Non-verbal Kids Seeks iPad brought in a whole lot of discussion from parents who would also love to be able to provide their kid with an iPad.
As I’ve done more and more research about an iPads doing what it’s $4,000 dollar counterpart does, yet still not being covered by insurance, while the $4,000 dollar version is, I couldn’t help but wonder why.
(Our insurance wouldn’t touch ANYTHING in regards to Parker’s speech issues as they are due to his Down syndrome. Lovely, no?)
In every iPad giveaway I entered there were many entries talking about how they wanted to win in order to use the iPad as a communication device for their child with special needs. Either because they didn’t have insurance, their insurance wouldn’t cover it, or their school districts didn’t have enough of what was needed to go around.
I got to thinking.
How many pieces of medically justified technology do insurance companies refuse to touch?
And why?
How many insurance companies have a deal with Medicaid that makes it waaaay too lucrative to mark an LTV Ventilator as patient owned, while they didn’t think twice about pawning off a ready to pass out oxygen concentrator on you.
How about a portable oxygen concentrator that would pay for itself in a year. At $35.00 a pop for oxygen bottle refills it makes no sense for an insurance company to refuse to pay for a battery operated concentrator that you could take with you AND refill your own bottles with.
Unless of course your insurance company owns the company that provides your oxygen bottle refills and really likes the money it makes from each oxygen bottle you empty?
Ka-ching!
If you need something, and your medical professionals can justify it….I want to hear from you in the comments section. Tell me what it is you need.
I’d like to hear about what your kid with special needs might need technologically that makes more sense than the multi-thousand dollar solution your insurance is trying to push off on you.
(Because it makes more money for them. Ahem.)
If you had the power to make YOUR kid’s life better, and didn’t have to rely on insurance company’s decisions in regards to what THEY thought was most appropriate, what would you choose for your child.
What would you choose for your child if funding wasn’t an issue?
After we have this conversation, I’d like to introduce you to someone who has big dreams of making some of these wishes come true.
Remember though, we are talking actual items here, not creating world peace, or suddenly making you 10 pounds thinner, or providing you with a night nurse that actually showed up with they were supposed to. This discussion has great potential. But that potential does come with a few limitations.
You’ll want to take the time to leave your thoughts in the comments section. You never know when a wish might be granted.
PS: While you are here will you join up on our new Google Friends. This makes a big difference when it comes to good SEO and good SEO makes a big difference when trying to attract the brands that might be able to grant a few wishes.?
Our son’s Dr.s have suggested we purchase a bed with a safe sleeping enclosure for our son. Insurance however does not consider a bed with special enclosure as equipment they will cover. Why is this type of system necessary?
Because
- he sleeps with CPAP and oxygen at night.
- has a paralyzed vocal chord and is at risk for aspiration (his last tube feed is at 9pm) his cry would not be audible from other room even over a monitor
- he will wander dragging expensive medical equipment behind him if we are not in the same bed to keep him still
- he has been sleeping with us for 5years since he would climb out of his crib
- the biggest reason is that he has pulmonary hypertension and is having acute life threatening events exacerbated by crying and getting mad
The safe sleeping unit the dr recommends is $8000 and has a canvas and mesh enclosure around a normal hospital bed. It is 40+inches high meaning it will last a long time and he cannot climb out. Our son who will not stay in his own bed even in our room, will sleep in this enclosure and has used it before at the palliative support center he has stayed at in our city. While others may argue that a bed is not medically necessary we disagree. In this type of bed he is safe, his equipment is safe and while we would still be sleeping in the same room with him (to react quickly to get the cpap off should he vomit – he is a chronic refluxer)we will get our bed back and perhaps some sleep so that we can be refreshed the next day. Has anyone found a way to fund the puchase of a hospital bed?
My wish would have to be for a oxygen concentrator system that would allow us to fill our own SMALL tanks. Medicaid provides us a huge concentrator that practically doubles my electric bill during times when my son is using it all the time. They provide some E tanks as the portable form(which they have to come out and pick up for filling). E tanks are huge and heavy. When you already have a large amount of equipment that must go out with you any time you leave the house, having to figure out a way to drag a tank along can be very frustrating. I can not imagine that a truly portable system which allowed us to refill tanks ourselves could cost more then what they are currently doing.
Tammy after seeing Junior use the ipad and the difference it is making in his life I sure wish I had the funds to get one for Parker. We have tried many systems for communication and this is the first one that we all love and Junior wants/demands to use.
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Hey Tammy! Ooooh! THis one is loaded! LOL!
I, too, have been wondering about the iPad/insurance coverage deal. Christopher goes to the Rehab Institute of Chicago. We have all written both to insurance companies, and the Bill Gates Foundation in hopes of geting them covered or supplied somehow. Crickets….Christopher could do so much more if he had access to one.
Another big one for us is a generator. We are supposed to have one, but can’t afford it. Insurance won’t even touch it.
Portable ramps to keep in our van is another one. There is no way we are going to be able to afford a full sized van. But they have foldable ramps that we can use to help get his wheelchair in the van because one person can’t lift it by themselves.
Just one of these would make our lives soooooo much easier!
Hugs!
Steph
Having 3 kids with special needs is complicated. The iPad would be a life saver for 2 of them. They try to communicate and most of the time because we are with them all the time we can figure it out but for those that are not familiar with them it is hard. Boy, what would we do with something that might make life a little easier for everyone?
Another is a generator also. I do not think that the insurance companies are too concerned with our little ones in case of an emergency. You can only have so many portable oxygen canisters around they cannot go with out oxygen. I know I do not have even 72 hours of portable oxygen.
There are so many people with special kiddos and no help. It makes me so angry to see these little ones put at the bottom of the list.
Our insurance does nothing to cover Evie’s speech issues. An Ipad would be so wonderful/
This is a response to Stephanie…
Stephanie, I have two sets of portable ramps. I had purchased on for my youngest daughter, and then when I adopted my newest son, he came with his own set. I can only use one set, so if we can figure out how to get it to you, you are more than welcome to my extra.
Deborah
email me if you like – nickersonhome@aol.com
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The main thing I need is a service not a product. And just try getting that through insurance!
My whole house is carpeted. Underneath the carpet is hardwood – the old kind that needs refinishing and sealing. I have two children in wheelchairs and moving through the house on carpet and walkers/braces just isn’t working. So, my son with spina bifida who is paralyzed from the waist down, prefers to drag himself through the house rather than fight his wheelchair. My daughter who has intractable seizures would rather have someone constantly by her side to catch her from falling during a seizure than to fight her wheelchair.
Medicaid would just laugh hysterically if I asked them to help with that.
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I have an 8 year old with DS that gets frustrated when we can’t understand what he is trying to say. I didn’t know that the Ipad could be so beneficial to him until I read your post. I have always been worried that a speech device would cause him to quit talking, but his speech therapist at school told me that it would actually help him. It would be so wonderful for him to have an Ipad to help him communicate.
Another thing he loves is the touch screen computers at school. His little hands have a hard time navigating with a mouse on the computer at home, but he is an expert on the one at school. He loves Starfall.
We have been blessed with a very healthy boy. You have opened my eyes to just how blessed we are and what others go through with children with special needs. Thank you for all your wonderful information. Oh, and your Parker sure is a cutie pie!
Twitter: AMomBlog
says:
An iPad would be a great learning tool for my son even though he is verbal, his learning disabilities could be helped with one but he also needs services: speech therapy, occupational therapy and social skills therapy that the insurance covers maybe a two months of before he’s maxed out those funds for the year.
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We need a surgery that insurance doesn’t cover and a stroller. We dont’ need a wheel chair but a Stroller. 500 bucks but with all the other medical expenses you can forget it coming out of our budget.
I would love to have an IPad for Noah. He gets so stressed out because noone u=understands him. Sometimes he gets so stressed out he makes himself. sick. I’m sure he would love to be understood for once.
I AM smarter than our insurance…our pediatrician recommended that we should have a nebulizer on hand for my son who has trouble clearing his airways when he catches a “mild” cold – reactive airway disease/asthma it is unclear at this point. Insurance approved the purchase of a nebulizer with a $66 copay. I found one on-line for $29, total – insurance paid nothing. I know this is really small potatoes compared to the things the other moms have commented on here, but it is indicative of how messed up the insurance system has gotten. They would have paid $132 for a nebulizer if we coughed up $66, but when I found one for $29, same quality, etc. nada. Maybe that’s why they don’t have money to cover therapies for my daughter with ASD…including basic check ups with her developmental pediatrician. dumb.
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Yes, our speech therapist also recommends an ipad over the $8000 augmentative communication device. However, I can imagine the insurance companies’ concern over potential for abuse there. As long as health insurance is a business, my gut feeling is that the ultimate goal is to let our children die. I had my son Joey, who has DS, at 20. Growing up with my mom and grandma as doctors, I’ve known since a young age not to trust in the goodwill of insurance to take care of the sick. So far, there has not been a problem but I’m fast-tracking my way through college because it feels inevitable. I’m especially worried for the risk of childhood leukemia and his outlook under Medicaid insurance.