Mobility

As the diseases progress there will be varying problems with mobility.

In a mobile child, balance and mobility may become a problem. In this case, safety in and around the home environment should be of the utmost importance in order to minimise the risk of injury and falls.

Simple precautions around the home environment can also help. These may include ensuring that your child or loved one wears suitable and appropriate footwear, and that trip hazards are removed.

Seeking advice from allied health professionals

Taking advice on modifications and equipment can help provide individualised solutions to help your child or loved one to get the most out of life.

Allied health professionals, such as an Occupational Therapist or Physiotherapist, will be able to provide advice on overcoming mobility issues. You may find it valuable to initiate these conversations, including with your NDIS Local Area Coordinator (LAC), well in advance of anything being needed, as it can take time to make arrangements. Examples of how they might be able to assist include:

  • An Occupational Therapist may be able to provide advice on alternative ways of doing day-to-day things, as well as the best way to adapt your home for ease, comfort and safety.

If your home environment has stairs, they may be able to advise on the need for stair rails or a lift.

  • A Physiotherapist may be able to plan an individualised program with suitable exercises to assist with posture and coordination.

They can also give advice on walking aids, splints or braces for support.

Once a person is unable to move by themselves, they can offer advice on safe ways of moving or handling that will avoid injury to either the person being moved or their carer.

Modifications

Making modifications to your home environment will make caring for someone living with Tay-Sachs or Sandhoff disease easier.

Modifications can range from simple solutions, like rearranging furniture or shifting items in drawers and cupboards to ensure frequently accessed items are within easy reach, to more complex solutions like installing ramps.

The introduction of modifications to your home environment can be difficult to face, as it can mean realising that the disease is changing your child or loved one. The need for structural home modifications is likely to be higher in the juvenile and late onset presentations of Tay-Sachs and Sandhoff diseases, than in the infantile presentations.

While thinking ahead about more complex modifications that might be needed can be hard, it is important as it can take time for your requests to be processed. Assessment, funding and delivery can all take time.

Exploring the help available may also provide some comfort and help in dealing with any fears you may have about what might happen next. It may be helpful to ask your care and support team about the best time to undertake a full assessment. This will involve the NDIS, and usually an allied health professional, such as an Occupational Therapist or a Physiotherapist will undertake the assessment.

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Modifications to the home environment require professional support from a skilled allied health professional, such as a Physiotherapist or Occupational Therapist. Often, they will be facilitated through the NDIS.

Some of the factors that may influence the options available to you include:

  • the age and size of your child or loved one
  • their level of mobility
  • your housing situation, including whether you own or rent, and the layout of the home you live in
  • the rate of progression of your child or loved one’s condition
  • your family’s goals and priorities

These reasons can make it difficult to predict the exact nature of future needs, and so allied health professionals may be unable to prescribe modifications too far in advance. The options and solutions may need to be regularly revisited as needs change. It can be helpful to ask for six-monthly meetings (plan reviews) with your NDIS Local Area Coordinator (LAC).

Examples of modifications to the home and car, particularly for older individuals, may include:

  • Ensuring the car has space for a specialised stroller or wheelchair
  • Installing ramps into the home for any doorways with steps
  • Widening doorways to accommodate a specialised stroller or wheelchair
  • Installing stair support in homes with multiple floors
  • Installing bathroom rails

Equipment

There are many forms of practical equipment that can help individuals with Tay-Sachs or Sandhoff disease be more comfortable and enable you to safely care for them. Many pieces of equipment can be tailor-made so that they fit each child perfectly.

Similar to modifications, the need for equipment is something that can be explored in conversations with the NDIS and allied health professionals. It can be helpful to have these conversations on a regular basis, to take into account the changing needs of your child or loved one.

You may find that equipment listed in your child or loved one’s NDIS plan is generic in nature. For example, a supportive seat may be listed without any further details. This is because an allied health professional will need to undertake an assessment first. A range of processes need to be followed before your child or loved one will receive the piece of equipment, and that these processes can all take time.

Rare Find information iconFurther Information

Obtaining suitable equipment will require professional support from a skilled allied health professional, such as a Physiotherapist or Occupational Therapist. Often, this will be facilitated through the NDIS.

Some of the factors that may influence the options available to you include:

  • the age and size of your child or loved one
  • their level of mobility
  • your housing situation, including whether you own or rent, and the layout of the home you live in
  • the rate of progression of your child or loved one’s condition
  • your family’s goals and priorities

These reasons can make it difficult to predict the exact nature of future needs, and so allied health professionals may be unable to prescribe equipment too far in advance. The options and solutions may need to be regularly revisited as needs change. It can be helpful to ask for six-monthly meetings (plan reviews) with your NDIS Local Area Coordinator (LAC).

Equipment can help your child or loved one to continue to experience their world, including through play, increased mobility, and safe bath times and mealtimes.

Some examples of equipment support options to discuss with you care and support team are touched upon below.

Equipment to support postural control and positioning:

  • Floor positioning, to help a child or infant to achieve and maintain a desired position of comfort on the floor. These positions could include lying on their side, propped up on an incline, or on their stomach.
  • Seating, including for play, feeding and mealtimes, and for comfort and relaxation.
  • Standing support, such as standing frames, orthotics to help position feet and ankles to support standing, and supportive footwear.

Equipment to support mobility:

  • Walking frames
  • Specialised pushers, strollers, buggies or wheelchairs

Car seats:

  • The Australian Car Restraint Resource Initiative or your state and territory government, may help you find an authorised restraint fitter near you:
    Australian Car Restraint Resource Initiative, Homepage: https://acri.com.au/
  • You may benefit from a Physiotherapist or Occupational Therapist attending the fitting appointment with you.

Equipment to support bath time:

  • Supportive bath or shower chairs
  • Portable raised bath
  • Hoist (for older or larger individuals)
  • Safety mats

Equipment to support changing:

  • Change tables
  • Toilet surrounds
  • Toilet seat inserts
  • Specialised potties
  • Continence aids
  • Keep an eye out for shoes and clothes that are easy to put on and take off of your child or loved one.

Equipment to support play:

  • Toy frames to hang toys within reach
  • Adjustable play surfaces, such as a tray or table with adjustable height

Equipment to support sleep:

  • Explore any changes to your child’s sleeping arrangements with the support of an Occupational Therapist. It is important that any interventions maintain safe sleeping arrangements.
  • Pressure relieving surfaces can be explored if required.
  • You may wish to monitor your child or loved one quite closely during their sleep to ensure they are safe. Audio and video monitors can assist with this.

When it came to Archie’s care, we made the decision to do it all from our home. We wanted him to be comfortable in his own home. We attended therapy sessions and when I decided they were too much we stopped. Our best days were days laying on the couch, snuggled up and watching Paddington Bear. All Archie wanted was love. To be in our arms and surrounded by our love. We took him on holidays but soon it was too much for him to leave the house, so we made our house his sanctuary. All the things he loved surrounded him. We set up a queen bed that we could all share. We read stories, sung, cuddled, laughed, smiled and told him all our secrets. All your child really needs is love. Yes, medical care is needed. We had doctors and the palliative care team visit regularly to ensure we were giving the right meds and meeting all of Archie’s medical needs. We did all we could to give him the best.

– Helen, Archie’s Mum