Relief for families: services at a glance

Legal status: 08.10.2026 (federal law, checked against the statutory text). Amounts and requirements of care insurance are in the article Care benefits. Legal terms are translated here for understanding; the German wording of the law is what counts.

What the 2021 guideline recommended for supporting relatives

In a consensus-based recommendation (strong consensus), the guideline stated: psychosocial support services should be based on the subjective needs of parents and relatives, include help at all levels (psychological, psychoeducational, material help) and be available suited to life stage, topic and need. ^{[1, Rec. 106]} The guideline also summarised British recommendations: families including siblings and carers should be offered that their needs are also taken into account. This concerns in particular personal, social and emotional support, practical support in the caring role (for example through breaks and emergency plans) and a plan for future care. ^{[1, Ch. C.2.1]}

When making decisions about therapy and support, it should also be checked whether a measure fits the whole family including siblings. ^{[1, Rec. 6]} On this too: Siblings of children with autism.

Psychoeducation and advice

According to the guideline, all parents or primary caregivers should be offered psychoeducation about autism and possible co-occurring conditions after the child’s diagnosis, in a group or individually and in the detail individually necessary. If parents, siblings or other relatives wish, individual psychoeducation and advice on dealing with the child or adolescent should be offered. Siblings should be offered appropriate support and psychoeducation (individually or in groups). ^{[1, Rec. 106]}

For adults on the spectrum, the guideline stressed: parents who are not legal guardians can, at the request of the person with autism, be involved in therapy. ^{[1, Rec. 107]}

Self-help

The guideline recommended (consensus-based, strong consensus) that children and adolescents with autism, their families and caregivers should receive contact information on self-help services: on self-help organisations and groups and on personal counselling by others affected. They should be supported in seeking out these services. Relatives of adults too should receive information on self-help. Professionals should know the regional and national services. ^{[1, Rec. 120]} On the effectiveness of self-help in autism, according to the guideline there were no studies; for adults a research gap was to be noted. ^{[1, Ch. C.10.6]} In a small qualitative survey of ten fathers in the USA that the guideline reproduced, many fathers wished for a place where they can obtain information and exchange with other parents. Many found this very helpful and stabilising. Because of the small and selective sample, generalisability is strongly limited. ^{[1, Ch. C.2.2.2]}

Relief through care insurance

If a care level exists (see Care level for autism), two benefits in particular come into question for relieving family carers:

• Relief amount: up to 131 euros per month, earmarked for quality-assured services to relieve family carers and to promote the independence of people in need of care, for example for day or night care, short-term care, outpatient care services and services recognised under state law for support in everyday life. ^[4]
• Respite care: If a carer is prevented from providing care because of holiday, illness or other reasons, the care insurance fund, from at least care level 2, covers the proven costs of necessary replacement care for a maximum of eight weeks per calendar year. ^[3]

The exact requirements, amounts and deadlines are in the article Care benefits.

Reform planned, but not yet law: On 30.09.2026 the Federal Cabinet adopted the draft of a Care Reorganisation Act (Pflegeneuordnungsgesetz). Among other things, it provides for replacing the relief amount with a community budget (up to 175 euros per month, up to 300 euros up to the 25th year of life) and introducing a new care accompaniment that is also meant to take the concerns of caring parents into account. It is planned to come into force essentially on 01.01.2027. ^[5] Until there is a law, the rules named above apply. Context: Care insurance: cabinet adopts Care Reorganisation Act.

What else you should know

• You may accept help. That the guideline explicitly names the needs of relatives means: relief is part of support.
• Not everything depends on the care level. Advice, psychoeducation and self-help can come into question independently of it.
• What exists in your region, advice centres can tell you. An overview of who is responsible for what is given in the article Understanding the support system.
• Applications and objections: Applying and filing an objection.

Sources and literature

1. DGKJP, DGPPN et al. Autismus-Spektrum-Störungen im Kindes-, Jugend- und Erwachsenenalter. Teil 2: Therapie. S3-Leitlinie, AWMF-Reg.-Nr. 028-047, Stand Text 02.05.2021 (Empf. 6, 106, 107, 120; Kap. C.2.1, C.2.2.2, C.10.6). – Guideline (in German); expired on 23 March 2026 (see no. 2)
2. DGKJP. Aktuelle Leitlinien (Eintrag 028-047: „Gültig bis 23.03.2026“). https://www.dgkjp.de/wissen/aktuelle-leitlinien/ – Professional society (website in German)
3. § 39 SGB XI – Verhinderungspflege (www.gesetze-im-internet.de/sgb_11/__39.html). – Statute (German federal law, in German)
4. § 45b SGB XI – Entlastungsbetrag (www.gesetze-im-internet.de/sgb_11/__45b.html). – Statute (German federal law, in German)
5. Bundesregierung: Entwurf eines Gesetzes zur Neuordnung der Pflegeversicherung (PNOG), Kabinettsentwurf vom 30.09.2026. – Draft bill, not valid law (in German)