health care transition "preparing for the difference: are you ready to change roles? transition...

Health Care Transition

"Preparing for the Difference:

Are You Ready to Change Roles?

Transition to Adulthood is the Ultimate Outcome"

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Yeah that’s the title

– but what are YOU really

thinking?

Health Care Transition

Taking the “F” (fear) out of

Health Care Transition for CYSHCN

The KSAs of Essential Health Care Transition Skills

FV National Conference

HRTW Patti Hackett, MEd

Natick, MA

Mallory Cyr, BFA Sabattus, ME

FV -MEAnna H. Cyr

Sabattus, ME

FV-TNJulie Sullivan

Rock Island, TN

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Objectives in Operational/ Behavioral Terms

• PART 01: The learner will state the rationale behind the importance of addressing and acknowledging anxieties and fears of families before teaching transition skills that are transferable to youth.

• PART 02: The learners will be able to identify differences between KSAs - Knowledge, Skills and Abilities as they relate to preparing for practice and mastery of essential skills for Health Care Transition to Adulthood for CYSHCN

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Objectives in Operational/ Behavioral Terms

• PART 03: The learner will identify lessons learned, apply it to their personal journey with their child and family and incorporate changes in work activities and functions that support other families and CYSHCN.

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Julie SullivanJulie Sullivan

TNTN

Candid Candid conversationconversation

Mallory CyrMallory Cyr

MEME

Anna Cyr

ME

Patti Hackett

MA

Advice with Advice with HindsightHindsight

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Health is Critical to School Success & Sustaining Employment

• Success in the classroom, in the community, and on the job requires that young people are healthy. (performance and productivity)

• Young people with life-long health issues need to learn early how to maintain and sustain health and wellness -- and to participate in their health care decisions.

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Outcome #6: Youth with special health care needs who receive the services necessary to make appropriate transitions to adult health care, work and independence

-- CSHCN ages 12-17 only (derived)

Outcome not achieved

Outcome successfully achieved

- 58.8 + 41.2

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www.hrtw.org

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What is Health Care 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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Growing Up: Part of a Loving Family

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Growing Up: Supportive Family (2 philosophies)

Growing Up: Ready

to Have Fun!

Putting LIFE

on the front burner

& the Dx

on the back burner

Not …… “can we” but …….“how do we”

Growing Up:As individuals

Different

personalities

Different Dreams

Same Dx but

different

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Growing Up Readyto try new things!

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Growing Up: Completing college

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Growing Up Ready

for LOVE

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Growing up ready for work……….. & vacation

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Growing Up

and

are

Adults

Health & Wellness …. + Humor 19

Growing Up: Planning for What’s Next!

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What are we What are we saying saying NONO to? to?

The opportunity to TRYThe opportunity to TRYTo fail, learn and to try againTo fail, learn and to try again

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You can’t do it as well

as I can

I don’t want you

to get hurt.

1. CHANGING PERSPECTIVES:

• What are your first thoughts about transition for your child/youth?

• Thinking again from another point of view, how else can you describe this emotion, the fears, the anxieties, where are you confident or not?

• What are the fear and anxieties that delay the start of transition.

• How does looking at a different perspective promote movement forward.

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Anna CyrAnna Cyr

Take small steps, practice letting go

Two daughters – different individualsTwo daughters – different individuals

Julie Sullivan Parents need parents who have been there and need their guidance on where to start.

Due to day to day struggles we (parents) won’t begin unless forced to~ either by their youth’s age, service requirements or other parents bringing us along.

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Candid Conversation Julie Sullivan• Some questions that HRTW professionals asked would

have been ignored or I would have been insulted for being asked if asked to me by teachers, MD’s or other providers. Parents and speaking from personal experience, I felt it carried weight and was real. I took notice and considered how I can apply this to my daughter’s life.

• (myself & our staff) We not only needed parents to ask those hard questions but we need to be held accountable and asked “did you?” We did this on follow up conf. calls.

• We couldn’t ask other parents to do things if we weren’t doing it ourselves. In the process our parents leaders made copies of insurance cards, chore charts, and let their children order at McDonalds. 25

Part 02

Changing Roles

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Question:  (C6Q08)How often do [CHILD'S NAME]'s doctors or other health care providers encourage [him/her] to take responsibility for [his/her] health care needs?

Never Sometimes Usually Always

11.9 16.3 23 48.7

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Handout: Portable Medical Summary

Carry 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 29

Health & Transitions: YOU & Your Child

• HANDOUT: Changing Roles

• Fears & Anxiety

• 1 new step at a time strategies

Carry & Present Health Insurance Card 1 2 3 4 5

YOU

YOUR CHILD

YOUR STUDENT

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Mallory CyrMallory Cyr

Balance between childhood- being a child and when the Balance between childhood- being a child and when the need to know and do/take action.need to know and do/take action.

Julie Sullivan

One parent who attended our transition training said she never thought of the insurance card and he will be going to college next year.

Within a week of the training she gave him a card and this opened a discussion up of what a co-pay is and what your insurance card is for and how important it is to have with you. She shared that her son was very happy to have the card and proudly put it with his learners permit in his wallet.

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FAMILIES: Prepare for Changing Roles

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

- 2 voices to be heard: families and CY - Circle of Support - Assent to Consent

handout: Changing Roles32

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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Julie SullivanJulie Sullivan

TNTN

Candid Candid conversationconversation

Mallory CyrMallory Cyr

MEME

Anna Cyr

ME

Patti Hackett

MA

Advice with Advice with HindsightHindsight

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Part 03

Transition Skills in our life and in our work

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FAMILIES: Prepare for Changing Roles

• Self-Differentiation is a progressive, internal

interplay between autonomy (separation)

and connection (togetherness) while progressing

toward developing and known goals.

SOURCE: http://rodesmith.com/2006/03/25/bowen-differentiation/36

TOOL: Promote Individual

• Families - protective

• Children / Youth - being visible - community aware

*** be in charge of something

Simple Acts …..BIG Returns

Role in the family

- Grocery Store

- Nightly Charge Wheelchair

- Get Family Mail /sorting

- Medications – pill box

- 3 indicators on Rx bottle

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Candid Conversation Mallory Cyr

1. Know when to ask for helpMy parents always supported me to try things on my own but they also helped me to learn to recognize when I had reached my breaking point and needed additional support and how to identify those key players. Over time I got better at this skill and could ask for help BEFORE I reached my breaking point.

2. Shoot for the stars/find a way.Growing up, I was never taught to consider my physical challenges to be a limiting factor in anything I wanted to do. I always thought with unlimited dreaming and what I WANTED to do. If it did end up being challenging we looked at ways to adapt or modify it or how I could do it, not what I should do instead. I think because of that I continue to aspire to higher goals and have become more resourceful in finding solutions when I do meet a challenge... 38

Skills Before10

Before 18

• Carry and present insurance card X

• Know wellness baseline, Dx, Meds X X

• Make own Doctor appts X

• Call in Rx refills 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 X39

Imagine the Possibilities….

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Julie SullivanJulie Sullivan

TNTN

Candid Candid conversationconversation

Mallory CyrMallory Cyr

MEME

Anna Cyr

ME

Patti Hackett

MA

Advice with Advice with HindsightHindsight

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Candid Conversation Julie Sullivan

• We need to find one thing we can do fairly immediate to

feel as if we are working and making progress toward this

goal.

• We need to find one thing that our youth can implement

fairly immediate so they too can have satisfaction in

progressing toward independence. 42

•

Action Plan I Did It!

7 days - Step 1:In one week I will commit to do……

30 days - Step 2:By next month I will commit to do……

90 days - Step 3: In three months I will commit to do……

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What are we saying NO to? What are we saying NO to? 44

DO or NOT DO, there is no “try”.

Jedi Master Yoda

Patti Hackett pattihackett@yahoo.com

Mallory H. Cyrmallorycyr@hrtw.org

mallorycyr@yahoo.com

Anna H. Cyrannahcyr@yahoo.com

Julie Sullivan fvtn@tndisability.org

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Q & A

www.familyvillage.wisc.edu/

www.familyvillage.wisc.edu

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www.fvkasa.org

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??? NYLNwww.nyln.org/

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www.ncwd-youth.info/index.html

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Got Data?

www. cshcndata.orgData Resource Center National Survey for CSHCN

Nov.2007

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www.familyvoices.org

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www11.georgetown.edu/research/gucchd/nccc

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infanthearing.org

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Medicalhomeinfo.org

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www.hdwg.org/catalyst

State-at-a-Glance Chartbook on Coverage and Financing of Care for Children and Youth with Special Needs

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http://www.championsinc.org

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www.hrtw.org

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