The Medical Home: A Model of Integrated Care to Reduce Health Disparities for CYSHCN

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The Medical Home A Model of Integrated Care to
Reduce Health Disparities for CYSHCN
Kynna Wright-Volel, PhD, RN, MPH, CPNP Assistant
Professor
Robert Wood Johnson Nurse Faculty Scholar
UCLA School of Nursing Voicing Our
Visions 2008 Minority Health Conference
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Learning Objectives

• Define the medical home concept.
• Define children and youth with special health
  care needs (CYSHCN).
• Understand the reality of providing care for
  CYSHCN from all provider perspectives
  physicians, allied health care professionals, and
  family members.
• Define the common elements of medical home, and
  assess whether they have been incorporated into
  personal practices.
• Discuss strategies for chronic care management
  within the primary care office setting.

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CYSHCN Definition

• 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.

Maternal and Child Health Bureau, 1995
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Disparities CYSHCN Reality

• Approximately 40,000 CYSHCN in the United States,
  or 13 of children, have a special health care
  need
• Approximately 1 out of 5 homes in the United
  States has a child or youth with special health
  care needs
• Note This does not include children and youth
  at risk for a chronic condition.

MCHB/NCHS. National Survey of Children with
Special Health Care Needs. 2002
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Disparities CYSHCN Financial Reality

• CYSHCN 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
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Disparities CYSHCN Reality for Families

• 39.5 indicate their childs or youths condition
  impacts familys financial situation
• 13.5 say they spend 11 hours/wk coordinating
  care for their child or youth
• 24.9 indicate families cut back on work due to
  childs or youths condition
• 28.5 indicate families stop working due to
  childs or youths condition

MCHB/NCHS. National Survey of Children with
Special Health Care Needs. 2002
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What Is NOT a Medical Home?

• Building
• House
• Hospital

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What Is a Medical Home?

• An approach to providing health care services in
  a high-quality, comprehensive, and cost-effective
  manner
• Provision of care through a primary care
  physician through partnership with other allied
  health care professionals and the family
• Acts in CYSHCNs best interest to achieve maximum
  family potential

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Who Is Part of a Medical Home?

• Primary care physician/PCP
• Allied health care professionals
• Family
• Child/youth
• Familys community
• Pediatric office staff
• If necessary, pediatric subspecialists

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Benefits of a Medical Home

• Increased patient and family satisfaction
• Establishment of a forum for problem solving
• Improved coordination of care
• Enhanced efficiency for children, youth, and
  families
• Efficient use of limited resources
• Increased professional satisfaction
• Increased wellness resulting from comprehensive
  care

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Barriers to Providing Medical Homes

• Pediatric primary care system is designed
• For the 80 of children who DO NOT have special
  health care needs
• To provide preventive care services and acute
  illness management
• To support single service encounter

Cooley WC. Developing primary care medical homes
for CSHCN. Presented at Institute for Leaders in
State Title V CSCHN Programs May 19, 2003
Baltimore, MD
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Medical Home Common Elements

• Accessible
• Family-centered
• Continuous
• Comprehensive
• Coordinated
• Compassionate
• Culturally effective

Care that is
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Accessible

• Personally
• Family/youth are able to speak directly to the
  PCP when needed.
• The practice is physically accessible and meets
• American with Disabilities Act requirements.

• Geographically
• Care is provided in the CYSHCNs community.
• Practice is accessible by public transportation,
  where available.

• Financially
• All insurance, including Medicaid, is accepted.
• Changes in insurance are accommodated.

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Family-Centered

• The medical home PCP is knowledgeable about the
  CYSHCN and family and their needs.
• Mutual responsibility and trust exists between
  the patient, family, and the medical home PCP.
• The family is recognized as the principal
  caregiver and center of strength and support for
  the child, as well as the expert.
• Clear, unbiased, and complete information and
  options are shared on an ongoing basis with the
  family.
• Families and youth are supported to play a
  central role in care coordination and share
  responsibility in decision making.

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Continuous

• The same primary pediatric health care
  professionals are available from infancy through
  adolescence and young adulthood.
• Assistance with transitions, in the form of
  developmentally appropriate health assessments
  and counseling, is available to the CYSHCN and
  family.
• The medical home PCP participates to the fullest
  extent allowed in care and discharge planning
  when the child is hospitalized or care is
  provided at another facility or by another
  provider.

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Comprehensive

• Care is delivered or directed by a well-trained
  integrated team who are able to manage and
  facilitate essentially all aspects of care.
• Ambulatory and inpatient care for ongoing and
  acute illnesses is ensured, 24 hours a day, 7
  days a week, 52 weeks a year.
• Extra time for an office visit is scheduled for
  CYSHCN, when indicated.

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Comprehensive (contd)

• Preventive, primary, and tertiary care needs are
  addressed.
• The CYSHCNs and familys medical, educational,
  developmental, psychosocial, other service
  needs are identified and addressed.
• The PCP and health team advocates for the child
  or youth and family in obtaining comprehensive
  care.
• Information is made available about private
  insurance and public resources.

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Coordinated

• A plan of care is developed by the PCP, CYSHCN,
  and family and is shared with other providers
  involved with the care of the patient.
•  
• Care among multiple providers is coordinated
  through the medical home.
• A central record or database containing all
  pertinent medical information, including
  hospitalizations and specialty care, is
  maintained at the practice. The record is
  accessible, but confidentiality is preserved.

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Coordinated (contd)

• The medical home PCP shares information among the
  CYSHCN, family, and consultant provides specific
  reason for referral and assists the family and
  CYSHCN in communicating clinical issues.
•  
• Families are linked to support and advocacy
  groups, parent-to-parent groups, and other family
  resources.
• The medical home PCP evaluates and interprets the
  consultants recommendations for the CYSHCN and
  family and, in consultation with them and sub-
  specialists, implements recommendations that are
  indicated and appropriate.

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Compassionate

• Concern for the well-being of the CYSHCN and
  family is expressed and demonstrated in verbal
  and nonverbal interactions.
• Efforts are made to understand and empathize with
  the feelings and perspectives of the family as
  well as the CYSHCN.

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Culturally Effective

• The CYSHCNs and familys cultural background,
  including beliefs, rituals, and customs, are
  recognized, valued, respected, and incorporated
  into the care plan.
• All efforts are made to ensure that the CYSHCN
  and family understand the results of the medical
  encounter and the care plan, including the
  provision of professional translators or
  interpreters, as needed.
• Written materials are provided in the familys
  primary language.

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Comprehensive, Coordinated, Collaborative
Care
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Section One Why Provide Comprehensive,
Coordinated, Collaborative Care?
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Why is comprehensive care Important?

• CYSHCN and their families/caregivers typically
  have multiple needs

• - Medical and health
• - Developmental and educational -
  Psychosocial
• Financial
• Family support service

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How is care coordination a part of comprehensive
care?

• Physicians cant do it all
• Not much training
• Not much time

• Families may have unmet needs
• Information, coordination of services
• Unvoiced needs
• Needs may be more than physician perceives

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Goals of Care Coordination

• To promote the well-being of families and CYSCHN
  through

- Information and referral
- Consultation
- Training
- Outreach
- Collaboration
- Service coordination

• Optimization of insurance and public benefits

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Care Coordination The Medical Home-
Physician/PCPs Role

• Gathering information, triage medical
  non-medical in-between
• Interpret medical information integrate it all
  into care plan
• Teach CYSHCN and families
• Learn from CYSHCN and families
• Mediate any potential conflicts

Donati, B Passerello, T Stille C. Coordination
of Care in the Medical Home. Presented at
National Association of Pediatric Home and
Community Health Conference October 3, 2003
Mystic, CT.
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Care Coordination The Medical Home- Nurse
Practitioner and the Nurses Role

• Nurse Practitioner
• Assessment
• Case Manager (Care Coordinator)
• Assists with prescriptions
• Education Coordinator
• Nurses
• Intake
• Screenings
• Health education

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Care Coordination The Medical Home- The Social
Workers Role

• Assists with socioeconomic needs
• Care Coordinator
• children with developmental needs
• children in social welfare system
• Community Liaison

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Care Coordination What does it look like?

• Be available (flexible hours, evening hours, and
  weekend hours)
• Consider transportation needs and options for
  families seeking care
• Eliminate financial barriers to the greatest
  extent possible (flexible payment options, assist
  families to apply for services such as Medicaid,
  SSI, Title V)
• Use community-based care coordination services to
  help families gain access to needed
  community-based services

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Section Two How Do You Provide Comprehensive
Chronic Care Management?
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Chronic Care Management (CCM) 6 actions

• Proactive decision to provide CCM to identified
  CYSHCN
• Provision of care intertwines CCM with other
  areas of primary care services
• Continuous communication with family
• Establishes necessary procedures in the primary
  care office
• Initiates continuous CCM
• Develops and maintains collaborative
  relationships among the CYSHCNs community
  agencies and providers

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Chronic Care Management Making the decision

• A primary care office staff should acknowledge
  the need for CCM strategies when a child/youth s
  health condition meets the following criteria

• significantly impacts daily living and family
  life
• impacts school performance
• impacts development
• involves on-going specialty care
• involves several providers and agencies
• causes new predicament/ emergency

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Chronic Care Management Creating a plan

• Developed in concert with the PCP allied health
  practitioners family CYSHCN (if developmentally
  appropriate) care coordinator (if appropriate)
• Addresses goals concerns interventions
  services referral contacts for medical and
  non-medical needs
• Includes medical information visit schedules
  communication strategies other agencies services
• Continuously updated and assessed
• Family/CYSHCN are provided with copies of care
  plan

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Chronic Care Management The providers role
with the family/CYSHCN

• Communicate office procedures to the family/
  CYSHCN
• Discuss assess what family/CYSHCN support
  resources are available/needed
• Identify roles and expectations for all
• Discuss time lines and possible agendas for
  provision of care

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Chronic Care Management The Familys/ CYSHCNs
Role

• Act as a partner
• Communicate directly and
• honestly with providers
• Responsibly manage care notebooks to assist in
  communicating needs to provider(s)
• Bring notebook to provider appointments
• Continuously assess care plan and its integration
  into life- activities

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Chronic Care Management Putting the plan to
work

• Assess the care plan
• Monitor involvement of specialists
• If a service gap or conflict is identified,
  review revise plan
• Use direct communication strategies between
  physician and family/ CYSHCN

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Chronic Care Management Co-Management Between
PCP and Specialists

• Institute of Medicine (IOM) and AAP have
  identified PCP-specialist communication as
  important element in the medical home
• Specialists communicate assessment results to 51
  of PCPs
• Specialists outline co-management of CYSHCN care
  plan in only 31 of cases

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Co-Management Between PCP and Specialists
Barriers

• Timeliness of communication
• Telephone difficulties
• Specialists referring to other specialists
  without PCP involvement
• Families seen as central method of communicating
  between providers

Stille CJ, Primack WA, Savageau JA.
Generalist-subspecialist communication for
children with chronic conditions a regional
physician survey. Pediatr.2003 112 1314-1320.
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Co-Management Between PCP and Specialists When
communication is essential

• PCP and family make initial decision to refer
• Specialist has conducted assessment and outlines
  plan for diagnosis/ treatment
• Follow-up care by either provider is significant
  to managed care plan

Stille CJ, Primack WA, Savageau JA.
Generalist-subspecialist communication for
children with chronic conditions a regional
physician survey. Pediatr.2003 112 1314-1320.
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Co-Management Between PCP and Specialists
Possible strategies

• Send a referral letter and supporting materials
  from PCP prior to specialist consultation
• Create a list of providers being seen by each
  CYSHCN to note who PCP should be in communication
  with
• Establish common procedures for all providers to
  use when email is frequent medium to communicate
• Identify strategies for specialists to educate
  PCP on certain chronic conditions

Stille CJ, Primack WA, Savageau JA.
Generalist-subspecialist communication for
children with chronic conditions a regional
physician survey. Pediatr.2003 112 1314-1320.
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Section Three How Do You Provide Coordinated and
Comprehensive Care Within the Community?
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Barriers to Accessing Community-Based Services

• Fragmented and categorical service systems
• Service systems and health care systems are often
  not linked
• Different systems use different terminology
• Service systems are often geographically
  dispersed, raising time and transportation
  challenges

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Advantages of Community-Based Care for Providers

• Provider is more likely to be familiar with a
  communitys health social issues
• Provider is able to promote the health and
  well-being of all children in a community
• Provider is more likely to be accessible to a
  communitys service systems

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Advantages of Community-Based Care for Families

• Minimize disruption of family life, work school
• Keeps family connected with community
• Supports family and community values
• Encourages healthy, stable relationships
• Builds upon familys strengths maximizes their
  decision-making power

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Providing Community-Based Care The Role of the
Integrated Team

• Establish office procedure for staying aware of
  community services
• As part of care coordinators responsibilities
• Collate local resource directory
• Establish regular meetings with community
  providers
• Assess needs of family and CYSHCN for community
  services

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Considerations for Provision of Comprehensive
Care Medical Issues

• Is there a recent and comprehensive medical
  history available?
• Has medical information been communicated in
  understandable terms?
• What procedures are in place for discharge
  planning?
• How does family feel about managing medical needs
  at home?
• Has care plan been reviewed by family? Medical
  contacts identified for family?

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Community Resources Agencies Medical

• Books, articles, disease-specific hand-outs
• Parent notebook of CYSHCNs condition
• MH/MR/DD/ Title V state programs
• Respite programs
• Child care facilities
• Extended care facilities
• Home care agencies
• Durable Medical Equipment companies

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Considerations for Provision of Comprehensive
Care Educational/ Vocational Issues

• How will the CYSHCN access educational system?
• Has an Individual Educational Plan or 504 been
  developed with guidance from medical home?
• How has the Individuals with Disability Education
  Act been incorporated into educational plans?

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Considerations for Provision of Comprehensive
Care Recreational Issues

• What are CYSHCN interests regarding
  exercise/recreation? Goals? Dreams?
• What are possible effects of medication on
  exercise/recreation?
• What is current level of fitness? How does that
  affect selection of which exercise/recreation to
  participate?
• Has medical home PCP been aware/involved in
  selection of exercise/recreation activity?

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Community Resources Agencies Recreational

• Special programs camps
• A communitys recreational department
• A communitys Special Education district
• Transportation
• Family resource centers

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Considerations for Provision of Comprehensive
Care Psychosocial Issues

• Has a detailed psychosocial history been taken?
• What is the impact of CYSHCNs condition on
  family?
• What is the impact of familys dynamics on
  CYSHCN?
• Has an Individual Family Support Plan been
  developed?
• What current support groups are being used by
  family/ CYSHCN?
• Does the family have social or other support

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Community Resources Agencies Psychosocial

• Mental health community clinics
• Behavioral health community clinics
• Mental health boards
• Family resource centers
• Foster care

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Considerations for Provision of Comprehensive
Care Financial Issues

• What are current payment options offered by your
  primary care practice?
• If there are changes in the familys/CYSHCNs
  insurance, are they accommodated?
• Is there an office system established to
  continuously provide financial resource
  information to families/CYSHCN?
• What is the medical homes understanding of
  different health plans financial resources?

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Community Resources Agencies Financial

• Medicaid and Medicare
• Title V CSCHN program
• SCHIP
• Utility programs
• Social service agencies
• SSI

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Summary

• It takes an integrated team to care for CYSHCN.
• The best way to do so is through comprehensive,
  collaborative, coordinated and culturally
  effective.
• The community plays a key role for providing
  services within a medical home.

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Acknowledgement

• American Academy of Pediatrics
• Family Voices
• Maternal and Child Health Bureau
• National Association of Childrens Hospitals and
  Related Institutions
• Shiners' Hospitals for Children