Early Intervention and Education For Children with Usher Syndrome

This page contains questions and answers related to the mental, social and emotional development of children with Usher syndrome in India, including the educational/school system in India, early intervention at home, etc. 

How are the educational needs of children with Usher syndrome different from those with other causes of deafblindness? 

Children with Usher syndrome are likely to have peripheral vision loss (or tunnel vision), night blindness, and glare problems at some point in their lives. On the other hand, other causes of deafblindness may affect other parts of the eye (e.g. central vision loss only). Some types of Usher (e.g type 3) may have balance issues, which may be misdiagnosed as clumsiness. Teachers may associate the term "deafblindness" with central vision loss only, and may not understand the meaning of "peripheral vision loss", and "night blindness". Since Usher syndrome is a rare condition, teachers will likely not be aware of what the condition is and what assistance the child requires.  So it is the parents' responsibility to explain to the teachers and school staff.  

Some of the factors that may affect an Usher child's hearing, vision, balance, and mental capacity include:
  • type of Usher syndrome
  • presence of learning disorders (e.g. dyslexia)
  • other health conditions (e.g. autism, cataract)
Knowing the type of Usher will help parents understand the likely progression of their child's hearing/vision loss, and help them plan ahead accordingly (e.g. when to start Braille training).

The vision loss part of Usher is due to retinitis pigmentosa, which results in the peripheral vision to narrow over time. So a child with Usher may have good central vision, but narrowing peripheral vision. As long as a child, with good central vision, will look directly at the teacher (or board), he/she can still follow the discussion. 

There are many factors that affect an Usher child's hearing, vision, and mental capacity, so the educational needs of a child with Usher (or any type of deafblindness) should be customized to the child's current condition, short and long-term goals, and be constantly re-evaluated over time as the child's condition changes. 

How does the school system in India accomodate the needs of children with Usher Syndrome?

In India, the educational support provided to children with Usher Syndrome can vary depending on the  parents' proactiveness in ensuring that the child's mental needs are met, the severity of the child's condition, the resources available in the specific school or region, etc. In general though, the Indian school system is still under-developed in terms of providing support to children with deafblindness.
  • Parental Push: In India, there is no formal Individualized Education Plans (IEPs, individualized education plans that outline a child's specific needs, accommodations, and modifications, agreed upon with the school). Instead, parents in India need to to be proactive. They need to inform the teachers about the child's condition (degree of hearing loss, degree of vision loss, peripheral vision loss), specific needs (e.g. sit in front of the class to clearly hear the teacher and see the board, additional time for exams that require a lot of reading especially when vision loss is high, repeat oral questioning twice during oral questioning, etc.). Every time the child goes from one grade level to the next, as teachers change, as the degree of hearing loss or vision loss change, parents need to proactively inform the teacher(s) via a face-to-face meeting and in writing.
  • Inclusive Education: The Indian government promotes inclusive education (as per the Rights of Persons with Disabilities Act, 2016), aiming to integrate children with disabilities into mainstream schools whenever possible. Inclusive education encourages children with Usher Syndrome to attend regular schools alongside their peers without disabilities. Many laws and policies have been created, but the implementation is lagging behind.
  • Special Schools: In cases where inclusive education is not feasible or appropriate, children with Usher Syndrome may attend special schools that cater specifically to students with both hearing loss and visual impairments. These schools provide specialized education, trained staff, and adapted learning materials. However, the number of special schools for the deafblind is still low in India, as compared to the estimated number of deafblind people.
  • Assistive Devices: Special schools may provide assistive devices to help students with Usher Syndrome overcome their sensory impairments. Or parents may avail of the government schemes that provide assistive devices to people with disabilities. Examples of assistive devices: hearing aids, cochlear implants, or other hearing devices can be used to enhance auditory perception, while braille books, screen readers, or magnification tools can aid in reading and accessing educational materials. 
  • Supportive Services: Special schools may have support services such as special educators, speech therapists, audiologists, mental health specialists, or orientation and mobility specialists who can work with children with Usher syndrome to develop their skills, enhance communication, and improve their overall learning experience. However, in India, the number of special schools which provide such supportive services is still limited.
  • Collaboration with Parents and Professionals: Parents can collaborate with special schools and professionals such as doctors, audiologists, and ophthalmologists to better understand the specific needs of children with Usher Syndrome. This collaboration helps in devising appropriate strategies, making necessary adaptations, and monitoring the child's progress.

What steps have the Indian Government taken for the education of deafblind children?

The Indian government has been doing the following:
  • created many laws and schemes for children with disabilities, as well as for organizations that support children with disabilities. See our page on Disability Laws, Rights and Benefits, and search for "education".  
  • regulating and standardizing the training of rehabilation and special education professionals. More educational institutions are now offering degrees in special education, specializing in the deafblindness.
  • digitizing a lot of information such as textbooks. Deafblind can access textbooks better in digitized form through screen readers, magnification tools, etc. 

Also, here, we compile and summarize a list of online news articles on this topic. The most recent articles are listed first.

Delhi govt trains special educators to assist disabled students. March 2023.

  • "50 selected schools will have ... induction loop system, closed captioning displays, sign language interpreters, gesture-to-voice technology, deaf-blind interpreters and communicators'

India Education Diary, November 2021

  • "Delhi: 3% seats of total available seats for fresh admissions in Kendriya Vidyalayas (KVs) and Jawahar Navodaya Vidyalayas (JNVs) are horizontally reserved for Differently Abled children."
  • "Barrier free access for differently abled students is integral part of Vidyalaya building design. Ramps and special toilets are constructed in schools as well as hostel buildings."
  • "Engaging the services of Special Educators to facilitate the teaching learning process among differently abled children"
  • "Need based procurement of assistive augmented devices."
  • "Exemptions from payment of VVN and Tuition Fees."
  • "The facility of compensation of time in examination, seating arrangement on the ground floor and providing facility of scribe/writer in all examinations for all students with benchmark disability studying in different classes are extended as per CBSE guidelines."

What are the Indian laws that pertain to the education of people with disabilities?

See our page on Disability Laws, Rights and Benefits, and search for "education".


Publications in India on Early Intervention

What are the Indian schemes that provide assistive devices to deafblind students?

See our page on Disability Laws, Rights and Benefits, and search for "assistive".


School Accommodations to Request for your Child 

In India, there is no formal "Individualized Education Plans" (IEPs, individualized education plans that outline a child's specific needs, accommodations, and modifications, agreed upon with the school). Therefore, parents in India need to to be proactive. 

The accomodations you may want to request the school, for your child, will depend on the child's current hearing/vision/balance conditions. Here are examples of accomodations you may want to request for your child. 
  • Allow the child to sit in front of the class so he/she can clearly hear the teacher, read what is written on the board, and lip-read the teacher.
  • [When vision loss is high] Give additional time for exams that require a lot of reading.
  • During oral questioning, repeat saying the question at least 2 times, to ensure the child understands the question.
  • Allow the child to use of assistive devices such as magnification tools.
  • [If the child is profoundly deaf, but can lip-read and does not use any hearing aids] Face the child when talking, and exaggerate in pronouncing the words and speak slowly.
  • In the classroom, allow the child to sit facing away from the glare of windows.
  • See Educational Consideratios for Students with Usher Syndrome - Part 2  for more examples
  • If the child is unable to keep up with what is written on the board due to vision loss, then request teachers for copies of the lecture notes. [Electronic files like PDFs can be magnified using software tools. Paper copies can be magnified using a magnifying glass.]
  • Request test papers to be  printed in bigger font size.
  • When projecting a document from a computer onto a big screen, use dark background and white letters. The same applies in an online class, when the teacher is sharing a document on screen.
  • If the teacher is using sign language to teach:
    • If the child's peripheral vision is narrow, request the teacher to sign within a smaller area.
It is best to directly approach all of your child's teachers and request for accomodations at the beginning of a school year. 

Every time the child goes from one grade level to the next, or as teachers change, or as the degree of hearing loss or vision loss change, parents need to proactively inform the teachers via a face-to-face meeting and in writing (for the teachers' reference).

As the child gets older, encourage the child to self-advocate (i.e. to directly request teachers for help, or remind the teachers to speak slowly, etc). 

How to train teachers for the deaf and blind

See also the section on "School Accommodations to Request for your Child" in this page.

  • "The Relationship of Hearing Loss to Listening and Learning Needs", a document which describes the functional impact of various levels of hearing loss on learning and social environments. This is one of the "the most used resource by teachers who work with students who are deaf. "  (according to a contributor from North Carolina). This might be helpful for parents with USH kids (how to advocate for your kid's needs in school), as well as educators for D/DB/DLv kids.

What are the special schools for the Deaf/Blind/DeafBlind in India? 

See our "Directory of Services for the Deafblind in India" page, and search for "school" or "education".

Are school textbooks available in electronic format?

Many NCERT, CBSE, NIOS, and SSC textbooks are available in electronic format in https://www.diksha.gov.in/. 

Are school textbooks available in ISL?

Many NCERT textbooks are available in ISL in https://www.diksha.gov.in/. Instructions on how to access this is provided here by islrtc.nic.in.

Which organizations train college students navigate college life?

See our "Directory of Services for the Deafblind in India" page, and search for "student".


Which resources can I use to self-study Indian Sign Language? 

There are many online resources for learning ISL and the number of resources continues to increase. Your choice of preferred resources would depend on your goals, choice of spoken language, and hearing and vision capacity.

Resources vary in terms of the following:
  • the spoken language used in the audio description (e.g. English, Hindi)
  • presence/absence of audio descriptions. Some videos have no spoken component.
  • presence/absence of captions 
  • the color of the signer's clothes and the background. Learners with low vision would prefer the signer to wear black clothes and dark plain video background, so they can easily see the signer's gestures.
ISL Courses:  See our "Directory of Services for the Deafblind in India" page, and search for "ISL training" or "ISL course".

YouTube Videos:

Learning Apps:
  • ??

Which resources can I use to self-study Braille? 


What questions should I ask a special school for the deaf/blind/deafblind?

If you are considering on enrolling your child in a special school for the deaf/blind/deafblind, here are example questions you might want to ask the school administration:


Assistive devices and technologies:
  • What assistive devices and technologies are available to support my child in the classroom?
  • Which assistive devices will be provided by the school? Which ones do I need to purchase?
  • Will the school provide the training on how to use these devices? Or do I need to get training elsewhere?

Accessibility:
  • What physical infrastructure are in place to ensure accessibility? For example, ramps, lifts with attendants, well-lit classrooms, etc.
  • What learning resources are available at school? For example, extensive library of braille books, books in large print, accessible digital content, etc.

Communication Support:
  • How will the school address the communication needs of my child?
  • Are there trained professionals, such as sign language interpreters or special educators, available to support my child's communication and language development?
  • What communication strategies and approaches will be used in the classroom?

Sensory Integration:
  • How will the school address the dual sensory impairments of my child?
  • Are there strategies or programs in place to facilitate sensory integration, adaptive learning environments, or sensory breaks when needed?

Teacher Training and Support:
  • What training and support will be provided to teachers and school staff to effectively work with children with hearing and vision impairments?
  • Are there opportunities for professional development to enhance their understanding of the condition and best practices in supporting students with hearing and vision impairments?

Social and Emotional Support:
  • How will the school address the social and emotional well-being of my child?
  • Are there support services, counseling, or peer interactions available to ensure their overall development and inclusion within the school community?

Transition Planning:
  • How will the educational system support my child's transition from one grade level to another or from school to post-secondary education or employment?
  • Are there transition plans or programs in place to facilitate a smooth transition and continuity of support?

List of publishers of Braille books in India 

to be added

Where can we get face-to-face Indian Sign Language Training Course? 

to be added

Where can we get online Indian Sign Language Training Course? 

to be added


Where can we get face-to-face Braille Training? 

to be added

Where can we get online Braille Training? 

to be added

What government incentives are in place to encourage people to be special education teachers?

to be added

What degrees in special education for the deaf/blind/deafblind are available in India?

In India, there are several degrees and diploma courses available in special education for the deaf, blind, or deafblind. You might be a parent looking for a special education tutor for your child and wondering about the qualifications to look for that is appropriate for your child's current hearing/vision condition. Or, you might be an individual who wants to get into the special education field for the deaf/blind/deafblind.  Here are some of the courses offered:

  • Master of Education (M.Ed) Special Education (Deafblindness) 
  • Master of Education (M.Ed) Special Education (Hearing Impairment) 
  • Master of Education (M.Ed) Special Education (Visual Impairment) 
  • Bachelor of Education (B.Ed) Special Education (Deafblindness) 
  • Bachelor of Education (B.Ed) Special Education (Hearing Impairment) 
  • Bachelor of Education (B.Ed) Special Education (Visual Impairment) 
  • Diploma in Education (D.Ed) Special Education (Deafblindness)
  • Diploma in Education (D.Ed) Special Education ( Hearing Impairment)
  • Diploma in Education (D.Ed) Special Education (Visual Impairment)
  • Diploma in Teaching Young Hearing Impaired Children
  • Trained Educators Course
There are now many institutions offering these degrees and approved by the Rehabilition Council of India. For an up-to-date list of institutions, it is best to do an internet search. 

Are there special education tutors for the hearing impaired, visually impaired, and deafblind?

to be added

What assistive technologies can help kids handle school/college work?

to be added

How can parents prepare themselves so they can better help their child get a good education, as the child's hearing and vision loss progresses?

This is a compilation of suggestions heard from parents with Usher kids, or read from various Usher forums. Which of these suggestions would apply to your family will depend on many factors, such as the child's degree of hearing and vision loss, the facilities available near you, etc.

  • Assistive technology enables the deafblind to achieve so many things. So parents can 
    • keep themselves up-to-date with various assistive technologies for education, mobility, etc. 
    • learn the assistive technology alongside your child
    • volunteer to be testers of new apps and products for the deafblind
  • There are life skills which may benefits Usher kids, especially when learnt at a young age. For example, problem solving, positive thinking, resilience. Parents can help their kids practice these skills if they themselves practice it. Be role models for your children. Actions are stronger than words.
  • Do not rely on special education tutors to handle your child's education needs. Learn it yourself. Be proactive. Observe the tutor. Read. Learn. Practice. For example, learn sign language with your child. Some parents even go back to school and take degrees in Special Education for Deafblindness.

How to manage vision-related symptoms of Usher syndrome?

  • "Sunglasses and Usher Syndrome", an article published by UsherKids Australia, explains how sunglasses (or specially-tinted prescription eyeglasses) can help manage the vision-related symptoms of Usher Syndrome, such as glare reduction, enhancing contrast and clarity in low-light conditions, etc.  

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