Transcript The Adults Years: Pediatric to Adult Medical Care

The Adult Years
Pediatric to Adult Medical Care
1
Presenter

Janet Hess, DrPH, MPH
Assistant Professor
Project Director, FloridaHATS
University of South Florida College of Medicine
Department of Pediatrics, Adolescent Medicine
[email protected], (813) 259-8604
2
Acknowledgments
Florida Department of Health, CMS Managed Care Plan
Florida Health and Transition Services
Florida Developmental Disabilities Council, Inc.
Pat Slaski, Educational Consultant
Laurie James, Educational Consultant
John Reiss, PhD, University of Florida
Randy Miller, Educational Media Specialist







3
Agenda

What is Health Care Transition?

Using the GLADD Approach

Tools to Assist
4
Health Care Transition
…What and Why?
5
Resources from CdLS Foundation
www.cdlsusa.org/what-is-cdls/cdls-publications.htm
6
Success in school, at work, & in the community
requires that you stay healthy!
The best ways to stay healthy are to




7
understand your own health
receive age-appropriate health services
participate in health care decision-making
Health Care Transition
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+
Health Care Transition (HCT)
The purposeful, planned movement
of adolescents and young adults from
child-centered to adult-oriented
health care systems.
Transfer of Care
Discrete event, physical transfer from
a pediatric to an adult provider;
should occur between ages 18-21+
Successful Transition
Patients are engaged in and receive
on-going patient-centered adult care.
8
After 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 forms

9
Adult patients should be able to:







Name chronic medical conditions or allergies
Know the correct names of medications, when to take them,
and why
Take medications independently
Order medications when needed
Call to make doctor appointments
Know what to do in case of an emergency
Know what to do to stay healthy, and do it without being
reminded
If teens can’t do these things,
they need to learn!
10
How are we doing?
2009-2010 National Survey of Children with Special Health Care Needs
11
Pediatric vs Adult Care

Professional culture and traditions
Pediatricians
Child- friendly
Family-centered
Interact primarily
with parents
Nurturing
Prescription
Developmental Focus
12
Adult Physicians
Cognitive
Patient-centered
Interact with patient
Empower individual
Collaborative
Disease Focus
Communication Gaps

Between adult provider and youth/patient

Among providers

Pediatric knowledge of adult system physicians,
resources and services

Lack of systematic transfer of records and comanagement of care during transition
13
Adult System of Care

Provider capacity and training

Lack of adult physicians who are



Service fragmentation



Trained in pediatric onset/developmental conditions
Willing to take primary responsibility for care
Minimal case management in adult practices
Lack of linkages to community-based adult services
Low Medicaid reimbursement rates
14
Adequate Insurance Coverage

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 premiums

Increased salary may lower/eliminate public benefits

Limited benefits provided in adult Medicaid package
15
HCT Improvement Programs

Got Transition/ National Center for Health Care
Transition Improvement




Website, webinars, resources
Clinical Practice Learning Collaboratives
Medical and Nursing Education
FloridaHATS




16
State Title V Plan for HCT
Clearinghouse of HCT information for consumers,
educators, and providers
Regional coalitions
Health Service Directory for Young Adults
What YOU can do:
Take charge of your health care!

Use the GLADD approach when talking to doctors
or nurses and in managing health care:






Give information
Listen and learn
Ask questions
Decide on a plan
Do your part
Teach your child how to use GLADD!
17
GLADD
Give Information
18
Communicate how you are feeling



Be HONEST in giving complete, detailed information
Describe 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 needed


19
Pain Scales
Health Pictures, Communication Boards
Tools to Assist
20
Tools to Assist
21
GLADD
Listen and Learn
22
Practice good listening skills


Listening includes UNDERSTANDING
Pay attention to body language





23
Sit up
Lean in
Ask questions
Nod
Track the speaker
Remember what is said

Write down information


Take notes in a health diary
Use a voice recorder to enhance information recall
and understanding



24
Free iphone recording apps
Always ask for permission before recording
Practice before you go to the doctor’s office
Learn more about your condition


Read books
Explore the Internet


Considerations for your job





Ask your doctor/nurse for recommended web sites
Environment
Special dietary or medication needs
Accessibility
Stamina and strength issues
Talk to people who have the same or a similar
condition
25
GLADD
Ask Questions
26
Prepare questions ahead of time

Be prepared with questions and issues to discuss
at office visits



If you don’t understand what you’re being told:





Write questions on paper
Record them on a voice recorder
Let your doctor/nurse know
Ask them to explain in a different way
Ask for written instructions or materials to take home
Keep asking until you understand
There’s no such thing as a DUMB question!
27
Tools to Assist
Ask Me 3
www.npsf.org/?page=askme3
AHRQ Question Builder
www.ahrq.gov/patients-consumers/question-builder.html
HillsboroughHATS Post Card
www.floridahats.org/?page_id=596
29
GLADD
Decide on a Plan of Care
30
Participate in developing a plan of care

With your doctor or nurse, decide:





What medical services will be needed
Who 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

31
Your doctor may need to provide documentation of medical
condition/disability to meet program eligibility guidelines
CdLS: Navigating Healthcare Transitions
www.cdlsusa.org/what-is-cdls/cdls-publications.htm
32
Got Transition
National Center for
Health Care Transition Improvement
www.gottransition.org
33
FloridaHATS
Florida’s clearinghouse for HCT information
www.FloridaHATS.org
34
School
 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

35
Includes employment training, post-secondary education and
independent living resources
School Resources
Classroom
Curriculum
Videos and Lesson Plans
www.floridahats.org/?page_id=2197
36
Parent/ Student
Handouts
Health Insurance

Plan for change in insurance
coverage

Medicaid

Parents’ plan

Employer-based

Marketplace plans
www.floridahats.org/?page_id=627
37
Sexual 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 harassment
 Sexuality
& 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-ParentsEnglish.pdf
38
Employment

Apply to Division of
Vocational Rehabilitation
2 years before leaving
high school
www.floridahats.org/?page_id=3506
39
Turning 18: Age of Majority
 Legal
responsibilities

Financial

Decision-Making

Florida Bar’s #JustAdulting Legal Survival Guide for new
adults, www.justadulting.com/
 Disability
40
benefits determined by ability to work
Decision Making
https://youtu.be/CpvIyfiRjRM
Guardianship

Consider 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
SSI
 Redetermination
at age 18
 Stricter
eligibility
requirements
www.floridahats.org/?page_id=614
43
Ages 18-21: Transfer of Care

Primary Care

Specialty Care
www.floridahats.org/?page_id=631
44
Practice negotiating skills

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 negotiating




45
Know what you want and why
Plan what you will say
Be truthful
Be assertive
Self-Advocacy Guides
www.floridahats.org/?page_id=616
46
GLADD
Do Your Part
47
Carry a health summary with you

Put personal health information in one place and
keep it updated





Medical history and medications
Equipment and supply needs
Physician, hospital, emergency contacts
Health insurance
Be able to access it easily



48
Paper copy
Thumb drive
Electronic Patient Portal
Tools to Assist
http://www.gottransition.org/resourceGet.cfm?id=227
49
Tools to Assist
http://flfcic.fmhi.usf.edu/program-areas/health.html
50
Learn how to schedule
and navigate doctor’s visits



Practice scheduling your doctor’s appointment
Arrange for transportation
Fill out paperwork at the doctor’s office





Medical history
Insurance
Consent to Treat
HIPAA Privacy form
Ask questions if you don’t understand, and
don’t be afraid to ask for help!
51
Tools to Assist
Short Videos
with step-by-step instructions
www.floridahats.org/?page_id=616
52
Manage your medications






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 visits
Keep a chart with times you need to take medicine
and dosage
If you take several medications, a pill organizer
can help
53
Tools to Assist
https://secure.medactionplan.com/m
ymedschedule/transplantexperience/
http://hscj.ufl.edu/JaxHATS/Videos.aspx
54
Give – Listen – Ask – Decide – Do
1.
2.
3.
4.
5.
6.
7.
8.
9.
10.
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)