Oh God, I can't sent a picture of a shit-fest to the PM and his wife! I am sniggering at the thought.. (feel a little better today largely due to you lot). Thank you for the all the practical advice though. Photos worth a try but not some I had considered.. because we just get straight on with rectifying the situation.. but can see the benefits.
ggglimpopo, I quite proud to say I have done everything you have listed I think.. the letter I wrote earlier in the year, it is in this thread . I am sad to say that nothing came of us contacting the local press and appearing in the local paper, in the end, but the fact that we got recognised in the street and feeling a bit stupid. Our 'hero' (photographer/fireman) from the paper, we have not heard from again. Have seen in paper couple of times so I know he got back from Ukraine ok. Feel a little let down a silly over that, because we were celebrating that something was getting done at last.. and then it didn't..
The letter I sent last Thurs is here..
(sorry for length)
Dear Sir
Transfer application in respect of our disabled child
We have, for over two years now, been on the transfer list due to the unsuitability of our [x] Housing property, for the needs our disabled child Alex, now 6, who suffers from a form of cerebral palsy and other health problems. [x] Housing has, on various and numerous occasions, received letters in support of our application, from a number of Alex?s healthcare professionals as well as social services and our MP Hugh Robertson. (We have copies of all of these letters.) This is due to not only our own distress at the increasing urgency of our situation and our requests for letters of support, but also to the reactions of the healthcare and other professionals who visit Alex at home and see for themselves the detrimental effect on Alex, of the property in which we live.
The issues are manifold and are exacerbated by other problems within our family such as my husband?s disability (psoriatic arthritis; a painful and debilitating condition made worse by the need to carry Alex up and downstairs, as I or our older son cannot always be around to do this) and our older son?s cystic fibrosis (he is kept awake at night because of Alex? sleep problems ? part of Alex?s overall condition ? as the two boys have to share a room, and this has a detrimental effect on his ability to fight off the chest infections which are an inevitable and potentially life threatening part of cystic fibrosis.) There are many more issues which I could list, regarding how our housing situation affects Alex and us all, and which I listed in full to Hugh Robertson MP, to which he stated he was ?appalled? (I understand you had a letter from him late last year) but the main issue which is constantly at the forefront of our minds because it is more than just a practical issue causing us all inconvenience, is that Alex?s development is being hindered and affected. And as time goes on, the situation worsens and we will not be able to get back these months and years in which we could have assisted Alex in achieving his full potential if only his home environment had allowed.
I would like to state at this point that we are not unaware that the reason we have yet to be rehoused is connected with the shortage of suitable housing for disabled people. I am fully aware that this is a problem for many families, some of who are undoubtedly in a worse situation than we are. However, at the beginning of this year, we sought to make ourselves easier to re-house by requesting a reassessment by a paediatric social services occupational therapist in an attempt to seek a property specification that was less specialised. This new assessment took place in January and it was suggested by the OT that we consider a three-bedroom property that included two downstairs living rooms, one of which could be used as a bedroom for Alex. (I happen to know for certain that this type of social housing layout is not uncommon and considerably more common that 4 bedroom houses.) Ideally, and looking into the future, Alex will need proper downstairs living and bathroom facilities, but for him to just have a bedroom downstairs would be immeasurably more suitable than our current situation.
To date, we have still not had even one offer, ever, of a potentially suitable property despite the area we have stated we would be willing to consider being as wide as we could feasibly allow. Furthermore, my repeated attempts to ascertain whether or not the new information was being taken into account on our application have proved fruitless, as have my attempts to get an appointment with a housing officer, either at our house or your offices in order to discuss this issue face to face.
During recent research into possible ways to assist our housing application, it has come to my notice that our current housing situation is actually breaching Alex?s human rights on several counts. I was already aware that children have a right to live in conditions that do not hinder their development nor affect their ability to achieve their highest potential, and for Alex, I feel this is particularly poignant as every milestone that he has achieved so far has been particularly hard to come by. In the past year he has actually learnt to walk with a Kay Walker (to understand the implications of this achievement I imagine you would need to be a parent or close family member of a disabled child but rest assured it was a massive milestone for him) but Alex is prevented from doing so at home because there is no space for him to walk more than a few steps. And he cannot use his self-propelling wheelchair indoors for the same reason, nor can we wheel him into the house because we have no wheelchair access. Nor can we park outside our house as it is an Access Only walkway and you have stated that we can only park on our front garden if we get a professional drive laid which we cannot afford. Nor do we have a storage space for his wheelchair, walker and other pieces of mobility and therapy equipment. (They are all piled up in the small 4? x 4? (approx) area at the bottom of the stairs and we have had to refuse bathing and other equipment that Alex could have benefited from due to space restraints.) Alex is daily being made more disabled than he needs to be by our housing situation, specifically by space restraints. In the last two years, as his cognitive abilities develop, he has become increasingly frustrated, particularly in the winter months at home, when he is ?caged? (by necessity) into our small front room, with dog restraints at the doorways which we have to put there to prevent him accessing the stairs/the cooker in the kitchen. A more open plan environment would make the world of difference to him and us. In fact a bit more space, and a few disability facilities would enable him in so many ways, rather than further disable him, as is the case now.
I would like to draw your attention to these excerpts from the Convention on the Rights of the Child (1989):-
From article 23 and with relevance, in particular, to children with disabilities.
Article 23
7
- States Parties recognize that a mentally or physically disabled child should enjoy a full and decent
life, in conditions which ensure dignity, promote self-reliance and facilitate the child's active
participation in the community.
- States Parties recognize the right of the disabled child to special care and shall encourage and
ensure the extension, subject to available resources, to the eligible child and those responsible for his
or her care, of assistance for which application is made and which is appropriate to the child's condition
and to the circumstances of the parents or others caring for the child.
- Recognizing the special needs of a disabled child, assistance extended in accordance with paragraph
2 of the present article shall be provided free of charge, whenever possible, taking into account the
financial resources of the parents or others caring for the child, and shall be designed to ensure that
the disabled child has effective access to and receives education, training, health care services,
rehabilitation services, preparation for employment and recreation opportunities in a manner conducive
to the child's achieving the fullest possible social integration and individual development, including his
or her cultural and spiritual development
- States Parties shall promote, in the spirit of international cooperation, the exchange of appropriate
information in the field of preventive health care and of medical, psychological and functional
treatment of disabled children, including dissemination of and access to information concerning
methods of rehabilitation, education and vocational services, with the aim of enabling States Parties to
improve their capabilities and skills and to widen their experience in these areas. In this regard,
particular account shall be taken of the needs of developing countries.
And from Article 27,
Article 27
- States Parties recognize the right of every child to a standard of living adequate for the child's
physical, mental, spiritual, moral and social development.
- The parent(s) or others responsible for the child have the primary responsibility to secure, within
their abilities and financial capacities, the conditions of living necessary for the child's development.
- States Parties, in accordance with national conditions and within their means, shall take appropriate
measures to assist parents and others responsible for the child to implement this right and shall in
case of need provide material assistance and support programmes, particularly with regard to
nutrition, clothing and housing.
I would also like to state that I am only too aware that, ideally, we, as Alex?s parents, should be seeking to provide the home environment that would allow Alex to achieve his highest potential, both physically and psychologically, but ours is a situation which due to no fault of our own (my husbands registered disabled status which currently, and for the foreseeable future, prevents both him and subsequently myself from working and also due to the needs of all three children (in the case of both boys, special needs) does not allow us to do this. However, this does not mean that we are willing to let the months and years pass and the opportunities for Alex to develop as well as he might, pass with them., without a fight. I am currently working towards a degree that I hope may improve our circumstances in the future, but I cannot make this happen soon enough to provide Alex with the living conditions that he needs and whilst we might be unavoidably failing him from a financial and material point of view, this does not mean that we are willing to sit back and fail him in all respects. With this in mind, and with this letter as a starting point, I have now decided that I am going to fight for Alex?s human rights to be recognised and accounted for, which is no more than most parents would do as I?m sure you will agree. His life is, and will always be, enough of a challenge without avoidable obstacles, such as a lack of space and facilities at home, affecting his development further. My older son also, has a right to sleep at night, for his precarious health to be preserved as much as we, as his parents, can possibly manage and my daughter, in fact all of us, have a right not to be continually affected by the stress that our situation is placing us under. Life has thrown us enough challenges without our mental health being affected and both my husband and I have been in counseling in the past year, a fact which you can verify should you require to, upon which you would discover that a major source of our stress, as discussed with the counsellor, has been our housing situation.
I hope you can appreciate that I am writing to you now is some desperation and for this reason I am sending a copy of this letter to Hugh Robertson MP who requested to be kept informed of our housing predicament. I would appreciate a response within a week and you should know that I am considering contacting the Meridian Newsdesk about this matter, as I have been advised to repeatedly (primarily by healthcare professionals) but which I have resisted doing until now. I realise that you do not have an abundance of properties at your disposable but also feel that it is feasible that something fitting our needs and within the approximately 20 mile radius we have stated, should have arisen within the last year if not before.
Yours faithfully
[ShinyHappy]
Now we are waiting to see what will happen next.
Am smiling about thought of DS in leotards and ballet tights.. must contravene a few human rights I think.. but hey who cares! He is going to wear some of DD's tights to bed next Sat for sure. ANd lovely JimJams is sending me some new (to me!) all-in-ones next week.
And ggglimpopo, my next port of call, if no joy from this last letter, is contact the children's rights ombudman, who I think might be called a children's rights commisioner actually.. am reseaching that at the moment.