I. INTRODUCTION

Children with special health care needs have chronic physical, developmental, behavioral, or emotional conditions. These children also require health-related services beyond those typically required by other children. Medically fragile children have a condition diagnosed or recognized by a physician that can be volatile and change suddenly resulting in a life-threatening situation. Many of the qualifying children are either HIV positive children, children with developmental disabilities, children with complications associated with premature birth, drug exposed infants or other children who have medically complicated conditions. Foster care providers for medically fragile children must provide a specialized service based on the child’s individualized needs that is beyond “ordinary parental duties.” A difficulty of care rate has been established to reflect the services being rendered by foster parents for those children identified as medically fragile.

Child welfare staff shall observe best practice with regard to health care services for children in care. This includes, but is not limited to:

· determining the child’s medical status and need for medically fragile care at the initial ISP meeting;

· conducting regular monthly face-to-face contact with medically fragile children;

· conducting quarterly, or more often, if needed, communication/contacts with the children’s health care provider (s); and,

· conducting timely ISP meetings (in accordance with ISP policy) to monitor, and review child’s medical and other individualized needs in order to determine whether the child continues to meet the requirements for medically fragile care.

Child welfare staff must recognize and understand that DHR is the “parent” for children in our custody. Therefore, child welfare workers must ensure that children’s health needs are being met and that all medical appointments are kept.

A. Children Who May Qualify For Medically Fragile

The following information is provided to help identify children with conditions that can make them medically fragile. The criteria stress the importance of considering the amount of care required by these children rather than their diagnosis. Even though a child may have a serious or tragic condition such as blindness or deafness, the child may not require care at a level to be considered medically fragile.

Children with any of the following medical conditions can be considered medically fragile. It is the care requirements of the child rather than the condition/diagnosis that determines if the child is medically fragile. This is not an all-inclusive listing.

1. Human Immunodeficiency Virus

Human Immunodeficiency virus (HIV) is the virus that causes AIDS. HIV is not easily transmitted or spread through the air, water, by insects, or during ordinary social contact. It has never been transmitted by casual contact. The most common ways that HIV is transmitted from one person to another are by having sexual intercourse (i.e., anal, vaginal, or oral sex) with an HIV-infected person, sharing needles or injection equipment, blood transfusions, or HIV-infected mothers to babies before or during birth, or through breast feeding after birth.

Children who test positive for the Human Immunodeficiency virus (HIV+) are either asymptomatic or symptomatic. It is not uncommon for an infant born to an HIV positive mother to test positive in infancy (0-12) due to the mother’s antibodies. Infants testing positive at birth may not be infected by the HIV virus and remain asymptomatic. The infant testing positive at birth for HIV, but is asymptomatic, must have other special care needs to qualify for medically fragile care.

Children who test positive for HIV at birth must be tested every six months until they are two years of age. Children who receive medically fragile care due to HIV symptoms only will no longer qualify for medically fragile care if they have tested and received three consecutive negative HIV Tests, usually completed by two years of age. However, if an HIV positive child has received three negative HIV tests, and receives medically fragile care due to other special care needs unrelated to HIV, a determination must be made, in accordance with ISP policy, of whether medically fragile care will need to be continued.

2. Drug Exposed Infants

Drug exposed infants (0-12 months) that require specialized caregiving are considered medically fragile when they exhibit at least two of the following seven conditions.

Any or all of the following may be complications/symptoms of drug exposure in an infant. All symptoms may not appear in every child.

· Prematurity (childbirth occurs at 32 weeks or less)

· Low birth weight (5 lbs.- 8 oz. or less)

· Low Apgar score (6 or less)

· Small for gestational age

· Need for ventilator at birth

· Subacute withdrawal

· Infections to include congenital viral or bacterial (hepatitis, syphilis, gonorrhea, cytomegalovirus, and HIV)

Behavioral symptoms of drug exposed infants include difficult to comfort, high-pitched persistent cry, hyperactive, and irritability. Other indicators are jitteriness, muscle stiffness, sensitive to sound, feeding and digesting difficulties, and poor sleeping patterns. Drug exposed infants should receive more than the standard medical follow-up. Follow-up interventions should include, but are not limited to nutrition need assessment, vision/hearing screening, speech/language assessments, physical therapy, and early educational need assessments. For children over twelve months of age who continue to experience complications refer to the section titled “older children who qualify as medically fragile ” page 8.

3. Fetal Alcohol Syndrome

Fetal alcohol syndrome is a disorder seen in babies born to women who consume alcohol during pregnancy. This syndrome results in changes in growth and physical appearance of the infants. It is suggested that the amount of damage that occurs to the infant is related to how early in the pregnancy the fetus was exposed to alcohol and how much the mother consumed. Alcohol exposure during pregnancy is a primary cause of birth defects and developmental delays. Children with fetal alcohol syndrome may have a slower growth rate than other children, have facial abnormalities, and have problems with their central nervous system, including mental retardation.

Any or all of the following may be complications/symptoms of fetal alcohol syndrome. All symptoms may not appear in every child with fetal alcohol syndrome.

· poor growth rate

· jittery, irritable, rigid, and extremely sensitive to sensory stimulation, especially sound

· vomiting, dehydration, and diarrhea

· feeding difficulties (poor sucking and swallowing)

· unable to establish regular routine for sleeping and waking

· small head, narrow eyes, flat midface, low nasal ridge

· developmental delays

· muscle problems, bone and joint problems, heart defects, kidney defects

4. Hepatitis

Hepatitis is a condition in which the liver is inflamed. It is contracted from infected blood or blood products, and/or by sexual contact with an infected person. The inflammation prevents the liver from functioning properly, and could result in the “yellow jaundice” link to the hepatitis disease. Hepatitis B is most serious because it persists in the blood stream. Children with hepatitis B require special care primarily during the critical treatment phase and may qualify for medically fragile care.

Any or all of the following may be complications/symptoms of hepatitis. All symptoms may not appear in every child.

· lethargy

· irritability

· poor feeding

· fever

· jaundice

· rash or joint pain

5. Seizure Disorder

Epilepsy is not a diagnosis or a disease but rather a description of one symptom that is very ordinary in children who have experienced brain injury. Epilepsy has been referred to as “seizure disorder.” It is a chronic medical condition produced by temporary changes in the electrical functioning of the brain, causing seizures, which affect awareness, movement, and sensation. A seizure may result in convulsions, periods of unconsciousness or altered behavior. Infants and children with a seizure disorder must receive regular follow-up care to establish how well their medication is working and whether there are serious side effects. When the child’s physician or health care providers and the ISP team determines that the child’s seizure condition is stabilized and being controlled by medication, and there are no other special care needs, the child would not qualify for medically fragile care.

6. Cystic Fibrosis

Cystic fibrosis (CF) is a life-shortening disorder that affects the way that salt and water move into body cells. It is one of the most common inherited disorders among Caucasians in the United States. The most significant effects of this condition are in the lungs and digestive system. The changes most often associated with CF involve the mucus producing glands, the sweat glands, and the glands, which secrete digestive fluids. Currently there is no cure for CF.

Any or all of the following may be complications/symptoms of cystic fibrosis. All symptoms may not appear in every child.

· persistent coughing and/or recurring wheezing

· recurring pneumonia or other respiratory infections

· difficult, rapid breathing

· nasal polyps

· excessive hunger with poor weight gain

· salty tasting skin

· distended abdomen

· bulky, greasy, foul smelling bowel movements

· chronic diarrhea

7. Traumatic Brain Injury

Traumatic brain injury (TBI) occurs from a fracture or penetration of the skull. Traumatic brain injuries are most often the result of the head impacting a hard surface which leads to brain swelling or bleeding around the brain within the skull. The damages can result in the vertebral column affecting the spinal cord’s ability to send and receive messages from the brain to parts of the body that control motor, sensory, and autonomic functions. Symptoms of brain injury include excessive sleepiness, inattention, impaired memory, depression, slowed thinking, and irritability. TBI can result in paralysis or loss of body control functions. Brain injuries can occur in children as a result of injuries sustained in a motor vehicle accident, bicycle accidents, falls, sporting injuries, and child abuse.

8. Shaken Baby Syndrome

Forceful shaking of an infant/child causes shaken baby syndrome. This vigorous shaking can result in brain damage leading to mental retardation, speech and learning disabilities, paralysis, seizures, hearing loss, and even death. The victims of shaken baby syndrome range in age from a few days old to five years old. As a result of being shaken, children may show signs of a variety of disabilities, including partial or complete loss of vision, hearing impairments, seizure disorders, cerebral palsy, sucking and swallowing disorders, developmental disabilities, autism, cognitive impairments, behavior problems and permanent vegetative state.

9. Hemophilia

People with hemophilia, known as hemophiliacs or free bleeders, bleed longer because their blood does not clot well. If proper treatment is not received some hemophiliacs can bleed to death. Hemophilia is a genetic disorder that affects males of all races and ethnic backgrounds. It is rare for females to have hemophilia. Children with hemophilia may be medically fragile because of the volatile condition that can require sudden specialized care and treatment.

10. Sickle Cell Anemia

Sickle cell anemia is an inherited, chronic disease in which the red blood cells, normally disc-shaped, become crescent shaped. These cells function abnormally and cause small blood clots. (Having sickle cell trait only does not qualify for medically fragile care.)

Sickle cell anemia is present at birth; however; symptoms do not occur until after four months of age. Sickle cell anemia can become life threatening when damaged red blood cells break down, when the spleen enlarges and traps the blood cells, or when a certain type of infection causes the bone marrow to stop producing red blood cells.

Any of the following may be symptoms of sickle cell anemia:

· joint pain, bone pain

· abdominal pain

· fatigue

· fever

· breathlessness

· rapid heart rate

· delayed growth

· susceptibility to infections

· bloody urine or excessive urination

· poor eyesight/blindness

11. Autism

Children develop autism as a result of a genetic predisposition (dealing with multiple genes), environmental insult, or insult to the developing brain prior to age three years. Autism is most common in males and appears early in life, usually before the age of three. Autism is characterized by deficits in language/communication, reciprocal social interactions, and abnormal behavior. Autism is also acquainted with neurological disturbances, gastrointestinal abnormalities, and immune dysfunction. Autism is, therefore, a biological disorder and is best described as “autistic spectrum disorder” because of its wide clinical spectrum.

The early signs of autism include social, behavioral, and communication concerns. Social concerns are:

· maintaining poor eye contact

· appearing to be in their own world and unaffected by environmental stimuli

· preferring to play alone, uninterested in interacting with other children, and not smiling at appropriate social clues

Behavioral disturbances include, but are not limited to:

· tantrums

· lining things up

· oversensitive to certain textures or sounds

· getting stuck on things over and over

Communication concerns include, but are not limited to:

· not responding to their name

· inability to verbally express their wants or needs

· appearance that they may be deaf at times

· does not point or wave good-bye

· does not follow directions

· may have previously spoken a few words, but does not (cessation of language development)

Concerns that warrant immediate evaluation are:

· no babbling or gesturing by age twelve months

· no single words spoken by age sixteen months

· no two-word spontaneous phrases spoken by age twenty-four months

· any loss of any language or social skills at any age

There is no cure for autism but treatment can reduce symptoms and help people with autism function better. Treatment measures include medications, speech therapy, behavior modification, vitamin and mineral supplements, auditory training, and vision therapy.

12. Diabetes Mellitus

Diabetes mellitus is a disease that has an effect on the body’s capability to control the amount of glucose flowing in the blood. Children with Type I diabetes are usually insulin-dependent. In insulin dependent diabetes mellitus, the body fails to produce insulin; therefore, another source of insulin must be made available to regulate the amount of glucose in the blood. Type I is most common in children and adults younger than thirty. Caregivers of young children who have insulin dependent diabetics require special training to properly care for these children. The training should include appropriate storage and administration of insulin, recognition and treatment of hypo and hyperglycemia, meal planning, and urine and blood glucose measurement.

Diabetes mellitus Type I and II are serious diseases, which can pose threats to both the child’s life and his/her developing sense of self. Successful diabetes supervision usually requires significant lifestyle modifications for the whole family. It is the care required by the child that will determine if a child with diabetes meets the requirements for medically fragile care.

Diabetes can directly cause serious life-threatening events. If diabetes is not treated properly, it can lead to numerous health complications which include heart disease, stroke, high blood pressure, blindness, kidney disease, nervous system disease, and dental disease. In addition, diabetes may result in the loss of limbs or death.

Any or all of the following may be complications to diabetes mellitus

· frequent urination and increased amount of urine

· weight loss, despite increased appetite and thirst

· extreme tiredness or weakness

· visual impairments, such as blurred vision

· infections which may involve the skin, vagina, bladder, or other areas

· pain, numbness or tingling in the hands and feet

13. Serious Birth Diagnoses

Infants (0-12 months) diagnosed at birth with serious medical conditions require strict medical follow-up and/or frequent hospitalizations. Indicators of serious medical conditions include but are not limited to:

· Prematurity (32 weeks or less)

· Low birth weight (5 lbs. – 8 oz. or less)

· Low Apgar (6 or less)

· Intra Ventricular hemorrhage (IVH)

· Need for Ventilator at birth

· Small for gestational age

· Seizure disorders

· Requiring Apnea monitors

· Poor feeding capabilities

· Retinopathy

14. Congenital Defects

Children diagnosed with serious medical conditions requiring strict medical follow-up may also be considered medically fragile. This list is not an all-inclusive listing.

· Congenital heart disease (birth defect that involves the heart or major blood vessels leading to and from the heart)

· Spina Bifida (birth defect in which the spine fails to close)

· Hydrocephalus with or without shunt (condition caused by abnormal buildup of cerebrospinal fluid in the ventricle of the brain)

· Microcephaly (head size is small in relation to the body size)

· Cerebral Palsy with Complicating Conditions (term used to explain circumstances where there is loss of control of the voluntary muscles)

15. Older Children Who Qualify As Medically Fragile

Children over age three, who are without adequate self help skills to care for themselves can be considered medically fragile. These children require everyday tasks be completed for them such as grooming, bathing, toileting, feeding, dressing, ambulation, and positioning, administration of all medications and special therapies.

Children, any age, requiring specialized health care maintenance at home can be considered as medically fragile. The following are examples of conditions that may warrant medically fragile care in older children. It is not a comprehensive list and child welfare staff should consult with the Office of Foster Care if there is a question of other possible qualifying conditions.

· Tracheotomy care

· Gastronomy feeding and care

· Broviac Catheter Intravenous Central Line Care

· Apnea monitoring

· Oxygen therapy

· Dialysis

· Bladder Catherization care

· Burn care (for extensive skin and body damage)

· Wound care (depending on severity)

· Percussion therapy

· Factor 8 infusion therapy (for hemophilia)

· Naso/gastric feeding

· Terminal illness care

· Specialized sterilization practices

When specialized medical care/treatment is no longer needed, the child is no longer eligible for medically fragile difficulty of care payment. This determination is made at the ISP team meeting. It is the responsibility of the social worker to obtain medical records from the medical providers to assist in the determination.

B. Children Who Are Not Medically Fragile

Children who exhibit any of the following characteristics but do not require special care cannot be classified as medically fragile.

· Developmentally delayed children with no serious medical or behavior problems requiring no special care.