Disability survey/question

[ppearl214]

I had a difficult time figuring out which forum to put this in as it could be posted in many (JoeF, don't move this, ok? )

Many of you know that I was appointed by the town I live in to a 2 yr appointment on our Commission for Disability.  Tonight, we had our monthly meeting and something was presented to me that I wanted to ask you all.

As it pertains solely to our AN journeys, what would an AN patient seek to research from a Commission for Disability? Now, we know many that participate on this discussion forum have run into disability issues (ie: how to be deemed "disabled" and to be eligible for Disability insurance, etc).

If a webpage for the Disabled was available to you... as an AN'er, what kind of info would you seek out on such a website?  Would it be job sources?  Local/State Gov't agencies to extend help? What kind of help? Local vendors that go beyond the call to help the local disabled community (ie: if a grocery store delivers groceries, if you happen to be unable to go out, etc)? 

All responses appreciated.
Thanks.
Phyl

(btw, they do lurk this site.... Hi Jeanne!)

[claire1]

Hi Phyl

One big thought that I would like to know is;
                                                              Are there avavilable pulic transportation by means of a mini van that could bring us to and from a dr's appointment.  I know there is one for the elderly but is there one for the AN'ers?


I want to thank you so much for the other night.  It really helped me out of the hole. Doing much better
*)
Claire

PS  Congrads on you new post.  They chose the right person for the job. I hope they know what they have in you.*)

[ppearl214]

Thanks for the kind words Claire. Always glad to help out as best as I can.....

Ok, so, it would be beneficial to you to see links on a Disability Website that offer links for local transport services?  Sounds good (I know locally, we offer such types of services but unsure about offerings as such for you locally).

So, toss out to all.... what type of services/products listings would you view on a Disability Website?

Any and all suggestions truly appreciated. This is soley for the thought of being and AN'er and what an AN'er would find of interest.  Most important to us to know.

thanks again!
Phyl

[Jim Scott]

Phyl:

Specific information on the requirements to be considered 'legally disabled', as you mentioned, would be very useful and pretty much expected on a web page from the Commission for Disability.  I would want to see the contacts for local and state agencies that I might wish to access for help with various matters pertaining to AN disability.  I know that there are many state and some local agencies that offer information and specific help regarding the disabled but many residents simply have no idea who they are or how to contact them.  I believe that some charity organizations offer rides and other types of assistance to the disabled but they are also usually little-known, especially if one has never needed such help.  I would focus on those folks.  Those born with a disability usually know and use all the government (and private) help that is available.  I know a lady born with spinal bifida.  Her income is solely derived from federal and state disability checks.  She lives in a wheelchair-friendly apartment and the rent is heavily subsidized by the state.  She has a motorized wheelchair - paid for by the state - and her many medications and a visiting helper are all paid for by a combination of state and federal funds.  You know what?  I don't begrudge her a dime.  While AN patients may not need help to that extent, they could use some direction and a disability-oriented website could offer that, so I hope this idea comes to fruition, Phyl. 

Jim

[LADavid]

Phyl

This is from my personal need since I can't work with a synkinesis grin -- I would want to know about State and Federal disability income sources.  I still do -- they're hard to find.

David

[Raydean]

David, your local Social Security Office should be able to help you  determine amounts and eligibility of Social Security Disability.  SSD is based on your work history (wages) thru out the years.   SSI is based on family size and total family income.  We found going into the local SS office and sitting down and talking to a worker to be very helpful and we gained alot of useful information. 

Looking back, a central source of information and what's out there would be nice.  Personally we found the Dept. on Aging to be a wonderful source of information.  You'd be surprise what they know and the contacts they have.  They really know it all!

Phyl, if I had only one message to give to you for your meeting, it would be that there are far to many short comings with the system.  To many are getting lost in the system.  It shouldn't be,
but, but the truth is that lawyers are/have recommended that couples "divorce" in order for the disabled spouse to qualify for much needed help. It shouldn't be a choice between divorce " but you can still stay together"  or risk facing major financial issues.  BTW, you know which one i chose.

Best to all
Raydean

[ppearl214]

Yes, I do Raydean!    Thank you SO very much for sharing this... and to  you all.... thank you!!!!!

I know, for many, AN patients tend to be a "hidden disability" as many do not have outward/physical issues that others could easily recognize (although some do by enduring facial issues, etc).  The key question, to me, then becomes.... .as an AN'er....  how can we obtain benefits when some are deemed as having a "hidden disability" and what services/programs/websites would be helpful?  To me, it's a tough call since many cannot "see" SSD (single-sided deafness), etc.

Thoughts? 

On a Disability website, for AN'ers use only, thoughts of links for American Sign Language (we've seen it recently discussed here) to take classes for Sign?  Mobility sites (as Claire noted) if balance/walking/driving is of issue? (we know many AN'ers have issues driving cars at night)?  Local gov't links (as noted here by many) for Social Security as well as gov't employment agencies (esp. in the case in need of discrimination in hiring practices)?    Home health aids to help if surgical assistance (ie: like Visiting Nurse Ass'n) is required?  Links to "internet patient medical care updates" (such as CarePages) where family members can post medical updates on AN'ers that just had a procedure done so they can keep everyone updated via the internet?  also, how about links to the local Registry of Motor Vehicle's webpage for HC Parking Placards/Car tags for those that may need them?

I'm just tossing out a few ideas that my poor brain boogered head thought.... your thoughts?

Thanks!
Phyl

[Palace]

Hello Phyl, Friends and Newly-Joined Forum Members,


I'm appealing, being "turned-away/down" for my SSDI benefits.  What I went through before being properly diagnosed, (is long) as many of you suffer before, getting the right help/treatment.

Right now, I'm awaiting a court date for my second chance to get "my own monies" back.  (into what I paid---SSDI, working to help people in the dental-field, over the years)  Truthfully, there is no possible way I could properly do my professional job with the problems, I'm left with.  I'm sitting here after taking 100 mg of Imitrex.  I had a migraine headache all night long.  I also took 100 mg of Imitrex when I went to bed.

People see you as you are and they don't know what you suffer, inside.  Phyl is right; we need to bring these issues into the open and have links for each problem.  (SSDI data, etc.)  The truth is, over half of us shouldn't be here on this site in the first place!  I went to the doctor many times with my symptoms.  (there is an issue for a court battle)  My severe problems were brushed-off by doctors, as something "light" or something else! 

I'll be watching this topic, thinking about it and if I can help.  I'll log-on and let you know what is happening with my claim/legal issue.  (hopefully, posting my data in the correct place/category)

Many of us suffer ill-effects which go unrecognized!



Thank you for any help with me....



Palace

[yardtick]

Palace,

WOW!!!  What you said hits the nail right on the head!  We might look fine on the outside, but it's the inside that's hurting.....headaches, vision problems, hearing problems, etc.  I too have been told you look to good to be sick and I respond I'll trade you an hour in my shoes and make up does wonders. 

Thanks Phyl for addressing this issue.

Anne Marie

[ppearl214]

*bump*

Hi all,

As our monthly CDI meeting is tonight, I want to make sure all inputs are noted that you all can share with me/us.  I want to be able to present to the commision any and all thoughts, as it pertains to AN patients, of how a disability commission can help those of us with "hidden disabilities".

I will be sharing this with them tonight, so in advance, on behalf of the CDI, I thank you for your thoughts/inputs/comments.

any and all help appreciated.

Phyl

[HeadCase2]

Phyl,
  I was thinking that it might be useful to have a web page for businesses that would help them retain or gain business from people with disabilities.  With perhaps some information on what types of things would cause someone with a disability to avoid a business.  A couple of examples;
1.  If background noise levels are too high, people with hearing problems may avoid a restaurant.
2.  If coridors and hallways are too  narrow, people using wheelchairs may avoid the business.
Regards,
  Rob

[Jim Scott]

Phyl:

The frustrating part of applying for Social Security Disability benefits is that, even though folks with demonstrable physical problems have to struggle to be approved, Social Security judges often rapidly approve those claiming 'invisible' mental/emotional problems.  I know this because my wife has a serious spinal injury problem, many surgeries and full medical documentation but her SS attorney advised her to claim 'depression', which was a valid description of how she felt when being run through the SS gauntlet.  She re-filed claiming 'depression' and was quickly approved for benefits.  That was in 1997.  She is still receiving the benefits.  SS requires her to see a psychiatrist every 2 years (at their expense).  He dutifully notes that she is still depressed...because she tells him so.  I doubt he cares much, except to collect a fee from the government.  More: a friend of my (adult) son, who - at the time was about 22 - filed for Social Security Disability benefits.  He had never held a job.  He claimed 'depression'.  Approved the first time he applied.  As far as I know, this fellow is still receiving SSD benefits.  Is that frustrating or what?

I realize that the examiners and judges cannot really know whether a person is 'depressed', just as no one can know what another person remembers, which is why that 'memory' defense is very effective in criminal proceedings  However, it's galling that someone with documentation and so on for a real medical disability has to fight like a dog for Social Security Disability benefits while someone claiming 'depression', real or simply transitory, is approved almost immediately.

Of course, the SS examiners consider your prior occupation, age and ability to find a different line of work, etc. when making a determination on your case.  SSD, while a definite handicap and one that can make some jobs impossible to perform, is not insurmountable.  Unfortunately, the balance problems, incapacitating headaches and everything else that encompass post-operative Acoustic Neuroma patient issues are very real but, unfortunately, mostly 'invisible', as Palace mentioned.   I think most of us can agree that the SS system is flawed but it is all we have at the present time.  That being the case, we need to learn how to navigate the system.

I would suggest that a website designed exclusively for AN patients have directions, tips and such on applying for Social Security Disability benefits.  The other things you mentioned are all good and should definitely be included.  Good luck with this. 

Jim

[Cheryl R]

I had to retire as a RN prior to my surgery due to my being almost totally deaf.    The cochlear implant was then going to be done later.    I was going to go for Social Security but did not apply pre op.   I only have state work retirement due to age and working 21 yrs.      Now I can hear much better so would I qualify for Social Security?       I am forgetful and possibly could be for quite some time.     My surgeon was unable to give me a good answer last week.         I don't appear too bad if you would meet me but I am aware of a difference in getting across some words  and how to express myself  at times.         Just enough that it is annoying.            I was back to work 2 months after my past AN surgeries but am almost 7 weeks now and do not feel I would be good enough.                I am going to give myself all summer and then see if I could return to work.   
I know there would be a prn position available.
                                                                    Cheryl R
                                       

[Yvette]

If officials would listen to me, I would ask for a "night time" only disabled parking tag for ANers. Many are denied these tags because we don't meet criteria, but in fact, if we are talking about after dark only, then we certainly do meet criteria, ie: significant chances of losing balance and falling. A night time tag does not exist, you have to be at risk of losing balance and falling ALL of the time, which isn't usually the case during daylight hours for ANers.

Yvette

[Sam Rush]

In California, the giving a disability placard is up to the Dr.   What I have done is awarded them to people w/ part time disabilities, such as AN pts who may be dizzy when tired, or after dark, and trust them to use it only when needed.  My ENT awarded me one for part time dysequilibrium, and I RARELY use it.