Special care centre brightens lives of children and their families

Summary

De Eglantier is both a day centre and hotel for youngsters with severe disabilities, taking some of the pressure off parents and putting a smile on kids’ faces

A legacy of care

At the end of the 1970s, a parent of a child with multiple severe disabilities put the foundations in place for Flanders’ first day care centre for such youngsters. It was to be a place where they would receive individual care in a homely environment adjusted to their needs.

Today, De Eglantier also offers a short-term “hotel” service for children, so parents can have some much-needed rest at the weekend.

There are currently 26 young people being cared for at De Eglantier, in two renovated houses in the rural Flemish Brabant town of Leefdaal. They can come to the centre until they are 25.

All of them have both physical and mental disabilities, and none have mental capacities beyond the age of a one-year-old. So, among other restrictions, they cannot speak.

It’s almost impossible for children with such conditions to function in Flanders’ special education system (BuSO). But thanks to the Eglantier team, they get the right care at a home away from home every weekday. In rare cases, youngsters make so much progress at the centre that they can make the transition to a BuSO school.

Home from home

The Eglantier story started in the late 1970s, when Johan Nootens of Tervuren was searching for proper care for his daughter Floortje. “She suffered from the rare Cockayne syndrome,” he says, “which slows growth and causes abnormal sensitivity to sunlight and premature aging. We didn’t want residential care, so we looked for good alternatives. But we couldn’t find any.”

So Nootens decided to create that alternative with other parents in a similar situation. With the help of local politicians and other supporters, they turned a villa into the first small-scale Flemish day care centre for children with such severe disabilities. 

We didn’t want residential care, so we looked for good alternatives. But we couldn’t find any

- Eglantier founder Johan Nootens

Floortje died when she was six, but her legacy lives on in De Eglantier, which has since been modernised and expanded. “Youngsters are divided into groups of five – and one of six – according to their needs,” explains De Eglantier director Ann Debontridder. “Two educators are responsible for each group. Through a variety of activities, we stimulate their development as much as possible.”

Verbal communication may be impossible, but the staff at De Eglantier have various ways of interacting with the youngsters, including playing with water, giving massages, singing, dancing and playing simple games. Both of the centre’s houses, across the street from each other, have large gardens in which the children can play.

Thanks to a collaboration with Tervuren non-profit The Healing Horse, the children can take part in hippotherapy sessions, meaning they get proper assistance to ride a horse. A speech therapist helps them develop their non-verbal communication, such as by teaching them the skills to point to something they want.

Both houses also have a snoezel room, a calming space that allows a person with mental disabilities to relax and explore their senses.

A world of difference

For families like those of Colm O’Brien, an Irishman who moved to Brussels in 1991, De Eglantier made a world of difference. One of his sons, Jake, was born with cerebral palsy, which left him with a severe mental disability and incapable of almost any voluntary movement. After staying in various Brussels centres, Jake got a place at De Eglantier about three years ago, where he received care until he passed away this summer at the age of 15.

“When we got a place at De Eglantier, for the first time we were 100% confident that Jake would be cared for in an absolutely loving way for the whole day,” says O’Brien. “Jake generally smiled when he arrived at De Eglantier in the mornings, which had never happened at the previous centres.”

He describes how the staff paid attention to all the details that might improve the children’s lives. “When they heard we’d bought a waterbed for Jake at his previous centre because he loved the movement of water, they went to a lot of trouble to get a similar bed.”

The opening of the Floortje Care Hotel – named after the daughter of the founder – at the end of 2014 further improved the quality of life families such as the O’Briens. For 10 weekends and 10 Saturdays each year, the Care Hotel hosts five youngsters, which gives their families some time to rest and regroup.

Each child can stay in the Care Hotel for up to three weekends and three Saturdays a year. The Care Hotel consists of one double and three single rooms for children and one for the two educators taking care of them all.

Running for Jake

The free time provided by Jake’s stays at the Care Hotel was very important for the O’Briens. “A relaxing weekend may seem like a small thing, but it was an incredible gift for us,” Jake’s father says. “Never in the years before had we had the confidence that Jake would be happy somewhere else if we took time for ourselves.”

Taking care of youngsters with such severe disabilities every day is both physically and mentally tough, he explains, “even when they are so brave and happy like Jake was. And during the night you have to be alert for possible problems, so you can never really sleep deeply”.

A relaxing weekend may seem like a small thing, but it was an incredible gift for us

- Colm O’Brien

As the O’Briens don’t have much family in Belgium, it was difficult to ask others to regularly take over Jake’s care. “But in general, it’s difficult for families in this situation to rely on people in their personal environment,” Debontridder explains. “These youngsters need such specific and complicated support that this is a problem, especially as they grow older.”

To support De Eglantier, O’Brien set up the Team Jake Run for Charity fundraiser. Seven teams of friends and family of the O’Briens will participate in the Ekiden Relay marathon in Brussels on 15 October to raise money for De Eglantier. Next year, O’Brien plans to open it up to anyone interested in supporting the cause.

This extra support is needed because the government subsidies that De Eglantier receives, amounting to about €1 million a year, are not enough to cover all the costs. “We only receive subsidies for 20 children, but we have taken on board six more who really needed our help,” says Debontridder. And the school received no subsidies for renovating the second house.

The centre relies on the help of volunteers, schools, clubs, companies, hospitals, donations and fundraising events like an annual art sale. The parents also contribute, paying about €13 a day.

Funding issues

According to Debontridder, the government doesn’t sufficiently take into account the needs of De Eglantier’s target group in their plans for the care sector, drawn up in the Perspectief 2020 concept.

“I feel the government puts too much focus on how home care and the people around somebody with a disability can help,” she says. “In our cases, friends and family can’t help enough, and home carers aren’t allowed to give medication or administer nutrition by catheter.”

She also points to the long waiting lists for nursing homes, where the youngsters get a place when they turn 25.

The Flemish Agency for People with a Disability (VAPH) points out that the government subsidises about 500 places in centres providing care to minors who are not able to attend special education because of their disabilities. “We already invest strongly in these centres and provide the largest part of the total funding that De Eglantier receives,” it says.

VAPH confirms that the focus of Perspectief 2020 is on help from a network of family, but emphasises the intention to provide extra support to this network, to further facilitate care at home.

It also believes the children’s situation will improve thanks to the introduction of the Persoonsvolgend Budget, with which the government will provide subsidies to people with disabilities directly, and not to the centres providing care.

People with a disability and their guardians will be able to receive the budget in the form of cash to be spent on assistance, vouchers to pay a centre, or a combination of the two. It will be introduced for adults next year and for minors in 2018.

Photo: A caregiver and child at De Eglantier
© Dieter Telemans