I came across this article today by Rachel Carpenter http://www.associatedcontent.com/article/1645757/what_not_to_say_to_a_mom_with_a_seriously_pg3.html?cat=25 and it is so true. These are things you should not say to a mom of a seriously ill child.
#1 "No matters what happens. it's God's will. [sic]"
#2 "I just know he/she will get better."
#3 "Are you needing help?"
#4 "I know exactly how you feel. My baby was in the hospital with RSV last year."
#5 "I had a friend go through this too. It was really tough for them, and now the child has lifelong disabilities."
#6 "I just don't know how you do it."
#7 "You need to relax. You need to be strong for your other children."
I definately get #6 a lot. I don't know how I do it either. Many days I want to stay in bed and pull the covers over my head, but I can't. There are feedings to do, appointments to make and go to, and kids to feed. If I looked pulled together it is because I rely on Diet Dr. Pepper and try really hard not to cry in front of my kids.
Occasionally, I get #3, and as the article points out, it is difficult to say 'yes' to the phrasing of that particular question. YES! YES! I always need help. It is horrible dragging 3 kids to an appointment, especially to offices that aren't kid friendly (most), have small rooms (many), it is an appointment where I actually need to hear what the doctor is saying (typically), or they run a couple of hours behind schedule (much more than one). I could definately use someone to cook us a meal that is low lactose (O), kiwi-free (M), peanut, egg, nut-free, etc. (Talli), low protein & low fat (Talli), and high protein & low carb (me). Meal planning is enough to want to crawl under the covers as mentioned above. ;).
Showing posts with label doctors. Show all posts
Showing posts with label doctors. Show all posts
Tuesday, February 15, 2011
Thursday, January 27, 2011
PA Consensus Conference
Tomorrow, I fly out to Washington, DC for a PA Concensus Conference sponsored by Children's National Medical Center. There will be a small group of metabolic doctors attending, as well as liver transplant experts, a neurologist, and representatives of parent groups. I will be representing the Propionic Acidemia Foundation, along with my dear friend, Jill Chertow Franks.
We hope to make great progress in creating documents with recommendations on screenings and monitoring. It is expected that the information gathered and discussed will be published.
We hope to make great progress in creating documents with recommendations on screenings and monitoring. It is expected that the information gathered and discussed will be published.
Saturday, March 27, 2010
What my other child needs to see a specialist?!
Baby O had his 12 month check-up this past week. It was a bit delayed because M had an appointment the day we were suppose to go. He has always been on the smaller side, but he has fallen off the growth chart in length, weight, and the very critical head size. His pediatrician wanted him to see an endocrinologist. Since Talli sees one, I scheduled an appointment with him.
The endocrinologist has already told me that work is his life-- he has office hours 6 days a week at various Chicagoland locations. We started seeing him when he was on staff at Loyola University. We were able to get in this morning.
We are changing up his diet a bit-- more fat and we will be adding extra calories to his bottle. He suggested 22 calories/oz and after discussion he said to go up to 30cals/oz if he tolerates it. Since we have polycose & prophree around and we can do the math in our heads, we will add that in to the formula. Since his growth was poor, the pediatrician said to not take him off formula. He had a bunch of labs drawn and we will see what comes up.
I think after Talli something like this comes up and we just shrug our shoulders and go on. Food is always an issue in the house, so my big hope is that celiac disease is not the problem, but that is so easily managed. If he needs ongoing follow-up, we can easily schedule Talli's & O's appointments for the same time. The doctor brought up finances at the appointment and I told him if it was a problem I would let him know, $50 co-pays stink, but we do plan for them.
The endocrinologist has already told me that work is his life-- he has office hours 6 days a week at various Chicagoland locations. We started seeing him when he was on staff at Loyola University. We were able to get in this morning.
We are changing up his diet a bit-- more fat and we will be adding extra calories to his bottle. He suggested 22 calories/oz and after discussion he said to go up to 30cals/oz if he tolerates it. Since we have polycose & prophree around and we can do the math in our heads, we will add that in to the formula. Since his growth was poor, the pediatrician said to not take him off formula. He had a bunch of labs drawn and we will see what comes up.
I think after Talli something like this comes up and we just shrug our shoulders and go on. Food is always an issue in the house, so my big hope is that celiac disease is not the problem, but that is so easily managed. If he needs ongoing follow-up, we can easily schedule Talli's & O's appointments for the same time. The doctor brought up finances at the appointment and I told him if it was a problem I would let him know, $50 co-pays stink, but we do plan for them.
Sunday, January 24, 2010
Child Life Specialists & IVs
On Friday, Talli was scheduled for her regular visit to our local hospital for IVIG. However, just a few minutes before we headed over, we got a call from one of the nurses that they were "bursting at the seems with cases of RSV". She asked if we wanted to come in on Saturday morning when the nursing staff would hopefully be able to see her right away. She thought if we came in as scheduled it would take a while to get a room on the floor, as they were into two over flow units, and probably 6-7 hours before her IV would get running.
When we scheduled it we had asked the unit's clinical leader if their new Child Life Specialist would be able to be with us while Talli got her IV. We had met her in December shortly before Talli was discharged. She had some ideas on how to make things go smoother in getting the IV established and some techniques to get Talli to relax. After the staff called me, they quickly called the Child Life Specialist and called me back to say that she would come in on Saturday to help with Talli.
IVs are a particular difficultly with Talli, which is putting it very lightly. With Propionic Acidemia the veins become very fragile and can break or "blow", an added problem is that when sick or fasting the fluids that are needed to put through the IV and the rate at which they need to run to be effective can irritate and damage the vessels such that they "blow" and a new one needs to be put in. Then there is the frequency problem- There are just a lot of IVs and blood draws needed. When she was an infant/toddler she was hospitalized every 4-6 weeks for 3-14 days. Occassionally, we would stay in the ER for 12 hours, but typically we would have to return again within the next 24 hours because it was not enough. For blood draws, they were daily, even several times a day, in her first month of life, over time it has tapered down to about once a month, unless there is some wrong. Then there is the problem that she just has shotty veins, they are tiny, they hide, and they are just scarred from getting poked a lot.
Because of these difficulties it takes on average 3 attempts to get an IV line in. On rare occasions, it is just one attemple, on others it is more than the number of fingers on one hand. So it is understandable why a small child would be upset by getting an IV. Once the nurses or doctor tries for an IV, she starts wiggling, screaming, spilling, and kicking. However, after the nurse counts "1 2 3" and pricks her skin she holds still. She will then give instructions to the nurses regarding how they should tape and put a house and board on her. Then comes the flush, the final test to make sure that IV is actually good. A flush is usually a small amount of saline (salt water), so they can see that fluid is going into the vein like it should, if the IV is not in the right place or the vein has "blown" they will either get resistance or a lump or bruise will show up under the skin. Often times, the nurses put self imposed limits on the number of attempts they will try for an IV. If they can not get it in those attempts, they call for someone else, which could be a 15min to 2 hour wait. So the process and trauma could get repeated and repeated. Again, she has gone through this enough to know that if it is not good, which chances are that it is not, she will get a nice bruise which does hurt.
So back to Child Life Specialists (CLS), they usually have a Bacheler's or Master's degree in Child Life. There are multiple programs throughout the country for training. They do play therapy with children on getting procedures, distract them while a procedure is occurring, train staff on ways to minimize trauma and anxiety in the child, they often coordinate and train volunteers, and organize and purchase supplies for the play room. Our local hospital had just hired a new CLS a few months ago to work part-time. She met with us in December when it was close to discharge time, but did get to observe Talli getting 1 dose of the H1N1 vaccination. Earlier in January, she spoke with the Art Therapist that has been coming to the house through Pallative Care to come up with some more ideas.
So Saturday morning, she came in and sat with us for a couple of hours. She talked with Talli about what would happen with the IV and blood draw (she needed 6 tubes of blood tested) and what Talli's role was- Hold still and not spit. We were incredibly blessed that it only took 1 attempt to get the IV in and they were able to get all of the blood that was needed.
Here are some things that were done to help minimize Talli's anxiety and keep her still voluntarily:
-CLS met with us previously (in December) and came with cool toys and a terrific stuff whale.
-CLS talked to Talli prior to the IV about what was going to happen and reminded her about her two responsibilities- holding still and not spitting.
-CLS brought new toys to distract Talli during the IV.
-Nurse counted "1 2 3" then stuck her with the needle, so she knew what was coming.
-Talli held onto some soft playing dough (NOT playdough brand as is has LATEX in it) with the hand not getting the IV.
-I sat in the bed with Talli on my lap.
-The arm getting the IV was propped on two pillows at her side.
-We muted the TV, so she could focus on me or the CLS talking to her.
-Continuous encouragement from tech, CLS, and me about sitting so well.
-Wrapped "prize" was given to Talli once the IV was all taped up.
-Arranged with the nurse prior to the IV placement to have fluids running after the IV was in to minimize flushes.
-Brought from home a bag of toys (plastic slinky, mini pinwheel, grow capsules, playing dough) that is only for use in the hospital and she doesn't have to share with her brothers.
One of the problems in general is that CLS time and services can not be billed to insurance companies, so their pay and their resources have to come out of a hospital or clinic's bottom line. Talli have been in numerous hospitals throughout the country in our travels and moves and we have found these facilities to have good Child Life Programs (CLP), things may have changed since we have been there last-
-Primary Children's Hospital in Salt Lake City, UT- the best CLP we have experienced
-Lutheran General Hosptital in Park Ridge, IL- they seem a bit stretched with the new pediatric unit that opened in 2009, but are also good
-Edward Hospital in Naperville, IL- this is our local hospital and the CLS seems to be doing good work thus far
-Oncology/Hematology clinics at Hope Children's Hospital and Central Dupage Hospital-we didn't see a CLS there, however, you can see their hand in how the clinic runs with volunteers in the lobby, snacks in the lobby, video game consoles in the lobby, a treasure box, staff walking patients to the blood lab and putting them in the front of the line for a draw.
When we scheduled it we had asked the unit's clinical leader if their new Child Life Specialist would be able to be with us while Talli got her IV. We had met her in December shortly before Talli was discharged. She had some ideas on how to make things go smoother in getting the IV established and some techniques to get Talli to relax. After the staff called me, they quickly called the Child Life Specialist and called me back to say that she would come in on Saturday to help with Talli.
IVs are a particular difficultly with Talli, which is putting it very lightly. With Propionic Acidemia the veins become very fragile and can break or "blow", an added problem is that when sick or fasting the fluids that are needed to put through the IV and the rate at which they need to run to be effective can irritate and damage the vessels such that they "blow" and a new one needs to be put in. Then there is the frequency problem- There are just a lot of IVs and blood draws needed. When she was an infant/toddler she was hospitalized every 4-6 weeks for 3-14 days. Occassionally, we would stay in the ER for 12 hours, but typically we would have to return again within the next 24 hours because it was not enough. For blood draws, they were daily, even several times a day, in her first month of life, over time it has tapered down to about once a month, unless there is some wrong. Then there is the problem that she just has shotty veins, they are tiny, they hide, and they are just scarred from getting poked a lot.
Because of these difficulties it takes on average 3 attempts to get an IV line in. On rare occasions, it is just one attemple, on others it is more than the number of fingers on one hand. So it is understandable why a small child would be upset by getting an IV. Once the nurses or doctor tries for an IV, she starts wiggling, screaming, spilling, and kicking. However, after the nurse counts "1 2 3" and pricks her skin she holds still. She will then give instructions to the nurses regarding how they should tape and put a house and board on her. Then comes the flush, the final test to make sure that IV is actually good. A flush is usually a small amount of saline (salt water), so they can see that fluid is going into the vein like it should, if the IV is not in the right place or the vein has "blown" they will either get resistance or a lump or bruise will show up under the skin. Often times, the nurses put self imposed limits on the number of attempts they will try for an IV. If they can not get it in those attempts, they call for someone else, which could be a 15min to 2 hour wait. So the process and trauma could get repeated and repeated. Again, she has gone through this enough to know that if it is not good, which chances are that it is not, she will get a nice bruise which does hurt.
So back to Child Life Specialists (CLS), they usually have a Bacheler's or Master's degree in Child Life. There are multiple programs throughout the country for training. They do play therapy with children on getting procedures, distract them while a procedure is occurring, train staff on ways to minimize trauma and anxiety in the child, they often coordinate and train volunteers, and organize and purchase supplies for the play room. Our local hospital had just hired a new CLS a few months ago to work part-time. She met with us in December when it was close to discharge time, but did get to observe Talli getting 1 dose of the H1N1 vaccination. Earlier in January, she spoke with the Art Therapist that has been coming to the house through Pallative Care to come up with some more ideas.
So Saturday morning, she came in and sat with us for a couple of hours. She talked with Talli about what would happen with the IV and blood draw (she needed 6 tubes of blood tested) and what Talli's role was- Hold still and not spit. We were incredibly blessed that it only took 1 attempt to get the IV in and they were able to get all of the blood that was needed.
Here are some things that were done to help minimize Talli's anxiety and keep her still voluntarily:
-CLS met with us previously (in December) and came with cool toys and a terrific stuff whale.
-CLS talked to Talli prior to the IV about what was going to happen and reminded her about her two responsibilities- holding still and not spitting.
-CLS brought new toys to distract Talli during the IV.
-Nurse counted "1 2 3" then stuck her with the needle, so she knew what was coming.
-Talli held onto some soft playing dough (NOT playdough brand as is has LATEX in it) with the hand not getting the IV.
-I sat in the bed with Talli on my lap.
-The arm getting the IV was propped on two pillows at her side.
-We muted the TV, so she could focus on me or the CLS talking to her.
-Continuous encouragement from tech, CLS, and me about sitting so well.
-Wrapped "prize" was given to Talli once the IV was all taped up.
-Arranged with the nurse prior to the IV placement to have fluids running after the IV was in to minimize flushes.
-Brought from home a bag of toys (plastic slinky, mini pinwheel, grow capsules, playing dough) that is only for use in the hospital and she doesn't have to share with her brothers.
One of the problems in general is that CLS time and services can not be billed to insurance companies, so their pay and their resources have to come out of a hospital or clinic's bottom line. Talli have been in numerous hospitals throughout the country in our travels and moves and we have found these facilities to have good Child Life Programs (CLP), things may have changed since we have been there last-
-Primary Children's Hospital in Salt Lake City, UT- the best CLP we have experienced
-Lutheran General Hosptital in Park Ridge, IL- they seem a bit stretched with the new pediatric unit that opened in 2009, but are also good
-Edward Hospital in Naperville, IL- this is our local hospital and the CLS seems to be doing good work thus far
-Oncology/Hematology clinics at Hope Children's Hospital and Central Dupage Hospital-we didn't see a CLS there, however, you can see their hand in how the clinic runs with volunteers in the lobby, snacks in the lobby, video game consoles in the lobby, a treasure box, staff walking patients to the blood lab and putting them in the front of the line for a draw.
Friday, January 15, 2010
Being part of a community
I wanted to start this post about the earthquake in Haiti. It is a terrible tragedy. I think it hits home for special needs families like ours. We already see how fragile life is and if our family was in this situation it would be even more dire.
Moneysavingmom on her blog is listing some groups helping out in Haiti. She is also making personal contributions to relief efforts. Our family has donated to Doctors without Borders and will be finishing up Newborn Humanitarian Kits to be donated through our Church's Humaniarian arm. I have posted links to the blog, Doctor's Without Borders, and information on the Newborn Kits. The Newborn Kits are always needed as blankets, diapers, and soap are constantly in need through out the world.
Prior to the earthquake, I had been thinking a lot about communities and how we work together. We have been hit lately with some pretty nasty winter weather- ice storms, sleet, and lots of snow. When it is like that you see our community coming out. I particularly notice it about 2PM, the stay at home mom's are out shoveling and deicing before the Junior High down the block lets out. We have single women living on either side of our house. One with a young son frequently has her walk and drive blown by another family. This has been done for us as well; I remember one particular storm when Talli was very ill and I needed to get her to the hospital. I had my drive quickly blown, so we could leave.
Moneysavingmom on her blog is listing some groups helping out in Haiti. She is also making personal contributions to relief efforts. Our family has donated to Doctors without Borders and will be finishing up Newborn Humanitarian Kits to be donated through our Church's Humaniarian arm. I have posted links to the blog, Doctor's Without Borders, and information on the Newborn Kits. The Newborn Kits are always needed as blankets, diapers, and soap are constantly in need through out the world.
Prior to the earthquake, I had been thinking a lot about communities and how we work together. We have been hit lately with some pretty nasty winter weather- ice storms, sleet, and lots of snow. When it is like that you see our community coming out. I particularly notice it about 2PM, the stay at home mom's are out shoveling and deicing before the Junior High down the block lets out. We have single women living on either side of our house. One with a young son frequently has her walk and drive blown by another family. This has been done for us as well; I remember one particular storm when Talli was very ill and I needed to get her to the hospital. I had my drive quickly blown, so we could leave.
Wednesday, October 21, 2009
Getting things paid for....
I am by no means an expert, however, I have learned a few things over the last 8 years.
1. Read your insurance policy or at very least your insurance certificate to see what is covered.
2. Ask for itemized bills, especially for hospitalizations.
3. Read through the bills that come. I was just sent a bill for a $30 for an appointment with a specialist. I had paid the co-pay when we were in the office. With this office, if I had paid it again I would never see the money again.
4. Know your state laws regarding coverage.
IL recently passed a bill requiring amino acid based formulas to be covered by insurance. Our insurance was denying Talli's formula. I sent in an appeal with a copy of the law and Press Release by a sponsoring organization. Usually, once a year I have to send in the same information, but it is now covered.
5. Find out why something is not being covered.
I went round and round about getting some medication covered right after Talli turned 2 years old. I was told that since she is 2 she no longer could take the name brand liquid form of the medication, she had to take a pill. This was after hours of being on the phone with various people. I informed them that she had a feeding tube and they were paying for those supplies every month. I got a big, "Ohhhhh" and "we are a different department, so don't know about tubes". Every once in a while I get a denial and then make sure the pharmacists puts in the notes that she has a tube.
6. DON'T pay that bill if you have Medicaid.
In most locals it is not legal for a medical provider to collect from a Medicaid recipient.
7. Talk to your provider if you are having trouble paying
We have negociated not paying co-pays and several thousand off a surgeon's bill by asking. Many hospitals and medical providers will work with you if you are having trouble paying. Not all doctors are like Dr. Pedro Jose Greer or Dr. Holmes Morton, but there are some out there.
8. Talk to the provider if they are having trouble getting paid
Keep the communication open with the provider, so they are getting paid in a timely manner. Bring your insurance card with you, call the insurance company to get denied claims paid. Your provider will be happy to get paid and in a timely manner.
I noted to our pediatrician when we changed insurance companies that his negociated in-network rate was a lot higher. He commented on how much he liked the plan that we had, that it paid the second highest amount, but the company paid him 30-45 days sooner than the other plan that paid him more.
Did he open up on New Year's Eve or stay open later a different day to see my sick child because he loves us oh so much or because he knows we respect him and his time? I don't know, but I like to make sure he is well paid and in a timely manner.
9. Talk to other parents
Yes, most of us meet with other special needs families and complain and compare notes. But do you ask: "How much was that x?" "What insurance do you have?" "How do you pay for all of the copays on meds and visits?"
Ask, talk, and help one another.
My husband was moved over to a contractor at his job 3 years ago and we went on COBRA. It was over 16% of his gross monthly income. I asked my good friend whose husband was unemployed. "Well, didn't you know there is this program that will pay for your family's premium if your costs are so high for a family member on Medicaid?" Ah, well no!! Our 2 case managers for other programs who had the application never told us about it. We applied and.... they paid our premiums back to the application date. I send in proof of payment and EOBs and we get reimbursed with a check sent via certified mail.
10. Search out organization there to help
Does your disease organization help with bills?
Ask your disease organization if they know of local or national resources specific to your disorder.
Is there a local support group meeting?
Find out if your child qualifies for mandated programs like Early Intervention.
Support and utilize groups like http://www.themorganproject.org/
Take advantage of conferences supported by disease organizations, EI and other groups. Here in IL, StarNet and the ARC will help to pay for travel expenses for conferences and often hold free meetings as well.
11. Contact the manufacturer
Whether it is a DME manufacturer or a drug company, many have programs to help those in need. For those with Propionic Acidemia, most are on specialized formula for life. Most of the manufacturers have programs to help those who can not afford treatment. The same goes for drug companies, whether it is an orphan drug like Carnitor, or a major drug company processing IVIG, they will help those needing treatment. When our feeding pump breaks (I have 9 pumps in Talli's room, one of which is working), I contact the DME provider, but also my local sales rep. Oh, Patrick, such a wonderful man, who will overnight me a pump that works; he sends a nice Christmas card as well.
12. Talk to the discharge planner & social worker at the hospital
Everytime you are at the hospital talk to them. Let them know your needs. Unfortunately, once you are discharged you are often forgotten, but they may have resources that you do not know of.
13. Just shop around
Yes, I have gotten supplies on both ebay & amazon. My first feeding pump purchase on ebay was fully reimbursed by our health insurance company. $161 vs $2500, someone actually did the math and realized the deal. This insurer highly suggested people shop around and negociate. Dh also happened to work for the company and I was on the phone with the claims rep almost daily, but I don't think that swayed the decision as they also denied plenty of claims. Even if they didn't reimburse me, 20% coinsurance on $2500 = $500, so super good deal for me either way. My last pump purchase was $37.50, including shipping.
Don't do things that are illegal. I have paid for compounded Rxs that would have been a lot cheaper if I got them from Canada.
14. Use the supplies at the hospital
Don't use your own stock, use what the hospital has. If they do not have a needed supply talk with them about getting it. I have had charge nurses send people out to get Pampers because Talli couldn't use Huggies.
15. Know your costs
Know what your co-pays are, your co-insurance, Max out-of-pocket, etc.
My insurer has a nice tool regarding Rxs on their website. I can find out the drug costs on all of our family's medications if I pick them up at Pharmacy X or get them mail order. It also states the limit on the number of doses for the Rx. So, I learned that it is cheaper for us to get 3+ medications a month from Dominicks' ($4/month) or Target's ($4/month or $10/3 months)discount drug programs than have them billed through my insurance.
16. Know your pharmacist
I love our pharmacy! I can bike to it when the weather is good. The pharmacy tech knows who I am and gathers all of the family's medications when he sees me coming. A few weeks ago he didn't grab one for one the boys, but he rarely gets an Rx. If insurance is denying something, they will usually give me the Rx or at least a week's worth to hold us over until things are straightened out. If something is not in stock they will ask me if 1. I can wait a day or two to get it in 2. if I want it transfered to a different pharmacy AND they will call to see if it is stock there 3. they will call the pharmacy down the street and if it is in, the pharmacy tech will go get a supply to then fill my Rx.
Really, I just love them!
This saves us how?? If we are not skipping meds because they are being denied for some reason or they are not in stock won't our overall health costs go down.
A friend's pharmacist calls her every month to come pick up her supply. I haven't been able to get it so that all of the medications are refillable on the same day.
1. Read your insurance policy or at very least your insurance certificate to see what is covered.
2. Ask for itemized bills, especially for hospitalizations.
3. Read through the bills that come. I was just sent a bill for a $30 for an appointment with a specialist. I had paid the co-pay when we were in the office. With this office, if I had paid it again I would never see the money again.
4. Know your state laws regarding coverage.
IL recently passed a bill requiring amino acid based formulas to be covered by insurance. Our insurance was denying Talli's formula. I sent in an appeal with a copy of the law and Press Release by a sponsoring organization. Usually, once a year I have to send in the same information, but it is now covered.
5. Find out why something is not being covered.
I went round and round about getting some medication covered right after Talli turned 2 years old. I was told that since she is 2 she no longer could take the name brand liquid form of the medication, she had to take a pill. This was after hours of being on the phone with various people. I informed them that she had a feeding tube and they were paying for those supplies every month. I got a big, "Ohhhhh" and "we are a different department, so don't know about tubes". Every once in a while I get a denial and then make sure the pharmacists puts in the notes that she has a tube.
6. DON'T pay that bill if you have Medicaid.
In most locals it is not legal for a medical provider to collect from a Medicaid recipient.
7. Talk to your provider if you are having trouble paying
We have negociated not paying co-pays and several thousand off a surgeon's bill by asking. Many hospitals and medical providers will work with you if you are having trouble paying. Not all doctors are like Dr. Pedro Jose Greer or Dr. Holmes Morton, but there are some out there.
8. Talk to the provider if they are having trouble getting paid
Keep the communication open with the provider, so they are getting paid in a timely manner. Bring your insurance card with you, call the insurance company to get denied claims paid. Your provider will be happy to get paid and in a timely manner.
I noted to our pediatrician when we changed insurance companies that his negociated in-network rate was a lot higher. He commented on how much he liked the plan that we had, that it paid the second highest amount, but the company paid him 30-45 days sooner than the other plan that paid him more.
Did he open up on New Year's Eve or stay open later a different day to see my sick child because he loves us oh so much or because he knows we respect him and his time? I don't know, but I like to make sure he is well paid and in a timely manner.
9. Talk to other parents
Yes, most of us meet with other special needs families and complain and compare notes. But do you ask: "How much was that x?" "What insurance do you have?" "How do you pay for all of the copays on meds and visits?"
Ask, talk, and help one another.
My husband was moved over to a contractor at his job 3 years ago and we went on COBRA. It was over 16% of his gross monthly income. I asked my good friend whose husband was unemployed. "Well, didn't you know there is this program that will pay for your family's premium if your costs are so high for a family member on Medicaid?" Ah, well no!! Our 2 case managers for other programs who had the application never told us about it. We applied and.... they paid our premiums back to the application date. I send in proof of payment and EOBs and we get reimbursed with a check sent via certified mail.
10. Search out organization there to help
Does your disease organization help with bills?
Ask your disease organization if they know of local or national resources specific to your disorder.
Is there a local support group meeting?
Find out if your child qualifies for mandated programs like Early Intervention.
Support and utilize groups like http://www.themorganproject.org/
Take advantage of conferences supported by disease organizations, EI and other groups. Here in IL, StarNet and the ARC will help to pay for travel expenses for conferences and often hold free meetings as well.
11. Contact the manufacturer
Whether it is a DME manufacturer or a drug company, many have programs to help those in need. For those with Propionic Acidemia, most are on specialized formula for life. Most of the manufacturers have programs to help those who can not afford treatment. The same goes for drug companies, whether it is an orphan drug like Carnitor, or a major drug company processing IVIG, they will help those needing treatment. When our feeding pump breaks (I have 9 pumps in Talli's room, one of which is working), I contact the DME provider, but also my local sales rep. Oh, Patrick, such a wonderful man, who will overnight me a pump that works; he sends a nice Christmas card as well.
12. Talk to the discharge planner & social worker at the hospital
Everytime you are at the hospital talk to them. Let them know your needs. Unfortunately, once you are discharged you are often forgotten, but they may have resources that you do not know of.
13. Just shop around
Yes, I have gotten supplies on both ebay & amazon. My first feeding pump purchase on ebay was fully reimbursed by our health insurance company. $161 vs $2500, someone actually did the math and realized the deal. This insurer highly suggested people shop around and negociate. Dh also happened to work for the company and I was on the phone with the claims rep almost daily, but I don't think that swayed the decision as they also denied plenty of claims. Even if they didn't reimburse me, 20% coinsurance on $2500 = $500, so super good deal for me either way. My last pump purchase was $37.50, including shipping.
Don't do things that are illegal. I have paid for compounded Rxs that would have been a lot cheaper if I got them from Canada.
14. Use the supplies at the hospital
Don't use your own stock, use what the hospital has. If they do not have a needed supply talk with them about getting it. I have had charge nurses send people out to get Pampers because Talli couldn't use Huggies.
15. Know your costs
Know what your co-pays are, your co-insurance, Max out-of-pocket, etc.
My insurer has a nice tool regarding Rxs on their website. I can find out the drug costs on all of our family's medications if I pick them up at Pharmacy X or get them mail order. It also states the limit on the number of doses for the Rx. So, I learned that it is cheaper for us to get 3+ medications a month from Dominicks' ($4/month) or Target's ($4/month or $10/3 months)discount drug programs than have them billed through my insurance.
16. Know your pharmacist
I love our pharmacy! I can bike to it when the weather is good. The pharmacy tech knows who I am and gathers all of the family's medications when he sees me coming. A few weeks ago he didn't grab one for one the boys, but he rarely gets an Rx. If insurance is denying something, they will usually give me the Rx or at least a week's worth to hold us over until things are straightened out. If something is not in stock they will ask me if 1. I can wait a day or two to get it in 2. if I want it transfered to a different pharmacy AND they will call to see if it is stock there 3. they will call the pharmacy down the street and if it is in, the pharmacy tech will go get a supply to then fill my Rx.
Really, I just love them!
This saves us how?? If we are not skipping meds because they are being denied for some reason or they are not in stock won't our overall health costs go down.
A friend's pharmacist calls her every month to come pick up her supply. I haven't been able to get it so that all of the medications are refillable on the same day.
Subscribe to:
Posts (Atom)