STACY PHILLIPS: On-- Families First presentation on IFSPs and IEPs. We will introduce ourselves in just a moment, but a couple of things that I want to let you know. So, as I just mentioned, this session is being recorded, and it will later be uploaded to our Institute on Disabilities website. We will have it professionally captioned. Closed captioning is enabled, and if you need those, at the bottom of your screen, you should see a CC and can click Show Subtitles to have the captions appear.

If you're not comfortable being on camera while this is being recorded, you are welcome to turn your cameras off. That's fine by me. And just to let you know that Families First is brought to you by a Philadelphia Interagency Coordinating Council Activity and is funded by Philadelphia's Department of Behavioral Health and Intellectual disAbility Services, or DBHIBS, and Elwyn Early Learning Services.

We will have part 1 today, October 20th, part 2 will be on November 9th. So if you're interested in joining us again for this follow-up session November 9th, registration is also open.

So again, today, we are going to do an overview of, what is an IFSP and an IEP? And we hope that there are plenty of parents on this call that will benefit from this information. Malinda, do you want to talk about the Wordly that you have up here?

MALINDA KNIPFER: So when I think of students, when I think of people, same, treated equal, equality, it really gives me really, as a parent, of two children with IEPs, really does give me that empowerment. Because parents are collaborative within this process, and we're an integral part of the process, and we're a required team member under the legislation, so knowing that you're the same, they get treated the same, and we're equal. All means all, and those words, those powerful words, make me feel confident when I'm in meetings. And I'd hope that parents would feel that way too knowing that they are part of that team, and they are an integral piece of it.

STACY PHILLIPS: Yeah. I love that. So we're going to just take a minute to introduce ourselves. For those of you who don't know me, my name is Stacy Phillips. I am a project coordinator of family leadership and educational development here at the Institute on Disabilities at Temple University. In the middle there, there is a picture of my adorable son, named Beckett, and he is a child with a disability. He has emotional disabilities, anxiety, ADHD, speech impairment, so he's really fun. That's what all that means to me, that he's just fun.

On this slide, I love using images, instead of words, to describe myself because I know my life, I know my story. I have a background in sign language and deaf history, and then I did my undergrad here at Temple University in special and elementary ed with a minor in deaf ed, and my master's degree is in restorative practices in education.

Prior to coming here, to the Institute-- I've been here eight years, just about. Prior to working here, I was actually a school district of Philadelphia special ed teacher for about 10 years. And during the summers, just for fun, I worked Extended School Year, or ESY, at Pennsylvania School for the Deaf. I didn't want to lose my sign language skills so I thought that was a great way to keep my skills fresh.

I am also the co-chair of the Pennsylvania DeafBlind Advisory Committee, or PDBAC, which falls under PaTTAN, and that's been two years now that I've been doing that. So that's really exciting. We've gotten to work with PaTTAN and work with the Bureau of Special Education to support students who are deaf-blind. And, in addition to all that, I'm a C2P2 grad. In 2018, even though I was working here, I was able to attend as a parent. So yeah, that is kind of who I am, probably more information that you needed to know. Malinda, I'm going to turn it over to you to introduce yourself.

MALINDA KNIPFER: So I'm Malinda Knipfer, and I want to say, I'm very, very proud to have been asked to co-present with Stacy. I don't have the degrees of Stacy has, but I've done a lot of competency courses and continuing education credit courses, just a few of them are up there. I generally take a course once a month, sometimes I'm running three at the same time, both in specific disabilities and/or education and the legal side with the regulations.

So I'm, also, the-- I also did Competence and Confidence, so I'm a C2P2 grad, as well. I am a mom of two kids with disabilities, both of them have IEPs. But I've created my own company, Special Education Advocacy Services of Luzerne, I have a team of three now, because I was really concerned about the quality of information that we were getting, And it's not that the information wasn't there. It was, how do we access it?

And PaTTAN is just such a great resource for families, for educators, and I can't say enough about them. I do one of their courses, pretty much, six times a year, but I'm also the board member of SAFE. SAFE is Supporting Autism and Families Everywhere. We're an organization, a 501(c)(3), that provides integrated community experiences in a safe way for families with students that are on the-- kids that are on the autism spectrum.

Oftentimes, we go places and we're not always comfortable when our children are having a behavior. So SAFE provides those experiences that are for the whole family, extended family, as well. I've done master IEP coach, the learned from Seal House, which is an attorney group that did special education advocacy learning. And that's me. I've just, been around a while. I'm getting old.

STACY PHILLIPS: No, you're not. I think, I've got 10 years on you.

MALINDA KNIPFER: Not likely.

STACY PHILLIPS: But thank you all for being here, and thanks for allowing us to introduce ourselves. Before we really dive in, we do want to say that if you have a question or comment, please unmute, or use the Raise Hand feature at the bottom of your screen that says Reactions, or you can type them in the Chat if you're not comfortable being on camera or speaking. That's fine, too.

We are going to take turns monitoring that chat, so please feel free. We love to engage with families and anyone that's on the call. So thanks for being here.

MALINDA KNIPFER: And we will have breaks throughout where we're going to specifically ask for questions, if you need more understanding about an area that we've just spoken about, but please jump in at any time because we do want to have this as a fluid conversational engagement.

STACY PHILLIPS: Absolutely. Thank you for reminding me of that. So I love this image that's on this screen. These Wordies, I don't know, they get me. I really like them.

So we would like to know from you. When you think of the words IEP or IFSP, or Individualized Education Plan or Individual Family and Services Plan, what things come to your mind? Or, in looking at this image, what words stand out for you?

I know, for myself, student, planning, and needs are three that are obviously, and they're large on the screen for a reason, they are some that stand out for me. As a former special education teacher, I've written a lot of IEPs in my time, and really thinking about my students' needs was so important to me. I'm one of those people that I like to work backwards like, well, what's the end result? What do we want to gain? And then, that's how I plan. I go backwards.

So I would love to hear from you. Thank you. Kerry said, appropriate. Absolutely, appropriate goals, appropriate objectives for that child or individual. Lori said, team. So important to be collaborative, for sure. It's definitely a team effort. Individualization and needs, thank you Tawanda. Malinda, how about you? What words really stand out for you?

MALINDA KNIPFER: So being a parent of a child with special needs, the student really jumps out of me. I want teachers, the collaboration piece is important, individualized, community. Those are the things that really jump out at me because if we're not out in the community as well and we're all doing it in self-contained areas, where do we go from there? So those speak to me, particularly because my son is now transition-age for looking at independent living and some crazy stuff, job skills, happening. And it's like, oh, teenagers.

STACY PHILLIPS: Yeah, scary. Right?

MALINDA KNIPFER: It is, because the parents that are on for this, you guys are really just starting this journey. You get a diagnosis, and it can be fearful. Where do we go next? Where do we get services? And post-COVID, trying to get those services lined up can be extremely hard and frustrating for families. But I want families to also know that these align because everything that you do is impactful with your children.

STACY PHILLIPS: Wow, that's a really good point. We got another one in the chats that said, individual and unique. Yeah, unique like, all of our kids are just so unique. If you've met a person or a child with a disability, you've met one person or child with a disability because they're all so different, and everyone has their own personalities and behaviors and triggers and things that they enjoy.

I think about that all the time. Like, at IEP meetings, I make my son-- I not make him, but I invite him now to participate in his own IEP meetings. And I sit him down, and I say, tell them what you're interested in, tell them what you like, tell them what you don't like, tell them what really is difficult for you. Because I feel like it's so important for them to hear it from him. Now that he's 11 years old, he's able to sit in that room and feel like he's the most important person in that room.

MALINDA KNIPFER: Colleen, did you want to unmute and just talk about that a little bit, if you have some experience? So Colleen just completely agrees with you, where transitioning to adulthood is crucial.

COLLEEN: Well, I've been on both sides of planning, in regards to IEP versus ISP, which is what I do now. I work with adults who receive services. And I have had experiences where they're transitioning out of the educational component into adulthood and it is very stressful on the families trying to make sure that their continued success is there. So that part of the team, with the educational component, is so important.

MALINDA KNIPFER: Couldn't agree with you more, Colleen. And I think that this is where parents, when they're getting this information this early on, they're going to be prepared for that. Disability is natural. Every single one of us is going to become disabled at some point in our lives, and knowing that that transition, and we're going to talk a little bit more about transitions and what they mean a little bit later in the slides, but understanding that we're going to have transitions and being prepared for them, I think, is really crucial for families, too.

STACY PHILLIPS: Yeah. Thank you all for participating and engaging with us. We really appreciate the feedback.

So we're going to talk about what's on the agenda for today, our session outcomes. So we are going to overview the-- give an overview of the components of an Individualized Family Support Plan, or IFSP, and an Individualized Education Plan, IEP. And we love our acronyms so much, but any time we use an acronym, we will do our best to define it, first. If we miss one, please call us out on it. Please, raise a hand or say, hey, what does that mean? And we're happy to elaborate.

We will also look at the differences and similarities between these two, and why the IFSP is important in early intervention. We will examine the two general purposes of an IFSP and talk about, how are these documents developed? So if you've been through this process, you might know some of this already. It might be a little review for you. And if you're new to this process, we hope that you gain a better understanding throughout our time together.

MALINDA KNIPFER: So there's always boring legal stuff. At every meeting that you get, you end up with your procedural safeguards notice for parents, and it can be a lot and overwhelming. So we're going to just break this down a little bit.

So from birth to three, under the federal legislation, is what we call Part C. That is where the Individualized Family Support Plan regulations come from. The IEP, or Individualized Education Plan, is going to come out of Part B, and they are regulated through the Individuals with Disabilities Education Improvement Act, or IDEA, 2004. You're going to hear that throughout your whole child's school career, IDEA 2004. We have that 2004 because that was when it was last reauthorized. We're probably going to get a new reauthorization with new administration, but we'll just wait and see.

So Part C is specifically for children from birth through three. In Pennsylvania, the department responsible is OCDAL, or the Office of Child Development and Early Learning. This is a collaboration between the Department of Education in Pennsylvania and the Pennsylvania Department of Human Services, and that is to provide the services in the home, community, and areas where children without disabilities are, and it's also for the families. Whereas, with Part B, it's more individualized towards the student needs academically and developmentally.

So we're looking at Part B, three through five is still covered under OCDAL as a continuity of services, and that's going to be in conjunction with your Intermediate Units, or IUs as you hear us going along, school districts might be involved at this period, but only usually if it's got a service in the actual school, child care providers, early intervention, and Head Start programs. And that is really to provide the high-quality early childhood programs and effective family support programs. In Pennsylvania, specifically under Part B, the school district's transition services and supports usually don't happen until you transfer over into a district one until kindergarten and then that will be, the district will take that over until they age out or graduate. Aging out is what we call at age 21. So that's the little bit of legal stuff for you to understand the Part B, Part C.

STACY PHILLIPS: The legalese, we call it. Right?

MALINDA KNIPFER: That's right. So the IFSP, Individualized Family Support Plan, is a plan or a roadmap for early intervention supports and services. And it's provided, as we said, to the eligible child and the child's family. And we want that to be in the community, that's going to be in the home, service provider locations, and looking at those areas.

STACY PHILLIPS: And then, an Individualized Education Plan, or IEP, is written. Again, it's like a roadmap, but this is for provision of services for the education of students who are disabled or gifted. And the district has the responsibility, under Child Find, for children thought to be eligible for special education services to provide those accommodations. This responsibility also includes locating, identifying, and evaluating all students with suspected disabilities.

And unlike the IFSP, which a lot of those services are delivered in the home or community, the IEP really is focused on their educational plans so thinking just school setting. We know that obviously, a child's home life and community and that depth and breadth of their network and their community impacts their learning as well, but the IEP really is focused on education and that planning. Anything to add?

MALINDA KNIPFER: No. I think that you covered all of that there, Stacy.

STACY PHILLIPS: All right. So we wanted to talk a little bit about Pennsylvania specifics. Obviously, the Institute on Disabilities, we are based in Pennsylvania, and we provide services to individuals in Pennsylvania. And we thought it was important to note that every state has different Bureau of Special Education and Bureau of Ed, and they have to report things differently. So in Pennsylvania specifically, the school district is not responsible for the IEP until the child is of kindergarten age and not less than 60 days prior to a child being of kindergarten age, which here in Pennsylvania is the age of five. The Early Intervention Program and the district will schedule a meeting to discuss that transition.

MALINDA KNIPFER: So yes, they'll have a meeting with the IU, possibly service providers, and they will determine through either reevaluation or pulling from the IEP from that three to five and pulling those supports into what is needed within the school environment.

STACY PHILLIPS: Just out of curiosity, is there anyone with us today who does not live in the state of Pennsylvania? Just curious. If so, you could drop your state in the chat. And if you need additional services or supports, I am happy to send you links for other areas.

Malinda does do some work outside of-- oh, wow, California, hello. That's exciting. Malinda does do some work in our neighboring states. So California, Carla. Carla, if you need some additional supports, here at the Institute on Disabilities, we're a part of a larger organization called UCEDD, or University Center for Excellence in Developmental Disabilities, and there are 67 of them across the country. And they're all based on college campuses similar to we are. We are housed at Temple University, but there are other centers similar to us, Institute on Disabilities, in every state. And if you would like, I am happy to email you. I think, I have your email from the registration, but I'm going to write your name down really quickly, and I am happy to forward some information for you as a resource, if that's something that you feel like you need.

MALINDA KNIPFER: And Carla, I also have a network in California right along the seaboard. So if you do need any other resources, you're welcome to contact me. And Colleen, I actually do services in Virginia. So any information, you can contact me, and I can get that to you.

STACY PHILLIPS: Yes. We should have said that. At the end of the presentation, we will have our contact information, including phone number and emails. And Colleen, I'll also include, or Malinda can include, the Institute on Disabilities office in Virginia, as well. I'll make sure I get you that. You're welcome. That's why we love collaboration. That's why we love to hear from you guys.

MALINDA KNIPFER: So one of the purposes of Early Intervention, or EI, is the design to lessen the effects of a disability or delay in children from birth to three. And those developmental areas, there are five of them, and that's physical development, cognitive development, communication, social and/or emotional development, and adaptive development. And many kids can fall into all five, many kids might only fall into one, but it's looking at those developmental areas to give them that even playing field for when they do go in with their non-disabled peers that they are able to be integrated.

STACY PHILLIPS: So Early Intervention, or EI, services, so keep in mind that any time there are accommodations being made, it's not just the therapist or, excuse me, it's not just those goals and objectives, but there's services attached to all of them. So this is not an exhaustive list, we should mention. So EI services are designed to meet the developmental needs of an infant or toddler with a disability or developmental delay and needs of the family to assist in the child's development. That is key when it comes to early intervention, is that they're not just trying to help your child. They're supporting the family. What is it that you need to support your child? And that that's a huge difference between an IFSP and an IEP.

So some of the services that can be included are assistive technology and again, AT, or Assistive Technology, is not just a device. It's not just let me give this kid an iPad, and they'll use it for communication. It's the devices and the services that accompany those devices. Some of those services are listed here.

An audiologist, or audiology, if your child has a hearing loss, family training, counseling, and home visits, which is crucial, nutrition services to support feeding needs, a lot of children have a lot of challenges with eating-- my mine included. He eats like, five things, and he's skinny as heck-- then we also have occupational physical or speech therapy. So when you're thinking of those categories, think about the assistive technology. These individuals are probably going to be your experts in the AT field, which is also part of my background and things that I do here at the Institute, but working with a speech therapist, for example, if there's a communication need. These are the services that are attached to the goals.

Sign language services if you have a child who is deaf or hard-of-hearing, getting a sign language teacher on board to support the family and the child; social work, transportation, and the related costs of that transportation, especially if you have a child with multiple disabilities, physical disabilities and they need some sort of specialized transportation, accessible van for example, those can be very costly so this would be incorporated in that; and nursing services, but again this is not an exhaustive list. I could go on and on.

Any questions about that? I don't see any in the chat, but if you have one, I'm happy to go back. I have to remind myself not to move too quickly. That's why we allowed two hours for today. We want to make sure that you're getting any questions that you have answered. All right. Malinda, go ahead.

MALINDA KNIPFER: So the main three things-- you absolutely will, Lori, get a copy of the slides. So the main three things between the IFSP and the IEP that are always going to be the same is that it's developed by a team, you're part of that team, and there's usually evaluation or assessment for that going from IFSP to IEP. There is no cost to the parents or the families, including any of those items that-- that were talked about in the last slide by Stacy, and both are regulated by federal and state law. So states can enhance the federal regs, but they can't take away from them.

The IFSP is obviously, where we talked about zero to three, whereas the IEP is going to be that three to five age. Again, we talked about this a little bit earlier, the services are delivered in the least restrictive environment, which we are going to look at later. The least restrictive environment in the school-based whereas, the IFSP is still least restrictive, but its appropriate services that going to be in the natural environment for the child and family. That could be libraries, that could be at the store, wherever those supports are needed for the development of that child and supports to the family.

I think, that they're a little bit different, whereas the IEP is really providing special education and related services. So those services that are available under an IFSP could definitely still be provided under an IEP if they're needed. Do you have anything further to add, Stacy, to that?

STACY PHILLIPS: I don't. I was trying to think if you covered it all, but I think you did. It can get a little confusing. There's so many acronyms. There's definitely a lot of overlap, hence the graphic on this screen. There's going to be overlap even further when you talk about ISPs, and maybe further down the road, you and I will work on that presentation, as well. There's so many transitions in taking the child across the lifespan in the system and making sure that they are supported.

MALINDA KNIPFER: So again, with eligibility, we have criteria that must be met. Within the birth to three system for IFSPs, there is either a 25% delay in one or more areas of development, the five areas that we talked about earlier-- the cognitive, adaptive, et cetera-- or a specialist determination that there is a delay, even though it hasn't shown up on assessment, that could be in the form of a doctor has written a prescription, per se, or a plan for supports for the family, or there has to be a known physical or mental condition that has a high probability for developmental delays.

STACY PHILLIPS: I love the way you say, known, by the way. I've known Malinda for quite a few years, and-- obviously-- I love the way you say that word.

MALINDA KNIPFER: I'm just a tourist.

STACY PHILLIPS: A tourist, who's lived here a very long time. So talking about eligibility now, for young children, toddlers who are ages three to five, same thing, a 25% delay in one or more of the areas of development or any of the following. So that is an autism diagnosis, visual impairment, including blindness, hearing impairments, deafness-- and there is a pretty distinct difference between those two-- having an intellectual or developmental disability, traumatic brain injury, orthopedic impairments, eye or other health impairment-- love that one OHI. They're like, well, we're not really sure how to categorize it. We're just going to say OHI-- emotional disturbance-- that's my kid-- specific learning disability, speech or language, deafblindness, multiple disabilities, the list goes on and on, and, not or, and they're in need of special education and related services. So that's what makes them eligible, that's the eligibility criteria.

MALINDA KNIPFER: So we want to just jump into this a little bit more. So children can make up that 25% delay when they've received those early intervention services. And parents might feel, oh, well, then they're not going to qualify for an IEP or services going into the school age, but in that second block, where you've got any of the following, your child could still be eligible because that's the 13 eligibility criteria. One of them that isn't on there, because it gets cut out at eight depending on state regs for wherever people are living, is developmental delay, so we've already got that piece that's in that Part B for the federal regs for eligibility. So when you go into an IEP, the eligibility criteria may change, but don't get concerned about that.

STACY PHILLIPS: Yeah, that's a really good point. I'm sorry. I scrolled past that by accident. OK. We're going to take a breath.

Before we dive a little bit further into the IFSP, we wanted to pause here for questions. So does anyone want to unmute? Do you have questions that you want to ask? Do you want--

MALINDA KNIPFER: Or an experience?

STACY PHILLIPS: Yeah, if you'd like to--

MALINDA KNIPFER: --might have had in the system.

STACY PHILLIPS: Yeah. If you've already kind of gone through this process, transitioning from an IFSP to your child having an IEP or you're going through this process right now and you have questions or things that you want to share, we would love to hear from you at this time. And we will give you a moment to think about that. Don't be shy.

MALINDA KNIPFER: And you don't have to take your camera off to ask a question. I know, for myself, it's easier for me to speak than type. So usually, when I'm in sessions like this, I will always be the one that ends up taking the mic off. So we have-- so we have a question. So they said her daughter was not qualified so they put her on a 504 plan, instead. So she's now in seventh grade.

So that's a really good thing because we talk about those special education needs and a 504 plan, Stacy, if you don't mind me jumping in, is actually regulated under the Americans with Disabilities Act for accessible accommodations, reasonable accommodations. Not every student who has a disability need--

AMY: Let's dive into the IFSP and IEPs--

STACY PHILLIPS: Hi, can you mute yourself, whoever--

MALINDA KNIPFER: That was Amy.

STACY PHILLIPS: OK, OK. Thank you. That's OK.

MALINDA KNIPFER: So developmental delay cuts off at age eight. So even though she may still have a developmental delay in regards to eligibility for an IEP, that's not one of the criteria that happens after that age. You may want to have her re-evaluated comprehensively to determine if there is any learning loss or deficit within her grade level abilities that she may need to be on an IEP, again.

STACY PHILLIPS: Does that kind of help? And you're welcome to unmute and give us more information, or ask another question if you'd like, or you can type it out. Is this through her doctor or school?

MALINDA KNIPFER: So I would have the school reevaluate for the educational piece of that. They can also-- and what you want to do is you want to ask them to evaluate in all areas of suspected disability. I get that we have a lot of beds out here too because I'm in the middle of nowhere, farmland Pennsylvania-- love it, but it's isolating-- so you want to ask for a comprehensive reevaluation, or evaluation at this point because she's on a 504, evaluation for special education and related services.

STACY PHILLIPS: I also want to add that any time you make a request from the school, you need to put that in writing. There are very specific timelines affiliated with-- what's the word I'm looking for-- adhering to that request-- I don't know-- honoring that request. So any time that you have a request like, asking for your child to be re-evaluated, you want to put that in writing. And I would email that to the principal, the special education team, whoever attends your child's IEP meeting or 504 Plan. They still have team meetings. I would absolutely email that request in writing to everyone.

MALINDA KNIPFER: And when you're asking for that, their obligation still is Child Find. So they've found that your child is a child with a disability because they've given her the 504, but they still have Child Find isn't impacting her educationally. And even if she's passing from grade to grade with good grades, they still have an obligation to determine, does she need those specially-designed instruction? Because that's the difference. It's, does she need that curriculum modified and/or what accommodations and/or services does she need? So Kerry's got her hand up. Please.

STACY PHILLIPS: Go ahead.

KERRY CONLEY: Hi, there. I am a mom. I have two children with IEPs, one actually graduated-- thank God-- and the other one is in ninth grade. I'm also a CASA, which is a Court-Appointed Special Advocate for adjudicated children in the legal system. So right now, I'm currently struggling with getting the team to contact the school to have this child tested for, whether it be learning disabilities or what have you. So I do know about putting it in writing, they have the 60 days, I've been through this a lot of times, but is there something specific that we could put in the letter, or is it just checking for learning disabilities or delays?

[INTERPOSING VOICES]

MALINDA KNIPFER: Yeah, I'll grab this one because I have to deal with this every day. What you want to be specifically asking for is that under their obligation for Child Find, that they--

KERRY CONLEY: OK.

MALINDA KNIPFER: --evaluate the child in all areas of suspected disability. And then, you can list down the areas that you suspect, but put "including, but not limited to" because it's their responsibility to identify those.

KERRY CONLEY: OK

STACY PHILLIPS: I was going to say, sometimes it's better to not be so specific. You want them to really be looking for anything that could be going on. And if you specifically say, can you test them for dyslexia, then that's all they're going to look for. You don't want to do that to yourself. You don't want to pigeonhole yourself. So yeah, make sure that you include language similar to that.

I would also make sure that you kind of put a date in there like, I expect to hear back from you within the next week on what the school's planning to do, and I know that you have 60 days to comply with my request, or something like that.

MALINDA KNIPFER: The school district, when you request an evaluation, the school district can turn around and say, well, we don't believe that the child needs that, they are passing from grade to grade, they're not having behavioral issues, but they have to put that in writing because you have to have a method of being able to disagree and take it either to a state complaint or request mediation. So you should still get, in PA, it's a NOREP/PWN, every other state's just prior notice, but a NOREP/PWN on your request because prior written notice also requires cogent reasonings for denial of a parent request. So you want to make sure that you get that. And if you--

KERRY CONLEY: And then--

MALINDA KNIPFER: --you do it yourself, say, I got a phone call from XYZ saying that they're denying the evaluation. I am putting this in writing that this is now prior written notice. I don't have cogent reasonings why I'm going to have to file for mediation.

KERRY CONLEY: OK And then, can you tell me again, I have a pen now, I should write down PA Find, is that what you said?

MALINDA KNIPFER: No. Why don't you give-- our details are at the end. So why don't you give me a call, and I can actually specifically tell you the language, If that's OK.

KERRY CONLEY: Absolutely. That would be great because my CASA kiddos, I have four in my case going from one year to seven, all children have suffered drug and alcohol in utero abuse, I guess you could call it or, you know I'm saying, and they all have their own, I mean, they all have their own disabilities and challenges that they're facing, but my littlest one is in EI. I just got notice that they want to cancel-- they're going to discharge in 30 days, but I don't know, like I said, I don't really know much information about that. But that's concerning because, like I said, she was fetal alcohol and tested positive for benzos when she was born, so she's got a lot of stuff going on, and she's not even two years old, yet.

MALINDA KNIPFER: And just remember, if a doctor says that even if found under assessment, that these things aren't-- these delays of 25% delay isn't showing, doesn't mean that they can just exit her out. OK? So this actually brings up our next slide, if you want to jump into that, Stacy--

STACY PHILLIPS: Sure.

MALINDA KNIPFER: --because if you think about it, this is about referral, and CASA is an absolute agency that should be making referrals if needed.

STACY PHILLIPS: Yeah, for sure Thank you, Kerry. We appreciate your--

KERRY CONLEY: Oh, yeah. You're welcome.

STACY PHILLIPS: --your questions and your input. And for sure, Malinda will connect with you. And I love--

MALINDA KNIPFER: And/or Stacy.

STACY PHILLIPS: Yeah, I love helping families do this. I like, literally type out the letter as if I'm the parent, and then I forward it. I'm like, here you go, copy and paste.

KERRY CONLEY: I just have one other question. In case I can't stay for the entire Zoom--

STACY PHILLIPS: I will drop our emails in the chat right now.

KERRY CONLEY: OK, but where will I fin, like, you're recording it, will you be replaying it, or will it be accessible to watch, or no?

STACY PHILLIPS: Yes. So we are recording it today, and then we will have it professionally captioned, and then it will live on the Institute on Disabilities website, and you would just Google Families First Institute on Disabilities. And we have three other recorded sessions that we did last year that are there, and they are free to watch any time. We will have session two on November 9th of this presentation, we're going to do part 1/part 2, and then anybody that registered for this webinar will be sent our PowerPoint slides after the presentation.

KERRY CONLEY: Excellent. Thank you so much.

STACY PHILLIPS: Of course.

KERRY CONLEY: It can be very scary as a parent to go through and not know what you're doing. I'm also, on my parent's side, I did have to hire an attorney two times to fight the district on the illegal things that the district did to my son. So I know it's challenging, but not having any information is very scary. So I'm very glad that I was able to find this.

MALINDA KNIPFER: So let me just, for any parent because a lot of people are new to this, the district doesn't do anything illegal. Let me just tell you because there's no charges that can be brought up against this school. They can't-- it's more what we would call a violation of the regulation.

KERRY CONLEY: Sorry, I used the wrong word.

MALINDA KNIPFER: No, no, that's all right. I just want to make sure that everybody understands like, it's not-- there's no civil or criminal action that can be taken. So when we talk about the language used, we also want to make sure because we want to be collaborative at all times. So even if they did do something they shouldn't have done, what we want to do is we want to always try, because it causes trauma for parents-- let me just tell you that right now. I've been down through that, Stacy's been down through that-- but when we-- and there are times that attorneys have to be involved to say that they don't have to be, but we always want to try to go down that collaborative piece. And I think when we start talking in terms that they have broken the law or that they have done something illegal, it makes it again that there's something criminal that's going on.

A lot of times, this is not a malicious thing, and we need to remember that people can make mistakes. We're all human. And I-- don't get me wrong because I'm on that other side of the table, with the parents, but I think that when we always work as a collaborative team, it's always to the benefit of the child. Because when we're at odds and we're bringing that to the table, we're now no longer concentrating on the child. So I don't want anybody to think like, I'm saying anything bad towards you, Kerry. I just wanted to do that as a global thing like, let's try and always work as a team.

STACY PHILLIPS: Yeah, I agree. And as a former special education teacher and an advocate, the collaboration is key. And everything just moves along so much smoother when everybody can communicate and work together to benefit the child. And it's-- yeah, go ahead. I'm going to let you-- turn it over to you.

MALINDA KNIPFER: So making referrals. Kerry, you're in a really good position to be able to make those referrals on behalf of those kids that you've got with CASA. Anybody can make a referral. It can be a parent, guardian, caregiver. It could be a child care provider.

One of the ones that we didn't put on here is a surrogate. So districts have the right to be able to appoint a surrogate that is not connected to any state agency if the parent or guardian is not available to be able to be in the child's meetings and things like that. So if we have a parent who's incarcerated, they still have a right to be there, but the school can appoint a surrogate. It can't be governmental, so it can't be a children and youth agency representative. It can't be a school district representative. It has to be totally separate from anything that's governmental, state or federal.

So child care providers can make referrals. So if your child's in a pre-K situation or an early learning situation for child care and your child's not rolling over when they should, they could turn around and say, I think that your child might need have an early intervention evaluation or screening, that could come from your doctors or nurses. A lot of the developmental areas that-- they're the ones that see it first, as to whether or not they're meeting those milestones. They are the ones that can be reaching out to you or directly to the service providers for EI, and say, I think this child needs to be evaluated.

Therapists, it could be a speech, occupational, physical therapist, that sees your child privately. It could be an agency representative to make that referral, such as Kerry. Kerry, with CASA, you're an agency representative at that point for those children. Anyone with concerns for the child's development and well-being can make a referral for early intervention services. So when you're out, and you're in the playground, and you're seeing something that you-- network with the families and say, hey, I've got my child in early intervention, or is your child in early intervention? Get your network together because it can be very isolating as a parent, but also, you want to make sure that these referrals are done. And if other people aren't doing it, you certainly can. Don't feel like you can't.

STACY PHILLIPS: Yeah. It can be isolating, and having that sense of community and looking out for one another is how we grow, and how we expand in kind of that ripple effect. So you're connecting with people in your immediate circle and then it kind of spans out, and that's also just a plug for C2P2-- Competence and Confidence Partners in Policy Making. We are accepting applications, and we'll have a new cohort in January. We really aim to connect with families, and then have them go out and become advocates for their children with disabilities, but not just their children, other people with disabilities and the disability community at large. So if you want to learn more about that, I will be glad to send you information at the end of this presentation.

All right, moving right along. So what other expectations are there? So screening and/or evaluations are also part of this process of identifying a child with early intervention needs. So the first interaction with early intervention may include a screening for your child, and these screenings are informal, they are usually quick, and usually occur just via conversation meaning, like, no in-depth questionnaires. As your child gets older, you have to complete 90 questions about their behavior.

You can also request an evaluation at any point during this screening process, so screening and evaluation are two different things, but at any point during that, you can request an evaluation. That evaluation can only happen with your consent. So conversely, the slide before, we talked about Child Find and talked about just identifying a young child with needs, anyone could do it, if you see something, say something kind of a thing, but an evaluation is not the same thing. So in order to have your child evaluated, you have to consent to that.

And remember that you are the child-- you're the expert on your child. You know your child better than anybody else. Despite all the medical professionals, people with teaching degrees, people with PhDs, it doesn't matter, that's your child and spend the most time with them. So you, being the expert, you should always be part of that decision making process and be involved in those meetings because you know better.

So the evaluation will look at all areas of your child's development. It's not just, focused on their needs and strengths, but what your child and the family needs to support them. That's all part of that evaluation. Anything to add, Malinda?

MALINDA KNIPFER: No. I think that the only thing that we can't stress enough is that you are critical to this, really critical. And you being able to be knowledgeable and be able to be successful with your advocacy for your child right from the get go is really going to help.

STACY PHILLIPS: Yeah. All right. I hope everybody is doing well and hanging in there with us. We are halfway through, and we're going to talk about other expectations. So we talked about the evaluation, and now we're going to talk about who's there? Who comes to these meetings, evaluations, and screenings?

So if your child is found to be eligible, there will be a meeting to plan the IFSP. And we say that, to plan the IFSP, because you have to remember that it should not already be written and just walk in and sign it. It's a planning meeting meaning, you have input and should definitely be questioning anything that doesn't seem appropriate to you. You should try to be there because you are an equal team member.

The team must include the service coordinator and at least one other person who was involved in doing the evaluation. So that could be additional team members, could be a child care provider, a doctor or nurse, a therapist-- we talked about speech, PT, and OT earlier-- it could be a personal care attendant or a direct support professional-- DSP, you might also hear that sometimes-- it could be an early Head Start teacher or a preschool teacher, an advocate, and others.

So who comes to the meeting depends on what your child and your family needs, and who you want to attend. If you want your best friend there to support you, then they should be there. If you want to bring an advocate for whatever reason, you are welcome to do that. But keep in mind that you are an integral part of that team so you should have your say and your needs met.

Not all agencies need to be represented at every meeting, I should also mention that. Some of them might only come to the first or come at a later time to attend, but not every meeting. And Malinda put a note in the chat. You can also ask for a draft of the document in advance. I know with IEP meetings, that's kind of the norm. We usually get a draft before the meeting. I never went through the IFSP process with my son. We actually didn't know that he had any disabilities until he was four years old.

MALINDA KNIPFER: And going through that process for me, Stacy, was, and I didn't know all of this at that time so it was really quite different for me looking back, because I didn't know that I could ask for a draft. And meetings and they'd just put the document in front of me and just read to me. And I didn't, also, know that even if a team member isn't there at the meeting, written input if they're a service provider is required on the update of your child. So they don't have to be there, but there should always still be some kind of information provided by that area that is servicing your child.

STACY PHILLIPS: Yeah, for sure. Sorry. I guess, I should go to the next slide. I have a lot of moving parts here today. My apologies.

OK. So components of the IEP, so the IEP is designed to document your child's academic and functional abilities and design an appropriate plan that is age appropriate, developmentally appropriate, and it still requires the same components of the IFSP in Pennsylvania. So the-- am I on the right screen?

MALINDA KNIPFER: You are on the right screen.

STACY PHILLIPS: Just checking, sorry. So the first is statement of development. So that is going to review where your child is at developmentally, and it will probably contain a lot of the medical jargon and official jargon. And then, the family priorities and concerns, so your input, and any interviews that were done with you, that information would be included. Community resources, do you want to talk a little bit about that, Malinda? What's involved in community resources? Can you remind me?

MALINDA KNIPFER: So any access that you might need to be able to have the community resources, that could be community nursing, that could be being able to be connected to a speech and language pathologist, that's all part of the community resources. If your child is only two, but you need to be able to have your child in some kind of care program in order for you to be able to work, all of those things are part of community resources, anything that you need to access as a family.

So if you needed parent training or parenting classes, you can [AUDIO OUT] that. There's no shame in the game. We're going to ask for anything. You can always be told no, but that's the worst thing they can say, is to say no, that you don't need it.

If you need access to community food banks, if you need-- all of that stuff falls under that. So if you need help accessing HUD, Housing and Urban Design, if you need access for travel and transportation, different areas in Pennsylvania have different types of transportation that is available to you. So it's all that sort of stuff, anything that is in the community.

STACY PHILLIPS: Thank you. All right. Next up is special considerations. Special considerations relates to specific vision loss, hearing loss, any challenges with behavior, communication, which would also encompass assistive technology if that's deemed appropriate for students that do not use speech to communicate or nonverbal communication. All of that is encompassed and included in special considerations.

And the last one is measurable goals and outcomes. So what are the expectations that you have for your child, and how will they be achieved? So that's really important, that it's not just, here's our goals, but you need to talk about OK, well, how are we going to get there? So that'll be your goals and outcomes.

MALINDA KNIPFER: And when we get to the IEPs, all of these are going to be in an IEP as well, but they might be labeled something different. Like, a statement of development in an IEP will be present levels of academic and functional achievements. The measurable goals and outcomes will look a little bit more not just on the functionality of the child, but also on the academic piece. We do have standards for pre-K-- academic standards for pre-K and learning through play that are developed by the Department of Education. So they would look a little bit different to what it looks like in your IFSP, where you're looking more just on the natural development milestones for children.

So the next things, though, that are required is going to be determination of services, so if you need nursing, if you need audiology, that's the same across both of them, is the determination of services, and the start and end date of those services. So you could have an IFSP for a whole year with an overall arching goal, but services might not be needed for the whole time. Usually, we would do it for that whole year, but that could change depending on the family dynamics, depending on family needs, depending on the child's needs.

Then, we have to have the coordinator name and contact. You have to be able to contact your early intervention coordinator, so you have a name and contact. I always recommend that parents put everything in writing. Even if you get a phone call, follow it up with an understanding of that call.

When transition will occur, so we're talking about when the child is getting to either-- is getting to that three year age, so 90 days before-- not less than 90 days before the child turns three, that should be listed in there, as to when they're going to get that transition meeting. And then, a date when the plan will be reviewed. So within the IFSP, if your child is only three months old when they sat with that IFSP, one year down the track, it should have a date that we're going to get back together, we're going to make sure--

But it's a working living, breathing document, whether it be an IFSP or whether it be an IEP. And have to remember that you can contact them at any time that things change or you have concerns, and you can ask for a meeting. It doesn't have to wait a whole year before you can bring those things up and get together again as a team.

STACY PHILLIPS: Awesome. Thank you. OK, so services and outcomes. So the next step in the process, so after you decide on the outcomes and objectives, you will talk about, what kinds of services could help your child do those things? If your concern is communication, how can we support him? Do we need a speech and language therapist? Do we need assistive technology? Those are the things that you'll talk about.

You're going to talk about the different people who could make the outcomes and objectives happen again, like I just said-- sorry-- speech therapists, for instance, so any of those providers or coordinators or instructors or therapists fit into this category. Who are the different people that can help?

And then, what you hope your child will accomplish. I love this one. I think it's so important for you to have high expectations for your child and making sure that what you hope for them to accomplish is known by the team. And then, you and your team will choose the people to work with your child. You'll sit down together and figure out, OK, here's what we decided, this is the need, who's going to work with them?

Then, here's a sample objective I wanted to give you. So give me one second, sorry. So the objective could be, Sam will learn to sit up so that he can visually attend to the activity. Mrs. Brown-- and then, the outcomes. Mrs. Brown will be taught three exercises that will strengthen Sam's back muscles by May 1st, and likely that would be an occupational therapist working with her to support her child's needs. And the next one could be, Sam will learn to balance in a sitting position while someone holds his hands by June 15th.

So notice that these both are direct, the outcomes and objectives. The objective is that he'll sit up on his own or at least supported, and how we're going to do that. And then, with this, we'll come-- OK, well, who's the best person to support the family in making sure that this happens?

Services must start no later than 14 days from the date you agree to these services described in the IFSP, unless you and the team agree to a later date. There could be other reasons why you don't feel it's appropriate to start right away. There could be other health impairments happening with your child. Maybe, they are scheduled to have surgery, and you want to wait until they've already recovered or recuperated from that surgery before you begin tackling these objectives, but most often, they will begin, they should begin, no later than 14 days from that date that you've all agreed upon. OK.

MALINDA KNIPFER: Can we--

STACY PHILLIPS: Yeah.

MALINDA KNIPFER: Yeah, we're right back in. We're right into the questions. I was just going to say, so what are some of the things that you, the parents, are looking for, for your child with your hopes for their future? I love looking at the future for my children. Sometimes, I don't always feel good about it, but other days, I see the bright sunshine and happy days, and I'm ready to rock it.

Does anybody have any real heavy concerns about their progress that their children are making? I just want us to be collaborative. We're all here to try and help and support each other.

STACY PHILLIPS: Feel free to unmute if you would like to share or type in the chat. We will give you a moment to do that. We'd love to hear from you.

MALINDA KNIPFER: Hey, Kerry.

KERRY CONLEY: Hey. Well, for myself, I have, like I said, my oldest that had the IEP graduated, and he's working with an agency called OVR to go to college. And they just did his neuropsych eval and all that to do the, I forget what they call it, the college--

STACY PHILLIPS: The College Readiness Assessment?

KERRY CONLEY: Yeah, no. It's like an IEP for college.

MALINDA KNIPFER: That's a 504, that's a 504.

STACY PHILLIPS: Or an ISP.

MALINDA KNIPFER: Or an ISP, yeah, but the ISP--

KERRY CONLEY: ISP, that's what it is.

MALINDA KNIPFER: --ISP would be through his service provider, not the actual college.

STACY PHILLIPS: Right.

KERRY CONLEY: Right. So we're working on that, but my youngest daughter, who is in ninth grade this year, my concern for her is self-advocacy. In her IEP, it says that she can go to alternate rooms for testing with special ed staff. However, she has to advocate that for herself. So I was-- I'm not sure how I missed that or what happened there, but she had failed three tests this year at the beginning of the school year in a new-- she's at a vocational technical school in York County. And she did not advocate for herself so she bombed the tests.

So just the self-advocacy and having the staff aware that she's supposed to self-advocate. However, if she doesn't, then what are we going to do about that to help her along a little bit? And she has like-- her diagnosis is autism level one, OCD, social anxiety, generalized anxiety, so she gets very nervous having to talk to older people.

STACY PHILLIPS: Yeah. This is Stacy, so I just want to jump in really quickly. So I will say that a ninth grader who doesn't self-advocate is more common than it is uncommon, despite the disability diagnosis.

KERRY CONLEY: Right.

STACY PHILLIPS: I have two children that are ages 19 and 24. And as freshman in high school and in college, there are plenty of times where I've had this conversation with them, "you need to advocate for yourself," and neither one of them felt comfortable doing that. So being that your daughter has autism and some other things going on-- my whole family, I swear, has generalized anxiety or social anxiety, so it's not that uncommon.

So, I think, my suggestion, and you can take it or leave it, would be something like, having a 3 by 5 index card that says, I'd like to go take the test in another room, I need support, so that she doesn't have to physically ask. But maybe, she keeps it on testing days near her, and if she needs it, she can hand it to the teacher. And just ask the teachers like, hey, when she hands you this card, I'd like her to be taken out for small group testing. Because even just handing them that card or even her putting it on her desk, not even having to approach them, this is just a suggestion that I have that came to mind when you were talking about it, but there's definitely ways to support her in that. But self-advocacy is a tough one.

KERRY CONLEY: That's a great idea, by the way. That's a great idea.

STACY PHILLIPS: Thank you. Yeah, give it a try.

KERRY CONLEY: Yeah, I will.

MALINDA KNIPFER: And also know, accommodations is-- accommodations are a right. They level the playing field. They're not a leg up. Right? They are--

KERRY CONLEY: Right.

MALINDA KNIPFER: --it's not a cheat. So accommodations, even under 504, reasonable accommodations, they are given. Students should not have to ask for them. What you probably want to do, in conjunction with that idea from Stacy, is that she works with guidance on being able to talk about her needs and her wants and being able to relay that to different people because she really-- that's a tough, hard skill, and if you have anxiety on top of that, that is something that has to be explicitly taught.

How can I do it where I feel safe and comfortable? It's not just about putting my hand up and saying, I need this.

KERRY CONLEY: Right. I agree.

MALINDA KNIPFER: It's about that--

KERRY CONLEY: I agree.

MALINDA KNIPFER: --safe and comfort. So, to me, it would be working with the counselor, the guidance counselor, or the school mental health team. But Stacy's idea about having the card, where they don't even have to approach, is great, but I would want her to be given it first, and then, fade that out to the card when she's gotten more comfortable.

KERRY CONLEY: OK, yeah. Because, like I said, she's in a brand new school. She did remote learning for the last two and a half years because of COVID, her anxiety was through the roof. She didn't want to get COVID and die, I mean, so she didn't want to go to school. Then, once we all had COVID and recovered and we were fine, then she was like, I think I can do this, I'm going to be OK. But just making sure she has the hand sanitizer with her at all times, and there's just things that she does with her OCD behaviors that has to be or her entire day is ruined.

But yeah, that card is good, and I will talk to guidance and her case manager. Her case manager is actually one of her teachers this year so that's good.

STACY PHILLIPS: Oh, that it good.

MALINDA KNIPFER: And they can also add that as a service under the IEP so she'll have specially-designed instruction for the card and then the service to back that card up with the self-advocacy piece, because [AUDIO OUT] goal for everything. That's the accommodation. So then she gets the services to back that up, as well.

KERRY CONLEY: OK. Good idea. And I have her in private counseling too, so that's something we can also work on is just like--

STACY PHILLIPS: Yeah, that's a confidence thing, too. That's not an easy thing to combat, being able to self-advocate.

KERRY CONLEY: Yeah.

STACY PHILLIPS: For sure.

MALINDA KNIPFER: And we don't want to put kids in situations where they don't feel safe. The anxiety comes from a feeling of not being safe or not being in control. So if she's not feeling safe enough to ask, they have to just give.

KERRY CONLEY: OK. Yeah, because that's a good idea. I don't know why I didn't think of that. Sometimes, you just--

STACY PHILLIPS: You can't think of everything.

KERRY CONLEY: I know, right?

[INTERPOSING VOICES]

KERRY CONLEY: Well, for like elementary school, for instance, we kind of did the same thing with going to the bathroom because she was scared to ask to go to the bathroom. So she would just put a thumbs up and leave, and they knew where she was going because she was like, waiting to the point of almost having an accident. In fifth grade, sixth grade, that's a little embarrassing, but she didn't want to ask to go to the bathroom. So she just put a thumbs up, and then went to the bathroom, and she didn't have to say anything. She just showed them the thumbs up and left the room. So that's a good idea about the card. I'm going to bring that up. Thank you.

STACY PHILLIPS: You're welcome. Glad we could help. Anybody else feeling brave and want to share or ask a question at this time regarding any of the things that we have talked about so far?

MALINDA KNIPFER: Sarah Beth, did you want to-- did you want to talk about anything? I know that you've put in the chat a couple of times. I didn't know if there was something that you wanted to share in regards to your experiences or that you have a tip or a trick for parents. And I don't want to just call you out.

SARAH BETH: I'm going to try. I just, I have COVID right now--

STACY PHILLIPS: Oh, no. I'm so sorry.

SARAH BETH: --so I have a hard time talking for more than a minute or two at a time. But remember that self-advocacy is a skill set, and they may need to back up and assess and then explicitly teach and set goals in the area before moving on to expecting self-advocacy. I've seen a lot of teams kind of put parents and their students at a disadvantage because they go to the age appropriateness and just insinuate that it's a skill set that by a certain age has to be present, and that's not the case.

STACY PHILLIPS: Great point.

SARAH BETH: So just to remember that they may need to be encouraged to remember that it is a skill set. Especially if there's autism and other things involved, that needs to be explicitly taught.

STACY PHILLIPS: Yeah. Thank you.

SARAH BETH: Then, set goals within that and then back it off. I see way too many times where it's being-- the data that you need, the parent that spoke earlier, is that she had opportunities to self-advocate for her testing and didn't so that's information to document. Three out of three opportunities since the school year started in testing, she has failed to use the opportunity to self-advocate to improve her circumstances, so we need to have a meeting and readdress this.

STACY PHILLIPS: Excellent, yeah. Thank you so much, Sarah, and we hope you feel better.

SARAH BETH: Thank you.

MALINDA KNIPFER: Absolutely. Sarah Beth, I'm so sorry that you feel--

SARAH BETH: I just hope people could hear me.

STACY PHILLIPS: Yeah.

MALINDA KNIPFER: Yeah, we could. You were great.

SARAH BETH: OK, good. Thank you.

MALINDA KNIPFER: I think that that's a really good thing, though, even for parents to think about because oftentimes, when we're in these meetings, we can feel really intimidated by who's at the table. We feel like we don't have as much information or background knowledge as the other people. Well, no, you do, and you have to be able to self-advocate, not just for your child, but for yourself, as well. I think, what Sarah Beth said, though, relates to everyone really because it can be intimidating at the table.

STACY PHILLIPS: Yeah, for sure. And I love that she also pulled in like IEP, three out of three times, my daughter failed to self-advocate, so now we need to explicitly teach that skill set. That was great.

MALINDA KNIPFER: I'm like, five out of five times, I forgot to close the refrigerator and had the chocolate in my hand.

STACY PHILLIPS: Awesome. Thank you, guys, so much. I appreciate the input, and we're going to move on at this time, talking a little bit more about transition and IEPs.

MALINDA KNIPFER: So transition just means movement from one program to another, and that can be hospital to home, infant toddler EI services to a preschool early intervention service, early intervention services to early care and education settings like Head Start, Pre-K Counts, or childcare programs, early intervention services to school-age kindergarten, first grade. Not every student goes straight into kindergarten, parents sometimes don't-- we have the opportunity in PA to be able to start our children in first grade, rather than kindergarten. But just remember that if you choose not to put your child into kindergarten at that age five is that they may not be able to qualify for an extra year like at Head Start or a Pre-K Counts because they do cut off at that fifth birthday.

STACY PHILLIPS: Yeah, that is something to consider when you're planning what's happening for next year. I also want to add that the word transition often gets used when people are thinking about high school to college or beyond high school, post-secondary life, and it also gets used a lot in this range, birth to three, three to five, but I just want to point out that transitions happen across the lifespan, especially during the educational process, whether the child's going to a new school or they're staying in one school. And as they grow and age, there's so many transitions that they're going to experience. So it's just something to think about, that transition is part of all of our lives, changes happen, and we are transitioning from one thing to another. And having to leave behind things that we did and routines is particularly difficult for our children with disabilities and autism, who may perseverate on one thing or get attached to one particular teacher or provider or therapist.

And just, something as simple as transportation, I just want to share really quickly. So my son gets private transportation to school, and started today, actually, a brand new company providing transportation, and all morning kept telling me, his stomach hurt, and he was really anxious. He didn't tell me he was anxious. He usually just says I have a stomach ache, I think I'm going to throw up, but I know what that means. It means, I'm nervous because I have a whole new transportation company providing that cab.

And even though he's not attached necessarily to a cab driver, he was really nervous about being in a different car and a different company. We're excited about it because it's a good thing, but he was really anxious. So even just that small thing is a transition so it's just important for us to prepare our kids for these transitions and thinking about what's needed for that process to move smoothly. So I just wanted to share that.

MALINDA KNIPFER: And that's where it pulls us into the thinking about what my child needs, what can be provided, how do we do this, and being prepared for going into those meetings. So honestly, there's really, two parts of the questions that we're going to be asking is one of ourselves and what our family needs and then two, who, what, when, when you go into the meeting as part of that team So you need to know all your options. You're not going to know that until you ask for them.

So what is needed for my child? What is going to be available? Who's going to be involved? Where are they? And again, here we go, when is this transition going to occur? How will it occur? What activities will help my child adjust to the transition? This is all in the planning.

What support will my family need through this change? So like Stacy said with her son, hers comes out as anxiety. My son's comes out as aggression when we're going from a transition that he was not fully prepared for. So my family also needs support for when the aggression happens. My child needs support. So these are the questions that whenever we're doing anything for transition, and transition could just be going from the car to the building, it could be going from one program where we're talking about here going from early intervention services into school age, three to five, these are the things that we, as parents, need to be thinking about as we're going in.

I always recommend make a list-- make a list of what's important to you and your family, and then make a list of the questions to ask on, how do we achieve this? Because you don't have to have all the answers. As a team, that's what you're supposed to do is then find the plan, put the plan together, initiate the plan, and then have the answers.

STACY PHILLIPS: Great point. I write everything down. I prepare all my questions before an IEP meeting. I know that once I get in that room, I will not remember anything that I wanted to talk about. And sometimes, it's just a matter of going into my Notes app on my phone and putting a bulleted list, don't forget to ask about X, Y, and Z, or maybe I actually write it out on paper because I like paper and pen.

And I actually write out how I want to word the questions because sometimes that's important, too. But it's so important to think about yourself in this equation, of course your child is the center, but, like Malinda said, they have to prepare her son for these moments where he might become aggressive, but then they have to prepare their family. Like, OK, what do we do in response to that? There are so many layers when it comes to transition.

MALINDA KNIPFER: And when you're thinking about transition, when you're in that zero to three range, is that you want to make sure that around that 30 to 32 month age group that you're then, if people haven't come to you and said, well, we've got to get these transition meetings started or we've got to plan for this, you need to be planning, too. So if you have a reminder around that 30 month--

STACY PHILLIPS: Two and a half years old.

MALINDA KNIPFER: Two and a half, yeah.

STACY PHILLIPS: I can't-- I literally had to sit there and calculate.

MALINDA KNIPFER: And that's right, and we did-- in C2P2--

STACY PHILLIPS: Two and a half years.

MALINDA KNIPFER: More like, I cannot do the months, stop the months. So at two and a half years, you want to start looking at it because you've only got three months before you then have to have that planning meeting, anyway.

STACY PHILLIPS: Right

MALINDA KNIPFER: So where is my child now from where they were, have we made enough progress, are these areas starting to be remediated, and just looking at those pieces to see what you want for them going forward.

STACY PHILLIPS: Yeah, awesome. All right. We're going to move along. I want to make sure that we don't go over our time. We have about 30 minutes left together, and we're going to talk about the purpose of the IEP.

So if you have children receiving IFSP or Early Intervention Services, you might think, wow, that is a really long way off, I can't even wrap my head around the IEP and what's going to happen next because these transitions come up so fast, so it's always good to just kind of have it in the back of your mind. Even if your child is three years old or two years old, just thinking OK, what's coming next? And it'll just better prepare you.

So the IEP provides for special education and related services, as we've mentioned a few times, so that they can access the general education curriculum. I want to say that, again. It's not so that they can access special education curriculum. It's so they can access the general education curriculum because ultimately, if they are able, we want our children in the least restrictive environment, and we want them to be able to be in classes with their non-disabled peers and access the same curriculum. Unless, of course, they need special education, in which case, it's there, it's available, it'll be part of the IEP, but thinking about, what your goals are for your child so that they can be in the least restrictive environment and learn with their peers? And Malinda, you want to take over the bottom part there?

MALINDA KNIPFER: Yeah. So the whole purpose of the IDEA, Individuals with Disabilities Education Improvement Act, is planning for adulthood. So this is the systemic planning of what somebody needs to be able to develop through every stage of their next three to 21 years. So the programs and the placement going through that Part B should always be identifying areas your child needs to learn that are meaningful, goal-specific, measurable, and has purpose. And I always bring to the one about teaching children things that are no longer needed, though. I've had students where they are still trying to tie their shoe, and they are 19 and 20, and that's been a goal since they were in kindergarten.

STACY PHILLIPS: That's my son.

MALINDA KNIPFER: We have--

STACY PHILLIPS: I told him to stop.

MALINDA KNIPFER: Yeah, because we have technology, in the way of magnetic shoelaces, slip-on shoes, that makes that now not meaningful. IF we can replace something with a tech or something that can be modified, why waste time? But it's, again, up to him. My son is 16. He cannot tie his shoelaces. He wears splints. He can't tie his splints. We have to have nursing sense. We have a lot of things that are in place for him that take the place of him having to do it.

So why waste our time on goals to do these things when we've replaced them already? So we want to make sure that they're meaningful, they're goal-specific, and they're measurable, because if they're not measurable, then you can't tell whether or not something is getting achieved, and they have purpose. So tying shoes for my son, there is no purpose.

STACY PHILLIPS: Ditto.

MALINDA KNIPFER: We don't do that.

STACY PHILLIPS: Yeah, I can-- My son has really cool slip-on shoes.

MALINDA KNIPFER: So does mine! The peeling a potato for my son who has contractures in his hands isn't going to benefit him because it's actually going to cause contractions because of the way you have to peel. There's adaptive peeling that we don't have to do it. He doesn't eat potatoes, anyway. He eats boxed potatoes, so he doesn't need to learn how to peel a potato.

So what's meaningful, what has purpose for you, for your child? And then, you weed out all the things that norm to society says that they have to learn. Do they have to, really? So that's your decision to make.

STACY PHILLIPS: Thank you. Awesome. All right. I just, really quickly, wanted to ask if you wouldn't mind dropping in the chat, do we have any families on the call today whose children are receiving early intervention services or have an IFSP currently? Because we've talked a lot about IEPs as well, and I know there's a couple of parents here who have older children. So, I think, we're just curious. If you do, if you could drop that in the chat, that would help us to know where to focus our attention for next time.

And while we're waiting on that, do you want to talk about the least restrictive environment?

MALINDA KNIPFER: Sure. So least restrictive environment is not actually a room. A lot of people think of it as a room where services provided. If we think about it, it's actually general education. And if you see where I don't have general education classroom because it's not just the classroom. It is the cafeteria, it is the gym, it is the playground, it's general ed, it's with their non-disabled peers, and the first level of that is going to be without supports. So when we look at a support or a supplemental aid or service, would that restrict for that particular student?

And least restrictive environment for every single student is different. If a child can be in general education without supports, that's the least. Then, we go into general education with supplemental aides and services. And before we look at placement for any child, we must look at general education, first. What do they need in that room to be successful? And sometimes, whether that be the classroom, whether that be the gym, or the playground, and sometimes they need a whole pile of supports and services given, but it's still least restrictive. They're with their non-disabled peers, and then, you can always have plans for fade out of those supports.

We have children with Down syndrome in least restrictive environment every single day in gen ed classrooms, and I get kind of cranky when I hear a team say, well, we can't do that in the general education setting. Everything can be done in the general education setting. We have modifications to general education curriculum through the SAS portal, it's a Standard Aligned System for Pennsylvania, so they can get the same general education materials, but have them adapted as what everybody else is learning.

STACY PHILLIPS: As well as, staffing. They can have a one-to-one. They can have a BCBA, which is a behavioral specialist, with them or just an aide of some sort or nursing. So whatever it may be, there are always solutions to the--

MALINDA KNIPFER: And they can't remove a child just because of their eligibility criteria, whether it be autism or ED or what have you. They can't just say, oh, well because the student has this, they must go into a self-contained autistic support classroom.

STACY PHILLIPS: Right.

MALINDA KNIPFER: So we have to look at that. Then, we have-- and that tier two can include services for part of the day in a self-contained classroom. When my son was in gen ed, we had it where he could go down to the autistic support classroom when he was overwhelmed, and his aide would take him down there. So my son cognitively is declining, he was in a general education setting, but he had an aide, he had a behaviorist, he had his nursing, and he had modified curriculum, but he was in the same classroom as all of his peers. We just adapted everything for him.

Self-contained special education classrooms and/or programs are a little bit more restrictive, because they don't have the continuity of access and the amount of access to non-disabled peers. When we look at least restrictive, it's how much access do they have to the general education setting with non-disabled peers? So self-contain's a little bit more restrictive, but we also have known public schools where they are not being educated even in a building with non-disabled peers. It is all usually one type of disability or a couple of different types of disabilities that sort of interlace together.

And then, we have our home hospital and residential, which is our most restrictive because they're not in the environment with other students or peers. We're not talking about siblings. We're just talking about peers.

My son is in a non-public school. He's in an APS because his behavior, his aggression, and particularly as he's getting older, with the brain damage, it's becoming more prevalent for him. He's dangerous to himself. And for me to put him into a situation, particularly as a big teenager, this kid was a 4 pounds preemie who is now 218 pounds almost 6 foot tall. So he's a big boy, and for us, this is his least restrictive because he's safe. He's in a place where every single person in that school knows exactly what to do with him, and he's not going to get harmed. So that, for us, was least restrictive for him.

When he was younger, least restrictive was that gen ed setting. He was littler, he was a bit more manageable--

STACY PHILLIPS: Same.

MALINDA KNIPFER: Now, we're at this point. So thinking about that, too, for everybody, least restrictive can change as your child changes.

STACY PHILLIPS: And it doesn't automatically mean the public school. Your neighborhood school, in a regular classroom, that's what, I think, a lot of people, when they think of least restrictive, is what they assume, but you have to also make sure that it's appropriate--

[INTERPOSING VOICES]

STACY PHILLIPS: --for your kid.

MALINDA KNIPFER: Yeah. When schools came back, because of his immune compromise, we were on number five. We were home, hospital, residential area in the amount of he was still home after all the schools went back for COVID for a whole year after that. I mean, it wasn't just that one year for him, but because of his doctors, they couldn't have him go back to school immediately. So we went from our least restrictive in an APS to a more restrictive setting at home because he didn't have access to any peers.

STACY PHILLIPS: Yeah. All right. We are coming down to the wire.

So as you've noticed over the last hour and a half, there are a lot of acronyms when it comes to early intervention and just education and special education in general, and we wanted to kind of give you a snippet, if it's something that you needed, of some common acronyms. We've already mentioned quite a few of these, but in case you didn't know any of them or you needed us to define them, here is a nice, little alphabetized list for you of some of those common acronyms that you might see.

And also, when you're sitting in those meetings, those IFSP and IEP meetings, you want to make sure that you are an informed participant. And if people are talking about things using acronyms that you're not aware of, it can be intimidating. But we wanted to make sure that you have this list as a reference so that you know what these things mean, but you can also ask more questions about them of your team when you're in those meetings. Anything else to say about those?

MALINDA KNIPFER: There's a lot more acronyms that--

STACY PHILLIPS: Oh, yeah.

MALINDA KNIPFER: --you come across.

STACY PHILLIPS: There's so many. These are just a highlight.

MALINDA KNIPFER: Just a highlight of the ones that you're going to see in the next from birth to five. And then, as you're going through different departments for different services and waiver services and OVR and those types of things as your child transitions, you're going to get a whole other big pile of acronyms. And I just do want to say that PaTTAN actually has a really good ABC list of--

STACY PHILLIPS: Yes.

MALINDA KNIPFER: --acronyms that you can download on, you know--

STACY PHILLIPS: And PaTTAN is the Pennsylvania Training and Technical Assistance Network. Some people call it PaTTAN, some people call it PaTTAN. I don't know. If you're in Pennsylvania, you are probably very aware of PaTTAN.

I also want to mention that I love PaTTAN. They have a lending library for assistive technology for staff of any school where teachers and anyone supporting a person with a disability can borrow an assistive technology tool kit based on the needs. So you go to their website, and you look at their needs, the area of need, whether it's hearing, mobility, vision, et cetera, and they will send you an assistive technology tool kit that you can borrow for up to a month or five weeks--

MALINDA KNIPFER: But the school or agency has to order it.

STACY PHILLIPS: Yes. It has to be only like, a principal or someone working with that student. The other thing that I want to mention about that is that this only can happen during the school year so September through June. And usually, by May, they're asking you to send it back if you've still got it. So it's just, I know there are some professionals on the call today so I just wanted to mention that.

We also have a lending library here at the Institute on Disabilities, known as TechOWL, or Technology for Our Whole Lives, and our lending library, you can borrow equipment. We have about 1,100 items right now in there to borrow in various categories of need.

MALINDA KNIPFER: Which actually, we need to put a check out on our resource page.

STACY PHILLIPS: We should, yes. We will, as--

MALINDA KNIPFER: Anybody can put a profile in for the lending library, and it's free.

STACY PHILLIPS: Yes.

MALINDA KNIPFER: You don't pay for any postage, you trial it, and you send it back--

STACY PHILLIPS: Yeah.

MALINDA KNIPFER: [INAUDIBLE].

STACY PHILLIPS: It will be shipped UPS, and that is only for Pennsylvanians, FYI. So we did put this short list together for you of some of those resources. They are hyperlinked so you can click directly on them. The Early Intervention Technical Assistance, or EITA, also has an app that is fantastic. If you were interested in downloading the app, it really has a lot of great resources for families, as well.

And that's all we have. I will ask for you to complete an evaluation form, which now I'm trying to figure out how to copy and paste and put into the Chat.

MALINDA KNIPFER: Do you want me to pop it in the Chat?

STACY PHILLIPS: Yeah, can you? Because it won't let me highlight it, and pop--

MALINDA KNIPFER: That's OK. I've got it right here for you.

STACY PHILLIPS: Thank you. So we appreciate you being here today, and we would love to take some final comments or questions while Malinda is putting that form in the Chat. Everything that we do here at the Institute on Disabilities and Families First are grant funded so feedback is extremely important to us. It'll probably only take you about a minute or two to complete, and they are anonymous. So thank you for putting that in the chat, Malinda.

MALINDA KNIPFER: And anything we can do better because we are going to be presenting a second one so--

STACY PHILLIPS: Yes.

MALINDA KNIPFER: --please be really honest and open about what we could do--

STACY PHILLIPS: Be kind, but be honest.

MALINDA KNIPFER: Constructive criticism is always welcome.

STACY PHILLIPS: Yes, for sure, for sure. Does anyone have any last minute questions or comments that they would like to make? Please, feel free to unmute. Our contact information is on this screen, on the slide. [click-for-email] is how you can reach me or by phone, and Malinda is [click-for-email], and there's her phone number, as well. We are happy to answer any follow-up questions that you have. And then, on November 9th, we will be talking a little bit more about IEPs and diving into transition for older children, and what else?

MALINDA KNIPFER: I mean, it's really-- that is more about that three to five, what happens next, and then talking sort of at the end and really explaining about that transition from the two-- because technically, we're already in school age at that three to five, but actually going into school, transitioning from a pre-K or a childcare center into a school base.

STACY PHILLIPS: I am going to stop recording now, and I appreciate everyone being here.