Special Needs Needing support beyond the average child
Having or at risk for chronic conditions
Physical
Developmental
Behavioral
Emotional
The United States Department of Health and Human Services (USDHHS) (2008) defines a child with special needs as one that needs support beyond that of the average child. This encompasses a multitude of conditions, including children who have or are at risk for having chronic physical, developmental, behavioral, or emotional conditions.

4. Demographics Frequently dependent on medications and medical equipment
Ventilators, oxygen, feeding pumps, wheelchairs
Deteriorate more quickly from lack of equipment and supplies
Complex conditions and comorbidities
Additionally, children with special needs are frequently dependent on medications and medical equipment, such as ventilators, oxygen, feeding pumps, and wheelchairs, just to name a few (Murray, 2011). Because of this, their health deteriorates more quickly if they have a lack of equipment, medication, or supplies (American Academy of Pediatrics [AAP], 2010). This puts them at higher risk for poor outcomes during an emergency situation. Additionally, these children frequently have multiple health issues, making them very complex care cases (AAP, 2010). This is an additional concern with emergency responders who have no knowledge of their comorbidities.

5. Demographics 14% of United States children
22% of United States households
Increasing over time
16.1% of boys vs. 11.6% of girls
Equally distributed among income levels
Multiracial children have highest prevalence (18%), Asian children have the lowest (6.3%)
Michigan:
15.4% of Michigan children
Highest prevalence below poverty level (19.1%)
How prevalent are children with special needs? Murray (2011) reports about 14% of the children under the age of 18 in the United States as having some form of special need. They are found in about 22% of United States households (USDHHS, 2008). These numbers are up from the previous survey completed in 2011, with approximately a 2% increase in both of those numbers. Though the prevalence is equally distributed among income levels, boys are more likely to have a special need than girls, and multiracial children have the highest prevalence with 18%. Asian children are the lowest with 6.3%.
In Michigan, the overall prevalence rate is a little higher than nationally at 15.4% (USDHHS, 2008). Interestingly, while these children are equally distributed among income levels nationally, Michigan reports a much higher prevalence below the poverty level than higher income brackets.

6. Learning Needs Preparedness leads to better health outcomes
Personal interviews revealed reluctance to utilize large emergency planning packets
Families never considered the impact of a disaster situation
Owens, Stidham, and Owens (2013) clearly state that preparedness leads to better health outcomes in an emergency or disaster situation. Because of this, the learning needs for my population included educating on the importance of completing a planning tool and discussing it with the whole family. When I spoke with some of the families, they reported being overwhelmed by large packets of preparedness information, or being frustrated with having to tailor it to their special needs. This is where the idea developed to provide these families with something that is tailored to them, but also is user friendly and not cumbersome.

7. Behavioral Objectives
The target population will describe the need for an emergency or disaster plan for their family
The target population will complete the provided emergency preparedness tool and discuss their plan as a family
The target population will describe additional resources to access if needed for further preparedness needs
The behavioral objectives for this intervention include:
The target population will describe the need for an emergency or disaster plan for their family. When I visited with families at a local support group, many were skeptical about the need for a plan for their family. As we discussed disaster situations in more detail, they began to agree that it would be beneficial to ensure their child was well taken care of.
The target population will complete the provided emergency preparedness tool and discuss their plan as a family.
The target population will describe additional resources to access if needed for further preparedness needs. With this objective, I wanted to make sure the families were aware that there is more information available if they would like it. The purpose of my intervention was to give them a simple, but effective, planning tool.

8. Care Model Framework The Logic Model
Sync program objectives and outcomes
Evaluate successes
Determine areas of improvement
Enhance communication and collaboration
I utilized the logic model for program planning. The purpose of this model is to provide a framework for change that allows the planner to sync program objectives and outcomes, evaluate successes, determine areas of improvement, and enhance communication and collaboration (Curley & Vitale, 2011).

9. Here is an example of my logic model developed for my program intervention. I liked this model because it clearly showed how each portion of the program flows to the next and directly affects the bottom, which in this case are the outcomes.

10. Intervention: Emergency Preparedness Planning Tool
1 page planning tool
Intended to hang in prominent area in home
1 page educational summary
Intended to quickly discuss the who, what, where, when, why, and how of disaster planning
Going off of what my population described as barriers to completing disaster planning (overwhelmingly large packets of information that did not address their unique needs), my intervention was to create a user-friendly, 1 page emergency planning tool. This tool is intended to be filled out completely and hung in a prominent area in the home, such as the refrigerator or a kitchen cabinet. The purpose is to provide families with a quick reference for necessary items if they need to pack and evacuate in a hurry, or to provide emergency responders with pertinent information about the medically complex child so they can give appropriate care.
Additionally, I added a second 1 page document that quickly explains the who, what, why, where, when, and how of disaster preparedness. The purpose of this is to educate families on the need to take the few minutes to complete the planning tool.

11. Here is my final emergency planning tool and preparedness guide that was given to families. The first page is meant to be filled out and hung up in the home, while the second page is intended to educate families and provide further resources.

12. Distribution Social Media Kent County Community Wellness Nurses
Facebook group for families with children with special needs
300 members
Children’s Special Health Care Services list
2,000 members
Kent County Community Wellness Nurses
Kent County Health Department disaster preparedness coordinator
Dubose (2011) discusses that the Internet is a successful way to connect and share information quickly and easily. This will be one method of distributing this education to families with children with special needs. There is a very active special needs Facebook group with around 300 members that frequently share information and support. The planning tool was posted for all to have access to, and is saved on the page for future reference. Additionally, the document was ed to the Children’s Special Health Care Services distribution list, which include about 2,000 families and health care workers.
The Community Wellness Nurses that frequently do home visits with families will also have access to and the ability to distribute the tool to families they are seeing. Finally, it will be available at the Kent County Health Department through the disaster preparedness coordinator.

13. Unique Program Tailors
Consideration of unique population needs
What is vital to these families?
Varying education levels
Tool written below a 6th grade reading level
The main consideration with this intervention was to tailor the planning tool to be pertinent to these special needs families and their unique needs. Additionally, because of varying education levels, the tool and accompanying education was written below a 6th grade reading level (Safeer & Keenan, 2005).

14. Evaluation Feedback received from: Community Wellness Nurses
Families of children with special needs
Through Facebook and support group
Children’s Special Health Care Services supervisor
Feedback was received almost starting immediately from various groups, including the Community Wellness Nurses, families utilizing the tool, and the supervisor of Children’s Special Health Care Services.

15. Evaluation Positive feedback: Areas for improvement:
Length, easy to use, quick to fill out, visually appealing, eye catching, contains areas for necessary information
Areas for improvement:
Room for more medications, include areas for parent phone number/address if different than child
The majority of the feedback received was positive, and included length, ease of use, quick to fill out, visually appealing, eye catching, and contains areas for necessary information. Areas for improvement included room for more medications to be listed, and to include areas for parent contact information if it is different from the child.

16. Conclusion Small tool, big impact Personal thoughts
In conclusion, I think though this was a simple, small tool, I think it has had a big impact. I was happy to hear the positive feedback from the families who thought it was so easy to fill out, but also thought it gave them peace of mind if an emergency were to occur. Meeting these families was very humbling because they are amazing parents and care coordinators. It was interesting to learn of their day-to-day struggles with medications, insurance, money, school, social services, and generally advocating for their child to have the best life possible. I was happy to provide them with anything that could make one small part of their lives feel a little easier.

17. References
American Academy of Pediatrics. (2010). Emergency information forms and emergency preparedness for children with special health care needs. Pediatrics, 125, 829. doi: /peds
Curley, A. L. & Vitale, P. A. (Eds.). (2011). Population-based nursing: Concepts and competencies for advanced practice. New York, NY: Springer Publishing Company.
Dubose, C. (2011). The social media revolution. Radiologic Technology, 83(2),
Murray, J. S. (2011). Disaster preparedness for children with special healthcare needs and disabilities. Pediatric Nursing, 16,
Owens, J. K., Stidham, A. W., & Owens, E. L. (2013). Disaster evacuation for persons with special needs: A content analysis of information on YouTube. Applied Nursing Research, 26,
Safeer, R. S. & Keenan, J. (2005). Health literacy: The gap between physicians and patients. American Family Physician, 72(3),
United States Department of Health and Human Services. (2008). National survey of children with special health care needs. Retrieved from