Representing Children

One aspect of my job is to represent impoverished people in Social Security Disability hearings. Representing the children is what I love most.

Many people wonder why a child would seek disability benefits. Particularly for kids with mental health issues, some think that being found disabled by the federal government means that the child is labeled and stigmatized for life. I look at it differently.

Even though there are laws that are supposed to ensure that children with special needs get the appropriate services at school, the reality is that services are expensive, and many school districts resist providing them. Nearly all of my clients are in need of special education services, but I would say that only 1/3 of them are getting any kind of services. Many get none. Many need more than they are getting now. So one big advantage to being found disabled due to a learning problem or a behavioral problem is that it is harder for the school to deny the child’s eligibility for special services. These services can make a huge difference in the child’s future.

Most of my child clients have been diagnosed with ADHD. However, their symptoms are extreme: sudden mood swings, unexplained bouts of violence and rage, difficulties learning and remembering, as well as the typical hyperactivity. Often, their behavior and concentration seem unaffected by the medications prescribed for ADHD. The judges before whom I represented some of these children would issue decisions in which they blamed the mother for not giving the child his or her medication, because, they believed, there is no way these symptoms would persist if she had.

It seemed odd to me that so many mothers would be so forgetful or negligent, so I did some research. I learned that lead poisoning causes all of those symptoms, rage and sudden mood swings in particular. Lead poisoning cannot be treated with medication, or, it turns out, at all*. The US Centers for Disease Control recently revised its criteria for when blood lead levels are considered to have poisoned the child. A year ago, a blood level of 10 micrograms per deciliter of blood was considered “of concern.” Now it is 5 micrograms, and in fact, the CDC states that there is NO safe level of lead in the blood for anyone; lead stays in the child’s body forever, in the bones and teeth.

At every hearing, I provide the judge with numerous articles from medical journals about the impact of lead poisoning on a child’s mood, behavior and learning ability. So far, I have met with zero success in convincing the judges that this is something they should factor into their evaluation of the child’s symptoms. They continue to rule that the child has not been properly medicated. I will continue trying to educate the judges, and appealing the decisions when my clients are denied benefits.

That brings me to another challenge in this type of work. Most of the Social Security Disability judges are middle class or upper middle class people, who have had an abundance of opportunities and significant education. It seems hard for some of them to understand the challenges of living in poverty and to remember that it’s not a lifestyle choice. Often, these families are impoverished because of a family history of significant disabilities over many generations which were never adequately treated, or because the child I represent keeps getting suspended or expelled and the parent can’t maintain a job if he has to leave work three times a week to collect his kid from school.

The hearings take about 30 minutes. The judge has to eyeball the child and figure out what’s going on in that brief time, which is impossible, in my view. I provide reams of school and medical records as evidence, but that face to face meeting between the child and the judge is key. Thanks to television, my little clients understand that judges are important people whom they need to respect. Kids who are scribbling with markers on the ceiling while swinging from the light fixture in the waiting room before a hearing will come into the courtroom, fold their hands and say, “Yes, your honor,” “No, your honor,” with nary a wiggle or an outburst. A lawyer has to prepare her clients for the hearing, but it’s difficult to instruct an 8-year-old to do his best to act up the way he normally does at home and at school!

I keep trying to find ways to get the message to the judges that my clients face many obstacles in life even before we get to their learning disabilities or mental health issues. It isn’t just a matter of knowing the law; an advocate for the poor also has to navigate the huge gulf between the life circumstances of the applicant for benefits and those of the person who gets to decide his or her eligibility. These challenges are what make the work so interesting. I love doing it.

I’d love to hear from anyone who tries to bridge cultural/social divides in their work.  Any ideas to share?  

*Except in cases of extremely high levels, where chelation therapy may be used.

12 thoughts on “Representing Children

  1. We should definitely talk sometime. Thank you for the encouragement. I often wonder how I would be received by the “parents bar,” having worked on the school board side for so long. But I know I would not be the first to do it. I am familiar with Sheff. I remember when the case was filed – I think I was in 10th or 11th grade myself, at Southington High School. Milo Sheff is about my age, I believe. I think the culture has changed to some extent, but obviously there is so much more work to be done. Witness the rise of school funding litigation, generally. The whole state of education feels like a whack-a-mole game: you work on whacking one piece of it, and another pops up in a different place. There are too many areas that need attention, all of them important, but you can’t possibly make meaningful progress on all of them at the same time. So I understand that feeling of just plugging away at one piece of it.

  2. Randi

    At the risk of asking the obvious, have these children been tested for lead? Is there a diagnosis? With sufficient evidence you could appeal. John is a wiz on USDC appeals.


    1. Hey Doug. I appeal every case I lose, pretty much, to the Appeals Council, and get a lot of remands. When the AC didn’t remand 2 cases last year, I did 2 USDC appeals, both reversed and remanded, both with EAJA fees! That was fun, although VERY detailed, time-consuming work going through the transcript. Now i have to do the hearings again, of course — one of them for the THIRD time. I love it, though.

      The lead thing is so off everybody’s radar and I don’t know why. SOME kids are tested, not all (although EPSDT mandates that they all should be). So the results come back saying 5 micrograms per deciliter. I know that even this small amount should be considered lead poisoning in evaluating a kid, but not the ALJs! “There is nothing in the record to indicate the child has a diagnosis of lead poisoning.” Right. That’s because no one knows what lead poisoning is or what it does to a kid, and more importantly, no one knows how to fix it, except to have the family move to a place with less lead paint in it, which doesn’t fix it, only lowers it, because lead stays in the body forever.

      That is why I started submitting the articles. Without a doctor stating “This kid has lead poisoning,” which they don’t seem to do, how else can I prove that 5 mcg per dL is significant? So the articles and the handout from the CDC should do it, right? Well, maybe someday. It’s one of those huge paradigm shifts that will take some time to filter into the brains of the adjudicators. I remember once discussing an article with you about this — that perhaps lead was the cause of most LD diagnoses. It was a long time ago!

      Thanks for your comment.

    2. Did you notice my allusion to your wonderfulness in the description of how everything changed in my SpEd battle when you came into the room? I will forever be grateful. Btw, that child is almost 27, a manufacturing engineer, and became engaged to a lovely woman last night!! Without your help, he could have turned out so differently — I can’t even bear thinking about it.

  3. Oh, I almost forgot to comment on the problem of kids getting expelled or suspended continually. I have also seen a lot of this, and I see the problem of the endless cycle of already impoverished working parents who can’t get the time off work to take care of their kids during the school day, or who lose jobs for this reason. And I do suspect that many repeat expellees are kids who are badly in need of social services, special ed services, or some combination thereof. As you are likely aware, a child with a disability, or suspected disability, cannot legally be removed from school for more than 10 days without the PPT convening to address the underlying reasons for the behavior in question. But I think in reality a lot of kids are falling through the cracks due to underidentification of disabilities. It is a huge problem and I wish I knew the simple solution to it — there just doesn’t seem to be one.

    1. In Waterbury, they suspend kindergarteners! Or put them in closets for a time out! What could a kindergartener possibly do to warrant suspension? And though there are wonderful laws in place to protect kids and families, it’s always a shock to face that they work only when people a) know about them and b) have the wherewithal to use them.

      When I tell my family stories about badly behaved judges or opposing counsel, they all gasp and say, “But isn’t that against the law???!?” Then I have to explain that the law is not self-executing, and people do bad things despite great laws, and the lawyer has to decide minute by minute whether to point out the violations, which means risking the wrath of the judge, which means possible retaliatory action towards one’s client! In an ideal world, we would all say, “Stop the proceedings! This is a violation of due process! I’m off to file a complaint/get an injunction/report you to the authorities!” But I have sat in many settlement conferences (where the judge’s goal is always to make the case go away, by talking REALITY to the two sides — i.e. big hints about how he would likely rule on the issues) and had the judge say to me, “Look, forget about the Constitution. It’s irrelevant.” When that happens, I kind of lose my idealistic faith in what the law should theoretically be able to do and instead try to figure out what I could possibly salvage from such a situation. It can be discouraging. This is making me think of a good topic for a post — what the laws are supposed to do and what happens in reality!

      1. That is a good topic. It would happen on the school board side too. Superintendents don’t understand why a non-tenured teacher can be let go, and then try to get her job back by way of a discrimination complaint at CHRO (“but she’s non-tenured!”). And in the special ed mediation context, at least in this state, it’s often cheaper to just enter into a settlement agreement to pay for a portion of an outplacement, even if it’s not the LRE, because it makes the parents happy and gets them to drop a due process complaint and avoid a costly hearing. I think a lot of time is spent educating clients on all sides of all aisles on the way things actually work, versus the way things are supposed to be.

  4. Randi, first of all, let me just say that I am loving the connection we have as two attorneys who work in the area of disability rights and children! So I am totally feeling the lawyerly love right now, lol.

    This post was very educational for me, and it really does ring true when I think of special ed cases I have been involved with over the years in my prior role as a school board attorney. Poverty is a huge issue to begin with, and throw in the mix a family history of undiagnosed and/or untreated disabilities and you have a gigantic social crisis on your hands. To address your point about school districts resisting providing services due to the cost (and to continue our conversation along these lines from my last post), I think this is a tricky issue. You know and I know, and (hopefully) most special educators know, that the districts must provide a free appropriate public education in the least restrictive environment. It’s that LRE question that trips everyone up. I have seen cases where the parents are arguing for a more restrictive (and costly) environment, i.e., the private school outplacement, and the district resists for the reason that they feel they have the resources and ability to educate the child appropriately in-district. But I have also seen the situation where the district actually recommends an outplacement, which will cost them more, but the parents are the ones who want to keep the child with his friends at school, and resists the proposed change in placement, saying it’s because the district doesn’t want to deal with the child and his particular needs. I won’t even try to make a blanket statement here about who tends to be right in which situation and why — it’s impossible to do. Suffice to say that this area of the law is just so rich with fascinating legal issues, and I feel privileged to just be a part of it. Sometimes the child’s future is, quite literally, in your hands, and I’m sure you feel that way at times too. That’s another reason why, as you know, I have recently come to the conclusion that my days as a school board attorney are coming to a close and it’s time to jump in and start representing families!

    Finally, compare this situation with kids seeking sped services or SSD benefits with adults coming out at work with a hidden disability or also seeking eligibility for benefits. I can understand why an adult who feels reasonably able to cope with the disability at work may choose not to reveal it, weighing the options carefully and deciding that it makes more sense in one situation as compared with another to keep the disability a secret and just make do. But when it comes to children, they are relying on a trusted adult – mom or dad, an advocate or attorney, a friend – to do what’s right for them. The burden is enormous but the work is some of the most important there is … so my hat is off to you and all those parents out there of kids in these situations!

    1. I feel the lawyerly love too, Melanie, and it’s great! First let me say that if you do decide to represent families, your experience being on the other side will be SUCH a great tool for you and your clients. I think that’s very exciting. I agree that it’s a fascinating area of the law, and it’s so crucial to get it right for the kid at an early age when it can still make a difference.

      As I said in my response to your post last week, so much about seeking special education is counterintuitive to every instinct of a parent. So it’s almost as if the parents need to be reprogrammed to understand the topsy-turvy world of SpEd advocacy. As lay people, we tend to trust schools, school psychologists, etc., but sometimes that is not wise. Moms and dads have to become skeptical and distrustful of school motives, which is a horrible feeling.

      I apologize for my previous blanket statements (I tend to do that a lot) but my experience is all in urban school districts where there are impoverished families and worse, an impoverished atmosphere in which to grow up. We all take for granted having books around the house and seeing the adults who raised us reading for fun, not to mention reading to us as kids. This is not the case everywhere. It’s such a complicated issue — the intersection of generations of poverty and lack of opportunity with city schools having bigger challenges and not enough money. It’s way beyond my abilities to figure out the answer (although I do like the idea of universal preschool, espoused in the State of the Union address), so I try to make a change one person at a time through my disability work and also through Medicaid advocacy, to help the kids get testing and treatment that may appear educational in nature but should still be covered by Medicaid. Another constant battleground!

      However, although my experience at work is in urban areas, my personal experience with my younger son was in a suburbany-quasi-urban school system. I still found incredible resistance to figuring out what my son needed. Once my attorney, who has a state-wide SpEd advocacy reputation, came to the PPTs, everything went smoothly. It should not be that way!

      The school system then offered my son a self-contained classroom in one of two schools. One was in the predominantly white upper middle class northern end of our town, and the other was in the quasi-urban working class southern part of town. I could not believe the difference between the two schools when I went to see them. How can these schools be in the same small town? So there are bigger challenges to providing a free appropriate education in the least restrictive environment than simply cost. There is also a deeply built in classist and racist culture to conquer. There are stereotypes and lowered expectations to overcome. In CT, which has 169 towns and cities and almost as many school systems, the disparity from one town to another and even from one street to another is shocking and upsetting. I’m sure you are aware of the Sheff v. O’Neill case, filed in 1989, which was supposed to fix this problem. 24 years later, there is no change. I could get really depressed about this if I allowed myself to dwell on it, so I try to just keep plugging away at my little part in this massive unsolvable problem.

      By the way, I chose the school in the southern end of town. My son got wonderful attention and assistance but experienced some wild days in that classroom because of the random mixture of learning disabled kids that schools throw into their one self-contained classroom. I love the diversity in my town and I’m glad my children had the chance to experience it, as I did not have that chance until I went to high school.

      Melanie, I hope we get to talk more about this some time. With all the young babies and toddlers that many CTWORKINGMOMS have, maybe we will get a chance to help some of them through the maze as they reach school age. There are so many different types of learning challenges, and they manifest themselves in all sorts of different ways in different kids. I’d love to try to eliminate that stigma you mentioned that people still face when they “come out” re: their disability.

  5. i no thoughts on your question but i do have a special needs brother and my parents have to jump through hoops to get him what he needs. my mother is constantly sent on wild goose chases, told by more than one person the totally wrong thing, and the state has lost paper work on them numerous times. my parents are not well off but they are not poverty stricken either. there are great services out there but you have to fight for them. thanks for being in the corner of the kids. with some of the people in this state making things so complicated and causing so much work on my parents, we need people who are really there for the kids.

    1. Thank you for your comment, Jessie. You made me feel great, but I feel so sad about what your parents have to go through just to get help for your brother. There are laws that protect him and are supposed to guarantee that he gets the education and services he needs, but as you say, the system is very complicated.

      This is a website that has collected a lot of resources and the names of helping agencies in one place:
      Once you get to this page, you will see “Links” and “Resources” and some other buttons to click on. Maybe there is some help there for your parents and brother. I hope so. I wish you all good luck.

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