Rant

[Dara]

Well, we were turned down by CHIP and SSI. We make too much money to get any help but not enough money to afford anything. We have no health insurance so we cant afford to do the $1000.00 blodd test Sammy needs or the $4000.00 Sleep study he needs or even go to the Dr to get him tested for MS. That doesnt even include the therapy he needs that we cant do. How are we supposed to help our child? We can barely afford normal household bills let alone medical expenses? I dont get it! We have these kids, who have all of these special needs and the cost of helping them literally breaks us and there is no assistance for us who dont live in a cardboard box or make millions. I am so frustrated and lost! I dont care if you are a democrat or republican. It shouldnt matter! These people in washington should stop bickering like 2 year olds and put their differences aside and actually have an intelligent conversation about what we really need! We should make sure that all of our citizens are taken care of and looked after.
On a good note, the school Sammy is going to has been amazing! They really understand these kiddos and do everything in their power to help. They have a behaviorlist on staff that I spoke to for an hour on thursday. She thinks that it is insane that people have told us that it is something subtle we are doing and that the rages are less likely behavior and more likely his brain having some problems. She is trying to find someone to work with us either Pro Bono or at a reduced cost. The support system at this school is amazing too!
Well, sorry about my crazy rant... Hope everyone has a good Thanksgiving!

 

[klmno]

Have you tried to get some of this thru his IEP? I'm really hoping that something gets passed soon for medication care. My big concern is eliminating the problem of "pre-existing conditions".

 

[Dara]

He is going to finally be tested with the SD on December 16. We started this process in October so...
I think that I am just very tired and not feeling well so I am fed up with all of this nonsense and I am tired of fighting. Maybe once my asthma gets under control again I will feel better and have a new strength but until then...
My entire family is uninsurable so We cant afford anything.

 

[susiestar]

Is there any chance your husband could get disability for his MS? It might be that he could, and the kids would get some benefits because that. Janet would know more.

Also, have you applied for disability for Sammy? The Pervasive Developmental Disorder (PDD) and brain damage might qualify. Disability comes with medicaid.

Just thoughts. You will probably need an attorney to fight for these things. Many will help for a portion of the first disability payment.

Also lok into a Katie Beckett waiver. May not be spelled right, and others here can tell you more about it.

I know the financial frustrations. I am sorry. When husband was in grad school he earned $800 a month. At that point if I earned $200 a month we wouldn't qualify for CHIP. If we hadn't lived with my parents we would have starved or been homeless.

I hope things get better. Take care of yourself so you at least feel better.

 

[Dara]

husband cant qualify for disability because it wont pay enough for us to live off of. My job does not pay anything. We did apply for disability for Sammy but we make to much money to qualify. We have the doctors reports to qualify medically but financially we make too much! It is really a crappy situation right now. You said it perfectly about if you didnt live with your parents... We dont have that option so we are stuck!

 

[tictoc]

Hi,
I wish I had some advice, but I'll just have to offer hugs instead. I am so, so sorry. Rant all you need to because that just hoovers, to borrow a phrase.

And, I totally agree...something must be done for all of us. Even with fairly good health insurance, our share of Bug's therapy, Occupational Therapist (OT), dr visits, and medications per month is about $500. I could rant for hours.

I hope you have a nice Thanksgiving.

 

[Mattsmom277]

I get so saddened when I read threads like this. So many posts like yours in the 9-10 years I've been coming to this board.
I too hope that your government puts aside differences and passes a quality health care plan for all, that allows you all access to affordable and decent medical treatments and testing etc. I find it sad that the richest nation in the world is so behind alot of other nations in paying homage to the people that make the country great by ensuring their basic human needs to medical care are provided.
Living in Canada, I hear complaints about our medical system. I've done it as well, complaining. We have a long wait time to get a family doctor (years and years) and it can take ages to get into specialists. It can also require lengthy trips to get certain tests if you live in smaller communities. Yet, despite perhaps waiting longer for certain things here, we do not get medical bills. Period. No charges for doctors, medical tests, hospital stays, surgeries. None of us see a medical bill and boy what a relief!!
I went through a agonizing few years of limbo before a final diagnosis of MS. I do have to travel 2 hours away to see a neurologist, but I get reimbursed for gas etc for the trip by a program from the government (everyone qualifies, it isn't income based). I was even able to travel to the US for a surgical procedure that would have taken years to get here (lack of surgeons in that particular speciality) so our health care paid the US surgeon and hospital. Again, I saw no bill.
I know we here have a flawed system in some regards. But boy, we have it GOOD. I hope to hear soon of a far reaching realistic health care plan for you all. It is far past time.

 

[TerryJ2]

Arg. I hate it when people fall through the cracks. There is a ray of light, though: She is trying to find someone to work with us either Pro Bono or at a reduced cost. The support system at this school is amazing too!

{{many hugs}}