Other People's Words

Transcript: Autism Women's Network interview with Ari Ne'eman about the Preventing Harmful Restraint and Seclusion in Schools Act

Posted in Uncategorized by Tera on December 31, 2009

This is a transcript of Sharon daVanport’s interview with Ari Ne’eman about seclusion and restraints in schools, and the Preventing Harmful Restraint and Seclusion Act.

Sharon daVanport: Hello, everyone, and welcome to AWN radio. I am your host, Sharon daVanport. We have as our guest this evening, Ari Ne’eman. Ari is the president of ASAN. Are you still with us, Ari?

Ari Ne’eman: I am, indeed. Thanks for having me on the show again.

Sharon daVanport: I wanna let everybody know that Ari is going to be taking questions via the chat room. We thought that we could do much better if we were able to do it through the chat room, because we can include more people. A lot of people were having some volume issues, and we’re trying to get that resolved.

Let’s get started, Ari. I wanna start by first congratulating you. Ari was recently nominated by President Obama for a post on the National Council on Disability. I know that I can speak for many people who were just really pleased to hear that you were nominated for that. We’ll look forward to hearing more about that in the future.

Ari Ne’eman: Thank you ver much. I consider it quite an honor; I’m just looking forward to the Senate confirmation process.

Sharon daVanport: To get started, if you could just let everyone know what the current status is right now and why this legislation was needed.

Ari Ne’eman: This is an issue that it’s long past time something was done about this. For a very long time, families of students with and without disabilities—although students with disabilities are clearly the most vulnerable population in regards to this—have been living with a reality in which they send their childre to school; they find that very often they come back with significant injuries and significant trauma—in some instances, having suffered severe injury or even death as a result of actions on the part of school personnel. Specifically actions relating to inappropriate restraint and seclusion, as well as the use of aversives.

This is something that has been going on for quite some time, and generally has been presented as being a response to dangerous or inappropriate behavior on the part of school personnel and the part of those who have opposed taking action to stop these reprehensible practices or restraints, seclusion and aversives against students with and without disabilities. But recently, this issue was explored by a broad report (PDF} which is the umbrella organization for protection and advocacy centers across the country.

What was found is that 41 percent of states do not have any regulations limiting the use of aversives, restraints and seclusion in their jusisdictions. In fact, these techniques are being utilized in a way that is injuring students, is often in response to relatively minor and non-harmful behaviors.

In the editorial Representative [George] Miller and Representative [Cathy] McMorris Rogers published on CNN.com announcing the legislation on this topic, the examples provided were: one students was restrained for simply wiggling a tooth and not stopping when the teacher requested it. Even in respect to when this is being a response to harmful or dangerous behaviors, it’s being conducted in a fashion that is causing students very real harm and very real damage.

What this legislation that’s currently been proposed in Congress would do would be to create a national floor of standards protecting students with and without disabilities, and preventing the use of restraint and seclusion unless there is truly an imminent danger of serious physical harm to the student in question or to others around them. It would end the situation—which is currently in place in many states—where students can be restrained as a result of property damage, or to “maintain an orderly classroom”—a very broad, vague statement that’s often utilized by school personnel to justify restaint under highly inappropriate settings.

In addition, this legislation would implement a number of reporting requirements, other types of regulation and other provisions I’m going to talk about today to hopefully bring restraint, seclusion and aversives to an end altogether.

This is an issue that’s very near and dear to my heart. My very first experience with policy advocacy was serving on the New Jersey Special Education Review Commission in 2006. One of the things that we had hoped to do there was recommend to the legislature to pass a law really doing what this federal law is proposing to do: working to stop aversives, restraints and seclusion. Our efforts to do that were blocked by a system of segregated schools in New Jersey, who hired a fairly extensive system of lobbyists to prevent such laws from being passed.

Indeed, one of the first types of policy advocacy I engaged in was filing a minority report [unknown] general report to the comission, calling attention to this issue. This is something that I’ve been working on and that many advocates have been working on for a considerable amount of time. It’s past time that action was taken, because students with and without disabilities are facing severe injury and even death as a result of these reprehensible practices.

Sharon daVanport: Right. I’m just suprised that you said 41 percent of states have absolutely no regulations.

Ari Ne’eman: That’s true. 41 percent of states have nothing. A student can be restrained in response to the slightest provocation, and families have no legal recourse. In addition, only 45 percent of states actually require that schools notify parents or guardians if a student is restrained or secluded. If you speak to a lot of the families doing a lot of the advocacy work on this issue, they don’t even know that their child has been restrained until they come home with bruises or they discover that their child has developed post-traumatic stress disorder. That’s another important aspect of the proposed legislation I’d like to talk about tonight, to ensure that families will at least be notified in what we hope will be extremely rare circumstances when restraint is utilized, as opposed to the current situation.

Sharon daVanport: Could you explain what is going to happen now? What is gonna be the one thing that’s the biggest benefit of all this? Is it gonna be a requirement for all states now to have to come up with their own guidelines that meet the federal guidelines? Is that how it’s gonna work?

Ari Ne’eman: The name of the legislation is the Preventing Harmful Restraint and Seclusion in Schools Act. (PDF) Its number is H.R. 4247 in the House, and Senate Bill 2867 in the Senate. First, it prohibits the use of restraint and seclusion unless a student’s behavior poses an immediate danger of physical injury and less restrictive interventions would be ineffective. Should this bill be passed and enforced, a teacher would no longer be able to say: “The studnet was acting out” or “was behaving inappropriately, so I engaged in restraint.” Or “I thought the student was engaged in a behavior that might at some point lead to physical injury.” The requirement is: “an immediate danger of physical injury.” That’s extremely important, because, truthfully, the kind of steps that have been taken have been just incredibly reprehensible.

Beyond that, it prohibits certain kinds of restraint altogether—mechanical restraint, chemical restraint, any kind of physical restraint that resticts airflow to the lungs, as well as aversives that compromise health and safety. Our personal opinion is that all aversives should be banned, and we hope that’s something that’s addressed in future legislation. The reason they have this current phrasing (which I think is somewhat vague and at some point will need to be clarified in regulation) is because they didn’t want this to turn into a debate about corporal punishment, which is generally considered to be a separate issue and would make this bill much harder to pass.

In addition to that, this would create a funding stream to train teachers throughout the states in techniques to keep behavior that poses an immediate threat of physical injury from happening; to teach about de-escalation techniques and how to spot antecedent behavior so as to address these things before it happens.

We should view any instance of restraint or seclusion as a failure, regardless of whether or not it meets the standards. It’s a failure of the school system to spot the signs beforehand and to take steps to address them.

Sharon daVanport: I like the point you just made, because someone e-mailed me a comment and a couple questions, and that was included in her questions. She wanted to ask you if restraints were really just an admission of failure of the person doing that, that they didn’t catch the behavior escalating.

Ari Ne’eman: I think that’s a very good way of phrasing it. I think that restraint and seclusion, even when its use meets the proposed new federal standard—even when it meets the strictest possible standard—is truly a failure on the part of personnel for not spotting the signs earlier. I think our long-term goal needs to be a world in which all students with and without disabilities no longer face restraint or seclusion or aversives at all. That has to be through a combination of legal action and enforcement, as well as teacher training and other methods.

These kinds of abuses are seriously harmful to students, and are particularly harmful to students with disabilities and students on the autism spectrum in particular. Our population, like other populations of students with disabilities, are uniquely vulnerable in many respects.

Sharon daVanport: Do you think it comes down to dollars and cents? That training costs money? That was a part of the question that one of our listeners had sent in. She’s wondering is restraint and seclusion just a quick fix because it’s far cheaper?

Ari Ne’eman: I think that’s an element of it, although, quite frankly, I think that that can’t really explain it by itself. I will say, I think the fact that this is happening now, and although this is being opposed by the American Association of School Administrators in an horrendous move, although it’s being supported by teachers’ unions. The reason it’s being supported by teachers unions is that the bill authorizes funds for training, and that hasn’t been the case with previous such attempts at legislation. That’s one of reasons why we think that this has one of the better chances of passing—the money element you identify.

But I don’t think that this is happening because of a lack of adequate funds for training—at least, not alone. I think this is part of a broader attitude, which says that students with disabilities don’t belong in the regular classroom, and don’t belong in schools altogether. It’s the kind of reactionary attitude that the passage of IDEA and the passage of the ADA was designed to fight against. In that sense, I see the effort to protect students with and without disabilities from aversives, restraint and seclusion as an outgrowth of the same kinds of civil rights-oriented efforts we engage in when we fight to strengthen the ADA and IDEA and similar legislation.

Sharon daVanport: Here’s a question from the chatroom. Dana’s saying: Even in states where there are laws protecting children from restraints and seclusion, is there something that she can do as a parent to make sure that her child isn’t restrained or secluded? Is there something now in this new legislation that’s going to empower the parents to be able to say: “Absolutely I don’t ever want that used”? How much are parents gonna be able to be involved in this now?

Ari Ne’eman: One of the things that’s important—even if you come from a state with a very strong law—is to work to pass this federal law, because I think that it will further strengthen the situation. It will protect students nationally, and it will also ensure that states are held accountable through additional reporting requirements to the Department of Education and parental notification requirements, so that if this does happen, families are notified.

In addition, it can be particularly important to ensure that you find out whether or not your child’s school has personnel that are trained in de-escalation techniques, and if, God forbid, restraint is utilized, they’re trained in restraint that does not interfere with airflow to ensure that the child is not going to die as a result, or face significant injury. But in particular, that they are trained in the kind of techniques that are going to prevent restraint from being utilized altogether. I think that is perhaps one of the best ways for parents—ensuring that teachers and school personnel get the kind of training to prevent this from even coming to that is going to be one of the most important things families can do at the individual level.

Sharon daVanport: What does the new legislation say at this point about the training for school personnel? Is it pretty specific, or is it pretty broad? How is it defined in the new legislation, where it’s going to guarantee that the school personnel are actually trained in de-escalation?

Ari Ne’eman: It makes funds available, and in addition, it provides some broad information as to what that training will have to include. It does provide information as to a state-approved training program has to include. Although we are supporters of this legislation, and we are encouraging our grassroots to go to their members of Congress and encourage them to become co-sponsors, there’s a legislative process and we are hoping to see some ways of further clarifying and further strengthening this bill.

One of the things that we’re hoping to do is to ensure that organizations representing people with disabilities are consulted as to what should go into those training programs and how school personnel should be trained. That’s something that isn’t in the bill as of yet, but in talking to some legislative sponsors, we’ve gotten some very good feedback. Senator Dodd and Representatives Miller and McMorris-Rogers have shown themselves to be courageous champions of the rights of students with disabilities.

Sharon daVanport: That’s good to know. The thing that I really worry about is that when it starts getting down to the separate states doing things, is it really going to affect the federal law overall? Is it going to be challenged at some point because it’s just too broad? Is it two years that the states have to be in compliance with this legislation?

Ari Ne’eman: Yes. They have two years aftr the enactment of the legislation to send to the Secretary of Education at the national level their new state policies and procedures that meet the minimum standards provided for by the Act, as well as a mechanism through which the state intends to actively monitor and enforce those minimum standards.

Sharon daVanport: I’m wondering if when the states, one by one, start going through the legislation, is it going to be specific enough to where they can’t really start challenging at the federal level? You know how when some legilsation gets passed and it goes to the state level, that’s when you start seeing the problems because they’re trying to challenge it?

Ari Ne’eman: [Unknown] and No Child Left Behind…when states try to find loopholes. Is that what you’re referring to?

Sharon daVanport: Exactly. “Loophole”—that’s the word I was trying to think of. That’s it. The loopholes that start coming about to where it’s not like there’s even legislation anymore, because they’re finding ways to get around it.

Ari Ne’eman: I think that’s an extremely important issue. The sad truth is that historically, legislation affecting people with disabilities has been enforced a great deal less than legislation affecting the general population. It’s certainly been the case if you were to compare enforcement of the Civil Rights Act and the Americans with Disabilities Act. Or of No Child Left Behind, which wasn’t enforced all that well, either, but certainly it was enforced much better than the Individuals with Disabilities Education Act.

I think that you definitely see states try and undertake loopholes. That’s why what I believe will make or break this legislation—provided that it passes—is the extent to which we see a real willingness on the part of the Obama administration, on the part of Secretary Duncan’s Department of Education to follow up in terms of going after states that are violating the rules. If we see a state to be a persistent offender in not meeting the minimum standards, and in not enforcing the necessary minimum standards and creating a mechanism to do that,this legislation allows the Secretary of Education to withhold funds from their federal education aid allotment, or to redirect funds to say: “You are not spending your money on what you need to be spending it on to protect students, and thus we are going to require that a greater percentage of your federal aid needs to be dedicated to teacher training and to enforcement.”

Whether or not that actually happens is going to be an open question, and just like we’re going to need a very strong push on the part of advocates in DC and across the country to pass this legislation, I think we’re going to need an equally strong push to ensure that this legislation is meaningful, and is followed through on. Otherwise, you’re right—states will try and find loopholes, and we need to be there to stop them.

Sharon daVanport: Right when you used the word “loophole,” I saw that Stacy in the chatroom posted that exact question: “Will there be loopholes that allow states to not comply?” [Laughter] That’s good. I’m glad you covered that. That’s the one thing that I really worry about. I see that happening a lot with so many things. Are you willing to take some questions about some other things [besides restraint and seclusion] as well?

Ari Ne’eman: Why don’t I see if I can address those in the chatroom after we finish discussing restraint and seclusion legislation? I think it’s important that we give people a chance to talk about the restraint and seclusion legislation and what they can do to help advance it, given the urgency and importance attached to this issue.

Sharon daVanport: TannersDad is asking something that I think goes along with this legislation. He’s asking if you define autism and Asperger’s as a disability? Is the restraint and seclusion protection something you have to have a defined disability to [benefit from]?

Ari Ne’eman: There are a few different questions in there. To answer the first question: Yes, I do define autism and Asperger’s as a disability. As a matter of fact, what’s very unfortunate is that until recently, very often our court system did not. And it did not in regards to many people who have invisible disabilities, or people who utilize various means to cope with their disabilities.

That’s part of why a broad array of disability rights organizations and advocates, including ASAN, fought for passage of the ADA Amendments Act of 2008, which reinforces the original intent of Congress to ensure that the definition of “disability” would be construed broadly, and that less visible disabilties like the autism spectrum including Asperger Syndrome would be covered under that. I had the pleasure of fighting for and supporting that legislation. Yes, I very much do think it’s important that we acknowledge the place of the autism spectrum and the neurodiversity community as part of the broader disability rights community and broader disability rights movement.

As for this particular legislation, one of the things that’s relevant about this is that in some states, it’s only against students with disabilities that these techniques have been utilized. However, there was a regulation that the Florida Department of Education tried to push through that would have allowed very broad latitude fofr school personnel to restrain and seclude students with and without disabilities. We worked with parent groups and advocacy groups as well as self-advocate groups in Florida to support them in their efforts of stopping this.

So the truth of the matter is that that this is an issue that affects both students with disabilities and students without disabilities. As a result of that, this legislation is comprehensive. It ensures that students with disabilities will enjoy the same kind of protections that students without disabilities will enjoy, and that all students will be able to have legal protections against facing the threat of injury or even death as a result of violence from school personnel.

Sharon daVanport: I’m really amazed at some of the stories that I’ve heard. Sometimes they don’t get attention until they’re really bad—until a student dies. But there are a lot of stories about children who sit in these rooms and they perhaps don’t die. They don’t make the headlines on the news, but some of the conditions in some of these seclusion rooms…It seems so inhumane to me. I can’t believe that we’re even doing this in our day and time.

Ari Ne’eman: I travel and do a lot of speaking to parents and adults and students with disabilities. I once spoke with a high school student on the spectrum who had been secluded very consistantly and at various points in her school career. As a result of that, she had bounced ffrom school to school because of the challenges she was facing because of post-traumatic stress disorder in relation to the abuses that had been committed against her.

I think that is really indicative of long-term difficulties that can result from this. Not only do students with disabilities have to face many of the challenges that we do face in terms of coping with our disability; in terms of coping with a world really wasn’t designed for and in some senses does not want people like us in it; but often, students with disabilities have to cope with the aftermath of real trauma and real abuse—sometimes undertaken in the name of treatment by those who claim to be there in order to help students. I think that that is simply criminal. It is something that calls out for action.

Sharon daVanport: It does, doesn’t it? Someone’s wanting to know if this legislation will carry over to protect students in hospital settings.

Ari Ne’eman: I believe that it will be, yes. That’s something that I will double-check, but I believe that it will be. There are a number of different kinds of these sorts of settings. Some of those settings might be protected already under the Children’s Health Act of 2000. Others of those settings do not currently enjoy protection. I believe that this legislation is intended to be fully comprehensive, and to include all students, regardless of what particular educational placement they might have. I will follow up on that to make absolutely certain. [Unknown] It will certainly carry over into both regular public schools, as well as private schools and out-of-district placement. Whatever kind of school a student is in, this legislation is going to apply to.

Sharon daVanport: That’s good to know. TannersDad is asking: “How do you think we can avoid retribution for bringing up the restraint issue?”

Ari Ne’eman: I think that’s an excellent question. That’s an extremely important question, and it’s one of the biggest problems that families often face. When they try and assert their educational rights, they face retribution from the school system as a result of that.

One of the things that may prove to be the most effective—but unfortunately, it is not something that all families have the ability to do—is to hire an attorney. Very often, unfortunately, because IDEA is very difficult to seek meaningful enforcement remedies under, families are forced to do that in order for the school to even take them seriously. That can be a very arduous and difficult process. But it does remain one of the most effective means of trying to address that kind of intimidation.

There is mixed effectiveness in terms of how well this [other tactic] will address your problem because of the difficulties in terms of capacity, because there are problems so widespread, but there is a possibility of filing a complaint with the state’s Protection and Advocacy System, which is intended to serve as something of a public interest law firm. Every state has one. They’re funded by the federal government.

In addition, you can file a complaint with the Department of Education Office for Civil Rights. Quite honestly, it has not the greatest track record of success in terms of following up on that, but that is another option that is available to families.

Beyond that, one of the best resources that a family can go to for both instances of intimidation and broader questions of how they can get the best kind of resources and supports for their child in regards to the special education system is their state’s or local area’s Parent Training and Information Center., which is another federally funded entity that is designed to help parents navigate the special education system. One of the advantages there is that’s going to be a local source for information and assistance. They’re going to be able to be much more responsive to knowledge about conditions in specific states or in specific school districs than on the national scene, speaking in a broad sense.

Sharon daVanport: That’s good. Phyllis from Florida’s wanting to thank you for all that you’ve been doing to get the restraint and seclusion bill passed.

Ari Ne’eman: Is that the same Phyllis from Florida—?[Transcriber’s note: I think this may be Phyllis Musumeci.]I think it is. Tell Phyllis “Thank you. as well. Phyllis is a formidable advocate in and of herself. In a lot of ways, without her efforts, I don’t think this situation would be anywhere near as far along as it is currently.

Sharon daVanport: Codeman is wanting you to offer some advice on if a parent who is autistic and has a child who’s autistic, how they can make heads or tails of all the paperwork and stuff that is involved. Maybe he’s referring to the paperwork involved in having to follow up to file a complaint? I was gonna mention when you [Ari] were talking about the places to file something. Oftentimes parents just feel so overwhelmed that not only do they not know where to begin, but when they do, they feel so overwhelmed by the system and everything that they sometimes feel defeated before they get started.

Ari Ne’eman: I think that’s a very significant problem, and it’s not just a problem of dealing with restraint and seclusion; it’s a problem of dealing with the education system in general. Families have to be their own advocates, by and large, whereas school sytems often have much more resources and much more knowledge of the system. They are the system, in many respects.

Once again, I would really strongly recommend the Parent Training and Information Centers. In all the different areas where I’ve interacted with PTIs, I’ve had good experiences with them. I think it’s a good system, although certainly I haven’t interacted with every single one of them. There are hPTIs in every state—sometimes several in a particular state. But I think that represents a very important resource for families. I think that can be a particularly useful thing in terms of dealing with the paperwork. You often have parent advocates or advocates who have knowledge of how to deal with advocacy in regards to a school district on these kinds of issues.

If you’re fortunate enough to live in an area where a group like this might be in operation, there are also some disability-specific public interest law firms: for example, the Maryland Coalition for Inclusive Education, or Disability Rights Education and Defense Fund, that operate in particular areas.

In respect to navigating the paperwork and the intensely difficult process that families still have to go through in terms of advocating for their children, the best thing to do is to reach out to those kinds of local resources that are gonna have a knowledge of the particular system, and are gonna be able to put a parent in touch with other parents, and in touch with advocates knowledgable of the system to talk, and to not just have huge reams of paper and manuals shoved in somebody’s face without the necessary context and explanation to understand and to respond to them in an effective way.

Sharon daVanport: Some of these new safeguards, do you feel like there’s enough in this legislation? ‘Cause I’ve always felt that most of the time when states and community schools have been able to get by with so much of this for so long, because many of the people that they’re restraining can’t speak up for themselves. It’s like you said: oftentimes, parents don’t even know that their child was even restrained, until they see the bruises. And even when they see the bruises, perhaps their child is nonverbal and can’t tell them what happened. Do you feel that there’s enough in this legislation now to where there’s something in place that would be a safety net in these situations. For them to have some kind of accountability. Is there soemthing like that in this legislation?

Ari Ne’eman: There is the structure for that. There are reporting requirements to the National Department of Education, as well as the reporting requirements to families in respect to specific incidents. There is a broader structure through which the federal government can enforce accountability and oversight.

But, honestly, as with any piece of legislation, it’s gonna be dependent on follow-through. If this is passed, and then nothing happens in terms of making it meaningful and enforcing it, then it’s not going to get much better, quite honestly.

If this is passed and there is meaningful follow-through on the part of the Administration and on the part of Congress in terms of engaging in oversight, and in terms of being willing to pull funds or to redirect funds or to force states to undertake corrective action if necessary, then I think that, yes, this legislation has what’s necessary to make a dent in this problem.

It probably will not be the last time we have to address this issue; it probably will be an issue that will require ongoing efforts to address, as with most civil rights issues. But one of the other things that’s important is that this legislation, in addition to providing for a system of oversight and enforcement from the federal government, will also be generating a tremendous amount of data that can be utilized to promote accountability from local advocates, and also can be utilized for subsequent policymaking efforts.

The reports that really got this entire process started—the Government Accountability Office report, the National Disability Rights Network report—had to rely primarily on just bringing massive amounts of individual experiences together, and there was such a great amount that it had a significant impact. But we really don’t have decent statistics as to how often this is occuring, and this legislation will give us that. So, provided that there’s the follow-through, yes, I think that this is going to be a very meaningful piece of legislation.

I would add just one more thing, too. I’m hopeful in respect to follow-through. One of the co-sponsors of this legislation is Representative George Miller, who is the chairman of the House Education and Labor Committee, which is the relevant committee within the House of Representatives that would be engaging in future investigations as to how well this is enforced, and to how effective this is being. The fact that one of our legislative champions is one of the people who will be responsible for follow-through if this passes is, I think, a very good sign.

Sharon daVanport: That’s good to know. If you know someone’s on it that is actually on the level that they’re going to be with the task of following through on the follow-through, that’s gonna be good in itself.

I have a good question here. Looks like Cory is asking if the new legislation is going to require training for temporary workers—the temporary SSAs and PSAs. [Transcriber’s note: maybe “personal assistants”?] She says as of right now, there’s not in her state.

Ari Ne’eman: I do not believe it covers those particular workers. This is specific to the education system, so that is one potential difficulty. Certainly, this isn’t addressing workers in regards to adult developmental disability service provision infrastructure.

In respect to paraprofessionals within the education system, then it will require some training for paraprofessionals, and it’s not just teachers—the people who are actually engaging in instruction—who it will require training for. But if she’s referring to personal assistants and support workers who work for the adult provision infrastructure, that’s something that would require separate legislation.

I think that’s also a very important issue. One of the things that’s an unfortunate fact in this country is that disability support workers are often undertrained and underpaid, which can cause pretty significant problems when you’re talking about the people who play a crucial role in helping improve people’s quality of life.

Sharon daVanport: Most school systems have an entire division set up that’s just for temporary workers. They hire you temporarily, to come in and fill in for somebody that’s on a leave of absence or something.

Ari Ne’eman: That’s an interesting point. Cory, I”m going to follow up on that issue a little bit, and see what can be done. I’m also going to look and see what the legislation currently says in respect to that. Let me get back to you on that, and there are further opportunities to see changes in it. I think that this is going to be the legislative vehicle which is going to be the strongest in terms of making progress on this, but there’s a committee process, and there’s a broader process.

I do think this is good legislation, which is a vast improvement from the status quo. But there are definitely things we can improve. It’s quite possible the temporary worker issue may be one of them, if it doesn’t address it already.

Sharon daVanport: TannersDad asked something that goes right along with what you said about this being really good legislation. He was asking earlier: “What do you think is the key to getting this passed?”

Ari Ne’eman: I think the key right now is we need to get co-sponsors in the House of Representatives. Quite honestly, we need them now. We need advocates, and we need members of the disability community. I’m talking now to all of you in the chat room, all of you listening elsewhere, to all of you who’ll be reading a transcript of this later. Really to anyone who will listen, and who believes in the rights of students with and without disabilities not to have to fear for their lives and personal safety when they go to school.

Go to your members of Congress and explain why action on this is necessary. To explain that there is an atrocious level of abuse going on. If you have personal stories, tell them. If you need information in terms of the facts and statistics as to what’s going on in your state and examples of what’s been going on, contact us. I can be reached at aneeman AT autisticadvocacy DOT org. The Autistic Self-Advocacy Network can be reached at info AT autisticadvocacy DOT org. This is the time for serious advocacy on this issue.

Sharon daVanport: It’s true. RethinkingAutism.com, Dana’s saying that she believes for this bill to be effective, there needs to be a lot about the abuse in the mainstream media, as well.

Ari Ne’eman: Yeah, I think that’s certainly the case. This is an old Justice Louis Brandeis quote: “Sunshine is the best disinfectant.” That’s certainly the case here. We need to shine a spotlight on these kinds of practices, and we need to shine a spotlight on the fact that we need action in terms of the legislation, and we need follow-through to make it meaningful.

Sharon daVanport: What all of us need to do, then, is get out there. We need to be contacting our Congressmen; we need to be specific with them on why we want them to sponsor this bill; we need to give specific examples, if we have them. If you don’t know of any specific examples, a lot of us will be glad to tell you some stories that we know, or refer you to some stories that you can read for yourselves, and really understand why this is so important. I think that’s good to know, Ari, that we can actually be a part of this process, and get involved as well.

Ari Ne’eman: Indeed. We have an Action Alert available on Change.org. But that’s no substitute for going to your member’s constituent office—each member of the House has a constituent office in their district—and asking to speak with a staffer or with the member. It’s worth noting that Congress resumes on January 8, so you have time if you try and get an appointment now to hopefully speak directly with your member of Congress about why this is so important.

Sharon daVanport: That would be good, to think that we could just get in there and actually speak to them ourselves. Another question: When do you estimate passage? I guess TannersDad’s asked that as well.

Ari Ne’eman: I think that’s entirely dependent on how quickly we can mobilize the advocacy community. I do know that our legislative supporters in the House, Representative Miller and Representative McMorris-Rogers, want to move a very swift passage on this. I think there’s a desire to get this addressed in this Congress, as opposed to in subsequent ones.

One never knows if one will still have an opportunity in subsequent Congresses. I would not be surprised if we see some kind of initial action in terms of really starting the committee process on this legislation as early as February. But we can’t speak for sure until we see how successful the advocacy community can be in bringing on co-sponsors, particularly in the House. This will almost certainly move in the House before it moves in the Senate. Generally speaking, legislation is much harder to move through the Senate than in the House.

At this juncture, if people wanna see this move quickly—and we cewrtainly do—I encourage them to contact their member in the House of Representatives as soon as possible.

Sharon daVanport: Is there anything about this legislation that hasn’t been asked that you want to bring out, Ari?

Ari Ne’eman: One thing I’d like to put out there is this is the first legislation to cover all schools and all students, and to address aversives, restraint and seclusion in schools at the federal level. There have been other efforts to address it piecemeal. TheChildren’s Health Act of 2000 covered some students and had some good standards that were in some respects similar to these standards. There have been things done in regards to the adult service provision system.

But in truth, there’s been nothing done at the federal level in any serious way to address abuse in schools against students with and without disabilities. This is really groundbreaking legislation. If we can move this forward, if we can bring this to passage, we are going to have a very powerful tool to bring pressure to bear on those that are engaging in abuse against students with and without disabilities.

I encourage people to keep that in mind; I will make myself available to answer any additional questions via e-mail at aneeman AT autisticadvocacy DOT org, and I also would like to encourage people who are willing to contact their representatives, to contact me and to contact the Autistic Self-Advocacy Network if they would like any help in terms of how to do that—what to say when they go speak to them.

Sharon daVanport: I wanted to mention to everyone to take a look at b-Calm Sound. They are our sponsor for the radio show. They’re actually doing two prize giveaways for us in a couple of weeks.

Ari, I wanna thank you for taking the time to come on and explain this. Like you said, this has just been groundbreaking and it’s been all over the Web. Everyone’s been talking about this, and everyone’s been wondering what it’s gonna mean, when it’s gonna happen. You were able to answer all of that, basically. One thing I learned is that we could participate in this ourselves, and write our Congressmen and still be a part of getting some co-sponsors in there.

Ari Ne’eman: Not only can you; we need you to. Thank you so much for having me on the show, Sharon.

Sharon daVanport: You’re welcome. Okay, everyone. That’s gonna wrap it up for the show tonight. We will see you guys next week.

2 Responses

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  1. Savannah Nicole Logsdon-Breakstone said, on January 1, 2010 at 7:57 am

    Thank you so much!

  2. Ari Ne'eman said, on January 5, 2010 at 10:52 pm

    Thanks for posting this! The action alert I mentioned can be found here: http://www.change.org/autisticadvocacy/actions/view/protect_children_by_supporting_the_preventing_harmful_restraint_and_seclusion_in_schools_act

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