The Adult Years Pediatric to Adult Medical Care

The Adult Years Pediatric to Adult Medical Care 1

Presenter � Janet Hess, Dr. PH, MPH Assistant Professor Project Director, Florida. HATS University of South Florida College of Medicine Department of Pediatrics, Adolescent Medicine jhess@health. usf. edu, (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, Ph. D, 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 Cd. LS 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 � understand your own health � receive age-appropriate health services � participate in health care decision-making 7

Preparation Health Care Transition (HCT) The purposeful, planned movement of adolescents and young adults from child-centered to adult-oriented health care systems. 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+ 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 Ø Between adult provider and youth/patient Ø Among providers Ø Pediatric knowledge of adult system physicians, resources and services Ø Lack of systematic transfer of records and comanagement of care during transition 13

Adult System of Care �Provider �Lack Ø Ø of adult physicians who are Trained in pediatric onset/developmental conditions Willing to take primary responsibility for care �Service Ø Ø fragmentation Minimal case management in adult practices Lack of linkages to community-based adult services �Low 14 capacity and training Medicaid reimbursement rates

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 �Florida. HATS � State Title V Plan for HCT � Clearinghouse of HCT information for consumers, educators, and providers � Regional coalitions � Health Service Directory for Young Adults 16

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 17 your child how to use GLADD!

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 � Pain Scales � Health Pictures, Communication Boards 19

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 � Sit up � Lean in � Ask questions � Nod � Track the speaker 23

Remember what is said � 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 recording � Practice before you go to the doctor’s office 24

Learn more about your condition �Read books �Explore the Internet � Ask your doctor/nurse for recommended web sites �Considerations for your job � 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 � Write questions on paper � Record them on a voice recorder �If you don’t understand what you’re being told: � 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 27 no such thing as a DUMB question!

Tools to Assist Ask Me 3 AHRQ Question Builder www. npsf. org/? page=askme 3 www. ahrq. gov/patients-consumers/questionbuilder. html

Hillsborough. HATS 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 � Your 31 doctor may need to provide documentation of medical condition/disability to meet program eligibility guidelines

Cd. LS: 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

Florida. HATS Florida’s clearinghouse for HCT information www. Florida. HATS. org 34

School Ø Incorporate self-advocacy and self-management skills in school IEP Ø Transition IEPs, which are introduced at age 14 in Florida, should outline a pathway to postsecondary independent living Ø Project 10 (www. project 10. info) is Florida Department of Education’s statewide transition initiative Ø 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 Ø Plan for change in insurance coverage Ø Medicaid Ø Parents’ plan Ø Employer-based Ø Marketplace plans www. floridahats. org/? page_id=6 27 37

Sexual Health Ø High incidence of sexual abuse among persons with I/DD § Most abusers are service providers Ø Lack of education about how to properly act on urges can cause major issues § § Unacceptable public displays Unwarranted sexual harassment Ø Sexuality & Developmental Disabilities Across the Lifespan: § 38 Helps educators and family members assist with exploration of self and sexuality, www. fddc. org/sites/default/files/file/publications/Sexuality%20 Guide. Parents-English. pdf

Employment Ø Apply to Division of Vocational Rehabilitation 2 years before leaving high school www. floridahats. org/? page_id=3506 39

Turning 18: Age of Majority Ø Legal responsibilities § Financial § Decision-Making § Florida Bar’s #Just. Adulting Legal Survival Guide for new adults, www. justadulting. com/ Ø Disability 40 benefits determined by ability to work

Decision Making https: //youtu. be/Cpv. Iyfi. Rj. RM

Guardianship Ø Consider decision making alternatives, such as including guardianship or guardian advocacy Ø Explore long-term financial planning options, such as a special needs trust www. floridahats. org/? page_id=614 42

SSI Ø Redetermination at age 18 Ø Stricter eligibility requirements www. floridahats. org/? page_id=614 43

Ages 18 -21: Transfer of Care Ø Primary Care Ø 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 � Know what you want and why � Plan what you will say � Be truthful � Be assertive 45

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 � Paper copy � Thumb drive � Electronic Patient Portal 48

Tools to Assist 49 http: //www. gottransition. org/resource. Get. cfm? id=2 27

Tools to Assist http: //flfcic. fmhi. usf. edu/programareas/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 52 www. floridahats. org/? page_id=6 16

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. co m/mymedschedule/transplantexp erience/ http: //hscj. ufl. edu/Jax. HATS/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 (My. Med. Schedule. com)