The Care of Children with Special Health Care Needs

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The Care of Children with Special Health Care
Needs

• Childrens Center for Restorative Care
• University of Texas Medical Branch at Galveston

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How Many Children?

• 31 of children have one or more chronic physical
  condition at some time during their youth
• 20 of children have developmental delays,
  behavioral and emotional problems, and/or
  learning disabilities
• 6 of children have a severe chronic illness

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Objectives

• Discuss the importance of medical homes for
  children with special needs.
• Explain the components of a medical home.
• Explain how the primary care provider can
  establish a medical home for a child with
  special needs.

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Objectives

• Describe the interdisciplinary approach to
  children with special needs.
• Describe the services offered by the Childrens
  Center for Restorative Care at the University of
  Texas Medical Branch at Galveston.

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What is the point of a medical home?

• To provide care that is family centered,
  community based, and coordinated

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Definition of a Medical Home

• Care that is

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

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Accessible

• Efforts made to meet the needs of all patients
  and families
• Care is provided in the childs community
• All insurance, including Medicaid, is accepted,
  and changes are accommodated

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Family Centered

• Family is the principle caregiver and the center
  of strength and support for the child
• Parents are the experts on their own children and
  are a source of essential information
• Unbiased and complete information is shared on an
  ongoing basis

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Continuous

• Same primary health care providers are available
  form infancy through adolescence
• Primary health care provider assists with
  transitions (hospital --gt home --gt school --gt job
  or independent living)

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Comprehensive

• Preventive and primary care are provided
• Primary providers have knowledge of the full
  range of child health problems
• Primary providers are knowledgeable about
  resources within their community
• 24-hour illness or emergency care is provided 7
  days a week

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Community-based Resources

• Local School District
• Local Preschool or Child Care Centers
• Hospitals/Medical Centers
• Local Department of Health
• Local Department of Public Welfare and Social
  Services
• Public Housing Authority
• Medicaid/SSI

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Coordinated

• Families are linked to appropriate support,
  educational, and community-based services
• Information from other service providers is
  centralized
• Primary providers collaborates on plan for
  childs care with all service providers

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Community-based Services

• WIC
• Head Start
• Mental Health
• Home Health
• Medical/Community Health Center
• Early Intervention
• Healthy Steps (for Medicaid recipients)

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Compassionate

• Concern for well-being of child and family is
  expressed and demonstrated
• Families values, beliefs, and behaviors are
  respected
• Primary provider actively listens to families and
  validates families feelings

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Culturally Competent

• Familys cultural background is recognized,
  valued, and respected
• Multi-language materials and translation services
  are made available as needed

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Parent Support

• Spouse
• Other family members
• Religious institution
• Community mental health center
• Other parents, neighbors, friends
• Local parent support groups

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How to Support the Family

• Listen carefully and learn
• Dont rush to judge
• Be open minded
• Remember siblings, partners, and grandparents
• Recognize the importance of respite - arrange for
  its provision when requested

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What the Primary Provider Can Do

• Provide parent education materials
• Be knowledgeable about community resources and
  how to access them
• Participate in training programs to expand
  knowledge and skills

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Care Coordination

• Appointment scheduling and tracking
• Family-focused psychosocial assessment
• Outreach
• Care planning and implementation
• Assurance of access to care, authorization of
  services, service monitoring and brokering

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Care Coordination

• Resource management
• Quality assurance
• Public program eligibility determination
• Linkages with schools and other community based
  agencies, family support programs, and
  educational services

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Care Coordination

• Others may have a role in care coordination,
  including a case manager assigned by the managed
  care plan
• Reimbursement for care coordination functions is
  seldom available or adequate
• Most plans/practices have inadequate automation
  systems to support case management

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Benefits of a Medical Home

• Enhanced efficiency for children and families
• Efficient use of limited resources
• Expanded expertise and competence for
  professionals
• Establishment of a forum for problem solving
• Increased patient/family satisfaction
• Increased professional satisfaction

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Barriers to the Medical Home

• Ineffective communication
• Lack of knowledge about resources
• Varying eligibility requirements
• Gaps/duplication of services
• Inadequate parent-professional partnerships
• Geographic distance
• Financial and/or program limitations

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Individuals with Disabilities Education Act (IDEA)

• Infants and Toddlers with Disabilities - birth to
  3 years
• Assistance for Education of All Children with
  Disabilities - 3 years to school age
• Eligibility defined by the state

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What do Children and Families Receive through
IDEA?

• Multidisciplinary evaluation
• Individualized programs
• Education for child, services for family
• Plans written into individualized plans

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Childrens Center for Restorative Care and
Medical Homes

• We are working to provide comprehensive care
  linking the tertiary care center and the primary
  care providers to establish the best, most
  efficient support for these special needs
  children in their communities.

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Mission Statement

• The Childrens Center for Restorative Care is
  committed to the development of systems of care
  for children with special needs so that their
  condition may be stabilized to the highest level
  possible in their family and in their community.

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What population is served by the Childrens
Center for Restorative Care?

• The Childrens Center for Restorative Care is
  dedicated to the care of special needs children.
  
• Children with special needs are defined as those
  children with physical and /or mental conditions
  the interfere with daily functioning and are
  expected to last over time.

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What is the Childrens Center for Restorative
Care?
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Diagnoses of Children Followed

• Spina bifida
• Cerebral palsy
• Traumatic brain injury
• Failure to thrive
• Pulmonary disease
• Heart disease

• Developmental delay
• Feeding problems
• Seizure disorders
• S/P Gunshot wound to head
• S/P extreme prematurity

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Members of the Interdisciplinary Team

• Physicians
• Nurse Practitioners
• Nurses
• Dietitians
• Physical therapists
• Occupational therapists

• Speech therapists
• Psychologists
• Social Workers
• School teachers
• Chaplains
• Secretaries

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What We Do for Our Patients

• Outpatients receive periodic multidisciplinary
  evaluation members of the team coordinate with
  providers in the communities
• When patients require specialized care that
  cannot be provided in their communities, they may
  be transferred to the Childrens Restorative Care
  Unit

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What We Do for Our Patients

• Ongoing coordination of care and communication
  with community providers

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Thank you!