Other People's Words

Interview w/ Heather Sedlock of Advocates Against Fraud in Advocacy

Posted in Uncategorized by Tera on August 29, 2010

This is a transcript of Autism Women’s Network’s interview with Heather Sedlock of Advcoates Againt Fraud in Advocacy (AAFA)


Sharon daVanport: Good afternoon, everyone, and welcome to AWN radio on Blogtalk. I am your host, Sharon daVanport, and today is Saturday, August 21. We are broadcasting live from the beautiful Midwest in the United States, and joining me as co-host, Tricia Kenney. Good afternoon, Tricia.

Tricia Kenney: Hi. How are you doing, Sharon?

Sharon daVanport: I’m doing well. Thank you. It’s going to be another hot day here in the Midwest, isn’t it, Tricia? Scorching. [Laughter]

Tricia Kenney: I know. We were hoping for a little bit of a break; hoping things would cool down. But no.

Sharon daVanport: Of course not. [Laughter]

Tricia Kenney: It’s just going to be like this till Christmas.

Sharon daVanport: Aw, probably. I feel like I’m back home in Texas. I was born and raised in Texas, and you’d think I’d be used to this. But I’ve lived here in the Midwest for 15 years now, and I tell you, I got spoiled for a while. And now the weather has just decided to really change. So, oh well.

Anyway, I wanted to welcome everyone to the show today, if you’re listening. Thank you, everyone in the chat room and everyone who’s on the switchboard listening in. We have a great show today. We have Heather Sedlock, who started the organization that she’s going to be talking about today: AAFA (Advocates Against Fraud in Advocacy.) I won’t say much about it, because I want Heather to be able to explain to us what it’s all about and what she does.

But first, Tricia and I wanted to thank everyone in the autism community who has been really pulling for us and supporting us over in the Pepsi Refresh Everything grant contest. It has been a crazy busy month, has it not, TriciaK? [Laughter]

Tricia Kenney: Extremely so. And we’re just plugging in every day, and so grateful that so many people are supporting us. We’ve gone on Facebook and Twitter, and we just have so many people pulling for us and it’s really great. We can vote every day, and everybody out there can vote every day as long as you’re in the US.

Sharon daVanport: Right. And what I think is so great is what people keep reminding us of, and it’s really been encouraging. Rignt now we’re ranked 60th. Now, if you’re in the top 100 at the end of the month, then we automatically qualify to be carried over to the next month to keep competing, as long as you’re in the top 100. And everyone’s like: “Do you know how huge that is?”

Here, little old AWN—we just went online, what? Seven months ago. We’re just brand-new, and here we are, right now we’re ranked number 60. I think [when] we started out, we came in at number 85 or 83, something like that. We’re slowly moving up, and we’ve only got 10 days left in the contest, so we just want to thank everyone. We’ve had hundreds and hundreds of reposts on this link to the Pepsi page on Facebook and Twitter. I’m just overwhelmed, and just want to thank everyone so much for helping us network this.

We’re going to keep plugging away. Even if we have to be in the contest in September, we’re just going to keep going for it. And we want to thank Pepsi so much for giving us this opportunity, and the communities across the United States this opportunity to go for a grant this way—help us get started and get established. It’s just wonderful. It is. And it’s nice when any corporation will go ahead and put forth the funds to do something like this. I know there are several out there, but very few that let you get in there if you’re not already a 501c3, which is what we’re planning to do with part of the grant money, if we get into the top ten. Which I’m pretty sure we will—if not this month, then at least next month.

Sharon daVanport: That’s right. So, again, thank you to everyone and remember our website to go over and vote for us daily at the Pepsi Refresh contest. Leave a comment, too. We’ve just had some awesome comments from across the United States: people leaving just wonderful messages and encouraging. So thank you for that, everyone. And make sure that when you go over there, leave a message. We’d love to hear from you.

So I guess we should bring Heather on then, Tricia. And get started with the show.

Tricia Kenney: Right. All right. Here’s Heather Sedlock. Hi, Heather.

Heather Sedlock: Hi, Tricia and Sharon.

Tricia Kenney: How are you today?

Sharon daVanport: How are you doing today, Heather?

Heather Sedlock: Not too good, actually. I’m sorry. I have a [unknown] cold. I’m trying not to cough too much.

Sharon daVanport: Oh, I’m sorry.

Tricia Kenney: Aww.

Sharon daVanport: Aww.

Tricia Kenney: Sorry.

Sharon daVanport: Sorry to hear that. Well, thank you for joining us just the same, even though you ended up not feeling too well for today. We’re just excited for you to be able to tell our listeners about your organization that you started. I tell you, it is very much needed in our community, where we service individuals with disabilities. And in the autism community, we have seen over the past year a couple situations of advocates not really doing what they purport to do. So why don’t you tell us about AAFA—what its mission is, Heather, to begin with?

Heather Sedlock: Okay. The mission of AAFA is to protect and help families in need of advocacy by reporting on individuals and organizations that may or nay not be advocates. There’s two sides to AAFA. One side is where we investigate cases where, say, a parent hired someone and that someone was supposed to go to the school and fight for their children under IEP law and the IDEA law and all that. They paid him a bunch of money; he doesn’t appear. They could come to us and we could investigate. We have no legal authority, but we could get the word out there so that no other parent would go and use his services—risk being defrauded.

The other side of it is there’s people out there that want money from organizations for help: “I have an autistic child; I need help with transportation costs to and from a special school” or what have you, but they really don’t have an autistic child at all. And they’re using the money on drugs, on their cable TV, whatever it may be.

Tricia Kenney: Right.

Sharon daVanport: Oh.

Heather Sedlock: They’re defrauding organizations that are out there trying to do good work. That’s really sad, but they’re out there.

Sharon daVanport: Yes.

Tricia Kenney: Now, if a parent finds themselves in a situation where they are seeking the help of an advocate, before they even engage with that advocate, could they just call or send you a message or something and have you check out the advocate beforehand?

Heather Sedlock: Yes. We do do that. We’ll do a search in our database to see if that person is [unknown]. If anyone’s ever reported them for anything, that individual requesting the search, we would tell them: “Okay, ten people have said that they were dissatisfied with their services” or “There’s nothing in our databases about them, but here’s what we found out about that person.”

Parents can do a lot of common sense things, as well. The first step when you’re thinking about using an advocate for services is to ask them for their résumé and their curriculum vitae, it’s called: where they went to school for how to be an advocate. You don’t have to have a degree, but there’s certain certification programs they might’ve gone through. Different states offer an online course that, in order to be a layperson advocate in their special education system, they say you have to go through this. I know Oklahoma is that way. On their State Department of Health website, you have to go through their layperson advocate curriculum online.

Tricia Kenney: And that’s in order to present yourself as an advocte in an IEP or any other situation?

Heather Sedlock: Right. An ARD, IEP meeting—any kind of due process-related hearing, things like that. Before they can be a layperson advocate and speak on your behalf, they have to have certain training. A lot of states don’t have that requirement. It could be Joe Blow from down the street who has no training whatsoever, but wants to start helping people. So he starts learning the ins and outs, and that’s fine, too.

It’s the people that are doing it for money that I worry about, who don’t have the training, who charge upwards of $300 just to look at your case. I’ve never heard of an upstanding layperson advocate who is a professional layperson advocate that charges for their services that has intake fees that high of an amount, just to look at your case.

Tricia Kenney: Um-hm.

Heather Sedlock: So that’s a red flag to me.

Tricia Kenney: Right. And we need to remind parents as well that an advocate is not a lawyer.

Heather Sedlock: Exactly.

Tricia Kenney: Because there’s a huge difference. And if they’re trying to present themselves as a lawyer, or asking the school to do things or yourself to do things in a legal context, that might be a big red flag for parents.

Heather Sedlock: Exactly. If you’re asking your layperson for advice—”What do you think I should do?”—they’re not allowed to give you legal advice. That’s one thing that separates a paralegal from a lawyer, too. Paralegals aren’t allowed to give legal advice, except in certain circumstances, usually relating to real estate, I think.

But a layperson advocate can’t give legal advice. They can tell you what your county’s laws are and let you decide how to proceed, but they can’t advise you one way or the other.

Tricia Kenney: Right, right.

Heather Sedlock: So if they start saying things like that, like: “If I were you, I would do this or that”—it depends on how it’s phrased—that is how they do things, because they know what to do. So you would follow the steps. But they shouldn’t say: “Oh, if I were you, I wouldn’t settle. I would go all the way through a due process hearing and let’s kick their butts,” or something, that would be a red flag to me.

Tricia Kenney: Um-hm.

Sharon daVanport: And, Heather, if you could also explain to our listeners some of the different ways that some fraudulent individuals who want to prey upon the autism community or the disabilities community, what some of the avenues are that they use. I know, for instance, that you’ll see a lot of these people try to get on your pages on networking sites. I know that I’ve had a couple experiences where people have tried to get on my Facebook page and then, eventually, we find out who they really are.

Or I’ve had to block certain people who have started Facebook groups, and you find out that they’re really not legitimately concerned with autistics, because they end up attacking autistics. They’re really not doing what they purport to do. Can you tell our listeners and give them some things to look out for when it comes to watching some of the networking sites and people who cliam to be advocates?

Heather Sedlock: Okay. For Facebook, one of the things you’ll see is it’s a relatively new profile. You’ll go look and there’s not a whole lot of activity, but there’s a—

[Heather’s call is dropped]

Tricia Kenney: I[‘ll try to?] get her back, and you can maybe tell people about b-Calm Sound or something for a second. I’ll be right back.

Sharon daVanport: Sure. Yeah. Okay, thanks, Tricia. All right, everyone. While Tricia tries to get Heather back, it looks like she’s…I don’t know. I guess the call got dropped. It looks like we have a question in the chat room: “What agency do you report dishonest advocates to?” That’s a great question. That’s something I do have down to ask Heather, so as soon as Tricia gets her back on the line, we will go ahead and make sure we ask her that.

I wanted to remind everybody, too, while we have a couple minutes here, about our contests that we have going on monthly. We were going to mention that at the end of the show, but we’ll go ahead and mention it now. I want to remind everyone that we have two contests. We take turns every other month. Our sponsors for these contests are LifePROTEKT and b-Calm Sound. We do have a giveaway this month through LifePROTEKT, and we are going to draw a name this next Saturday for one of our lucky listeners to win a GPS device locator with one year of service from LifePROTEKT.

Such an awesome, great giveaway, and we have had just an overwhelming response to this contest. What we require is that you just tell us your story by e-mailing us at info AT autismwomensnetwork DOT org. Just e-mail us your story and we put you in for the contest. We’re going to have Nadia and Tanya Bloom on as guests next Saturday, and they are actually going to announce the lucky listener who is going to win the gift from LifePROTEKT.

And you guys may remember Nadia as the girl who about four months ago went missing. She was wandering and she went missing, actually, when she was out playing. She got lost in the woods in a swamp area near her home in Florida for four days. They’re going to be on to tell their story on AWN radio. [To Tricia] Are you back now, Tricia?

Tricia Kenney: Yes, we’re back.

Sharon daVanport: Okay. All right. I just wanted to finish up, though, and tell about b-Calm Sound. I was telling about the sponsors, so since we’re doing that, I just want to go ahead and finish that up. Secondly, our sencond sponsor is b-Calm Sound. They actually sponsor our giveaways for their Audio Sedation system. They give away MP3 soundtracks, and they are the leaders in Audio Sedation technology—just an awesome, awesome organization. So if you do want to go over and check them out, the links are on our webpage at autismwomensnetwork.org. So check them out. Well, welcome back, Heather.

Heather Sedlock: Thank you. Sorry about that.

Sharon daVanport: [Laughter] That’s okay.

Heather Sedlock: [Unknown] so we [lose?] power.

Sharon daVanport: Oh, okay. Oh, my goodness. Yeah, this heatwave has just been relentless for the past month, I tell you. We had a great question in the chat room that if, I guess we could start there, now that you’re back. I have to be honest: I can’t remember where you were when we got cut off. [Laughter] But the question that came in was: “What agency do you report dishonest advocates to?” When you say “database,” you check your database. I guess that’s what they’re referring to. Where do people like me or anyone report dishonest advocates to, and where do you check this out?

Heather Sedlock: You can do the report and see what we have reported on at www.advocacyfraud.org That is our website, where you can read more about us and what we do.

Tricia Kenney: Is there a governing agency anywhere among advocates?

Heather Sedlock: No, there’s not. There was one; it has become defunct. As far as I know, there’s not a government agency that oversees it.

Sharon daVanport: That’s terrible.

Heather Sedlock: A lot of the frauds are being done over the computer. So what we can do is report it to what’s called the IC3 website, which is the Internet Crime Complaint Center, the FBI arm for Internet crime.

Sharon daVanport: So is that who they report it to, then, Heather? Like, the question in the chat room: Would they want to report it to that agency, then?

Heather Sedlock: We would send them a link. It depends on their claim. We have gotten quite a few of: “This guy’s harassing us,” and you look. And unfortunately, what it is is it’s a disagreement of opinion. You wouldn’t report that. But if you were defrauded out of money, then yes. You would go on to the IC3 website. We would send you a link to it, and you would report it directly to the FBI.

Sharon daVanport: Okay. Wow. When say you check your database, what do you mean by that? Where do you check to do your work?

Heather Sedlock: That is the database my husband created. It’s something AAFA has created just to keep track of the claims and the records that have come through: the phone numbers associated with various individuals, their addresses, what state they’re operating out of. We also contact local authorities. In certain circumstances, there might need be to contact our local police station. We had one case where we contacted the FBI, the local police where that person was operating out of, and my local police, because he went after me.

It depends on the circumstances, but the database itself is in our website’s server. It’s basically just a record of all the information we’ve had given to us by various individuals. It’s hacker-proof, meaning if you gave us information and you filled out this form, that information on the form goes into our database for us to look at. No one else would be able to see it—not yet, anyway. He’s trying to find a way to make the database searchable for users when they come on-site, but make it hacker-proof. We don’t want just anybody to come on and see that Sue Smith reported John Doe and get John Doe mad at Sue Smith.

Tricia Kenney: Right.

Sharon daVanport: They’re asking in the chat room: What about the attorney general’s office in your state? Can you report to them? What can be done that way?

Heather Sedlock: You can, but they will generally tell you that: “So sad. Buyer beware.”

Tricia Kenney: Yeah.

Heather Sedlock: That’s what a lot of parents have been told.

Tricia Kenney: Right, because there aren’t any agencies that are specifically made for this.

Heather Sedlock: You could do a private claim in small claims or the larger claims court, depending on the size of the fraud, but that’s generally what they tell you to do: to go to small claims court. The tricky part about that is you have to have the person’s real name and address, and a lot of people protect their identity.

Sharon daVanport: Right. They give you P.O. Boxes. You know what’s scary to me, Heather? Maybe you can speak a little bit to this, because I see more of this happening than just the out-and-out fraud and ripping people off. You see a lot of that, but what’s even more scary to me on a personal level, and what I see most people have to deal with are people who aren’t out-and-out fraudulent in a financial way, but draining in an emotional way.

They’re out there saying: “Oh, we’re an advocate! We’re an organization that advocates!” but they really don’t do anything. They just post a lot of alerts or a lot of different happenings going on. They just suck you in and make you think: “Oh, they’re this huge advocacy organization,” and then you try to get involved—

Heather Sedlock: [What do they really do?]

Sharon daVanport: Yeah, what do they really do? They do nothing, except just saying things. These parents are really drawn to this person, because they’re desperate, they want advocates. They want some answers, and to me, that’s even more scary.

Heather Sedlock: [Unknown] the difference in advocates. For AAFA, we defined our own, because we had to differentiate between those different types of advocates. First, there’s a layperson advocate, and that is a person that will hold your hand through the process of getting your child services via the school.

Then there’s an awareness advocate, and that was something I did a lot of prior to my recent health problem. That is where you go out and you make a bunch of noise for a particular cause and get awareness raised about autism, or about cerebral palsy or about whatever cause is dear to your heart. I think those organizations, they call themselves advocates, and what they really are are awareness advocates. All they’re doing is bringing attention to their plight, but nothing actually gets done.

Sharon daVanport: Yeah. And I think it’s important for—

Tricia Kenney: [Unknown] the education to back up any sort of real hands-on advocacy needs.

Heather Sedlock: Right. Maybe they could still have the connection to other organizations that have the actual program, which actually outreach into the community and set up their workshops or [help?] in-need families. Whatever it may be.

Sharon daVanport: Right.

Heather Sedlock: I know of one organization that raised a lot of money and they had the connection. They dispersed [unknown] at the end of the fiscal year to [unknown] the organizations across the nation. That’s one way of doing it, as an awareness advocacy group. That is what you would hope to see.

Tricia Kenney: Um-hm.

Sharon daVanport: Right.

Heather Sedlock: But there are others where all they do is sign a bunch of petitions, and nobody gets the petition because petitions don’t change law. They may get a certain senator or a certain representative to look at current legislation: “Here are these families. We’re all voters in your district. We want you to support autism legislation.” Yeah, he’s going to look and say: “Oh! Okay, well let me go look at this bill.” It starts there, but it doesn’t [get created?] that way.

Sharon daVanport: So there’s a huge, importance in knowing if somebody is really an advocate, or an information-disperser advocate. So there are some difference there. And AWN has had a lot of people contacting us for those kinds of frustrations. They get involved with an organization, thinking: “Oh, they’re advocates! They’re doing all this stuff!” But then they spend all this time and come to find out that they’re not. So it was very draining to them, because families in the disabilities community, we’re busy families. We don’t have a lot of time. We need to know where our time is going. It’s very important to us.

Tricia Kenney: I think once parents get into the special needs community, we don’t have a lot of information; we don’t know the laws; we don’t know very much about Wrightslaw or IDEA or anything like that. And when people come around using a lot of the terminology that we don’t yet have a grasp on, we tend to trust in that person and hope that they can help us through the process.

But it’s so foreign to us. The first IEP you go into, you’re just sitting there like a deer in headlights. Everything the teachers and therapist and administrators are talking about, you have absolutely no idea. And you have no idea how much that’s going to affect your child’s education and the ramifications of it. So people are always like: “Get an advocate to go with you. Get an advocate, get an advocate.” And it’s really tough for parents if you’re not well-versed in that community with advocates. Who do you turn to?

Heather Sedlock: And that’s what AAFA hopes to be. What we’re hoping to become is an agency where if a parent is new and they don’t know: “What’s an ARP? What’s an ARD? What’s an IEP? What are all these acronyms? This is alphabet soup here! It’s Greek to me. I need an advocate but don’t know who to turn to.” We’ll go and have a list of pages that have pre-screened advocates across the nation.

Tricia Kenney: That’s awesome.

Heather Sedlock: They’re pre-screened by AAFA. Their credentials have been checked: if they say they went to Pennsylvania State University and took this course, Pennsylvania State University has verified that, yes, they’ve taken this course and they have passed it. Like I said, they’ve been pre-screened. That is the future; we don’t do that quite yet. We’re getting there, but we need the public’s help.

I know how embarrassing it is for a lot of parents who have been duped to come forward and say: “I gave them $1,000 and I’m sitting here on unemployment, and I expected XYZ for that. I didn’t get anything but a few phone calls. I guess I got something for it.” No, that’s not what you were promised, though.

Tricia Kenney: Right.

Heather Sedlock: Come forward, tell us your story. Tell us what happened. We’ll help get the word out there so it doesn’t happen to another parent. That’s the worst thing. One of the…I guess you could call it the founding case. What caused me to jumpstart this website. Even though I no longer publish stories about it, it’s gone up to 150 families [who] have come forward.

Tricia Kenney: Wow.

Heather Sedlock: And some of them dealt with him even after I as a reporter reported on him. They bought into his ads of: “Oh, I’m being persecuted. She worked for the state school board and that’s why she doesn’t like me. That’s why she’s doing this.” I don’t work for any school board; I don’t work on any education level that way. I’m a parent of two special needs kids, and I’m a reporter. That is it. But he fed them hook, line and sinker. They know me.

And that’s the other thing. If your advocate’s telling you: “I have a reputation,” go to the school and find out what it really is. Some of them will tell you: “I’m going to kick butt. We’re going to go down there; we’re going to make them spend their money and fight to get your services. We’ll let them spend up their legislative dollars in defending against this and that.” That’s a lot of frivolous time-wasting things that does not help your child.

Tricia Kenney: So what are some of the consequences of dealing with somebody like that? What sort of outcomes could happen to your child if you go along with something like that?

Heather Sedlock: Okay. The schools are required to do certain things, regardless of whether they’re dealing with someone they like or not. But there are certain things that they could do that they’re not required to do, such as extra time in the sensory room when your child’s having a meltdown. If your school has a sensory room, they could write it in their IEP that an aide will come and take your child to the sensory room an extra ten minutes here or there when necessary, because they’re having a bad day. They don’t have to have that in the IEP. They just have the regular intervals of time in the sensory room. That’s all that’s legally required in some states.

But if you come in with an advocate who is abrasive and aggressive and foul-mouthed, as some of these people get, they won’t do things like that. They will make it even more challenging for you to get the services. For instance, in one case, the woman had negotiations. She was getting to the point where the school was offering what her son needed. All she had to do was accept it, and was getting in there and fixing things.

The unfortunate incident happened and this guy set on her, and she ended up having to go to court hearings, hiring an attorney. She’s a single mom; she has two special needs kids out of three. She had to take time off work. She couldn’t afford to pay this attorney, but she had to because this obnoxious guy came in, ruined her relationship with the school personnel. The school personnel treated her other children differently. It really created a bunch of drama.

Tricia Kenney: Right.

Heather Sedlock: You would think that the school personnel would be professional enough not to let it get to them, but that rarely ever happens.

Tricia Kenney: Yeah.

Heather Sedlock: Because if you have some guy calling you an a-hole on the phone, well, you’re going to take that personally. And you’re going to look at the parent who brought him [unknown] like: “What are you doing? Why’d you bring this person in? I thought we were getting along. If you’re dumb enough to [unknown,] now we’re going to put a stop to everything.”

Tricia Kenney: Right. And IEPs and any plans that you have with the school are really important. They’re not just going to a parent-teacher conference. It’s your child’s life; it’s your child’s education, and it’s your child’s well-being. You’re putting your child in the hands of those people every day.

Heather Sedlock: For instance, recently I went to my youngest son—I call him B-boy online. I went to his IEP meeting for the year. It wasn’t a full-on IEP meeting because he already has an IEP in place and it wasn’t up for review yet. But I met with the woman in charge of it, and she was basically telling me: “Yes, we’re going to implement everything here at the new school. But you gave us [unknown] for a one-on-one aide. We don’t have one yet for him, because we have to hire them, train them, get them acclimated to our system and then [she?] can begin working with your son. That’s going to take us longer than what [the law gives us?]”

I went ahead and said: “Yeah, sure. Take your extra time,” because it’s a month. In the end, that’s going to help my son more, because they took the time to get a quality person in there than if they just had to hurry up within the two weeks and implement some stranger off the street because they didn’t have the time to work, because I’m going to be a jerk about it. And my advocate’s like: “No. You’re going to do it now, and you’re going to do it this way,” and aggressively harasses them. There’s ways of doing things and getting what you want, being strong and firm without being aggressive and abusive.

Tricia Kenney: And it’s really important [that] parents figure this out eventually, if not right away, along with the diagnosis, doctors and therapists and specialists. It is overwhelming and it’s a lot of things to take in. But there is more work to do. You do need to read up on your rights, your child’s rights, and you do need to know what your state offers. There is learning that needs to be done, because the better prepared you are, the better you’ll be able to gauge what kind of advocacy you would need, or if you even need any advocacy.

Heather Sedlock: Or it can teach you how to advocate for yourself, or for your child.

Tricia Kenney: And a good advocate, I think, should teach you how to become self-sufficient in that arena.

Heather Sedlock: Yes. I think that the ultimate goal of a good advocate is to get the services for your child that your child needs for academic success, but at the same time training you. So that in the future, if there’s ever a problem again, you can advocate for your child.

Tricia Kenney: Right. And that’s the safest bet. Also, you don’t have to go with the first advocate you meet.

Heather Sedlock: That’s true, too. A lot of people are in a rush. They’re like: “Well, I have this IEP meeting in seven days, and I don’t know what I’m doing. I want an advocate to come sit in so they can hear what’s being said and see if I’m wrong. I’m going to take this first one, because I need to give notice to these people that I want them to be there. [It was] seven days away; now it’s only four days away.” There’s always time. There’s always time to check into who you’re bringing to that meeting.

Tricia Kenney: Exactly. And just be very aware that it is important. This is your child’s education, your child’s school life. It can effect things years down the road.

Heather Sedlock: Right. When I went to that meeting with B-boy, I mentioned my oldest son, T, and she’s like: “Oh, I remember T.” She had a tense body pose, because my oldest son was more difficult to get services for, and I did have to become warrior mom, in a sense, to get things. I didn’t get abusive and I didn’t get overly aggressive, but I wouldn’t back down.

Tricia Kenney: Right.

Heather Sedlock: And she remembered that. She’s like: “Oh, yeah. Okay. That’s right.”

Tricia Kenney: [Laughter]

Heather Sedlock: “You’re not one to mess with. Got it.” I think you want that level of participation, but you want to be a lot nice. You don’t want to scare them, but you want them to know that they can’t jerk you around. They’re a business, more than anything else. They’re in the business of educating your child. At the same time, because it’s an expensive business, they need to cut costs. One way of doing that is to deny services to children that need them.

Tricia Kenney: Yeah.

Heather Sedlock: To say: “Okay, well, your child’s entitled to extra reading help. But you know what? He’s on grade level, so let’s just let it slide.” Well, you have to decide: Is that okay or not? Okay, your child’s on grade level, but if he’s on grade level with the help three times a week and you remove the help three times a week, is he going to fall behind?

Tricia Kenney: Right.

Heather Sedlock: So you have to gauge that for yourself and make a decision and not back down. But that’s one way of saving money, is saying: “Oh, no, look. Your child’s achieving; he doesn’t need this extra help.” Well, that’s one less staff person they have to pay time for.

Sharon daVanport: Heather, for the listeners out there, can you also touch a little bit on what kinds of questions we want to ask an advocate? Say we’re over on Facebook or a networking site. That’s where we find a lot of great information, is word of mouth from our friends and stuff, and people we know.

Heather Sedlock: [Unknown] your advocate is to find someone that lives in your area. It doesn’t necessarily have to be your school district, but in your state. The federal law is the federal law, but each state decides it differently, and has different programs and different services that are paid by state taxes. So it’s best to go with someone that’s in your state. Yes, someone can advocate over the phone from anywhere, but nothing beats being able to be there in person, and knowing that state in and out.

Tricia Kenney: Um-hm.

Sharon daVanport: Um-hm.

Heather Sedlock: That’s the first thing. And ask your friends, as you go into the parent support groups. There’s a lot of advocates that join them to get clients, but you’ll see the parents, and they’ll be obvious parents. They’re the ones pulling out their hair and gnashing their teeth.

Tricia Kenney: [Laughter]

Sharon daVanport: Right.

Heather Sedlock: So go up to them and say: “Okay, have you ever needed an advocate? Who did you use? What was your experience with them?” You can get a couple of names, and then when you talk to that person directly, that advocate, ask them for a list of references. If they tell you: “Oh, I would give you one, but there’s a law called [unknown]. That prevents me from telling you their names and information, so I can’t give you that,” that is baloney. Because a parent can sign an [unknown] waiver and say: “Yes, you may use my name as a reference.” It’s the child’s name that’s protected—not the parent’s.

Sharon daVanport: That’s good to know, Heather. I’m glad you’re explaining this. I know that the situation that you were referring to earlier, the one that inspired you to start your organization…I know the individual you’re talking about. Even though we agreed not to say it on the air, they can always go and find this information through your informational sources.

But it’s really good that you’re touching on this, because it’s really important. You won’t even have to ask a legitimate advocate for references. The’re going to offer that to you up front. They’re going to offer it to you. One thing, though, that we found out in dealing with this particular individual, is oftentimes some of the really manipulative or scandalous ones, they will have people that are their friends that they’ve set up to pretend like they advocated for them. They could use false references.

So what can a parent do in that situation? Do you want to ask for the school districts that they’ve advocated in, and maybe ask the school: “Do you know this person? Have they really been at meetings?” Would you go about it that way?

Heather Sedlock: [I mentioned] that earlier. Especially because a lot of the boasting advocates that are scandalous and fraudulent, they boast a lot about: “Oh, I’ve been to that school before. They hate me. You should use me. I can really kick their butt and get XYZ. Your son will have a throne in the cafeteria,” and promise you the moon.

Sharon daVanport: Ugh.

Heather Sedlock: You know what I mean.

Sharon daVanport: My goodness, yeah.

Heather Sedlock: Everything that a special needs parent wants to hear, they’ll tell them. But, yeah, go ahead. Say: “Okay, would you mind if I call that school?” “Oh, well, I wouldn’t trust them to give you…’cause they really hate me.” “I just want to hear their side.” Because, remember, there’s always three sides to a story: his side, her side and the truth.

Tricia Kenney: Right.

Heather Sedlock: And as an independent individual, you can hear this advocate’s side, hear the school’s side, and decide for yourself where that middle ground is. If the school says: “Well, we were in an ARD talk and this person began swearing at me and we had to hang up the phone,” that’s [unknown[. That’ll be in the records.

Sharon daVanport: Right.

Heather Sedlock: And you can go and ask the advocate: “Hey, do you mind if I contact this parent who was involved in the ARD where they kicked you off the phone?” And guaranteed, he or she will be like: “No,” because [unknown]. It’s a bad thing.

Tricia Kenney: Another good thing is to get a contract.

Heather Sedlock: Yes, in writing. Everything.

Sharon daVanport: What kind of things do you want to ask for in a contract with an advocate, Heather?

Heather Sedlock: There’s two main parts of a contract. You’ve got to make sure there’s what they call quid pro quo. It’s basically tit for tat: “I’m going to give you this money. What are you giving me for that money?” You want to outline it exactly, step by step, what it is they’re being paid to do. If they’re to show up at meetings, have any meetings that are already scheduled listed that they’re to attend. If they’re to make phone calls, list the people they are to call. If they’re to write letters on your behalf, who are they writing the letters to? Why? That’s all [unknown] in the contract.

And: “For this [unknown] amount of work, this is what you’re paying me for. Additional meetings, additional phone calls, additional letters are XYZ per hour.” Have them send you an invoice after a certain set of time. Some people do it monthly; some do it every two weeks; some do it weekly. Have them send an invoice of who they talked to, who they wrote a letter to, who they met with outside of your contact. Advocates will call the school on your behalf, and you may not even be on the phone with them. They should be paid for that, if that’s a service they charge for, if they did the work. But you got to have dates and times of when they called.

So that way, if you get suspicious—that you see Sue from the school, and you mention your advocate calling them, they’re like: “We haven’t heard of that person calling us.” But you’re advocate is telling you: “Oh, I talked to Sue and they said this and that.” “Okay, what time and day did you call Sue?” And show it to Sue, and Sue can say: “No, that person never called me.” Then you can start looking at all the other phone calls. You have a written record of what they say they did.

Tricia Kenney: Can you also put in that contract things like: “You’re not to threaten the school with lawsuits,” or things like that? “No swearing in the meetings?”

Heather Sedlock: Certain behavioral expectations? You can. Personally, it seems a little like: “Why should you have to?” But I know parents who have, because they’ve run amok with an advocate before: threatening lawsuits. If your child [has?] an extra 30 minutes to eat his lunch, because the child takes a very long time to chew because of sensory issues: “I’m going to sue you and I’m going to sue this school and I’m going to get all your money.”

Sharon daVanport: Heather, I think, as a parent of a special needs child, and I myself am on the spectrum. I think I would definitely want something in a contract like that. If you’re going to have someone that’s not really completely morally okay, because they’re taking advantage of you anyway (maybe you’ve gotten involved with someone that you don’t quite yet know). But that’s one good way to weed it out. Maybe if they start seeing that you have certain expectations out of them and you’re asking for these things in a contract…

I think behavioral issues are important. If I want someone representing me, I don’t want them starting war with my children’s school. I want them to be able to be the kind of advocate that can get in there and fwork with the school. So if they have the kind of attitude like: “Oh, I’ll make the school listen to me. I’ll get in there and kick their behind”—you said that earlier, that somebody might say that—you know what? Personally, I don’t want an advocate like that. Now, maybe there’s some parents that do, but I’ve been dealing with…My son’s 17, and it’s never gotten us anywhere when we see people act like that.

Heather Sedlock: Here’s my thing. Yes, we want a kick-butt attitude, but we don’t want it [really?] As parents, we’re angry because we feel like our children are unjustly not getting what they deserve or what they need. And we’re angry, and we want someone to be angry with us. It’s okay to vent to your advocate and have your advocate understand fully what you’re going through. But there’s a level of professionalism that they should [show] when in the presence of outside view.

Like, I could go to Tricia and go: “Tricia, can you believe this SOB and B-I-T-C-H?” And she’s right along with me, going: “Oh, that’s horrible! What a blah blah blah.” But yet I know if I go into a meeting with Tricia, she’s not going to say those words.

Tricia Kenney: Right.

Sharon daVanport: Right.

Heather Sedlock: You want to make sure that they can work with the individuals that they need to work with in a courteous, civil, professional manner.

Sharon daVanport: And some people just don’t, and you find out the hard way. Like you said earlier, Heather, you find out after they’ve done the damage at the school. I think that just as a safety clause, I’ll tell you what: If I had to sign a contract, I might be putting some behavioral [expectations?] in there for my advocate. [Laughter]

Heather Sedlock: I never thought of it that way, but it would be a great weed-out. If someone says: “I don’t want you dictating my behavior,” maybe you don’t want them as your advocate.

Tricia Kenney: Right. Especially if they don’t feel like they can control themselves to that extent. You don’t want someone who can’t be level-headed like that.

Heather Sedlock: Like I said: We all get heated. We all get angry, but we’re the parents. The reason why we’re bringing in these advocates is to keep the waters calm and get work done.

Sharon daVanport: And I think it’s good to watch these advocates on these networking sites, people who claim to be advocates. When Tricia and I and the different directors at AWN get contacted about people saying: “There’s this person. They’re an advocate; they have this organization.” We were recently contacted about this person who’s been an advocate and recently said they’re going to start going into schools now in their state and do advocacy. So people are asking around about this person. And one thing that we just try to say is: “Watch their behaviors online. Watch what they’re saying. Check them out,” like you’re advising today.

But it’s important that people do that, because Tricia and I have had an experience where we saw someone literally on several occasions…We’ve been contacted through the AWN, too, where this person claiming to be an advocate has been pretty verbally hostile to autistics over on some networking sites, and allowed…someone that they knew didn’t even come to the protection of an autistic when this particular person who’s autistic was attacked by this person, who claims to be an advocate. I tell you: Would you really want someone like that as an advocate, if they’re out there doing something like that, hostile, and all these autistics are reporting this? Behaviors are important things to watch in people claiming to be advocates.

Heather Sedlock: Yeah, exactly. I will say this: I am human, and I have done some things online—left certain caustic comments.

Sharon daVanport: Right. We’re talking about a pattern of behavior, though, that’s easy to see. Yeah.

Heather Sedlock: If you look at 99 percent of my comments, and they’re uplifting as they try to be. I offer prayers for people, and I do pray for them. I have a list that I pray for. Those are the type of comments I’m generally leaving, or advice, or: “Well, this is what I did.” That’s good. But if you have someone that claims to be an advocate and they go and say to a parent: “Well, that was stupid. Why’d you do that?” The way they talk to a parent is what you want to look at, and how they describe that parent’s behavior or something.

Sharon daVanport: And the way that they behave online in networking sites. The way that they’re acting there, expect that that’s the way that they’re going to advocate for you. Either they’ll be there for you or not, assuming those behaviors are pretty indicative of what you’re getting. What you see is usually what you get. [Laughter] I tell people that: “What you see is what you get most of the time.”

Tricia Kenney: You don’t want somebody who is always going to try and take charge and be in control and do everything for you. You want somebody who is going to take this as a learning opportunity to teach parents. A friend of mine always says that the goal of the advocate should be to not be needed.

Heather Sedlock: Right.

Tricia Kenney: So if somebody’s like: “No, no. You don’t worry your little head about that. I’ll just take care of it,” and they don’t give you the information of what they’re doing or where they’re referencing their material from or anything, that’s a big red flag right there. You want somebody to teach you how to do this stuff on your own.

Heather Sedlock: Right. There are some advocacy groups out there that are awesome. My husband, he’s the webmaster. His name’s Jerry Stephen online. He’s creating the website still. It’s going in phases. It is up and running. There are things there for people to look at, but as we get the internal infrastructure going, we will be publishing the names of those advocates that have been cleared. And on the reverse, names of individuals who are in need of help. That’s the other thing.

Sharon daVanport: Oh, that will be nice. Kind of like a board? Like a posting board where you can go in and say: “I’m a parent. I live in such-and-such state. I’d like to have an advocate.” So people can actually go there and advocates can go there and see what different people in different states are needing? Okay.

Heather Sedlock: Right. Yes. Angie’s List is a board for services in your neighborhood: cleaning services [unknown]. It will be sort of like an Angie’s List of the special needs advocates. And there’ll be a rating system and things like that. But that is further down the line. He’s got to get the main [unknown] up first.

Right now, individuals can go there, request a report: “I use so-and-so. Do you have a report on him?” and get a report on them. Or: “I’m an individual in need of services. I’ve been petitioning for money online from advocacy groups that give out grants, but someone accused me of being a fraud. I want to prove myself that I’m who I say I am. My circumstances are what I say they are.” We’ll go ahead and we’ll give you the accreditation, in a sense, to say: “Yes, this person has this issue. Yes, this person is in need. And this is the need.” So you can take that to an organization that gives out grants or gives out services that you’re looking for.

Tricia Kenney: That’s really good, because I think a lot of people online are very wary of people asking for help and saying: “I need to raise $1,000 for legal services for my child.” People are not very willing to give, because they’re afraid it’s a scam.

Sharon daVanport: Right.

Heather Sedlock: Unfortunately, sometimes it is. That’s the sad part. I won’t mention names, because I don’t even know [the woman’s] real name. But when I do, you’ll know it. She went out and collected it looks like $250,000—

Tricia Kenney: Oh, my God.

Sharon daVanport: Oh, wow.

Heather Sedlock: —using a sob story. It is heartbreaking. Some people get picked on, but do due diligence. Make sure you check them out. They get: “Oh, how dare you question this poor mom?!” Well, no. That’s kind of good advice. You want to check them out. But at the same time, you don’t want to be so nasty about it, just in case the person is a person in need. You want to find out the truth, not harass the person.

Tricia Kenney: Right.

Heather Sedlock: So that’s why you can come to us, and with written permissions from you, verification information from you, third party verification. We’ll go through a process, and we’ll verify your claims. And then you could take our report and bring it to these local agencies, online agencies, what have you, and get the help and support you need, having been verified.

Sharon daVanport: Okay. I know, Heather, we’ve only got three minutes left. So to wrap things up, I want to make sure we get your website information out there and your contact information for our listeners. Your website information, again, is—?

Heather Sedlock: www.advocacyfraud.org.

Sharon daVanport: Okay. And is there a contact sheet there on the website for people to contact you?

Heather Sedlock: [My] contact information is there on the website.

Sharon daVanport: Okay.

Tricia Kenney: Sounds good.

Sharon daVanport: All right. Well, thank you so much for being with us today, Heather. Is there anything that we didn’t mention about AAFA that you’d like to let our listeners know?

Heather Sedlock: I didn’t mention that we are a non-profit. We don’t have a 5013c; it’s in the process. But as soon as that does go through, we’ll put that up there. We do not accept donations. We do not accept money of any kind. We don’t ask for money. We do it all for free.

Tricia Kenney: Wonderful. That’s great.

Sharon daVanport: Wow, that’s wonderful. It really is, Heather.

Heather Sedlock: There were some rumors out there.

Sharon daVanport: Okay. Well, I’m glad you got the chance to clear that up. That’s really wonderful.

Tricia Kenney: I think it’s wonderful that your filling a need, because there is no oversight of advocates. Parents do fall prey, and I’m so glad that somebody took the initiative to try and protect people out there.

Heather Sedlock: There are professional organizations that advocates can join, just like doctors join and dentists join. But there’s no oversight committee right now.

Tricia Kenney: Um-hm.

Sharon daVanport: That’s scary, isn’t it? It really is. Okay, well listen, Heather, thank you again. You’re not feeling well today, so get some rest. Get rest, and thank you for joining us. You have a good day.

Tricia Kenney: [Unknown], Heather.

Heather Sedlock: You, too.

Sharon daVanport: All right. Bye-bye.

Tricia Kenney: Bye-bye.

[Heather hangs up].

Sharon daVanport: Okay. Well, that about does it today for us on AWN radio. Thank you, Tricia.

Tricia Kenney: I think we got some good information out there, and hopefully parents will feel a little bit safer about the steps they can take to ensure their children’s education and rights.

Sharon daVanport: That’s right. And don’t forget to join us next Saturday, same time: Noon Central, 1:00 Eastern, and that is with Nadia and Tanya Bloom. We will be announcing our winner for the GPS locator and one year of service from LifePROTEKT.

Tricia Kenney: All right. Sounds good. Looking forward to it.

Sharon daVanport: Okay. Thank you all again in the chat room, and all the listeners on the switchboard. We will be talking to everyone next week. Bye-bye.

Tricia Kenney: All right. Bye-bye.


Tagged with: , ,

One Response

Subscribe to comments with RSS.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: