Government Resources for Families With Special Needs Kids
April is Autism Acceptance Month. In honor of that, Maggie sat down with Femme Frugality's Brynne Conroy to talk about the resources that are available for families with special needs kids.
Whether you or someone you know has a child with special needs, it can be difficult to navigate the financial landscape that comes along with it. In this important episode, Brynne Conroy breaks down the different government resources that are available for children, families, and adults with special needs.
Related Links:
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Find out about your state’s ABLE programs.
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How Disablism Affected My Finances: An account by an Autistic adult
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Career resources for disabled youth. (Read this as early as your child’s entry to middle school!)
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Femme Frugality on Instagram
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Femme Frugality on Twitter
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To learn more about Maggie and her coaching and speaking services, visit www.maggiegermano.com.
To get more involved with Money Circle:
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Join the free Facebook group
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The theme music is called Escaping Light by Aaron Sprinkle. The podcast artwork design is by Maggie’s dear husband, Dan Rader.
TRANSCRIPTION
Maggie Germano 0:05
Welcome to the money circle podcast, a safe space where women can learn about and better understand money so that they can take control of their finances and create a better financial future for themselves and their families.
Hey there, and thanks for listening. I’m your host, Maggie Germano. And today I’m talking to Brynne Conroy, who is a personal finance writer, the founder of femme frugality, and the author of the feminist financial Handbook, in honor of April’s autism acceptance month, we sat down to chat about the government resources out there for children with special needs. If you or someone you know has a child with special needs, and you’re looking for resources or support, this episode is for you.
Welcome, Brynne, thank you so much for being here today.
Brynne Conroy 0:55
Thank you for having me. I’m excited.
Maggie Germano 0:57
Me too. So why don’t you tell listener who you are and the work that you do?
Brynne Conroy 1:03
Yeah, so my name is Brynne Conroy, I am a personal finance writer. And at this point that kind of spans a large arena now, I do a lot of freelance work. So you might see my work online on larger sites. I run my own site called phenom frugality. I have a book called the feminist financial Handbook, and I run a benefit company called personal finance by women. So that’s what I do.
Maggie Germano 1:27
Yes. And I’ve been following you on most of those avenues for a while now. And I’m excited about the personal finance for women, that group that you’re creating and the work that we’re gonna do with that.
Brynne Conroy 1:38
Yeah, definitely. Me too. Me too.
Maggie Germano 1:41
And so how did you get into this line of work?
Brynne Conroy 1:45
Um, by accident, actually, um, I didn’t have a lot of money. I was living well below the poverty line, not a whole lot of hopes of getting out. And then I found out I was expecting and I realized that I needed needed to find a way out. Screw Hope it needed to happen. So I did, I found a lot of ways to save money, I found some more lucrative side hustles I found a way to go back to school for free. I started finding hacks on the tax code for being a lower income person, and they’re not really hacks. They’re just rules that I didn’t know about before. And when I started getting to that point, I started losing my like in real life friends. They were like, okay, she’s talking about the tax code now, like, we’re out. And but I knew that there must be other people that could benefit from the information because I sure as heck needed it. And there hadn’t been pleased for me personally to find it before. So I started a blog called femme frugality. And yeah, that’s kind of how I got started.
Maggie Germano 2:52
That’s great. And honestly, I’ve heard that similar kind of story from most people, both in the finance field and then just other entrepreneurs that I’ve met and spoken to, is that they weren’t planning on getting into this line of work. That was for me, too. It was like, Oh, this is something that’s fun. Oh, wait, it’s like actually really helpful for other people. I guess I’ll pursue this.
Brynne Conroy 3:14
Yeah, exactly. Like when I was in college, like blogging wasn’t a career field. That wasn’t a real thing. And now it is. So it’s really kind of cool. I think we have this opportunity to create opportunity in ways that it wasn’t accessible before. And so that’s really fun. So even though we don’t know what’s coming next, it’s kind of fun to be a part of what’s next.
Maggie Germano 3:36
Yeah, I completely agree. And you started touching on this a little bit by talking about kind of your own story and why this information has been so helpful for you. But tell me a little bit more about why you think this work that you do is so important and how it affects others.
Brynne Conroy 3:54
Definitely, um, so I kind of struggled with that. Honestly. Whenever I start started doing this full time, I was coming in from a career field that I loved. But it was unionized, there was a work shortage, and I was young. And so I had to shift gears and I had this writing thing going on, on the side as a side hustle. Um, and I was very lucky and fortunate for that. And I was very fortunate that I was able to kind of shift it into a full fledged business very quickly, to provide for my family without too much turbulence there. At the same time, when that happened, I felt like I lost a lot of meaning in my work, because sometimes writing about money can be either dry or you feel like the people who want to pay you the most or have the biggest budgets to pay. You are writing about content to people who maybe don’t need help, but are kind of looking for more of those hats and they’ve already got money and they’re doing all right and that in that wasn’t necessarily the audience that I wanted to serve. And so I’ve been thinking about this a lot lately, just looking back on like since I took this full time to now. And I think that what I’m finding is that my career might not be across a single modality. And the common theme throughout my career might be looking at this intersection of oppression and how it affects us as a larger society and culture, but then also how we can kind of work within it as individuals to make things better. And I think that’s where the focus of my work is, and where the meaning lies. And that’s where I do my best stuff. So regardless of what modality I am, I’m in I think, I’m gonna try to stick with that theme of meaning as much as I can.
Maggie Germano 5:45
Oh, absolutely. That really resonates with me too, because I mean, I think that’s why when we first met at fincon, we really connected because we were talking about like feminism and oppression and the relationship with money. And yeah, the way that you are always talking about that intersection of just the different things that affect people in good ways and bad ways and privilege and the lack of privilege and all those sorts of things. And so I definitely see that very much reflected in your work on it.
Brynne Conroy 6:17
It seemed funny if you had met me a year before at fin con, I was like in this existential crisis, I was like, What am I doing? Why are we all here? What does this mean? So I’m glad that it came across that way a year later, because Yeah, definitely. It’s It’s a hard, hard road to walk I think in personal finance.
Maggie Germano 6:37
I agree. There’s, there’s like different kinds of nut camps, but like, certain people are focusing on like what you said kind of those money hacks for people that already have plenty. And then there’s other people that are really trying to include a lot of information and guidance for people who maybe don’t have a ton to work with right now and want to get to a place where they’re even Just having a little bit of stability.
Brynne Conroy 7:02
Yeah, for sure. Exactly.
Maggie Germano 7:04
Yeah. And related to that, that is a perfect segue into our topic for today, which also came up at a more recent fin con when we were talking. And it was about an, you know, experiencing, having like parents having special needs children and kind of what those experiences are like on the financial side and what kind of opportunities they might be able to look forward to get some support. So could you tell me a little bit about your experience and your work related to having special needs child?
Brynne Conroy 7:40
Yeah, definitely. So I have an autistic child, and they were diagnosed after I started blogging. But before I started doing this, like full time, and so it was behind the scenes, there were kind of these financial hurdles that I didn’t know were coming. I mean, I had no idea to expect them. No parent knows if their child is going to be born with a disability or not. And then trying to plan for that financially and know this incredibly complex system is just overwhelming. So I was running up against a lot of that. And, and eventually, I got to a point where again, I was like, hey, if this is a problem for me, it’s got to be a problem for other people too. And I noticed that there was just this real lack of information, or at least easily accessible information for parents to figure out things like getting their kids on Medicaid, even if they make too much money. Getting things like food supplements covered by insurance, fighting with insurance companies, and having to cite law in order to get them to cover medical equipment that your kids legally entitled to a lot of its medical stuff.
Maybe that’s not surprising, but also learning about things like asset tests that can prevent families from getting access to health care. I’m super fortunate. And I live in a state where getting my kid onto Medicaid is fairly easy, regardless of my income level, because they are disabled, they have access to that. But this is a big country with very, very varied rules in each state for each Medicaid program. And so the access that I have is not universal. And so if you make too much money, then you can’t get access to health care. Now, there’s special accounts. I don’t know I’m probably delving way too deep into too many topics at once here. But yeah, those are kind of some of the issues that you come up against. And it’s kind of overwhelming and there’s not a whole lot of guidance along the way.
Maggie Germano 9:51
Yeah, it seems that way. Like, it’s not something like you said that you could necessarily prepare for I’m sure emotional As well as financially and just in terms of logistics and the things that you need or the systems and programs you need to go through. And so you started talking a lot about the health care access and how that’s a big piece of it. But could you expand a little bit more on some of the financial implications of having a special needs child?
Brynne Conroy 10:24
Yeah, so when we talk about health care access for a special needs child in general, this is going to be like a lot more than just going to the doctor, or like my kids sick and I need to go in or even more than hospitalizations, which some children might need. Um, it’s also going to be all the things that you need in the home that allow your child to live at home and function within the community. Those are all things that are legal medical needs and that Medicaid should be covering so We’re talking about things like maybe your kid doesn’t get the right nutrition. So they have a supplemental shake. Maybe they need a special bed to sleep in, or special equipment modifications on your vehicle so that they can get in and out easily. All of these different things are medical needs, and if you can get them covered through Medicaid, it’s great and it’s awesome. And it’s amazing. Um, but a lot of times that’s a struggle.
Maggie Germano 11:29
So, so you mentioned that you’re, you know, fortunately living in a state where your child can qualify for Medicaid and go on Medicaid, regardless of your income. How might someone figure out if their state allows that or not?
Brynne Conroy 11:47
I actually published a guide that I update annually, and it goes through all through all through 50 states, and then plus the District of Columbia. And it looks at If you can get on, in some states, you can get on pretty easily and others you have to go through a complex application system for multiple different steps, getting waivers getting SSI and everything. But that guide will take you through each state and kind of help you through. I would encourage people to check that out in April though, because that’s when it renews.
Maggie Germano 12:23
So you’ll get the most up to date information, then. That’s great. And I will definitely share that in the show notes so people can check that out. And yeah, are you updating it and release releasing it in April because of like tax changes or other things like that, like what usually kind of changes from year to year.
Brynne Conroy 12:43
Honestly, I started a series a few years ago for autism acceptance month, and that happens to fall in April. So that’s just when it when it is there’s different changes to different Medicaid programs throughout the year all throughout the year. So there is as I can tell, there’s not really a great time of year to do it uniformly. Yeah. So April it is.
Maggie Germano 13:05
Yeah, no, that’s great.And that makes sense, especially with autism acceptance month and having it kind of align with that. That makes a lot of sense. And that sounds like a really helpful guide, especially if it’s going through each state and Washington, DC because like you said, there’s it’s a huge country, states do things differently. It can be very frustrating and overwhelming to figure out. So I’m glad that you have that resource.
Brynne Conroy 13:31
Yeah, definitely. And I mean, it was born out of kind of addressing my own ignorance. I remember hearing stories about other parents in different parts of the country struggling with things that I found fairly simple. I was like, Well, why don’t they just get on Medicaid? And after I found myself asking this question enough times I was like, Oh, you know what, because you’re ignorant, Brynne, and because like, just because you’re super lucky doesn’t mean that everyone everywhere else in the country is.
Maggie Germano 13:59
yeah. That’s something we don’t necessarily consider. because like you said, we might not have the information.
Brynne Conroy 14:05
Yeah, for sure.
Maggie Germano 14:06
Yeah. That’s great. And you so we’ve talked a lot about Medicaid. What are some other services that are out there that parents have special needs kids might be able to utilize?
Brynne Conroy 14:18
Yeah, so one major thing, um, I guess we can talk a little bit here about retirement. And what that looks like. I honestly haven’t quite figured that out yet. Because I know for my child, I am not sure if they are going to be able to live independently after I pass, or if they will not, if I’m going to be taking care of them while I myself am in retirement, how all that looks and how it works. Regardless of how it works, it’s going to be extremely expensive. And it feels kind of like this big infinite goal, right? I stashed away money and save for retirement. Anyways. Obviously better to be over prepared than under. And by the same token, there’s a lot of unpredictability regarding my child’s education. And my child is extremely intelligent. But I mean, there’s obviously autism related traits that make operating in a traditional classroom difficult. So I’m not sure about the whole college thing and how that’s going to work. I want to save for that. But how am I going to save for something that may or may not happen? It’s just it’s a lot of unknowns. So a few years ago, they came out with these accounts called ABLE accounts that kind of help you address some of those unknowns. So there are 529s and you can use them for your kids college expenses, or if you’re disabled yourself, your own educational expenses, or you can use them to save for just anything that you need. And the money that’s in there is gross. tax free. Whenever you pull it out qualified withdrawals or expansive it’s anything that relates to the disability and as a disabled human being, that means anything that relates to you, that means things like rent, groceries, the basics, um, and then also things that you know, maybe more complex needs related to your disability. Those accounts also help out when people are applying for Medicaid, if there’s like an asset test saying like, Hey, you can only make $700 a month otherwise you can’t get on Medicaid. That may be a slight exaggeration, but when you put your money into an ABLE account, you’re able to actually build emergency savings money that you can pull out when you need it for a rainy day or a medical emergency, without it necessarily counting against you on those asset tests. So for a family that might mean finally being able to get access to Medicaid.
Maggie Germano 17:04
That’s amazing. And when did you say that those accounts were created?
Brynne Conroy 17:10
Um, so the legislation passed in 2014 or 15. Finally, and that was something that the disability community advocated for themselves and did so successfully. Also, they did a lot of advocacy work with that health bill that almost passed but then john mccain thumbs down and it didn’t pass. A lot of a lot of the public pressure was created, again by the disability community themselves, because the policy would have really, really hurt Medicaid and Medicare programs which threaten people’s very lives like it’s it’s not even an issue of Can anyone reasonably work hard enough to be able to afford these health care benefits is the problem is that healthcare is so expensive in this country that of course, especially when you’re you’re living within a system that forces you to not be able to earn X amount of dollars or save X amount of dollars.
Maggie Germano 18:14
That that makes a lot of sense to me, and it sounds like the ABLE accounts, it’s, it’s double important where it’s like, you can open it for yourself as a way to be able to grow some of that money that you need and use it for the things you need tax free, as well as being able to use it for your child. And like you said, not be kind of constricted to using it for education and being able to use it for something else and have it be just as helpful.
Brynne Conroy 18:44
Right, right. It gives you an advantage to vehicle to save and just like everybody else, even though like you have that kind of like built in unpredictability. Um,yeah. So it’s really cool and it’s awesome. I’m very excited about it.
Maggie Germano 19:00
Are those accounts available in most states? Is it kind of a rolling implementation? How does that sort of work?
Brynne Conroy 19:10
I think we’ve probably got over half the states now with plans out, don’t quote me on that. But it’s it’s a number that’s steadily increasing and re in your area and the DC area. I know there’s like the Virginia ABLE account is a big one. But some of these plans you can buy across state lines. So it doesn’t really matter like what state you live in. As long as you go by that plan from another state. You might miss out on some like state tax advantages. If you do it that way. You kind of just have to read the fine print. But yeah, it really shouldn’t matter where you live, you should be able to buy one anywhere you you are.
Maggie Germano 19:50
Okay, that’s good to know, too. Because, yeah, especially the ability to open an account with a different state, even if you’re, you’re not living there. That’s really good to know.
Brynne Conroy 20:00
Yeah, definitely.
Maggie Germano 20:02
Great. So are there any other either accounts like that or services like that that other, you know, parents should try to take advantage of?
Brynne Conroy 20:14
Yeah, definitely. So I think probably the last big one at least the last big one that I’ve talked in written about so far today is probably OVR programs or vocational rehabilitation service programs. And the name is going to vary slightly from state to state to make it super confusing for you. But essentially, you’re looking for that word in the in the title. You’re looking for vocational rehabilitation. And what that is, is if you have a disability, first of all you can apply for essentially, I’m not sure if it’s technically a grant or a scholarship, but essentially, it’s up to in different states. It’s different amounts. In my State in Pennsylvania, I believe it’s up to the max tuition for Community College, and you can get that amount applies to your school. And that’s just money that the vocational rehabilitation offices have sitting there waiting for students. depends on your state as to how that’s administered. Um, but then they do this other cool thing where starting sometime in middle school or high school, depending on how old your child is for their grade level, they’ll start coming in and talking to your kid about Okay, what do you want to do when you grow up? And what accommodations are you going to need to achieve your vocational or career goals? What kind of school do you want to go to? Can we get you into any mentorship programs or shadowing programs so you can see what it’s actually like, and see if this is something that you actually want to do so we don’t waste too much time pursuing it, and advocating for all of those accessibility issues. That you may need addressed and how do you advocate for yourself in a work environment? And what are your rights. And so there is really a lot of power in that training very early on in someone’s career. And starting in middle school or high school is a great way to do it. If your kid is in middle school, and no one’s brought it up to you yet, bring it up in the your kids IEP meeting or prior to it. Because it’s a resource that’s there in all 50 states, again, administered differently, the benefits look a little bit different in every state. But it’s definitely something you should be taking advantage of and can have a huge long term impact on your child’s future earning abilities.
Maggie Germano 22:46
that sounds so impactful.
Brynne Conroy 22:50
yeah, no joke. Yeah, when those programs are run, right, they can really, really change lives.
Maggie Germano 22:56
Oh, it really sounds like it because it’s not only you know, the final In support of a grant or a scholarship, but there’s also that pre planning that mentorship option, trying things out and seeing if you’re actually gonna like it once you get in there and just doing all of that preparation. I feel like that’s invaluable.
Brynne Conroy 23:16
Yeah, definitely, definitely. Yeah.
Maggie Germano 23:22
So, we touched on this a little bit before we started recording, so But are there like, people out there who are growing and building support communities for parents or folks with disabilities, that could be really helpful and feeling helping them feel less alone, and also providing more of those resources and that support that they might be looking for?
Brynne Conroy 23:48
Definitely, um, the first resource I would look to either for financial or emotional support is your pediatrician. A good pediatrician is key because they’re going To know all those people who are local to you, and local in this case, I mean internet communities are wonderful and great, but local in this case is super important because laws vary from state to state so much. And then within states, going from community to community, your access to resources really varies to like, it’s great to have access to a specialized doctor. But if you have to drive five hours to access them, that benefit isn’t really helping you. So like your pediatrician knows not only the parents support groups who like maybe everyone goes bowling together once a month or something, but they’re also going to know how to help you with like your money and stuff and working within that Medicaid system. Um, another good thing when you’re looking for those local advocacy groups like a Google search is great, but I would make sure to look for ones that are either run by or have heavy involvement from disabled people themselves. Ideally adults, um, not necessarily ones run by parents. A lot of times when we see parent run organizations, what we end up seeing is a lot of good intentions, but people not really understanding what it means to be disabled. And there’s still kind of like enable this lens cast over everything. So it ends up actually compounding some of the self esteem and longer term issues that disabled kids face because of the way our society looks at disability and, and trying to advocate for things that they think will help but that actually end up causing more harm. So that’s actually like a really, really important part of evaluating like any type of support group to make sure that they have disability, cast in a positive light and have disabled people at the center. Like I know, for example, with autism, like a group like Autism Speaks is like actually very detrimental. To autistic people in the autistic community, the perpetual focus on finding a cure on for who my child is, you know, that’s there’s nothing that needs to be fixed about my child. They’re an awesome human being exactly the way they are. And Autism is a huge part of that. It’s an integral part that can’t be separated from them. So when we have organizations of parents coming in, who are trying to cure their own problems and their own stressors in life, and not recognizing that those problems actually come from the system, rather than from their kids disability, what we ended up seeing is like actually some pretty harmful actions that probably aren’t going to serve you very much emotionally either in the end. Um, so yeah, when you look for local advocacy groups, just make sure they’re focusing on disability in a good way.
Maggie Germano 26:52
And I really appreciate you pointing that out to because I you know, as someone who has not had those same experience and that might not be something that I think about. And so exactly like you were saying making sure that the people that are being addressed by this organization are the ones that are actually heavily involved and know what’s right for them in order to do that advocacy.
Brynne Conroy 27:17
Yeah, definitely. And even just within support groups, it helps you to, in your kid to have an adult model, like to see that like, Oh, hey, look, I can grow up to be successful. And actually, there’s nothing wrong with me. Like, I’m just different. And like, that’s okay. And there’s still a place for me, and I’m so important, you know,
Maggie Germano 27:37
oh, yeah. I love that. I love that. So where else can people find more resources or education around? Either just raising a special needs child as well as some of those opportunities and services and resources available to them?
Brynne Conroy 27:58
Definitely. Again, kind of like on the medical and local side, I’m going to defer to probably pediatricians who are most on the ground and interact with multiple families facing the same issues. As far as finances go, looking at those state by state evaluations and different things, I’ll actually send you a link Maggie, I have a landing page full of a bunch of work I’ve done but also a bunch of work by other people that I found extremely helpful to me and my own journey.
Maggie Germano 28:33
Thank you. Yeah, I’m sure that will be very informative. So I’ll share that in the show notes as well.
Brynne Conroy 28:39
Awesome. Yeah, go check it out, guys.
Maggie Germano 28:42
Anything else you want to make sure that listeners learn and take away from this conversation?
Brynne Conroy 28:49
Yeah, definitely. Whether you have a disabled child or not. Um I mentioned before I wrote a book called the feminine Financial handbook. And in that book, we looked at women’s money situations across a bunch of different vertices, and one of them was disability. And I was very, very, like lucky and honored that these women chose to share their stories with me, and shared how they interact with money, kind of like we were talking about before as disabled adults, like what does that look like? What can your can expect? And then also, how can you help your kid? So that chapter in that book, I think parents will find it helpful. But I also think that if anybody wants to learn more kind of about these concepts of greater acceptance, rather than awareness or inclusion, rather than cure slim, that would be a really good place to start and to kind of hear from women who have lived it and been there.
Maggie Germano 29:50
That’s great. And I’ll link to your book as well so folks can pick up a copy of that.
Brynne Conroy 29:55
Well, thank you.
Maggie Germano 29:57
Anything else you’d like to promote to listeners? Things you have going on that you want to make sure people know about.
Brynne Conroy 30:03
Hmm. Well, if you’re interested in more work by disabled writers themselves, we have a couple of featured on personal finance by women. Um, and it’s as easy as it sounds. It’s just personal finance by women calm. So you can go there and check it out and check out some more of their lived experiences. But yeah, I’m, I’m perpetually creating a fair amount of content. So just, you can follow along on @femmefrugality on any of the platforms and come along for the ride.
Maggie Germano 30:35
Gotcha. And is that how folks can get in touch with you as well?
Brynne Conroy 30:39
Yeah, that’s perfect. Um, Twitter, Instagram, Facebook, Pinterest, all of them. Just @femmefrugality.
Maggie Germano 30:46
Alright, and I’ll share that in the show notes as well. But thank you so much for being here and talking about this topic because as I said, this is something that I don’t know a ton about traditionally and so even just chatting with you in passing At fin con about this and learning more about those ABLE accounts, I, I think that this is a really important topic and just making sure that people are getting as much information as they possibly can.
Brynne Conroy 31:11
Oh, yeah, definitely. And I so appreciate you giving a platform to it. Thank you, Maggie. Thank you so much.
Maggie Germano 31:22
Thank you so much for listening again this week. Don’t forget to rate review and subscribe in your podcasting app so that more people hear about the money circle podcast and listen. If you’d like to get more connected with money circle or with me, there are lots of ways you can do that. To join the free Facebook group, visit facebook.com/groups/moneycirclegroup. To stay informed of any upcoming events, subscribe to my weekly newsletter at MaggieGermano.com/subscribe. To sign up to attend the next money circle meetup, visit Maggiegermano.com/moneycircle. To learn more about my financial coaching services, my speaking and workshop offerings, or just to read my blog, visit Maggiegermano.com. You can also follow me on instagram and twitter @MaggieGermano. Thanks for listening and have a great week.
