Transcript: Home Care for Children with Severe Disabilities

JENN: Welcome to New Hampshire Family Voices podcast. I’m Jenn Pineo, and I’m here today talking with Terry Ohlson-Martin, one of the Co-Directors of New Hampshire Family Voices, about applying for Katie Beckett Medicaid. Let’s jump right into the first question. What is Katie Beckett Medicaid?

TERRY: It’s really an eligibility pathway to Medicaid. And by that I mean it was established to give families who are over income for Medicaid a way to get the financial supports that they needed to take care of their kids with special medical needs. Very often families have had private insurance, but it didn’t cover the breadth of the services that they needed for their kiddos, especially without going bankrupt, or you know, having really extreme financial issues. So Katie Beckett made it possible for families to get those additional services.

JENN: Sometimes I’ve heard people refer to it as HCCSD. Why do they do that and what does that mean?

TERRY: Well, HCCSD is the real name that New Hampshire used when they got approval from CMS to use this particular eligibility pathway, and it stands for Home Care for Children with Severe Disabilities. For a long time we were asked to call it HCCSD, but families continued to call it Katie Beckett, and so the idea has kind of switched, and people can call it either one, and professionals and families know what they both mean usually.

JENN: Do you have to apply for social security in order to get Katie Beckett?

TERRY: No, not in New Hampshire. The two aren’t linked. As you might imagine, many times families who have applied for Katie Beckett as a secondary insurance, they would be over-income for SSI, so it’s not necessary for them to apply. SSI is based on parent income where Katie Beckett is not.

JENN: Are there other financial guidelines for Katie Beckett?

TERRY: Well, the most important one is that a parent’s income and resources don’t count at all, but what does count is the child’s income and resources, and a lot of times when you say that to families they think well, of course, my child doesn’t have any income. But if you have child support for that child, that’s considered income. Resources can be a bank account that Grandma set up for them, or that you’ve been putting all of their Christmas and birthday money in. Those are resources. So you really have to give it a little bit more thought than instead of just assuming that well, no I don’t have any income for my child because he doesn’t work.

JENN: Are there other requirements beyond the financial stuff to be eligible for Katie Beckett?

TERRY: Absolutely, and that’s the medical side of things. A child needs to be what we call institutional level of care to qualify for Katie Beckett. Explaining that definition can get complicated, but generally what it means is that the child needs 24 hour care. The way I often think about it is if something happened to me, where would my child go? Would the child most likely end up in a more restrictive setting, at an institutional kind of setting? But it can be complicated to figure that out, so if somebody had some questions, and they wanted to kind of talk it through they can call our office. We don’t, by any means, make decisions based on whether or not somebody applies, but we can give you a feel for what they’re looking for. And if it’s questionable and you’re kind of on the cusp of do I or don’t I qualify, then apply.

JENN: You said something earlier about families who already have private insurance. Is that always the case with Katie Beckett?

TERRY: No, it’s not. It just – that was kind of the impetus behind getting Katie Beckett, but you don’t have to have any other insurance in order to apply for Katie Beckett Medicaid.

JENN: If I already have Medicaid, why would I apply for Katie Beckett? Do I get more services?

TERRY: No, that is a misconception. You don’t get any more services because you have Katie Beckett. The reason that you might want to apply for Katie Beckett, if you already have Medicaid, maybe you know you’re going to have an income change, you just got that new dream job and you’re income is going to double or something. That would be a time when you may want to go to Katie Beckett. Or if, you know, you have a new family member and he’s making a lot of money, or she’s making a lot of money, that’s going to change things. The other option is if your – or the other option – the other time would be if you’re applying for in-home supports through an area agency, a lot of times they’ll encourage you to apply for Katie Beckett. In looking at it I’ve kind of figured out that they are probably doing this because the eligibility pathway for in-home supports is really pretty similar to that of HCCSD. But the legislation doesn’t require you to have HCCSG – HCCSD, sorry. But it does require you to have Medicaid, but remember that because you have Katie Beckett it doesn’t mean you’re automatically going to get in-home supports. They are not linked. They have similarities, but they’re not the same.

JENN: I know when you apply for most programs you have a lot of paperwork to do. What does a family need to have to apply for Katie Beckett?

TERRY: Well, there is a lot of paperwork, but it’s manageable. And there are quite a few documents that you need in order to apply. We have a list of them at the office, so if you want to give us a call we can send that to you. It’s things – standard things like your birth certificate, or the child’s birth certificate, their social security card, medical records, their IEP, all those sorts of things. But the one thing I would want to say is when you look at that list and it says “Medical Records,” don’t send, you know, your child is ten years old, so you want to send ten years worth of records so that they get the full idea, that’s not what they’re looking for. They’re looking for records from the last year. The significance of this previous year is really what helps to determine whether or not they’re eligible.

JENN: So if I – if a family decides to apply for Katie Beckett, how do they do that?

TERRY: Well you actually have a few options, and each option has its pros and cons. So let me go through each of them. First one is you could always make an appointment at your local district office. Go down there and fill out the paperwork. The good thing about that is it means you get the opportunity to talk to a Case Tech, find out if there are any other programs that you might qualify. If you’re new to the state, or if you’re looking for other assistance, this could be really beneficial. However, if you know you only want to apply for Katie Beckett, and you don’t have the time to go into the office, you can also apply by going to New Hampshire Easy dot gov ( The thing that I would remind people about when they do that is when you go in and you start to fill that out, you have to fill it all in that day, because if it’s not done by midnight it gets erased and you have to start over again, so keep that in mind. The other thing is once you’ve completed it you will get some additional forms in the mail that have to be completed, and you have to send them back. And they’ll be a timeline on that. You may also get a call about doing an interview. The interview could be a phone call or they could ask you to come down to the office. The third option is to call our office and ask for an HCCSD packet. We’ve put together all of the forms and some tip sheets that kind of help you walk through it, and we will send you that. That then gets mailed to the district office, and you may still get a followup phone call where they want to do either an in-face interview or a phone interview. No matter which way you decide to apply you’re always welcome to call the New Hampshire Family Voices office. We can help you if you get stuck in filling out a portion, or you have questions about things. We’re more than help you – happy to help you get through the process no matter which way you choose.

JENN: What if I apply and they tell me we’re not eligible, and I disagree, and I really think my kid should have qualified? How – what can I do?

TERRY: You can always appeal the decision made by Medicaid. When you receive your denial they’ll be some paperwork in it that tells you how to do that. Make sure you pay really close attention to that because there is a timeline, and you need to make sure that you follow it. But I would caution you if you’re convinced that your child is eligible to look back at what you submitted, and to see if there’s a gap. If maybe there was something that you didn’t think to send in, or that they didn’t get that they should have gotten, to help influence the decision.

JENN: What happens if I don’t qualify for Katie Beckett? Can you apply again later?

TERRY: You certainly can. You can apply as many times as you want. And really the thing to keep in mind is our kids change over time. So while I may have a child with a diagnosis that I’m fairly sure they’re going to qualify for, maybe at the age of 18 months they really don’t look that different than their peers, and they’re not having a lot of medical issues, but you can anticipate they’re going to in the future, when those things start to arise you may want to reconsider and apply again. But you can apply as many times as you want. It’s all about whether or not you’ve got the stamina to keep filling out the paperwork.

JENN: So that’s all the questions I have for today. Thank you, Terry. This has been really informative. If anyone has any questions, please give our office a call at 271-4525 or check out our website at NHFV dot org (, and look for more podcasts from New Hampshire Family Voices.