The following suggestions come from experienced parents with a special needs child.  We hope this information will educate and assist you to some good resources that are always not at your fingertips.   

As the parents of a vent dependent child, we have been through a lot of situations that seemed endless.  If you have a special needs child, you completely understand the constant stream of things to be done and battles to be fought on behalf of your child.  We were asked to sign a DNR (do not resuscitate) order for our daughter early on, because she wasn't going to make it to her first birthday, she is now almost 4. We have been through numerous situations with various organizations (insurance companies, their attorneys, the SSA (social security act) etc.) to get what we need for our daughter's care. Most of these things we just assumed would be covered or 'just happen' if you are good people, work hard, pay your taxes, have insurance and have a sick child everything you need will be taken care of; that was the first lesson learned. We spent a huge amount of time early on trying to find the information we needed and found that it really was not readily available. Listed below are some of our top suggestions for parents with special kids, we hope this helps you in some way.

 "I would like to thank one of our very special moms who compiled this list for us!"

1. Build a support network. Make a list of the people that have helped with information or contacts in the past and don't be afraid or embarrassed to call on them again for help.  Information sharing is very important.
2. Surround yourself with only the best doctors. If you need a specialist, ask for a referral from your doctor.
3. If your insurance company doesn't specifically cover a particular doctor or specialist, call and negotiate with the insurance company to pay an out of network provider at in-network rates. Tell them your child's difficulties can only be handled by THIS doctor and back up your request with letters of medical necessity.
4. Take a little time for yourself or you will lose your mind and possibly your relationship. Easier said than done, I know. You can make it happen. Try as hard on this as you do caring for your child.
5. Have a backbone with your insurance company. Get a case manager and lean on them for what you need. DO NOT continuously call the customer service line and talk to 15 different people. Get yourself ONE contact. All insurance companies have case management systems in place. (keep in mind, case managers are typically 'for' the insurance company though.  So, be careful about what you say, just state the facts of what you need for your child.  Do not get personal with them.
6. Read your insurance policy; make sure you understand the terminologies used. Put it down and read it again with an open mind. Look for benefits that can be converted to meet your needs. Example, if your policy does not cover private duty nursing at home, but does cover skilled nursing facility hours; the insurance company can convert these to home hours. The insurance company will never volunteer this information. If they get you to give up, it's cheaper.
7. Don't be afraid to ask for second opinions.  99% of insurance companies are liable to cover 2nd opinions.  You must clearly explain to the 2nd opinion doctor that they are your "2nd opinion" appt.  Most good doctors are not going to be offended by your position and/or request. Trust your instincts.
8. Make a list of questions and concerns prior to any appointment.  Keep in mind; there have been studies where doctors only retain the first 11 minutes of what you say.  Please, please....get your 3 primary concerns out first and do not ramble.  Don't get personal, just state facts.  Doctors have busy schedules and many patients.  You must help them in clearly stating your information quickly and clearly.  It will only help both of you discern the best care for your child.  You will forget something if you don't write it down in advance. Take notes. Don't be afraid to ask questions if you don't understand what you're told.
9. For school questions and concerns -- www.wrightslaw.com - Authors Pete and Pam Wright have several books to help with "SMART" IEP's, Education Advocacy, Special Education law. The website is also very helpful in linking to other educational and state organizations. Price check local books at your local bookstore before paying website price.
10. Always read the inserts from your pharmacist on drug interaction and side effects. Ask questions of your pharmacist. 
11. Make a medication list and update it as it changes, include dosage, times, medication strength, etc. If you are hospitalized, take it with you to give to them. This will keep you from having to travel with your meds.
12. As soon as you can (without causing any medical problems etc.) try to get as normal as possible. Take your child out of the house. If traveling with equipment is troublesome, set up one day per week that you know in advance you will be going out and make yourself get out. It will be good for you too. Normalcy is relative -- make your own definition.
13. Find out if your insurance policy is 'self funded' or 'fully funded.' Self-funded policies will say in your benefits booklet that Blue Cross Blue Shield (example) is the 'administrator' only of the policy. This basically means your employer is your insurance company. Read on carefully about who has the right to make decisions concerning your care. Some will give rights to the administrator and some to the 'policy owner' (your employer). It is nice to know who you are actually negotiating with. Federal Government laws loosely govern self-funded policies. Fully funded policies will refer to the insurance company and no other 'administrator', they are under the jurisdiction of state government and complaints can be filed with the Texas State Board of Insurance.
14. If you have problems with a government agency (like the SSA), don't be afraid to write your local congressman or state representative for help. Let this be your last form of recourse so they know that you have tried everything else.
15. Keep a paper trail when dealing with schools, insurance companies, government agencies or anyone else. Include names, dates and what was discussed. Note on your calendar follow up dates if needed.