“Is my child eligible for a ‘severely handicapped’ identification card?” – Nearly all parents of children with diabetes ask this question at some time. Dr Simone von Sengbusch presents the advantages and disadvantages of this ID.

“Isn’t a ‘severely handicapped’ identification card a negative label in itself?” This is how some parents react to the words ‘severely handicapped’. Other parents are more readily willing to make use of all the advantages this ID card has to offer.

How did the German laws for the handicapped originate?
The laws for the handicapped were formed long ago to take care of war victims and their families. In 1916, the first evaluation took place, and the rules set down. In 1974, this law was expanded to include considerably more conditions, and is now to be found in the ninth book of the German Code of Social Law (SGB) IX.

The criteria are stipulated in the healthcare policies of the Federal Ministry of Labour and Social Affairs (www.bmas.bund.de), and are overseen by a Federal Medical Commission.

The German Code of Social Law
The German Code of Social Law (Sozialgesetzbuch) consists of 12 books on the statutory laws of social insurance and welfare benefits. The ninth book (SGB IX) stipulates policies for the disabled and those with pending disabilities (rehabilitation laws) and their rights.

The SGB IX aims for equal opportunities for handicapped people through benefits in employment, public transport and taxation. These benefits are known as ‘compensations’.

Is a child with diabetes ‘handicapped’?
At first glance, one could never imagine that a child or adolescent with type 1 diabetes could ever be described as being handicapped. The children in question and their families, however, know only too well the hidden limitations and burdens that diabetes therapy and management places upon them, day in day out. Other problems involve more banal things such as whether or not to allow the child to take part in class excursions or camps.

Although children are not hindered in their performance, the word ‘disabled’ implies just that, namely, ‘unable to participate in the society’. To enable this participation, however, is exactly what the laws for the handicapped are all about.  The degree-of-disability is calculated on a scale of 0 to 100. A ‘severe’ classification is issued to those with at least 50 points.

Where to acquire a degree-of-disability assessment
The degree-of-disability is assessed at Social Security (Versorgungsamt). It is here that the degree-of-disability is ascertained, and certain ‘letters’ issued. Different letters represent different types of benefits. When this assessment is complete, the family receives an official notification. Children with type 1 diabetes generally receive a degree-of-disability of 50 and the letter ‘H’.

The letter ‘H’
The letter ‘H’ represents compensation due to helplessness and is generally issued to people with type 1 diabetes up to the age of 16 (with the exception of those with an unstable metabolic state, who can have it until the age of 18). The benefits are oriented mainly on the letter ‘H’ as opposed to the number of points.

The letter ‘B’
Only in exceptional cases do parents of a child with type 1 diabetes receive the letter ‘B’ on their passes. This is issued to people needing the assistance of a second party due to disorientation and/or physical disability, i.e., this mark is largely for people with severe motoric disabilitis, blindness, mental retardation, or adult helplessness.

‘Severely handicapped’
The benefits of the ‘severely handicapped’ status is felt mostly in the areas of income and income tax, mobility, living quarters, communication and media, choice of profession and job security, social insurance and pension. Many of the German states offer comprehensive brochures on this theme.

Degree-of-Disability of 40/50 and the letter ‘H’

Advantages

• Tax rebate of 3 700 EUR.
  
• Free pass for public transport and exclusion from the vehicle ownership tax.
  
• Discounted entry fees, e.g., to cinemas or amusement parks.
  
• Protective labour laws.
  

Disadvantages

• Possible psychological repercussions of being categorized as ‘handicapped’.
  
• Considerable reduction of tax-free income when, at 16 years of age, the letter ‘H’ is dropped.
  
• Disadvantages with certain insurances (e.g., disability insurance).

Advantages can revert to disadvantages
In order to receive assistance for integration (e.g., at kindergarten or an accompanying person at school), an ID for the severly handicapped is not necessarily a requirement, but can be an advantage. Children with type 1 diabetes are only given placement preference in terms of geographical location.

This rule, however, varies from state to state and from university to university.  
On entering a profession, does one have to reveal his or her ‘severely handicapped’ status? The answer tends to be no, according to the Equal Opportunities and Antidiscrimination Act, but there is no hard and fast rule.

Whether or not the ‘severely handicapped’ status should be revealed depends mainly on the type of profession sought (with or without tenure), whether private or in the public service, or on the generosity of the employer.

How long is the ID valid?
Due to the constant reassessment of the need for the letter ‘H’, the ID is usually issued on a temporary basis until the age of 16, needing regular renewal. After this, it becomes permanent due to the numerical points.

Denial of the ID?
As type 1 diabetes is incurable, it is very unlikely indeed that the ID could ever be denied. It can be reassessed, however, should the medical basis on which it was issued change considerably. Even in the case of a voluntary renunciation of the benefits, the official status remains and can be reactivated on request. Even if the ID is returned, forgotten, lost, or overdue, Social Security will not erase the status.

Who can help me with the application?

• Social advice office
  
• Social Security
  
• Local delegates for people with disabilities
  
• Accountants (on the financial side)
  
• Brochures
  
• Relevant internet sites
  
• Diabetes Societies
  
• Legal offices (on the legalities)

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Dr Simone von Sengbusch
Mobile Diabetesschulung SH
Universitätsklinikum Schleswig-Holstein
E-Mail: sengbusch@paedia.ukl.
mu-luebeck.de