Circle of Friends Clinic Resources

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Happy Monday, or should I say happy Monday, Medical Mom of NICU Day.
I'm Tanisha, a medical mom of NICU to a kidney warrior and cancer fighter,
plus a pandemic mom of two under two.
Welcome to Medical Moms of NICU podcast where we help NICU moms,
life after NICU moms, and NICU moms of medically complex miracles worldwide

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navigate the medical system with ease by sharing sharing medical mom tips,
NICU resources, and medical advice from medical experts.
We thank you for listening every Monday to each episode, whether you are in
the hospital making powerful life-changing decisions for your miracle to thrive,
or you're at home adjusting to the round-the-clock medical care your miracle

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requires after NICU discharge.
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milestones you are proud of.
Happy Monday, or should I say happy Medical Mom of NICU Day.
I'm Tanisha Burke-Wormley. Welcome to Medical Moms with Niki,
where we help you navigate the medical system with ease by sharing medical mom
tips, Niki resources, and medical advice from medical experts.
Today, I wanted to entitle this podcast Circle of Friends.

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Today, my oldest son, my medically complex miracle, Jaleel, who fought cancer,
kidney warrior, and newly autistic awesome child, is going to Circle of Friends
appointment in Arkansas.
And Circle of Friends is for complex care children.
They are a beautiful blessing to special needs families.

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The reason why I want to bring them into this podcast is because over the years,
Jahlil has Circle of Friends involved in his care,
and they have also given us, as medical parents, many resources to navigate
the medical system with ease.
Not only are they there to

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follow up with your child's progress after a hospital admission
or to make sure that you have the supplies that
you need to better care give for your child but they also want to make sure
that you as parents have our guardians have what you need to thrive and so when
i look back over to the time when we started our journey with circle of friends,

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And that started in 2018, Jalil's six now, he just turned six this month,
but 2018, so I would say that would be almost five years of relationship.
Then initially when we came to Circle of Friends, I was coming from a caregiving standpoint.

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My husband being the sole earner of our family was looking for savings in healthcare insurance.
And so in Arkansas, they have an ARHIP program will cover some of the premium
that normally employees pay for their families to have insurance.
They will give you a check back of reimbursement.

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And even though I'm talking from an Arkansas standpoint, some of these programs
are still in place throughout the states. You just have to ask your social worker.
They may be called different. They may run differently, but it doesn't hurt
to check. And so ARHIP is a program to help save on health insurance.
And so we learned about that program and that program has blessed my husband

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because he has to pay so hefty of a premium having a family of dependents of
four, including myself.
Myself, we have three children all underneath each other, a six-year-old,
a three-year-old, and a two-year-old.
And so it gets very pricey. And so Circle of Friends started out the gate with

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a resource that could help save our family.
And this is a complex care clinic.
Secondly, Circle of Friends also helps to see if your child needs any further services.
So Jaleel is developmentally delayed based on his chronic kidney disease.
And he spent almost six months in the NICU alone and had several hospitalizations

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after that, multiple procedures, over 20 plus procedures.
And so he naturally needed some therapies.
And so OTPT and speech, the doctor was able to recommend those services to him
so that he can get those as soon as possible once he's well enough to do that.
And so they help to activate services like OT, PT, and speech or ABA services.

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Another thing that Circle Friends has done for our family is to start a prescription
for incontinent supplies.
Jalil is not potty trained yet because of his developmental delay and then being
newly autism, autistic diagnosis, it's really harder for him to grasp that just yet.

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So they put in a referral for him to get incontinent supplies.
Greta, she was a sweet, sweet, sweet nurse of Jalil and has been taking care
of him over the years. She put in a request,
And she got it over to the doctor to signature and then send it over to the medical company.

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And then shortly after that, within probably like two weeks, we got new diapers.
And now I want to shout out Camille Joy Robinson, who's also a beautiful autistic mom.
She has been advocating for her son of six years.
And she's having a Moments of Joy Fest in Houston, Texas this July.
So I want to invite all my listeners to support that.

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And you can find out more on mojfest.com and buy your tickets as soon as possible
and plan for a beautiful celebration.
We had a beautiful celebration in Denver, Colorado, but she was the one who
really talked about incontinent supplies and how to start with that process. us.
But every state is different. Again, I saw her reel.

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I was like, okay, well, Jalil's not potty trained.
Let me see if I can talk to Complex Care, Circle of Friends and see if we can
get a prescription for it.
Shortly after I talked to them about that, we had new diapers and it was beautiful
and they sent Chuck Pats too.
So we didn't have to worry about paying for diapers based on him not being potty

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trained and developmentally delayed.
And so that's another reason why I like complex care.
Another thing that I like about complex care is the fact that if you're having
any issues financially, they will help you with programs that can alleviate
your load and make it better.

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So for us, it's been a journey just with the new autism diagnosis.
And so they've been trying to figure out a plan for Jaleel.
And I had started a Medicaid waiver process with them.
And I had to do this form for developmental disabilities.

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And it was a long form, but the social worker helped me with that form.
And I got through that process.
And Jalil was on the waiver list a couple of years ago and he's starting to get off the waiver list.
And so Circle of Friends can help you with a Medicaid waiver and Medicaid waiver.
It is a program that can help additional services that are not covered by insurance,

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like aquatic therapy and other services that your child needs to thrive.
It's covered for the rest of their life. And so if you can get that going,
it may take a while from state to state, but I would highly recommend it.
I also found that out through Camille Joy on Clubhouse. house.
She hosted the Real Moms Club and talked to another mom that had went through

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that program and started shouting it out.
So it's the beautiful thing of networking.
When you can network with other special needs parents, you start to share resources
and be able to engage with each other and see how you can help each other alleviate
some of the lows that you have as special needs needs parents.
So I would definitely be open to support, be open to support.

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And then I would also say it's just the most recent is that we were able to
get a referral for a cubby bed and it's a special needs bed.
And you can find out more on cubbybeds.com. But cubby is a specialized bed for
For children that are developmental delay, severely developmental delay,

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mostly have sensory issues,
autism, et cetera.
And it is a safe bed that the child can grow into, breathable bed,
and have little barriers where the child are not able to harm themselves,
but have fun and sleep throughout the night.

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To have a sensor camera and speaker that you can monitor your child with.
And I found out about this resource when I was in Denver, Colorado,
speaking at Moments of Joy Fest in 2023.
And one of my friends, my sister friends from another community in Blam,
her daughter worked for CubbyBeds.
And so she sent me some information for me to give out to my speaking engagement

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to to share with other families as well as myself.
And then when I came back shortly after, I went through the process with Circle of Friends.
They sent a referral over for Jalil. Now, mind you, I think the Medicaid waiver helps with that.
Having a care coordinator for Jalil's insurance and talking through that process with them.

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The approval process. And then Jalil just had a huge medical history that was
constantly documented about all his delays and medical complexities.
And so I think that helped with the approval process.
And then we also had Medicaid, Medicare, because he has end-stage renal disease, stage five.
So we were fully covered. So they sent it over to the Empower Health Company

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and Empower Health helped approved it.
Now, our private insurance didn't approve it, but Empower Health did approve it.
So these are some of the reasons why I love having a complex care team,
because they go above and beyond the child.
They look and see how they can help the caregiver, the parent,
the guardian, and navigating the medical system with ease by having financial resources.

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Ways of adaptable equipment to help that child thrive, therapies,
and just saving on insurance.
And so this is the reason why I wanted to shout them out today as we get ready
for our appointment for two o'clock.
I love Circle of Friends because there's so many gateways of resources that

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I have recently been blessed with.
And I wanted to share that on this platform and Medical Moms NICU,
you, hoping that you will tap into your complex care team and see if they have
similar programs that I mentioned from incontinent supply referrals to saving
on insurance like ARHIP to qualifying for a cubby bed or any special adaptable

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equipment to activating therapies.
These are all great resources to help in the special needs journey.
And so I hope this blesses you today.
And remember that you're more than capable of handling your child's medical complex care.
Until the next episode, please take care of yourself. I'm Tanisha.