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Help me!!! You can be screaming at the top of your lungs and still feel like no one is listening. You have a job, you have private insurance, and yet you still find yourself struggling to pay your bills because you literally have to choose between what gets paid and what doesn’t just so you can get your child the assistance they need.
Sound all too familiar? Getting shut down for services because you make money like we’re supposed to as grown adults? Let me tell you, I’ve been there. It’s as frustrating as showing up to your 3rd doctor’s appointment/therapy session of the day and having to wait 25 minutes after your scheduled appointment time for an appointment you showed up 15 minutes early for per office instructions.
I promise, I’m not bitter. I’m frustrated from doing everything the right way, and because I’m doing it the right way my daughter doesn’t get everything that she needs to thrive. I’m frustrated because the way the government operates it encourages good people to get divorced, quit their jobs and take benefits because if they didn’t do these things, they’d be working and broke and still not getting everything they need.
It’s dumbfounding. Completely and utterly dumbfounding.
I’m here to offer some alternatives to divorcing your significant other of whom you love dearly. There are options out there, in places that those new to this world may not have thought of, mainly because you’re focusing on getting that beautiful child of yours what they need.
Pediatrician’s Office – The Amazing Care Coordinator
Start with your pediatrician’s office. Our pediatrician’s practice is part of a larger health care system, which means more resources. We have a truly amazing care coordinator who checks up on us regularly to make sure Ri has everything she needs. She listens to us, asks us questions and works directly with insurance when needed. And when insurance fails us, she helps us find alternatives.
Our care coordinator has a foundation that they can ask to provide things, as in our case a wheelchair, for children with special needs. We fought with insurance for over a year. A year!!! We kept going back and forth between the doctor’s office and insurance, would get denied and told to tweak the prescription, we’d do that and would get denied again. Our care coordinator got involved and said we’re not going to get approved for what she needs so let’s go through the foundation instead of getting something that will sort of suffice. That’s what we did, and we have a pretty amazing wheelchair.
This wonderful human has been an amazing asset to have in our corner. We’re currently in the process of getting diapers taken care of, looking into a more appropriate bed (My little girl is still in a crib and it’s so difficult to get her in and out), among other things.
Also along this line, check with the specialists you also have, as well as any therapists. A little secret: You may not have been given the choice to parent a child with special needs, but these extraordinary people have chosen to be part of their lives. Meaning: They want to help!
School-Aged Child? Check with your School
Riley is in the Pre-K ESE program in the medically fragile classroom at an awesome school. She has an incredible teacher with equally amazing staff in the room. The teacher and staff give us daily updates on what Riley’s doing in the class as well as “homework” to work on with her at home to continue what she’s learning in the classroom setting. They’ve helped us identify tools that they use in the classroom and where to find some for use at home.
The school also has a social worker. Don’t be scared of the title. I have to be honest, I was a little terrified the first time I got a call from the social worker and was told that we weren’t providing enough services for our daughter. There was some miscommunication that occurred, and we were being told it would be in Riley’s best interest to add additional therapy services outside the classroom setting.
Part of the role of the social worker is to help find services. This can be part of the IEP, but it could be to help find services when private insurance just won’t cut it. Talk to your child’s teacher, and they should be either to a) give you information, or b) point you in the right direction.
If your child is under the age of 3, they most likely will qualify for services (regardless of income) through the state. Here in Florida, we have a program called Early Steps, which Riley took advantage of and received Speech, OT and PT. Easter Seals funds the program so that may be a good place to start or search for your state’s early intervention program.
Support Groups
Support groups are a fantastic resource to find more focus on what type of disability or disabilities your child may have. For instance, I’m a member of several Facebook groups. These groups are generally closed groups, meaning that as long as none of your friends are members, your participation in the group isn’t public and your activity isn’t shared on your page.
It’s always beneficial to find like-minded people who have gone through, are going through or may go through in the future, similar situations as your own. I don’t know what I would do without my online groups to help support each other on hydrocephalus and epilepsy.
These people who are more veteran may be able to provide guidance on resources, or grants, fundraising ideas to assist with medical costs, and more. Don’t be afraid to participate in the conversation, ask questions, provide your own experiences to others. It’s really a great environment.
There are many local resources, as well. Remember I spoke early of Early Steps? That’s not the only one out there. Need help in locating either in-person support groups or online? Brenda over at ABC Law Centers reached out to us here at Unbreakable Sara and shared a truly wonderful database of resources. This database is easily searchable and categorized for easy browsing. I’d highly suggest checking it out and perusing. I kid you not, I spent an hour on it the other night and was amazed at the number of support groups compiled. You will not be disappointed.
No More Screaming for Help!
Ok, so no more screaming for help may be a bit of an overstatement. I’ve found that I’m always looking for more resources, ways to help my daughter that we haven’t already thought about. It’s helpful to know that you’re not alone in the endless research and that there are others out there to help.
For those of you who don’t know me (and if you haven’t checked it out yet, head on over to my about page to read more), I’m and GIS Analyst. In most world’s GIS means geographic information system (or science). Some people like to joke with us geo-nerds and call is “Google it, Stupid.” Now I won’t call you stupid and I won’t tell you to google it, there’s a lot of nonsense out there, but there’s also a lot of good information. Google at your own risk. Make sure you check out reputable pages (think: ending in .org) and verify information with your doctor, always.
Until next time my good friends. Have a good night/day!
