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Personal Assistant budget

“I don’t wish you a life without worries but I do wish you a life that is worth living” 
W. is a teacher and a mother of 2 kids. . Her son M is 13 years old and is severely disabled due to a bacterial meningitis caused by a hospital bacteria at his birth.
Thanks to the personal assistant budget, the family has managed to establish a rather normal life, as W. declared. M gets to enjoy a family life but also a life in the community. He attends school, both a regular and special needs education school, and participates in extra-curricular activities.

 


 

Support received
 
The Flemish system of personal assistant budget enables persons with disabilities to organise the support they need by themselves. With the budget, they employ professionals to support them with all kind of daily activities such as preparing meals, nourishing, transport, emotional support, etc.
 

 

Positive effect
 
The Personal Assistant Budget enables the perpetuation of a family life. “With the budget, M can live at home and has the opportunity to grow close to his family. He and his little brother are very close. They understand each other and his brother is like his voice when I am not around.” W was also able to keep working as a teacher thanks to the support.         

     

A regular day
 
In the morning, an assistant comes by to help M getting ready to go to school. She drops him off and picks him up after classes and accompanies him to physiotherapy sessions. Later, back at home, she helps him with his homework. “Our main assistant has introduced new symbols in his speech computer so he can communicate better with other people.” 
An assistant helps him at school as well for the meals, nursing, etc. so he can follow the lessons. During the weekend and the holidays, the family relies on assistants to help M to go out to the playground, to the seaside or any other leisure activity.

     

M attends a regular school part-time. An assistant accompanies him. “He loves to listen to other kids stories and on the playground he feels like one of them even if he is in his wheelchair and he cannot speak.” He also learns a lot of new vocabulary while being surrounded by children. It is enriching for all the kids to attend an inclusive school and it is a real advantage for the society.
M also participates during the weekend to an inclusive youth movement where activities are organised with kids.
The budget has enabled a true integration in the society for M and this will help him to live independently in the future as well.

 

The struggles
 
The budget covers a limited amount of assistance. Therefore, there remain gaps period during which W is alone to support her child such as during the night, which can be challenging at times.
Another disadvantage is the administrative work that comes with the service. The user has to manage its own budget and employ the assistants. This implies selecting an appropriate support person and conclude a contract with them. “It can be demanding to find a suitable assistant who understands and gets along with M”.

    
     
 

The Parent’s role

W agrees that parents are not professionals but this doesn’t mean that they don’t have the skills to support their children. They may lack certain competences but they retain one special ability: intuition. “As a parent I may not have the knowledge of a professional but I have always been eager to learn on how to help my son. I now have a lot of experience; I know how to pick him up, to lay him down, etc.”
When the special school decided to make M wear diapers during the nap, W opposed that decision. Her son succeeded to sleep without needing one. This made a big difference for him in his daily life.

The future

  • Hopefully, the waiting list for receiving the personal assistance budget will disappear and every person in need will be able to access this support scheme.
  • Society has to evolve in a lot of ways. Buildings must be made accessible (availability of ramps, light switches should be reachable by wheelchair users, doors should not be made too heavy), public transport, walking paths, etc.
  • Invest in trainings for teachers and parents. Experienced therapists should share their knowledge with all persons involved in the life of the person with a disability
  • W dreams of a European Training centre in which people of all disciplines can follow courses. The centre could provide information and also develop new innovation to facilitate the life of people with disabilities. The centre could also be a meeting place.
  • For her son, W imagines him living in a shared home with a couple of friends and with the help of an assistant to support him.

 

Highlight: The personal assistant budget respects the freedom of choice of the users and enables the person to live in the community and not in an institution.