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SELF-ADVOCACY

Self-advocacy means that a person makes an informed decision about a matter of importance to her or him, and then takes responsibility for bringing about the change necessary to make that choice a reality. Some ideas for establishing relationships with agencies in the process of self-advocating are as follows:

• Be respectful but firm with your needs.
• Treat agency staff the way you want to be treated.
• Be persistent and ask for clarification.

While most agencies must respond to requests within a certain time limit, it does take time for the process to occur. Be patient and ask for clarification if you don’t understand the process or need more information about the matter.

• Know your rights.
• Keep good records.
• Request written confirmation of kept promises, timeline or denial.

Self-advocacy is an act of directly representing yourself in a way that will be perceived as assertive and not passive or aggressive. In the past, it has not been customary for people with disabilities to challenge the power of authorities; thus being a self-advocate and asserting rights and needs can be quite alien. However, all people have the right to self-determination, even if it goes against professional judgment. Ultimately, each person is the expert in what is needed and useful, so go ahead and ask for it.

Making the most of your doctor visits

When planning to visit a physician about you or your child’s symptoms of tuberous sclerosis complex (TSC), there are some things you can do, and know, to be better prepared.

KEEP A JOURNAL:

• of troublesome symptoms.
• of all medications currently being used, and those that were changed (include dosage size and time). Include any side effects of previous drugs.
• of all vitamins, supplements, over the counter medications and alternative therapies you are using, or have used.
• of symptoms, concerns or new observations (ie. seizures, sleeping difficulties, or behavior changes). Try to be as descriptive as possible, especially when describing seizures.

NOTE: The Tuberous Sclerosis Alliance offers several journals for parents and adults to track the above information:

PLAN TO TAKE THESE ITEMS ALONG:

• Health insurance card
• Social security card
• Addresses and phone numbers of family physicians
• Pen and paper to write down any new information, or answers to questions you take with you
• A copy of the latest TSC treatment recommendations (i.e. "Revised Diagnostic Criteria" or "Diagnostic Evaluation," available from the TS Alliance)

ASK QUESTIONS:

There are NO dumb questions. Inquire until you are comfortable and satisfied. Some questions you may want to ask your physician are:

• Do you have experience treating people with TSC?
• How long have patients with TSC been under your care?
• What are your credentials?
• What is the treatment plan you offer or suggest?
• What tests should be done next?
• How long should we wait to see if this medication/therapy works before we try a new one?
• Is this the only option available?
• What other options are used to treat these symptoms?
• What do we need to look for or be aware of?
• When should we visit you again?
• What additional information can I provide that will help you offer the best care?

REMEMBER:

• that your physician is your paid consultant, and part of the team you need to organize to obtain the best care possible.
• to be respectful, but do not be intimidated.
• to be wary of any medical professional that tells you, "Don't worry, you just don't understand."
• to educate yourself as much as possible about TSC.
• not to underestimate the value of networking with other people who have been through similar situations.
• to always consult with your doctor prior to making any medical care changes.
• that you are always entitled to a second opinion.
  

Getting a Medical Bracelet

Individuals with TSC  who are taking medication or who have medical conditions that require special care in emergency situations should think about getting a medical bracelet. A medical bracelet provides paramedics with pertinent medical information if/when you are unable to speak clearly about medical conditions, allergies or special needs. Identification bracelets can help you or your child receive fast, accurate treatment in emergencies. Medical tags are also available in the form of a charm, anklet or watch, although the bracelet is the most common form. The following Web sites can provide you with more information:

MedicAlert (www.medicalert.org) -- Membership is $35 for the first year and $20 each year thereafter. Membership includes a stainless steel bracelet (with an option for upgrading to designer bracelets) and access to a 24-hour emergency response service. MedicAlert provides a "call-collect" number for medical personnel, so they can get more specific information about your medical condition as well as contact numbers for your physicians.

Medic Assist (www.medicassist.com) -- This company offers charms, bracelets and watches.

Medic ID’s International (www.medicid.com) -- More charms, bracelets and other jewelry.  

Oneida Nameplate Company (www.oneida-medical-jewelry.com) -- Another option for charms, bracelets and other jewelry.