This is a long entry with no illustration. Please, bear with it and read it till the end. It is important for Anne-Fleur, for me, for us. This is taken from my blog:
No poppy today although this entry is once again related to the garden. Somewhat. Well. I shall try to make the issues clear, including the garden. If you understand, then, there is a chance the French administration may understand as well. And so, I shall use this entry as a basis for my correspondence with said administration.
Until her sixteenth year, Anne-Fleur was a minor dependent of her parents. When she was twelve, her father died and her mother received the full parental powers over her until her majority. Therefore, when she turned sixteen, Anne-Fleur was declared "incapable majeure" (incapable adult) and placed under the guardianship of the State. But the guardianship was delegated to her mother who remained de facto et de jure her guardian. She had all powers and duties of a parent plus one: all financial matter concerning Anne-Fleur should be endorsed by the Court in Périgueux.
Anne-Fleur was declared incapable adult after psychiatric and medical evaluation. One knows that Down Syndrome is having a third chromosome added to the twenty-first pair and that this chromosome never disappears. Anyway, the French laws, rules, and regulations ask that this evaluation, medical and psychiatric, to determine that one person is still suffering from Down Syndrome, happen regularly every seven years. Don't ask me why. Anne-Fleur was born with Down Syndrome. She lives with Down Syndrome. She will die with Down Syndrome. But she must pass through the evaluation every seven years.
Each time she has been declared or confirmed incapable adult, she must go through another commission that is at the level of the State and the département. This board and another medical doctor determine the degree of her incapacity. The more she is incapable and the less she has revenues, the more she will "benefit" from a monthly allowance. This allowance has been determined nowadays at the amount of 782€.
While Anne-Fleur was living with her mother, nothing from the allowance was spent. Her mother paid everything. It is very difficult to calculate how much each person living in the same house spends on electricity, telephone, television, food, etc. Usually these expenditures are made communally. Therefore her mother estimated that xx€ were spent on food, xx€ were spent on electricity, etc. And accounts were produced to the Court that had nothing to do with the everyday real life because the everyday real life does not fit in administrative boxes.
When Anne-Fleur's mother felt she was ageing, she asked the Court to give the effective guardianship to her elder daughter, Anne-Fleur's sister. Papers were endorsed, signed, duly registered, and Françoise became her sister's guardian. Nothing changed at the financial level.
When Francoise died, Anne-Fleur was now living with me. We went through the whole obstacle course of the medical and psychiatric evaluation. She was declared incapable adult once more but with high capacities. I was declared competent to take care of her but for the finances. More papers. Hearing of Anne-Fleur by the Court who asked her to sign a paper by which she recognised she was incapable (N.B. How can an incapable person validly recognise that she is incapable?) and that she accepted an appointed administrative guardian. Anne-Fleur did not understand a word of what was happening and told the Court it was stupid to spend a whole sheet of paper for three lines at the top: half a sheet would have been more reasonable.
Then, we went through the second obstacle course: that of the allowance. It was given: 782€ per month. The guardian decided that even as we had no other resources, Anne-Fleur would be allowed 220€ per fortnight. This is our sole "revenue".
But...But Anne-Fleur being handicapped could "benefit" from hours to help her "socialise" with a lady who would take her out for "socialisation" (the notion is kept vague but may cover taking her for a walk, going to the library, going to see a film, etc.). Anne-Fleur has got three hours of socialisation per week.
I asked about the use of the "socialisation" hours for cleaning and gardening. But strictly speaking, this is impossible because these hours must be devoted to Anne-Fleur exclusively.
However, if the cleaning, cooking, housekeeping, gardening (I mean keeping the environments of the house with cut grass, no more) are not done, the environment can be declared insalubrious and Anne-Fleur taken away from home.
And, letting alone the day-to-day life with 220€ per fortnight, here come the issues.
I drive. Fortunately, because we live in the countryside and we are two kilomètres away from the supermarket. The exhaust pipe is stalled and I cannot drive with it bumping under the car. I have signalled the fact to the financial administrator and asked for it to be mended. No answer. No use of the car. This happened six months ago. Six months of silence. The battery of the car is now discharged. More cost. Still silence.
As we need to eat and we need some other small things to live, the "socialisation" lady has become "the shopping lady". She drives Anne-Fleur and my shopping list supposedly during one hour on Tuesdays and two hours on Fridays (in fact, it is always less for evident reasons as she has to drive from house to house where she works and that takes a quarter of hour away from an hour) to the supermarket. When she is here. When she is not - at least once or twice per month - there is nobody and no way to make our shopping.
When I talked about a great spring house cleaning, there was a wholehearted yes by all instances.
Now comes the question: who is going to clean and who will pay?
As there has been three months that this issue is being discussed, I am beginning to tell the shopping lady that she will have to demean herself to cleaning lady and help me. She does not like this at all and finds excuses not to do it.
The most evident is that without her shopping, we shall not survive. And you remember that we cannot go shopping by ourselves because the car has been needing mending for six months.
So, we have: no money, no mending of the car, no shopping by ourselves, no help for cleaning.
As to cutting grass, there has been a clear "no" to it. We dare not open the french windows anymore and the paths and alleys are full of grass that goes knee high,but hours for cutting the grass would not be exclusively devoted to Anne-Fleur.
This is our daily life.
If you have come until then and understood that the French administration is full of paradoxes, please, click "I like" or, better, leave a comment. And I shall try once more to explain my issues of car, shopping, house and garden to said administration.
Powerful post. Can't answer as to French ways but here we have some good charities that would help as an advocate and for advice. All disabled people put up with this sh*t as we are not productive or important. So sorry for you all.ReplyDelete
Thank you Hermes.Delete
For example: The Citizens' Advice Bureau and the Women's Institute.
Can you tell about a good one in Wiltshire which would do exchange and maybe international experience?
Yes - charities and social justice organisations.
And I sort of can "answer to French ways" but I was still a minor while I was there.
782 * 6 [so far] = 4962 euros. Not to mention the overtime and double-time.
Yes - disability is a full-time business!
Especially the family/share house aspect.
Thank you Hermes and Adelaide. Thank you so much. Your answers come with concern, I mean real, true concern, and this is a relief and a comfort.Delete
I shall answer more fully later today but I can say that
- yes, disabled persons are neither productive nor good consumers so they are not important in our Western society where family bonds and, in France local and community links have been destroyed by "progress";
- we are Roman Catholics; when we were in Paris, we were helped by the parish and the parishioners, as friends or members of the community; in this rural part, parishes are geographically big and the number of RCs dwindling, therefore we have been slowly left aside; anyway, yesterday afternoon, I wrote to the local services for the ill and disabled of the bishopric, stating our situation and asking/begging/crying for help - spiritual AND material;
there are associations in France but mainly for disabled children and their parents; I have found nothing for adults being taken care of by siblings; people with DownS were dying younger and their life span has only recently increased; the solution, as far as I have seen, is that the ageing parents put them in specialised institutions or in families that are paid to take care of them; when the parents die, siblings left them where they are; it does nor seem very often that mentally handicapped adults stay at home; but I want Anne-Fleur to stay at home and she wants to stay as well; so, we may say that there is no adequacy between the existing rules and situations like ours.
Yes, in the last 10-15 years.Delete
There are also Circles of Friends and foster-type families.
Thank you for filling out more of the role of the Church and its hierarchy in Dordogne and the Village.
"No, there is no adequacy between the existing rules".
Six months without freedom of movement is a crisis - necessary and instrumental. How much longer do they expect you to survive like this?
The grass as it stands now is inaccessible to Anne-Fleur and a danger to anyone else who comes to the house. What if there were fire/flood/storms/other acts of God or human calamity?
[Has she ever walked outside barefoot in recent years?]
What is the average cost of a rented/hired car in your departement? And, yes, I know [or at least strongly suspect] that Uber; Lyft and similar services are illegal.
Are there autonomous cars which can be borrowed? Then the shopping lady can focus on socialisation. [and cleaning if she wants].
Seems like the administration thinks that even three hours of socialisation is a luxury.
Surely all they had to prove in the 1970s was that Anne-Fleur's care was much more expensive than the average French 16-year-old in her situation because of her incapacity.
There are public trustee firms and equity places.
The seven years are there to cover major medical breakthroughs - for good, for bad, for otherwise. So if Anne-Fleur had Alzheimer's too [which may happen in the next cycle - if it hasn't already] that would be covered.
[Other countries cover "with the expectation of being unable to work in the next two years"].
The things we dare not do in the house and outside of it!
And The Little Family has no access to alternative transport without putting themselves, others or property in danger?
"Anne-Fleur did not understand a word of what was happening and told the Court it was stupid to spend a whole sheet of paper for three lines at the top: half a sheet would have been more reasonable." I think I agree with her! She is obviously a good steward of her resources and that justifies the judgement of "high capacity" [is this only the last 7 years? or when was she "promoted"?]
[What can someone in the 'high capacity' category do that someone else might not be able to? Do they look at impairment tables and give points?]
Are there websites in easy and plain language with pictures? Any advocacy groups? What about neighbours/amenities people? Time and job banks?
Who are the Board people? People who know/knew Anne-Fleur from home; school; work; the law?
A good site: Deficience Intellectuelle which is based in Quebec.
I shall answer more fully this afternoon.Delete
- to repair a stalled exhaust pipe would cost less than 100€, and there is money for this. The financial administrator only has to give a green light
- when the car is repaired, The Little Family can do her own shopping and ask the "socialising" lady to go on to the cleaning; even more so if RC charities are alerted and willing to help (see my comment above)
- the same can deal with cutting the grass; or I am almost sure that some obscure French regulation may be found to insure the security of Anne-Fleur in her environment (house and garden).
It needs sufficient impetus to start the whole project. After writing to the rightful local people who deal with our case, I wrote this blog to appeal to try to find comfort and help ( I sometimes feel insane or a lunatic in front of such astounding silence and I wished to know if I am insane or if it is truly something wrong).
There are answers that show I am not making this up in my mind! This is comforting!!! These answers are an inspiration for new ideas.
The number of people looking at the blog(s), the tweets, the re-blogs, etc. may be useful in my further steps. I shall tell the local "powers" about the publicity received by the dysfunction of the situation, and send a petition (I don't know if this is the right English word) to higher levels up to the minister for disabled persons and the minister of justice (from whom depends the judge who gave the guardianship and administration to the present administrator), referring to the blog(s). If no answer is given, I may try the media.
The doctors (MDs) who make the psychiatric evaluations decide of the degree of capacity upon a talk with the disabled person. This talk lasts in between a quarter of hour and half an hour. They have reports from the family GP who has established the general condition of the patient. Otherwise, there has been a short talk with me and reports from social workers who have seen Anne-Fleur fleetingly, plus the request from the Court (all paperwork).
I told above about the difficulties to find groups who talk about adult handicapped persons at home with their families. They tend to be forgotten: they cost less than if they were in an institution or a paid family as their own family is not paid to take care of them. I devote my time and my life to caregiving, but I have no name for such "a job", no status, no allowance or payment. The allowance goes to the disabled person for the use of the disabled person, not for the carer (if there is such a name). And only part of it is given every fortnight to pay for the needs of the disabled person.
Thank you Camille.Delete
La Croix might write about it - they are the chief Catholic sheet in France - which do everything else - and they wrote about my Israeli friend Segev who has just turned 18.
Journal dimanche and Mediapart are the other two as well as a regional.
Thank you for the details of the talk and the GP. Not so unlike!
Maybe also in legal sheets/newspapers. There are lots of people who are active in prosecuting for their disabled clients and their families as well as for the larger will/probate/estate/trust business.
Silence does have a way of invalidating us, doesn't it?
Petition is exactly the right word - religiously and in an activist sense.
A one-pager is probably best. Helen Sanderson is good at making these.
Here are the newspapers in France: https://en.wikipedia.org/wiki/List_of_newspapers_in_France
Might want to try TV and radio too. Especially radio. There's the BBC World Service and I know France 1; 2; 3; 4 have great programmes.
I look forward to your full answer.
There WOULD be some OBSCURE regulation.
It's great to see that laicite has not killed the Church and its sons and daughters altogether!
There's magazines like Majellan which again is for families. It takes on siblings and adults too.
could they help you ?
Thank you. I shall look up each site carefully and tell you. But any crumb of information may help.Delete
I know at least two of these sites well, especially the Down Syndrome UK blog.Delete
Contact a Family is great for personal connections and lateral and vertical groups.
The Heart association is more recent.
This is a terrible situation, and it should never, never happen in a civilised country in 2016. I hope the French authorities take pity on you, and you get help soon for yourself and your family.ReplyDelete
Thank you for your wishes. When I read comments and see the number of viewers, I feel hope being born again! There MUST be a solution! France, its authorities, its citizens cannot allow other French people to remain in such difficult situations.Delete
N.B. You duplicated your comment. As the second one was exactly the same as this one, I took the liberty to delete it. I hope you will not mind.
Thank you again to have stopped by and taken the time to comment.
No, they can't. We can't.Delete
There are too many things that happen because France is a civilised country.
So cultured, so massaged [in terms of ego and material].
And this is where the diaspora - who have seen life in other countries - can and do help.
This comment has been removed by a blog administrator.ReplyDelete
I feel for you and your struggles. It is enough to be devoting yourself to the care of a disabled individual without all these other stresses. I hope the government can find the truly minimal funds you need in an account somewhere. In the US, there would likely be a church group that could help you with car repairs and maybe the lawn work and housekeeping: do you have anything like that in France, or is it all state support? I am not suggesting the state be relieved of the responsibility, just wondering what your short term options are.
thank you very much to have read and made a comment. There might be enough on Anne-Fleur's account to pay for the car repairs and to start the great house cleaning and garden cleaning. Once put back "in shape", that would become routine, which might be covered by routine funding.
As to community help, when we were in Paris we had lots of support from our parish and the parishioners / friends as well as from the priests. Here, a parish is geographically wide and big, priests are but few, and the number of RCs dwindling. Nevertheless, I wrote to the service in charge of the "pastorale" for the ill and disabled of the local bishopric in Périgueux. I stated our situation and asked, requested, shouted for help, both spiritual (without a car we cannot attend mass and other services) and material: there are RC charities and I hope they may have people who would be willing to help!
I also wrote to a RC organisation my family and then I were in contact with when we lived in Paris. It is the Office Chrétien des Personnes Handicapées (OCH), which deals with all aspects of the life of handicapped persons and their families. I am waiting for an answer. They give spiritual, material AND legal advice. But their offices are in Paris.
Maybe get the powers that be to start one in Dordogne.Delete
When I say that, "You are somebody".
just for interest
Thank you: I shall read it this afternoon. Anne-Fleur was worrying me with losing memory and vocabulary. I think it is stress mostly because it improves when we are together and quiet.Delete
I also saw the Green Tea story on Noah's Dad's blog.Delete
[it is one of the two "famous" blogs in the Down Syndrome community - Kelle Hampton's ENJOYING THE SMALL THINGS being the other].
And I know that the Little Family also enjoys tea of any sort.
Are you into macha? Because I think you deserve a great big cake and it may be the only green thing in the house for some time.
[Yes, I know, enhancing motivation by more expensive ingredients].
[Intermittent reinforcement and diminishing returns - I am not above behaviourism when it promotes a more humanistic environment or changes conditions].
What a depressing situation to be in! I am from the US and living in Belize for many years, so please excuse my ignorance if my suggestion is not an option for you: Are you able to set up a go fund me account that people from around the world could donate to, to help get your family back on track? I know that some European countries can use it. Hopefully, France is one of those. The beautiful thing about Go Fund Me is that complete strangers from around the world can and do often provide the help you need. Here is the link: https://www.gofundme.com/ Good luck to you!ReplyDelete
Well, this is an extraordinary news! I did not know this possibility existed and it seems to be available in France. I would rather let this to even more needy people but it is reassuring to know that it is there.ReplyDelete
Thank you very much indeed. You are most kind. :)
I wrote a letter to a Hungarian man who has a teenage sister with Down syndrome [Daniel Tilli and Zsofia who is 13 now] telling him about his crowdfunding possibilities.
The European Union strongly supports crowdfunding in central Europe.
And also have contact with business/commerce/service organisations like Rotary and the Lions Club.
Patreon would help you with your work if you wanted to make a regular/routine project as up above.
FundRazr is really good with connections online and in real life.
The Brits often use JustGiving for charitable causes.
In Australia there is Everyday Hero and GiveNow - the latter all the charities seem connected to. I gave to a Mission only last week.
In this connection I might mention the Guardian Social Network and there are lots of great third sector connections/relations.