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www.hrtw.org Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17, 2006 What’s Health Got to Do With Transition? EVERYTHING!
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Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

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Page 1: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

www.hrtw.org

Patti Hackett, MEdCo-Director, HRTW Center

Bangor, ME

“Real Options Making the Move”Statewide Conference on Transition

October 16 – 17, 2006

What’s Health Got to Do With Transition?

EVERYTHING!

Page 2: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

www.hrtw.org

Sweetest Day!

3rd Saturday in the month of October, Sweetest Day observance originated in Cleveland in 1922.

Herbert Birch Kingston, a philanthropist and candy company employee wanted to bring happiness into the lives those who were forgotten.

Thank-YOU

Page 3: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

www.hrtw.org

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.

Page 4: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

www.hrtw.org

HRTW website: www.hrtw.org

Page 5: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

www.hrtw.org

Patti Hackett, MEdCo-Director, HRTW Center

Bangor, ME

[email protected]

Page 6: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

www.hrtw.org

HRSA/MCHB State Title V CSHCN Programs

                                    

• 1935 - Congress passed the Social Security Act, a law designed to bring some financial and health security into the lives of America's most vulnerable citizens.

• Title V creates Children with Special Health Care Needs (CSHCN) in every state, the District and territory

• Healthy People 2010 Objective 16-23 “Increase the proportion of States and territories that have service systems for CSHCN.”

Page 7: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

www.hrtw.org

Arc of Illinois

Family to Family Health Information and Education Center

•Info and referral services

•Health-related training opportunities

•Specialized training for leaders

•Links - local, regional, statewide and national

Faye Manaster

708-560-6703 / Toll Free: 866-931-1110

Illinois Relay: Dial 711

E-mail: [email protected]

www.thearcofil.org/familytofamily/index.asp

Page 8: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

www.hrtw.org

http://www.uic.edu/hsc/dscc/

http://internet.dscc.uic.edu/dsccroot/parents/transition.asp

•Transition Information Sheet for Families

•Transition Worksheet for Parents, Youth

•Transition Timeline

•Health Care Checklist

•School to Work Checklist

•Preparing for the Future: Transition to Adulthood

•Questions to Ask Potential Adult Care Physicians

•Bridging the Gap Between Pediatric and Adult Services

Darcy Contri

[email protected] 

Page 9: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

www.hrtw.org

Growing Up Ready to LIVE!

Health & Wellness + Humor

Page 10: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

www.hrtw.org

1. Know the resources.

2. Make the personal connections.

3. Why not TRY….Be open to new ideas. (have the old ways really worked?)

4. Transition Plan starts in utero. Changes at Dx and Cx in health status.

5. Health & Wellness make the difference!

Take Home Points

Page 11: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

www.hrtw.org

Little Miss-Matched

5M

Page 12: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

www.hrtw.org

Disabled?? Special Health Care Needs?

HEALTH SERVICES CYSHCN - Children & Youth with Special Health Care Needs - Genetic - Chronic Health Issues - Acquired

EDUCATION SERVICE

- Youth with Disability

- Youth with Health Impairment

ADA & 504

- Disability and/or Health Impairment

Page 13: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

www.hrtw.org

NFI: Delivering on the Promise p. III-39

HRSA's MCHB will take the lead in developing and implementing a plan to achieve appropriate community-based services systems for CYSHCN and their families.

Barrier Addressed by Solution / Access to: 1. Comprehensive, family-centered care 2. Affordable insurance 3. Early and continuous screening for SHCN and 4. Transition services to adulthood4. Transition services to adulthood

Page 14: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

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

Page 15: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

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.

Page 16: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

www.hrtw.org

DATA: Nationwide

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

SSI Recipients 1,036,990 0-17

386,360 13-17 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.gov

Page 17: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

www.hrtw.org

DATA: Illinois

Title V CYSHCN 22,359 0-18*

SSI Recipients 44,387 0-17

17,455 13-17

Special Education 283,742 6-21Graduation 78.5%

Sources:Illinois State Board of Education Annual Report, 2004

http://www.isbe.state.il.us/spec-ed/pdfs/Annual_Report_2004.pdf

Page 18: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

www.hrtw.org

SSI Recipients Who Work: 18-29

IL <18 18-21 22-29

13,534Nationally

3,314

1.0%

32,658

9.7%

79,819

23.7%

IL: # 34Incentives

Gross earnings above SGA $860

75 1619 a Work + SSI Benefits

135 2,139 4,752

3,044 1619 b no SSI + Medicaid

185 3,176 19,252

31 PASSSSI+ Dedicated Savings

3 65 321

210 IRWE 5 312 2.042

255 BWE 4 111 619

Page 19: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

www.hrtw.org

CORE National Performance Measures

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

SOURCE: BLOCK GRANT GUIDANCE New Performance Measures See p.43

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

Page 20: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

www.hrtw.org

Transition & ……Screening

Page 21: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

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

Page 22: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

www.hrtw.org

Screen for Life Areas

How does health affect:

• Employment

• Leisure, Recreation

• Community: transportation, housing, activities

• Higher Education or Training

Page 23: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

www.hrtw.org

Screen for ALL Health Needs

• Hygiene

• Nutrition (Stamina)

• Oral Health

• Sexuality Issues (“Doing IT,” GLBTQ)

• Mental Health

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

Page 24: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

www.hrtw.org

Transition & ……Family & Youth

Page 25: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

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)

Page 26: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

www.hrtw.org

F1 = HELP button

•Life-Long Learning

•Lessons from Marketing, Business

•Email - Group Think Tank

•Create-Wisdom Council, Solutions Bank

Page 27: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

www.hrtw.org

1. Know Your Health & Wellness Baseline

- How does your body feel on a good day?

- What is your typical body temperature, respiration

count, pulse and elimination habits?

2. Create 1 page Portable Medical Summary

- Use as a reference tool

- accurate medical history and contact numbers.

- Carry in your wallet.

-Use for disability documentation

Page 28: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

www.hrtw.org

3. Teach Skills EARLY! 

Survive & Thrive!

- Encourage questions at each visit.

- 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.

Page 29: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

www.hrtw.org

Getting Ready to Move On

The Difference - the difference between pediatricians and adult providers.

Finding a Doctor – ask around - who may match styles in co-managing health care.

Finding a Match - Encourage youth to interview the physician and check out the practice and hospital before the official transfer.

Keeping Insurance - Check health care insurance plan. Do this before age 18.

Page 30: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

www.hrtw.org

Transition &….Medical Home

Page 31: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

www.hrtw.org

Shared Decision Making

Provider Parent/Family Young Person

Major responsibility

Provides care Receives care

Support to parent/family and child/youth

Manages Participates

Consultant Supervisor Manager

Resource Consultant Supervisor

Page 32: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

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

Page 33: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

www.hrtw.org

Transition & …. Health Care

Page 34: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

www.hrtw.org

Health?? Services - Payor(more than Medicaid)

HEALTH • Wellness

HEALTH CARE SERVICES• Medical Home• Primary Care• Care Coordination

HEALTH INSURANCE• Public (Medicaid to Medicare)

• Private (Family Plan/Self)

Page 35: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

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

Page 36: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

www.hrtw.org

PUBLIC: Medicaid & SSI Connection

Medicaid is automatic in all but 11 states known as “209B States”

CT, HI, IN, IL, MN, MO, ND, NH, OK, OH,

and VA

- State requires separate application to Medicaid

- State has at least 1 more stringent requirement than the SSI rules for Medicaid eligibility

Page 37: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

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

Page 38: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

www.hrtw.org

PRIVATE: Adult Disabled Dependent

< 18 - Check Policy -- Family Plan 40+ states have insurance law Requires documentation IL Code Sections 5/356b, 5/367b - from Ch. 73, par. 968b

• Incapable of self-sustaining employment

• dependent- lifetime care /supervision

Page 39: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

www.hrtw.org

Transition to Adulthood

Page 40: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

www.hrtw.org

50% policy to transition youth ages 16-25

ASSENT & CONSENT 18% written policy legal responsibility medical decisions & health records > 18

Of these practices

- 71% seek verbal assent

·- 25% seek written assent

TRANSITION POLICY

Page 41: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

www.hrtw.org

28 from 17 states

25 pediatricians; 2 Med-Peds, 1 Family Physician

AAP-CATCH grants, MCHB Integrated Services Grants, Medical Home Learning collaboratives, Medical Home projects, AAP listserve, LEAHs – most are physicians participating in medical home projects.

TRANSITION POLICY

50% have a policy to transition youth ages 16-25

54% coordinating transition activities

ASSENT & CONSENT

18% written policy - legal responsibility for

medical decisions and health records prior to

age 18. Of these practices

- 71% seek verbal assent

·   - 25% seek written assent

Page 42: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

www.hrtw.org

Practices get transition information from:

54% self-directed research

57% staff-based care coordinator

46% family to family support groups 

FINDING INFORMATION

Referral to Other Transition Supports

Practices seldom refer to other transition supports

Page 43: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

www.hrtw.org

What would

you do, if you

thought you could

not fail?

Page 44: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

www.hrtw.org

1. Know the resources.

2. Make the personal connections.

3. Why not TRY….Be open to new ideas. (have the old ways really worked?

4. Transition Plan starts in utero. Changes at Dx and Cx in health status.

5. Health & Wellness make the difference!

Take Home Points

Page 45: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

www.hrtw.org

Patti Hackett, MEdCo-Director, HRTW Center

Bangor, ME

[email protected]

Page 46: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

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

Page 47: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

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.

Page 48: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

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

Page 49: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

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

Page 50: Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17,

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


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