www.hrtw.org

Patti Hackett, MEdCo-Director, HRTW National Resource

CenterBangor, ME

Future of Pediatrics Orlando, FL

June 30, 2007

Transition to Adulthood: Preparing for the Difference

for CYSHCN

www.hrtw.org

Disclosure

• Neither I nor any member of my 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.

• My content will not include discussion/reference of any commercial products or services.

• I do not intend to discuss an unapproved/investigative use of commercial products/devices.

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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.

www.hrtw.org

 

 

Title V Leadership

Toni Wall, MPA

Kathy Blomquist, RN, PhD

Theresa Glore, MPH

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

Ceci Shapland, RN, MSN

Trish Thomas

Mallory Cyr

HRSA/MCHB Project Officer

Elizabeth McGuire

HRTW TEAM

www.hrtw.org

Supporting Success: It Take ALL of US!

Youth

Family Friends PeersMentors/

Role Models

CommunityParticipation

SchoolAttendance

CareerDevelopment

Personal & CivicResponsibility

Self Sufficiency

Self Advocacy

Self-CareAccess to -

Appropriate use of Health Care

EmploymentI ndependent

Living

Wellness:Physical, Social,

Emotional

Other “Encouragers”

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Do you have “ICE” in your cell phone contact list?

• 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)

To Program……….

www.hrtw.org

Objectives

• Discuss what is most important to young people with SHCN for their transition to adulthood and the current realities for YSHCN

• Review the medical perspective and differences between pediatric and adult health care systems

• Learn what a health care professional can do to assist youth with transition

www.hrtw.org

Discussion

• What do you think YOUTH want to know about their health care/status?

• At what age should children start asking their own questions to their Doctor?

• At what age does your practice encourage assent signatures?

Not everything that can be counted counts,

and not everything that counts can be counted.Albert Einstein

What does

the Data

tell us?

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Youth With Disabilities Stated Needs for Success in Adulthood

PRIORITIES:

1 Career development (develop skills for a job and how to find

out about jobs they would enjoy)

2 Independent living skills

3 Finding quality medical care (paying for it; USA)

4 Legal rights

5 Protect themselves from crime (USA)

6 Obtain financing for school (USA)SOURCE: Point of Departure, a PACER Center publication Fall, 1996

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Survey - 1300 YOUTH with SHCN / disabilities

Main concerns for health:

– what to do in an emergency,

– 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

Youth are Talking: Health Concerns

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Youth are Talking: Are We Listening?

Experiences that were most important:

• learning to stay healthy

• getting health insurance

SOURCE: National Youth Leadership Network Survey-2001,

300 youth leaders disabilities

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Outcome Realities

• Nearly 40% cannot identify a primary care physician

• 20% consider their pediatric specialist to be their ‘regular’ physician

• Primary health concerns 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

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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

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Objectives

• Discuss what is most important to young people with SHCN for their transition to adulthood and the current realities for YSHCN

• Review the medical perspective and differences between pediatric and adult health care systems

• Learn what a health care professional can do to assist youth with transition

www.hrtw.org

Discussion

• When did you transition to adult care? How about your children?

• Briefly share your experience transitioning a patient to adult care?

• What skills do youth need before transitioning ?

• How do you support families in their transitioning roles?

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The Ultimate Outcome: Transition to Adulthood

Health Care Transition Requires Time & Skills

for children, youth, families and their Doctors too!

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What is Transition?

Components of successful transition

• Self-Determination• Person Centered Planning• Prep for Adult health care• Work /Independence

• Inclusion in community life • Start Early

Transition is the deliberate, coordinated provision of developmentally appropriate and culturally competent health assessments, counseling, and referrals.

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The Transition ProcessThe Transition Process

Referral & Transfer of Care

Pediatric Care Adult Care

Transition

SOURCE: Rosen DS. Grand Rounds: All Grown up and Nowhere to Go: Transition From Pediatric to Adult Health Care for Adolescents With Chronic

Conditions. Presented at: Children’s Hospital of Philadelphia; Philadelphia, PA, 2003

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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

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Shared Decision Making

Provider Parent Young Person

Major responsibility

Provides care Receives care

Support to parent and child

manages participates

consultant supervisor manager

resource consultant supervisor

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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 othersMay need support in some areas

Dependent ManagesCoordinates(expand circle of support)

Needs support full-time in all areas

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Informed Decision Makers

FERPA Family Education Rights & Privacy Act

HIPAA Health Insurance Portability and Accountability Act

1. Privacy Records 2. Consent Signature (signature stamp)

- Assent to Consent - Varying levels of support - Stand-by (health surrogate) - Guardianship (limited to full)

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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….

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Pediatric Adult

Age-related Growth& development, future focussed

Maintenance/decline:Optimize the present

Focus Family Individual

Approach PaternalisticProactive

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

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Transition to Adulthood

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Objectives

• Discuss what is most important to young people with SHCN for their transition to adulthood and the current realities for YSHCN

• Review the medical perspective and differences between pediatric and adult health care systems

• Learn what a health care professional can do to assist youth with transition

www.hrtw.org

Discussion

• Are you familiar with the Consensus Statement? The new Joint Principles?

• How do you teach children and youth about their wellness baseline?

• What 3 essential skills you can teach in the office encounter?

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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

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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

www.hrtw.org

2. Identify core knowledge and skills

Encounter checklists

Outcome lists

Teaching tools

6 Critical First Stepsto Ensuring Successful Transitioning

To Adult-Oriented Health Care

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Core Knowledge & Skills: POLICY

1. Dedicated staff position coordinates transition activities

2. Office forms are developed to support transition processes

3. CPT coding is used to maximize reimbursement for transition services

4. Legal health care decision making is discussed prior to youth turning 18

5. Prior to age 18, youth sign assent forms for treatments, whenever possible

6. Written transition policy states age youth should no longer see a pediatrician

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Core Knowledge & Skills: MEDICAL HOME

1. 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 family or internal medicine physicians

4. Practice provides support and confers with adult providers post transfer

5. Practice actively recruits adult primary care /specialty providers for referral

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Core Knowledge & Skills: FAMILY & YOUTH

1. Practice discusses transition after diagnosis, and planning with families/youth begins before age 10

2. Practice provides educational packet or handouts on 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)

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Core Knowledge & Skills: FAMILY & YOUTH

5. Practice assists youth/family in creating a portable medical summary

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

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Core Knowledge & Skills: HEALTH CARE INSURANCE

1. 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

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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.

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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

6 Critical First Steps

to Ensuring Successful Transitioning To Adult-Oriented Health Care

www.hrtw.org

Create Portable Medical Summary

- Use as a reference tool

- Accurate medical history & contact #s

- Carry in your wallet.

- Use for disability documentation

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Preparing for the 15 minute Doctor Visit

Know Your Health & Wellness Baseline

• How does your body feel on a good day?

• What is your typical body temperature,

respiration count, plus and elimination

habits?

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Survive & Thrive!

- Encourage questions at each visit.

- TOOL: 5 Q

- Assent: co-sign treatment plans.

- Youth calls for appointments and Rx refills

Concise Medical Reporting

- Give brief health status and overview of needs.

- Know the emergency plan when health changes.

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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

6 Critical First Steps

to Ensuring Successful Transitioning To Adult-Oriented Health Care

www.hrtw.org

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

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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

6 Critical First Stepsto Ensuring Successful Transitioning

To Adult-Oriented Health Care

www.hrtw.org

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

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Screen for All Health Needs

• Hygiene

• Nutrition (Stamina)

• Exercise

• Sexuality Issues

• Mental Health

• Routine (Immunizations, Blood-work, Vision, etc.)

• Secondary Conditions/Disabilities

• Accelerated Aging issues

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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

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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)

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Celebrate the Paperwork!

It Means You are Alive!

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

- Age 10 – call for appt & Rx refills

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Having a Voice: Children & Youth

- Start early: carry insurance card

- Present insurance card

- Prepare for Doc visit: 5 Qs

- Know wellness baseline

- Practice calling for Rx, appts

- Assess decision making, provide supports when needed. (ASSENT TO CONSENT)

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Families: Prepare for Changing Roles

• Temporary spokesperson on behalf of minor child (until age 18, or declared by the court)

- Plant the suggestion: Who is your patient, future appt alone with the patient AND offer ideas what do while family waits in the waiting room.

- 2 voices to be heard: families and CY

- ASSENT TO CONSENT

- New time/roles without guilt

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Providers: Prepare for Changing Roles

• Establish and post transition policy (gets everyone thinking ahead and not feeling ambushed)

- Plant the suggestion: Who is your patient, future appt alone with the patient AND offer ideas what do while family waits in the waiting room.

- Chronic health issues – CY need to be competent in their information and decision making. Ask before offering the answer.

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Transition & ……Sexuality

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The Concerns -- Teachers

What is my role? (legal too!)

Balance need to know

Balance cultural / religious beliefs

Open dialogue - respect and privacy

What to share or not with parents?

Where are the experts? Role models?

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Who Starts the Discussion?

1. Medical (Doc, Nurse, OT/PT)

2. Family (how early?)

3. Teachers

4. Community resources

Everyday messages:

TV, videos, Friends, Internet – family, community

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Family Roles

What pediatricians & teachers don’t know - don’t want to know

Discussion with primary care - referral

Medical Home www.medicalhomeinfo.com

(Sexuality as part of REAL comprehensive care plan)

Including in the IEPs, OT/PT plans

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Integrated Sexual Healthcare

Importance of sexuality in healthcare

Psychologist’s responsibility

Rehab team sharing responsibility

Patient’s ranking of sexuality as important

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Treatment Planning

Identifying problem

Sample definition of problem

- Integration into social community

- Expansion of strategies for sexual expression

- Erectile dysfunction

- Female arousal disorder

- Sexual dysfunction

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Treatment

Rehab Psychologist inquires about sexuality

Patient defines problem

Rehab Psychologist defines treatment problem to team

Team members decide who will be involved (OT, PT, Social Work, Recreation therapy)

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Family Roles

Changing role: Parent Personal Support

Honesty & Dignity (before puberty)

Pre-plan (smoothing out awkward moments)

When personal values differ

Terminal does not mean asexual

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Youth & Family Roles

Masturbation Time!

Supplies: Youth (directs) Parent (gathers)

Role Switch: parent personal support

Clean-up (no talking)

Role Switch: personal support parent

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Youth & Family Roles

Assess - The Plan, Supplies & Support

Revise supports - disease progression

Libido change: Rx Traditional - Alternative

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Resources

www.MyPleasure.com

www.Sexualhealth.com

The Ultimate Guide to Sex and Disability (Kaufman, Silverberg, & Odette, 2003)

Quality Mall – Person Centered services supporting people with developmental disabilities

http://www.qualitymall.org/directory/dept1.asp?deptid=16

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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.

1. Start early

2. Ask and reinforce life span skills prepare for the marathon

3. Assist youth to learn how to extend wellness

4. Reality check: Have all of us done the prep work for the send off before the hand off?

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What would

you do,

if you thought

you could not fail?

www.hrtw.org

Patti Hackett, MEdCo-Director, HRTW Center

Bangor, ME

pattihackett@hrtw.org