Medical Plan of Care
Children with developmental delays (DD) and intellectual disabilities (ID) may require a variety of medical interventions and supports from medical specialists, on top of their regular well-child care with their primary care physician.
STEP 1: Getting Comfortable with Going to the Doctor
The first step in your child’s medical plan of care is ensuring they are comfortable with going to the doctor. Children with DD/ID may need to be prepared before a new experience, especially an experience that could feel scary, like going to the doctor. Here are some tips that may help your child with a medical appointment.
Prior to the appointment, use social stories, books or videos to explain and show what happens during the medical visit.
Schedule the visit during the best time for the child.
Try to schedule the first appointment in the morning or after lunch break, to avoid stress related to waiting.
Bring another adult to care for your child during the visit to allow you time to talk to the provider.
Consider bringing the following items to the appointment: Snacks and drinks; Bubbles, preferred toys, books, games, or iPad to entertain or distract the child during exam or visit.
STEP 2: Maintain Well-Child Care
It is important to maintain your child’s well-child visits with your primary care physician. These visits include preventative regular checkups, vaccinations and health screenings for:
Growth
Vision
Hearing
Dental
Nutrition
Other health conditions
STEP 3: Evaluation and Treatment of Physical Health Conditions Associated with DD/ID
Children with DD/ID have a higher risk for developing certain physical health conditions that may require additional screenings, evaluation and treatment. Below you can find detailed information about these specific health conditions, prevention and plan of care.
- Weight/Nutrition
- Dental and Oral Health
- Vision
- Hearing Conditions
- Bones, Muscles and Joint Conditions
- Sleep
- Constipation
Weight/Nutrition
Dental and Oral Health
Vision
Hearing Conditions
Bones, Muscles and Joint Conditions
Sleep
Constipation
Areas of concern
Overweight, underweight and unbalanced nutrition.
Possible secondary problems
Heart problems, snoring, learning and behavior difficulties.
Signs or risk factors that could lead to weight issues
- Picky eater due to sensory processing difficulties related to taste, smell, and food textures
- Poor diet due to chewing and swallowing difficulties
- Not having enough exercise
- Lack of awareness of body weight
Additionally, there are many ways you can support your child’s healthy weight development at home, including
- Check your child’s weight regularly
- Keep your child and family on a healthy diet
- Maintain a consistent schedule with meals at the same time each day
- Give plenty of water and avoid giving soft drinks to your child
- Ensure your child gets at least 60 minutes of daily physical activity
- Set a sleep schedule to ensure your child gets good quality sleep
External Resources:
Healthy Active Living for Families, from American Academy of Pediatric
Areas of concern
Teeth cavities, gum problems, infection, missing or abnormal position of teeth.
Possible secondary problems
Trouble speaking, eating, learning and behavior problems due to tooth pain.
Risk factors that could lead to dental issues
- Lack of Vitamin D
- Unbalanced diet
- Medications
- Sensory processing difficulties causing difficulties brushing teeth
- Poor dental hygiene
Additionally, there are many ways you can support your child’s oral health at home, including
- Drinking tap water that contains fluoride
- Avoiding soft drinks and large amounts of sweets
- Brushing teeth for two minutes twice per day with fluoride toothpaste
- Visiting the dentist twice a year from the time the first tooth comes in
- Asking your child’s dentist to apply dental sealants when appropriate
External Resources:
- Oral Health, from American Academy of Pediatrics
- Children's Oral Health Basics, from CDC
- Preparing for the Dental Visit, from Autism Speaks
Areas of concern
Vision and eye problems
Risk factors
Family history of eye and vision problems, eye infections and trauma, certain infections before the baby was born, infections of the brain after birth, head trauma, certain genetic syndromes and metabolic disorders, diabetes, high Blood Pressure
Possible secondary problems
Learning, motor coordination, social skills difficulties and low self-confidence
Signs for possible vision issues
- Looking closely at objects
- Bumping into things
- Eyes that are misaligned (look crossed, turn out, or don't focus together)
- White or grayish white color in the pupil
- Eyes that flutter quickly from side to side or up and down
- Eye pain, itchiness, or discomfort reported by your child
- Redness in either eye that doesn't go away in a few days
- Eyes that are always watery
- Drooping eyelids
- Eyes that often appear overly sensitive to light
- Headaches
Additionally, there are many ways you can support your child’s healthy vision development at home, including:
- Decrease use of recreational home screens and electronics
- Allow good lighting during reading, drawing, and writing activities
- Schedule routine eye and vision check with your child’s primary care physician
- Check results for vision screening done by school
- Monitor for eye infection or trauma
External Resources
- Warning Signs of Vision Problems in Infants & Children, by American Academy of Pediatrics
- 20 Things to Know About Children's Eyes and Vision, by American Academy of Ophthalmology
- Blindness and Vision Fact Sheet, by the World Health Organization (WHO)
Areas of concern
Conductive hearing loss, sensorineural hearing loss, mixed hearing loss.
Risk factors
Family history of hearing problems, ear infections, snoring, large adenoids or tonsils, certain infections before the baby was born, infections of the brain after birth, medications, head trauma, certain genetic syndromes and metabolic disorders.
Possible secondary problems
Speech, language, communication, social skills, learning, behavior and attention difficulties and low self-confidence.
Signs for possible hearing issues
- Lack of response to sounds
- Ignores when name is called
- Lack of following instructions
- Language delay
- Unclear speech
- Watches TV or listens to music at a very high volume
- Speaks loudly
Additionally, there are many ways you can support your child’s healthy hearing development at home, including
- Check results of newborn hearing screening
- Schedule routine hearing checks with a pediatrician
- Check results of hearing screening done by school
- Follow up the doctor’s recommendations for the child’s ear infections
- Avoid exposure to loud sounds such as loud music or TV
External Resources:
- Hearing Loss in Children, by CDC
Areas of concern
Abnormal walking, muscles, back and joint problems.
Risk factors for bone, muscle and joint issues
Delay in starting to walk, poor muscle strength and balance, brain and genetic disorders.
Possible secondary problems
Difficulties with motor coordination, walking, and general ability to move.
Signs for possible bones, muscles and joint issues
- Limping
- Back or joint pain
- Delayed walking
- Asymmetric walking
- Difficulties or poor quality in performing gross motor activities: walking, running, climbing, jumping
Additionally, there are many ways you can support your child’s healthy movements at home, including
- Maintain regular physical activity
- Consider stretching
- Use comfortable shoes
External Resources:
- Kids and Their Bones: A Guide for Parents, by the National Institute of Health
Areas of concern
Difficulties falling asleep, waking up at night, restless sleep, short sleep duration, snoring, teeth grinding and sleep walking, night terrors.
Risk factors for sleep issues
Anxiety, ADHD, autism, obesity, seasonal allergies, large adenoids or tonsils, genetic syndrome, low muscle tone, low iron and vitamin D.
Possible secondary problems
Weight and growth problems, hyperactivity, short attention span, other behavior and learning problems. Children who snore may have apnea which are pauses in breathing that may cause decreased oxygenation of the brain with secondary lung and heart problems.
If your child snores or has restless sleep, your primary care physician may refer you to an ENT physician for a sleep study and other tests. Interventions may include behavioral therapies, medication, or treatment for sleep apnea.
If your child snores or has restless sleep, your primary care physician may refer you to an ENT physician for a sleep study and other tests. Interventions may include behavioral therapies, medication, or treatment for sleep apnea.
Additionally, there are many ways you can improve the quality of your child’s sleep such as
- Avoiding heavy exercise within 2 hours of bedtime
- Avoid use of caffeine drinks and electronics before bedtime
- No TV in the bedroom
- No access to electronics after bedtime
- Maintaining a comfortable room temperature
- Use of bed sheets with preferred texture
- Having a consistent daily sleep schedule
- Having a quiet bedtime routine, which could include: Stop using electronics 1 hour before bedtime, drink a cup of milk, take a warm bath or shower, brush teeth, get in bed and read a story or listen to quiet music to calm down
External Resources:
- Tips for better sleep, by American Academy of Pediatrics
- Sleep Strategies for Kids, by Sleep Foundation
- Sleep Tips for Family’s Mental Health, by American Academy of Pediatrics
Areas of concern
Infrequent bowel movements, straining when passing stool, passing hard stool.
Risk factors for constipation
Having selective diet, low muscular tone, low thyroid hormone levels, abnormalities of the bowel movements and structure.
Possible secondary problems
Weight, growth, behavior problems, delayed toilet training, soiling and infections of the bladder and kidney.
If you notice any of these signs, talk with your child’s primary care physician. Interventions may include changes in diet or exercise, behavior intervention, medications, or bowel cleansing.
If you notice any of these signs, talk with your child’s primary care physician. Interventions may include changes in diet or exercise, behavior intervention, medications, or bowel cleansing.
Additionally, there are many ways you can support your child to have healthy bowel movements at home, including
- High fiber diet with whole grains, fruits and vegetables
- Drinking a lot of water
- Ongoing physical exercise
- Sitting on the toilet shortly after a certain meal, every day and at the same time
External Resources
- Constipation in Children, by American Academy of Pediatrics
- Constipation in Children, by National Institute of Health
STEP 4: Evaluation and Treatment of Mental Health and Behavioral Conditions Associated with ID/DD
Children with DD/ID are at risk for certain mental health conditions, which may be screened, evaluated and treated by your physician or specialists. Below you can find detailed information about these specific health conditions, prevention and plan of care.
- Attention Deficit Hyperactivity Disorder (ADHD)
- Anxiety
- Depression
- Aggressive Behavior
- Wandering/Elopement
Attention Deficit Hyperactivity Disorder (ADHD)
Anxiety
Depression
Aggressive Behavior
Wandering/Elopement
Children with ADHD have difficulties paying attention to non-preferred activities and/or are hyperactive and impulsive. These difficulties may become more apparent once children go to school. The symptoms of ADHD are seen both at home and in school and may affect one or more of the following areas: learning, behavior and interaction with other children and family members, participation in group activities, and performance of daily living skills, such as getting dressed or chores such as cleaning their own room.
Children with untreated ADHD are at risk for having difficulty making friends and underachieving in school. As a result, they may develop poor self-esteem, and even anxiety and depression. Sensory processing difficulties may increase hyperactivity and decrease attention.
Children with untreated ADHD are at risk for having difficulty making friends and underachieving in school. As a result, they may develop poor self-esteem, and even anxiety and depression. Sensory processing difficulties may increase hyperactivity and decrease attention.
Intervention:
- Increase one-on-one attention and hands-on activities, decrease distractions during homework, maintain a schedule, routines and structured environments for consistency, prepare for transitions, and provide immediate and positive feedback.
- In school, children can receive accommodations for ADHD under the 504 Accommodation Plan or under their Individualized Education Plan (IEP). Such accommodation may include extra time for tests, preferential seating in the classroom and during tests, increased one-on-one attention, and more.
- Your primary care provider can provide guidance for behavior interventions and prescribe medication for treatment of ADHD.
- Referral to a child psychologist for home behavior modification and parent coaching may be helpful.
External Resources
- Understanding ADHD: Information for Parents, by American Academy of Pediatrics
- Protecting the Health of Children with ADHD, by CDC
Children with anxiety may display some of the following signs, including excessive worrying, difficulty separating from caregivers, easily overwhelmed, or difficulty being with large groups. Sometimes children may pull their hair, develop headaches, stomach aches or sleep problems, chew on objects, or pick on their nails or skin.
These difficulties are seen both at home and at school, and may affect learning, interaction with other children and family members, and participation in group activities. Children with untreated anxiety are at risk for under-achievement in school and may struggle to make friends. Sensory processing difficulties may increase anxiety.
These difficulties are seen both at home and at school, and may affect learning, interaction with other children and family members, and participation in group activities. Children with untreated anxiety are at risk for under-achievement in school and may struggle to make friends. Sensory processing difficulties may increase anxiety.
Intervention
- Parents and caregivers are encouraged to avoid triggers for anxiety. Additionally, consider using a visual schedule, routines, or highly structured environment to create consistency and prepare for transitions. Playing sports or engaging in other fun recreational activities, such as music and art, may also decrease anxiety.
- In school, children with anxiety would benefit from an IEP with accommodations, including a highly structured environment, use of positive feedback and preparation for transitions. These children may also receive counseling from a school counselor.
- Your primary care physician can provide guidance on medication and treatment. Your child may be referred to a child psychologist for behavior therapy and parent coaching or to a developmental behavioral pediatrician or a child psychiatrist for medication.
External Resources
- Anxiety and Depression in Children, by CDC
- Understanding Childhood Fears and Anxieties, by American Academy of Pediatrics
Children with depression may display excessive sadness, loss of enjoyment in their preferred activities, self-isolation, aggressive behavior, irritability, lack of energy, change in appetite and sleep patterns, and suicidal ideation or plan and threats to hurt others.
Children with untreated depression are at risk for under-achievement in school, difficulty making friends, and hurting themselves or others.
Children with untreated depression are at risk for under-achievement in school, difficulty making friends, and hurting themselves or others.
Intervention
- A child with depression would benefit from therapy with a school counselor or psychologist and may need medication from a child psychiatrist.
- If a child has suicidal ideation or a plan to hurt themselves or others, they will need an urgent psychiatric evaluation through the emergency room.
External Resources
Aggressive behaviors towards others and oneself can be caused by difficulties with communication and sensory processing. They can also be associated with mental health conditions, such as anxiety, depression, ADHD, and genetic disorders. These behaviors can also be triggered by physical health issues, such as constipation, dental issues or undiagnosed pain.
Children with untreated aggressive behaviors are at risk for difficulties making friends and hurting themselves or others.
Children with untreated aggressive behaviors are at risk for difficulties making friends and hurting themselves or others.
Intervention
- A child with aggressive behaviors would benefit from a school and home behavior intervention plan, working with a psychologist, and may need medication from a developmental behavioral pediatrician or a child psychiatrist.
- In addition, these children would benefit from addressing the underlying cause for the aggression. For example, improving communication skills and adequate school services to match the child’s needs, treating sensory processing difficulties, treating a medical cause for pain (e.g., dental problems, stomach aches) may prevent and decrease aggressive behaviors.
External Resources
- Behavior or Conduct Problems in Children, by CDC
- Disruptive Behavior Disorders, by American Academy of Pediatrics
Wandering by children with autism is common and can be dangerous. It also puts tremendous stress on families and caregivers. It is important to develop a comprehensive safety plan which includes wandering prevention strategies.
Intervention
- Secure your home e.g., by using a home security alarm system and placing hooks on doors to prevent your child from wandering away unnoticed
- Consider a locating device or GPS tracking system that can be worn on the wrist or ankle to be used to track your child
- Consider an ID bracelet containing the parent/caregiver’s name and contact information. It should also state that your child has autism and whether or not they are verbal
- Teach your child to swim and fence your home swimming pool if you have one
External resources
- Wandering Prevention Resources, by Autism Speaks