Where Can You Turn? (Part I)

One of the comments/questions I get frequently centers around where to find help with Early Intervention (EI) or school district issues. Especially if parents have first tried working with their child's EI service coordinator or IEP team and doesn't seem to be happy with the answers or outcomes.

Although each state - and even each district - is different, I do have some suggestions that have served other families (and at times, me!) well... I didn't have time to put them all in one post, unfortunately. But I promise I will continue to add new information to subsequent posts (hence the Part I in the post title).

ADVOCATES

No, I'm not talking about the kind you pay (from what I've heard from other parents, they tend to be hit or miss... but if you really need a professional advocate, ask around to find out who is really best to help you in your situation).

Federal law requires independent oversight to ensure people with developmental disabilities, and their families, receive the services and supports they need. In California, the State Council on Developmental Disabilities (SCDD) was established by both state and federal law as an independent state agency to meet this requirement. From their website:

Consumers know best what supports and services they need to live independently and to actively participate in their communities. Through advocacy, capacity building and systemic change, SCDD works to achieve a consumer and family-based system of individualized services, supports and other assistance.

To accomplish this, California has 13 Area Boards, we happen to live in Area 3. I'm not sure what the system is in other states, or what they are called, but now that you know the general idea, hopefully you can look into it in your area.

So, if you ever have a question about special education law, a decision made by the EI program, or you simply need help understanding the system or your rights, you can call them. They are there to help you advocate on behalf of your child (or adult, or whoever has a DD) to ensure their rights are upheld. Our Area Board 3 representatives even go to IEP and IFSP meetings, if needed. Often times they can point you in the right direction after a simple phone call or email exchange. You can find basic contact info here for all the Area Boards, or google the name of your Area Board to find their website. And they (at least Area Board 3) hold workshops for parents to learn about IEPs, how to advocate, a child's rights, etc.

Bottom line, this is one of the first places I suggest parents turn if they feel they need help. And it's free :)

SPECIAL EDUCATION LOCAL PLAN AREA (SELPA)

Sorry, this one is specific to CA... but please leave a comment if you have information about something similar in other states! I'll check it out and add it to the post.

In California, all school districts and county school offices were mandated to form consortiums in regions (called Special Education Local Plan Area, or SELPA) to provide for all special education service needs of children in each region. So, each SELPA created a local plan describing how it would provide special education services. From their website:

SELPAs are dedicated to the belief that all students can learn and that special needs students must be guaranteed equal opportunity to become contributing members of society. SELPAs facilitate high quality educational programs and services for special needs students and training for parents and educators. The SELPA collaborates with county agencies and school districts to develop and maintain healthy and enriching environments in which special needs students and families can live and succeed.

I have heard from many families that talking with somebody in the SELPA often is very helpful.

A FEW ONLINE RESOURCES TO GET YOU STARTED


There's no way I can provide an exhaustive list of online resources, but for now I will at least point you to some of the websites I (and others) have found helpful.

IDEA 2004 - this is the portal from which you can access both Part B (ages 3-21) and Part C (birth-2) of the federal Individuals with Disabilities Education Act (IDEA). Unfortunately, the Part C section is still not available, but you can find some basic information about Early Intervention here.

Wrightslaw - a special education law website that covers federal and various state laws; you can even buy books, find case law, and get updates via their newsletter.

Special Education Rights and Responsibilities (see chapters below) - this manual is available in chapters online and provides information about both U.S. Department of Education regulations and California Education Code... a big thank you to my friend Julie who sent me chapter 3 at just the right time to give me some extra support :)

Information on Evaluation/Assessments - Chapter 2
Information on Eligibility Criteria - Chapter 3

Plain language publications (sorry, these are specific to CA only):

Turning three years old - English & Spanish
Understanding special education services - English & Spanish
Moving on: Transition to adult services workbook for parents - English only

HOPEFULLY THIS GIVES YOU A STARTING PLACE


Like I mentioned previously, I will certainly follow up on this post as I can. I have lots of other resources to share, but this is the easiest starting place.

Feel free to let me know what some of your most useful resources are and I'll take a look. I'm always happy to find and share good information!

So here's the thing...

I'm just gonna lay it all out there... but first grab a stiff drink, or some wine. This post turned out a bit lengthy :)

We declined the assessments by the school psychologist.

*Gasp*

Okay, so maybe that's sort of anti-climactic and not a big deal. Maybe you did more of a "Huh?" or "So what?" instead of a full-blown gasp... but I assure you, some folks gasped.

I figured our decision might raise some eyebrows among the education community, and even among some parents who have children with special needs. Keep in mind, though, that the school district needs parental consent before anybody can legally assess/observe a child. That means you don't have to consent to specific (or any) of the assessments. So, if you decline, they can't/won't do that assessment (although, in CA that might change if a bill passes requiring the school district to take parents to due process if they refuse assessments/services, but that's a different post). Of course, you can't decline a speech assessment and turn around and say you want speech therapy. So I wouldn't recommend being all willy-nilly with your declinations. But I digress...

All this simply means is that Sheridan - or, more accurately, his pain-in-the-ass parents - no longer fit into the traditional, expected, routine IEP process.

And let me say this before I go on: despite some early-on frustrations (i.e., the school district - for a very long time - did not share what preschool programs existed; we wanted to visit a few example programs so that during the IEP Gary and I could make an educated, collaborative decision with the team... they did eventually identify a few programs for us to visit)... so, despite those early frustrations, our two meetings with district personnel have gone really well (the first was his transition meeting about 4 weeks ago, the second was Sheridan's academic/pre-academic skills assessment). All children have the right to have their parents as equal members (with school district personnel) on their IEP teams. And I believe that Sheridan's outcomes will be substantially more positive if we all work together collaboratively, so I went in to this process with that collaborative, cooperative spirit. And so far, so good on all accounts!

So, the biggest question y'all probably have is: Why did you decline the psych assessments?

It's not an easy answer... but I'm gonna give it a try. And I provide way more details than you probably care to read about, so feel free to skip around a bit, but after receiving so many comments and emails about how useful this level of detail is, I'm happy to provide it. I sure wish I had it in advance...

1. Sheridan does not need a psycho-motor evaluation. The school district offered us OT and PT evaluations, so the psycho-motor evaluation would be duplicative. No need for that. We believe the OT and PT will provide better assessments anyway, given that they are licensed specifically in those areas of expertise. For those who are curious, here's the description of the psycho-motor eval: These observations and tests measure the ability to coordinate body movements in both small and large muscle activities. These tests may also measure visual perceptual skills. The assessment includes observations and testing performed by the following professional staff: [the School Psychologist box is checked]. 
2. Sheridan does not need a Social/Emotional/Behavior Status evaluation. Not at this moment, anyway. We don't have any concerns in these areas, unless the school district has some kick-ass, magical service that gets rid of the terrible twos. But I doubt that, because the district would have way more money if they tapped that market. And besides, Sheridan's twos aren't nearly as bad as other kids'. [*****this is me knocking on my MDF, fake wood desk*****]
3. So, that leaves Intellectual Development (ID) described as: INTELLECTUAL DEVELOPMENT (Including means to assess when standard tests are considered invalid): These observations and tests measure the ability to utilize information to problem solve in both familiar and new situations. These tests also reflect learning rate and assist in predicting how well the individual may do in school. Verbal and non-verbal tests may be used as appropriate. These tests may include basic psychological processes of auditory, attention, visual and sensory motor. The assessment includes observations and testing performed by the following professional staff: [the School Psychologist box is checked]. And here's some of the reasons we declined the ID assessment (remember my previous disclaimers that I'm not a lawyer and I don't even play one on TV? Those come in handy here)...

• The ID assessments are not valid at Sheridan's age. Even the school district noted that the available assessments "aren't very accurate" for young children like Sheridan. Even if I wanted to do an assessment, I would never consent to an assessment that is not going to provide a valid "picture" of my son's abilities. For example, many assessments require a child to speak an answer (I'm not saying that the exact instrument the district wants to use requires this, this is simply an example), so if Sheridan cannot speak the answer (which often he cannot given his Apraxia of Speech), he might not get credit for knowing something. In other words, in that example, the assessment isn't just measuring Sheridan's knowledge or abilities, it's measuring his ability to communicate his knowledge/ability. So, the bottom line is, an assessment is only valid to the extent that it assesses/measures what it intends to measure, and nothing else. Everything I've read about ID assessments at a young age indicates they have validity issues. And the school district agrees with this point, so I will move on...
• The ID assessment is not required to establish eligibility. As two quick examples, I sat in on two different IEPs this past spring (as a note-taker) - both children have Ds - and neither child qualified for special education support via their ID assessments. Their scores "weren't low enough" to qualify for the "mental retardation" criterion, so the IEP teams found other, general categories to qualify the children. Also, according to federal law you can establish eligibility for special education support through any number of categories, "mental retardation" is just one of them (and, yes, eventually that category will be re-titled "Intellectual Disability" soon). The State of California added additional categories, as well. So, the ID assessment is not the only way a child qualifies.
• For Sheridan, there is no value added by doing the ID assessment. The result of the assessment is merely an educational determination (or diagnosis) of cognitive status. The assessment has no bearing on any functional outcome for Sheridan. It doesn't provide any additional service or therapy. Functionally, it does nothing. Provides him with zilch. So, the assessment exists (in Sheridan's case) merely to provide the educational determination. Which means every time somebody at his school, in the school district, a new therapist, anybody opens his file they will look at this determination and formulate an opinion of him. Which brings me to our biggest reason...
• It's a matter of human dignity. It's our responsibility to advocate on Sheridan's behalf until he is able to take over the job himself. And a key function of our responsibility is to respect Sheridan as a person. A whole being. And our belief is that he as the right to the same dignity as any other person. Labeling him based on cognitive assessments (or providing an educational "diagnosis") simply for the sake of checking a box on a form is demeaning. You do realize what they are looking for, right? If a child performs below average (or later when standardized IQ tests are administered and the IQ is anywhere below 70) they are diagnosed with "mental retardation" (again, this will change to Intellectual Disability soon, but the actual words don't matter to me). The sole reason that diagnosis is needed, as far as I can tell in Sheridan's case, is simply to check a box and say, "ok, this kid is eligible for services." It's a label for the sake of a label. 
• And by the way, he qualifies (at ages 3-5) under California's "Established Medical Diagnosis" criterion. That makes the assessment a moot point. An established medical disability  is "a disabling medical condition or congenital syndrome that the IEP team determines has a high predictability of requiring special education services." And remember that special education services includes things like speech therapy, OT, PT, etc., so it's not just limited to a "special day class" or something like that.

Ok, some counter arguments and questions...

1. Do I think ID assessments are inherently bad? No! In fact, I think they can be - and are - useful for many students. 
2. Lisa, you're delusional and afraid of the truth about Down syndrome. Anybody who knows me knows how incredibly ridiculous this assertion is. And anybody who knows Sheridan is aware that there is absolutely nothing to be afraid about in terms of who he is. I can't believe how many people - including advocacy organizations - told me that we are hiding from Down syndrome and we're deluding ourselves. Funny how they don't see our viewpoint as fully accepting Sheridan's diagnosis.  
3. Sheridan is doing SO great... why not do the stupid assessment and prove all the stereotypes about Ds wrong? As tempting as that is, it assumes any assessment would be valid. But let's say, for argument sake, that there was a valid assessment... Sheridan's abilities (and challenges) speak loud and clear through all the other assessments (e.g., his academic skills) and his previous reports from his Early Intervention providers. THEY know Sheridan better than anybody else at this point (from a "services" standpoint)... most have worked with him for a very long (his PT has been with us since he was a newborn!). So, the new assessments and his final Early Intervention "graduation" reports will provide a clear picture of where Sheridan is. All these combined show how kick-ass Sheridan is doing. The ID assessment wouldn't add anything new.
4. But, Lisa, don't you want the school psychologist to at least meet Sheridan so he can charm him/her? Don't you want the school psychologist to know Sheridan given that he/she will be on the IEP team?  I admit I hadn't thought of this question until my good friend Jen asked me. It's a really good question (thanks, Jen!). And as much as Sheridan likes knocking the socks off of people (especially the ladies, I might add), we aren't going to agree to an evaluation or observation simply so they can meet. Although I admit we have to do more leg work to better understand the role of the school psychologist on the IEP team - especially in light of declining any evaluation - we just don't see the need. 
5. Do you have some kind of hell-bent animosity toward psychologists? Hahahaha. No. In fact, much of my doctorate training was in social cognition (social psychology). I happen to like many psychologists very much :)  It has nothing to do with the school psychologist, per se. It has everything to do with assessments themselves, the goals of the assessments, and our philosophy about raising Sheridan. 
6. Sheridan already has a diagnosis/label of Down syndrome, so what's the big deal if he has another diagnosis/label on him? The fact that he has a medical diagnosis is different than an educational determination. We're talking about a "diagnosis" from an educational perspective, made by an educational team (the IEP team). And, as those of us in the Ds community know, simply having a Ds medical diagnosis means that many people will view, treat, and make assumptions about Sheridan based on misinformation and stereotypes. I see no need to add another layer of labeling to that mess.

Okay... now I'm interested to hear what you think about all this.

Speaking of Lucky...

Yes, I'm lucky to have my Sisters here in the Sacramento area, but I'm just as fortunate to have so many people I consider friends IRL (In Real Life) that I met through blogging. And every once in a while I'm really, really lucky and I get to meet them face to face (I'm always a little nervous when I meet blogging friends in real life - I think I'm better at sound bites via email and through my blog - and I secretly hope people like me and don't think I'm too weird or something).

A couple months ago I had the privilege of meeting Ahhhh-ZZZEEEEEEEEEEY (Ozzie, that's how he says it) and his family. I can't even tell you how much I love them. The Niblock's have a special place in my heart, and Dan is one of the best friends I could ever ask for (he's also an amazing advocate and incredibly talented).

It's because of my weekend with Ozzie that I learned the sign for dinosaur, and Sheridan now signs it all the time (with an accompanying roar/"ooooo" every time). Also thanks to Ozzie, at random times throughout my week (say, while I'm showering, or trying to fall asleep, or trying to stay awake during a meeting) all of a sudden I hear, "let's riiiiiide the dinosaur train!" Thanks, Ozzie, I don't know how I lived without that catch phrase.

I hope to meet more of you IRL :)  Especially if you treat me like a Queen as The Niblock's did... um, a sight-seeing and culinary tour of their hometown? Check! Late nights drinking beer and watching Bob Ross re-runs? Check! And thank you very much for that... you're my kind of people! ;-)

Love you all :)

The beautiful and very talented Layla... she has the best imagination, sense of humor, and is SO much fun to play with. Layla, I wear my button ring you made me all the time.

If I could surround this image with cute little hearts and stars I would... Ozzie is the sweetest (and most energetic!) little guy (he would even give Sheridan a run for his money - I don't think Ozzie has an off switch). And, well, Dan simply rocks.

Dina is amazing. And stunningly beautiful. I enjoyed getting to know you so much better! :)

The First School District Report is In

I just received Sheridan's first written assessment report from the school district: the pre-academic and academic skills assessment (I provide more detailed info below for those who are curious what such an assessment looks like). In two pages I found only 4 corrections I requested be made. Not bad (but we believe they are important corrections, so we'll see how it goes). 


I appreciate that the Resource Specialist is working with me... she sent me a copy of the report to review before turning in the final report. I believe this is how it should work (e.g., if I have a question or a correction we identify it before the IEP meeting) - we're all on this team together! :) 


As far as her recommendations or any goals, she simply wrote, "Recommendations will be made at the IEP meeting." Of course, I would prefer to see her suggested goals in advance (although she did tell me verbally at the end of the assessment what she thought might be good goals and she asked for my input). Writing goals is part of the IEP so I'm fine with waiting to discuss as a team :)


What was Included in the Assessment


The pre-academic and academic skills assessment (she used the Brigance Diagnostic Inventory of Early Development II) was sort of a global assessment that covered the following areas: (keep in mind some of this was based on parent report, and his speech therapist who happened to be present for part of the assessment weighed in a few times, too, to verify I was telling the truth :) 

1. Fine-motor skills - he can squeeze a squeaky toy (that one kind of cracked me up, honestly), put objects into a container, use a good grasp and voluntarily release, take objects out of container, grasp objects easily and automatically, unwrap loosely wrapped items - think: give him a granola bar that I've already opened - he can tear through that sucker and get what he wants out of the wrapper :) - deliberately pour/dump objects from a container (oh boy, can he), stack 3-4 boring one-inch cubes (my commentary, not verbatim from the report), scribble with crayons without losing contact from the paper, hold a pencil with his fingers (not fisted), imitate scribbles in vertical, horizontal, and some circular directions. By the way, yes, this is all OT stuff, and Sheridan will have an OT eval, as well. 
2. Gross-motor skills - Sheridan can stand without support, attempts to jump without hands held but feet do not leave the floor yet, walks well, walks sideways (she wrote 2 steps, so this was correction request #1: he can walk more than 2 steps... at least 5-10 when he is skirting an obstacle), he runs with some falling - that boy thinks he's Carl Lewis, Michael Johnson, and Jesse Owens all wrapped up together... but with less coordination at high speeds :) - he walks backwards, stands on his tip-toes (holding on for balance), and walks up and down stairs with hand held. Yup, you guessed it, he'll also have a PT eval by the district.
3. Receptive and expressive language - he can expressively (meaning say) identify pictures of common objects using signs and approximates the word (correction #2 was requested here: she said 22 out of 27 objects based on Sheridan's speech therapist pointing out that he can do up to 26 or 27 of the 30 Kaufmann cards he's working on - so that's a finite number of cards, but Sheridan can say (sign/approximate) likely around 200 objects/words - he receptively (meaning he understands) identifies pictures of common objects, 20 body parts (he knew more than that but some he knows aren't on their list), he can follow three-step directions (this was correction request #3: her report only said one-step directions but I pointed out that during the assessment I asked Sheridan to (1) go get his "I Spy" book off the shelf, (2) bring it over here, and (3) sit down so we could read it together), he uses polite phrases such as please and thank you, he signs his name (correction #4: he doesn't sign his name, he says it). He'll have a speech eval, too.
4. Academic - he gives one or two objects when asked, he counts to five with one-to-one correspondence (he pointed to each of five frogs and counted them correctly), names 9 out of the 11 colors on the list (he doesn't name grey or pink much) and points to 10 out of 11 colors (he can identify pink if asked), he matches colors, identifies pictures by description, identifies about 15 sight words, when given a book he turns it right side up and turns the pages one at a time, he looks at pictures selectively, points to pictures of interest, points to pictures of common objects when asked, labels pictures of common objects using signs and approximations.
5. Daily living - Sheridan drinks from a cup/glass held in two hands without assistance, uses a straw, working on drinking from open cup, he returns the cup to the table after drinking, uses a spoon without turning it upside down with little to no spilling, uses a fork, working on using utensils with fingers (still uses fist mostly), he assists with dressing (meaning he puts his arms in, steps into pants, helps pull up underwear, etc), removes some articles of clothing and his shoes, working on putting on his shoes and socks, uses potty but may need help with clothing, lets parents know when he needs to go potty, completes toileting routine with some assistance and reminders.
6. Work-related skills - he opens doors or cabinets without knobs, can open a door with a handle, helps put things away, exhibits signs of developing independence by having the attitude that “I can do it myself” (boy, does he EVER!), watches TV for twenty minutes (he watches 1-2 episodes of Signing Time a day), engages in activities for five to ten minutes, participates in songs and finger plays during circle time activities that last about ten minutes.
7. Social skills - Sheridan dramatizes adult activities, associates objects in play, watches other children and may attempt to join, engages in domestic play imitating an adult activity (e.g., cooking, talking on the phone), gives affection to family members, shows an interest in the activities of others, shows (A LOT of!!!!) pride and pleasure in new accomplishments, explores the environment and returns to the caretaker as a secure base, watches the faces of other people for clues to their emotions or feelings, likes to perform for others (seriously, he's a performer!), and takes pleasure in doing simple favors for others.

The report/assessment does not result in a score, rather it provides a general sense of where his "academic readiness" is so we can create goals at his IEP. For example, Sheridan was not interested in the activities the she brought, so we used his own activities (and some his speech therapist had). So, one goal the Resource Specialist suggested she might write is, "increase ability to complete assigned tasks" because he didn't do much of that at her request. In his defense, he simply wasn't interested in some of her requests. In her defense, it is important to follow through (he does complete tasks when he wants to, and I'm not in to forcing him to do something he doesn't want to... BUT, he does need to increase his follow-through when needed... like clean up, complete a task he chose, etc.). So, in the end, this is a decent goal, I think. Another goal will likely be around math skills (increasing his understanding of math concepts to higher numbers - I've never been one to teach him to count to 10 or 20 simply for him to memorize the sequence... I specifically avoided that and instead have worked on lower numbers to ensure that he understands the concept and quantification of each... he can definitely do 1-5, and I'm pretty sure he can do more, so increasing it up to at least 10 over the next year is a great goal to work on early math skills). 


So, that's where we are... just thought I would throw this out there for other families preparing for, looking forward to, or in the throws of transition. As usual, I'm happy to answer questions if you have them :)