The procuration of aid tools via VAPH

In general certain procedures apply to providing aid tools. These procedures can take a few months because the VAPH, this is the Flemish Agency for Disabled Persons, applies the same rules for people with ALS as for any other applier. It often happens that the wait is too long for ALS patients (pALS). When the diagnosis is made after the age of 65, people no longer qualify for reimbursement.

The following factors can determine the choice of one communication aid or another:

- the limited energy a pALS has;

- the time it takes to learn how to control an auxiliary communication aid;

- the age of the patient. Elderly have often reservations about using a computer or type machine.

- the progression rate of the disease;

- the possibilities of the surroundings. Speech output turns out to be essential for the differences in insight concerning privacy. Some find written output threatening because everything they say is on paper. Others find the robotomorphic voice of the aid tool attracts too much attention because it cannot whisper.

- the audibility of the aid tool, which is judged differently by everyone;

- the situation where the aid tool will be used. The position of the head is highly important to the audibility of the possibly remaining speech, to the movement possibilities, in preventing suffocation and in controlling the aid tool. It is very difficult to find a solution for the problem of a bad head balance. A strengthened neck collar to compensate a bad head balance can influence the view to the communication aid in a way that it is not longer possible to use it.

Someone who is still able to walk and can carry his own communication aid has other criteria to the aid tool than someone who is in a wheelchair. With a limited use of the arm/hand function, it is easier to bring along a communication aid in a wheelchair. In bed an aid tool is often difficult to use because you can’t see your hands. As first communication aid we try to find in which way a pALS can attract attention with an audible alarm. A pALS also wants to be alone sometimes. But to the patient as well as to the family it would be a big relief to know that there is a reliable way to attract someone’s attention when there is a problem.

To be able to write as long as possible, the following attributes can be useful:

- a special pen such as a felt-tip pen or a thickening (tube isolation) to facilitate the grip (this can also be used with cutlery);

- a knee table to easily adjust the position of the worktop;

- a worktop on the wheelchair with a notch for the trunk;

- an antiskid mat;

- arm supports to the table or wheelchair or a positioning pillow (banana pillow);

- a sort of letter chart, which can be helpful in an early stage to support the still remaining, but poorly intelligible speech.

We can put that therapists who work with pALS can’t use standard solutions. The people, their problems and circumstances differ so much that very individual choices have to be made time and time again. It is important to the therapist to be well informed about all the possibilities and the resulting problems. A multidisciplinary approach of the problems is therefore essential.