In this mini-episode, Jessica discusses paying for treatments for the medical conditions of her children and the lack of public/government funding to assist with the incredible expense. She talks about how expensive it can be, even with insurance, and reflects on applying for things such as SSDI, to the DDA, DSS, LISS, and the autism waiver.
Jessica: This is Jessica,
Lewis: and this is Lewis.
Jessica: We have a preschooler and a toddler. Our children are a different kind of perfect. This is a show about surviving Parenthood throughout raising children with special needs while keeping ourselves and our sanity intact. This is FUBAR surviving Parenthood. Special needs kids.
Jessica: Hey everyone. Welcome to FUBAR surviving Parenthood with special needs kids. This is your host, Jessica. I’m without Louis today because I wanted to record a mini episode brought on by a negative experience that I had this morning. First, I wanted to share a couple of really cute stories that happened today.
So we were at a friend’s house for a play date. Our actually our first play date this past weekend, and they had a bad day. So my husband went and he showed Benji how to use a bad day, and today Benji was rubbing his butt all around this table and saying, this washes my butt when my pants make my butt itchy.
So he thought the table was a day. He also was learning about trees from. Lewis and they were learning about pine trees and how they stay green throughout the winter. And Benji said, pine tree stay green all night. So it was, it was really cute. He’s still trying to learn the concept of like yesterday, today, just like time in general.
So it was, it was very cute. Today I want to talk about a huge problem facing many parents. So children with special needs, finances to pay for medical expenses. I went to apply for medical assistance for Benji in order to obtain the, literally any services from the DDA, but we were denied. This was our last possible option to assist with financing the health care of our children.
Look, I went to graduate school for eight years plus two years of residency plus boards to get the job that I have and to help others, which is what I wanted to do. I was hoping to also create a good life for myself and my kids. I wanted to give everything I could to my kids. However, I never expected student loans to take over my life, and I certainly never expected both children have special needs.
I had no clue going in with kids that having kids with special needs would take up so much of my time and I never could have imagined how much money it would cost. I had what I thought was good insurance. And it is. It covers the majority of what we do. Still, we have copays, and when you look at everything that we’re doing, it adds up to almost $2,000 a month.
ABA cost $1,000 a month and therapy is cost $960 a month, not including medications or my doctor’s appointments for my chronic health conditions. This is with insurance. On top of that and having outrageous student loan debt from eight years of graduate school, we moved about a year ago for our jobs, so we had to spend money on the move, and I had a baby three months in after we moved.
So since I was new. I wasn’t eligible for FMLA and was still on new employee probation from my job. I only had a week of leave accrued. I had no short term or longterm disability, and my baby had extra needs, so I needed to be off as long as I could in order to take care of him so he could survive.
I took 10 weeks total, not even the max of FMLA where I eligible, but all but one week was unpaid. My husband works hourly and also needs to take off to help with appointments for our kids. So that cuts the money that we could make by a lot. And our children get sick a lot with respiratory issues, so they spend a lot of time home from school.
We have tried everything to try to help cover expenses, but we aren’t eligible for it. Anything. I’ve scoured the internet for grants, but since I make too much, which still isn’t enough to cover medical expenses for my children, I don’t qualify for any of them. I was told to apply for SSI for Benji, but since he’s under 21 they have to look at our income, and since I make too much, we don’t qualify.
I applied to the DDA for services like lists and respite and everything else. Really anything else? In order to qualify for further services, you have to apply for it and be approved for medical assistance. I went today and was denied, so the minimal services that I thought we would have covered or not covered social services denied us to dude income.
Everything was tonight due to income. We tried Pathfinders, we tried the Autism Society, we tried the Autism Speaks, and they were helpful in giving us resources, but it didn’t get us anywhere. I found out that we might be eligible for respite through DSS. However, we were using the old pediatrician at the time when we applied.
And though they promised many times that they’d sent in the forms they never did. And now since so much time has passed, we’re no longer eligible. I found one grant that might help us cover a few months of copays. I spent hours on the phone for interviews for the grant and a lot of time filling out the paperwork.
However, the pediatrician needed to fill out forms to after running around in circles with them for weeks. They thrice promise that they’d filled out. And sent in the paperwork. However, we later found out they never did, and now we’re no longer eligible. We can no longer afford to live in the home that we’re renting because of these medical expenses, but we can’t afford to move.
My husband and I both have chronic illnesses and can’t move things by ourselves. We have no friends or family to help. And we certainly have no funds to hire movers to pack and move us, and we have no down payment for a house or a deposit for an apartment. And because of Benji’s autism, we need space for him to run around.
Not a lot, but some. Otherwise he’ll hurt himself or us. But we have no other options. We’ve used our life savings trying to care for these children in the last year, and now it’s gone. I don’t know what to do. It’s not like we have time to get a second job. We take off too much time from our first jobs in order to make sure the children have the care they need.
And then we spend all the time before and after work caring for them and doing their therapies and due to safety issues, both of us are needed. It’s not like we’re spending money frivolously. We can’t even afford some therapy or sensory products that Benji needs. We went on one vacation in six years, which was financed by my parents.
It was a complete disaster ending in an ER visit for Benji. Stay tuned for details on that trip. In a future episode, we don’t go to many places other than fares. What’s your relatively inexpensive? We almost never eat out. We don’t buy expensive food. We buy clothes at Goodwill or thrift stores and rarely buy any.
Anyway. I get my haircut at Haircuttery twice a year. Even though I worked so hard to give my kids a good life and went to school forever for it, I can’t afford to give them anywhere close to the life I wanted to give them. We may never afford a vacation and we probably will never afford to buy a house.
When our 14 year old and 12 year old cars go, we’re screwed. Let alone even contemplating contributing to a college fund and then there’d be told with all of this, we aren’t eligible for any assistance to help our children with special needs, not even for respite, which we desperately need. We’ve had three dates in as many years.
I barely get to spend any time with my husband anymore. We haven’t celebrated our anniversary since Benji was born two years after we got married and don’t even get me started on the autism waiver. Everyone keeps saying that we’ll solve all our problems while in the state in which we live. There’s an eight year waiting list, so it’s nice to know that when Benji’s 11 we might be in better shape, but that’s eight years from now.
People have said we should homeschool. It takes for adults to be in the home with us at night to keep both children’s safe. How would one person homeschool both children? It’s not safe. So I’m stuck, guys. I don’t know what to do. I don’t know how people do this. I’m damned if I do and I’m damned if I don’t.
There aren’t any options for us. I’ve worked my whole life and now I’m stuck. I just don’t get the society. We already have it so hard. Women are expected to do most of the childcare, child rearing end mental load of parenting. There’s mom shaming and everyone is all up in our business. As long as they can make the decisions.
We can’t make any decisions for ourselves. We’re shamed for nursing in public, but also shamed for formula feeding. We’re shamed for everything we do regarding rearing our child, whether it’s working and sending our children to school or staying home and caring for them. There’s minimal if any maternity leave, and those of us who were lucky enough to get it usually get no pay.
We just get the time, which isn’t enough time anyway. Some of the European countries get up to two years of paid leave. We get nothing. We’re shamed for not having children, but then were shamed. If we do have children and they have special needs, it’s our fault. Mothers especially, there’s not enough adequate assistance to help those children.
I’m going to write my councilmen and the governor’s office about this issue to see what they propose. Please feel free to do the same. This is a huge issue and one that’s not getting any attention because no one wants to think about it. That being said, Lewis and I are going to push on. We’re going to still look for resources.
We’re going to branch out, ask for help, keep applying for grants, and we’ll be okay. We’re going to find some way to make it somehow. Some way we’re going to do this. It’s going to be tough, but we’re going to make it. Thanks everyone for listening to this rant. I felt it was really important to get this message out.
Until next time, this is FUBAR surviving Parenthood with special needs kids. Well, that’s it for our show. To find out more about the show, please go to http://www.fubarpod.com check us out on Facebook with our FUBAR surviving Parenthood with special needs kids group. And on Twitter @FUBARpod. If you like our show, please click on subscribe and help us out by giving us five stars on iTunes or wherever you find our podcasts and leave us a review so other like-minded parents can find out what you like about us and discover their community in which to survive and rock.
See you next time on FUBAR: Surviving Parenthood With special needs Kids.
Links: Some of these links are specific to the state in which we live. However, you can google to find the most appropriate program for your state.
Developmental Disabilities Administration (DDA)– There is one for each state.
Department of Social Services (DSS)
Autism Waiver – Maryland
Family and Medical Leave Act (FMLA)
Social Security Disability Income (SSDI)
Low Intensity Support Services (LISS)
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Show Music: Lion Roar: Lion Roar by Iwan Gabovitch under CC-BY 3.0 License (www.freesound.org)
Intro Outro: Intro Outro 2 by Mattias “MATTIX” Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Outro: Hi Daddy by daveincamas under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2019 Jessica and Lewis Temple