everything is possible... the impossible just takes a little longer

slow and steady wins the race

Tuesday, January 26, 2010

there goes "THAT" family....

This past Sunday at church we became... "THAT" family.  As per usual we arrived a wee late... we didn't really miss anything, yet late enough that clearly we would not find room on the end of a pew where we would have room for Sam's wheelchair and the rest of us to fit without performing a complex circus act.  I believe the Catholic Church frowns upon families balancing one on top of another's shoulders during mass... not to mention what child protective services would think about us not having any trained spotters.

Needless to say, we opted to sit in the foyer or Gathering Space where although you can hear everything you are buffered from the rest of the congregation by large glass windows.  We were not alone in the Gathering Space, which is usually the place to be if you arrive late or have small children.

Yup... that's us.

So the boys are behaving and being quiet and just as I am feeling pretty good about our ability to make it through to the end of mass with no major melt downs.... it happens.  The unassuming toy car that we allowed Sean to bring into church starts making noses that I didn't know it was capable of.  I thought this was a harmless, soft, quiet toy that would keep him busy but quiet for the next 50 minutes.  Little did I realize (but Sean was fully aware) that the little car when pulled backwards, following a loud series of clicks, and released... would squeal and lurch and zip across the tile floor and echo the most distracting noises throughout the Gathering Space all to Sean's delight and everyone else's displeasure.

In that instant... we became "THAT" family.  You know the family that you continue to discuss over breakfast and either say a prayer for them or hangyour head and sigh... all the while thankful that it is not YOUR family.  Pat and I both exchanges loaded glances and although we didn't speak it was clear we were thinking the same thing... do you want to grab it or should I?  Is that sound really worse than the screaming that will surely follow?  Following our unsuccessful snatch-n-grab, screaming rang through the Gathering Space and brief conversation between Pat and Andrew as to the whereabouts of the baggy  of Apple Jacks (that was apparently left in the van somewhere).

We tried to hide the car and that made things even worse.  Sean found it every time and his wailing got increasing louder and more pathetic each time we took it away. He finally then threw himself onto the floor in a limp attempt to gain sympathy.  I think he was actually ready for a nap but had to put in a good show to save face.  We just let him lay there, face down, on the tile floor.

Andrew then starts giggling.

Then Sam wiggles his way out of his wheelchair harness and reaches down and grabs a handful of Sean's hair.

More screaming.

More giggles.

I now have the car stuffed into my coat and am attempting to keep it out of sight, Sean perfectly executed the "stop, drop and flop" maneuver. Sam, feeling a bit left out, is kicking the foot rest on his wheelchair and the sound is resonating loudly throughout the Gathering Space.  Andrew is still giggling. Pat has his head bowed in prayer and pretending that he is not related to us... either that or he is asleep on his feet and completely oblivious to the happenings going on around him.

Finally mass has ended.  Everyone who leaves after communion is now exiting the sanctuary and entering the Gathering Space.  Yet we remain.  Patrick, the good Catholic boy that he is, insists on staying until the priest and the gifts exit.  Me, the protestant girl, thinks that crisis management is futile at this point and we should just cut our losses get out now.  In the swirl of people and commotion I attempt to put the boys coats on.  Patrick is still praying.  Sean finds a water bottle underneath the wheelchair and is now watering a large potted plant...


We get the boys all loaded into the van and head out for breakfast.  Patrick is more alert now and we both know that very soon a large hot cup of coffee will be put in front of us.  Once again all is right in the world.

Thank goodness "THAT" family left the premisses.

Friday, January 22, 2010

Reading Corner

So I just started Sam and Sean on the Your Baby Can Read program (thank you grandma moore).  We will be using the program over the next several months and I am very curious to see if it works.  The concept is simple and I think there is some real potential here.  In the past we have tried Out Of The Box, that involves the parents hand writing a series of flash cards that are presented to the child on a regular rotating schedule focusing on the whole word concept, however it really didn't keep Sam's interest (please note that I know several children who use this program with great success and the kids love it).  The Your Baby Can Read program, for starters, revolves around watching the DVD(s) twice a day... bonus for Sam who loves videos... and also incorporates flashcards, interactive books, slide cards and music.

On first impression I am impressed with the quality of the flash cards, books and other materials.  The videos are simple but engaging and interactive.  Sean is 2 and I will admit that he has been getting a bit distracted near the end of the video but Sam seems to enjoy it... especially watching the kids.  Sam is 7, and although a few years older than the recommended target age of the Your Baby Can Read program, he is developmentally closer to 2 also.  So I am curious to see how well both boys respond. So far both boys interact with the video; clapping and waving appropriately and Sean is attempting to repeat the words.  

We have only been at this for a few days now but I will post their progress over the next few months.  

Tuesday, January 19, 2010

A bike for Sam: a happy insurance story

I am so completely thrilled to announce that Sam is now the proud new owner of a DISCOVERY BIKE by Freedom Concepts! And better yet.... wait for it... wait for it.... I was able to get it covered by our medical insurance.

For starters I should mention, for those of you who don't know, the Discovery Bike is an adaptive mobility device for persons with special needs.  This is not the kind of bike you would purchase for a typically developing child and once you see the price tag you will notice that it leaves your average $60 huffy in the dust.  As with all things created with persons with special needs in mind, the Discovery Bike is expensive... think used car, 1 year college room and board or new appliances for your kitchen.  Seriously, unless you have a child who clearly could not ride another bike due to medical issues or physical disabilities, you would not even consider entertaining the thought of purchasing a $4000.00 + bike for them.  As beneficial as this sort of adaptive equipment may be for your child with special needs, you would also know that your insurance company, most likely, will not even consider a bike as a coverable expense making an adaptive device of this sort unattainable for many.

However, it is possible.... and I will tell you how I did it.

Please note that our results are not typical and I offer these tips to you for no other reason that they worked for us, but that does not guarantee that it will work for you.  In the past we have been successful in acquiring a number of DME (durable medical equipment) items for Sam such as bath chairs, feeding pumps, suction machine, special needs car seat, feeder seats, therapy swing and most recently a Discovery Bike by Freedom Concepts.  The process is roughly the same no matter what you are trying to acquire and sometimes you will be successful and other times, even after several appeals, you will fail.  It is all part of being an advocate for your child with special needs.

The first thing that I will stress is to do your research!  Read product descriptions, google the item you are interested in to find what other parents have to say about it and when possible request to see the item in person.  Compare with other similar items and all accessories.  Find out what accessories need to be ordered with the item and which could be ordered later... (***for example my son had a tumble form feeder seat.  Due to the length of his g-tube feedings he would get sweaty and sometimes get a heat rash on his back.  I found that tumble forms made a cover for the seat that could reduce sweating and was machine washable.  Fabulous!  However, our insurance would not cover this item.  I found out at a later time that had the cover been purchased with the chair as an accessory it would have been covered.) Does the item have the potential to grow with your child (insurance companies like this one) or does it have a warranty?  And most importantly make sure that you can justify the item itself as well as any accessories as medically necessary items.  If the item you are looking for can only be found in specialty catalogs or websites gear specifically for persons with special needs that can work in your favor... and you can use the wording used to describe the item to help support your case.  You must be able to prove that your child cannot use a standard made, off the rack, found at Toys R Us version of the item and you need to be able to support your claims.

Once you reach the point were you feel you could sell this product to just about anyone, you are ready to start collecting your letters of medical necessity.  ***a tip.... if you have a nurse case manager... use them.  Our nurse case manager was able to talk to insurance supervisors on our behalf and not only found out exactly what was required but she was able to keep me up to speed on the progress of our claim.  She was able to direct me to a contact person at the insurance company to whom I had all the  documentation sent to.... and they were expecting it and were already aware of what we were asking them to consider.  This not only helps to speed up the process but it put our claim directly into the hands of someone who could make things happen.  On one occasion I was told by a representative from my insurance company that "oh... we do have on record that we received something from you but it looked like a letter of medical necessity... we don't read those and it was just put into your file...".  Now I am sure that was information that should have not been shared with me however, that clearly told me what I was up against.  In actuality, it was a request for reimbursement but that clearly told me what I was up against.  From then on I made sure that the nurse case manager was involved with all my claims because I could just call her to check on the status... if she had not heard anything she would go to bat for me and request further information... ultimately forcing someone to read the documentation that I sent them.  ***another tip... Don't accept a NO from someone who doesn't have the power to give you a YES to begin with.  Also as you speak with your nurse case manager and pled your case, they will make notes of your conversation and be able to provide even more info than what you state in your letter.  This will allow you to keep your letter short and sweet but still make sure your voice is heard.

In writing your letter of medical necessity, concise wording is important.  Yes, you should write one as your child's Advocate and think of it as a cover letter so to speak to tie all the other letters together.  Your letter can be a bit less formal but should still clearly and unbiasedly state the facts.  You  should make a conscious effort to avoid using words that could sabotage your efforts.  *** for example... Don't use Stroller (insurance companies don't like to cover strollers), DO USE Pediatric Wheelchair or Mobility/Transportation Device.  Don't use Bike (unless in the name as in Discovery Bike), DO USE Adaptive Mobility Device or Therapy Aid.  Also remember when requesting letters of medical necessity from Doctors, therapist, specialist etc to make sure that they avoid using any sabotage words in their letters also and request that they mention the same highlights that you mention in your letter.  When gathering letters, I usually ask to speak to the nurse of the specialist or pediatrician that I am requesting a letter from.  I find that they usually have more time to spend with me on the phone, they will email me a rough draft, make any corrections and then take the final letter to the doctor for their signature and final approval.  I have found that by doing it this way I can get a much more detailed letter and I can help script it so that there is a nice cohesion between all the letters (I submitted 5 to get Sam's bike).  And I try to get letters from everyone.  For example, if I am mentioning how a particular item would provide benefits that could improve my child's respiratory health (as in a flexible neoprine harness to allow for full chest expansion when breathing), or improve GI function and provide neurological benefits (as in the reciprocal motion of a pedaling), or could offer my child a lifetime of weight management tools and other fitness benefits (physical activity is essential for persons with Down syndrome as it is well documented that they have issues with weight management and low tone... an exercise plan early on provides a lifetime of benefits) I make sure to get letters of medical necessity from each specialist that could support all my claims. (GI, neurologist, cardiologist, pulmonologist, pediatrician, therapists etc). You may also want to mention how an item would be beneficial to a caregiver helping them to reduce the risk of injury to themselves or the child (as when requesting bath chairs, lifting devices, hospital beds for the home etc).

You should document and be able to support everything you are asking for from a medical stand point.  ***For example... if you are requesting a specific harness or accessory make sure to mention why that is important. Mention if this item is needed to keep your child safe, help to manage his reflux by keeping him upright or essential for proper positioning to keep their airway open and so on.  Also note that initially, it will not always be someone with a medical degree who will be reading your letters of medical necessity.  So especially if you are going to mention a rare or a somewhat little-known condition, or use a big medical term you might want to add a brief laymen's description.  ***For example if you are going to list "Severe Oral Dysphagia" as a reason for medical necessity, the person reviewing your claim might not know that it is another name for "difficulty swallowing" so upon reviewing your plan they may not find "Dysphagia" as a condition that meets their criteria when in actuality "feeding issues, difficulty swallowing as a result of a defect or injury and oral motor difficulties" for example, are covered expenses. It is all in how it is worded and coded.  However if the person doing the review does not know that these terms can sometimes be interchanged and could mean the same thing, your claim can be denied.  So sometimes it is in your best interest to provide a little extra explanation for some diagnosis.  In the same breath... short and sweet is your best option.  Your letter will most likely be skimmed at best so lay your points out clearly and do it all in one page.  This is another instance when a nurse case manager could help intervene and request that your claim be put in the hands of physician reviewer or other person who is knowledgeable of your child's condition or medical history.

I usually request that all the letters of medical necessity are sent to me and then  I give them (along with the scripts) to our DME (Durable Medical Equipment) provider who submits them to the insurance company with all the proper codes.  If you don't already have a DME provider, you can get a list of providers through your insurance company... make sure they are In Network. Depending on the item, you may even be able to have your child's therapist, or doctor submit the claim for you... sometimes you can even work with their school for some items.

Often times there is a waiting period to determine if a certain item is medically necessary or is a luxury item.  This pre-determination period or pre-authorization period may vary and does not guarantee coverage... only whether or not an item meets the criteria of medical necessity.  And remember that you can ALWAYS appeal.  It is also acceptable to ask why your claim was denied and resubmit new info.  Sometimes you will find that some items are just not covered by your insurance and no amount of appealing will get you what you want.  But you can also request for them to provide you with the criteria used to determine coverage.  **** for example Sam has Hirschsprung's disease and as a result had nearly his entire large intestine removed... leaving him with loose and frequent stools requiring him to wear diapers.  I have tried my hardest to get our insurance company to cover his diapers, which are special order from a medical supply company, to no avail.  When I requested my insurance company to provide me the reason they were not covered, I was given the response that "his condition was not the result of an illness or injury".  After several phone calls I realized that they had no idea what Hirschsprung's disease was... so I submitted several more letters of medical necessity and described in detail what HD was and how it effected Sam.  The letter I received after that is "Diapers are not a coverable expense" and because Sam is only 7, diapers are considered a luxury item and no amount of persuading was going to convince them otherwise.  So although we are still paying out the nose for diapers... every year I submit another claim to see if his diapers will be covered.  You never know exactly who is going to review your claims and sometimes there are instances when certain items fall in to "gray areas" where determination is left to a insurance representative's interpretation of your plan coverage.  This is when a nurse case manager could also help you pled your case.  So in the end you can't win all the time but you can win some of the time.

Mommyologists and child advocates everywhere know that dealing with your insurance company is not about winning the war but rather winning small battles.

Below is a copy of the actual letter that I sent to our insurance company requesting a Discovery Bike for Sam (personal info removed).  This letter is no literary masterpiece but it got the job done... along with the several other letters of medical necessity from other medical professionals and therapists and documentation about the product itself.

Also know that there are several organizations out there that assist with funding for special needs equipment.  If you are looking at getting a Discovery Bike please check out Project Mobility because they are doing amazing things at the Bike Rack... you will be inspired!

Attention Pre-Authorization Department

To Whom It May Concern:

 I am requesting the Pre-Authorization for a Discovery Bike for my son Samuel Collins.  Sam was born at 27 weeks and has Down syndrome.  Sam has required several major surgeries and long hospital stays due to a variety of medical conditions.  Currently Sam is in good health and will turn 7 in December.  About a year ago he learned how to walk independently and is gradually becoming more sure on his feet over a variety of terrains, however Sam still requires a wheelchair as he is unable to stand in one place for more than a few minutes at a time and due to stamina, balance, self-control and safety.  Sam is currently 100% g-tube fed and has asthma. 

Sam receives Physical therapy and speech therapies both in the school setting and privately.  Sam has very low tone and physical therapy, both on land and in the pool has greatly improved his balance, coordination, stamina, spacial awareness, motor planning, respiratory health, over all strength, independence and ability to interact with peers.  Reciprocal motion, as with walking and bike riding is not only beneficial to Sam physically but also neurologically as he has a history of Infantile Spasms (rare and severe form of epilepsy). 

It is important for Sam to get exercise and to maintain an exercise routine throughout his lifetime (as low tone and weight management are often issues for persons with Down syndrome).  Physical fitness will improve his quality of life, increase his strength and stamina, allow him to become more independent and help him to maintain good heart and respiratory health.  Recently Sam has expressed a lot of interest in bicycles.  As you can imagine he has to work harder than most to accomplish simple tasks that most children his age take for granted and do without much thought.  Therapy is hard work and often times it is no fun at all and difficult to motivate a child.  With Sam’s health, well-being, medical benefits and motivation at heart I feel that a special needs bike would motivate him and the long term health benefits are numerous.   After much research I feel that the Discovery Bike is the best fit for him.  For his own safety, low tone issues, balance, coordination, and cognitive delays, Sam requires a bike with restraints to keep him upright and to keep him from falling off.  The Discovery Bike offers an appropriate 4 point butterfly harness that would allow Sam to maintain an upright position and also allow him to focus on other actions.  Adjustable foot straps and many other adjustable features would allow this bike to grow with Sam.  The Discovery Bike also comes complete with a rear steering and breaking system to allow a caregiver to steer and break from the rear of this mobility device as well as allow the rider, Sam, to navigate as well.  Sam does not have the cognitive ability, the motor planning or the physical strength required to pedal, steer and balance on a bike all at the same time.  However, I believe he will be capable of this in time.  The Discover Bike allows us to provide Sam with the much needed assistance that he requires now and would also allow us to “give him wings” as he becomes more comfortable and is able to control the bike on his own.  This bike also would allow for Sam’s short inseam.  Other bikes that would allow for such a small inseam are not adequate for Sam’s size and weight.  He has a very long torso but a very short inseam (common with persons who have Down syndrome)

Please authorize this piece of adaptive equipment, the Discovery Bike, for Sam.  If you would like to talk with me further about this subject please contact me at your earliest convenience. 

Thank you for your time

RaeAnn Collins (mother) 

Tuesday, January 12, 2010