New York Early Intervention in Crisis

In this urgent and eye-opening episode of the Fix SLP Podcast, Dr. Jeanette Benigas welcomes guests Jamie (Instagram: @straightupslp) and Lacey, two passionate advocates, and providers in New York’s Early Intervention (EI) system. Together, they expose critical failures in the state’s newly launched EI Hub platform—a case management and billing system riddled with technical issues, including non-functional billing, workflow disruptions, and alarming HIPAA and FERPA violations.

Key topics include:

• The devastating impact of the EI Hub's failure on providers and families, with providers unable to bill for services and facing financial insecurity.
• The severe privacy breaches, allowing access to sensitive information across state lines, violating federal laws, and undermining trust in the system.
• Grassroots efforts to raise awareness, including contacting state representatives, the Attorney General, and pursuing class action lawsuits.

Listeners will find resources and call to action at www.fixslp.com to join the fight for immediate change. Share this episode widely to support the providers and families who are directly affected by this crisis. Together, we can fix what’s broken.

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Creators & Guests

Host

Jeanette Benigas, PhD, SLP

Host of Fix SLP

What is Fix SLP?

Fix SLP is grassroots advocacy firm here to challenge the status quo in speech-language pathology by driving real change—from insurance regulations to removing barriers to full autonomy like the CCC. This podcast is your space to learn, engage and take action in the field of SLP. We don’t wait for change, we make it. So let’s fix SLP!
Hosted by Jeanette Benigas, PhD, SLP

Jeanette Benigas 0:00
Hey, fixers. I'm Dr Jeanette Benigas, the owner of fix SLP, a grassroots advocacy firm here to challenge the status quo in speech language pathology by driving real change from insurance regulations to removing barriers that prevent full autonomy like the CCC, this podcast is your space to learn, engage and take action in the field of speech language pathology. We don't wait for change. We make it so let's fix SLP!

Jeanette. Hey everybody, welcome back. This is Jeanette. This is what I refer to. I'm an 80s, 90s kid. This is a very special episode. If you remember sitcom, there was a very special episode every now and again, baby. There is violin music, I don't know, but that's what I feel like this episode is today. I have said previously that we are here to support all efforts. I even said, don't be offended if we need to do a little vetting, because we always want to make sure that what we're bringing you is quality legit has an actual plan before we start putting people's efforts out there. It doesn't mean that all efforts aren't valuable. It's just we could spend all day sharing people's stuff. So I heard a little while ago from an early intervention SLP in New York, before we start talking to her and another guest, I just want to preface this by saying two of us are speech pathologists. One of them is a special instructor. This episode is for any person in the state of New York who either provides or receives early intervention instruction. Please share this episode far and wide. It is applicable to everyone. For that reason, we won't be talking beach specific issues. We won't be talking classroom specific issues. This is a broader issue that needs to be addressed and needs to be addressed immediately. So we have Jamie and we have Lacey here today, who have been part of this movement to bring attention and action to the problem. And I'm going to let them do a lot of talking. We are going to try to keep this episode as short as possible, so you can listen in one sitting and then take action if appropriate for you. So hi ladies, thank you for reaching out. Thanks for coming on today. Why don't you just really quickly tell us your first name and a little bit about yourself, and then we can start moving into what the problem is.

Jamie 2:53
Cool. Thank you so much for giving us a place to speak. You know, for us, we've totally felt ignored, so having someone pay attention to us is, like so supremely important. So thank you. My name is Jamie. I am a private practice owner and early intervention agency owner in New York State. I've been working in early intervention for probably the better part of eight years, and it's something that I really, really love I totally see that this is a vital program, and right now, probably about 75% of my speech therapy caseload is early intervention kids under three. It's really my passion. Honestly, these kids are innocent in all of this, so I'm just happy that we have the platform to start advocating on their behalf, because it really affects them more than anyone.

Lacey 3:46
Thank you so much for having me today. My name is Lacey, and I am a special instructor in New York. I am an independent, independent provider, and I also conduct parent toddler groups in the area. And this is also my passion. I've been doing early intervention Since 2021 and prior to that, I was a preschool special education teacher for 13 years. My passion is the babies, getting them to socialize and interact and explore the world. And this has been one of the most rewarding things I've ever done, and it's because of the advocacy that I enjoy doing, which makes this job such a passionate one, but now I think that we need to turn the advocacy towards us as providers and so thank you for allowing us to utilize your platform to do that today.

Jeanette Benigas 4:33
Sure, so I will let them talk about the issue. But really, what it comes down to is there are issues with the software and billing platform in New York, and that issues is a it's much bigger than the word issues, I think, and what people don't know, or many people don't know, many providers don't know what. Is that for all of October, early intervention has not been making payments to the providers, which means, in about a month, you are not at risk, or you are at risk of potentially not being paid. How that trickles down to the recipients of these services is that if your provider is not being paid, you may no longer have a provider, because people should not be expected to work when they aren't getting paid to work. So I think that's the sum of it, but there are so many just jaw dropping details happening here? We're going to see if they can keep it, you know, concise, because we could talk about this for two hours, but I don't know. Where do we want to start?

Jamie 5:52
Let's do it. This is literally like, it's like a true crime podcast, like your listeners are getting a total bonus episode today, because this is juicy. So yeah, basically, the too long didn't read is that our third party billing software company responsible for the development of the EI hub in New York State, early intervention, their case management software platform, was in development for four years, some some even say five, and it is just so inoperable it that it has led to almost a complete standstill in workflow for the entire system. So this is our case, assignments, our billing, assigning multidisciplinary evaluations, assigning providers, changing demographic information. Billing is such a small part of it that, you know, billing doesn't work. Nothing works. You know, we're only focused on the billing, but really, none of it works. None of this platform is functional. They had five years to build it, and it's a complete failure. It's either dysfunctional at best or inaccessible at worst. The failure has really left providers unable to serve children in need. Not only are we not able to bill we're not able even able to assign ourselves to cases, our children disappear, you know, and we're, I'm going to get into it all. But it is, it is pretty wild. So the the real problem here is that the kids are at the center of it. The system being a failure is just a symptom. The The problem is that the EI program in New York State is an absolute free fall. It's an absolute crisis. The families do not know that their access to care is about to be interrupted. They don't know that this third party billing system, the platform that they built, is fraught with HIPAA violations, FERPA violations. They don't know that many providers cannot continue services due to non payment, and some agencies have already entirely stopped taking cases it

Jeanette Benigas 8:05
I'm going to interrupt you and say, case in point, we were having trouble getting this scheduled because you have a full caseload, except we are right now recording because you are not seeing your early intervention kids today because you are not being paid, and that's how we scheduled this at last minute.

Jamie 8:24
Lacey and I, both, both of us, we're I can't see I can't justify seeing these kids when I'm not being paid for it. And I know that sounds selfish, but I already haven't. I've already been working this entire month, thinking we were promised that the system was going to work when it launched on October 15, the very first day that it worked, the system crashed. It was so brutal. No one was able to get anything in. And it's not that the state doesn't have money to pay us. They have the money. It's that we cannot access it because we cannot bill. And in fact, we were told that this system was, I believe Lacey, I believe you. They said this at the meeting that you were at the policy meeting. This system was never built for the independent provider to do manual billing, and

Lacey 9:18
that it was more. It was more 837 billable friendly than it was for independent providers.

Jeanette Benigas 9:26
Okay, what is 837 friendly? Because we have a lot of people from all over the country listening, including parents and grandparents and family members who just have a baby, who get, yes, you know, service it. So what is that?

Jamie 9:41
So it's just like a bulk upload of all the cases and all the Billings primarily utilized by larger agencies, not really utilized by small, independent just your regular, everyday, friendly neighborhood speech therapist. You know large, multi million dollar agencies have the budget to support. Support these large batch kind of uploads, and it was just made very clear to us that this system was not meant for us to manually be inputting 50 visits a week. It's meant to handle hundreds, if not 1000s of visits a week, you know. So it was just the end. This is just one corner of the critical failure, because even the large agencies who do use these 837, loaders, they're called, they are reporting critical failures as well, over half of their claims have been rejected. Some as high as 70% of their claims have been rejected. I spoke with another smaller agency owner, who said all of her claims were rejected even on these big batch uploads. The real key here is that none of it works. None of it works. So so just the system itself, where we where we even start, is just crazy, because, you know, here we are. We start with the just overall workflow taking way longer than it should us not being able to bill the real problem that no one's talking about here is the HIPAA violations alone in this program are horrifying at best. So if you're a parent with a child an early intervention, let's say in Albany County, New York, which is a good couple 100 miles away from Suffolk County, New York, you would expect that your child's address, date of birth, phone number, your name, their name, everything about your child would not be visible to a provider in A county that maybe you've never even set foot in. However, under this new system, it has been reported by multiple providers that they are able to see caseloads that are not their own. So they can see kids from the opposite corner of the state, see what service they're getting, how often they get it, their phone number, their address, all of these, all of this information. This is a violation. It's a hip of It's glaring HIPAA violation. You cannot do that. There's no reason for that.

Jeanette Benigas 12:14
This really like a people versus the state issue, really, I mean, that's, that's what? Because Medicaid or not. I'm sorry, not Medicaid, because early intervention is run by your state health department in New York, correct? Yes, it is Department of Health. So that's what this is opening up is, and I wouldn't be surprised if five years from now, that's what was happening if a class action lawyer took this on. But this is a people versus the state issue for this happening and there being no immediate action to resolve it. That's That's how serious this is.

Jamie 12:53
This is immensely serious between HIPAA and FERPA violations, the providers we are screaming in the faces of the Bureau of early intervention, the Department of Health, the Attorney General. We've gone to everybody. We've had a delegation go to Albany, and we're like, hey, like, forget about we can't bill, you know, forget about that for now, of course, that's supremely important that we can't build. But this is the children and the families. Their information is exposed the every state system gets hacked. In New York State early intervention, we get phishing emails. And Lacey, I'm sure you can attest to this too, we get phishing emails people who you know, we get fake emails all the time. Our provider information is exposed. These kids information.

Jeanette Benigas 13:37
For anybody listening who doesn't understand what these abbreviations are, HIPAA is the health insurance portability and accountability act of 1996 and what that does is, you know, you're always signing these forms at your doctor's office. It protects the privacy and security of medical records and other health related information. So by law, if you're receiving a service such as occupational therapy, physical therapy, speech therapy, anything that falls under that health care umbrella. That's where HIPAA falls. FERPA is the Family Educational Rights and Privacy Act, and what that does is protect the privacy of the actual students, so your child birth to three, it protects their educational records, any grades, transcripts, discipline files. It really gives the student, you, the parent, the legal guardian, the right to review and request corrections to records as well. But by law, anything education related, anything health related has to be protected. And it doesn't matter if it's the state, a big company or a private provider, by law, we all have to protect those records, and so the only people who should be seeing those records are the people servicing your child. And to take it one step further. Other if someone on the team is providing a service and some other team interactions aren't even relevant to the service they're providing, technically, they shouldn't have access to those records either. You should only have access to the records that are relevant to the service you're providing. And so someone across the state, whether it be healthcare or education related, should not be able to see any of this information. Period, full stop. That's it.

Jamie 15:31
This is breaking the law. This is the law. These laws were put in place to protect families, to prevent protect children, to protect their educational records to protect even their diagnoses. I should not be able to log into this horrible system and see that a child living at 123, Main Street in Albany, New York, is diagnosed with autism. I should not be able to see that. And I can it's insane, and not only the the children, but the providers as well. There's, I have received so many screenshots, photographic evidence of this happening. This isn't just me claiming that this is happening. This is happening to multiple providers. Providers are also being given permissions within this ei hub system that they're able to go in and change other providers demographic information, change providers information and their permissions. You should not be able to do that. I, as a speech therapist, should not be able to log into the system, change Lacey's information and assign her to, you know, whatever case, when I don't have the permission, role or responsibility to do so, I should not be able to access any of these people's information. I shouldn't be able to see where Lacey lives. I shouldn't see her phone number, but you do it's it's really scary. So these breaches not only violate the federal privacy laws, but also undermine the trust, the blind trust that the families place in the EI system. Providers are fearing liability and privacy risks as we're forced to use the system that is jeopardizing sensitive data. So my question is, what happens when there is a HIPAA violation? Who's responsible the provider? I'm ultimately the one who's supposed to be keeping that information secure. I'm being forced to use a system that exploits it. So how is that right? If it was me, the individual provider, being uncovered with all these HIPAA violations, my license would be revoked. I'd probably be put in jail. But yet, this third party billing system is allowed to continue to receive hundreds of millions of dollars in state funding from New York State. It is absolutely insane. And this is all a matter of public record. We can all go in there and look and see exactly what dollar amount this third party company received to provide these products. The scary thing is, this company has done this before, multiple states, New Jersey, Maine, Pennsylvania, Mississippi, all of these states have had legal action taken against this third party billing company and the product that they were charged with delivering all of these companies. All these states either canceled their contracts at a loss of hundreds of 1000s, if not millions, of dollars, or, in New Jersey's case, the Office of the Inspector General recommended formally that New Jersey repay $300 million in fraudulent Medicaid claims that were specifically handled by this third party company. It is all public information. It's all there and all these links, so I would love it if you guys looked into this, because it is sick. It is so sweet.

Jeanette Benigas 18:44
We are going to have resources linked up on our website, www, dot fix, slp.com, it will probably be at the top of our homepage, in a colored bar that says something to the effect of early intervention. New York, source documentation and call to action or something like that. We are the ladies are preparing this information right now. I told them I am happy to link it up. So everybody who's interested has one place to go to look at everything there will be a call to action. So everything that they're planning that you will need will be there for you. So we're trying very hard not to say anything that hasn't been sourced. And so this is, this is where a lot of the facts that they're providing have come from.

Jamie 19:32
Oh yeah, it's, it's all public record. That's the good thing about state contracts. It is all matter of public record. So even when we went so far as to uncover specific individuals within the New York State Government who run these programs. We're not going to name names, but of course, it is all public information. We can find some pretty concerning information. I'm not going to mention the big C word corruption, but it. Is it? Is it? Is of the opinion of several of us that this goes a lot deeper than just, you know, these alleged issues with this third party billing company. It's all public record. We can see it all. And that's the thing. We have brought this to the state. We have gone to this their their committee meetings. Lacey was there in person, and they couldn't silence Lacey in person. But the rest of us, 194 of us, attended a recent meeting. It was on 1029, we met with the New York State Bureau of early intervention, their ei Coordinating Council and executive committee meeting, we were allowed to speak, so I'm grateful that they did give us the opportunity to speak, but we gave them so much proof of these situations that the DOH attorney Brett angle shut the meeting down when she recognized that our points were a little too valid for her, so she muted 194 participants microphones, or in other another way, instructed the powers that be at that meeting to mute 194 participants. But Lacey was there in person, and she was able to continue speaking. And Lacey, I saw in that meeting the way that they really just silenced you, and she asked poignant questions to them, and they totally ignored her. She's sitting right across the table from them, and they ignored her. So, you know, we're we're very, very concerned about what's going on here.

Jeanette Benigas 21:32
Lacey, do you want to give us an example of a question you asked that wasn't answered?

Lacey 21:37
A basic question that I had asked was I asked for some simple transparency, because when we want to communicate with the Department of Early Intervention, they always have us send everything to like a bulk email box, and then they sort of disseminate those emails out to who they deem they're appropriate for. And I told them that would be helpful, if they were able to give us their own individual emails so that if we had a problem with a certain thing, we could reach out to them. And they absolutely refused to do that, because they said, If you email three people at the same time, then three people would work on the same problem. And I kind of have had haphazardly said, well, then maybe something will get done about it. If three people are working on it. She didn't like that very much, but then it was very easy to figure out the format, to be able to communicate with them via email. But that was one simple thing, and another thing that we asked for was just a reinstatement of the steering committee that they instituted when this happened in a different platform transition where people didn't get paid for months on end, and they instituted this committee so that providers could be involved. So we asked about that, and they wouldn't respond to that question whether they would do that. We also asked them for the number of tickets that are currently unresolved sitting in the system, and they wouldn't give us that answer. We asked how long the tickets were sitting in the system, and then we also asked them to provide the number of build sessions that are just sitting, unable to be transferred over from one spot to another in order to build to state. And they were unable to provide any of that information, either or unwilling to provide any of that information.

Jamie 23:25
Crazy. It, it is insane. You know, the the, the other thing is they just, they're throwing band aids on this situation. They proudly, kind of came to us and said, Well, we're going to give you a one time special voucher. Aren't you so excited? We're going to give you a special voucher for some of the build visits. And, you know, blah, blah, blah, here it is. It's your interim solution, except nobody can get their build claims onto that voucher because of this ei hub system failure. It is so bad, it's like it's akin to running a program on Windows 95 it is so brutal that a third grader, in my opinion, could have developed a better system. The developers who worked on this should honestly be ashamed of themselves. It just doesn't work. It flat out, does not work. So they said that they're going to give us this special voucher. I didn't receive it. Nobody I know received it. We're all waiting on hundreds of claims. We are put in an impossible situation. Do we stop seeing the kids? Do we have to explain to the parents what's going on? Many are completely in the dark. Many don't know. And it's even worse with these large agencies who you know in New York City, there's, there's several agencies that are backed by multi million dollar like, you know, hedge fund operations. And people with a lot of money can start early intervention agencies and float them and do all these things. Their providers have no idea that none of their services have been billed for since the beginning of October. Um. Um, the beginning of the month. And, you know, there's been several other points. There's so much information this. This goes so deep that, you know, there's many who have uncovered some really scary things. Like, in fact, this third party billing system had the power to completely shut down our state mandated system for weeks, nothing was going in or out. And if you're going to give a private company that much access to power of 1000s, it's not millions of children and their information. The the power to shut down a state run program for weeks on end, only to have it launch and it to be completely non functional. What? What would have happened if that was a hospital or a school? There's many providers who report that records are gone, just gone, completely gone. The funny thing is, we all as providers get audited for maintaining accurate client records. All of our records are gone. We can't access them. They're gone. We just don't even, I don't even know where they are. They're just floating around in cyberspace, gone. And the the state and like our oversight committee, has the goal to audit people at this time, providers are being audited right now as we speak, their records are literally gone. I couldn't even tell you where they are. And you have the audacity at the state level, at the oversight level, when we're calling your oversight to the table, you have the audacity to call independent providers and agencies and everyone who's involved in the system. You have the audacity to call us to the table right now and prove that our records are intact, but the platform managing our records has completely mismanaged all this information. It's prescriptions gone. IFSP is gone, service authorizations gone. Everything is gone. We don't know where it is. It's very, very scary, especially because we're already seeing these massive violations, HIPAA and FERPA violations. Where has that information gone? It's it's very, very, very concerning this, this third party company that has developed the EI hub, has routinely reached out to providers and asked them to speak positively on their behalf, to praise this company publicly on social media, to try to spin the public perception away from their critical failures. So it's really it's I did not believe that until I myself received a call. You can't erase all of that, but you can target specific, loud individuals and ask them to spin the story and report favorably for your failure as a company. You know, I'm not going to say that we're working for free, because, you know, we will get paid, but we don't know when we're going to get paid. We can't even bill for these services. New York state also has this handy dandy 90 day rule, where you cannot bill for services after 90 days, we're already at 30 days, and none of us can bill. So we only have 60 days to get this up and running so that everybody can bill for this massive backlog on time before the claims just become null and void.

Jeanette Benigas 28:17
Yeah, super concerning, and I do think we can continue to talk about this for a while longer. Let me ask you some question. You know, very simply, what has been done so far? Has the health Yes or No? Has the health department been notified of this problem?

Jamie 28:36
Yes?

Jeanette Benigas 28:37
What has their response been?

Jamie 28:41
Blanket statements. Not much.

Jeanette Benigas 28:44
Okay, then. So, nothing. Nothing that you can see that any work is being done to fix this software or fix the problem.

Jamie 28:53
Nothing. In fact, the state says that we cannot one of our one of our main asks was, can we go back to the original system that worked as of 10, five, it worked completely fine. Nobody had any problems with billing. Can we go back to that system? And they said, Absolutely not. It's ei hub, okay. And we've also gone to the Attorney General, Letitia James. She has been made aware, and this issue is on her desk and from her offices communication, they are taking this somewhat seriously. We have all gone to early intervention bei some folks are contacting lawyers. We're trying to organize class action lawsuits. We are organizing at the provider level, because they are just not paying any attention to us. You You heard what we said. The attorney for the Department of Health cut the meeting because she didn't like what we had to say.

Jeanette Benigas 29:48
Yeah. So there's so much more to talk about, so much more to discuss. Obviously, the source documentation that you gave me was pages long. Yes, if people want. Find more information, collect it all in one place. I've already said we will have that link at fix slp.com, our call to action, or their call to action at this point is as a service provider or a recipient, a parent, legal guardian of a recipient of early intervention, to contact your state representative and or the attorney general, we will have all of the state representatives linked up at fix slp.com if you are a provider, you would be contacting the representatives in the place the county that you live in, and the counties that you work in, where you provide services. If you are a recipient, you will contact the person or people in the place where you live. So we will have, we will have some instructions there. We would love to manage this for you. You know, the ladies would like to manage this for you and help you figure that out, but we anticipate a big response to this, and because they have jobs and they are advocating more on that statewide level where we thought it best, we're just going to leave it up to everyone to take Our resources and sort of figure it out for themselves. If you are a provider and you want to get involved with advocacy, you can contact these ladies on Jamie's Instagram. Jamie, what's your Instagram?

Jamie 31:34
straightupSLP, on Instagram.

Jeanette Benigas 31:38
straightupSLP on Instagram, we will link that in the show notes. And I believe they are also going to be working on a very specific email for their movement. So if you are a provider, if you are someone who has more information or something useful to say, you will be able to contact them there. So everything you need will be at www.fixslp.com you can also follow us. We are fix.slp on Instagram or Fix SLP on Facebook. We will also be releasing one post with the information, the salient information that was discussed today that is applicable to service providers and families that can be shared throughout the state of New York. So when we put that up, I will put that up on our platform. We will collaborate with Jamie's platform, and then it it will be public, so it will be shareable in any social media platform, on Instagram or Facebook that you are a part of. And I think this is a true grassroots effort, where, if you share, and then someone else shares, and then someone else shares, and enough people get involved, and enough of you speak up, something will happen, and something will happen faster, is the hope that's usually how grassroots advocacy works, and hopefully enough of you will get involved and help to advocate that really it just forces the change that you all need to see, because this is a big deal, especially these HIPAA and FERPA violations, like Jamie said, they will eventually get paid. It would be helpful if New York went ahead and lifted that 90 day billing, you know, they know that there's a problem here, and so not providing a way to Bill and then saying, but you can't bill after 30 days, seems like yet another opportunity for a lawsuit. So that this is an opportunity for them to step up for the providers and the children of the state that they serve and really make it right. So ladies, thank you for your advocacy for our littlest members, littlest residents of New York, Birth to Three is early intervention there. These are kiddos that can't speak up for themselves. These providers, even though they love what they do, they can quit their job and find another job tomorrow and get paid. These kids, a two year old, cannot quit her life and go find another life tomorrow. Cannot quit her life and go find a provider. Tomorrow, she is relying. He is relying. Your child is relying on a system that is supposed to serve them to be working, and that's not what that's not happening, and it's being swept under the rug. So everyone needs to be aware. And you know, by the time this goes live, probably a week from now, hopefully some things have improved. So this could be a fluid situation where things are already getting better, and that would be great, but we aren't going to not release this on the assumption that that that is what is going to happen. So

Lacey 34:47
Because it seems like that's what's happening is they're like, oh, we'll band aid this up just a tiny bit to get you guys to stop. I was just looking on Facebook while we were talking just to see if there's any updates, and someone had said that they called the third party billing company for some help, because. Is they want to know where their escrow is, and they told them that we need to stop speaking negatively about them on social media.

Jamie 35:07
Wow.

Jeanette Benigas 35:09
Alright, we are so honored to help you guys get the word out. We hope that your efforts just take off and that this gets addressed as quickly as humanly possible. Please everyone. If you're listening, you are from New York, either, even if you're not a service provider or a family and you know people in New York, share this episode. Share the content that will be out tomorrow. Share, share, share, share, share. That is how movements begin. This is for anyone. Yes, this is fix SLP, but we are standing here helping everyone at the moment. We're just speech pathologist and an educator, Lacy, who has decided to take this one step further and use our voices for good. So with that, everybody, I'm going to say thanks for fixing it, and we'll see you next week.

Transcribed by https://otter.ai