And so are we.
The system here wants people to get an indication for living in a protected living situation.
As there are different living situations there's a mass of indications, depending on needs, intelligence and abilities.
Living can be done ofcourse in an institution, but outside the institutions there's quite some choice.
One of my sons went to a trainingshouse with 24/7 assistance available in the house (because people with physical disabilities also lived there) and now lives with a few guys in a house with 4 appartments and minimal assistance (visits to them and they can be called all the time).
The other went from his own appartment with assistance available all hours and a few hours of meetings a week to his own home with a few hours assistance for a year and then he'll be on his own.
The levels of social life (eating together or living in your own appartment and cooking yourself) and levels of availability of assistance (in the house all the time to out of the house to be called in) and amount of hours of personal assistance (meetings to discuss daily issues and individual development) Are reflected in the indications.
ZZP 1 is the lowest level of assistance.
ZZP 3 is the highest level of living outside an institution with full time assistance available
Higher ZZP indicates more special care in a institution.
And here politics comes in with changes that affect thousands of young and old people.
My speciality is young people, but most what goes for the young also goes for the old.
To create the cut backs they want on people with special needs they have decided:
- People who live at home with less than 10 hours a week won't get help anymore.
- ZZP 1 to 3 for people with psychological and/or psychiatric needs will mean that they won't be able to live in a special house, but have to stay home and they'll get help at home. If that's not possible they have to go to an institution.
Which is ridiculous!
Someone will be paid for what I'm doing and have done for the past 26 years.
How can my son gain any independence when he's here at home?
He has to be confronted with the reality of waking up in his own room/house. He has to be responsible for buying his own food.
We don't have the room for soneone to be all independent.
And we sure don't have the room for a stranger to be in the house to order him around or to discuss every single action.
I would love to give these tasks to someone else, but not when that someone else comes here in the house and sits beside me earning her money while I have done exactly the same and got not even a small pension!
Other consequences of the political decisions are also frightening.
People who live in houses with assistance will have to pay for their own rent.
Now they get benefits and part of there money goes to the rent. But the rent is low because it's part of psychiatric care.
When they have to get on the normal housing market my sons won't be able to make it. As simple as that.
Does that mean they need to come and live here at home again?
That's complately impossible.
Our house is far too small for 8 grown ups.
Right now I'm using the skills I've developed as an autism ambassador and advocate to address the issue.
Some politicians have become a bit aware of what's going on behind their paperwork.
But those who need to know have closed their minds.
With so many on the spectrum and with ADHD we could start our own party....