When young people turn 18, a lot happens. Adult responsibilities and decisions can feel scary and confusing for the unprepared. Becoming responsible for medical care is part of growing up, and that process is so critical that there’s a specific name for it: healthcare transition.
For example, at age 18 a young adult is responsible to sign official paperwork to authorize procedures or therapies. They must sign documents to say who can look at their medical records, talk to their doctors, or come to an appointment with them. Those rules are part of HIPAA, which stands for the Health Insurance Portability and Accountability Act. HIPAA is a federal law that protects confidentiality, regardless of disability.
In this video, young adults living with various disability and medical conditions talk about their journeys in the adult healthcare system. They talk about how they make decisions and how they ask for help. Their ability to explain their needs, make decisions, and speak up for themselves is called self-advocacy. Take a look and listen to what they have to say in their own words!
PAVE also has a Healthcare In Transition article that will give you detailed information for individuals transitioning from Pediatric (Children’s) to adult health care including information on health insurance and providers.
Including Health Considerations in the Transition Plan
Parents, Students, and everyone on the IEP team should think about how health and healthcare can affect a student’s goals for college, work and living on their own. PAVE has made a fillable form that you can download when starting to think about this area in transition.
Virginia Commonwealth University offers an Emergency Preparedness Tool Kit for People with Disabilities through its university center called Partnership for People with Disabilities. The downloadable, 29-page booklet includes checklists and resources.
The Federal Emergency Management Agency (FEMA), an agency of the United States Department of Homeland Security, also provides a downloadable brochure: Preparing Makes Sense for People with Disabilities.
Military families, each installation has a Comprehensive Emergency Management Plan (CEMP 10-12). Read on for links to specific military resources.
This article includes a variety of resources and ideas about how to be informed and organized, with a disability-specific toolkit and emergency plans that are ready to roll if something unexpected does occur.
Full Article
COVID-19 has highlighted a need for emergency planning, and Washington State families might consider additional contingencies to plan for: winter snowstorms, flooding, wildfires, volcanoes, earthquakes…. The planning can alleviate stress and create a sense of confidence that a plan is in place for everyone’s safety if something unexpected does occur.
To be fully prepared, a family may need an emergency plan and a survival kit to support to a loved one with additional needs that are specific to a disability. Following are guidelines for getting organized and ready, with each person’s individualized needs in mind.
While building an emergency plan and toolkit, families may need to consider how to include tools and strategies for providing a sense of comfort and safety for individuals with anxiety, sensory needs, or behavioral challenges. A favorite blanket, stuffed toy, or noise cancelling headphones might be part of the kit. A handheld electronic device might provide a sense of normalcy; if one is included, be sure chargers or batteries are also part of the toolkit.
Gathering the toolkit ahead of time can enhance a sense of calm and save time when quick action is needed. Family to Family Health Information Center at PAVE has a page set up with tools and links around disability and special healthcare needs.
Be informed
Some disaster scenarios include sheltering in place, and others require movement to a safe location. The Red Cross provides information on a page titled Be Informed to help determine which types of emergencies are most likely in a designated community. Some areas are more prone to forest fires, floods or earthquakes, for example. Consider whether local public systems share information or alert the public if something is happening or about to happen. Will there be a telephone alert or a broadcasted siren? Will there be an emergency broadcast to tune in? The Emergency Alert System (EAS) includes a statewide list of radio stations that broadcast emergency alerts by area.
Consider whether there are shelters nearby, or an evacuation route. The Red Cross encourages people to download the agency’s mobile app to receive local alerts that can include emergency-specific instructions in real time. The agency also provides a page dedicated to disaster safety that takes a step-by-step approach for people with disabilities. Included are guidelines for creating a personal assessment and registering with a local emergency assistance program.
You can also download the FEMA app to get weather alerts from the National Weather Service for up to five different locations.
Make a plan
Create escape routes that are accessible to everyone within the household. Choose a meet-up spot after everyone has evacuated the home, property, or neighborhood. Consider accessibility based on the entire family’s needs: For example, will someone need to arrive at the meet-up spot by wheelchair? If someone will need a helper to evacuate, designate a helper and a back-up person to provide that support.
Tell emergency contacts about the family’s plan. Consider telling neighbors or nearby friends about where medications or mobility assistance devices (crutches, wheelchairs, walkers) are stored in case help is needed to get those things. The plan includes what may happen before, during and after a disaster.
The Red Cross provides a template for a 3-step plan, to be shared and verified with everyone who might be involved or recruited to help:
All household members discuss how to prepare and respond to the types of emergencies most likely to happen where they live, learn, work and play.
Identify responsibilities for each member of the household and plan a way to work as a team.
Practice as many elements of the plan as possible.
Military Families
Military families may have unique and specific concerns. Each installation provides support for a Comprehensive Emergency Management Plan (CEMP 10-12). Additionally, families might seek assistance from the family support office through the Exceptional Family Member Program (EFMP) or a Family Resource Specialist (Coast Guard).
Here are additional places to seek information about emergency planning for military families:
