Epub: Roessler et al. Specialized housing and transportation needs of adults with multiple sclerosis. Work. 2012 Jul 19.
Background: This study evaluated the specialized housing, transportation, and resource needs and barriers of adult MSers.
Methods: Information pertaining to barriers and barrier removal strategies related to housing and transportation issues for adults MSers was gathered as part of a national survey of a randomly selected and representative sample of 5082 MSers, in cooperation with affiliate chapters of the National Multiple Sclerosis Society (NMSS) and the North American Research Committee on Multiple Sclerosis (NARCOMS). A qualitative analysis of participants’ responses to questions addressing: (a) barriers to obtaining specialized housing and adapted transportation for individuals with MS, (b) factors contributing to maintenance of an independent lifestyle, and (c) information and referral resources pertinent to obtaining specialized housing and adapted transportation.
Results: The results provide the first assessment of these issues on a national scale and underscore the need for increased access to professional consultation, financial resources, and housing modification information and resources to enable persons with MS to obtain the specialized housing needed to maintain maximal independent lifestyles.
“Although this is a US study the results highlight the problems MSers have with accessing appropriate housing when they become disabled. This issue is very topical in the UK with the coalition government’s plans to cut disability benefits. In my opinion, MSers who live in the UK and Europe have it better than MSers in most other countries.”
“In the UK most of the problems in relation to housing that we see occur in cutting through the red tape to access services. Delays in obtaining appropriate housing or modifications to existing homes is the main source of frustration.”
“Are any of you having problems with housing?”
Like this:
Like Loading...
Not yet, but it's one of my main worries if I were to become disabled in the future. I just hope that they start to build more new homes for older people which are similarily fitted, so that MSers can get one.
Yes, I think about this also. The British Government is very poor at specifying what services disabled MSers are entitled to and what contributions it's willing to make when it comes to adjustments. As I have my own home, do I have to pay for adjustments or is that only open to those in social housing?
For once I find myself agreeing with one of your comments Prof G, ( I don't expect it to continue). I can't speak for any other Countries, but concur it seems the financial help in the UK is there (for the moment anyway) , but accessing it can be the most frustrating process and one which can increase harmful stress levels ten fold.We are (but I guess this is a similar story for others), 2 years into an application for house adaptations to include a downstairs wet room and bed room.Whilst I agree there has to be a level of management to the issuing of funds in order for appropriate needs to be met, the layers of the bureaucracy are eating away at the funds in place.A typical example, we applied for a grant for help with above, we were pointed to the direction of the agency who deal with this sort of application. To keep it short, we were eligible for a large percentage of the full grant,only to find this disappeared in the calculations when the 'Non for profit Housing Agency' put on their fees on and came up with quotes for the building work which were 50% higher than a true market figure.As with a lot of the money which is out there, it is not finding it's way to the last link in the chain before everyone else has had a nice slice of the cake.We have now cut out the middle man and have applied to the local district council ourselves, (much to the annoyance of everyone involved, well I guess if you're fond of cake I can see why). Unfortunately we are still in this long drawn out process and it seems if the collective organisations ( ot's, local council etc) can find a way of dragging it out further they intend to do so. Not everyone is able to keep up the fight and consequently their needs go unmet and hence any chance of independent living slips slowly away, this is the same reason why a lot of means tested benefits become unworkable. I've not given the answer much thought until now, but surely a sliding scale of help would be more efficient, ie if your wheelchair bound stairs become a problem hence a standard procedure to overcome the problem. If you lose your sight and so on, I know this is only a working idea, but something needs to be done because there are many organisations making a lot of money out of other people's misery (all be it 'non for profit organisations).Regards Andy
Short answer to above, we own our home, help is available to all dependent on your income / savings.