Transcript Transition Presentation bu the RI Department of Health

TRANSITION
RI Department of Health
The Health Equity Institute
Office of Special Needs
Colleen Polselli
Deborah Golding
Our Work in Accomplishment of Title V
Ensure Coordinated Special Needs Service Delivery Systems
Increase & Enhance Medial Homes for Pediatric/Family Practices
Stakeholder Integration for Title V Priorities
Provide Technical Assistance at the State/National Level regarding
Consumer Engagement
• Promote Person/Family Centered Advocacy and Leadership
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• Technical Assistance for Development and
Implementation of Adolescent Health Care Transition
Policy
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.
Definition/s
Health 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.
A Case Study
Don’t Stop Thinking About Tomorrow: Transitioning your
patients to adult health care
Suzanne McLaughlin, MD FAAP FACP
Sharon Su, MD FAAP
Katherine Richman, MD
Departments of Pediatrics and Medicine
Pediatric Grand Rounds April 20, 2012
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.
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 visit
4/17/10 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 months
5/5/10 AW attended the Transition Clinic, new adult PCP established!
6/4/10 PCP sick visit for abdominal pain
6/10/10 PCP F/U for sick visit
6/22/10 Sick visit for abdominal pain -Pedi Renal Clinic F/U, referred to
Pedi GI for peptic ulcer disease
6/24/10 Pedi GI visit-scheduled a EGD (esophagogastroduodenoscopy)
6/25/10 EGD, normal, diagnosed with GERD
8/26/10 Pedi Lupus Clinic Visit-patient not ready to transition to adult subspecialty care, F/U 3 months
10/26/10 Adult PCP Sick visit chest pain, shortness of breath
LOST TO ANY FOLLOW UP FOR 6 MONTHS
4/27/11 PCP Sick visit for concern of
PREGNANCY!
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
May-June 2011 Pedi-nephrologist contacts adult nephrologists to
discuss transition of care
06/21/11 Transition Clinic-Missed Appointment
06/25/11 Transition Clinic-Missed Appointment
10/10/11 Hospitalized at RIH
01/06/12 First appointment w/adult nephrologist
01/18/12 Renal biopsy, ADULT dx: lupus nephritis
03/25/12 First dose of Cyclophosphamide
Note: AW was told “you can’t get pregnant”
Goals for the Presentation
• Recognize Issues of
Transition
• Introduce Policies for
Practices
• Strategies for Care
Coordinators
• How to Prepare Families and
Youth
• Know Resources Available
• Best Practice
Recognize Issues of Transition
• Entitlement vs. Eligibility
• Youth (and Family)
Readiness
• Preparing for Age of
Consent / Majority
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)
Preparing for Age of Consent / Majority
• Age of Majority
• HIPPA
• FERPA
• Guardianship / Alternatives
to Guardianship
www.theriotrocks.org
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)
Policies for Practices
• Transition Concepts
• Portable Medical Summary /
Emergency Care Plan
• Practice Transition Policy
Policies for Practices- Transition Concepts
Pre-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 18
Transfer- Taking action moving from a pediatric to an adult health
care settings & adult systems of eligibility –between age 18-21
Medical Summary & Emergency Care Plan
• Snapshot of Current
Condition
• Insurance Information
• Communication
• Health Goals
• Medications
• ICE
Policies for Practice-Posted Policy
• Develop 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
Strategies for Care Coordination
• Prepare Families
• Employment First
• Workshops and conferences
• Prepare Youth
• Positive Youth Development
• Tools and Resources
• Know Resources
• Medical Home Portal
• NCQA-Continuity of Team
Based Care
Prepare Families
• Employment First
• BHDDH / DD /ORS
• Community Service /
Internships
• Transition Programs and
Regional Transition Centers
• Workshops
• Conferences
Prepare Youth
Positive Youth Development
Materials and Resources
Know Resources
Adult PCP-Best Practice for Care Coordination
• Identify and Interview Adult PCP’s
• Confirm date of first adult PCP appointment
• Complete a transfer package:
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Final readiness assessment
Plan of Care
Transition 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
Transition Completion
• Contact young adult and their
parent/caregiver 3 to 6
months after transfer
• Communicate with adult PCP
to offer assistance
• Build on-going collaborative
partnerships with adult PCP &
specialty practices
Thank you
• Colleen Polselli:
[email protected], 401-222-4615
• Deborah Golding
[email protected], 401-222-5954