Carla Fedor RN, CDDN

1
Creating a Medical Home for Kids with Special
Needs
Carla Fedor RN, CDDN Continuum of Care
Project-UNM HSC
2
CSHCN Definition

• Children 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.
• - The federal Maternal and Child Health Bureau
  (July 1998)
• - Definition adopted by AAP (October 1998)

3
What is a Medical Home ?

• It is not a building
• It is not an institution
• It is a place and an environment where
  healthcare nurtures certain values

4
Medical Home Is

• Where healthcare is
• Accessible
• Family-centered
• Comprehensive
• Continuous
• Coordinated
• Compassionate
• Culturally-competent
• And for which the pediatrician
• Shares responsibility

5
(No Transcript)
6
Children with physical conditions

• Congenital anomalies
• Sequelae of prematurity
• Neuromuscular disorders
• Chronic diseases
• Traumatic injuries
• Sensory impairments

7
Pediatric Chronic Conditions

• Asthma
• Rheumatoid arthritis
• Diabetes
• Myeloproliferative conditions
• Sickle cell disease

• Seizures
• Immunologic disorders
• Gastrointestinal
• Genitourinary
• Dermatological disorders
• other

8
Children with Cognitive Concerns

• Developmental delay
• Mild severe mental retardation
• Pervasive Developmental Disorder
• Autism
• Learning disabilities/ADHD

9
Children with emotional disorders

• Behavior problems
• Psychiatric disorders
• Depression,Psychosis, Neurosis,
• Post Traumatic Stress Disorder

10
Children with sensory deficits

• Deafness/hard of hearing
• Blindness/serious visual impairment
• Deaf/blind

11
Who are these CSHCN in New Mexico?

• About 57,000 children with a physical, cognitive,
  emotional or sensory chronic condition

12
How Many Children?

• 18 of children have a chronic physical,
  developmental, behavioral, or emotional condition
• Prevalence is greater among older children, boys,
  African-Americans, and children from low-income
  and single-family households
• CSHCN have 3x as many bed days and school
  absences as other children
• 11 of CSHCN are uninsured
• 6 are without a medical home
  Newacheck and Taylor (1992)

13
Accessible

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

14
Family Centered
Based on the recognition that

• Family is the principal caregiver and the center
  of strength and support for their children
• Parents are experts on their own children and are
  a source of essential information
• The medical provider shares unbiased and complete
  information on an ongoing basis

15
Continuous

• Same primary health care professionals are
  available from infancy through adolescence
• PCP assists with transitions
• - Hospital to home
• - Home to school
• - School to job or independent living
• - Primary to secondary to tertiary medical
  care

16
Comprehensive

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

17
Coordinated

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

18
Compassionate

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

19
Culturally competent

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

20
Sharing responsibility

• Pediatrician accepts responsibility for services
  rendered
• Pediatrician maximizes quality while minimizing
  cost
• Pediatrician ensures that all needed services are
  delivered and avoids duplication

21
How do we go about providing every child with a
medical home?