Wed, November 8, 2023

Life after Early Intervention: An FAQ for Parents of Special Needs Toddlers

My special needs parenting story started fairly casually: my toddler missed some developmental milestones and I called Early Intervention (EI). If I thought about the future at all, I figured we would get some therapies going, she would catch up, and we would all go back to life as we knew it.

But, as my daughter got closer to the age of 3 and the end of the Early Intervention program, it turned out we weren’t done. My EI service coordinator kept talking about preschool therapies, mentioning a new acronym—something called CPSE—with increasing urgency.

The thought of navigating a whole new system left me paralyzed. I couldn’t tell what help my daughter was going to need in preschool, and part of me didn’t even want to find out. My friends, relatives, and therapists all had strong opinions, which they did not hesitate to share. Meanwhile, I just wanted to crawl under the covers and go to sleep. However, I knew I couldn’t hide for long. And when I forced myself to start researching next steps, things got easier, bit by bit. I learned my options and gradually made a plan. As the people in my life saw me gaining confidence in my decisions, they stopped bombarding me with advice.

So yes, facing life after EI can feel overwhelming. But I promise that the more you know, the less scared you will be. Knowledge is power, and the antidote to anxiety is action.

Q: What is CPSE? How is it different from EI?

A: The biggest difference between Early Intervention and what lies beyond is the focus on education. EI, which goes from birth to 3, is a developmental model, concentrating on the home and community. The Committee on Preschool Special Education (CPSE), which takes over after EI, is all about how your child does in the classroom.

This means you need to shift your frame of reference. From here on in, school functioning is the benchmark for services. If CPSE offers your child a therapy, it’s because they’ve determined your child has a corresponding delay that would impede their making “appropriate classroom progress.”

Q: What services are available in CPSE? What are not?

A: Just as in EI, kids can receive the related services of speech therapy, physical therapy (PT) for gross motor delays, and occupational therapy (OT) to help with fine motor and sensory integration skills. Counseling, which is play therapy to help children work out their emotions, is also available.

Applied Behavioral Analysis (ABA), a therapy most often given to kids on the autism spectrum, is no longer available 1:1 through CPSE. Some preschool teachers do use behavioral management techniques, but after EI ends, most parents turn to their health insurance to keep home ABA going. (If you think your child may need a 1:1 ABA preschool program, talk to an independent evaluator.)

Your child may do just fine with only related services, and be able to attend a mainstream preschool program with no additional support. But some preschoolers do need extra help in the classroom. For them, CPSE will offer a Special Education Itinerant Teacher (SEIT), a part-time shadow teacher who joins your child at preschool for a few hours a week.

If a child needs full-time special education support every day, CPSE will provide a center-based environment. That is the entire preschool package, classroom and therapies, under one roof. Classrooms come in a range of forms and sizes, from self-contained groups of six children to integrated classes of up to 18 kids.

No matter what CPSE provides, you can always supplement on your own with private therapies. CPSE owes your child services based on your child’s delays, and the special education system’s obligation is the same no matter how much outside support you offer.

Q: How does the CPSE process get started?

A: At around 2.5 years old, your child is eligible to receive the “CPSE packet,” a voucher for a set of evaluations and a list of official CPSE evaluation sites. You call a site and schedule your child’s evaluations. Do some word-of-mouth research among other parents to help you choose one.

Q: How does the CPSE process happen? Do I need to do anything, or is it automatic?

A: If you sign transition paperwork during EI, it happens automatically. Check your files: you may have already signed! It’s also possible that your EI service coordinator tried to bring up the topic, and you weren’t ready to deal with it and declined (or said “not yet”). Either way, reach out to your EI service coordinator to ask where you are in the process and determine your timeline.

Timing matters. EI can be extended well past your child’s third birthday, but only if you agree to the CPSE transition process. If you decline, EI will end abruptly the day your child turns 3. After that, if you want therapies again, you’ll have to start from scratch to get CPSE going, which can take months. I’m a big believer in preserving your options, so I recommend agreeing to the CPSE transition process even if you are not sure you will end up wanting to pursue services.

If your child has a fall birthday, do the evaluation as early as possible. That way, you have the option to go into CPSE at the start of the school year in September rather than extending EI. It may seem unfair, because your child won’t yet be 3, and kids with earlier birthdays get more time in EI. But schedules and spots fill up fast and are often booked solid by mid-year. Starting young in September could be better than scrambling madly in January.

Q: What happens in a CPSE evaluation?

A: The two standard pieces are a social history, where you tell your child’s story to the case worker at the evaluation site, and a psychological evaluation of their cognitive skills.
Beyond that, your child should be evaluated in every area they receive EI therapies. If they were recently approved for a new service, the site may want to use that EI report in place of new testing.

When you talk to all these evaluators, be sure to stress your child’s delays. This is not the time to brag about all their progress! I know it feels weird to emphasize the negative, because parents are supposed to be cheerleaders, and talking about your child so brutally and clinically may feel like a betrayal. But if you don’t spotlight your child’s challenges, the system will focus on their strengths, and you may not be able to get them the help they need.

Q: My child never got a certain service [such as physical therapy, speech therapy, OT, etc.] in EI, but I think he needs it. Can I ask for it in CPSE?

A: This is a great opportunity to assess any areas where you have concerns. When you make your initial call to the site, mention all your worries to the intake coordinator and cite plenty of concrete reasons. It’s a lot easier to ask at the start than to try adding evaluations once the process is already underway.

Q: What if I don’t want to use a CPSE site for the evaluation? Can’t I just get my child evaluated privately?

A: You definitely can! But what you can’t do is avoid the CPSE evaluations entirely. You need them to get CPSE services, so anything you do on your own is supplemental, not a replacement.
Many parents go through insurance or pay out of pocket to have their kids evaluated by developmental pediatricians, psychologists, neurologists, or outside therapists. Especially if the results of CPSE evaluations don’t show a slam-dunk case for services, those independent reports can provide really helpful supporting documentation.

Q: Where does the CPSE evaluation happen?

A: Whether it’s in your home or the evaluation site’s office, or remotely, your child will be tested in a calm, quiet place by a friendly adult working hard to engage them. But in this type of setting, the evaluators will probably see the best possible version of your child; if your child struggles more in a group, the reports may not tell the full story.

Talk to the evaluation site about setting up an educational observation. If your child isn’t currently in school, a toddler art, music, or gym class, or even the playground, can work. That observation can help you and your team figure out what kind of preschool setting is the right one.

Q: Okay, what preschool setting is the right one? And how will I know? Everyone on my EI team and in my life has a different opinion about this! How do I cut through the noise?

A: I get it! Here are some ways to begin to figure this out.

Don’t go by how your child does in individual therapy sessions. Instead, consider what they are like among peers. A preschooler’s job is not really about academics; it’s to learn how to learn in a group. They need to be able to take turns, follow directions, transition smoothly, share ideas, stay emotionally regulated, and effectively use language and play skills, all among other kids who have their own agendas.

Think about how much special education support your child will need to master those skills. Is it none, some, or a lot?

Put your child in as many group situations as possible, observe them in action, and ask the group leader for honest feedback. How is my child at following directions? Does she use her language to express needs and share thoughts? Can he stop doing a favorite activity when it’s time to move on? Does he get upset more easily than his peers?

As you look into mainstream preschools, ask whether they take children who have SEITs. The way a school responds to this question, even the tone of voice of the person answering it, will tell you a lot. The right preschool will be ready to work with your child on her worst day, not just her best.

CPSE is going to offer the fewest possible SEIT hours, so think about the rest of the school day. When the SEIT’s not there, will your child be in the mix, communicating and interacting with classmates, or will they be out on the edges of the group?

Lastly, there is nothing magical about the mainstream. If your child isn’t ready for it right now, it’s not going anywhere. Parents often worry that putting a child in a specialized preschool will “trap” them in special education forever, but it’s the other way around. The more help you give your child now, the more progress they can make, and the more options they’ll have later.

Q: What happens after the CPSE evaluations are done?

A: Your case worker at the evaluation site will send the completed reports to you and to your CPSE administrator, who is assigned to you based on your school district and your child’s last name. The administrator will reach out to set up a meeting, in which a plan for your child will be discussed.

While you wait for the admin to set a meeting date, have a conversation with your case worker about expectations and reality. What are you hoping for at the meeting, and what services should you expect CPSE to offer? If those two things are far apart, what can you do before the meeting to improve your situation?

Q: Who comes to this meeting?

A: You, the CPSE administrator, your EI service coordinator (who is mainly there to sign paperwork), the evaluation site case worker, and anyone you want for backup, such as an EI therapist. If you do enlist reinforcement, bring someone who not only knows your child well, but is also well-spoken and can help you advocate.

Q: What happens at the meeting?

A: If your child qualifies for CPSE services, the CPSE admin will extend EI, recommend educational support and/or related services, and create an Individualized Educational Program (IEP) with appropriate goals. The IEP process is governed by federal special education law, and all of this must happen with your active input, called “meaningful participation.”

What that means is that parents are a critical part of the team. If you have objections, voice them! Cite evidence to back up your arguments. If the IEP isn’t sufficient, politely but firmly advocate for what you want, and keep coming back with yet one more story or example. Visualize the meeting as a tennis match. You need to hit the ball over the net again and again.

If there’s a catastrophic difference of opinion, you don’t have to agree to a program you believe is inappropriate for your child. Ask to end the meeting, then go talk to experts about your options.

Q: How do I get ready for the CPSE meeting? I’m already hyperventilating.

A: Don’t panic; organize!
Gather up your CPSE evaluations and any independent reports. Ask your current therapists to write letters of support for the services you want, and ask for those letters to be as specific and concrete as possible.

Read through all the evaluations again, no matter how painful it is. (I used to hide them under the couch cushions, so I could pretend they didn’t exist.) As you review them, think of examples and anecdotes that help illustrate the data. One of the most valuable things you can do at this meeting is tell stories that bring your child to life.

Put all your documentation into a big fat binder, stick a cute photo of your child on the front, make notes to remind you of your best stories, and get ready to sing for your supper. You will be doing most of the talking.

Q: How do I stay sane during all this?

A: Make sure to take care of yourself. This is an emotionally draining process, and especially if you’re surrounded by families of typical kids, it can be lonely and isolating. Going to the playground caused me painful stabs of envy even on my best days, but if the subject turned to everyone’s preschool search, it was hard just to talk. I tried to avoid those conversations, because as soon as the topic came up, I started crying.

My assignment for you is to find your people, because only other special needs parents really get it. Join a support group, post on message boards, chat up people at the sensory gym. Just one buddy is enough. Having a companion for the journey, someone who already knows what the acronyms stand for, can make all the difference.

Q: Any last words of encouragement?

A: Just as you figured out EI, you will master this system too. If you don’t get the services you want, it’s not over; you can try again in a later meeting. I am not a fighter by nature, but I learned to fight. I have total faith that you can do this.

But if you do have moments when you’re in doubt, remember that all this effort will pay off hugely in the future. Remember that you’re doing an amazing job at a very difficult task. Remember that your child is lucky to have you. And then make sure to have some chocolate.

Sarah Birnbaum is a special education advisor and parent advocate in New York City. Learn more at nyspecialneeds.com

This article first appeared in the 2023 issue of the Parents League Review. Get the current issue of the Review free with a family membership. Or purchase it separately.