Children with Special Health Care Needs ECSE 641 April 2015

CSHCN Children with Special Health Care Needs : Those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who require health and related services of a type or amount beyond that required by children generally. Newacheck et al., 1998, p. 117

CSHCN O Development of technology services to support children with disabilities O More children dependent on medical technology O More technology in the general and special education classrooms O May require medical support services throughout the day

CSHCN O Successful integration of students who are dependent on medical technology requires: O Educational staff O Primary care physician O School nurse O Family members O Student (when appropriate)

Legal Issues O Education for All Handicapped Children Act of 1975 O IDEA 1990 O Individuals with Disabilities Education Improvement Act of 2004 (IDEIA)

Legal Issues - FAPE O Free, appropriate, public, education for all children with disabilities that interfere with their educational process O Transportation, physical therapy, occupational therapy, counseling, speech therapy, and health services O Student must qualify for special education O The service must be necessary for the student to benefit from special education

Legal Issues – Section 504 O Rehabilitation Act of 1973 O -an individual with a physical or mental impairment which substantially limits one or more of the person’s major life activities...(may include) caring for one’s self, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning, and or working Gelfman & Schwab, 2005, p. 337

Legal Issues – Section 504 O Child need not qualify for special education services. O Services provided include: physical access, school health services, modified physical education, transportation, and access to field trips and extracurricular activities O Gelfman & Schwab, 2005, p. 337

Legal Issues - ADA O Americans with Disabilities Act of 1990 O Access for individuals with disabilities to all public accommodations, including both public and private schools O Includes all employees and members of the public O Physical access and transportation

Special Health Care Procedures O If possible, encourage full participation or partial participation during health care procedures to encourage independence and self-determination O For instance: O Encourage student to climb onto nurses cot in preparation for a routine procedure O Have student hold items in preparation for a gastrostomy tube feeding

Special Health Care Procedures O Something as routine as position changes for a student with limited movement abilities may help PREVENT health issues. O Regular Position Changes may: O Facilitate drainage of lung secretions to help with breathing O Encourage a BM to avoid constipation O Prevent a sore from prolonged pressure on skin

Special Health Care Procedures O IHP- Individualized Health Care Plan O Developed and monitored by school nurse, often in conjunction with the students family and medical doctor(s). O Ensures that proper plans and safeguards, including emergency care plans, are in place.

General Health and Safety O Infection Control O Immunizations O Hepatitis B (HepB); Diphtheria, tetanus, acellular petussis (DTaP); Measles, Mumps, Rubella (MMR); Inactivated Polio Vaccine (IPV); Haemophilus influenza type b (Hib); Pneumococcal (PCV); Chickenpox O Other protections: Flu shot, Synagis (palivizumab) shot for RSV O Hand washing/Glove use during certain procedures O Disinfecting toys

Preventive Procedures – Skin Care O Skin Care O Monitor the skin of children O who spend the majority of their day in a wheelchair O who wear braces/splints O who have decreased sensation (i.e. MMC or SCI) O Allow for frequent position changes to avoid prolonged periods of pressure on bony prominences. O Keep skin clean and dry. Skin that is moist for prolonged periods is more vulnerable to injury and the development of sores.

Special Health Care Procedures O Regular Position Changes: Tumble Forms Tadpole Positioning System Tumble Forms Prone Wedge Rifton Prone Stander

Specialized Procedures - Seizures O Seizure- “A seizure involves the abnormal, excessive, and concurrent firing of a large population of cortical neurons. This results in the interruption of usual brain-generated electrical signals…” O Epilepsy- “…a condition involving two unprovoked seizures separated by 24 hours.” (Definitions from Batshaw, Pellegrino, and Roizen, 2007.)

Specialized Procedures -Seizures O Optimal control of seizures with medications is often difficult in children with cerebral palsy and developmental problems. O Medications used to control seizure activity are referred to as AED’s – Antiepileptic Drugs O phenytoin- Dilantin O carbamazepine – Tegretol O valproate – Depakene, Depakote

Specialized Procedures -Seizures O AED’s often have side effects and include: O Sleepiness O Decreased attention O Decreased memory O Difficulty producing speech O Unstable gait O Double vision O Cognitive impairment at high doses during treatment (long term effects unknown)

Specialized Procedures -Seizures O Other treatments O Surgery to remove seizure focus O VNS – Vagus Nerve Stimulation O Poor response to medications O Generalized Seizures (no focal point) O Hemispherectomy in extreme cases O Special diets (ketogenic diet) O Ensure adequate rest, avoid illness/infection, avoid “triggers”

Specialized Procedures -Seizures O A child with a known seizure disorder should have a care plan (IHP) in place with instructions specific to that child. Some children wear lightweight protective helmets. O Intervention will depend on seizure type and duration. O Once seizure activity has ended, document length of seizure and what occurred before and during the seizure.

Specialized Procedures During a Seizure O In general: O Place child on floor and turn to one side O Do not tightly restrain O Loosen clothing, especially around the neck O Do not insert anything in the mouth O Call EMS if: O Seizure lasts longer than 5 minutes O There is no history of seizures O A second seizure quickly occurs O Child does not regain consciousness

Specialized Procedures - Seizures O After the seizure activity has ended: O Monitor breathing- O if breathing has stopped, activate EMS and begin resuscitation efforts. O if student is breathing, roll to side and monitor

Specialized Procedures - Medications O Follow school district policies regarding administration of medications. O Be aware of medications your students are taking even if they do not receive them at school. O Be aware of medication side effects and precautions O i.e. Avoidance of sun exposure

Specialized Procedures – Alternative Feeding O Alternative forms of feeding are necessary for: O children unable to eat or drink anything by mouth (NPO) because of- O risk of aspiration, O abnormalities of the mouth, jaw, and/or upper GI tract, O extreme sensitivity issues O children unable to ingest sufficient amounts of food/fluids for adequate nutrition and hydration

Specialized Procedures – Alternative Feeding O Naso-gastric tube – NG tube O Gastrostomy tube – G-tube O Gastrostomy button – i.e Mic Key feeding tube O Jejunostomy tube – J- tube O G-J Tube O These are forms of enteral nutrition

Specialized Procedures – Alternative Feeding NG Tube Mic Key Feeding Tube Gastrostomy Tube

Specialized Procedures – Alternative Feeding O Formula, blended food, or liquids are administered through the tube. O The tube empties either into the stomach or the upper intestine. O Feedings may be continuous or intermittent O Feedings may be driven by gravity, pump, or syringe.

Specialized Procedures – Alternative Feeding O If possible, children should receive their feedings during the regular meal times or snack times. O Typically children are sitting or in an upright position during the tube feeding and remain upright for approximately one hour after the completion of the feeding.

Specialized Procedures- Alternative Feeding O A plan should be in place in the event of feeding tube failure or dislodgement. Usually an extra tube kit is kept at school or the child care facility. O If a gastrostomy tube dislodges, cover the stoma with clean gauze. Alert the school nurse or parent (follow the care plan). The tube should be replaced soon- within 2 hours. O A physician must replace a jejunostomy-tube.

Special Care Procedures- Respiratory Management O Trachea- air tube extending from the larynx into the lungs O Tracheotomy/Tracheostomy- the operation of opening into the trachea O Tracheostomy tube-the tube inserted into the opening in the trachea O “Artificial Nose”- warms and humidifies the air breathed in.

Special Care Procedures- Respiratory Management O Reasons a child may have a tracheostomy tube: O Obstruction of respiratory tract O Allows for long term assisted ventilation in cases of respiratory insufficiency from: O Conditions that affect the lungs O Deregulation of central controls for breathing (TBI) O Disease/disorder of chest wall/thorax O Allows for removal of secretions by suctioning

Special Care Procedures- Respiratory Management O Children with tracheostomy tubes, with or without mechanical ventilation, typically are accompanied to school with a nurse. O Routine procedures that may occur at school include: suctioning to remove secretions, cleaning the tracheostomy tube, care of the skin around tube, and changing the ties. Changing the tube is typically performed at home, but a spare tube is always kept with the child.

Special Care Procedures- Respiratory Management O Speaking valve- a special valve placed on the tracheostomy tube that allows the child to breath in, but then closes when the child breathes out, forcing air around the vocal cords and allowing the student to speak. O The Passy-Muir valve is often used with infants and young children.

Hydrocephalus Shunt

Signs of Shunt Malfunction From : A Teachers Guide to Hydrocephalus (2002). Hydrocephalus Association: San Francisco, California Vomiting Headache Vision problems Irritability and/or tiredness Personality change Loss of coordination or balance Swelling along the shunt tract Difficulty in waking up or staying awake Decline in academic performance Fever Redness along the shunt tract

Signs of shunt malfunction Additional signs from Snell, M. & Brown, F. (2006). Instruction of students with severe disabilities (6 th ed.) New Jersey: Pearson Publishing. O Change in appetite O Irritability O Swelling along path of shunt O Onset of or increased seizures O Neck pain O Onset of or increased spasticity O Changes in vision and eye movements

References O A Teachers Guide to Hydrocephalus (2002). Hydrocephalus Association: San Francisco, California O Batshaw, M., Pellegrino, L., & Roizen, N. (2007). Children with disabilities (6 th ed.) Baltimore: Paul H. Brookes Publishing O Snell, M. & Brown, F. (2006). Instruction of students with severe disabilities (6 th ed.) New Jersey: Pearson Publishing.