Independent living in Flanders Belgium Leen Lankester Coordinator

Independent living in Flanders (Belgium) Leen Lankester, Coordinator Independent Living Centre Denderleeuw Alex Verheyden, Member of the management team ADO Icarus vzw June 8 th 2011, Bilbao

Table of contents 1. 2. 3. 4. Disability policy (in Flanders) Independent living: main components Independent living: ADO Icarus a) ADL-assistance b) Service users c) Call system d) ADL-assistants Synopsis

1. Disability policy in the federal state of Belgium

1. Disability policy: mainly a regional matter • The federal state: income-replacing benefits/allowance; • The Flemish community: subsidising and organising care • The Flemish region: housing; employment; … • The provincial and/or municipal level: transport costs; projects; …

1. The Flemish community: subsidising and organising various types of care Care in kind üResidential facilities • Nursing • Home for working people • Day centre • … üHome services • Integrated living • Independent living • Assisted living • … Cash payment üPersonal assistance Budget

2. Independent living: background Independent Living • Origin: Sweden • Emancipation movement (‘ 70 s-’ 80 s) • Inclusion • Autonomy • Physical assistance • Privacy • 1985: experimental independent living projects • 1991: legislation and subsidy • 2011: 25 independent living projects ADO Icarus vzw • 10 independent living projects • 230 ADL-assistants

2. Independent Living To live in an independent and autonomous way in their own home environment, people with disabilities need to have access to Ø Adapted housing Ø Home modifications and technical equipment Ø ADL-assistance (24 h) Ø Call system

2. Independent living Adapted housing Twelve to fifteen ADL-houses (ADL stands for ‘activities of the daily life’) are situated in a regular neighbourhood. The house are fully accessible and they are adapted for the use by people with severe physical disabilities.

2. Independent living Adapted housing • Social housing project • Builder: social housing developer • Maximum of 12 -15 adapted houses and a ADLcentre • Only 2 adapted houses next to each other • Radius of 200 meters • Regulation on surface, accessibility, equipment • Grant: 450. 000€ /project + 100. 000€/ADLcentre • Service users rent the houses • Income related rent • Rent contract linked to support contract

2. Independent living Equipment and modifications All ADL-houses are equipped with the most elementary and necessary appliances and adaptations. The Flemish Agency for People with Disabilities (VAPH) can finance the acquisition and installation of a large number of more specific and/or individualised appliances.

2. Independent living Equipment and modifications Modifications • NBN ISO/TR 9527 (design guidelines) • Adjustable kitchen sink • Adjustable toilet • Accessible electric switches • Wheelchair accessible shower • Widened doorways • . . . Equipment (standard): • Automatic door opener • Easy use lever taps • . . . Equipment (individual): • Hi-low bed • Hoist (patient lift) • . . .

2. Independent living ADL-assistance • 12 service users=10 fte ADL-assistants • No cost for the service user • Limit of 30 hours/week • Fragment of total care, next to: • Non-professional care (family, …) • Home nursing • Cleaning staff

2. Independent living: support Call-system The users can ask for assistance any time by means of a portable communication system. The communication system can be adapted to the needs of each individual user. The communication system that is developed by ADO Icarus uses mobile phone technology.

3. Independent living: ADO Icarus supports people with disabilities from 10 independent living centres that are situated in different regions in Flanders Lommel Dendermonde Menen Zolder Kortrijk Denderleeuw Diest Halle/Beersel Gingelom Hasselt

3. Independent Living: ADL-assistance • Definition: support in daily activities that users can not perform themselves or only partially due to physical disability. It does not replace aid from other organizations and can not be offered on appointment. • Tasks: to help users with • Eating and drinking, heating a meal, serving food, doing the dishes, . . . • Moving around the house, in and out of bed, wheelchair, car, bath, . . . • Personal hygiene and make up: mouth care, brushing hair, cutting nails, shaving, washing, (un)dressing, bathing, . . . • Little things like emptying the letterbox, inflating a tyre, preparing an activity, making up the bed, administrative tasks, . . . • Scope: • Users’ homes and immediate surroundings • (Para)medical, psychological or social help can only come from specialized service providers • House cleaning, ironing, preparing meals and transport fall out of scope

3. Independent Living: Service Users • As our customers, the service users are placed centrally within our organization. They decide autonomously when they use our services (24/7) and how they want to make use of it. At any time they can call for assistance through the communication system. • The users participate actively in the organization (e. g. interviews, evaluation of the assistants) and are represented in the governing board. • The governing board of the organization consists of 21 members, of which 14 have to be people with disabilities: • 7 users of the independent living centres • 7 external experts

3. Independent Living: Service Users (2) • Service users must comply with the following legal regulations: • Severe physical disability that demands a minimum of 7 hours and a maximum of 30 hours of assistance (estimated at intake) • Showing responsibility when requesting ADL-assistance • Registration with Flemish Agency for People with Disabilities (VAPH) before the age of 65 • Approval by the VAPH to use a centre for independent living • The service users are aged between 20 and 70 and can live independently, alone, with their family or partner. • The service users need to realize that they use a collective service, which sometimes can mean waiting times.

3. Independent Living: Assistants • Rules of conduct • Assistance is delivered on request of the users and according to their wishes • The user determines whether a request belongs to the activities of the daily life (ADL). • A request from the user can be refused in case: • Own safety or health is endangered • It clearly does not concern an activity of the daily life • Moral objections exist • In case the user and the assistant would disagree on the nature of the request, the responsible coordinator is contacted. • In case an assistant finds an activity too dangerous or too heavy to perform alone, a colleague can be called up to come and help. If the user would not allow this, the assistant may refuse further help. • Assistants can use (lifting) aids in mutual agreement with the user.

3. Independent Living: Assistants (2) • No specific educational level needed, training on the job. • Assistance is provided 24/7, all year long. Day shifts are organized between 6 am and 11 pm, nights shifts between 9 pm and 7 am. • Assistants are not allowed to perform any medical care, not even on request of a doctor or a nurse. • Values • Autonomy • Mutual respect • Privacy and discretion • Team spirit

3. Independent Living: Call System • Calls for assistance: all assistants on duty are informed about these calls and handle them as they come in. There are 4 types of calls: • Alarm: emergency in which the life of the user is in danger • Urgent: swift action from assistants is required, e. g. visit to the toilet • Short: only for small tasks that need prompt action, e. g. putting on a coat • Normal: all other calls • Calls are answered in chronological order, except for the first 3 types.

4. Wrap-up Retrospective: • Inclusion • Independence • High quality of life • Home support • … Challenges: • Complexity of the disability • Disintegration of informal care • Awareness of independence • Broadening the target group • Waiting lists • Cost efficiency • …