Stroke Survivor

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 Fairfax Caregiver

Getting What You Need From the System: Tips for Advocating
by Stephanie Mensh

When my husband, Paul Berger suffered a stroke we were both in our 30's, established in our careers, and planning for the future. We wanted to continue our active lifestyle, which meant overcoming Paul's disabilities and pulling services out of many different organizations, each with their own roadblocks. I became Paul's advocate. Here are my tips for successful advocacy to get what your survivor needs from the system.

There are three types of advocacy: (1) personal advocacy by individuals, family members, friends or others to obtain benefits and services from public or private service providers; (2) political or policy advocacy by lobbyists and concerned citizens to change government systems; and (3) legal advocacy by a lawyer to navigate legal processes.

Personal Advocacy

Most caregivers learn to be personal advocates by on-the- job training, usually starting with hospital, medical, and therapy providers, then health insurance. Here are some tips to help you improve your personal advocacy:

1. Make a written list of your needs and questions, and go after the most important first.

2. Research as much as possible from insurance policies, medical brochures, treatment plans, and other sources.

3. Talk to other caregivers and ask for advice, especially for the names and phone numbers of people who were helpful to them.

4. Call and ask for the person or department that specifically handles the services or questions you need answered. Ask for the exact spelling of that person's name.

5. Write down the date, time, person's name, and topic discussed in any phone calls. Keep this in a file with your other materials and research.

6. Be persistent. This may mean calling every day. This may also mean asking another family member or friend to call on your behalf.

7. If you feel that your questions are not being answered, or you are not getting the appropriate services, find an outside professional, agency or organization that can intervene on your behalf.

Political Advocacy

Finding services for stroke survivors can be challenging, especially once the "acute" phase - the immediate hospitalization - has passed, since the types and costs of available services vary so much from one area to another.

When you need services that are not provided in your area, you may need to change the system -- by translating your personal advocacy skills and passion into political or policy advocacy.

You can start by writing letters or emails, and visiting your elected officials or their staff. You can do this on your own, with your survivor/family member, and/or with other caregivers and survivors. Your local city, county and state officials want your vote in November -- so do your US Congressman and Senators.  They want to hear your concerns and find ways to help.

The first step is to learn about your elected officials -- who they are, where their offices are located, how to contact them, and details of their policy interests.  For example, learn what committees they serve on, and what bills they have drafted, supported, and voted for.  Most have web sites with this information, and their offices will answer questions and mail you additional material. For the US Congress, click here.

Every Spring, we participate in the American Heart-
American Stroke Association's Lobby Day in Washington, DC, and continue our advocacy from home as part of the AHA/ASA's "You're the Cure" grassroots network -- an easy way to stay informed on state and national issues.  To join, click here

Legal Advocacy

Sometimes the only way to get the services or resources you need is by taking legal action with the help of a lawyer.

Legal advocacy does not necessarily mean going to court. Most often, a lawyer can advocate for you through telephone calls and correspondence. Most legal actions relate to contract or financial problems, such as insurance companies paying claims, or negotiating with creditors to prevent foreclosure or bankruptcy.

When Paul had his stroke following brain surgery, we decided to refinance the mortgage on our house. Our lawyer prepared a "power of attorney" so I could attend settlement alone, since Paul was too ill to leave the hospital.

Since lawyers specialize in different areas, look for one who specializes in your particular problem. Ask your family lawyer to refer you to a specialist, or contact the local bar association, or local legal aid organization. The American Bar Association has online referral links.


Copyright (c) Paul E. Berger & Stephanie Mensh
Permission is granted to reprint this article
in your newsletter or magazine only with the following byline
“Paul Berger is a speaker and author.
To find out more about his programs and services,
or call (703) 241-2375.”

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