1. The Child with Special Health Care Needs
Objectives
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)
This will include children with disabilities (Cerebral Palsy), severe chronic illnesses (Type 1 Diabetes
Mellitus), congenital defects (Cleft Palate) and health-related educational and behavioural problems
(learning disorder or Attention Deficit Hyperactive Disorder.)
Impairment – loss or abnormality of physiology or anatomy, e.g. long eyeball
Disability – restriction or loss of ability to perform actions in a manner or range normal for the person’s
developmental stage as a result of impairment. This is synonymous with pathology in the medical
model. E.g. myopia
Handicap – disadvantage for an individual, arising from a disability, which limits or prevents the
achievement of desired goals, e.g. poor visual acuity. Handicaps may be relative, e.g. poor eyesight can
be overcome with spectacles. It may be social or psychological, not only physical.
Medical Model of Disability:
Introduced by WHO in 1980
sociopolitical model by which illness or disability causes clear disadvantages to the individual and
revolves around identifying the disability from a clinical perspective, understanding it and aiming to
control or alter the course. The intention is to cure disabilities medically, to improve function and to

2. allow disabled persons a more “normal” life.
Social Model of Disability:
Reaction to the medical model
focuses on identifying barriers, negative attitudes and societal exclusion of the disabled. While physical,
sensory, intellectual or psychological variations may cause individual functional limitation; these do not

3. lead to disability until society fails to take into account of persons’ differences.
Statistics
Trinidad and Tobago
UNESCO 1995
17,950 children in primary school with Special Health Needs; 1795 with profound illness.
Economic Commission for Latin America and the Caribbean
2000
0-4 0.7% Male, 0.6% Female
5-19 1.7% Male, 1.4% Female
2009
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

4. UK – 770,000 disabled children (2007); severe disability 8 per 10,000 and mild disability 18 per 10,000.
More disabled boys than girls (11 per 10,000 vs. 5 per 10,000)
Children with Chronic Conditions
While adults face a small amount of common chronic diseases (DM, HTN, OA), children are subject to a
wide variety of rare diseases. A few groups are common e.g. asthma, but even the common
presentations in a pediatric clinic (seizure disorders, cerebral palsy, ADHD) are rare in the general
pediatric population. Type 1 DM occurs about 1/1000 much lower that DM in adults. Children and
families may feel alone and isolated if there are no support groups for them.
Many conditions are high-cost; not only on the health care system but families face additional costs for
transportation to multiple clinics, medication, special diets and medical equipment. Parents have
difficulty finding work that accommodates the needs of the child, further limiting financial resources.
Multiple health care providers often lead to treatment conflicts and the families may be confused and
need guidance.
Conditions can be unpredictable. Parents may worry whether a cough will dissipate or lead to wheezing
in the ER.
Chronic illness leads to greater dependence on parents, and health care providers, than healthy children
would. As such, there is an increased risk of psychological or behavioural problems.
Possibly due to emphasis on specialized care and services, children with chronic illnesses have a lower
rate of immunizations and screening for common health problems. Lack of adequate primary care has
been associated with greater likelihood for hospitalization and substance abuse.
Hx
Exam
General Approach
Early detection of the primary condition, preventing or limiting disability and to maximize the child’s
potential for productive adult functioning. Except while in the hospital, the child’s family provides the
most care, which at times can be an extraordinarily large amount of extra caretaking. Parental health,
mental health and well being strongly affect the child’s outcome. Effective pediatric management
embodies a comprehensive approach to the child in the context of the family, addressing the needs of
all its members.

5. Medical Home
Is an approach to providing continuous and comprehensive primary care from infancy to young
adulthood, encompassing services to meet the child’s needs. Co-ordination of health care is essential for
the child with special health needs. Active management that is cost effective and appropriate, utilizing
outpatient and inpatient services, subspecialty provision and sharing of information is the goal. The
family is the one constant in the child’s life whereas services and personnel change. Family centered
care is important for the family and child to be in control the majority of the time. Self management
minimizes learned helplessness and vulnerable child syndrome.
Care should be accessible to the family, both financially and geographically
Allow family-centered planning, decision making and treatment after adequate and unbiased
medical opinion.
Care is continuous from infancy to adolescence to adulthood, through transitions
Physicians should facilitate co-ordination of care with centralized information and records
Respect and concern for the child
Care should be compassionate and culturally competent
Important transition periods to be aware of:
1. Upon discharge form hospital to home, the transition from the family relying on the hospital
services to having to provide the care themselves should be facilitated. Discharge plans,
medication schedules, home visits and other schemes can be used.
2. Entry into school life can be difficult for most children. Medications, plans for emergencies and
special needs should be planned with the involvement of the school personnel. The child’s
integration into the class’ social atmosphere should be monitored as well.
3. At adolescence, chronic conditions may affect the child’s risk-taking behaviours, substance or
drug use and the development of healthy sexuality.
4. The transition from adolescence to adulthood is marked with difficulties obtaining health
insurance, gaining educational or vocational services, shifting from pediatric to adult health care
and achieving personal and economic independence
Child’s understanding
4-6 Concrete view, obeying rules will lead to good things, bad behavior leads to bad things
7 – 10 differentiate self from external events that may cause illness, understand Germ theory, but may
not understand illnesses such as leukemia and diabetes
11 and up better understanding of human body, organs. Able to link symptoms with illness and may ask
questions similar to adults.

6. Illness’ effect on children
Infancy – affects growth and development parameters, feeding, sleeping, motor abilities and sensory
functions. Deformity may affect the child’s response to parents, who in turn react differently to child.
Frequent hospitalizations may burden the family.
Preschool – delay in autonomy, mobility, self control.
Schoolchild – may be subject to teasing and social isolation. Frequent absenteeism may cause missed
social opportunities.
Adolescence – may affect the development of independence. Care of the illness gradually shifts from the
parent to the child, but not always so. Illness may affect body image and cause embarrassment. Child
may test the limits of the illness and compliance becomes an issue.
Illness’ effect on Family
Cyclical Grief or chronic sorrow – unhappiness and depressed feeling come and go without warning.
Intense feelings of sadness at unexpected events e.g. meeting developmental milestones, but late. Grief
over the loss of expectations of what the child could have done or been.