PIC/Family Voices Podcast Episode 21: Understanding Paid Caregiving: PCA, LNA, and Stipend Options Explained

Emily Woodward (00:01.878)
Hi everyone, today we are here to discuss several pathways in New Hampshire that are commonly referred to as paid caregiver options. To clarify, a paid caregiver is an individual, often a family member or legal guardian, who is compensated for providing Medicaid billable services to a family member who is eligible to receive those services. Depending on an individual’s eligibility and needs, paid caregiver opportunities may be available through Medicaid waiver programs or home health agencies.
These options provide needed flexibility for families as well as continuity of care and support in meeting the needs of their loved ones. Today we’ll be exploring three important care options available to individuals and families: personal care attendants, PCA, licensed nursing assistants, LNA, and stipend-based care programs. Today’s guests will be Deana Taylor, Jenn Baker, and Michele Caswell, who will walk us through these options.  Deana is the parent of two boys who openly shares her caregiving journey. Despite the recent loss of son Abel, she continues to support other families navigating the New Hampshire systems that serve families who have children with disabilities and special health care needs through her work at New Hampshire Family Voices. Jenn is a parent of three children on the autism spectrum. She has navigated the developmental disability system for almost two decades. She has volunteered on area agency boards, family councils, and other councils. To share the family perspective and support families to navigate the systems through her work at New Hampshire Family Voices. Michele and her wife have been fostering children with special medical needs for many years. They have adopted six amazing children and are currently fostering a very special little one. Michele is actively involved in the foster care community, the disability community, and serves as a parent member on the New Hampshire Council for Youth with Chronic Conditions. Welcome, Deana, Jenn, and Michele.
 
Emily Woodward (02:05.558)
To start us off today, which paid caregiver program do you currently utilize? There is the PCA, LNA, or stipend option. And could you tell us a little bit about the general specifics about each program and what factors influence your choice and choosing? Deana, would you mind starting us off there?
 
Deana- NHFV (02:29.208)
Good morning. Thanks for having me. This is Deana, and I utilized the PCA program or personal care attendant program. I chose that program to work for our specific needs. I wasn’t able to attempt getting an LNA license as my child was homebound, and we didn’t have enough nursing support for me to attend those classes. Based on that decision of utilizing the personal care attendant program, my role revolved around full support with hands-on care in the home and support with activities of daily living, such as dressing, bathing, toileting, meals, laundry.

Jenn Baker (03:31.035)
Thanks, Deana, so our family utilizes what’s called the in-home support waiver, and we get the parents stipend for that. So, this is through the area agency. Your local area agencies are the ones that oversee that program and support families to access it. So, for that we develop goals that are based on, you know, being out in the community or, you know, cooking or it can be a variety of different goals. The in-home support waiver is for children under twenty-one that are still within the school system. 
 
Michele Caswell (04:27.187)
This is Michele. I am going to talk about the licensed nursing assistant program or LNA program, which can be utilized through several different home nursing agencies. Specifically, I use Team Select. I had kind of already been established with Team Select for some other children in my home who were receiving private duty nursing, and it was a pretty easy transition for me to jump on board as an LNA. I already had my LNA license so I was able to work pretty closely with them to determine the eligibility for some of my children and begin being a paid parent caregiver for them rather than utilizing and depending on other staff, which you know, can prove to be quite a challenge at times.
 
Emily Woodward (05:20.16)
Thank you so much for talking to us about those three programs and the information regarding each of those. Can you talk a little bit to us about what your roles are as a paid caregiver and provider? Starting with you, Deana, please.
 
Deana- NHFV (05:46.424)
So we had nursing, private duty nursing coming in, despite working with multiple home care agencies to staff the needs of our child. It was the care was either unreliable and the hours were unable to be filled. So we really leaned into the PCA program. Our child was found medically eligible for the hands-on care needs and it really helped offset the hours that we were doing 24-7 care by ourselves.  The choice for us was we really didn’t want to be our child’s paid caregiver. We would prefer to have nursing coming into the home to meet the needs of around the clock hands-on care. But given that we were working with so many agencies for so many years, and having those needs not be met consistently, it really was a helpful program for us to utilize and access to remain safely in the home.
 
Jenn Baker (07:23.043)
This is Jenn for in-home support, so, we were already on the in-home support waiver. Two out of my three children access that waiver, and so we moved over to the paired paid caregiver when we didn’t have staff. So, we have a service agreement that’s developed for each of the children each year, and we work on specific goals. They’re usually two or three pretty broad goals so that we have flexibility to work on different things. We do have some pretty defined times when we’re doing that paired caregiving because we’re already blurring that line between being a paired paid provider and being parents. So that can be a little bit challenging for us on this waiver.
 
Emily Woodward (08:25.45)
Michele, can you add your perspective for your specific case?
 
Michele Caswell (08:31.411)
Sure. This is Michele with the LNA program. My case is unique in the fact that I had children in my home who required private duty nursing. So we established care with the nursing agency, with registered nurses and the director of nursing had approached me and asked me if I wanted to be a paid parent caregiver for some of my children. which I had previously worked in home care with that company caring for other patients. So it was just a pretty smooth transition into being a paid parent caregiver with kind of the support of the registered nurses in the home as well as the director of nursing and the nurse care managers kind of working together as a team to make sure, you know, the lines weren’t blurred and things were met according to the standards.
 
Emily Woodward (09:36.362)
Thank you. Deana, can you talk about what motivated you to become the paid caregiver for your child?
 
Deana- NHFV (09:46.381)
This is Deana and I opted to do the personal care attendant program for my child. I given the fact that finding home care staffing was very inconsistent. You know, we would go weeks with coverage, months without coverage, and it, the dependability and reliability working with multiple agencies to staff the case was just something that was not consistent for us for many years. I emotionally had a really difficult time being my child’s paid caregiver. I would have preferred to have LPNs and RNs coming in to be my child’s paid caregiver from a medical necessary standpoint. I really just wanted to be mom. And so that was that was a difficult piece of it for me was sort of separating the autonomy of being a parent and knowing that the hands-on care that my child needed was something that was truly burning me out. So that that was a little bit of a difficult piece for me to try to wrap myself around as a mom. I just wanted to be a mom.
 
Jenn Baker (11:24.919)
This is Jenn for in-home support. I’m very similar to Deana. I honestly never wanted to be the paid caregiver. I’d prefer to have support. I also just wanted to be, you know, mom, and we’ve always tried to keep a very clear line between being a service provider and being parent, grandparent, whatever relationship it was. And we’ve worked really hard on that since my oldest, who’s about to turn 22, was in early supports and services. However, for us, we went about a year without any support staff, so that kind of pushed us into doing this. Part of that was us wanting to ensure that we had what we needed for support and that it was documented in a very clear way, especially as my oldest was planning for that transition into the adult waiver program. I know for some families like not having consistent support staff can in impact their employment. And I know for some that’s the reason that they choose this option.
 
Michele Caswell (12:42.843)
This is Michele for the LNA program. For me, again, my situation is unique. I was finding myself unable to work outside of the home due to the nature of the children we were caring for as foster and adoptive parents. So, we had reached out to the nursing agency for private duty nursing for one of our foster children specifically and they approached me with the idea of LNA services for some of the children. We did try having other LNA’s come into the home to work with some of the children, but based on their level of trauma and just kind of unique needs being in the foster care system at some point in their lives and then adopted, it just made sense for me to jump on board as their LNA and care for them. I was already here. I was already doing the work. Is it ideal? No, I do, you know, find myself needing a break and caregiver burnout is a true thing. At the end of the day I’m their mom, but getting paid to support them with some of these extra needs that aren’t you know, you can’t leave them with a babysitter, you can’t do things and provide that little bit of income it works out at the end of the day.
 
Emily Woodward (14:06.474)
Thank you all for all that information. We’ve heard a little bit about the waiver programs. Can you tell us a little bit about the eligibility process for the program you use, starting with Deana?
 
Deana- NHFV (14:21.399)
This is Deana for the PCA program or personal care attendant program. I utilized that option through Granite State Independent Living. The intake was done in our house based on the level of hands-on care needs that my child had. The assessment was then sent off to insurance for approval or denial in those o hours that were authorized for us was helpful at the time when we didn’t have other providers coming into the home as a billable service. One thing that is notable with the eligibility and program itself for the PCA program is that this this is a program that does affect household income. And so I think that’s important knowledge for families to understand that if they are on household based income for New Hampshire Medicaid, that your household income as an employee for your child through the PCA program will affect your household income.
 
Jenn Baker (15:54.767)
This is Jenn for IHS. So, a couple things about the IHS paid parent stipend. It’s a stipend. So first to talk a little bit to address kind of Deana’s thing around income. It’s not currently considered taxable income. That being said, we’re not employees of the area agency that does the waiver. So what typically happens is we put in our paperwork for the month at the beginning of the month and then you get a monthly stipend typically, in the middle of the month, every area agency might have a little bit different way that they do this. So it’s not like a weekly paycheck. It is truly a monthly stipend. So kind of getting that set up and rolling can take a little bit of time. You do have to have Medicaid to access the waiver. That is how it is paid for. So, when we say Medicaid waiver, I just really want to quickly say Medicaid is Medicaid is Medicaid. So everyone that’s eligible for Medicaid is eligible for a certain amount of services. The in-home support waiver is a place where the state is asked to waive some of that and give eligibility to a certain population for something. So for under 21 for our kids, it’s the in-home support waiver. So you have to be eligible for Medicaid and then you have to go through what’s called LTS if you’re looking at New Hampshire Easy and go through that process to get approved and then going through and getting your budget and doing all that needs to be approved by BDS. So if you’re not already within the in-home support waiver system, that’s something that has to be done before you can start.
 
Jenn Baker (18:00.561)
Area agencies will follow the same general process, however, the paperwork might be a little bit different. So I would say to families, like talk to your in-home support case manager, or if you’re not already connected to in-home support, your family support coordinator to do that. We did have to do a background check, and they do the Bureau of Adult and Aging Services background check. And we had a little bit of human rights training that we had to do. And the other thing I want to say is as far as eligibility, you can also do a part where if you have someone that can be staffed for only a few hours, you can have staffing and the stipend, though your case manager will help you figure that out. So, there are kind of some different options and ways to become eligible and access the program.
 
Deana- NHFV (18:57.129)
This is Deana, and I just wanted to echo with what Jen said when she’s saying LTS, long-term supports and services, needs to be in place with Medicaid to access that waiver through the area agency for those specific waivers like the in-home support waiver. And when Jenn’s saying BDS, she’s talking about the Bureau of Developmental Services.
 
Michele Caswell (19:35.951)
Hi, it’s Michele with the LNA program. For eligibility for LNA services in the home, it was actually a pretty easy process. We already had an established relationship with the nursing agency, so we chose that nursing agency. They did all the legwork, they contacted insurance, our children because they’re foster or adopted, all have Medicaid through their foster care or adoption agreements, and honestly it was a pretty seamless process to get them found eligible and because I was already in LNA I just had to go through the onboarding process. you are an employee of the nursing agency, you have to follow their trainings, you have to follow their regulations and complete their charting or paperwork that they require. But, it was actually a pretty seamless process. The nursing agency we use specifically is Team Select and they have some fantastic office staff that kind of walked us through the process pretty pretty simply and pretty quickly.
 
Deana- NHFV (20:41.611)
Michele, this is Deana. I have a question about the LNA program. Does that affect household income being an employee through a nursing agency?
 
Michele Caswell (20:53.349)
It does, it does count as income.
 
Deana- NHFV (20:57.835)
That might be important for families to know if the family is accessing New Hampshire Medicaid through household size and income. And I just think that’s important to mention.
 
Michele Caswell (21:08.243)
Sure, absolutely. Our family again is unique because our kiddos don’t depend on the income circumstances for their Medicaid, but other families absolutely.
 
Emily Woodward (21:23.552)
Great. Thank you, Deana, Michele, and Jenn for the information just now regarding the waivers. If you were looking back on this process, what do you wish you had known about the eligibility process before you began? And what guidance would you share with other families who might be considering this option?

Jenn Baker (23:19.023)
So, I’m gonna answer this kind of in two parts. So for the in-home support waiver in general, when we started it years ago, I will say it took me a little bit to get there to want to do it for a couple of reasons. One, at the time I had an amazing family support coordinator that I did not want to let go of, even though they’re still a little bit involved, because it would mean moving to a different case manager. And this person was a huge support for our family. So it took me a little bit to even consider in-home support in general in doing it. In-home support prior to this, to recently, it was what’s considered family directed, meaning the family is the one if you’re hiring staff, you’re supporting them in training, you’re making sure they’re getting their paperwork in, you’re doing all the supervision. There’s a lot of involvement in that. So even if you’re not getting the paid stipend, you are doing a lot of work as a family member, making sure the paperwork’s in there, you know, helping to kind of do all that. So knowing about that process and what it looks like. I’m very familiar with the regulations, so I could ask different questions as things came up. And I’ll also say that every area agency sometimes their policies or procedures gets confused with what is an actual rule in the state. So being able to ask those questions, I wish I’d known earlier that I could ask those and try to understand that better.
 
Jenn Baker (25:18.193)
An example of that is we had one agency tell us we can only do a certain amount of mileage a day, which is not in fact in the rule anywhere. So you know, but that was their policy versus a rule, so having some understanding of that. When we went to the paid caregiver, it was really just understanding the difference in how the process worked, the difference in paperwork, you know, and having to get it in on time, like you couldn’t be late, that impacts other things. So just having to figure out a really good system to make sure you’re getting all that paperwork in on time and making sure of course Medicaid stays in play and all of that happens.
 
Michele Caswell (26:11.043)
This is Michele with the LNA program. The only kind of look back I have with the eligibility process is I didn’t realize it would be such a fight to keep the services. The insurance companies, we work with both Well Sense and New Hampshire Healthy Families in our home, and they’re constantly denying services or taking back what the children have been receiving. So that I probably if I knew things would look like this, I may have explored other programs for caregiving for them. 
 
Emily Woodward (27:00.96)
Thank you all. It’s really great hearing from all of you on the various perspectives since the three different programs seem to have various different elements. What part of the process would you say was the most challenging for you and your family, Deana?
 
Deana- NHFV (27:23.095)
Part of the process that was very difficult for us was that to prioritize my own well-being and mitigate caregiver burnout was that I really wanted to prioritize finding staff that could come into the home to do that service and be the provider that my child medically needed. So that piece was really difficult. I was able to sort of mitigate and manage some of that by staying on top of documentation and keeping up-to-date information for my child. I just use a file folder on my computer to stay up to date and update that document during recertification periods that occur with the PCA program for the oversight of the nurse that does the recertifications.
 
Jenn Baker (28:28.567)
This is Jenn. For in-home support, I would say like feeling it was challenging for us to feel like we were pushed into it. I’m super grateful that this opportunity is available. But as we’ve said before, for our family we want a clear line between providing service and being parents. So ensuring that we can have that there and have it in process. Also for us when we had staff for our family, they kind of came in and really became a part of that team and problem solving and different strategies. So we don’t have that other person to do that. And I’m sure a lot of parents can relate to your children act very differently with someone else than they do with you so having someone else to take them to a different place than we might go or to engage other people was helpful for us. Paperwork is always a challenge. I think many of us as parents would say we are buried in paperwork. And sometimes there’s no clear process for how you have to complete that paperwork. So something might change and by the time it gets down to you as the paid caregiver, you either have to go back and fix things or figure it out for us, not really challenging, but for in-home support, you are required your case manager has to come and do quarterly in-home visits and when they do that, they’re also they have additional paperwork that you have to do when they’re there. So for us, we have two children on this waiver, so we get twice the fun and twice the paperwork.
 
Jenn Baker (30:28.323)
Although I feel funny saying that now, knowing Michele has multiple, multiple children. But you know, having to do that. And sometimes some of the things we have to do are like surveys on satisfaction and not really seeing like where that’s going or how that is used to improve the system or if it really is. I find super challenging as someone that’s engaged in the system and wants to work to improve it. If you’re making me fill out a survey I would prefer to know where it went and what it’s going for. But yeah, it’s I think for us it goes back to as Deana said, like just wanting to be mom and do those parts of it and have another team member working with us.
 
Michele Caswell (31:17.891)
Michele with the LNA program here. I think for me, kind of the most challenging thing was dealing with a feeling of vulnerability and kind of admitting, yeah, you need support for these children. These are the programs that are available. Which way are we gonna go? This kind of fell naturally into us, but it would kind of be the same way if we chose a different program. So, for the LNA program, you can work six days a week, you know, X amount of hours, and the nursing agency is pushing you to do those hours. But sometimes I just want to be mom. I want to be able to drive my children somewhere, and if I’m on the clock, I can’t. Some days I need a break and I want one of my natural resources or supports to come into the home and help with the children. I don’t want to be on the clock that day and kind of advocating for myself against, you know, caregiver burnout, ’cause that is so real.
 
Emily Woodward (32:25.078)
Could you tell us what the role of the agency that you work with, starting with you, Deana?
 
Deana- NHFV (32:34.207)
This is Deana. For the PCA program, the role of the agency, for myself, I was an employee. And so, you know, you have to clock in, clock out, do documentation. And that was the role that I played as my child’s paid caregiver was I was an employee of the agency. And the agency’s responsibility was to offer support with the intake and making sure that updated medical information was available during recertification times to keep the program in place.
 
Jenn Baker (33:26.167)
This is Jenn for in-home support. So area agencies will be helping you develop the different goals that you’ll be working on. They use person-centered thinking, so really thinking about the child that’s being supported and figuring out those goals, and they should help with like brainstorming if there are different things or different you know.
 
Jenn Baker (33:57.988)
We should help with brainstorming and figuring out, you know, other things that might be helpful. So is it you know, padding in respite or mileage or different things to help you really figure out that budget and fit that in. They’ll also ensure that you’re still eligible for Medicaid. So if something happens with that and help you figure out the paperwork. And as I said, they’ll come in and do monthly visits. That’s a good time to kind of brainstorm and think about what’s coming up and what you need to think about. If my case manager is available, they will attend school meetings and support in that or just learn or just be there as a way to learn kind of what’s happening.
 
Michele Caswell (34:58.648)
It’s Michele for the LNA program. The office that I work with, the Team Select out of Salem office. The office staff are knowledgeable and compassionate and dedicated to make sure that these kids get what they need. So they work with the insurance companies, they work with the doctors. There’s very little that I had to do except clock in and clock out and do my paperwork and my trainings. They provide the trainings, they provide, they have the director of nursing, they have case management, they have RNs, all that are in and out of my home multiple times a month, just to kind of make sure all the kids get what they need. It’s been a pretty positive experience with Team Select specifically, but I’m hopeful that other agencies give that same experience.
 
Emily Woodward (35:53.856)
Michele, you were just talking about some training. So thank you so much for that. Deana and Jenn, I’d love to hear from you about training and resources and guidance that you have also received and how have those supports helped you provide care for your child. Deana, let’s start with you.
 
Deana- NHFV (36:47.905)
This is Deana for the PCA program. One of the notable resources for us was the ability to use an app on our phone so that we were making sure clocking in and clocking out was successful, and being able to see how many hours that we had worked that week and how many hours that we had left under that authorization was a helpful tool for us to utilize.
 
Jenn Baker (37:29.059)
I’d say for us it goes back to developing those goals, providing any guidance on if there are any changes coming up that might affect how we’re addressing goals or filling out the paperwork has been helpful.
 
Emily Woodward (37:56.33)
Thank you. If you could change one aspect of the current paid caregiving system or the supports available to families, what would it be and why?
 
Deana- NHFV (38:09.067)
This is Deana for the PCA program. I do want to echo that I wish the available options for being a paid caregiver were explained more to families as far as what the program looks like and the different options. While it’s a wonderful program that can be in place, I think it’s helpful for families to understand that there is options of having staff coming into the home instead of just being your child’s paid provider as you know the billable service is, you know, being able to identify those supports that are available outside of being my child’s paid caregiver.
 
Jenn Baker (39:11.919)
This is Jenn for in-home support. I think the system in general is ensuring that case managers, those that are direct support professionals are getting you know, reasonable pay, so that they want to go in this job, they can stay in this job and they can do it and ensuring that they’re getting the training and support that they need, so that they can do this job and do it well. It’s a complicated system with things constantly changing so just ensuring that everyone’s getting what they need, and I would always advocate for case managers and direct support professionals to get a higher rate of pay and for agencies to put that need first, and for families to get what they need the first time they ask. So I think a lot of times as families we feel like we have to ask a question on a Tuesday standing on one leg and it has to be a full moon and the planets need to be aligned for someone to either understand the question or be able to answer it. So that can be challenging and it can cause families to get different information.
 
Michele Caswell (40:46.407)
Michele with the LNA program. The one thing that I would change about this really has to do with the insurance and obtaining and maintaining adequate coverage and services for the children that they require they’ve been entitled to or they’ve been provided and then not having those taken away because of information, I don’t I honestly don’t know why things are taken away sometimes, but not having to fight and file appeal after appeal after appeal, do a state fair hearing, meet with countless people to advocate for what what your kids need. Things could be so much simpler if everybody just got what they needed.
 
Emily Woodward (41:54.08)
How do you prioritize your own well being while being a caregiver? I know that can be a challenge and I believe you were talking about that a little bit.
 
Deana- NHFV (42:05.249)
This is Deana, prioritizing my own well-being as a caregiver for the PCA program was for our family to continue to work with multiple agencies to try to just staff the level of care that my child needed. And despite using multiple agencies for years to try to get, you know, the coverage that we needed for our child was very difficult, and we were thankful to be able to lean into the PCA program, but to prioritize my own well-being, if I could make a dream home care staff for my child, it would have been to get the staff coming in from outside of our home so I could focus on my own well-being and really just channel the love and passion that I had for just being Abel’s mom.
 
Jenn Baker (43:42.831)
This is Jenn, for in home support. So I’ll be honest, this is a hard question and, you know, I struggle with answering it because I feel like you know my my identity is a mom, my identity is you know, also being the caregiver for these three children that have you know, drastically different needs and more needs than others. So I feel like we’re constantly on and trying to figure out how we do things. So I I think figuring out for us it’s been just figuring out those small moments where we can, you know, do things and and be goofy as a family or you know, figuring out strategies to be able to go different places and not and have strategies to make sure we don’t lose a child, we don’t, you know, someone doesn’t run off, someone doesn’t have a meltdown, they’re not overwhelmed. and figuring that out. So making sure that everyone has what they need makes it a little bit easier for me to figure out what I need and when I can take time to access that.
 
Michele Caswell (45:28.384)
This is Michele with the LNA program. For me personally, self-care is non-existent. I am the first to admit that. It’s really hard as a mom of seven special kids with a variety of needs to take a minute for myself. It’s a work in progress. I’m trying, but for now, as we kind of navigate this life. We’re essentially homebound with the family dynamics we have at the moment. So just trying to find the joy that we can at home, tapping into our natural resources and supports. We have amazing family and friends that we can rely on to kind of help us along the way, give these kids the experiences they deserve. Which in turn brings me some joy and maybe we can call that self-care every once in a while. But for me it’s just tapping into those resources and supports we have to make this life feasible.
 
Deana- NHFV (46:31.393)
This is Deana, and I just wanted to really echo how raw and real that pouring into yourself for self-care, it can feel really non-existent and isolating. and I I’m thankful that you shared that honest piece because I think it is really hard to articulate that as a parent when you’re looking around for support and help and you feel like you’re all alone. It’s been great for my family to at least be able to be acknowledged and heard by other families like ours, despite being homebound. I found a lot of community support with other families like ours in the New Hampshire Family Voices like Facebook group and just connecting and talking to other families when it’s been available has been a really good outlet for us.
 
Emily Woodward (47:33.258)
Thank you. Deana, you just spoke about Facebook groups and my next question is around strategies that you find most effective in preventing caregiver burnout. Do you have any other strategies that have helped you?
 
Deana- NHFV (47:48.926)
For myself, strategies to prevent burnout was over the years to not have to repeat myself. And so I really leaned into making documents that were very specific for my child of questions that I knew were going to be asked by multiple providers, by multiple agencies, and by multiple support and staff coming into the home. And so I took that document or documents that identified the information that was going to be required and requested of me. And I would update those documents and be able to either email them out or print them out and to provide them to multiple agencies, multiple staff and care providers to save myself the extra time that it was going to take to constantly repeat myself for the same questions that were going to be asked by multiple entities.
 
Jenn Baker (49:03.391)
This is Jenn. I’d say for us, our family is very sarcastic. We use a lot of humor, a lot of dark humor. We have people around us that understand that and can can jump in and be part of that. My son who is he would be defined as nonverbal, people have defined him or have described him as the most sarcastic nonverbal kid they’ve ever seen. So we try to do a lot of things with humor. I do a lot of like picking my battles and some things I just kind of let roll ’cause I just I honestly don’t have the energy and don’t want to burn out for something smaller when I’m gonna need it for something bigger. So, you know, just figuring out you know, ways for us to you know have a little bit of fun to goof around and you know work through that. I’d also say things like you know the Facebook groups are super helpful for getting information or figuring out different places.  My area agency, our family support council, does different events and that for us has been kind of a safe place to try new things sometimes. because you’re surrounded by people that understand and get it and it gives you that kind of bubble to be in a different spot to do it. But I’d say primarily for us it’s just a lot of humor and sarcasm.
 
Michele Caswell (51:03.699)
Michele here. For our family, we utilize some of the same things Deana and Jenn discussed. We make like keep a current up-to-date binder for some of our heavier hitters to share with people. We tap into our Facebook groups and our area agency support family support council. We also for the children that do attend school stay pretty closely connected with their school staff and make sure everybody’s on the same page with what what’s going on with the children, what do they need, and then our local church and just kind of our local community as a whole because I hate to say it, it’s cliche, but it takes a village and whether you have one children or seven children, you can’t do this alone, even though it’s very isolating and you feel alone, you’re not. There are people out there that have your back. You just have to find them.
 
Emily Woodward (52:13.748)
Thank you. What advice would you give to other families who might be considering becoming a paid caregiver? And what would you want them to know before they start the process?

Deana- NHFV (52:24.331)
This is Deana, for the PCA program, I think every family has such unique needs for their child and really taking into account the autonomy of your child and what works for your child and what they want. Do they want you to be the paid caregiver? Are they looking for somebody else to come in to give them that autonomy so they can recognize the parent as just the parent?  Or it does it work best for your child for you to be doing the cares for your child are things that I think are really important to consider.
 
Jenn Baker (53:10.191)
This is Jenn for in home support. I would say I always say to families, do what’s right for your family. and you know, ask questions, feel comfortable to push back, continue to ask questions if something doesn’t make sense or you’re not understanding the way that someone is describing something. Talk to other people that have taken part in whichever program you’re looking at to see kind of pros and cons and talk to your for in-home support I’d say talk to your area agency and figure out what their process is for paperwork, how they do it, how they support you. You know, is it an online portal? Is it, you know, you have to scan paperwork in and just make sure you have what you need to do that.
 
Michele Caswell (54:19.475)
Michele with the LNA program. Don’t be afraid to advocate for what your child or children need. Not all programs are the same. Find the one that suits your family the best. You know, can you handle having nurses in your home or you know, can you handle the amounts of paperwork? It it’s really a give and take about what each individual family needs. And it may take a little bit of time and a little bit of research, but finding the program that fits your needs the best will be the most beneficial.
 
Emily Woodward (54:56.436)
Thank you all. Do you have any final resources to leave with families as starting points if they’re looking to pursue some of these paid caregiving options?
 
Deana- NHFV (55:11.393)
I’d like to mention, this is Deana, that if you have questions, talk to other families, talk to your child’s medical provider, talk to your area agency if you’re already involved with your area agency based on medical need and medical necessity. I think is the most important thing to remember that these are billable services and so things might change. You might have hours be cut. You might have an increase in hours depending on assessment tools and intake based on medical necessity. It’s important to remember that things will change and we’re always here at New Hampshire Family Voices to offer guidance, offer available resources, what is available? How can you access those things? Who can you ask the questions to? Is it the pediatrician? Is it the home care agency? Should you be talking to your managed care option through Medicaid? And is there a case manager involved and how can that process serve your family and give you the best detailed information of what’s available?
 
Jenn Baker (56:41.529)
This is Jenn for in-home support. So, I would say first figure out what you, your loved one and your family might be eligible for. You know, because eligibility isn’t often just because you have a certain diagnosis or something like that. So figuring that out and what you need to do that, talking with other families about what it looks like and asking a lot of questions. So as you’re going through, you know, if you have questions about it, under you know, asking about it so you understand. One thing to know is sometimes things get explained in a way that maybe you know a family might not understand because if it’s someone that’s working in the system and they’ve explained the same thing to four families that day, they might start unintentionally leaving out details because in their head they know it. So you know don’t feel like you have to know all of the information about all the programs. It’s okay to ask questions, it’s okay to have you know, to ask someone else to try to figure out, you know, what you’re not understanding and really get that information. I will oftentimes say to someone, explain it to me like I’m a kindergartener because I need to fully understand this and know what it means and also, you know, how they’re interpreting certain, you know, language around rules and stuff, especially if you’re looking at one of the waivers. They have different criteria for what they do and that can sometimes get interpreted differently. So talk to people, get an understanding of it, ask lots of questions, and then keep asking more questions to understand it.
 
Michele Caswell (58:43.889)
Michele with the LNA program, there are several online and in person communities that can help people connect with other families here in New Hampshire who it may have you know experiencing life in similar ways. Personally, I have found the most helpful advice comes from other caregivers who are walking similar paths to me. Some of my kids have extremely rare genetic conditions, and it’s very isolating to know that you’re the only child in the state with that condition. I was able to find one other family with a child with the same condition as one of my children here in New Hampshire, and that honestly has been such a joyous thing because it’s it just takes a little bit of that isolation away. So just make those connections, join the Facebook groups, connect with New Hampshire Family Voices. There’s so many resources out there. You might just have to dig a little to find them.
 
Emily Woodward (59:48.064)
Thank you all for sharing those resources and we can surely link them in the podcast notes as well. So if you’re looking for any of those resources, they’ll be along with the podcast. Thank you again to our podcast guest today, Deana, who is speaking about the PCA program and Jenn on the in-home support, as well as Michele with the LNA program. Thank you all.
 
Deana- NHFV (01:00:15.041)
Thank you.
 
Jenn Baker (01:00:18.393)
Thank you.
 
 Michele Caswell (01:00:19.598)
 Thank you.