Complex Care Plan (Children with Special Health Care Needs)

Patient name: [Full legal name]
Preferred name: [Preferred name]
DOB: [MM/DD/YYYY] | MRN: [Medical record number]
Caregiver(s)/Guardian(s): [Names and relationship]
Preferred language: [Language] | Communication needs: [interpreter needed / AAC device / sign language / caregiver assists / none]
Plan status: [Active / Draft / Superseded]
Effective date: [Date] | Last reviewed: [Date] | Next scheduled review: [Date]
Plan owner: [Medical home, complex care program, or coordinating clinician]
Author/role: [Name, credentials, role]
Legal decision-maker: [Name and relationship / Unknown—verify]

Quick Reference / Emergency Snapshot

(This section must fit on one screen or printed page. Safety-critical fields must never be left blank—use "None known" or "Unknown—verify" as appropriate. For high-risk data, include source and date last verified.)

Primary diagnoses and key risks:

• [Diagnosis] — [Critical risk if applicable]

(List top 3–5 diagnoses most relevant to emergency care.)

Baseline status: [Typical mental status, interaction level, mobility, communication method, baseline oxygen requirement, feeding route, and typical vital sign ranges if relevant]

Technology dependence: [Known / None / Unknown—verify]

• [Device type and size/model] — [Critical settings if stable] (Source: [caregiver report / chart / specialist note]; Verified: [Date])

(If no devices, state "Technology dependence: None." Do not infer settings—if unknown, document "Settings unknown—obtain from device display or DME record.")

Allergies and adverse reactions: [Known / None known / Unknown—verify]

• [Allergen] — [Reaction type and severity]

Critical/rescue medications:

• [Medication] — [Dose, route] — [Indication and rescue instructions] (Source: [caregiver / chart / specialist]; Verified: [Date])

Emergency contacts: (Must not be blank.)

• Primary caregiver: [Name, relationship, phone numbers]
• Primary clinician/program: [Name/Team, phone, hours]
• Key subspecialist on-call: [Service, how to reach on-call]

Where to go / what to bring:

• Preferred ED/hospital: [Facility name(s)]
• Go-bag contents: [Device spares, medication list, chargers, battery backup]
• Medication list location: [Attached / pharmacy printout / home binder / portal]

Patient and Family Profile

Identity and communication: [Preferred name/pronouns; communication method; sensory considerations]

Family structure: [Household composition; primary caregivers; respite availability]

Cultural/language/care preferences: [Interpreter needs; cultural practices relevant to care]

In the family's words: "[Direct quote capturing primary concern or what the team should know]"

(If family goals have not been elicited, document: "Family goals not yet elicited—schedule goal-setting visit.")

Medical Summary

Diagnoses and problem list:

• [Condition] — [Confirmed / Presumed / Under evaluation]; Onset: [Since birth / Date]; Status: [Stable / Variable / Progressive]

(Prioritize by clinical importance.)

Narrative summary: [3–6 sentences describing overall trajectory, major systems involved, and reasons for medical complexity]

Baseline functional status: (Include only relevant domains; omit domains without active issues.)

• Neurologic/developmental/behavioral: [Baseline function and needs]
• Respiratory: [Baseline work of breathing, supports, saturation targets]
• Cardiac: [Key issues]
• GI/nutrition/swallowing: [Feeding route, tolerance, aspiration risk]
• Renal/urologic: [Key issues]
• Endocrine/metabolic: [Key issues]
• Hematology/oncology/immunology: [Key issues]
• Musculoskeletal/mobility: [Mobility aids, positioning needs]
• Skin/wounds: [Areas of concern]
• Pain/sleep: [Patterns and management]

Recent events:

• [Event type] — [Facility] — [Date] — [Outcome]

(Include hospitalizations, ED visits, major procedures, significant infections, or medication changes.)

Contraindications / avoid list:

• [Item to avoid] — [Rationale]

Current Management

Medications:

Medication	Dose	Route	Schedule	Indication	Administered by
[Name]	[Dose]	[Route]	[Schedule]	[Indication]	[Caregiver / Home nurse / School]

Weight for dosing: [kg] ([Date])

(For extensive medication lists, include critical medications here and reference attached full list. Ensure rescue medications also appear in Quick Reference with source attribution.)

Nutrition and feeding plan: [Route, formula/diet, rate/schedule, flush plan, aspiration precautions]

Respiratory care regimen: [Airway clearance schedule, inhaled medications, oxygen targets, suctioning routine]

Therapies and developmental supports: [PT/OT/SLP, early intervention, behavioral health, palliative care involvement]

Immunization status: [Up-to-date / Gaps noted] | [RSV prophylaxis status if relevant] | [Immunocompromise considerations]

Technology and Equipment

(Include a device-specific block for each device. Do not infer settings—if unknown, document "Settings unknown—obtain from device display or DME record.")

[Device Type]: [Indication]

• Key identifiers: [Size, type, model, manufacturer]
• Current settings: [Settings] (Source: [caregiver / chart / specialist]; Verified: [Date])
• Daily care tasks: [Routine maintenance]
• Supplies and DME vendor: [Vendor name and contact]
• Alarms and troubleshooting: [Established guidance only]
• Known complications/red flags: [Warning signs]
• Backup plan for failure/power loss: [Battery duration, manual backup, where to go]

(Repeat for each device as applicable.)

Contingency and disaster preparedness: [Power outage plan; supply continuity with days on hand and refill lead times; transportation needs; evacuation destinations]

Care Team

Role/Service	Clinician/Team	Clinic Contact	After-Hours/On-Call	Scope	Last / Next Visit
[Role]	[Name]	[Phone, fax, portal]	[On-call pathway]	[Responsibility]	[Dates]

Coordination lead: [Name/Role] — [Contact]

Emergency and Urgent Care Plans

When to seek urgent care or ED: [Symptom thresholds tailored to this child's baseline]

ED/EMS initial approach: [Airway/breathing/circulation priorities specific to this child; critical information to obtain immediately]

Condition-specific emergency instructions: (Include only established protocols with attribution.)

• [Emergency scenario]: [Protocol] (Per [Service] note dated [Date]; Owner: [Service])

What to avoid: [Contraindicated medications or procedures for this child]

Consultation expectations: [Which specialty to call first and under what circumstances]

Attachments: [Emergency information forms, specialty letters, rare disease protocols]

Goals and Action Plan

Patient goals: [Functional and quality-of-life goals appropriate to age/development] — [Date]

Family goals: [Goals such as reducing hospitalizations, improving sleep, securing school supports, respite] — [Date]

Clinical goals: [Goals from primary clinician and subspecialists] — [Dates]

Goal	Actions/Strategies	Accountable Person(s)	Target Date	Status
[Goal statement]	[Steps to achieve]	[Names/Roles]	[Date]	[Not started / In progress / Complete / Deferred]

Barriers and feasibility: [Resource constraints, nursing shortages, transportation, language barriers]

Acknowledgments: [Family/caregiver acknowledgment; lead clinician; care coordinator attestation]

(If goals are still being developed, document what was discussed and schedule goal-setting review.)

Care Coordination and Services

Home nursing: [Authorized vs. staffed hours; agency contact; training status]

Therapies: [Services, location, frequency, barriers]

School supports: [IEP/504 status; school nurse contact; medication administration at school]

Case management: [Insurance/payer case manager contacts]

Advance Care Planning

(Include when applicable. Do not infer—if not addressed, document "Not yet discussed.")

Decision-maker/guardianship status: [Name and relationship / Not yet discussed / Unknown—verify]

Goals-of-care discussions: [Summary] — [Date]

Resuscitation status / limitations: [Full code / DNR / DNI / Selective limitations / Not yet discussed] — [Date confirmed] (Source: [caregiver / POLST / chart])

Palliative care or hospice involvement: [Service and scope]

Key documents: [Location of POLST, DNR, guardianship paperwork]

Update Log

Date	Author/Role	Trigger	Summary of Changes	Next Review
[Date]	[Name/Role]	[Routine review / Hospitalization / ED visit / Device change / Medication change]	[Brief summary]	[Date]

(Update after hospitalizations, ED visits for major events, device or setting changes, significant medication changes, and at routine reviews at least every 6 months.)

Attachments

• [Emergency information form]
• [Rare disease protocols]
• [Specialty ED letters]
• [Device settings sheets]
• [Home nursing orders]
• [School medication authorization forms]
• [Legal documents location]