My health and function

Understanding Your Disability

Understanding your disability can help you take better care of yourself and be more involved in decisions about your healthcare. It is useful to know proper terms to describe your disability so you feel more confident talking about your disability with new health professionals. Knowing about your disability now and how it might affect you as you get older can also help you to take care of your health and decide when to seek support as an adult.

Benefits of Knowing More

Confidence in Communication

Knowledge gives you the confidence to talk about your disability and express your needs and preferences, whether it’s with your family, at school, during training, or when seeing a health professional.

Better Decision Making

The more you know about your diability, the better you can make decisions for yourself. This includes knowing what to do if you feel unwell and when to seek help.

Feeling in Control

Understanding your disability can help reduce the uncertainty you might feel about transitioning to adult care. The more you know about your disability and how to take care of yourself, the more control you will have over your health.

Easier Management

When you understand why things are the way they are and can fit your treatment into your daily life, managing your disability becomes less frustrating.

Tips for Learning About Your Disability

If you want to learn more about your disability, here are some options you can try:

Create a Health Summary: Consider making a health summary to take with you when attending adult health services.

If you have cerebral palsy, we’ve created a template that you can use to start your Health Summary. Even if you don’t have cerebral palsy, it may be helpful to complete this health summary because many sections will be relevant to everyone.

Spina Bifida and Hydrocephalus Ireland (SBHI) have developed the SBHI app where you can store your appointments, medication, and medical history in one accessible place.

The HSE have developed the Health Passport app to support adults with intellectual disability express their needs when in a healthcare setting.

Mercy University Hospital Cork have developed a “My Personal Health Passport” to provide a snapshot of information about paediatric patients in an informal and easy-to-read manner.

The Royal College of Paediatrics and Child Health have developed the Epilepsy Passport to provide essential up-to-date information about a child or young person’s epilepsy.

The National Autistic Society have developed a “My health passport” to help autistic people communicate their needs to doctors, nurses, and other healthcare professionals

Parents

Your parents have managed your health for many years. Let them share their knowledge and advice with you, and then figure out what works best for you. Ask them questions about your disability, medical history, medications, treatments, and any equipment you use. They can help you complete your health summary.

Health Professionals

Your health professionals can provide valuable information about your disability or help you find it. At your next appointment, talk to them about anything you don’t fully understand. You may find it helpful to ask your doctor or other health professional for a written summary of your disability. It might also be useful to include the types of doctor and health professionals you see in child services, and the reasons why you see them in your health summary. This might make it easier to tell professionals about your experience when you move to adult services.

Websites & Brochures

  • Reliable Sources: Many organisations, professional societies, self-help groups, and charities offer helpful information about the medical, social, and emotional aspects of your disability. Start exploring these resources by checking out the links provided below.
  • Caution: Be careful with negative reports on some forums and blogs. These might be written by people who are unhappy or feeling unwell. Don’t let these reports scare you. Instead, ask yourself why someone might be sharing such a story.

Useful Resources

Here are some trusted organisations that provide reliable information about cerebral palsy, spina bifida and hydrocephalus and other disabilities:

 

Support Situations

Looking after your health is very important as you transition to adulthood. Everyone will show different signs and symptoms when they are unwell or need to see a health professional. Knowing the signs and symptoms to look out for and when to seek help is important. It’s also important to identify situations or activities that could impact your health and function and take steps to prevent issues. Talk to your health professional about your individual circumstances and learn about the occasions when you should reach out for support and how to manage emergency situations. Consider these questions:

  • Do I know who to contact or what to do when I notice a change in my health or function?
  • Am I aware of the symptoms that may indicate I’m unwell?
  • Can I recognise symptoms that require urgent attention and know where to seek care?
  • Do I know who my personal supports are and where to find additional help if needed?

Tips

  • Make a list: Work with your health professional to create a list of signs, symptoms, and complications related to your disability that you should watch out for.
  • Stay on top of your health: Regularly monitor your health status and note any significant changes or symptoms as they happen.
  • Find a health advocate: Identify someone who can help and support you with your healthcare needs when necessary.
  • Add an In Case of Emergency (ICE) contact on your phone. This ensures that in an emergency, the right people are notified quickly and medical personnel have the information they need to treat you.

>>Go to next section: Ways to influence your health and well-being