Healthy Living
Understanding medical and health services for children with Developmental Delay/Disability or Autism Specturm Disorder, managing my child’s healthcare, recognizing common health concerns, services and staying well.
Healthy development is important for all children. When your child is at risk for an intellectual/developmental delay/disability (I/DD) or autism (ASD), you may have many questions and concerns about common health concerns and how to access and navigate medical and health services for your child. Here is a list of possible questions to guide you through this domain.
How can I improve my child’s health and wellbeing?
Common Developmental Challenges and Concerns:
Sleep
How Much Sleep Does My Child Need?
Healthy sleep is very important to children/youth and their parents. Getting enough sleep affects our overall health and quality of life and is a critical piece of healthy child development. Although sleep needs vary from person to person, The American Academy of Sleep Medicine (AASM) provides some helpful guidelines regarding just how much sleep children need at different stages in their development.
Childhood Sleep Guidelines
https://www.healthychildren.org/English/healthy-living/sleep/Pages/healthy-sleep-habits-how-many-hours-does-your-child-need.aspx
How Do I Establish Safe and Healthy Sleep Habits for my Baby?
Most parents face challenges getting their infants and toddlers to bed and to sleep. Establishing healthy and safe sleep routines is very important to ensure that your baby sleeps safely and gets the amount of sleep s/he needs for healthy development and parents get the rest they need to have the energy to take care of their family.
American Academy of Pediatrics Safe Sleep Recommendations
https://www.aap.org/en-us/advocacy-and-policy/aap-health-initiatives/safe-sleep/Pages/Safe-Sleep-Recommendations.aspx
Video on Safe Sleep for Infants
https://youtu.be/AzA3joFgulo https://www.youtube.com/watch?v=OvLsgXH69rc
Nutrition and Eating
The development of healthy eating habits and maintaining a healthy weight are important for children’s growth. Good nutrition starts at birth and continues through childhood as families make healthy choices and develop habits that work within their family budget.
What can I do in my child’s first 2 years of life to start healthy nutrition?
https://www.cdc.gov/nutrition/InfantandToddlerNutrition/index.html
What tips can help my child maintain a healthy weight?
https://www.cdc.gov/healthyweight/children/index.html
https://www.mayoclinic.org/healthy-lifestyle/childrens-health/in-depth/nutrition-for-kids/art-20049335
https://www.healthychildren.org/English/healthy-living/nutrition/Pages/default.aspx
How can I help my child with special needs develop a healthy eating routine?
https://www.urmc.rochester.edu/childrens-hospital/nutrition/special-needs.aspx
https://www.autismspeaks.org/dental-care (Toolkits available once you login to the site) AAP articles and tips: “Diet tips to prevent dental problems”
https://www.healthychildren.org/English/healthy-living/oral-health/Pages/Diet-Tips-to-Prevent-Dental-Problems.aspx
When should I be concerned that my child with autism spectrum disorder may have feeding issues and how can I help my child at home?
https://www.autismspeaks.org/tool-kit/atnair-p-guide-exploring-feeding-behavior-autism
What strategies can we use at home as a family to maintain healthy eating styles that fit within our daily routine and budget?
https://www.choosemyplate.gov/browse-by-audience/view-all-audiences/families
How can I help my child stay at a healthy weight?
https://www.nhlbi.nih.gov/health/educational/wecan/
Where can I learn more information about eating disorders and children?
https://kidshealth.org/en/parents/eating-disorders.html
What should I do if my child has difficulty feeding or swallowing?
https://www.asha.org/public/speech/swallowing/Feeding-and-Swallowing-Disorders-in-Children/
Physical Activity and Motor Skills
Physical activity is as important for children who have disabilities as it is for any child – it improves physical health and overall well-being. Sometimes children with disabilities are more restricted in their participation, have lower levels of fitness, and have higher levels of being overweight than their peers without disabilities. When planning activities, parents must consider overall health status, individual activity preferences, safety precautions, and availability of appropriate programs and equipment (AAP). Children whose disability affects their mobility can benefit from assistive technologies and activities geared towards their needs.
What are the stages for physical development and movement for children from birth through age 5?
If you have concerns about your child’s physical development, see the milestones (along with a tracker app)
https://www.cdc.gov/ncbddd/actearly/milestones/index.html
How can I help my child with a disability be active and included in physical activities?
Learn about the benefits of physical activity and barriers for children who have disabilities as well as tips for inclusion in school physical education by type of disability.
https://www.actionforhealthykids.org/including-all-children-health-for-kids-with-disabilities/#
https://www.autismspeaks.org/physical-fitness
What kinds of sports can my child with a developmental delay/disability, ASD or mobility issues take part in?
Sports for children with physical disabilities – leagues, sports programs and other resources for children with physical disabilities.
Check with your county’s Parks and Recreation Department
Bridge to Sports II: https://www.bridge2sports.org/
A local option is Special Olympics North Carolina. This organization helps people with disabilities of all ages participate in sports and physical activity. It is also a helpful source of social support for individuals and their families. https://sonc.net/
See Kids Quest at CDC for the Mobility Fact Check-up and Questions
https://www.cdc.gov/ncbddd/kids/mobility.html
What are the requirements for physical education in public schools for children with disabilities?
The requirements in IDEA and resources lists
https://www.wrightslaw.com/info/pe.index.htm
What are some fun learning activities I can do with my child who has a developmental disability?
Activities for preschool children
https://tats.ucf.edu/wp-content/uploads/sites/9/2018/05/adaptingactivitiesand_materialsec-1.pdf
Games and Activities for Children with Special Needs and Autism
https://www.unicef.org/parenting/child-care/10-playful-educational-activities-children-disabilities
How can my child with a disability attend summer camp that meets my child’s needs?
https://www.ultimatecampresource.com/camp-games/adaptive-or-special-needs-games/
Family Support Network™ of North Carolina Summer Camp Directory –
https://fsp.unc.edu/summer-camp (See Recreation section for more)
Where can I learn about assistive technology that can help my child sit, stand and move?
Some supports may be available through your child’s school program if related to education/learning. You can ask the IEP team, the school physical or occupational therapist or find contacts at the NC Department of Public Instruction.
https://sites.google.com/dpi.nc.gov/assistive-technology-ec/at-home?authuser=1
The NC Assistive Technology Program provides consultation, demonstration, short-term loans, and guidance on the use of technology.(See Community Living section for more)
https://www.ncdhhs.gov/divisions/vocational-rehabilitation-services/north-carolina-assistive-technology-program
Communication/Language
Communication is the way your child interacts with other people. The way your child communicates can be through play verbally (using words) or non-verbally using eye contact, gestures, facial expressions and touch.
What is typical communication development for children ages birth-5?
English: https://www.asha.org/public/speech/development/chart/
Spanish: https://www.asha.org/public/speech/Spanish/Que-tal-habla-y-oye-su-nino/
What should I expect for my child’s speech and language development?
https://www.asha.org/public/Early-Identification-of-Speech-Language-and-Hearing-Disorders/
What should I expect for my school age child’s communication development?
English: https://www.asha.org/public/speech/development/communicationdevelopment/
Spanish: https://www.asha.org/public/speech/Spanish/Desarrollo-de-la-Comunicacion-Infantil/
Where can I learn more about assistive technology or augmentative and alternative communication (AAC) that may help my child communicate better?
Some supports may be available through your child’s school program if related to education/learning. You can ask the IEP team, the school speech and language therapist or find contacts at the NC Department of Public Instruction at: https://sites.google.com/dpi.nc.gov/assistive-technology-ec/at-home?authuser=1
The NC Assistive Technology Program provides consultation, demonstration, short-term loans, and guidance on the use of technology:
https://www.ncdhhs.gov/divisions/vocational-rehabilitation-services/north-carolina-assistive-technology-program
Dental Care and Oral Health
What is the Connection between oral health and overall health?
Good oral health (teeth, gums, and mouth) is important to overall health. Poor oral health may affect a person’s ability to eat, sleep, and function without pain. Poor oral health may also contribute to other physical illnesses.
Children with developmental delay/disabilities including autism, often have challenges in their abilities to brush their teeth, making them more likely to have unmet dental needs.
Why is it so hard to find a dentist to treat my child with developmental delay/disabilities including autism?
Pediatric dentists have received specialized training to identify and treat childhood dental and oral health issues, including those related to developmental delay/disabilities. Finding a dentist who is right for your child can take time. Often word of mouth from other parents is a good way to begin.
How do I find a dentist for my Child?
Find a Pediatric Dentist
https://www.aapd.org/publications/find-a-pd/
Finding the Right Dental Home Checklist:
English:https://publichealth.nc.gov/wch/doc/families/DentalHomeChecklist-102119-WEB.pdf
Spanish: https://publichealth.nc.gov/wch/doc/families/LLTS-DentalHomeChecklist-WebUnprotected-SPA.pdf
Finding the Right Dental Home for your child with Autism
https://www.autismspeaks.org/tool-kit-excerpt/preparing-dental-visit (Please note: Toolkits available once you login to the site)
https://www.autismspeaks.org/dental-care (Please note: Toolkits available once you login to the site)
Modeling Video: https://www.youtube.com/watch?v=s_n1aZy1NV8
AAP articles and tips: “Diet tips to prevent dental problems” – https://www.healthychildren.org/English/healthy-living/oral-health/Pages/Diet-Tips-to-Prevent-Dental-Problems.aspx
Frequently Asked Questions About Dental Health:
https://www.aapd.org/resources/parent/faq/
Hearing Development
What should I know about my child’s hearing development?
https://www.asha.org/public/hearing/Effects-of-Hearing-Loss-on-Development/
What should I do if I have concerns about my child’s hearing or my child failed a newborn hearing screen?
https://www.ehdi-pals.org/SmartTool/EP_SmartTool.aspx
https://ncnewbornhearing.dph.ncdhhs.gov/Parents.asp
Eye Care and Vision Health
Understanding your child’s vision
https://www.asha.org/public/hearing/Effects-of-Hearing-Loss-on-Development/
Vision issues for children with special needs
https://www.optometrists.org/childrens-vision/vision-therapy-for-special-needs/vision-and-special-needs/
Computer/Tablet/TV Screen Time
Screen time is the amount of time spent using a device with a screen such as a smartphone, computer, television, or video game console. Studies show that screen time directly impacts child development, mental and physical health. The positive or negative health effects of screen time are influenced by levels and content of exposure.
www.Kidshealth.org
Is it okay for my infant/toddler to watch TV programs and play video games that are specifically developed for early learning?
Most of a baby’s brain development happens in the first 2 years of life. That’s why it’s so important for babies and toddlers to explore their environment and experience many sights, sounds, tastes, and textures. Interacting and playing with others helps children learn about the world around them. For that reason, the American Academy of Pediatrics (AAP) recommends limiting the amount of time that babies and toddlers spend in front of a screen. That’s good advice — but in today’s world, it can be tough to keep babies and toddlers away from all the TVs, tablets, computers, smartphones, and gaming systems they’ll see.
Can my child have too much screen time?
The risks of too much screen time include negative health effects on sleep, attention, and learning; It is important to maintain enough physical activity, healthy nutrition, good sleep hygiene, and a nurturing social environment.
How much screen time is right for my child?
The American Academy of Pediatrics (AAP) issued these guidelines for screen time:
Babies and toddlers up to 18 months old: No screen time, with the exception of video-chatting with family and friends.https://kidshealth.org/MainLine/en/parents/screentime-baby-todd.html?WT.ac=p-ra
Toddlers 18 months to 24 months: Some screen time with a parent or caregiver.
Preschoolers: No more than 1 hour a day of educational programming, together with a parent or other caregiver who can help them understand what they’re seeing.
Kids and teens 5 to 18 years: Parents should place consistent limits on screen time, which includes TV, social media, and video games. Media should not take the place of getting enough sleep and being physically active.
Develop a Family Media Use Plan with specific guidelines for each child and parent.
www.healthychildren.org/MediaUsePlan
Social-Emotional Wellbeing
Children’s social and emotional health is closely linked to their overall development and learning. These important skills start to develop very early in infancy, help children connect with others, and build healthy relationships. Parents are critical in nurturing social-emotional skills so that children feel safe and learn to recognize and express their emotions. It’s important to remember that there may be cultural differences in the social-emotional skills expressed by children. This may be due in part to parent expectations, attitudes and family and community interactions. We should always take this into consideration when thinking about a child’s behavior and social relationships.
You can learn more about this important developmental area
https://pathways.org/topics-of-development/social-emotional/
This video shows ways that you can set age-appropriate limits for young children learning to cope with their emotions:
https://www.zerotothree.org/resources/29-tantrums-defiance-aggression-oh-my
How do I know if my child is meeting social-emotional milestones?
Social-emotional growth continues into adulthood but there are certain skills that we should see in young children. Parents can view free checklists to see if their child is on track for his/her age: CDC’s Learn the Signs. Act Early
https://www.cdc.gov/ncbddd/actearly/milestones/index.html
https://pathways.org/?gclid=EAIaIQobChMI2oOayNnS7AIVIgiICR3K9AqWEAAYASAAEgJohPD_BwE
What is meant by the term ‘Infant Mental Health’?
“Infant mental health” refers to how well a child develops socially and emotionally from birth to three, especially as they learn to experience, manage, and express emotions; form close and secure interpersonal relationships; and explore and master the environment and learn — all in the context of family, community, and cultural expectations.
NCPMI (National Center for Pyramid Model Innovations – Making Life Easier: https://challengingbehavior.cbcs.usf.edu/Implementation/family.html
When should I worry about my child’s social and emotional development?
Children develop differently, have unique personalities and may show strong emotions and challenging behaviors at times. It can be hard to know when a behavior may indicate that there is a problem or if a child needs more support; it doesn’t always mean that there is a mental health issue. Learning more about social and emotional development can help parents identify when there might be a concern.
https://healthyfamilies.beyondblue.org.au/age-1-5/mental-health-issues
Be sure to talk to others who know your child well and may see him/her in different situations such as providers, teachers and your child’s doctor.
My child has a developmental disability. Can my child also have a social-emotional, behavioral or mental health problem?
The answer is yes. All of these can and do occur in some children who have a diagnosed developmental disability. While developmental disabilities such as autism include social and relationship concerns as a key symptom; it’s important to monitor for other concerns such as anxiety, depression, aggression, self-injury, etc. In addition, children with intellectual disability/developmental disabilities (I/DD) can be impacted by life events just as typically developing children may be (e.g., moving, death in family, birth of sibling, homelessness, abuse, hunger). If there are significant changes or events that occur, it’s critical to watch for any changes in your child’s behavior, sleep and eating habits, and to give them a chance to express their fears or worries. There are professionals who can help work with you and your family such as a psychologist or social worker and you can always share your concern with your child’s doctor. If you are concerned that your child is exhibiting social-emotional, behavioral, or mental health challenges, your child’s doctor can help you make a plan for how to move forward. If your child has already been diagnosed with both a mental health challenge and a developmental disability (sometimes referred to as a co-occurring condition or dual diagnosis), reach out to your local LME/MCO to find out what types of providers or services may be helpful for your family.
Child Behavior
Parenting a child can be one of life’s most rewarding and important roles. However, it can be challenging at times to understand and deal with your child’s behavior. As children become more independent, they may refuse to do what is asked of them, talk back to adults and push the limits of our patience. As parents, we need to teach our children in a positive way to respond and follow social and legal rules at home, at school and in the community so that they can be successful in life.
How can I help my child learn positive behaviors?
There are many ways to teach children what is expected of them. Positive parenting behaviors can include:
– Model behaviors you would like to see in your children.
– Notice good behavior and praise it.
– Understand where your children are developmentally.
– Set clear and realistic expectations for your children that are developmentally appropriate.
– Build structure and routines in your children’s day.
– Use discipline strategies to guide and teach instead of punish.
– Be calm and consistent when disciplining your children.
– Understand that a child’s negative behaviors have benefited them in some way in the past.
– Use repetition to continually reinforce good behavior.
– Be prepared—anticipate and plan for situations and your children’s behavior.
– Remain cool, calm, and collected.
https://downloads.aap.org/AAP/PDF/ttb_bring_out_best.pdf?_ga=2.219949529.1981909017.1657134345-405001644.1655130623 (English)
https://downloads.aap.org/AAP/PDF/ttb_bring_out_best_spanish.pdf?_ga=2.219949529.1981909017.1657134345-405001644.1655130623 (Spanish)
Other suggestions for parents can be found at:
https://www.healthychildren.org/English/family-life/family-dynamics/communication-discipline/Pages/How-to-Shape-Manage-Young-Child-Behavior.aspx
https://patiented.solutions.aap.org/handout.aspx?gbosid=166265
When should I be concerned about my child’s behavior?
Most children will, at times, test the limits of situations and want to become independent and be in control. This may result in behaviors such as temper tantrums, inappropriate language, and ignoring of rules and requests. Some of these behaviors can be developmentally appropriate and temporary. It’s important to monitor children’s behaviors to determine if they are something to be concerned about. For example, most children will have temper tantrums at some point. If concerned, think about them in terms of frequency (how often?), intensity (how bad?) and duration (how long?). This information can be discussed with your child’s doctor or nurse.
There are other behaviors that can be typical, but if extreme, can indicate a developmental concern. Behaviors such as inattention and high activity could be suggestive of Attention Deficit Disorder (ADD) or Attention Deficit with Hyperactivity Disorder (ADHD) and can possibly impact learning and safety. Other behaviors such as repetitive hand or finger movements, unusual sensory interests and atypical play with object may need to be discussed with your child’s doctor or nurse to see if they are typical or possibly a symptom of an autism spectrum disorder (ASD).
Any time you have a concern or question about your child’s behavior, you should talk with the doctor or nurse.
You can find more information about typical or concerning behavior at:
https://www.healthychildren.org/English/family-life/family-dynamics/communication-discipline/Pages/Normal-Child-Behavior.aspx
Healthy Sexuality Development
Every person is born with sexual needs and feelings. This includes our Autism Spectrum community and others with special needs. Healthy sexual development works best if it begins in early childhood and continues through adolescence and adulthood. With ongoing education many can learn relevant and appropriate behaviors that relate to their individual sexuality needs.
How do I know the difference between what is “normal” sexual behavior in my child or if there may be a problem?
“Sexual Behaviors in Young Children: What’s Normal, What’s Not?” found on the American Academy of Pediatrics (AAP) website is for children 2-6 years old.
https://www.healthychildren.org/English/ages-stages/preschool/Pages/Sexual-Behaviors-Young-Children.aspx
Additional resources related to this topic also found on the AAP website are: “Gender Identity”, “Body Safety” and “Potty Talk”.
https://services.aap.org/en/search/?context=Healthy%20Children&source=Healthychildren.org&lang=English&k=sexuality&s=
Learning about bodies and body parts can help your child with autism spectrum disorder understand and feel comfortable with their body. It also lays the groundwork for teaching your child about personal boundaries and safety, including good and bad touch.
https://raisingchildren.net.au/autism/development/physical-development/bodies-boundaries
Webinar, “Basics of Sexuality Education” created by Autism Society of North Carolina (ASNC) Clinical Department
https://www.autismsociety-nc.org/asncwebinar/the-basics-of-sexuality-education/ (Please note: Webinars are available once you log in to the site)
Social Determinants of Health (Healthy Lifestyles)
Social Determinants of Health (SDOH) are conditions in your daily life that may have an impact on your child and family’s overall health. SDOH can include things that you may have concerns about, like not having enough food for your family, safe and affordable housing, unemployment, lack of access to care for your child or other family members, or domestic violence. These types of issues or concerns can have profound impact on your family’s overall physical, emotional, and mental health. Do not be concerned that any of these individuals or organizations are going to “take your children away”, in fact they are here to help you and your family.
What will happen if I tell my pediatrician, nurse, or family doctor that I am having trouble with any of these issues?
Your pediatric or family care practice will work with you to help identify and access resources in the community that can help you with your concerns. This might include referrals to both formal and informal service agencies in your community that can assist you.
Where can I find resources to help me address concerns related to social determinants of health?
North Carolina Health and Human Services – County department of social services assists individuals and families with basic needs like food, housing, Medicaid, food stamps, emergency assistance.
https://www.ncdhhs.gov/divisions/social-services/local-dss-directory
North Carolina Health and Human Services – Public Health Division for Children with Special Health Care Needs (CYSHCN) – Focused on children and youth who have or are at risk for chronic physical, developmental, behavioral or emotional conditions and need health-related services beyond those generally required by children.
https://publichealth.nc.gov/wch/families/cyshcn.htm
NC Children’s Services – Provides health care, financial assistance and access to nutrition programs for children who require extra support.
https://www.ncdhhs.gov/assistance/childrens-services
North Carolina Health and Human Services – Mental Health and Substance Abuse Services
https://www.ncdhhs.gov/assistance/mental-health-and-substance-abuse
NC360/ United Way of NC – Assistance with basic services, such as housing, heat, electricity, food, transportation, employment, and other essential services.
https://www.unitedwaync.org/nc211
Aunt Bertha – Provides referral to a broad array of services and resources, including housing, food, rent assistance, employment assistance, and help with other essential services.
https://www.auntbertha.com/
NC Women and Youth Council – Women and Youth Domestic and Sexual Abuse Concerns
https://ncadmin.nc.gov/about-doa/divisions/council-for-women
Navigating and Managing Health Care
Understanding Types of Health Care
What are the Different Types of Health Care?
Primary care is the first-level of comprehensive personal health care services providing overall care for children and families. Primary care includes health promotion, disease prevention, health maintenance, counseling, patient education, screening, diagnosis and treatment of acute and chronic illnesses. Comprehensive primary care covers physical, mental, and behavioral health. Primary care for children and adolescents is routinely provided by pediatricians, nurses, and family doctors.
Specialty care means advanced medically necessary care and treatment of specific physical, mental or behavioral health conditions, or those conditions that may manifest in particular ages or subpopulations, that are provided by a specialist in coordination with a pediatrician, nurse, or family doctor.
Urgent Care/Emergency Care Urgent Care is available for care after hours and for non-life threatening conditions. If your condition isn’t serious or life-threatening, you can be seen more quickly at less cost.
Emergency Care is designed to treat urgent, acute and life threatening conditions and aren’t the place for routine care or minor ailments. If you feel you are dealing with a health emergency, call 911 or go to the emergency room right away.
Should I take my child to the Pediatrician, Nurse, or to the Family Doctor for Primary Care?
Pediatricians focus on treating children from birth until adulthood (Birth-age 21). This gives them in-depth understanding of a child’s health needs, like behavioral issues and how to care for a child’s growing, developing body.
Family physicians take care of patients of all ages, from kids to seniors and have general knowledge of a wide variety of health care concerns and can see the entire family regardless of age.
American Academy of Pediatrics (AAP)
Find a Pediatrician
Kids Health
https://kidshealth.org/en/parents/find-ped.html
American Academy of Family Physicians
https://familydoctor.org/choosing-a-family-doctor/
Should I take my child to the emergency room or an Urgent Care?
https://www.hopkinsmedicine.org/health/wellness-and-prevention/urgent-care-versus-the-er-a-pediatrician-offers-tips-on-making-the-right-choice
What to expect at my child’s medical appointments (labs, dental, medical, therapy, telehealth)
For individuals with developmental delay/disabilities including autism and their caregivers, going to the doctor can be a stressful situation. Individuals may not be able to communicate about health problems they are experiencing. Even if they are healthy, they may be anxious about the unfamiliar experience of going to a medical professional (doctor, dentist, or specialist) and undergoing procedures. Families may be asked to conduct virtual (telehealth) medical appointments. It is important to prepare for upcoming medical appointments. Your families’ preparation may look different depending if your visit is face to face or a telehealth appointment.
KidsHealth, Doctors & Hospitals
https://kidshealth.org/en/parents/system/?WT.ac=p-nav-system#catdoctor
Talking to Your Child’s Doctor
https://kidshealth.org/en/parents/talk-doctor.html?WT.ac=ctg#catdoctor
NCDHHS North Carolina Department of Health and Human Services (NCDHHS) – Pediatric Health Care: Exams and Treatment for Children
https://www.ncdhhs.gov/assistance/childrens-services/pediatric-health-care
Tips with a special focus for Children with Autism
“Autism and Health: Getting the Most out of Your Health Care” toolkit is designed to help improve these experiences.
https://www.autismsociety-nc.org/wp-content/uploads/Medical-Toolkit_2019.pdf
Autism Speaks, Autism Treatment Network (ATN): “Visual Supports Ease Medical Visits for Kids with Autism”
https://www.autismspeaks.org/science-blog/atnwork-visual-supports-ease-medical-visits-kids-autism
“Autism and the doctor visit: Communication tips for success”
https://www.autismspeaks.org/expert-opinion/autism-and-doctor-visit-communication-tips-success
Tips for Managing Telehealth Appointments
Tips for Telehealth
https://www.pacer.org/health/telehealth.asp
https://familyvoices.org/telehealth/curriculum/ (English and Spanish)
Preparing for a Successful Telehealth Visit Checklist- Family Voices
https://familyvoices.org/new-family-voices-telehealth-checklist-worksheet
Telehealth Definitions
https://familyvoices.org/telehealth/definitions/
What are the rights and responsibilities for my family with telehealth?
https://familyvoices.org/wp-content/uploads/2021/01/CYSHCN-Family-Rights-and-Responsibilities-Telehealth_1.26.21.pdf
Tips for managing virtual meetings with professionals and your child’s medical appointments
https://ectacenter.org/topics/disaster/ti-service.asp#familyprep
What is a medical health home?
A medical home is a family-centered, team-based approach to providing comprehensive health care for children and adults. A medical home can improve the health and well-being of the individual with a disability and reduce the stress on families and other caregivers.
https://medicalhomeinfo.aap.org/overview/Documents/AAPMedicalHomeParents.pdf
Pacer Center, The Medical Home Principle, A family-centered, coordinated care approach for your child or young adult with special health care needs or disabilities
https://www.pacer.org/health/medicalhome.asp
What is Family Navigation?
Family Navigation (FN) is a model of individualized assistance to parents/caregivers of children who have or are at risk for developmental disabilities including autism spectrum disorder to help families navigate both formal and informal service systems. Families of children with I/DD or autism often experience challenges navigating multiple systems to access services for their child and family.
Who are Family Navigators?
Family Navigators work in a variety of settings like pediatricians’ offices, hospitals, or other specialty practices or agencies that work with children with I/DD or Autism. Family Navigators may be parents and caregivers of a child with I/DD or Autism who work for community organizations that support families who have children with I/DD or Autism. Other names for family navigators may be Family Support Coordinators, Family Partners, Practice Navigators, Parent Advocates, Parent Liaisons, Family Advisors, and Service Coordinators.
What do Family Navigators do?
Family Navigators help families make informed decisions by educating them about systems, facilitating effective communication between families/caregivers and providers, and help to ensure that family needs are met. Family Navigators provide social and emotional support to reduce feelings of isolation and hopelessness. Family Navigators employ strength-based, culturally responsive approaches to help families recognize their own strengths and abilities and help families gain the knowledge and skills needed to be self-empowered, strong advocates to promote the best outcomes for their child with I/DD or autism and their family.
Am I eligible for all family navigation services?
Some services are available to all and some have eligibility criteria. To find out more about the types of navigation offered, you can talk to your doctor/nurse, child care provider, or teacher. You can also see the list below.
Family Support NetworkTM of North Carolina – https://fsnnc.org
Autism Society of North Carolina – https://www.autismsociety-nc.org/talk-with-a-specialist/
Children’s Developmental Services Agency (CDSA) – https://beearly.nc.gov/index.php/contact/cdsa
Community Care of North Carolina (CCNC) – https://www.communitycarenc.org/
Care Management for At Risk Children (CMARC) – https://medicaid.ncdhhs.gov/transformation/care-management/care-management-risk-children-cmarc
Local Management Entities/Managed Care Organizations (LME/MCO) – https://www.ncdhhs.gov/providers/lme-mco-directory
Other Family Navigation Resources
Autism NavigatorTM – a website collection of information, resources and tools that uses videos to assist families in early detection of autism in toddlers and young children and how to support them.
https://autismnavigator.com/
What Types of Health Insurance are Available in North Carolina?
Having health insurance is a good way to help manage your health care costs. There are numerous options to gaining health insurance including individual or family insurance, employer sponsored insurance, or public options (Medicare, Medicaid). Because there are differences across plans, it is helpful to think about whether you want to choose your primary doctor (or one is assigned to you), where you receive your care, whether certain doctors/clinics are in your network paid for by your insurer, and whether vision, dental, and prescription care are covered. It’s also helpful to look at each plan to consider the costs, deductibles, benefits, and copayments required.
For individual (or family) insurance, North Carolina uses the federally run health insurance exchange through the HealthCare.gov website. The exchange is the only place where you may be able to get subsidies that can help with your monthly premiums and help reduce out-of-pocket expenses. When you can enroll in new programs, renew, or make changes in current programs typically occurs in October.
The different types of health insurance plans include:
Health maintenance organizations (HMOs)
An HMO is a medical insurance group that provides health services for an annual fee. It serves as a link between the patient and health care providers (hospitals, doctors, etc.) and provides or arranges services. The fee for an HMO is likely less than a PPO and you will be assigned a provider who manages your care.
Preferred provider organizations (PPOs)
A PPO is a medical insurance group that provides health services for an annual fee. The fees may be higher than for an HMO, but you can choose your physician and location of care.
Exclusive provider organizations (EPOs)
An EPO allows more freedom than an HMO in deciding your health care providers and no referral for a specialist is needed. Typically, a lower premium than an HMO is available, but if you see a provider out of network, you will have to pay the costs.
Point-of-service (POS) plans
POS plans blend aspects of PPOs and HMOs.
High-deductible health plans (HDHPs), which may be linked to health savings accounts.
Medicare. For people 65+ or those who qualify due to a disability or special situation.
Medicaid. This is a federal and state program that helps with healthcare costs for some people with limited income and resources and those with eligible disabilities.
You can see if you qualify for Medicaid by visiting the Medicaid website or by filling out an application in the Health Insurance Marketplace.
https://www.hhs.gov/answers/medicare-and-medicaid/who-is-eligible-for-medicaid/index.html
There are Medicaid programs that specifically assist children:
Children’s Health Insurance Program (CHIP) – The Children’s Health Insurance Program (CHIP) provides health coverage (i.e., routine checkups, immunizations, dental care) to eligible children 18 years and under, through both Medicaid and separate CHIP programs. https://www.insurekidsnow.gov/coverage/nc/index.html
Early Periodic Screening Diagnostic and Treatment Medicaid Services for Children (EPSDT) – This is the child health component of Medicaid that states that children under age 21 who are enrolled in Medicaid are entitled to certain benefits and that States must cover a broad array of preventive and treatment services. Even if a service is not covered under the NC Medicaid State Plan, it can be covered for recipients under 21 years of age if the service is listed at 1905(a) of the Social Security Act and if all EPSDT criteria are met. https://www.ncdhhs.gov/providers/provider-info/mental-health/early-periodic-screening-diagnostic-and-treatment-medicaid-services-for-children
Short term insurance. Budget-friendly monthly payments but it is time limited. This type of insurance can be helpful while you search for a long-term option. However, this type of insurance usually does not cover preexisting conditions and it may not cover all Essential Health Benefits in your state.
Vision Benefits (may be included in some types of individual/family plans).
Dental (may be included in some types of individual/family plans).
Drug Benefits (may be included in some types of individual/family plans).
How can I keep track of my child’s medical records?
Finding the easiest and most reliable way to organize all the paper can be challenging. Using the electronic health record system is increasingly becoming one of the easiest ways to manage health records but only works when your child’s total health needs are all within one system. This is often not the case. Picking a system that will work for your personal organizational style can be difficult to find. Here are a few to help get you started:
“Keeping and Organizing Medical Records” Pacer Center
https://www.pacer.org/health/pdfs/HIAC-h17.pdf
Health Maintenance Appointment Tracker from the CDC
https://www.cdc.gov/hiv/pdf/effective-interventions/treat/steps-to-care/my-stc/cdc-hiv-stc-tracking-preparing-for-medical-appointments.pdf
“Technology to Improve Your Child’s Medical Home”, American Academy of Pediatrics, Healthy Children
https://www.healthychildren.org/English/family-life/health-management/Pages/Technology-to-Improve-Your-Childs-Medical-Home.aspx
Medication Use
Parents may question whether over-the-counter (OTC) and prescription drugs are safe to use with young children. There are clearly times that medications may be needed to address illness, infection and other concerning health or behavior issues. However, the decision to use medications should only be made after talking with your child’s health provider. Regardless of type of medication, it’s important to remember that children aren’t just small adults. Giving a child the wrong dose or a medicine that is not approved for children can have serious side effects.
If medications are used, there are tips for using them safely:
https://medlineplus.gov/medicinesandchildren.html
Will medications help my child who has a developmental disability, including autism?
Medications are not a cure for a developmental disability; however, sometimes medication can be helpful to address specific behaviors or symptoms. For example, stimulant medication is sometimes used to reduce significant hyperactivity and impulsivity and has been used safely in children
https://www.healthychildren.org/English/health-issues/conditions/adhd/Pages/Determining-ADHD-Medication-Treatments.aspx
For children with autism, the main treatments continue to be educational and behavioral in nature. If medication is considered, it should always be discussed with your child’s doctor and used to address a specific behavior or concern, not selected just because of a diagnosis of ASD. This toolkit may be helpful if you are considering medications
https://www.autismspeaks.org/tool-kit/atnair-p-medication-decision-aid