Getting Ready for Summer 2023 with Regional Center

On May 4, we asked our Public Benefits Specialist, Lisa Concoff Kronbeck, to give her tips for requesting services from Regional Center over the summer, like extra respite hours, 1:1 aides for summer camp, social-rec services, and more. You can watch the full replay of the event above or here on Facebook.

To learn more, check out our article How to Get the Most Out of Regional Center This Summer.

Lindsay Crain
Hello and welcome to Undivided Live. I'm Lindsay Crain and I head the content and community teams at Undivided. We know that the end of the school year can feel like a year's worth of things crammed into two months, but we are almost there. Yes, it's almost summertime. So does the thought of summer make you excited? Nervous? Or tired just thinking about it? Let us know in the chat or throw an emoji in that can speak for you. I think I'm always a little bit of all three. Lisa, what about you? That's Lisa’s emoji, that’s all we needed to see.

I'm sure many of you have already booked your camps, you have your days and weeks meticulously planned. And I'm guessing there might be also some fellow procrastinators out there, right? But either way, today is for you. Because there are several unfortunate realities that many of us face come summertime. So we're going to talk about possible supports that can hopefully make it a bit better. So number one, camp searches can be difficult, right? It's hard to find the right fit, especially if your child needs extra support. And unfortunately, not all of our kids can thrive in the local parks and rec program, but we want and they deserve to have a social summer just like any other kid, obviously. And as an aside, I will add, if camps receive disability training with an eye on an inclusive culture, we could raise that bar exponentially. But regardless, we need to find the right program for our child. And that can look a lot of different ways.

So number two, whether you're working or not, your kids suddenly have lots of time, and those childcare needs increase greatly. And as we all know, good caregivers are not easy to find. And the neighborhood sitter, who might be a lovely eighth grader, also might not be the most appropriate person to watch our kiddos. And let's face it, you are hands on all the time, and you deserve a break too.

And number three, all of this costs money. So let's talk about how Regional Center can help support your child's summer so they can socialize, thrive, and hopefully have some fun without breaking the bank completely. And the same goes for you. So respite camps, social-rec aides and more, today we're getting you ready for summer with Regional Center. And the woman who's going to show us the way is Undivided’s Public Benefits Specialist, Lisa Concoff Kronbeck. Hello, Lisa. Welcome back.

Lisa Concoff Kronbeck
Hi, thank you.

Lindsay
And Lisa counsels families about government programs that support our kids like Medi-Cal, CCS, IHSS, and our focus for today, Regional Center. She's also the mom to a kiddo with Down Syndrome and identifies as an individual with disabilities. Lisa, always good to have you.

Lisa
Always good to be here.

Lindsay
She breaks down the things that make some of us break down. I guess. I never thought of that. Right? You're helping us break down the things that you know, today, hopefully you will not feel like you need to have a breakdown after hearing Lisa. So also our community manager Donna and one of our Undivided Navigators, Iris, they're in the chat with you. They're sending your questions to me and Lisa, so please throw those in the chat, we're gonna get to as many as we can. And if you still have questions after today, or you want one-to-one support, our Navigators can help you work through those Regional Center concerns and more. We've created a system informed by the collective knowledge of thousands of parents who've walked this journey before you and alongside you, combined with continuous conversation and consultation with specialists across the disability field, specialists like Lisa. So step by step guides, thousands of resources, and the Undivided digital super binder all help our Navigators support our parent members in determining the right path for their family. And it's all stored and organized in the Undivided desktop and mobile app. So we want to help you simplify a life that's anything but simple. So Donna shared the link where you can learn more about our free kickstart if you want that personalized support, check it out, and you can start working with a Navigator within days.

We'd also love your help. We have a super quick survey that dives into the effects of caregiving in our families. When we're working with providers, researchers, legislators, changemakers, or employers, we want to bring our collective reality to life. And we can do that with stories and anecdotes, but we also like data. So Donna is going to show the survey link in the chat. Feel free to share with your parent networks so we can let the world know how they can best support families like ours. Many don't realize how caregiving can affect different parts of our lives, and we want them to know so we definitely will be sharing those results out. So thank you in advance.

And lastly, if you're looking for answers, check out our Parent Resources. You'll find all of the latest articles and videos. We're gonna be sharing a bunch throughout our chat today and beyond. So Donna will share that links so you have it when you need it. And with that, let's talk summer.

First, today we are going to be discussing, Lisa and I are going to be discussing how to navigate the traditional funding model from Regional Center. And as many of you know, Regional Center clients can also enroll in the Self Determination Program which allows, you know, a lot more flexibility in planning. So while Lisa and I are going to be discussing how to plan directly with your service coordinator, our navigator Iris is in the chat. In addition to being a navigator, Iris is an independent facilitator. So if you have questions about Self Determination, Iris will be in the chat to answer those. Feel free to throw those in. Okay, Lisa, let's dive in. What is the first thing that we need to do before requesting summer services from Regional Center?

Lisa CK
So I would say the first thing that you need to do is review your child's IPP and make sure that it has goals that support requesting summer services, and if it doesn't, call an IPP meeting to update the goals. So there are three things that you want to really think about when you're reviewing the IPP and thinking about summer. So number one, what services and supports is your child going to need over the summer? Number two, what services and supports do you need over the summer in order to meet your child's needs? And the third one is what additional supports do you already have over the summer, generic resources like ESY extended school year, community programs, programs your insurance might cover, family, etc. Because those those are things that the Regional Center is also going to take into consideration when evaluating a funding request.

Lindsay
Right. So just do a little pre-work, get all those things, you know, sort of plan, write them down if you need to, get it in your head before you call your service coordinator. Get the thoughts organized, because, you know, it's always good to come with wit your facts, what you need, come organized. And then you can put your ask in, obviously. Alright, Lisa, so let's start with two Regional Center resources that can help with some childcare. We have respite and we have specialized supervision. What is the difference between the two?

Lisa CK
So they're often funded through the same agency if your Regional Center works with an employer of record. They generally have the same rates, but they serve two different purposes. So specialized supervision is daycare for parents who work full time and they can't utilize generic daycare resources due to their children's needs. So eligibility is going to be contingent on whether the parents are working full time and to what extent they are not able to access community daycare resources, like after school programs or just general basically after school programs and other programs like that, daycare programs. Some Regional Centers are also going to take into consideration what your expected childcare expenses would be if the child didn't have a disability, and so some Regional Centers will fund specialized supervision entirely, and some of them will only find the the amount in excess of what you would be expected to pay if you had a typically developing child. Some Regional Centers will also provide more services and more hours once a child turns 13 because at that point, parents wouldn't usually anticipate having daycare expenses because many 13 year olds are able to stay by themselves after school.

Now respite, on the flip side, respite is to allow parents a break from the extraordinary childcare duties that they have so that they have time to run errands, self care, time together, spending time with other children in the household. So the eligibility assessment for those services, a lot of Regional Centers have basically a checklist, and they'll add up your score and determine how many hours your child will get. They usually focus on the intensity of care that your child needs, lack of other natural supports and resources, any extenuating circumstances like if a parent or other household member is dealing with health issues, and you can always ask for an exception if your respite needs exceed what comes out on the form. But typically, what exceptions aside, they'll go by their assessment tool, and you can always ask for a copy of that.

Lindsay
Right. Okay, so don't worry if you're hearing these, we're going to ask a bunch of specific questions about each of these. Because there's a lot of scenarios and I just want to clarify, Lisa. So let's dig into respite first. So if you aren't working, or if you work part time, can you get an increase in respite hours if your child isn't in ESY?

Lisa CK
Are you asking about specialized supervision or are you asking about respite?

Lindsay
Respite. I want to start with respite. Yes. Yeah, let's dig into respite first. If you aren't working or if you work part time, can you get an increase in respite hours if your child isn't in ESY?

Lisa CK
You can request it, you likely, if ESY is in your child's IEP and you're not utilizing it, you will likely need to demonstrate why you're not using it because the Regional Center is generally the payor of last resort. And if the school is offering a service, it's considered a generic resource. So if you have a reason why you're not utilizing ESY, that may be compelling enough to access additional respite. But often, I mean, usually, when you think of ESY, you think of specialized supervision as a substitute because this is usually for parents who are working full time and they expect their children to be in school, and when the children are not in school, then you need someone to watch the children while you're working. And so, again, it depends on the reason for the request and depends on the reason why your children are not in ESY.

Lindsay
Okay, so what about what if they are in ESY but it's a shorter, so what about can we still get an increase in respite if they are in ESY, but it's a shorter day than a normal school day?

Lisa CK
I mean, again, you have to make the case of why it's necessary. As far as respite goes, they may well say that you get a natural respite when your child is in ESY.

Lindsay
But it's not a minute to minute comparison.

Lisa CK
It’s not a minute to minute comparison, which is why I'm saying it's usually more connected with specialized supervision, because your child is in school and you work, and then your child is not in school, or they have a shorter school day, but you still work. So usually, it's kind of more tied to specialized supervision. And I mean, you can make the request. And sometimes, you know, again, it always depends on the circumstance.

Lindsay
Right, right. So what about if you are an IHSS provider for your child? Does that affect an increase in respite hours for summer?

Lisa CK
So IHSS is a tricky question because, in theory, the Regional Center looks at all available generic resources, including IHSS. And some Regional Centers, especially if a child has protective supervision, will say, Well, you could hire somebody else to do these hours and get respite that way. And that's easy enough to say on the Regional Center side, but IHSS has very specific rules about when you can hire an outside provider and when you can't. If you are qualified as a parent provider, there's generally only very limited circumstances when you can have an outside provider, and that's usually if you're working part time, then you can hire a third-party provider while you're at work. But if you're working full time, you can really only hire a provider outside during the time that you're at work, or up to eight hours a week, when you're attending to other household needs. And that may or may not be enough. And that may or may not be enough respite to meet your needs. And, again, there's very restrictive rules about what you need to be doing during that time when you've got a different provider. So it is a generic resource, but at the same time, it might not be enough to fulfill your needs, and it may not be an appropriate thing to say, “Go hire another provider.” It may not just just may not be that easy.

Lindsay
Right. And okay, so what about if you do work if you work full time, how does that affect respite and specialized supervision?

Lisa CK
Yeah, I was going to add that if you are a full time IHSS provider for your child and you have, for example, max hours. One thing I did see happening during the pandemic, and I don't know if this has extended beyond the pandemic, is that sometimes during the periods when your child was home from school, they might be willing to view your IHSS max hours as full time employment for the purpose of allowing specialized supervision for the additional time that your child needed someone during the school day. Now, again, that was during the pandemic, and it was an exception that they made. I do not know if that has continued. But you could potentially make the argument over the summer that it's the same situation.

Lindsay
Okay, so just to repeat what you said to make sure that I'm hearing it correctly. If you are a full time IHSS, like protective supervision, you have those full time hours for your child, you could try to make the case that those are your full time hours and that you could qualify for specialized supervision with Regional Center.

Lisa CK
You could try. Like I'm saying, that was an exception that the some Regional Centers made during the time when all the schools were shut down. I have not seen it happen over the summer, but that doesn't mean it couldn't.

Lindsay
Yeah, we would love to hear you know, if you know, if you go out and you ask your Regional Center, let us know, right? Donna will be sharing, she could share it now and I will definitely be sharing later, our Facebook group, right. I would love to hear from parents if you know what Regional Center you're with and what their response is, if you hear that we'd love to hear you know if that if people are having luck with that, post COVID. So, okay, so Lisa, what about if you work full time? How does that affect respite?

Lisa CK
If you work full time, what we saw a lot during the pandemic, and what we continue to see over the summer, often is that what they'll give is four hours a day, during the time that the child is not in ESY. And that's, I mean, to accommodate for because ESY is often a shortened school day. And so they're kind of substituting for what the school district would be providing. Because ESY is not the entire summer either. That's what we see a lot is four hours a day.

Lindsay
And that's for the specialized supervision.

Lisa CK
Right.

Lindsay
So then to clarify, can you get respite and specialized supervision if you're working full time, since they have two different intents? Can you get both?

Lisa CK
I mean, again, it always depends on the circumstances. And you may have to explain why your job is not a natural respite from caregiving. But, I mean, that seems pretty straightforward. But yeah, they do have separate purposes. So you just need to demonstrate why you need both services.

Lindsay
Okay. And what if one spouse works full time and the other does not? Does that change eligibility for specialized supervision?

Lisa CK
Yeah, that can because supervision is a childcare service. And if the other parent is available, then they can be the ones to provide childcare. And that's that they're going to call that parent responsibility if the other parent isn't working.

Lindsay
Great. So just to clarify, you can qualify for specialized supervision if you're a single parent working full time, or if there are, you know, two parents, and they're both working full time, that would be the qualification for specialized supervision.

Lisa CK
Generally, yes. And again, there are always exceptions, but these are the general policies.

Lindsay
Okay. And with respite or specialized supervision, you know, we did have some questions ahead of time of like, How can parents get started, right? Do we just need to request the support from our service coordinator? Get it rolling?

Lisa CK
I mean, yeah, I mean, you can make a request in writing or requesting an IPP. Some Regional Centers are a little bit more formal, and they want all requests to be made in the context of an IPP, other Regional Centers, you can email your service coordinator and make this request in writing. And then they'll bring it to the funding committee, if that's how they operate, but it's just kind of depends on your Regional Center and how they how they approach that process. But if you're already calling an IPP to address the goals, this would also be an opportunity to request additional services.

Lindsay
Right. And if your IPP isn't coming up, and you still want to make that request, you know, if something has changed, like Lisa said, contact your service coordinator, you know, and see what they have to say and how you need to submit that request. So just another point of clarification, Lisa, so is specialized supervision only available in the summer?

Lisa CK
No, it's not only available during the summer. It’s just you see it more often during the summer because that's when kids are out of school.

Lindsay
Right. And I see Anna had a question. They're both from the Regional Center. And so I think, Anna, you're probably asking both specialized supervision and respite, these are both services that are provided from the Regional Center. So I don't know if you want to say anything else to that. If that's what you're asking.

Lisa CK
Yes, these are both Regional Center services..

Lindsay
Okay, so now I want to talk about social rec funding, right. This was recently restored. We talked a lot about it. Coming back, there was a lot of excitement, it hadn't been around for a long time. So it was recently restored after being on hold, you know, many years. So can you explain, Lisa, for those who don't know, what is social rec funding?

Lisa CK
Yeah, so social rec funding is, well, let me explain social social recreational opportunities are opportunities for Regional Center consumers to socialize, build relationships with peers, and participate in their home community.

Lindsay
Okay, and that's separate from funding for camps.

Lisa CK
Yes. So there were several different categories of funding that were restored. You have social rec, you have camp, you have non medical therapies, and educational services for school aged children. So these were all separate services that were restored a couple of years ago.

Lindsay
So for people who might be new to this, Lisa, can you just give me a quick example of the difference between an example of a social rec program and, you know, versus a camp because I think a lot of people think of camps and social rec. So what would that look like?

Lisa CK
A social rec program could include, like, a social activities group. It could include gymnastics or dance class. It could be any opportunity in the community where a child would have an opportunity to be with peers and participate in recreational activities. Those are often billed as like either an hourly, or like per-session or like a per, you know, per 10-week session or whatever. But it's, you know, once a week, twice a week, those kinds of services as distinguished from camp.

Lindsay
I was gonna say, hold on camps for a minute, Lisa. Okay. Just because, yeah, because I want to talk about camps in detail obviously, and medical and non medical therapies, in just a minute. But, you know, with social rec, we know, it's taken a while for social rec services to get going, you know, both to build up a good number of vendors and for Regional Centers to start activating the funding. So we talked a lot about this in the beginning, right. And you know, it was slow going, right, because it had been many years. So what are you hearing on both fronts? Are we finally running solid with social rec throughout the state?

Lisa CK
So I'm hearing that there are a few holdouts, but it's sounding like most of the Regional Centers have published and submitted to DDS their service standards. Every Regional Center has something called purchase of service standards for every service or support that they provide. And so one of the requirements when the funding was restored was that each Regional Center needed to redraft their purchase of service standards for those services, submit them to DDS, and then publish them on their websites, and most of them have. Some of them still do not have their service standards available for parents. But mostly I'm seeing that they do.

Lindsay
Okay. So, also, for anyone listening, if you've had success with social rec, or you're still having issues finding appropriate choices, right, or getting funding, like, let us know in the chat, again, we'd love to hear about that in our Facebook group as well, you know, but just so we can kind of, you know, know what's going on throughout the state. Because Lisa's always checking in with different Regional Centers, but it's different, obviously, talking to parents, so we'd love to hear from you. And we're gonna get a couple of questions here, Lisa. Tasha asked, What about when you have respite hours, but require an LVN and there are none available?

Lisa CK
Isn't that the $64,000 question? Yes.

Lindsay
Lisa understands this, you know, it is something she follows very closely.

Lisa CK
On a deep personal level, I understand. Yes. And I don't know that I have an answer. Because it's a global shortage. You may have the hours approved. But getting, you know, finding someone is another story. And honestly, I really don't know the answer to that. Because they all seem to be at the hospitals, honestly, like, the Regional Center and Medi-Cal are often going to the same agencies to look for LVNs. And, I mean, they just don't seem to be there. If you have had some success with this, I would love to hear about it. Because what we're seeing so far is that the hospitals pay better than the Regional Center and Medi-Cal. And there's a very high demand at the hospitals right now. And so that's where all the LVNs. And honestly, I just don't have an answer. Because if I had an answer, we would have a greater staffing in our own household.

Lindsay
I know, I know. Tasha that's something that, you know, we've heard from so many families, you know, both within Undivided and all over the community. And it is really, it's an epidemic.

Lisa CK
Yeah, and I know, I know that a couple of years ago, there was an agreement that you could potentially have your hours, like, if you have Medi-Cal nursing LVN, you could potentially have your hours split among different agencies, which was not the case in the past. But even so, some agencies are not willing to work on a multi-agency case. So it's all very tricky, and I wish I had a better answer.

Lindsay
I see Laurie also had a question. And I know you sort of stated this right at the end, but I think it's worth repeating, Lisa. Laurie asked, Are these opportunities listed on the Regional Center websites? How do you find a full list? It hasn't been easy to uncover. Another thing, Laurie, that we hear over and over.

Lisa CK
So once again, some Regional Centers have been more on top of this than others, but every Regional Center should have on their website a list of vendors And it'll include vendors for all the different services that they offer, and social rec should be one of those categories. You can also ask your service coordinator for a copy of their vendor list, again, like some Regional Centers have had more success with collecting a variety of vendors than others. And so, I mean, I would inquire about it if you don't find it on their website.

Lindsay
Right. And then just another point of clarification from Tasha. She said, is social-rec funding only if you have Medi-Cal?

Lisa CK
No. It’s if you’re a Regional Center client. The reason I mentioned Medi-Cal is because a lot of children with complex medical needs have LVN care through Medi-Cal. I mean, sometimes the Regional Center will require that your respite come from an LVN if your child has certain medical needs, but also a lot of children qualify for Medi-Cal home nursing if they can find the staffing.

Lindsay
Right. And all right, so this question keeps coming up. So I would love to know the answer if the answer has evolved from when we first started talking about the return of social rec, and that's reimbursement. So if parents do have a hard time finding vendored social rec programs, can parents request reimbursement for non-vendor programs?

Lisa CK
I would love to know the answer to that too. Okay, so I have been told very firmly that reimbursement is not an option. And yet I have also been told by other parents that they were able to get reimbursement. So my sense, and I could be wrong on this, is that it may be tied to whether or not the Regional Center has adequate vendor lists in the first place. Because if they're not providing lists of vendors and people need these services, I don't know what other option parents have but to request reimbursement. So again, it may be that these situations have been granted as an exception to the general policy that is not being reimbursed. But that's what I've been seeing, is they say no, but then some people have been able to, possibly through the appeal process, I don't know. You know, the tricky part of the traditional funding route is that the providers do have to be vendored. Now on the Self Determination side, and perhaps Iris can speak to this, programs do not have to be vendored. And so that simplifies things a little bit. I don't believe that reimbursement is an option there, but the providers don't have to be vendored. So that's kind of a moot point, as long as it fulfills the goals in the IPP.

Lindsay
Sorry, I have an annoying follow up question. But what is considered an adequate list? Like you said, if there's not, you know, an adequate list of vendors.

Lisa CK
I mean, I would say a list that includes vendors that can provide services that your child needs, like, you know, if the vendors on their list aren't providing services within the scope of your child's goals, and what what they're trying to get out of social rec programs, that would be to me an argument for finding other other ways to approach the situation.

Lindsay
Right, right, always look to see what's available, see if it's not appropriate for your child. Note that, talk to your service coordinator. And, you know, a lot of the answers to a lot of these are “You can try it, you can try.”

Lisa CK
I mean, the other side of that is that you can also approach the vendor and see if they're willing to become vendored with the Regional Center. That's how a lot of these lists are being compiled is that parents are approaching community resources and asking if they would be willing to become vendors with the Regional Center. And that's another option.

Lindsay
Yeah. Right. And so are there limits? If we find the right program, right, then are there limits to how much social rec funding that a child can receive in a year?

Lisa CK
That is another great question. I have looked over the service standards for multiple Regional Centers. I have, so far, just kind of a sampling across the state. And so far, I've only seen one that articulates specific requirements in terms of limits and how much they'll fund, which is West Side. I've seen them say that they will fund I believe it's up to six hours a week when it's when it's hourly services. For camp, they have a two cycle and 60 day cap, so like two types of camps and a maximum of 60 days across the year. I think for education services, it's like up to 10 hours a month. They're the only Regional Center that I've seen so far. Now, Regional Centers may have internal policies about that, but they're supposed to be published in the In the service standards, and I've only seen, again, I kind of took a sampling of all the different Regional Centers, but I've only seen the one so far that articulates specific caps in the service standards.

Lindsay
Right. And just to reiterate, you know, social rec funding and camps are not relegated to summer, right? This can be utilized all year round, but you should check. Like Lisa said, check with the Regional Center for the limits so you can optimize when you're programming for these activities, right, since, apparently, right now, there aren't hard limits listed for a lot of Regional Centers.

Lisa CK
And they're not mutually exclusive, either. So like, they shouldn't be saying, I mean, unless there's duplication of services, they shouldn't be saying, “Oh, well, you're already doing social rec, so you can't have non medical therapies.” These are separate funding categories. So keep that in mind as well.

Lindsay 30:55 Alright. So what about, I know we had some questions, I think I saw Lindsey throw in a question about this, too. What about programs that aren't built specifically for kids with disabilities, right? This makes local neighborhood programs difficult to fund, right? I mean, unless you can convince them, like you said, to sign up as a vendor, they may not have ever heard of Regional Center, but is this a possibility?

Lisa CK
Even if you, I mean, even if you can get them to sign up as a vendor, you run into the parent responsibility issue, which is that when the Regional Center is looking at what generic resources you have accessible to you, they're also going to look at what community camps are available, what community activities, Girl Scouts, Boys and Girls Club, like YMCA camps, Parks and Recreation camps. And they're going to look at those camps and they're going to say, Well, why can't you participate in those generic community resources? And you would be expected to pay the registration fees for those programs if you had a typically developing child as well. And so they may say that the registration fee itself is parent responsibility. But if your child needs services or supports in order to access those community generic programs, that's where the Regional Center can potentially step in, and provide those services and supports that a typically developing child wouldn't need. I mean, there's a compelling argument if you have low income, and attending one of those camps is the only way that your child could meet the goals articulated in the IPP, you could request funding for the registration fee. But without that income, that financial hardship, you're generally going to be expected to pay the registration fee for a community program. Now, if your child is not able to access those programs and needs a specialized program, that's when the Regional Center can potentially pay the registration fee as well.

Lindsay
Right. Okay, and I do want to talk to you about additional supports, we're going to talk about aides in just a minute, so if if there's questions about that, we're gonna be covering that in just a minute. But another thing that you had mentioned prior, another category of funding that was restored, is educational therapy, right? So does that mean that we could request tutoring or educational therapy in place of ESY or after it's complete?

Lisa CK
No. Educational services are, as with everything at the Regional Center, they're going to look at generic resources first. And so anytime you're asking for something from the Regional Center that's in that education services category, it's got to be something that the school is not providing. So first of all, you may need to actually request the services from the school district first, and get something documented that they're not providing it or not willing to provide it or that's not a service they provide. And then bring that to the Regional Center and request those services. So with ESY, again, there has to be a compelling reason why you're not participating in the school program that was offered. And it would be worthwhile to request something different from the school first so that you can show the Regional Center that you made an effort to get the school district to cover the services before going to them.

Lindsay
Right. And I think maybe this goes beyond sort of summer services, but I know a lot in the past it's come up about ESY. Could it be a valid reason to say we're going, this is probably something you have to figure out also with the school district, but we're going to forego ESY because it's not an inclusive environment and we'd rather have our child in an inclusive environment instead of ESY. Is that something that the Regional Center would listen to?

Lisa CK
That could potentially, I mean, I don't know because these services are so new, but that could potentially be a compelling reason for why you want your child, say, to go to camp instead of ESYt. But you would need to really be able to explain why the ESY doesn't meet your needs. And I know that is the case with a lot of ESY programs is that the general ed population is not there. And there is no opportunity for inclusion during the summer very frequently. And so you could make that argument. I think it's too soon for me to have seen whether that's been successful, but I think that it makes sense.

Lindsay
I would love to hear because it's something I've heard a lot of families asking the question, but I don't know if they've gone to the Regional Center. So it's another one, like, you know, let us know what you're hearing or experiencing. Because I know, it's a question that comes up over and over. So, also, as we mentioned, another category that was restored was non medical therapy. So can you explain what that covers?

Lisa CK
That would be like art therapy and music therapy and equestrian therapy, as distinguished from hippotherapy that is provided by a licensed physical therapist. So this would be like, you know, therapeutic benefits that you get aside from like, trunk support, and things along those lines that are not provided by a medical professional, and are not usually covered by private insurance.

Lindsay
Oh, that's interesting, right, your example of hippotherapy, so it could be like emotional regulation, being able to calm, something like that instead of, like you said, the trunk support.

Lisa CK
Yeah, and I mean, I have seen people sometimes get that covered through their private insurance because it is done by a licensed physical therapist, just one who has horses, which is separate from, like you said, like the emotional regulation component and the calming effect, and anything else that comes along with that.

Lindsay
Got it. Tasha had another great question. She said, Do we have a list of generic goals that we need to request to have included in the IEP so that we have our bases covered?

Lisa CK
I don't think that we have a list of generic goals. But what I would say is, there's two ways you could go about it. Number one is think about what your concerns are for your child, and kind of write those out and think about what goals you would like to see your child achieve to address those concerns, or goals that your child has for what they want their life to look like. Because we're not just dealing with, you know, a deficit-based model. If you're a child that has specific interests, and wants to go into those interests in the future, that would be something to include too. The other way that you can look at it if you're really not sure is sometimes you just know in your gut that your child would benefit from a certain service. And you can kind of work backwards from there, like, you know, in your heart that your child would benefit from the service, so try to break down why. What services, what purpose is it serving, what is it that your child would benefit from? Sometimes you can kind of work backwards from that and understand why it is that you feel that your child would benefit from that program and kind of pick that apart, and then use those as goals.

Lindsay
Got it. Alright, so we're getting also lots of questions, obviously, big summer need: camps. So again, you know, this funding can be accessed beyond just summer, right? But how much camp funding can a child receive year-round, Lisa?

Lisa CK
So again, I have only seen one purchase of service document that actually articulates an explicit limit. And that the limit that they imposed was two cycles per year, and up to 60 days. So that that could potentially include spring break, that could include a winter break, that could include summer.

Lindsay
So same answer for social-rec and camps. It's that same gray area for a lot.

Lisa CK
We’re seeing things from different, yeah. For camp, two cycles, and then there's some confusion that I'm seeing over whether there's two cycles can both be in the summer, whether one has to be in the summer and one has to be in a different season. It's not entirely clear yet. We're hearing different things. So yeah, at least it's going to be during the time when the children are not in school.

Lindsay
Right, right. And then if a parent is calling their service coordinator, and it is a little unclear, and they're told, like, yeah, it has to be, you know, one in summer one in winter, right. Should parents ask like, can I see that in the standards of service agreement?

Lisa CK
That is always the first question you want to ask whenever a Regional Center says, Oh, we don't do that, or this is their requirement, or this is just how it is. That's the first thing you want to ask is can you send me a copy of the service standards to show that? Because often sometimes there'll be able to, and sometimes they won't because it's not in the service standards. So that's my recommendation to anybody who gets told no, like over the phone or verbally, or like we don't do that, is ask for a copy of that policy in writing.

Lindsay
Right. And I'm assuming that this is going to be the same answer as you gave for social rec, right, but again, if we want to attend a local camp, right, chances are not vendored with Regional Center, we already covered that really kind of generically with social rec. But I assume the answer is the same as you had with social rec, right? If they're not vendored, you can ask them to become a vendor.

Lisa CK
Yeah, I mean, it's the same answer I gave before, which is that it may or may not be parental responsibility if that's something that is available to the entire community. But there may be additional supports that you need that they may be willing to provide or may not be willing to provide. But if they're willing to become a vendor, you could potentially work things out on that end.

Lindsay
Right, which is good to reiterate, because I know it sounds like a long shot, but you never know. Okay, so aides, many of our kids, you know, they require more support, and some Regional Centers will provide aides who will attend camp with your child. So what do we need to know about aides?

Lisa CK
Okay, so you want to start with the camp and find out if they will staff a one-to-one aide.

Lindsay
That is appropriate for your child, right?

Lisa CK
That is appropriate for your child. Yes. Some camps that are big and established and, you know, have a lot of kids may be able to provide that service. And a lot of them won't if they're small camps, and they don't have a lot of staff. It may be, even if you're asking for it as a reasonable accommodation, it may be that it's not reasonable for them because it would be an excessive financial hardship to have to hire an additional person to provide that service. So that's when you would go to the Regional Center. And so it also depends on what kind of aide your child needs. So if your child needs an inclusion aide that can kind of help train the program on how to be inclusive of kids with disabilities, that's something that some Regional Centers already had in their service standards, and just couldn't be applied to social rec when that wasn't funded. But that's a service that's meant to be phased out, it's like they come in, they kind of train the staff and then they go. If your child needs a one-to-one behaviorist, that's going to need to be written up in the behavior plan. So that that recommendation needs to come from the behaviorists and the supervisors in the behavior plan. And that recommendation, they may need to observe the camp and see if it's even going to be a safe environment and whether they think that they can serve the child in that setting. So that recommendation has to come from the behaviorists themselves. If it's an LVN that you need, you know, again, the challenge with that is that it may be authorized, but getting it staffed is another question. So that's a challenge to think of ahead of time.

Lindsay
And when you say inclusion aide, what about a child who might need help, you know, with fine motor with gross motor, it's really just help participating in what activities are going on?

Lisa CK
That could potentially just be a one-to-one aide or health and safety aid. But again, you want to ask the camp if they can provide that service first.

Lindsay
Right. Okay. And I think you've covered this, but again, just want to be really specific. If your chosen camp is not vendored, you can still request an aide to help support your child at a non vendored camp, correct?

Lisa CK
As far as I understand, especially if it's like a community program that's accessible to everybody, and happens not to be vendored. As far as I understand, the camp itself doesn't have to be vendored in order for your child to attend with the aide. If you've had a different experience, I want to hear about it.

Lindsay
Yeah, please. And how, I mean, obviously, everything's based on needs, but how does a child become eligible for an aide at camp?

Lisa CK
Well, I think it's entirely based on needs and their IPP and whether or not they're going to be safe and supported and able to access the setting without an aide.

Lindsay
Again, list out those, you know, like you said, break that down.

Lisa CK
Yeah. And again, like, depending on what kind of aide they need, you know, again, like with the behaviorist, the behavior, they need to be writing something into the plan that assesses the need for an aide in that setting.

Lindsay
And does the aide need to be vendored, right? Is it direct pay or reimbursement?

Lisa CK
They'll generally need to be vendored from everything I've seen, so as far as that, they need to be vendored. So, I mean, obviously, if it's from a behavior agent, like an ABA agency, it's going to need to be one that's vendored with the Regional Center. Or, I mean, the thing is, you can also potentially request that ABA through Medi-Cal, especially now that people are on managed care plans, you may potentially be able to go that route in order to get a behaviorist at camp. In fact, the Regional Center might request that you do that first. So you can just be aware of that.

Lindsay
Right. So and then if you know someone you know who's great, like you're saying, like a health and safety or a one-to-one aide, if you know somebody that can be great for your child, can they go through the vendorization process?

Lisa CK
Um, so I'm not exactly sure how that works for for an aide for camp, but I know that other services do have that option, like for specialized supervision or respite, they do what's called an employer of record contract. Basically they register with an agency that handles the payroll and handles, you know, workers comp and all that stuff. And even though it's someone that you chose, they just go through the registration process with the agency and become an employee there. And then they handle the payments, the Regional Center sends them the authorization, and they handle the payments. I don't know if that is the same process for an aide. And I think, again, a lot of it depends on what the reason is for the aide.

Lindsay
And if our child is eligible for an aide, but we don't have someone, does the Regional Center keep like a list? You know, I mean, obviously, different respite agencies, they have a list of people. I mean, is it the same with aides? Can we ask our service coordinator?

Lisa CK
I mean, I think the answer is the same as it depends on what kind of aide.

Lindsay
But like a one-to-one aide, do they keep lists?

Lisa CK
I honestly don't know. It's so like, I mean, for a long time, we would see people asking the Regional Center if they had a vendor list for inclusion aides because that was in their purchase of service standards. And it's like, okay, great, but do you have this? And their answer was always well, we used to, but since most opportunities are through social rec, and we don't do that anymore, those vendor lists sort of fell apart. And so I don't know if they've been able to rebuild those lists.

Lindsay
Okay, so if someone's going, again, if you're going to ask your Regional Center, let us know, you know, I would love to know. I'll call mine and ask. And then a follow up question. She said, how do we request an aide through Medi-Cal? Who do we contact? I can't get through to MediCal.

Lisa CK
So if what you're requesting is a behaviorist aide, I mean, does your child already have ABA? And can you go to the supervisors and ask them to submit a request and justify that on a medical necessity basis that this child needs behavior therapy in that setting in order to be able to properly access it? I mean, that would be my recommendation. I don't know that Medi-Cal would pay for a different kind of aide, but for behaviorists, that may be an option. Okay. Also for LVN, also for LVN.

Lindsay
Right. I know you love my timeline questions. Lisa, how long does it take for an approval of an aide if you're requesting from Regional Center?

Lisa CK
That's a terrific question. In theory, when you have an IPP, there supposed to be somebody at the IPP who can make the decision. Now, I don't know about you, but I have never seen that happen. What I usually see happen is that we have the IPP, I make the request, and then they say, Okay, our funding committee meets on XYZ day, and we'll let you know right after that, so if they don't have somebody at the meeting, if you make the request, they're supposed to let you know within five business days, in writing after the IPP, if you've been denied for something, but if they don't have an answer for you at the IPP, or if they don't have somebody there who can make the decision, they're also allowed to schedule another meeting within 15 days so that they can give you a decision. And that, generally, is the timeframe for when the funding committee will meet. And then they'll notify you of what the decision was. So that's usually the way I see it happen. Now, different Regional Centers may do that differently. But that's kind of what the rules are in terms of timeline. So if you've requested an aide in writing, and it's been a month or two, you haven't heard anything, you should be following up because they should have given you an answer yes or no much sooner than that.

Lindsay
So we've talked about a lot of different services. Do any of these services cancel each other out? Like for example, can we get additional respite, social rec, camps and an aide if our child meets the criteria?

Lisa CK
So, I think that you need to make a compelling argument for why you need both, for example, camp and additional respite. Because it's not that they cancel each other out but they may duplicate services in terms of function. So if you send your child to camp, the idea is that you are getting some natural respite by virtue of the fact that they're at camp. Now, if you have a child who requires an LVN, and there are no LVNs, and you therefore have to be at camp the entire day to change diapers and do G Tube feeds, and do all the things that a behaviorist can't do, then you're not getting respite from the fact that your child is at summer camp. They're getting the benefit of summer camp and that social opportunity and that recreational opportunity to participate in a community program, but you are not getting respite from that. And if you've been in that position, then you know that, and so that may be an argument for still requesting additional respite hours, even though your child is at camp. There is no natural respite happening here, because I have to be there the whole time. So that would be an example of a situation where in some situations, they might cancel each other out because they serve the same purpose. But in that situation, they don't.

Lindsay
So you know, you've touched on behavioral services, really, we've talked about behavioral aides, right? But in general, right, summers without structure can be really difficult for a lot of kids. So can kids get additional ABA or behavioral intervention hours? You know, not talking about an aide at a camp, right, but just in general, can they get extra hours over the summer?

Lisa CK
Okay. So here's the thing that may be confusing is that this previously was a Regional Center question, because for families who had private medical insurance, and then Medi-Cal as secondary, generally those families were enrolled and the child was enrolled in fee-for-service Medi-Cal, and the vendor for ABA services under fee for service Medi-Cal was the Regional Center. And then they would contract out with agencies to provide the services. Now that all of us have been required to select a managed care plan as our secondary Medi-Cal insurance, your Regional Center might still be funding it right now as far as this transitional period. But once you are getting your ABA from the managed care, which is ultimately going to be the requirement, that's going to be a question for Medi-Cal. And the important thing to consider when you're requesting additional behavior services is that it's not based on your needs for additional respite. ABA is not respite and cannot be used as respite. So you have to be able to explain why your child needs more behavioral services over the summer. And there may be situations where they do. I mean, a lot of kids don't do very well in unstructured periods of time and they need that continuation of structure. And they just they need more support over the summer because they're not in school. And so it has to be something, that recommendation that's coming from the provider from the behaviorist, and it has to be based on the child's need, and not just like, Oh, they're not in school, so I need someone to watch them. That's not a reason to have more behavioral services. So just make sure they're documenting the medical necessity of it and why the child needs more support over the summer.

Lindsay
Right. So all these requests, right, if we're denied for any of these summer requests, I think, you know, hopefully, we can work with our service coordinators. But if we're denied, what are our options, Lisa, What can we do?

Lisa CK
Request an appeal. Request an appeal. I don't want to generalize, but very often, when you file a request for an appeal, it's not actually going to go to hearing because the Regional Center, their legal department will reach out to you and see about potentially doing a mediation or just otherwise resolving the issue without going to hearing. And that may expedite things, but I would file a request for hearing quickly.

Lindsay
And just briefly, do we call our service coordinator and say I want to file an appeal? What do parents…?

Lisa CK
I would not call them. I would submit that request in writing. When you get when something is denied, they're required to provide a Notice of Action. If they tell you no over the phone, you can follow up by email and say thanks for our conversation today, please send me a written notice of action. And that written notice of action should also include the instructions on how to file an appeal. Yes, you can write to your service coordinator as well. But it should all be in writing.

Lindsay
And I know Donna just shared the article that Lisa worked on with us about the entire appeal process for, you know, ages three plus. So definitely check that out if you have questions and want more details. So, I mean, Lisa, what can parents do right now to get started?

Lisa CK
Again, start with the IPP. Look at the goals. In the IPP, look at the concerns that you've expressed. If your child is, you know, old enough to have expressed their own goals, look at those. And make sure that the IPP, that what's written in the IPP supports any funding requests that you might make, and if not, call an IPP. Discuss the goals, discuss the concerns, discuss the hopes and dreams, and make the request for funding as well.

Lindsay
Absolutely. I know I'm looking at the time and it's time to wrap up. I hope we got to a lot of the questions. And if we didn't, you know, please, like continue the conversation. Lisa always comes in and, you know, she checks the comments. So you know, and then even better, you know, you can take it over into our Facebook group as well. So other parents can be weighing in with their experiences and what they've seen, because I know, you know, as you go through the process, new questions come up. So we want to know how it's going. But thank you, Lisa, I know you wish that you could give people hard black and white answers for every one of these questions. And unfortunately, it's just not how the system is set up. So thank you for letting us know the options and, you know, how we can ask about them and lighting that fire under us to just get going because if there's roadblocks, right, we need time. So if there's one thing that we've learned today, as Lisa said, call your service coordinator ASAP, just get it started.

And also remember that if you want a summer partner, remember that our Undivided Navigators are here, just click on the kickstart link in the chat you can schedule with our care team right from the link. We'd also love to hear again how that summer search is going. So I've been talking about our Facebook group. You know, you can come in, compare notes and are in that group with me Lisa, Donna, Iris, and the rest of the Undivided Navigators. We’re in there with an incredible group of fellow parents. So we're talking about camps, summer, end of your IEP service providers, our own mental health needs, and more. So Donna's going to share that link in the chat. You can also follow us on Instagram, YouTube, and Twitter, stop by and say hello. Our mission is to support you so your children can thrive. And we want you to thrive too. So thanks for being here. Sending you good summer vibes on this rainy day. Have a beautiful weekend and we hope to see you soon. Bye, everybody. Thanks, Lisa.