Children and Youth with Special Health Needs (CYSHN)

Next Steps: After Diagnosis

Hearing Level / Hearing Loss

Taking Action: The Health Care Team

On this Page...
Your Child and Family
Health Care Professionals and Providers
Health Care Goals
Record Keeping
YOUR CHILD AND FAMILY

Your child and your family are important members of the team. It is important that you:

  • Provide personal and family health and medical history
  • Report signs of hearing loss to the health care provider and the school
  • Coordinate care
  • Talk to the health care team about your or your child's concerns, expectations, health problems, changes in condition, the effectiveness of treatments, outcomes and goals
  • Talk about emotional health, self-esteem and behavior concerns
  • Help others to understand how to meet your child's individual needs
  • Document educational and health milestones

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HEALTH CARE PROFESSIONALS AND PROVIDERS

Children who are deaf or hard of hearing benefit from having people involved in their care who are experienced and knowledgeable about hearing loss.

Many health care providers use a family-centered health care team approach when working with a child who is deaf or hard of hearing. With this approach, health professionals, the family, and the child (when mature enough) decide together which treatments are best for the child. Once a decision is agreed upon, the family coordinates or arranges the child's health care. The family takes an active role in planning and making decisions about the health care of their child.

Experience and knowledge of issues facing deaf and hard of hearing children vary among health professionals. Finding health professionals who communicate well with a child who is deaf or hard of hearing can be challenging. As your child matures, it may become more important for health professionals to communicate or sign directly to your child. You may not always be available to interpret for your child. Children will also feel more independent communicating for themselves. An audiologist can help families find professionals who sign or use other communication methods. Interpreters are provided when needed (under the Americans with Disabilities Act).

Children who are deaf or hard of hearing require ongoing care and treatment from many different health providers and professionals. We encourage you to work with health providers, other professionals, and your insurance representative to coordinate your child's care.

Approximately 40% of children with hearing loss have a second disability. Other disabilities may be found at birth or may show up in the elementary school years.

It is important to make sure your child can see well. Have your child's vision evaluated by an ophthalmologist and screened regularly as recommended by your child's primary care provider (PCP) or the MDH guidelines. Some children have both a vision and hearing loss and may need Deaf/Blind services. These can be accessed through the Minnesota DeafBlind Technical Assistance Project

Working together, health care professionals and primary care providers:

  • Detect hearing loss
  • Diagnose conditions and their causes when possible
  • Provide early medical treatment
  • Provide genetic evaluation and counseling
  • Provide ophthalmologic (vision) exams and treatment when needed
  • Teach the families about hearing loss and how to manage it
  • Provide medications or surgery when needed
  • Use new technologies to aid communication and hearing
  • Provide early intervention services for the child and family
  • Refer the family and child to appropriate services
  • Educate families
  • Prevent further hearing loss through education
  • Foster healthy coping skills
  • Assist in emotional adjustments
  • Foster self-esteem
  • Encourage planning for the future (e.g. post-secondary education, career and employment)
  • Help children transition into the adult health care system

Pediatrician, Family Doctor or Practitioner
Your child's primary care provider (PCP) may be a pediatrician, family doctor, or nurse practitioner. Your child's PCP should:

  • Perform well-baby or well-child examinations
  • Conduct hearing and vision checks or screenings
  • Give immunizations (shots)
  • Monitor growth and development
  • Monitor nutritional status
  • Monitor hearing and vision status
  • Treat illnesses
  • Prescribe medications
  • Make referrals to other health providers and professionals
  • Communicate with you, your child, teachers, and other professionals

Audiologist
If you child has a hearing loss, your child may require a health professional who specializes in hearing conditions. You child's audiologist will:

  • Evaluate hearing and provide an audiogram
  • Teach your child and family about hearing loss and how to manage the condition
  • Provide hearing aid assessments and recommendations
  • Fit hearing aids and assistive listening devices (ALDs)
  • Counsel the family about hearing aids and assistive listening devices
  • Counsel the family about your child's progress
  • Communicate with other members of the health care team
  • Refer the family to organizations for support and connections to other families
  • Provide hearing and amplification services in a medical clinic or school
  • Work with classroom teachers, the teachers for the deaf and hard of hearing, and the speech/language pathologist to help develop communication goals

Public Health Nurse
A public health nurse is a registered nurse who specializes in the care of people in their home and in the community. Your child may or may not need public health services. Public health nurses:

  • Teach the family about hearing loss and how to manage the condition
  • Develop a plan of care
  • Provide preventive and educational counseling
  • Provide health services in the home and sometimes in school
  • Monitor growth and development
  • Help the family coordinate health care
  • Make referrals to organizations in the community and to other health providers and professionals
  • Assist the family in developing home modification plans
  • Develop a plan to promote independence in activities of daily living (ADLs)
  • Communicate with other professionals about needs

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Otolaryngologist
Often children who are deaf or hard of hearing see a doctor who treats ear, nose and throat problems, sometimes called an otolaryngologist, otologist, or ENT doctor. This specialist:

  • Examines the ears, nose and throat
  • Diagnoses the type and cause of the hearing loss when possible (cause can only be determined 50% of the time)
  • Discusses hearing tests with the audiologist
  • Recommends treatment
  • Consults with the family and other professionals about the treatment plan
  • Inserts tubes (if necessary) in the ears to prevent or treat a hearing loss resulting from frequent ear infections

Teacher of the Deaf and Hard of Hearing
If your child receives early intervention services from the school district or as your child enters school, your child may work with a teacher of the deaf and hard of hearing. These teachers provide educational support services for children with hearing loss in the schools. A teacher of the deaf and hard of hearing:

  • Communicates in your child's language
  • Provides assessments to determine appropriate communication and education strategies
  • May offer direct education services
  • Communicates test results with other members of the health care team
  • Communicates information about education needs to teachers and other school personnel
  • Assists in providing an appropriate learning environment
  • Teaches the family and child about hearing loss communication or education strategies
  • Monitors educational growth and development

Speech-Language Pathologist
Children who have a hearing loss may need help with language and speech. A speech-language pathologist (SLP) is a health care professional who specializes in speech and language development. The SLP:

  • Communicates in your child's language
  • Evaluates speech and language development
  • Checks voice quality
  • Provides appropriate speech and language therapy
  • Educates you and your child's teachers about appropriate speech and language development and strategies to foster communication; this is often done with a teacher of the deaf/hard of hearing

Ophthalmologist
Children with hearing loss often rely on other sensory systems, such as vision. There are also certain conditions and syndromes associated with both hearing and vision loss. Due to these reasons, it is important to have your child's vision regularly screened and fully evaluated if needed. Detecting vision loss early will help you make educational and medical decisions that are best for your child.

An ophthalmologist is a doctor who treats eye conditions and also:

  • Evaluates visual problems and checks for nearsightedness and farsightedness
  • Prescribes medical treatment for eye problems
  • Recommends glasses or other treatments

Geneticist
Because hearing loss can be a congenital and heritable condition, genetic information may be important to you or your child. A geneticist is a doctor or health professional who specializes in genetic and hereditary conditions. A geneticist:

  • Reviews the family health history for hearing loss and other related conditions
  • Reviews results of genetic tests
  • Evaluates child for other possible health concerns
  • Informs the child and family of the findings from tests and evaluations
  • Provides information about chances for other family members to be affected

Social Worker
Families and children with special health needs may need extra help. A social worker is a professional who helps arrange, refer or provide direct support services. A social worker:

  • Helps the family balance their needs and manage a hearing loss
  • Counsels the family on ways to cope with stress, grief and family issues
  • Finds community resources such as support groups, educational programs and financial assistance as needed
  • Provides referrals to community resources

Child Psychologist
Sometimes children with special health needs such as hearing loss need the help of a psychologist. A child psychologist specializes in children's mental health issues. A child psychologist may:

  • Provide assessments of emotional and social development
  • Help the child and family handle stress related to a chronic condition
  • Provide testing to determine if the hearing loss has affected the child's learning (Note: for children who are deaf or hard of hearing, the psychologist should communicate in the child's communication method)
  • Counsel your child and family on emotional and social development
  • Recommend appropriate education, counseling and therapy
  • Communicate test results to other members of the health care team
  • Help maintain your child's self-esteem

School Nurse
After your child enters school, a school nurse may become part of your child's health care team. A school nurse is a registered nurse (RN) or licensed nurse (LPN) who provides health-related services in school. A school nurse also:

  • Develops an Individual Health Plan (IHP)
  • Coordinates health care needs in school and for school- related activities
  • Communicates information about health needs to teachers and other school personnel
  • Helps teachers provide an appropriate learning environment
  • Performs special health care procedures and administers medications
  • Communicates with the family, doctor and other health professionals about health concerns at school

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HEALTH CARE GOALS

Because hearing loss is the most frequently occurring congenital condition and is an invisible condition, hospital screening programs are important. In addition, screening older children and monitoring their hearing is important if the children are at risk or if a hearing loss is suspected.

Whether a child is born deaf or hard of hearing or has developed late-onset hearing loss, early diagnosis and timely medical, audiological, and educational interventions are critical to a child's cognitive, speech, language, and social development.

Treatment
  • Early diagnosis
  • Early treatment and intervention
  • Family understanding of hearing loss and the ability to manage the condition
  • Emotional adaptation of the child and family to a hearing loss
  • Optimal hearing, either corrected or improved with hearing aids
  • Surgery or other treatments to preserve residual hearing
  • Effective communication using the family's chosen communication mode (speech, writing, cued speech, sign language or other methods)
  • Maximum ability to perform age-appropriate activities of daily living (ADL)
  • Planning for post-secondary education, career, employment, and transition into the adult health care system
Health Care

Regular health care visits are important to your child's well being. These visits are necessary to check your child's growth and development and monitor hearing-related problems. The number of regular visits depends on your child's age and needs. Routine and periodic health care includes:

  • Well-baby check-ups
  • Physical examinations
  • Immunizations
  • Height and weight measurements
  • Audiological and hearing aid evaluations (conducted as often as every 1-3 months for infants and preschoolers or as seldom as every two years for teenagers)
  • Ear checks for middle ear infections and temporary or permanent changes in hearing
  • Vision checks to monitor and preserve sight. A child who is deaf or hard of hearing may rely on vision to fill in missing information
  • Nutritional assessments
  • Discussion of issues or concerns, including development, ophthalmology, dental and other specialty care, ability to perform age-appropriate activities, emotional adaptation, self-esteem, academic performance, and transition to adulthood

It is necessary to prioritize and then arrange your child's medical appointments. Prioritizing may take on greater importance as your child gets older and becomes involved in more activities.

Health Concerns/Monitoring

For children who are deaf or hard of hearing, certain health symptoms are of concern. Symptoms that need prompt medical attention include;

  • High or unusual fever
  • Signs of ear infection including pain, redness, drainage, bleeding, fever, pulling at the ear or irritability in infants. Ear infections should be treated promptly to prevent additional temporary or permanent hearing loss.
  • Persistent dizziness, nausea or tinnitus (ringing in the ears)
  • Signs of a sudden change in hearing
  • Red eyes, eye pain or failing vision
  • Signs of depression, sadness, withdrawal, anxiety or worry
  • Change in school performance or school attendance

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RECORD KEEPING

Record keeping is an important part of coordinating your child's health care. Although your child's health care providers will keep records about your child, it will be helpful to keep your own records also. If you decide to keep your own records, consider making files for:

  • Names, titles, addresses and phone numbers of health care team members
  • Immunization records
  • Growth charts and development records
  • Speech and communication development records
  • Medication plans and side-effects, if any
  • Surgeries or other treatments, including dates, procedures performed, and results
  • Audiogram records
  • Medical reports
  • Daily care plans for speech therapy and home activities
  • Appointment dates
  • Hearing aid instructions, user manual, warranty and repair records
  • Copies of financial information such as bills and bill payments, insurance policies and applications for financial assistance (SSI, Medical Assistance etc.)
  • Resource information (financial support, community resource brochures, etc.)
  • Educational materials about hearing loss
  • Reports from educational testing
  • School records including assessments, report cards, performance and copies of your child's Individual Family Service Plan (IFSP), Individual Education Plan (IEP) or Individual Health Plan (IHP)

In addition, your child's care may involve numerous health care providers and complicated instructions. It is easy to forget what you wanted to ask during a busy clinic visit. Prepare for your child's visit by writing down your questions and concerns. Some parents find it useful to tape-record the provider's instructions. The family can replay the tape to review instructions. The tape can also be shared with professionals working with the child in the community.

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Information on this web site was obtained from the Infant Hearing Guide developed in a cooperative project between the University of Arkansas for Medical Science, Arkansas Children's Hospital and the University of Arkansas RRTC and we would like to acknowledge their work.

THIS INFORMATION DOES NOT PROVIDE MEDICAL ADVICE. All content, including text, graphics, images and information are for general informational purposes only. You are encouraged to talk with your doctor or other health care professional with regard to information contained on this web site. After reading this information, you are encouraged to review the information carefully with your doctor or other healthcare provider. The Content is not intended to be a substitute for professional medical advice, diagnosis or treatment. NEVER DISREGARD PROFESSIONAL MEDICAL ADVICE, OR DELAY IN SEEKING IT, BECAUSE OF SOMETHING YOU HAVE READ ON THIS web site.
Updated Wednesday, 25-Jul-2012 16:51:18 CDT