Redefining Family Centered Care for Youth with Special Health Care Needs

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Re-defining Family Centered Care for Youth with
Special Health Care Needs

• Ceci Shapland, MSN
• Consultant
• HRTW National
• Resource Center

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• What Does Health Got to Do with Transition?

• Everything!

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HRTW Team
Title V Leadership Toni Wall, Kathy
Blomquist Medical Home Trans Dr. Rich
Antonelli
Dr.Patience White
Betty Presler Federal Policy
Patti Hackett Tom Gloss Family, Youth CC
Ceci Shapland Trish Thomas Interagency
Debbie Gilmer HRTW University Jon
Nelson
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HRTW website www.hrtw.org
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(No Transcript)
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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.

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Health Affects Everything!!

• Employment
• Housing
• School
• Community Living
• Recreation

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What is a successful transition?

• Youth are able to
• Access health services independently
• Know about their health condition
• Communicate their health care needs
• Self-manage their care
• Feel comfortable seeing the doctor alone

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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.

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Who are CYSHCN??

• Children and youth with special health care
  needs are 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.

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CYSHCN

9.4 million (13) lt18 www.cshcndata.org Title
V CYSHCN 963,634 (0-18) Virginia
Title V 7,303 (2003) SOURCE
Title V Block Grant FY 2006 Application
Most State Title V CSHCN Programs end at
age 18
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Good News! Celebrate!

• Over 90 of children with special health needs
  are living to adulthood and many are doing very
  well!!!!

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Bad News! 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

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Bad News! Areas to Improve

• Survey results continued
• 80 Lack referrals to adult health
  
  care providers
• 40 Use emergency care in 1 yr compared to 25 in
  typical young adults

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Federal Mandates

• Supreme Court decision - Olmstead (1999)
• Affirmed the right of individuals with
  disabilities to live in the community rather than
  in institutions whenever possible.
• Full integration - a reality for people with
  disabilities
• means not only changing existing practices
  that favor institutionalization over
  community-based treatment, but also providing the
  affordable housing, transportation, and access to
  state and local government programs and
• activities that make community life possible.

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Federal Mandates

• The Presidents New Freedom Initiative (2001)
• Responsibility given to HRSA for developing
  and implementing a community-based service system

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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 adulthood

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Surgeon Generals Call for Action Improve the
Health and Wellness of Persons with Disabilities
2005

• 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

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Surgeon Generals 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.
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State Title V CSHCN Block Grant

• National Performance Measures
• To help states develop effective mechanisms to
  achieve a system of care for all children with
  special health needs and their families by 2010,
  six national performance measures (NPM) will
  serve as a guide to states in meeting this goal.
• SOURCE BLOCK GRANT GUIDANCE
• New Performance Measures
  See p.43 ftp//ftp.hrsa.gov/mchb/
  blockgrant/bgguideforms.pdf

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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

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Title V Block Grant National Performance
Measure 6

• Transition to Adulthood
• Youth with special health care needs
• will receive the services necessary to make
  transitions to all aspects of adult life,
  including adult health care, work, and
  independence. (2002)

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Transition Screening
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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

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Screen for Life Areas

• How does health affect
• Employment
• Leisure, Recreation
• Community transportation, housing, activities
• Higher Education or Training

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Screen for All Health Needs

• Hygiene
• Nutrition (Stamina)
• Exercise
• Sexuality Issues
• Mental Health
• Routine (Immunizations, Blood-work, Vision, etc.)

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Transition Youth Family Participation
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Health ..Work (starts early)

• Home
• Chores - Role in the family
• Community Experiences
• School
• Attendance (on time and wellness)
• Real Skills for the real world
• Doctors Office
• Health staying well for longer periods
• Maximize stamina, mobility, communication

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Health ..Work (starts early)

• Aspirations Expectations
• Youth Involvement Increasing overtime
• Informed Decision Making Voice heard
• Possibilities Opportunity to try

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Transition Issues for Families

• Starting Early
• At diagnosis
• Sense of future
• Raising Expectations
• Assisting in care
• Talking with the doctor

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Issues for Families Letting Go

• Launching Adults
• Practice, practice, practice
• Supports-health surrogate
• Guardianship, conservatorship

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Issues for Families Be Creative

• Creative problem-solving
• Define concerns
• Include child/youth in discussion
• Age of consent-a surprise!
• Portable Health Summary

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Changing Roles-Becoming a Coach

• What does that mean?
• Youth are creative, resourceful and whole!
• New skills-listening(3 levels), open ended
  questions, changing perspective

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Nurturing Independence

• For all youth
• Do not solve all the problems, arguments, fights,
  etc.
• Teach negotiation skills

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Challenge for Parents

• How to support health of their youth and the need
  for growing autonomy
• Negotiate and compromise regularly!

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Steps to Promote Transition

• Talk with youth about views on how much control
  over health
• Provide opportunities to state feelings and be
  respected
• Teach health care skills at an early age
• Develop health care routines

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Steps (cont.)

• Learn more about youth development
• Provide positive feedback
• Notice language-we
• Promote age appropriate health care
• Practice decision making and problem solving
  skills

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New Brain Research

• Use it or lose it!
• Practice, practice, practice

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Steps (cont.)

• Provide opportunity for youth to co-sign
  treatment and surgery forms.
• Assist in the development or identify a peer
  group.
• Take time to learn why youth is not following a
  treatment plan
• Provide opportunities to make mistakes

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Steps (cont.)

• Research and provide information on resources and
  supports for living health and more
  independently.
• Promote a partnership with the doctor and youth.

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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.

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Issues for Youth Healthy Informed

• Informed decision-making
• Teach about special health needs, possible
  changes, emergency plans
• Learn about general health
• Use resources to support learning-school and IEP

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Issues for Youth Adult Systems

• Health Care Insurance
• Family plan, Medicaid, new employee plan-aging
  out-what are the rules?
• Adult care-a different culture
• Identifying and planning the transition to adult
  care doctor

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TRANSITION TEAM The Players
Youth
Community Resources
Family
Health Professionals
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Youth Centric Health Care

• Youth, family physician work together to plan
  for youth to be in charge of his own health
  (youth is the constant in his/her own life)
• Youth is the team leader (collaboration and
  partnership in care)

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Youth Centric Health Care

• Youth has knowledge of condition (sharing
  unbiased and complete info)
• Youth makes decisions on health care
• Physicians speak to youth PRIVATELY (meets
  developmental needs)

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Youth Centric Health Care

• Design a flexible, accessible, responsive Youth
  friendly atmosphere (Accessibility- physical,
  appointment times, etc.)
• Promote youth to youth mentoring and support
  (consumer to consumer support)

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Mentoring

• Important strategy in a positive transition
• Peer mentoring-better adherence to health care
  regimen
• Enhances physical and mental health

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Youth are Talking Are We Listening?

• Experiences that were most important
• learning to stay healthy
• getting health insurance
• SOURCE National Youth Leadership Network
• Survey-2001, 300 youth leaders
  disabilities

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Youth are Talking Health Concerns

• Survey of 1300 YOUTH with SHCN and disabilities
• Main concerns for health
• what to do in an emergency,
• 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

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Wisdom from Youth

• Learn everything about your condition, future
  needs and potential problems
• Learn self care
• Establish a relationship with a health care
  provider

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Self Advocacy Building Skills

• Knowing your health needs
• Asking for what you need
• Talking with the doctor
• choosing a doctor
• preparing for visits
• Knowing the law
• Problem solving skills

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Transition .Medical Home

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What is a Medical Home? Its not a building,
house or hospital

• Medical Home is an approach..
• providing comprehensive primary care
• - accessible
• - continuous
• - comprehensive
• - family centered
• - coordinated
• - compassionate
• - culturally effective
• The National Center of Medical Home Initiatives
  www.medicalhomeinfo.org

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Consensus Statement Health Care Transition
(Sept. 2001)

• American Academy of Pediatrics
• American Academy of Family Physicians
• American College of Physicians-American Society
  of Internal Medicine
• CONSENSUS STATEMENT calls on physicians to
• 1. Understand the rationale for transition
• from child-oriented health care
• 2. Have the knowledge and skills to facilitate
• that process
• 3. Know if, how, and when transfer of care
• is indicated
• (Pediatrics 2002110 (suppl) 1304-1306)

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Consensus Statement Health Care Transition
(Sept. 2001)

• 4. Maintain an up-to-date portable medical
  summary
• 5. Create a written health care transition plan
  by age 14 what services, who provides, how
  financed
• (Pediatrics 2002110 (suppl) 1304-1306)

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YOUTH are Informed

• The physicians prime responsibility is the
  medical management of the young persons disease,
  but the outcome of this medical intervention is
  irrelevant unless the young person acquires the
  required skills to manage the disease and
  his/her life.
• Ansell BM Chamberlain MA. Clinical Rheum.
  1998 12363-374

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Positive Youth Development

• Youth have the right to be empowered, educated
  and given a decision making role in their care,
  as well as policy and procedures governing all
  youth in the community.
• From the National Center for Children and
  Poverty, Columbia University

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Positive Youth Development

• Promotes
• self esteem
• self confidence
• engages youth in the community
• better chance for successful transition

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Positive Youth Development

• Perceived in a positive light, not something to
  be fixed!
• Healthy relationship with adults and peers
• Opportunity for skill practice and leadership
• Opportunity for civic engagement

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Care Coordination

• Nurses seen by youth and families as the person
  to be care coordinator
• Those with care coordinator-more successful
  planning

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Duties of the Care Coordinator

• Encourage families to have the child go away and
  learn care
• Identify assistive technology
• Provide specific referrals
• Provide skill development
• Educate about self care
• Have high expectations

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Motivational Interviewing

• Reflective listening
• Rephrasing
• Paraphrasing

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Relationship with physician

• Youth want to be asked about their social school
  life.
• Adult care only concern is long term
  complications, exercise and strict control
• (For youth with diabetes)

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Shared Decision Making

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Challenge for Health Care Providers

• To advocate for young person while including
  parents
• Steps
• Actively involve youth in consultations
• Build collaborative relationship with youth so
  parents feel they can step back

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Health Care Transition Partners

• Youth and their families are the leaders!
• Providers Physicians-Pediatric, Family Practice,
  Adult physicians, Alternative Medicine
  Practitioners

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Community Transition Partners

• School
• Individual Education Plan (IEP)
• 504 Plan
• Health Transition Goals and Objectives
• Vocational Rehabilitation
• Community Resources

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Pediatric vs Adult Care

• Youth want honesty, respect confidentiality,
  competence
• Adults want caring manner, good communication,
  competence

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Solution?

• Dedicated young adult service that bridges the gap

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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

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Transition . Health Care

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Transition Insurance

• No Health Insurance
• 2 out of 5 college graduates (first year after
  grad)
• 1/2 of HS grads who dont go to college
• 40 age 19 - 29 - uninsured during the year
• 2x rate for adults ages 30-64
• SOURCE Commonwealth Fund 2003

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PUBLIC Medicaid

• MAINTAIN MEDICAID
• - Passed SSI Re-determination - continue
  benefits.
• DROP FROM MEDICAID
• - Former childhood SSI recipient at age 18 did
  not qualify
• under SSI re-determination and loses benefits
  (income too
• high or does not meet disability criteria.)
• NEW to MEDICAID
• - Child did not qualify for SSI under 18 due to
  family income.
• Age 18 may qualify for SSI and Medicaid as an
  adult single head of household.

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PUBLIC SSI/Medicaid Loop Hole

• NOT APPROVED - PROVISION TO CONTINUE RECEIVING
  SSI BENEFITS
• SECTION 301 - Individuals found ineligible during
  re-determination may continue to receive SSI
  benefits IF they began receiving state vocational
  rehabilitation agency services before their 18th
  birthday. Section 301 allows the young adult to
  retain benefits while he/she participates in
  approved voc rehab program or IEP.(7/2005)
• http//policy.ssa.gov/poms.nsf/lnx/0412515001

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Medicaid while Working

• WORKING - Continued Medicaid Eligibility
• Section 1619(b)
• - still meets SSI criteria,
• - needs Medicaid in order to work and
• - gross earned income is insufficient to pay for
  other public supports.
• MEDICAID BUY-IN via TICKET TO WORK
• - Worker could opt to buy-in and receive Medicaid
  benefits. Program is too new to assess if states
  are providing full benefit packages and at what
  level of sliding fee.

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PRIVATE Family, Employer or Solo

• MAINTAIN BENEFITS via FAMILY PLAN
• Adult Disabled Dependent Child
• Student Status
• Pays for health care benefits plan through
• College - student plan
• Employed - group plan
• Self-pay single plan
• Ticket to Work (Medicaid Buy-in)
• COBRA

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Transition to Adulthood
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Transition to Adulthood is successful when ..

• Youth Leaders are partners in policy review and
  development
• Youth have
• PARTNERS - Voice and are heard in their own
  health care decisions
• QUALITY - Medical care that meets their needs and
  developmental issues
• CARE - Insurance that is not in jeopardy due to
  getting older or working

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Effects of a well planned transition

• Improved disease control
• Vocational readiness

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Need Better Research

• Research on transition focuses only on one aspect
  of a program.

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Resources

• Paving the Way to Work-A Guide to Career Focused
  Mentoring for Youth with Disabilities
  http//ent.groundspring.org
• McDonagh, J. E. Growing up Ready for Emerging
  Adulthood. Presentation for Department of Health,
  the Royal Colleges, March 23, 2006.
• http//217.35.77.12/archive/England/papers/health/
  pdfs/o4137428.pdf

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Resources

• Sawyer, S.M. and Aroni, RA. Self Management in
  adolescents with chronic illness. What does it
  mean and how can it be achieved? MJA, 2005 183
  (80 405-409
• Von Korff, M., Grumen, J. and Schaefer, L. et al.
  Collaboration management of chronic illness.
  Annals of Internal Medicine. 1997, 127 1097-1102

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Resources

• www.brightfutures.org
• www.familyvillage.wisc.edu
• www.kidshealth.org
• ww.aap.org
• www.search-institute.org

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cecishapland_at_hrtw.org

• Ceci Shapland, MSN
• Consultant
• HRTW National
• Resource Center