The Basics of Self-Advocacy

Help achieve your best possible health outcomes by becoming a strong self-advocate.

Written by Maggie Baumer, Esq.

The ability to express your needs, desires and concerns in relation to your health and the care provided to you can be a tremendous help to you as you navigate your recovery from amputation.

In order to achieve the best possible health outcomes, it is important to be an advocate for yourself with insurance companies and healthcare providers. Only you know all the details of your history, your needs, and the resources you’ve looked into.

Resources 

There are many resources available to amputees to assist you in the physical, emotional, mental and vocational aspects of amputee recovery, but you will need to be proactive in identifying the organizations that best meet your needs. The services and programs available in your community aren’t always provided by the same (or most logically named) agency, and it might require a little investigation on your part to find them.

One such resource that often requires a little investigation is finding you State Vocational Rehabilitation (VR) agency. These agencies provide a wide variety of services that help people with disabilities return to work, enter a new line of work, or enter the workforce for the first time.

Keep Meticulous Records

It can be helpful to dedicate one or more boxes to storing records on your “case,” and be sure to organize it well. You could have dividers for health insurance documents, bills, Social Security documents, credit cards, loan documents, state agency information, etc. It is also helpful to keep the records within each file organized chronologically.

You should also keep full copies of all documents that you fax or mail to an agency, including the sheet verifying that the fax was received or a copy of the postage. In addition, you may want to send documents via certified mail so that you receive proof of when documents are received by the agency you are sending them to, and the date on which the agency received it. Record first and last names of individuals you speak to on the phone as well as their ID numbers, if applicable. (Some customer service agents will have ID numbers and others won’t. You can ask them if they have an ID number if you’re not sure.)

Managing Relationships with Your Providers

Choose providers with whom you feel comfortable. You will likely be speaking about sensitive topics like hygiene and the circumstances of your amputation regularly.

Build a good rapport with your providers, as you will likely be seeing them regularly. Treat your providers with respect and appreciation, and keep them informed–your providers can also be some of your best advocates in terms of obtaining the care and devices you want and need, but they can only do so if they know what those needs are.

Soliciting Support from Others

Part of being a strong self-advocacy is knowing when to ask for help!  It can be very useful to have a trusted family member or friend act as a support to you. If you keep this person in the loop, they can understand your needs and advocate for you, too. For example, having a family member accompany you to appointments means they can remind you of questions you wanted to ask and help you remember things that were discussed.

When choosing a friend or loved one to join you at a medical appointment, make sure you are both comfortable discussing sensitive topics. 

Appointing a Power of Attorney

You can also formally designate others to be your legal proxy under certain circumstances, like if you are applying for Social Security Disability benefits. Having a second set of eyes and ears is helpful in each of these circumstances.

In the case you become incapacitated by our injury/illness and unable to take care of your finances or other personal responsibilities for a period of time, it can be helpful to appoint a trusted family member or third party to act as your Power of Attorney. A Power of Attorney is a legal instrument authorizing one person, known as the “agent,” to act on behalf of another person, known as the “principal.” A power of attorney can be general (providing broad spectrum authority to the agent) or limited (restricted to certain circumstances or to a certain timeframe). This arrangement can be terminated or updated in the future.

A limited Power of Attorney situation may make sense, depending on your needs. Since the Power of Attorney will have legal authority to act on your behalf, it is very important that you choose someone trustworthy who will act in your best interest.

Here are some questions to ask yourself about any person you are considering as your agent:

• Do you trust this person with your important financial and other legal affairs?
• Is this person financially responsible?  How do they manage their own financial and legal affairs?
• Will the potential agent charge you a fee?  Family members usually perform the service for free, but if you pick a lawyer or accountant, a fee is usually involved.
• Will this person agree to serve as your Power of Attorney agent? You should discuss your decision with them and they should agree before you officially appoint them.