Replies to This Discussion

Permalink Reply by Linda Jane McLean on July 19, 2013 at 11:12

Isn't it a wonderful system, Christine?

I don't think that we are intended to move if we have a disability. I found exactly the same problem here in Scotland.

Nobody appears to think it is bizarre apart from the people experiencing it.

So, encouragement would help......

Do you have access to any support package at all? Friends or family? You need everyone on board for this one - I know - I did it once, and it was HUGE!!!

I don't know your circle, but if you have younger relatives or friends they can be really useful with the lifting and carrying. And they like helping.

We managed to get a workforce of sorts together, By telling everyone we knew about this big adventure, people became interested. As long as you are not relying on one person - or one person thinks that they must do all the work, that is when it can fail. Many people make it fun, have different talents,and will keep you from getting too stressed. 

There are different ways of saying thank you to relatives and friends. You can put them up for a few days "holiday", in exchange for some help. That way, they get a bit of break, as well as helping you. After all, there is nothing worse than going on holiday to find that there is nothing to do! 

Get some casual help - we used the local supermarket - to advertise for a cleaner/ housekeeper. This helped us to get to know the new Community.  But you could use a voluntary service to explain your needs arriving in a new area. Lots of voluntary services offer very practical help very reasonably.

But, most of all, grasp the nettle. Understand that you must do most of this yourself. There is no help for a great deal of the work: no coordinator apart from you.

 Take responsibility for organizing a work party, and you will be surprised what happens. I never regretted my move, although it was a  stressful and amazing journey. I learnt a huge amount, and hopefully a book will come out of it! 

I attach a document to let you see what was involved - although we had the benefit of Direct payments. but many times we had to fall back on family and friends - moving cookers, hanging curtains, replacing barge boards......I was amazed at the talent I found in this circle.  

ONWARDS AND UPWARDS!

Thinking of you specially,

Linda

Attachments:

• The development of Tulloch Ard (1).docx, 604 KB

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Permalink Reply by Rich on July 19, 2013 at 16:35

I did edit the post but it did not show up 2 points that might help you...

First the most important

If you receive any care or support services (including equipment), or direct payments to arrange your own care and services, you should contact the social services department at your existing local council and let them know you're moving.

Your local social services team should then contact the social services department in your new borough. The new team will then set up the same support and services you have been receiving, on a short-term basis, so that there is no gap in your care and support services when you move.

Later, your new social services team will do their own health and social care assessment and decide what services and equipment you're entitled to, according to their own standards. Different local councils may have slightly different rules about this, so you may not receive exactly the same services in your new location.

If you move without telling social services, there may be a delay before you can receive any services from your new local council.

Second

Ask your social services (current one) if they can get you a Local welfare provision via your current council or your new one, due to the emergency and the fact you wont be able to move with out movers, make sure you have the few quotes to give them too.

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Permalink Reply by Linda Jane McLean on July 19, 2013 at 17:12

Everything you say is correct, Rich. 

What is meant to happen and what DOES happen are totally different things.  You cannot sort out what is meant to happen when you are moving house. You must get on with it, and then sort out the various difficulties. Nobody understands how difficult it is made.

We were in the fortunate position of having the move streamlined for us by the 2 Social service departments involved. What did that mean? Nothing of any practical use.

Yes, the occasional Social Worker or OT may make soothing noises down a phone, while you try to organize your new life.   But if it is important that ramps etc, get done, then I had to  get the quotes,  I  had to submit them, I had to make the time,

Doors, windows, ramps, roof, attic space, bathroom design and installation all had to be dealt with by me.

You are left without any real practical help. As I said, even with the willingness and determination to grasp the nettle, it is one of the toughest things I have ever done. And I do not say that lightly.

I discovered that  the practice is totally different from what should happen in theory,and probably came from fairyland. 

Or have you tried it, and found it to be successful? Where was it, and what did they do?

Please tell!

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Permalink Reply by Rich on July 20, 2013 at 6:23

I have to admit this was four years ago, and the distance involved was only 14 miles, but my social guys swapped it over seamlessly (maybe I am the lucky one).

Although back then I got a community care grant instead of a relocation grant, but the care grants have been discontinued now... so i presume the only other alternative is relocation grant

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Permalink Reply by Linda Jane McLean on July 20, 2013 at 16:14

Thanks for that, Rich.

Rich,

Was it within the same Local Authority? That is what makes the big difference. 

To travel from light into darkness just to prove it can be done, is daunting. But there are still several L.A.'s who do not believe that disabled people can be trusted. Sad but true. The Policy may say otherwise, but if the people on the ground are Luddites, what chance do you have?

Thanks for sharing!

Linda

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Permalink Reply by Rich on July 20, 2013 at 17:05

Two different L.A's but they boarder on each over so it might of made a difference, if OP can not get no joy with social care team with this she should go and see the MP as with us less fortunate it seams when a MP gets involved things get done!.

If something does not go as it should with L.A's I would always make MP appointment.

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Permalink Reply by Christine on July 21, 2013 at 13:39

First of all, thank you both for your input, it does help to know there is someone out there actually listening.

I have a problem with several of your suggestions, those being:

I am totally alone here, there are no friends or family that can help. I have only lived here a year, so I don't know anyone either.

Because I sold my house just over a years ago, I still have more than I am 'allowed' in the bank, so I am not 'eligible' for any 'grants'.

I must tell you, I have spent hours and hours on the telephone attempting to trace some kind of help, but there is NONE! (unless I pay for it @ 3x - 4x 'minimum wage rate'.)

When I moved here from the House that I HAD to sell, I was given help, but those people no longer have any 'funding' from the government.

Believe me, I HAVE tried to get 'help' from the local 'Social Services', they say they can't help me, the 'Social Worker that 'discharged me from her care' last year without telling me that, has totally IGNORED my calls.

I am not 'allowed' to have more than £10,000 in the bank, but once I have paid all the people it looks like I will have to pay, I will next to nothing and not enough to pay for the 'adaptions' I need for the Bungalow.

Right now, the stress of this huge burden is beginning to tell.....

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Permalink Reply by Linda Jane McLean on July 22, 2013 at 12:01

Christine,

I know where you are from what you have said. On the phone for hours and hours.......been there, done that. Got the video and the T-shirt!

You have several options open to you.

1. Invest the excess money in a work/works of art.Good art resells easily, even during a recession. There is no interest on what you have hanging on your walls - it is only stocks shares and bank that worries them.

2. Get integrated. You have a huge amount to teach students. Would A University be interested in how difficult it is to move? Do they have a Social Science student who would like to write this up? From this connection, other things may happen, but that is further down the line

3. You can get help very cheaply by offering something in return. For example, if you asked for someone to work several hours, a day, but also offered overnight accommodation to offset the cost. Share meals, but make it clear that these are not free.

4. As I  said, advertise at your local Supermarket or Jobcentre. Then ask someone you trust, or a Voluntary organisation to be present with you when you interview and help to take up references. Explain that you are raising awareness of the difficulties presented to you, and they may be very willing to add your case to their portfolio of success.

5. Do you belong to a group with similar disabilities? You don't say what your disability is, but nationwide Charities can really get on board a case like this if it is well presented.

Unless and until you can make yourself eligible for supported payments, you will have to think imaginatively. Thousands of people are unemployed:Can you help them?

There are many homeless people, and PAIH  (Poverty Action in Housing) have a super track record of placing homeless people well. I heard an elderly lady speak of her experiences after her husband died, and how  much help she had received from taking various people in, how much she had learnt, how terribly grateful they were to her for their one room. She emphasized how much help she had both given and received. It was quite inspiring, and not something I would have thought of. But I certainly would consider it now. 

So, maybe if you look at things the other way around, you might find some answers. Meanwhile, I can only feel for you as you try to work your way out of Catch 22. There is no map, no compass. All I can do is offer suggestions, many of which I know you will read and dismiss.

But against each one you dismiss, add the question: "WHY NOT?" Justify your response.

Unless they have done this, nobody BUT NOBODY - understands.

Simply believe that you can -  and you will succeed.

And I believe that you can and you will!

Every best wish,

Linda

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Permalink Reply by Linda Jane McLean on July 22, 2013 at 14:13

One last thing: we have something called Housing Options Scotland here.

Is there something similar in England - or would you have to start it?

Linda

Permalink Reply by Linda Jane McLean on July 22, 2013 at 18:08

Hi,Rich,

Thanks for that info - although it is difficult to understand without knowing exactly how much you needed in the way of help, adaptations etc:

I work with Housing Options Scotland, and they provide a listening service for disabled clients, but it is very difficult for an organisation to respond with the speed, knowledge and ability that is required during a house move.

I checked Disabled Persons Housing Service - we have that in Scotland, though I did not find much South of the border.

By Googling on Forest of Dean and disability and housing, there does appear to be some  service which should be of help.  On the Forest of Dean Signpost site, I found a huge amount of information, but nothing about moving.

She could try to enlist the help of her GP, but unfortunately, most do not understand just the complex situation that she has undertaken.

Rather than going to my MP, I think I would write directly to the two Directors of Social Work involved in the case. (Copy to the MP, perhaps) I would explain my situation, and see if they could find a way to help me.

The problem is - it depends on the individual, how well the problem is explained, and how forward looking he/she is. 

CASE 1 "Well, she's leaving anyway. It's not my problem. I'll put a worker on it" Worker assesses the house move assistance request and decides that a visit in six weeks  time will suffice. There is no emergency.

CASE 2. "She hasn't even arrived yet. I'll get to know her when she does."

Neither of these responses assist.

Christine needs someone to fight their way through this morass for her. To be her champion.  Not to take "no" for an answer.

She could get a journalist to tell her story, and give a few people red faces, but she would need to be prepared to surrender her privacy.

There are a huge number of options, but when you only want to move house, you do not want to be confused still further, and have to write endless letters copies of which must be kept and filed! (Ah, NIGHTMARE!).

If anyone out there with a severe disability, has achieved a house move between Local Authorities without much hassle, I'd be interested to hear when and where, and how you managed it!

Because, in the end of the day, to attempt to get Health, Social Work, Primary Care, and installers of equipment, all on the same page at the same time, can seriously damage your health!

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Permalink Reply by Christine on July 23, 2013 at 4:11

This 'answer' is for both of the posters and the questions they have raised or the suggestions they have made, rather than write two separate 'answers', I am sure you will understand. 

Luckily, I don't have a 'severe disability' as such,it's more of a combination of ailments and conditions.

At 66 I am breathless, (C.O.P.D.,) I can only stand for a couple of minutes, due to a badly damaged back that hurts a lot especially when I am standing, plus steadily disintegrating hips and knees due to Arthritis, plus aching muscles that have got steadily more and more painful since I was diagnosed with Fibremyalgia back in 1991.

The 'Adaptions' I mentioned would be having a 'wet room' so that I can install a 'Sauna/Shower' to help to sweat the toxins from my muscles, ( that's why they hurt, as because of the Fibrmyalgia, they are full of Toxins and go hard.) 

Typing hurts my hands, this is due to a combination of both Arthritis and Fibremyalgia, but I try to ignore the pain and carry on...

When I get up from seated, it takes a lot of effort to actually get up and three or four minutes before I am upright. I use 'perching stools' for the bathroom and kitchen. 

Thank God for 'High Mobility' but even with a Car, I find that if I drive more than ten miles, it will take two days for my leg muscles to recover. So the Supermarket is as far as I get these days.

I did have my spare room advertised for 'the right person' for nearly a year, but the only people who actually got past the original questionnaire, wanted a free room and weren't really interested in doing any work as payment. 

I have even tried lobbying the local MP when I was trying to find somewhere to live, He assured me that 'something was being done' about the fact that there are only THREE 'Bungalows or Ground Floor Housing' to cover the whole of the South West, that's Gloucestershire, Somerset, Devon, Dorset and Cornwall.

I kind of gave up asking them for help...

What really gets to me is that the Local Social Services will NOT help me in any way and have 'Discharged' me from their 'Care' without telling me that!!!!

You are so right that I need someone to fight my case for me, but I cannot find that person.

The 'Forest of Dean' site, is called Signpost but although it does look like there is lots of help, in truth there is NONE!!!! Believe me I HAVE tried!

My arms, ( Fibremyalgia, ) and hands, Arthritis,) are hurting to the point where I have to stop, so maybe I'll add some more later on...

Thank you for your input.

I could not sleep due to the weather and spent nearly three hours typing this, dyslexia just doesn't help.

 

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Permalink Reply by Linda Jane McLean on July 24, 2013 at 12:01

Christine,

Thank you for that information.

You do seem to be in a bit of a bind. 

These questions need answered:

Is it absolutely essential that you move? If  so, why?

Are you making it as  easy as possible to fill your spare room/get assistance? 

Could you make the process simpler, and ask a neighbour for help with interviews?

Are there any local groups you could become involved with temporarily, who will support you?

What is your timescale for moving, if you must? Is it rigid? How much leeway do you have?

Could you do something completely different, like relaxation classes, and get to know where and how you can find more support?

I can hear that you are frustrated and angry, disappointed and stressed. Try not to let it show. Keep your public persona as happy as possible. That way you will attract people naturally.

I once knew a lady who had severe rheumatoid arthritis. I knew her from when she was walking to when she went into a wheelchair. Then she lost both her legs, because of circulation problems. After that, she went into renal failure. She was the happiest person I knew, and folk sought her out.

I once asked her how she managed to stay so cheerful. She responded:
"If I go about with a long face, nobody wants to talk to me. I have enough problems without loneliness, and a smile always attracts!"

I have never forgotten her bravery, her philosophy, her example.

If nothing I have offered is of any use, try this link

http://odi.dwp.gov.uk/involving-disabled-people/index.php

At least you can let them know how hard it is.

I am very grateful to you for raising this issue. It's something that nobody thinks about. Even when I was Vice chair of the Disabled Persons Housing Service, I was very much on my own, when it came to moving. I received occasional bits of advice, but the decision on how and when to move was mine.

A comment by one of the Directors afterwards was telling:
"That effort nearly killed you!"

It was accurate, but I'm glad that I saw it through.

Wishing you all the best,

Linda

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