#178: Live! Transitions of Care: From Cribsiders to Curbsiders

May 20, 2026 | By Sam Masur

Audio

How long are you planning to see your medically complex teen? 18, 26, 35, or even 60? Recorded live at the 2026 AMPP (Association of Med-Peds Physicians) National Conference, the team sits down with Dr. Megumi “Megi” Okumura (UCSF) to discuss Transitions of Care from pediatric to adult providers. Dr. Okumura unpacks the difference between transition and transfer, navigates the practical landmines around insurance and legal decision-making, and reminds us that the only wrong thing is to do nothing. Bring your bamboo — we’re bending, not breaking.

Transitions of Care Pearls

1. Transition ≠ transfer. Transition is a lifelong developmental process of building self-management skills; transfer is the discrete event of changing providers. 
2. The only wrong move is to do nothing. An imperfect policy (“we see patients until 18 and then refer”) beats no plan at all. Even just naming it out loud at a well-child visit creates a conduit for the family.
3. Use a published framework. Got Transition’s Six Core Elements 3.0, endorsed by the AAP/AAFP/ACP 2018 Clinical Report, is widely adopted and customizable. The TRAQ is a validated transition-readiness self-assessment for use in clinic.
4. Send a transition summary. Treat it like a hospital discharge summary.
5. Insurance has hard cliffs. The biggest gap is Medicaid redetermination at age 19. Private insurance dependent coverage extends to 26, and can continue past 26 with documented disability — but the form must be filed before age 26.
6. Bridge with primary care. If a patient loses their pediatric subspecialist mid-transition, the primary care provider can refill maintenance medications while a referral to adult subspecialty is in motion.
7. Quality of life is arguably the most meaningful outcome. Can the patient pursue what they want — school, friends, work, video games — despite their condition? That matters more than any disease-specific metric.

Transitions of Care Notes 

Transition vs. Transfer

Transition is a longitudinal, developmental process that prepares an adolescent or young adult — and their family — to participate in adult-style care. Transitioning is a lifelong process; it doesn’t end at the transfer. It includes building self-management skills, understanding diagnoses, navigating appointments and refills, and learning to advocate within a healthcare system. Transfer is the single moment of moving from a pediatric provider to an adult provider. Some patients (e.g., a med-peds patient followed by a dual-boarded subspecialist) may never need to transfer at all — but they still need to transition.

The AAP/AAFP/ACP 2018 Clinical Report (Pediatrics, 2018) recommends transition planning begin by age 12–14. For patients with chronic conditions, Dr. Okumura recommends starting even earlier. She started discussing transition for patients with cystic fibrosis starting at age 8 with handouts for the family. Families of medically complex kids often haven’t been allowed to imagine their child’s adulthood. Naming the future early gives them permission to plan for it.

Frameworks and Tools for Transition

Got Transition’s Six Core Elements of Health Care Transition 3.0 is the most widely adopted framework and is the approach endorsed by the AAP/AAFP/ACP. It includes packages tailored for pediatric, family medicine, med-peds, and internal medicine practices. The American College of Physicians also offers a transition resource page with templates and tools.

The Six Core Elements are:

• Develop, discuss, and share a transition policy/guide
• Track and monitor youth on a flow sheet/registry
• Assess transition readiness
• Plan for transfer to adult care
• Complete the transfer of care
• Confirm integration into adult care

For readiness assessment, the Transition Readiness Assessment Questionnaire (TRAQ) (Wood et al., Academic Pediatrics, 2014) is a validated, self-administered questionnaire for ages 14–21 that takes 3–5 minutes. It assesses four domains: managing medications, appointment keeping, tracking health issues, and talking with providers. Dr. Okumura notes that not every clinic uses the TRAQ specifically; many subspecialties have their own equivalent checklists. The point is to use something structured.

Integration into Adult Care

Communicate with the adult provider to help identify which adult subspecialists are needed, and manage the integration into the adult system. The adult provider can match patients to adult subspecialists in their medical system, not only by clinical fit but by personality and practice style. This includes services that are routed differently in adult systems (e.g., Dr. Okumura gives the example at UCSF, G-tube care is managed by primary care/adult nutrition rather than adult GI; a misdirected referral to GI gets rejected and frustrates the family). Dr. Okumura recommends being flexible: “Be the bamboo. Bend, don’t break.”

A transition summary — analogous to a hospital discharge summary — is critical. Without it, the receiving adult provider is set up for failure, and the family is set up to feel abandoned. At minimum, the summary should communicate the patient’s functional status, baseline cognition and communication, what was discussed with the family, and outstanding subspecialty needs.

Pediatric vs. Adult Healthcare Models

The two systems differ fundamentally:

• Pediatrics is family-centered and growth-oriented. The frame is helping the child self-actualize and live fully in their community. Family is included by default — including in the inpatient room, where child life is built into the system.
• Adult medicine is patient-centered and disease-focused. The typical adult medicine patient is in their 40s or 50s; young adults with childhood-onset chronic disease are an outlier population. Family involvement is not the default, and child-life-equivalent supports rarely exist.

Barriers to Successful Transition

Patient-Level Barriers

Geography (especially rural patients), insurance, transportation, language, health literacy, and self-advocacy skills are all barriers that patients face daily.

Provider-Level Barriers

Counterintuitively, the medicine itself is often not the limiting factor — general internists handle unfamiliar conditions all the time. The bigger barriers are time, social-work and case-management support. Practices that include DME coordinators, pharmacy techs, and home health coordinators can manage complex patients far more easily — but many private practices lack these supports.

System-Level Barriers

Pediatric and adult systems are siloed in ways that make both navigation and communication hard. Freestanding children’s hospitals — particularly in rural areas — face an even bigger challenge finding adult partners. 

Social Determinants of Health

The system runs on an “ask” model — services are not offered as a menu. Families who don’t know what to ask for don’t get what they need. Dr. Okumura wants patients to know what services are available to them. This includes Medicaid rights, regional center services, what equipment is and isn’t covered, and connecting them to Family Voices affiliates for parent-to-parent advocacy. 

Expert Opinion: Pediatricians can help by handing families a roadmap early — ideally around age 12 — that lays out the upcoming hard stops by state (SSI, IEP, Medicaid redetermination, Department of Rehab eligibility).

Insurance and Legal Considerations

Medicaid and Private Insurance

• Age 19 — Medicaid redetermination. This is the single biggest insurance gap. State-by-state variability is enormous; some states have case managers, others do not. Every state has a Title V program; Dr. Okumura recommends learning what is available locally well before the patient turns 19.
• Up to age 26 — Private insurance dependent coverage. Patients can stay on a parent’s private plan until 26 under the ACA. For dependents with disability, a form must be filed (typically before age 26) to continue dependent coverage past 26 based on medical determination.

Legal Decision-Making at Age 18

Parental access to the medical record begins to step down well before age 18. In many EMRs, parents lose default access to their child’s chart at age 12 or 14 due to adolescent confidentiality protections; at 18, the patient is a legal adult and parental access ends entirely unless the patient signs a release. Patient portal access is turned off automatically — often abruptly and without warning. The parent typically discovers this when they try to log in and can’t. Pediatricians should counsel families ahead of these milestones, explain that the now-adult patient must sign release forms if they want their parent to remain involved, and have those conversations with the patient alone in the room.

For patients without capacity to make medical decisions, options include:

• Conservatorship / Guardianship: Court-based, legally robust, but expensive — often thousands of dollars. Pro bono legal help is sometimes available through local family advocacy organizations.
• Supported decision-making: Patients with some self-advocacy capacity can specify which domains (medical, financial) they need help with, designate supporters, and have the agreement entered into the medical record — without going to court. See the AAP policy statement on alternative decision-making for a clinical overview.

Bridging Gaps: Refills, Acute Issues, and Lost-to-Follow-Up

Patients fall through the cracks — sometimes because they aged out, sometimes because a subspecialist left, sometimes because life got in the way. Megi’s practical guidance:

• Just refill it. If a patient lost their pediatric subspecialist mid-transition and is on a critical medication (insulin, methotrexate, anti-epileptics), the primary care provider should refill it while a referral to adult subspecialty is in motion. Don’t leave them without.
• Build a buddy on the adult side. Person-to-person relationships across the peds/adult divide are how things actually move. One adult colleague you can curbside is invaluable for navigating the adult system.
• Lost-to-follow-up patients are not “bad patients.” Brain development continues until ~26. When a young adult resurfaces, meet them where they are, work in partnership, and use telehealth, after-hours labs, and other low-friction options to re-engage them.

Ancillary Services and DME

PT, OT, speech, wheelchair clinics, and DME programs are highly variable across systems. Pediatricians should know what equivalent adult services exist locally before transferring. Dr. Megumi gives a California based example: California Children’s Services (CCS) — the state’s Title V program — often front-loads DME orders to last seven years before age-out at 21.

Defining a Successful Transition

There is no single agreed-upon outcome measure — this is an active area of research within the Healthcare Transition Research Consortium. Candidates include:

• Disease-specific outcomes (e.g., hemoglobin A1c) — useful but narrow
• Mortality — Dr. Okumura argues this is a terrible outcome to optimize toward, as the bar is super low
• Quality of life — can the patient pursue what matters to them despite their condition?

Dr. Okumura’s expert opinion: Healthcare is less than 5% of most patients’ active lives. Success means the condition isn’t interfering with the patient’s ability to be a whole person — to play video games, see friends, hold a job, go to the movies. Align with what the patient wants out of their life, not just their disease.

What About Otherwise Healthy Adolescents?

Transition isn’t only for the medically complex. The skills that matter for any adult consumer of healthcare apply universally:

• Why you go to the doctor (every 2–3 years for health maintenance, not only when sick)
• How to recognize when something is wrong and reach out promptly
• How to advocate for yourself in a healthcare system

For combined internal medicine-pediatrics and family medicine providers who keep their patients across the age divide, this work still matters — the “transition” is in autonomy and self-advocacy, not in changing providers. Dr. Okumura praises the youth (rather than the parent) when an 18-year-old messages her directly. 

Time, Billing, and Making It Sustainable

These visits are long, and RVU-based productivity systems can punish providers who spend the time. Dr. Okumura’s billing approach:

• Bill by time. Level-5 E/M codes plus G codes (prolonged services) for visits with developmental disabilities or multiple subspecialties.
• Book longer slots when billing by time. Dr. Okumura uses 40min slots by default for any patient with developmental disability or multi-specialty needs.
• Bill chart-review time too for new patients — pre-visit chart review is real work and can be captured under time-based billing.
• See complex patients more often. Every 3 months in the first year of integration helps prevent “oh-no-the-pump-broke” surprises and keeps DME and prescribing on track.

For coding details, the Got Transition / AAP 2025 Coding and Payment Tip Sheet lays out transition-specific E/M and care management codes.

Take Home

There is no single right way to do transition. Resources, frameworks, and local supports vary — what matters is that you do something. Even a policy as simple as “I see patients until 18 and then refer” is better than silence, because the conversation itself is a conduit for the family. Patients won’t bring it up; it has to come from us

Links

• Got Transition 
• Healthcare Transition Research Consortium (HCTRC)
• Family Voices — national family-led network with state affiliates; family-to-family support, advocacy training, and resources for transition.
• MovingtoAdultHealthCare.org — Center for Transition to Adult Health Care for Youth with Disabilities; resources specifically for IDD populations.

Goal

Listeners will describe the framework, key stakeholders, legal and insurance milestones, and practical strategies for transitioning adolescent and young adult patients from pediatric to adult medical care.

Learning Objectives

After listening to this episode listeners will…  

1. Distinguish between transition (a developmental process) and transfer (a discrete event), and identify when each should begin.
2. Describe the Six Core Elements of Health Care Transition 3.0 and recognize at least one validated transition-readiness assessment tool.
3. Recognize the major insurance milestones (Medicaid redetermination at 19, dependent coverage to 26 with disability extensions) that affect young adults.
4. Counsel families on legal decision-making options at age 18, including supported decision-making and conservatorship/guardianship.
5. Describe practical strategies for the primary care provider to bridge subspecialty care gaps during the transition window.
6. Apply quality-of-life and patient-goal-oriented metrics — alongside disease metrics — to define successful transition.
7. Recognize the importance of interprofessional and team-based care (primary care, subspecialty, social work, DME, family advocacy organizations) in supporting transition.

Disclosures

Dr Okumura reports no relevant financial disclosures. The Cribsiders report no relevant financial disclosures. 

Citation

Masur S, Okumura M, Chiu C.  “#178: Live! Transitions of Care: From Cribsiders to Curbsiders”. The Cribsiders Podcast. https:/www.thecribsiders.com/ May 20, 2026.