Beyond the Friedreich's Ataxia Basics

I work with families that are caring for somebody with a disability of some sort, because of my own passion and my own background, but what we find is that a lot of us have a plan, but the plan is up here, and if the plan is up here, if anything happens to us, nobody knows what that plan should be. So it’s very, very difficult to have these discussions, but we don’t just speak about money; we speak about a team, we speak about a meeting that you can really sit down with your family or your network, as Matt had described, you know, the team that helps him get through the day — the physicians, the social workers, the caregivers, whoever it is that works with you and helps you or can be there as a resource for you. Those are really the people that you need to sit down and make a plan with.

It’s not just about the money and how to fund things; it’s about what if something happens to me with my son? It was always, who’s going to step in? Who’s going to do the things that I do for him? Or what’s my plan if I’m not here? And it’s a difficult conversation, but it’s a conversation, whether you have a disability or not, that we should be having as parents and caregivers so that there’s never that absence.

We saw during COVID that so many families didn’t have a conversation and were kind of left up in the air about what should I do? How should I handle this? So it’s having some plan in place, whether it’s writing it down or putting it in a will or wherever you need to put it. But letting somebody else know that it’s not just up here; it’s written down somewhere.

Esther: So just for clarity’s sake, for those listening, you’re talking about a longer term financial plan.

Andrew: Not only financial.

Esther: No, an overall plan, but especially since we’re now talking a little bit more about the financial side of things, what are some of the questions that the family, patient, care partner should be asking themselves as they put that plan together? What are the components?

Kelly: Well, some of the components are: Where will I live? Who will I live with, who will care for me, and how will that be paid? There are many people that have health insurance that can cover that. And then there are other people that do and will qualify for government benefits. Just because you have assets in this country, it doesn’t mean that you won’t qualify for government benefits. So prior to the age of 18, you’re obviously under your parents’ health insurance, and even up until the age of 26.

But in this country, your person over the age of 18, if they don’t have anything in their name, they can qualify for government benefits, so that could be a child that lives with their parents — an adult child that doesn’t have a checking account, doesn’t have a savings account with assets over $2,000. They can qualify for every government benefit that’s out there, and they can have something called a special needs trust or enable account. And those are some ways in which people with disabilities can put money away and not get disqualified.

Now, if someone works, they may not be eligible for all the government benefits at this point, but as things progress, there are government benefits that could and would be available to them. So it’s having a plan in place, but knowing there’s resources that you can check into. If you’re employed, it could be one track, but if you’re no longer employed and you need disability, you can go to the government; you can speak to them about what you have or what you don’t have, and they can show you, you know, exactly what you would qualify for.

So it’s having a plan of what your quality of life looks like, who’s going to pay for it, and if it’s not going to be paid for, what exactly is available to you? And those are some of the resources that the government can help you with. Local nonprofits help our families, but for the most part, it’s having that conversation about what are they eligible for.

Now somebody that could be 30 years old could be living with their parents in a household that has a lot of money. It’s not based on that person’s household; it’s based on the individual, not the family. So you always want to keep that in mind. But for someone older that’s worked; it’s on their work history; it’s on what they currently have in the bank and what they need. And that’s what the government steps in as well. But it’s really looking at all of your benefits, your life insurance policies.

If you have a life insurance policy that has a child, one of your children, like in my case, I had four and my son Nicholas couldn’t be left money straight out because he had a disability. So we had to leave money for him to a special needs trust. But those are just some of the things that families can do. And it’s not for children; it can also be for adults as well.

Esther: Yeah, that’s a lot of information.

Kelly: It’s a ton of information.

Esther: No no no. But it’s great. So I’m just going to get a little bit more granular and ask you, you know, are there assistance — you referred to there being governmental assistance programs — are there any assistance programs for adaptive equipment or caregiving that people can look into? Because, you know, you talk about insurance, sure. Insurance doesn’t always cover those kinds of things. So where would you go if you need equipment or to have a full-time caregiver, for example?

Kelly: Right. I mean, we know that some insurance companies — I knew myself — did cover some adaptive equipment, but there are, you know, resources through the government if you qualify and they will help you with caregiving — 24/7 RNs LPNs, whatever you may need, or just a caregiver to give the family a little bit of a break, or give the person with a disability a break and send someone in to help them.

You can also look into local nonprofits. They do provide resources and information for families regarding mobility. There are some nonprofits that will even assist if a family needs to make modifications to the home. There are some insurance companies that will cover that, as long as it’s for the benefit of the person living in the home.

If a person has a special needs trust, or a trust has been funded on their behalf, that would be considered a qualified disability expense, and those resources could be used for those modifications as well, as well as nursing or anything else that’s not covered. So if somebody leaves an individual with a disability money into a special needs trust, those funds can be used for the person with the disability to improve the quality of their life.

Esther: OK, Andrew, you have a question?

Andrew: I do, we spoke earlier and I think gives people a lot of hope, Dr. Lynch was talking about many of his patients who are working. And so if they’re working, can they still draw in some assistance or then if they decide not to work anymore, how does that switch? So how about when they’re working and when they decide …?

Kelly: When they’re working, they’re not going to qualify for a lot, depending on how much they make. If they make a certain amount, they will not qualify for government benefits. But if they have a disability and it prevents them from working, they can go to the government and the government will help supplement that income. That is something that they can consider. Every case is different. So people say to me, Kelly, how much can they get?

It really depends on your household. And you can have a conversation with the Social Security office. They do a lot of the meetings now on Zoom, so you don’t have to drag in there and wait in lines like they used to have. You can set up an appointment, and it’s definitely much more friendly to our families, so you can speak with them and see what you are eligible for. So that’s something that they can do.

But because you’ve worked your whole life, doesn’t mean you have to spend down every single asset to get government benefits. There could be something there that the person is eligible for.

Esther: OK, I want to ask Matt and then Kendall, what have you found most helpful when it comes to managing finances related to FA? And, you know, what are some of the resources that have been helpful to you? Because I know Kelly’s gone through a whole lot of different possibilities, and you’re each in a different, a different scenario of family and support. So maybe, Matt, can you talk to that?

Matt: Sure. Absolutely. I bow down to Kelly. Kelly, you have a lot more knowledge than me, especially in this area.

Esther: More than all of us.

Matt: What I was doing when I first was looking into going to college, I did a quick internet search on disability services in my state, Louisiana, and I was surprised at how much, even in my little state, was available to me. So I encourage everybody to look up disability services in your state or in your country and seeing what’s available that way, because I think that was a big help for me in going to college and getting transportation and things like that, that I didn’t know was available to me.

Andrew: And what about some of the equipment you use, the adaptive equipment. Have you gotten assistance with that?

Matt: Yeah, yeah, I use a wheelchair. I’m a full-time wheelchair user. So my wheelchairs were completely paid for by the program in Louisiana, so I’m really grateful for that. They helped me pay for a motorized wheelchair when I went to college, and now around the house I use a manual chair, so they provided that for me. So there are features out there that I didn’t even know about. So I’m really grateful that they’re out there. So I encourage everybody to take a look at what’s available to you, because, like me, you might be surprised.

Esther: Yeah, I was going to say, if you don’t ask, you won’t find out. So don’t be afraid to ask, right? Kendall, how about you? What are some …?

Kendall: Unfortunately, I have no knowledge to impart on this topic. I’m ignorant about what my options are, so I’m taking passionate notes.

Esther: Fair enough.

Andrew: You know, one thing we should say along the way about Kendall and Matt — and many of you in the audience may already know this — but they are very ingrained in the community. We mentioned about the newsletter they write for. They’re involved in the nonprofits. They’re very involved, and so they know they’re not alone but also there’s a lot of information sharing. So, you know, if there’s something that comes up for Kendall, there are people who’ve been down the road before you who can help — experts like we have Kelly with us — or even the government and government counselors. So don’t be hesitant. And if anything, know that you’re not alone. And there are people who’ve been down this road before you.

Kelly: And, Andrew, can I just add one thing there, please? There are over 700 waiver programs across the country. They are not all means-based. So some, if you have assets and you have money, you could qualify for them. So everything is really state-specific. So to Matt’s point, Matt, I’m glad you had a good experience in Louisiana. That’s not one of our top states for services, but I can tell you I’m glad to hear it. I’m in New Jersey, which stinks, but the top states in the country would be Massachusetts, California, New York. They offer great supports and services for people with disabilities, but across the country, there are state programs and disability programs that you could find even if you have assets. So I don’t want people to believe if they have money or they work their whole life and they have a disability, they’re not entitled to anything. They could be. So it’s really getting out there. And if you have someone that needs assistance or help, we are happy to help them as well.

Esther: Thank you so much.

Kelly: Kendall, that’s for you.

Andrew: OK, so we’ve talked about the broad brush of your needs as someone living with FA. But also earlier in the program, we talked about a new drug. And so now if you’re not receiving that drug, but maybe it’s right for you, you’re going to say, well, that drug is probably not inexpensive; how do I get it? Is there support for me? So listen carefully. The company that makes that drug available is called Biogen. And they have a program that’s called Reach; it’s actually known as Reata Reach. The website is reatareach.com/patient. But it’s the Reach program. And you can find more information; your doctor will need to fill out some forms, get you started. But then there’s a dialogue about whether there can be assistance to you, depending upon your situation, to get a prescription for Skyclarys, or omav, I think it is, as Dr. Lynch was calling it.

Esther: Once that gets started, after that, a care navigator gets involved and will work with you and your healthcare team to first figure out if you’re eligible and then help you get your prescription in a fast, easy, and affordable way.

Andrew: Right. So you want to find out about the Reach program. All right. And we’ll make sure you have information about it.