I hate tax season. When I start compiling all the documents, look at our W2 forms and realize where all our money has gone. A good amount to charity, not a great amount, but a nice amount. Money we worked hard for and in David’s case a lot of overtime. Money we are saving for retirement seems to dwindle each year. Vacations become more camping trips and economical. Holidays and birthdays become less extravagant and more meaningful.
CNN reports that the “average cost” of raising ONE child from birth to age 18 is a staggering $245,000. That is a quarter of a million dollars. This is the “average”, according to the report those in the Northeast can expect to spend an estimated $455,000. A half-million dollars and costs are rising. And that doesn’t include what your family may pay for auto insurance, driver’s ed, tutors or college costs (or the cost of your 25 year-old that continues to live with you).
Let that sink in for a moment.
If you live in the “more affluent” Northeast, you will spend half of a million dollars to raise, feed, school and house your child. With no extras, like the concert she has to go to with her friends. Healthcare costs alone are an estimated $20,000. For ONE child. One child who is HEALTHY.
What if they are not healthy?
Over the course of 2014 Bridget cost me about three months of unpaid time off for doctor’s appointments, therapy appointments, hospitalizations, etc…Travel costs to GA cost almost $1000 (what we could have spent on a family vacation). Traveling to Boston for doctor’s visits and to therapy appointments put over 2,000 miles on my car and over $100 in parking fees. I do not even want to estimate the fuel costs. Then we include the actual cash it took to pay for her supplemental insurance ($2500) as our family coverage does not cover all of her needs, her LoJack ($330), the physician in GA ($1000) that wasn’t covered by our insurance and miscellaneous therapy toys/devices. Special swim classes, IPad programs and daily living expenses.
It adds up and compounds.
Since Bridget birth the lost wages alone is gut clenching. Adding up the cash (or credit) paid out in 2014 our family spent almost $5000 in healthcare costs for Bridget. According to CNN the average amount (estimated) you will spend between birth and 18 years of age on your child will be $20,000 in healthcare costs.
That is an average of $1,000 a year. Bridget cost five times that amount. That cost will rise as she ages. Yet Bridget is relatively healthy. There are children much sicker and families who are not in a position to work a second job or dual income. These are healthcare costs, not including the “other” expenses we will incur. For example, having to buy a larger car that fits her secure seat and has a trunk large enough to place her wheelchair. Gosh I miss my little car.
I can’t believe how much it costs our family annually to give Bridget all she needs. At a 4% annual cost of living increase, over 18 years Bridget will cost our family (estimated) $129,000 for her healthcare. This is a conservative amount as healthcare costs rise much higher than 4% each year. For our family, Bridget’s healthcare will not stop at 18 years of age. We will be responsible for her care for the rest of her life.
Yet we are beyond lucky and grateful that Bridget has two insurance policies. Without them her care would have cost our family $10,000 in the month of January. TEN THOUSAND DOLLARS for 30 days worth of care. Her medications alone would have cost us over a thousand dollars. I give thanks daily that we are one of the fortunate ones. There are many less fortunate family situations. There are others in states that do not allow you to purchase supplemental Medicaid so your child can flourish.
When people tell me they are against Obama/Romney Care I try to explain to them they have no idea how precious health insurance is until you cannot live without the coverage. The time is now to allow all families in this country to be allowed to access the Medicaid system as a supplement. Yes, we pay a portion of the premium and we are thankful. Having to pay two premiums are budget constraining for sure. But the alternative?
We willingly give up the salary, the extravagant vacations, the “extras” because we wouldn’t want to imagine our lives without Bridget.
Cost is no object.
This is how I answered the Finish the Sentence Friday prompt: “I can’t believe how much it costs to….” Hosted by:
Kristi at Finding Ninee
Allie at The Latchkey Mom
Anna at FitFunner
Kelly at Just Typikel
And me!
(Editorial note–This post is not pro or anti Obamacare. What I am pro-for is that families with disabled persons should be allowed to purchase supplemental Medicaid to cover expenses for their loved ones. Without sending that family into poverty)
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(Un)Diagnosed and still okay 
Oh Kerrie, ouch. I can relate to this so much. My husband is self employed and we’ve had to pay for our own healthcare for over a decade – at one point our premium was double our mortgage, but we couldn’t drop or switch plans, because Barrett would be considered “pre-existing” – that is if an insurance company would even cover him! There is much good and bad in Obama care, but most important to me is that Barrett can no longer be denied coverage! I respect you so much for writing about this. I did not have the guts. Bravo.
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That is the biggest boon as far as Romney (I’m from Mass so that coverage was first) care and now Obama care means to families. That pre-existing no longer means oh we don’t have to cover you. I don’t know so much about guts. I had another post in mind, then I saw the CNN report and BAM I vented. David will probably not appreciate me sharing so much, yet it is so important. For people to realize how much a child with a disability costs and while we don’t want to take advantage of the system at the same point we need the system to work for our children.
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I am sitting here in stunned silence. I am so sorry. Oh it’s just awful. Once again I offer up silent thanks to Tommy Douglas who pioneered universal health care here in Canada. We are lucky. But most folks here don’t appreciate that. They need to read your post. Am sharing.
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Oh gosh…I didn’t mean to sound whiny I swear! I am so thankful that we have our employer health insurance and can afford the Medicaid supplement. But still at tax time when it is in B&W the amount we spend is staggering. IT doesn’t take into account the lost wages or miscellaneous items. Thankfully my husband can work overtime to help but so many families this is not an option. Healthcare, I know, isn’t a right. Yet when you have a child that is disabled you see how very important healthcare reform and coverage is.
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You don’t sound whiny, and I’m fabulously thankful for whatever finagles happened between Obama and insurance and other insurance to mean that you only have to be very careful, rather than on the streets.
Like Kelly, I spend too much time not realising how incredibly, incredibly blessed I am to live in a country where the healthcare is SO good…and FREE! That is truly, truly incredible.
I just hate how much profiteering happens at the expense of the ill and disabled in other countries. It’s one reason we will never leave England – if we had to pay even insurance and whatever for Husby…we’d be done.
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Before Bridget I had no idea. I would think these people were a bunch of freeloaders using my tax dollars to finance their health care. Okay, not true when it comes to the disabled but sadly there are those who do take advantage of the system. Worse there is so much profiteering. When the CEO of a non-profit health insurance company is making millions of dollars and the subscribers are paying thousands out of pocket there is a huge problem.
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I couldn’t agree more, and I suspect the corruption in the upper levels of the business of these things is FAR more costly to the taxpayer than the few freeloaders.
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Just last week (yes, tax season) my husband was reeling off very large numbers to me related to various doctors and therapies. It’s astounding. And prohibitive. And as you say, “Cost is no object.” Thank you for bringing so much to light here.
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Thanks, Nicki. It is prohibitive and while you don’t want cost to be an option for so many families it is a choice between food and therapy. You don’t realize it until BAM tax season!
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Excellent post Kerri. I used to work in insurance and it broke my heart talking to a lady one time whose insurance had gone up so high she couldn’t afford it but she needed it. She had to take a higher deductible and take her kids and husband off the plan just so she could continue to have the coverage. That was just the beginning of how much worse it got. In some ways it’s gotten better but yes as you know there are pros and cons. I feel incredibly lucky to have great insurance through the military even though my husband is now retired. I would say that has got to be one of the best benefits of a serviceman.
I’ve shared your post.
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There is another PACS1 mom in NJ who gets 1/10 of the services Bridget gets since insurance laws are not nationwide. I am not sure the answer, but I am sure there should be some type of universal coverage for those who are disabled.
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oh! kerri
Like minds huh!
My post is also highlighting the cost of each child in today’s economy and ended it with a big hug and being responsible as parents.
xoxo
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This is incredibly alarming and actually devastating. I can only imagine how much you will spend in the future for that precious girl to be healthy and happy and grow and thrive… the amount you already have spent is staggering. And you are so right- it could be much much worse.
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I almost wrote about how much more money families with special needs kids need to spend on so many different things and love that you took the route with insurance. It’s just heartbreaking that people have to pay so much out of pocket. But like you said, what are the choices? There aren’t any. I’m so glad you wrote this and linked it to FTSF. Sharing sweets!
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I come from Europe, where welfare -including healthcare- is free. Schools (great schools) are free. When I hear some of the reactions against Obamacare I feel as if i came from the moon. What do people think? What does it mean to live together as a people and s a polity? What are taxes about? Why do those who would desperately need affordable health care often speak against it?
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Having a special needs kid is definitely expensive. I can sympathize with that. I’m not sure what is the right answer. A lot of the health care costs in the US are preventable (that’s one of the topics that I blog about quite a bit), but in the case of Bridget or of my oldest son preventive health care will not make much of a difference. I can only hope that universal coverage may make a positive difference….
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It blows my mind how much healthcare costs, even when you *do* have health insurance. I feel so fortunate every day that I have it, knowing how much more it would cost without it. When the NY Times rans the article a couple years ago about the cost of childbirth, I was pregnant with my daughter. I think I paid some nominal fees to have her in a very nice hospital with great care. To think what it would have cost if I didn’t have health insurance? And for people who do have major health concerns? Oh I can’t even imagine! Thank you for sharing. (And by the way, you don’t sound whiny at all. If anything it was very eye opening and informative.)
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This is mind-blowing and eye-opening. I’ve loved the FTSF posts this weekend. Sheesh, they’ve been heavy.
I moved to Mass a few years ago, pregnant and without a penny to our names. We had just moved west and the economy crashed and we were petrified. Healthcare really came through for us. It was much harder with Des, actually.
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It never stops blowing my mind how much people have to pay for health care that they need. It makes me so sad. My two sons with special needs don’t have as many health concerns, but it still adds up between the vests/toys/apps/carriers/etc that make our days manageable and the 5 therapy visits a week. Hugs, mama!
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To see the dollar amounts you write here is staggering, Kerri. And as you say, despite the costs to your family, you are the lucky ones. You do what you need to do, but not everyone can. I read the comments from Kelly and Lizzi, and it makes me angry that the U.S. is so inferior compared to other countries.
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I know every state is different and some do and some don’t offer some type of TEFRA Medicaid. Most people do not know about it, that’s the worst part. According to this websitehttp://www.hdwg.org/catalyst/cover-more-kids/tefra Massachusetts does offer TEFRA. Maybe that’s what you have, not sure. Just wanted to share the information.
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I am beyond lucky because we are allowed to buy into the Medicaid program as a supplement to her insurance. The shame is that all states are not required to have this type of legislation.
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I don’t know if you will get this or not but I didn’t want to respond on the blog. Do you know what TEFRA is? It’s also called Katie Beckett waiver or Katie Beckett medicaid. Here is some information but there is loads out there if you search. http://www.familyvoices.org/admin/work_healthcare_financing/files/ma-kbw.pdf . My son has it. He is similar to Bridget in that he has a chromosomal disorder, rare but not as rare as hers. He also has autism. We live in SC and he has TEFRA. We had to apply and show proof of his disability and we recently went through another reevaluation to verify his eligibility. Basically it is for children with disabilities who would be considered institutional in their level of care. It allows them to live at home and receive health care that they would receive in an institution, at home. We do not pay for his Medicaid. I don’t know how all states work but I would think that you wouldn’t pay for Katie Beckett medicaid. I could be wrong. I just wanted you to have the information and please share it with others.
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THANK YOU!!! So very much for sharing this information. It is incredible, seriously. It is heartbreaking that this isn’t available nationwide. It amazes me that every few years Bridget has to be “recertified” as disabled. I’m always like dude I would so like her to magically not be on your system.
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> I’m so glad I can help. I wish more people knew about the program and it was shared more often. We just recently went through our first recertification. I can live without having to go through that again so I know what you mean. It’s amazing what Katie’s mother did and I’m glad Reagan did the right thing. It’s unfortunate that it’s not nationwide but I’m grateful to have the program at all.
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Here is a great article about Katie Beckett and the waiverhttp://parenting.blogs.nytimes.com/2012/06/06/because-of-katie-children-with-severe-disabilities-can-live-at-home/?_r=0 .
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