richard antonelli, md medical consultant ceci shapland, rn, msn hrtw family/youth consultant mallory...

Richard Antonelli, MDMedical Consultant

Ceci Shapland, RN, MSNHRTW Family/Youth Consultant

Mallory CyrHRTW Youth Coordinator

7th Annual Forum for Improving Children’s Healthcare

March 20, 2008

Healthy & Ready to Work, to Live and to Participate!

Title V Leadership

Toni Wall, MPA

Kathy Blomquist, RN, PhD

Theresa Glore, MS

Federal Policy

Patti Hackett, MEd

Tom Gloss

Interagency Partnerships

Debbie Gilmer, MEd

Medical Home & Transition

Richard Antonelli, MD, MS, FAAP

Patience H. White, MD, MA, FAAP

Betty Presler, ARNP, PhD

Family, Youth & Cultural Competence

Mallory Cyr

Ceci Shapland, MSN

Trish Thomas HRSA/MCHB Project Officer

Elizabeth McGuire

HRTW TEAM

www.hrtw.org

Disclosure

• Neither Dr. Antonelli, Ms. Cyr, nor Ms. Shapland, nor any members of our immediate families have 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.

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, families, youth 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.

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.

What is Health Care 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

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, families, youth 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 SHCN 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?

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 graduation 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

Survey Components Percentages

Percent of transitioned patients < 2% in 95% of practices

Transitioned pats. came with an introduction 75%75%

Transitioned patients know their meds 45%45%

Transitioned patients know their disease 30%30%

Transitioned patients ask questions 20%20%

Parents of transitioned patients ask questions 69%69%

Transitioned Adults believed they had a difficult transition

40%40%

Maria Ferris, MD, PhD, MPH, UNC Kidney Center

Internal Medicine Nephrologists (n=35)

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?

National Center of Medical Home Initiatives

Care that is:– Accessible– Family-centered– Comprehensive– Continuous– Coordinated– Compassionate– Culturally-effective

Elements of Medical Home and for which the primary care provider shares

responsibility with the family.

What is Medical Home Really?

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?

A sub-specialist can provide a Medical Home as long

as all elements of the care needs of the patient are

addressed.

Functional and Clinical Outcomes

Resources and Policies

Community

Care Model for Child Health in a Medical Home

Adapted from Wagner, et al

Health System

Health Care Organization (Medical Home)

Delivery

SystemDesign

Decision

Support

ClinicalInformatio

nSystems

Care Partnership

Support

Informed,ActivatedPatient/Family

Prepared,ProactivePractice Team

Family -centered

Coordinated and EquitableTimely & efficient

Evidence-based & safe

Supportive, Integrated Community

Prepared,ProactivePractice Team

Provider Parent Young Person

Major responsibility Provides care Receives care

Support to parent and child

Manages Participates

Consultant Supervisor Manager

Resource Consultant Supervisor

Shared Decision Making

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 world

…..that often do not communicate….

Pediatric Adult

Age-relatedGrowth& development, future focussed

Maintenance/decline:Optimize the present

Focus Family Individual

ApproachPaternalisticProactive

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 consensus 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

6 Critical First Stepsto Ensuring Successful Transitioning

To Adult-Oriented Health Care

1. Identify primary care provider

• Peds to adult

• Specialty providers

• Other providers

Pediatrics 2002:110 (suppl) 1304-1306

6 Critical First Stepsto 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

• Practice creates an individualized health transition plan before age 14

• Practice refers youth to specific primary care physicians

• Practice provides support and confers with adult providers post transfer

• Practice actively recruits adult primary care /specialty providers for referral

Core Knowledge & Skills: FAMILY & YOUTH

• Practice discusses transition after diagnosis, and planning with families/youth begins early (ped practice) or when youth are transferred to the practice (adult practice)

• Practice provides educational packet or handouts on expectations and information about transition

• Youth participate in shared care management and self care (call for appt/ Rx refills)

• Practice assists families/youth to develop an emergency plan (health crisis and weather or other environmental disasters)

Core Knowledge & Skills: FAMILY & YOUTH

• Practice assists with planning for school and/or work accommodations

• Practice assists with medical documentation for program eligibility (SSI, VR, College)

• Practice refers family/youth to resources that support skill-building: mentoring, camps, recreation, activities of daily living, volunteer/ paid work experiences

• Practice invites youth to be QI partner

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

6 Critical First Stepsto Ensuring Successful Transitioning

To Adult-Oriented Health Care3. 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

6 Critical First Stepsto Ensuring Successful Transitioning

To Adult-Oriented Health Care4. 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

6 Critical First Stepsto Ensuring Successful Transitioning

To Adult-Oriented Health Care5. Apply preventive screening guidelines

• Stay healthy

• Prevent secondary disabilities

• Catch problems early

Pediatrics 2002:110 (suppl) 1304-1306

Core Knowledge & Skills: SCREENING

• Exams include routine screening for risk taking and prevention of secondary disabilities

• Practice teaches youth lifelong preventive care, how to identify health baseline and report problems early; youth know wellness routines, diet/exercise, etc.

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 Critical First Stepsto 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

• 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

Transition to Adulthood

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, families, youth 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.

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 With Disabilities: Stated Needs for Success in Adulthood

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

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

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.”

SOURCE: Ansell BM & Chamberlain MA. Clinical Rheum. 1998; 12:363-374

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?

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)

Levels of Support

Levels of Support Family Role Young Person

Independent Coach

Can do or can direct others

Interdependent ConsultantCoordinates

Can do or can direct others

May need support in some areas

Dependent ManagesCoordinates

expand circle of support

Needs support full-time -all areasexpand circle of support

ASSENT to CONSENT

Eastern Maine Medical Center

• A parent or guardian is generally required to sign for a patient under the age of 18. Patients aged 14-17 should also sign. See IDD 20.041.

• If an adult is unable to make or communicate medical decisions, then the following may sign in the priority given: agent under healthcare power of attorney, guardian, spouse, domestic partner, next-of-kin. See IDD 20.060 Indicate capacity of representative.

Handout: Portable Medical SummaryCarry in your wallet

Good Days

• Cheat Sheet: Use as a reference tool

• Accurate medical history

• Correct contact #s

• Document disability

Health Crisis

• Expedite EMS transport & ER/ED care

• Paper talks when you can not

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.

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)

Skills for

Children & Youth

What to do

By Age 10

Before Age 18

• CHORES: Are you doing chores?

• ATTENDANCE: How are you doing in school?

• PLANNING: How are you doing with your plan?

• PARTICIPATION: What do you do when you are not in school?

• CAREER: What kind of work do you want?

• STAY WELL: Are you taking care of your health?

Skills Before 10 Before 18

• Carry and present insurance card X

• Know wellness baseline, Dx, Meds X X

• Make own Doctor appts X

• Call in Rx X

• Learning Choice X

• Decision making (assent to consent) X

• Prepare for Doc visit: 5 Qs X X

• Present Co-pay X X

• Assess: Insurance, SSI, VR X

• Gather disability documentation X

Transition & ……Family

Prepare for Changing Roles: Families & Youth

• Temporary spokesperson on behalf of minor child

• Until age 18, or declared by the court

• 2 voices to be heard: families and CY

• Opportunities: TRY, fail, relearn, try again

• Attain Skills = Practice

Survey of Family to Family Health Information Centers

• Key Points

• Identified fragmentation of system-100%

• Biggest need: linkages to community

resources

• Resource for healthcare facilities and

providers

Changing Roles

• Checklist-tool

• Assess skills

• Identify supports

• Guardianship/Conservatorship

Transition and the Youth with Development Disabilities

• Level of participation

• Supports

• Health advocate

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!!!!!

• 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 send off before the hand off?

Transition is complete when:

• Youth has health care that is paid for

• Care that is developmentally appropriate

• Able to self manage or support is identified

• Able to make health care decisions or support is in place

• Youth Leaders are partners in policy review and development

Effects of a well planned transition:

• Improved disease control

• Vocational readiness

• Quality life

What would

you do,

if you

thought

you could

not fail?

Resources

HEALTHY & READY TO WORK www.hrtw.org

• HRTW Portable Medical Summary - One page summary of health needs that youth or others can carry. Information contains medical history, current medication, name of health surrogate, health insurance numbers, contact information for treating doctors, pharmacy, home health and other vendors.

• Understanding Health Insurance - Web links to Choosing a Plan, Paying for Care, Public Insurance, Private Insurance, Policy / Advocacy Centers and Insurance Regulations, Laws and Statutes.

• Decisions & Making Choices - Web section contains information of Informed Decision Making, Assent-Consent, Guardianship, Living Wills and Advance Directives.

Resources

HRTW Portal - Laws that Affect CYSHCN http://www.hrtw.org/tools/laws_leg.html

• The Term Special Health Care Needs or Disability

• Disability Rights Portals

• Education Issues

• Employment & Disability

• Equal Opportunity Access (504, 508 & ADA)

• Family Medical Leave Act

• HRSA/MCHB – Title V Legislation

• Health Insurance Benefits

• SSI/SSDI

ADOLESCENT HEALTH TRANSITION PROJECT Washington

http://depts.washington.edu/healthtr/index.html

• Transition Timeline for Children and Adolescents with Special Health Care Needs. Transitions involve changes: adding new expectations, responsibilities, or resources, and letting go of others. The Timeline for Children may help you

think about the future.

• Working Together for Successful Transition: Washington State Adolescent Transition Resource Notebook - Great example to replicate.

• Adolescent Autonomy Checklists

Resources

Resources

• HEALTH AND HEALTHCARE IN SCHOOLS http://www.healthinschools.org/ejournal/2003/privacy.htm

• The Impact of FERPA and HIPAA on Privacy Protections for Health Information at School. Sampling of the questions from school nurses and teachers.

• NICHCY - National Dissemination Center for Children with Disabilities www.nichcy.org

• Materials for families and providers on: IDEA, Related Services and education issues – in English/Spanish

• Section 504 http://www.ed.gov/about/offices/list/ocr/504faq.html

GOT DATA!

www.cshcndata.org

www.familyvoices.org

www11.georgetown.edu/research/gucchd/nccc

www.hdwg.org/catalyst/index.php

State-at-a-GlanceChartbook onCoverage and Financingof Care for Children andYouth with Special Needs

Medicalhomeinfo.org

http://www.championsinc.org