Healthcare provision for people with a disability

People with a disability often have unique needs based on their disability and these need to be taken into account when providing them with medical care. These needs differ significantly depending on the disability involved. For example, if a person needs to use a wheelchair, barrier-free access to their family doctor’s practice is essential. If a person is hearing impaired, they will have no difficulty entering the practice but may need a sign language interpreter to help the doctor understand them.

In particular, people with a severe disability or multiple disabilities may require medical care on a regular basis. In many cases, multiple disciplines and therapists are involved in their care. Coordination between all members of their care team is essential to ensuring that they receive the best care possible.

Some people with an intellectual disability require particular attention. It can be difficult for them to explain their symptoms to medical personnel in precise terms. Staff need lots of time and empathy to ensure that they receive high-quality medical care. However, modifying treatment accordingly is often impossible due to the time pressure associated with daily life in a medical practice. Staff often lack the necessary knowledge and experience to respond properly to the needs of people with a disability. In addition, reserve and anxiety may cause staff in the practice to feel overwhelmed when providing care to people with a disability.

This article discusses the entitlements that apply to people with a disability in terms of healthcare provision, existing healthcare offerings, and what people with a disability or their loved ones can do to help ensure that they receive the best medical treatment available.

Germany has signed the UN Convention on the Rights of Persons with Disabilities. This means that the government has an obligation to ensure that all people have equal access to healthcare provision, regardless of any disability they may have.
In Germany, a raft of laws, policies, and regulations are in place to ensure that people with a disability do not experience any disadvantages in the area of healthcare. The legal framework is defined, for example, in the German Social Code (e.g., SGB IX). There are also fundamental patient rights that apply to all patients. Some of these rights are enshrined in the German Civil Code (BGB). Often, however, regulations such as those on accessibility are still not fully implemented on a daily basis and this creates various challenges for people with a disability. 

The Social Security Office (Sozialbehörde) in Hamburg has published a brochure explaining essential information about patient rights in simple language (“Ihre Rechte als Patientin und Patient” – in German). 

The website patientenbeauftragter.de also offers information about your rights as a patient. There you will also find a link to the “Ratgeber für Patientenrechte” (Guide to Patient Rights) brochure (in German).

What are my rights in terms of informed consent?

Before any medical measure, including vaccination, complex diagnostic examinations, or surgery, doctors are obliged to ensure that patients are fully informed so that they can give their informed consent. This also applies to people with cognitive impairment. 

Doctors must explain procedures, risks, and chances of recovery in a way that the patient understands. Even if a patient is not competent to give their consent and has an appointed guardian (i.e., legal representative), doctors are still obliged to clearly explain to them the key facts relating to the medical measure. 

This means, for example, that doctors explain the most important details in clear, simple language and use communication aids for supported communication where needed. Depending on the nature of the disability, these aids include, for example, symbol cards, sign language, or technical communication aids (e.g., voice output communications aids).

If people with a hearing impairment need to use a sign language interpreter when attending a doctor’s appointment, the costs are normally covered by their statutory health insurance provider. However, this applies only to German-speaking sign language interpreters. If you require a sign language interpreter, you should inform your health insurance provider in writing as soon as possible. In most cases, the insurance provider will send confirmation that the costs will be covered. During treatment in hospital, the hospital itself covers these costs.

Various tips for hearing-impaired patients when visiting a doctor are provided in a brochure published by the German Deaf Association (Deutscher Gehörlosen-Bund e.V.) (in German).

Everyone has a basic right to bodily integrity, which must always be taken into account in decision-making processes. This means that every individual can choose for themselves whether they want to be treated or examined. Even if an appointed legal guardian consents to treatment, doctors cannot simply go against the wishes of the patient. This applies to routine procedures, e.g., at the dentist and, above all, to complex procedures.

Everyone has the right to choose their own doctor. By law, medical care services should therefore be made available in accessible buildings. However, planning and building regulations only specify requirements for new medical practices. The same requirements don’t apply to existing practices. As a result, many medical practices are still lacking the accessibility or equipment needed by patients with a disability. For example, they may not have elevators for people with a physical disability or tactile guidance systems for visually impaired patients.

You can use our doctor search to find family doctors and physiotherapists in your area with practices that are accessible for people with a disability. You can select which accessibility criteria are important to you.

The patient service operated by the National Association of Statutory Health Insurance Providers (Kassenärztliche Vereinigung) arranges appointments with specialists for people with statutory health insurance. This service can be contacted by phone on 116 117 and also provides information about the accessibility of medical practices. You can also use the arrangement code (“Vermittlungscode”) on the back of the referral letter to request an appointment by email: https://www.eterminservice.de/terminservice.

Is the cost of suitable transport to the practice covered?

Long distances and inaccessible local public transport make it difficult for many people with a disability to visit a doctor. Statutory health insurance funds cover travel costs for their members to access medical treatment and tests in some cases. However, this is subject to certain conditions. For example, travel for the purpose of outpatient treatment may be prescribed for people assigned a certain care grade or who have the code “aG” (exceptional mobility impairment), “Bl” (blind) or “H” (“helpless” – as defined in German income tax legislation) on their severe disability pass. A prescription from the doctor treating the patient is usually required for this purpose.

More details of the circumstances in which travel costs are covered and when prior approval is required are provided in our article “Travel costs”.

Medical Centers for Adults with Disabilities (MZEB) were established in Germany to better cater to the needs of people with intellectual disabilities or severe multiple disabilities. The legal basis for this specialized form of healthcare was established in 2015 to provide medical care for patients in these categories based on their specific needs.

Each MZEB employs specially trained personnel from various health professions. This facilitates the coordination of various therapies. These centers are also better equipped to meet the therapeutic needs of people with a disability.

For example, depending on the type of disability involved, the patient may have difficulty communicating, so that special aids or a special communication approach may be required. Staff in an MZEB are trained to meet these types of needs. MZEB premises are, for the most part, fully accessible.

How can I avail of treatment in an MZEB?

An MZEB caters exclusively to adults with an intellectual disability or severe disabilities who would otherwise be unable to receive appropriate medical care. 

Certain criteria must be fulfilled in order for a person to access treatment at an MZEB:

• The patient must be an adult.
• The patient must have a degree of disability of at least 70.
• The patient’s severe disability pass must specify that they have a significant mobility impairment (G) or exceptional mobility impairment (aG) or that they are “helpless” (as defined in German income tax legislation) (H), blind (Bl), or deaf (GI).

Some MZEB centers also apply their own admission criteria. These are usually listed on the website of the individual MZEB.

A letter of referral from a family doctor is necessary to receive treatment at an MZEB. The costs of treatment at an MZEB are covered by statutory health insurance funds.

An overview of MZEB centers in Germany is available on the website of the National Association of Medical Centers for Adults with Disabilities (Bundesarbeitsgemeinschaft Medizinische Zentren für Erwachsene mit Behinderung e.V. – BAG MZEB).

What special healthcare services are available to children and adolescents with a disability?

Children and adolescents with a disability or chronic illness can receive treatment at a social pediatric center (SPZ). An SPZ employs various doctors and therapists who work together to meet the specific needs of children and young people. The medical professionals have received special training in involving the parents or caregivers of patients in their treatment.

A list of social pediatric centers is available on the website of the German Society for Social Paediatrics and Youth Medicine (Deutsche Gesellschaft für Sozialpädiatrie und Jugendmedizin e.V.).

If people are unable to take adequate care of their oral health because of a disability, the statutory health insurance funds cover the costs of additional dental care. These include special oral hygiene consultations and additional tartar removal. These measures seek to prevent dental disease. If the patient is unable to attend a dental practice, these additional dental services can be provided at home or in a care facility.

However, it may still be difficult for people with certain needs based on their disabilities to access suitable routine dental care.

Some dental practices are equipped to meet the needs of people with disabilities. You can search for suitable dental practices on the website of the German Dental Association (Bundeszahnärztekammer).

The German Dental Association website also offers an Oral Hygiene Manual (Handbuch für Mundhygiene) with detailed information on the topic of dental care and oral hygiene aimed at those caring for people with a disability (in German).

Information in simple language about the topic of oral and dental care is also available on the website of Special Olympics Deutschland e.V.

If a person experiences limitations due to a disability, various therapeutic services and medical aids may form an important part of their healthcare needs.

Therapeutic services

Therapeutic services are treatments provided by specially trained therapists. Therapeutic services include, for example, physiotherapy, speech therapy, and occupational therapy.

People with a disability often require these treatments for an extended period or even on a life-long basis. In such cases, a simplified approval procedure applies subject to certain conditions. For example, a therapist may prescribe a course of treatment for a total of 12 weeks on a single prescription. The number of treatment sessions per week would then depend on the requirements of the individual patient. 

More information about how health insurance funds approve applications for long-term cover for therapeutic services is provided in the patient information of the Joint Federal Committee (Gemeinsamer Bundesausschuss) (G-BA). 

Medical aids

Medical aids include, for example, wheelchairs, prosthetics, and hearing aids. Communication aids such as symbol cards and technical communication aids also fall into the category of medical aids. The costs of these products may be partly or fully covered by statutory health insurance funds. A medical prescription is required in order for health insurance funds to cover the costs of medical aids. The prescription must then be sent to the statutory health insurance fund together with a claim, in written form, asking for the costs to be covered. More detailed information about claiming insurance cover for medical aids can be found in the “Medical aids” article.

When a patient has specific needs due to a disability, it can be helpful to prepare well for a visit to the doctor. For example, when visiting a certain medical practice for the first time, the patient or a caregiver can phone the practice or send an e-mail in advance of the appointment. In this way, the staff in the practice can be made aware of any specific needs and the patient can find what accommodations the practice offers for people with disabilities. If, for example, the patient plans to bring an accompanying person, the practice staff can be made aware of this in advance.

There are also many general tips for preparing for a visit to the doctor, which are useful for anyone with or without a disability:

• You or the person accompanying you should give some thought in advance as to what you want to discuss with the doctor and what it is you want to achieve during the visit. Make note of the reason for your visit. This will make it easier for you to explain once you’re with the doctor.
• Write down all your questions or have your accompanying person do this for you so that it’s easier to remember these during the appointment.
• Test results, doctors’ letters, and other medical documents can be stored in the electronic patient record (ePA). This allows the patient’s doctor to access them directly.
• If you don’t want to save this information in the ePA, bring all necessary documentation with you (e.g., test results, doctors’ letters, lab results, certificate of vaccination, medication plan).

More information about preparing for a doctor’s appointment is provided in the article “How to prepare for your visit to the doctor”.

A network established for women and girls with a disability/chronic illness has published a brochure containing tips for visiting the gynecologist. The brochure is available in standard language and simple language versions (German only).

A stay in hospital is particularly stressful for most people. For people with a disability, it can be an even more difficult experience. In particular for those with an intellectual disability, the unfamiliar situation may be very challenging. They may develop anxiety or resist treatment. Proper preparation for planned hospital stays can help take the stress out of the situation. 

Before the hospital stay, there should be a joint meeting between the patient, their loved ones or caregivers, and the hospital staff responsible. This preparatory meeting will give everyone involved an opportunity to ask and answer questions and the patient and their loved ones will learn what to expect. The hospital staff can ask questions about the individual’s diet, medication, medical aids, or specific behaviors or needs they may have. To ensure that the hospital staff are well prepared for your stay, it is advisable to summarize all relevant information in writing and to bring this with you to the meeting. With a planned hospital stay, the patient’s family doctor should specify any special requirements in relation to their treatment in the referral letter. Ask your family doctor about this if necessary.

As preparation for an unplanned hospital stay, you can compile a folder with important information and documents (e.g., advance healthcare directive, doctors’ reports). This should always be up-to-date and kept ready to hand at home. The electronic patient record (ePA) is also useful in this context. You can use it to store all information about your health in digital format. Patients can also store their own information in the ePA, which may be useful for the doctors treating them.

A checklist for planning a stay in hospital is provided (from page 13) in the brochure about people with a disability in hospital published by the Bavarian state government (in German).

A list of what to pack for hospital stay in simple language is provided on the website of the rechts der Isar university hospital in Munich (in German). 

Can people with a disability bring an accompanying person to hospital?

People with a disability sometimes need the support of a trusted person when they have to visit hospital. In such cases, they can bring an accompanying person subject to certain conditions. The accompanying person is then admitted to hospital with the patient and can remain there for the duration of the patient’s stay. This is only permitted if necessary for medical reasons or due to the patient’s needs arising from their disability.

In general, an accompanying person is needed because of the patient’s disability if:

• the patient normally needs to be accompanied and supported by a trusted caregiver on a daily basis
• the patient only requires support in certain situations, e.g., due to the particular stress associated with a stay in hospital

An accompanying person may be necessary for medical reasons if:

• a patient with a disability refuses to stay in hospital without an accompanying person
• the patient can only follow the instructions of hospital staff with the assistance of an accompanying person
• the accompanying person needs to be involved in the treatment

Where possible, the patient’s doctor should specify in advance in the hospital referral letter that an accompanying person is medically necessary. The hospital must also be informed as soon as possible that an accompanying person is to be admitted with the patient. 

If the accompanying person suffers a loss of earnings due to the hospital stay, they can receive sickness benefit from the health insurance fund. However, this only applies if both the patient and the accompanying person have statutory health insurance and if the accompanying person is in receipt of integration assistance benefits. To receive sickness benefit in this case, the accompanying person must submit a claim to the statutory health insurance fund. The claim must be supported by official confirmation from the hospital that the joint admission was medically necessary.

The legal basis is defined in the Hospital Accompaniment Guideline (“Krankhausbegleitungs-Richtlinie”). More details are available from the National Association of Statutory Health Insurance Physicians (Kassenärztliche Bundesvereinigung, KBV).

How to prepare for discharge from the hospital

The patient’s discharge from hospital should also be planned in advance if possible. In some cases, the patient may require continued accommodation and care. Follow-up outpatient treatment must also be arranged.

A checklist for preparing for discharge from hospital is provided (from page 21) in the brochure about people with a disability in hospital published by the Bavarian state government (in German).

For people with an intellectual disability, it is particularly important for reliable information to be formulated in a way that is easily understood. Various websites now offer information about health conditions and other health-related topics in simple language: 

The website of the Special Olympics Deutschland e.V. association provides information about various health-related topics in simple language. This website also provides an overview of health services in simple language.

Health information in simple language is also available on the website of the charitable association Lebenshilfe and on the website of the Bavarian State Ministry of Health, Care and Prevention.

Complementary independent participation counseling (ergänzende unabhängige Teilhabeberatung) (EUTB) advises people with a disability or chronic illness on a wide range of issues. All sources of advice and support can be found using the search function on the EUTB website.

Advice on the topic of living with disability is also provided on the web portal of the Federal Ministry of Labor and Social Affairs (Bundesministerium für Arbeit und Soziales, BMAS). It also offers a telephone information service. 

In addition, the Federal Ministry of Labor and Social Affairs (BMAS) operates a sign language phone service for people who are deaf or hearing-impaired. It provides information about issues that fall within the remit of the Ministry, such as pensions, accident or unemployment insurance, minimum wage, and basic income support. 

The Federal Ministry of Health (Bundesministerium für Gesundheit, BMG) similarly has a sign language phone service. It provides answers to questions about health insurance and long-term care insurance and about preventive healthcare.

Advice and support are also available from the information centers of the charitable organizations Caritas, Diakonie, and Lebenshilfe.