The personal budget – more self-determination for people with disabilities

People who are currently dealing with or at risk of disability often need support for everyday life and working life. This support may take the form of personal assistants or medical/assistive aids, for example. People with a disability are legally entitled to these forms of support.

One way for them to access supports is to be provided directly with the necessary non-cash (also known as in-kind) benefits and services directly. For example, if someone needs a personal assistant, this support can be put in place directly by a funding agency (“Leistungsträger”). In this case, the individual doesn’t need to worry about organizing or paying for a personal assistant. However, they may also have limited influence over who will be providing the assistance and the hours during which they will be available to them. 

The personal budget enables more independent decision-making. With this approach, individuals receive a fixed sum of money instead of non-cash benefits or services. They can then use this money to organize and pay for any assistive/medical aids, support or other services they need. In some individual cases, vouchers may be provided instead of a monetary amount, and these can then be used to cover the cost of certain care services, for example.

In this way, the personal budget is an alternative form of benefit rather than a supplementary benefit. It enables people with a disability to choose whether they would prefer to receive non-cash benefits and direct services or a lump sum of money with which to organize their supports themselves. It’s also possible to apply for a personal budget to cover just some of the services and supports needed. The rest are then provided directly as a non-cash benefit or service. For example, you could organize and pay for a personal assistant for your free time using the personal budget but have other important supports such as physiotherapy organized and paid for on your behalf by funding agencies such as your health insurance fund.

The personal budget gives people with a disability more freedom to shape their own lives. For example, it allows them to decide who will provide them with support in which areas of life. They can appoint their own personal assistants or even employ them in the “employer model”. They can also choose and pay for their own medical or assistive aids using the personal budget.

However, the personal budget requires more independent organization and responsibility. For example, more time needs to be devoted to organization and expert knowledge needs to be taken on board in decision-making. It’s also important to keep a close eye on one’s financial situation. Good financial planning and budgeting are needed to ensure that the personal budget is sufficient to cover the entire approval period. If you decide to avail of the personal budget, you will need to submit an application. 

Anyone with a disability is entitled to a personal budget. The severity of the disability is irrelevant. The personal budget can also be applied for by people who do not currently have a disability but who are at risk of disability. This may apply, for example, to people who have had an accident or who have long-term illnesses. Various indicators serve to determine whether a person is at risk of disability. For example, important considerations are how an illness has progressed to date and a medical assessment of how it is likely to progress in the future.

Some people are unable to manage money for themselves as a result of their disability. Despite this, they are still entitled to the personal budget. In such cases, their caregiver, for example, can help them submit an application and manage the budget. Parents or guardians can apply for a personal budget on behalf of children who have a disability. 

The personal budget can be used to pay for all services and supports that enable participation (“Leistungen zur Teilhabe”). Services and supports to enable participation seek to eliminate or minimize disadvantages due to disabilities. In this way, they aim to ensure that people with a disability can fully participate in society to the greatest extent possible. Services and supports to enable participation incorporate various types of supports and aids. They also include medical benefits to alleviate or prevent disabilities.

Examples of services and supports to enable participation are listed below:

• Medical rehabilitation benefits
• Benefits to enable participation in working life
• Benefits to enable participation in community life
• Benefits to enable participation in education

The personal budget could be used, for example, by people with a disability for the purpose of moving out of their parents’ home or moving from a care facility into an independent living arrangement such as supported living.

It could also be used, for example, to pay for a personal assistant for work or leisure time or for a transport service to get to work. A person with a disability can also use the personal budget to hire a personal assistant in an employer-employee relationship. With the employer model, the assistant’s working hours can be arranged more flexibly so that the person gets the assistance that they actually need.

If an individual wants to complete their schooling, the personal budget can be used to fund private tuition. This type of tuition is considered a support to enable participation in education.

Funding agencies (“Leistungsträger”) are responsible for paying the personal budget. The funding agency responsible in each individual case depends on which services and supports are required and on the reason for the disability.

The following funding agencies may be involved in paying for an individual’s personal budget:

• health insurance funds
• long-term care insurance funds
• pension insurance funding agencies
• accident insurance funding agencies
• youth welfare funding agencies
• social welfare funding agencies
• Integration Offices
• the Federal Employment Agency (Bundesagentur für Arbeit)
• funding agencies for old-age insurance for farmers
• funding agencies for war victims’ compensation and assistance

If various benefits from different funding agencies are required, this is known as an “agency-independent budget”. In such instances, each of the funding agencies involved contributes a portion of the payment. However, one funding agency assumes the main responsibility. It plans out all necessary steps, agrees these with the other funding agencies, and is responsible for their implementation. It also acts as the point of contact for all questions individuals may have in relation to their personal budget.

You can determine which funding agency is responsible in your case by using the rehab responsibility navigator provided by the Federal Association for Rehabilitation (Bundesarbeitsgemeinschaft Rehabilitation – BAR). 

You must submit an application in order to receive the personal budget. You can do so at a contact point for rehabilitation and participation, for example. These contact points can be found in every administrative district and every major city.

A list of all contact points with their contact details is provided on the online directory of contact points for rehabilitation and participation.

At these contact points, you can discuss with staff the requirements you have in relation to a personal budget. The staff will then forward your application to the correct funding agency. Alternatively, you can apply directly to the relevant funding agency yourself. If you apply to the wrong funding agency, that agency is obliged to forward your application on to the correct agency. 

If you are in need of services and supports from different areas, more than one funding agency may be involved in paying for your personal budget.

Even if this is the case, you only need to submit one single application to one of the relevant funding agencies or to a contact point. The funding agency that receives your application then remains the main funding agency responsible for your case or transfers this responsibility to another funding agency.

What happens after I submit my application?

If you have not previously been receiving any non-cash benefits and services to enable participation, you must firstly discuss your personal needs with the relevant funding agency. The discussions held are referred to as budget conferences or as the needs identification process. The objective is to precisely identify your specific needs. The needs identified in this process determine the amount of personal budget that will be allocated to you. You can have someone you trust accompany you to these meetings. 

It’s also useful to prepare well in advance for these discussions with the funding agency. Some useful tips are provided below:

• Make regular notes about what types of support you need, how often, and for how long.
• Find out, in advance, the standard costs of the services and supports you need in your area. 
• If you want to employ a personal assistant yourself, note that you also need to take account of costs for social security, days of absence and vacation days for employees in your personal budget.

If you are already in receipt of non-cash benefits and services to enable participation and your needs have not changed, there is no need for your needs to be identified again for your personal budget application. Instead, you can ask the funding agency, in advance, to inform you of the cost of the non-cash benefits you have received to date. This will give an idea of the amount of personal budget you can expect to receive. 

Once your needs have been identified, all involved can agree on the amount of personal budget you require. Your planned use of the personal budget will also be discussed. These goals are specified in a goal agreement. The goal agreement also states whether and how you are to provide documentation of how the personal budget is used. The ultimate aim of the personal budget is always to reinforce the self-determination and personal responsibility of people with a disability. This must also be considered in the goal agreement.

If, for example, the funding agency specifies in the goal agreement that extensive documentation must be provided in relation to the price of a service or support, this may be in conflict with the underlying objective. Where documentation is required, it should refer to the support or service itself rather than the cost. The goal agreement usually also specifies rules governing the quality of services and supports to be provided. It is also important to ensure that the quality of the service or support is determined on the basis of the goals defined for the personal budget. Your personal satisfaction with the service/support provided is of the utmost importance. 

In some cases, the entire amount allocated as a personal budget may not be used over the course of one year. It is therefore important to specify in the goal agreement what exactly is to be done with money that has not been spent. For example, money that is allocated to care during leisure time could be carried over into the following year and used for a vacation.

What happens after I receive a decision?

After the application process is complete, you will receive a decision. This decision specifies whether your application was approved and how much your personal budget payment will amount to.

If the budget is not approved or if it is not sufficient to cover the support you need, you can submit an appeal of the decision to the main funding agency responsible for your case. If your renewed appeal fails to be approved, you can lodge an objection.

Your needs are usually re-assessed every two years to see if anything has changed. If so, the amount of your personal budget and your goal agreement may be adjusted. After the initial approval of your application, the period until the next review of your circumstances is usually shorter, e.g., one year. This enables early detection of how well you are managing to meet your needs with your personal budget. The goal agreement is then updated or adjusted based on changed requirements.

The amount received depends on the individual’s needs. People’s individual needs differ depending on their personal circumstances and the nature of their disability. Your needs are identified in discussion with the funding agency. You can also choose to include someone you trust in this discussion. A decision is then made, based on your needs, as to how much you will receive as a personal budget. 

If you are already in receipt of non-cash benefits and services, your needs will have been identified previously. In this case, the amount of your personal budget can be agreed upon immediately. Note, however, that the personal budget cannot exceed the value of the benefits you are currently receiving. If your needs change and the payment is no longer sufficient, you can apply to have your personal budget increased.

Are income and assets taken into account for the personal budget?

Income and assets may or may not be taken into account, depending on how the services and supports to enable participation are to be funded. It doesn’t matter whether you choose to receive benefits in the form of a personal budget or in the form of a non-cash benefit or service.

There are two ways in which benefits to enable participation can be funded:

The first option is for them to be funded by insurance providers, such as pension insurance funds or accident insurance funds. In this case, income and assets are not considered. However, if therapeutic services are needed, co-payments may have to be made by the individual.

The second option is for benefits to enable participation to be treated as social security benefits funded by tax revenue. This applies to help with care costs (“Hilfe zur Pflege”), for example. Income and assets are taken into account for these. The same thresholds for income and assets apply as in the case of social welfare.

How is the personal budget paid?

The personal budget is usually transferred into your own account at the start of each month. This is important, as it means recipients are not required to pay up front for services and supports. The frequency of payments is decided upon in discussion with the relevant funding agency. Depending on your individual requirements, the entire amount may also be transferred at once.

In certain cases, the personal budget is provided in the form of vouchers rather than a sum of money – these can then be used for non-cash care benefits. Vouchers for non-cash care benefits can only be used to pay for care services or individual caregivers approved by the long-term care insurance fund.

You can cancel the goal agreement at any time with immediate effect if you have an important reason to do so. A cancellation must be made in writing. Important reasons for cancellation include a change in your personal circumstances – for example, if a family carer is no longer available to support you. You can also cancel with immediate effect if you are finding it too challenging to manage the budget yourself.

Funding agencies also have the right to cancel the agreement. They can cancel with immediate effect if the individual fails to comply with the goal agreement. This can happen, for example, if the money is used to pay for something other than what was agreed.
 
It is also possible to allow the personal budget to expire. This happens if a new application for a personal budget is not submitted once the approval period ends. The personal budget is also canceled if the goals defined in the goal agreement are not met. For example, the individual may not have achieved the goal of re-integration into working life.

Detailed information about the personal budget is provided on the website of the Federal Ministry for Labor and Social Affairs (Bundesministerium für Arbeit und Soziales).

The public hotline operated by the Federal Ministry for Labor and Social Affairs also provides advice in relation to the personal budget. 

Information, real-life stories and advice, in particular relating to personal assistants, are also available from the self-help organization ForseA e.V. – Forum for self-determined assistance for people with disabilities (Forum selbstbestimmter Assistenz behinderter Menschen).

Centers offering complementary independent participation counseling (Ergänzende unabhängige Teilhabeberatung – EUTB) can provide advice and assistance with submitting an application. The advice is free of charge.

The Self-Determined Life in Germany Advocacy Group (Interessenvertretung Selbstbestimmt Leben in Deutschland e.V.) also operates a hotline. Dial 030 - 235 935 190 for information about the personal budget. Alternatively, send an e-mail asking for advice to: persoenliches.budget@isl-ev.de 

On the website of the Self-Determined Life in Germany Advocacy Group, you can download a brochure containing tips and examples (in German).

Many useful tips are also provided in the brochure “Das Persönliche Budget für Menschen mit hohem Unterstützungsbedarf” (“The personal budget for people with high support needs”) published by the German Parity Welfare Association (Paritätische Gesamtverband) – currently only available in German.