PREPARING ADOLESCENTS FOR SELF-CARE

A Transition Toolkit for Iowa’s Community Health Centers

DEVELOPED BY RACHEL NASH UNIVERSITY OF IOWA COLLEGE OF PUBLIC HEALTH

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Acknowledgements Special thanks are extended to the providers and staff at River Hills Community Health Center for their assistance in piloting and testing the materials in this toolkit. We greatly appreciate their willingness to participate and all the hard work they put in to make this innovation a success. They have been real champions for improving the adolescent transition process. It is our hope that other health centers will recognize their dedication and will also adopt these tools to improve patient care across Iowa. I would personally like to express my sincere appreciation to Pamela Lester, Holly Bain, and Deb Kazmerzak for their valuable and constructive suggestions during the planning and development of this project. Their enthusiasm and willingness to give time so generously has been very much appreciated.

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Table of Contents

Topic Area Page The Basics Introduction 4 Why Transition? – Clinical Evidence 5-6 Transition and the Medical Home 7-8 Practical Tools for Health Centers Step-by-Step – Transition Quality Improvement 9-12 Gap Assessment Tools 13 Healthcare Transition Policies 14 Using the Electronic Health Record to Improve Transition 15-19 Evaluating Success: Tracking Data and Reporting 20-30 Helpful Resources Learn From Others - Case Studies & Pilot Projects 31-32 Provider Transition Training and Continuing Education 33 Youth & Family Resources General Resources 34-35 Youth with Disabilities 36 Youth with Chronic Conditions 37 Get Covered - Health Insurance for Youth 38 Extras Appendix 1: AAP clinical report algorithm 39-40 Appendix 2: River Hills CHC Nurse Training PowerPoint 41

Appendix 3: River Hills CHC Provider PowerPoint 41 Appendix 4: Frequently Asked Questions for Parents 42

Appendix 5: Transition Policy Script for Nursing Staff 43 References 44-47

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Introduction

Transition is the term used to describe the process by which adolescents move into adulthood. Transition encompasses ALL facets of adult life, including healthcare, education, employment, socialization and recreation. The goal of transition is for adolescents to move toward independence. Remember: transition is a process, not an event the transition process should begin early the adolescent and his/her family should be involved in all decisions providers and parents should prepare to facilitate change coordination of services and providers is essential

This toolkit was compiled to share resources with providers and practices that are looking to improve the purposeful, planned transition from pediatric to adult healthcare for their adolescent patients. This toolkit also highlights lessons learned from a performance improvement project piloted at River Hills Community Health Center in Southeast Iowa. Optimal health care is achieved when each person, at every age, receives medically and developmentally appropriate care. That includes ensuring that high-quality services are available in an uninterrupted manner as the person moves from adolescence to adulthood. The goal of a planned health care transition is to maximize lifelong functioning and well-being for all youth. Community Health Centers serve as the medical home for many young patients in Iowa. In fact, children and young adults, ages 0 to 34, make up 60% of the safety net patient population. Therefore, providers in these settings play a critical role in supporting adolescents during this period of rapid change and growing independence. FQHCs are uniquely positioned to support the most vulnerable youth in the communities they serve. By preparing adolescents for the adult healthcare environment and empowering youth to take responsibility for their own care, providers can facilitate a smooth transition from pediatric to adult systems. While some information shared in this toolkit is specific to River Hills Community Health Center, it is hoped that the tools and lessons learned can assist other health centers in implementing similar performance improvement projects. Providers may also use the tools in this toolkit for their own clinical use. For more information on transition and the River Hills CHC Pilot Project, contact Deb Kazmerzak, Senior Program Director, at dkazmerzak@iowapca.org.

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Clinical Evidence A clinical report—Supporting the Health Care Transition from Adolescence to Adulthood in the Medical Home—appears in the July 2011 issue of Pediatrics. The report is jointly authored by the American Academy of Pediatrics (AAP), the American Academy of Family Physicians (AAFP), and the American College of Physicians (ACP) and the provides practical, detailed guidance on how to plan and execute better health care transitions for all patients. “A well-timed transition from child- to adult-oriented health care is specific to each person and ideally occurs between the ages of 18 and 21 years” (although it should begin much earlier). Refer to Appendix 1 for full algorithm.

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Peer-Reviewed Journal Articles: A Consensus Statement on Health Care Transitions for Young Adults With Special Health Care Needs (2002) Pediatrics Supplement on Transition (2002) American Academy of Pediatrics: The State of Transitions (2008) A Primary Care Quality Improvement Approach to Health Care Transition (2012) Advancing healthcare transitions in the medical home: tools for providers, families and adolescents with special healthcare needs (2013) – abstract only Video: Advancing healthcare transitions (Boston Children’s Hospital) Got Transition: Center for Healthcare Transition Improvement Got Transition aims to advance access to effective transition support from pediatric to adult health care for all youth, including those with special needs. Aligned with the clinical report above, Got Transition supports practices in the implementation and evaluation of transition quality improvement through the Six Core Elements of Health Care Transition. Got Transition is supported by a cooperative agreement between the US Maternal and Child Bureau/HRSA and the National Alliance to Advance Adolescent Health. Comprehensive tool packages are available for three transition processes: 1) transitioning youth to adult health care providers, 2) transitioning youth to an adult approach to health care without changing providers 3) integrating youth into adult health care. Compare: http://www.gottransition.org/UploadedFiles/Files/SideBySide.pdf

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Transition and the Medical Home

The patient-centered medical home is a way of organizing primary care that emphasizes care coordination and communication to transform primary care into "what patients want it to be." Medical homes can lead to higher quality and lower costs, and can improve patients’ and providers’ experience of care. Health care transitions are part of that care coordination. The Society for Adolescent Medicine defines the Health Care Transition (HCT) as “the purposeful, planned movement of adolescents and young adults from child-centered to adult-oriented health care systems.” The National Committee for Quality Assurance (NCQA) Patient-Centered Medical Home (PCMH) Recognition is the most widely-used way to transform primary care practices into medical homes. Iowa’s FQHCs are working hard to transform their practices in order to achieve this recognition. The new 2014 PCMH Standards and Guidelines were just released and are available for centers to view. How does transition fit into the PCMH model? Since 2011, practices have been encouraged to “collaborate with the patient/family to develop a written care plan for patients transitioning from pediatric care to adult care” as part of receiving Patient Centered Medical Home recognition from the National Committee for Quality Assurance (NCQA).

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In the 2014 Standards and Guidelines, transition appears in two locations: • Standard 2 (Team-Based Cared), Element A (Continuity), Factor 4

(see chart above) • New Standard 5 (Care Coordination and Care Transitions), Element C

(Coordinate Care Transitions), Factor 6 states that a medical home “Obtains proper consent for release of information and has a process for secure exchange of information and for coordination of care with community partners.”

What does this mean for Community Health Centers? During the transition from pediatric to adult care, it is important to promote health, disease prevention, and psychosocial adjustment to adulthood. A practice's written care plan should focus on obtaining adult primary, emergency, and specialty care and can include: a summary of medical information (e.g., history of hospitalizations, procedures, tests), a list of providers, medical equipment and medications for patients with special health care needs, identified obstacles to transitioning to an adult care clinician, and arrangements for release and transfer of medical records to the adult care clinician. The National Center for Medical Home Implementation (NCMHI) is a cooperative agreement between the Maternal and Child Health Bureau (MCHB) and the American Academy of Pediatrics (AAP). They offer a variety of resources on how to implement transition planning as part of your medical home, as well as a Spotlight on Child Health Issues newsletter article focused on transitioning. In addition, they offer a step-by-step process for building your pediatric medical home. For more information on Iowa’s Medical Home Initiatives, click here. NCMHI Medical Home Videos How does a medical home support transitioning from pediatric to adult care? - W. Carl Cooley, MD Why should providers prepare patients/families to transition to adult care? - Eileen Forlenza Other Medical Home Resources This May 2013 article from the National Initiative for Children's Healthcare Quality shares examples of how pediatric medical homes are helping young adults make smooth transitions to adult care. Best Practices for Youth Friendly Clinical Services (Advocates for Youth) Center for Medical Home Improvement

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Performance Improvement Step-By-Step A major goal of Community Health Centers is to improve care according to the Triple Aim. The Triple Aim is a framework developed by the Institute for Healthcare Improvement that describes an approach to optimizing health system performance. It is IHI’s belief that new designs must be developed to simultaneously pursue three dimensions: Improving the patient experience of care (including quality and

satisfaction); Improving the health of populations; and Reducing the per capita cost of health care.

Before you begin any quality improvement (QI)/performance improvement (PI) initiative, you should think critically about 3 questions:

• What are we trying to accomplish? (set an aim) o RH Pilot: After two months, increase the number of adolescent

patients being seen at the pediatric clinic that have an age-appropriate discussion with the provider about transitioning from 0 to 50%.

o Long term: Increase the number of adolescent patients with a chronic condition that successfully transfer to an adult provider.

• How will we know that a change is an improvement? (quantify improvement)

o RH Pilot: Improving the process/workflow by which adolescent patients are educated about the transition process and ensuring that all adolescents have the supports in place to successfully transition to an adult provider by ages 18-21. Continue to elicit feedback from providers and patients about the process.

• What changes can we make that will result in an improvement? o RH Pilot: Install a form in the Electronic Health Record with age-

specific questions to prompt the provider when rooming the patient or during the visit. Train nursing staff and pediatric team members on how to use this new form and monitor use of the form – make adjustments as necessary.

Wherever possible, use SMART goals and objectives! They should be: Specific Measurable Attainable Relevant Time-oriented

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The plan–do–study–act (PDSA) cycle is a four–step model for carrying out change. Just as a circle has no end, the PDSA cycle should be repeated again and again for continuous improvement. This model for improvement is extensively utilized by the Institute for Healthcare Improvement. The PDSA model has been successfully applied in several inpatient and outpatient healthcare settings to improve clinical quality and patient outcomes. We completed one cycle of the PDSA cycle during our River Hills Project, and to ensure sustainability, the Quality Assurance Manager will continue to make small tests of change to further improve the process and tailor to the needs of this specific community health center. 15 Steps for Community Health Centers to Implement Transition QI Initiative: This list was developed from the pilot initiative at River Hills and includes many important “lessons learned.” Some of these steps were incorporate and improved our success with the initiative; others we were unable to implement in the time given, but will improve the initiative in the future.

1. Identify champions and key stakeholders who want/need be involved (Quality Assurance Staff, Administrators, Clinic Coordinators, Pediatric Providers, Nursing Staff, CEO, Clerical Staff, IT, Adult Providers)

2. Discuss why transitioning youth is important and decide if this project is a priority for your CHC (pull outcome data on adolescent patient population)

3. Brainstorm ideas to improve the healthcare transition from pediatric to adult healthcare. Some examples:

o Add education materials to waiting room o Implement a form in the Electronic Health Record o Update the transition policy at your CHC o Start a transitioning youth registry to track at-risk patients o Create chronic disease teen groups to discuss transitioning topics o Form a partnerships with adult providers to ease transition referrals

Step 1: Plan—Plan the test or observation, including a plan for collecting data Step 2: Do—Try out the test on a small scale Step 3: Study—Set aside time to analyze the data and study the results Step 4: Act—Refine the change, based on what was learned from the test

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4. Identify gatekeepers (eg. clinic director) and make sure they are on board with the initiative – one individual can be the key to your success!

5. Decide what are the most feasible and important changes for your practice and delegate who will make the necessary changes.

6. Practice facilitation: take time to train necessary staff on the changes to

their daily workflows, allow time for feedback and questions and keep record of everything in your notes – that feedback may be important later! ‘Lunch and learn’ meetings are a great place to do this training.

7. Create an environment in which input on the project is welcomed. Allow

time for focus groups with different stakeholder groups and make sure no one is being excluded from the discussions (including youth and families).

8. Once changes are implemented and staff is trained, run daily/weekly

reports and monitor progress. It is important to have process measures in place to ensure that the expected changes are actually being completed.

9. Send encouraging e-mails or notes of praise to the providers that are

doing a good job. Offer assistance to providers that may be struggling.

10. Be available and excited – if you aren’t, no one else will be! 11. After a month of two – submit a progress report to the entire organization

to highlight successes and continued areas for improvement.

12. Present to your Committee for Quality Improvement (if you have one).

13. To ensure sustainability of the program, identify staff and providers who are willing to continue to move the project forward.

14. Run monthly reports and after one year, consider disseminating another

survey to assess progress.

15. Be responsive to questions and concerns – use feedback to continue to improve and make small changes.

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Other Quality Improvement Tools: Practice Performance Measurement (American Academy of Pediatrics) Education in Quality Improvement for Pediatric Practice (EQIPP) is a unique online learning program developed by the American Academy of Pediatrics (AAP) that weaves improvement principles and concepts with pediatric-specific clinical content. Quality Improvement Innovation Networks (QuIIN) Institute for Healthcare Improvement Transition QI Articles: A Primary Care Quality Improvement Approach to Health Care Transition (2012) Pediatricians’ Interest in Expanding Services and Making Practice Changes to Improve the Care of Adolescents (2009) Additional resources to improve transition in your clinic: Transition Readiness Changing Roles for Youth (Got Transition?) Transition Readiness Changing Roles for Families (Got Transition?) River Hills CHC Nurse Training PowerPoint (see Appendix 2) River Hills CHC Pediatric Provider Focus Group PowerPoint (see Appendix 3) River Hills CHC Frequently Asked Questions for Parents (see Appendix 4)

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Gap Assessment Tools

Before implementing a transition improvement program, it is helpful to conduct a formative evaluation to assess the strengths and weaknesses of the practice and to identify opportunities and threats to program success. A gap assessment tool can be a useful way to quickly survey the providers and staff at the FQHC in order to get a snapshot of the practice’s transition protocols and to determine areas of improvement. For our pilot project at River Hills Community Health Center, we used the Medical Home Healthcare Transition Index for Youth Up to Age 18. The HCTI <18 is modeled after CMHI’s (Center for Medical Home Improvement) validated Medical Home Index, a primary care office practice self-assessment and classification tool. HCTI <18 is intended for use within any setting that is preparing youth for the transition to adult-oriented care. This self-assessment tool was given to all the pediatric providers at the beginning of this initiative to get a baseline assessment of their current policies, procedures, and areas for improvement. There are six themes individuals are asked to assess their practice on:

1. Office healthcare transition policy 2. Staff and provider knowledge and skills 3. Identification of transitioning youth 4. Transition preparation 5. Transition planning 6. Transfer of care

For each of these items, providers should select one level (1-4) which best describes their practice and then within the level select either “partial” or “complete.” So there are a total of 8 options for each indicator and they choose one (eg. level 1, partial) on the scale which they believe describes their current level of implementation. As a companion tool, the Healthcare Transition Index for Adolescents and Young Adults Age 18 and older is intended for use within any setting that is accepting youth to transition to adult-oriented care. Family practice and internal medicine clinics can use this tool to assess their readiness to accept transitioning youth.

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Healthcare Transition Policies Here are some key steps to creating a transition policy from the National Institute for Children’s Healthcare Quality:

• Collaborate with providers, support staff, and parents to develop a gradual transition plan policy.

• Present the proposed policy to staff as a work in progress. • Test the policy. • Collect feedback, refine the process and continue testing. • Develop written documents for patients and parents outlining the policy. • Advise staff to communicate early and openly with patients and parents

about transitioning. • Remember to be mindful of patient differences and advise staff to tailor

transitioning plans accordingly. • Remain open to feedback and additional changes as patients and staff

acclimate to the new standards. The National Health Care Transition Center (Got Transition?) also offers some tips and examples to help your Community Health Center create or adapt a healthcare transition policy. Example healthcare transition policy: (Got Transition?) Sunshine Pediatrics Transition of Care Policy for Youth and Young Adults Sunshine Pediatrics models its transition policy upon the guidelines provided by the American Academy of Pediatrics’ joint clinical report on transition and by Bright Futures. We believe that a smooth transition from adolescence to young adulthood includes the explicit transition from a pediatric to an adult health care model and the eventual transfer of health care to adult providers. This process requires joint planning, preparation, and implementation to begin by age 13. At age 18, most youth in our practice will transition to an adult model of care with modifications as needed for youth with intellectual disabilities though the actual transfer of care to adult providers may take place later. We honor the preferences of the youth and family regarding the eventual transfer of care to an adult primary care medical home, but we generally expect this to occur at sometime between 18 and 21 years of age. Our approach to the care of young adults age 18 and older meets HIPAA and state privacy and consent requirements making the young adult the sole decision-maker about care and about the sharing of personal health information. Exceptions to this approach require legal authority through the signed consent of the young adult, legally valid custodial care or power of attorney documentation, or an adjudicated guardianship arrangement. See Appendix 6 for River Hills Transition Policy Script, which nursing staff used to introduce the transition policy to parents and adolescents.

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Using the Electronic Health Record to Improve Transition Important note: Not all Electronic Health Records and population health management software programs have the same content and functionality. The EHR used in this toolkit is GE Centricity. Specific examples are taken from GE Centricity and i2iTracks reporting system. As you follow along in the toolkit, please be aware that differences may exist in other EHR and reporting systems. Step 1: Identified Adolescent Transitions of Care* form with the clinical content development team (in our case, worked with the Alliance of Chicago to identify this form within the existing Electronic Health Record System). *This form was part of the September 2013 Clinical Content Updates If your EMR/EHR does not have an existing form, you may need to work with the clinical content experts to create a form/transition checklist. Step 2: Install the Adolescent Transitions of Care form in the appropriate encounter types at which you see adolescent patients (e.g. annual physicals)

At River Hills CHC: PEDS Chronic, PEDS Well-Child (+1 year) for Physicals

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Step 3: Develop a logical workflow within the Electronic Health Record. At River Hills CHC, a blue ‘jump’ button appears on the Initial Intake form, Care Management Plan form, and Pediatric and Adult CC/HPI form (common forms used when rooming patient).

A blue Jump Button will appear when the patient turns 11.5 years old. When providers click this button, it brings them directly to the Adolescent Transition of Care form.

At age 16, a ‘Transition of Care, Peds to Adult Care’ checkbox will appear. Providers should check this box once they initiate the transfer of care to an

Button appears between ages 11.5-23 years old

Checkbox appears between ages 16-23 years old

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adult provider. Providers can also save the Adolescent Transition of Care form in their Favorites section (bottom Left).

Step 4: Proceed to answer the age-appropriate questions within the Adolescent Transitions of Care form. Use this form as a guideline to help facilitate a conversation with the adolescent. It may be helpful to have handouts or educational materials during this discussion.

Select Yes or No. The form will automatically populate the date this was last done. You can only ask questions for the current age range of the patient. Additional comments can be added to the bottom of this form.

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Adolescent Transitions of Care Form Questions: (GE Centricity) Developed by the clinical content experts at Alliance of Chicago. Domain 1: Increasing Adolescent Responsibility for Healthcare Management Age 12-13 Years

• Met privately with the adolescent for part of the office visit. • Adolescent demonstrates understanding of his/her conditions and how to

take any prescribed medications. • Adolescent asks questions during each office visit and participates in the

care plan. Age 14-16 (continues on 17-19)

• Adolescent is competent in independently making appointments, filling prescriptions, following up on referrals, and seeking emergency services, as needed.

• Adolescent's parents were provided with the opportunity to discuss their feelings about loss of control, concerns about the future, and increasing the adolescent's independence.

• Discussed using technology to access health records and communicate with the adolescent's care team.

Domain 2: Readiness Assessment for Transfer to Adult Care Age 12-13 Years

• Initiated discussion about transfer to an adult healthcare provider. Provided copy of transition policy and letter.

Age 14-16 Years • Discussed choices for adult care and assisted in identifying possible care

providers. Age 17-19 Years

• Discussed plan for health insurance coverage in the future. • Encouraged to meet and interview adult providers. • Initiated communication with the adult provider that the family and

adolescent has selected. Domain 3: Implementation of Transfer to Adult Care Age 17-19 Years

• Transferred health records. • Discussed nuances of care with the adult provider. • Followed up after the transfer.

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Step 5: Save you responses and, once the clinic visit is complete, sign the note.

Answers to the form questions and any comments will be added directly to the patient’s visit summary.

Step 6: Each year, proceed through the age-appropriate questions in a manner that makes sense for the patient. For some patients, you may need to follow-up on a previously discussed question. For others, you may be able to get through all of the questions fairly quickly. Every adolescent has their own process of transitioning, but it is important each of these topics is covered by the time they are ready to transfer to an adult provider.

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Data Tracking and Reporting Once the new form (or other quality improvement efforts) is implemented, it is crucial that you establish a system to track and report your Community Health Centers progress with the initiative. The Agency for Healthcare Research and Quality (AHRQ) contains a wide-range of child health care quality metrics that you can use to assess your program’s success. Daily audits and reports are best at the beginning, followed by weekly and monthly reports once the initiative is well-established in the workflow of the clinic. Process vs. outcome evaluation: Examples of process measures (are providers following the workflow?)

• 15 staff received training on the new form. • The Adolescent Transition of Care form was opened 30 times in 2 weeks. • The Transition of Care, Peds to Adult checkbox was selected 8 times

today. Examples of outcome measures (is the new form improving transitions?)

• Completion rate of pediatric providers – ie. Number of times the provider opened and completed part of the new form/number of adolescent patient encounters during that time period

• Percentage of 12-13 year olds that initiated a conversation about transition.

• Number of 18 year olds with completed Adolescent Transition of Care forms in their Electronic Health Record.

• Percentage of adolescent patients with [chronic disease] that successfully transferred to an adult provider.

Running Reports in GE Centricity: Open new Inquiry. Find: Patients Where: Observation (any term) Select Basic folder Search for: Click Ok “Add” each separate search term to the “Find Patients where” list

Each obs term starting with ATC corresponds to one question in the Adolescent Transitions of Care form.

CARETRANSPAC corresponds to the Transition of Care, Peds to Adult Care checkbox.

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Report 1: Use this report to see if (1) the Adolescent Transition of Care form is being utilized by providers, (2) the questions are being answered (yes or no answer does not matter), and (3) to see how many patients have received some level of transition education. Open new Inquiry. Find: Patients Where: Observation (any term) Select Basic folder Search for: ATCIARASQPCP (last entry) Select “is not blank” Click “Combine With OR” Click “Add” Repeat for all 14 observation terms starting with ATC. Click Count to run report. The GE Centricity report output will look like this:

*Note: If you used any test patients, remember to remove them from your report!

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Report 2: Use this report to see how many patients successfully transferred out of pediatric care to an adult provider. This report will track how many patients had the Transition of Care, Peds to Adult checkbox checked by the provider. Open new Inquiry. Find: Patients Where: Observation (any term) Select Basic folder Search for: CARETRANSPAC (any entry) Select “contains” Enter “T” Click “Combine With AND” Click “Add” To select a certain age range: Add Patient Birthdate Birthdate before/after mm/dd/yyyy To select a certain time period: Appointment Date is on/after mm/dd/yyyy and Appointment Date is before mm/dd/yyyy Click Count to run report. GE Centricity report output:

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Using i2iTracks for Data Reporting: Webinar: Optimize the Use of i2iTracks NOTE: If don’t have i2i Custom Data Integrator, please ask the Iowa PCA to help run these reports for your organization. Step-by-step to create report: Custom Data Integrator (CDI) Step 1: Map the observation terms in i2i File >> Tools >> Custom Data Integrator List shows everything that has been put into the EHR system Search bar (top): Only show items that contain: type “transition” Click Enter Lists everything that has “transition” in EHR system

Red = not mapped (have not connected to report trying to run) Highlight any lines that are red Click Edit Mapping Click both “Yes” AND “No” Step 2: Create a unique report Patients >> Search for Patients Shows any past created reports Add Creates new report

Mapped from this place in EHR

Each corresponds with a different question in Transition form (obs term)

I2iTracks term Educations: Adolescent Transition of Care

# occurences = how many times question used

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Patient Search Properties (3 tabs): General Search Group – where you want the report to be filed (e.g. Rachel’s reports) If you leave as Default, any one with i2i can edit (if someone else needs to pull the same report, leave as Default) Search Name - Name your report Search Description – easy to understand so if someone else needs to use in the future, they will know what type of report this will run.

Filters Add >> Demographics >> Age >> OK Only choose patients who ‘meet’ Age between 11 and 23 year(s) Can also choose specific providers, etc. Add >> Profile Items >> Educations >> OK Meet, Received Click Add Click Adolescent Transitions of Care Select ‘Any period’ or choose specific time period range Add >> General >> Appointments Status: Completed Choose which appointment types would have this form (e.g. 30 min physical)

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Final Filters:

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Fields Click “Show the following fields in the search results” List whatever you want to see for the report (ID, Name, DOB, Age) Note: Provider, Date of Service (DOS) runs off billing system

Step 3: Run report Highlight saved report >> Click “Do Search” Your report will run (gears turning) Click “Report” button Save as Excel spreadsheet Name document (transition4.21.14) and put in drive on computer Can use Excel to make graphs

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Example Report Graphs:

Opportunities vs. completed form

Breakdown of age at which transition education occurred

Reporting screen shots and graphs courtesy of Holly Bain, Quality Assurance Manager, River Hills Community Health Center

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Case Studies & Pilot Projects

Many state Title V programs have incorporated transition information and resources on their website, while others have created a separate site or links to transition information. Most of these provide toolkits containing various guides and resources designed for youths, parents and caregivers, and medical providers. Florida FloridaHATS This site clearly states its mission, vision, and values in an easily-navigable design. It includes a directory for young adults, the latest news on transition, and a Transition Tool Box (that has education and training, health care provider information, and information on insurance). Health Care Transition Initiative (University of Florida)

• Online Planning Guides • Transition Readiness Assessment

Maryland Maryland Transitioning Youth This site clearly states its mission, vision, and values in an easily-navigable design. It focuses on the consumer, with links that include reference guides, locating physicians, and information on private insurance. It is a “one-stop” location for families of transitioning young adults. Transition Navigation Application and Genetic Counseling Curriculum (Shannon Dixon, University of Maryland) Montana MYTransitions Montana has this separate, one-stop site for transition, which conveniently contains different drop-down bars for parents, professionals, and the young adults. It also contains info on transition related to employment, housing, transportation, education, recreation, money, and health. New York Healthy Transitions This is a fun interactive website with lots of great tools and videos developed by the New York State Institute for Health Transition Training. The site includes MY PLACE, a social networking feature that links you to a personal transition team. North Carolina

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MAHEC CHAT Project As part of the Mountain Area Health Education Center, the site provides information and guides for the CHAT (Carolina Health and Transition) project. The page includes a Tool Kit (see Youth and Family Resources) and guides for parents, youths, and providers on transition. Washington Adolescent Health Transition Project Called the "Adolescent Health Transition Project,” Washington’s transition site includes information for young adults, providers, and parents, with medical summary information and adolescent autonomy checklists, to name a few resources. In addition, the site offers guides and information for education and employment. Wisconsin Health Transition Wisconsin Up to date information and resources geared towards youth and young adults who are preparing for transition to life as an adult. The youth and family page includes a number of videos under the heading, "This is Health Care Transition." Idaho Healthcare Transition Guides Other state transition resources: http://ncset.org/stateresources/resources.asp Other Promising Pilots Got Transition Learning Collaboratives: http://www.gottransition.org/learning-collaboratives-gt-learning-collaboratives

• Putting the Six Core Elements of Health Care Transition into Practice Using Quality Improvement: The Experience of Four Got Transition Learning Collaboratives

• Got Transition Radio and Youtube Channel National Center for Medical Home Implementation: Promising Transition Practices Transition Template Handouts (Texas Children’s Hospital, Department of Adolescent Medicine) Transition Coalition (University of Kansas)

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Provider Transition Training and Continuing Education

For providers looking to gain additional training and expertise in the area of adolescent transition, there are several opportunities online available – some even offer Continuing Medical Education credit! Health Care Transition Training Program (2 modules) – 2.0 AMA Physician Recognition Award Category 1 credits™ Health Care Transition for Adolescents and Young Adults - 1.0 AMA Physician Recognition Award Category 1 Credits™ Illinois Transition Care Project - The project offers two separate curricula.The pediatric course offers 15 CME PRA Category 1 Credits™ and 25 Maintenance of Certification Part IV points (approved by the American Board of Pediatrics). The adult medicine course offers 10 CME PRA Category 1 Credits™, 20 Maintenance of Certification Self-Evaluation credits (approved by the American Board of Internal Medicine) and 20 MC-FP Part IV points (approved by the American Board of Family Medicine). Register here. Online Graduate Certificate in Education and Health Care Transition Baylor College of Medicine Leadership Education in Adolescent Health (LEAH) Training Program, based at Texas Children’s Hospital, sponsors a two-day “Chronic Illness and Disability: Transition from Pediatric to Adult-based Care Conference.” Watch videos from the 2011 Conference here. A Health Care Provider’s Guide to Helping Youth Transition from Pediatric to Adult Health Care (Carolina Health and Transition Program) Transition to Adulthood guides (Ohio Center for Autism and Low Incidence) -assists individuals with Autism Spectrum Disorders and his or her team in reviewing the issues of adulthood related to employment, postsecondary education and adult living during these years. Provider Resources from the Center for Healthcare Transition Improvement For teachers: The University of Kansas Continuing Education and Department of Special Education have developed an award-winning series of online seminars focusing on critical issues facing young people as they transition from school to adult life - Each seminar is offered for 20 hours of continuing education credit.

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Youth & Family Resources Becoming an Adult: Taking Responsibility for Your Medical Care (YouTube) Got Transition? Resources:

• http://www.gottransition.org/youth-information • http://www.gottransition.org/youth-resources • http://www.gottransition.org/families-resources

Guidebooks:

• Developing the Skills for Growing Up • Transitions – Growing Up and Away • Transition Planning: A Guidebook for Young Adults and Family • Healthcare Transition Planning Guide for Youth and Families (ages 12-14) • A Youth Guide to Transition from Pediatric to Adult Health Care • Healthcare Transition: A Parent, Family, and Caregiver’s Guide • When You’re 18, You are in Charge of Your Health

Primary Care Doctors: Who’s Who? (KidsHealth) Self-Advocacy in the Doctor’s Office – It Could Save Your Life (blog) Giving Teens a Voice in Health Care Decisions (Nemours) Finding and Using an Adult Provider:

• Talking With Your Doctor and Other Health Care Providers (video) • Communicating With Doctors and Other Health Care Providers • Talking to Your Doctor (TeensHealth) • GLADD (Give, Listen, Ask, Decide, Do) approach to talking with health

care professionals • Tips for talking to your doctor or healthcare team

Healthcare Check Lists:

• Health Skills Checklists • Transition Healthcare Checklist: Preparing for Life as an Adult • My Health Pocket Guide

Healthcare Transition Resources for Patients and Families

• Youth Transition Products • Healthcare Transition Products

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Making and Organizing a Care Binder Kids As Self Advocates (KASA)

• Over 60 tipsheets and guides written for youth, by youth! • Health resources and stories from youth

Post-Secondary Education Resources

• College Transition Checklist Employment Resources

• Healthy and Ready to Work (HRTW) • HRTW: Tools and Solutions

Iowa Resources

• Iowa Transition Assessment (Iowa Department of Education) • I have a plan IOWA!

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Children and Youth with Disabilities and Special Health Care Needs Current Status of Transition Preparation Among Youth With Special Needs in the United States (2013) Youth with Special Health Care Needs: Transition to Adult Health Care Services (2012) Healthcare Transition:

• This is Healthcare Transition (4 part video series) • Being a Healthy Adult: How to Advocate for Your Health and Health Care

o Chapters (pdf) • Envisioning My Future: A Young Person’s Guide to Healthcare Transition • Transition Resources for Teens • Transition to Adult Health Care: A Training Guide in Two Parts • Linkages newsletter and resources (professionals and families)

Knowledge Path - caring for children and youth with special health care needs Transition Training: Youth with Developmental Disabilities (5 modules) National Youth Transition Initiative (HSC Foundation) Guardianship and Decision-Making Support

• Becoming an Adult: Legal and Financial Planning (video) • Guardianship and Alternatives for Decision-Making Support

Becoming an Adult: Deciding Where to Live Becoming an Adult: What Can I do After High School? Post-Secondary Education Resources:

• College Preparation for Students with Disabilities Handbook • Heading for College with Special Health Care Needs: Student Preparation

for a Successful Transition Employment:

• Healthy Transitions: A Pathway to Employment for Youth with Chronic Health Conditions and Other Disabilities

Iowa Resources for Children and Youth with Disabilities:

• Iowa Compass • Ask Resource

o Transition Site • Families of Iowa Network for Disabilities (FIND Families)

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Children and Youth with Chronic Conditions Transition for Youth With Chronic Conditions: Primary Care Physicians’ Approaches (2002) Implementing Transitions for Youth With Complex Chronic Conditions Using the Medical Home Model (2002) Transition From Pediatric to Adult Care: Internists' Perspectives (2009) Health Care Transition for Emerging Adults with Chronic Health Conditions and Disabilities (2012) Employment:

• Healthy Transitions: A Pathway to Employment for Youth with Chronic Health Conditions and Other Disabilities

HIV: Moving On Positively: A Guide for Youth, Caregivers, and Providers Transitioning HIV-Infected Youth Into Adult Health Care (2013) Cystic Fibrosis: Improving Transition From Pediatric to Adult Cystic Fibrosis Care: Lessons From a National Survey of Current Practices (2008) Health Outcomes Associated With Transition From Pediatric to Adult Cystic Fibrosis Care (2013) Diabetes/Metabolic Disorders: Boston Children’s Hospital Transition Toolkit (for children with metabolic conditions)

• Printable toolkits for specific metabolic conditions National Diabetes Education Program: Transition Planning

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Health Insurance Coverage for Youth How can health reform help young adults up to age 26? (video) Enrolling in the marketplace: Open enrollment information: https://www.healthcare.gov/what-key-dates-do-i-need-to-know/ Healthcare.gov contact information: https://www.healthcare.gov/ to apply online. Link to get phone information for the Marketplace and local help: https://www.healthcare.gov/contact-us/ DHS Contact Center: Consumers should call the DHS Contact Center at 1-855-889-7985, Monday- Friday, 7am-6pm. Brochure for health centers to give young patients focusing on the "culture of coverage." The brochure - "What Does it Mean to Have Health Insurance?" - is available in English and Spanish. You'll see that these are tailored for Community Health Care, Inc., but we can make the contact information general or specific to your health center. Other Helpful Resources for Youth:

• Young Invincibles • Healthy Young America

o Healthy Young America phone app • Young Adult Coverage & Staying on Parent's Insurance until 26 • Health Reform for Young Adults • A Young Adult's Guide to New Health Insurance Choices • Get Covered Guide: English and Spanish • Enroll America: Young Americans Toolkit

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Appendices Appendix 1: Healthcare Transition Planning Algorithm and Key

From Pediatrics (July 2011) joint clinical report authored by the American Academy of Pediatrics (AAP), the American Academy of Family Physicians (AAFP), and the American College of Physicians (ACP)

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Appendix 2: River Hills Community Health Center Nurse Training

Supporting the Transition from Pediatric to Adult Health Care

Click picture to view PowerPoint Presentation slides.

Appendix 3: River Hills Community Health Center Provider Focus Group

Supporting the Transition from Pediatric to Adult Health Care

Click picture to view PowerPoint Presentation slides.

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Appendix 4: Frequently Asked Questions for Parents/Caregivers Adapted from Legacy Community Health Services (FQHC) transition policy & procedure

From first steps to first days of school, at River Hills Community Health Center we understand that families go through many transitions as their children grow. We feel fortunate to have been part of your child’s life through some of these important transitions. As your child’s pediatric provider, one of the last and most important transitions that I can help guide you through is the transition from pediatric to adult medicine. Below are some frequently asked questions regarding the transition process. When does this transition happen? Pediatric patients at River Hills should transition to an adult model of care by their 22nd birthday. In order to prepare for this transition, we will start having these conversations around ages 12-13 years and develop a transition plan by ages 14-16 years. This plan will be updated annually as needed. What differences are there between the pediatric and the adult care models? Unlike the pediatric model of care where you (the parent) were the decision maker for your child, in the adult model of care the youth becomes an independent decision maker. This difference is based on the legal right for most people over the age of 18 to make medical decisions for themselves. It is important to note that this is true even if your child is still covered under your insurance policy. Does River Hills Community Health Center offer adult care? What if my child chooses an adult provider outside the River Hills system? River Hills offers full-scale adult medicine services to the Southeastern Iowa community, and we sincerely hope that your child will consider transitioning to one of our many remarkable adult providers at the downtown Ottumwa clinic, Richland clinic, or Centerville clinic. If, however, your child should choose to move to an outside provider, we will work hard to ensure a smooth and timely transition. What is my child’s role in the transition process? The youth’s role in the transition process is to maximize his or her independence through development of self-management skills and by taking on leadership in the decision-making process. What is my role as parent/guardian in the transition process? The parent or guardian’s role is to actively support the youth in the process, by moving in and out of decision-making, as appropriate. What is my pediatrician’s role in the transition process? The pediatric provider’s role is to facilitate the transition process in a manner that is well planned, clear and patient/family centered. What is the receiving adult provider’s role in the transition process? The receiving adult provider’s role is to provider support to the youth and his/her family throughout the process and to introduce the practices and policies of the adult practice. At your next visit, we’ll discuss in more detail what this transition will look like for your child and your family. In the meantime, feel free to contact the nursing staff at (641) 684-3000 with any questions of concerns.

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Appendix 5: Transition Policy Script for Nursing Staff (used to introduce topics to adolescents and parents)

Adapted from Got Transition Six Core Elements of Health Care Transition 2.0 – Transitioning Youth to an Adult Health Care Provider (sample transition policy)

River Hills Community Health Center is committed to helping our patients make a smooth transition from pediatric to adult health care. This process involves working with youth, beginning at ages 12 to 14, and their families to prepare for the gradual change from a “pediatric” model of care where parents make most decisions to an “adult” model of care where youth take full responsibility for decision-making. This means that we would like to spend some time during the visit with the teen without the parent present in order to assist them in setting health priorities and supporting them in becoming more independent with their own health care. At age 18, youth legally become adults. We respect that many of our young adult patients choose to continue to involve their families in health care decisions. Only with the young adult’s consent will we be able to discuss any personal health information with family members. If the youth has a condition that prevents him/her from making health care decisions, we encourage parents/caregivers to consider options for supported decision-making. We will collaborate with youth and families regarding the age for transferring to an adult provider and recommend that this transfer occur before age 22. We will assist with this transfer process, including helping to identify an adult provider, sending medical records, and communicating with the adult provider about the unique needs of our patients. As always, if you have any questions or concerns, please feel free to contact us.

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