At the very top of my list of things to do now that we’re in New York, immediately followed by house-hunting and catching up on my consumption of everything bagels, is getting services in place for Alex. Unfortunately for us, Alex has just reached the age where exactly none of the steps for us to take are clear cut.
Prior to referring Alex for an evaluation a few months ago, I had almost zero knowledge about the early intervention (EI) program or the transition process going from EI to preschool special education services. I’ve worked in elementary schools for close to 4 years (1 year internship in NY; 2 1/2 years in Wisconsin) so am pretty familiar with the transition between preschool and kindergarten (which isn’t NEARLY as murky), but this is 100% different and 100% more confusing. There aren’t a huge number of resources where we live, and with a grand total of only THREE school psychologists (!) working for the school district we’ve relocated to, there aren’t too many people to go to for help with deciphering education laws. I can definitely see where we could potentially go without any services for Alex for months if we didn’t know how to advocate for him.
So, in typical nut-job/control-freak fashion, I have most recently been spending the hours of 10pm to 2am pouring over state and federal education government documents with way-too-tiny print and way too many references to things I don’t understand (hmm, wonder if this is why I’ve been having so many grad school flashbacks lately….). With every question I get answered, at least three new questions pop up, and I’m pretty sure I’ve somehow opened the same document from at least three different links on at least three different websites; however, I feel like I might finally be getting somewhere. Maybe.
In an attempt to organize my thoughts and hopefully make my insane amount of research beneficial to at least one person outside my immediate family, I thought I’d try to summarize and maybe narrow down some of the more useful information I’ve come across. I am not going to attempt to accurately reference each individual law or piece of legislation or whatever else because I am almost guaranteed to screw it up…please use the links provided if you want to know the specifics.
- The Department of Health (DOH) under the Early Intervention program (or Part C of the IDEA, or Individuals with Disabilities Education Act) provides services to children with disabilities, birth to 2. The State Education Department (SED) is required to provide services to preschool children with disabilities, ages 3 to 5 (Part B). (I’m pulling this info from the NYS Education website-http://www.p12.nysed.gov/specialed/publications/preschool/transitionguide/document.htm– but this is the same for all of the United States). Neither of these programs should be confused with other independent, private or community services, which don’t have the same age guidelines or restrictions but also aren’t provided by the state (i.e., these are the services that can cost a LOT of money).
- The biggest difference between the EI and preschool programs are the types of services available through each. The EI program is family-centered; i.e., the child’s family is supposed to lead the way in regards to goal-planning, and is required to be involved in the decision-making process as well as in the implementation of services. Therapy is often done right at home and can be utilized to work on any number of skills, whether or not they directly relate to education. For instance, one of the goals we came up with for Alex when we were putting together his IFSP (Individual Family Service Plan) was for him to get better quality sleep (what I wouldn’t give to have a whole team of people trying to improve MY quality of sleep). Goals and services can also target things like interactions with parents, getting dressed, playing appropriately with toys, or eating (to name a few).
- Preschool special education services, on the other hand, have to target goals related specifically to success in the educational environment. These goals are documented on an IEP (Individualized Education Program), which is the same document that will follow the child until they turn 21 or are no longer eligible for special education services (with revisions occurring at least once per year). To put it simply, preschool services are a lot more limited in what they can offer than Early Intervention services. If your child is able to “hold it together” in terms of behavior at preschool but falls apart the minute they get home, special education can’t touch those problem behaviors because they aren’t directly impacting educational performance.
- There also needs to be a big enough gap between your child’s current performance and that of their “typical” peers in order for them to qualify for special education services/an IEP. Whereas EI services can sometimes be given as preventative measures in the case where your child has a condition that is known to cause delays (e.g., autism), special education services at the preschool level and beyond can only be given after a significant delay already exists (and yes, in case you were wondering or are confused, this is totally counter-intuitive and oftentimes just plain sucks).
- There is a several-month-long transition period between EI services and preschool SPED services (the specifics in terms of dates and transition procedures vary from state to state). By referring Alex for Early Intervention services when he was already 2 years, 6 mos., and then moving him to another state at 2 years, 8 mos., we have managed to turn his transition into basically the most confusing situation ever. The document that’s been the most helpful (to me, at least) in explaining what the hell is going on and what our options might be is this one: http://www.parentcenterhub.org/wp-content/uploads/repo_items/legacy/partc/8-trainerguide.pdf It’s a training curriculum- about a bajillion pages long but fairly easy to understand- about Part C of the IDEA and it’s produced by the National Dissemination Center for Children with Disabilities.
- Depending on the state you’re in, there may be some overlap in terms of when a child is eligible for EI services and preschool SPED services (but they can’t receive both at the same time). Some states offer the option of keeping a child in EI services a little bit past their 3rd birthday (called a Part C extension), and you might also be able to start preschool services before your child’s 3rd birthday. The timelines depend on the date when your child is born, as well as specific start dates for preschool special education programs. There are about a million other ifs, ands, and buts in regards to these scenarios, and they all vary by state. Long story short? Do your homework.
- Regardless of your child’s age or the state you are in, there are a few things to pay attention to when you’re referring him or her for an evaluation. Most importantly, WRITE THINGS DOWN!!! Names of people you’ve spoken with, dates and methods of contact, even failed attempts at reaching someone in the school office. I can safely say from my own experience as a school psychologist that when a parent can readily reference when they’ve spoken with various people or signed documents, school staff will take note of this and work that much harder to stay on top of things with that parent’s child.
- The other thing that I would highly recommend doing is not only documenting the date that you signed consent for the evaluation (which sets the rest of the timeline in motion, including the eventual date when your child will begin receiving services if he or she qualifies for them), but also making sure that you get the opportunity to sign for consent as soon as possible. In the district where I worked in Wisconsin, there was a 15 business day timeline from the date of a referral for evaluation until the date that the consent form had to go out to the parents; however, in New York, there is no timeline (rather the consent form just needs to go out “immediately” after the referral is received). Don’t let the EI or school staff sit on this one. Now I’m not saying to become a huge pain in their ass…but if you do, I won’t judge.
- If you want to do your own research on IDEA, here’s the link to the IDEA information page on the U.S. Department of Education website (www.ed.gov): http://www.parentcenterhub.org/repository/idea/ You can find the exact text of the IDEA as well as summaries and way more resources in understanding it than you could possibly finish reading. And finally, if you want to find out how your own state interprets the IDEA and what additional laws you’ll need to be aware of, google your state’s education government page and use its search bar to look for special education.
As for us, I have not finished making phone calls and honestly do not know when services will be starting, or where, or if a new evaluation will be done right away (as opposed to using the one recently completed in WI), and whether Alex will be receiving EI services as opposed to preschool services. This whole process has been a lesson in learning to let go and go with the flow (HA!). Still, the more I read and understand the better I feel about being able to advocate for Alex and to make sure he gets all of the support he needs and deserves.
I would love to hear about other parents’ experiences with the referral process, or to talk to anyone thinking about starting this whole thing themselves! Has anyone found any other resources for helping understand what steps to take? This whole ordeal has been pretty overwhelming and I know having other people to bounce ideas off of can only help.