How can we efficiently provide access to the services disabled people with support needs require to live independently? Do personal budgets hold the potential to be a gateway to the 18 Pillars of Independent Living? How do personal budget schemes need to be designed to be as effective as possible?
To provide answers to those questions, ENIL embarked on the process of producing a Roadmap on Independent Living, exploring the chances personal budgets provide and finding the determinants for maximum effectiveness.
With the support of our Independent Living Task Force, three sessions took place during which country examples were studied. The resulting insights were supplemented by a review of studies and reports.
Based on that 16 key questions around personal budgets were determined, forming a draft of a Roadmap for Independent Living Service. Key points of these results will be presented here.
On the 27 November 14:00 – 16:00, a consultation session for ENIL members will take place during which it will be possible to give feedback to the results. Based on the feedback, the final document will be prepared.
Upon registration, ENIL members will receive the draft document.
Personal budgets and Independent Living Services
Independent Living is usually defined as having full choice and control over one’s life and to be fully included in society. According to article 19 of the United Nations Convention on the Rights of Persons with Disabilities, Independent Living requires the freedom to chose the place on residence and access to services to meet support needs.
According to the evidence available, we are far from this objective.
According to a report by Eurofund, institutionalisation has increased in Europe by 29% in the last decade. Institutionalisation is one of the most severe forms of discrimination and violence. The Concluding Observations of the CRPD-Committee to Belgium found that confinement to institutions reduces life expectancy.
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The 2024 ENIL Independent Living Survey asked disabled people to rate the access to the services laid down in the 15 Pillars of Independent Living on a scale from 1, the right is not guaranteed at all, to 5, the right is fully guaranteed. Access to services were rated between 1 and 2 on average.
This lack of access to services like personal assistanca and peer support, means that milliones of disabled people live lifes in exclusion from society and under extreme stress from trying to compensate being left alone to cope with support needs. This stress can cause additional impairments. Because the lack of access to services results in people being unable to work, talents are lost, resulting in economic damage.
To design effective personal budget schemes, 16 questions and factors need to be addressed and taken into account.
What are personal budgets?
According to a definition proposed by Wouter Schepers, personal budgets (PBs) function according to the principle of demand driven support and are all about the disabled person taking control of the organisation of their own care and support.
Do you agree with this definition?
Which services should be purchasable?
The 18 Pillars of Independent Living define the services we need. At least seven are in theory purchasable through individual financial resources. Those are:
- Personal assistance
- Peer support
- Assistance at work: For example job coaches
- Technical aids and equipment
- Accessible and adapted housing
- Education and training
- Digital technology
Which services do you think should be purchasable?
Which are the arguments in favour?
According to the UN CRPD, disabled people are to have access to community support services. Personal budgets (PBs) have the potential to enable access to a broad range of services, including but not limited to personal assistance.
Recipients indicate needs for improvement but report high levels of satisfaction overall.
There is strong evidence showing, that PBs can be economically advantageous compared to traditional supply-driven policies.
What do you see as pro and contra arguments?
Which countries or regions have PB schemes?
According to our information not many countries have nationwide personal budget systems. Nationwide personal budget schemes have been introduced in Sweden in 1993, in the Netherlands in 1995, in Germany in 2001 and in Belgium (Vlaanderen) in 2017.
In Italy, Finland and Ireland small-scale pilot projects are being conducted.
Which PB-schemes are you aware off?
Which target groups should be included?
Some schemes allow access to all disabled people and even people with chronic illnesses. Some allow access to people under 18 or over 65 years of age and some only to adults.
Do you think there should be limits in access?
Which legal design?
In some countries we see that there are various types of PBs, established through different laws. Some schemes are established through a single law.
Which legal design do you think works better?
Centralisation or decentralisation?
Most PB schemes prefer a decentralised form of administration. While this form of administration can give applicants more power it also produces an uneven implementation.
Should PBs be administrated by a single authority or should the competences be divided?
How to ensure legal capacity?
Legal guardians must not be allowed to administrate PBs on a person’s behalf.
Should supporters providing aid under supported decision-making be allowed to advise the recipient?
Who is providing adequate financial resources?
Many PB schemes are under funded.
How much funding does your national or regional government allocate to PBs? Is it sufficient to match the demand?
How do calculate budgets?
Budgets need to be linked to real costs and based on the actual number of assistance hours required.
What are your thoughts on budget calculations?
Which role should family members play?
Some PB schemes allow recipients to pay family members to provide the support.
Should it be allowed to pay relatives to provide the support?
How to link PBs with deinstitutionalisation?
For no PB scheme we are aware off do we have evidence of a link to a deinstitutionalisation strategy.
Are you aware of the PB-scheme that is linked to a DI strategy?
What is a fair application procedure?
In many places application procedures can be lenghty.
How should a proportionate procedure look like?
Support in managing the PB
Most PB schemes allow for organisations to support recipients.
Which support do recipients need to manage their PB?
Which mode of payment is better?
PBs are provided in the form of direct payments or vouchers, through social insurance banks or local authorities.
How should PBs be paid out?
The full draft Roadmap is available to ENIL members upon registration to the consultation session.
You can register here.
