How do I get help?

[Ernie]

Hi,

As you know I got my electric wheelchair in May and I enjoyed using it outside all summer.

When I got it I asked the local health department to install a temporary ramp so that I could get in the house with my wheelchair. I have been waiting since then and 2 weeks ago I called to find out where there were with my file and they told me that that they had more urgent cases than mine so that is why I did not hear from anyone.

So I have not been using my wheelchair for the past 3 weeks. I can't even bring it in the house because of the stairs.

An ergotherapist came to visit me on Monday and when she saw that I was able to get up from the chair and take my meds in the cupboard she kind of decided that I was not sick. She also told me that the only way I will be permitted to have a temporary ramp is if I have someone with me that will put it in the stairs when I go in and out and the rest of the time the ramp has to be secured in the house.

The most brilliant idea she had was to leave my wheelchair outside the house beside the door, at -20F in the winter!

Tuesday her boss called me to have permission to talk to my PCP to find out how severe and permanently sick I am. I refused to give them permission because they had already decided that I would not get the ramp so why would they need to check my medical file. They already have a copy of my ER protocol which gives my diagnosis, my meds and a decription of my physical disorder.

I have been making many phone calls all week and so far I am going nowhere.

I have heard that some people get help for cooking, doing groceries, cleaning the house, getting the house transformed for the wheelchair, etc.. When I ask for medical care they often refuse me because I am "too sick" and when I ask for household help they refuse me because I am "not sick enough" (because I can still stand a couple of minutes).

Do any of you have any suggestions as to how I can get help (ie ramp, cooking)?

I am getting really frustrated and fed up with our social system.

Thanks

Ernie

[MightyMouse]

Ernie, reading about what's been happening to you through the system over the past few years has been infuriating. I can only imagine how hard it has been for you.

The only thing I can think of is perhaps seeing if any of the faith groups in your area offer help. We have many churches and synagogues in my area who help those who are homebound, including providing meals, household care assistance like cleaning, etc. Also, many faith groups have volunteer requirements for their youth members. This holds, too, for many private schools and academies--there is a volunteer requirement in order to graduate. People who seem to know the most about what's out there are social workers. Not sure if you have one you know? Or if your area offers free social work services or low cost service.

Nina

[Sophia3]

Ernie,

I can NOT believe they told you to leave the wheelchair outside!?

If your doctor got the paperwork validating your need for it, I don't see how some 'ergonomics person' can UNDERMINE your need for the chair and the obvious need for a ramp. But that sounds indeed, like what she is doing? Does she know what orthostatic intolerance is?

Do you have disability with Soc Sec or through a job? Because if your dis insurance is through a former employer, wouldn't your need fall under the the ADA (American Disabilities Act) I have no clue what I am talking about there but the need for a chair for you to get around, yet a "no need for a ramp" from somebody makes NO SENSE!

If you have had to go thru the system on your own, I think Nina's suggestion may be your own route to try. I have noticed there are strict laws about ramps but when I drive by some homes, there are some major differences in the type ramps done, so I wonder who makes these rules??

Sorry you are so frustrated. They don't just hand out wheelchair papers to anybody. The fact you are getting a runaround about a ramp is ludicrous. I hope you can get some answers from SOMEBODY!

It's sadly another case of INVISIBLE illness and the folks you are dealing with "dont get" the illness.

[Aprilmarie52]

i'm sorry that they are being so unhelpful. I dont understand why people get public service jobs if all they want to do is be rude and ignorant.

[morgan617]

Ernie, even though you shouldn't have to do this, is there someone who can build a ramp for you? No one can do anything about one you've gotten yourself. I must say, people need to read about socialized medicine on a personal level before they get all gung ho about it. I am so sorry this is happening. I know how much you enjoy the independance it gives you....morgan

[dizzygirl]

Oh wow Ernie!!

I am so angry for you! iit really fry's my butt when I hear how people are treated when they clearly need help.. ARRRRHHHH!!!!!!!

I rmeber how happy you were and sounded when you posted and said that you got your wheelchair and were able to go Out-N- about.. nobody absolutley nobdoy has the right to tkae that away from you.. or to insinuate that you dont really need a chair.. and to leave your chair outside!! HELLOO!!!!! Its electric powered whelchair right? if it rains or snows it will ruin that chair! not to mention a regular wheelchair could be damaged also and rust in the nasty wheather..

I am sorry that you are having such a rough time getting help w/ basic necesities..Nina's idea of agencys and churches and such.. is a good idea...

I know what you mean about being to sick then not sick enough.. last year a social worker came to my house after a 6 day hospital stay and asked what I neeeded help w/ so I told her.. I got denied for a medical alert system and for home aides care (cooking-cleaning..ect.) they said that b/c I could still bathe myself that I dindt qualify for home services..! and more recently i found a service that could help me.. but PCP told me I am right on that fine line .. that I am very sick.. but not sick enough yet to waulify for hhc..

I feel for you ernie.. I wish that I had some suggestions for you.. hang in there.. and keeping trucking away..

[Sophia3]

Ernie

Have you checked out these sites? Don't know if this would help or if you could get somebody to build one for you as mentioned earlier.

http://www.americanramp.com/

http://www.discountramps.com/access_ramps.htm

[melly4]

Ernie, I am angry and frustrated for you. I think Nina's and Morgan's ideas combined could be a great answer. A local church group or even Habitat for Humanity might would be willing to build you a ramp. I know if you lived in my city, our church group would definitely do that for someone like you, who is in need. The government can be such a pain sometimes.

Good luck,

Melly

[michiganjan]

Hi Ernie,

Do they have a Salvation Army near you? My husband is a volunteer at our local Salvation Army and they have lots of resources. You could call and tell them what you need and see if they can help.

Michigan Jan

[MightyMouse]

Sophia, just a reminder, Ernie is in Canada, so US policy doesn't apply. I'm sure there must be some type of disability advocacy group or advising in Canada--if anyone has info, please post as Ernie is NOT our only Canadian member and it would be quite useful to share.

Nina

[Poohbear]

I'm sorry you are having to deal with this. I don't know what resources you have available to you in Canada. I know where I live in the US I was told in order to receive "free" home care in terms of assistance with cooking, cleaning etc. that unless you have private insurance that will pay it's virtually impossible. Medicare will pay for personal assistance (dressing, bathing etc) but most everyone considers cooking, cleaning, errands etc to be PERSONAL assistance and nobody wants to pay for that.

Do you have a program like Meals on Wheels in Canada? They may be able to help with meals.

In terms of the wheelchair; I agree that you should not give any more info to the place about your Dr's. Could you consider writing a complaint to whatever board handles their licensing issues? One thing a social worker stressed to me about talking to Dr's and others about my condition and the need for a wheelchair was to keep reminding everyone that I needed the SAFETY the wheelchair would provide (instead of trying to stand and thus passing out so much). Are you able to show success by using the wheelchair? Can you document that since using the chair your episodes of syncope have decreased? If so, that is what I would focus on sharing with the wheelchair company.

In terms of ramps, again, I don't know about Canada. Here, that is something most insurance will not pay for. It's totally crazy....the consider the ramps, in many cases, to be what they call "comfort & convenient" (a term Medicare denies many supplies based on). They would not pay for my shower chair calling it a "comfort and convenience" item even though I've only passed out in the shower once since using the shower chair. Prior to that I was passing out in the shower several times a month.

I'm sorry you are having to spend your precious energy fighting ignorance and bureacracy!!!!!

[Sophia3]

Nina

Thanks, I had no idea...I couldn't tell by the wording of her post she was in Canada. Sorry.

I do hear stories of the frustration of their Canadian medical system though!!! Yikes. again my apologies for giving bum info.

[Laura]

Hi Ernie,

I wish I had some helpful info for you as I am also in Canada, but I don't know where to turn to when the government is not willing to help with this. If it is a matter of it being a temporary ramp and they are unwilling to install it unless you have someone there to remove it each time you go in or out, what about asking about a permanent ramp? Would that make any difference in who you would be dealing with? Can you ask the ergonomic people what your other options would be if they are not able to assist you? Can your doctor send a letter to them supporting your needs? If I run into trouble getting the help I need, I find that asking the doctor to put in his opinion directly to who I am dealing with can help alot.

As for help with cooking, Meals on Wheels is a good option to look into as they deliver a full hot meal to your door. Hope things get sorted out for you soon. Laura.

[corina]

Hi Ernie,

I think Laura's idea might work. Maybe you can ask your doctor to write a document which says that you need a ramp and that you're not able to move/remove it yourself (which of course is ridiculos, how can they ask you to do that). Instead of them calling your doctor, you could ask your doc to write them a letter (which you can send them so that you are able to read it and make a copy!). I wish we could all write them a letter and tell them to get their scoop and stones and go at work immediately to build you a permanent ramp!!!

Corina

oh well, tomorrow is okay as well.

[Miriam Poorman-Knox]

Erniie,

Did you have an attorney help you with disability???? Maybe they could write a letter. This is counterintuitive to the point of having the wheelchair!!!!!!! Will ponder more and get back.. Miriam

[Ernie]

Hi,

Thank you everyone for your suggestions and your support. I feel emotionally stronger today. I will make a list of all your suggestions and will work my way from there. It feels so good to have you girls around, to be understood and backed up.

I believe we have something like "Meals on Wheels" and I will see if I qualify. I will also check with the Salvation Army and see what they can offer.

I cannot get a permanent ramp because there is a 2-3 years waiting period. I applied for it 2.5 years ago but the local health department forgot to put in my request so when I called last summer to find out if my name was close to the top of the list I was told that my name was not on the list! Even if it is their mistake of forgetting to put my name, I am the one who has to start waiting from scratch again. I will make some phone calls this week to find out if I can make a formal complaint about their mistake and save some waiting time.

I would just like to a have piece of plywood with stoppers on each side to that I can at least bring my wheelchair in and out once in a while.

A permanent ramp is worth between 5,000-8,000$ so it is way above my financial capacity. If I pay for the aluminum temporary ramp it is about 2,000$ which is still expensive for me.

Poohbear: Since I have my wheelchair I have had no syncope in public. Without my wheelchair I am homebound and with my electric wheelchair I can go out and do my grocery shopping and a few other errands. I cannot use my wheelchair in the house yet because I don't have the ramps. So I still faint in the house alone.

Love

[briarrose]

Ernie

I'm so sorry that this is happening to you. You have been through so many frustrating things. All I can say is that you have had enough life learning events for 100 people

I wish I knew the Canadian health system well enough to advise you on what to do. If I was a carpenter I would come build you a permanent one

Hang in there and hopefully something good will happen in all of this. Be persistant and keep your chin up.

Sincerely

steph

[Sophia3]

Ernie

How many steps are there to your front door?

Have you checked into those ramps used for loading furniture onto moving trucks? My nephews brought some furniture last week and the truck is about 3 feet off the ground. The ramp is strong aluminum or metal with ridges for tracking?

Maybe if you could get a hold of one of these and put some heavy stacked bricks or stones at the end of the base on the ground to keep it stable?? Don't know it if would work. Just a thought.

Sorry I forgot you were in Canada. I know folks from all over and across the pond in Europe post here.