DLA (Disability Living Allowance) tips  

Many children and adults with nystagmus receive Disability Living Allowance (DLA) to help with everyday challenges. These range from not being able to drive or use public transport safely to struggling with household tasks or simple social activities. However, first applications are often turned down. Below are some arguments put forward by the parents of 14 year old Angela (we’ve changed her name) who has albinism and nystagmus. Their appeal was successful and we hope others will find these suggestions helpful. 

For further help with DLA applications or appeals, contact john.sanders@nystagmusnet.org.  

Getting around/Indoors 

• Angela needs guidance and support indoors to cope with changes in environment and to ensure her safety. She cannot negotiate stairs which are not clearly marked with contrasting edging, she cannot use escalators without assistance. 
  

• Angela needs guidance to mobilise in areas offering poor colour contrast with obstacles and or people. 
  

• She relies on others to locate people in crowded/large/bright environments. 
  

• Angela is unable to locate the boundary between floor and wall when similar colours are used on both. 
  

• Buying a birthday card is impossible for Angela to do independently, despite this being a simple task for her younger sister; she can simply be given the money outside the shop. Someone has to enter the shop and physically point out the correct section for Angela to then choose a card from.

• This problem is repeated in many types of shop from newsagents where she would be unable to locate individual magazines without guidance, to music stores with similar identification problems with location of goods in addition to inability to read the CD case listing, through to clothes stores where she is unable to read size labels. Prices, especially when located on shelf edge labels or listed on top of display areas are often inaccessible to Angela, even with the use of low vision aids.

Getting around/Outdoors 

• Angela cannot go to a new destination unaccompanied; she has never been on public transport alone because of the inability to orientate to new environments independently. 
  

• Angela is driven to school in a taxi funded by the local council as it was recognised that she could not safely use the school bus which is available. At this moment she is unable to walk to the bus stop due to her inability to safely cross roads, read bus numbers etc. 
  

• She needs help checking road signs and street names. 
  

• She cannot read door numbers from the footpath. 
  

• Angela cannot differentiate the kerb edge or slopes. She also needs guidance on steps lacking contrast/hazard strip. 
  

• Her photophobia causes a reduction in vision outdoors, even on an overcast day, experiencing a dramatic exacerbation to this reduction from sunshine, snow reflection and artificial lighting. Light reflective surfaces like concrete also cause glare which reduces her ability to see. The hospital records her visual acuity in a darkened room allowing Angela optimum vision, yet her corrected vision is still much reduced. 
  

Help with toilet needs 

• Angela needs guidance to locate toilets in public places. 
  

At mealtimes 

• Angela needs help to read menus in restaurants. 
  

• Angela needs drinks poured out for her if contrasting crockery is not available. 
  

Cooking 

• Angela is not always able to read sell by dates even with the use of low vision aids which could lead to health issues.  
  

• We cannot allow Angela to boil an egg as she would be unable to see the water in the saucepan. We have had to purchase talking scales and specialist measuring jugs etc for her to be able to undertake the simplest of cookery tasks. 
  

• Lack of contrast in the cutlery drawer could result in a puncture wound when trying to locate a sharp knife to use 
  

• Angela cannot see cooking directions on food packages and requires someone to read it to her 
  

Help with medical equipment 

• Angela is unable to see the print on prescription labels  
  

• She requires the information leaflet for any medication to be enlarged  
  

Communication and reading/Schoolwork 

• Angela is educationally statemented and requires a substantial amount of support both in the classroom and with her mobility 
  

• Angela requires textbooks and other literature to be adapted to her special needs by us as well as teaching staff 
  

Communication and reading/Other areas 

• Angela requires mail to be read or enlarged for her, a problem which will escalate as she gets older (she would have difficulty reading this letter and would require it to be adapted) 
  

• When sourcing information from the internet, not all WebPages magnify appropriately and can be too busy, have insufficient contrast and have high glare backgrounds preventing Angela locating information. She then requires someone to proof read the information in order to select the necessary section, then copy and paste it onto Word so that it can be enlarged, converted to comic sans font and adapted to a non-glare background 
  

• Angela needs someone to read instructions for household items 
  

• Angela is registered partially sighted and we have been told she will never be able to drive. We receive catalogues from large print book companies as she is unable to read standard text in books 
  

• Verbal guidance is needed for bus timetables, she needs to ask for help, Angela does not have the confidence to go on a bus on her own, and she needs someone with her to guide her 
  

• Angela has difficulty reading CD labels because of lack of clarity as well as font size, We have to retype the label onto A4 paper with an enlarged font 
  

• Word search and crossword puzzles need adapting for Angela to complete them 
  

Social / Leisure Activities 

• Angela is always taken to friends’ houses because she cannot cross roads unaided, read road signs or house numbers. 
  

• Sporting activities are restricted unless Angela has someone with her as she has problems tracking objects. She finds catching a ball extremely difficult in good lighting conditions and impossible in bright conditions. She needs guidance to stay within the boundaries of a sports pitch and relies on her team members to warn her when the ball is heading towards her when participating in sports at school in accordance with the National Curriculum; she is unable to compete at tournament level because of her vision. 
  

• Angela cannot participate with her peers in tennis, badminton and basketball as she requires a large, high contrast ball and dim lighting conditions, therefore she is isolated.

Angela’s father points out that the list of activities of daily living affected by her vision is by no means exhaustive, but adds that it “illustrates the extra input required by our 14 year old daughter, we as well as Angela’s friends and teachers in an effort to allow her as near normal life as possible with her sight disability.”