Health Care Transition Preparing for the Difference: Transitioning Youth with Special Health Care Needs from Pediatrics to Adult Health Care Patience H. White, MD, MA, FAAP Patti Hackett, MEd American Academy of Pediatrics 2007 National Conference & Exhibition October 2007

Disclosure Neither Dr. White or Ms. Hackett nor any members of our immediate family has a financial relationship or interest with any proprietary entity producing health care goods or services related to the content of this CME activity. Our content will not include discussion/ reference of any commercial products or services. We do not intend to discuss an unapproved/ investigative use of commercial products/devices.

www.hrtw.org

HRTW TEAM Medical Home & Transition Title V Leadership Richard Antonelli, MD, MS, FAAP Patience H. White, MD, MA, FAAP Betty Presler, ARNP, PhD Title V Leadership Toni Wall, MPA Kathy Blomquist, RN, PhD Theresa Glore, MS   Family, Youth & Cultural Competence Mallory Cyr Ceci Shapland, MSN Trish Thomas Federal Policy Patti Hackett, MEd Tom Gloss   Interagency Partnerships Debbie Gilmer, MEd HRSA/MCHB Project Officer Elizabeth McGuire

What age would people say would be the best years of their lives beginning at age 10 in 5 year blocks?

Don’t Want to Grow Up: age adults say they want to remain (USA Today Poll 2000) Age (yrs) Men (%) Women (%) 5-10 8 11-14 4 6 15-20 34 20 21-25 29 28 26-30 10 31-35 7 36-40 3 41 and up 9 6

Health Impacts All Aspects of Life Success in the classroom, within the community, and on the job requires that young people are healthy. To stay healthy, young people need an understanding of their health and to participate in their health care decisions.

Objectives List the key elements of the national academies’ (AMA, AAFP, ABIM) perspective on adolescence and transition to adult healthcare Define the role of physicians and other care providers/coordinators in the transition of youth from pediatric to adult medical care. Define appropriate use of transition tools from the HRTW website and other national resources.

Think about Who is caring for youth with CTD between ages 15-25? What do you think YOUTH want to know about their health care/status? At what age should children/youth start asking their own questions to their Doctor? At what age does your practice encourage assent signatures?

What does the Data tell us? Not everything that can be counted counts, and not everything that counts can be counted. Albert Einstein

Youth With Disabilities Stated Needs for Success in Adulthood PRIORITIES: Career development (develop skills for a job and how to find out about jobs they would enjoy) Independent living skills Finding quality medical care (paying for it; USA) Legal rights Protect themselves from crime (USA) Obtain financing for school (USA) SOURCE: Point of Departure, a PACER Center publication Fall, 1996

Youth are Talking: Are we listening? Survey - 1300 YOUTH with SHCN / disabilities Main concerns for health: What to do in an emergency, Learning to stay healthy* How to get health insurance*, What could happen if condition gets worse. SOURCE: Joint survey - Minnesota Title V CSHCN Program and the PACER Center, 1995 *SOURCE: National Youth Leadership Network Survey-2001 300 youth leaders disabilities

a group of “successful” adults with disabilities What would you think a group of “successful” adults with disabilities would say is the most important factor that assisted them in being successful?

Self-perception as not “handicapped” Involvement with household chores FACTORS ASSOCIATED WITH RESILIENCE for youth with disabilities: Which is MOST important? Self-perception as not “handicapped” Involvement with household chores Having a network of friends Having non-disabled and disabled friends Family and peer support Parental support w/out over protectiveness Source: Weiner, 1992

Self-perception as not “handicapped” Involvement with household chores FACTORS ASSOCIATED WITH RESILIENCE for youth with disabilities: Which is MOST important? Self-perception as not “handicapped” Involvement with household chores Having a network of friends Having non-disabled and disabled friends Family and peer support Parental support w/out over protectiveness Source: Weiner, 1992

Outcome Realities Nearly 40% cannot identify a primary care physician 20% consider their pediatric specialist to be their ‘regular’ physician Primary health concerns that are not being met Fewer work opportunities, lower high school grad rates and high drop out from college YSHCN are 3 X more likely to live on income < $15,000 CHOICES Survey, 1997; NOD/Harris Poll, 2000; KY TEACH, 2002

Internal Medicine Nephrologists (n=35) Survey Components Percentages Percent of transitioned patients < 2% in 95% of practices Transitioned pats. came with an introduction 75% Transitioned patients know their meds 45% Transitioned patients know their disease 30% Transitioned patients ask questions 20% Parents of transitioned patients ask questions 69% Transitioned Adults believed they had a difficult transition 40% Maria Ferris, MD, PhD, MPH, UNC Kidney Center

A Consensus Statement on Health Care Transitions for Young Adults With Special Health Care Needs American Academy of Pediatrics American Academy of Family Physicians American College of Physicians - American Society of Internal Medicine Pediatrics 2002:110 (suppl) 1304-1306

Identify primary care provider Peds to adult Specialty providers 6 Critical First Steps to Ensuring Successful Transitioning To Adult-Oriented Health Care Identify primary care provider Peds to adult Specialty providers Other providers Pediatrics 2002:110 (suppl) 1304-1306

2. Identify core knowledge and skills Encounter checklists 6 Critical First Steps to Ensuring Successful Transitioning To Adult-Oriented Health Care 2. Identify core knowledge and skills Encounter checklists Outcome lists Teaching tools

Knowledge of condition, prioritize health issues 6 Critical First Steps to Ensuring Successful Transitioning To Adult-Oriented Health Care 3. Maintain an up-to-date medical summary that is portable and accessible Knowledge of condition, prioritize health issues Communication / learning / culture Medications and equipment Provider contact information Emergency planning Insurance information, health surrogate Pediatrics 2002:110 (suppl) 1304-1306

Expecting, anticipating and planning Experiences and exposures 6 Critical First Steps to Ensuring Successful Transitioning To Adult-Oriented Health Care 4. Create a written health care transition plan by age 14: what services, who provides, how financed Expecting, anticipating and planning Experiences and exposures Skills: practice, practice, practice Collaboration with schools and community resources Pediatrics 2002:110 (suppl) 1304-1306

5. Apply preventive screening guidelines Stay healthy 6 Critical First Steps to Ensuring Successful Transitioning To Adult-Oriented Health Care 5. Apply preventive screening guidelines Stay healthy Prevent secondary disabilities Catch problems early 6. Ensure affordable, continuous health insurance coverage Payment for services Learn responsible use of resources Pediatrics 2002:110 (suppl) 1304-1306

SOURCE: Crossing the Quality Chasm 2001 IOM QUALITY MEASURES The Health care system should be: Safe Effective Patient centered Timely Efficient Equitable SOURCE: Crossing the Quality Chasm 2001

Health Care Processes Should Have: Care based on continuing healing relationships Customization based on patient needs and values Patient as source of control Shared knowledge and free flow of information Safety Transparency Anticipation of needs SOURCE: Crossing the Quality Chasm 2001

How Do We Achieve That Type of System?

Elements of Medical Home National Center of Medical Home Initiatives Elements of Medical Home Care that is: Accessible Family-centered Comprehensive Continuous Coordinated Compassionate Culturally-effective and for which the primary care provider shares responsibility with the family.

What is Medical Home Really? -01 A Medical Home is a community-based, primary care setting that integrates high quality, evidence-based standards in providing and coordinating family-centered health promotion as well as acute and chronic condition management.

What is Medical Home Really? -02 A subspecialist can provide a Medical Home as long as all elements of the care needs of the patient are addressed.

Objectives List the key elements of the national academies’ (AMA, AAFP, ABIM) perspective on adolescence and transition to adult healthcare Define the role of physicians and other care providers/coordinators in the transition of youth from pediatric to adult medical care. Define appropriate use of transition tools from the HRTW website and other national resources.

Think About What is transition for youth with SHCN? When did you transition to adult care? How about your children? What skills do youth need before transitioning ? How do you support families in their transitioning roles?

What is Transition? Transition is the deliberate, coordinated provision of developmentally appropriate and culturally competent health assessments, counseling, and referrals. Components of successful transition Self-Determination Person Centered Planning Prep for Adult health care Work /Independence Inclusion in community life Start Early

Health & Wellness: Being Informed “The physician’s prime responsibility is the medical management of the young person’s disease, but the outcome of this medical intervention is irrelevant unless the young person acquires the required skills to manage the disease and his/her life.” Ansell BM & Chamberlain MA. Clinical Rheum. 1998; 12:363-374

Time Jan 2004

Societal Context for Youth without Diagnoses in Transition Parents are more involved - dependency “Helicopter Parents” Twixters = 18-29 - live with their parents / not independent - cultural shift in Western households - when members of the nuclear family become adults, are expected to become independent How they describe themselves (ages 18-29) 61% an adult 29% entering adulthood 10% not there yet (Time Poll, 2004)

Shared Decision Making Sking Provider Parent Young Person Major responsibility Provides care Receives care Support to parent and child Manages Participates Consultant Supervisor Manager Resource

Prepare for the Realities of Health Care Services Difference in System Practices Pediatric Services: Family Driven Adult Services: Consumer Driven The youth and family finds themselves between two medical worlds …….that often do not communicate….

Pediatric Adult Age-related Growth& development, future focussed Maintenance/decline: Optimize the present Focus Family Individual Approach Paternalistic Proactive Collaborative, Reactive Shared decision-making With parent With patient Services Entitlement Qualify/eligibility Non-adherence >Assistance > tolerance Procedural Pain Lower threshold of active input Higher threshold for active input Tolerance of immaturity Higher Lower Coordination with federal systems Greater interface with education Greater interface with employment Care provision Interdisciplinary Multidisciplinary # of patients Fewer Greater

Think About Are you familiar with the ACP?AAP/AAFP/Consensus Statement? How do you teach children and youth about their wellness baseline? What 3 essential skills you can teach in the office encounter?

A Consensus Statement on Health Care Transitions for Young Adults With Special Health Care Needs American Academy of Pediatrics American Academy of Family Physicians American College of Physicians - American Society of Internal Medicine Pediatrics 2002:110 (suppl) 1304-1306

Survey of Pediatric Practices on Transition Policies for YSHCN A pilot survey based on the policy recommendations of the concensus statement transition statement was completed in 2005 by 100% of 21 practices (146 physicians and 36 nurse practitioners) in Central Pennsylvania. The practices had volunteered to participate in developing a comprehensive family centered model of care.

Results of Pediatric Practice Survey 38% had a stated policy in their practice for when a YSHCN should transfer to an adult physician 0% had policy posted for families to see 66% had identified adult practices for referral. 19% had a policy to discuss legal issues for adulthood before age 18. 33% had identified a transition coordinator in the office 29% had care plans for YSHCN supporting transition process Source: White PAS 2006

Results of Pediatric Practice Survey 4% (one practice) used an individualized medical transition plan 29% had a plan - transportable medical record 62% rated their practice as not having a transition process but were interested in developing one 52% wanted assistance in developing forms/procedures 71% wanted assistance in coding for transition. Source: White, PAS 2006

Identify primary care provider Peds to adult Specialty providers 6 Critical First Steps to Ensuring Successful Transitioning To Adult-Oriented Health Care Identify primary care provider Peds to adult Specialty providers Other providers Pediatrics 2002:110 (suppl) 1304-1306

6 Critical First Steps to Ensuring Successful Transitioning To Adult-Oriented Health Care 2. Identify core knowledge and skills Encounter checklists Outcome lists Teaching tools

Core Knowledge & Skills: POLICY Identified staff person coordinates transition activities Office forms are developed to support transition processes CPT coding is used to maximize reimbursement for transition services Legal health care decision making is discussed prior to youth turning 18 Prior to age 18, youth sign assent forms for treatments, whenever possible Written transition policy states expected age youth should no longer see a pediatric HCP and /or when youth expected to see HCP alone

Core Knowledge & Skills: MEDICAL HOME Practice provides care coordination for youth with complex conditions 2. Practice creates an individualized health transition plan before age 14 3. Practice refers youth to specific primary care physicians 4. Practice provides support and confers with adult providers post transfer 5. Practice actively recruits adult primary care /specialty providers for referral

Core Knowledge & Skills: FAMILY & YOUTH 1. Practice discusses transition after diagnosis, and planning with families/youth begins before age 10 (ped practice) or when youth are transferred to the practice (adult practice) 2. Practice provides educational packet or handouts on expectations and information about transition 3. Youth participate in shared care management and self care (call for appt/ Rx refills) 4. Practice assists families/youth to develop an emergency plan (health crisis and weather or other environmental disasters)

Do you have “ICE” in your cell phone contact list? To Program………. Create new contact Space or Underscore ____ (this bumps listing to the top) Type “ICE – 01” – Add Name of Person - include all ph #s - Note your allergies You can have up to 3 ICE contacts (per EMS)

Core Knowledge & Skills: FAMILY & YOUTH 6. Practice assists with planning for school and/or work accommodations 7. Practice assists with medical documentation for program eligibility (SSI, VR, College) 8. Practice refers family/youth to resources that support skill-building: mentoring, camps, recreation, activities of daily living, volunteer/ paid work experiences

AERC Research: Youth are less interested in any transition organized around medical issues and more interested in a transition to financial and social independence.

AERC Context: Data on Adolescent Work in the USA Employers rank prior work experience, attitude and communication skills most important in hiring decisions (NYT, 1998) Work patterns of teenagers during the school year: - 40% 7th and 8th graders (JAMA 1998) - 80% high school students (IOM 1998) Educational level attained relates to survival, future income level and probability of labor force participation (Yeltin 1996)

AERC Context: Data on Adolescent Work in the USA Teens take health risks less if work under 20 hrs/week (JAMA, 1998) Part-time work data: - essential to future work success(Skurikor 1993) - most jobs low skill, low pay (US Dept. of Labor) - debate focus on hours worked, not skills attained (Mortimer 1994) - lack of connection to vocational development (Skorikov 1997) Minority, poor and disabled youth have less work experience but when work, same hours and wages attained

AERC RESULTS After 1 Yr in the AERC, active* 13 yr olds: More engaged (three times as many 13 year olds wanted to join AERC program than other ages) had less differences in measurements compared to age mates w/o disabilities; gap between norms and participants increased with age of participants made significant improvement compared to other ages in the intermediate outcome measures: ACLSA Life Skills, CMI, and Pediatric QoL

- more paid work experience AERC RESULTS After 3 years in AERC, receiving AERC services participants have: - more education - more paid work experience - more likely to leave SSI (3 are off SSI, 3 on their way) - Improved health from youth’s point of view - more likely to have an adult primary care physician ROI of program: 1 youth leaving the SSI rolls pays for 1 Year of the program!

Core Knowledge & Skills: FAMILY & YOUTH 6. Practice assists with planning for school and/or work accommodations 7. Practice assists with medical documentation for program eligibility (SSI, VR, College) 8. Practice refers family/youth to resources that support skill-building: mentoring, camps, recreation, activities of daily living, volunteer/ paid work experiences

Post-secondary: Medical Issues Selection of school: Career training with support services and scholarships. Medical supports needed at school, nearby campus, and plans for emergency and inpatient events. Insurance Coverage (is it adequate and is it one plan or a patch of plans) Modifications: Work Load, Medical Care, and Proactive Wellness Visit the DSS at the start of school

Knowledge of condition, prioritize health issues 6 Critical First Steps to Ensuring Successful Transitioning To Adult-Oriented Health Care 3. Maintain an up-to-date medical summary that is portable and accessible Knowledge of condition, prioritize health issues Communication / learning / culture Medications and equipment Provider contact information Emergency planning Insurance information, health surrogate Pediatrics 2002:110 (suppl) 1304-1306

Create Portable Medical Summary Use as a reference tool - Accurate medical history & contact #s - Carry in your wallet. Use for disability documentation

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.

Expecting, anticipating and planning Experiences and exposures 6 Critical First Steps to Ensuring Successful Transitioning To Adult-Oriented Health Care 4. Create a written health care transition plan by age 14: what services, who provides, how financed Expecting, anticipating and planning Experiences and exposures Skills: practice, practice, practice Collaboration with schools (add health skills to IEP) and community resources Pediatrics 2002:110 (suppl) 1304-1306

Collaboration with Community Partners Special Education Co-ops Higher Education Vocational Rehabilitation/ Workforce Development Centers for Independent Living Housing, Transportation, Personal Assistance, and Recreation Mental health Grant projects in your state

5. Apply preventive screening guidelines 6 Critical First Steps to Ensuring Successful Transitioning To Adult-Oriented Health Care 5. Apply preventive screening guidelines Stay healthy Prevent secondary disabilities Catch problems early Source: Pediatrics 2002:110 (suppl) 1304-1306

Core Knowledge & Skills: SCREENING 1. Exams include routine screening for risk taking and prevention of secondary disabilities 2. Practice teaches youth lifelong preventive care, how to identify health baseline and report problems early; youth know wellness routines, diet/exercise, etc.

- New disability issues & adjustments Health & …. Life-Span Secondary Disabilities - Prevention/Monitor - Mental Health, High Risk Behaviors Aging & Deterioration Info long-term effects (wear & tear; Rx, health cx) - New disability issues & adjustments

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

6. Ensure affordable, continuous health insurance coverage 6 Critical First Steps to Ensuring Successful Transitioning To Adult-Oriented Health Care 6. Ensure affordable, continuous health insurance coverage Payment for services Learn responsible use of resources Pediatrics 2002:110 (suppl) 1304-1306

Core Knowledge & Skills: HEALTH CARE INSURANCE Practice is knowledgeable about state mandated and other insurance benefits for youth after age 18 2. Practice provides medical documentation when needed to maintain benefits

Transition & ……Insurance NO HEALTH INSURANCE 40% college graduates (first year after grad) 1/2 of HS grads who don’t go to college 40% age 19–29, uninsured during the year 2x rate for adults ages 30-64 SOURCE: Commonwealth Fund 2003

Extended Coverage – Family Plan Adult Disabled Dependent Care Incapable of self-sustaining employment by reason of mental or physical handicap, as certified by the child's physician on a form provided by the insurer, hospital or medical service corporation or health care center Adult, childless continued on Family Plan Increasing age limit to 25-30 CO, CT, DE, ID, IN, IL, ME, MD, MA, MI, MT, NH, NJ, NM, OR, PA, RI, SD, TX, VT, VA, WA, WV

Having a Voice: Children and Youth Partners in Care Age 10 on – plan /practice calling for appt & Rx refills Know wellness baseline Assess decision-making, provide supports when needed. Assent to Consent

Having a Voice: Children and Youth Partners in Paying INSURANCE CARD: Carry & Present Fill in insurance forms ahead of visit Learn about coverage and coding Child/Youth give the co-pay

9 Easy steps to Plan a Successful Transition EXPECTATIONS: What do you want to do when you are older? Next year? Five years? TEACH: What can you tell me about your medical issues? Do they affect you from doing what you want in the day? OPINION: What do you think of the…? Be open and honest.. listen and be “askable”… Involve in decision making (assent to consent, give them a sense of competence)

9 Easy steps to Plan a Successful Transition (2) CHORES: Are you doing chores? ATTENDANCE: How are you doing in school? PLANNING: How are you doing with your transition plan?

9 Easy steps to Plan a Successful Transition (3) PARTICIPATION: What do you doing when you are not in school? CAREER: What kind of work/career do you want to do? STAY WELL: Are you taking care of your health? (HEADS)

Bottom line: 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 Ask and reinforce life span skills prepare for the marathon (post your practice transition policies, help families to understand their changing role) Assist youth to learn how to extend wellness Reality check: Have all of us done the prep work for the send off before the hand off?

Objectives List the key elements of the national academies’ (AMA, AAFP, ABIM) perspective on adolescence and transition to adult healthcare Define the role of physicians and other care providers/coordinators in the transition of youth from pediatric to adult medical care. Define appropriate use of transition tools from the HRTW website and other national resources.

What would you do, if you thought you could not fail?

Patience H. White, MD, MA, FAAP Medical Advisor- HRTW Center Chief Pubic Health Officer Arthritis Foundation Washington, DC pwhite@arthritis.org Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME pattihackett@hrtw.org

www.hrtw.org

www.hdwg.org/catalyst/index.php State-at-a-Glance Chartbook on Coverage and Financing of Care for Children and Youth with Special Needs

Medicalhomeinfo.org

www11.georgetown.edu/research/gucchd/nccc

www.familyvoices.org