According to the 11th German Social Code (SGBXI), persons are in need of care if they are restricted in their independence and abilities due to health-related impairments and are therefore dependent on the help of others. These impairments may be physical, cognitive or psychological. The need for care must be permanent, but at least for six months, and of a certain severity (cf. §§ 14,15 SGB XI).
Since the severity of the symptoms in children with autism spectrum disorder (ASD) can be very different, the respective need for support also varies considerably. In most cases, it is not the physical impairments that are focused but rather restrictions in independence and coping with everyday life that justify a need for care in children with ASD.
Request for a nursing level
To receive a nursing level for your child, you have to apply to your statutory or private nursing care insurance fund. These are affiliated with the health insurance funds. Initially, a phone call or an informal letter is sufficient for the application. Your long-term care insurance fund will then send you an application form. If you need assistance in filling out the form, trained care consultants will be available to help you. Please contact your (statutory) care insurance fund or, in the case of private insurance, the Compass care consulting service:
(https://www.compass-pflegeberatung.de/). Local care advice centers also offer their support. On the website: https://www.pflegewegweiser-nrw.de/suche/beratungsstellen you can search for the nearest advice center in NRW for your postal code area. Analogous offerings also exist in all other German federal states. Once you have submitted the completed application to the long-term care insurance fund, it will commission the Medical Service of the Health Insurance Funds (MDK) or, in the case of privately insured persons, the Medical Service of the Private Health Insurance Funds (MEDICPROOF). After making an appointment, a specially trained appraiser will come to your home for a personal assessment.
Preparation of the assessment
Children with ASD usually have significantly higher support needs than neurotypical children of the same age. However, this need for support is not always immediately apparent to external persons. Therefore it is recommended to prepare in detail for the assessment with the help of care protocols/care diaries in order to present all important aspects as realistically as possible in order to receive the best support.
Sample nursing diary templates for download can be found at:
- https://www.familienratgeber.de/media/infomaterialien/downloads/familienratgeber-pflegetagebuch-sep19.pdf
- https://www.pflegeberatung.de/fileadmin/Beratung_und_Planung/Infomaterial/Pflegeprotokoll_Kinder.pdf
Additionally you should prepare all important documents for the assessment appointment.
This includes, for example, medical letters, hospital reports, reports from the daycare center or school, therapy reports, medication schedule and the yellow examination booklet.
These documents help the appraiser to get a comprehensive impression of your child, his or her abilities and support needs.
Procedure of the assessment
You should provide sufficient time for the appraisal appointment so that all important aspects can be discussed in detail. Make sure that the assessment can take place in a calm atmosphere without disturbances.
The assessment of the need for care is usually carried out by specialists in nursing or medicine who have extensive knowledge of disorders and impairments in children.
To obtain a comprehensive impression of the child’s need for support, the appraiser uses prescribed assessment criteria in six so-called modules.
The appraiser will ask you various questions about your child’s development and abilities and will also form his or her own impression through playful contact with your child. In addition, he or she will inspect the documents you have provided.
The entire findings of the assessment will be recorded in a care report. Depending on the extent of the impairment of independence and abilities, the nursing level is calculated according to a fixed method. In the case of children in need of care, the nursing level is determined by comparing the impairments of their independence and abilities with children of the same age.
A special regulation applies to children up to 18 months of age. They are basically classified one nursing level higher than older children and adults who achieve the same point values in the assessment, in order to ensure that children receive an appropriate nursing level despite their natural need for care at this age.
Potential difficulties during the assessment
Even if they have a lot of experience with children, appraisers are not always familiar with the special problems of autism. One aspect that is often underestimated is that children with ASD are, for example, purely motorically able to perform certain steps of personal hygiene, so that an expert comes to the conclusion that there is no impairment in this area (e.g. brushing teeth, going to the toilet). In reality, however, the parents/caregivers still have to spend a lot of time and commitment to motivate the child to perform specific actions, to supervise them and to control them, sometimes in very small steps. This still results in a large amount of time that has to be taken into account when assessing the need for care. The same applies to accompanying the child on trips to the playground, etc., if the child is not roadworthy for his or her age. Clarify how much care is needed even if it is not a matter of directly taking over an action, but of motivation, accompaniment and guidance.
File an objection
If you are of the opinion that the determined nursing level does not reflect the actual care and support needs of your child, you can file an objection with the long-term care insurance fund within one month (within one year if the objection notice is missing).
An objection may only be made by the person in need of care himself or his authorized representative. Initially, it is sufficient to file a brief, informal objection to the decision, indicating that the evidence will follow promptly. In this way, you can meet the deadline of one month on the one hand and have sufficient time to provide detailed and well-founded evidence for the objection on the other. It may be helpful here to seek support from a nursing care consultant. Make an appointment for this at a care advice center in a timely manner.
Use the nursing care report as a basis for your objection. You can request it from your long-term care insurance fund at any time if you did not receive it yet.
In order to substantiate certain circumstances that were not or not sufficiently taken into account in the expert opinion, you should again keep a care diary to support your arguments. Submit this to the long-term care insurance fund in addition to other reports, including those that were added after you received the decision.
In order to be able to prove timely receipt by the long-term care insurance fund, you should send the objection by registered mail with return receipt or by fax.
Services
If your child has been given a nursing level, he or she is entitled to various nursing benefits, some of which we present here:
Long-term care allowance
From nursing level 2, a monthly long-term care allowance can be paid out, which can be used for care and support at home.
| Nursing level | Monthly allowance |
| Nursing level 1 | 0 € |
| Nursing level 2 | 316 € |
| Nursing level 3 | 545 € |
| Nursing level 4 | 728 € |
| Nursing level 5 | 901 € |
Relief allowance
If your child has a nursing level and is cared for at home, he or she is entitled to a relief allowance of €125 per month.
This monthly relief allowance can be used for offers of support in everyday life. This can be, for example, the temporary care of your child by trained staff of certain institutions (e.g. outpatient care and nursing services) to relieve the caregivers.
Reconciliation of care and work
In order to be able to reconcile the care of your child at home with your job, the legislator provides various support options for close relatives. In case of care leave: https://www.bundesgesundheitsministerium.de/leistungen-der-pflege/vereinbarkeit-von-pflege-und-beruf.html or in case of family care leave: https://www.bundesgesundheitsministerium.de/service/begriffe-von-a-z/f/familienpflegezeit.html
under certain conditions there is the possibility to be released from work in whole or in part for a period of up to 2 years.
Ask for detailed advice on your options for claiming one of the above-mentioned care periods at a care advice center nearby. As health and long-term care insurance coverage is not always maintained by the employer, it is also important to receive comprehensive advice on individual social security during this time. An overview of all care services can be requested free of charge as a brochure on the website of the Federal Ministry of Health, or use the download option: https://www.bundesgesundheitsministerium.de/service/publikationen/details/pflegeleistungen-zum-nachschlagen.html