Getting the Most Out of Self-Determination (don't give up!)

Lindsay Crain
Hi everybody, welcome to Undivided Live. I'm Lindsay Crain and I head the content and community teams at Undivided, and today we're going to be diving into the self-determination program in California, a program many consider to be one of the biggest game changers in recent years for individuals with developmental disabilities. We hear from families every day who are thinking about transitioning, and they have lots of questions. They want to understand how it works, if it will benefit their family, how it will benefit their family, and if they have the bandwidth and capacity to manage it. And all of these are very valid concerns. So we want to demystify self-determination and tackle some of your biggest questions. So whether you're contemplating making the change, or you're already in and wondering if things are going the way they're supposed to, we're going to talk about getting the most out of the self-determination program. We don't want you to give up, we want your child and your family to have what they need. So we're going to talk about getting started, what can be covered, who's available to help, who pays your people, budgets, spending plans, and more. And luckily for us, we have one of the most knowledgeable people in the state here with us today, and she'll be breaking it all down: Ms. Christine Tolbert. Christine is the self determination -- hey, Christine! -- Christine is the self determination program manager for the California State Council for Developmental Disabilities. Christine has advocated for individuals with disabilities for over 20 years serving populations from early start to adulthood. And we are so grateful to have you with us today. Christine, welcome.

Christine Tolbert
Thank you. I'm so thrilled to be here with you all today. Thanks for being here.

Lindsay
Course. And also, also with you in the chat, we have our community manager, Donna and our lead navigator, Kelly, they're going to be passing your questions along to us. So please throw them into the chat. There's a lot to cover. And there's way too many questions to fit in an hour. So we're going to get to as many as we can. So let's dive straight in. Okay, Christine. So for those first starting out, can you just let us know what is the self determination program?

The self determination program is really a way to be able to gain more freedom, control, and responsibility in choosing services and supports to help you meet your IPP goals.

Lindsay
And what, I mean, kind of the big question, I know that a lot of families are here wondering, why should families consider switching from traditional Regional Center funding to self determination?

Christine
So I think that the reason that folks are really choosing self determination is largely because they're not feeling well served by the services and supports that they're currently receiving. Or possibly, they're not being really served by any Regional Center services and supports, right. So maybe they're unable to find staff or keep consistent staff or services, or they have more unique needs that might be more difficult to meet with the more traditional regional center vendors. I think those are some of the biggest reasons that we see folks really wanting to pursue self determination above and beyond that freedom, and that control, and that flexibility and being able to choose services and supports that are in your local communities that are accessible to really anyone.

Lindsay
Absolutely right. But I think I can speak for a lot of families in that, you know, we see things that we think would be great, but our kids aren't able to join those or to have those supports because they need more than what we can currently get. And so then, either they're home with us, they're not participating, they're not included, you know, for reasons beyond, you know, just because that's how the system was built. And I also, Christine would then, you know, on the other hand, are there circumstances where families should not consider switching?

Christine
You know, we, I've been at this a while. And I love all of the interaction that I'm able to have for folks, with folks, right. I mean, we see people that are so amazingly served in self determination that they can't imagine anything else. And then, of course, I meet those who are either trying to get into that process, which I think we're going to talk about in a little bit. And some of those, you know, hiccups that can occur. And then we also have folks that just feel like, No, this maybe isn't for me. I think some of the reasons that folks don't switch, at least those people that do go to the orientation is they realize that extra added layer of responsibility and choosing and arranging for services. That can be, that can feel like a little too much for some people, especially if they don't feel like they have the supports to be able to do that. I think the other flip side would be if you feel like your needs are being really well served by the traditional model, you don't feel like you have any unmet needs, right, or your unmet needs maybe are being met in other ways that you don't really need the regional center to come in and support that, then I think, if it's working for you, and it's working well for you, then you know, go with what's working well for you. At the end of the day, whatever model it is that's working for you and your loved one, that is the one that you should stick with.

Lindsay
Right. And as every family knows, what's working one year might look really different than next year, and which, which is also a really important point for us to touch on. Can we quit self determination at any time of the year and return to the traditional Regional Center funding?

Christine
The short answer is yes. I think we're gonna get a little bit into timing down in our hour here together. But yes, because it is a voluntary program, if you are in self determination, and for whatever reason, it is not working for you, and you need to revert to the traditional model of services, you can do that. If you choose to do that and you're back in the traditional model, and you realize, oh, no, it was actually better in self determination, than you are going to need to wait a full 12 months until you can then re-enroll into self determination.

Lindsay
Right. And we will, you know, talk about the fact that there, you know, there are waiting lists and certain different parts of this process. So it's important to know there is an eject button, right? But you might consider very carefully if you want to trigger it.

Christine
I like that. I might use that if I can, in my orientations, I might use eject button. I really like that, yes.

Lindsay
Well, another sort of myth or something that we, you know, consistently hear, we do hear more hesitation from families with younger kids, you know, for a million different reasons. So, I mean, should families with children under three, for example, even consider applying?

Christine
You know, recently, actually, I've noticed a little uptick and our surveys about those who are attending that have children that are in early start. And I love the fact that they're there, first of all, because they're really looking ahead. I would say that I see no reason why someone wouldn't want to maybe attend an orientation and become more familiar with self determination as a program, we know that those that are in early start or have provisional eligibility would not be eligible to enroll in services, unless and until they gain what we call Lanterman Act eligibility. But for those that are maybe expecting that that might be the case, or they're having those conversations with their early start service coordinator, kind of anticipating that at the age of three, their child will be eligible, I do have some folks attending the orientation because they just want to be ready. When they move into the three and up services, they begin that IPP development, and then they can also sort of start their self determination planning. The other thing to consider is that you only need to attend an orientation one time, and be able to demonstrate that you have attended, right, through a certificate. And so if someone that has a young child and early start, and they've attended that orientation, that's enough for them to be able to start that enrollment process if and when their child becomes Lanterman Act eligible.

Lindsay
Which is a great point. And I think, you know, if she hasn't already, Donna is sharing the link to all of those the orientations that you can find a list of those orientations that the State Council puts on. And I think it's a great point, whether you're thinking about it, whether you know you want to do it, even if you're, you know, a couple months before your child turns three or before you're, you know, ready to pull the trigger, it's a great opportunity to go, it can count later for the orientation that you need. Or you can go back as many times as you want and ask the questions, get that information. So it's a it's a great way to really go and dig deep into the ways to get started. And to reiterate what Christine just said, because I think the myth part comes where people sometimes think that this is for older kids or for adults and that there is no age limit. And we will talk about all the ways that the program can benefit in many different ways, but I think that's important for families to hear, right? Of course, you have to be ready, but the program is made for for kids, you know, of all ages that the Regional Center serves.

Christine
Yes, yes.

Lindsay
And another thing to stress that we've already brought up a couple times is that this is not an overnight process. And all of those fabulous services that you're planning for, they will not be starting a week after you talk to your service coordinator, unfortunately. So Christine, how long is the transition taking right now?

Christine
Right. So I love the fact that your subtitle of today's event is "don't give up." Okay, so I just want to sort of thread that theme, right, as we're talking about timelines. And I do agree that it's important to manage expectations on this, right. So as of today, okay, I know this is going to be maybe recorded and on the web for a long time. So as of today, I am letting folks know that the time from orientation to when they actually enroll and begin receiving Self Determination Services is probably on average more around the eight-month mark. Okay, so there are some folks that I have spoken with recently that are maybe closer to the six month, maybe because they didn't have as much negotiation happening in that enrollment process. And then I actually just spoke with someone that is closer to the year mark, very -- fingers crossed -- very close to being enrolled, but it is, you know, six months to a year, probably eight months right now with the way the system is.

Lindsay
Right. And we did have one clarifying question from Rebecca, she just said is the orientation through regional center?

Christine
So I have the honor of being able to take the lead on the State Council on Developmental Disabilities/contracted with DDS to run statewide self determination orientations. It is a one-time, two-hour orientation. We have been running them in English, we run them in Spanish with a Spanish trainer, Spanish speaking trainer, no interpretation needed. And then we have also been running them in other languages with simultaneous interpretation. The languages that we have been putting them out in are listed on our website in the resource materials, but some examples are Vietnamese. We're going to be doing Arabic, Farsi, Hmong, Chinese, both Mandarin and Cantonese, Armenian and, and that is not exhaustive, okay, ASL, and others. And so we're really wanting to bring the orientation to all of the communities and the rich cultural communities and language communities in the state of California. There are some regional centers that are still doing their own orientations. So sometimes folks are confused, because some regional centers might have a two part, and you have to go to both parts to be able to get a certificate from them. And so when I issue one, people get a little confused. And sometimes even the service coordinators are saying, where's part two? So you can always reach back out to me if you have questions. But so the short answer is, regional centers and State Council are both running orientations. They may look a little different. And we try, we are running them far more frequently through our state council orientations. So if you're unable to make one of the regional centers, I think sometimes they're weekly, sometimes they're monthly, depending on their capacity. We are running them weekly and beyond that, for different languages. So.

Lindsay
I can personally attest, so taking the State Council orientation, it is fantastic. I went in there, you know, with many questions, and you know, and felt really good and excited afterwards. And with all those languages, Christina at the State Council will have you covered, so. And speaking about regional center, obviously, I mean, how does because I don't think a lot of families especially starting, they don't really understand how this might affect their relationship with regional center. So how does our relationship change? I mean, are we are we ever going to speak to our regional center service coordinator again? And how does that work, Christine?

Christine
Yes, yes, you will. So, gosh, this is a big mythbuster. This actually comes up a fair amount in our orientations where folks think that somehow self determination means they can ditch their regional center and their service coordinator. And it actually isn't really, it couldn't be farther from the truth. The reality is that we encourage folks to really link arms, you know, with your regional center and with your service coordinator, because there's a really good chance that your service coordinator while they have been trained in self determination, unless they are a dedicated self determination service coordinator or in maybe a dedicated unit that does exist in a handful of regional centers, your service coordinator is very likely going to be learning alongside you. And there are supporters, and there are a dedicated staff at each regional center to kind of help push in support to you and your team as you're learning. But I really do let folks know that, you know, this is the time to build those bridges, to repair maybe some bridges. And to know that really, this is a pretty important partnership, especially as you're in those early stages. Right? So I think that possibly that myth began, when really thinking through the supporters that you're able to pull into your life in self determination. And so your relationship with your service coordinator might be a little different if you have maybe a different point person that you would contact. Right? In the traditional model, your service coordinator is your go to, for really everything. In the self determination model, it might be your service coordinator once you're enrolled, or it might be someone else. And I think that may be where that's coming from. Whereas if someone else has maybe chosen to use a paid or unpaid facilitator or other supporter, that person might be their go to in self determination. It doesn't mean the regional center is not in the picture, it just means that role might change. But again, that is a very individualized and personal sort of setup when someone is in the program.

Lindsay
Well, and that's actually a perfect segue to my next question. So I mean, the good news is there are people who can help, you know, support this transition, as you just said, Christine, and we know, we know how busy parents' lives are. So introducing something new and taking on more responsibilities, right, we hear the stress, we get it, and you don't have to do this alone. So let's start. Obviously, we have a lot of questions about independent facilitators, or IFs. We might, you know, use that to shorten it. But Christine, what do IFs do? And how can they help families with this transition and beyond?

Christine
So I'd like to start with the fact that I recognize that the role of an independent facilitator can be confusing. And I think that this is because they can or should be really anything that you need for them to be to help support your self determination program journey. And that is going to vary for each person. Right? So I think that's where that's coming from. The official definition of an independent facilitator is actually contained in a self determination program service definition resource, okay. This lives on our website, the State Council on Developmental Disabilities under the orientation handouts. It also, of course, lives on the DDS website, and the service definition listing, okay, it's 27 pages, don't let that scare you. Okay, it is searchable. It is alphabetized. And it is definitely worth reading. Okay, so you don't have to do it all in one day. Remember, you are going to have some time as you're planning. So maybe fold that into, you know, research or keep it live on your in your Google Drive or something like that, so that you can kind of make your way through because that service definition resource is going to have quite literally the definitions for all of the services and supports that can be used purchased in self determination. Okay. And I say all of that to say that the official definition of an independent facilitator is contained in that resource. Okay. So really, in short, an independent facilitator is a person paid or unpaid, potentially, who is there to support you in your journey, right? This person may be one that you hire, and we'll talk about this probably in the next few questions, so I don't want to get too much ahead of it. But you may hire an independent facilitator to help support your self determination, person centered planning foundation, right? That person is a person centered planner, but they're also an independent facilitator. And then some independent facilitators, that is what they do. Their specialty is person centered planning. And if that is the case, and that is who you hire, and you need someone to also help guide you through sort of the rest of the enrollment process, then you may need to hire two independent facilitator ers, one who's going to run your person centered plan, and one who's going to help guide you through the remainder of the enrollment process. Right, then other independent facilitators kind of they do at all. So I think that again, this is based on who you choose to work with you. And that is, of course, based on lots of different things, right? That may be language, that may be culture, that may be preferences, it may be their experience in you or your loved one's stage of life. There's a lot of reasons, right, why you would choose a particular independent facilitator, but that is the short answer, okay, of what an independent facilitator can do or be. And then once you enroll in self determination, let's say eight months down the road, okay, if you choose to continue to use an independent facilitator, that could be also a different person, it could also be your service coordinator, at no cost, to help guide and direct you and be there as a resource along the way. So there's a lot of different, you know, it's not a person that has to be an independent facilitator. It's someone that's taking on that role for you, or your loved one in the journey.

Lindsay
I think that's really important, Christine. There's options because you hear something and you think, maybe they fit into one bucket. And you did mention cost, right? There could be cost, it could be no cost, which is another big question I know that families have. So there could be families worried if can they support this? Maybe they do want somebody that is not their service coordinator, right, just to give a different perspective. So there are funds available to help families, so what what do families need to know about that?

Christine
There are funds available. Thank you for saying that. I really emphasize that in the orientations. Because really, after you're in orientation, and until you enroll, sorry, I use hands. This this eight month period, no, I don't know how long it's going to be.

Lindsay
Me too, I'm a visual talker too.

Christine
So that process, right, there are funds available through your regional center to help you get enrolled. So I am not going to dive deep into the different options that exist, we can provide a link to the DDS directive that actually states very explicitly the number of dollars that are used for what kinds of services, but at the end of the day, go through your regional center, right, don't pay out of pocket until you connect with your service coordinator and you figure that out, okay, because I know that there are folks who have signed a contract with an independent facilitator, and they have not sort of cleared it with their regional center to be able to assure funding. And that is not a position that I would want anyone to be in. So I always just tell folks, yes, there's all these little nuances about, you know, funding and payment, and in some cases, reimbursement at that stage of transition. But I just tell folks, please don't sign anything. Don't contract with anybody until you are able to connect with your service coordinator or your regional center to find out the process and essentially have them involved in that. And the short answer is please don't do that without first checking in and having your team on board with that.

Lindsay
Absolutely. The support is there for you. So make sure you check in before you do any, that was perfectly put Christine. And Vidya, excuse me if I mispronounced your name, she just asked what my next question was going to be, which is how do we find independent facilitators?

Christine
Yes, so we will get a link in the chat. Okay. There are a lot of ways you can find independent facilitators. So the the the one you can do while we're talking right now is actually click on the California SDP network, there's a website okay. And that network has filters available so that you can choose which geographic regions they serve, any special ages or skill sets that you prefer an independent facilitator to have. So that's where I've sent folks first. And quite frankly, I think that's where most of the regional center service coordinators are sending folks to based on some of the email interactions that I've been a part of. Okay, so that's a really great place to start. I also will take this time to encourage folks to start attending your local volunteer advisory committee meetings. Okay, I know it's a handful. And there are a lot of acronyms that people use for that committee. Okay. But it is a self determination, local volunteer advisory committee, they exist in every regional center, their meeting structure, whether they're remote, or whether they allow dial in or whether they're in person, that might change a little bit based on your Regional Center. We can put a link in the chat to help you find your local volunteer Advisory Committee at your regional center. But I really recommend people start attending those as much as they can. And here's why: you're going to learn the people that are involved at your Regional Center in self determination, right, you're going to meet all those different titles, and managers, and coordinators, and specialists at your regional center that are really tasked with making this program a success. Okay, so that is huge. And being able to get those contacts and know who you can pull in for support. The other thing that can happen at these meetings is that you are going to hear hear from people, you're going to meet independent facilitators who are connected to your local community, right, you're going to meet families who are in self determination, and you're going to hear the kinds of services and supports that they've been able to benefit from. You're also going to meet people that maybe have not had the best experience and are experiencing some different barriers in your particular regional center area, and how they're working on fixing those barriers, right, you're going to hear the services, you're going to hear sort of The Good, the Bad, and The Ugly, all in one place. In addition to being able to get those really up to the minute updates on the program, how your Regional Center is doing things specifically at their regional center, it just really gives you a good lay of the land and allows you to start dialing into the SDP community in your area. So those are the two ways that I think are great for folks to really start finding independent facilitators, finding community providers, right, getting to know your community, maybe jump in on a parent support group or other local community options, that will just help you become more informed as you're in that process. Right. The other thing that I would like to mention, this just happened last week for the State Council, but my agency, the State Council on Developmental Disabilities is tasked with holding and facilitating the, it's another acronym I'm sorry, folks, the statewide self determination Advisory Committee otherwise known as the SSDAC, okay, this is made up of the chairs, or their designees, of the 21 different regional center local volunteer advisory committees. So what happens in that meeting is you're getting all of the information statewide. Typically, it's the barriers and the problems, okay, don't let that scare you. Because their role is to really take that information in, synthesize it, and then make recommendations to the department DDS on how to make the program better. Right. So that is, again, it's a public meeting, and you are welcome to join in, and kind of, again, learn more about the program and what's happening statewide at that level.

Lindsay
That's fantastic. So everything from your, you know, immediate local community, what are parents saying? What's your regional center saying? All the way to really looking at what's happening across the state, which, again, comes back to the theme of don't give up, like, if you're there, if you're frustrated, whether that's because you're waiting, or you're, you know, you're not sure what's going on, or you're having issues, you know, with the program, there's people are actively, you know, always many people coming together to work on those barriers, and the reality is, there's just so much demand. And so, you know, that's what it feels like, right, Christine? The program is just trying to grow as fast as, you know, the demand is because parents and families are moving in, you know, right, in huge numbers, which is all a good thing. So I'm we're in, what, like year two post pilot, and so you know.

Christine
It's three.

Lindsay
Is it three, is already? Oh my gosh, I have no sense of time since post COVID.

Christine
We're getting there. We're getting there. 2021, and then yeah, we're well feels like year three, for some people that were in the phase in its third year.

Lindsay
Yeah. Right. And so I have one other question about IFs, so can we change independent facilitators at any time during the year?

Christine
Theoretically, yes. Okay, we do have a sort of a capacity issue, right with some of the different supporters like the financial management service providers, which I think we'll talk about soon. And those independent facilitators, some of them have waitlists. And so that is definitely something to consider, based on, you know, who you're planning to hire and have support you along the way. So theoretically, yes, you can change. However, keep in mind that some folks do sign a contract. And so if you're actually signing a contract with someone, then you have to know what your responsibility is to that contract. Right. So keep that in mind as you're arranging for services. There are some administrative responsibilities that might come with making that change. If you're making the change before you're enrolled, you know, pull your Regional Center in because they would be the ones probably funding for that service. And so you know, asking for them to help support that change. If you are planning to maybe utilize your service coordinator and some of the same functions as an independent facilitator at no cost after you enroll, and you decide that you need maybe a little more support, and you realize that you need to hire an independent facilitator, then, you know, you could theoretically update some of the other components to your SDP plan in order to then maybe be able to hire someone to help you navigate. So yes, you can change. There might be some administrative responsibilities and burdens that come with that. There might be some delays that come with that. But yes, you should be able to choose someone that is truly working on, you know, for you, and is supporting you in the way that you expect for them to support you.

Lindsay
Absolutely. And, you know, one huge thing that they can help us support. Let's talk about some of the fun stuff. Let's talk about budgets. How are budgets determined, Christine?

Christine
Yes. Okay. So can I just add one more thing about how the regional centers are also offering supports for families that are transitioning? So if I can just add in, there are some regional centers that are offering self determination program coaching, or kind of independent facilitation, I don't know if I'll call it sort of light, right, in certain ways to be able to help, again, increase access and help with that transition process and timelines. That funding sometimes is coming directly from the regional centers. But more often than not, it's actually coming through those local volunteer advisory committees, who have been given, who are given implementation funding. So they are putting out implementation funding into their local communities, to again help increase access to self determination. So that is something else to consider. If you go to those local meetings, you might be hearing the kinds of implementation funding that is available in your community to help you get enrolled.

Lindsay
Fantastic. Again, just one more resource. So you don't feel like there's only one direction you can go. There's lots of buckets for you to explore for that support.

Lindsay
All right, so budgets.

Christine
Budgets, yes. Okay. I wasn't trying to put it off, it's a great conversation. How budgets are determined. Okay, the million dollar question, pun intended, is the budget that you are going to be initially given by, from your regional center to you when you're starting this planning process is the starting point. Okay, I like to affirm that from the beginning. And that, generally speaking, this is going to be a process of negotiation. Okay. So your budget is determined by the amount that the regional center has spent on your services in the last 12 months. For those of you that are brand new to the regional center, or have not been with the regional center for a full 12 months, you will be taking that initial IPP with your goals and your services and the expected services that the regional center would be paying for your next year, and they will kind of calculate that out for that full year. Okay, so your base is going to be what you've used. I know that can be scary for folks, because while you may have more services authorized than you're using, the conversation about the gap should be happening at your person centered planning meeting. It might be multiple meetings, okay. Sometimes it's not just a one-time meeting for that person centered planning process, because it is a life planning process. And that, certainly, we don't want to rush that. But generally speaking, that conversation about oh, no, I'm only using seven hours and I was authorized 20, my starting budget is going to be based on seven, yes, it will be. Okay. But the conversation about those needs, possibly unmet needs, and why you weren't able to use all those services will be occurring as you're laying the foundation for your self determination plan. Okay. And then from there, it really is a budget negotiation, as you are maybe adding to or considering those other needs, considering expenses for services, because now you have some new goals that you that weren't in your last IPP. So that's the exciting part about really building your personalized IPP and plan. What does that look like for services and supports in the future? And is there going to need to be more funds available to you to be able to then purchase those services and goods? Right. So I, I won't complicate it more, but that is the starting place for your budget.

Lindsay
Right. And I think that's the most important thing to repeat is starting place, just like Christine said, right? And there's, you know, and I want to get to a lot of, you know, the ways people need to think about budget, because I think families, you know, they really, they're coming from that traditional regional center model, which, you know, there's a very specific way that you can look at what services are there and how they're delivered. And so what services or categories should families consider when discussing budget, knowing that every individual and their needs are unique, but what are some things that we may not realize can be covered under self determination? How do parents kind of break out and think about things in a new way?

Christine
That's the fun part. Right? So I am, you're gonna hear this from me a few times today, folks, that self determination program service definitions packet, okay, that 27 pager is your friend, okay, that will list definitions of all of the different types of services that can be essentially purchased under self determination. Okay, so that is your friend. Examples, in folks that I have worked with and know in this system, examples would be exercise equipment, homemaker services, safety devices for home, transportation, but specifically like paying a family member or a neighbor, maybe right, if that of the generic resources are not working for you, or Uber or Lyft, office equipment, employment supports for coaching, life coaching, I mean, the list really does go on for quite literally 27 pages in that document. And I'm gonna keep pointing people back there, because I think it is a really underused, amazing resource. And as you are reading through that, maybe you maybe you go through that before you even do your person centered planning just to kind of trigger, gosh, you know, I didn't even consider that that was an unmet need. Right. So I just tell people really get get familiar with that document. Because there's some really special, very individualized and personalized services that are working for folks out there. The other thing I like to say is that while there are reasons why certain services would or would not be like approved, the general rule of thumb is if it is provided in the community, to really anyone, if anyone who has access to that service or support or program, then there's a really good chance that it is going to be something that is approved under the self determination program. Right?

Lindsay
Can you say that one more time, Christine?

Christine
Yes, I can. So if the service or support that you're looking at purchasing or using, okay, is available to your local community, right, it is not disability specific, it is available to really anyone, then there is a really good chance that it will be covered. Right? It is those programs that are really disability specific and may, you know, may or may not be, and I'm not -- for the sake of time, I know we can't go into that today. And that's not the purpose of today. But we can include maybe even a link so that you can maybe become familiar with what an assessment process if you're looking for a service or support that is very specific to only people with developmental disabilities.

Lindsay
And we're I know, we're getting some questions about some just specific examples. You know, and I know we had kind of talked about before, people can send their questions ahead of time, we had a lot of questions about like van conversions, lifts, features around your home to make it accessible, specialty car seats, like you were talking about safety features. Are those all things that are in those 27 pages that could be a possibility?

Christine
Yes, I think it's the last one under V for vehicle modifications. There is a definition of vehicle modifications, of course, there's some safety components and things like that, that are of course included in that definitions. And remember, it's searchable. So if there's a key word that you're thinking, if you put that in your search, you can kind of pop through the document to come up with it. But yes, vehicle modifications and other things like that, there is a definition available. And again, so long as you really have that conversation in your person centered planning meeting about the need, and if you have the money in your budget, right, then you should be able to put it together and make it work.

Lindsay
Right. And Rebecca just had another question about, she said, Could you get a therapy swing for sensory needs under self determination?

Christine
Okay, so I let folks know that the terminology that we are used to using in the traditional model, or even in the medical traditional model, generally things always have the word therapy, right? Now, that may be covered, you'd need to look at that service definition, okay. But in self determination, sometimes there's just a different way of, of phrasing it or calling it that still supports that person sensory needs without maybe attaching the word therapy. Right. So I think that again, look through that service definitions, and just kind of call it what it is. If it's not really therapy, but it's for sensory, or it's for motor integration, or it's for community engagement, or it's to be able to help that person, that participant better engage in their community life, then, you know, that's what you would call it. So I always tell people, just, you know, consider the word therapy before you, before you ask for it as therapy, because sometimes folks can't get past the fact that it's therapy, even what you're looking for, isn't. It's really a supportive service.

Lindsay
And I will say this, this is not coming from Christine. But you know, and thinking about like, because if it's presented as something that says therapy, then it could be considered that maybe your insurance or somebody else would pay for it. So just to think about what you need. And that isn't about being sneaky. It's just about like looking at that service model. And because we use all kinds of language that we know what we're talking about, but can be perceived in a different way. So again, it's going back to that manual and, and making sure that what you're thinking is actually aligned with what is provided. And I had another follow-up question, talking about that list. Can all of the services on that self determination services list be utilized in budgets at any regional center? And I asked that because as we all know, there can be, you know, disparities about what's covered at at specific regional centers. So is that something that if it's on that list that parents should be able to use that talk about that list during their meetings with their regional center?

Christine
Yes. The waiver, yeah, it's it's actually through a federal waiver. Okay. That's through the state. So it has that list of service definitions, okay, has gone has been approved. So it is indeed, meant to be available for all in the state.

Lindsay
Okay. So again, just another really important resource as you're having that conversation. It's always nice to have something that you could have right next to you that says, well, actually, you know, it's on this list. Let's talk about it. I also wanted to bring up something that we hear over and over again, we frequently hear "all I get from Regional Center are respite services," right? Or all my child gets are respite services. Is it worth it to transition if those are the only services that a client receives?

Christine
Right. So, I mean, I'm not going to say yes or no, because I don't know the number of hours and what the needs are, okay. But I will say this, that your money will go further in self determination than it can in the traditional model. Okay. So I will give you round number examples. Okay. Do not hold me to this, anybody. All right. So let's say, let's say, round numbers, the regional center is giving a respite vendor $50 an hour. And then your respite vendor is then paying your respite provider at minimum wage, right. So the extra money in there is going toward overhead, right? The management, the staff, maybe there's a registry, the benefits, things like that are all in that extra kind of chunk, right? So $50 an hour, let's say your respite worker's making $20. Okay, round numbers. So theoretically, you have $30 an hour to work with that can go to maybe boost a benefits package, or maybe you double their wages and still have money available in your budget to be able to then maybe go and purchase another service or enroll in another community program. So that is where a very, very small example of how your money can go further, right. So even if you just have respite, your money is going to go further than it does in the current traditional model. And it may not be depending on you and your budget and your loved ones' needs and the number of hours, it will maybe you'll be able to get an extra service. So you can handle respite. But you can also maybe enroll them in, you know, horseback riding or swimming or something very, you know, community integration, something really special. The other thing, if I may, I would like to insert that it's important to think through the fact that your budget, the things that go into forming that dollars and cents of your budget, your spending plan, the way that you spend that money is not linear, okay? So respite in does not mean that it has to be respite out. Respite in could be someone else providing transportation services, and five other programs. That is, it is doing a few things, it is maybe more meaningful for your loved one, to participate in all of these programs, and maybe have someone to drive them. And it's also giving you a break. Right? So instead of thinking through it very much like you are now, it doesn't have to be that way. It can be respite in and four programs and transportation out. So they're, you know, living their best life, right, working on meeting their goals, and you are also getting a break. So I just like to encourage people really, I know, it's tough, it is so outside of the box, but it does not have to be that way. It could be. You may choose to still have a few hours of that more traditional respite, right. But it can also be very different.

Lindsay
I mean, that was that was a beautiful example. Right? Because when you're thinking like say your child gets 20 hours of respite a month, right? How that looks in self determination can look very different, right, depending on that plan. And also talking about budget, what can we do if regional center denies part of our budget?

Christine
So what happens if regional center denies your budget? So, again, remember I mentioned the budget negotiation process? That's usually where there's a pause point in that enrollment. Let me just say this: your rights are the same in the traditional model as they are in self determination. Okay. So at the end of the day, if you are at a negotiation impasse, and the dollars and cents in your budget from the regional center that they're willing to authorize are not going to meet your needs, including the health and safety of your loved one, right, you just don't think that that is going to work, you can appeal. So that process, of course, can take a little more time. It's ideal if you can negotiate and get that set. But at the end of the day, you do have the same rights, the right to appeal, as well as all of the others in self determination. And so if you are a part of that, and you don't think that that total budget can work for you or your loved one, then of course, you always have the right to appeal.

Lindsay
Absolutely. And we had a follow-up question to our respite example. And she asked, Can you use respite to have someone go places with you and your child to help?

Christine
Well, so let's think about this. In self determination, it doesn't have to be called respite at all. So what is that? Right? If it's community integration, if it's socialization opportunities, if it's, you know, a personal aide or support for that person while you're out in the community, then it could be called sort of all of those things in the community integration definitions. So great question. But you know, outside the box, right, it doesn't have to look like the traditional model. It can, it doesn't even have to be called the traditional model, it can be called the self determination model, and whatever that is that is going to help meet that person's goals.

Lindsay
Thank you. I just I really, I thought that was a great question just also to drive home the fact that, yes, respite has to look a certain way in the traditional system. It doesn't in self determination, right? And I know you have a hard out at 2:00. And so I did want to ask, because you mentioned spending plan, and I think it's really important. I didn't know if you wanted to expand on that at all. Because once we have an improved approved budget, then we do move to the spending plan. So what is the difference between budget and spending plan?

Christine
Great question. So a budget, just keep this in mind, the budget again, those dollars and cents, dollars and cents, right, you're going to see the dollars and cents that you have to be able to spend on services throughout the year. Right. So the regional center does have to certify that budget. Right. So there is an approval certification process that happens. The spending plan, the regional center will review it to make sure that the services and supports are essentially covered under the self determination program, and that you've been able to access any other free or low-cost or generic resources along the way. But the spending plan is essentially how you're going to take that budget, and break it down, and spend it. So that is where you would put, you know, a personal aide, maybe you know, aide services while you're out at art classes. Maybe that's also going to be a you know, an item for your art classes and how much that costs. It could be supportive staff that are coming in to help with personal care services, and how much you have, you know, set aside for that. So it's really the spending plan is how you're spending your budget money.

Lindsay
And can the spending plan change throughout the year?

Christine
Yes, the spending plan can change. If your budget is the same, right, you're just still under your budget, and there are maybe maybe a service you thought was really going to work isn't working the way you thought it would be. That's okay, it's life, right? So you may need to adjust the spending plan throughout the year. So long as it's still under that budget, you're coming in under budget, then that process is easier to navigate. In the event though, that life happens or there's an emergency or there is a need that came up that was not considered when you were negotiating that budget, then again, you have the same rights, and that right would be to have probably an urgent IPP meeting, discuss the need, maybe add a goal to your IPP attach a dollar amount to that. And then again, your budget would increase and then your spending plan would have that new service added to the plan. So that can of course happen at any time in the year in accordance with maybe any emergency or, or new needs that come up that weren't already considered. So it could happen sort of both ways. Right. One is not adjusting the budget and just adjusting the spending plan, which is a yes. And then there's the we need to meet and have a conversation patient about maybe a new need that maybe needs a little more money attached, which then will be updated in a spending plan. Great.

Lindsay
I saw that coming in. A couple parents were asking that question too. So hopefully, that answered your question. If not, shoot anything. And I knew we would like be running so close on time, though, we do need to touch on financial management services. So which will, you know, you'll hear us referred to as an FMS. So Christine, can you explain the role of an FMS, what do parents need to know?

Christine
Yeah, so the financial management service provider is the one that is essentially going to be receiving the money for your budget, and spending, right, paying out all of your service providers for the entire year from your spending plan. So they are the holder of your money. It doesn't come through like a personal account, right? And they are going to be paying for all of your services, 100% of your services in self determination are going to be paid out by your financial management service provider. That is the really short answer of what an FMS is, they are obviously a hub in self determination. Because there are so many moving parts in self determination, if I can just insert my own sort of advice, would be you have the regional center, they're sending the funds directly to your financial management service provider, who are then going to be paying out over you know, the year from your budget in accordance with your spending plan, it is really important to find a way to have really open communication, preferably in writing, I would definitely recommend emails, okay, between regional center and FMS, and if you have a supporter person in there, or agency in there, pulling them all into written communication is key. Because there are unmanned inboxes at some places, you know, things go and the emails have been sent, but no one realized it was over there, and people are out on leave and you know, life, right. So I always just say that really keeping good, open communication with your regional center with your FMS, and if you have an independent facilitator or other supporter, really keeping them all in and the participant in on written communication, if there's ever anything that that's needing to be negotiated or changed, to make sure that everyone is on the same page. That's really important, I would say that a huge number of communication issues are because not everyone was on that email stream. And so that would be my advice. And maybe being able to avoid some of the barriers of the pitfalls that have been happening to folks is to just make sure that that communication is thorough, and it includes all the right people.

Lindsay
And they're paying your people. So communication is important because you know, and because they're the ones that are paying your people, they're getting those services. So it's you know, it's vital. And I know it's 2:00, if I could do really quickly, because I think this is a really important point and also scary for parents, if we don't spend all of our self determination funds that we have been given any year, do we lose them the next year?

Christine
So every year you are going to meet for your IPP meeting, you're going to have a conversation about your services, your needs, you will have an opportunity at that time to maybe identify additional goals. Or you can have that same conversation that maybe you had at the start, which was, you know, an unmet need, right? Maybe you had money in your budget. And while you didn't use it, you can detail why you didn't use it, but it's still a need, you're still planning on being able to pursue or hire or whatever it is. So again, that conversation about needs/unmet needs will happen every year at your IPP meeting. So yes, in theory, if you didn't use it, it will be up for discussion. But it should be, you know, a robust discussion about why you didn't use it. And again, what your needs are, are they met with less money? I mean, the beauty of the pilot is that folks found that over time, over time, they were able to really streamline their services and ultimately, they may not have needed the entire budget amount as much right? But over time. So if that happens, it may be because your needs are all being met, and then some, right, to meet your needs and your goals in your IPP for maybe less. And so maybe it is a cost savings that you don't have to feel like you have to sort of like, fight for that extra. But if it is an unmet need, then that conversation will happen and should be happening every year at your annual IPP.

Lindsay
Thank you. Thank you. And I also, before you jump wanted to give a shout out, because if you're watching this, and you're already part of the self determination program, the state council needs your input. Christine, do you just quickly want to tell us about the evaluation that you've just released and how it can help the program? I know Donna is sharing that link in the chat.

Christine
Thank you, Donna, and thank you to your team, your admin team for helping the chat and keep the conversation going. We appreciate hearing from you all. The State Council, based on statute requirements, so the law requires that state council and our federal partners Disability Rights California, and the university centers for education on developmental disabilities, specifically UCLA, and UC Davis, were involved in the self determination program. Essentially, it's a satisfaction survey. Okay. And it happened over a period of time where there were focus groups, and there were some online surveys. And some were open ended. And some were more, you know, kind of checking of boxes. There were three different phases of this survey. And we are proud to be able to share that it is posted publicly on our website. It is a report that our agencies produced and provided to the legislature for review of how the program is meeting the needs, as well as identifying areas of barriers or problems, and ultimately how to make maybe the program better. So there are some recommendations. So you'll be kind of seeing it all in that program. We do have it translated into different languages, including a plain language version of the executive summary. And we're really proud of that, we really want you to be able to read that, again, another great way to start kind of plugging into the self determination community, and what is happening, what people are saying, and maybe even learn from some of the the barriers, or the slowdowns that have occurred for others along the way.

Lindsay
Perfect. Great. So I know we shared a lot of links, you know, check those out. And thank you so much, Christine. I mean, I know we barely scratched the surface, we can literally talk for days, you know, you've done such a fantastic job of laying out some of these major expectations, possibilities and facts. So if you're contemplating transitioning to the self determination program, please again, check out the State Council orientations. Donna's going to reshare that link in the chat, they go in depth about everything you need to get started, sharing all the resources that we've talked about and more so you know where to get your answer. So thank you for your time, Christine, I know you have to run. But thank you for all of the innovation and the dedication that you've given and that you continue giving our community. We're so grateful.

Christine
Thank you so much for having me. And I just have to say I may be here in person, the one sharing this, but you know, there's an amazing team of managers that are throughout the state of California in the State Council on Developmental Disabilities that are covering the local advisory committees, they're they're the designees, they're the representatives, and they're the ones that are bringing this information, you know, statewide. And so thank you for having me, I'm hoping that I'm channeling all of their expertise in this process. And just really appreciate it, and again, folks don't give up. There's support. There are resources, I'm certainly offering myself as a resource, our orientations are a resource, but we really do want you to be successful. And we are happy to support you in whatever way that we can from our agency. So again, thank you for the invitation and for your patience today. And it's just really nice to be here.

Lindsay
Thank you, Christine. And for anyone else. If you want to stick around for a minute, we have some future future events to announce. If you're still feeling a little overwhelmed, confused, I'm sure there's still a lot of questions. Christine brought up so many good points. Believe me, you're not alone. It is a lot to process and weigh and dissect and plan. So if you still have questions after today, or you're looking for one-to-one support on how to navigate self determination, IEPs, IHSS, Medi-Cal, and more, our Undivided Navigators would love to help. They can help you organize all of those concerns and amazing ideas that are in your head and turn them into actionable step by step guides. So if you want to hear more about how we support families, we're actually having a virtual meet up exclusively for our Facebook group parents. Next Tuesday, October 10 at 10 a.m. Navigator Jen is going to be talking about the 10 biggest things that families are missing out on. So if you want to hear, just jump into the Facebook group at 10, and you'll see a notice to join our Facebook group chat room, just click on the link and join. And then if you want to talk privately, you'll have the chance to jump straight into a Zoom and talk to a parent Navigator and ask any questions you have about how Undivided can support your family. So if you're not already in our Facebook group, please join us. Donna shared the link in our chat, stop by, we'd all love to say hello, and don't miss our next Facebook Live. We'll be back here on November 30 with Undivided Public Benefits Specialist Lisa Concoff Kronbeck. She'll be covering all of your biggest questions around in home supportive services or IHSS under age 18. So Donna is going to put the RSVP info in the chat. Thanks again to Christine from the State Council and to all of you. Our mission is to support you so your children can thrive. And we want you to thrive too. Hope to see you soon.