1 Presenter 2 Janet Hess DrPH MPH Assistant Professor Project Director FloridaHATS University of South Florida College of Medicine Department of Pediatrics Adolescent Medicine ID: 781490
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Slide1
The Adult Years
Pediatric to Adult Medical Care
1
Slide2Presenter
2Janet Hess, DrPH, MPH
Assistant Professor Project Director, FloridaHATS University of South Florida College of Medicine Department of Pediatrics, Adolescent Medicine
jhess@health.usf.edu, (813) 259-8604
Slide3Acknowledgments
3
Florida Department of Health, CMS Managed Care PlanFlorida Health and Transition Services Florida Developmental Disabilities Council, Inc.Pat Slaski, Educational Consultant
Laurie James, Educational ConsultantJohn Reiss, PhD, University of FloridaRandy Miller, Educational Media Specialist
Slide4Agenda
4What is Health Care Transition?
Using the GLADD ApproachTools to Assist
Slide5Health Care Transition
…What and Why?
5
Slide66
Resources from CdLS Foundation
www.cdlsusa.org/what-is-cdls/cdls-publications.htm
Slide7Success in school, at work, & in the community
requires that you stay healthy! The best ways to stay healthy are to understand your own health
receive age-appropriate health servicesparticipate in health care decision-making
7
Slide8Transfer of Care
Discrete event, physical transfer from a pediatric to an adult provider; should occur between ages 18-21+
Preparation
Increased responsibility for health care self-management; understanding and planning for changes in health needs, insurance, and providers in adulthood; should occur across ages 12-21+ The purposeful, planned movement of adolescents and young adults from child-centered to adult-oriented health care systems.Health Care Transition (HCT) Health Care Transition Successful Transition Patients are engaged in and receive on-going patient-centered adult care.
8
Slide9After turning age 18:
Doctors and other health care providers must: Get informed consent from adult patients to carry out a medical procedure
Have the patient’s written permission to share health information with others
BUT…. Patients can ask family members or friends to help answer questions and fill out forms9
Slide10Adult patients should be able to:
10
Name chronic medical conditions or allergies Know the correct names of medications, when to take them, and whyTake medications independently
Order medications when needed Call to make doctor appointments Know what to do in case of an emergencyKnow what to do to stay healthy, and do it without being reminded If teens can’t do these things,they need to learn!
Slide11How are we doing?
11
2009-2010 National Survey of Children with Special Health Care Needs
Slide12Pediatric vs Adult Care
12
Professional culture and traditions
Pediatricians Adult PhysiciansChild- friendly CognitiveFamily-centered Patient-centeredInteract primarily Interact with patient with parentsNurturing Empower individualPrescription CollaborativeDevelopmental Focus Disease Focus
Slide13Communication Gaps
13
Between adult provider and youth/patient
Among providersPediatric knowledge of adult system physicians, resources and servicesLack of systematic transfer of records and co-management of care during transition
Slide14Adult System of Care
14
Provider capacity and training
Lack of adult physicians who are Trained in pediatric onset/developmental conditionsWilling to take primary responsibility for careService fragmentationMinimal case management in adult practicesLack of linkages to community-based adult servicesLow Medicaid reimbursement rates
Slide15Adequate Insurance Coverage
15
Aging out of health care plans/services ( state Title V, SCHIP) at age 19 or 21
ACA: Can stay on parents’ family plans up to age 26 Benefits in temporary jobs often limited, unavailable, or have high premiumsIncreased salary may lower/eliminate public benefits Limited benefits provided in adult Medicaid package
Slide16HCT Improvement Programs
16
Got Transition/ National Center for Health Care Transition Improvement Website, webinars, resources
Clinical Practice Learning Collaboratives Medical and Nursing Education FloridaHATS State Title V Plan for HCT Clearinghouse of HCT information for consumers, educators, and providers Regional coalitions Health Service Directory for Young Adults
Slide17What YOU can do: Take charge of your health care!
17
Use the GLADD approach when talking to doctors or nurses and in managing health care:
Give information Listen and learn Ask questionsDecide on a planDo your partTeach your child how to use GLADD!
Slide18G
LADD
Give Information
18
Slide19Communicate how you are feeling
19
Be HONEST in giving complete, detailed informationDescribe how your condition affects your every day life Describe symptoms
Handy High 5: Who, what, when, where, why Keep a medical diary Use visual aids if neededPain ScalesHealth Pictures, Communication Boards
Slide2020
Tools to Assist
Slide2121
Tools to Assist
Slide22G
LADD
Listen and Learn
22
Slide23Practice good listening skills
23Listening includes UNDERSTANDING
Pay attention to body language
Sit upLean inAsk questionsNodTrack the speaker
Slide24Remember what is said
24
Write down information
Take notes in a health diary Use a voice recorder to enhance information recall and understanding Free iphone recording apps Always ask for permission before recordingPractice before you go to the doctor’s office
Slide25Learn more about your condition
25
Read booksExplore the InternetAsk your doctor/nurse for recommended web sites
Considerations for your jobEnvironmentSpecial dietary or medication needs Accessibility Stamina and strength issuesTalk to people who have the same or a similar condition
Slide26GL
ADDA
sk Questions
26
Slide27Prepare questions ahead of time
27
Be prepared with questions and issues to discuss at office visits Write questions on paper
Record them on a voice recorderIf you don’t understand what you’re being told:Let your doctor/nurse knowAsk them to explain in a different wayAsk for written instructions or materials to take homeKeep asking until you understand There’s no such thing as a DUMB question!
Slide28Tools to Assist
www.npsf.org/?page=askme3
Ask Me 3
AHRQ Question Builder www.ahrq.gov/patients-consumers/question-builder.html
Slide29HillsboroughHATS Post Card
29
www.floridahats.org/?page_id=596
Slide30GLA
DD
Decide on a Plan of Care
30
Slide31Participate in developing a plan of care
31With your doctor or nurse, decide:
What medical services will be neededWho will provide them
How will they be paid for With your health care team and circle of support, set longer term goals for health, education, work and independent living Explore community resources that can help you reach your goals Your doctor may need to provide documentation of medical condition/disability to meet program eligibility guidelines
Slide32CdLS: Navigating Healthcare Transitions
32
www.cdlsusa.org/what-is-cdls/cdls-publications.htm
Slide33National Center for Health Care Transition Improvement
www.gottransition.org
33
Got Transition
Slide34Florida’s clearinghouse for HCT information
www.FloridaHATS.org
34
FloridaHATS
Slide35School
Incorporate self-advocacy and self-management skills in school IEP
Transition IEPs, which are introduced at age 14 in Florida, should outline a pathway to post-secondary independent living
Project 10 (www.project 10.info) is Florida Department of Education’s statewide transition initiative Includes employment training, post-secondary education and independent living resources
35
Slide36Classroom
Curriculum
Videos and Lesson Plans
Parent/ Student HandoutsSchool Resources36www.floridahats.org/?page_id=2197
Slide37Plan for change in insurance coverage
Medicaid
Parents’ plan
Employer-basedMarketplace plans www.floridahats.org/?page_id=627
Health Insurance 37
Slide38Sexual Health
High incidence of sexual abuse among persons with I/DD
Most abusers are service providers
Lack of education about how to properly act on urges can cause major issues Unacceptable public displays Unwarranted sexual harassmentSexuality & Developmental Disabilities Across the Lifespan: Helps educators and family members assist with exploration of self and sexuality, www.fddc.org/sites/default/files/file/publications/Sexuality%20Guide-Parents-English.pdf
38
Slide39Employment
Apply to Division of Vocational Rehabilitation 2 years before leaving high school
39
www.floridahats.org/?page_id=3506
Slide40Turning 18: Age of Majority
Legal responsibilities
Financial
Decision-Making Florida Bar’s #JustAdulting Legal Survival Guide for new adults, www.justadulting.com/ Disability benefits determined by ability to work 40
Slide41Decision Making
https://youtu.be/CpvIyfiRjRM
Slide42Consider decision making alternatives, such as including guardianship or guardian advocacy
Explore long-term financial planning options, such as a special needs trust
www.floridahats.org/?page_id=614
42
Guardianship
Slide43Redetermination at age 18
Stricter eligibility requirements
www.floridahats.org/?page_id=614
SSI 43
Slide44Primary Care
Specialty Care
www.floridahats.org/?page_id=631
Ages 18-21: Transfer of Care
44
Slide45Practice negotiating skills
45
It is important to provide feedback to the physician about your treatment plan Can you follow the plan? If not, why not?
Are there alternative treatment options? Tips for negotiatingKnow what you want and whyPlan what you will sayBe truthfulBe assertive
Slide46Self-Advocacy Guides
46
www.floridahats.org/?page_id=616
Slide47GLA
DDD
o Your Part
47
Slide48Carry a health summary with you
48
Put personal health information in one place and keep it updated Medical history and medications
Equipment and supply needs Physician, hospital, emergency contactsHealth insurance Be able to access it easily Paper copy Thumb driveElectronic Patient Portal
Slide49Tools to Assist
49
http://www.gottransition.org/resourceGet.cfm?id=227
Slide5050
Tools to Assist
http://flfcic.fmhi.usf.edu/program-areas/health.html
Slide51Learn how to schedule and navigate doctor’s visits
51
Practice scheduling your doctor’s appointment Arrange for transportationFill out paperwork at the doctor’s office
Medical historyInsuranceConsent to TreatHIPAA Privacy form Ask questions if you don’t understand, and don’t be afraid to ask for help!
Slide52Tools to Assist
52
Short Videos
with step-by-step instructionswww.floridahats.org/?page_id=616
Slide53Manage your medications
53
Learn the correct names of your medicines, when you take them, and why
Be able to read prescription labels Be able to refill your prescriptions Bring a list of your medications to doctor visitsKeep a chart with times you need to take medicine and dosageIf you take several medications, a pill organizer can help
Slide54Tools to Assist
54
https://secure.medactionplan.com/mymedschedule/transplantexperience/
http://hscj.ufl.edu/JaxHATS/Videos.aspx
Slide55Give –
Listen – Ask – Decide – Do
55
Communicate how you are feeling (Handy High 5) Practice good listening skills (SLANT) Remember what your doctors/nurses say (try a voice recorder!)Learn more about your condition (books, web site)Prepare questions ahead of time (Ask Me 3) Participate in developing a plan of care (lots of online resources!) Practice negotiating skills (self-advocacy guides) Carry a health summary with you (use a template) Learn how to schedule and navigate doctor’s visits (watch videos and practice)Manage your medications (MyMedSchedule.com)