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!

IFSP, SureSteps, and Birthday Planning, Oh My!

IFSP

We had Sheridan's 18-month IFSP a couple weeks back. Funny thing is that I typically spend a TON of time getting ready for it, prepping, etc. and this time I simply put our list of goals together for each area of development we're working on and that was it. I always share his goals a couple weeks in advance with his therapists so that we can develop his final IFSP goals together - and I always send them to his service coordinator, too, so they become an official part of our IFSP. It's an approach that works well because then the service providers know what we are prioritizing, they can talk to us about what modifications we might want to consider to his goals, etc.

We weren't looking to add any new therapies (he already has everything he needs between our regional center and private pay services - a.k.a. music therapy). It was actually a relaxed, fine meeting. I did request that the regional center cover a therapy that we are private paying for (the law changed in August 2009 and music therapy is no longer covered except under special circumstances - we believe that Sheridan's group music sessions are critical to his social-emotional development... they are truly the one thing that is making a difference in Sheridan's ability to interact and be around other children). This brought me to tears y'all - Sheridan has come a long way, but still has a LOOOOOOONG way to go. This is critically important to his development... right now we're focused on preschool in 17 months and he's building the skills he needs to be able to participate fully in preschool and other activities with his peers.

We  knew our request would be denied - indeed, we heard back from the regional center supervisors that they would not cover it because it is an "experimental therapy" and as such we had no recourse (we cannot appeal the decision and take it to due process. We knew this would happen, but we felt it was important to send the message that this is a valuable service. And I'm not exaggerating here, folks... our weekly group music sessions have truly been the key to helping Sheridan work on being around other kids.


SureSteps

A few weeks ago Sheridan was fitted for SureSteps.

Different people have different philosophies about using orthotics, but here's where we are:

• all babies/toddlers develop (standing and walking) with overpronation; it typically peaks around 3 years of age and then they develop out of it and have normal pronation
• children with low tone and/or lax ligaments (obviously, that includes children with Ds) might not peak until (much) later; also, they might not "come out of it" without assistance
• notice I said "might not" - not that they "will not" :)
• if a child develops a problem with overpronation, it requires correction
• if, however, a child uses orthotics you can do a great deal to prevent the later overpronation issues (and, after talking with Sheridan's PT about this, she said it is easier to prevent these problems than try to fix them later)
• so, even though there is no certainty that Sheridan would develop overpronation issues, we decided we would use SureSteps to prevent a potential issues rather than risking being in a situation to have to fix it
• my only worry was whether or not he would become dependent on them - every PT I've talked to about them said that children typically don't have issues transitioning out of them

So, Sheridan got fitted and he's been wearing them every day. Don't get me wrong, his standing and cruising was coming along nicely, but it's nice to know he is getting the support and proprioceptive feedback he needs to be even more successful. Check out his new digs (they are available in lots of different patterns/colors, but Sheridan is such a fashion plate that I chose something that wouldn't "clash" with his cute clothes :)

The Big 2

Although my and Gary's birthdays are coming up first, I'm already focused on Sheridan's in August. LOL. Not that I'm planning some major toddler extravaganza :)  it's just that I know the last couple weeks of August are busy for so many families. Summer days and weekends fill up fast. And then families turn their attention to getting ready for school or the last summer vacation. So, I'm trying to at least get a sense of what I'm planning (which I'm sooooo close on!) - and more importantly the date - so I can ask Sheridan's buddies to save the date. You know who you are :)