Self-advocacy is essential for individuals with a spinal cord injury (SCI) to learn. As someone with an SCI, it is likely you will encounter situations where others do not fully understand your needs, or abilities. You might even find some healthcare providers are not well-versed about spinal cord injuries. Having a good understanding of your condition and needs, along with the ability to clearly communicate this information, can help ensure you receive appropriate care in healthcare settings. In today’s article, we will discuss some strategies for self-advocacy in healthcare and share resources that can help you hone this skill.
Full Participation in Society: Your Legal Rights
First, understand that you have legal rights as an individual with a disability. You have the right to access the same medical care as anyone else. This means that buildings and exam rooms must be accessible, and all information provided to you must be in an accessible format. If you need assistance, you are permitted to bring a helper. Federal laws protect you from discrimination and require that reasonable accommodation be made for your specific needs. You can learn more about your legal rights here: https://www.cms.gov/files/document/getting-care-you-need-guide-people-disabilities.pdf
Now, let’s talk about some tips that can help you advocate for yourself and get the most out of your doctor’s appointments.
Trust Yourself and Provide Helpful Information
Good communication with a healthcare provider makes it more likely that you will get the correct treatment. Do not assume that your healthcare provider understands the ways that spinal cord injury impacts your health. When you meet a new healthcare provider, explain how your spinal cord injury uniquely impacts you. For example, autonomic dysreflexia is important to explain, as many healthcare professionals may not be familiar with it or know what to do about it if it happens. If you are in a hospital or other setting where you will rely on nurses or CNAs for care, request a time to discuss your bladder and bowel management and skin care routines. Clearly explain what assistance and supplies you will need for these tasks.
Care For Yourself by Being Assertive
Clinics and hospitals can be busy, chaotic places. Sometimes a patient’s needs are not addressed in a timely or adequate fashion. You may have questions or concerns about your current treatment. Feeling unheard can be upsetting, and it may make you angry or nervous about speaking up. However, it is important that you advocate for yourself in these moments. Let your healthcare team know if you feel rushed, intimidated, or have questions about aspects of your care. If you feel that your concerns are not being addressed, ask to speak with a supervisor directly.
Learning assertive communication can be helpful. Try to use “I” statements when speaking with your healthcare providers. For example, you can say “I feel overlooked when nobody brings me the items I need” or “I have concerns about side effects from this new medication and the doctor has not been in to discuss it”. Stay calm but firm. Try to avoid attacking or blaming the health care professionals or losing your temper.
Knowledge is Power, So Ask Questions
Ask questions with the expectation that they will be answered to your satisfaction. If something remains unclear, ask the healthcare provider to explain it again. If you need time to make a decision or think things over, request this. Any concern you have about your health is valid. It can be helpful to write down your questions ahead of time, so you remember to ask them during the appointment.
Respect Your Limitations: Take Notes
Doctor’s appointments can be fast paced. You may be given a lot of information in a short period of time, and some of it may be unfamiliar to you. Remembering everything is not always possible. If you are able, try to take notes during the appointment. Write down your questions, what your doctor recommends, any new medications, follow-up appointments, and what problems you should know about and keep an eye on. For some, mobility issues make writing difficult. You may find it helpful to bring someone with you to the appointment to write things down. If this is not an option, request a printout of all recommendations and instructions after the appointment. Conversely, you can request that certain things be added to your medical record as part of the doctor’s notes so that information is retained for future conversations. You can request copies of your medical record to review at any time.
Get From Point A to Point B Faster: Focus on Solutions
Think about what you want out of an appointment before you get there. For example, if you are interested in trying a medication you learned about online, bring this up at the appointment. Or, if you have a physical symptom that is impacting your quality of life, ask what can be done to address it. It would also be good to ask if there are other options available. For example, are there multiple medications to choose from? Are there other interventions that might resolve the problem other than what you are currently doing?
2 Are Better Than 1: Bring back-up.
Having someone at your doctor’s appointments can go a long way in terms of obtaining the best care. This person can be involved as little or as much as you want. Sometimes just having someone in the room with you will ensure that your questions get answered and your needs are addressed more consistently. Having another person with you can also be helpful in terms of helping you write things down or remember information.
Request Transparent Pricing
In 2021, a law was passed that requires hospitals and clinics to share the price of services or treatments with their patients. Even though it is the law, prices are not always readily available or accessible. If a price list has not been made available to you, ask the facility for a “good faith estimate” for the cost of your care. The “good faith estimate” is a term for the total cost that includes estimated charges for all healthcare items and services, including facilities fees, hospital fees, and room and board. This estimate is your legal right as a patient and can help you compare prices and find services that fit within your budget.
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Disclaimer: This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. For medical advice, please speak with your healthcare provider.
Resources
The United Spinal Association is an organization dedicated to empowering and advocating for people with spinal cord injuries and disorders. They have excellent information on their website about advocacy, ranging from healthcare to civil and legal rights as a person with a disability. You can look at this information here:
https://askus-resource-center.unitedspinal.org/index.php?pg=kb.book&id=24
Facing Disability is an online community for individuals with SCI. They have many resources regarding advocacy for people with SCI, including links to local resources in many areas across the US. They also have an extensive video library with medical expert interviews on disability advocacy as well as videos regarding personal experiences with disability advocacy. You can learn more here:
https://facingdisability.com/resources/advocacy
We also recommend checking out this video published by the Northwest Regional Spinal Cord Injury System. It features conversations with people with spinal cord injuries regarding their experience with self-advocacy. It also contains advice on how to become a self-advocate. You can view this video here:
https://sci.washington.edu/info/forums/reports/advocacy.asp
