Care Coordination Post IEP

For most of your child's life, there's been a team. The IEP team, specifically — a recurring group of people who knew your child's needs, met on a schedule, made decisions together, and put a plan in writing that everyone was accountable to. It wasn't a perfect system. But it was a system, and it had a structure you could rely on, year after year.

Then school ends, and the team dissolves. The special education teacher who knew exactly how to redirect a hard moment, the school psychologist who tracked behavioral patterns over years, the occupational therapist who adjusted goals every semester — all of it ends, often within the same season your child exits the school system entirely. What replaces it is rarely as clear, rarely as structured, and almost never explained well in advance.

This is one of the most disorienting parts of the transition out of school-based services, and it deserves a clear, practical answer: who actually coordinates your adult child's care now, and how do you build that structure yourself if no one hands it to you?



1. Why the Coordination Gap Feels So Sudden

The IEP team's defining feature wasn't just expertise — it was structure. Meetings happened on a predictable schedule, mandated by law. Goals were written down, reviewed, and revised. Multiple professionals were required to communicate with each other and with you, because the IEP process legally compelled that coordination to happen.

Adult IDD services in Ohio don't operate under that same legal structure. Care coordination becomes the responsibility of a service and support administrator, often called an SSA, typically assigned through your county board of developmental disabilities — but the SSA's role, while valuable, doesn't automatically replicate everything an IEP team once provided. SSAs often manage caseloads covering over 50 individuals at once, and their coordination role tends to be less intensive and less frequent than what families experienced through the school system.

Medical care coordination shifts too. Pediatric specialists who managed your child's care for years often transition patients to adult providers around this same period, sometimes coinciding almost exactly with the loss of school-based therapies and supports. Families frequently find themselves searching for new adult-care physicians, therapists, and specialists at the same moment they're also navigating housing, day program, and employment transitions — an overwhelming convergence of change happening all at once.

Understanding that this gap is structural, not a sign that something has gone wrong specifically for your family, can ease some of the disorientation. The system genuinely doesn't hand off as smoothly as it should. Many families have navigated this same gap before you, and there are concrete steps that make it more manageable.



2. Who's Actually Available to Help — and How to Find Them

Your county board of developmental disabilities is the central hub for adult IDD services in Ohio, and your assigned SSA is the closest equivalent to a coordinating point person, even if their role looks different from what you're used to. If your child doesn't yet have an SSA assigned, or if you're not sure who that contact is, calling your county board directly to ask is the right first step — and the earlier this connection is made before your child exits school services, the smoother this transition tends to be.

Medical care coordination often falls to you directly, at least initially, but it doesn't have to stay entirely on your shoulders. Asking your child's current pediatric specialists for adult-provider referrals before the transition happens, rather than after, gives you a head start on building a new medical team with some continuity of information rather than starting from a blank slate.

Day programs and adult service providers, if your family chooses to use one, often have their own internal care coordination staff who can take on some of this role once your child is enrolled — tracking goals, communicating with other providers, and serving as a point of contact for day-to-day questions. This is worth asking about directly when evaluating potential providers, since the level of coordination support varies significantly between programs.

Parent and caregiver networks, while informal, often become an unexpectedly vital source of practical knowledge during this period — which adult specialists in your area are good with patients who have IDD, which providers have genuine wait times versus inflated ones, which paperwork processes have hidden steps nobody mentions upfront. Connecting with other families who've already navigated this transition can save real time and frustration.



3. Building Your Own Coordination Structure

In the absence of a formal team meeting on a predictable schedule, many families find it helpful to create their own version of that structure — even informally. This might mean keeping a single, organized document or binder with your child's current providers, recent evaluations, medication information, and care preferences, updated regularly so that any new provider can quickly get oriented. Using the many virtual organization tools available is worth exploring to find one that fits best for your adult child.  For medical care, using organizational Mychart accounts allows for ease of sharing between different medical systems and/or providers.

Setting a recurring personal check-in, even quarterly, to review how things are going across every domain — medical care, day program or work, housing, social connection — can replicate some of the function the IEP team once served, even without the formal legal structure behind it. Some families schedule this around an existing point of reference, like a birthday or the start of a new season, to make it easier to remember.

Don't hesitate to initiate communication between providers yourself when it doesn't happen automatically. To the extent possible, teach your child skills of self advocacy which can start by filling out medical forms before appointments, handling check in processes at physician offices to encouraging the medical providers to talk directly with your adult child.  If your child's new primary care physician and day program staff have no reason to know about each other, you may need to be the one who shares relevant updates between them, provide releases, at least until more formal communication channels develop, if they ever do.

Most importantly, give yourself grace during this period. Recreating an entire coordination structure that used to be legally mandated and professionally managed is genuinely difficult work, and doing it imperfectly while also managing everything else this transition involves is completely understandable. You don't have to build the perfect system immediately — you just have to build something workable, and improve it over time.



A System Worth Building Together

The loss of the IEP team is real, and it's one of the quieter griefs of this transition that doesn't get talked about enough. But the absence of formal structure doesn't mean the absence of support — it just means the support looks different, and often requires more active effort from families to assemble than it did before.

At Rising Heights, care coordination is something we're building intentionally into our model, not leaving families to recreate entirely on their own. We believe adults with IDD and their families deserve a community where housing, care, work, and connection are woven together with real coordination behind them — not scattered across disconnected systems families have to manage by themselves.

If you're navigating this transition, or thinking ahead to it, we'd like to be part of building that structure with you. Reach out at natalie@risingheights.org/440-364-2975, or join our interest list to stay connected as we build a model designed around genuine coordination, not just compliance.