1. Buy a hard cover notebook and write the date at the top of the page every day. Carry it everywhere and write down the name, number and title of everyone you speak to in relation to services for your child. Just producing this book and asking for the name of someone you are talking to can be enough to ensure they follow through on your request.
2. Photo copy every letter, every referral and every report 10 times and store it in a portable concertina file. Bring this file and a stack of brown A4 sized envelopes to every appointment.
Do not let “I havent got a copy of the report/letter/referral” or “Someone else has your file and they have gone home, on annual leave or locked it in a filing cabinet and taken the key home”* be the reason you are not getting moved up the list.
When you are told this, reach into the concertina file, extract a copy of each report/referral/letter and place it in the brown A4 envelope. Write the name of the person you are talking to on the envelope, and hand it to them. Smile. Wait.
3. Buy a second concertina or a lever arch file and store all your correspondence with Health Dept’, Dept of ED, Department of Social Welfare and any T.D or councilor in this file (letters To and From). Make copies of these and always keep the original.
4. Use your hard cover note book and your correspondence file to support your cause.
Begin with the phone call to check who is responsible and what is the correct address. Then write to them using registered post. Keep a copy of your letter and phone them a week later to check if they received it. Note this in your book. Phone them the following week to check again and check on action. If you remind them that is what they said last week you might get a little bit further along the line.
Phone calls alone will not get you anywhere, especially with regard to the Health Service. So the rule is Phone, Write and Phone Again.
5. If you are really getting the run around and not getting any correspondence back from the people you are trying to deal with; keep a record of that. Buy an old fashioned hard cover desk diary and note down, immediately every interaction you have with that office or professional, including all the times you rang and it rang out, all the times you left a message with whomever (ask how to spell their name, scares the shit out of them) and then call back next day saying that you left a message with so and so yesterday. A diary that has been filled in accurately at the time of each event is a legal document.
6. Be polite, friendly and grateful when you are helped. You catch more flies with honey than vinegar. This is especially important in the current climate where the people you are dealing with have had their wages and pensions cut and may not be feeling happy themselves. They do not write state policy, they just have to implement it so don’t take it out on them. However, DO be persistent. Every time you get disheartened, go back to your little book and check who hasnt helped you yet. Then call them.
7. A door is never closed without another being opened. If someone says they cannot help you, ask them to write a letter of support to the authority that can.
8. Wear Lipstick. Brush your hair. Don’t look like a victim or when you look in the mirror you will see a victim. If you have an important meeting to go to, get your hair done and wear the best clothes you have. That way you will feel the equal of everyone in the room and will be treated that way.
9. Join an advocacy group and start networking. You need a sponsor to get you through this, someone who knows more about it than you and who understands the pitfalls.
Whether you are ready to identify as a member of a minority disability group or not, get in touch with your advocacy group, reach out to a network and start asking for help – you’ll get it, I promise.