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).
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!