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Personal Experience Fuels the Passion for Youth Involvement in Creating Systems Change in Health Policy & Practices. Ginger Payant Champions for Inclusive Communities Mallory Cyr & Patti Hackett Healthy & Ready to Work . Learning Objectives (1).

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slide1
Personal Experience Fuels thePassion for Youth Involvement in Creating Systems Change in Health Policy & Practices

Ginger Payant

Champions for Inclusive Communities

Mallory Cyr & Patti Hackett

Healthy & Ready to Work

learning objectives 1
Learning Objectives (1)
  • Define a Community-Based System of Services
  • Introduce the 6 National Performance Outcomes for Children and Youth with Special Health Care Needs
learning objectives 2
Learning Objectives (2)
  • Understand the value of youth participation
  • Demonstrate how the outcomes can be integrated at the community level
slide4

Purpose

  • Interactive discussion that shares ideas and strategies to support an environment to engage youth and young adult involvement in creating systems change at the individual and community level.
slide5

Interactive Time

Qs, As, Sharing?

champions for inclusive communities
Champions for Inclusive Communities

Who We Are…..

  • National Center funded By Maternal and Child Health Bureau
  • Support CYSHCN outcome #5
  • “Services are organized so families can use them easily and are satisfied with the services they receive.”
slide8

Mallory H. Cyr

Youth Coordinator

HRTW Natl Resource Center

Gray, Maine

VIRTUAL:

Traditional Conf Call

healthy ready to work national resource center
Healthy & Ready to Work National Resource Center

The Ultimate Outcome: Transition to Adulthood

Health Impacts All Aspects of Life

  • All youth with special health care needs (YSHCN) receive the services necessary to transition to all aspects of adulthood, including adult health care, employment and independence.
slide12
Health Care Transition

Takes Time & Skills

  • Increasing Youth Involvement
  • Health & Wellness Baseline
  • Maintaining Health Insurance
  • Documenting Disability
slide13

Who is Here?

Meeting Your Needs Today

slide14

Sharing (experts in the room)

  • Success for YOU will look like?

Taking ACTION post cards

  • 1 step change

 1wk, 30 days, 3 months

slide15

Mallory H. Cyr

Youth Coordinator

HRTW Natl Resource Center

Gray, Maine

VIRTUAL:

Traditional Conf Call

increasing opportunities for youth involvement
Increasing Opportunities for Youth Involvement

Changing Attitudes

  • ADMINISTRATION – Policies & Practices
  • STAFF – Automatic Inclusion
  • FAMILY – Changing Roles (Passing the Torch)
  • NATIONAL – Policy & Practices
slide17

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”

slide18

Growing Up:

As individuals

Different personalities

Different Dreams

Same Dx but different

slide20

Growing Up

Ready

for LOVE

slide22

You can’t do it as well as

I can

I don’t

want you

to get hurt.

what is transition all about
Whatis Transition All About?

Universal rite of passage in becoming more independent and self reliant:

Puberty

Self reliance-health, social, employment

what is transition all about25
What is Transition All About?

Autonomy

Different circles of friends and contacts

Finding new sources of social and instrumental support

what is a system of services
What is a system of Services?
  • A family-centered network of community-based services designed to promote the health and well-being of CYSHCN and their families.
  • Bringing these services to families helps ensure that no child is left behind and that mandates of the President's New Freedom Initiative are met.
  • Community-based services may look different from state to state and community to community, but they should all meet the following six performance outcomes:
slide28

Roles of Youth and Families in Supporting Community-Based Systems

Roles

for Youth

Family Level

  • Serve as care coordinators
  • Cultural brokers
  • Connect families to resources
  • Become involved
slide29

Roles

for Youth

Community

Level

  • Bring private/public partners to table
  • Conduct outreach/marketing
  • Mentor/educate future leaders
  • Members of decision-making councils
slide30

Roles

for Youth

  • Hired as Title V staff
  • Decision-making councils
  • Legislative lobbying
  • Measurement: family/youth needs, outcomes

State Level

slide31

Comments From Young Adults

  • Youth Voice: Youth voice is valuable and needs to be heard.
  • Dignity & Respect: Understand that people with disabilities have a lot to contribute in the work environment.
slide32

Eliminate discrimination: Make the community disability friendly

  • Knowledge: Help us to know what is available, make sure youth/young adults know how to advocate for themselves. When parents have done all for them, they don’t know what to do.
slide35

Outcome #6: Youth with special health care needs who receive the services necessary to make appropriate transitions to adult health care, work and independence -- CYSHCN ages 12-17 only (derived)

NO: 62.9%

YES: 37.1%

slide36

Question: (C6Q0A_E) Has anyone discussed with you how to obtain or keep some type of health insurance coverage as [CHILD'S NAME] becomes an adult?

Not necessary??? 35.6%

NO: 45%

YES: 19.3%

slide38

Michelle’s Law (October 9, 2009)

Students on Family Health Plan House Bill 2851

  • Federal law requires health plans and issuers of health insurance coverage to continue coverage for college students who are forced to take a leave of absence or change their enrollment status due to a serious illness or injury.
slide39

House Bill 2851 (HR 2851) Con’t.

  • This law applies to fully insured and self-funded (ERISA and non-ERISA) Group and Individual medical, pharmacy, behavioral health and, when part of the health plan, dental and vision coverage.
slide43

Mallory H. Cyr

Youth Coordinator

HRTW Natl Resource Center

Gray, Maine

VIRTUAL:

Traditional Conf Call

slide44

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?

Always: 49.3%

Never: 11.8%

Sometimes/Usually 38.9%

slide46

Mallory H. Cyr

Youth Coordinator

HRTW Natl Resource Center

Gray, Maine

VIRTUAL:

Traditional Conf Call

changing perspectives 01
CHANGING PERSPECTIVES - 01
  • What are your first thoughts about transition for the child/youth in your practice or community?
  • Thinking again from another point of view, how else can you describe this emotion, the fears, the anxieties, where do you believe there are gaps? Where are the strengths?
changing perspectives 02
CHANGING PERSPECTIVES - 02
  • What are the fear and anxieties that

delay the start of transition?

  • How does looking at a different perspective promote movement forward?
transition incentive awards find ings
Transition Incentive Awards Findings

11 statewide projects - Champions for Progress,

precursor to ChampionsInC :

AZ, AL, CO, DE, FL, MI, NM, NV, OH, WI, WY

  • Findings:
  • 1. Transition is a process, not an event
  • 2.CYSHCN have little or no experience managing their own health care,
slide50

Findings:

3. Disconnect between Youth and adult expectations of education and employment opportunities;

4. Youth with SHCN want to be considered like any young adult without special health care needs;

5. Families tend to be unaware of programs and resources that could help;

slide51

Findings

6. Pediatric & adult health care professionals little experience to communicate /collaborate – don’t know other system parts

7. Systems level coordination between the health care system, education, rehabilitation or insurance systems is very problematic .

slide52

Mallory H. Cyr

Youth Coordinator

HRTW Natl Resource Center

Gray, Maine

VIRTUAL:

Traditional Conf Call

slide53

YACs - State Title V CSHCN Programs

YAC- established in Title V (18)

AL, AZ, CA, CT, FL, HI, IA, KY, MA, ME, MI, MS, NY, OH, OR, SC, UT, WI

YAC – with another agency (02)

CO, RI

YAC- planned (12)

GA, IL, KS, MN, NE, NH, NC, ND, OK, TX, WA, WV

gaining a voice
Gaining a Voice
  • Mentors – Peers/ Youth Leaders
  • Mentors – Adult Allies
  • Coach – Improving skills & knowledge
  • Allies (within the system)
resiliency no soft landings
Resiliency = No SOFT landings
  • Experience rejection/disappointment!
  • Practice conversation beyond NO
  • Allow the experience if not harmful, bruised egos are ok
  • If given the same circumstances what would you do differently?
leadership level
Leadership Level
  • Presentations (community, state, national)
  • Policy Level (community, state, national)
  • Compensation
slide58

DO or NOT DO,

there is no “try”.

slide59

Q & A

Ginger Payant

ginger@eiri.usu.edu

Mallory H. Cyr

mallorycyr@hrtw.org

mallorycyr@yahoo.com

Patti Hackett

pattihackett@hrtw.org

pattihackett@yahoo.com