Watch our Q&A with Undivided’s Public Benefits Specialist and Self-Determination Program Consultant as we talk about how families can prepare for summer services from Regional Center and the Self-Determination Program (SDP). This video covers:
You can also check out our recap of the highlights here.
Hi everyone, and welcome to Undivided Live. I'm Lindsay Crain and I head the Content and Community teams here at Undivided, and for my visual description, I am a female with a short brown bob, dark frame glasses, wearing a blue button down shirt. I'm sitting in a green office with bookcases to my right. We know it is a very busy time of year, so thank you for spending some time with us today.
Undivided is a digital platform and service that supports families raising neurodivergent and disabled children. We help families navigate the complex systems that our kids rely on, like education, private insurance, and public benefits like IHSS, Medi-Cal, CCS, the Regional Center, the Self-Determination Program, and more. So how can these programs help us this summer? Because it's almost May, which means summer is knocking on the door. That may bring relief, no more school stress, but it can also bring overwhelm, like what in the heck am I going to do with these kids. So summer doesn't always just happen for our kids. It takes planning, advocacy, knowing what's available and then figuring out how to access it.
So today we'll be focusing on how Regional Center and the Self-Determination Program can help us shape a summer that supports our kids and their parents. Camps, social rec, community aides, childcare, friendship building. How do we make sure our kids and teens have access? And how does that support look different in a traditional Regional Center funding model versus the Self-Determination Program? And for any procrastinators out there, is it too late to get things in place? We have two of my favorite people here to lead us through our options. Undivided’s California public benefit specialist, Lisa Concoff Kronbeck and independent facilitator and Undivided’s Self-Determination consultant, Iris Barker. Lisa educates parents about government programs that support our kids and families, and she actually loves walking people through these complex systems that give many of us nightmares. She is also the mom of a kiddo with Down Syndrome, and is herself an individual with disabilities.
Iris is the proud mom of three children, one with Down Syndrome. She is the owner of Bridge Builders California, where she supports families across the state in accessing the Self-Determination Program as a bilingual independent facilitator. So welcome to you both. Thank you so much for being here. And while we're talking about public benefits today, we are not out of school yet, so if you need support with your child's IEP or you're trying to wrap up loose ends before school is out but you aren't sure how, Undivided can help. Check out our new IEP Assistant. You can upload your child's IEP and in minutes, it gives you personalized recommendations on improving supports, accommodations, goals, or services, and if you need 1:1 support, you have access to a Navigator who can help you determine next steps. We also have thousands of free articles and videos.
Bookmark them and you have your very own resource library. Don't have time to read an article? Just ask your question to Andy AI and get the answers you need instantly. Andy will be your new best friend. And that IEP Assistant? We're actually very close to releasing an IPP Assistant to help with Regional Center needs. The IPP Assistant will work the same way that our IEP Assistant does, flagging areas of need, identifying potential services, and calling out anything missing that could better meet your child's needs, so stay tuned for that release this summer. Same goes for our 504 Assistant for school that is also coming soon. You can follow us on our socials or we'll let you know the latest updates. So resources, organization, supports, coaching, and a second set of eyes on vital documents all housed in our HIPAA compliant platform.
We value your child's privacy like our own, so you don't have to worry about their information being shared or sold anywhere. Plus, we have weekly office hours with experts like Lisa and Iris so they can answer your questions directly. You see that QR code in the corner of your screen? You can scan that and you can get started today. So with all of that, let's talk summer survival and how to make it happen. So Lisa, let's start with you. How can families go about funding summer activities via the traditional Regional Center funding model? Okay, so to start with, I would say any requests they're going to make, make them now, because it can take time for services to get authorized. And remember that services that the Regional Center provides have to be supported by goals in the IPP, so you want to make sure that your child's IPP includes all of your concerns and goals to address them. If you need to request an IPP, it needs to be held within 30 days, so if you start now, that still gives you the month of May to get that addressed.
To start looking for services, you can request a list of vendored providers from your Regional Center and also get a copy of the Regional Center’s purchase of service standard, which you can find on their website, because some Regional Centers, especially those that don't have a lot of vendored providers for social rec and camping are allowing parents to choose a vendor, pay for it, and then get reimbursed through the parent reimbursement process. Those services still need to be authorized ahead of time, so it helps if you start your search now and find out what your Regional Center’s policy is on that. Okay. And how would families find out what their specific Regional Center’s policy is? So every Regional Center on their website has their purchase of service standards.
Some of them have social rec included in the general purchase of service standards, and some of them have it kind of listed separately since they were restored since those... That funding was restored just a few years ago. But those policies should be on your Regional Center’s website, and if they're not, you can ask your service coordinator for it, but they should be listed. Great. And Iris, can you briefly explain how funding works through the Self-Determination Program or SDP for short? We might go back and forth between what we call it. Yeah. So, just briefly explaining what the Self-Determination Program, it is a voluntary option for Regional Center clients that allows them to receive the services in more of a flexible, personalized way, instead of using pre-approved services that they might have received traditionally.
Families have more control over what supports they choose, who provides them, and how the services are delivered. Each participant would get an annual budget based on, again, those services that they would typically receive in the traditional system, and then they could use those funds in ways that better meet their needs and goals, as long as they still abide by the program guidelines and they are also in sync with the person centered plan, or PCP, and also with their individual program... plan program... or program plan, I'm sorry, or IPP, and families would also have to choose a Financial Management Service, which is the one that is in charge of managing those payments, whether it's for employees or vendors. So that's how the funding would work in Self-Determination. --Right.
And we're going to dive... As we're talking today, we're going to... all of our questions we're going to be asking, and how does this work in traditional, how does this work in SDP, but I wanted to start with kind of a general question for each of you. What are the most common mistakes that families make when requesting summer services? Lisa, let's start with you. I think a big one is waiting too long to make the request. If it's already almost summer, it may be too late for things, at least in the month of June or July. Asking for things that aren't supported by IPP goals, or things that can’t be covered by the Regional Center. Not being aware of the range of services available and sort of leaving resources untapped that your child needs for support.
And then, Iris, do you want to add anything? Yeah, I would say in the context of Self-Determination, SDP families need to confirm that this specific vendor’s camps are willing to work with your Financial Management Service. We have some services that do not want to receive third party payments. They only want cash or they work a little bit differently, so they need to make sure that that happens. Otherwise that's going to be an obstacle right there and it's going to cause delays, but also at times, families don't think about the appropriate level of support that their loved one will need, such as one-on-one that needs to... or an aide. This needs to be requested ahead of time for funding purposes, and also, one more thing is check in with that specific camp, whether they would allow an outside person to come in and support that participant.
Yeah. And I want to... We're going to talk about aides in a minute. That's one of the biggest questions that we got. Really good point about if they even allow someone to come in and support, because a lot of times we hear from families right there is a limit on how many adults can be there, so there's is a lot of... There are a lot of factors that can go into supporting a lot of our kids in different ways, so... but I'm an eternal optimist, so hopefully it's not too late. A lot of camps are full, but there are still options, as Lisa and Iris are saying. One of the biggest barriers is trying to get in to the... to some of these programs if they're already full, but Iris, I also wanted to just ask another general question because we did have a lot of questions come in with RSVPs about what is the right age to start their kids on SDP. Can you respond to that?
Yeah, I feel that there's no right age to start Self-Determination. Families can participate at any stage of life, from early childhood until they're adults. I mean, later... the adult life, it doesn't really matter as long as they are Regional... or they are eligible to receive Regional Center services. For children under age three, there's a specific eligibility criteria, so I would just check with their coordinator with the Regional Center directly. I would say that what I tell my families, the best time to transition or to look into tapping into Self-Determination is when they are ready for the added responsibility that comes with it, with that right of managing the services, and also if they want more flexibility and control over the services, how they get delivered, how they get paid and whatnot.
Also, another thing that I typically will tell them is if you are really happy with what you're receiving from the Regional Center and how the services are being delivered, your vendors and everything, maybe this might not be a great option right now, but if you want more flexibility and be able to customize a little bit more, then SDP can be a really good option. Right. And talking about how that flexibility and how summer schedules can change a little bit, Lisa, are there any restrictions... We had a lot of questions about this as well. Are there any restrictions with summer programing if a child is enrolled in extended school year or ESY? Yeah, so as we've all been told countless times, the Regional Center is the payor of last resort, and also they're not going to allow a duplication of services, so if you're enrolled in ESY, you're not going to be able to get camp or extended... or what they call ESY hours on specialized supervision during the time that your child is enrolled in ESY, but ESY generally only covers a portion of the summer.
The school district only covers a certain number of days of ESY and the summer is a lot longer than that, so what you're looking for from the Regional Center is to sort of fill in those programing gaps when ESY is not in session. Right. And Iris, what about Self-Determination? Are there any restrictions around ESY? Yeah, so I would say the same general rule about avoiding this duplication of services during ESY time, hours, still applies and the Regional Centers typically will not fund for summer programing during those times, but at the same time, in Self-Determination with the flexibility and more control that it offers, as long as it is in your spending plan and it aligns with your IPP and PCP goals, the families can decide more how to allocate or use the summer programing, so there's definitely more flexibility in Self-Determination, not the way it’s funded into the budget, but definitely in the way that it's allocated in the spending plan and ultimately used.
--Got it. And I know I just said I am the eternal optimist, which I am for some things, but it is almost May, so I guess just kind of what we've been talking about, but sort of bottom line, because a lot of people were saying, “I haven't done anything yet,” but if we haven't set up our child's summer yet, say... Let's be specific. If we're thinking about camps or classes, is it too late? Lisa? No, no, I wouldn't say it's too late, but you want to get the ball rolling now, because you've essentially got two deadlines to meet, right? One is you have to request the services and get them authorized, and two is that a lot of camps start enrollment now or have already started enrollment, so they may fill up. So it's not too late, but it's going to be... it's going to get to be too late soon, so get on it now.
--Okay, so what... Just to underline that, Lisa, what do families need to do right now if they want to find and fund that camp for summer through the traditional...? Like I said earlier, find out who the vendors are, get an idea of which programs you're going to be requesting, make sure that you have approached the camps to find out... and we'll talk a little bit about this later, but you want to make sure that you've done your homework by the time you come and talk to the Regional Center, right? So if you're going to be asking them for something, you want to already have checked with the camp to see if they have that support, or if it's something that they might say, “Oh, that needs to come through insurance,” you've already gone to insurance. and... so start that now if there's something that you might need from insurance under support, start that now so that either they can cover it or they can issue a denial that you can then take to the Regional Center, because again, the Regional Center is the payor of last resort and they're going to want to see that you've exhausted all the generic resources first.
--Right. Always. And Iris, just same question to you. Is it too late for camps and classes for the Self-Determination Program? Yeah, the same applies for Self-Determination. I would say the earlier the better. If a camp needs to be added to the budget, let's say that the particular Regional Center said that until they actually apply for the camp, it’s out for their specific year, we can't fund it, and they need to add it then to the budget, then we need to do it right away, present it to the Regional Center as depending on the Regional Center, it could take several weeks for the process to be completed for this budget amendment, but now, if the funding... it's already in to the spending plan, the name of the camp is already in the spending plan, then families should still follow up with their Financial Management Service and make sure that this specific provider is already either onboarded with the Financial Management Service of this family's choice, or if they can provide a one time payment for this specific camp, so really at this point, time is of the essence.
We have to make sure that those things are in place and if any pre-payment of this is approved by the Financial Management Service or there's something else that they need to do to get those authorizations going and everything going now. Well, that's... I wanted to ask something specific about that, Iris, because the beauty of Self-Determination is that we can pick any camp, right, not just those vendored with Regional Center, but just like what you were touching on, one big issue that we regularly hear is that most FMS’ pay after a service is provided, but camps require money before they start, so... and I know that's kind of what you were just touching on, so how can parents use SDP to fund camps if they require payment ahead of time?
Yeah, prepayment may be possible, and I would say typically we’ve seen that it's obvious, right? Regional Centers understand that this is how it works, even for any typical individual out there, so they need to provide... For most Financial Management Services, they need to see this written, that there's an approval from the Regional Center, that it's okay for the Financial Management Service to prepay x, y, z camp, so typically that written authorization from the Regional Center will suffice. So again timing is of the essence at this point. It's very important that these families plan early and have those conversations with the Financial Management Service and the Regional Center to make sure that if that prepayment is needed, that the Regional Center will approve it or the Financial Management Service is going to process it. Right.
And just another quick follow up on timing, because we also had questions. For those that are right now in process of switching to SDP or even maybe even thinking about it, how long can that process take? Can they expect their budget to be ready for summer? Yeah, whether our budget pending planning transition will be ready in time for the summer really depends on where the family is in the SDP process. Again, timelines vary among the different Regional Centers and it's really dependent on the individual’s situation at this point. If it's a brand new transition, right, and they're just going into SDP, I mean, the process could take anywhere from six months to a year. I've seen it even longer. So it really just depends. And because of that, I feel like early planning, it's so needed, so essential.
And then just having those conversations with the Regional Center or in this case, if they have an independent facilitator as well to make sure that they set expectations and they understand where they will be at, if they will be able to pay for the camp or not. One of the things that I feel often some families are surprised about is that unlike the traditional system that we've seen some reimbursement for some of this social rec programing or summer camps with determination, there will be no reimbursement, so if the family wants to secure a spot for a specific camp and they're like, “Oh, I had to pay today, so I just paid and can you reimburse me? It's in my spending plan. It's in my budget.” Unfortunately, that is not allowable, so they won't be able to get reimbursement.
So again, planning ahead, I think, is the best choice here. --Got it. And I do see some questions coming in about respite and some childcare questions. We're going to get to that in just a second, so I'm not ignoring your questions. I wanted to kind of wrap up with camps because one of the biggest questions that we touched on even just a minute ago is about aides who... sorry, kids who require an aide at camp. So, Lisa, how can we request an aide through Regional Center? So it depends on at least partially on why they need an aide. So if it's for health and safety or for inclusion, you would start by checking with the camp to see if that's a service that they have the capacity to provide and support.
In some cases they may, but often they can... they do not have the staffing to provide a 1:1 aide. If you can get that in writing, if you email them and they email back, that's... you want to have at least some confirmation that they can't support, and then you can go and make the request at the Regional Center, explain to them that they need that service in order to participate in this program. If it's a behavioral aide, you may want to start with your existing behavioral therapy provider and see if they're able to support in the camp setting. Often that's coming through insurance or through Medi-Cal. Some plans will not allow home ABA services outside of the home or other behavior services. They say a certain portion of it has to be inside the home, so if you're able to establish that there is a need for behavioral support in the camp setting, but that insurance won’t support in that setting, you may potentially be able to request a service from the Regional Center, but you would have to show both that it's necessary and that it can’t be provided through other channels.
Okay. And Iris, what about SDP? Will it fund a camp and an aide? Yeah. I mean, Self-Determination can definitely support both the camp and the aide for 1:1 as long as this is outlined in their IPP, their person centered plan as well, and they have it in their spending plan already, or if not, if they have advocated for it and they're going to get it into the budget. At times, the Regional Center may request details about what is the need for the 1:1 like Lisa said, right? Would the camp be able to provide this aide or not, and if they don't, why? So they might have a specific form that they would like for this specific camp vendor to fill out and send back to the Regional Center for approval, as well as, obviously, when we're requesting this 1:1, they will want to know the details of the camp.
What is the camp? How many weeks? What are the hours? What's the schedule? So that they know how many hours of this 1:1 aide is needed, but again, it's really dependent on the particular Regional Center, so I would reach out to the Regional Center just to make sure that we understand what the policy is and if there's any specific forms that they need so that we are working on those forms right away. Okay. Great. And I know, Lisa, you mentioned social rec earlier, so can you explain the social rec options for Regional Center and how they differ from camps funding? Yeah, so these are separate categories, but they're generally lumped in together along with non-medical therapies and education related services. As a category that was not funded for many years and was recently restored. Generally, the social rec includes things like lessons for recreational purposes out in the community, like swimming or crafting or horseback riding, and these often happen all year.
And the Regional Centers, often for social rec will put... Some of them will put an hourly cap per week on them. Whereas camp includes day programs and overnight camps that generally happen when school is not in session. They provide enrichment and recreation and socialization, but they're generally like a day program or an overnight program and they serve an additional purpose when school is not in session. And if you're not sure kind of what programs are available in your area, you might want to take a look at our summer camp guide. And then, again, also ask your Regional Center for a list of vendored providers to see what the options are. And with camps, Regional Centers will often put a cap on it that's, for example, a certain number of days per year of camp or a certain number of sessions per year, per quarter, or per year.
And is that also... I was just going to ask, because I know you had talked about caps and limitations. That’s another question we got a lot from families is that, okay, my Regional Center is telling me that we've reached our cap, but we still have all of this time left in summer, so is there anything else you want to say about those caps and what...? Yeah, I would... I mean, I would check those caps in advance to see whether they're treating... because you can have a camp that's a week and a camp that's a month and some Regional Centers might treat that as five days versus 20 days and some Regional Centers might just treat it as those are two... those are each one camp. So it helps to have a sense of what your Regional Center’s policy is going into it so you can kind of decide strategically how to structure the summer.
Got it. And Iris, I think of SDP as being kind of vastly different just because we're not restricted to only choosing from vendors, which obviously gives us more options, but are there the same sort of categories that we see in traditional funding such as camps and social rec that determine what we can do, and are there the same kind of limits on social rec or camps that we see in traditional funding? Right. So in Self-Determination, it always goes back to budget versus spending plan, right? In your budget, and the way that things are funded typically in Self-Determination, there are still the same general categories that Regional Centers would fund for.
Some Regional Centers, camp and social rec, it's kind of part of the same social rec policy. With others, they have social rec and then camp separately. I mean, it really depends on the Regional Center, but the way that it’s funded traditionally, traditionally that's the way that it's going to be funded in to the budget for Self-Determination. Now, same thing goes back to the spending plan. The spending plan continues to have that flexibility, right, where families might have been funded for just one week of camp, but now they want to use other services that they were funded under their budget to have more weeks of that camp or more x, y, z activity, so it's more within budget versus a spending plan, but definitely they will have a lot more flexibility than they would have traditionally with their social rec, with their social rec separately and camps then there is all together.
Got it. And what about transportation to either camps or social rec programs? Is that covered under a traditional Regional Center funding? So typically transportation to non-medical appointments... I mean, for medical, it can potentially be covered by Medi-Cal, but for social rec and camp, typically it's considered parent responsibility for children, whether that looks like driving your child or like using public transit or paying for transportation. Most Regional Centers have this spelled out pretty clearly in their purchase of service standards. I could foresee an extraordinary case where you could potentially ask for transportation as an exception, but this would be pretty limited. For example, if you are in a situation where the parent can't drive, family can't use public transit, Access Paratransit is not an option, the family can't afford to pay for private transportation, and attending the program is the only way that the child will be able to achieve that IPP goal, I could see in a situation like that, potentially asking for transportation as an exception on a limited basis.
I... Definitely if you’re family who can't access public transit and are not able to drive, I would encourage you to look into Access Paratransit because that may be an option if you're... for mobility purposes. Okay. And what about SDP,. Iris? How is transportation handled? So with transportation, same thing. It really goes back to, depending on the age and their Regional Center policy... I mean, for minors, it's always going to go back to it is a parent's responsibility, so it will not be funded and added into the budget, any kind of transportation, but what some Regional Centers will allow, and then, again, it's based on each Regional Center’s policy, they would allow for their budget other services or from other areas to be able to add transportation as a line item into their spending plan for minors, whereas other Regional Centers will not allow it even in this spending plan.
So they need to really check back with the Regional Center. Now for those, transportation is often included into the Self-Determination budget as part of the SS needs that are tied back to the IPP, PCP goals, and then families can decide how to incorporate it within the spending plan. There... Lisa, she said, there might be extraordinary exceptions for minors. Definitely something that needs to be discussed with the Regional Center and check on the specific circumstances and the Regional Center guidelines. Got it. All right, so let's talk about child care. Obviously, one of the biggest questions as well, right, that comes back to the, what the heck are we going to do with the kids this summer, but Lisa, can you explain the options in traditional funding like respite and specialized supervision, which you've mentioned a couple times?
Yeah. So these are... They can often be confused because they're often funded through the same channels and have the same hourly pay rate, and sometimes you have the same provider doing both services, but respite is in-home care to allow the parents to have a break from caregiving, whereas specialized supervision is daycare for parents who work full time when their child is unable to participate in generic daycare resources. Typically, respite does have to happen in the home, and most payroll agencies don't allow the provider to transport the child. Got it. And you mentioned at home. Just asking to triple check, so respite... Are you saying that can't be going to the park, the pool, vacation, or anything outside the house? Typically the rule is that respite is supposed to be happening inside the home to give parents a break from caregiving. That's typically the requirement.
Some people will pay for additional hours out of pocket to have some additional time that's not constrained by that, but the rule generally is that respite is supposed to be happening at home, and you're not supposed to transport the child. I think if they take the child outside for a walk, I don't think that's an issue, but they're not driving them around to their afternoon appointments. Got it. And can you get an increase under traditional... Can you get an increase in any kind of staffing support hours during the summer, whether that be respite, specialized supervision...? Yeah, so respite, it's basically if you can demonstrate a need for additional respite hours. Specialized supervision will often get increased for working parents. They often call it ESY hours, and if you remember during Covid, a lot of kids got Covid hours, which were essentially ESY hours.
These are hours that they provide when school is not in session for children who are receiving specialized supervision, often four hours a day, and it would only be increased during the gaps when summer school is not in session. So you're not going to get ESY hours during the time that ESY is actually in session. And can you get those ESY hours if you are not working full time? Generally not. Generally not because it is a substitute for daycare, and the Regional Centers generally only can provide daycare if the parents are working full time or enrolled in school full time, or if one of the parents is... If one of the parents is disabled and unable to provide care, then you may be able to argue for daycare and specialized supervision. And if it is a two parent household, if one spouse works full time and the other does not, does that change eligibility for the specialized supervision?
Yeah, typically they would say, “Well, then you don't need daycare, because you have a natural support in the home.” Got it. Okay. So Iris, the approach to child care in Self-Determination is a bit different, so can you explain how that works? Yeah, I mean, again, when it comes to the budget, the budget is built on what the individual would traditionally receive in the traditional system, right? So requesting and justifying the services are very similar in the same way that the traditional system would work. The main difference, I feel, is once the hours are approved and they are in the spending plan, families have a lot more flexibility in how they coordinate these hours, how they use those childcare services, when they want to use some more at this time, maybe in the spring, because they’re actually gonna have more help in the summer than they thought or whatnot, and they want to pay a different rate or... that's that flexibility, but the way that the budget is built, it goes back to the same justification for the service, the same justification of why it's needed will need to be in place. One of the things that I would just want to emphasize is, a lot of the families here that x, y, z person in this Regional Center is getting childcare hours or specialized supervision hours or personal assistant hours, they... It's different names, right, sometimes for Regional Centers, and they feel like, oh, it’s the same thing over here at my Regional Center.
That might not be the case. There are some Regional Centers that consider that to be a parent responsibility up until a specific age. One of them is until they're 14, so that's something to check back with that Regional Center, and also with some of them, they actually have what they call a shared cost, I believe, in which part of it, it's technically paid. It goes back to your responsibility. So they will not pay the full price of childcare. Parents will be still responsible for some of it. So, again, it's just... it's an individual basis, so they need to check back with the Regional Center. Okay. That’s true in a traditional model as well. Sorry, Lisa? That's true in the traditional model as well. And what about traveling, Iris, under Self-Determination? We heard what Lisa said about traditional.
Can you pay somebody to help support your child while on vacation under Self-Determination? I have to say that it's a difficult question to even answer. We also check with senior IFs to just really not give the wrong answer because this is something that obviously has definitely come up several times with my clients, with other people, because obviously when we're on vacation it’s not like the needs of our children and to be supported just, poof, they're gone. Bye. They're not. At the same time, I would check back with your Regional Center. Check and see if this is a possibility. I’ve seen it be a possibility in the past. Again, as long as there are lines and ir follows the program guidelines, whether it’s in California or out of state, that's even a bigger question to answer. Again, I would check back with the Regional Center.
One of the things that I know for a fact is that in Self-Determination, the Regional Center will not typically fund for things like food or lodging for anybody in SDP, but again, I've seen it with some exceptions with some camps, so something to check back with them. Another thing is when it comes to labor law, right, in California, we cannot violate labor law as well, so something also to check with their Financial Management Service, because nobody can work no 24 hour shifts, so how is that handled? I would say, make sure that you talk to your Regional Center. You talk to your Financial Management Service and get the correct answers. Okay. And just another quick follow up, Iris, if we hear of something last minute that we think could be great for our kids, but it isn't in our SDP spending plan, what can we do? Tie it to an IPP goal, as you show and talk to your Regional Center.
In this case, if you have an independent facilitator, right away. Unfortunately, the process does not change, right? We still need to do... If it's not in your spending plan, we still need to add it into the spending plan. Now you're going to request it in the budget, then that's even more, right? It will take longer. So again, it's just this conversation that you need to make sure to go back to your Regional Center, to the independent facilitator, and just get it into where it says the budget and then the spending plan, or just in the spending plan. Do it as soon as possible, because again, depending on the Regional Center, it might take longer than not. Right. And something that both of you keep coming back to, right, with all of your answers, is the foundation of what services we're getting, right?
So whether we're on traditional or SDP, all of our services begin with the IPP, so how can we talk with service coordinators about what our kids do need in a way that maximizes the services that they provide? Lisa, you want to start? So this is assuming that you already have an IPP with all the the goals and concerns set out, the best thing that you can do as you approach your service coordinator is to make sure you've already done your homework, like I said before. So when you're making the requests to the service coordinator, you want to articulate what it is that your child needs and how the service is supported by the goals, show them that you've considered the available generic resources already and have attempted to use them and to access them, and then if it's applicable, provide documentation to the service coordinator showing that you tried to use generic resources and that they were either not available or not sufficient, and so that you... because those are the things that they're going to come back with.
If you ask for a service, they're going to say, “How is this supported by a goal? Have you looked at these community resources? Have you asked the camp if they can provide these things? Have you asked your insurance?” So to the extent that you can show that you've already done that, you'll have a greater chance of success. Great. And Iris, is there anything that you wanted to add to IPP preparation in regards to SDP? Yeah, I think Lisa pretty much addressed it for sure, and she did mention something that I had not mentioned, but she has mentioned before, but generic resources, right? We do need to always look back to generic resources. Make sure that you have exhausted that. Also, when it comes to all of the services that we're requesting is making sure that they are HCBS compliant, home community based services, that they are... Basically what that means, it’s offered to everyone out there, not just individuals with disabilities.
So again, there's different things that we need to take into account before requesting this, and making sure that they are part of our IPP, PCP goals. And you both mentioned generic resources, so I just want to be clear for maybe people that don't really understand what that means, and you gave a couple examples, Lisa, but I don't know. What is the biggest example of a generic resource that you all see that is maybe one of the first things that parents don't think of to check that Regional Center is going to say, “Did you check this?” Is there... Are there any examples you want to share with families just that might not understand? Well, it's insurance and school districts are probably the most common ones, but another one is community programs that are available to everybody, like with... I'm trying to think of an example. If there are... For example, if you're asking for child care, is there an afterschool program?
Is there... Are there daycare programs that are open to everybody that you could access, regardless of whether or not a child has a disability? And what we find is sometimes, yes. Sometimes the answer is yes, sometimes the answer is yes with some additional supports provided by the Regional Center, and sometimes the answer is no. We need something completely different. Correct. And I was going to point that one out, Lisa, because some schools give that after school care or they provide that after school care, but a lot of the times what we find is that there's after school care, but there's no 1:1, right? So then the Regional Center at this point would basically kick in and provide that 1:1 in that afterschool program, right? The other example that I was going to give, which actually I have ran into a couple of times, is for instance, people that would like to access music therapy. Some insurances actually fund music therapy.
I’ve been surprised with that. Not a lot, but some insurances will fund for music therapy, so sometimes families end up just with the co-payment, which again depending on their income, that is based on income, a Regional Center might be able to pay for the co-payment or they might not, but there are a few examples when it comes to social rec specifically that... or child care or that kind of services that they always have to go back to the general resources. And with the state budget sort of going, there's going to be a lot of challenges coming up from a federal level and on the state level that we're starting to see that are going to become more and more in the coming years and so, I just keep hearing that Regional Center, they're really going to start, not that they don't already, but really cracking down on are you using generic resources.
Is insurance paying for absolutely everything? So it's just... Obviously it's what we should be doing now, but let's get into the practice, right, and thinking ahead, just like Lisa and Iris are saying, so then you're not surprised when you're asked that question and things are just delayed. My suggestion would be that if the Regional Center is putting pressure on you to use generic resources, part of their job is to help you find and access generic resources, so if they're telling you use generic resources, ask for their help, ask for their help in accessing those. Because for sure it's not easy. I'm going to say especially insurance is one of those that it's been so difficult for some of my families, and it's just going into a rabbit hole, right, and being passed around and it's... just it's a lot. I'm sure every family listening to this can relate. Yeah, the fun cycle of insurance.
Lisa, what... For any families that are listening though, or who are experiencing this that are worried that traditional funding can limit what their kids can do, what do you want to say to them? Well, two things. One is that, again, some Regional Centers do have a policy of allowing you, the parent, to choose a vendor for social rec or camp and then doing reimbursement as long as the service is authorized ahead of time, so that may be an option for you. If you're finding... Every once in a while, there's going to be something that you want that the Regional Center isn't gonna provide. It's just... It's going to happen, but if you're finding over and over again that the traditional model just isn't serving your child anymore, that might be when it's time to look into Self-Determination. That might be when it's time to look into SDP.
Well, and on the other end for you, Iris, there's so much... like we've been talking about, there's a lot of choice and flexibility within the Self-Determination Program, but it can be a lot of work, so Iris, what do you want to say to the families who are thinking, this sounds great, but it also sounds intimidating? What do you want to say to them? Yeah, what I try to remind families is that you don't have to figure it all out at once, and you're also not doing this alone, or hopefully you're not, because you should have the help of, first, your Regional Center, your service coordinator, potentially an independent facilitator that you have identified, and also your Financial Management Service. They all can help you understand how to better advocate for services, how to better tap into general resources, how to better incorporate it into IPP goals, how to better look into your budget, how to do your spending plan, how to plan all these services in a way that works for your child.
Also, it's okay to start simple, right? Some families start Self-Determination and they mimic somewhat what they would be doing in the traditional system, and then once they get a little bit more confident or they find more... then there's resources that work for their child's needs, then they start doing more and changing it up and whatnot. It's just really about creating a system that grows with the child's needs and the family goals, right? And then again, I tell everybody, Self-Determination, it's a bumpy ride, and it is not for the weak, right? It’ss not a stream line like this, and once you feel you've got it, then the Department of Developmental Services, the DDS, just comes with a new policy or something, and now it's like, “Oh, now we need to do these things differently,” so just as much flexibility as Self-Determination, allows within program guidelines, within certain boundaries, at the same time, I feel we need to be flexible because as the program is growing, things are changing.
I still believe 100%. that it’s absolutely amazing, that it has changed a lot of people's lives, including my daughter's, but it just... it takes time and not... We can’t have all the answers in the first year, the first few months. It just takes time and we need to be able to be flexible as well. Right. And like you said, Iris, we also need that support. You need a strong... If you are using an independent facilitator, and... or... and maybe they're not helping you in the way they need or they're not responding to you or they're not getting you the answers, just like everything else in your life, look for somebody who's a better match for your family, right, because you should have that support. So maybe you don't... Maybe you want to handle most everything, you want them to help with the spending plan, or maybe you want an independent facilitator that's going to help you find the camps, the resources, the things that are right for your child, so ask those questions.
And we do have resources on questions to ask independent facilitators if you don't even know where to start. I did want to ask, Iris, a question came in, and maybe this is for both of you, but it said, “What is something that families have been told no to for summer that actually should have been a yes, and how would that answer change under Self-Determination?” Can you guys think of maybe a good example of something that... I see them saying no to an aide all the time. Traditional? Really, I mean... --Or not the right kind of aide. They'll say, “Oh, well, we can provide a health and safety aide, but not a behaviorist.” I hear that a lot. I do hear that a lot from families. Iris, sorry, what were you going to say? Yeah. No, I was going to say, I don't know, this could go back to maybe ABA, if there's ABA in place or they might push them in to... Well, what about tapping into your generic resource?
ABA. I'm trying to think of a specific example where they have said no and it's a yes, but I have to say those ESY hours in the past, I've seen them not... When both parents work and it is documented, I've seen people that I've started working with and they have expressed the need for support to their coordinators and the coordinators... It's not that they said no, they just said nothing. So the families didn't know what they had access to and they could have all along had this help, and they didn’t because the coordinator never communicated that. In Self-Determination, it wouldn't change. I mean, it would change in the sense of maybe being able to pay this individual more or whatnot or using it more for twice the time, but it's... At times, it might not be a no, it might be more nobody told you that this was available and you didn't know because people just don't know what they don't know. Right. Right.
And this question came in as well that I thought was pretty interesting, but if you had to choose, is it more valuable to have guaranteed services, which I guess that that's probably what they're thinking for traditional maybe, maybe guaranteed services or flexible funding, and how should families think about that decision for summer and beyond? So I guess it's just this is really like a... Every family is different, but how do you guys weigh that? Lisa? Yeah. I mean as a family that is not in SDP yet, my feeling on the matter is, number one, it depends on every single family, but two, it depends on the kinds of services that you're asking for and the reason that you need them. I think for some families, the range of services that the Regional Center provides are sufficient, and that is what they need. For other families, for other kids, the sort of... you have to think outside the box in order to address their needs, because the usual set of services isn't what they need, but they still need a lot of support, so I don't there's any one way, one situation where you could make a blanket statement, but in addition, I don't think anything is ever guaranteed versus flexible.
There's... SDP has more flexibility, but there's still a lot of rules and regulations, and traditional, nothing's guaranteed, but on the flip side, there's a lot of things where you can ask for an exception on a limited basis, so there’s sort of... there's restrictions and flexibility on both sides of the coin, and it's really about what your child needs specifically. And Iris, before you answer, I just also want to remind families that if you would start Self-Determination and you feel like it is not for your family, you're not stuck there, right? You can always go back. So there's also that reminder that it feels like a big move, but you're not stuck. You're not stuck in that. Okay, sorry, Iris, go ahead. Yeah, nothing is stagnating and you could always go back to traditional, but then you have to wait a year to go back to SDP.
You cannot just, “Oh, I go one month and come back.” You can't do that. But again, what I would say is exactly what I was going to go with. Lisa. There is nothing that is guaranteed in traditional. There is nothing that is infinite just free for all flexibility in Self-Determination, right? And the thing here is if you're in Self-Determination and you want to start with all the exact same services that you got into the budget and put them into SDP, you could do that, and then after make it flexible and maybe you set it some other ways that still align with your IPP goals and they still align with the program guidelines, then you have that possibility, whereas in traditional, this is it. That's it. There's no... So over here I feel like you could have one or the other, just keep it exactly the same or some services, tweak here and there or over here it's just that’s it, right?
So you could change a different... I guess... from swimming to basketball, whatever, if you needed to do that, but again, how many providers can you have? I don't know. So just to keep that in mind. I don't think it's a guarantee of one or the other. --It’s not, which is really important, so thank you, because we know every family is different, but thank you for for laying out, right, just what families could be thinking about. And looking at the time, I did want to... I think we have time for just one more question, but if we are denied any of our summer requests, what can we do? Lisa, why don’t you start? So submit an appeal. This is another reason why it's really important to start early, is that it gives you time to sort of iron out any wrinkles along the way, provide any additional supporting documentation if they ask for it, or submit an appeal if they deny your request.
And Iris, how about SDP? Same thing. You need a notice of action. Once you have a notice of action, you could appeal, but in the notice of action you will know why are they denying it, and based on that, you can make a case for it. Got it. You'd be surprised sometimes what you can find in those notice of actions and be like, “This is not it. This is not what I said,” or, “This is not...,” so, yeah, just get the notice of action and see why it was denied in writing, not what they just said. And just a reminder, just... We have plenty of materials on this, but filing an appeal does not automatically mean that you're going to go to hearing. A lot of these disputes can get resolved at the informal meeting or mediation, so it does not necessarily mean that you're going to be stuck going all the way into the process of a hearing.
Absolutely. So... and not specific to Regional Center, but in all of the systems that we are in, that our kids are in, a lot of times it feels like sometimes there's pushback and they're waiting to see who's going to push back, or if people are going to push back, and we know it's not always within your bandwidth, but like Lisa said, maybe it's not as scary as it seems. It could be, start with a meeting, informal, at Regional Center. There could be a miscommunication or maybe they need some more documentation to put that request through. So we know that sometimes there's only so many fights you can do within a day or a week or a month, but it can absolutely be worth it, so thank you. Thank you so much to Lisa and Iris for laying out so many different ways that these programs can support our kids.
We want your kids to have a fantastic summer. It just takes some careful preparation to get them this, so thanks again to Lisa and Iris for talking with us today, and to all of you for being here. Our mission is to support you so your children can thrive, and we want you to thrive too. We'll see you soon.
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