Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME Ceci Shapland, RN, MSN HRTW Family/ Youth...

www.hrtw.org

Patti Hackett, MEdCo-Director, HRTW Center

Bangor, ME

Ceci Shapland, RN, MSNHRTW Family/ Youth Consultant

St. Paul, MNPartners in Policymaking

Harrisburg, PA

March 30, 2007

Growing Up Ready to Enjoy Adulthood:What’s Health Got to Do with It???

www.hrtw.org

www.hrtw.org

www.hrtw.org

Everything!

What Does Health Got to Do with Transition to Adulthood?

www.hrtw.org

Growing Up Ready to LIVE!

Health & Wellness + Humor

www.hrtw.org

www.hrtw.org

The Ultimate Outcome: Transition to Adulthood

Health Care Transition Requires

Time & Skills for children,

youth, families and

their Doctors too!

www.hrtw.org

Federal Mandates

The President’s New Freedom

Initiative (2001)

Responsibility given to HRSA for developing and implementing a community-based service system

www.hrtw.org

Federal Mandates – Health Connection

The President’s New Freedom Initiative HRSA/MCHB: develop and implement a

community-based service system 1. Comprehensive, family-centered care 2. Affordable insurance 3. Early and continuous screening for SHCN 4. Transition services to adulthood 4. Transition services to adulthood (Health)(Health)

www.hrtw.org

State Title V CSHCN Block Grant

National Performance Measures

To help states develop effective mechanisms to achieve a system of care for all children with special health needs and their families by 2010, six national performance measures (NPM) will serve as a guide to states in meeting this goal.

SOURCE: BLOCK GRANT GUIDANCE

New Performance Measures See p.43

ftp://ftp.hrsa.gov/mchb/blockgrant/bgguideforms.pdf

www.hrtw.org

CORE National Performance Measures 1. Screening 2. Family 3. Medical Home 4. Health Insurance 5. Community Services 6. Transition



www.hrtw.org

HRSA/MCHB Block Grant: NPM #6

Transition to Adulthood

Youth with special health care needs

will receive the services necessary to

make transitions to all aspects of

adult life, including adult health care,

work, and independence. (2002)


New Performance Measures See p.43


www.hrtw.org

Surgeon General’s Call for Action Improve the Health and Wellness of Persons with Disabilities 2005

1. People nationwide understand that persons with disabilities can lead long, healthy, productive lives,

2. Health care providers have the knowledge and tools to screen, diagnose and treat the whole person with a disability with dignity

www.hrtw.org

Surgeon General’s Call for Action Improve the Health and Wellness of Persons with Disabilities 2005

3. Persons with disabilities can promote their own good health by developing and maintaining healthy lifestyles

4. Accessible health care and support services promote independence for persons with disabilities.

www.hrtw.org

Health Affects Everything!!

• Employment

• Housing

• School

• Community Living

• Recreation

www.hrtw.org

Goal of Transition

Improve the health-related quality of life

of all young people with chronic illness or

disability and enable them to reach their

true potential.

www.hrtw.org

Who are CYSHCN??

“Children and youth with special health care

needs are those who have or are at increased

risk for a chronic physical, developmental,

behavioral, or emotional condition and who also

require health and related services of a type or

amount beyond that required by children

generally.”

www.hrtw.org

Nationwide 9.4 million (13%) <18 Title V CYSHCN 963,634 (0-18*) PA 26,389

SSI Recipients 1,036,990 ( 0-17) PA 57,809

386,360 (13-17) PA 22,758

Special Education ( 3-21)PA270,075

Sources:1. www.cshcndata.org2. TITLE V Block Grant FY 2006, www.mchb.hrsa.gov * Most State Title V CSHCN Programs end at age 183. SSA, Children Receiving SSI, December 2005, www.ssa.gov4. EDUCATION – PA

http://penndata.hbg.psu.edu/BSEReports/SD_Reports/2005_2006/PDF_Documents/Speced_Data_Report_State_Final.pdf

www.hrtw.org

Bad News! Areas to Improve

• 45 % Lack access to physicians familiar with their health condition

• 40 % Lack a payment source for needed health care

SOURCE: 1997 survey of young adults served by the CHOICES Project of Shriners’ Hospital

www.hrtw.org

Bad News! Areas to Improve

Survey results continued:

• 80% Lack referrals to adult health

care

providers

• 40% Use emergency care in 1 yr

compared to 25% in typical young

adults

www.hrtw.org

1. New World: New Lingo

2. Finding the Allies

3. Essential Skills

4. Whose Life is it?

5. Survive & Thrive!

Take Home Points

www.hrtw.org

New World: New Lingo

1. Moving Up from Powerless

2. Transferring Skills Doc/RNparent family & friends

Family child/youth

Youth friends

3. Strengthening Families - Support (Family to Family)

- Mentor (Life Coach)

- Counseling (Getting thru the hard patch)

- Financial Planning

www.hrtw.org


1. Co-Dependence to Interdependent

- At diagnosis: start teaching/learning

- How the system works

(DOs, DON’Ts, and BEST TIMES)

In-patient: Shift Change/30 min windows

Outpatient: Office Practice hours

Routine & Urgent

Rx refills (Tues-Thurs)

www.hrtw.org


ESSENTIAL SKILLS

Words & Lingo

Acknowledge Today (Reality)

Eye on the Future (Hope)

Live your life the way you would have, just know you will have more equipment

www.hrtw.org

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?

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

www.hrtw.org

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.

www.hrtw.org

Living Well with a Disability

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”

www.hrtw.org

Shared Decision Making

Provider Parent/Family Young Person

Major responsibility

Provides care Receives care

Support to parent

familychild/youth

Manages Participates

Consultant Supervisor Manager

Resource Consultant Supervisor

www.hrtw.org

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)

www.hrtw.org

Transition &….Medical Home

www.hrtw.org

Medical Home includes….

• A partnership - family and primary care doctor.

• A relationship - mutual trust and respect.

• Connections - supports - services for child / family.

• Respect for the family’s cultural and religious beliefs.

• After hours & weekend access to medical consultation

• Families feel supported in caring for their child

• Primary doctor works with team/other care providers

www.hrtw.org

YOUTH are 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

www.hrtw.org

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….

www.hrtw.org

Issue Pediatric Adult

Age-related

Growth & development, future focussed

Maintenance/decline:Optimize the present

Focus Family Individual

ApproachPaternalisticProactive

Collaborative Reactive

Shared decision-making

With parent With patient

Management Prescriptive Collaborative

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

www.hrtw.org

Collaborative Partnership

Goals:

• Youth defines his/her concerns

• Youth and doctor agree on health goals

• Health care skills and understanding are taught and supported

• A follow-up plan for staying healthy is identified.

www.hrtw.org

TRANSITION TEAM: The Players

Youth

Family

HealthProfessionals

CommunityResources

www.hrtw.org

Transition & ……Screening

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

www.hrtw.org

Screen for Life Areas

How does health affect:

• Employment

• Leisure, Recreation

• Community: transportation, housing, activities

• Higher Education or Training

www.hrtw.org

Screen for All Health Needs

• Hygiene

• Nutrition (Stamina)

• Exercise

• Sexuality Issues

• Mental Health

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

www.hrtw.org

Transition to Adulthood

www.hrtw.org

Steps to Promote Transition

• Talk with youth about views on how much control over health

• Provide opportunities to state feelings and be respected

• Teach health care skills at an early age

• Develop health care routines

www.hrtw.org

Steps (cont.)

• Learn more about youth development

• Provide positive feedback

• Notice language ”we”

• Promote age appropriate health care

• Practice decision making and problem solving skills

www.hrtw.org

New Brain Research

Use it or lose it!

Practice, practice, practice

www.hrtw.org

Steps (cont.)

• Provide opportunity for youth to co-sign treatment and surgery forms.

• Assist in the development or identify a peer group.

• Take time to learn why youth is not following a treatment plan

• Provide opportunities to make mistakes

www.hrtw.org

Steps (cont.)

• Research and provide information on resources and supports for living health and more independently.

• Promote a partnership with the doctor and youth.

www.hrtw.org

Mentoring

• Important strategy in a positive transition

• Peer mentoring-better adherence to health care regimen

• Enhances physical and mental health

www.hrtw.org

We

Need

More

Ads

like

this!

www.hrtw.org

Celebrate the Paperwork!

It Means You are Alive!

- Reduce stress (one thing different)

- Better at adapting

- Increase problem solving skills

- Learn how to negotiate

www.hrtw.org


Create routine – make it a habit

LIVE: Brush teeth, bathroom, wellness

PLAN: Emergency/ practice

INFO: In the car, purse, trusted others

Supplies: 2 /Keep in car, other house

Basket by the door: important papers

(better-scan)

www.hrtw.org

Celebrate the Paperwork!


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

www.hrtw.org

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)

www.hrtw.org

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

www.hrtw.org

PUBLIC: Medicaid & SSI Connection

<18 Gather medical & other evidence

18 Redetermination (based on adult standards)

18-22 Adult Student Section 432 of the Social Security Protection Act

extended the student earned income exclusion (SEIE) to any individual under the age of 22 regularly attending school, college, or training designed to prepare him/her for a paying job, this

includes students who have IEPs. https://s044a90.ssa.gov/apps10/poms.nsf/lnx/0500501020

www.hrtw.org

Growing Up Ready to LIVE!

1. Have a Dream then a Plan

2. Child/Youth is part of the community: recreation, education and a buying consumer

3. Own identity

4. Skills: communication, negotiation, resilience EQ

5. Health & Wellness for ALL family members

www.hrtw.org


Survive & Thrive

- Responsible: Role in the family

- Responsible: Medications

- Responsible: Equipment

www.hrtw.org

What is a successful transition?

Youth are able to

• Access health services independently

• Discuss their health condition

• Communicate their health care needs

• Self-manage their care or support is available

www.hrtw.org

What is a successful transition?

Youth are able to (con’t.)

• Feel comfortable seeing the doctor alone

• Make health care decisions or support is in place

Young adults

• Have insurance

• Have health care that is developmentally appropriate – primary, specialty, therapies, AT

www.hrtw.org

What would

you do,

if you thought

you could not fail?

www.hrtw.org

www.hrtw.org

www.hrtw.org

Patti Hackett, MEdCo-Director, HRTW Center

Bangor, ME

[email protected]

Ceci Shapland, RN,MSNYouth/Family Consultant

St. Paul, MN

[email protected]

www.hrtw.org

Resources-01

HRSA/MCHB funded National Centers (6)

1. HEALTH & TRANSITION www.hrtw.org Healthy & Ready to Work National Resource Center

2. MEDICAL HOME www.medicalhomeinfo.org National Center on Medical Home Initiatives

3. FAMILY PARTNERSHIP www.familyvoices.org National Center on Family and Professional

Partnerships

www.hrtw.org

Resources-02

HRSA/MCHB funded National Centers (6)

4. CULTURAL COMPETENCE

http://www11.georgetown.edu/research/gucchd/ncc

c/

National Center for Cultural Competence

5. HEALTH INSURANCE http://www.hdwg.org/cc/

Catalyst Center – for Improving Financing of

Care for CYSHCN

6. DATA www.cshcndata.org

Data Resource Center National Survey for CSHCN

www.hrtw.org

Resources - 03

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.

www.hrtw.org

Resources - 04

HRTW Portal - Laws that Affect CYSHCNhttp://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

www.hrtw.org

Resources - 05

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

www.hrtw.org

Resources - 06

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

Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME Ceci Shapland, RN, MSN HRTW Family/ Youth...

Documents

Transcript of Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME Ceci Shapland, RN, MSN HRTW Family/ Youth...