Struggling to Get a Disabled Badge with a Stoma

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2
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1550
Lee99
Sep 17, 2019 8:06 pm

i had my ileostomy about 10 yrs ago now and then a reversal operation that failed, so then back to a stoma. 

I find that my pouch can fill up in minutes and has burst on a number of occasions when I’ve been out to much embarrassment, I spoke to my doctor about applying for a disabled badge so could always be parked nearer a toilet, she supported my claim but was turned down by the local council, I have heard that the disabled rules are changing to take in more disabilities like ours.

has anyone heard or been lucky to have been accepted for a disabled badge

Past Member
Sep 17, 2019 11:07 pm

Hi Lee, the badge is meant for folk who can't walk far and I understand

your problem. It's just the costa del uk rules.

Even, you may have a radar key, it does not allow you to park outside

the toilet you may need.

Most folk are understanding, sadly many are not.

I guess the abuse of the badge in certain parts of the uk has made it

so much harder for genuine people, as always.

S

Immarsh

Hi All, If you have an " old" or recent ostomy, this is the place for you. I think I've been a member for more than 15 years, but I have had my surgery, since I was a kid of 15 ( do the math-that's more than 60 years ago). As a teen, with a new ostomy ( for Ulcerative colitis) my parents dragged me off to my first ostomy association meeting. I wasn't happy, but in the long run, it's the best thing that happened to me. I met others, older, and teens like me, adjusting to the changes. A group of us started a Young adult group, and helped each other, and even visited kids who were new to the world of ostomies. But soon I married, and moved out of state, and although made some connections with other NJ ostomates, I became pretty much isolated. Until I discovered MaO. By then, I was having a myriad of other medical issues, and my aging stoma " wasn't doing well". I received a lot of help and support from members! I was pleased that I was also back to supporting others. I met a gal on line (from Papua New Guinea) who was trying to help ostomates in her country. There is a scarcity of supplies in some other countries, and unlike the US, insurance to pay for supplies isn't available. When my son followed his "love" twenty years ago, and moved to Australia I took advantage of an opportunity to help other ostomates. On one of my first visits to Oz, I brought a suitcase full of Ostomy supplies, handed them off to an Ostomy assoc. On the Gold Coast, who then had a friend take them to PNG. They were grateful for the help, and Janet and I still write.. This is the place to be, if you need help, and it also gives you the opportunity to provide help and support to others. Feel free to write, if you'd like to chat, about things ostomy, or life in general. Best REgards to all.. Marsha

Bill
Sep 18, 2019 7:10 am

Hello Lee.
Do not be put off by being turned down for a disabled badge on the first application. The rules are indeed changing to allow people with 'hidden' disabilities to acquire badges. However, this is not the point I wish to make about your application or your appeal.

Sometimes the worst person to make the application is the person whom the disability affects. It's a bit like being represented in court where the best advice/ representation is likely to come from a solicitor or barrister, because they have experience of the 'system' and know exactly what to say to sway the decision makers.

People who approve (or disapprove) the allocation of badges are given guidelines as to when a badge should be issued and the decision making is often arbitrary.
Many years ago when I was one of these arbiters (for blue badges), there was a simple ‘test’ which none of the applicants even knew about. They were given an appointment to see us at the end of a long corridor in our office building. The reasoning was, that if they could walk the length of the corridor to get to the appointment, then they would not be eligible for a badge (Simple but effective decision making).

With the advent of the new rules and the inclusion of people with ‘hidden’ disabilities, there will still be assessors who are sticking to the principles enshrined in the old rules.
What is needed are skilled and informed advocates who can educate the assessors about the necessity of having a badge for those people who were not eligible under the old scheme.


When I was advocating for people, I would outline what is called ‘the worst-case-scenario’, with graphic illustrations of what can go wrong if the ‘benefits’ (in this case a badge) are not allocated.
I found it interesting that, even under the old system, when I related stories about disasters surrounding incontinence and the need to access public toilets, I was encouraged to apply for a ‘disabled’ badge, with the assurance that I would get one, given my unusual and outrageous set of circumstances.
In my case, I felt I did not need the badge because I was only telling my graphic stories to illustrate that it is not only the overtly physically disabled that need help from the system. (That is the sort of emotional pressure which can eventually change the rules governing this sort of benefit.)
In my opinion, there should be no doubt that people with ileostomies and a need to access toilets quickly, should be allocated the 'disabled drivers’ badges.
I also believe that ‘someone’ should sit down and write a draft application, outlining all the reasons why this is an essential ‘practical, social/psychological and emotional ‘aid’ for daily living for people with an uncontrolled stoma (or incontinence) problem. Such a ‘draft’ document would give all applicants an idea of what they should be portraying to the decision makers.
I cannot emphasise enough the importance of having an independent advocate for this sort of application. If the applicant has a social worker, then they are often the best advocates. Sometimes the Citizen’s Advice Bureau can help with this in the first instance. On occasions, I have involved local councillors to advocate on behalf of people who need help from social services. It is best to find those who are already in positions of influence such as being on the social services committees.
Having said that. Research has shown that any articulate advocate can have a positive effect on outcomes regarding access to welfare benefits (especially in the case of appeals). So, if you have a friend or relative who has the ‘gift of the gab’ and a dogged determination to see fair-play, then get them to help you make the application and accompany you to any interviews.
I tend to have a very cynical perspective on the welfare system at times when finance influences decisions rather than the welfare of the people concerned. However, hope you find my comments helpful.


Best wishes
Bill