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Hosted by Erica Jolene with special guest Amanda Kaufman, MSW | Transcription HERE

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In this week’s episode, I am sharing the conversation I had with Amanda Kaufman, MSW, who previously worked closely with our family through an organization called Division of Specialized Care for Children (DSCC). Amanda does a really great job of explaining her role in DSCC and their mission to help assist families of children with special health care needs.

DSCC was one of the first organizations to step into our lives, they were some of the first social workers who came into our home and began helping us to navigate our new norm with a medically complex child. The beginning of this experience is actually very difficult as it is occurring during a time when you, as a parent, are still learning how to cope with the acceptance of the unexpected that comes with an complex diagnosis. DSCC has played a tremendous role in helping our family to thrive. Not only have they helped to provide the means that has allowed us care for our children at home rather than a hospital or an institution, but they have also supported us emotionally throughout this entire journey.

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Links related to this episode:

Home Health Nursing

Medically Fragile Technology Dependent Waiver

Maternal and Family Block Grant

Katie Beckett

Resource Booklet

Episode Transcription

Erica 00:16

Welcome back to Atypical Truth. I'm your host Erica Jolene. In this week's episode, I'm sharing the conversation I had with a social worker, Amanda Kaufman, who has previously worked closely with our family through an organization called Division of Specialized Care for Children. You will also hear me refer to it as DSCC.

Erica 00:41

Amanda does a really great job of explaining her role in DSCC and their mission to help assist families of children with special needs. DSCC was one of the first organizations to step into our lives. They were some of the first social workers who came into our home and really began helping us to navigate our new lives with a medically complex child.

Erica 01:04

The beginning of this experience was actually very difficult. It occurred during a time when I was still learning how to cope with the acceptance of the unexpected that came with this unknown diagnosis. DSCC has played a tremendous role in helping our family to thrive, really. Not only have they helped to provide the means for us to care for our children at home, rather than in a hospital or an institution; they've also supported us emotionally throughout every step of this journey. They are the people who we can guarantee to check in on us regularly, to tell us about a resource or a charity that might benefit our children, and the even goes so far as to send birthday cards to each of the kids - which I just can't express it enough how touching and heartwarming that singular gesture is.

Erica 02:01

So if you have a child with disabilities, special needs, or a complex medical condition, and you don't have an organization like DSCC in your life already, I would highly encourage you to search one out in your own state. As Amanda explains in the episode, every state should have one, it just may have a different title or name. I'll just go ahead and let you hear more about this program and their services directly from this source, my friend Amanda Kaufman.

Erica 02:38

Hi, Amanda, thank you for joining me today.

Amanda 02:40

Thanks for having me on today.

Erica 02:42

I'm excited to talk with you and learn just some more fun facts about you that I haven't had a chance to talk to you about - which is surprising because we do a lot of sharing when we finally do get together.

Amanda 02:54

I have found that to be true on all the families I work with.

Erica 02:58

Okay, well let's just jump right in then. What did you want to be when you were growing up?

Amanda 03:04

Well, up until third grade, I wanted to be an astronaut was actually what I wanted to be. And I distinctly remember in third grade, my third grade teacher, which I will not name because she's still, she is even one of my favorite teachers I still see are from time to time, but she told me I wasn't smart enough on math to become an astronaut. I was never gonna make an astronaut. And after that, I was like, "well, I guess I have to find something else to do." (laughter) I actually went to school for special education originally and I was really hard in special education. I loved working with the kids and everything else. But I don't know just the pit of my stomach was like this isn't what I wanted to do. So I switched to psychology when I was in college and I graduated with a psychology degree.

Erica 03:54

Awesome. Wow. Do you have a favorite book movie or your TV show? recommendation?

Amanda 04:00

Um, currently my favorite movie is probably Mr. Rogers Neighborhood with Tom Hanks.

Erica 04:05

I haven't seen that yet.

Amanda 04:07

So my God, Erica, it is life changing. You need to watch that movie. I'm

Erica 04:11

Putting up the top of my list.

Amanda 04:13

Yes. And I don't know if it's just because of the time I watched it. It just hit so many chords in my life that that was just what I needed to see. But yeah, it was excellent. He did a very good job portraying Mr. Rogers.

Erica 04:26

Okay. What is one of the best pieces of advice you've ever received?

Amanda 04:33

Um, one of the things is probably when things go wrong in your life you just need to stop and think five years is this really gonna matter? Who a lot of people they get upset about little things. It's just in the moment and they truly don't matter down the road.

Erica 04:46

Hmm. Quality advice right there. That is good.

Amanda 04:51

It saves me a lot of heartache and stuff when I think okay, is this really worth the effort of being upset about

Erica 04:57

I like that. Do you have any pets?

Amanda 05:01

Yep, I've got two cats bank in Berkeley.

Erica 05:06

What is your favorite thing to nerd out on?

Erica 05:09

And I love watching old episodes of Star Trek The Next Generation. And even though I've seen them 1000 times, I still watch them whenever they come on.

Erica 05:18

I do too.

Amanda 05:20

Yeah, there's just so much you can learn from that.

Erica 05:23

Not a lot of people know this about me. But it is definitely like a comfort show for me.

Amanda 05:29

I agree. I have the same feelings about it. My sister I grew up, our dad passed away when we were little. So when we started watching that show, we really thought Captain Picard would be like the best father ever.

Erica 05:41

Oh, yeah, I could see that. He's definitely a father.

Amanda 05:45

That's a lot of the why it brings such comfort that Yeah, I want that as my family. And so yeah, I like it.

Erica 05:53

Okay, are you an early bird or a night owl?

Amanda 05:56

Probably a combination of both right now. I just feel like a tired middle duck type thing.

Erica 06:03

The first time I've got that answer, but I feel like everyone can relate. (laughter from both)

Amanda 06:09

It just kind of depends. If I've got something going on that day. I like, oh, we're going to yard so I can be up like two hours before with no problem.

Erica 06:16

That's like Randy going fishing...

Amanda 06:18

Yeah. But if it's something that, oh, I don't feel like get out of bed. It's kind of hard. I wouldn't really count myself as an early bird. So...

Erica 06:29

That's a very good answer. I I appreciate that honesty. What is one word that would most accurately describe you?

Amanda 06:38

And probably positive, someone I used to work with used to refer to me being a Pollyanna type of a person, no matter what was going on, I always look for the good things.

Erica 06:46

Does that come naturally for you?

Amanda 06:49

It does. And I've had a lot of people say they wish I just knock it off.

Erica 06:54

Well, that's kind of unfair. If anything, I I'd hope that that's a little infectious, it could, you know, rub off on people.

Amanda 07:01

I just, you know, I just, I've always been like that even as a child, I just no matter what's going on, I just look for the good things. And, and it served me well through the years. So I just keep doing it.

Erica 07:12

I have preached in the past the importance of finding the silver lining in things...

Amanda 07:18

Most definitely.

Erica 07:19

And that may not be for everyone..and I understand that. But it definitely has gotten me through some very difficult times.

Erica 07:28

Exactly. And I also think going on with that. Just everything happens for a reason. And you may not know, you know, five years ago why something happened? Somewhere along the line is going to come up. But oh, that's why I was in that place at that time.

Erica 07:42

It's hard to hear those words in the moment.

Erica 07:45

What is one thing you're presently grateful for?

Amanda 07:48

Um, well, one back to the 2020 thing. I think it taught me a lot about being grateful for like little things, you know, time with family. You know, we always call them Family Fun Days, whenever we all get together. And, you know, the fun days, we had together just little moments. You know, making time for myself, that was something that I'd never really taken the time or a priority to do it until I was forced into that situation with the pandemic. So I think that's why a little things like that, that really are what's important right now and just having people that believe in me.

Erica 08:19

What comes to mind when I ask you to recall a memory or a moment that brings you great joy.

Amanda 08:26

One of my favorite memories is when we were kids, my grandparents made sure we went on like the typical family vacations where you load up in the car, drive through 12 states in two days or whatever. And one of my favorites - granted today's they would not, this would never happen - but it was my aunt and my grandparents and me and my sister and I was maybe 10 or 11 years at that age. My sister's four years younger. They had taken my aunt's little S10 truck with like a cab and a half. And my grandpa had built, he taken like the seats out of a car, and mounted them up in the back of the truck, like bolted them down with like a little console in the middle, and they have like a camper shell on it. And my sister and I rode all the way to the beach on that vacation. And they'd let us each bring up like a box of Barbies. And we played all the way down there and all the way back. That's probably one of my favorite vacation we went on.

Erica 09:14

That does sound awesome! And so illegal nowadays, but totally awesome!

Erica 09:20

Oh yeah. Now it would never ever happen. But back then it was like oh, that's okay. And I remember even put like seatbelts in because I remember having to wear a seatbelt but we were in the back of a truck and it was all stuck here. We didn't move around or anything but we played all the way down there and all the way home and and that was probably one of my favorites.

Erica 09:38

That sounds amazing. I can feel the warmth in that too. Can you describe to me a little bit about yourself and what you do.

Amanda 09:47

Okay, well, I've always had the desire to help people and make a difference in their lives. And when I started with DSCC as a customer service assistant, I was always reaching out to help the care coordinators with the family on their caseload. And one of the benefits for our agency is educational assistance for those who want to go back to school, and social work just seemed like such a natural fit for me. So I took the opportunity, and I just recently finished my Master's in Social Work.

Erica 10:12

That is awesome. Can you tell me a little bit about DSCC, and your role in it, and what you do as a caseworker at DSCC?

Amanda 10:21

Yeah, as you know, from your experiences with the kids, when you have a long hospital stay, the social worker helps you with resources and supporting you and your family with anything that might come up. I'm kind of the at home version of that, if you will, I regularly check in to see if there's anything I can do to help.

Erica 10:36


Amanda 10:37

DSCC is the point of contact for the Medically Fragile Technology Dependent Waiver. So throughout the year, I collect documentation to support the reasons why a child needs to continue to be a waiver participant. The needs of the family, they kind of guide me on what else I do. Some families needed assistance when their problem arises with like nursing services or supplies. Sometimes I find resources for families help meet their basic need or something that insurance might not cover. I have attended IEP meetings with families to help advocate for their child's education. And for some families, they just need someone to listen to their story and understand what they're going through.

Erica 11:13

And so some states, I'm not sure some states may not have DSCC but they might have an equivalent of that. Can you explain that?

Amanda 11:21

Yeah, a portion of our funding comes from the Maternal and Family Block Grant, I think it's called. So a portion of that. So every state has a portion of funds like that, that they use. So every state has a program like ours, just they're not exactly the same requirements and stuff. But they all serve the same population.

Erica 11:40

Yeah, and I'm learning from talking with other families that they may not have the same requirements, they may have more or they may have less.

Amanda 11:48


Erica 11:49

But they may also not cover the same resources or, you know, or the way they distribute that kind of coverage is in like a chunk of money every couple of years or...

Amanda 12:00

Well and the history of it, tt all started with a little girl named Katie Beckett. Katie Beckett and her family and want to say they lived in Iowa, maybe...that's where it started. It originally started, like when Reagan was president. She was a little girl that was in the hospital a lot from the time she was born till she was like three or four. And her family advocated very well for her about, "you know, hey, we can do this at home, if we had some help, we could take care of her just as good as the hospital can, if we had a system." And they took it on up and it got the attention of Ronald Reagan. And they were so passionate about what they could do and how it would be a better alternative not only for Katie and her family, but you know, cost so much less than her staying at the hospital. So that's where it all started. So a lot of the states have the program, and it's actually referred to as the Katie Beckett Waiver Program.

Erica 12:53


Amanda 12:54

Yeah. And she actually just recently passed away in like, the last couple years as an adult, and she's got to spend her entire life being taken care of by her family with, you know, nursing services in place and stuff like that.

Erica 13:06

Oh, wow.

Amanda 13:07