back button Back to Resources Page

The development of this paper was supported by the U.S. Department of Education Project of National Significance Award # H325N000055 to California State University. (In an effort to be reader-friendly, "he" and "she" and other gender-related words are used randomly throughout this paper).

 

Children who are Technologically Dependent and Medically Fragile:
Medical Issues and Health Concerns

By Krissandra Rivera, RN, PHN, and Frances Oliden, R.N, MSN

Parents of children with disabilities and medical needs children have many questions about their child’s conditions. Some of these are related to medical concerns while others relate to the child’s physical or mental state. Families may be fearful or embarrassed to ask some questions. They are trying to understand their child’s complex medical and developmental situation. Families rely on the professional team serving the child and family to share their expertise and knowledge. All parents want the very best for their children. Professionals should recognize that sometimes there are no clear answers to a family’s question, but sharing available information can be a tremendous benefit to families.

The paper provides general regarding health and medical issues as a resource for early intervention service providers. Information is organized into sections that encompass body the systems.

Breathing or Lung Related Health Issues

Lung related illnesses can range from mild respiratory issues that last a few days to long-term lung disease that requires months or years of medical attention. Some children need breathing support and supplemental oxygen. These types of treatments may damage the child’s lungs, making them more susceptible to respiratory illness. Parents can protect their child at risk for illness by:

Washing their hands frequently
Requesting that guests wash their hands before they play with their infant or child
Keeping their child away from family and friends who are ill
Avoiding large gatherings of people.

It is imperative that both parents and other caregivers learn CPR, how to recognize the signs and symptoms respiratory distress and know when to call 911. Understanding and dealing with the child’s current and potential lung related concerns are important for their health and future development. As professionals, it is important to recognize that if the child is having any difficulty breathing or is receiving respiratory treatments, his energy is used for breathing and he may tire quickly.

Respiratory Treatments are often used to improve the child’s ability to breathe by loosening mucus from the lungs and opening the airway. These treatments often include nebulization (or aerosol) treatments, inhalation through metered-dose inhaler and spacer, and chest physiotherapy. The physician may also recommend suctioning the child’s airway after respiratory treatments if the child is unable to cough up secretions and clear his or her own airway.

Nebulization Treatments

To administer medications in the form a mist for inhalation, an electrical compressor is used. Liquid medication is put into a plastic cup, called a nebulizer and the air compressor converts the medication into an aerosol mist. The child then breathes the mediation into her lungs through a mask or tube that is attached to tubing and connected to both the nebulizer and air compressor. The physician will prescribe the type and amount of medication, the nebulizer machine and replacement parts. A registered nurse or respiratory therapist should instruct parents in the proper cleaning and use of respiratory equipment.

Metered Dose Inhaler and Spacer

Some medications, including bronchodilators and inhaled steroids, require the use of a Metered-dose inhaler or MDI with a spacer (a clear plastic tube with a mask). The medication is suspended in a dilution and packaged in a pressured canister. Medication is sprayed into the spacer and the child breathes it into his or her lungs in five or six breaths. This is repeated for as many sprays as are necessary to give the proper amount of medication.

Chest physiotherapy (CPT)

Another type of respiratory treatment is called chest physiotherapy( or CPT), also called chest percussion and postural drainage (or PP&D), CPT is performed by placing the child in various positions and gently taping on his back or chest for about three to five minutes with a special cup, or by percussing (gently tapping) her chest and back with your cupped hand. The vibrations from the tapping are transmitted through the chest wall, loosening the mucus and moving it from the smaller airways to the larger airways. Mucus traps the dirt, and dust in the air we breathe. When an infection or irritant is present more thick mucus is present. The CPT usually lasts for about 20 minutes. After CPT, the child can cough up the secretions and either spit them out or swallow them. If the doctor prescribed CPT, he will review the techniques and positions with the parents and prescribe a schedule for CPT to be performed. Parents must learn CPT from a medical professional before they perform it on their child. CPT works best when given after a nebulizer or metered-dose inhaler treatment, which will open up airways and allow for more efficient mucus clearance. The doctor may also recommend suctioning the child’s nose and mouth after therapy.

Suctioning

If coughing does not clear the secretions (mucus and saliva) a bulb syringe or an electrical powered suction machine can remove the secretions from the child’s throat. These secretions can often be heard as they move in and out with the child’s breathing. For some children this noise can increase with stress. Suctioning can be necessary to ensure easier breathing. If necessary the doctor will prescribe an electric suctioning machine for use at home and teach parents when and how to use it. A tube and catheter are attached to the electric suction machine. There is a cup that contains the secretions suctioned from the airway. The catheter can be placed in the mouth or nose. The level of suction is controlled by the use of your finger over the suction hole for no more than three to five seconds, the parent must let the child rest thirty to sixty seconds between suctioning. The parent must stop suctioning if the child becomes pale, gray, or dusky or looks panicked. Many children dislike the loud noise the electric machine makes and the feeling of the suction catheter in their mouth. Suctioning causes the child to feel "air hunger", an inability to catch her breath. During suctioning, parents can visualize their child’s desperation for air. This is why suctioning can cause anxiety for both parents and children.

Supplemental Oxygen

If the child’s lungs are still healing and unable to transport an adequate amount of oxygen to his body, he will need supplemental oxygen. His lungs need to heal and develop new healthy lung tissue before he can breathe on his own. It is difficult to estimate how long the child will need supplemental oxygen: It can be several weeks or many months. It is possible that the child may begin weaning from the supplemental oxygen, then become sick and require oxygen for a longer time than anticipated. The child will benefit from staying well and eating healthy. Babies on oxygen often require more calories; parents must work with the pediatrician to make sure that the child’s caloric intake is adequate for optimal growth.

Home Oxygen Equipment

The oxygen equipment should be delivered to the home a day or two before the child’s discharge from the hospital. A medical supply company will supply a large tank to be used at home and a few portable tanks. The medical supply company can deliver oxygen supplies weekly to the home. A longer tube is attached to the oxygen tank; then one end of the smaller tube is attached to the longer tube, and at the other end of the small tube a nasal cannula is attached. Sometimes the physician may prescribe a humidifier bottle to attach to the oxygen tubing. Changing the oxygen tubing and humidifier bottles are essential for preventing bacteria and fungi from growing and causing illness to the child. The nasal cannula is attached to the baby’s nose and cheeks with a special type of tape. A respiratory therapist or a registered nurse will teach parents how to change and secure the canal. If the child has a cold and his cannula prongs get plugged with mucus, the cannula may need more frequent changing. There are different sizes of cannulas and the size the child uses may change as he grows. The medical supply company should supply any special equipment needed.

Tracheostomy or Trach

A tracheostomy is a surgical opening in the windpipe (trachea). Instead of breathing through his mouth or nose, the child breathes through a small plastic pliable tube. A tracheostomy (or trach) maybe temporary or permanent, depending on the reason for the placement.

A trach can be necessary when an obstruction or (blockage) in the upper airway prevents air from getting to the lungs. This can happen when a soft area of tissue in the larynx or trachea collapses and obstructs the movement of air during breathing, or when the upper trachea narrows. A trach can also be needed when continued mechanical ventilation is needed at home or to allow for suctioning of excess secretions that cannot be swallowed. This can prevent possible aspiration of secretion into the into the lungs. The respiratory therapist or registered nurse will teach both parents how to change, care for and clean the trach. A trach can make breathing much easier for some children with respiratory difficulties. Many children with trachs can learn how to talk. A speech or occupational therapist can assist parents and children with practicing this skill.

Feeding and Digestive Health Issues

Most families anticipate mealtimes as happy social events, full of good food and conversation around the family table. When the child has an eating concern, much of that enjoyment is lost. Families can help the child by learning about some common eating issues.

When trying to understand the child’s feeding difficulties, it is important to keep in mind that other developmental areas besides his oral abilities, his cognitive and physical abilities, affect how he eats. Any developmental delay can affect when milestones are reached. If the child’s problem is affecting his ability to eat, an evaluation is critical.

The following are some other causes of feeding difficulties.

Just as some children may not like different textures touching their hands or feet, they may not like textures touching the face or mouth. This is called a sensory difficulty. These children may even dislike other sensory input, such as different smell or tastes. Excessive stimulation from the environment, such as too much noise during mealtime, may also affect the ability to eat.
Medical problems can slowly develop from too much negative input around the infant’s mouth. Tubes, suctioning, tape, smell and even tastes may cause this oral aversion. A child may recall these unpleasant experiences and respond negatively to stimulation in and around the mouth.
The tongue, jaw, cheeks, lips and palate all work together to move food into and through the mouth. If one or more of these are not working properly, the ability to eat can be impacted. Muscle control can be weaker or abnormally strong in certain areas. Coordination and swallowing can be altered. Sometimes the work of sucking, swallowing and breathing can be difficult. These oral motor problems can very complicated.
Some medical problems can create feeding difficulties. These physical problems can create feeding difficulties that easily corrected; others often require more time and treatment.

Every feeding problem is treatable. The less complicated issues may take only a few weeks or several months to resolve; more complicated issues may take many months or even years of treatment by a feeding specialist. The earlier the treatment is started, the better.

The pediatrician may diagnose and treat less complicated feeding issues. If the doctor suspects a more complicated problem, he should refer the child to a feeding specialist. Some areas have clinics that specialize in feeding issues, parents can ask the doctor if there is one nearby. The feeding specialist will collect information about the child and observe the child eating in different settings and at different times of the day. The occupational therapist or feeding specialist therapist may recommend a consultation from another specialist such as a gastroenterologist. After all of this information is collected the feeding specialist will complete a written evaluation and provide a copy for both the parent and doctor. When the specialist has an understanding of the child’s particular issues, the specialist will create a treatment or feeding plan. These plans can be very simple or complex, depending on the child’s needs. The focus of this plan will be the child’s health, safety and nutrition. This plan will include both the child’s immediate needs and long-term goals. All persons who feed the child, including parents, day care providers and school personnel, should carry out the child’s feeding plan.

Gastrostomy or G-Tube

A feeding tube called a gastrostomy tube is one way to provide nutrition to children who have feeding difficulties or poor growth. The child may receive all or part of his food through the feeding tube. The feeding tube is surgically placed from the outside of his belly to his stomach inside his body. If the G-tube feeding takes longer than half of an hour, a special pump can be attached to the feeding tube to provide continuous feeding.

The G-tube is about 12 inches long. An opening at one end is placed inside the stomach; the larger end attaches to a syringe where special formula can be poured into during feedings. A G-tube requires only one tube and can be quickly changed. A disadvantage is that a G-tube can become clogged or slip out, requiring replacement. Parents can be taught to reinsert the G-Tube if it slips out. The physician or home health nurse can also reinsert the G-tube. Some parents worry because it hangs out from the body, but when the child is fully dressed it will go unnoticed.

The other type of G- tube is the button type and the part of the tube outside the stomach attaches to a button. Inside the button is a special valve that acts as a one way trap door. When the separate tube for feedings is attached to the button the valve opens and when the tube is removed the valve closes. The button also has a special tube for venting or burping. The feeding tubes are simple to use and the button is easily hidden under clothing. Placement of these buttons is more difficult and sometimes it can be difficult to completely vent or release the air in the stomach through the button.

The pediatrician, registered nurse or feeding specialist will teach parents how to feed the child through the feeding tube, how to clean and care for the equipment, and how to recognize signs of problems. The child’s feeding tube will be removed when he learns to eat well, does not stop eating with minor illness, can burp without the tube and is growing adequately without the need for supplemental feedings. After the doctor removes the tube the hole will close or heal on its own.

Common questions that families have about G-tubes

Will my child with a G-tube ever eat normally?
What is my child’s medical condition and what caused it?
Will my baby get better?
How long will this special equipment be needed? How do I learn to use it?
What if there is a problem with the equipment? Who do I call?
What do I do in an emergency?
I am exhausted how can I find help?

Early intervention service providers should assist families in obtaining information to their questions about their infant’s particular feeding situation.

Ostomy

A child with an ostomy has had surgery that changes the way he has bowel movements. An artificial outlet called a stoma is surgically created in the abdomen, usually on the left side below the waist line. The healthy end of the colon is stitched in place and attached to the stoma, this diverts waste away from the bowel. This can be the treatment of choice for short bowel syndrome or other conditions that interfere with the child’s own waste elimination system. Stomas can be created to be either permanent or temporary. Temporary ostomies can be reattached at some point when the bowel has healed and is able to function. The stoma is oval shaped and pinkish in color it does not have a nerve supply so it is not painful. This stoma diverts waste away from the bowel and to a special pouch that is made of plastic that attaches to the stoma, called an ostomy bag. The osotomy bag is unnoticeable when the child is dressed. An infant’s diaper is put on over the ostomy bag. Ostomy supplies can be delivered to the home with a doctor’s prescription. The ostomy bag can be attached around the opening of the stoma with a special adhesive that secures the bag in place. Sometimes the ostomy bag can leak and cause skin or other problems around the stoma. If there is any blood in the plastic bag the doctor or ostomy nurse should be contacted immediately. Developing a stoma care routine is extremely important and a registered nurse that specializes in stoma care will teach parents how to care for the stoma. Families should contact this nurse with any questions they may have.

 

Vision and Hearing Health Information

Vision is one of the most important senses for helping a baby learn about the world around her. The sense of hearing teaches a child language and communication. When a child has a vision or hearing loss, her development and learning are affected, and early diagnosis and treatment are critical for her future.

The pediatrician should examine the child’s eyes at each routine check up, if he is concerned about the child’s vision he will refer the child to a pediatric ophthalmologist to monitor the child’s vision. Treatment of eye and visual problems depends on the child’s age as well as the type and severity of the problem. The ophthalmologist may prescribe glasses, an eye patch or surgery. If a child requires glasses she will most likely need a new pair every one to two years to compensate for vision changes. A severe visual impairment can affect all areas of a child’s development. Early referral to early intervention programs serving infants with visual impairments and their families is critical to support the child’s development.

Hearing is essential for understanding and developing speech. Thousands of children each year are diagnosed with a hearing loss. There are different types of hearing losses, with a range of severity from mild to profound. Even mild hearing loss can affect a child’s speech and language development, especially if it goes undetected for some time. A mild or moderate hearing loss can be difficult to detect, especially if the child has developed some coping strategies, such visual cues. Although universal hearing screening has been mandated in California, it is not yet fully implemented. If a baby was not tested in the hospital, parents must be encouraged to make an appointment for a screening immediately. They can consult the pediatrician, regional center, or school district for information. An audiologist should complete the screening. Parents should obtain written results of any testing, including the date and type of exam performed. If a baby failed a hearing screening in the hospital, it is the parent’s responsibility to make sure the baby is retested after discharge. This child’s hearing should be rechecked in six to eight weeks. A number of factors, such as fluid in the ear, can affect the outcome of the exam. If the hearing loss is confirmed, a pediatric audiologist and a pediatrician or ENT specialist should see the child regularly. Infants who have a hearing loss should have an audiological exam every three months for one year after the diagnosis; every six months during the preschool years; and yearly when school age. More frequent evaluations maybe necessary with fluctuating or progressive hearing loss

Discovering the child has a hearing loss creates many difficult decisions and tasks for the parents. Early referral to an early intervention program that serves infants who are deaf and hard of hearing and their families, and community resources or parent support is important.

Neurologic or Brain Related Health Issues

This information introduces brain related problems, but there is much more that families need to know to effectively care for a child with these issues. Assist parents to seek out the parent support network in your county. The regional center in your county can connect parents to support and information for parents. The Internet can be an effective resource. National parent organizations often offer parent friendly literature. Always encourage parents to ask healthcare professionals and other parents about any questions they may have.

What to expect at a neurological exam

This is an overall evaluation of the child’s physical and cognitive abilities. The questions and the assessments will change slightly as the child grows. The evaluation will include some common screening questions and the physician will perform a particular type of physical exam. Other tests include:

Computed tomography (CT or CAT scan). A special type of X ray that visualizes the structure of the brain.
Magnetic resonance imaging (MRI). A magnetic field instead of an X ray is used to visualize the brain.
Head ultrasound. A smooth round probe is placed on the head near the fontanel (soft spot). Sound wave pictures are transmitted on to a screen for a doctor to examine the size of the ventricles.
Electroencephalogram (EEG). Eight to twenty one probes are placed on the child’s head and body to record atypical electrical activity in the brain, especially if there are any concerns about possible seizures.

Remind parent to ask to see a normal CAT scan, X ray, MRI or EEG for comparison basis, when they are shown their child’s exam.

The diagnosis of a neurological (or brain) problem can be devastating for parents. The ventricles and the tissue around them are commonly affected by trauma in a preterm infant. The ventricles are channels of fluid deep inside the brain that produce and store cerebral spinal fluid (CSF or "water"). CSF circulates and "cushions" the brain and spinal cord, while providing essential nutrients for the central nervous system (the brain and spinal cord and nerves of the body). The ventricles are surrounded by brain tissue that contains many nerve cells that tells the body’s muscles how to function. The location and extent of damage to the brain determines how the child is affected. The following information contains information about some common brain problems.

Intraventricular Hemorrhage

Bleeding in or a round the brain is called IVH Intraventricular Hemorrhage. It is most common in preemies born before 32 weeks gestation. Before 32 weeks gestation the blood vessels of the baby’s brain are not well protected, leaving them at risk from trauma. These blood vessels are fragile, tiny and break easily. If these blood vessels break, they bleed into the ventricles. In preemies, changes in blood pressure are the most common cause of trauma. There are a number of other insults that can cause bleeding in the brain at any age. Damage to the brain occurs when the excess blood causes an enlargement of the ventricles, or in more severe cases when the blood flows into the brain tissue that surrounds the ventricles. Blood is perceived as a foreign substance to this tissue and will destroy brain cells. Some experts believe that it is not only the blood in the brain tissue that destroys brain cells, but the interruption in blood flow to the brain, because of the bleed that causes the long-term brain damage.

It is impossible to predict how an IVH will affect a child, and the wait and see approach can be difficult. A mild IVH can cause few or no problems a more severe IVH can lead to long-term complications. If parents are told that their child’s IVH has "resolved" it means that blood is no longer visible in the ventricles on ultrasound. Damage and long-term affects are still possible.

Periventricular Leukomalacia

Periventricular Leukomalacia or PVL is a type of brain injury specific to preemies. The name refers to the softening of the brain tissue in the area surrounding the ventricles. This softening is a result in a temporary decrease in blood flow to the brain, which causes tissue to die. Eventually, cysts or holes develop and replace the healthy brain tissue with fluid. The loss of this important brain tissue and the nerve fibers that run throughout the brain tissue (controlling muscle movement) can cause long-term damage. The reason for decreased blood flow resulting in PVL is often unknown, but some causes include: extreme prematurity; Intraventricular Hemorrhage (IVH); a temporary lack of oxygen; a brain infection (meningitis); or seizure disorder.

There is no way to predict potential problems. Not knowing can be the hardest part. The area of the brain affected determines the extent and type of damage. Tissue damage in the back of the brain may affect vision. Cysts in the front of the brain can impair intellectual function. Movement can be affected by the damage around the sides of the ventricles. Trauma to the nerve fibers can affect communication between different parts of the brain, as well as affecting movement and coordination. Children with PVL are at risk for the development of hydrocephalus and cerebral palsy. A developmental specialist should watch a child diagnosed with a mild or suspicious PVL closely. Early and ongoing intervention, including physical, occupational, and speech therapy can enhance the child’s outcome.

Hydrocephalus

Hydrocephalus occurs when too much cerebral spinal fluid (CSF) is in the ventricles of the brain. Excess CSF causes the child’s head to grow to quickly and creates pressure on the brain. If the child’s hydrocephalus is congenital, some type of brain structure abnormality interfered with the reabsorption of CSF while he was developing in the womb. If the child has acquired hydrocephalus, this means that an injury, or an infection caused an interference of CSF reabsorption or there is an abnormally large production of CSF.

In very mild cases the hydrocephalus can resolve itself. If the body reabsorbs the excess fluid in the brain, the ventricles stop growing, and the symptoms cease. In more severe cases, the increased size of the ventricles will cause further problems requiring treatment. Treatment involves removing fluid from the ventricles. This can be done one of three ways:

A Serial Lumbar Puncture. The doctor inserts a needle into the child’s back and into the spinal canal, then withdraws fluid. This procedure may be done periodically.
A Reservoir. A one inch (approximately) round chamber is placed under the skin in the child’s head. The chamber connects to a tube in the ventricle. When necessary, fluid can be removed periodically from the ventricles by placing a needle in the chamber under sterile conditions.
A shunt. A tube is surgically placed in one of the ventricles. The tube is attached to a longer piece of tubing placed under the skin. The tube travels behind the ear, down the neck and chest and ends where the CSF fluid can drain into the abdomen. The shunt cannot be visualized outside the body. Once the shunt is in place, the ventricle size usually decreases and the head should begin to grow normally. Until there are further advances in medicine a shunt is needed for life. The child’s shunt will need to be replaced if it stops working. A malfunction can be caused by an obstruction, a mechanical flaw, or when the child outgrows the shunt. The physician or registered nurse will teach parents about the signs and symptoms of a problem with the child’s shunt and some precautions parents can take to protect the shunt mechanism.

Long term outcomes of children with hydrocephalus vary according to severity. Some children will develop normally; others will have significant motor problems. Delays in vision, intellect, speech and social abilities are also possible. The child needs to be evaluated early to establish a record of what is considered normal for this child. This baseline can be used in the future as a basis for comparison.

Seizures

A seizure is an atypical, repetitive and uncontrollable movements of the muscles. A seizure disorder often exists with another neurological problems, such as a brain hemorrhage. Other causes of seizures include trauma at birth, significant lack of oxygen, genetic abnormalities, infection and metabolic disturbances (such as low blood sugar or a high fever).

Diagnosis of a seizure disorder involves a neurological exam, including an EEG and/or a CAT scan or MRI. Medications can often times control seizures. In infants the most common type of seizures are subtle: tiny jerking motions in the arms or legs that cannot be stopped with holding. Toddlers and older children exhibit more obvious movements and symptoms. Over time parents can sometimes learn what particular situations may trigger a seizure. The long-term outcome of children with seizures is difficult to predict. As with other problems associated with the brain, the earlier the problem begins and the more severe the motor problem, the more likely there will be future effects. Recurrent seizures as well as motor and cognitive delays are potential problems.

Cerebral Palsy

An injury to the brain before, during or shortly after birth can cause cerebral palsy (or CP), a disorder affecting muscle tone and movement. The most common injury that can cause CP is thought to be lack of oxygen. The extent and location of the brain insult determines the type and severity of cerebral palsy. Some babies show symptoms at birth; others are not diagnosed for several years. Some early symptoms of CP include sleeping difficulties, feeding problems, difficulties coordinating sucking and swallowing, jittery or jumpy actions, and even stiffness. Clear evidence of CP may not be evident until the baby’s nervous system is more mature. For these reasons, Physicians often do not usually make a diagnosis of CP until the child is 12 to 18 months old.

Cerebral palsy is not a progressive disorder, it will not get worse over time. There is no cure for cerebral palsy, but physical, occupational and speech therapy can help the child achieve her potential. Doctors classify CP in two ways: by the affected limbs, and by the nature of the movement disturbance. The child with cerebral palsy can be affected in several areas, and more that one term may be used to describe his condition.

A child diagnosed with CP will be referred to an early intervention program. Drugs including muscle relaxants are sometimes used. Surgery is performed when it can help certain specific problems affecting the eyes, ears or muscles involved in walking. Orthopedic devices such as splints, wheelchairs, and walkers can also help a child with CP.

Children with cerebral palsy have difficulty with movement and positioning of the body. They are at risk for physical problems, such as joint contractures (stiffness), hip dislocation, and scoliosis (curvature of the spine). Problems associated with the central nervous system are common in children with CP. These can include difficulties with communication, feeding, vision, hearing, behavior and learning.

In many cases, intellectual abilities are normal, although learning disabilities may appear later in school. With severe CP significant mental delays may occur. Children with CP are also at risk for developing a seizure disorder. Early intervention service providers should assist families in obtaining the information they seek about their child’s diagnosis.

Common questions that families ask when their child is diagnosed as having cerebral palsy:

What is cerebral palsy? What caused it?
Will my child be normal?
Will my child be able to talk?
Will my child walk?
How long will it take for my child to walk?
Will my child need braces or a wheelchair?
What do physical and occupational therapists do?
How much therapy will my child need and for how long?
Will my child’s condition improve faster with more therapy?

 

Genetic or Other Health Issues

One of every thirty children is born with a major genetic abnormality. Chromosomes contain the genetic information that controls the function and the structure of the body. The body cells receive the information from both parents during the embryonic period. An error in the instructions from these genes (which control normal fetal development) can cause a genetic abnormality, chromosome problem or birth defect. Genetic abnormalities can cause physical, cognitive and emotional delays. In addition some of these children can have very complex health issues, for example, a child with Down syndrome may have a heart defect that needs multiple corrective surgeries. There are many different types of genetic syndromes or birth defects that result in developmental disabilities. Many of these genetic syndromes are very complex, some of them are extremely rare, others of them occur much more frequently. Some of them are inherited and others are caused by an error or translocation of chromosomes. The genetic counseling process can determine exactly which genes are affected and provide families with information on the nature, inheritance and specific implications of a particular genetic disorder. Currently, there is no treatment for genetic abnormalities, although treatment exists for some of the medical conditions that are a result of the genetic defect. It is important for these children that they begin with early intervention services as soon as possible. For information about specific genetic disorders contact the Genetic Alliance at: 1-800-336-GENE or http://geneticalliance.org.

Referral Resources

1. "Who should I talk to if I’m concerned about my child’s development?"

Parents should be referred to the primary care physician or pediatrician for most questions. This doctor monitors well child care and immunizations. This doctor refers and confers to other medical specialists as mandated by state and federal laws. Medical specialists answer questions and monitor specific health problems for the technologically dependent and medically fragile infant. Medical specialists are often located in major medical centers or hospitals.

Geneticist - specializes in diagnosing genetic disorders.

Pulmonologist -specializes in lung and breathing problems.

Ophthalmologist - specializes in vision and eye problems.

Gastroenterologist - specializes in digestive system and feeding problems.

Cardiologists - specializes in problems with the heart.

Neurologist - specializes in problems with the nervous system, brain, and seizures.

Orthopedist - specializes in problems with the bones.

Audiologist - specializes in hearing.

Regional centers - there are twenty one regional centers in California. These centers are often a point of entry into the developmental disability services system. The regional centers provide an intake assessment to determine eligibility and service needs. Along with other agencies, the regional center will arrange, purchase and provide early intervention services for eligible infants and families.

Home Health Agencies - these services may provide case management and health information to the technologically dependent or medically fragile infant. These are fee for service but may be covered by private insurance or Medicaid plans.

California Children’s Service - these case management services are available to children with specific disorders. There is an income eligibility scale. This service provides for services not covered by Medicaid.

Public Health Nursing - provide home visiting and case management services to provide support, education, resources, and information. Some public health agencies provide comprehensive health services from birth to adolescence, including health check ups, immunizations, specialized therapy and rehabilitation services. Some programs offer services that are specific to the health and medical needs of infants and toddlers with disabilities.

 

2. "How do I find programs to help my baby?"

These programs in the community are specifically designed to meet the needs of children who are eligible for early intervention services. Some of these programs may provide and coordinate services for children with disabilities. Some agencies share responsibility for developing and coordinating early intervention services at the local level.

California Early Start Program-provides services including family and professional collaboration, family support, and coordination of services provided by agencies and service providers within the community working with a special needs child. The California Early Start Program assures the families served have rights, protections, and access to early intervention service and educational programs. Call 1-800-515-BABY.

3."How can I pay for what my child needs?"

Financial concerns are often a worry for family with children with special needs. Families may be eligible from public health agencies. Applying for these services may be confusing and difficult. If the family has private health insurance, determining which services will be covered, any deductible amounts, and types of coverage will be important. The following may offer services for eligible families:

California Children’s Services (CCS) is a statewide tax supported program for specialized medical care and rehabilitation. Children who have suspected medically eligible diagnosis may receive financial assistance. CCS does have a both a financial and diagnosis eligibility, however, occupational therapy (OT) and physical therapy (PT) are not income dependent. CCS funding is available for families who have insurance and Medicaid.

Supplemental Security Income (SSI) is available for a child with disabilities. If eligible for SSI, child automatically receives Medicaid. Families should be encouraged to apply and obtain a filing date to assure the maximum benefits are received.

InHome Support Services are available to children who require special help at home for their care and who are receiving SSI. The funding for this program is given to the family to supplement their income while they care for their child full time. The funding may be used to hire a part time caregiver.

Medicaid Medical provides children meeting the eligibility with medical coverage for regular health checkups and any special medical care needed.

MediCal Disability - pays for hospital care when child is hospitalized for over 30 days and requires extensive medical services. This type of coverage may continue for over a year. Parent applies for this program through local Medicaid office (County Human or Health Service Agency).

DDS Waiver (Medicaid Waiver) provides additional services through the Regional Center. To qualify for this waiver a child must be enrolled in the regional center and have a minimum of two significant problems involving self-help, behavior, or health issues.

Institutional Deeming is a state program, which allows a child with disabilities to qualify for Medicaid without regard for parents’ income or assets. To qualify the child must be a client of the regional center, be less than 21 years of age, and be living at home. Referrals for this service are through the regional center.

EPSDT (Early Periodic Screening, Diagnosis and Treatment) is a Medicaid funded program which covers services not normally covered under the Medicaid program such as long term care and in-home nursing services. This program requires that child not be a client of the regional center but be full scope Medicaid and under 21 years of age.

Healthy Families is a low cost health coverage program for children birth through 18 years of age. Call 1- 800-880-5305

California Kids is a program that provides outpatient, preventative and primary health care to children aged 2-18 who are not eligible for Medicaid, and whose families cannot afford private insurance. The program does have income and other requirements. 1-800-374-4543

Other Insurance Information Resources include: Pedia Hope. Call 1-703-757-HOPE

 

4. "Where can I find materials and books about my child’s special needs?"

Children with special needs may offer challenges in locating information and technical knowledge and support. Local parent resource centers may have library books and equipment available for families and providers. Technology can make a big difference for the child with disabilities, improving their active participation in the community. Adaptive or assistive technology is described in Federal legislation (P.L. 100-104). The Individual Family Services Plan (IFSP) and Individual Educational Plan (IEP) must include a statement on the benefits of any recommended assistive device or service.

 

5. " How do I find out about public health services offered in my area?"

Locating public services for the family with a child with special needs can be challenging in some communities. Local agencies may provide a wide range of services that may include assessment, education, counseling, dental, vision, AIDS information, family planning, prenatal care, nutritional services and general health information. They may also be a rich source for referral and linkage to County services. County services may include:

Health Care Services

County Health Centers

Community Health Centers

Planned Parenthood

Mental Health Access Teams

Conservatorship Programs

Programs specializing in clients with developmental or special needs


Social Services

Social Security (SSI)

Medical/Medicaid

Community Resource Centers

County Public Health and Social Assistance Programs


Mental Health & Counseling Services

Mental Health Access Teams/Local Mental Health Agencies

Local Genetic Counselors (often at Major Regional Hospitals/Clinics)

Family Enrichment Services

Catholic Charities Programs

Other Local Faith Community’s

Jewish Family and Children’s Services

Youth and Family Assistance Programs

Family Service Agencies

Abuse Prevention Agencies


Nutritional/Feeding Assistance

Women, Infants & Children (WIC)

La Leche League (Breastfeeding)

Nursing Mothers Counsel (Breastfeeding)

County Public Health Services/Nutrition Program

6. "How can I find a child care provider who understands my child’s special needs?"

Finding a day care provider for a child with special needs can be very difficult. the Americans with Disabilities Act prohibits discrimination against any child because of disability. Possible referrals for child care may include:

Early Head Start

Family Child Care Association

Childcare Coordinating Councils

Family Service Agency

Regional Centers

Local Day Care Provider Associations

 

 

References

Bezt, C.L., et al. (1994). Family Centered Nursing Care of Children. (2nd edition) Philadelphia: W. B. Saunders Company.

Block, C. et al. (1989). Home care for high risk infants the first year. Caring, 8(9): 11-17.

Brown, J., et al. (1998). Guidelines for Positive Oral Experiences. Available from: The Center for Family and Infant Interaction, Denver, CO.

Creskoff N. (1998). Investigating feeding problems. Newsletter of the Children’s Hospital for Physical Medicine and Rehabilitation, 1(2):1-3.

Fawer C.L., et al. (1987). Periventricular leukomalicia and neuro developmental outcome in pretem infants. Archives of the diseases of Childhood, 62(1):30-36.

Jackson, P.L. (1997). Information sheet for the primary care needs of children with hydrocephalus. Available from: the Hydrocephalus Association, 870 Market Street, Suite 995, San Francisco, CA 94102

Martin, K.L., (1997). Does My Child Have a Speech Problem? Chicago: Chicago Review Press.

Miller, F., & Bachrach, S. (1995). Cerebral Palsy: A Complete Guide to Caregiving. Baltimore, MD: The Johns Hopkins University Press.

Selzer, S.C., et al. (1992). Long-term neuropsychological of high risk infants with intracranial hemorrhage. Journal of Pediatric Psychology, 17(4): 407-22.

Wong, D.L., & Waley, L.F. (1993). Essentials of Pediatric Nursing. (4th edition) St Luis, MO: The Mosby Co.

Wong, D.L., & Waley, L.F. (1990). Clinical Manual of Pediatric Nursing. (3rd edition) St Luis, MO: The Mosby Co.Wildrick, D. 1997. Intraventricular hemorrhage and long-term outcome in premature infants. Journal or Neuroscience Nursing, 29(5):445-49.

Wolf, L.S., & Glass, R.P. (1992). Feeding and Swallowing Disorders of Infancy: Assessment and Management. Tuscon, AZ: Therapy Skill Builders

 

 

 

August 2001, Department of Special Education, California State University, Northridge