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Family Voices of Tennessee

Family Voices of Tennessee. Presents Transition from Pediatric Care to Adult Health Services : Moving Forward . Materials developed by the Tennessee Disability Coalition with funding from :

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Family Voices of Tennessee

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  1. Family Voices of Tennessee Presents Transition from Pediatric Care to Adult Health Services: Moving Forward

  2. Materials developed by the Tennessee Disability Coalition with funding from: - The US Department of Human Services’ Health Resources and Services Administration, Maternal and Child Health Bureau (Project # H84MC00004-09-00)--The Tennessee Affordable Care Act Family-to-Family Health Information Center. - The U. S. Department of Education-Specifically, contents of this training module regarding the Americans with Disabilities Act (ADC) were developed under a subcontract from Syracuse University, under Prime Agreement Award Number H133A110021. However, those contents do not necessarily represent the policy of Syracuse University of the Department of Education, and you should not assume endorsement by Syracuse University or the Federal Government. - The Tennessee Disability Coalition.

  3. Session Overview Transfer of responsibility and decision-making Self Advocacy Skills Communication issues Private and public insurance Resources

  4. Transition is a Journey • Takes place over a period of time. • You need a map or plan. • You may take a detour now and then. • Transferring roles and responsibilities doesn’t happen overnight.

  5. Role of Parents • Parents/Families are key partners in transition • Question: How do you support your child’s autonomy and insure their safety? • Planning is important! • It has been shown that youth follow health care treatments when they have supportive parents.

  6. Moving from Parent to Coach • Begin to let youth make mistakes. Every mistake is an opportunity to increase competence. • Break habit of offering advice or problem-solving for understanding-take two deep breaths-this will slow you down. • Teach communication and problem-solving-it is key!

  7. Teachable Moments • Step back from managing and look for opportunities for youth to be involved. • Over time youth can gain competence and confidence. • Appropriate degree of independence. • Youth can have choices about their own care.

  8. Taking the Sidelines • As children become adults, it becomes a whole new ball game. • YOU are the coach! • What makes a great coach great? • Knowing the rules. • Understanding the game. • Knowing the strengths and weaknesses of the player. • Know that “you win some and lose some.” • Practice, practice, practice.

  9. What Are We Planning For? A plan for a child or youth with special health care needs to be independent (as possible) in managing his/her health care needs. Such as: • Understanding his/her diagnosis. • Understanding how to talk to his/her doctors to get needs met. • Being a partner in health care.

  10. Who is Planning? • Parents • Child/Youth/Young Adult • Pediatricians • Circle of Support • Others?

  11. Health is Part of Transition Things to consider • How does health affect: • What kind of job I have? • How and where I live? • Where I go for higher education? • What I do for recreation? • What I need in the community?

  12. Guidelines • Ask your doctor about the clinic transition policy-ask if it is posted • Talk about legal issues before 18 • Develop an individual care plan for transition • Assess transition skills-Changing roles • Identify a primary care provider • Consider co-management

  13. More Guidelines • Start early-simple daily routines build the foundation for good, healthy behaviors • Brushing teeth, washing hands, assisting in the bath • Safety rules-seatbelts, etc. • Exercise • Good nutrition • Personal privacy • Making choices

  14. Rules of the Game • Playbook • “The Who, What, When, Where, How and Why of My Health Care and Support Services” (Family Voices) • IEP and Transition plans from school; medical transition plan. • Collection of strategic documents that guide success. • Medical history, daily planners, contact information for important people in youth’s life.

  15. Knowledge of the Game • Ability to understand their own condition and treatment or intervention needed. • Explain their condition and needed treatments or interventions to others. • Monitor their health status on an ongoing basis. • Learn about the systems that will apply to them as adults. • Identify both formal and informal advocacy services and supports they may need.

  16. Knowledge of Rights under ADA(American with Disabilities Act) • It is about Civil Rights. • Protects you from being discriminated against due to your disability.

  17. ADA and Health Care Providers • The ADA requires health care providers to provide individuals with disabilities: • full and equal access to their health care services and facilities. • reasonable modifications to policies, practices, and procedures

  18. Examples of Health Care Provider Accommodations • an accessible exam table or a patient lift • enough trained staff available who can assist you to transfer • a qualified interpreter • written materials • assistive listening devices

  19. Pre-game Coaching Does your youth need coaching on particular skills? • Communicating medical needs? • Scheduling and keeping appointments? • Call or practice calling to make an appointment or refill medications. • Role play how to talk with a new MD. • Knowing what to do or who to call when sick or in a crisis.

  20. It is not just about special health needs! Health includes: • Hygiene • Nutrition • Exercise • Sexuality issues • Mental health

  21. Screen for All Health Needs • Nutrition (Stamina) • Exercise • Sexuality Issues • Mental Health • Routine (Immunizations, Blood-work, Vision, etc.) • Secondary Conditions/Disabilities • Accelerated Aging issues

  22. Transition and the Youth with Development Disabilities • Level of participation • Supports • Health advocate

  23. Example of Parent Checklist

  24. Health Insurance Coverage -With the ACA (Affordable Care Act) youth can stay on their family coverage until age 26. -The Affordable Care Act prohibits health plans from putting a lifetime dollar limit on most benefits you receive. The law also restricts and phases out the annual dollar limits a health plan can place on most of your benefits — and does away with these limits entirely in 2014. *NOTE: Plans can put an annual dollar limit and a lifetime dollar limit on spending for health care services that are not considered “essential.”

  25. Private Insurance Coverage • Check with your current insurance policy on what documents you need to continue coverage. • Will your premium increase dramatically? • What MDs are available for adults as you consider transitioning for your youth? • If your youth receives or will receive SSI and TennCare, will MD accept both insurances?

  26. Medicaid/TennCare Children up to 21 years EPSDT Vision-preventive and eyeglasses. Dental-preventive and needed work. Services must be deemed medically necessary. Adults 22 years and older Preventive checkup, such as pap smears. Dental-only accidental restoration. Vision-Yearly retinal exam for diabetics. Services must deemed medically necessary.

  27. Communicating With Your Doctor You should: Give info, don’t wait to be asked. Keep health history up to date. Bring medicine or list to EVERY visit. Tell if you are using natural or alternative medicine or treatments. Ask questions (if you don’t, your doctor assumes you understand)

  28. Example phone script for adolescent/young adult Hello, my name is ______________. I need an appointment to see _______________ because __________________________. How soon can I get in? Write date/time here _______________. If this time/date is okay, say: Thank you that will be fine. If not, say: That won’t work for me. Can you look for something else? How long is the appointment? Write amount of time here _____ Before you end the phone call, repeat the date/time of your appointment: Ok, I will be there on _______ at ________. Thank you. Good-bye.

  29. Preparing for the 15-minute Doctor Visit Know Your Health & Wellness Baseline • How does your body feel on a good day? • Prepare questions at each visit, • Give brief health status & overview of needs. • Know emergency plan when health changes. • What is your typical body temperature? • Respiration, heart rate and blood pressure.

  30. Example of a form a parent might use with adolescent/young adult when sick When I am sick Doctor’s Name _________________ Nurse ________________________ Care Coordinator _______________ Phone Numbers ________________ ______________________________ ______________________________

  31. Example of a form a parent might use with adolescent/young adult when sick

  32. Communicating Prioritize your list of questions and bring with you. Take notes, or you could bring a tape recorder. Let your doctor know if you need more time to talk. Remind staff when making appointment that you need extra time and what special accommodations you may need. Use a cheat sheet or other communication tool.

  33. With or without us - youth and families get older and will move on…Think what can make it easier; do what’s in your control and support youth to tackle what’s their control. Start early!!!!! Reinforce life span skills - Prepare for the marathon Assist youth to learn how to extend wellness, practice skills and learn Reality check: Have all of us done the prep work for the sendoff before the hand off?

  34. Example Autonomy Checklist

  35. Resources (Websites) Waisman Resource CenterWebsite: http://www.waisman.wisc.edu/wrc/pub.html Family Voices of Tennessee Website: http://www.tndisability.org/familyvoices/ Institute for Community Inclusion Website: http://www.communityinclusion.org/ Vanderbilt Kennedy Center Website: http://kc.vanderbilt.edu/site/default.aspx

  36. More Resources Access To Medical Care For Individuals With Mobility Disabilities http://www.ada.gov//medcare_ta.htm http://www.ada.gov//medcare_mobility_ta/medcare_ta.pdf Questions and Answers for Health Care Providers—Related to effective communication with individuals who are deaf or hard of hearing http://www.nad.org/issues/health-care/providers/questions-and-answers

  37. Resources (Books/PDF Files) My Medical History: A Journal for Keeping Track of Your Health Records (Potter Style) [Spiral-bound] Use this pocket guide to keep track of your health care information. The Transition to Health Care Checklist: Preparing for Life as an Adult [PDF format on the internet] The Transition to Health Care Checklist booklet is intended for youth and young adults who are preparing for the transition to life as an adult. The purpose of the booklet is to provide a general overview of the knowledge, skills and actions that need to be addressed as part of the fluid process of adolescent transition for youth with special health care needs. Transition to Adult Health Care: A Training Guide in Three Parts 2nd Edition [PDF format on the internet] This training guide will explain how to conduct a workshop and options for using the workbook and pocket guide that are included. Care has been taken to emphasize that while we are focusing on preparing youth with special health care needs for adult life, the information and skills presented are important for any young person.

  38. For More InformationContact: Family Resource Specialists and Newborn Parent Consultants 955 Woodland Street Nashville, TN 37206 615-515-8626/(888) 643-7811

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