This is it.. do you think it's ok? I really hated the 'begging' element of it! Had to make myself do that! As stated, it is not yet a fait accompli so if you think it needs editting, please tell me. I would be really grateful. I have changed the personal details, not because I mind you lot knowing who and where I am, but because I thought perhaps I had better not name the MP or the housing assoc (HA) in a letter not yet sent.
Dear Mr 'MP-Man'
I am writing to you in some desperation. I know you are very busy but I would so appreciate it you could spare a small amount of time to see if you could possibly assist us in any way. I would not be asking if I did not feel we were approaching a crisis situation.
Our problem is housing. We are waiting to be re-housed by xxxx Housing Association as our current home has become extremely unsuitable for the needs of our disabled five year old son. The situation is becoming more urgent by the week.
We have been thoroughly assessed by a social services occupational therapist and currently have 300 points on x HA's system. This puts us on a par with people who are involuntarily homeless. I fully realise that our situation cannot be compared to people without a roof over their heads, especially this time of year, but I do know that living as we are is harmful to us as a family, from both a practical and emotional point of view. I also realise that adapted houses/bungalows of the type we need are not available often, but in the 18 months we have been waiting (this would be longer, but we only moved back into the area in Aug 2003 ? for reasons relating to support for and by my family - and were not allowed to apply for a transfer on health grounds until we had been tenants for a year) we have not been offered anything at all. We have stated as wide an area for consideration as is practical - anywhere between [the town], where we currently live, and [other town]. Further in any other direction is not really feasible as I have to be close to my disabled father who lives in [other town] and who relies on me. We have requested that X HA share our details with any other housing associations that they liaise with.
Our family situation is a follows: We are a family of five; that is, myself, DH, DS Jordan, aged 13, our DD aged nearly 7 and our son Alex, 5. My husband is disabled with psoriatic arthritis. He suffers chronic/acute pain on a daily basis and has been unable to work for some years. DS1 has cystic fibrosis, a serious, life threatening and time-consuming illness, primarily affecting the lungs and Alex, our severely disabled child, has a type of dystonic cerebral palsy as well as other health problems which include epilepsy.
The boys share a room, which under other circumstances would be fine. We would neither expect, nor need separate rooms for the boys were it not for their respective medical issues. However, Alex's needs are such that the stairs are becoming a huge problem. I have fallen carrying him on several occasions, on one of those damaging my coccyx. He is becoming progressively heavier and so the stairs are becoming more of an issue all the time. The bedroom situation also a real issue because Alex has severe sleep problems and this means DS1 gets disturbed constantly at night. This is detrimental to DS1's health and his ability to fight off the chest infections which occur as a result of CF. Lung damage is a primary cause of death in CF. Unfortunately, average life span currently stands at 30 years.
Space restraints mean Alex has to sleep on a floor level bunk (basically a mattress on the floor.. we have no space for the special needs bed the occupational therapist has advised) and we have had to remove every single rung on the ladder enabling DS1 to get easily into bed! This is because despite not being able to walk or stand unaided, Alex attempt to climb up to the top bunk (indeed he will climb anything!) and on more than one occasion, has fallen and hurt himself. He does not have any real concept of danger.
Bathing is also a problem. I have to rely on the assistance of DD, bathing with Alex and supporting him while I wash him. As she is almost 7, this will not be appropriate for much longer. The OT has advised that Alex needs specialist shower/bathroom equipment, preferably in a downstairs environment, with his own, separate bedroom attached. We cannot have our current home adapted as this has been assessed as being too expensive to be covered by the grant which would be allowed for such purposes. Social services and X HA have advised that a move is necessary preferably to an adapted property and then if further adaptions were necessary, this then be covered by the grant.
We have no space to store the large quantity of special equipment that Alex needs daily. My husband also has equipment for use whilst bathing which means that the bathing aid advised for Alex had to be declined due to lack of space. There was just no room for both.
We have to have large dog restraint gates on the doorways to keep Alex safe. This means that Alex, when not at school, is basically 'caged' within our small living room. He finds this frustrating and it further affects his behavior which is always challenging anyway.
The space issue prevents us from having a walker for Alex to use, which is seriously affecting his physical progress and development. All he can do is crawl whilst at home when at school he is able to 'walk' independently because they have the necessary space. I am very concerned about this in particular. The other issues affect us and make our lives harder whilst this issue affects Alex and Alex only. I can see the benefit he gets from independent mobility whilst elsewhere and yet there is nothing I can do. We cannot even use Alex's wheelchair indoors, should we require to and the only place to store it is just inside the front door which is basically a tiny square area at the bottom of the stairs. We have to climb over the wheelchair - (and his special car seat owned by [the county council] for use to and from school) - to get up and downstairs. There have been several accidents. If we were a place of business we would be closed down for sure, due to persistent breach of health and safety regulations! We have no ramps or wheelchair adaptions at all. X HA are unwilling to make such adaptions when we are on the transfer list. Last year they agreed to pave us a small 12 foot area in the back garden for Alex to use a mobility aid on in the summer, but later retracted this offer. We cannot park outside our house as the house is down a walkway which does not allow parking. X HA gave us permission to turn our front garden into a parking area but said this had to be done professionally and at our own expense and so we have obviously been unable to do this. Some of our neighbours park on their gardens without authorisation or a professional drive but we cannot do this as we would be jeopardising the terms which allow us to transfer to another property.
We recently visited someone who is to be Alex's respite carer and she lives in an adapted home owned by Hyde housing. She has a lift, wheelchair storage space, an open plan downstairs living area, larger door ways. a paved area in the garden, ramps, movable wash basins, an adapted bathroom etc etc. I had heard about such facilities but never seen them within a home environment. My husband and I were speechless at the sight of this house because we could not help but clearly visualise how much easier all our lives would be if we had even half of the facilities, or some of that amount of space, to use. I am not exaggerating when I say we are now under immense pressure due to our situation and coping with the medical problems/disability within the family. Our other children are suffering also, as we struggle to cope with Alex's needs in an inappropriate living environment and I fear for the future because I know we cannot carry on like this without someone having an accident due to lack of space/appropriate facilities or our mental health becoming further affected. My husband and I are already on a waiting for counseling to help us deal with the challenging issues we face. We are under immense stress and every professional who visits our house regarding Alex, DS1 or my husband comments on how our housing situation needs urgently addressing. Many have written letters to X HA supporting our transfer application which has resulted in our 'maximum points' allocation but still we are offered nothing. I phone X HA regularly but am told that there is nothing. I don't expect preferential treatment; I know we are just one more family in need within an overstretched system; I understand that but I feel as if the time has come to fight for my family's needs. This does not come easily to me as I am uncomfortable with doing so while we claim full benefits but our situation is entirely due to the three out of five disabled people within the family, a completely unprecedented scenario, which also prevents me, as a healthy person, from working in order to attempt to support us. I am however studying for a degree with the Open University in hopes of a future where I might eventually support us.
Please, Mr. [MP Person], would you look into our situation. I have put off writing to you for many months despite being advised to do so by several professional sources, because I felt that we should wait patiently, but my husband and I are really struggling, in many respects now, trying to cope with the many demands placed on us by our two sons' medical and disability issues and the situation has become virtually unlivable from a practical point of view. You should see us in the mornings trying to get the children ready for school. We get up very early (despite a disturbed night, every night). Alex needs washing/feeding/dressing/medicating (much the same level of care as quite a young baby) in time for the arrival of the taxi (school transport); DS1 has to do physiotherapy and have nebulised antibiotics as well as eat a large breakfast as part of his regime; my husband is in the worst pain of all in the mornings but I cannot physically manage without his help and so we are literally all falling over each other and Alex's equipment in an attempt to be ready in time. Just one aspect would make such a change for the better - and that is more space. Any facilities above and beyond this would be an added bonus to say the least.
If you need further information/clarification, eg names of any of the medical professionals my husband or sons are under, please don't hesitate to ask.
I really appreciate the time taken to read this letter and I apologise for it's length but needed to paint an accurate as possible picture - without any exaggeration - of the difficulties we are having. I would be eternally grateful if you could attempt to help us in some way. I am not aware of any other sources of help or ways forward that I have not already pursued other than contacting the Meridian news desk. I have seen other local families featured in order to highlight similar predicaments but as you can imagine, I am unwilling to take this course of action unless absolutely necessary.
I look forward to hearing from you and thank you sincerely in advance for any time you spend attempting to help us.
Yours sincerely
Sleepy Jess.