Advocating for Your Child with Disabilities
How to advocate successfully for services and information you need when your child has severe disabilities.
By Miriam Edelson, author of Battle Cries: Justice for Kids with Special Needs.
One of the most helpful bits of advice I received during my son's very early days came from his pediatrician. She urged my spouse and me to consider three distinct but related sets of needs:
What did our baby need? What did his father need? What did I need? Of course we were totally focused on our son and his needs always came first. But as we moved through crises and different sorts of decisions about his care - from allowing a feeding tube to be inserted to how may weekend visits to his residential care facility we would make once his little sister was born - it made sense to apply this approach.
Locating services can be difficult and stressful. It helps to be organized no matter what situation you face with your child. You will want to a: maximize the information you have about your child's needs, b: keep accurate records and c: be very persistent. Remember, you have the right to know.
Here are some general tips:
Before you make call, jot down a list of questions with spaces in between for answers.
When you speak with someone from an agency, ask them about community resources such as organizations that can send you specific information on seizures or hearing impairment, for example. Almost every disability identified has an organization that works with families and also advocates on their behalf. Ask the person you contact for the names and phone numbers of such organizations or support groups in your area. Your doctor's office may also have this information, but don't stop there. It is in the community that you will find the most help.
Use a notebook to record all contacts you make and what you are told. You may be referred to another person or agency. Write down names, job titles and phone numbers. Even if these don't seem helpful right away, you may need to circle back and use they later.
If the agency you call operates in a language in which you are not fluent, ask someone else to make the call. Is there a family member or friend who can accompany you to an appointment and act as an interpreter?
Then, tell the agency you need a language interpreter. In urban centers, some agencies keep lists of people who for example, speak Punjabi or Italian, English or French. Often this person is a volunteer - there may be no cost involved. Ask around. Be persistent. You are entitled to assistance in the language in which you are comfortable - especially when learning about your child's diagnoses and proposed care. It is also important that you can explain your child's (and family's) needs.
Ask if the agency or professional with whom you are meeting has any written material you can take home.
Ask for the person's business card and keep these in your notebook or file. It helps to have a pencil case or pouch in which you can put all the different cards or scrap of paper on which you jot down information.
As you learn about resources in the community, add these to your notebook so you can access them as required.
Keep files with any medical records or treatment plans your child's doctor or physiotherapist, for example, develops.
Ditto for school files such as guidance counselors' and teachers' reports or recommendations.
Find a way to sort you files in a box or file cabinet so that you can access them when needed. You may need information about medications and therapy programs as your child grows up. If you organize these as you go, you won't need to relay on memory alone.
The internet is full of information about support and service organizations. "Google" is a great search engine for finding contacts and groups. But be choosy about the sites you trust; not all information is reliable.
Find someone to help you. If you have a partner, delegate: ask them to keep the files organized, for example. Or insist that they put the child(ren) to bed a few nights each week so you can go on-line at home or at the public library. These activities are also part of parenting your special needs child.
Reach out! You will find people in similar situations who can help guide and support you.
If you are on your own (or your partner is not as helpful as you would like), reach out to a sister or brother, a friend or workmate. You do not have to handle research and advocacy work and care for your child all by yourself. People are often willing to help out, they just don't know how. Tell them. Maybe someone else could go on-line or make a few calls.