The View From the Bottom of the Shaft

You see the ads for the various scooter and power wheelchair places. They’ll help anybody get a scooter, right? Well, yes, if you have the money. Otherwise, unless you can meet Medicare’s stringent rules you are out of luck. So what are those rules?

How to Know if You Qualify for a Power Wheelchair or Scooter
You must meet all of these conditions to qualify for a power wheelchair or scooter:

• •You have a health condition where you need help with activities of daily living like bathing, dressing, getting in or out of the bed or chair, moving around, and using the bathroom.
• •You are unable to operate a manual wheelchair.
• •You are able to safely operate the controls of the power wheelchair or scooter.
• •You have had a face-to-face exam and received an order for the equipment fromthe doctor or practitioner who is treating you.
• •You must be able to safely use the power wheelchair or scooter in your home.
• •You have interest in using a power wheelchair or scooter

.You must also meet the conditions below to qualify for a scooter:

• •You must be willing to use a scooter.
• •You must meet the weight capacity of the scooter.
• •You must have good vision.
• •You must be mentally able to safely use a scooter.
• •You must be able to safely get on and off of a scooter.

Remember, you must have a medical need for Medicare to cover a power wheelchair or scooter. Medicare won’t cover this equipment if it will be used mainly for leisure or recreational activities, or if it’s only needed to move around outside your home.

So basically what this boils down to is that you have to need a lot of help to qualify for a power wheelchair or scooter. You must need it inside your home. However, this doesn’t specify if that means inside your tiny 600 sq. ft. apartment, or does it mean you can’t get to the lobby for your mail without it.

OK, I can bathe, dress, transfer and toilet myself. I can walk around my apartment. I can even walk a couple of blocks. What I can’t do is go to the grocery store without a scooter. I can go to the library, but it is painful. I can’t go to a park. I can’t go anywhere I have to do much walking. I have conditions with my arms that would make a manual wheelchair painful for me. So basically, without a scooter, I am stuck at home most of the time. This is a set-up for depression. And I’m already a chronic depressive that needs three antidepressants daily to get out of bed.

I am not the only one to point this out. In 2004, the Center for Medicare Rights issued a paper (pdf) pointing out that the “in the home” rules Medicare applied were 40 years old, and no longer matched the law regarding disability rights. They also point out, as I have, that not being able to participate in community activities can lead to secondary health concerns, such as falls or depression. Certainly, confining durable medical equipment to what is needed in the home does not meet the letter or the spirit of the Americans with Disabilities Act. It’s been four years, and still we have these restrictive and repressive rules.

So what can I do? I can ask for a chore person to help with housework and groceries. Unless the person is a volunteer, I am costing more per year than a scooter would cost. This is a stupid waste of money. So is the increased antidepressants and therapy I will need to cope with being stuck indoors a lot of the time.

Also, these guidelines don’t make sense. I have to need help with ADL’s and still be able to safely get on and off the scooter? If I need help to bathe, dress, get in or out of bed or chair, moving around and using the bathroom, how can I get safely off and on a scooter? Or by help, do they mean I need to use a walker to get in and out of chairs, or a mobility dog? WTF? I don’t know.

So right now, with my scooter which my father bought me broken, I feel like I am imprisoned. Places in the neighborhood that I could get to easily on my scooter, like the grocery store, are out of reach. The grocery store I go to is down a steep hill, dangerous in a manual wheelchair. Or I can go the long way, around the block, and down a not so steep hill. *sigh* Or I can go shopping at the more expensive stores. And I don’t have food stamps, I make too much money. It’s a conundrum.

I am not the only one for whom this imprisonment is a problem. Many disabled people who require home care are then not even able to go to lunch with friends (8) for fear of losing their home care benefits. If they lose them, they end up in nursing homes, at a much greater cost. These interpretations were ruled improper by the courts in 1998 (9), so why are we still fighting this battle ten years later? It was only in 2000 that the restrictions were loosened enough to allow the “homebound” to attend religious services.

One advocate for the disabled contends that CMS, the Center for Medicare and Medicaid Services, willfully misinterprets the rules in order to keep costs down. (7) I think this is correct. Why else require people to stay at home, or so narrowly interpret the rules as to keep people confined in their homes, and not provide them with services that could keep them out of nursing homes, or enhance their ability to interact with a community, an important part of preventing depression in any group. Especially the disabled. Efforts made in 2003 to change the homebound rule to one which stated that it took “considerable and taxing effort” to leave home have apparently come to naught. The standard should not  be whether the patient can leave the house, but rather whether it would cost more to confine them to a nursing home. It almost inevitably would.

Bibliography

1. Latest Medicare Wheelchair Proposal: Friend or Foe
   
2. Medicare Rules Targeting Fraud Hit the Severely Disabled
3. Protecting Medicare’s Power Wheelchair and Scooter Benefit
4. Forcing Isolation is Another Word for Abuse of the Disabled
5. Bush Administration Falls Short on Medicare Homebound Rule
6. Medicare’s Wheelchair Policy ‘Imprisons’ The Disabled-Study
7. Discrimination Against Wheelchair Users Imprisons Them in Their Homes
8. Hostages of Home Care
9. Home-Care Denial in Medicare Cases is Ruled Improper
10. Medicare Homebound Rules Update-2002

I posted over at Silverstar’s Magical Adventures about the Pseudo-inspection, but it makes me wonder what is going on? Not only did I get this notice of inspection that apparently wasn’t meant for me, but today when I took Friday out for her constitutional the Jesus Lady was outside wearing a homemade sandwich board alleging unfairness in the handling of residents by the Seattle Housing Authority. I stopped and had a long chat with her.

I call her the Jesus Lady because she puts on a prayer luncheon every month, wears a WWJD lanyard, and has a hat that says Jesus Love You. She runs clothing drives for the homeless, and does other good works. Every resident gets a Christmas card from her. She is a good-hearted soul, and apparently people bring their troubles to her.

The story I got from her was that some residents had been served ten day eviction notices apparently for cursing during one of the meetings we’ve had lately. I’m sorry, did someone say they didn’t like the fucking way things had been run? Oh, get over it.

I don’t know where this is coming from, I didn’t get a lot of specifics. Jesus Lady rightly said it wasn’t her story to tell. So I will tell here some things I see going on.

We were supposed to have our windows replaced this month. They are old, badly installed, and leak like a sieve. Which reminds me, I need to have maintenance come and caulk in the corner between the window and the wall, as even though I applied plastic over my window last winter, I still had a draft and needed many layers and a  quilted throw to sit in my chair and read or watch TV last  winter.

Well, the deal for the windows fell through for some reason. It’s fallen through every time they say they are going to do it, three times in the last five years. Meanwhile, not only do we freeze, our energy bills are sky high because we are heating the great outdoors. Not everybody knows about the plastic for the windows, can get to the hardware store to get it, or has a friend who will help apply it. Or can afford it. Personally, I think SHA should apply it for those who want it. What are they doing with all the money that gets appropriated for the windows we never get?

Anyway, during the meetings for the never appearing window replacements, the residents were told that we would be moved to a hotel for three days during replacement. This building was built in 1978, I am sure it is for asbestos abatement purposes that we are being moved. However, we were told we couldn’t come near our apartments while they were being worked on.

This upset some people. We are poor, all of us. Some of us have gotten everything we own from the free pile downstairs. Some people, like me, have a great deal of computer equipment or other nice things we bought with our crazy money. We are worried about our belongings.

Add to that the fact that in any building full of disabled people, there are bound to be a couple of paranoid schizophrenics. Tempers flared. Did this cause the discombobulation of certain residents, as has been alleged? Or is something else at play.

Now we come to the psuedo-inspection. Imagine how discombobulated you would be if you received notice that you were going to be inspected. Then they didn’t show up on the appointed day. Then they did show up the next Monday. This could be discombobulating to normal people, much less folks who may have problems with anxiety, depression, and paranoia. So were the notices that I received delivered to the wrong floor accidently, or on purpose? Either way, it’s either malicious or incompetent.

Recently, I had a run-in with a pay-or-vacate notice. When I got it, the letter that accompanied it was not addressed to me, but to someone else. That pissed me off, I don’t need other people knowing my business. Unless I tell them. I was assured that the other party was in the hospital, and didn’t get my letter. But I’m still pissed. And I’m pissed that I was charged $33 this month because they couldn’t find my automatically sent payment, and called it late. Bastards.

There may be racism involved. Not the way you would expect, however. Our big boss manager is black, at least one of the targeted residents is white. And being of the Caucasion persuasion myself… Oh, wait, paranoia is not one of my diagnoses.

I wanted to take a picture of the Jesus Lady’s sign. She wouldn’t let me. I told her I would blog about it. She said The Lord would take care of it. Reminds me of the story of the man on his rooftop in a flood. A raft floated by, but he knew God would save him. One of his neighbors in a boat came by, but he knew God would save him. A helicopter tried to pick him up, but he knew God would save him. Inevitably, he eventually drowned and was met at the pearly gates by Saint Peter. His first question is why God didn’t save him. To which Saint Peter replied, “We sent a raft, a boat and a helicopter. What were you waiting for?”