Hearing Level / Hearing Loss

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Next Steps: After Diagnosis

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Children and Youth with Special Health Needs (CYSHN)

Next Steps: After Diagnosis

Hearing Level / Hearing Loss

Taking Action: As My Child Gets Older

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Development
Child Care
Education
Employment

DEVELOPMENT

You can find joy watching your child grow and develop at every age. Children develop faster as infants and toddlers than during other times in life. Each stage of development is important and is marked by physical and mental growth. Examples of developmental growth include crawling, walking, saying a first word, using several words, connecting words, and more.

Your child learns from experiences and play. To facilitate this, you can:

Provide skill and age-appropriate toys and activities that will stimulate your child's development at different ages.
Provide your child with opportunities to:

Play in a safe environment with few restrictions
Play with other children with and without hearing loss
Start and complete activities during play
Play outdoors
Experience structured activities
Choose and create their own, unstructured play
Try things, succeed or fail, and learn from them

Your child will learn from others and relationships. You can:

Introduce your child to adults who are deaf or hard of hearing who may serve as mentors and role models.
Encourage peer activities. Some children and teens benefit from belonging to a support group. These groups offer recreation and a chance to make friends with others who have similar interests.
Encourage your child to be involved in age-appropriate activities including sports, clubs, community activities, or work.

Prepare your child for growth and help him or her become an adult. You can:

Encourage independence by allowing your child to make choices and develop responsible behavior.
Encourage your child to be an advocate for him or herself.
Set a good example and model good behavior.
Encourage your child to communicate his or her needs. Resist the temptation to anticipate your child's needs.
Set appropriate boundaries for your child. Help your child to make good choices and demonstrate good behavior. All children need both love and limits.
Support your child with help and understanding. Children who are not feeling well may regress in their behavior at times. They may want parents to do things they previously did themselves. Usually this is temporary and will end when your child feels better.
Praise your child often to develop positive self-esteem. All children manage life better if they feel good about themselves.
Encourage your child to take responsibility and care for activities of daily living (ADLs) and hearing aid technologies (HATs). Provide supervision when necessary.
Involve your child in making decisions about and planning for any special services as much as possible when appropriate. Children have preferences. Some may prefer to have classroom services and others may want after school services.
Foster independence and encourage peer relationships. For example, camps are available which provide opportunities for children to make friends with other children with a hearing loss or other chronic conditions. In addition, they offer the usual variety of camping activities. Contact camps for information about possible financial aid.

Help your child to communicate with others. You can:

Talk to your child often. Say words and phrases clearly. It is easier for the child to hear if the room is free of noise.
Encourage family communication. Some children with hearing loss may benefit from cued speech, sign language, and other communication systems. It is important to communicate clearly and often to offer opportunities for language expansion. Parents and siblings may need ongoing instruction in cued speech or sign language in order to better communicate with the child who is deaf or hard of hearing.
Encourage reading. Set a good example by reading as often as you can to your child and look at your child so he or she can watch your expressions. Use books with and without words to tell stories. Use books that have signs for children who use sign language.

Help your child understand their hearing loss. You can:

Provide your child with simple, age-appropriate information about their hearing loss and encourage your child to read about hearing loss.
Explore using an assistive listening device (ALD) such as TTY /TDD for telephones, closed captioned television (CC), decoders, a relay service, alarms and others.
Seek genetic counseling. Some families have a genetic tendency to develop hearing loss. Counseling may provide information about the cause of your child's hearing loss.
Advocate for assistive devices when necessary. It may be necessary for your child's school to provide an interpreter or an FM system to make school-related activities fully accessible.

Protect your child from harm. You can:

Talk to your child about bullying. Children with special needs may be vulnerable targets for others who behave aggressively. Encourage your child to be assertive and to report to school authorities if they are a victim. If you suspect that your child is being bullied, report it to your child's school immediately.
Provide information on good touch-bad touch and sexual exploitation. Many children suffer sexual abuse. A child with a hearing loss or other developmental disabilities may be more at risk than other children.
Provide information on alcohol and drugs. Tell your child about the dangers of peer pressure, experimenting, and abuse. Help your child to make good choices.
Monitor your child's school attendance. If absenteeism is becoming a problem, discuss it with your child's doctor. Sometimes the doctor may ask that a psychologist work with you and your teen to improve school attendance.
Work with your child to determine priorities, then arrange medical appointments. Although many appointments can be scheduled after school or during school breaks, at some point it is inevitable that a medical appointment will conflict with family or school schedules.

Special Concerns for Specific Ages

Ages 0 to 3 years

In addition to regular health care such as well-baby checkups and immunizations, special concerns for infants and toddlers include vision screening; cognitive, motor and language development; nutrition; dental care; and identifying needs related to hearing loss. Other concerns may include:

Parent support. Parents need time to adjust to having a child with special health needs. Some parents seek out more information or education. Other parents want to talk to other parents, join parent support groups or want family counseling. See the resources section for more information.
Determining the cause or reason for hearing loss. When your child's hearing loss is first identified, doctors will try to determine the cause of the hearing loss and determine if there are other related medical problems. Medical specialists most children with hearing loss should see include a geneticist, otolaryngologist, and ophthalmologist.
Follow up visits. Hearing tests should be conducted every 3 months for the first year after diagnosis of a hearing loss, every 6 months for the next two years, and annually thereafter. Infants often need new earmolds monthly. Performance of the hearing aids and necessary adjustments should also be checked at follow up visits.
Assistive devices. Small children sometimes have difficulty wearing hearing aids. Ask your audiologist for suggestions if you are concerned. Your child may need to try several options to achieve consistent hearing aid use. Demonstrate appropriate hearing aid care to your child. Keep hearing aids in a safe place when they are not worn (e.g. at night) and check them daily.
Exploring a cochlear implant for children who are profoundly deaf or children who have not received benefit from a hearing aid.

Ages 3 to 6 Years

Special concerns for this age group include pre-school screening, promoting optimal growth and development, promoting independence in activities of daily living (ADLs), and determining special needs related to hearing loss. Other recommendations include:

Testing hearing every six to twelve months. Check hearing aids and earmolds at these intervals also. Earmolds may need to be replaced as often as every six months.
Annual review of developmental skills and needs in accordance with the IEP, IFSP or 504 Plan.
Exploring a cochlear implant for children who are profoundly deaf or children who have not received benefit from a hearing aid.
For children older than age three, school districts are required to conduct evaluations that include all developmental areas of concern. Parents of children over age three with identified or suspected hearing loss are encouraged to contact their local school district to learn more about Early Childhood Special Education.

Ages 6 to 13 Years

Special concerns for this age group include promoting optimal growth and development, promoting independence with activities of daily living (ADLs), and determining special needs related to hearing loss. Other recommendations include:

Annual hearing tests if your child uses hearing aids. If your child does not use hearing aids, an audiologist will determine how often your child's hearing should be tested.
Periodic assessments of speech, language, and communication skills may be necessary and therapy may be recommended.
Exploration of technology to assist your child. Children who are profoundly deaf or who have not received benefit from hearing aids may be a candidate for a cochlear implant.
Encourage your child to take responsibility for communicating his or her needs. Mastering communication skills promotes self-confidence and a feeling of accomplishment.
Explore using an ALD such as TTY/TDD for telephones, closed captioned television (CC), decoders, a relay service, alarms and others.
Provide information on good touch-bad touch and sexual exploitation. Many children suffer sexual abuse. A child with a hearing loss may be more at risk.

Ages 13 to 18 years

Concerns for this age group include promoting independent activities of daily living (ADL) and transitioning to adulthood. Parents may want to:

Encourage your teenager to be an advocate for him or herself. Teens can usually keep school staff informed of changes in their condition and needs. However, at certain times during adolescence, teens may not do this. Parents need to be aware of how much information their teen has shared with school staff.
Advocate for assistive devices if necessary. Your child's school may need to provide an interpreter or an FM system to make school-related activities fully accessible.
Monitor school attendance. If absenteeism is becoming a problem, discuss it with your child's doctor. The doctor may ask that a psychologist work with you and your teen to improve school attendance.
Encourage your teenager to be involved in age-appropriate activities including sports, clubs, community activities or work.

Ages 18 to 21 years

Special concerns for this stage include:

Finding health insurance coverage for hearing aids. The Minnesota Department Employment and Economic Development (DEED), Division of Rehabilitation Services may assist with the cost of hearing aids if they determine that a person needs them for employment. See the Resources section of this booklet for more information.
Changing doctors. Young adults often change doctors during the late teens from a pediatrician to an internist or a specialist. Ask your child's pediatrician for recommendations.
Coordinating care. College students may need to make special plans for medical follow-up during vacations.
Getting referrals. Young adults who plan to move away from home may need to find new health care providers. Your doctor may be able to refer you to specialists and providers in the new area. Information about audiologists is also available from the American Speech Language and Hearing Association (ASHA). See the Resources section of this booklet for more information.

Transition to Adulthood

As a parent it is your responsibility to help your child prepare for the future. Throughout your child's life you will have opportunities to allow your child to gain confidence, independence and take on responsibility.

Young adults begin to set life goals and explore careers. Hearing loss may influence goals and choices. Prepare yourself and your child to change primary care providers. If your child's primary care provider is a pediatrician, changing doctors in their late teens is helpful to ease transitions. The pediatrician can recommend an adult medical provider (an internist) or other specialist.

You and your child must coordinate care and get referrals. College students should make special plans for medical follow-up during vacations. Young adults who plan to move away from home may need to find new health care providers. Your doctor may be able to refer you to specialists and providers in the new area. Information about audiologists is also available from the American Speech-Language and Hearing Association (ASHA) and the American Academy of Audiology (AAA).

Prepare your child for adult relationships. Young adults need to understand how hearing loss may affect their sexual and reproductive lives. Sexually active young adults also need information to protect themselves from pregnancy and sexually transmitted diseases. If you or your child has specific concerns about sexuality or contraception and pregnancy, discuss them with your child and child's primary care provider.

You may need to:

Consider genetic counseling. Some families may have a genetic tendency to develop hearing loss. Genetic counseling may provide information about the cause of your child's hearing loss and may influence reproductive choices.
Involve your child's high school guidance counselor in helping your child make choices about employment and post-secondary education.
Prepare your child for post-secondary education. Many college and technical college programs offer special services for students who are deaf or hard of hearing. Find out if college services meet the needs of a student with a hearing loss before applying for enrollment.
Prepare your child for the workforce. Teens receiving special education services are eligible to receive vocational counseling at age 14. The Minnesota Department of Employment and Economic Development (DEED), Division of Rehabilitation Services helps students explore post-high school services and provides financial assistance for post high school training.

CHILDCARE

There will be times when you need regularly scheduled or on-call child care. Choosing a child care provider to care for your child who is deaf or hard of hearing is an important decision.
You may want to:

Choose a child care provider who is aware of your child's special needs and who can or is willing to learn how to communicate with your child. Some counties offer continuing education credit to child-care providers for sign language or other communication classes.
Choose a child care provider who you trust.
Choose a child care provider who understands and implements your instructions.
Teach the provider ways to communicate effectively with your child.
Show the provider how to manage and care for listening devices such as proper hearing aid care and use.
Incorporate early intervention or special education services in child care settings.
Seek resources and training for family caregivers. Family caregivers can often participate in early intervention classes.

The Americans with Disabilities Act
The Americans with Disabilities Act (ADA) of 1990 requires that child care providers not discriminate against persons with disabilities on the basis of disability. That is, they must provide children and parents with disabilities with an equal opportunity to participate in the child care center's programs and services. Specifically:

Centers cannot exclude children with disabilities from their programs unless their presence would pose a direct threat to the health or safety of others or require a fundamental alteration of the program.
Centers must make reasonable modifications to their policies and practices to integrate children, parents, and guardians with disabilities into their programs unless doing so would constitute a fundamental alteration.
Centers must provide appropriate auxiliary aids and services needed for effective communication with children or adults with disabilities, unless doing so constitute an undue burden.
Centers must generally make their facilities accessible to persons with disabilities. Existing facilities are subject to the readily achievable standard for barrier removal, while newly constructed facilities and altered portions of existing facilities must be fully accessible.

EDUCATION

Education is an important part of your child's journey. Having a child with hearing loss or other special needs adds more choices, considerations, and possibly more challenges to navigating the educational system. Several laws may apply to your child's situation.

The Individuals with Disabilities Education Improvement Act
The Individuals with Disabilities Education Improvement Act (IDEA), amended in 1997, and the Individuals with Disabilities Education Improvement Act of 2004, guarantee special education and related services to eligible children with disabilities. IDEA provides federal funds to assist state and local education agencies in meeting its requirements to serve infants, toddlers, children, and youth with disabilities. Each state educational agency is responsible for administering IDEA within the state and distributing the funds for special education programs.

Under IDEA, infants and toddlers may be eligible for early intervention services, delivered in accordance with an individualized family service plan (IFSP). Children and youth ages 3-21 may be eligible for special education and related services if they are determined as eligible through an individualized evaluation and by a multidisciplinary team (including the parent and child) in one or more of 13 categories; categories include deafness, hearing impairment, and deaf-blindness. In some cases, children who have developmental delays but do not fit the 13 categories may be eligible.

Under IDEA, schools are required to provide free and appropriate public education (FAPE). FAPE is defined to mean special education and related services that:

Are provided at no charge to parents
Meet other state educational standards
Are consistent with a child's individualized educational program (IEP)

Special education means "specially designed instruction, at no cost to the parents, to meet the unique needs of the child with a disability." Related services are services required to assist a child to benefit from special education, including speech-language pathology, physical and occupational therapy, and others.

With parental consent, a team conducts an individualized evaluation using a variety of technically sound, unbiased assessment tools. Based on the results, a team of professionals (including the parent of the child) determines eligibility for special education, develops an IEP for the child, and reviews the IEP every year. Reevaluations are conducted at least every 3 years.

Results from your child's evaluation are used to develop an IEP that specifies the special education, related services, and supplemental aids and services necessary to address your child's goals. Your child will be placed in the least restrictive environment based on the IFP. At least once a year, you will meet with the team of professionals to review your child’s IEP and determine if goals are being met.

Section 504 of the Rehabilitation Act
If your child does not have special educational needs, but has special needs for equipment, adaptations, accommodations, or other interventions, your child may qualify for help under Section 504 of the Rehabilitation Act of 1973.

Section 504 is a federal civil rights law to prohibit discrimination on the basis of disability in programs and activities - public and private - that receive federal financial assistance. It protects the rights of individuals with disabilities in programs and activities that receive funds from the U.S. Department of Education. Section 504 is an antidiscrimination law and does not provide any type of funding to schools or families. IDEA funds may not be used to serve children found eligible only under Section 504.

Section 504 is enforced by the Office of Civil Rights. It requires a school district to provide a "free appropriate public education" (FAPE) to each qualified student with a disability who is in the school district's jurisdiction, regardless of the nature or severity of the disability. FAPE consists of the provision of regular or special education and related aids and services designed to meet the student's individual needs.

At the elementary and secondary educational level, a "qualified student with a disability" is a student with a disability who is:

An age at which students without disabilities are provided elementary and secondary educational services
An age at which it is mandatory under state law to provide elementary and secondary educational services to students with disabilities
Or, a student to whom a state is required to provide a free appropriate public education under the Individuals with Disabilities Education Act (IDEA).

At the postsecondary educational level, a “qualified student with a disability” is a student with a disability who meets the academic and technical standards required for admission or participation in the institution's educational program or activity.

Under Section 504, your child must be evaluated by a team that:

Is familiar with your child
Understands the evaluation information and placement options
Uses multiple assessment tools tailored to assess specific areas of educational need.

If your child has a 504 Plan, they will only be placed in a separate class or facility if they cannot be educated satisfactorily in the regular education setting with the use of supplementary aids and services. Your child also must be evaluated before significant changes are made regarding placement.

The Americans with Disabilities Act
The Americans with Disabilities Act (ADA) of 1990 is a civil rights law that prohibits discrimination solely on the basis of disability in employment, public services, and accommodations. It applies to education. The ADA covers individuals with a disability who are qualified for the program, service, or job and one or more of the following:

Have a physical or mental impairment that substantially limits one or more life activities
Have a record of such an impairment
Are regarded as having the impairment

The ADA is not responsible to provide a free, appropriate public education. However, the ADA provides additional protection in combination with actions brought under Section 504 and IDEA. ADA protections apply to nonsectarian private schools, but not to organizations or entities controlled by religious organizations. Reasonable accommodations are required for eligible students with a disability to perform essential functions of the job. This applies to any part of the special education program that is community-based and involves job training/ placement. Although not required, an IEP under IDEA fulfills requirements of Title II of the ADA for an appropriate education for a student with disabilities.

The ADA does not specify evaluation and placement procedures; it does specify provision of reasonable accommodations for eligible students across educational activities and settings. Reasonable accommodations may include, but are not limited to, redesigning equipment, assigning aides, providing written communication in alternative formats, modifying tests, reassigning services to accessible locations, altering existing facilities, and building new facilities.

Under IDEA, schools are required to provide free and appropriate public education (FAPE). FAPE is defined to mean special education and related services that:

Are provided at no charge to parents
Meet other state educational standards
Are consistent with a child's individualized educational program (IEP)

Post-secondary Education

Post-secondary students may need academic adjustments. Schools may adapt courses, use assistive technology and support staff or modify academic requirements. Some colleges offer special support services for students who are deaf or hard of hearing.

Colleges and post-secondary programs often offer special services to students who have a hearing loss. The Postsecondary Education Programs Network offers web-based information and outlines options available to deaf and hard of hearing students.

Before your child enrolls, find out what school services are available to meet your child's needs. Colleges and technical schools must provide services under the ADA. Services may include interpreters, note takers, ALDs, HATs, tutors, FM systems, auditory trainers, and captioned instructional materials. Young adults who go away to school should also plan for regular medical follow-up. They can arrange regular health care when they are home on vacation. However, they should also make plans on how to obtain medical care for illnesses or emergencies. Colleges and universities offer health services to students. When your child applies to schools, ask about available health services to meet special needs.

EMPLOYMENT

Although employment may not be a concern to parents until their children are in their mid-teens, parents should help their children make good choices and prepare them for the workforce. The Americans with Disabilities Act (ADA) prohibits discrimination in employment practices against a qualified person with a disability. A qualified person with a disability is a person who meets skills, experience, education or other requirements for an employment position and can perform the "essential functions" of the position with or without reasonable accommodation.

In addition, teens who receive special education services are eligible to receive vocational counseling at age 14. These services help teens plan for post-secondary education and prepare for a career. Young adults may be eligible to receive vocational rehabilitation services if hearing loss makes it difficult to obtain further education and training. The Minnesota Department of Employment and Economic Development, Division of Rehabilitation Services can help a young adult find and keep a job.

All students can meet with school counselors for education and career guidance. The school counselor can make a referral to the Minnesota Department of Employment and Economic Development (DEED), Division of Rehabilitation Services when your child is age 16 or in the junior year of high school. DEED helps students explore post high school services and financial assistance for post high school training.

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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.

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