Navigating Financial & Educational Resources
Show notes for Embracing Autism Podcast — Ep 105

Introduction:
Lia: In this episode, we will review a variety of financial resources to help support your child that are available in the United States. It’s important to note that each state has different programs, so please check out our podcast notes to learn more about your specific state.

Lia: Welcome to Embracing Autism, the podcast for parents of autistic children seeking advice and support while spreading awareness and acceptance of Autism Spectrum Disorder. I’m Lia!

Matt: And I’m Matt!

Lia: And each week we’ll discuss our journey with autism and talk about how to embrace your child’s individuality while providing guidance, tips, resources and sharing our personal stories. This is-

Lia & Matt: Embracing Autism!

Discussion:
Lia: So in this episode, we want to touch on financial support systems and financial resources. Mostly because finances seem to be one of the biggest struggles of parents with autistic children. A lot of studies indicate that money is really an issue when it comes to all the therapies and all the supports that are needed to provide to autistic children. So we wanted to just give you guys additional resources to help you out. Matt is a little bit more of an expert on this area, I’m going to leave most of the talking up to him. And I’ll touch base and the key areas that I know a little more about.

Matt: There are actually three roads when you’re looking for financial support for your child. And when we say financial support, we don’t only mean a monetary value, that you’re getting a grant or a scholarship or something in that regard. It’s also services that are free and that are given to you by the government. So the first one we will look at is the school programs. So for public school districts, a federal government is required to provide services to your child to meet their individual needs. Now, this could be in the form of an IEP or an IFSP. So the first thing is making sure that you’re advocating for your child to be put on one of those programs depending on which one is better for your family. Now Lia is a better expert on the IEP/ IFSP because she filled it out for our daughter. So I’m going to let her kind of elaborate a little bit on that.

Lia: Okay, so I’m going to touch base a little bit on some of the opportunities available in the public education sector. So essentially, your child — if they are a special needs child — has the right to free and appropriate education (FAPE). And what that means is there have been some Acts that have been passed that protect your child’s right to do that. So one of those is the IDEA Act. And the IDEA Act is the Individuals with Disabilities Act, that one is the one that specifies that regardless of your child’s disabilities — and that includes autism — your child is entitled to early intervention services and special education. This also means that you as a parent are entitled to be treated essentially as an equal partner with the school district in deciding what that education plan is going to be for your child and how to meet his or her specific needs. So this is the part where you really need to kind of push to advocate because some schools will push back and not necessarily see you as an equal partner in this process. But you really are legally entitled to be an equal partner. And you really do have an equal say on how your child’s education will move forward, according to the law.

Lia: Now under IDEA, there is something called ‘Free and Appropriate Public Education’. And that’s frequently referred to as just FAPE. And that, again, applies to all children with disabilities. This essentially means that your child is entitled to be specifically accommodated. So they’re entitled to have their education specifically tailored to his or her specific special needs. And that is going to be what allows you to help your child make the progress that they need in an educational setting. So one of the challenges here is working directly with the school district to try to determine what’s going to be appropriate for your child and thereby determining what accommodations or resources they’re going to be provided. If you’re not able to advocate strongly, sometimes the schools push back and give you less than what you expected or what you thought your child would need. So again, this would be the area where you really try to fight back and use the law to your advantage to try to get your child the services that they are entitled to. Early Intervention services is another free program that’s available through the public school system. We mentioned this a little bit in earlier episodes. And that means that any child that’s younger than age three who has a developmental delay, like autism, or a condition like autism is entitled to early intervention services through these programs for absolutely free. So there’s no cost associated with this. And this is a great free resource for you. This usually will include things like physical therapy, speech therapy, things like that. And that’s where the IEP and IFSP programs kind of come into play. So once you’re in this program, what happens is you get an IFSP. That’s an Individual Family Service Plan, and that is based on a comprehensive evaluation of your child. And it essentially gets an idea of where your child’s current functioning levels are and sets you up with some goals and specific services that are going to be provided to your child and your family. This is a family-oriented service because the parents get some family coaching and parenting courses that you can take to help you. But it also assists the child in things like speech, language, occupational, physical, and all sorts of evaluations that are necessary, including free hearing tests.

Lia: Now, once your child ages out of that program, where they essentially turn four, they move on to special education services through the school district as well. These are also free services. And they’re a little bit different from early intervention. So early intervention will address your child’s overall development. But special education focuses more on providing your child with education with accommodations for their disability. This is where you would go ahead and get that IEP or Individualized Education Program. Like the IFSP, the IEP will also describe your child’s strengths and weaknesses and help set goals and objectives. But it’s a little bit different in the sense that it’s going to be related entirely to your child’s needs and how those needs will be met within the context of school specifically, and within the school walls. So the IFSP, as I mentioned, is more of a family plan. And it’s more about how we can help your child in a family setting or in an at-home setting. The IEP switches that over to a school setting and only provides those supports for the school and doesn’t really provide any more of that parent support system. It’s really more child-focused. So your child may be entitled to these resources, they should be entitled to these resources, but it really varies state by state and school district by school district because not every school gets funded the same way. So schools with more funding tend to have more resources available. And schools with less funding that might be in more rural or suburban areas tend to not have as many resources available. So this might be something that you want to consider when you’re looking into a school district. If you’re moving anywhere, you might want to consider what the funding situation is like for that school.

Matt: Now, Lia talked about the funding on a district level through the school districts, but there’s also funding on a state and federal level as well and this is through Medicaid. So Medicaid provides long-term services and support based on a wide array of services that they offer. Basically, it’s government health insurance for children and adults and it helps with various disability services. Linked with Medicaid is also the home and community-based services which is also referred to as the waiver or the Autism Waiver. Now, this is much more flexible than Medicaid. This alternative service also works for the family of the individuals as well because it allows the care to actually come into the home and doesn’t force the child or individual into a facility when services can be provided at the home or adjustments can be made to the residents as well. People are able to use a service if they don’t qualify for Medicaid. Acting within Medicaid is also the Department of Developmental Disabilities. Now, this is the facilitating branch of Medicaid in many states, so it differs state by state. So you’ll want to look into making sure what qualifies for your state. And as previously mentioned, it’s closely linked to Medicaid. It provides resources that are ultimately approved by Medicaid through this department. It also supports employment services for disabled individuals.

Matt: In addition to Medicaid, you also have the Social Security Administration. Now SSA can be broken down into two groups and the first group would be the Supplemental Security Income. Now, this is a monthly payment for people with disabilities, which is also income-based. Now for this program, this is if your child is under the age of 18 and is currently not working. So what they do is they calculate the income and resources for all members living within the family of that child who has been diagnosed. Now the classified income is any money that is made. This could be through work. It’s also other resources such as social security, or any type of gifts that are received. If you receive any free supports, any type of food or shelter it is ultimately taken into consideration and they also look at the resources that the family receives as a whole, all living members in the family. Now, these resources would be bank accounts or stocks, cash, vehicles, or any type of monetary item that could be sold off as a liquid asset and they also look at any type of liquid cash over $2,000. In addition to SSI, there is also the Social Security Disability Insurance or SSDI. Now SSDI is if your child is over the age of 18. The SSDI provides income supplements for dependent autistic adults, this would be for disabled adult children. Now the important thing for the SSDI is that the adult child has to be diagnosed prior to adulthood. Since this is federal it is operational across all 50 states and the child would be eligible if the parents had paid into Social Security.

Lia: Now there are other programs that you might be able to find in your local area, things like the Head Start program. This is something that is run by the United States Department of Health and Human Services and it provides a comprehensive early childhood education. It’s usually available to those who do have developmental disorders and things like that. That’s why it’s called Head Start, it’s kind of to help situate your child and get them the headstart that they need to get them ready for school. So it’s essentially a school readiness program for those that are going to probably go in special education or need some sort of assistance. And it also helps with parent involvement services for low-income families. There are also some other perks to consider, things like having priority in public transit systems. A lot of times they have a disability department where you can go ahead and get that sort of priority seating or sometimes they have discounted tickets. And so that’s another service that you should look into if you are more in a metropolitan area. If you are also on the low-income side, there are also housing assistance programs if you have a child with disabilities. So I would definitely look into your housing assistance program and take a look at what services they may be able to offer you and your child due to the fact that they are disabled. Now again, depending on a state by state, county by county, there may be other programs available to you, I know where we are currently at, there’s something called Low-Intensity Support Services or LISS funds. This is essentially like a grant that’s provided to disabled children, it’s usually within $1,000 to $2,000. And it helps eligible children, they have things purchased for them that they may need, for example, an iPad for a communication device, or if you need something like a sensory swing, or one of those compression vests, really important items that you may not be able to afford otherwise; the LISS program will provide you funds in order for you to be able to afford those things. So I would recommend you look into your specific state and see if they have anything like that. Usually, it’s something you would find under the health department for your state. So for our state, it’s usually just like health .“your state”.gov. So if you live in DC, it’s probably health.dc.gov or something like that. So I would just take a look and worst-case scenario, just type it in Google and see what comes up.

Lia: Also, if you’re just looking for general resources in your state, all of that falls under the Developmental Disabilities Administration. So that website, for example, would be a subcategory of it. So that’s just DDA.health.‘yourstate’.gov. So I know they’re long URLs, but again, just Google it and they will let you know what’s available in your state in general. Now, just as a word of caution, I do want to let you guys know, because most of these programs are government-funded, they typically take quite a while. So for example, the LISS funds in our state, we apply basically mid-year, and it takes about a full six months — if you’re selected — to receive the items that they have ordered for you. It may take longer or shorter depending if there’s any sort of like hitch in the system, which does happen because again, it is government-run, which usually means it runs pretty slow. So if you are going to be applying for any of these services, whether it’s Medicaid or SSI, or LISS or anything like that, just be prepared that it’s typically a very long process. I know for some of the services like Medicaid, those things take at least a year, if not longer to get that approved. And also, please take into consideration that most people get rejected the first time around. I’ve heard a lot of people who have gone to apply for these services, and they have had to apply 2, 3, 4, 5 times before they finally get approved. So you may need to be persistent in your application process. And just don’t let yourself get down if you don’t get selected. Just keep applying, make sure all your paperwork is good, make sure all your ducks are in a row, and just keep doing it — be persistent. And hopefully, ultimately you will get those support services.

Lia: In addition to that, I also thought it would be important to know we discussed a little bit about the Autism Waiver. So the specifics of the Autism Waiver do vary state by state. But again, because it is a government-funded product, this means that the waitlist for those services is also incredibly long. So whereas some of these services may only take one or two years, that may seem long, but I’m telling you the Autism Waivers tend to be much longer than that. The averages that I’ve seen from state to state are anywhere between 8 to 12 years long. So I would essentially just put your kid on that list as soon as they are diagnosed and hope for the best. But there really is no guarantee. So I wouldn’t really plan on the Autism Waiver, I would just do it just in case, for the hope they might get that. But just be realistic about it. It’s quite a long waitlist.

Matt: Another thing to consider is your health insurance coverage. I would call them up on the phone and get an idea of what is being offered through your current plan. So generally health insurance will cover speech therapy, occupational therapy and physical therapy. However, they do have a set limit or a cap for the number of sessions that they’re allowed to authorize. So what you would want to do is call up your health insurance company and see if they offer what is called habilitative therapy, which would provide your child with uncapped therapy sessions.

Lia: So habilitative services are something to definitely take into consideration, I know that it personally affected us and our ability to give our child the different therapies that she needed. So our kids both needed occupational and speech, and one of them also needed physical therapy. And initially, we had our child going into physical therapy weekly for a couple of months. But we quickly burned through a 12, I believe it was a 12 appointment limit from our health insurance. And for some reason, that one did not qualify, because I guess the physical disability portion of autism somehow doesn’t count, I don’t know, at least for our insurance, it didn’t count. So we were not able to get her qualified for habilitative for that. However, with occupational and speech therapy, we were able to get qualified as habilitative. And so she has an unlimited number for those services. So we have had no problem with those. So again, I would stress, take a look specifically at your health insurance policies, if you do have health insurance, the easiest thing is just to call someone up and talk to them and they will typically walk you through everything you qualify for. The other thing that we ended up doing that really helped us out was honestly figuring out a budget and lifestyle adjustments in order to be able to go ahead and make some of these co-pays. I know that oftentimes that’s pretty difficult for people to do but I think in many cases, it’s actually possible to do.

Matt: Right, I think your number one goal should basically be to make a budget and try your best to stay out of debt and not go into that route. For us, we had to calculate with our insurance, how much we’re paying for co-pays, and how expensive each week would be for the various therapies that we’d have to go through.

Lia: Yeah, and I know, it’s totally realistic that sometimes you just simply won’t be able to afford some of these therapies, sometimes you just got to make the difficult decision to cut things out, rather than put yourself in a lot of debt by taking out a loan. So what we ended up having to do is put together a list of what all of our children’s difficulties were and prioritize them. So we spoke with our therapists. It’s something that you want to do closely with those therapists because they have a lot of insight on where your child is at that point in time and where their strengths and weaknesses are. So we essentially put together a list of all the therapies our kids were going through, and we prioritize them, which of these therapies absolutely is necessary, and they absolutely need to go because they would suffer the consequences if they didn’t versus which of these therapies are nicer to have, but not essential because she’s doing pretty okay in that general area. So for us, that area was physical therapy; we had seen a lot of progress in our child and although she would have still benefited from continuing physical therapy, we worked really closely with our great physical therapist, and she was able to give us some recommendations on things we could do at home that would essentially do the same thing without having to bring her to physical therapy. So for example, we purchased a bounce house to help her work on her jumping skills because she was delayed in that area. So there are different things like that, that you can do to accommodate that and make up for the lack of that therapy, and still be very cautious about your spending on the therapies. But again, I would advise against taking out any sort of loans because those things tend to get really difficult to pay back, and it just kind of snowballs into a financial mishap. So we just budget what we need to do as best as possible. And if there are no grants or anything else that can help us fund it, we ultimately just try to trim the fat wherever we can, and just get our kids prioritizations on their absolute essential needs.

Matt: Another option is for the families out there, if you do have a two-income household, both you and your spouse could potentially both pick up insurance plans, and then you would have double coverage which would ultimately help with the therapies and extend your current cap of how long you’re able to go for your therapies. For our physical therapy, I believe it was 12 sessions per insurance. And I think using both of them, we were able to extend it a little bit further. But it definitely helps. I mean, anything you can do to try and push it a little bit further trying to get a little bit more therapy, a little bit more service, you might be paying a little bit more obviously for two insurances rather than trying to have one cover the entire family, but it is another option if that is possible for your family.

Lia: Yeah, that’s definitely something I would consider. Because I know for us, we initially only had one insurance through my employment. But then we took a look at the bills that were coming in and we decided that it actually would be worth it to pay a little more a month for dual insurance in order to be able to cover more of these therapy sessions. So if you are a dual-income home, that would be a great recommendation for you. Now for those of you who are maybe in a single income household, or maybe you’re a single parent, and you only have one income because of that, or if you have government assistance, those are the things you may want to start looking into in terms of government financial assistance programs and things that we’ve mentioned earlier like the waivers, SSI, all those options that we mentioned in this episode that would probably help you out the most. And another thing you might want to consider is just to do a little bit of Googling, there’s a lot of random little programs out there that aren’t really advertised well. There are things like Autism Escapes, that’s a program that helps arrange air travel for families in need of medical care for their children. There are things like Danny’s Wish iPads for autism, which is a program where there’s a lottery to win an iPad for your child for things like the adaptive communication system. There are other programs like that all over the internet that you can look for, a lot of iPad for kids programs, and other services that provide you specific items that your child may or may not need. This may require a little bit of Googling, I would look into autism charities, autism grants, maybe something like autism Family Grant, Google those key phrases and see what comes up in your area. Because there’s a lot of things that are available, including scholarships for education, scholarships for going to summer camps, tutoring, those sorts of resources. There’s a lot of things available, but they do require a little bit of digging.

Matt: We actually run a small charity initiative as well. This podcast is sponsored by Autism Wish, which ultimately grants autistic children with sensory and therapeutic items.

Lia: We are a service that connects sponsors with children and the sponsors, we refer to them as heroes, essentially grant items off of the child’s Amazon wishlist. So these items need to be therapeutic, sensory, or special interest based, and it’s kind of an ongoing thing that we’ve been working on. If you want more information on that, just go to www.autismwish.org. Or you can follow us on Facebook at facebook.com/AutismWish [sic] and instagram.com/autismwish, youtube.com/@autismwish].

Matt: Now, we’ve gone through a lot of different programs here today. And I really encourage you to look into each of these and see which would be the best fit for you and for your child. I also want to stress the importance of getting your finances in order before you take action — most importantly, because it also results in your family’s mental health.

Lia: To elaborate on that, mental health is really important here. And as we mentioned earlier, in this podcast episode, finances are tied heavily into the mental health impact on families with autistic children and adults. So we just want you to get ahead of that curve and just think about that when you’re dealing with the financial situation. And just make sure that you try to take all these resources that we provide, and really look into them. Go to these websites, take a look at what your specific state provides. Take a look at what your local community provides and really read closely and get up to date with everything that’s available and offered to you because this is just very generic, overarching, but there are probably more specific available resources for you. And if you feel like you’re stuck, just reach out to a local social worker, they tend to have a lot of information on these sorts of financial support systems. They will be your go-to person if you have any questions or you want to continue to look and see if there’s any specific stuff in your community that we haven’t mentioned here, the social worker would be the best person for that. So I would encourage you to reach out and speak with them. Usually, you can get connected to one through your public school system or perhaps even through the person that diagnosed your child.

Matt: Well, that’s all for today, we hope that we were able to provide some financial resources for you to get your point in the right direction.

Outro:
Lia: To recap, in this episode, we discussed both state and federal funding to include things such as Medicaid, SSI, SSI, SSDI, and other opportunities for financial support. Thanks for listening to Embracing Autism. Join us next time as we discuss how to navigate the world of autism therapies and answer questions such as ‘What are common therapies for autism spectrum disorder?’ ‘What do I do if my child hates therapy?’ And ‘how do I fit therapy into my busy schedule?’ Tune in next time to Embracing Autism.

References:
IEP: Guide to the Individualized Education Program
What is an IEP?
Writing the IFSP for Your Child
Individualized Family Service Plan (IFSP) – PACER Center
What is an IFSP?
Individuals with Disabilities Education Act (IDEA)
IDEA – NCLD
Free Appropriate Public Education (FAPE)
Medicaid.gov: the official U.S. government site for Medicare | Medicaid
Adult Autism Waiver (AAW)
Department of Developmental Disabilities
Social Security Administration | USAGov
Supplemental Security Income
Welcome to Benefits.gov | Benefits.gov
Office of Head Start (OHS)
Welcome to Benefits.gov | Benefits.gov
Vouchers for People with Disabilities – HUD | HUD.gov
Low Intensity Support Services (LISS)
State Health Departments | USAGov
Regional Offices​ – The DDA
State Agencies I/DD
Autism Escapes (Travel)
Danny’s Wish (iPads for Autism)
AutismWish – Granting Wishes to Children on the Spectrum & Providing Parent Resources
What is “Early Intervention” and is my child eligible?