Thursday, March 17, 2011

wanted: a hole to crawl into

am feeling a bit overwhelmed today. 

i have my regular old to-do list that's nagging me {including leah's christmas present - that weighted blanket i have all the supplies for but just haven't found the time to make.} but i have this entirely different to-do list and i don't even know how to tackle it. 

you see, leah has a lot of needs. and there are ways to get those needs met. there just isn't a guidebook on how to do it all. and i'm not the sharpest tool in the shed when it comes to government organizations or insurance companies or even special needs in general. 

my biggest concern for leah is her communication. the poor girl has so much to say and has so many opinions but her dummy of a mom just can't figure it out. i'd love this or this to just show up at my house. but that's not going to happen because they're both $15,000+. i made some headway today by speaking with a speech therapist referred to us by a friend. i now need to get a prescription from her doctor for speech therapy as a first step. beyond that, our private insurance will pay $2500. that's great. really, it is. every little bit helps. but i still don't have a spare $12,500 hanging around. we need to get trials to see which one works best for her - or if they don't work for her at all. and then she has coloboma so we have a few other kinks to figure out with her eye gaze. we have to get reports written up by various therapists and doctors who have worked with her as well. and i'm getting yelled at on every end for not enrolling her in medical. 

that's a whole different story. 

not that you can just enroll with the blink of an eye anyway. there are a lot of things you have to do to get there. and i haven't felt good about any of them. these government programs are in place for a reason. and i'm so grateful for them. but i don't want to take advantage. i've known a lot of people who have taken advantage of one program or another and it drives me up a wall. they're there for those in need, not just for those in want. we have a need, but i'm not sure it's great enough to insist california pay for all things leah-related. 

but then, how great would that be? 

i've had the paperwork sent to me twice and i just haven't felt good about it. and then i found out today it's nearly a surefire way to get an eye gaze device paid for in full. 

all the while, i have the cutest little four year old hanging on my arm, staring into my eyes, trying to tell me something. anything. if i could only understand. i know this computer would help, but i just don't know how to morally go about it. 

there are lots of other things we could insist upon, but we don't. therapies, respite, even diapers. again, these services are offered for a reason and i know lots of people who get them and truly need them. then i think that we're not getting any of these, so can't we just get a computer? 
leah also needs a new stroller. she's still in an umbrella and she's just getting too tall. it does not look comfortable. they have special needs strollers that are relatively inexpensive {still a few hundred dollars}, and they have stroller/wheelchairs that are awesome, but a bit pricier. i truly am grateful she still walks, but she can't walk long distances and often trips and falls.

am i reading into it too much? am i being unrealistic? is the computer necessary? should i take advantage of programs offered without feeling guilty? 

can i just crawl into a hole and come out when the problem is fixed for me? or find a money tree? that would work too.

for now, i'll just try to slowly check off my phone call to-do list. insurance company included. if i have a blank expression on my face for the next few months, you'll know why.


Rob and Marseille said...

I'm sure you are praying about this, so my only other advice/opinion is to think about how you felt about paying for part of it. I'm sure the government agency wouldn't mind you paying for part of it, or at least making a donation. I agree that we shouldn't take advantage of government programs, but if there is a short term need/you are doing everything you can to be self-sufficent, it's ok to use them. Would you say no to a Pell Grant in college or a new home grant? those things are pretty automatic if you qualify & fill out a fafsa or filed taxes including your house, you bought during the time they were offering them. (well,for the people who bought houses during that time)

carolee said...

In Utah, there's a place called the Utah Assistive Technology center. They own tons of equipment and check it out to individuals to try. Sort of a try it before you buy it type thing. Maybe Cali has an assistive technology center too?

I'm so sorry you're overwhelmed. Hugs to you from us!

Molly said...

I don't know much about it all, but I say anything that would allow her to communicate with people is an absolute necessity. You know everyone you know would be willing to contribute... Or at least I hope you know that.

JourneyBeyondSurvival said...

It is a hard question to ask. It comes down to absolute necessity for us though. We figured out that our family lives on roughly the same equivalent that it takes to keep my daughter rolling along.

That's not even factoring in that when we got our wheelchair we had to buy our own new transportation, or every time she loses a skill, that means new adaptive equipment that isn't covered. From seating, to eating (four completely different stages with different equipment that isn't covered)

The truth is that our girls become more expensive the more their necessities are neglected. I would definitely classify communication as a necessity, and I do. (we've just prioritized, and it's down the list a ways for now)

See, there can be huge behavioral problems, not to mention psychological effects like anxiety and depression in the future. This makes our children more expensive to teach in a school. MOre than they already are.

It makes it more difficult to maintain a quality of life for my baby girl after she graduates out of the school system.

Pray about it.

You'll feel better once you have someone backing you up 100% that you believe in too. My thoughts are with you!

whitney said...

it sounds to me like you have an need for these things and you CAN'T pay for them... i.e. "don't have a spare $12,500 hanging around." maren, there are definitely people that take advantage of our government, but in this case you are not one of those people. maybe look into keeping your private insurance as your primary insurance and medical as your secondary... that way you're at least contributing what you can and then the leftover expenses you just can't come up with by yourself will be paid for by medical.

one other thought, what about a loan for the the computer?

The MacDonald Family said...

There are so many things that are a necessity with our girls - seating, mobility, communication and they are all truly necessities at which point it's not a matter of should we get them it's how are we going to get them. Many times there are 2 prices for things, you could ask if there is an out of pocket price and it may be much less than what they would charge the insurance company. For us we look at the price, if we can handle it we buy it ourselves, if it's out of reach we go through insurance - our computer went through insurance the $16,000 was not even an option for us, but the $3,000 in stands that we needed to go along with the computer we picked up (with the help of family). In addition anything that insurance pays for when it's out grown we do not sell it, we donate it or give it to a family who can use it (like Annie's walker, it's too small so we passed it on to another family) - it's not fair to make money on something you didn't pay out of pocket for. It's a balancing act but I totally agree with you about only taking what you need, i've known people who are actually making money by abusing the system - which is why health care is such a mess today.
Good Luck, you'll do the right thing! Hugs

Morgan said...

i agree with whit... you are in need, you are contributing members of society, you are not taking advantage of the system. i also agree with what the others said about paying what you can and letting medical take over the rest.

i am sorry that everything is so overwhelming. just reading this makes me overwhelmed and i'm not the one who has to take care of it all. prayers and good thoughts being sent your way!

Erica said...

I hear ya, and I felt similar at the beginning. especially about diapers. but I was encouraged by the regional center to request them be paid for. and Im so glad we did b/c every little bit helps.
I feel like if its there we might as well take it-thats why the help is there-because we have needs. they really arent just wants. respite is so important to us. to be able to get away for some fun as a couple is invaluable. and we dont get the entire bill paid either-we pay some of it ourselves. Same with the ABA. Reg Center only pays a little over half. And we would never be able to even think about a communication device with out MediCal. Still not sure if they will fund 100%, but its looking good. I like Bridgets idea-pay for what you can afford and ask for help with the rest. it is overwhelming. big hugs.

Emily said...

In answer to the questions you asked at the end....yes, yes, yes, yes!
Yes, people abuse the system. They will answer for it sooner or later. Only thing we can do is report it if we see it.
The fact that you are worrying and hesistant to accept assistance just goes to show YOU ARE exactly the ones who deserve it.
We have medical assistance for Jordyn and I don't feel ONE bit guilty using it. I never have. We have gotten life changing equipment that we never could have gotten ourselves. I cannot tell you how much it eases my stress, not worrying about medical bills.
I don't know how much money you make, but extremely shocked you are questioning getting the communication device. Maybe diapers, etc aren't a big deal to pay for. But a communication device that could be life changing? And a special needs stroller? I would be filling out that paperwork so fast.
I hope this hasn't been to forward... I just have a strong opinion about it! haha You pay taxes. You KNOW you aren't going to abuse or take advantage of the system. I just feel SO blessed that the government even has a program that helps us so much. Isn't that just incredible? What a relief in our lives.... now we can stop worrying about money/medical bills and start worrying about caring for our children and taking care of them in the absolute BEST way they deserve. And those programs make that possible!

Porters said...

The fact that you are asking yourself if you would be taking advantage of the system is the first clue that you would NOT be. Those that really do advantage do not ask, do not think, they just do. I promise, I work with many many many who take advantage of many systems and this sounds like the farthest example FROM. :)