Medical Home Model for Health Care Transition

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• Medical Home Model for Health Care Transition

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Transition for Youth with Special Health Care
Needs (YSHCN)

• The purposeful, planned movement of adolescents
  and young adults with chronic physical and
  medical conditions from child-centered to
  adult-oriented health care system.
• Society for Adolescent Medicine. J Adolesc
  Health. 1993 14570-576
• Healthy People 2010 Objective is to ensure that
  YSHCN receive the services necessary to
  transition to all aspects of adulthood, including
  from pediatric to adult health care, from school
  to employment and to independence.
• US DHHS. www.hhs.gov/newfreedom/final.

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• A Collaboration between
• University of Florida, College of Medicine
• Departments of
• Pediatrics
• and
• Internal Medicine

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Why is Transition Necessary?
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Sickle Cell Disease



Platt OS, Brambilla DJ, Rosse WF, et al.
Mortality in sickle cell disease. Life expectancy
and risk factors for early death. N Engl J Med
19943301639-44.
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Cystic Fibrosis



Adults with cystic fibrosis now account for 40
percent of the CF population. REF CF
Foundation Website (accessed 5/15/06)
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Spina Bifida



Sawin, K. Factors Associated with Quality of Life
in Adolescents with Spina Bifida. Journal of
Holistic Nursing, 200220279-304.
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Youth with Special Health Care Needs(YSHCN)

• 12-13 of youth have a special health care need.
• 90 of YSHCN reach their 21st birthday
• Nationally 500,000 YSHCN turn 18 each year!

Scal P, et. Al. J Adolesc Health
199924259. CDC/NCHS. SLAITS survey.
www.cdc.gov/nchs/about/major/slaits/cshcn.htm.
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Youth with Significant Health or Developmental
Conditions

• 4-5 of adolescents and young adults
• Serious physical health conditions
• Developmental Disabilities
• Mental health conditions
• NE Florida 4000 across the Transition age
  range

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Are we doing a good job with health care
transition?

• Pediatric Side
• National Survey of YSHCN
• 50 of YSHCN have discussed transition with their
  pediatricians
• 15 have received some plan for transition to
  adult services from their pediatrician
• Not associated with SES, insurance!
• Improved likelihood if have a Medical Home

Lotstein et. Al. Pediatrics 20051151562.
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Are we doing a good job with health care
transition?

• Adult Side
• 1,000,000 Adults in the US have congenital heart
  disease
• 50 are at risk for re-operation, arrhythmias,
  premature mortality and need f/u in Congenital
  Adult Heart Center
• Canadian cohort study f/u of 400 CHD patients
• 47 had gt1 visit in CAHC w/i 1-2 years
• Factors predicting transition
• Positive disease severity, documented process
  of transition older age at last visit patient
  beliefs, attending appointments on their own
• Negative use of drugs, binge drinking

Reid GJ, Irvine MJ, et. Al. Pediatrics
2004113197-205
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What are the Barriers and Challenges to
Successful Transition?
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When we left pediatric care it was as if someone
flipped the switch and turned the lights off.
--parent of child with cerebral palsy
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Barriers to Transition

• Termination of pediatric services with poor
  hand-off
• Preparation, referrals or hand-off
• Unprepared adult health care system
• Access to adult specialistswaits, geography
• clinical management of childhood disorders
• YSHCN/families not prepared for transition
• Letting go
• Organizing care
• Developmental Level of YSHCN
• Limited Access to support resources
• care coordination
• Loss of SSI income

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Culture of Pediatric vs. Adult Care

• Pediatric Care
• Relational
• Developmental
• Family Centered 1 to many
• Social support/ nurturing
• Specialty focused or Interdisciplinary (care
  coordination)

• Adult Care
• Cognitive
• Static/declining function
• Patient Centered-- 11 communication
• Knowledge Empowerment
• Primary Care focused or Multidisciplinary

Rosen D. J Adolesc Health 19951710
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Insurance Barriers

• Young adults have the lowest insurance rate of
  any age group 064 years
• 37.7 aged 1824 years were uninsured during the
  past year
• Higher risk Poor, minority, low educational
  attainment
• Reasons for loss of insurance
• Ineligibility for parents insurance
• Public insurance ends at 18, 19 or 22
• SSI rules change at 18
• any gainful activity vs. causes marked and
  severe functional limitations

Callahan ST, Cooper WO. Pediatrics 200511688
95
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Trajectories for Transition

• Youth with common but serious physical health
  problems
• Diabetes, sickle cell disease, asthma
• Congenital health problems
• Cerebral palsy, spina bifida, genetic conditions,
  cystic fibrosis
• Developmental Disabilities/Intellectual
  Disabilities

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Developmental Tasks of Adolescence

• Separation from parents
• Establish relationships outside the family
• Develop social skills
• Acceptance of responsibility for behaviors
• Acceptance and incorporation of feedback
• Consolidation of identity and self-image
• Establish adult sexual role
• Develop vocational/career goals/identity

Hallum et. Al Curr. Prob. Ped. 19952512-50.
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Supporting Health Care Transition . . .
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Care Model for Chronic Condition Management
Supportive, Integrated Community
Informed, Activated Patient/Family
Prepared, Proactive Practice Team
Prepared, Proactive Practice Team
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Patient/Family GoalsFor Transition

• Manage their own health
  health care
• Disease self-management
• Preventive health care Sexuality
• Appropriately access adult primary care,
  specialists, therapies, equipment, supplies, etc.
  
• Know how to get and keep health insurance
• Plan implement education/vocational goals

Scal, et. Al. Pediatrics 2002
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JaxHATS A Medical Home During Transition

• Adolescent Primary Care Services
• Primary Care Medical Home
• Wellness/Preventive Services
• Sexuality
• Care Coordination/Education
• Medical Referrals
• Specialty Care
• Mental Health
• Medications, Supplies, Equipment
• Transition Support
• Independence and self management.
• Educational/Vocational
• planning

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Common Diagnoses of Patients Enrolled in JaxHATS
(as of 1/1/07)

• Patients
• Intellectual Disability 34
• Cerebral palsy 27
• Mental Health 26
• Seizure Disorder 20
• Insulin Dependent Diabetes 17
• Asthma 12
• Sickle Cell Disease 12
• Recovering From Cancer 8
• Cardiac Disease 7
• Endocrine Disorders 6
• Spina Bifida 6
• S/P Transplant 4

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Multidisciplinary Intake
Process

• Internist and Pediatrician
• Evaluate patient
• Determine medical needs
• Initiate referrals.
• Nurse Coordinator
• Coordinates referrals and diagnostic procedures
• Assists with follow-up visits.
• Program Manager
• Assists youth with economic, psychosocial,
  educational and vocational needs.

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acts as Liaison

• Between primary care and specialty care
• Between pediatric specialists and adult
  specialists
• To help secure health insurance or other
  financial benefits
• To link clients to
• Educational transition services
• Vocational Services
• Independent living

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Preparing the Adolescent Family for Transition

• Transition Readiness Tool, Clinical Assessment
  and Plan of Care completed with youth and family.
  
• Educate on disease self management.
• Assist youth to independently manage health care
  needs.
• Promote adolescents participation in
  decision-making

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Transition-Readiness Assessment

• Common challenges but different stages of
  readiness to assume these responsibilities
• We conceptualize transition as behavior change or
  acquisition of new skills in three key areas
• Disease Self Management
• Independent Health Care Utilization
• Progress toward life goals in education/vocation,
  independent living

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Stages of Change Model as a Way to Assess
Transition Readiness

• Developed by Prochaska and DiClemente for the
  clinical treatment of addictive behaviors
• Applied in
• smoking cessation,
• HIV treatment adherence, HIV preventive
  behaviors,
• dietary management,
• other health-promoting behaviors
• The Stages of Change Model has lead to innovative
  clinical interventions, including motivational
  interviewing

Prochaska JO, DiClemente CC. Stages of change in
the modification of problem behaviors. Prog
Behav Modif. 199228183-218
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Care Model for Child Health in a Medical Home
Supportive, Integrated Community
Informed, Activated Patient/Family
Prepared, Proactive Practice Team
Prepared, Proactive Practice Team
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INTERVENTION PROCESS INTERMEDIATE
LONG-TERM MEASURES OUTCOMES OUTCOMES
Transition Program

• Client Focused
• Client Assessment of health care needs,
  educational, vocational, living goals
• Education Self-directed learning
• Comprehensive Primary Care
• Specialty Care
• Care Coordination
• Patient Family Advocacy

• Client Readiness for Transition
• (Stages of Change)
• Access To Medical Care
• Keep a Medical History
• Communicating With Your Doctor, Nurse Or Clinic
  Staff
• Managing Medications
• Managing Medical Equipment/Supplies
• Managing Health Insurance
• Managing Self Health Care
• Managing Job Or School
• Managing Daily Living Activities
• Managing Personal Safety
• Using Community Resources

• Health Care
• Utilization
• Independent reliable use of primary and
  specialty care
• Reduced ER use
• Disease Self- Management
• Disease Understanding
• Compliance
• Disease control
• Self-efficacy
• Education/ Vocation
• Staying in school
• Working toward goals
• Independent Living
• Working toward goals

• Optimal Health Outcomes and
• Quality of Life
• Functional status
• Health-related Quality of Life
• Disease specific outcomes
• Achievement of Academic Goals.
• Achievement of Vocational Goals
• Achievement of Independent Living Goals

• Pediatric Health Care System
• Early Identification, assessment, education,
  preparation
• Coordinated Referral Hand Off
• Adult Health Care System
• Competent
• Accessible
• Comprehensive
• Continuous
• Educational/Vocational/Social
• Adequate Accommodations
• Adequate Supports

• System Focused
• Training/Advocacy with Pediatric Adult
  Providers
• Advocacy in Insurance System
• Advocacy in the adult HC system
• Advocacy in Education/Vocation Systems

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• http//www.jaxhats.ufl.edu

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Supporting JAX HATS

• A unique model for a medical home
• Local legislative interest champion for
  individuals with disabilities
• Developmental Disabilities Planning Council
  interest
• Imperative for the Title V CSHCN Program CMS
  Network

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Climate

• Champions BUT
• Several years of reduced revenues
• Inclination to provide non-recurring funds for
  pilots
• Wait and see posture
• Advocacy first garnered pilot dollars
  (non-recurring)

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Advocacy Attempts

• Create legislation for a statewide program
• Legislative champion
• Advocacy support
• Create on-going funding source for statewide
  program
• Competing demands
• Medicaid reform
• Cover more kids
• Education

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Policy Mishaps

• Questions about creating program that will
  require future funding
• Short-term concerns about models
• Interesting parental concerns
• Revenue picture changed dramatically
• Result Non-recurring funds for one pilot

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Future Attempts

• Develop legislation that ask for a plan with
  several models
• Continue to advocate for continuation of pilot
  funding

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Thank You!