When you have a child with a disability, you become more than just a parent. You become a caregiver. And many of us “parent-caregiver hybrids” have a lot to learn about supporting a child with a lifelong disability. 

 

Medicaid waivers can be one of the hardest things to understand. Under broad federal guidelines, states can develop home and community based (HCBS) waivers to support people who want to live at home or in their community; “waiving” the option of living in an institution. These HCBS waivers are offered by nearly all states and Washington DC. The shift to community based living and person-centered care is an ongoing process. As is phasing out state-run institutions that are still operating in more than 30 states.  

 

Waiver programs vary greatly when you cross state lines. You can find more information about each state on the federal medicaid website. 

 

While Virginia offers multiple Medicaid waiver programs, the two most commonly used by people with intellectual and developmental disabilities are the Developmental Disability Waiver or the “DD Waiver” and the Commonwealth Coordinated Care Plus Waiver or the “CCC Plus Waiver.” 

 

Like institutions, waivers deserve a podcast of their own. The Virginia waiver system is complicated and subject to change. The My Life, My Community website has more information and helpful links. The Arc of Virginia has an in-depth and easy to understand breakdown of Virginia Medicaid waiver programs that is updated regularly. And the Center for Family Involvement has 1:1 informational and emotional support with staff that focuses on the nuances of Virginia waivers and can walk folks through what can feel like an endless maze. If you’re not in Virginia, Parent to Parent USA can connect you with supports in your own state to help you understand the systems there. 

 

Bottom line: waivers are a crucial component in accessing the supports needed to live independently. It’s critical for parents to understand them; and if a waiver is needed, prioritize applying for one. That’s because the waitlist is long. More than 14 thousand Virginians with disabilities are on it. Many of them have been on it for years. Which brings us to the heart of this episode: help and hope for people who are on that waitlist, and for their families. 

 

The Individual and Family Support Program or IFSP provides funds for those on the Virginia waiver wait list. But you have to apply. That’s why we brought on IFSP Support Coordination Supervisor Rhonda Gaines and Program Manager Heather Hines to explain more. 

 

SHOW NOTES:  

IFSP Call Center Monday-Friday 9:00am - 4:00pm: (844) 603-9248

My Life, My Community

 

IFSP Resources

 

For more IFSP Council Information email and to apply: [email protected]

 

Facebook Pages for IFSP Councils: https://mylifemycommunityvirginia.org/taxonomy/mlmc-menu-zone/connect-ifsps-regional-councils

 

 

 

 

 

 

TRANSCRIPT:

01:00:07:17 - 01:00:34:18

Erin Croyle

Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores the turn our lives take when a loved one has a disability. My first child was born with Down's syndrome in 2010. Not only did I have to learn how to be a mom, I had to educate myself about how to support a child with a lifelong disability.

 

01:00:34:20 - 01:01:04:16

Erin Croyle

Medicaid waivers were and still are, one of the hardest things to understand. Under broad federal guidelines, states can develop home and community based waivers to support people who want to live at home or in their community, waiving the option of living in an institution. State run institutions are still operating in more than 30 states. These HCBS waivers are offered in nearly all states and Washington, DC.

 

01:01:04:18 - 01:01:29:14

Erin Croyle

The shift to community based living and person centered care is an ongoing process, and waiver programs can vary greatly when you cross state lines. I'll provide more information on waivers in the show notes. While Virginia offers multiple Medicaid waiver programs, the two most commonly used by people with intellectual and developmental disabilities are the developmental disability waiver or the DDD waiver and the Commonwealth Coordinated Care plus waiver or the CCC plus waiver. The Virginia waiver system is complicated and subject to change. I'll put more information about Virginia waivers in the show notes as well. What is important to know is that for many people with disabilities, waivers can be crucial for accessing the supports they need to live independently.

 

01:01:54:09 - 01:02:19:13

Erin Croyle

It's critical for parents to understand them, and if a waiver is needed, prioritize applying for one. That's because the wait list is long. More than 14,000 Virginians with disabilities are on it. Many of them have been on it for years. Which brings us to the heart of this episode. Help and hope for people who are on that wait list and for their families.

 

01:02:19:15 - 01:02:39:14

Erin Croyle

It's called IFSP, which is short for individual and family support program. And joining me today to break it all down are IFSP Support coordination supervisor Rhonda Gaines and program manager Heather Hines.

 

01:02:39:16 - 01:02:50:08

Erin Croyle

Hello and welcome. Although our focus today is on funding and counsels. Heather, can you take a moment to tell us a little bit about all four service components of IFSP?

 

01:02:50:10 - 01:03:24:16

Heather Hines

Yes. Thanks, Erin. It's great to be here. We really appreciate you giving this program some attention. We are part of the individual and family support program, as you said, IFSP, and that is part of the developmental services Division within the Department of Behavioral Health and Developmental Services. So IFSP will try to stay away from the acronyms. But yes, we'll be talking a lot about the funding program today and our state and regional councils.

 

01:03:24:18 - 01:03:56:02

Heather Hines

But we do have multiple components of our program. I want to tell you a little bit about this. Our primary goal is to provide supports and resources to individuals regardless of their age and their families who are waiting for a waiver slot. You did a nice job of describing what that is a little earlier. We recognize, first of all, that if you were on an 80 waivers waitlist just by the fact that you're on that waitlist, you have significant needs.

 

01:03:56:04 - 01:04:24:20

Heather Hines

So the level of urgency may vary from person to person and family to family, but we know that there is not a single person on that waitlist sitting around filling their fingers and saying, oh, life is easy. We also understand that navigating the system, the DD system, and knowing where to go for resources can be overwhelming. We also know that many families feel isolated and might not know anyone else going through what they're going through.

 

01:04:25:01 - 01:04:45:13

Heather Hines

Feeling alone, not knowing where to go, not knowing what to do next is a lot. And so it's exciting to be part of a team that can hopefully, as you said, bring some help, bring some help to those families and to the individuals while they wait for that funding. A little bit more about the different parts of our program.

 

01:04:45:15 - 01:05:11:15

Heather Hines

So, as you know, Erin, we have a partnership with your team, the Center for Family Involvement, and we fund some of the work that you all do to support families. And we truly believe that family mentoring is extremely valuable and that families deserve to be able to talk to someone who has been where they are and can provide that emotional support while also helping them figure out what to do, where to go next.

 

01:05:11:17 - 01:05:50:17

Heather Hines

And that is wherever they are on their journey. Our partnership with VCU is very important. It also includes LEAP training, which stands for Leadership for Empowerment and Abuse Prevention training. We're excited to partner with you on that. Another partnership we have is with The Arc of Virginia, and that is to provide peer mentoring opportunities. Peer mentors are people with developmental disabilities who are hired, trained and paid to provide guidance and support and resources to other people with developmental disabilities to help those people achieve the life that they want.

 

01:05:50:19 - 01:06:11:17

Heather Hines

Peer mentors are dedicated to helping others reach new levels of independence and inclusion in their communities. Then we have our community coordination program that supports community action and engages individuals and families through our regional and state councils. And you will hear when Rhonda gets to talk a little bit more, she'll tell you a little bit more about those.

 

01:06:11:18 - 01:06:40:05

Heather Hines

We also have a partnership with Senior Navigator, which provides education information and general referrals through the My Life My Community website. I'm sure you're going to have links to that website in your show notes. Some families may have used this website for reference to my life, my community website, the IFSP resource for Family page, A specifically for families, individuals who are looking for resources, waiver, non waiver, anything goes here.

 

01:06:40:05 - 01:07:04:07

Heather Hines

But we just want to make sure people have information that is important to them in one place and folks need help navigating the system or finding services support. There's actually a call center that we have with my life, my community. There's a toll free number that maybe we can add in your notes as well. Anyone can call and speak to a live person between nine and four on Monday through Friday.

 

01:07:04:09 - 01:07:31:05

Heather Hines

So that's a great partnership as well. We encourage families to check out that website and we hope it's helpful for folks. And then we have a communication component. We have a monthly digest that we put out to individuals and families targeting, again, primarily people that are on the DD waiver waitlist. But it's really for anyone that's interested and trainings, events, resources, usually low cost or free.

 

01:07:31:05 - 01:07:43:03

Heather Hines

That's one of our roles. And we have annual messaging that goes out to everyone on the waitlist, social media presence and a lot more. So there's more to IFSP than funding.

 

01:07:43:05 - 01:08:08:22

Erin Croyle

There is a lot more. And those partnerships you mentioned, I know all of us at the Center for Family Involvement and the Partnership for People with Disabilities, which CFI falls under. We care deeply about helping individuals and families and many of us are those families. We have lived experience and we know how hard this can be. We want to make it easier and we collaborate with our community partners, such as The Arc of Virginia to do that.

 

01:08:08:24 - 01:08:17:15

Erin Croyle

Of course, we realize how important the funding is to families. So let's turn to that now. Tell us more about the IFSP funding piece.

 

01:08:17:17 - 01:08:48:03

Heather Hines

So the IFSP team administers this funding annually. It is one time for fiscal year, not calendar year. So that's one time between July and June every year. The funding portal opens for application for 30 days, so it opens Monday the 16th and is open for 30 days, closing on November 14th at 5 p.m.. The funds are allocated by the General Assembly and are intended to enhance or improve an applicant's quality of life.

 

01:08:48:05 - 01:09:16:10

Heather Hines

Promote their independence and of course their continued residence in their own home or in their family's home. To be eligible, the applicants must be on the DD waivers waiting list, and they also must be living at home or in their family's home. Those are the two main criteria. Now, who can apply is the individual who's on the waitlist themselves or what's called their custodial family member.

 

01:09:16:11 - 01:09:38:15

Heather Hines

I'm not a fan of that term. That's not the most person-centered term, but that's what's in the regulations. So that's why we use it, because I don't want to confuse anyone. And what that means is it can't just be any family member. So it's a family member who has primary authority to make all major decisions affecting the individual and with whom the individual primarily resides.

 

01:09:38:17 - 01:09:50:18

Heather Hines

That's just to be clear, those are the only two people that can apply is the person or their custodial  family member. I can tell you a lot more about it, but that's the gist of what the program is.

 

01:09:50:20 - 01:10:13:20

Erin Croyle

So I want to talk about the application process for the IFSP and for funding. In the past it was a first come, first serve basis, which, if memory serves, could be a really chaotic 24 hours for applicants and plus the lead up time to that deadline. You know, it was really stressful just getting online and having poor Internet or Internet lag.

 

01:10:14:00 - 01:10:25:20

Erin Croyle

It could be messy, but that's over now, right. And now it's a combination of priority and lottery. I know this can be complicated to explain, but can you give us the basics about these changes?

 

01:10:25:20 - 01:10:49:10

Heather Hines

SURE. So now what we're doing is basing how we distribute the funds on urgency of need or what's called risk of institutionalization. So you mentioned earlier when you were describing what a waiver is. Again, it's waiving someone's rights to an institution. That's where that language comes in, is we want to make sure that it's going to the people with the highest level of need.

 

01:10:49:12 - 01:11:10:07

Heather Hines

And again, yes, we wanted to make sure that everyone had access to it so that it is fairly distributed. And when it was first come, first serve and may have unfairly benefited people who were already more connected to resources and easy access to a computer, for example. And so we wanted to make sure that everyone had the same access.

 

01:11:10:07 - 01:11:32:00

Heather Hines

And so that's why it runs for 30 days. So everybody has time to get the information, to find out about it and to get to a computer and be able to apply and get the support they need to be able to apply amounts that applicants can request now is based on a funding category. The funding categories are based on each individual's priority status on the waitlist.

 

01:11:32:00 - 01:11:57:23

Heather Hines

So go to the CSB, get on the waitlist. When you meet with the case manager or the intake staff, they do some assessments based on a bunch of questions that they ask. They find that you need a certain priority criteria. So there's probably one, two and three are you. One is the highest level of needs. That's the folks that have the most complex needs and what we would consider the most at risk.

 

01:11:58:00 - 01:12:19:16

Heather Hines

Those individuals are the top priority for the funding as well. So they're the top priority in order to get a waiver. So they're top there on the waiting list and they're also top priority for getting the IFSP funding. That is the annual funding. If they apply, 50% of the funding goes to those on priority one. The way we determine who gets it is based on their critical needs summary Score. Again, that's something that's common with your CSB staff case manager and they ask questions on the form and there's a score attached to each person that tells how urgent their needs are within that priority one category. Funding approval is given to individuals and priority one who are most at risk of institutional elevation. As I said, highest level of need indicated by that critical needs summary score.

 

01:12:49:23 - 01:13:18:07

Heather Hines

So funds will be awarded to those with the highest critical need. Summary score. Until there's no funding left for that category. Families don't need to know what their score is before they apply. We have access to all of that information. They do need to be staying in touch with the CSB, with their case manager, if they have one, to make sure that their information is current and accurate in the system, because that's where we get the information when we're making our determinations for funding.

 

01:13:18:09 - 01:13:43:18

Heather Hines

We'll stay in touch with that case manager. So something changes in your life. They know what it is and they can update your priority. So maybe you should be priority one, but you forgot to tell them that a primary caregiver had a new situation. And maybe something really critical has changed for that person. So then for priority two and three, it's done a little differently for people that are on the waitlist and have a priority two or three status.

 

01:13:43:20 - 01:14:06:02

Heather Hines

Funding is given randomly to those applicants. So it's like a lottery system; this many people for priority two and three have applied for funding and then it's basically randomized because not even Rhonda or I that do it, someone gives us numbers and names attached to those and it's totally random. So we give funds to those people until we run out for that.

 

01:14:06:04 - 01:14:30:11

Heather Hines

One thing to note, though, is that if you have a priority two or three status and did receive funding during the last funding cycle, you can still apply this time. But we're awarding funding first to those in priority two or three who did not receive funding during the last cycle. If there is funding left, then those who received funding last cycle will be considered again.

 

01:14:30:12 - 01:14:50:12

Heather Hines

That's to make sure everybody has a chance. Over the three years I didn't get the randomization last time. Maybe I'll be more likely to get it this time. We want as many families as possible to have access to the funding. We want those with the highest level of needs to have access. So this is our way of trying to do all of that with a limited amount of funds.

 

01:14:50:14 - 01:15:19:18

Erin Croyle

That's really helpful. And I just want to also say when you're reaching out to your community services boards, if it's something you haven't done before, just know that they're regional, county, city based and sometimes you really have to go through a phone tree to get to someone who knows about waivers and programs. So be patient. And again, if you need help, you know, see if I can help you navigate getting through to your CSB, because depending on where you live, it can be a complex process until you get to someone who knows what you're talking about.

 

01:15:19:20 - 01:15:34:20

Erin Croyle

I want to know how many families are able to get some financial relief from this program if we're talking 14,000 on a waiting list. How many do you see apply typically? And then how many do actually get funds and how much money are you talking here?

 

01:15:34:22 - 01:16:12:15

Heather Hines

The total amount available, this funding period, as well as back in January, February, each time it's been $2.5 million. So that's the total. During the winter of 2023, applications were submitted for every $3 million. We could only award 2.5 million, but that meant that we were able to approve 3770 applications. So that's 3770 individuals or families that received funds, almost 4000 people, which is great, but obviously not close to 14,000, as you said.

 

01:16:12:17 - 01:16:39:06

Heather Hines

But with limited funds, it's good to see that many people getting something. We expect that number to be about the same this fall since we again have 2.5 million and the amounts for priority have not changed. So we are thinking, let's see, last time the total number of people that applied was 4914, as I said. And then the number that were approved was 3770.

 

01:16:39:06 - 01:16:59:23

Heather Hines

So that 77% of people who applied were able to receive funds. If we get more applications this year, which it's looking like it might, the percentage will be lower. But we would think that the total number would be about the same. Getting close to 4000 individuals or families would get funding.

 

01:17:00:00 - 01:17:04:06

Erin Croyle

How much money do families typically get when they apply?

 

01:17:04:07 - 01:17:21:22

Heather Hines

If they're on priority two and three? They couldn't get more than 500. So you can ask for less than 500, but you can't get more than 500. Then for priority one is 1000. You can't get more than 1000, but you could get less if you ask for less than we had people that have asked for half of that.

 

01:17:21:22 - 01:17:33:22

Heather Hines

But typically most people, when you look at the types of things that you can apply for, usually there are several items that people add together to make up to get up to that 1000 or to that 500.

 

01:17:33:24 - 01:17:46:15

Erin Croyle

Well, let's talk about what they apply for. These funds are meant to help individuals and their families dealing with complex needs and that are at risk for long term care. So what do people tend to use the money for?

 

01:17:46:17 - 01:18:09:13

Heather Hines

Like we were just talking about $500, 1000. It is not life-changing. We recognize that in terms of addressing complex needs, it's not a lot, but it does provide a certain level of financial relief for families to obtain items or services that at least help in the short term or some life stability or to get the basic need met.

 

01:18:09:14 - 01:18:37:14

Heather Hines

The categories that the funding is allowed to cover are improved health outcomes so that something like therapies, medication and co-pays that are not covered by insurance. This funding cannot be used for anything if there is another funding source that covers it. So if you have a CCC plus waiver and it covers the service, you can't then use that IFSP funding for that.

 

01:18:37:14 - 01:19:04:08

Heather Hines

That's one of the rules and regulations. So again, improved health outcomes on that covers therapies, medications and co-pays that aren't covered by insurance, communication devices, even something like dental care. There's a whole list of items and services that are allowable under that category, and that's going to be something you can get really detailed information about in our guidelines, which you're going to link to that in the notes.

 

01:19:04:10 - 01:19:44:09

Heather Hines

They're safe living categories, so that's anything to help the person stay safe in their home, such as furniture, handrails, appliances, ramps, stairlifts. There's again, a long list of items under that. Those are just a few examples. Community integration, that's the third category. So something to help someone be part of their community covers a lot of different things like companion services, transportation services, recreational opportunities, even modifications to a vehicle so that someone can go into their community and participate in the world.

 

01:19:44:11 - 01:20:18:16

Heather Hines

There's a lot of different options under there. Another thing about funding, we have multiple tools to help people with the application process. We want to make sure that when you go on to apply, you have everything you need to make it go smoothly and make it go quickly. On our My Life, My Community Resources Funding Page, we have a two page quick reference guide a video tutorial, a full user guide, a list of frequently asked questions and answers, all to help families to get the help that they need.

 

01:20:18:16 - 01:20:22:06

Heather Hines

And several of those documents are also available in Spanish.

 

01:20:22:08 - 01:20:46:14

Erin Croyle

Before we move forward, I do want to clarify, because I'm not sure if I said or you said; and it's so confusing for everyone. You can have the CCC plus waiver while you're on the DD waiver waitlist. And it's actually a good thing to apply for because that would then give you Medicaid, which can help with the co-pays. And it sounds like most of the funds that people apply for are those things that they would get if they had the DD waiver.

 

01:20:46:14 - 01:20:58:00

Erin Croyle

So environmental modifications, adaptive tools and support with with respite and all sorts of things that are why people are looking for the DD waiver.

 

01:20:58:02 - 01:21:01:09

Heather Hines

Right. Exactly. Really good point.

 

01:21:01:11 - 01:21:27:21

Erin Croyle

The other thing I want to point out is that the job that you do, I may be projecting here, but I feel like you care deeply. Anyone who thinks like this isn't enough money or why can't we serve more people? Nobody here on this podcast can do much about that. But if you connect with The Arc of Virginia, they actually do advocacy work and have a day where they go and see the General Assembly in the early parts of it's usually January, February.

 

01:21:27:23 - 01:21:49:03

Erin Croyle

So that's where you advocate to try to change this. You know, the people here are just doing the work, but if you want to help change things and move them along, I highly recommend connecting with The Arc of Virginia and they always want more voices to speak to our legislators to help them understand how important funding these initiatives are.

 

01:21:49:05 - 01:22:04:10

Erin Croyle

Let's talk about the data breach in 2019 and then again in 2021. There was a data breach on the IFSP portals where parents were applying and individuals were applying. What's being done to ensure that that doesn't happen again?

 

01:22:04:12 - 01:22:33:07

Heather Hines

A data breach did occur. Those two years. Rhonda and I joined the team last summer and we've been part of the course correction and that has been to use a trusted and reliable application portal. Some people may have heard of WAM. It's also called the waiver management System. That is a system that has already been used by the Department of Behavioral Health and Developmental Services.

 

01:22:33:09 - 01:23:04:18

Heather Hines

It's the same place that people on the DDwaivers waitlist go for their annual forms that they need to fill out. If someone is on the DD waivers waiting list, then they may already know about this spot of the waitlist portal or the IFSP portal. The funding portal is what was developed in preparation for the January and February funding programs. A lot of work was done to prevent future issues.

 

01:23:04:20 - 01:23:34:06

Heather Hines

That were experienced in previous years. There was lots of testing and that was internal testing within the department is also testing with the vendor who we worked with on the WAM system. Over 4000 people applied using that system in January, in February, and there was zero breaches of protected information. So we've had a successful year and our team is available throughout the application process, along with the My life, my community call center staff to troubleshoot and resolve errors. Any time people were applying and had questions that way, everyone had a successful opportunity to get the application submitted. Again, with this launch, the cycle has had no breaches and we're hearing from applicants that they can submit their applications in under 5 minutes. We're hearing from our partners at my life, my community.

 

01:24:00:19 - 01:24:28:17

Heather Hines

Yes, people are calling with some questions here or there, but overall, it's going really smoothly for folks. And we're looking, always looking, to learn more about what's working and not working. So each year that we can continue to enhance the process for everyone and make it easier for people to apply because we want everyone to have an opportunity and we don't want glitches or anything like that to get in the way for this important funding, even though, as you said, people would love for it to be more.

 

01:24:28:17 - 01:24:46:06

Heather Hines

And that's not something that we have control over on this podcast, the three of us. But what we do have control over is trying to make it, make it work and make it work for people to be able to apply easily. So we've been working really, really hard on that and we hope that is felt by people when they complete the application we've mentioned.

 

01:24:46:06 - 01:24:59:04

Erin Croyle

We're going to put all sorts of links in the shownotes, including your FAQ page, but while you're here, what's a couple of frequently asked questions that are the most important things folks should know about?

 

01:24:59:06 - 01:25:31:18

Rhonda Gaines

Well, Erin, outcome in and answer to that question, again, thank you for having Heather and I here today to share information. Some of the most frequently answered questions a comprehensive guide can be found at the My Life My Community website, under Resources for Family, under funding. So I'll just mention a few just for quick reference. A lot of people want to know how long it takes before a funding decision is reached after they submit their application.

 

01:25:31:20 - 01:26:01:21

Rhonda Gaines

In general, once funding closes, we reach out and notify applicants of an award decision within 1 to 2 months. That's after screening and making decisions for those who apply. When you receive an approval for funding or you receive a denial of funding, those decisions will come to the email address that is listed on the application. So you will know one way or the other.

 

01:26:01:23 - 01:26:41:02

Rhonda Gaines

Another question is asked, I need the IFSP application translated into another language. Currently, the IFSP funding portal in WAM has a Spanish translation function. You can see our user guide, again, on the My Life My Community IFC Funding page for instructions on how to translate the application. Another question: Who can help me complete my application? So if you need assistance, you can reach out to your Community Services Board, the assigned support coordinator or intake specialist.

 

01:26:41:04 - 01:27:07:05

Rhonda Gaines

You can get assistance from IFSP utilizing the funding FAQs. You can also access a trusted family or friend to help you apply for funding. We also have a quick reference guide on the My Life My Community web page, under funding. It's a quick seven, eight step guide to get you through the funding process in the most efficient way.

 

01:27:07:07 - 01:27:35:19

Rhonda Gaines

Another question: Can I be reimbursed for things I have already paid for before my award notification was received? Unfortunately, you cannot be reimbursed for items that were previously purchased before you received the funding award. All purchases must take place after the card or the funding is received.

I live in a rural area and my wife Fi is unreliable.

 

01:27:35:21 - 01:28:08:11

Rhonda Gaines

I do not have a computer. How can I apply? Is there someone who can help me? All applications currently must be submitted online. In addition to using a computer, now you can complete the application using a smartphone, phone, or a tablet. If you do not have access to any of these devices. Please consider accessing using a computer at a local public library. So that information is general to everyone in the city or county that you live.

 

01:28:08:13 - 01:28:36:22

Rhonda Gaines

And you can access those devices for free. What do I do with my receipt after purchase? Recipients should hold on to receipts for three years. Keep them in your personal records. Don't send them to IFSP. However, be prepared to provide them upon request as part of our ongoing quality improvement process, IFSP may contact recipients to learn more about how they utilize the funds.

 

01:28:36:24 - 01:29:00:15

Heather Hines

And I will jump in real quick to add. Rhonda, you mentioned using the different browsers and mobile. Our vendors made some improvements to the use of the application on a mobile device, but we got to admit it is a little tricky. It's not as user friendly as we'd like it to be. And so you can physically do it on a mobile phone.

 

01:29:00:15 - 01:29:21:04

Heather Hines

But we really recommend using a laptop or tablet just because of the quirkiness of it on the mobile devices. And we have had people that have used their phone to do it, but it's a lot of pinching and resizing things. And so it's not as simple as just saying, Hey, make it available on mobile phone. It costs funds to do that.

 

01:29:21:06 - 01:29:26:08

Heather Hines

We're just wanted to be clear that it's better on the laptop.

 

01:29:26:10 - 01:29:32:20

Erin Croyle

Yeah. And I love Rhonda that you reminded us to use our libraries. It's a resource I think we forget about sometimes.

 

01:29:32:22 - 01:29:33:24

Rhonda Gaines

Absolutely.

 

01:29:34:01 - 01:29:44:03

Erin Croyle

I think it's really exciting that you've started regional and state IFSP Councils. Rhonda, can you explain what these are and how people can get involved?

 

 

01:29:45:01 - 01:30:17:00

Rhonda Gaines

Sure. This is near and dear to my heart because of course this is the coordination that I provide. Our state and regional councils are a coalition of members and they work collaboratively to build on existing community connections and resources in Virginia. They help to identify service gaps and we make resources, services and support available to individuals and families who are on the waitlist and the community at large.

 

01:30:17:01 - 01:30:52:14

Rhonda Gaines

So that information is shared during our council meetings and on our social media platform. IFSP administers the council component and we also facilitate the work of the Council. We all come together to educate, inform, and encourage our community. I'll make the distinction between what State Council does and what regional council activities are. For State Council, again, they are representative of the five service regions across Virginia.

 

01:30:52:18 - 01:31:30:22

Rhonda Gaines

They all volunteer their time. There is at least one member for each region and those regions are region one is considered Western, region two Northern, Region three south Western, region four Central Virginia, and Region five is Eastern Virginia. Some of the things I do is that they serve as an advisory board to IFSP. They provide feedback on the state goals in an effort to focus on the immediate needs of resources for those who are on the waitlist.

 

01:31:30:24 - 01:32:00:17

Rhonda Gaines

They provide oversight towards progress planning goals. We have some very talented people on our council, so they utilize their gifts, their professional gifts, their personal gifts, their lived experience gifts, and they help us when we're developing questions for survey data. They give us feedback on how certain information is presented in terms of how is it presented in the best language for the community at large.

 

01:32:00:23 - 01:32:47:07

Rhonda Gaines

Their insight to some of the work we do is very critical and some things we just need a different eye before we put the information out to the community at large. They suggest operational enhancements for the current funding component. A lot of our members are also parents. They're individuals with lived experience and they may also apply for funding and they give us their feedback in terms of what that experience was like for them.  And we've actually used their feedback and the public in general, their feedback through our surveys to make some of the enhancements that we have in place this year for this current funding cycle.

 

01:32:47:09 - 01:33:20:08

Rhonda Gaines

DBHDS Staff, along with Virginia Commonwealth University, RNCS ( regional network coordinators) and the Council. Together we recruit, screen and select new council members and we're in the process of starting that now with beginning the application process. And through the end of November, we will screen interview and make our selections for the beginning of 2024. The State Council has four annual meetings.

 

01:33:20:10 - 01:34:02:07

Rhonda Gaines

AppointeeS serve a one year voluntary term reappointment is allowed for a maximum of three terms. So that's all for State Council. Our IFSP Regional Council Leadership Board, they are representatives of five regions across Virginia and they volunteer their time as well. There are at least four members for each of the regions, which I have stated previously. Western, northern, southwestern, central and eastern. The Regional Council operate a little bit different in that they work at a grassroots level to improve the supports in their community.

 

01:34:02:07 - 01:34:50:09

Rhonda Gaines

They come together to identify, develop and coordinate important educational presentations to the community.  And some that we've had this year has been on health care advocacy, disparities and in equities that individuals may face and their families when they go in for health care and emergency care and when they're hospitalized. We have presentations and they give us really good tools, information for family to access so that they can become better advocates for themselves and so that families can also advocate in a better way for the individual. Members, they live in, the localities that they're serving. As part of the makeup and for full representation of our council's, 

 

01:34:50:10 - 01:35:19:05

Rhonda Gaines

we have a person who must be a self advocate so that we can always have their perspective, family members, so that we can have their perspectives. Caregivers, community professionals and even providers can be part of our council. The council serves a one year term and reappointment is allowed.  So there are currently no restrictions on the number of terms.  I FSP Council, they work closely in partnership with Virginia Commonwealth University, Center for Family Involvement. Their respective regional network coordinators from CFI are available to help facilitate the activities of council and support in planning and implementation of meetings and events. So our ences work closely with Council to identify and make available resources to their communities via social media. So each region has a Facebook social media page and that's where we primarily share resources.

 

01:35:54:17 - 01:36:28:08

Rhonda Gaines

We share current resources, we share new resources, we share unique resources to that particular region, trying to close a service gap need. They make contact with organizations in trying to develop partnerships and sharing resources and coming together where some of the presentations that we do also direct marketing to other agencies. The RNCS also help council work together to comprise monthly reports and quarterly reports on the progress of council activities.

 

01:36:28:08 - 01:36:58:07

Rhonda Gaines

So we get an opportunity from their perspective to see where they are currently and how they're performing as a council towards meeting our state planning goals and then make recommendations in terms of where they'd like to go next. What is the future planning for state and regional councils? So currently IFSP is recruiting and if anyone is interested, please email us and Erin

 

01:36:58:07 - 01:37:19:21

Rhonda Gaines

you can also include this in your links, but I will state in case someone is listening and want to write it down immediately. It is I-F-S-P community spelled out so it is c-o-m-m-u-n-i-t-y  at D-B-H-D-S dot Virginia spelled out dot G-O-V.

 

01:37:19:23 - 01:37:35:21

Erin Croyle

Rhonda I love hearing about this. It's so important. You know, we always hear representation matters and you have this rich, diverse mix of people on these councils. I am so curious, a couple of the specific bits of feedback that you're getting from these councils.

 

01:37:35:23 - 01:38:08:02

Rhonda Gaines

The most beautiful thing about our council members is their passion and dedication as a whole. They're genuinely interested in being part of something that can make a difference, even if it's just to one person or a family's life. They offer and share their perspective, their lived experience, triumphs and challenges of everyday living for someone with a disability diagnosis, and that helps them help other people.

 

01:38:08:04 - 01:38:54:10

Rhonda Gaines

As self advocates, families who support these are the people that are comprised of our council. They could be a caregiver or professional advising on how to navigate services system. All of these people are critical sources of information and they can help someone who may be feeling like they're on an island and they're not sure what to do. So their feedback and the work that we do is incredibly important for us moving forward and coming up with new ways as much as we can to provide the best services to people who are currently on the waitlist.

 

01:38:54:12 - 01:39:26:15

Rhonda Gaines

Sometimes we get focused on major issues of government, which can take a lot of time to improve our community services systems. But individual schools and their families, they're just concerned about getting through daily challenges. They want to be included. They want good medical treatment, access to employment, education.  And our council, They are resources to help some of those people kind of find their way.

 

01:39:26:17 - 01:39:53:21

Rhonda Gaines

Their mere presence in our service component speaks volumes and adds to the legitimacy of what we're doing. Some of those in the community who participate in our meetings, be educational presentations, they join in on conversations. They seem to feel inspired and reassured that they can find a way to make things better for themselves and for their loved ones.

 

01:39:54:01 - 01:40:15:07

Rhonda Gaines

So the feedback that we receive from councils, the information that they can extend to the community, seems to be the major point of this whole component of what we're working with and what we're offering to the community.

 

01:40:15:09 - 01:40:45:06

Erin Croyle

Yeah, you know, time and time again, one person's experience, it may seem selfish to share it, but so many other people are going through it that if you can help fix it for one person, we know how to fix it for multiple people. I bet it's so beneficial in so many ways. Absolutely. Right. And the fact that you're connected both to CFI and other things, I'm sure some of the issues that might not have to do with IFSP get put up to whoever might be able to help with it.

 

01:40:45:06 - 01:40:46:21

Erin Croyle

Do you experience that at all?

 

01:40:46:23 - 01:41:20:12

Rhonda Gaines

Oh, absolutely. Our council is made up of professionals with a lot of the organizations that we collaborate with, and so we have just this large pool of resources. We can pose a question to our council and someone will say, Hey, I know a person at LEAP or PEATC or the Department of Education, and we can connect with them, or someone sends a question to our support box or to our community box.

 

01:41:20:14 - 01:41:36:20

Rhonda Gaines

We can send that out a particular council member, because on their application we have information in terms of their background, the work that they've done and organizations that they're connected with and it's so easy for us to all of information to help someone.

 

01:41:36:22 - 01:41:39:19

Erin Croyle

I love it. It's just changemakers, right?

 

01:41:39:21 - 01:41:41:03

Rhonda Gaines

Absolutely.

 

01:41:41:05 - 01:41:52:01

Erin Croyle

So anyone interested in this, can you tell us a little bit more about the application process for the councils and also if there's any stipends or reimbursements for travel and child care?

 

01:41:52:03 - 01:42:27:03

Rhonda Gaines

Currently, anyone who's interested in serving on the council and they have the time to commit and a volunteering capacity on state or regional councils may obtain application by emailing us and that email address you can also include in your links. But it's I-F-S-P community spelled out C-O-M-M-U-N-I-T-Y at D-B-H-D-S dot Virginia spelled out dot G-O-V . A member from our IFSP team will respond to your inquiry and tell you more about the application process.

 

01:42:27:03 - 01:43:11:23

Rhonda Gaines

But we're starting now, so we're getting applications ready and we will actively begin recruitment and this will go through November and we expect to have appointments identified the 1st of December so that we can start 2024. Currently, there are no stipends or reimbursements. We're meeting virtually. So it does not require our council at this time to be away from home or find transportation in or have any out-of-pocket expenses currently other than just attending our meetings and communicating through our platforms.

 

01:43:12:00 - 01:43:21:14

Erin Croyle

All the horrors of the pandemic, the one bright light is learning to meet differently. It really, really helps. Participation is so much wider now.

 

01:43:21:15 - 01:43:22:18

Rhonda Gaines

Absolutely.

 

01:43:22:20 - 01:43:28:04

Erin Croyle

Looking to the future. When's the next IFSP funding application period?

 

01:43:28:06 - 01:44:04:15

Heather Hines

Well, we're actually in the middle of it or just began it on Monday, October the 16th. We will be accepting applications for 30 days and that ends on November 14th, 2023 at 5 p.m.. Our goal is to annually have the application portal open in the fall.  So we're thinking around October ish each year. Again, we want to get some feedback from our council on the timing and see what others have to say about if that timing is good for families and individuals.

 

01:44:04:17 - 01:44:20:17

Heather Hines

But right now and in the past it has been in the fall. It just this past year it ended up being early January and February for a variety of reasons. But like I said, our goal is to have it in the fall every year. If that works for people.

 

01:44:20:19 - 01:44:46:19

Erin Croyle

We've got to wrap up here. But before we go, I've got to ask and it's a little strange, but in a dream world, our jobs wouldn't exist. People with disabilities would have the supports they need. There'd be no wait lists. But that's not happening. And we learned today that your job is so much more than just funding. You're looking to support families and hear from families to get them what they need throughout their lives.

 

01:44:46:21 - 01:44:54:05

Erin Croyle

I'm really curious what's your favorite part of the work that you do?

 

01:44:54:07 - 01:45:22:10

Heather Hines

I have a brother with an intellectual disability, so my world has been advocacy for my brother, for people with developmental disabilities since I was born because he's my older brother. So when I found this role last summer, I just thought, Oh my gosh, this is exactly the population that I care so much about. It's not just the individual, but it's their family.

 

01:45:22:15 - 01:45:42:17

Heather Hines

There's all different kinds of families. Some families are really involved. Some families you might not hear from, but like once a year, some people's families have a lot of drama. Some people's families get along great. But no matter what, their family. Professionals are going to come in and out of your life. But your family is always your family.

 

01:45:42:21 - 01:46:08:08

Heather Hines

So we can't provide quality services to an individual without thinking about their family. When we think about person centered services and how important is; family centered services does not mean that we're not focusing on the person. It means we're focusing on the person in the context of their family, in the context of their community, which all of these things are important.

 

01:46:08:10 - 01:46:33:13

Heather Hines

The state government is not going to be able to solve all the problems. And so I'm really passionate about working with individuals and families to help them understand what the government does offer and what is available to them, how to find it so that it doesn't need to be overwhelming so we can do things to make that better for people.

 

01:46:33:15 - 01:47:14:08

Heather Hines

But then also like Rhonda was saying, through the councils, even if we figure out how to get those resources, we still need to not feel alone. We still need to be around other people that we can talk to. We need emotional support, we need community. It's not only about getting that IFSP funding. That's one little thing really, in the grand scheme of things, if the councils continue to grow and strengthen in their coalitions and achieve their goals, that to me means that the quality of life for individuals across Commonwealth will improve because they will know where to go to get information.

 

01:47:14:10 - 01:47:34:08

Heather Hines

They will feel like they have other people that they connect to. They will have access to training, to information. And I just really truly believe in the mission of what our vision is all about, what our team is all about. And so it's really nice to be part of a team where, as you can see, Rhonda cares greatly as well.

 

01:47:34:10 - 01:47:55:09

Heather Hines

We have a communications and program coordinator who is also very passionate and knowledgeable. Between the three of us. It's just been a wonderful experience. I'm just excited to see Virginia come together. Different agencies across the state, different organizations who are all focused on not only this, the individual, but their family making life just a little bit better.

 

01:47:55:11 - 01:48:17:13

Rhonda Gaines

My passion, it must just be a part of my makeup because my desire to care for other people. It started at a very young age and I used to get in trouble because I would take my things and give it to other people that needed things. You know, my my parents would like, you know, why are you giving your stuff away?

 

01:48:17:13 - 01:48:40:11

Rhonda Gaines

My answer was like, Well, because I know I can get more, I can get other things, and I don't know if that person can get another coat or a scarf or whatever. That was kind of I think the foundation in elementary school, you know, and to care about other people, it's just very personal to me. I'm very sensitive about that.

 

01:48:40:11 - 01:49:31:07

Rhonda Gaines

And I am very affected when a certain group or class of people are marginalized and treated, I just want to do something about it. And this field Community Services has been a great vehicle for me to be able to express that in many ways, whether it was direct care or quality assurance or data review. And now in the role of community coordination and working with the councils on the other side of those who are waiting for slots, which can be a very frustrating period of time.  You kind of identify what is it that you can do within your capacity, within your team, within your division, within your agency to try to make a difference for other

 

01:49:31:07 - 01:50:12:07

Rhonda Gaines

people. That's what me, the council and the RNCs - we're working to try to figure out the best way within our power and our capacity to help those who are on the waitlist, who may be incredibly frustrated and at times giving up. And usually if you can provide one thing to give relief there and there's hope that they can keep moving through the process, you know, not just stopping.

 

01:50:12:09 - 01:50:40:13

Rhonda Gaines

Yes, it's work and it's employment, but it's also a passion for me. I don't have children, but I do have two nieces who are on the autism spectrum, and I have a nephew who is on the autism spectrum. And I am quite the advocate at when it comes to services that they need within their educational systems. And I help my brother and my sister.

 

01:50:40:15 - 01:51:06:05

Rhonda Gaines

I guide them with trying to navigate their systems in Kentucky and in Michigan. Unfortunately, all services are not created equal, you know, state to state. But the information I do provide them gives them a certain level of empowerment to advocate at a very high level for their children. And that I feel good about. IFSP in all any of the work I've done in the past.

 

01:51:06:05 - 01:51:20:09

Rhonda Gaines

And what I'm doing currently is generated on a passion to do so.  And want things to do better. Kind of within my little my little power circle, you know?

 

01:51:20:11 - 01:51:40:05

Erin Croyle

Oh my gosh. I mean, both of you, I just I kind of have chills because a lot of times families get in this process and a lot of people that we come across, they don't really have lived experience. They can clock out at the end of the day. And it just doesn't feel like they truly understand. And hearing both of your stories, you do get it.

 

01:51:40:05 - 01:51:58:24

Erin Croyle

You know what we're going through and you understand the hardships and how 500 hundred bucks isn't much at all, but it helps. But also, if we do not have a waitlist anymore and we don't need the application for these funds, you all still have a lot of work to do and I am so glad you're doing it.

 

01:51:59:01 - 01:51:59:21

Rhonda Gaines

Thank you.

 

01:51:59:23 - 01:52:01:11

Heather Hines

Thank you.

 

01:52:01:13 - 01:52:29:02

Erin Croyle

Thank you. And thank you listeners for joining us. Waivers can be a complicated process. Let us know what questions you have and what you might want to learn more about in future episodes. And while you're at it, please rate review and share. This is The Odyssey. Parenting. Caregiving, Disability. I'm Erin Croyle. We'll talk soon.