Transcript Slide 1

Healthy & Ready to Work,
to Live and to Participate!
Ceci Shapland, RN, MSN
HRTW Family/Youth Consultant
Mallory Cyr, BFA
HRTW Youth Coordinator
Maine Parent Federation
October 21, 2008
HRTW TEAM
Title V Leadership
Toni Wall, MPA
Kathy Blomquist, RN, PhD
Theresa Glore, MS
Medical Home & Transition
Richard Antonelli, MD, MS, FAAP
Patience H. White, MD, MA, FAAP
Betty Presler, ARNP, PhD
Family, Youth &
Cultural Competence
Federal Policy
Mallory Cyr,BFA
Patti Hackett, MEd
Ceci Shapland, RN,MSN
Trish Thomas
Interagency Partnerships
Debbie Gilmer, MEd
HRSA/MCHB Project Officer
Elizabeth McGuire
www.hrtw.org
Objectives
At the end of this training participants will be able
to:
• Identify the roles of parents/family and health
providers during transition in health care.
• Provide tools and resources for use during
transition in health care.
• State steps for a successful transition in health.
What Does Health Have to Do
with Transition to Adulthood?
Everything!
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.
Health Affects Everything!!
• Employment
• Home Living
• School
• Community Living
• Recreation
Health is part of Transition
Things to consider
How does health affect:
– What kind of job I have
– How and where I live
– Where I go for higher education
– What I do for recreation
– What I need in the community
It is not just about special health
needs!
Health includes:
– Hygiene
– Nutrition
– Exercise
– Sexuality issues
– Mental health
What is Health Care Transition?
Transition is the deliberate, coordinated
provision of developmentally appropriate
and culturally competent health assessments,
counseling, and referrals.
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Components of successful transition
Self-Determination
Person Centered Planning
Prep for Adult health care
Work /Independence
Inclusion in community life
Start Early
Children with Special Health Care Needs
Nationwide 9.4 million (13.9%) <18
Maine
48,891
(17.7%)
How well are youth in Maine doing in transition in
healthcare?
Maine: 49.0%
National: 41.2%
Are you surprised?
Sources:
1.
www.cshcndata.org
The Ultimate Outcome:
Transition to Adulthood
Health Care
Transition
Requires
Time & Skills
for children,
youth, families
and
their Doctors too!
Transition to Adulthood
Are youth ready to manage their own
health care???????
Areas to Improve
Survey results continued:
• 80% Lack referrals to adult health
care providers
• 40% Use emergency care in 1 year compared to
25% in typical young adults
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
Internal Medicine Nephrologists (n=35)
Survey Components
Percent of transitioned patients
Percentages
< 2% in 95% of practices
Transitioned pts. 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
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.
Which means. . . .
Goal of Transition
To grow up healthy and able to fully
participate and enjoy life!
Youth With Disabilities:
Stated Needs for Success in Adulthood
PRIORITIES:
• Career development (develop skills for a job and
how to find out about jobs they would enjoy)
• Independent living skills
• Finding quality medical care (paying for it; USA)
• Legal rights
• Protect themselves from crime (USA)
• Obtain financing for school (USA)
SOURCE: Point of Departure, a PACER Center publication Fall, 1996
Youth With Disabilities:
Stated Needs for Success in Adulthood
Main concerns for health:
• What to do in an emergency,
• Learning to stay healthy*
• 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
*SOURCE: National Youth Leadership Network Survey-2001
Factors Associated With Resilience
for Youth With Disabilities:
Which is most important?
• Self-perception as not “handicapped”
• Involvement with household chores
• Having a network of friends
• Having non-disabled and disabled friends
• Family and peer support
• Parental support w/out over protectiveness
Source: Weiner, 1992
Transition & ……Family
What is transition about??
1. Transferring Skills
Doc/RNparent family & friends
Family  child/youth
Youth  friends
2. Becoming informed consumer
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
TRANSITION TEAM: The Players
Family
Community
Resources
Youth
Health
Professionals
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….
Pediatric
Adult
Age-related
Growth&
development,
future focussed
Maintenance/decline:
Optimize the present
Focus
Family
Individual
Approach
Paternalistic
Proactive
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 Greater interface with
with education
employment
Care provision
Interdisciplinary
Multidisciplinary
# of patients
Fewer
Greater
Role of Parents
Parents/Families are key partners in transition
Questions: How do you support your child’s autonomy
and insure their safety?
Planning is important!
It has been shown that youth follow health care
treatments when they have supportive parents.
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.
Some Guidelines
• Talk with your son or daughter-about their
health and get their perspective on how they
feel about taking responsibility for it.
• What are the health goals of the youth?
• Teach health care skills-step by step
Guidelines
• Take into account adolescent developmentthey live in the present, long term goals are
not a priority.
• Find out what is relevant and use this
information in the context of their health-
being healthy for the Friday night dance!
• Provide opportunities to negotiate treatments
Guidelines
• Watch your language-do you say “we” or
“our” when talking about your child’s health
care.
• Promote developmentally appropriate carehave the doctor talk to your son or daughter
directly.
• Talk about consequences. Provide
opportunities for your child to practice, make
mistakes, learn and move on. Get the
Guidelines
Start early-simple daily routines build the
foundation for good, healthy behaviors
• Brushing teeth, washing hands, assisting in
the bath
• Safety rules-seatbelts, etc
• Exercise
• Good nutrition
• Personal privacy
• Making choices
Parents as Coach
• Being ready to let them make a mistake.
Every mistake is an opportunity to increase
competence.
• Break habit of offering advice or problemsolving for understanding-take two deep
breaths-this slow you down.
• Teach communication and problem-solving-it
is key!
Parents as Coach
• Share information! People without
information cannot act responsibly.
• Empowerment means you have freedom to
act and your are accountable for the
outcome.
• Empowerment comes from teaching others
things they can do to become less dependent
on you.
Levels of Support
Levels of Support
Family Role
Young Person
Independent
Coach
Can do or
can direct others
Interdependent
Consultant
Coordinates
Dependent
Can do or
can direct others
May need support
in some areas
Manages
Coordinates
Needs support
full-time -all areas
expand
circle of support
expand circle of support
ASSENT to CONSENT
Eastern Maine Medical Center
• A parent or guardian is generally required to
sign for a patient under the age of 18. Patients
aged 14-17 should also sign. See IDD 20.041.
• If an adult is unable to make or communicate
medical decisions, then the following may sign in
the priority given: agent under healthcare power
of attorney, guardian, spouse, domestic partner,
next-of-kin. See IDD 20.060 Indicate capacity of
representative.
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
Preparing for the
15 minute Doctor Visit
Know Your Health & Wellness Baseline
• How does your body feel on a good day?
• Prepare questions at each visit
• Give brief health status & overview of needs.
• Know emergency plan when health changes.
• What is your typical body temperature?
– Respiration, heart rate and blood pressure.
Do you have “ICE” in your
cell phone contact list?
To Program:
• 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)
Skills
for
Children & Youth
What to do
By Age 10
Before Age 18
• CHORES: Are you doing chores?
• ATTENDANCE: How are you doing in school?
• PLANNING: How are you doing with your plan?
• PARTICIPATION: What do you do when you
are not in school?
• CAREER: What kind of work do you want?
• STAY WELL: Are you taking care of your health?
Skills
Before 10
• Carry and present insurance card
X
• Know wellness baseline, Dx, Meds
X
• Make own Doctor appts
X
• Call in Rx
• Learning Choice
Before 18
X
X
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
X
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
National Center of
Medical Home Initiatives
Elements of Medical Home
Care that is:
–
Accessible
– Family-centered
– Comprehensive
– Continuous
– Coordinated
– Compassionate
– Culturally-effective
and for which
the primary care
provider shares
responsibility
with the family.
Talking to your Doctor about
Transition
• Ask your doctor about the clinic transition policyask if it is posted
• Talk about legal issues before 18
• Develop an individual care plan for transition
• Assess transition skills-Changing Roles
• Identify a primary care
• Consider co-management
Guidelines
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
Guidelines
Apply preventive screening guidelines
• Stay healthy
• Prevent secondary disabilities
• Catch problems early
Pediatrics 2002:110 (suppl) 1304-1306
Guidelines
•
Exams include routine screening for risk taking
and prevention of secondary disabilities
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Practice teaches youth lifelong preventive care,
how to identify health baseline and report
problems early; youth know wellness routines,
diet/exercise, etc.
Screen for All Health Needs
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Nutrition (Stamina)
Exercise
Sexuality Issues
Mental Health
Routine (Immunizations, Blood-work, Vision, etc.)
Secondary Conditions/Disabilities
Accelerated Aging issues
Guidelines
Ensure affordable, continuous health insurance
coverage
• Payment for services
• Learn responsible use of resources
Pediatrics 2002:110 (suppl) 1304-1306
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
HEALTH CARE INSURANCE
•
Practice is knowledgeable about state
mandated and other insurance benefits for
youth after age 18
•
Practice provides medical documentation when
needed to maintain benefits
Extended Coverage
– Family Plan
• Adult Disabled Dependent Care
Incapable of self-sustaining employment by reason
of mental or physical handicap, as certified by
the child's physician on a form provided by
the insurer, hospital or medical service corporation
or health care center
• Adult, childless continued on Family Plan
Increasing age limit to 25-30
CO, CT, DE, ID, IN, IL, ME, MD, MA, MI, MT, NH,
NJ, NM, OR, PA, RI, SD, TX, VT, VA, WA, WV
Transition and the Youth with
Development Disabilities
• Level of participation
• Supports
• Health advocate
Health Affects Everything!
• Mallory’s Story!
Health Affects Everything!
Mal’s Story
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•
•
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Graduated college
Great job
Travels often
Good social life
Then what…………………….???
Assessing Health in Transition:
Employment
• Does Mal’s health condition dictate what
work she is able to do?
• Should she disclose her health condition to
the employer?
• Does her health dictate how much she is
able to work/travel?
• Will her treatment or medications affect
her work duties?
Post Secondary Education
• Will Mal be able to do her medical care
properly and safely at school?
• Or is there somebody designated who
can?
• How will she get around campus?
• Will Mal need accommodations in her
schedule for medical treatments and/or
appointments?
Home Living
• Does Mal understand the details of her medical
condition?
• Does she carry her own emergency medical
information?
• Does Mal know how to keep track of her medical
supplies and make sure she doesn’t run out of
anything?
• Does Mal have an emergency plan?
• Does Mal have health insurance?
Community Life
• Does Mal have an adult health care provider?
• Does she know how to communicate her health care
needs?
• Does she know when, how and where to fill a
prescription?
• Does she know how to travel to the doctor or
drugstore? Does she have transportation?
Leisure-Recreation
• Does Mal understand the effects of
recreational drugs or alcohol on her health
condition?
• Will her health condition affect her choice of
activities?
Using the IEP for Health
Transition
Goal:
I will learn about my health and my health needs to live
more safely in the community.
Objective:
I will develop a portable medical summary.
I will learn three side effects of my medication
Using the IEP for Health
Transition
Objective:
I will develop an emergency plan with my
physician.
I will identify and interview two adult physicians
and choose a new adult doctor by June,
2008.
What would
you do,
if you
thought
you could
not fail?
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.
• Start early!!!!!
• Reinforce life span skills - Prepare for the marathon
• Assist youth to learn how to extend wellness, practice
skills and learn
• Reality check: Have all of us done the prep work for the
send off before the hand off?
Transition is complete when:
• Youth has health care that is paid for
• Care that is developmentally appropriate
• Able to self manage or support is identified
• Able to make health care decisions or support is in place
• Youth Leaders are partners in policy review and
development
Effects of a well planned transition:
• Improved disease control
• Vocational readiness
• Quality life
Resources
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.
Resources
HRTW Portal - Laws that Affect CYSHCN
http://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
Resources
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
Resources
• 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
GOT DATA!
www.cshcndata.org
www.familyvoices.org
www11.georgetown.edu/research/gucchd/nccc
www.hdwg.org/catalyst/index.php
State-at-a-Glance
Chartbook on
Coverage and Financing
of Care for Children and
Youth with Special Needs
Medicalhomeinfo.org
http://www.championsinc.org