Georgia / Parenting / Tuberous Sclerosis

I agree to jump through your hoops. Can’t you just agree to just hold them steady?

I had the most ridiculous morning Friday thanks to the Georgia Department of Human Services. I am unconvinced they know the definition of either “human” or “service.”

It started Thursday evening. I received an automated phone call from them informing me that they had tried to mail me something on behalf of Connor, but it had been returned to them due to an incorrect address. Since it must relate to one of the programs Connor has qualified for, either Katie Beckett or HIPP, this concerns me. We’ve changed our address with them, but whatever, right? I was given two numbers to call the next day — as it was after seven (thanks for making me worry when it’s too late to do anything) — a local and a toll free.

Friday morning around 8:30 I attempt to call the local number. Call fails, so I call the toll free number. I spend seven minutes, according to my phone log, trying to navigate the automated system to get a person. I end up trapped in a dead end when I make a selection for which I don’t have the information to input that they want. So I hang up and call again. I try hitting anything to get a person. After I slam my phone down still connected, Chris takes it and successfully gets a person on the line who informs him that she can see us in the system, but she doesn’t know what was mailed. She gives us another number to call.

I call it. Then I spend almost 45 MINUTES on hold. In the time I wait, I give Connor breakfast, get dressed and carry my phone and Connor’s KB Medicaid card around the house with me in case they need his Medicaid number. When she finally picks up, I realize I’ve left the card somewhere and I have no idea where. She’s asking for his social or some other number. I am already about to lose it, so I’m shrieking, “Shit! I had it the whole 45 minutes I was on hold and now it’s gone!”

She keeps telling me to give her some other identification number I don’t have, so I run up to Chris to get Connor’s social security number that I so desperately need to memorize, but agencies like this have left no room in my brain to keep it, and I give it to her. She keeps asking me for some other number and I tell her I don’t know what she’s talking about. At this point Chris takes the phone and goes off. He basically has to tell her to shut up and listen and use the social security number. A total of 49 minutes was spent only to be told, again, that she can’t see what was mailed to us either. Call your local agency.

By now, I’m late taking Connor to music therapy and about to have an angry, ugly cry meltdown because my morning has been ruined, my happy baby trying to get my attention to no avail, all so I can return a phone call to an inept agency when I don’t even know if it actually matters or is important.

Well, we’ve been getting our monthly HIPP checks with no issue. And I sent in all the paperwork for Connor’s Katie Beckett renewal last week. KB is the only thing up in the air, so in order to save my sanity, Chris makes the call to our local agency and to Connor’s caseworker leaving a voicemail to find out if she has received the paperwork and if she knows what was returned to them to trigger this auto call. Well over an hour spent returning a phone call and I still don’t know what the problem is.

This is after the recent ordeal of renewing Connor’s Katie Beckett Medicaid. KB is a fantastic program. It provides a secondary insurance to kids who have private primary insurance and major medical issues, but it is not based on income. It helps cover costs that are not covered by our primary insurance. We first applied last year with the help of Connor’s early intervention caseworker. The application is a lot of work and a lot of information to gather, but worth the end result. Then the letter came that it was time to renew. We were directed to fill out an online application. We were naive and new to the game so we did it. Several weeks later, we received a denial stating we hadn’t submitted all the requested information. I quickly garnered in FB support groups that 1. it’s better to have them send you the full paperwork packet all together — the online form consistently spells trouble as it’s not really intended for KB recipients, and 2. even if I do fill out the online form, I should then receive a packet asking for additional information, doctor forms, and — naturally — a lot of the same information already asked online. We never received the packet. Just a rejection. I started trying to call for help. You know what you get? A lot of voicemail boxes. Boxes that are full. The denial letter offered me the opportunity for a hearing — you know, in a court. With judges and lawyers. I don’t pay anything out of pocket, except as a taxpayer. Like you. All to get a benefit for which my son no doubt qualifies. I learned in the support groups that this is very common and that you pretty much always get it on appeal at that pesky additional cost to the taxpayers. Then I speak with someone else who advises getting in touch with Connor’s caseworker and seeing if she’ll just give me an extension. Once I finally get the VM when it’s not full, I finally can leave a message which results in the needed extension. We currently await the results of our completed renewal application.

This renewal will happen every year even though Connor has an incurable condition. That’s how it is for everyone.

I’ve been hesitant to be critical of programs that I am so grateful for. We’ve been very lucky in Georgia. I read terrible stories in my support groups of people in other states trying to get their children into the early intervention programs and being wait-listed (which defeats the entire purpose of EARLY intervention), some states  have Katie Beckett wait lists so long the kids age out before receiving benefits and HIPP — which is a huge financial support for Connor — isn’t available everywhere. He receives KB and HIPP because our family has too much income for him to qualify for social security disability.

I agree to jump through your hoops. Can’t you just agree to hold them steady?

I have filled out your paperwork and gathered your very specific requirements of what kind of specialists must provide evaluations of my son (ironically, this leads to you considering an evaluation from someone who saw him once to a much higher value than anything submitted by his regular doctors and therapists that see him all the time). I have made the drives back and forth to the office when my carefully organized packet still turned out to be lacking something.

If we screw up, the penalty for our kids is huge. That’s why we parents jump these hoops. That’s why we give each other tips in support groups. That’s why countless parents lose sleep every year when KB and HIPP renewal rolls around.

Yet the hoops keep moving and changing. Full voice mails, directions to call numbers where no one can help, paperwork not being sent, paperwork being sent minus essential forms, required forms not being available online, people having to go to hearings when if the process was clear and streamlined, it wouldn’t be necessary. You have made it impossible to return a simple phone call.

How much taxpayer money is wasted on these inadequacies? I’ve heard more people are losing benefits as the belts tighten. Maybe if this system worked, more money could be spent helping people. I’m more than happy to submit the proof you need, but perhaps we can agree that an annual renewal for kids who have incurable conditions is excessive? How much time and paper and manpower could be saved on that alone?

Truly, Georgia, I appreciate these programs. I don’t feel entitled. I feel grateful. But special needs parents have to reserve our energy and sanity for more important things.

I need my energy to stay positive on the days when Connor has a setback with his seizure control and wakes up with a violent tonic clonic.

I need my energy for being patient while waiting for my 2-year-old to say his first word.

I need my energy for carrying my 2-year-old who WILL walk…but isn’t YET.

I need my energy for mixing meds twice a day.

I need my energy to fight a government that thinks my child’s access to medical cannabis should be based on his zip code.

I need my energy to keep track of 4- 7 therapy appointments a week.

I need my energy to coordinate an MRI and doctor’s appointment in a very narrow window of when we will be in Boston for a TSC study and when his doctor is actually available.

I need my energy to make multiple follow up calls to hospitals and doctors to remind them they should have billed secondary or that they never sent a form I asked for three times already.

I need my energy to trouble shoot my son’s medical diet for seizures and figure out why it isn’t working as well now as it was in the beginning, and also to force him to eat when he doesn’t want to, because not eating = more seizures.

 

You see, I simply don’t have anything left for you. I will fill out your forms and collect your documents. I will meet your deadlines. I will provide you whatever evidence you need to believe that my son has an incurable genetic condition that causes seizures and developmental delay. But that’s all I have to give. The energy supply is gone. I can’t sit slumped in the waiting room of music therapy, drained from trying to return a phone call.

Please, please stop moving the hoop.

 

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2 thoughts on “I agree to jump through your hoops. Can’t you just agree to just hold them steady?

  1. Oh my God, do I know exactly how you feel! It will be a life time of this stress, I’m afraid my friend! Support groups are where it’s at!

  2. I do understand every single word you’re saying.. lots and lots of money is being lost because of an excessive and unreasonable steps.. and then school stops the PT because it’s UNSAFE due to the child attaxic gait like what happened to my daughter.. who is taking 4 anti seizure meds!.. and ST stopped because of NO PROGRESS.. and so forth.. May God keeps our sanity!
    Sarah

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