Would you, please, give some help to The Little Family only by reading this?

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: 

https://lightsandshadesblog.wordpress.com/

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.

Thank you!

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22 thoughts on “Would you, please, give some help to The Little Family only by reading this?

  1. What a dreadful situation and my heart goes out to you both. How sad that the authorities seem to have no grasp of your real, day-to-day life. The shopping and socialising lady must have a heart of stone not to help a little more. but perhaps her circumstances prevent her in some way. It appears you are in a very rural location so perhaps there are no neighbours or community who could help? I wish I was your neighbour, I would certainly help. Much love to you both and I wish you all the best with wrestling with that damned administration!

    Liked by 3 people

    1. The authorities do not really care: they deal with hours and money on paper. Not with real persons. The shopping lady does not even like shopping – she has told me so this instant. She does it because she has to but she would better see herself “socialising” with Anne-Fleur and myself. That is, driving us to the supermarket so that I could do the shopping myself. What she would do then, it is a mystery. Anne-Fleur pushes the trolley, I would shop. She would probably walk beside us????
      The neighbours do not care and no help is to be expected from any community. Going above the local beauraucratic steps seem the only recourse now.

      Liked by 2 people

  2. We are living in a surreal world. There are footballers getting millions for kicking a ball, and charity heads with huge salaries – and fat cats in the administration. Yet we are failing the people who need it most. What can I say…

    Liked by 4 people

      1. I have written to an organisation in Paris but all French organisations tend to be bureaucratic. As we are Roman Catholics, I have alerted the local bishop’s services for the ill and disabled persons. There are organisations mainly for disabled children and parents. Adult Down Syndrome persons are rather new. I have a feeling that the State or the local authorities do not know very well how to deal with them. They are not physically handicapped – just a little – they have degrees of understanding.. And mostly, they are put in specialised institutions or families who are paid to keep them when parents die. Siblings do not very much care for them. This is another aspect of our new society: familial solidarity does not exist anymore, and people need more and more work and money; we are consumers not human beings.

        Liked by 1 person

    1. The answer is easy: there are days where I do not eat but bread and coffee or tea for breakfast. Then I collapse and I am threatened of having Anne-Fleur taken from me and put in a specialised institution whether she likes it or not. So she is scared and loses vocabulary, power of reason, etc. Until I take it on myself again to be happy, moving, talking, eating a little more without exceeding the amount of money I am given.

      Liked by 1 person

  3. It is an awful situation. I do not know the French system on such matters. OK, I don’t know the American system either! If you are to spend 100% of your time as guardian, which is what seems to be expected, then it seems there should be more help. I hope something gets resolved.

    Liked by 1 person

    1. Anne-Fleur is purported to be able to talk, walk, help in the house cleaning, the cooking; she might even be deemed shopping if we were not far from the supermarket, needing a car. She would have some help if she needed to be washed, to be fed, etc. There is no help for “carer” or “caregiver” or “caretaker” – as we do not have a name and no status. Of course, the heart of the matter is that, this way, Anne-Fleur costs less to the national finances than if she were in a specialised institution, which is something she, I, her whole family has always not wanted. Home being where she is loved and best taken care of, intellectually speaking. Help would be necessary for material things.

      Liked by 1 person

  4. The hidden face of the West this seems to me. Here in Pakistan, we know how much advance the West is in so many ways, as compare to a third world country like mine. But this advancement fits best for only those who are active enough to sustain it.
    And if you are weak and can’t run along with others, like you should, then the nightmare begins.

    What you are going through Camille is not just ordinary. This is beyond extraordinary and my heart and prayers are with you.

    Liked by 1 person

    1. Thank you for your prayers, Hammad. I know that we sometimes tease each other but that we think of each other’s family as well. Adding your prayers is something very, very important for me.
      You are right in your analyse of the West: you must be productive and consuming here. African friends and I have often talked about the long agony of the “human being” and of family and community bonds. We are lonely beings trapped in rules and procedures. Not that I deny positive aspects of the West. There are very good things. But not everything. We have gained things, lost others.
      Anyway, your presence is a help and your help is precious. Thank you. Thank you very much.

      Liked by 2 people

  5. Hi Camille,
    Your situation unfortunately does not surprise me. As a person living with a disability and chronic health condition, I have experienced much difficulty accessing assistance, even with getting childcare subsidy while recovering from chemotherapy and I couldn’t take care of my kids and yet they still needed to go to school and have a life and my husband needed to work.
    IN Australia, we have a full-time carer’s payment. The forms are all geared very much towards elderly people so you can get caught out. The trouble we have here is when someone is borderline. They can be too well to need a full time carer and not well enough to look after themselves. So many people fall through the gap and I get so angry at our politicians who always see withdrawing benefits from the disabled as a way of reducing expenditure and winning political points.
    What I could suggest is linking a paypal payment to your blog so people could contribute. I’ve seen this on quite a few blogs. I’ve seen it with headlings like “shout me a coffee!” In Australia, we have crowd funding sites where people raise funds for all sorts.
    I would take up your cause as a human rights issue and join up with other people in your situation. You are not alone and people power can achieve wonderful things! Never give up!
    xx Rowena

    Liked by 2 people

    1. Thank you, Rowena. You perfectly understand my situation – our situation – as you lived through something equivalent.
      The Girls can be qualified as borderline as they are intellectually sometimes over the average French person; they read, they listen to the news, they are interested in history, geography, politics, opera, classical music; paintings, etc. But this comes from the education they received and still receive.
      With adapted instruments, they understand how to make work a microwave or a classical oven, they used to work the washing machine in Paris because it was newer and simpler than the one we have here, etc. But they cannot make a menu, do a shopping list, think about a balanced meal, wash, dry, iron their clothes, determine what to wear as they do not understand the link between the weather and their clothes, etc.
      In France when disabled persons stay at home, the relative who takes care of them has no status: technically speaking, I am nothing for them. I am no carer and cannot ask for any financial compensation. At the same time they have only three hours a week for a “helper” to come. And I have been told on Friday that there was no reason for the car that I drive for us all to be mended as they do not belong to them. No matter if I have money or not!
      I wrote here about these bureaucratic and regulation absurdities, paradoxes and inertia (and complexity) as it is new for the French administration to feel the weight of social media. I have contacted the two ministers in charge of these issues to inform them of the dysfunctions we meet, NGOs, and I have now a legal advisor.
      I hope things will move.
      Another blogger, on my Blogspot platform, told me of this possibilty of raising funds. I feel shy of it as it is like begging. But would things be too long to move, I begin to understand the reason to do it. I cannot stop clothing and feeding myself: that would but aggravate the situation.
      Thank you for your testimony and for your suggestions. I shall keep in touch. But your message is a ray of hope. 🙂

      Liked by 1 person

  6. I’m in agreement with the suggestions to contact the media (which could help to bring others like you together to battle this atrocity) and find others in similar circumstances…I’m sorry that the world has placed so little value on humanity.

    Liked by 1 person

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