SCDD's Chris Arroyo explains how Regional Center is restoring funding for social-recreational services, what to expect, and how to access it during this Undivided Live event.
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Jason Lehmbeck
So we're live. Welcome everybody to Undivided Live, our weekly live chat. Today, we are so excited to talk to Chris Arroyo from the State Council on Developmental Disabilities as we learn all about the return of social rec services through the regional center. And for those of you who have kids born after 2008 you may not have heard of it, we're going to tell you all about it. Those of you who have kids pre 2008 I know you're excited about this, you know, 12 year hiatus coming to an end, and what that means, and we're about to find out. We're also going to talk about the restoration of educational services and some changing expectations around regional center IPP goals. So we have lots to cover. I'm Jason Lehmbeck, for those you don't know, I'm the CEO of Undivided and dad to three boys, including Noah, who's a Lanterman client. He is counting on me to learn all about what this means for him and the cool social rec services he might be able to partake in. I'm also here today, as always, with Lindsay, who heads up our content and community teams at Undivided. Hi Lindsay,
Lindsay Crain
Hey everybody.
Jason Lehmbeck
We are thrilled to welcome our esteemed guest. Christopher Arroyo from the State Council of developmental disabilities. Chris has worked with individuals with developmental disabilities and their families for over 30 years. He is the Los Angeles Regional Manager for the State Council on Developmental Disabilities, where he has worked for over 22 years. Chris's experience includes working as, this is a laundry list, but important because it's amazing, an intern at a State Developmental Center, a service provider running programs for children and adults with developmental disabilities, a client's rights advocate at a State Developmental Center, a contracted service coordinator for a regional center, Chair of Santa Monica's disabilities commission, and as if he had more time, an advocate specializing in regional center special education legislation and systematic change, Chris has become known as in both the English and Spanish speaking communities for the trainings he has provided to 1000s of attendees. We are so honored to have an important change maker and advocate for families here with us today to guide us on how to make the most of these most recent critical changes. Hi, Chris, welcome. We're so happy to have you.
Chris
Thank you. It's great to be here. Thank you. Happy to share this information today.
Lindsay Crain
We are such the underachiever, Chris. So thank you, like Jason said, thank you so much for being here. We have, I know, a ton of questions, so let's just dive straight in. So we we're going to get to what's covered and what isn't in just a minute. But first, like Jason said, many parents, you know, they're like, oh, this sounds great, but their kids were, you know, born after 2009 and so they don't, they don't have any idea what the social rec services are. So if you can first, just define that, so that we're all on the same page.
Chris
Sure. Generally speaking, social recreation services are more or less programs or activities at recreational settings. So I'm going to talk as if the pandemic doesn't exist right this second, but it includes things like at parks and other places where people can relax and have fun. And so when we're talking particularly about school age kids, it's basically where they can learn social skills. So there's a lot that goes along with that. So it's meeting people, more or less in their own peer group, both age wise and with a disability. People learn social skills in these programs, such as healthy boundaries, how to make friends, maintain friendships, and then they may additionally have supervised outings to settings in the community, like movies, baseball games, parks and other places, given my backdrop, I should probably mention the beach or Santa Monica Pier.
Lindsay Crain
Well and before, again, before we get into the details, because that that all sounds fantastic, and I know there's a million, a million questions in there, I did want to have, like, a quick little history lesson. So why did these services disappear for 12 years?
Chris
Yes. So the answer is actually really simple: to save money. That's it. So back around 2009, you all may remember the recession, or you may have read about it or heard about it, and the bottom line is, is that the developmental disability system, DDS, was tasked to save from their budget about 10% of the overall budget amount. And so consequently, some services were changed, but others were suspended. And so these services existed before. So social rec, camping, also includes educational services for school age kids, and non medical therapies. So these things always used to exist, and, and, but it was in, I believe it was June of 2009 where the law took effect and basically indicated that those services could no longer be provided. There were some exceptions. So, for example, with non medical therapies, one could get some of those services, but only if they could demonstrate that therapies were really medical. So for example, if somebody had cerebral palsy and needed swimming lessons, but all that swim lessons was about relaxing the body and the water and so on, and really alleviating some of the spasticity and so on, then that would make it a bit more medical than it would social rec or non medical therapy. And so if you could turn it into a medical one, there was a way to to get around that restriction, but it was pretty tough to do, and not everybody necessarily knew about it, although we've been training on it for years.
Jason Lehmbeck
This is, I mean, such exciting news, it would seem. And I know, you know, I could speak for myself and lots of families there's like, oh, what you describe as social rec. I can think of so many things that Noah would want to have access to and be able to build those social skills and whatnot. But how do you, like, if I'm a parent, you know, going into my IPP in the next couple of weeks, like, how should I think about what, what could be covered, what isn't covered so that I'm advocating effectively for the right stuff?
Chris
Well, social recreation is, is a pretty broad service. It's, you know, I don't want to say it's all encompassing, because that's probably overstating it a little, but there's a lot of different stuff that you can, you can throw into that category. So, you know, so long as it's social recreational, so long as it's going to help someone develop those social skills. I think you're in good shape asking for it. That said, one of the things that I think people may want to do is ensure that their IPP goals are very tight and require this service to be implemented in order to reach the goal. So for those of you who have school aged kids or or your children are adults, and you've already done the school thing. You all know about the need to have very specific IEP goals with the school system. And so I think one of the things we've here heard at many, many trainings is the goal has to support the service. So if you want to speech if you want speech therapy services at the school, you've got to make sure you've got goals for speech on the IEP. In the same way the IPP with the regional center needs to have goals that support that. I think many people are used to seeing very broad, general goals on the IPP with regional center, and I think that we need to start getting more specific to better support the request for the service.
Jason Lehmbeck
Could you go, like, maybe we could take a specific example just to help think this through. So if we're thinking about swimming in the frame of social skills and the social rec, like, I know every child's different, but like, what's a way to think about a more specific goal and connection to something like that?
Chris
Well, the first thing is, for swimming. I'll use a slightly different example, because in that example with swimming, the bottom line is you would probably have an easier time doing swimming for health and safety. So if your child doesn't know how to be water safe, can't tread water, etc, I would try and go the health and safety route, but for something, oh gosh, let's say, like a Saturday social recreation program where people go to different places, say once a month, or even weekly. For a program like that, what I would want is, what I would think would be optimal, would be goals that can only be reached by participating in that program. So making friends, maintaining friendships, maybe some specific things related to those friendships, which may include conversational turn taking. And I know that these are much more clinical sounding goals than what people are used to on the IPPs, but that's in line with the kind of stuff that I would recommend people do. I don't think you're going to get in any trouble going too specific unless, of course, it's so narrow that only this one little service will do the job, but if you describe the service that you want, that would be a good thing.
Jason Lehmbeck
Yeah, that makes sense.
Lindsay Crain
But when you say IEP goals, I guess it triggers something in me. Does that mean that say you have, you know, what if a child then isn't making progress, or isn't becoming social enough, or is that sort of how it's going to become? So if they're not seeing progress from that program, they can say, like, cut, like, this isn't working?
Chris
I think so, yeah, which, which means that the goals need to be written specific enough so that it can be demonstrated that progress is being made. And so, you know, for so to that end, I would get kind of creative about what are the smaller things. So, you know, sometimes when we think of big things, like tying shoes, right? Tying shoes is always the great example that we use, because we're like, okay, let's use slip ons and forget it all together, exactly. But the thing is, is that you can create a goal for, you know, tying shoelaces. And the first goal can just be crossing the two shoelaces. And if progress can be made on that, then you can move on to the further steps in the process to be able to accomplish the task. So breaking down what it is, or breaking down what exactly is trying to be accomplished by the social rec activity is important to describe in the goal and getting down to the level of detail where you can demonstrate progress over the course of a year.
Lindsay Crain
For the social programs, it's still, it's different than what we're we traditionally think of as, like, social skills, right? These don't have to be, you know, ABA or behavioral programs, you know, you'd always hear about sort of social skills programs that would kind of go alongside but these truly can be just social, non therapeutic. Am I hearing that right?
Chris
Yeah. Purely social. No need for therapeutic. But there is a need to make progress on the goals, and so that needs to be measured or demonstrated in some way, right?
Jason Lehmbeck
One question, I know this is hot off the presses, but like, if we're thinking about, like, trying to figure out who's vendor at my regional center for this, is there a list out there tips on how to get access to that?
Great question. It's, it's as if you actually knew the real answer, and I bet you did. So what it is is every regional center has to post a list of all vendors for all of their service categories. Usually you can find it under transparency so most of the regional centers have some kind of, I wouldn't even say most, I believe all of them, have some kind of transparency portal. So look for the transparency portal. If you can't find it, go to the search box and look it up. But that they that information is there, they're usually listed as either a giant Excel spreadsheet or just maybe a long list that you just scroll through in your browser,
Lindsay Crain
I want to get, I want to get, I have a question about the vendor and versus non vendor in a minute, but some of the other specifics that I know a lot of people asked. So I know this is it's always up to the individual child, but is there sort of a standard limit or an expectation of hours? Or like, what can parents expect? Like, you can say for respite, it's up to every child, but people kind of know there's this bank of like, you're not going to get much more than this a month, right, even though maybe that's not something written in stone. But is there an expectation that parents should have, for example, could could it pay for like, a five day a week all summer long camp. Or is there a limit?
Well, you know, so social rec is different than camp. That's technically a separate service, but although we might think of it like in the same, you know, kind of general sphere or category. But can you repeat your question, how about that?
Lindsay Crain
Is there, is there an expectation of hours that parents can expect? Like, what sort of a ballpark? Is there a ballpark of, like, great, you can get, like, three hours a month. Or is it, could it be something that's like five days a week for three hours a day?
Yeah, I'm going to be dead honest. I'm not sure. I don't know. My my personal expectation, which, you know, your miles may vary, because I'm not positive, but my personal belief is probably about maybe two to four hours a month, you know? I mean, you got to be able to do an activity, right? I mean, if it's virtual, there might be, you know, might be able to manage time a little easier. But if you're going to do an activity out in the community, it's going to take time to to meet up, hang out, do your thing, I would expect at least two. I mean, I'm not going to go to the pier for two hours. I want to hang out for four. I want to knock down, you know, Kewpie dolls and fire the water guns and win prizes. Two hours is barely enough to, you know, get much done. So that would just be my guess. But again, the goal on the the goal for on the IPP, should help determine that, because if someone is trying to make this much progress in a year and and is able to do that with the appropriate support, then I think that the case can be made that there needs to be a more intense level of service for that. However, if it's, you know, if we're talking about things like, hey, social rec just sounds fun, well, then, you know, I don't think we're going to see this kind of thing. I think we're going to see something a little more reasonable, or what we would expect. When I ran a social rec program ages ago, we met once, once a month on a Saturday, and we did it for, I believe it was about four and a half hours. Is what we did.
Lindsay Crain
About the camp. I did want to just ask for clarification on that, so summer camps, right? Or Spring Break camps, so does that not fall under social rec? Is that something different?
It's technically a separate service, but it's coming back just like social wreck is coming back. Camping was available before 2009 and now it's available once again. There is a big difference, though, because one thing, because you mentioned briefly before, vendored versus non vendored. And that's an important distinction to make, because if somebody is in self determination, which, and I know I'm bringing up something kind of brand new. So, but under self determination, people can get camping services through non vendor camping services. But then, if you're under the traditional system, you've got to go through a vendor camp. That said, I'm going to throw in something else that's even going to make it a little murkier, which is, many of you have heard and many of you are familiar with the HCBS new rules, which more or less says that everything's gotta happen in an integrated way. Can't have segregated programs. Self determination, because it was a new program, is required to follow the HCBS new rules. So anytime a new program gets created, you have to follow any kind of new pending rules that are are coming down the line right away. So self determination is going to have to follow the HCBS new rules, but under traditional services, it hasn't taken effect yet. And so those kinds of camps may be available, but I'm saying this with a huge caveat, which is more or less the regional centers are doing everything they can to get all traditional services aligned with HCBS, so that when it is when it does take effect, it takes effect seamlessly, without any issues.
Lindsay Crain
Okay, I have a lot of questions in there. I'm sure Jason does too. I was like, Okay, so where do I start? Well, first, a really basic, since you were mentioning the HCBS, does that mean that if you're using, well, I guess it's a two parter, traditional system, can you still with the could you still get a camp covered that is designed for and attended by people with disabilities?
Theoretically, yes, if the regional center has worked with that camping service to try and make it integrated, then it depends how far along they are in that process. And I can't give an update on that process, because I don't know where they're all at. I know some programs were higher priorities to to prepare for HCBS than others, but I can't speak to the to the super details, because I honestly just don't know.
Lindsay Crain
But what you just said about self determination. So if you're using self determination, then you cannot, would you not be able to then go to a camp that was, you know, exclusively, maybe at a therapy center but if it's for only people with disabilities, then you can't use the self determination dollars for it?
Correct, correct, correct. That's why I my hope is, is that many of the camps out there will, those who've traditionally served people with disabilities in the past, that they will say, we're now an open camp, and we happen to specialize in providing services to people with developmental disabilities, so as long as they have you know other you know typical people around at that camp who are participating, they will be able to follow through on that promise.
Lindsay Crain
Got it.
Jason Lehmbeck
I know, you know this, like this, can be overwhelming and confusing for the average parent such as myself, and just hearing all this, it's, you know, thinking about, how do I start? What's the first step I can take? To start taking, you know, taking advantage of this program in the right way, or these new programs that are coming back online, online for my child, and think you gave us a nice pathway for that, and thinking about the IPP, thinking about specific goals related to your child that you want to see progress against. So if we think about like, the Saturday activity example you gave earlier, how do I best prepare for that IPP meeting to say, okay, like I know my son, like I want him to build these skills. Do I need documentation? What should I bring to the to that conversation and make sure I'm advocating the best way?
Well, I would say the first thing I would say is, Uhh? I'll pull out the Scooby Doo thing. But the reality is, yeah, there are some very specific things to do, and they mostly involve educating yourself. So I would suggest, first of all, people are here. So I'm going to assume that people are here and they're involved in some kind of group, and parent support groups and other kinds of groups where people rally around these issues are a great place to learn, learn the information. The other thing is, is go out there and search your resources. So our agency, we have a guide called the IPP strategy guide, and it talks about how to align your goals to get your services the Disability Rights California on their website and their publications and resources section. I think many, I hope, many people, are aware of the Rights Under the Lanterman Act, which is about a 350 page book about the regional centers, and there's a whole chapter, just a whole section, just on IPPs. So I would say that those are two really good places that that people can get started. And I'll be happy to provide our email address. You can send me an email and ask for a copy of that guide, or I can provide it to you all, and you can distribute it, or both.
Lindsay Crain
I wanted to go, well, yeah, because I think a lot of, I was thinking the same thing that you just asked, Jason, is, what do? I'm an over preparer. So, you know, I thinking, great. How many letters do I need? Like, do I need to be really, you know, bringing things from like, her behavioral team, or from her, like, you know, are really going to need all that supporting sort of, you know, documentation and letters to make sure that we have that backup kind of that you're talking about, right?
Well, it's funny, you mentioned that Lindsay, because in the old days, I would have said, you know what? Get, get everything together and demonstrate all be able to demonstrate all the deficits in social skills that your child has, and and we would approach it from a deficit based perspective, right? One of the things about our system is that it's, it's been deficit based for many, many years, partly because it may have arisen out of the medical model. And so consequently, you know, these are, these are things that need to be fixed with people, right? This is why we're moving to person centered planning, because instead of looking at, you know, look, if, I mean, I love using this example, because it just makes it real to people. If I stink at math, and we do a deficit based analysis and provide me services based on that, I'm going to be in a day program where I work on math six hours a day. And if I stink on stink at math, do you think I'm going to be happy working this stuff out? I'm going to be frustrated. I'm going to be hating life. So you know, why would I be sent to accounting school when I stink at math, when, in fact, I want to build a completely different life? And so what I would look at is, I would mention the deficits for sure, because some some people are still operating in that model. But I would also talk about why social rec skills are necessary to achieve the life that somebody wants to build, whether that's because they want to get a job and they're going to have to interface with people, whether it's because dot, dot, dot, get creative, that's where it's at, just to have a fulfilling life. Have friendships, right? Sometimes friendship, just one good friend, can make the difference between everything. You all know that better than than even me.
Lindsay Crain
And which is a one of the biggest challenges for a lot of our families, even that one friend, right?
Totally, oh, 100% Yeah.
Lindsay Crain
Thank you for for stating it exactly like you did. I love that. I really love obviously, the whole, the person centered planning, the entire shift, but even the way that we're presenting these things, and if we're being asked to then have all this documentation. I mean, like you said, we can have that ready, but we can also have this other half ready, and this is what, yeah, towards. We're really big on vision statements and working forward. So, you know, it's really, it's like, here's, here's the immediate and here's what we see and here's what we need to do to get there. So it sounds like this sort of, it fits in that bucket as well.
Yeah, yeah. That's, that's exactly right, right?
Lindsay Crain
And we have, I know we have a lot of questions coming in from the chat window. There was another question about self determination, can families add this to their self determination budget mid year?
Yes, yeah. Well, mid year, you would probably have to go and and get approval, unless it was less than 10% that you were shifting around. But if this is a new like, you don't have it on your self determination program right now at all. Yeah, you should ask for an IPP and adjust your budget and make the changes to obtain this service. And by the way, this is a service under self determination that has been in existence from day one. So one of the great things about self determination is the fact that, or one of the great things up until June 30 of this year was that self determination was the way to get access to camping, social rec and so on. These these things that were suspended did not apply. That suspension didn't apply to self determination. But as of July 1, when this law was suspended and these services return, now it's back for everybody. Doesn't matter whether in self determination or or traditional services.
Jason Lehmbeck
That's great, equitable access. And I know we've talked a bit about the idea of vendor programs, and especially in the traditional system, and one of the questions we're hearing and from a number of folks is, you know, a shortage of vendors. You know, this type of program not offered at my regional center, but at other regional centers. So can you talk about how to navigate that?
Well, I think that that's, you know, what you're raising is more or less a systemic issue. If there's a shortage of vendors and there are wait lists, and you're dealing with all that kind of stuff, you've effectively been denied the service. Period. And so anytime someone's denied a service or there are disagreements about services, there's a process for that. It's called the fair hearing process. And so ultimately, if a service is being unnecessarily or unreasonably denied or delayed, I would say, you know, maybe after six weeks, two months after it's been authorized. You're waiting around, you still haven't gotten the service, you can consider doing a fair hearing. Now I say that, like, consider a fair hearing like, okay, not a big deal. Just, you know, you got some time on your hands. I know that's a big, huge deal, but that's, that's really the way to to speed it up and speed it along. The other thing is, people can do some systemic things regarding that, because if it's a systemic issue, it it needs a systemic solution. So one of the things I would recommend is is basically going to the Director of Community Services at your regional center and telling them, I'm aware there's a shortage of vendors who provide this service, therefore, I'm requesting that you develop or can you tell me, are you developing more vendors? Are you looking? Have you announced any funding to to help people create these programs? What do we have? Because we need, we need a solution, and I understand it may take some time to establish those vendors. But you know, my child only has so much time before they're not meeting their goals.
Jason Lehmbeck
What was the name of the person at regional center?
The Director of Community Services. So that's the department at the regional center that's responsible for vendorizing the vendors. Yeah. Okay, that's a little repetitive, but vendorizing the providers and they also do quality assurance work with the providers, trainings, and so on. And so they can do that. If you find that the that the Director of Community Resources is not able to move fast enough, I would try and have a dialog and really understand what's happening. But if you feel like there are unnecessary delays or it's just taking too long, you can go to the board of directors and inform them. So you can go to a board meeting and being virtual now, that's wonderful. And you can testify and say, hey, look, here's the issue. Present it. And then just say, Hey, you board of directors, you're the boss of the executive director at the regional center, we would ask that you make a motion to to have the executive director prioritize establishing additional vendors for the following services: social rec, camping, and then list the things that you're having trouble getting to. Then show up with lots of other people, because numbers help. If you're one person, meh, maybe it's not a systemic issue, but if you show up with 50 other people and it's affecting 50 people, well maybe it's not so much of an individual issue anymore. So helping the the Board of Directors see that it is a systemic issue needing a systemic fix with their intervention, that may be a successful strategy as well.
Lindsay Crain
I've talked to two service coordinators this week from different regional centers, both of them saying, we don't, you know we need, we need more vendors, like, if you know people send them our way. So does that mean? I mean, as parents are asking for this is there, is it only self determination where they can really get reimbursement? Like, if they're, like, here's this program, but they're not vendored. I mean, they're saying, like, great, send them our way. They can go through the process. But is there any chance of, sort of great we're going to this camp, can we get reimbursed?
So I don't believe camping is one of the reimbursable services.
Lindsay Crain
Yeah, yeah. Like a social work program, yeah.
Chris
As far as I know, those are not reimbursable services. And if I'm wrong about that, please somebody correct me in the chat. If there are any regional center staff here, please let us know. But no, as far as I know, that's not one of the reimbursable services. There are some, but it, it doesn't include camping or social rec, as far as I know.
Jason Lehmbeck
Okay, so just, just. So everybody is clear on this, this, this took effect July 1.
Took effect July 1. So my my expectation, without any confirmation at all. So this is my guess, but I'm fairly confident that it's accurate, is that the regional centers have been, the directors of community services have been trying to develop, you know, these kinds of services, making sure that there are enough vendors and capacity out there. After all July 1, this was passed and, or took effect July 1. What, here we are in early November. So math, okay, four months, and so I would expect, you know, that they're probably working on it. How much, how many resources they've been able to establish? I'm sure that's different at each regional center.
Lindsay Crain
Yeah, covid makes it harder. So that's what, you know, when I talk to coordinator, she's like, Yeah, a lot of these went out when the funding went out, and then covid hit, and then we lost a lot more. So they, you know, it was at a very positive way. These service coordinators were like, we need, we need vendors, like, send them our way. They are definitely looking.
Yeah. Well, and that's the thing. I mean, you know, if they've had a couple months to work on it. And you know, people, you know, I'm hoping people would be understandably patient and having this stuff set up. But you know, I also know that there will come a point in time when people are hearing these things and not willing to be patient anymore. And so, you know, that's where I think the systemic fix of going to the board of directors and making a specific ask or doing a fair hearing or both, maybe the options that can help people get there.
Lindsay Crain
We also had, I see a chat window, a follow up question to when we were talking about the HCBS. It says I thought traditional services had to follow HCBS come 2023.
That's correct. Okay, that's correct, yeah. And like I said, the regional centers, as far as I know, are doing their best to transition providers over into a model consistent with HCBS. That way, when the time comes, no changes need to be made. We've already transitioned over.
Lindsay Crain
And so, and I know providers are obviously very savvy and on top of all of this as well, but when you were saying, the programs just need to say, like, we're open to all, this is what, you know, we specialize in a camp. So everyone, if there's, if there's a camp that you like, that's through one of your, you know, your providers, or one of your therapy centers, or something that you've gone to every year, if it's that kind of a camp, then they should be able to become vendor. I mean, ostensibly, right?
Theoretically, yeah, yeah.
Jason Lehmbeck
And thinking about, like, different ways you can bring the social rec to life, like, what about the concept of paying for an aide to be with the person in a social environment, or a typical, you know, environment, to bring those two two ideas together?
That's possible, but generally speaking, not always done, because there's a presumption that in order to participate in a social recreation program, that people will be able to do that in, typically, a small group setting. You know, the ratios may be different, you know, according to different programs, but generally speaking, it's, it's done in a small group or even a medium sized group environment. I don't know the right word there. So, you know, an aide can be done. But the thing is, is, is why the aide is necessary may factor into that decision, if the aide is there because the person may have socially inappropriate behaviors, and it's to manage and intervene appropriately. You know, someone may call into question, well, is social rec appropriate for that person, if their way of interacting with people may be in a lot of socially inappropriate ways.
Lindsay Crain
Which I would say it's even more important for them to be involved in those opportunities.
Which is, then, why I think it would be even more important in those circumstances to define those goals and demonstrate that the need is, is, is, you know, if not critical, a priority.
Jason Lehmbeck
Yeah. I think that's, I mean, when you put all those the big picture together, right, like the HCBS and, you know, social rec, it's like, well, there, like, if we don't have these supports and services, then it's, it's not going to happen, right?
Yeah, yeah. And there's also, in addition to this, and not to, if I'm derailing it too much, get me back on track. But there's, there are additional services, so there's non medical therapies. Non medical therapies is, is huge. That can be art therapy, dance therapy, music therapy. It wasn't listed in the law, equestrian therapy, but equestrian therapy used to be very, I won't say very, but relatively common, least to the people who I came across, and so ultimately, non medical therapies are back on the table. That's a big deal. Now, I know people made a big deal in 2009, one of the things we got a lot of calls about, two things, actually: equestrian therapy and martial arts. Yeah, so martial arts, if you're going to go for martial arts, if that's something that your child needs, you're going to have to talk about all the reasons why martial arts is is necessary from a non medical, therapeutic perspective. And then the other thing, which is my all time favorite thing, is, with just me personally, is what I call the gravy. I don't know what else to call it. It's the gravy. So it's educational services, which have been gone forever, right? Everybody we've known for, like, the last 11, 12, years, if, if it's school related -- done, like, we don't even need to go to regional center about it, right?
Lindsay Crain
I have to say that was, my daughter was born in 2009 so it was always like, never mentioned, they do not don't even think about it. You can't even ask about it. So when you you mentioned this, it was like, what? Like, this feels like another universe.
Chris
Yeah. And so what the gravy is, is, it's the idea that the school district is responsible for school district services. Fine, like that's what we've been used to for the last 12 years. Easy. If somebody gets an evaluation from the school district and it says that they are recommending, okay, I'm going to use an outlandish example, or maybe it's not, but let's say you got an eval that says two hours a week of speech therapy. Okay, great. Then you go to the IEP at the school, and the school says, Wow, some evaluation. We see that. We think that in our offer of FAPE, it's appropriate to offer a half an hour of group speech per week, and now you, as a parent, are standing there going, but what about the other 90 minutes, right? And maybe you're not standing there going, what about the 90 minutes? Maybe your face just turned completely red, and there would be lots of weird symbols in front of your mouth if it was captioned in real time, right?
Lindsay Crain
Favorite emoji.
Chris
Exactly. And so consequently you would have been stuck six months ago, a year ago. Now, because the gravy is back, what that means is you can take that two hour a week recommendation for a service, take the IEP, demonstrate that it's only offered for a or you only got a half an hour from the school, and so you're asking for that 90 minutes from the regional center. That's the gravy, the main meal comes from the school, and the gravy, the icing, I don't know, the frosting, I don't know what I'm going to call it, but that comes from regional center. Now here's the thing, though, and this is going to put put a damper on things. You gotta go to generic services first. So if you're short on speech therapy, an alternative to the regional center and the school would be health insurance. Health insurance provides speech therapy. So if you can get it through your health insurance, through Medi-Cal, wonderful, then you don't even go to the regional center. If you can't get those services, if you can't get the gravy from a generic source, then what you do is get your denial letters. And present them at the regional center and say, hey, look, I tried to get the speech therapy from everybody else. Here's letter number one, letter number two, letter number three, and we couldn't do it. So here I am asking you, as the payer of last resort.
Lindsay Crain
Does it matter if it's for educational or medical purposes, or doesn't matter for either?
It's educational services, which is why the evaluations from the school district would actually come more into play. So yeah, it's technically educational, but that's within the educational form. Many families have reported to us that if it's in the educational form, right away, the regional center says, Okay, we're barred from doing, we're not allowed to do educational therapies. Now they're back, okay, so so long as the generics have been exhausted, if they're unavailable, by the way, another, another way to measure unavailability is if someone never responds. So keep that in mind as well. If, if Medi Cal is available, let's say you've been institutionally deemed or you've got Medi Cal for whatever reason. The bottom line is is Medi Cal may not even respond to your request. So that's where letters of understanding become really important. And so what I would say is you can write a letter to Medi Cal and basically say, I've made the request for the following services on these dates. You have not responded to me. I am requesting as someone, get back to me please, if anything in this letter is incorrect, if anything is letter is wrong, please get back to me in a reasonable amount of time, and then if they don't respond, it makes it look like everything in your letter about your dealings with Medi Cal are factually correct, and you can try and use that with the regional center as a not official denial, but not getting the service, which effectively is a denial. So there is an equivalency between a long delay equaling a denial.
Jason Lehmbeck
Yeah, yeah. It seems like, I mean, this is big news. The gravy is back with, with the path on educational therapy, there's this process you're describing, which is you have to make the case with an assessment of need and then a vetting of a proof that you've exhausted the generics and proof, which is the IEP, that the school is not matching what the assessment says.
Exactly. And I think, I think one of the things, one of the places we saw the greatest use, or the greatest impact of the gravy, was at the time, 12 years ago, ABA. ABA was was definitely one of the things, because it's a relatively expensive service, and we used to get complaints from families all the time that they had difficulty getting it from the school district, even to the point where some regional centers created collaboratives with their local districts, with with an a pre arranged agreement to split the cost of ABA, for those reasons. Yeah, so, you know, going insurance, getting and getting your ABA in addition to what the school can offer, great. But you know, if it's not available through health insurance, for whatever reason, waiting lists, denials, get those letters, write those letters of understanding and provide it to the regional center and ask for that service from the regional center.
Jason Lehmbeck
There was another question that came up, like, can tutors be requested for educational services?
Lindsay Crain
Or ed therapy? Yeah, like one or the other.
Ed therapy sounds a lot like an educational service, yeah.
Lindsay Crain
So maybe, so that's a maybe, right? Like, I mean, you can ask, though, right? Is that what you would do like for educational therapy for your child? You go see if you could get that in the IEP, and if they say no, then you would take that back to regional center and say, you know that they won't include this in the IEP.
Couldn't have said it better. Yeah, that's it.
Lindsay Crain
That's huge.
Chris
Yeah. And it's an easy formula. Substitute whatever service you want. And the example you just gave Lindsay, right? It's an easy formula.
Jason Lehmbeck
How far? And I know there's no hard black and white on this. But how far do you have to go on the school side? You have to go through due process, or you just, you advocated for this thing, the tutor or service, or whatever else, they've said all we're going to give you is x, which may be fewer speech hours or no tutor for you, and that's all you need is to take the IEP back to the regional center, say this is what they're providing in the school?
Exactly, yeah, yeah, exactly.
Jason Lehmbeck
Got it. So there's another, you're just full of all this, these lovely insights. There's another one we understand you're seeing some possible shifts in how judges are talking about IPP goals, I think it kind of connects potentially to what you were saying earlier, right?
Yeah, yeah, yeah. We've noticed that that with decisions coming out both pertaining to self determination and traditional services, that it seems like OH judges are relying more on the IPP goals helping determine or helping them figure out in their decision making. And so ultimately, if, if that's going to happen, then I then, I think that we need to look at goals very carefully and strengthen them. I can't see any harm in strengthening a goal. I don't know what the downside is. Right? I mean, unless you get so specific, and it's about a different service than what you're requesting, I mean, right? A weird pitfall there. But yeah, I don't, I don't see the the danger in that. So even if I'm completely coming out of right field with this, and even if I'm like, so what? So I spend five minutes more. Alright, it's not going to be five minutes, but I'm spending a little more time thinking about my IPP goals and making those requests at the meetings.
Chris
There was there was also another clarification. And I know we've talked about this, but it's like this fine line. Somebody said, would a doctor's letter recommending art, music, dance, equestrian therapy be sufficient to present to the regional center during an IPP, like, is that enough to say, or do they really need to get into the specifics? Not just like this could benefit. Do they need to get into the the why of each?
Well, I would say, first of all, doctors, letters, prescriptions, any of that kind of stuff can, can generally, generally, it's going to help. That said for non medical therapies. I'm not sure if a medical doctor's opinion will matter, but, I mean, I could think of some examples where it might hurt, but I think that's going to be very unusual, unique circumstances. For the most part, I'd say if you can get it, get it. Really, I think the the best places are going to be the evaluations and assessments that families do all the time with their children. And so you may even want to write your own report, write what you observe, collect data, get endorsements or observations from people in those community settings or whatever who can, maybe a provider who can speak to that issue as well, but anywhere you can get back up and substantially, where did that come from? Anytime you can get back up to to you know, put further belief in your position. I mean, it can't hurt, right?
Lindsay Crain
This is an interesting question. Parents are so savvy. They're always they're always thinking of all the ways that people can say, No, I don't know why. You know, we're all experts, but it says, What if the school districts start using this law to say they can't provide these educational services due to budget constraints. So maybe that I'm looking at this. Do you foresee that? Because what it says is, if school districts start using this law to say they can't provide these educational services due to budget constraints, do you think that school districts are going to see this and try to, like, punt it off to off to regional center. Is that something that you, that's how I that's how I'm interpreting this. So whoever wrote this in let us know.
Well before 2009 that's, I've seen a little bit of that. Hard to prove. You've gotta get intent and all that stuff. I can't prove intent. But a lot of people did. Did make it well look, a common statement made in IEPs, even to this day, even for the last 12 years, has been, why don't you go to regional center and ask them for that? That's been a very, that was a very common refrain that was reported to us before 2009 and it continued even after 2009 even to this day, we still get told that schools are, you know, telling people go back to the regional center for certain things. So based on that, I could say, yeah, yeah, they may. But if they do, again, one of the things that that the regional centers can do, and this is a bit off topic, but is they can pay for advocacy services. So the regional center can actually pay for a special ed attorney to represent a student. And so, you know, if it's a district that that regional center may be hearing this a lot from, and they keep getting these cases referred back to them, they might decide to hire a few special ed attorneys for a few folks to send a message. All right, I don't know about that, but they may assist people in getting the advocacy assistance they need from the school, and maybe the school then would as a result of being challenged with a special ed attorney representing the student, provide the service. And who knows, maybe that would send a message to the district. Maybe that isn't the intent, but maybe there'd be a message there. I don't know.
Lindsay Crain
Definitely I like, I like, the way you think, Chris, there's, there's one more question. I know we have a couple more, but this is with aides. What about a support person who follows the kid outside school hours to after school programs? Has anything changed with that? Because I know the regional center has sometimes, you know, provided an inclusion aide. So has anything changed with that?
Chris
Nothing's changed. Yeah.
Lindsay Crain
Great, perfect.
Jason Lehmbeck
And you mentioned earlier, somebody asked our question, the question, services consider social rec. And it's not necessarily that, it's that that's as of July 1, those types of services are now back on the table.
Yeah, social rec is actually been as I think it's actually, well, you know, how do you want to say it? Social rec is on the table. Let's just, let's just leave it at that. On the table. Done.
Jason Lehmbeck
Equestrian therapy is...?
Chris
Non medical therapy. Yeah.
Jason Lehmbeck
Yeah, it's in that framework. Got it.
Lindsay Crain
You know, we're starting to wrap up. So if you have any other last minute questions, please get them in the chat window. I guess Chris, I'd love to know, like, is there anything we can do to avoid losing these services again? You know, these last 12, you know, these last 12 years, what can we do so this is a standard part, continues to be, you know, part of regional center services.
Yeah, it's, it's a great question. I would say, get involved. What we did back in 2008 when the when the cuts were being proposed, was we had come up with a scheme of how DDS could save 10% of the budget and really nibble around the edges, not have a huge impact on any one group and just kind of nibble around the edges of the budget to get it down to where it needed to be. DDS chose a different strategy, because what we what we offered was a suggestion to make numerous changes across many different programs. Instead, DDS seem to have adopted the strategy of saying, we're going to make bigger changes to fewer programs. I'm only assuming that that's because it would be easier to train service coordinators and regional centers and all that kind of stuff. And so with the with all those changes being proposed, with all that stuff happening, what we did was we we reached out to the community and we said, Okay, we need numbers. You gotta go testify. This stuff is in front of the legislature, and otherwise we're going to be at their mercy. And we didn't have the critical mass needed. And so consequently, when, when Sacramento was having the hearings about all the proposed cuts and stuff, there wasn't enough opposition, and there weren't enough alternatives provided to them, where they moved off and did something different. So today, to avoid these kinds of things, it may not be possible to fend off cuts, because if we have a recession and we've got to make cuts, we've got to make cuts. But that said, if we're involved, and we have the numbers, we might have a greater voice in deciding where those cuts are made, rather than being told where they're where they're being made. So I think that that's really where it's at is, is to get involved with groups. Start if you don't already follow what's happening with the state budget every time in January, when it's proposed, what's going on in May revise. If you're not used to providing comments, do it. Start getting used to providing those comments, because you don't have to write books to your legislators to say, I think this is a good thing or a bad thing. It can literally be three sentences, Hi, I'm a constituent in your area. This is being proposed. It's awful. And here's the impact that it would have on my kiddo.
Jason Lehmbeck
Yeah, that's I think that we tend to forget that, and you get lost, and you think, Oh, it's you got a march on Sacramento every time. But to make those comments to be, you know, out there, sharing your thoughts, even in small ways, can make a big impact. One question that's come in and it looks like somebody answered, but just want to double confirm with you, is there an age limit on social rec and summer camp?
Chris
No, it's for both children and adults.
Lindsay Crain
Because there's a lot of people, yeah, saying that they they had understood it was just a 17 years
Children and adults can both participate.
Jason Lehmbeck
That's great to hear.
Lindsay Crain
I also had to do a shout out, because if you're nervous ever about like testifying. I heard, I heard that this guy, Chris Arroyo, has done some great trainings about testifying, like, in front of, like, the, you know, your legislators. And I've been to one of those trainings, and it was very good. So do you have anything like that coming up?
I don't have that coming up right now, but that How to Testify presentation is is going to be offered fairly frequently in the future, because ultimately, I think everybody sees the need for systemic changes and improvements to the systems that serve them. And so there we are.
Jason Lehmbeck
Love it. I, you know, we, we could talk to you for hours. There's so much to unpack here. And you, you as always, and everything that you do, you do a really good job of helping us all see the big picture and then breaking it down and figuring out, how can we, how can we turn that into action for our kids and, you know, and all the way through back up again to, how do we make sure this doesn't go away and actually becomes more person centered and helping our kids, you know, not only be in the community, but thrive in the community. So I just want to thank you so much for all that you do and for taking the time to give us guidance here today.
My pleasure. Totally. My pleasure.
Jason Lehmbeck
All right, everyone, thanks for stopping by for another Undivided Live. We hope you found a helpful tip or insight out of today's conversation. It's time to invade the classes and camps around Los Angeles. Let's get our kids out there. Have a wonderful weekend.
Lindsay Crain
Thanks, Chris, thanks everybody. Bye.
Chris
Pleasure. Thank you. Take care, everyone. Good luck. Bye.
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