How to get ahead in the business of getting a service
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 of referral and 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/your file" be the reason you are not getting moved up the list.
3. Buy a second concertina file 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 councillor in this file (letters To and From). Make copies of these and always keep the original.
4. Use you black note book and your correspondence file to support your cause.
If you write to someone keep a copy of your letter and phone them a week later to check if they recieved it. Note this in your black book. Phone them the following week to check again and check on action. If you remind them that is what they said last weekyou might get a little bit further along the line.
5. Use a cc-: list to ensure that everyone knows that everyone else knows about your letter.
Human nature being what it is - we all act differently when we think we are being watched (next time you are at the traffic lights, look at the driver behind you and watch him a) pick his nose, b) squeeze a zit or c) pluck out individual grey hairs from the crown of their head and allow them to drift out the window (my personal favourite)
The list can be as nebulous as you like, take it all the way up the line to ministerial level if needed, but also include key workers who should be focused on your issue. And send a copy to everyone on the list.
6. Be polite, friendly and grateful when you are helped. You catch more flies with honey than vinegar. But above all be persistent. Every time you get disheartened, go back to your little black book and check who hasn't helped you yet.
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 disabiltiy group or not, get in touch with your advocacy group