Support and advice for children and adolescents in need of care

Children and adolescents may require long-term care. They represent a relatively small fraction of the total number of people in need of care in Germany, which currently stands at 5 million (2021 figure). They and their families are often confronted by complex challenges. 

Most children and adolescents in need of care have a congenital disability or chronic illness. Their situations differ significantly from those of older people in terms of the support they need and the challenges faced by their families. In addition, each individual child faces a unique set of circumstances. 

Children and adolescents in need of care are almost always cared for at home by their families, even in the case of severe disabilities illnesses. Everyday family life is largely dictated by the treatment and care needed by the child. Another challenge is presented by the organization and financing of the necessary supports. On top of that, parents worry about their child’s growth and development, education and possible future employment, as well as their own needs and those of the child’s siblings. 

Various benefits and financial supports help parents to provide their children with the treatment and care they need and to organize daily family life. In the first instance, these comprise the following: 

• health insurance benefits (defined in the Fifth Book of the German Social Security Code (SGB V)) 
• care benefits (defined in the Eleventh Book of the German Social Security Code (SGB XI)) 
• participation benefits (defined in the Ninth Book of the German Social Security Code (SGB IX)) 
• compensation for disadvantages due to having a severe disability (defined in the Ninth Book of the German Social Security Code (SGB IX)) 
• support from associations and foundations 

It is often difficult for families to access information about all grants available to them and about appropriate, child-oriented services. The support provided by self-help organizations, parent support groups and local advice centers dedicated to care and participation is particularly important and helpful in this regard. They frequently also provide help with claims for benefits and legal difficulties. 

Parents can receive long-term care insurance benefits for their children. As a prerequisite, the Medical Review Board must have carried out a care assessment and determined that the child has a need for care.  

As babies and younger children are normally dependent on care on a daily basis, the abilities of children with a disability or chronic illness are compared with those of healthy children of the same age as part of the care assessment.

All babies up to the end of their first 18 months of life are assigned a care grade that is one grade above that was determined in their care assessment. Once they have reached the age of 19 months, they are assigned their assessed care grade without having to undergo a repeat care assessment. The same rules used for adults apply as of the child’s eleventh birthday. 

What care benefits are received by children and adolescents? 

Children and adolescents are entitled to the same financial benefits as adults. The amounts of the individual benefits are also the same.

For children assigned care grade 2 or higher, parents can, for example, choose whether they want to receive the care allowance and care for the child themselves or whether they want to receive a subsidy to cover the cost of using a care and support service (non-cash care benefits/care benefits in kind). These two benefits can also be combined. 

Support from home care services can be particularly helpful if children require special treatment or intensive care. Children’s care services offer an alternative to “normal” home care services, which usually specialize in the care of older people. 

Participation benefits enable children and adolescents with a disability or chronic illness to access additional supports and services in the areas of medical rehabilitation, employment, education, social participation and accommodation. This also applies to children and adolescents who are at risk of disability. In other words, they are entitled to avail of preventive services if they are not yet at the point of being disabled or if their becoming disabled cannot be determined beyond all doubt but, from a medical perspective, is likely to occur.

Participation benefits can include financial assistance, patient aids, personal assistants and other forms of relief and support. For example, they enable the child to attend a kindergarten/pre-school, school and participate in higher education or training, as well as avail of therapies that encourage them to manage their disability independently. 

In place of services or non-cash benefits, they receive a cash payment or vouchers to be used for participation and rehabilitation, which they organize themselves. They may, for example, pay for a personal assistant to support them in all aspects they require, including the provision of care.  

For more information about participation benefits and the personal budget, see Aktion Mensch e.V.

The Federal Association for People with Physical and Multiple Disabilities (Bundesverband für körper- und mehrfachbehinderte Menschen e.V.) has published a brochure called “My child is disabled – an overview of available help”, which provides an overview of the care benefits, participation benefits and other social security benefits that are potentially available to children and adolescents with disabilities and their parents.

Children and adolescents who have a degree of disability (DoD) or a severe disability are entitled to certain compensations for disadvantages. These depend on the precise degree of disability, as well as additional classifications such as the marker “aG” (indicating extreme difficulty walking) or “Bl” (indicating blindness). 

Parents, for example, receive tax relief (standard deductions for disabled persons) and may, in certain circumstances, apply for a disabled parking space or be entitled to free travel on local and national public transport.  

For more information about the entitlements to and prerequisites for tax relief, visit the “Care options” (“Wege zur Pflege”) portal provided by the Federal Ministry of Family Affairs.

Applications for a DoD or pass for severely disabled persons must be submitted to the local pensions and social security authority (Versorgungsamt).  

The contact addresses of the authorities responsible for these applications are available from the Federal Association of Integration Offices and Central Welfare Offices (Bundesarbeitsgemeinschaft der Integrationsämter und Hauptfürsorgestellen (BIH) e.V.).

Associations and foundations 

Some foundations and associations take families under their wing by covering or subsidizing costs that are not covered by social insurance. For example, they may fund special therapeutic products and patient aids, technical equipment for use at home or recreational trips for children in need of care and their families. 

The National Association of German Foundations (Bundesverband Deutscher Stiftungen) provides a foundation search on its website.

Everyday relief and support are important, for example, for the health of family carers and to ensure that parents can devote more attention to the siblings of the child or adolescent in need of care. It also enables the child or adolescent to participate in education and social life as independently as possible. 

Long-term care insurance benefits 

Children and adolescents assigned care grade 2 or higher are entitled to various long-term care insurance benefits that provide financial relief. Children with care grade 1 and their families are entitled to care advice and training free of charge and also qualify for the additional relief allowance.  

Additional relief allowance

Families can claim a monthly subsidy of 125 euros for additional care and relief services. This can be used, for example, to pay for help at home or for family support services, as well as other relief and care services that are recognized by the federal state. 

Respite care allowance

Parents can use respite care funds to finance daily or hourly care of their child by a family support service, for example. 

Short-term care

In justified exceptional cases, short-term care may also be provided in facilities for the care of disabled persons and youth welfare. It may also be provided in facilities for preventive care or rehabilitation, provided that the child’s family carer is availing of a service there and has been informed that the child can be accommodated and cared for there.  

If the child is not assigned care grade 2 or higher, the health insurance fund may cover the cost of short-term care under certain circumstances. 

Training courses in care

Training courses in care provide family carers with useful basic knowledge of their child’s illness and how to care for them. This helps them cope better with the challenges that arise on a daily basis when caring for their children. If the child is staying in hospital for a period of time, it is worthwhile inquiring there about training courses and asking for tips.

Other services and participation benefits

Children and adolescents with a disability or chronic illness can access further services and care and relief benefits regardless of their care grade.

Early intervention 

The earlier a child starts treatment or therapy, the more likely it is that their health impairments will be improved, remedied or managed independently by the child. Early intervention occurs in sociopediatric centers (SPZ) or early intervention centers.  

More information about early intervention is available from the Federal Center for Health Education (Bundeszentrale für gesundheitliche Aufklärung).

Pediatric and adolescent rehabilitation 

Rehabilitation facilities provide for the physical conditioning of children and young people who are affected by a disability or chronic illness in their everyday lives and their schooling. Rehabilitation teaches them how to manage their illness on a daily basis. 

For more information about what is involved in pediatric and adolescent rehabilitation, as well as the prerequisites and details of how to apply, contact the German Pension Insurance Organization (Deutsche Rentenversicherung, DRV) and the Alliance for Pediatric and Adolescent Rehabilitation (Bündnis Kinder- und Jugendreha e.V., BKJR).

School escorts and integration assistants for attending pre-school/kindergarten 

If children attend a mainstream pre-school/kindergarten or a mainstream school, integration assistants or school escorts help children with intellectual, physical or emotional disabilities with practical tasks that they are unable to complete independently. These include dressing and undressing, using the toilet, help with concentration difficulties and conflict with other children.

These services are usually offered by providers of child and youth welfare services or self-help associations. As this is a service that enables participation in education, all costs are covered. To avail of this benefit, a claim for integration assistance must be submitted. 

For more information about support for pre-school and school attendance, refer to Aktion Mensch e.V.

Family support and relief services, support for individual cases and open support services 

Various specialist services provide relief for families for a number of hours or days each week. They look after the children and adolescents, bring them to specific appointments, assume responsibility for their personal care needs or help them to develop practical skills such as cooking or traveling by bus.

These services are usually offered by providers of child and youth welfare services or self-help associations. The costs may be covered by different social insurance providers, depending on the child’s personal situation. The additional relief allowance can be used to cover the costs. 

For more information about family support services, family relief services and open support services, refer to Aktion Mensch e.V. 

Home nursing 

Children and adolescents can, if necessary, receive care at home from a nursing care service. This type of care can also be provided outside of the home, e.g., in schools and pre-schools. Pediatric nursing care services are available in some areas.  

Home nursing is a health insurance benefit and claims must be submitted to the health insurance fund.

More information about home nursing is provided by the National Association of Statutory Health Insurance Physicians (Kassenärztliche Bundesvereinigung KdöR (KBV)).

Supports for siblings 

Family life often isn’t straightforward for siblings who don’t themselves have a disability or chronic illness – they usually have to become independent at an early age and carry a heavy burden of responsibility. They may find self-help groups for siblings beneficial. There are also services that offer childcare and leisure activities for siblings. Services that provide family relief on an hourly basis can give parents more time to devote to siblings. 

Further information about relief services and how they are funded is available on the familienratgeber.de family advisory portal (in German) provided by Aktion Mensch e.V.

Various social security benefits and statutory benefits are available to parents and other family carers of children with disabilities and chronic illnesses.

Extended maternity leave

If the child’s disability is detected shortly after birth, maternity leave can be extended from eight to twelve weeks. Within the first eight weeks following the birth, the parents must submit a doctor’s certificate to the health insurance fund and inform the employer. 

Information about maternity leave is available on the family portal provided by the Federal Ministry of Family Affairs.

Child benefit

In certain cases, parents of children with a disability may continue to receive child benefit after the child’s 18th or 25th birthday. As a prerequisite, the disability must be recorded before the 25th birthday and children must be unable to provide for themselves. In this case, a life-long child benefit may be paid.

More information about child benefit for adult children with a disability is available from the Federal Association for People with Physical and Multiple Disabilities (Bundesverband für körper- und mehrfachbehinderte Menschen e.V. (bvkm)).

The Federal Employment Office (Bundesagentur für Arbeit) has more advice and application forms to download.

Child sickness benefit

The health insurance funds pay a child sickness benefit payment to employed parents who need to provide care to a sick child. If the child has a disability, the rules extend beyond the usual 12 years.  

Leaves of absence

Mothers and fathers in employment are entitled to parental leave. This is an unpaid leave of absence from their job for up to 3 years, which can mostly be taken flexibly, up to the child’s 8th birthday. Part-time working is permitted during this time. To compensate for loss of earnings, parents can apply for parental allowance for a period of up to 14 months. The disability or need for care does not have any effect on the entitlement to parental leave and parental allowance.

For more information about entitlements to and prerequisites for parental leave and parental allowance, refer to the familienratgeber family advisory portal provided by Aktion Mensch e.V. and to the Federal Ministry of Family Affairs.

In addition to caregiver leave or family caregiver leave, parents in employment can take a full or partial leave of absence from work to ensure the care of a child who is in need of care. The loss of earnings can be compensated for by means of an interest-free care loan.

For more information, visit the “Care options” (“Wege zur Pflege”) portal provided by the Federal Ministry of Family Affairs.

Carers accompanying a child in hospital or in a hospice 

The health insurance fund covers the cost of a carer to accompany the child if they require in-patient treatment in a hospital or hospice. This carer is also entitled to sickness benefit.

More information is available from the National Association of Health Insurance Physicians (Kassenärztliche Bundesvereinigung KdöR, KBV).

Social security for carers 

Long-term care insurance pays social insurance contributions for a carer provided that they have been recognized as the child’s carer.  

The Federal Association for People with Physical and Multiple Disabilities (Bundesverband für körper- und mehrfachbehinderte Menschen e.V) has published a guide for working mothers with disabled children (“Berufstätig sein mit einem behinderten Kind” – only available in German) with advice on how to balance working life and caring for a child with a disability. 

Children and adolescents in need of care are almost always cared for at home by their families, even if they have a severe illness or disability and require intensive medical care.  

The costs of modifying their living space may be (partially) covered by long-term care insurance or by a rehabilitation funding organization. Specific funding programs are also available in some states and municipalities.  

Details are available from local housing and care advice centers or the funding database of the Federal Ministry for Economic Affairs and Climate Action.

What types of accommodation are available for children and adolescents with a disability? 

If care at home is not possible or cannot be provided temporarily, there are various accommodation options and residential facilities offering therapeutic pedagogy (special education) and integrated living for children and adolescents in need of care. These mainly consist of residential and care facilities and group homes.  

Some of these facilities specialize in certain disabilities, illnesses and treatments, e.g., ventilation, epilepsy, intellectual disability or multiple disabilities. Boarding, i.e., residential schools can provide all-day care for children and adolescents, for example, if this is required to enable school attendance. Integration assistance covers the costs of special needs residential schools. Parents are required to pay for accommodation and meals. 

If children and adolescents in need of care are living in a group home with outpatient care services, they may receive a monthly flat rate of 214 euros from long-term care insurance.

The addresses for various types of accommodation for children and adolescents with a disability can be found in the database of the familienratgeber.de family advisory portal provided by Aktion Mensch e.V.

Complementary Independent Participation Counseling (EUTB) provides individual counseling and advice on all questions relating to the care and participation of children and adolescents with disabilities and chronic illnesses. This includes advice on statutory benefits, claims procedures, the assessment of a care need and other support services. The advice is free of charge and independent of health insurance funds and other authorities. 

For more information about EUTB and advisory centers near you, visit the website operated by the Fachstelle Teilhabeberatung agency for participation counseling.

Care advice centers can provide information about care benefits and local services, for example. On request, they can also help with care planning. In addition, children in need of care are legally entitled to free personal care consulting.  

You can find care advice centers near you in the Center for Quality in Care (Zentrum für Qualität in der Pflege, ZQP) database.

Families often benefit from the support of self-help organizations, where they meet other people in similar situations and can talk about their experiences and exchange useful information. Self-help organizations usually also provide advice on claims and offer support on legal issues, such as the lodging of objections or complaints – provided that they have a legal department. 

A nationwide database containing the addresses of self-help organizations is provided by the National Contact and Information Point for Encouraging and Supporting Self-Help Groups (Nationale Kontakt- und Informationsstelle zur Anregung und Unterstützung von Selbsthilfegruppen, NAKOS).

You will find more advice centers near to you that offer advice relating to disability and participation on the familienratgeber.de family advisory portal provided by Aktion Mensch e.V.

Useful links on the topic of children with disabilities and chronic illnesses are provided on the kindergesundheit-info.de website operated by the Federal Center for Health Education (Bundeszentrale für gesundheitliche Aufklärung, BZgA).