Common Sense Parenting with Pam

Special Needs Pro: Advocating for Your Child

• Pam Palanza • Season 2 • Episode 8

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Special Needs Pro

Special education can be a labyrinth for parents, but today’s episode promises to equip you with the tools to navigate it. Join us and our special guest, Nancy Perkins, a seasoned special education advocate and licensed social worker, as she shares her wealth of experience and personal journey. As a mother of a child with autism, Nancy offers unique insights into the emotional and procedural hurdles that come with understanding diagnoses and maneuvering through the intimidating world of IEP meetings. Her professional and personal perspectives emphasize the critical importance of parental rights and highlight how collaborative efforts between families and schools can lead to the best outcomes for children with special needs.

Throughout our discussion, Nancy sheds light on the myriad challenges that arise from inadequate school resources and the overwhelming demands placed on teachers. She explains her vital role in identifying and addressing IEP red flags through Special Needs Pro, ensuring children receive the support they deserve. We uncover the intricate dynamics within families, especially when disagreements on educational evaluations occur, and the additional complexities introduced by third-party involvement. Nancy also stresses the importance of understanding legal rights and being a proactive advocate for your child, especially when facing budget constraints and school system intricacies. Listen in for practical advice and insights on fostering effective communication and collaboration, ensuring every child with special needs reaches their full potential.

Speaker 1:

Welcome to Common Sense Parenting with Pam, the podcast where we simplify parenting with common sense tips, real life scenarios and a little bit of humor along the way. I'm Pam and I'm here to help you build the skills and confidence you need to raise happy, resilient and responsible children. So grab your coffee, take a deep breath and let's tackle parenting one common sense tip at a time. Well, hey, everybody. And let's tackle parenting one common sense tip at a time. Well, hey, everybody, and welcome to our podcast episode today. I'm so excited because this is our first episode where we actually have a guest. You usually just have to listen to me talking, but today I have a special guest who actually reached out to me through social media. Right, that's how you found me.

Speaker 1:

Yes, her name is Nancy Perkins. She's a special education advocate and I am so excited to have you on, nancy, because we've talked prior to this and you know that I have experience with family members and dealing with school system and IEPs and all that good stuff, and I was fortunate enough that I knew enough to be dangerous not too dangerous, but new enough but I have followers, a lot of followers that have neurodivergent children, that are dealing with IEPs, dealing with school systems have children with autism. They're overwhelmed. And then you go into an IEP meeting and then it's like they're speaking a foreign language to you and you're not sure what they're saying and you're just floored. And it's like they're speaking a foreign language to you and you're not sure what they're saying and you're just floored and it's so confusing.

Speaker 1:

So when I heard that you are a person who can help families, I was so excited to have you on today. So welcome, thank you, thank you. So tell us about your. Tell us first of all about your background first, so people can know where you're coming from. Let's start there.

Speaker 2:

Okay, well, thank you so much, pam. I'm Nancy Perkins and I live on Long Island in the New York metropolitan area. I live in a suburb, live and work in a suburb which is about an hour or so outside of New York City. I have a Master of Social Work degree from Adelphi University and I am a New York State licensed master level social worker and I have a variety of social work experiences. I've worked with different populations, but special needs, children with special needs, learning disabilities, developmental disabilities it's always pulled me like a magnet, even before I became a parent. My child has what we call level one autism, what in the olden days used to be known as Asperger's syndrome. I have 11 and a half years of experience working in a special education preschool and the children in our preschool they were kind of a mix of disabilities. We actually we had very many, many medically fragile children, children that were tube fed, children that had seizure disorders.

Speaker 1:

I'm fascinated by your background because I connect a lot with you on a lot of things working in kids with special needs, working in childcare, all those kinds of things. What led you to decide I need to be, I need to advocate for these kids outside of a job. Working for somebody else, what, what was that brain change? What led you to that decision?

Speaker 2:

I don't think it was one particular thing. When I think about it, I think it was. It was a series of moves that happened in the different populations that I worked in. It just it kept happening over and over, over and over again. That began to plant seeds. So this took, this all took a long time. So you know, it's all of this, it's not even 1990. And I got my degree in 1989. And so I was moving along and in the early 90s I had gone to work in the special education preschool. We did screenings for kids to see if they qualified for services and if, after we had our meeting to discuss evaluation results, the school psychologist and I would do what we called an informing and we would give our recommendations. So when I was working in the school for 11 and a half years by then, I was very, very, very involved in that half years.

Speaker 1:

By then I was very, very, very involved in that as a parent, hearing from somebody your child is diagnosed or labeled, however you want to say it with this. Sometimes it's a shock to the parent, even though you would be like how did they not know this? How could you not see it? It's really obvious. But as a parent, to maybe suspect it or not be aware of it at all and then get a diagnosis, or here's what we need to recommend based on this assessment we've done of your child, that can be a really emotional moment for families to have somebody who knows what they're talking about and is skilled in it and you help kind of ease that for the parent, because that's hard to hear. That's hard to hear. You know it's nice to know there's somebody out there like you that can help families with that. You know those changes that happen. And then you know I've had to go up against the schools myself and we talked about that before and I'm not going to detail here, but multiple times I've had to go up and advocate for my child with the schools, and not that they're, not that I'm bashing schools at all, because what I told the teachers when I had to meet with them that day is. We're a team. It's our job to work together to meet this child's needs. It's not just yours, just mine. We're a team. We have to work together to make this work.

Speaker 1:

So tell me how you. Well, let's back up. Tell our listeners what exactly you do with the family. Say I'm a family and I come to you and I say, nancy, my son's just been diagnosed with autism and he's in second grade and the school's talking to me about this thing called IEP and I don't know what that means. I don't know what I, what I do, what services is my child entitled to. So kind of, take it from there and riff on telling us what it is you do and how you handle it, how people find you.

Speaker 2:

Well, how people find me is, excuse me, I have a Facebook page special needs pro, okay, and I also have a website by by the same name and I'm on threads. If somebody and I also, I engage. I'm on a lot of different pages special needs, parents pages and I'll answer people's questions. If somebody says that you know what the scenario that you just presented, what I do is, I've begun to really assume nothing and start from scratch. And I will ask them I'll say, has your child had an evaluation through the school district? And it depends on what the answer is. If they say, well, no, and this is just hypothetical I'll say to them well, you need to make a request in writing. And what I always say to them well, you need to make a request in writing. And what I always say to parents constantly is when you're making such a request and you're communicating, always do it in writing.

Speaker 2:

There are two reasons for that. One of them is people are very busy and they and they forget. You can't. You know everybody's very busy. But also there is a saying that if it wasn't written, then it wasn't said. There's a very famous special education lawyer by the name of Pete Wright and he's a he's an absolute rock star. He lectures, he has a newsletter, his rights law newsletter, and that's I think that's where I read the saying from. If it wasn't written, then it wasn't said. And lawyers probably say that all the time Documentation, honey, documentation is everything.

Speaker 2:

And so you know, the email is proof positive, you have the timestamp and you make the request you are requesting, you want the consent, you want your child evaluated. Let's say, for instance, you think the child has a speech delay. You're requesting a psychological evaluation, educational evaluation, speech and language, if you think, maybe a problem with fine motor skills, like you know, with fingers, hands, occupational therapy. Now I'm going to backtrack for a second, because this is something I've heard. I've heard people have said oh, but his teacher said his speech is fine and he understands them. It's speech and language, because it's not just articulation, it's not just about do they stutter, disfluency, it's about what do you understand, what are they understanding? What are they perceiving the perception.

Speaker 2:

So you make these requests, the districts. The clock starts ticking. Once that request goes out, the clock begins to tick and they have a certain number of days to either grant your request or they say no. But they can't just say no, sorry, we're too busy. If they say no, they have to provide you with something called a prior written notice, which in Pennsylvania they call it a NOREP. What is it? Notice? I forgot what the acronym stands for, but, and it goes by different names but the prior written notice is something that takes place, that is generated when an action has taken place, when it's accepted or refused, and it's an explanation as to why we're going to do this or we're not going to do this, so that you know and they can't just stop you in the hall or call you on the phone and say, ah, we decided we don't need to do it.

Speaker 2:

No, that doesn't it writing?

Speaker 1:

Oh yeah, oh yeah, can I compare and appeal it? Okay, I'm getting to that. Okay, I'm going to get to that.

Speaker 2:

So if they say you know what speech and language, nah, he's fine. No, no, he doesn't really need it. You can oh, you're also supposed to be given a document it's about 49 pages or so called a procedural safeguards notice. It's from your state. That's a very thick document, but it explains what your rights are. So if they say no in the prior written notice, you can say, oh, you don't think he needs a speech therapy evaluation. Oh, you know what? I am making a request in writing for an independent educational evaluation for speech. That is when the speech therapy or there are other evaluations you can ask for, but only one per year. That is something paid for at public expense.

Speaker 1:

So that's done by an independent person, not within the school system, and the school has to pay for it. Just want to be clear with people listening.

Speaker 2:

Okay, the person is, they're not employed by the school district, but they are under contract. So either they will either pay for it or, in the case of we have a case of a neuropsychologist out here you have to right now. You have to pay him up front and wait to get reimbursed. You have to right now. You have to pay him up front and wait to get reimbursed.

Speaker 1:

But all these evaluations are needed for the child's benefit, to determine what services then the school is responsible for providing. That then will be going to the document, the IEP. So tell people what an IEP is. We have a lot of people who are not familiar with this terminology. So explain what an IEP is for us.

Speaker 2:

One more thing before I explain the IEP. If you ask for an independent educational evaluation the district they only have two choices. That's another case of you can't say sorry. They either grant it and give you a list of providers and you don't have to choose the list of providers, or they say no, we've decided, you know, according to our PWN, and we're going to take you to due process because we think everything is fine Now.

Speaker 2:

An IEP stands for Individualized Education Program. What it means is that you have to look at what are, first of all, what are the child's needs? What do you know, based on the evaluations that we have, what are his needs? What you know? What's going on? How did he score? And not just academics, but social, emotional. Is there some behavioral? Is there anything we saw with executive functioning? So then now, how do we put goals together? What do we do as far as that's concerned?

Speaker 2:

And the very last thing we come up with is placement. A big thing and parents have heard this is that they've heard this in meetings oh sorry, tough luck, we don't have that here. We'll just we'll have to put you in this placement, and so we don't do that. Here is not, you know, if it's not in your district and you really cannot service the child in your district, then the onus is on the district to look for an appropriate out ofof-placement district for the child. You know so you can't say we don't do that here. It's very difficult, you know it's very. It is the only way I can put that. It's just hard for everybody.

Speaker 1:

It is. I can see why. I hear a lot from teachers in the public school system who have children placed in their classrooms or have terrible behavioral needs. They're not, they're not able to met in the classroom. They're extremely disruptive to the whole classroom. And then the teacher's like we have to evacuate all the kids out of the room for this one child throwing a fit in our room.

Speaker 1:

So again it goes back to these expectations on these teachers who don't have the skills and the training they need to best meet that child's needs, and it's not fair to the teacher, it's not fair to the child, it's not fair to the other children in the classroom. It's a tough spot sometimes, it's just a tough position to be in all around, but that's why they have people like you so back up. So just so people are clear, I want to make sure everyone's clear you are now on on your own. You have your own business, special Needs Pro, and so people contact you and they pay you to be like the liaison, to review notes. Tell us what all you do when people are hiring you to to advocate for their child is.

Speaker 2:

I will ask if, assuming somebody has an IEP and, let's say, a meeting is coming up, I'll say please send me the most recent IEP and any reports that you have, medical reports or you know anything outside if you had an outside neuropsych eval, you know and I'll ask them to send me pertinent documents and I review everything and I cause I, I'm looking for red flags. We, my colleagues and I, we have our, our recommendations, but I'll look for red flags in IEPs and I'll see things like things that don't make sense. I've seen the wrong child's name on IEPs more more than once, where it get finds its way into a report where you can tell it's been cut and pasted, you know, and it's just wait a minute, wait a minute and I'll circle it and I make no bones, I'll bring it up at the meeting and I will say to the administrator the wrong name is there. I'll say to the parent beforehand the wrong name is in the report and so they have to fix it. No-transcript said no, thank you. I said no. No, I'm not an attorney, not not an attorney, I just have to. I said I'm an advocate. I don't want to mislead anybody. There are times when it gets adversarial and they need an attorney and I'll send them to one, but I won't. I'm not going to practice law without a license. The other thing, too, is that if I can't do something for them, I'll tell them.

Speaker 2:

I had a phone call. A woman called me and she said can you get my child into private school? And she sounded very enthusiastic and I went and I said no, I it doesn't work that way. What do you mean? And I explained, and I and she said I don't like my child's school. And she mentioned a school district like an hour or so east of me. I don't like my school, I want to put her in private school. And I said well, I said there's a whole process to it and I explained the process. I said if you want to, if you want your district to pay for it, you have to take your district to what's called due process. You have to hire an attorney and it's expensive for her. I said if I could make it easier, I would. I said, but it's. I said I'm not going to tell you that I can do something that I can't do. She was so disappointed.

Speaker 1:

Okay, let me ask you this, a couple questions about that. So the parents contact you, they either have an IP or they don't. If not, you advise them to get that process rolling with an IP. Then, if they're coming to the meeting, you'll sit in on the meeting, you'll review the notes, you'll go to the meeting with Zoom. I know you're based in New York, but you can consult with people all over America, all over the United States. Oh yeah, so you can even sit in on meetings virtually Sure, virtually Sure.

Speaker 1:

Okay, what happens if you get a family and I'm sure this happens where, like, the mom is like an agreement, but the dad, so the mom and dad are not on the same page but their child needs? I know sometimes parents are in denial about. I mean, I know an instance right now of a friend who has a child in a preschool setting and the clearly this little boy in the classroom has some serious issues going on and mom is agreeing to get him evaluated and dad said no, absolutely not. There's nothing wrong with this kid when it's like red flags are dancing all over the place. So you deal with a situation like that when you have a client that comes to you, wants your help to go to the school system to advocate for their child, but dad's like no, we don't need it, we're fine, the kid's fine. What happens? What do you?

Speaker 2:

do. I've had that discussion with colleagues. I would not. If there's that much of a disagreement, I'm not going to. I'm not going to take that case. I would not, I wouldn't. Somebody that I know who is a special ed lawyer said well, ask them to show you who has decision-making authority as far as education is concerned.

Speaker 1:

It's like a divorced family.

Speaker 2:

Yeah, right, if it's a divorced family.

Speaker 1:

Mom's all for it, but dad's like no, he's fine. So then the lawyer's recommending you find out which one of those parents has the authority to make the decision for the education of the child.

Speaker 2:

Right in a divorce. This is one of my special ed lawyer who's local to me, said that. Honestly, to tell you the truth, I did agree with that advice. I don't now because I just I think that even if something is on paper I don't, I I wouldn't take the case. I did have a phone call from a mother where the parents they were not divorced and I think they lived under the same roof. But she agreed and he didn't, and it turned out that it was.

Speaker 2:

It was during the summer and I actually I was not feeling well, I had just broken my toe and I was in a lot of pain and it was the. I just had to take a few days off. So I wasn't taking that case anyway. And I said you know what, I'm not taking that case because they're going to everything was an argument in terms of that family I'm'm not. If I see any fissures, any kind of any trouble on the horizon, I'm not going to take the case. Another thing as well is if someone says to me well, my, you know, I want to hire you, but my mother is paying for my mother is paying your fee, so she wants to know everything. No, you know what? No, I mean family. Well, families and money get you know, money is a very it's a hot issue. Unless somebody signed a release, a time limited release, saying I authorized my mother, jane Smith, to have information. I'm not taking that either. I won't.

Speaker 1:

But you have to be careful about HIPAA violations too. You can't be telling information that's actually.

Speaker 2:

it's it's HIPAA's counterpart in education is FERPA. So is that? But it's the. That's what it is. I, you know I would, I would sign it, but quite frankly, I'm not. I don't want to have that, I don't want to do that.

Speaker 1:

A family cannot be on the same page as two. Bottom line it's what is in the best interest of the child. It's not about dad agreeing or not agreeing, or mom agreeing or not agreeing. It's like, whoa, this is our child and we need to do what's best for the child and maybe I don't think there is anything wrong. But at least let's explore you know what I mean. Like, let's give the child the benefit that don't figure out what's going on here. So you're right, it's not worth the time you're going to have to invest in managing their disagreements or their disruption to try to figure this out for the family, for the child.

Speaker 2:

It's not worth it. No, I'm not, I'm not, and right, because there is enough. It's enough of a stressor to deal with the district and in certain cases Now one of my colleagues, who is I respect more than I can say, mentions, talks about that when we have all of our ducks, have the data on our side, obviously you know it's going. Things are going to go much better. With that said and I said this to her and I had disagreed with her with that said personalities are personalities and if you have someone who's an administrator, who is just argumentative or is having a bad day, it can still be a stressful meeting.

Speaker 1:

I, as a parent, have never, I have never found it smooth sailing, never never, especially when you're saying to an administrator but by federal law you're required to provide these services and the ministry is going that's great, but we don't have money in our budget, the school system doesn't give us money, and so then it comes down to money.

Speaker 2:

Sometimes, quite honestly, it always comes down, always, always money, always money, and they get agitated because oh, here we go, now we have to provide this for this child.

Speaker 1:

We don't have the money. Where am I supposed to pull the money? Who am I pulling the money from? And then no wonder they get argumentative sometimes. And I will tell you.

Speaker 1:

My sister told me that years ago she taught kindergarten and she had a child in her class and she clearly realized there was some issues. And there was an IEP meeting and my sister was heading into the IEP meeting and the assistant principal called her over and said if the parent doesn't mention that they want these services, don't tell them about them, because they didn't want to have to pay. And my sister was appalled because here she has a child at home with special needs and she's being told don't tell the parent. And of course she went and told the parent on the slide, like you need to ask for these things. But I mean that's a reality of what happens. A lot of times the school's like if they don't know, we're not telling them because they don't have the money, they don't want to have to provide the services. So that's why people find somebody like you and I mean there are a couple of special advocates, special needs advocates. I follow on Facebook as well, or Instagram, and it's the same stories, same stories, and they're doing this. They're saying the same things.

Speaker 1:

Like you're saying, you have rights, your child has rights. You have to know and you have to ask for these rights and you can take you can't take no financial all the time. You can appeal, you can fight back. You don't have to settle right, you can. You have to know what you don't know, and so that's where someone like you comes in. But let me ask you this so you're private, so people have to pay you out of pocket to do this for them. Do you ever get people going? Man, you're expensive, or I can't afford that. Or what do you say when they come? Because I hear that too with some of my services. But what's your response to that?

Speaker 2:

During COVID, someone said to me we're in the middle of COVID, you should do this for free, Good, one Good. And I said, well, I said this is a service and I work very hard for this. And I said there is a public agency that I referred her to, the public agency that we have locally that and even they're not for free, because if you, if one of their advocates, goes to a meeting with you, they charge you. It's a nominal fee, but they do charge you. And I said, well, I said that is always a choice. I said, or going onto Facebook, or that's, that's always a choice. And she was very, she said all, but she was on a roll. All these services should be for free. For for people who say I can't afford you, I I say I don't do any kind of sales pitch. I say, yeah, I commiserate, and I say, yes, life, life is expensive. I said, but I'm here if you change your mind, and so that's really your response.

Speaker 2:

Yeah, that's my response.

Speaker 1:

They're not only buying your services. They're buying your years of experience, knowledge, and that is where the power is, because you know how to navigate the system, you know the ins and outs, you know the laws, you know what they don't know. So you're educating the parent as well as sometimes educating the school system at the same time. So they're buying years and years and years and years of expertise, and there's value in that.

Speaker 1:

And I do the same thing. People like I have one lady. I did public speaking around the country years ago and I had one lady said to me wow, that's, you know, I really can't afford your fee. I'll let you stay in my house for free and we'll do this. I said you know what I appreciate all that. Maybe you could partner with another agency and split my fee, or maybe you can just put me on reserve, maybe for next year when you can, you know, contact me again next year when you can afford to have me come and speak to your audience or whatever. And I'm not apologetic, but you know, I know the value of my expertise and what I have to offer, and the same thing with you. And sometimes parents can pay for it for you and sometimes they can't, and then you know you're nice enough to refer them to a public agency that can help them no-transcript, gently throwing it in, and they get very annoyed.

Speaker 1:

Yes, because the whole point of this is, hopefully, when you're going to work on behalf of a family and a child with a school system, to work on behalf of a family and a child with a school system, it's not adversarial, it's, like I said, team approach. Okay, we've got it. The best interest of this child are what we all should be focusing on and make sure they get the services they need and everything that they need is provided for them. Not a problem. But that's not reality A lot of the time, a lot of times, going into a situation where it is contentious, it is adversarial, the school does not want to have to pay for another day gone thing they don't have the money for, and then you're coming in as an advocate saying, oh yes, you do, because, uh, let me, let me get this straight.

Speaker 1:

Just wasn't that federal law? I mean, correct me if I'm wrong but didn't they say? And so sometimes you have to sugarcoat it and kind of, you know, get your point across. But it's not always happy, happy for everybody. It's not always like win, win. Sometimes it's like you're bucking the system and they don't like it, but they have to provide. This is the way it is, so to have somebody with your skills, your knowledge, your background that could go to the parents. Basically sit back, I've got this.

Speaker 2:

I mean that's priceless.

Speaker 1:

You can't put a price on that. You really can't. Because what you do like I said in the very beginning and to kind of wrap this all back around the beginning is what you do is going to have an impact on that child for life for life. I mean, I see it with my sister's son and I see all the advocacy she's done with him and all the things she's had to do for him, and it impacts not only the family, the parents, but that child. It can make a difference in that child's entire life. And that's powerful, that's just powerful and it's worth every penny you charge as far as I'm concerned, because what are they going to do otherwise? Imagine if they don't have services like that and their child doesn't get their needs met. Imagine the lifelong impact of that.

Speaker 2:

You know what? Here's my response to that. We have, and you're probably aware we have a real literacy crisis in America right now and these children, they cannot read and unfortunately, the undiagnosed dyslexic students grow into dyslexic adults and many of them are in jail. Yeah, With the comorbidities of ADHD and dyslexia, they're in jail, that's what I'm talking about.

Speaker 1:

They they maybe were not diagnosed, they didn't have anybody he knew, maybe their parents didn't know to advocate for them or didn't realize even had an issue, that they had dyslexia. You know, maybe it wasn't diagnosed till later in life and there's a lifelong impact that happened. That's why I say it's like god bless you for the work that you do, for these, and I know you have wonderful success stories. I'm sure people need to find you. Tell us again where they can find you on Facebook at special needs pro.

Speaker 2:

At special needs pro and on my website wwwspecialneedspronet.

Speaker 1:

Okay, and then they can find you on threads under special needs program Special needs pro yeah, under special needs pro Okay. Well, nancy, thank you so much for being here today. I'm just, I'm pumped for what you do. Thank you Personally. Get that, I totally get this. I've been, you've been on the teacher's side and been on the parent's side, and you know I, I totally get it. And so I think what you do is so valuable and just keep fighting. I mean just keep fighting and advocating for these kids and these families, because what you do is powerful. Thank you, I will. I will.

Speaker 2:

Awesome. Good talking to you Same here. Thank you so much.

Speaker 1:

Thank you for tuning in to today's episode of Common Sense Parenting with Pam. I hope you enjoyed the episode and, if you did, please leave a review. That helps other parents find us, and if you have friends who also have children and could use some parenting tips, feel free to share this. I would really appreciate it, and you know I love to hear from you, so you can always find me on my socials. And until then, remember, hug and love your babies.