Model for a Special Needs Registry Capt. William Piwtorak, OFE EMS Coordinator Special Needs Registry Administrator Liberty Township Fire Department (Powell, Ohio)

Why a registry Based on the Star of Life, the first step is detection. Who is in your community that would need extra assistance? Are you prepared to assist them? Do you have the knowledge to help them? Is any special equipment needed? Are plans developed to include this population demographic? Do you know that 23% of the population of Ohio has a disability and 40% of those are considered to be in fair to poor health. How many people are in your area of responsibility? Center fir Disease Control, 2011

Who Qualifies? ♦People who take life sustaining medication ♦Lack of the ability to see ♦Unable to hear ♦Inability to communicate ♦Uses special medical equipment that is life sustaining – I.E ventilator ♦Oxygen use in the home ♦Other medical equipment to increase quality of life ♦Mobility impaired including the morbidly obese ♦Mental Condition ♦Those that require a service animal ♦Those that cannot communicate effectively due to a Language Barrier ♦Being treated by a medical specialist due to a medical disorder that would challenge public safety personnel. NOTE: The list should changed based upon your specific demographic.

Delaware County, Ohio 2004 Liberty Township Fire Department established initial registry identifying 27 families Established a collaborative committee to address the expansion of the program to all of Delaware County. Feb, Delaware County Commissioners' launch a web-based registry for the entire county. Nov 2011 Over 500 people are registered Since 2004, the registry worked for: Remnants of Hurricane Ike windstorm Flooding located in the Northwest part of the county Training aspects to include Emergency Operation Center involvement Routine responses, where a tailored response is needed

Delaware County 2010 Census Population 174,214 U.S Census identified w/ disability 20,050 or 11.5% of the population

Web-Based Registry Development Collaborative Committee included: Liberty Township Fire Dept Powell Police Department Department of Disabilities Delaware County 911 Center Delaware County Emergency Management and Homeland Security Delaware County Informational Technologies Delaware County Emergency Medical Services Resident with special needs child Organizations contacted to assist: Delaware County Sheriff’s office Delaware County Attorney Delaware County Fire Chief’s Association Council for Older Adults Delaware County Auditor’s office of Geographic Information System

Purpose: Designed to assist in disaster planning, mitigation and the ability for public safety personnel to be aware of who is living in their area of responsibility that would potentially require a tailored response in case of an emergency. Website: Secured through login and passwords and internal security measures. Each registrant creates a page that is accessible by them to update any time they wish Address linked through Computer Aided Dispatch (CAD) system as well as Geographical information Systems (GIS) address is key ▪ Verification process ▪ Future communication NOTE: not all people have so, for those rare cases either family gets involved or Department of Disabilities or Council for Older Adults provides one.

Registry Home visit: Occurs from local Fire department, EMS provider, or social worker from either Council for Older Adults or Dept. of Disabilities HIPPA Form: Is filled out and retained ( Designed by the County Attorney’s office) Registration process: Filling out the information online Relationship/ Education: Home visit builds report with family and can provide education to both the responder and family. Data accessible next day: Due to technology, data transfers from website to 911 dispatch computers during the overnight Jurisdiction responsible to: Train their personnel Share with surrounding agencies Update as needed Associated agencies responsible to review database for proper planning is accomplished.

Lessons Learned Surprise, look who is living in your community! We identified residents that would have really challenged our personnel. Now, we are able to develop, train, and effectively provide services tailored to the individual need of the family. Regardless, some people will not want to register. There is a stigma behind developing programs similar to this where some feel it is a invasion of their privacy so in those rare cases, we accept and respect their decision not to participate. Change response attitude and procedures. Once people are educated and shown the effectiveness, it changes their outlook and they are able to accept changes in response or procedures so that they are better serving the public on a case by case situation. Education is power. The more we know the better we can serve…not only the patient but the family/ caregiver as well. Furthermore, gaining information above and beyond the typical curriculum allows personnel to grow and develop so they can deliver professional pre-hospital care at a higher level.

Eye openers Osteogensis imperfecta (OI) Imagine not knowing someone in your response district had this disease. Accidentally, assumptions could be made accusing parents of child abuse. Now, since we know we can assist professionally and treat not only the patient with dignity and respect but family and care givers as well. Autism Prior to this registry going into effect, We never knew how many people were affected by this situation. Now that we know, our responses can be tailored and care rendered at a higher level of serviceability thus situations do not get out of control in that we, public safety, make things worse. Service Animal Do you have a policy in place where the service animal is taken with the patient? Did you know there are rules dictating service animals? How would your agency handle if a blind person with a dog had a medical emergency on the street corner and needed transportation to the hospital…what would you do with the dog?

Eye Openers (cont.) Bed ridden patients/ Mobility Due to insurance reasons and the need for independence, more and more people are leaving the hospital and finding comfort in their own homes. This presents challenges to public safety if an emergency strikes. Do you know they are there? Imagine doing a primary search at 2 am and finding a bed ridden cancer patient hooked up to feeding tubes and other life sustaining equipment! Not the time to figure this out. Cochlear Implants Many people are able to hear due to a device known as a cochlear implant. Did you know they are magnetic and many remove them at night to sleep. Imagine during your training, entering a burning house you search and yell for the person you are seeking for….no one answers because they cannot hear you. Rare medical cases Many are leaving the hospital earlier than in years past. Due to equipment development and insurance needs families are dealing with debilitating diseases where additional training would benefit emergency personnel. Furthermore advanced directives pose challenges to both family and emergency workers. Knowing prior to arrival reduces the stress and anxiety on everyone.

Why develop a registry? Increasing Population Statistically all aspects of services will increase due to size of your community. Insurance changes /hospital stay decrease Many more people are at home dealing with their situation. Increased expectation that Public Safety provide pertinent services Pre-hospital care must change to be sustainable. Identifying who is in your area of responsibility allows tuning of training needs and the precision to spend funds to meet the customers needs. Knowledge is power! Having the ability to know who you are serving provides the ability to work with local, state, and federal governments to support and subsidize specific programs thus organizations can continue to provide needed services in that specific community. Furthermore, providing education to a specific demographic rather than a canned education program develops a sense of community and involvement within your organization. Responsibility Regardless of who is in the community,(i.e.. rich, poor, young, or old)public safety is responsible. The underserved communities of people with special needs is a niche in society that provides many challenges to public safety…knowing who and where they are levels the playing field.

Benefits Gaining a general understanding Educating public safety personnel only increases their effectiveness. Understanding the needs will significantly assist in developing a well rounded public safety force. Ability to comply with applicable laws Many laws have been developed to protect the rights of people with special needs. Unfortunately limited exposure to the people and their specific issues limits the need to review the laws established to protect this vulnerable population. Gain trust and cooperation This population in general feels that they need to be responsible and take care of themselves. When they see and hear public safety is willing to become educated and assist, they will start and cooperate in future policies and plans. Prevent situation from escalating Understanding the special needs will reduce the stress on the responder and the patient which will lead to a de-escalation of the situation. Helps to avoid costly mistakes In a disaster, lives can be lost in a second. Developing a registry, exercising it, and working through the bugs will reduce the potential for future costly mistakes. Become a responder of choice The community will embrace your services and people will know your capabilities making them proud that you are their pre-hospital care providers.

Potential Training Topics A vast array of topics exists that can be placed into this category. The topics can be generalized or can be fine tuned to meet the needs of the specific community or jurisdiction. Some examples are: Attitudes and Feelings about People with Disabilities. Disabilities Defined. What is the Americans with Disability Act and how does it apply. Seniors and their specific needs People: with service animals with mobility impairments with Autism who are deaf or hard of hearing who are blind or visually impaired with cognitive disabilities with chemical sensitivities who are mentally ill Who have a rare medical condition

Developing a Registry Develop a core committee group to explore the concept. Research the topic – many places in the country now have similar databases. Review and develop a best practice model that is practical for your size Review Ohio Senate Bill 129 section (A) (1) – Allows up to 25,000 dollars to be used on Hardware and Software items to create a database. Reach out and work with others who have a working registry. Once established, work with community partners to locate registrants. Market registry continuously… help the program grow Exercise it…make sure it works for your needs

Contact Information Capt. William Piwtorak office cell