Nevada Youth Health Care Transition Training

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Nevada Youth Health Care Transition Training

• February 4, 2006
• Sunrise Childrens Hospital Auditorium

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Acknowledgements
This is a project of the Champions for Progress
Initiative funded through a HRSA/MCHB cooperative
agreement (U42MC00241) Diana Denboba, Project
Officer
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Acknowledgements
This is a project of the Nevada Family to Family
Health Care Information and Education Center
funded through a grant CFDA 93.779 from the U.S.
Department of Health and Human Services, Centers
for Medicare Medicaid Services, Project
Officer, Kathy Rama.
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Medical Home
In Collaboration With American Academy of
Pediatrics Family Voices Healthy Ready to Work
National Center Maternal and Child Health
Bureau National Association of Childrens
Hospitals and Related Institutions Shriners
Hospitals for Children
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Transition Programs for Youth with Emotional and
Behavioral Difficulties
Nicole Deschênes Hewitt B. Rusty Clark AMCHP
Annual Conference Mental Health promoting a New
Paradigm for MCH Public Health Practice February
29, 2004Washington, DC
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Adolescent Health Transition Project (AHTP)
Sponsored by Washington State CSHCN
Program E-mail healthtr_at_u.washington.edu
Address Box 357920 University of
Washington Seattle, WA 98195-7920
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Special Thanks!

• Project Advisory Team members
• Martin Cayer
• Gloria Deyhle
• Chelsea McLauchlin
• Mary McLauchlin
• Cheryl Murphy
• Santa Perez

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Special Thanks!

• Family TIES Staff
• Dixie Gonzales,
• Project Director
• Rosa Waitman,
• Southern Nevada Health Care Specialist
• Marcia OMalley
• Executive Director

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Learning Objectives

• Describe barriers that often interfere with a
  young persons successful transition to
  independence, and adult health care.
• Describe strategies and promising practices that
  can assist young people, their families, and
  providers to overcome these barriers.
• Understand American Academy of Pediatrics policy
  recommendations related to transition of Youth
  with Special Health Care Needs.

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Learning Objectives, cont.

• Assist youth in obtaining the services and
  resources needed to successfully transition from
  pediatric to adult health care.
• Initiate changes in practice that will support
  youth in transition.
• Support self-determination of YSHCN by
  encouraging their key advocacy role in preserving
  their health and healthcare supports.

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• Have increased expectations for Youth with
  Special Health Care Needs!

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A National Agenda for CYSHCN

• Core Outcomes to be Achieved
• All children with special health care needs will
  receive coordinated ongoing comprehensive care
  within a medical home.
• All families will have adequate private and/or
  public insurance to pay for the services they
  need.
• All children will be screened early and
  continuously for special health care needs.

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A National Agenda for CYSHCN

• Core Outcomes cont.
• Services will be organized in ways that families
  can use them easily.
• Families will partner in decision making at all
  levels, and will be satisfied with the services
  they receive.
• All youth with special health care needs will
  receive the services necessary to make
  appropriate transitions to adult health care,
  work, and independence.

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How Are We Doing?

• Nationwide
• Not Achieved
• 94.2
• Estimate 1,051,647 YSHCN
• Nevada
• Not Achieved
• -94.3
• Estimate 7,304 YSHCN

Child and Adolescent Health Measurement
initiative (2005). National Survey of Children
with Special Health Care Needs.
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A National Agenda for CYSHCN

• GOAL
• To maximize lifelong functioning
• and potential through the provision
• of high quality, developmentally
• appropriate health care services
• that continue uninterrupted as
• the individual moves from
• adolescence to adulthood.

Consensus Statement endorsed by American Academy
of Pediatrics, American Academy of Family
Physicians and American College of
Physicians-American Society of Internal Medicine
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Section OneTransition Realities
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CYSHCN Definition

• . . . 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.

Maternal and Child Health Bureau, 1995
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Significance What Does Health Have to Do With
Transitions?
Optimal health for children and youth is achieved
when every person at every age receives health
care that is medically and developmentally
appropriate.
Consensus Statement endorsed by American Academy
of Pediatrics, American Academy of Family
Physicians and American College of
Physicians-American Society of Internal Medicine
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Significance What Does Health Have to Do With
Transitions?

• If children and youth do not maintain
• optimal health
• More emphasis on crisis and less on typical life,
  fun, and activities
• More on living as a patient, less as a kid
• Missed school with interruptions in learning
• Functional declines leading to social isolation

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What YSHCN Say

• 90 want to live and work
• independently
• Many feel they are treated like a child
• Many feel a loss of control
• They feel they are not seen as unique individual,
  separate from their condition
• Health care providers defer to parent(s)
• Many desire privacy and confidentiality

NYLN Survey 2002 Rosen DS. Grand Rounds all
grown up and nowhere to go transition from
pediatric to adult health care for adolescents
with chronic conditions. Presented at Childrens
Hospital of Philadelphia 2003 Philadelphia, PA
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What YSHCN and Families Commonly Feel

• Transfer to a new medical professional is a
  punishment or rejection
• Grief and loss
• Loss of formal and informal social supports
• Overwhelmed with new responsibilities
• Parents feel alienated

NYLN Survey, 2002
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What YSHCN and Families Say They Need

• Information about resources
• Referrals to services
• A written health transition plan (who, what,
  when, and how)
• An advocate to assist, explain, and encourage
• Assistance from their medical home

NYLN Survey, 2002
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Section TwoTransitions From Policy to Practice
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American Academy of PediatricsPolicy
Recommendations

• 1. Ensure all YSHCN have an identified health
  care professional who attends to the unique
  challenges of transition.
• 2. Identify knowledge and skills required to
  provide developmentally appropriate transition
  services, and include them in training for
  primary care residents and physicians.
• 3. Maintain a portable, accessible, and current
  medical summary.

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Policy Recommendations (contd)

• 4. Create a written transition plan by age 14
  with young person and family. Annually update.
• 5. Guidelines for primary and preventive care
  should be applied to all adolescents and young
  adults.
• 6. Ensure affordable, continuous health insurance
  throughout adolescence and adulthood, including
• Health care transition planning
• Care coordination

 
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Pediatric and Adult Medicine Really Are Different

• Pediatrics
• Family focus
• - Developmental focus
• - High level of nurse staff involvement
  
• Interdisciplinary
• Involves parental direction and consent

Eiser C, Flynn M, Green E, et al. Coming of age
with diabetes patients views of a clinic for
under-25 year olds. Diabet Med. 1993 10285259
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Pediatric and Adult Medicine Really Are Different

• Adult Medicine
• Individual focus
• Focus on disease
• Multidisciplinary
• - Minimal involvement of nurse and staff
• Requires patient to be autonomous and to function
  independently

Eiser C, Flynn M, Green E, et al. Coming of age
with diabetes patients views of a clinic for
under-25 year olds. Diabet Med. 1993 10285259
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Practical Barriers to Health Care Transition

• Difficulty in letting go
• Limited access to adult providers
• Providers need to acquire new knowledge and
  skills to care for medically complex young adults
  with childhood onset conditions
• Patients and families may be challenged both
  clinically and interpersonally

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Straight Talk with a Doc
A Physicians Perspective Colleen Morris, M.D.
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From Policy to Practice Preventive Guidelines

• Follow approved guidelines
• - Bright Futures
• - Guidelines for Adolescent Preventive
  Services
• Schedule routine well-child visits
• Schedule periodic visits to manage chronic
  health/disability issues

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From Policy to Practice Portable Medical Summary

• Three types of medical summaries
• HRTW, portable medical summary, 1-page SAMPLE
• 3-fold, wallet-sized medical information summary
• Transitional care summary

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From Policy to Practice Transition Plan

• Adults with physical, mental and sensory
• limitations are at increased risk for obesity.

SOURCE Journal of the American Medical
Association
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From Policy to Practice Transition Plan

• Be Proactive!
• Exercise regularly
• Eat healthy foods

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From Policy to Practice Transition Plan

• Increasing responsibility for
• self-care and health
• YSHCN make your own medical appointments
• Figure out transportation to your appointments
• Take on more responsibility at homedo laundry
  once a week for the whole family

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From Policy to Practice Transition Plan
Individuals with Disabilities and Education
Act (IDEA) REQUIREMENTS

• - By age 14 must discuss transition
• service needs
• - By age 16 must plan for needed
• transition services

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Panel Discussion
The How Tos of writing health goals in
transition plans
- Melissa Pegg Transition Specialist, CCSD -
Cheryl Murphy President, Southern Nevada Chapter
of DBSA - Gillian Wells Transition Director,
Nevada PEP - Robin Renshaw Transition Specialist,
Nevada PEP
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Section Three The Importance of Advocacy
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Why Is Advocacy Important?

• Keeps the well-being of the child and family at
  the forefront
• Promotes change at the systems level
• Enhances the impact of individual efforts
• Works to overcome system barriers
• Highlights services that are available
• to the public

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Where Is Advocacy Needed?

• Advocacy should be a part of all aspects of care.
• Financial access, managed care Medicaid/SCHIP
  reimbursement supplemental assistance/programs
• Community school, respite, child care,
  transportation
• Psychosocial family, abuse/neglect, palliative
  care, foster care/adoption
• Legal guardianship, liability, do not
  resuscitate, consent, confidentiality

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Why Should a Physician/Allied Health Care
Provider Be an Advocate?

• Are keenly aware of the needs of CYSHCN and
  family
• Bring credibility
• Are generally seen as trustworthy
• Are seen most often as working on behalf of
  children
• Can see trends/effects of health care system
  changes and their impact on their patients and
  families

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How do Family Members/Caregivers Become
Advocates?

• Acknowledge that you are the best advocate for
  your child or youth
• Make contact with another family or a support
  group for assistance and to share information
• Learn all you can about the conditions of your
  child or youth

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How do Family Members/Caregivers Become
Advocates? (contd)

• Learn about the service systems available
• Keep records and notes store in one place
• Know your childs or youths health insurance
  plan
• Insist on being part of family-centered care from
  all providers

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How do Youth Become Self-Advocates?

• Acknowledge that you are the best advocate for
  yourself
• Make contact with another person with a special
  health care need or a support group for
  assistance and to share information
• Learn all you can about your conditions

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Section Four School-aged Children and Teens
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Youth are less interested in any transition
organized around medical issues and more
interested in a transition to financial and
social independence.
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Focus on Health Care for Tweens/Teens

• Focus on health promotion
• Involve youth in prevention of secondary
  disabilities
• Prevent self-destruction
• Adherence issues
• Risk taking (alcohol, sex, drugs)
• Unrecognized mental health issues

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Mental Health Concerns for YSHCN

• Under-identification because the condition
• Masks aberrant behavior
• Distorts the presentation of signs and symptoms
• Makes typical testing procedures difficult
• Significant adjustment difficulties, delay in
  social maturation, unnecessary dependency
• Prominent social isolation

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Focus on Self-care for Tweens/Teens

• Increase expectations for
• Communicating feelings and needs
• Providing interim history
• Developing plan of care
• Coordinating care
• Scheduling appointments that do not interfere
  with school

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Focus on Sexuality for Tweens/Teens

• Discuss the physical changes of puberty
• Talk about sexual health as you discuss overall
  health issues
• Discuss how to recognize, report, and/or prevent
  sexual violence
• Offer resources to build awareness on educated
  sexual behavior

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Transition Realities

• 57 unable to describe their disability or
  illness
• 50 of those taking medications could not explain
  why.

University of Illinois at Chicagos Division of
Specialized Care for Children
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Strategies for YSCHN

• Be sure you understand your medical needs and
  what your health insurance pays for
• Keep your medical information current, especially
  information that documents your disability
• Talk with your family and other people you trust
  about your legal rights when you turn 18 years
  old and discuss guardianship options

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Role Play
The Talk with Doc
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Section FiveFinancial Issues and Systems
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Financial Issues How It Is Affecting CYSHCN Care

• 14 say insurance does not cover needed services
• 12 say insurance does not allow family to see
  the provider they need

MCHB. NCHS. National Survey on Children with
Special Health Care Needs. 2002.
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Eligibility Enrollment Requirements for Financial
Assistance

• Age
• Disability
• Family income and assistance
• Processes for enrollment in programs
• Documentation for continued participation in
  programs
• Requirements for pre-approval and for treatments,
  procedures, and referral

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CYSHCN Financial Reality

• CYSHCN, 20 of the pediatric population, account
  for 80 of pediatric health care expenditures
• Annual cost of providing medical care to CYSHCN
• Hospitalization 61
• Specialists 14
• Durable medical equipment 5
• Primary care 5
• Other 15

Health Partners/Institute for Health and
Disability, 1997.
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Strategies for Maintaining Funding

• Reality of adult health care funding for
• young adults is complex
• Lack of job benefits with entry-level/part-time
  jobs
• SSI/Medicaid cutoff
• Age caps
• Two types of insurance to navigate public or
  private

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Strategies for Maintaining Funding (contd)

• Public
• Nevada Check Up
• SSI
• Medicaid
• State Title V CSHCN Program  

• Private
• Family plan
• YSHCN pays own premium
• - college student plan
• - employment
• - self-pay plan
• - HIWA
• - COBRA 

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Panel Discussion
Financing Health Care
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Section Six Mentoring and Support
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On-Going Support

• Student First
• A monthly support group for
• youth with special health care needs
• BEGINNING
• Saturday, February 25th
• 10am-Noon
• Childrens Therapy Center
• Physiotherapy
• 3530 E. Flamingo Rd., Suite 103
• 740-4200

Depression Bipolar Support Alliance Southern
Nevada A nonprofit organization that sponsors a
number of support groups for people with mental
health issues 255-4003 www.dbsa-southernnevada.o
rg
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National Resources for YSHCN

• KASA Youth Information,
• Training and Resource Center
• Informing youth about their rights, providing
  peer support and training, and changing systems
  to include youth
• KASA at Family Voices
• 2340 Alamo SE, Suite 102
• Alburquerque, NM 87106
• 773-338-5541
• www.fvkasa.org

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National Resources for YSHCN

• National Collaborative on
• Workforce and Disability for Youth
• strives to ensure that youth with disabilities
  are provided full access to high quality services
  in integrated settings in order to maximize their
  opportunities for employment and independent
  living.
• NCWD/Youth c/o Institute for Educational
  Leadership
• 4455 Connecticut Avenue, N.W., Suite 310,
• Washington, DC 20008www.ncwd-youth.info
• Toll Free 877-871-0744
• TTY Toll Free 877-871-0665

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National Resources for YSHCN

• Health Ready to Work
• Provides web based tools, resources and
  strategies that can be used by
• youth and their families, health care providers,
  and state and local
• agencies to achieve successful transition from
  pediatric to adult health care.
• http//www.hrtw.org
• info_at_hrtw.org

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Increasing the hope, confidence and
independence of people with disabilities and
chronic health conditions of all ages and their
circle of support through training, information,
emotional support and advocacy.Toll Free (866)
326-8437Las Vegas [phone] info_at_familytie
snv.org www.familytiesnv.org
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Thank You!Please fill out evaluations and turn
in before leaving!!CEU and participant
certificates available at the door.