Complex care coordination

Care coordinators and case managers

Several different roles do some version of this work, and they aren’t mutually exclusive:

• TennCare managed care plan — ask your plan. Members enrolled in CHOICES or ECF CHOICES can typically reach a Care Coordinator or Support Coordinator through their health plan (Wellpoint/BlueCare or UnitedHealthcare Community Plan); members on a 1915(c) waiver may instead have an Independent Support Coordinator. Contact details are below.
• A complex-care clinic. Some clinics — including Vanderbilt’s Complex Care Program for children with serious, technology-dependent conditions — build coordination directly into the clinic itself, working with home health and equipment companies and following up between visits.
• DDA or ECF CHOICES support coordination, for adults. Adults enrolled in ECF CHOICES have an assigned Support Coordinator who helps access services, checks in at least annually, and can be changed if it isn’t a good fit.

None of these roles replace a family’s own coordination entirely — but they can take a real amount of the work off your plate, and they’re worth asking about directly rather than assuming you don’t qualify.

Building a one-page emergency summary

A one-page emergency summary is a single sheet that lets a provider who has never met the person — an ER doctor, a substitute nurse, an unfamiliar paramedic — understand the essentials in under a minute. Useful contents include:

• Diagnoses, current medications, and allergies
• Equipment in regular use (feeding tube, ventilator, wheelchair) and anything unusual about it
• What’s “normal” for this person versus what would signal an emergency — baseline behavior, breathing, or functioning that a stranger wouldn’t otherwise know
• Current providers and emergency contacts

Keep a copy with the equipment bag, in the car, and with the school or day program, and review it with the person’s primary care provider so the details are accurate, not just familiar.

Communication passports

A communication passport is different from a medical summary — it introduces how a person communicates and what helps them, especially useful when someone is nonspeaking, uses AAC, or communicates in a way that isn’t obvious to someone meeting them for the first time. It commonly includes:

• How the person communicates — speech, AAC, sign, gesture, or behavior — and how to give them time and space to use it
• How to ask yes/no questions in a way that works for them
• Likes, dislikes, and what typically causes distress
• Sensory needs and what helps someone stay regulated
• How the person shows pain or discomfort, if that isn’t obvious to a stranger

Where a communication passport focuses on how someone communicates and what helps, the emergency summary above focuses on medical facts — most families end up keeping both.

Keeping a binder or digital folder

Whatever the format — a physical binder, a folder on a shared phone, or both — keeping these pieces in one place saves real time at the moments they’re needed most:

• The emergency summary and communication passport
• A current equipment list, including serial numbers
• Insurance cards and policy numbers
• Recent evaluations and the current IEP or person-centered support plan
• Current medication list
• A provider contact list

Update it after any real change — a new diagnosis, a new medication, a new piece of equipment — rather than trying to remember everything at once during a crisis.

Handoffs

Records don’t always transfer automatically, even between departments of the same hospital system. At any handoff — a hospital admission, a new school year, a new therapist, a move to an adult program — it helps to:

• Bring the emergency summary and communication passport, and ask the new provider or teacher to actually review them in the first meeting rather than assuming the file made it over.
• For a hospital admission, ask whether the complex-care team or care coordinator can be looped in directly, rather than starting from zero with the admitting team.
• For a new school year, confirm the IEP or health plan at school reflects current equipment, medications, and emergency procedures — not last year’s.

When pediatric-to-adult transition changes the team

Pediatric complex-care coordination does not automatically continue into adulthood. Healthcare providers, insurance structures, and support-coordination systems all shift somewhere around 18–22, and the adult usually needs a new care team built deliberately rather than inherited. Adult Healthcare, Therapy, and AAC covers finding adult-focused providers in more depth. An adult still deserves — and can ask for — an up-to-date emergency summary and communication passport of their own, written to reflect their own voice and preferences as much as possible, alongside DDA or ECF CHOICES support coordination if they qualify.

• What exactly do you do for us, and what falls outside your role?
• How do we reach you, and how quickly should we expect a response?
• Can you help us request records or authorizations from more than one provider at once?
• Who is our backup contact if you’re unavailable?
• Can you help us build or update our emergency summary?
• How often will we meet or check in?
• What happens to our coordination team during a hospital stay?
• Who coordinates care once we age out of pediatric services?