Children with Special Health Care Needs: Information for EMTs

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1 Children with Special Health Care Needs: Information for EMTs Presented by: Center for Learning and Leadership Oklahoma s University Center for Excellence in Developmental Disabilities (UCEDD) University of Oklahoma Health Sciences Center College of Medicine

2 Purpose of this Module The purpose of this module is to share considerations about emergency care from the perspectives of parents and caregivers of children with developmental disabilities and special health care needs, including those with chronic illnesses. The material in this module was developed through consulting with parents and caregivers about how to help emergency procedures go more smoothly. The module provides tips for engaging parents and caregivers during emergency assessment, treatment, and transport.

3 Introduction to Developmental Disabilities

4 What is a Developmental Disability? A developmental disability is a severe, chronic disability that: 1) is attributable to a physical or mental impairment or a combination of both, 2) occurs before age 22, 3) is likely to continue indefinitely, and 4) results in substantial functional limitations in three or more of the following areas: Self-care (dressing, bathing, eating, etc.) Receptive and expressive language Learning Mobility Self-direction (decision-making) Independent living Earning and managing an income About one in six U.S. children have a developmental disability. Sources: Developmental Disabilities Assistance and Bill of Rights Act of Boyle, C.A., et al.(2011). Trends in the prevalence of developmental disabilities in US children, Pediatrics. Retrieved from:

5 People with developmental disabilities are as diverse as any other section of the population. Disability occurs in families of any racial or ethnic background, socio-economic status, or from any geographic area.

6 What are Different Types of Developmental Disabilities? Intellectual Disabilities (new term for Mental Retardation) Intellectual disability is a term used when there are limits to a person s ability to learn at an expected level and function in daily life. Levels of intellectual disability vary greatly in children. Autism Spectrum Disorders (ASDs) Autism spectrum disorders (ASDs) are a group of developmental disabilities caused by a problem with the brain. ASDs can impact a person s functioning at different levels, from very mildly to severely. People with ASDs may have problems with social, emotional, and communication skills. Many people with ASDs also have different ways of learning, paying attention, or reacting to things. Sources: Centers for Disease Control and Prevention. Autism Spectrum Disorders. Retrieved from: Centers for Disease Control and Prevention. Intellectual Disability. Retrieved from:

7 What are Different Types of Developmental Disabilities? Sensory Processing Disorder (SPD) Sensory processing disorder (also known as sensory integration dysfunction) is a neurological disorder causing difficulties with taking in, processing, and responding to sensory information about the environment and from within the body. Children with SPD have difficulty acting upon information received through the senses, making everyday tasks a challenge. Cerebral Palsy Cerebral palsy is a catchall term for a variety of disorders that affect a child s ability to move and to maintain posture and balance. These disorders are caused by brain injury occurring before birth, during birth, or within the first few years after birth. The injury affects the brain s ability to control muscles and may cause other problems such as intellectual disability and seizures. Sources: Sensory Processing Disorder Foundation. (2013). About SPD. Retrieved from: Geralis, E. (1998). Children with Cerebral Palsy. 2 nd ed. Woodbine House: Bethesda, MD.

8 What are Different Types of Developmental Disabilities? Spina Bifida (Myelomeningocele) Spina bifida is caused by a neural tube defect that occurs very early in pregnancy and results in spinal cord damage. There are several types of spina bifida, but the most common type usually causes loss of sensation and movement in some parts of the body, which often creates mobility problems. Fetal Alcohol Spectrum Disorders (FASDs) Also known as fetal alcohol syndrome or fetal alcohol effects, FASDs refer to a congenital neurological deficit caused by prenatal exposure to alcohol. This condition can result in physical and intellectual disabilities, medical complications, as well as difficulties with behavior and learning. Sources: Lutkenhoff, M. (1999). Children with Spina Bifida. Woodbine House: Bethesda, MD. Centers for Disease Control and Prevention. Fetal Alcohol Spectrum Disorders. Retrieved from:

9 What are Different Types of Developmental Disabilities? Genetic Disorders A genetic disorder is caused by variations or mutations in genes or abnormalities in chromosomes. These disorders can cause physical, cognitive, and sensory problems. Examples: Down Syndrome Rett Syndrome Fragile X Syndrome Cystic Fibrosis Metabolic Disorders A metabolic disorder occurs when abnormal chemical reactions in your body disrupt the process of turning food into energy. Phenylketonuria (PKU) Lesch-Nyhan Syndrome Sources: National Institutes of Health. Genetic Disorders. Retrieved from: National Institutes of Health. Metabolic Disorders. Retrieved from:

10 Developmental Disabilities and Chronic Illness Children with developmental disabilities may also have chronic illnesses such as: Heart conditions Digestive disorders, such as Celiac Disease and Crohn s Disease Diabetes Seizure disorders Asthma Arthritis Respiratory distress disorder Sources: Centers for Disease Control and Prevention. (2012). Facts about Cerebral Palsy. Retrieved from: Skotko, B. (2011). Keeping Children and Adolescents with Down Syndrome Healthy. Presentation.

11 People First Language People First Language recognizes that people with disabilities are -- first and foremost -- people. It emphasizes each person s dignity, individuality and abilities. People First Language is preferred because it doesn t label people or perpetuate negative stereotypes. It refers to individuals with disabilities as people first, while describing their disability as a secondary characteristic. Source: Texas Council for Developmental Disabilities. People First Language.

12 People First Language People First Language Children with disabilities/special needs Children without disabilities/ typical children Child with an intellectual disability Child with autism Child with a seizure disorder vs. Stereotypical Language The handicapped/the disabled Normal children Mentally retarded child Autistic child/the autistic Epileptic

13 Engaging Parents and Caregivers

14 Engaging Parents and Caregivers Parents and caregivers are usually experts on their child s health because they have managed the health care of their child over his or her lifetime. Parents and caregivers are a vital resource to you when attending to the medical emergency and transporting the child. You cannot become an expert on every illness or disability. Therefore, it is important to seek information from the parent or caregiver when you assess, treat, and transport the child. Most parents of children with developmental disabilities and chronic illnesses only call emergency personnel when they are desperate. Their children may have frequent, urgent medical needs that they know how to manage themselves. Emergency calls often result when parents/caregivers have tried one or more interventions that have not worked. Keep in mind that the age of the child usually reflects the amount of experience the parent or caregiver has had managing the child s illness or disability. For example, a parent of a five-year-old child will likely know more about managing their child s health than a parent of a three-month-old child.

15 Engaging Parents and Caregivers: Primary Considerations Ask the parents/caregivers what the most urgent need is. Ask the parent/caregiver about the normal range for baseline vital signs for their child. Children with developmental disabilities or chronic illnesses may have baseline vital signs outside the typical range for a child their age. Ask the parent/caregiver about the child s responses to pain. They may not have typical responses to pain; however, that does not mean they are not experiencing pain. Ask the family members before interacting with the child. Parents/caregivers can tell you if there are any precautions to be taken before interacting with or touching the child.

16 Engaging Parents and Caregivers: Primary Considerations Ask parents/caregivers about the underlying diagnoses and possible complications and symptoms. Ask parents/caregivers what medications the child is taking. Ask if there are medications that are given for symptoms for which they are not commonly prescribed. (For instance, clonidine is commonly prescribed for high blood pressure but may be prescribed for symptoms related to autism.) Ask parents/caregivers if the child s medical equipment is working properly and what replacement parts are available in the home. Ask parents/caregivers if they have a written emergency medical summary that describes the child s important medical information.

17 To access the full Emergency Medical Summary, along with other materials, click the link within the module or visit our website at: emsc.asp

18 Review: Questions to Ask What should we attend to first? Are the child s current vital signs typical? Does the child have a typical response to pain? Are there any precautions I should take before interacting with the child? What medical conditions/disabilities does the child have? What medication is the child taking? Are they prescribed for their usual purposes? Is the child s equipment working properly? Do you have replacement parts or equipment? Do you have written emergency medical information?

19 Engaging Parents and Caregivers: Other Needed Supports Ask parents/caregivers about the child s method of communication and what he or she is communicating with body language, gestures, and language. Ask parents/caregivers about the child s sensitivities to sensory input, such as light and noise. Ask parents/caregivers how to operate the child s medical equipment.

20 Engaging Parents and Caregivers: Other Needed Supports Ask parents/caregivers about precautions for transporting and moving the child, including the child s range of mobility and how to best position the child. Parents/caregivers can help you keep the child calm during assessment, treatment, and transport. Allow the parent or caregiver to ride in the ambulance. Ask the parents/caregivers what their preferred hospital is (if appropriate).

21 Review: Questions to Ask How does the child communicate? What is he/she saying? Is the child sensitive to light or noise? Are there special instructions I should know for operating the medical equipment? What precautions should be taken when transporting your child? What is the best way to position the child? How can I keep the child calm? Do you want to ride in the ambulance? What is your hospital preference?

22 What Parents and Caregivers Want from EMTs Parents and caregivers want EMTs to: Include them in the care of their child Honor their expertise Be mindful of their child s physical and social needs Ask them questions Respect them Not feel obligated to know everything about the child s diagnosis or condition

23 Considerations for Rural Families Keep in mind that the travel time and possibility of unpaved roads may cause behavioral responses from children in the ambulance. Don t assume the closest hospital is where the child needs to be transported. If appropriate, ask parents/caregivers which hospital is preferable for their child s care.

24 General Considerations Airway Children with cerebral palsy often have low muscle tone, which affects their swallowing reflex and creates a susceptibility to choking. Many children with disabilities/chronic illnesses are susceptible to airway obstructions, especially children who have difficulty swallowing saliva, have tracheostomies, use home ventilators, or use continuous positive airway pressure (CPAP) devices. Shock Signs of early shock may be more difficult to detect in children with disabilities and chronic illnesses, and some children may have a limited tolerance for shock. Mobility/Positioning Children with developmental disabilities may have a limited range of motion or need to be positioned a certain way to avoid discomfort. Additionally, for children with low muscle tone, correct positioning is needed to ensure that they can breath and swallow adequately. Source: Georgia Emergency Medical Services for Children. Children with Special Health Care Needs.

25 Considerations Related to Autism Spectrum Disorders Note: Autism Spectrum Disorders (ASDs) present differently in children. These tips are general considerations based on the most common symptoms. Parents and caregivers are the best resource to determine how to most effectively interact with the child. Sensory/Behavioral Limit sensory stimulation as much as possible. For instance, turn off sirens and lights. Avoid touching the child unless it is necessary. When needed use a firm, stationary touch. If the child is displaying obsessive or repetitive behaviors, do not try to stop the behavior unless it poses a danger to self or others. Remain calm it will help the child stay calm. Sources: Center for Development and Disability. University of New Mexico. Tips for First Responders. Fourth ed. JFK Partners. University of Colorado Denver. Tips for Autism Spectrum Disorder Encounters.

26 Considerations Related to Autism Spectrum Disorders Communication Explain your actions calmly and have the parent/caregiver help you communicate what is happening. Changes in routine are often difficult for children with ASDs. When giving directions, use simple, concrete phrases with no more than one or two steps. Avoid idioms. For example, say stop instead of cut it out and we re leaving now instead of we re heading out. Ask the parent or caregiver to check the child for injuries. Some children with ASDs do not react typically to pain. Sources: Center for Development and Disability. University of New Mexico. Tips for First Responders. Fourth ed. JFK Partners. University of Colorado Denver. Tips for Autism Spectrum Disorder Encounters.

27 Considerations Related to Intellectual Disabilities Explain who you are and why you are there. Show your badge. When giving directions, use simple, concrete phrases with no more than one or two steps. Explain what you will be doing before doing it. As much as possible, use objects and pictures to communicate. For instance, point to any equipment you will use rather than just naming it. When possible, let the person know how long the procedure will last. Source: Center for Development and Disability. University of New Mexico. Tips for First Responders. Fourth ed.

28 Considerations Related to Down Syndrome Be aware that children with Down syndrome may have: Mild to moderate intellectual disability Hearing difficulties Vision difficulties Thyroid problems Digestive problems, such as Celiac Disease Seizure disorder Low muscle tone (hypotonia) Sources: National Institute of Child Health and Human Development. (2012). Down Syndrome Overview. Retrieved from: Skotko, B. (2011). Keeping Children and Adolescents with Down Syndrome Healthy. Presentation.

29 Considerations Related to Cerebral Palsy Children with cerebral palsy or other problems with mobility present special challenges related to immobilization and transport. Try to position the child in a way that is comfortable for them. The parent or caregiver can assist in determining the most comfortable position. Understand that a comfortable position for the child may not be a typically comfortable position. Use plenty of padding and support contracted limbs with blankets or towels if needed. Never force the child into an uncomfortable or painful position. Children with cerebral palsy often have contractures which limit their range of motion. As children with cerebral palsy often have low muscle tone and a weak swallowing reflex, be sure to position the child in a way that prevents him or her from choking. Ask the parent or caregiver to assist you in doing this. Source: Georgia Emergency Medical Services for Children. Children with Special Health Care Needs.

30 Considerations Related to Seizure Disorders When a child is having a seizure, protect the child from hurting him or herself and support breathing, airway and circulation. Never restrain a child when he or she is having a seizure. Move nearby objects away. Never place objects in the child s mouth. Watch for blood and other secretions in the mouth. Ask the parent or caregiver how this seizure is different from others the child has had before. Ask if there is medication for the child that needs to be administered during the seizure. Source: Georgia Emergency Medical Services for Children. Children with Special Health Care Needs.

31 Considerations Related to Spina Bifida (Myelomeningocele) Be aware that children with spina bifida may have: Loss of sensation and movement in some parts of the body, especially from the waist down An allergy to products containing latex Hydrocephalus (fluid on the brain), with or without a shunt A tethered spine, which can cause back pain, scoliosis, and leg/foot weakness Mobility difficulties Vision problems Tracheostomies Difficulty regulating body temperature Poor circulation Seizures Engage the parent or caregiver to assess: If there have been changes or problems related to urination or elimination. If there is a problem with a shunt (signs include swelling at the head and a distended abdomen). Source: Centers for Disease Control and Prevention. Spina Bifida, Health Issues & Treatments. Retrieved from:

32 Considerations Related to Tracheostomies Tracheostomies can become obstructed due to secretion buildup, improper airway positioning, incorrect insertion of the tube, or mechanical problems with the tube. Ask the parent or caregiver if the child is breathing normally. Make sure the tube is properly situated ask the parent or caregiver if there are any problems with the tube. If the tube needs to be replaced, ask the parent or caregiver if they have a spare that is the correct size. Source: Georgia Emergency Medical Services for Children. Children with Special Health Care Needs.

33 View our Video! The Center for Learning and Leadership has developed a video entitled, Parents Perspective on Emergency Medical Services: What I Wish Professionals Knew to supplement this module. To view the video, simply click the link within the module or visit our website at: This video provides information from parents of children with disabilities and special health care needs about their experience with emergency personnel. It provides input from these parents about what worked well, what could have been improved, and things they wish all emergency personnel knew about handling emergencies involving children with disabilities and special health care needs.

34 Additional materials for this module are available on our website at: For additional information contact: Center for Learning and Leadership (405) or 1 (800)

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