Sometimes, life is just hard. I try not to complain too much but this new high deductible health care plan has me all riled up. Take the last few days, I tried to do some very simple things, but they took vast amounts of time and energy. My actions, of course, will save an employer some healthcare dollars and you will undoubtedly read about how these new “high deductible” plans are really working well at reducing healthcare costs. “Saving” healthcare dollars, in this scenario, will not be an accurate statement. What they will do is allow fewer resources to people who need it the most and most likely, force them on the federal Medicaid program.
Scenario #1: I need to order prescriptions for dear son. Sounds simple. Traditionally, you’ll pick up the phone or you’ll mail in your co-pays and you are done.
This weekend, I attempted to order some medications for dear son. Dear son has intractable seizures, a vagus nerve stimulator implanted and GI issues related to his rare gene defect. He is on seven seizure meds and two GI meds. Prior to the start of the high deductible plan, I ordered all nine meds via mail order and paid my co-pays. I am almost out of two of the meds. Normally, all nine meds are on a schedule that I have created to make certain I have prescriptions for all nine meds-one prescription for mail order and one for the retail pharmacy.
I spent the weekend counting out all the pills and calculating all the liquid meds on hand. I went into the pharmacy calculator on line and calculated out the strength and amount required for each med. It cost over $1500 retail and over $1200 mail order for 7 of the meds. The other two I did not calculate. After this, I created a schedule for the next four months on what meds I could order each month, so I don’t run out, and because I can’t afford the prices for these meds since I pay for ALL prescriptions 100% out of pocket with the new plan until the high deductible is met.
After all this, I come to find out the ped neuro “nurse” wrote dear son’s mail order prescriptions with the WRONG patient name and they are not valid. (Despite the fact she was sitting in the hospital room looking at dear son when she wrote them.) Ped neuro doc has never made a mistake writing out prescriptions in 14 years and ped neuro nurse writes one prescription and can’t get it right. I can’t afford to order them retail because the retail cost for 30 days for “one” of the meds is $355.00 and the mail order cost for a 3 month supply is $255.00. I need to order three meds and not just one, so the price is much higher. The high deductible plan is costing me a lot more out of pocket but saving the employer some cash.
Scenario #2: Dear son needs a bath. Normally, his Dad gives him a bath once a week because I can’t lift him at 130 pounds into the tub. Son is 14 and desperately needs a bath so I attempt to do this on my own. I use an old bath chair from when he was 6 years old because the insurance will only pay for one chair and his Dad has it. I guess that means no baths at his Mom’s. Dad lives 50 miles away and it’s not feasible to haul the bath chair back and forth. Because I live in an apartment, I don’t make any physical changes to the structure of the building for baths. I have heard the statistic that 90% of all disabled children’s parents get divorced, so we are a statistic. This bath scene is repeated in many households.
The DME limit on the new high deductible plan is $2,000 a year. Do I purchase this bath chair or get the new wheelchair?
Scenario #3: Dear son needs a new tilt wheelchair because he can no longer sit up and support himself and it is compromising his breathing and feeding according to ped neuro doc. He chokes on food because his throat muscles are deteriorating. The last wheelchair costs $10,000. New DME limit on the new high deductible plan is $2,000 per year. Looks like there is going to be at least an $8,000 gap that I can’t afford so I put off ordering a bath chair and getting a much needed wheelchair.
Scenario #4: Dear son is getting heavy due to one of the meds he is on and gains 50 pounds in 6 months. While in the hospital, the physical therapist determines I might need a Hoyer lift at home since it is taking 3 to 4 heathcare workers in the hospital to change dear son’s diapers. She orders a Hoyer lift that arrives in two days in the home. The Hoyer lift does not fit under the sofa nor does it fit under the bed therefore it’s not usable. It’s too difficult to lift dear son in/out of the car and take the wheelchair to the hardware store to figure out what is needed or to get casters to raise the bed and get them installed, so I do nothing and continue to lift him myself.
So, you ask, why not get some nursing care in the home to help with the baths and the caretaking? Because of the high deductible plans, I don’t have money for that.
What about Respite Care? I went through the $1200 limit in 60 days last year when dear son was released from the hospital and couldn’t move. He spent 32 days in the hospital because the surgical nurse put a too large feeding tube in him that blocked the stomach opening so he vomited for months, endured several hospitalizations and nearly died until a radiologist figured it out. I used the Respite dollars so I could get some relief so I could go grocery shopping or for an extra pair of hands to help me out.
So that’s the wonderful world of healthcare. The next time you read about how much money the high deductible plan saves, remember this example. The only reason it’s saving money is because people don’t have the money and aren’t getting services they need. It did nothing to help these patients.
Of course, there is always another option. Get on Medicaid where you don’t have to come up with the money for the prescriptions and you can get some care that you need. Of course, that lowers reimbursement rates for the physicians who do an outstanding job of caring for dear son. We’ll read all the press about how the new high deductible plans saved x% for the employers. We won’t read about what patients, in this case disabled children are doing without, while they are on these plans. We won’t read about it when it drives them to the Medicaid plans, at least until the government figures this out. But no one will of course, because they just don’t get it.
A midwest mom shares and reflects on the love for her Dear Son Matthew and the challenges of everyday life with a severely disabled young man. In addition, she shares her love for decorating, organizing and keeping a clean home. ©2006-2024. All Rights Reserved.
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3 comments:
My son was a month shy of being three when his seizures began--grand mal and myoclonic. Up until that time he had experienced a typical development. Overnight our lives changed forever and the "real" journey began. His seizures have never been controlled and now at age 23 he also carries the diagnosis of intractable epilepsy as well as a moderate mental disability, caused by lack of oxygen when the seizures first began. He is currently on 7 medications-5 seizure meds--1 med to help with drooling and 1 med to help increase his appetite. He also has a vagal nerve stimulator. He is #3 out of 4 children all born within a five year span. What can I say--we were young and enthusiastic!! 18 months after our son had his first seizure our youngest son also started having seizures-- 2 months shy of his third birthday. He has been seizure free for 18 years on 1 seizure medication. Right after this all happened my husband changed jobs and the new job would not take any pre-existing conditions--We could not get health insurance for either son,-the hmo we had been in let us continue coverage as pay for fee patients--higher premiums--higher co pays and no coverage on any meds. we payed out thousands of dollars on one middle class income--always making just a little too much to qualify for any other kind of help. Meanwhile the costs just kept rising. It was an extermely stressful time in addition to all thatwas going on medically for the boys. We did this for three years until by the grace of God there were some changes in the insurance and we were "back in" with coverage for the whole family with a renewed appreciation for a benefit we had at one time taken for granted when everyone had been healthy. Today my son who is 23 is on medicaid.
Zoe, Thanks for sharing your story with me. Yes, the financial struggles can be overwhelming at times, it just costs so much. I can't even imagine how difficult it would be with more than one child having seizures. You must be a very strong woman to handle all of that.
May God bless you and your family.
This floors me.
I don't even know what to say except that I am shocked.
I can't even imagine what it must be like to (1)have a child with disabilities (2) try to pay for what they need just to have comfort - baths and a wheelchair so they can breathe easier.
Just reading your posts gives me insight that I can use when patients like your son come to our ER for (hopefully) less acute problems than respiratory distress or seizures...
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