Stephanie Mensh


Our series on Patient Advocacy kicks off with today’s post.  Over the next week, we will hear from a variety of women about their personal journeys and professional experiences.  Early in September we will compile these posts, along with our August Man of the Month’s and blog talk radio interviews, into an e-book.  As always, we look forward to your comments.



By Stephanie Mensh. When my husband, Paul Berger suffered his 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) legal advocacy by a lawyer to navigate legal processes; and (3) political or policy advocacy by lobbyists and concerned citizens to change government systems.

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:

  • Make a written list of your needs and questions, and go after the most important first.
  • Research as much as possible from insurance policies, medical brochures, treatment plans, and other sources.
  • Talk to other caregivers and ask for advice, especially for the names and phone numbers and emails of people who were helpful to them.
  • 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.
  • 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.
  • Be persistent. This may mean calling every day. This may also mean asking another family member or friend to call on your behalf.
  • 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.

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, enforcing federal protections regarding employer’s sick leave/family leave  policies, or negotiating with creditors to prevent foreclosure or bankruptcy.  If you have been denied social security disability or other benefits, an attorney can file an appeal.

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

Attorneys 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:

Don’t wait for a family crisis.  It is never too early to have a will, a power of attorney for financial/business affairs, and a power for health matters, as well as a living will that will provide instructions on life support if you become critically ill. 

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.  Speech and physical therapy are often limited, and vocational rehabilitation services and related case management may have waiting lists.

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. 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. You can do this on your own, with your survivor/family member, and/or with other caregivers and survivors.

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,

My volunteer efforts led me to an appointed position on the local citizen advisory committee that oversees the county’s human services programs.  I have a voice to support programs for people with disabilities, which has become crucial during these times of state and local government cut-backs.

On the state and national level, Paul and I 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, visit:

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