TRANSITION RI Department of Health - PowerPoint Presentation

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TRANSITIONRI Department of Health The Health Equity InstituteOffice of Special Needs

Colleen PolselliDeborah Golding

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Our Work in Accomplishment of Title VEnsure Coordinated Special Needs Service Delivery SystemsIncrease & Enhance Medial Homes for Pediatric/Family PracticesStakeholder Integration for Title V Priorities Provide Technical Assistance at the State/National Level regarding Consumer E

ngagementPromote Person/Family Centered Advocacy and Leadership

Technical Assistance for Development and Implementation of Adolescent Health Care Transition

Policy

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Youth with special health care needs receive the services necessary to make successful transitions to all aspects of adult life, including adult health care, work, and independence.

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Definition/sHealth care transition can be defined as a purposeful, planned process that addresses the medical, psychosocial, educational, and

vocational needs of adolescents and young adults as they move into adulthood.

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Don’t Stop Thinking About Tomorrow: Transitioning your patients to adult health careSuzanne McLaughlin, MD FAAP FACPSharon Su, MD FAAPKatherine Richman, MDDepartments of Pediatrics and MedicinePediatric Grand Rounds April 20, 2012A Case Study

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AW is a 19-year-old female with lupus nephritis, diagnosed in 2003 (13 years old). Initial complications included pulmonary hypertension, cor pulmonale, and pericarditis. Subsequent complications included: gastritis/GERD, oligo menorrhea, herpes zoster, weight gain, cushingoid features, strep pneumoniae bacteremia. For six years, her medical condition was managed by several pediatric subspecialists – renal, rheumatology, cardiology, GI, endocrine. She was taking 7-8 different meds on a daily basis.

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1/12/10 AW has an appointment with a new Pediatric Nephrologist. (After first meeting with 19 year old patient, doc discussed transition of care with providers)1/18/10 Attended Rheum F/U visit4/17/10 Pediatric Lupus Clinic visit discussed transition of care with patient, referred patient to adult PCP- Dr. Sue McLaughlin, F/U in Pediatric Lupus Clinic in 3 months5/5/10 AW

attended the Transition Clinic, new adult PCP established! 6/4/10 PCP sick visit for abdominal pain6/10/10 PCP F/U for sick visit

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6/22/10 Sick visit for abdominal pain -Pedi Renal Clinic F/U, referred to Pedi GI for peptic ulcer disease6/24/10 Pedi GI visit-scheduled a EGD (esophagogastroduodenoscopy)6/25/10 EGD, normal, diagnosed with GERD8/26/10 Pedi Lupus Clinic Visit-patient not ready to transition to adult sub-specialty care, F/U 3 months10/26/10 Adult PCP Sick visit chest pain, shortness of breathLOST TO ANY FOLLOW UP FOR 6 MONTHS

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4/27/11 PCP Sick visit for concern ofPREGNANCY!5/4/11 Pedi Lupus Clinic F/U visit- She’s Pregnant?!, IMMEDIATE transition of care to Adult Renal & Rheum, Adult PCP notified to help with transition, Pedi Rheum & Renal personally contacted Adult Rheum & Renal, patient instructed she MUST follow up with PCP!

May-July 2011 Several conversations with Adult Renal and Adult Rheum regarding patient’s medical history and care, provided medical records

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May-June 2011 Pedi-nephrologist contacts adult nephrologists to discuss transition of care06/21/11 Transition Clinic-Missed Appointment06/25/11 Transition Clinic-Missed Appointment10/10/11 Hospitalized at RIH01/06/12 First appointment w/adult nephrologist01/18/12 Renal biopsy, ADULT dx: lupus nephritis

03/25/12 First dose of Cyclophosphamide Note: AW was

told “you can’t get pregnant”

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Goals for the PresentationRecognize Issues of TransitionIntroduce Policies for PracticesStrategies for Care CoordinatorsHow to Prepare Families and YouthKnow Resources AvailableBest Practice

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Recognize Issues of Transition Entitlement vs. EligibilityYouth (and Family) ReadinessPreparing for Age of Consent / Majority

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Entitlement vs. Eligibility (Access)Services and supports for children receive from birth to 21 will end when they exit school.- Individuals with Disability Education Act (IDEA) Services and supports in the adult system require eligibility determination. Lengthy waits! -Rehabilitation Act/Section 504 & Americans with Disabilities Act (ADA)

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Preparing for Age of Consent / Majority Age of MajorityHIPPAFERPAGuardianship / Alternatives to Guardianship

www.theriotrocks.org

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Youth (and Family) Transition Readiness “As I got older, when I heard my parents worried about my health, it was a wake up call…this is actually my thing"- Amanda (age 17)

“One of the hardest lessons I have learned as a parent is to know where I end, and

where

Holly

begins”

-Eileen Florenza (parent)

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Policies for PracticesTransition ConceptsPortable Medical Summary / Emergency Care PlanPractice Transition Policy

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Policies for Practices- Transition ConceptsPre-Transition- Envision the future! What will life be like? What will he/she accomplish? What needs to happen to accomplish? Strengths, limitations and interests- start no later than age 10.Transition

- Age of responsibility -Young people need to be at the center & involved to become informed decision makers- systems of entitlement-start by age 14 thru 18Transfer-

Taking action moving from a pediatric to an adult health care settings & adult systems of eligibility

–

between age 18-21

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Medical Summary & Emergency Care PlanSnapshot of Current ConditionInsurance InformationCommunication Health GoalsMedicationsICE

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Policies for Practice-Posted PolicyDevelop a transition policy/statement that describes the practice's approach to transition, including privacy and consent information.Educate all staff about the practice's approach to transition, the policy/statement, and distinct roles of the youth, family, and pediatric and adult health care team in the transition process, taking into account cultural preferences.

Post policy and share/discuss with youth and families, beginning at age no later than age 12-14, and regularly review as part of ongoing care.

http

://

gottransition.org/providers/leaving.cfm

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Strategies for Care Coordination Prepare FamiliesEmployment FirstWorkshops and conferencesPrepare YouthPositive Youth DevelopmentTools and ResourcesKnow ResourcesMedical Home Portal

NCQA-Continuity of Team Based Care

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Prepare FamiliesEmployment FirstBHDDH / DD /ORSCommunity Service / InternshipsTransition Programs and Regional Transition CentersWorkshopsConferences

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Prepare Youth Positive Youth DevelopmentMaterials and Resources

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Know Resources

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Adult PCP-Best Practice for Care CoordinationIdentify and Interview Adult PCP’sConfirm date of first adult PCP appointmentComplete a transfer package:Final readiness assessmentPlan of CareTransition goals

Medical Summary (a current snapshot)Emergency care plan

Legal documents

Condition fact sheet

Any additional records

Prepare letter to adult PCP, send package, and confirm receipt

Confirm with the adult PCP the pediatric PCP responsibility for care pending transfer

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Transition CompletionContact young adult and their parent/caregiver 3 to 6 months after transferCommunicate with adult PCP to offer assistanceBuild on-going collaborative partnerships with adult PCP & specialty practices

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Thank youColleen Polselli: colleen.polselli@health.ri.gov, 401-222-4615Deborah Golding deb.golding@health.ri.gov, 401-222-5954