How is the degree of disability determined for ALS?

In Germany, the degree of disability (GdB) is a measure of the extent to which participation in society is impaired by health problems. It is determined in steps of ten from 10 to 100. It is not about how able someone is to work, but about the effects in all areas of life. People are considered severely disabled if they have a GdB of at least 50.

Legally, the assessment is based on the Versorgungsmedizin-Verordnung (VersMedV) and its annex, the Versorgungsmedizinischen Grundsätzen. These principles are the binding basis for the assessment under the law on severe disabilities. Even if an illness is not explicitly mentioned there, a GdB can still be determined; the assessment is then carried out by analogy with comparable health disorders.

In the case of ALS, there is no separate fixed table value for “ALS” alone in the currently available version of the medical care principles. Therefore, the GdB is not assigned according to the diagnosis as such, but according to the actual loss of function, for example in walking, grasping, speaking, swallowing, breathing and the loss of independence. The neurological part of the VersMedV generally focuses on how pronounced the deficits are; very high values of up to 100 can be achieved with comparable severe paralysis.

For ALS, this practically means that the more the disease progresses and the more muscle weakness, paralysis, wheelchair use, loss of communication, artificial nutrition or ventilation restrict participation, the higher the GdB is usually. The German Society for Muscular Dystrophy points out that ALS is not adequately represented in the tables and that, in their opinion, those affected should be assessed with at least GdB 80, but usually with GdB 100. This is not a binding legal standard, but it is an important professional orientation in practice.

The GdB is independent of the profession practiced or aspired to and says nothing directly about the degree of care or reduced earning capacity pension. In the case of ALS, an aggravation or redetermination application can also be submitted at any time if the restrictions increase.

The following are therefore particularly important for an application for ALS: medical findings on motor skills, gait, arm/hand function, speech and swallowing disorders, respiratory function, need for aids and existing dependency on support.