Advocating for your child in the Healthcare System
Advocating for your child with a disability is important to ensure they receive the best possible healthcare. As a parent, you are their primary advocate and have specific rights that empower you to speak up on their behalf.
What does advocating mean?
Advocating means speaking up for your child’s rights and needs. It’s important to be an active participant in their care and to make sure that they are getting the best possible treatment. As their parent, you are their best advocate, and you know them better than anyone else.
When to advocate?
Advocacy is crucial throughout every stage of your child’s healthcare journey. Here are some key moments when advocacy is particularly important:
- Before procedures. When scheduling a planned admission, call ahead to communicate your child’s specific needs, such as wheelchair accessibility or specialised equipment requirements.
- During procedures. Communicate your child’s sensory preferences and any necessary modifications for healthcare professionals to be aware of. Share your child’s and your own communication preferences to ensure effective communication strategies are used.
- After procedures. If you’re not satisfied with your child’s care, reach out to people within the hospital system that can provide support, help address concerns, and facilitate changes if necessary.
How to advocate
Here are some tips on how to advocate for your child:
- Be prepared. Before you meet with a healthcare provider, make a list of your questions and concerns. This will help you stay focused during the conversation and ensure that your child’s needs are met.
- Be informed. The more you know about your child’s disability and their treatment options, the better equipped you will be to advocate for them.
- Be assertive. Don’t be afraid to speak up for your child. If you’re not happy with the care they’re receiving, don’t hesitate to ask for a second opinion or seek help to make sure your concerns are heard.
- Be respectful. Remember that the healthcare providers are there to help your child. Be respectful of their time and expertise, but don’t be afraid to challenge them if you believe they’re not doing what’s best for your child.
- Be a team player. The healthcare team is there to help you care for your child. Work with them to develop a treatment plan that meets your child’s individual needs and is manageable for you to maintain at home
- Be persistent. Advocating for your child can be a long and challenging process. It is important to be patient and persistent. Don’t give up if you don’t get the results you want right away. Keep fighting for what your child needs.
- Document everything. Keep a record of all your interactions with healthcare providers, including dates, times, names of people you spoke to, and what was discussed. This will help you keep track of your child’s care and to advocate for them more effectively.
- Find a support system. Having a support system of family, friends, or other parents of children with disabilities can be invaluable. They can provide you with emotional support, practical help, and advice.
- Don’t be afraid to ask for help. If you’re feeling overwhelmed or don’t know where to turn, don’t be afraid to ask for help from a professional advocate. Advocates can help you navigate the healthcare system and advocate for your child’s rights.
- Take Care of Yourself. Advocacy can be demanding, both emotionally and physically. Remember to prioritise self-care and seek support for yourself as well. Take breaks when needed and reach out to support networks or counselling services to help you navigate the challenges of advocating for your child.
Here are some tips for parents that are feeling less confident in advocating for their child:
- Find a parent mentor. Talking to another parent who has experience advocating for their child can be a great way to build your confidence. You can find mentors through peer groups, online forums, or even your child’s healthcare providers.
- Start Small and Build Confidence. Begin by advocating for smaller issues or concerns and gradually progress to more significant matters. Each successful experience will boost your confidence, making it easier to address more complex issues in the future.
- Don’t be afraid to ask for help. If you’re struggling to advocate for your child, don’t be afraid to ask for help from a professional advocate. Advocates can help you navigate the healthcare system and advocate for your child’s rights.
- Seek a Supportive Ally. Identify a healthcare professional within your child’s medical team who is understanding and supportive. This individual can serve as your ally, helping you navigate the healthcare system and providing guidance on advocating for your child’s needs.
- Take Advantage of Training or Workshops. Attend workshops or training sessions specifically designed to help parents build advocacy skills. These programs can provide valuable information, strategies, and practice opportunities to enhance your confidence in advocating for your child.
Remember, advocacy is a learning process, and it’s okay to start with less confidence. Over time, with knowledge, experience, and support, you will become more comfortable and empowered in advocating for your child’s needs.
How to Work Effectively with Your Team
The healthcare team is there to help you care for your child. To work effectively with them, it’s important to:
- Get to know the team. Take the time to introduce yourself to the doctors, nurses, and other healthcare professionals who will be caring for your child. Let the team get to know you and your home situation. This will help them tailor any treatment plans to your family’s specific circumstances
- Be open and honest. Share your child’s medical history, treatment goals, and any concerns you have with the team. The more they know about your child, the better they will be able to care for them.
- Be cooperative. The team is there to help you, but you also need to be willing to work with them. Follow their instructions and let them know if you have any questions or concerns.
- Be respectful. Treat the team with respect, just as you would want them to treat your child.
Cultural Sensitivity in Healthcare Settings
Cultural sensitivity is the ability to understand and appreciate the beliefs, values, and practices of different cultures. Here are some tips on how to advocate for your child’s cultural and linguistic needs in healthcare settings:
- Be upfront about your child’s culture and language. When you first meet with a healthcare provider, let them know your child’s cultural background and primary language. This will help them to understand your child’s needs and to provide care that is tailored to their culture.
- Ask for interpretation services if necessary. If you or your child does not speak English, you can ask for interpretation services. Interpretation services can be provided by a trained interpreter or by a family member or friend who is fluent in both languages.
- Be patient and understanding. Healthcare providers may not be familiar with your child’s culture or language. Be patient and understanding as they learn about your child’s needs.
What to Do If You Aren’t Happy with Medical Decisions
If you’re not happy with the medical decisions that have been made for your child, you have the right to ask for a second opinion or seek external support.
- Escalate your concern. If you’re not satisfied with your child’s care, reach out to the nursing unit manager or social workers within the hospital system. They can provide support, help address concerns, and facilitate changes if necessary.
- Familiarise yourself with R.E.A.C.H. If you are not happy with the medical care your child is receiving, you can contact R.E.A.C.H. (Recognise, Engage, Act, Call, Help is on its way). R.E.A.C.H. is a program that helps families who are concerned about their child’s medical care.
- Submit feedback. Each hospital has a process for submitting complaints. Contact the clinical governance unit or visit the hospital’s website for information on how to file a complaint. Be prepared to provide details of your concerns and experiences.
Advocating for your child with disability in the healthcare system is crucial to ensure they receive the best possible care.
It’s important to remember that you are your child’s best advocate. Don’t be afraid to speak up for their needs and to seek out the best possible care for them.
By understanding your and your child’s rights, effectively communicating with healthcare professionals, and seeking support from the appropriate people, you can become a confident and empowered advocate for your child’s healthcare needs.
Remember, you are the expert on your child’s needs, and your voice matters.