Monday, August 17, 2009
With school starting soon, we take a look at the obstacles special education students face and how parents can advocate for better care.
MAUREEN CAVANAUGH (Host): I'm Maureen Cavanaugh, and you're listening to These Days on KPBS. As kids reluctantly get ready for another school year in San Diego, their parents have a lot of questions. Just what impact is all the recent budget cutting going to have on the quality of education their children are getting? The urgency of that question increases for parents of children with disabilities. School districts are struggling to fulfill federal mandates to provide special education, while juggling increased class sizes and reductions in support services. Teachers will now be required to take on some of the duties needed for special ed students that used to be done by classroom aides or behavior specialists. With me to discuss the increased strain on special education in California and the role parents should play in helping their children through the process are my guests. Colin Ong-Dean, he's author of "Distinguishing Disability: Parents, Privilege, and Special Education." He's a researcher at UCSD. Colin, welcome to These Days.
COLIN ONG-DEAN (Author): Thanks for having me.
CAVANAUGH: And Penny Valentine is Senior Director with the San Diego County Office of Education and Director of the South County Special Education Local Plan Area. Penny, welcome.
VALENTINE: Good morning.
CAVANAUGH: And we want our listeners to join the conversation. Does your child need special education services? What has been your experience in getting your child's needs met in San Diego public schools? And if you're a teacher with special ed students, give us a call. The number is 1-888-895-5727, that's 1-888-895-KPBS. Colin, your research focuses on the role played by parents in getting both a proper diagnosis for their disabled children and appropriate education for their kids. What kind of parental involvement does that take?
ONG-DEAN: Well, formally, Maureen, federal law provides for parents to be involved at all stages of the IEP process. They can request evaluations when – I'm sorry. IEPs are Individualized Education Programs or Plans. That's how our disabled children's needs are supposed to be met and parents are free to – invited to show up to those meetings where those are planned. They're invited to challenge the school's decisions if they see fit. But my research really argues that in order to do that effectively parents need a certain amount of economic capital income. They need to be able to purchase services to support them in that effort and they also need what sociologists sometimes refer to as cultural capital; they need knowledge about disabilities, about how law works, about how to make persuasive arguments in an institutional context. So, really, my research is about the inequality that exists in parents' ability to advocate successfully in the special education system.
CAVANAUGH: Penny, would that be your experience as well? Do you see a sort of inequality in the ability of parents to get good special ed for their kids?
VALENTINE: Well, I think it's important to realize that parents need to approach the education system as a team and a partner. While I think you're right that parents of privilege or upper and middle class do have access to those services, there are a lot of ways that all parents can get involved and advocate for the services that are appropriate for their children. And we are seeing a number of agencies that are helping parents at all levels advocate and work with the school districts.
CAVANAUGH: Colin, I'd like you, if you could, again, referring to your research, to break it down a little bit and tell us how exactly you see social class differences working in how well – how effectively parents can advocate for their disabled children.
ONG-DEAN: Yeah, well, and let me comment on the previous point and – because I don't want to suggest that it's a completely polarized system, that disadvantaged parents don't get anything out of the special education system. That's certainly not the case. My research does focus on – especially it culminates in these conflicts that occur between schools and parents where it appears that parents have had trouble getting exactly what was needed for their children and really at that level you see very few parents who are disadvantaged. And as I said, that is partly a question of the wealth that's at the disposal of parents and it's also a question of their knowledge and understanding. I think the first one seems fairly obvious. If parents can hire lawyers, have their kids put in private placements that can later be reimbursed, that obviously makes a difference and it's obviously only going to be accessible to those who can afford it. But they also have to be able to make the right decisions, which depends, in some sense, on understanding what the law provides, understanding what their children need, and they need to be able to persuasively justify their decisions which, again, depends on a certain educational background, a certain attitude about their relationship to their children's education.
CAVANAUGH: I wonder, does the way a parent reacts to their child's disability influence how the child deals with the disability or the treatment the child receives?
ONG-DEAN: Does – How the parent reacts to…
CAVANAUGH: The diagnosis.
ONG-DEAN: To the diagnosis? You know, that's not exactly something I look at. I'm really more interested in how parents have different resources in really identifying disabilities at the first – at the first stage, so it's…
CAVANAUGH: Well, let me take that question…
CAVANAUGH: …a little bit farther then. According to your research then, what you're saying basically is that parents who have more resources have more resources to devote to their children who are disabled, which makes a lot of practical sense.
CAVANAUGH: How does that affect the child, him or herself, who has the disability? Are they more likely to be responding to the kind of help that they're getting in school and in other places?
ONG-DEAN: Well, it can even start before that because if we say how does it affect the child with a disability, that assumes that we know beforehand who has a disability and who doesn't, and partly parents are there helping schools to make that determination. So in some cases it's a question of parents looking at what their children are like and trying to arrive at an idea of what they might have. They might not be hearing from the school so at that stage, it makes a difference but also there's a lot of research to show that the kinds of placement that students have varies by social class. That can have something to do with the kind of district that they're in and how many resources are available but even within districts, you know, middle to upper income white students are more likely to be in less segregated placements. They're more likely to get the high cost services that can really make a difference.
CAVANAUGH: I'm speaking with Colin Ong-Dean. He's author of "Distinguishing Disability: Parents, Privilege, and Special Education." He's a researcher at UCSD. And I also have as a guest Penny Valentine. She's Senior Director with the San Diego County Office of Education and Director of the South County SELPA. And we're taking your calls at 1-888-895-5727, that's 1-888-895-KPBS. Penny, is there such a thing as a parent being too involved?
VALENTINE: I don't think so. I think it's really important for parents to understand that they need to advocate for their children and we would certainly agree with that. It's important to also help parents to understand what is the obligation from federal law and also state law in terms of what are appropriate services for their child. But I think it's also important to know that many districts, and I would say the majority of districts in San Diego County, do actively work to help parents understand the IEP process, understand the kinds of services that are available. We do a number of things in South County SELPA. We have resource parents that will help parents if they're having a difficult time working with their school districts and many districts have similar services.
CAVANAUGH: Would you encourage parents to trust schools and administrators that they are making the right decisions for their child?
VALENTINE: I think that it's not a matter of the school knowing all of it. Certainly, parents know their children better than anyone else. If you see it as a partnership and I think parents need to come with their concerns and express those concerns but be willing to work in – as partners with the school and we know that children really benefit when that home/school relationship is a very positive one. If parents have concerns about the kinds of services, they certainly need to call an IEP, they need to talk with the district director, they need to work with the school psychologist. Oftentimes, I think parents may have concerns but they're unwilling or they're hesitant to ask for a meeting between those annual reviews, and I would certainly encourage parents if you have a concern, be up front about it, talk with your school district, talk with the teacher and talk with the administration, and let's address those problems early on and not let them get to the point where you're frustrated or you feel like the school is not being responsive to you.
CAVANAUGH: And in the opening, I did mention the fact that whatever challenges that teachers and parents and students are experiencing with special education in San Diego schools only has to be increased with the fact that the budgets are getting tighter and tighter. I wonder if you could tell us, Penny, some of the challenges San Diego County is facing in providing special education because of the recent budget cuts.
VALENTINE: Well, it's important to understand that districts get a certain amount of money for each student and they call that the revenue limit and it comes from the state. Over the last two years, districts have received about – between a 19 and 20% cut in that revenue limit and that translates for a unified district to almost $600.00 per student. And so what the district is getting to just fund general education is decreasing, what the – when a student is in a special day class, they transfer that revenue limit to the special education to help pay for those services because special education is a federally mandated program. When they lose money in the revenue limit, they have to then backfill from other funds to continue to fund special education. So general education is really being hit twice. Special education, in our districts we're seeing larger class sizes, we're seeing some loss of supplemental services, school psychologists, counselors, behavior intervention specialists.
CAVANAUGH: Let me take a – I want to remind our listeners that we are taking their phone calls at 1-888-895-5727. And let me take a call. Mary is calling from Carlsbad. Good morning, Mary, and welcome to These Days.
MARY (Caller, Carlsbad): Hi, thanks. I have a son who's 15 and he's been designated special ed under emotional disturbance which I – and I've been working for a year trying to get him services. And the school district partners with County Mental Health and in this circumstance with emotional disturbance. And his IEP is at the end of the month and I've even – You know, I've had – I hired a professional advocate to help get the services and I don't think he's going to get what he needs and I just wanted to comment that even with an advocate, it's been very difficult. I don't know if it's because of emotional disturbance that it becomes more complicated because his issues are, you know, substance abuse and behavioral problems in the community, vandalism, and things that have been – you know, he's been in juvenile hall and such but his diagnosis is bipolar and major depression. So I guess it's just been very difficult and I wonder if I should've gone a different route? If maybe through County Mental Health is not the way to go for a child that is showing problems in the way that he is?
CAVANAUGH: Mary, let me get reactions to your question and your comment. First of all, Penny, should she have gone a different route? What does it sound like to you?
VALENTINE: Well, County Mental Health is the agency by contract, by legislation, who is responsible for supporting students with emotional disturbances in relationship to the education system. So if she was going to go through the educational system with an IEP, County Mental Health is the agency that's responsible for providing those services. One of the things that's difficult with students who are identified as emotionally disturbed is oftentimes you will see behaviors in the community outside of the educational setting that in order to qualify for special education, it needs to be impacting their educational program.
CAVANAUGH: I see. I see. So if they're good in school and bad outside, they don't get any special help in school.
VALENTINE: Well, it's a little more complicated than that.
VALENTINE: But the law's very clear that it needs to be impacting their educational program.
CAVANAUGH: And, Colin, I wanted to ask you, Mary mentioned a hired advocate.
CAVANAUGH: What is a hired advocate?
ONG-DEAN: Well, you know, I guess that depends a little bit but usually they have some legal expertise in the area of special education. They know something about special education itself, the disabilities and accommodations for people with disabilities. And they can be rather expensive but they do seem to make a big difference for some parents in getting what they need. And I just wanted to comment, because also, you know, she is – Mary's obviously concerned that she's not going to get those services she needs for her son and I don't know if that's true or not or, you know, who she's working with or what her background is. Obviously, she has some resources. But I'm very concerned about coming across as saying, you know, parents who have the resources have an easy – easy row to hoe, and that's certainly not the case. I think all parents can potentially have difficulties in the special education system which is not to say that they normally do but it can be tough for any parent.
CAVANAUGH: Let's take another call. We are taking your calls at 1-888-895-5727. And Mike is calling from El Cajon. Good morning, Mike, and welcome to These Days.
MIKE (Caller, El Cajon): Good morning. I love your show. I was listening to this special education thing here and the way – My son has been in special education for – ever since he started school and that's – he's a junior this year. And the whole program is actually very adversarial and unless you really get in there and fight for your kid, you will not get anything. I mean, we had to literally stand on a desk and get loud, threaten legal action. I mean, it is a nightmare. And, you know, all throughout the years and everything, I mean, it got to the point where they would actually – the school district would hear my name and they'd just go, oh, God, I don't want to talk to this guy again.
CAVANAUGH: Thank you.
MIKE: And that's the way it is.
CAVANAUGH: Thank you for your comment, Mike. Penny, I'm wondering, does that happen a lot? I mean, do parents – do parents have to badger that you find at all? Or is it just if – maybe they start out on the wrong foot?
VALENTINE: I would hope to think – I'd like to think that parents don't have to badger. We have, in South County where I am, we have about 11,000 students with IEPs who have disabilities. Generally, in terms of legal proceedings, and Colin referred to the fact that parents can file legal proceedings, in the last three years we've had less than 20 filings in our six school districts. So there are occasions when that happens. I certainly hope that parents and school districts would strive to work together and not get to that adversarial point.
CAVANAUGH: Let me ask you something. When a parent comes in, what is it that they need to know that perhaps they don't about how this organization operates so that it doesn't become a shouting match, so that they don't feel like they're butting their head against a brick wall.
VALENTINE: Well, I think it's important to understand the IEP process, that Individual Educational Plan. Oftentimes, parents will come in with kind of a notion of what kinds of services they want and there's a whole process from the evaluation to identifying what those child's needs are to looking at what are goals and objectives to meet those needs, what kinds of services and supports do – does the child need to meet to reach those goals and then, finally, where is that going to happen? So sometimes parents come in with a preset end goal and they don't realize that there's a whole process in terms of the IEP and getting to what those appropriate services are.
CAVANAUGH: Let's take another call. Sophie is calling from Encinitas. Good morning, Sophie. Welcome to These Days.
SOPHIE (Caller, Encinitas): Hi. Thank you. I'm a parent of a child with autism and I serve on – as a parent advisor on the North County SELPA. And I was wondering if your guest could comment on the cuts to regional centers which it's day cuts to the Department of Development Services. There's three cuts that I'm especially concerned in. Number one is the loss of education consultants for parents which I think is especially hard for those parents who are poor and wouldn't have the money for them. The cuts to Early Start which I think are going to swell the number of kids who are going to enter the preschool programs that might not otherwise need special education services if they were caught early, and also some of the cuts in the shifts in the way applied behavior analysis is funded for students with autism.
CAVANAUGH: Thank you for those questions, Sophie. Penny, I'm going to direct most of this to you.
VALENTINE: Well, we would certainly agree with you that we are very concerned about the cuts in regional center. We have received notification that the educational consultants are being cut after the initial 12-hours of services. We actually received that last week. And as a statewide organization, the SELPA administrators are responding to the proposed regulations to – that will impact Early Start and I think the caller is absolutely right that the lack of Early Start services is going to impact the number of students who are ultimately referred for special education. So we would agree with her that that is a grave concern and we would certainly encourage people to respond to those regulation – those state regulations which, I believe, are still open for comment.
CAVANAUGH: And have you come up with any way around these or is – these cuts are just going to happen and parents are going to have to know about them, teachers are going to have to deal with them?
VALENTINE: Well, we are certainly hoping by our comments to the legislature as they're taking input on the regulations that we can ask them to reconsider because we do feel that it – they are inappropriate and it is going to impact the entire system.
CAVANAUGH: Now, Colin, taking away educational advocates for – that are just there for everyone…
CAVANAUGH: …that goes into your idea that people with resources have a better shot at getting what they need even in public school for their children with disabilities.
ONG-DEAN: Yeah, that's true, and I – that's probably an unfortunate thing. But, again, I think part of what I'm looking at is just how the very assumption that parents are going to be thinking of themselves as on the front line of advocating for their children's rights doesn't always equally include all parents. So even if that opportunity is made available to some parents, I'm not sure that that is going to close the whole gap. So it's not always a question of whether the school system is formally providing all the opportunities. I think often they make at least a, you know, a good faith effort. But, really, you know, what does it say that we're assuming that students' rights are best represented by parents on an individual basis? That's something that I think concerns me. So these cuts, I'm sure, are not going to help those parents but there are other concerns as well.
CAVANAUGH: Let's take another call. Martin is calling from El Cajon. Good morning, Martin, and welcome to These Days.
MARTIN (Caller, El Cajon): Morning. How you doing?
MARTIN: My comment is that I had a nephew that was basically designated as special education behavior and learning disability from elementary up through high school. And he came to live with me for a year. I got actively involved in his education. I just want to say that parents must get and stay very active in a child's education at home and to follow up at the school. Now I mean that they must get at home and teach the student at home, spend the hours and time instead of maybe watching TV or going to do something that's entertaining for them. They must be actively involved. They can – The student that I – that I – came to live with me and – my nephew, I tutored him over the summer and had – the school reevaluated him because even though they didn't want to, I kind of pressed for them to reevaluate him after I tutored him and he got out of the special education area at least two or three of his classes, into the regular curriculum. I requested – and parents must know that they can request a weekly report from the school signed by each teacher which gives a behavioral and a progress so that the parents can immediately act involving – correct any problems instead of waiting for report card time.
CAVANAUGH: Well, Martin, it sounds as if you got right in there and took charge. And, Penny, I'm wondering, from what Martin is saying is that you were – I saw you nodding your head there at least in the beginning. Is this the kind of active parental involvement that you're looking for?
VALENTINE: Absolutely. We encourage parents to stay involved. And a number of teachers – I think it's an excellent idea to send home weekly reports in terms of how students are doing. It also helps students to understand that you're working as a team, that there are consequences for what happens at school and they're reinforced at home just like the learning that happens at school is also reinforced at home. I think what he did was excellent.
CAVANAUGH: I wonder, Penny, how – do parents often come in with an 'us versus them' mentality?
VALENTINE: I wouldn't say often but it does happen and it's very unfortunate and we really encourage parents not to take that approach, that if we see ourselves as partners with parents, and I think that active involvement, staying in touch with the teacher, having that regular connection and communication helps not establish that us and them, it really helps solidify that partnership.
CAVANAUGH: And, Colin, I know that this wasn't the thrust of your research but I wonder if there's anything in your conclusions that other parents can learn, perhaps parents that are not necessarily privileged, in how to advocate for their children with disabilities?
ONG-DEAN: Yeah, I don't necessarily go down the recommendations path…
ONG-DEAN: …the policy recommendations.
CAVANAUGH: Yes, I know.
ONG-DEAN: But what to recommend? I guess that's not my focus partly because I don't want to say the burden is on the parents; that's where the burden already is. And I think the burden should be on thinking about how can we help other people to advocate for children? How can we take some of the burden off of parents? So I don't – I don't necessarily want to say, well, here's what parents who are less likely to be involved need to be doing. One thing I wanted to add onto the previous comment, too, I think what some research shows and actually others more than mine, is that parents often come away from meetings that seem harmonious and feel very conflicted inside, feel that they weren't heard. And so one of the surprising things I did see in my – in surveys and interviews that I conducted is that conflict wasn't always a bad thing, at least if, in the end, it resulted in something constructive, that parents who were often most dissatisfied were those who felt that they came away and were never allowed to speak. And I'm not saying that that's something that special education people are trying to do, that they're trying to shut parents down, but parents can feel very intimidated when there's a very high level of scientific and legal discourse floating around. So sometimes that conflict actually reflects some satisfaction on parents' part that they got to be heard.
CAVANAUGH: Active communication on both sides.
CAVANAUGH: I have to thank you both so much for talking with us today. Colin Ong-Dean is author of "Distinguishing Disability." He's a researcher at UCSD. And Penny Valentine, a Senior Director with the San Diego County Office of Education and Director of the South County Special Education Local Plan Area. Thank you both for speaking with us this morning.
ONG-DEAN: Thank you.
VALENTINE: Thank you.
CAVANAUGH: And I want to let everyone know that you can post your comments online, KBPS.org/TheseDays.