The week before DSPD came to our home to discuss Parker getting services through Medicaid, I was a total wreck.
The night before our meeting I stayed up and cleaned every crook and cranny of my home. The next morning I dressed with care, bathed Parker and put him in his cutest outfit.
I worried that the caseworker coming to give us the forms to fill out wouldn’t think I was a good enough Mother for my son.
I worried that if my house wasn’t clean enough or Parker dressed well enough the case worker would be concerned about my ability to provide a stimulating and loving environment for him.
And that they then would want to take him away from me.
Hey. It had been a rough few months that included a child life flighted to our children’s hospital, an emergency colostomy, and several weeks in the NICU. I was living off of Dr. Pepper and left over hormones.
I was naive. And apparently living in La La land.
Because we would have had a better chance of receiving services through DSPD if the case worker had been forced to crunch her way through a few cockroaches on the way to our kitchen table, and then found a long abandoned pile of dirty diapers in the corner next to her.
As a matter of fact, as the case worker left, her words to me included, “Now if one of your teenagers gets pregnant, or starts using drugs, call me.” We could for sure get your name on the top of the list then.”
Dad has a job? Mom stays up all night trying to make sure her family has clean underwear? Teach your children right from wrong? Don’t drink or do drugs?
Well then my friend, you are on your own. And good luck with that.
We couldn’t even qualify for WIC for help with Parker’s formula. The formula that our insurance does not cover.
Even though after paying out of pocket for medical needs brought us down to qualifying levels for WIC and other government services, we were turned down time and time again.
Yet this same government didn’t even ask for proof of citizenship of the thousands of illegal immigrants that use these programs each year.
Those here illegally could receive help from my own government, but my son could not.
And that folks is how it works. At least in my state.
Now, please don’t think I would ever deny a child food or health care. And as a parent I understand the desire of another parent to see that their child is well fed and has access to proper medical care.
But it would be nice if my child could have received a few of these benefits too.
Two of the issues I’ll be watching closely this election are illegal immigration and health care.
Because I’d like to see things in my state work a whole lot better.
Tammy and Parker also hang out at their other blog, Praying For Parker
Tammy, email me privately and let me know what state you are in. I have done a lot of work with Medicaid waivers, and have even won a lawsuit against my state to obtain benefits they initially denied. I might be able to offer some other strategies.
Deborah
Amen to that!
We need to take care of our own citizens first. This is just not right. I want to help people who need help too, but it is not fair that you were denied. I am praying that Deborah from comment #1 can help you!!!
You know, Tammy, yours is the case I bring up most often when I’m trying to explain to people why the system doesn’t work. It’s not just your state, it’s many states, and it’s frustrating beyond belief. We’ll be carefully evaluating our candidates – thanks for encouraging everyone to do the same.
Applause, Tammy!
Your tax dollars are not intended to help you based on what you contribute or what you need. The spin is to help the neediest, and then a large group of people spend a lot of the money devising regulations and implementing the regulations and making sure the regulations are followed.
I’ve read Deborah’s blog, and encourage you to follow-up with her. She knows whereof she speaks. (Funny how old sayings look funny when your write them.)
I’ve been thinking I need to post again on issues related to healthcare insurance. You have given me a spark to do that.
In the meantime, my post on Memorial Day, “The Meaning of Free” will give you an idea of what I think. Other posts can found by clicking ‘insurance’ on my category cloud.
I also advise you to write, as close to quoting as you can, everything the case worker told you, document her name and all subsequent phone calls with the agency.
For whatever strength you have after taking care of your family you use to work the system toward better care for the citizens, we pray you have much. And we thank you.
I’m a long term lurker over at Parker’s blog. I think I’ve commented once or maybe twice long ago but after awhile I would get so frustrated with everything that you had to go through it would break my heart. There was even a time or two were I actually cried after reading a post because of how insensitive the insurance company was being. If I had extra money I would honestly give it all but sadly even we are having trouble making normal ends meet and our family is extremely small. So much so that our roommate and owner of the house we rent half of had to apply for a modification to his mortgage because he couldn’t seem to get caught up on a past due month or two. After all expenses paid he had about 100 dollars left over for food. When he called the mortgage company to ask for help (before, mind you, it went into default) he was told that the only way he would have qualified was if he had in fact been in way over his head but because he was bobbing slightly below the surface of the water there wasn’t anything they could do. That doesn’t make sense to me? Why won’t companies help people who are trying to help themselves? They would rather you fall months and months behind then give you a chance to catch up.
The same goes for the government. You are doing your best to survive and personally as a tax paying citizen I think you should be rewarded for that. People choose to do drugs and in the words of your case worker can get help for that. You didn’t choose for Parker to be so sick so why are you being denied the help that drug users are practically being promoted to use. “We need a few good coc-ine users like you! – sign up here. Thanks, US Government”
I’m sorry. Guess I stepped up on a soap box but I am overwhelmed by every obstacle parents of special needs kids have to overcome. If you aren’t battling issues with teachers discounting students with special needs or other children bullying them, you are dealing with the mounting cost of medical and / or therapy bills. I think it’s time to get out there and do some research. With the presidential campaign coming up I need to really dig deep and find out the specifics regarding their outlook on special needs of all those running.
Tammy – I understand your plight and know what you are going through.
Just trying to get the basic of care is difficult and even when you have Medicaid is difficult. I find myself fighting every day for some type of service or extension of services. That is the battle I am currently having with Meidicaid and Part C for PT for my son who severely needs it!
I will continue to pray and hope that things get better for you and that something positive comes out of these elections because as they currently stand – I do not know who I am going to vote for – I cannot find a “lesser” of the 2 evils.
(if Parker receives SSI, then he AUTOMATICALLY qualifies for Medicaid, have you tried that route?)
Explore the Medicaid EPSDT program in your state. Every state has one, but most states do their best to conceal that fact. It is pretty open ended – i.e. guidelines are ‘looser’ than other medicaid programs. Battles CAN be won there.
Yep, fought many battles myself with the system as foster parent, process of adopting and adoptive parent of children with special needs. Been to court over a few issues and won…w/o an attorney which we could not afford.
Tammy, contact Deborah. I hope she knows something that you and I don’t in order to help Parker.
We have also been through the ringer and YES it pisses us off that you are correct in everything you say. How do we get it changed? Well I have said a few inappropriate things to those who deny us those coverages, “you can appeal ” they say. HA that doesnt do anything either. Families that are working day and night to do the right things for their families get the punishment, not those that live off the system. We could quite and do nothing and get much much more assistance than we do now….and probably drive better cars
hee hee. Sad though huh.
We received assistance for a short while, but when they decreased Gabi’s social security to $7 a month and then wanted me to take a day off of work to give them all the information they already have, I decided to let go of those $7. It would have costed me far more to keep the appointment.
And I can’t believe the gall of that woman to say that to you. It’s almost like they are encouraging teenage pregnancy and drug use. How did you keep from going for her neck??
I feel your pain. Hours at a time on the phone and we still don’t know if we even qualify. 3 sets of applications… 5 months… 5 hospitalizations… 3 kids with disabilities… and ???? Nothing. Contacted our Senator, might be a route for you to go as well.
I am in a very similar situation here in this state. I have spent so much time applying for various services (when I can find them). Yesterday we were informed that I make too much for my daughter to qualify for Social Security. I should call them back when (not if) I have another child. Still waiting on DSPD to review their documents.
Sometimes I think my daughter would benefit if I quit my job and have no income or insurance. How frustrating.
Seriously? That’s just crazy, and I’m appalled for you! Addison has our insurance as her primary, and then is on the Medicaid Waiver for her secondary. Some states call it by different names, but it’s my understanding that every state has them. There may be a very long waiting list (ours is like 10 years for Developmentally Disabled, so she’s currently on the Aged & Disabled and automatically qualifies due to the g-tube. Trach and vent are also automatic I believe.) The key to the Waiver is that it WAIVES the parental income. The child can only have so much assets in his/her name. It took us about 4 months of paperwork, and we have to meet with a caseworker every quarter, but it has been such a blessing. We have excellent insurance, but this takes care of the copays and deductibles for her. Which is a lot, as you well know.
That caseworker’s statement as she left was bordering on something I’d report!
After a certain age, you can have the formula run as a prescription and insurance should be billed through your durable medical. Addison’s on Pediasure, and it all goes through insurance.
I hope you can find a way to get into the system. It’s a travesty that those supports are not already in place for Parker!
I am in Los Angeles and know what you mean about illegals getting services where we the parents of children with special needs have to go through hoops to even find out about these programs, etc.
Good luck and I hope this gets rectified. I remember when my son turned 5 and we lost WIC. I wanted to find a way to get WIC extended for those with disabilities, something similar to how IEP kids can go to school until they are 22.
Hugs and prayers Tammy!
I’m so sorry for your troubles. One thing I would encourage you to do is file a complaint (or whatever it is called in your state) about the denial for Medicaid.
Our Medicaid hasn’t gone through yet, but I think I am lucky to live in the state where I do because they have a nice big loophole for us. However, that also means that I probably will never be able to move.
Good luck. Don’t give up.
I lived in the same state you are referring to and recently ( a year and a half ago) moved to a neighboring state where we have made MUCH more money and easily got state insurance along with respite and other services. I have emailed you several times about other options and I am sorry that you have still not gotten better care. We tried to file for bankruptcy after our violent shove into the special needs world. I to hope that we all can get what we need. What is frustrating to me… those who purposely don’t work to keep their “free” health care while those who do all they can to make it work .
Nancy
Visit us at Http://micropreemie-miracle.blogspot.com
Nancy,
I remember you! I’m glad that you are faring so much better in your new state.
We are closer. But not quite there. I still have faith though.
The sad thing is that even if everything pans out tomorrow, we still have the mountain of already accumulated debt staring us in the face.
And I would so love for others not to have to follow in our experiences.