Self-Training Guide to Independent Living with Usher Syndrome

Many people with Usher syndrome live in places where professional rehabilitation services are unavailable. This webpage contains a compilation of practical, low-cost, family-oriented training advice aimed at filling this important gap.

Got a tip to share? Please send an email to info.india@usher-syndrome.org.

Guidelines ... Families should:

• Explain changes before moving objects.

• Allow extra time instead of immediately helping.

• Encourage problem-solving.

• Teach one new skill at a time.

• Focus on independence rather than speed.

Research and rehabilitation guidance consistently emphasize that independence develops through structured practice and environmental consistency. (Usher Syndrome Coalition).

OUTLINE

This page is organized using this outline. The actual compilation of tips is given after this outline.

A. Home Management

B. Kitchen and Cooking Skills

C. Personal Care

D. Money and Financial Skills

E. Communication Skills

F. Orientation and Mobility (O&M)

G. Technology and Assistive Devices

H.  Personal Safety and Emergencies

I. Education and Employment

K. Training Activities for Families

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DETAILS

A. Home Management

Covers topics like:

• Organizing living spaces

• Labeling systems

• Household safety

• Cleaning and laundry

• Emergency preparedness

A.1 Keep furniture in fixed locations

A person with combined vision and hearing loss develops a mental map of the home. Frequently moving furniture increases collision and fall risks. Keep layouts consistent and announce changes immediately. (Deafblind Information Australia)

Training Exercise

• Have the person walk independently between key locations (bedroom → bathroom → kitchen).

• Introduce only one change at a time and practice locating it.

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A.2   Use tactile labels

Place:

• Braille labels (if Braille is known)

• Raised dots (Search the internet for "bump dots for visually impaired")

• Puffy paint  (Search the internet for "puffy paint" or "3D paint". Commercial puffy paints can last for years on hard, non-porous surfaces)

• Rubber bands

• Different textured stickers (Search the internet for "textured stickers", or "foam stickers", or "3D stickers")

on:

• Light switches

• Appliances

• Medication containers

• Storage boxes

Braille can initially be introduced simply for labeling before full Braille literacy is developed. 

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B. Kitchen and Cooking Skills

Covers topics like:

• Identifying ingredients

• Safe knife handling

• Measuring ingredients

• Using stoves and ovens safely

• Food storage

• Meal preparation

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B.1     Create a tactile spice-labeling system

Example:

Spice	Label
Salt	1 raised dot
Sugar	2 raised dots
Pepper	3 raised dots
Chili powder	rubber band around lid
Turmeric	textured tape

Or use containers with different shapes for different spices.

Never rely solely on color.

Training Exercise

• Practice identifying 10 containers blindfolded.

• Repeat until 100% accuracy is achieved.

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B.2 Store items consistently in the kitchen

Always keep:

• Plates in one cabinet

• Cups in another

• Frequently used ingredients in designated positions

Consistency reduces dependence on vision. 

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B.3 Use contrast where vision remains

For individuals with usable vision:

• White cutting board for dark foods

• Black cutting board for light foods

• Dark measuring cups for white ingredients

Contrast often improves usability for people with retinitis pigmentosa and Usher syndrome. (University of Nevada, Reno)

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C. Personal Care

Covers topics like:

• Grooming

• Clothing selection

• Medication management

• Health monitoring

TO BE ADDED

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D. Money and Financial Skills

Covers topics like:

• Identifying coins and bills

• Budgeting

• Banking

• Mobile payments

• Avoiding scams

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D.1 Organize bills by folding pattern

Example:

Bill	Fold
Small denomination	No fold
Medium denomination	Fold lengthwise
Larger denomination	Fold widthwise
Highest denomination	Fold twice

The exact system does not matter; consistency does.

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D.2 Use separate wallet compartments

Assign:

• Coins

• Small bills

• Large bills

• Cards

to fixed locations.

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D.3 Learn coin identification by touch

Train with:

• Diameter

• Thickness

• Edge texture

• Weight

Practice sorting mixed coins daily.

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E. Communication Skills

Covers topics like:

• Speechreading and residual hearing

• Sign language

• Tactile communication

• Technology-assisted communication

TO BE ADDED

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F. Orientation and Mobility (O&M)

• Indoor navigation

• Outdoor navigation

• Street crossing

• Public transportation

• Human guide techniques

• White cane skills

F.1. Build mental maps

Start with:

1. Bedroom

2. Entire house

3. Yard/building

4. Neighborhood

O&M training begins with understanding where you are and where you want to go. (Usher Syndrome Coalition)

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F.2 Use landmarks and cues

Teach recognition of:

• Different floor surfaces

• Smells

• Airflow

• Echoes

• Vibrations

• Traffic sounds (when hearing allows)

People who are deafblind often navigate using tactile, residual auditory, and environmental cues. (Deafblind Information Australia)

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F.3  Practice route learning

Example:

Home → grocery store

Break route into segments:

1. Front door to gate

2. Gate to corner

3. Corner to crossing

4. Crossing to store

Master each segment before combining them. (Deafblind Information Australia)

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F.4  Learn human-guide techniques

Instead of being pulled, the person lightly holds the guide's arm above the elbow and walks half a step behind. This is a standard, safe guiding method. (Deafblind Information Australia)

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G. Technology and Assistive Devices

• Smartphones

• Screen readers

• Magnification

• AI visual assistance

• Vibrating alerts

G.1 Use vibrating alarms

Many deafblind individuals benefit from:

• Smartphone vibration alarms

• Smart watches

• Bed shakers

Vibration can be more effective than sound-based alarms. (Usher Syndrome Coalition)

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G.2  Use AI visual assistance

Apps can help identify:

• Currency

• Products

• Labels

• Appliance controls

Several services are designed specifically for blind, low-vision, and deafblind users. (Usher Syndrome Coalition)

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H.  Personal Safety and Emergencies

H.1 Create an emergency contact card

Include:

• Name

• Preferred communication method

• Emergency contacts

• Medical information

Keep copies:

• Wallet

• Phone case

• Backpack

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H.2  Practice emergency drills

Train for:

• Fire evacuation

• Earthquakes

• Power outages

• Getting lost in public

Practice repeatedly until routes become automatic.

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I. Education and Employment

Covers topics like:

• School accommodations

• Workplace adaptations

• Career planning

TO DO ADDED...

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J. Social Participation

Covers topics like:

• Family interactions

• Community activities

• Travel and recreation

• Self-advocacy

TO BE ADDED ...

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K. Training Activities for Families

Covers topics like:

• Home exercises

• Skill-building checklists

• Progress tracking

TO BE ADDED ...

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SOURCES

[1] "Living with Usher Syndrome: Tech Tips and Resources". Usher Syndrome Coalition.

[2] "Living with Deafblindness". Deafblind Information Australia.

[3] "Tips for Students with Usher Syndrome". Nevada Dual Sensory Impairment Project.