Tips to Help You Advocate
It took me awhile to realize that the squeaky wheel really does get the oil! After hundreds of doctor appointments, therapy sessions and lab tests, here's some simple tips that helped me to navigate the scheduling waters and ensure my daugther gets the best appointment time - every time! Oh yes... read on!
These simple strategies helped me. I hope they help you, too!
1) Be nice! Yes, it is hard to be nice when a doctor your child needs to see can't schedule you for six-months! Never forget that the administrative staff is a gatekeeper. Please, thank-you and patience will serve you well in getting that next appointment! (even if the first one did take longer than you had hoped for)
2) Ask to be on a cancellation list! AND always accept those cancellation appointments. I've found that the more responsive I am, the more likely I am to get a call back for a future cancellation. If there is not a cancellation list, ask about a waiting list. In addition, I remember my manners but I tend to call, "just to check-in". I chalk it up to being the neurotic Mommy and most of the time they say they understand and they would do the same thing if it was their kid. Be fierce!
3) Can't get a Dr. appointment - ask to see a nurse! Doctors are great. I respect them and the challenges they face trying to keep up with Moms like me. But do you know who I really love? Nurses! They take my calls. They understand my frustration. And they can route messages to the Dr. using the correct medical terminology. I have been saved by many a nurse, especially in the GI clinic at Radys.
4) Always get business cards! They don't typically hand them out - but they are accessible at the front-desk of most offices. We always get the cards of both the nurses and the doctors. We even ask for direct extensions. (I'm sure some nurses have regretted supplying me this information...but it has helped us navigate the murky waters many times).
5) Chart your child! Sounds simple but keeping it current is the key. Cecily has 13 doctors that we flutter between. We have a simple card with all of her relevant information. We make a copy for every doctor. Be sure to include a clear description of you child's history, a short description of the problem, a list of questions to ask throughout the care process, and a list of medications and prior treatments.This provides them a very clean summary and prevents any confusion about past hospitalizations, medication changes, growth changes etc. While electronic medical records have come a long way, We've found our quick cheat sheet about my daugther is the best!
6) Invest in a filing system and a great personal calendar! There will be a lot of paper in your future! Start early and create a file that enables you to keep track of everything from medical records to receipts, prescriptions to appointment reminders. This is important for keeping track of your child's medical condition and keeping track of your bills for tax purposes.
7) Take Videos! The expresion "a picture is worth a thousand words" has never been so true! We kept telling the doctors, nurses and anyone who would listen how uncomfortable our daughter was and how we couldn't console her despite our best efforts. We decided to show the doctors what we meant by "fussy", "uncomfy" etc. It made a HUGE difference! When they could see first-hand how distressed Cecily was it changed how they treated her condition. In addition, we have found the videos helpful in the Emergency Department (for quickly explaining odd movements) and for sharing with her other doctors that may only see her every six-months. If your child suffers from seizures, it can help doctors identify if it is something to worry about - or something to dismiss every easily.
8) Be Honest (ie. exaggeration of problem in hopes of more help - not a great idea!) You know what I'm talking about... I've discussed this with Moms of kids with medical challenges. You want to keep the focus on your child and you don't want your doctor or nurse to dimiss your concern as "nothing to worry about..." But at the end of the day, you need to trust your doctor. Be direct about the challenges your child is facing and document all symptoms (when it started, how long it lasted), behavior changes (weight gain/loss, mood, energy changes), vomiting (frequency amount), sleep patterns (# of times waking etc.) Try not to play doctor by guessing at what it can/may be. Let your data speak for itself. It will provide your doctor a complete picture and help to identify the root cause of the problem.
9) You can never say Thank You too many times! As a family, we were actually astounded at how rarely some of the nurses and doctors get thanked! We've found that a simple, from the heart message can really show the staff how much you appreciate the work they are doing for your child. I'm not one to say do something to get something! We just think it makes for a better relationship. (And if it helps your child get that extra special treatment... well that's just icing on the cake).
10) Know Your Legislature and Your Child's Rights! The Execeptional Family Resource Center is committed to making a difference in the lives of families and individuals with disabilities and or special needs. Check out their site and you'll find a complete list of links to advocacy and legislative websites. You can help your child by getting involved in the issues that impact your child and his or her future. Get active & advocate!
11) Understand Your Insurance Policy Take the time to review your insurance policy in detail. This will help you for a variety of reasons. First, you'll know what, if any, authorizations are necessary before you can 1) see a specialist, 2) schedule a procedure, 3) what labs you can use and more! If you understand your benefits you can make sure your insurance policy is working for you - and not against you! ALWAYS call and dispute denied claims. We have found several mistakes and charges for items that should have been covered under our policy. It may take a few phone calls to resolve, but this is much better than paying for something that you didn't have too. Rady's Financial Services has been very helpful in helping us resolve issues with our insurance company. If you are confused about charges or have questions about why something may have been denied, don't be afraid to ask someone from Rady's Financial Services to get on the phone with you to speak to your insurance company. We have done this and it saved us many, many hours! If we have an issue with another provider in the future, we're going to follow this same approach. They understand the lingo and they can help you advocate for yourself. There is enough stress invovled in raising a child with special needs. Don't let insurance add to your burden!
These simple strategies helped me. I hope they help you, too!
1) Be nice! Yes, it is hard to be nice when a doctor your child needs to see can't schedule you for six-months! Never forget that the administrative staff is a gatekeeper. Please, thank-you and patience will serve you well in getting that next appointment! (even if the first one did take longer than you had hoped for)
2) Ask to be on a cancellation list! AND always accept those cancellation appointments. I've found that the more responsive I am, the more likely I am to get a call back for a future cancellation. If there is not a cancellation list, ask about a waiting list. In addition, I remember my manners but I tend to call, "just to check-in". I chalk it up to being the neurotic Mommy and most of the time they say they understand and they would do the same thing if it was their kid. Be fierce!
3) Can't get a Dr. appointment - ask to see a nurse! Doctors are great. I respect them and the challenges they face trying to keep up with Moms like me. But do you know who I really love? Nurses! They take my calls. They understand my frustration. And they can route messages to the Dr. using the correct medical terminology. I have been saved by many a nurse, especially in the GI clinic at Radys.
4) Always get business cards! They don't typically hand them out - but they are accessible at the front-desk of most offices. We always get the cards of both the nurses and the doctors. We even ask for direct extensions. (I'm sure some nurses have regretted supplying me this information...but it has helped us navigate the murky waters many times).
5) Chart your child! Sounds simple but keeping it current is the key. Cecily has 13 doctors that we flutter between. We have a simple card with all of her relevant information. We make a copy for every doctor. Be sure to include a clear description of you child's history, a short description of the problem, a list of questions to ask throughout the care process, and a list of medications and prior treatments.This provides them a very clean summary and prevents any confusion about past hospitalizations, medication changes, growth changes etc. While electronic medical records have come a long way, We've found our quick cheat sheet about my daugther is the best!
6) Invest in a filing system and a great personal calendar! There will be a lot of paper in your future! Start early and create a file that enables you to keep track of everything from medical records to receipts, prescriptions to appointment reminders. This is important for keeping track of your child's medical condition and keeping track of your bills for tax purposes.
7) Take Videos! The expresion "a picture is worth a thousand words" has never been so true! We kept telling the doctors, nurses and anyone who would listen how uncomfortable our daughter was and how we couldn't console her despite our best efforts. We decided to show the doctors what we meant by "fussy", "uncomfy" etc. It made a HUGE difference! When they could see first-hand how distressed Cecily was it changed how they treated her condition. In addition, we have found the videos helpful in the Emergency Department (for quickly explaining odd movements) and for sharing with her other doctors that may only see her every six-months. If your child suffers from seizures, it can help doctors identify if it is something to worry about - or something to dismiss every easily.
8) Be Honest (ie. exaggeration of problem in hopes of more help - not a great idea!) You know what I'm talking about... I've discussed this with Moms of kids with medical challenges. You want to keep the focus on your child and you don't want your doctor or nurse to dimiss your concern as "nothing to worry about..." But at the end of the day, you need to trust your doctor. Be direct about the challenges your child is facing and document all symptoms (when it started, how long it lasted), behavior changes (weight gain/loss, mood, energy changes), vomiting (frequency amount), sleep patterns (# of times waking etc.) Try not to play doctor by guessing at what it can/may be. Let your data speak for itself. It will provide your doctor a complete picture and help to identify the root cause of the problem.
9) You can never say Thank You too many times! As a family, we were actually astounded at how rarely some of the nurses and doctors get thanked! We've found that a simple, from the heart message can really show the staff how much you appreciate the work they are doing for your child. I'm not one to say do something to get something! We just think it makes for a better relationship. (And if it helps your child get that extra special treatment... well that's just icing on the cake).
10) Know Your Legislature and Your Child's Rights! The Execeptional Family Resource Center is committed to making a difference in the lives of families and individuals with disabilities and or special needs. Check out their site and you'll find a complete list of links to advocacy and legislative websites. You can help your child by getting involved in the issues that impact your child and his or her future. Get active & advocate!
11) Understand Your Insurance Policy Take the time to review your insurance policy in detail. This will help you for a variety of reasons. First, you'll know what, if any, authorizations are necessary before you can 1) see a specialist, 2) schedule a procedure, 3) what labs you can use and more! If you understand your benefits you can make sure your insurance policy is working for you - and not against you! ALWAYS call and dispute denied claims. We have found several mistakes and charges for items that should have been covered under our policy. It may take a few phone calls to resolve, but this is much better than paying for something that you didn't have too. Rady's Financial Services has been very helpful in helping us resolve issues with our insurance company. If you are confused about charges or have questions about why something may have been denied, don't be afraid to ask someone from Rady's Financial Services to get on the phone with you to speak to your insurance company. We have done this and it saved us many, many hours! If we have an issue with another provider in the future, we're going to follow this same approach. They understand the lingo and they can help you advocate for yourself. There is enough stress invovled in raising a child with special needs. Don't let insurance add to your burden!
