1. The Child with Special Health
Care Needs
Andre Sookdar
Class of 2013

2. Objectives
• Child with Special Health Needs
• Medical Home
• Role of the Family Physician

3. Definition
• Children with Special Care Needs are
“those who have or are at increased
risk for a chronic physical,
developmental, behavioural, or
emotional condition and who also
require health and related services of a
type or amount beyond that required by
children generally.” (Federal Maternal
and Child Health Bureau)

4. Definition
• Disabilities – Cerebral Palsy
• Severe Chronic Illness – Type 1 DM
• Congenital Defects – Cleft Palate
• Health-related and Behavioural
problems – Learning Disorders or
ADHD

5. Definition
• Impairment – loss or abnormality of
normal physiology or anatomy, e.g.
long eyeball
• Disability – restriction or loss of ability
to perform normal actions e.g. myopia
• Handicap – disadvantage for an
individual, arising from a disability

6. Medical Model of Disability
• Introduced by WHO in 1980
• Identifying the disability from a clinical
perspective
• Understand and control or alter the course
• Cure disabilities medically, to improve
function and to allow disabled persons a
more “normal” life

7. Medical Model of Disability

8. Social Model of Disability
• Reaction to the medical model
• Identifying barriers, negative attitudes
and societal exclusion of the disabled
• Society fails to take into account of
persons’ differences

9. Social Model of Disability

10. Statistics
• Trinidad and Tobago (UNESCO1995)
17,950 children (10%) in primary school
with Special Health Needs; 1795 with
profound illness.
• Economic Commission for Latin
America and the Caribbean 2000
• 0-4 y 0.7% Male 0.6% Female
5-19 y 1.7% Male 1.4% Female

11. Statistics
Ages Total Mental Sight Hearing U Limbs L Limbs
% % % % % %
0 to 4 0.6 0.1 0.1 0 0 0.1
5 to 19 1.6 0.5 0.4 0.2 0.1 0.2

12. Special Health Care Needs
• Adults face a small amount of common
chronic diseases (DM, HTN, OA)
whereas children face a wide variety or
rare illnesses.
• Few groups are common (e.g. asthma)
• Common pediatric clinic presentations
(seizure disorders, CP) are rare in the
general population
• Alone, isolated if no support

13. Special Health Care Needs
• High cost to both health care system
and family
• Multiple clinics, medication, diets,
equipment
• Multiple providers may conflict
• Conditions can be unpredictable
Cough: will it dissipate or lead to
wheezing in the ER?

14. Special Health Care Needs
• Greater dependence on parents and
health care providers
• Lower rate of immunizations and
screening for common health problems
• Lack of adequate primary care 
greater likelihood for hospitalization and
substance abuse

15. Poverty & Health risk
• Low Birthweight • Lost school days
• Asthma • Severely impaired
• Delayed vision
Immunizations • Iron def anaemia
• Bacterial meningitis
• Rheumatic Fever
• Lead Poisoning
• Diabetic
Ketoacidosis

16. History
• Parental Concerns
• Current level of development and
function (Denver)
• Temperament

17. Antenatal History
• Alcohol
• Smoking
• Medications
• Illegal Drugs
• Nutrition
• Antenatal care
• HIV
• TORCH & other infections

18. Perinatal History
• Birth weight • Jaundice
• Gestational Age • Seizures
• Labour difficulties • Ventilation
• APGARS
• Adverse events
(unprepared
delivery etc)
• RDS

19. Family History
• Metabolic disease
• Consanguinity
• Mental function or special education
• Early or unexpected death

20. Social History
• Resources ($, social support)
• Education
• Mental health
• High-risk behaviour (drug, sex)
• Stressors (marital discord)

21. Other History
• Gender
• Trauma (head injury)
• Infections (meningitis)
• Toxic exposure (lead)
• Physical growth
• Visual, auditory function
• Nutrition
• Chronic conditions

22. Examination
• Observe child at play
• Speak gently to the child
• Approach with friendly manner
• Examine on mother’s lap, floor or
wherever the child feels comfortable

23. Examination
• Make examination into games
• Opportunistic approach
• Involve the parent if child still hesitant

24. Examination
• Skin
• CVS
• Abd
• GU
• Neuro

25. Examination

26. Examination

27. Examination

28. Special Health Care Needs
• Early detection
• Prevention or limitation of disability
• Maximize the child’s potential
• Child in the context of the family
• Address needs of all members

29. Medical Home
• Approach to providing continuous and
comprehensive care
• Cost-effective, appropriate
• Outpatient, inpatient, subspecialty
services
• Establish family-centered care
• Minimize learned helplessness and
vulnerable child syndrome

30. Medical Home
• Care should be accessible, financially
and geographically
• Family-centered planning, decision
making
• Continuous
• Physicians facilitate coordination of
care and information sharing
• Respect and concern for the child
• Compassionate and culturally
competent

31. Medical Home

32. Transition periods
• Discharge from hospital to home
• Entry into school life
• Adolescence
• Adulthood

33. Child’s Understanding
• Children need different explanations of
their disease as they mature
• Ages 4-6 good vs bad
• 7-10 differentiate self from external
environment
• Germ theory and medications fighting
illness
• May not understand more complicated
illnesses

34. Child’s Understanding
• 11 plus understanding of human body,
organs and functions
• Most will ask questions similar to adults

35. Illness’ Effect on Child
• Infancy – affects growth and
development
• Deformity affects child’s response to
parents and vice versa
• Frequent hospitalizations may burden
the family

36. Illness’ Effect on Child
• Preschool – delay in autonomy, mobility
and self control
• Schoolchild – may be subject to teasing
and social isolation
• Absenteeism  missed social
opportunities

37. Illness’ Effect on Child
• Adolescence – affects development of
independence
• Affects body image and causes
embarrassment
• Frequently test limits of illness and
compliance to treatment becomes an
issue
• Greater shift of care from parent to child

38. Illness’ effect on Family
Stressors – psychological and
• Monitoring health social impact on child
status • Balancing the child’s
• Treatment regimes needs with those of
• Lack of information the family
• Lack of opportunity to • Lack of time to
discuss with oneself
professionals • Guilt
• Physical,

39. Illness’ effect on Family
• Cyclical Grief or Chronic Sorrow

40. Illness’ effect on Family
Diagnosis
Shock - Disbelief - Denial
Problem Saturation
Despair - Disability - Guilt
Acceptance
Normalization
Altering the child’s Strengthening child’s
environment resources
Making Trade- Covering-up Doing normal Desensitizing
offs things
Sharing Participating in
management decisions

41. Illness’ effect on Family
• Allow ventilation parenting advice
• Facilitate • Suggest
clarification interventions
• Support patient • Provide follow-up
problem-solving • Facilitate
• Provide specific appropriate referrals
reassurance • Coordinate care and
• Provide education interpret reports
• Provide specific after referrals

42. Conclusion
• Child with Special Health Needs
• Medical Home
• Role of the Family Physician

43. References
• Behrman, Kliegman, Jenson. Nelson
Textbook of Pediatrics 17th Ed,
Saunders 2004
• Aumann K, Britton C. Good Practice in
working with parents of disabled
children cited Oct 2012 Available from:
http://www.parentingacademy.org