Independent living with a disability thanks to work of Ghent non-profit

Summary

As the government of Flanders changes how it allocates funding to the disabled, one non-profit has won plaudits and a new prize for the way it helps people become self-reliant

Independence days

Last month, Onafhankelijk Leven was the first winner of the new Care Story of the Year prize. These are interesting times for the non-profit organisation, which helps people with a disability to live by themselves, as the Flemish government is changing the way it allocates disability funding.

This is the first time Red Cross Flanders has handed out the prize, which rewards the most inspiring project in the Flemish care and welfare sector. The jury was impressed with Onafhankelijk Leven’s development into a professional organisation that always focuses on its clients’ demands and needs.

“We saw strong creativity and a constant search for innovation,” said jury president Professor Walter Sermeus of the University of Leuven. The jury was also impressed that half of the organisation’s team consists of people with a disability or parents of a child with a disability.

The Onafhankelijk Leven (Independent Living) story started about 30 years ago, when the organisation was founded by Fleming Jan-Jan Sabbe. Sabbe had ended up in a wheelchair after he fell from a ladder while working in a tree.

Inspired by Scandinavian initiatives, he started to fight for more opportunities in Flanders for people with disabilities to take their lives in their own hands, with the provision of assistance.

Daily help

Until 2000, the government of Flanders only provided subsidies directly to organisations that helped people with disabilities, such as residential institutions. But at the start of the new millennium, Onafhankelijk Leven achieved its main goal: the launch of the Personal Assistance Budget (PAB).

With this allowance, funded by the Flemish Agency for People with a Disability (VAPH), individuals could hire an assistant to help them in their daily lives.

While only 62 people received a PAB when the system began, this has now increased to about 2,500 people. Onafhankelijk Leven mainly helps with administrative matters, provides advice via a free hotline and offers paid coaching services to help people take the first steps towards a more independent life.

It also trains ambassadors: people with a disability who give presentations on independent living in schools and other institutions.

One of the first people with a mental disability to benefit from the system was Dominiek Porreye. He is now closely involved in Onafhankelijk Leven and lives independently in the Sint-Amandsberg district of Ghent, in the Groot Begijnhof – the former begijnhof where Onafhankelijk Leven is also based.

I couldn’t even decide for myself what to eat, what programme to watch on television or when to go to bed

- Dominiek Porreye

For the first 39 years of his life, Porreye (pictured above, left) lived in various institutions in West Flanders. He never had a real relationship with his parents, who didn’t want to take care of him. As he grew older, institutional life became suffocating.

“The worst thing was that I needed to ask permission to do anything, and all my daily activities were organised for me without me having any input,” says Porreye, who’s now 52. “I couldn’t even choose what to eat, what programme to watch on television or when to go to bed.”

The work he had to do, in a sheltered workplace, was also monotonous: counting the number of screws needed to put furniture together, for example. “I tried to run away from the institution several times,” he says.

Making contact with Sabbe was the spur for Porreye to apply for a PAB. “For me, it meant I could finally experience freedom,” he says. His assistants help him with practical household chores – like cooking and doing the laundry – as well as with social and creative activities.

Porreye uses his freedom to develop his artistic skills: he’s made an amateur feature film and written his life story as a book, and, through a professor friend, he also gives guest lectures at Ghent University.

Shifting focus

“With the help of assistants, many young people with a disability can function perfectly in regular education and later hold down a regular job,” says Cor Van Damme, director of service provision at Onafhankelijk Leven, who himself uses a wheelchair because of a muscle disease. “While the government used to focus too much on care, it is now gradually shifting towards providing support.”

People in Flanders with a disability can receive a PAB of between €10,000 and €45,000 annually, depending on the amount of assistance they need. They can hire assistants themselves, through an application process or by asking family members or friends. Assistants don’t need to have a special diploma or training.

With this support, I can live a very normal life without over-burdening my girlfriend, family or friends

- Cor Van Damme

However, there are still about 35,000 people living in institutions in Flanders, according to Van Damme. “For many of them, care at an institution is the best solution,” he says. “But about 20% of people in institutions could live independently perfectly well, given the right assistance.”

A big problem in Flanders, according to Onafhankelijk Leven, is the long waiting list for PABs, caused by a budget shortage at the VAPH. Priority goes to people whose needs are most urgent and who don’t have a wide network of family and friends.

Van Damme himself had to wait four years to receive his allowance, and he now lives independently with his partner. “With this support, I can live a very normal life without over-burdening my girlfriend, family or friends with demands for help,” he says.

The right option

While the VAPH budget will expand soon, Van Damme feels it won’t be enough to meet the current need. However, he is glad the Flemish government is improving how the budget is distributed. At the beginning of 2017, the PAB will be replaced by the Persoonsvolgend Budget (PVB).

The big change is that anybody with a disability – including those who live in institutions – will be able to hire assistants. Institutions will no longer receive subsidies and will instead be paid by the clients – people who have been granted a PVB. 

Many parents are scared of what will happen to their children after they’re gone

- Cor Van Damme

People with a disability and their guardians will be able to choose to receive their PVB in the form of cash to be spent on assistance, vouchers to pay an institution or a combination of the two. “People can decide to live in an institution but pay for assistance to leave for trips or visits, for example,” Van Damme explains. “We will show people the different options and help them find the solution that best suits their needs.”

He expects, though, that some institution directors will try to convince people to stay with them. “Certain directors will try to keep their clients, so their budget isn’t cut.”

Another challenge will be to inform the parents of people with a disability. “Many of them are scared of what will happen to their children after they’re gone and prefer them to be in an institution, where they can stay for the rest of their lives,” says Van Damme. “It’s up to us to show them there is another way.”

European frontrunner

To help people with a disability who are not yet eligible for a PVB, the government is also introducing the Basic Support Budget (Bob). This is a monthly allowance of €300 that can be used for any kind of expense and cannot be combined with a PVB.

In September, about 6,200 adults will receive a Bob, with priority given to those who have been on VAPH’s waiting list for more than a year. Next year, it will also become available to about 16,000 minors.

Onafhankelijk Leven, which is 25% subsidised by the government of Flanders and for the rest depends on fundraising, is relatively happy with the new system, and with the work of welfare minister Jo Vandeurzen in general.

“Flanders is becoming a frontrunner in Western Europe when it comes to independent living,” says Van Damme. “We still think the VAPH budget is insufficient, but we’re satisfied that it hasn’t been cut in these difficult economic times.”