The FEMA Loop

Here's one that really confused me. I call it the "FEMA Loop."

My Mom has a physical disability which makes it very difficult for her to re-locate to just any old place. And the place she re-locates to, needs to have certain "features" in order for her to reasonably be able to make use of it.

All was fine while she still lived in the old house that we grew up in on Long Island. It wasn't the best place for her to live, but it met her needs and she liked staying in the neighborhood that she knew well. Hurricane Sandy came. Thankfully we were able to convince her to leave her home the night the flood came up her street. And the next morning when she returned she found her house had been essentially destroyed.

I live in New Jersey. If you live in the NY-Metro area you know what it was like in the few weeks after Hurricane Sandy. There was no power anywhere for at least a few days. Power slowly came back over the week and then it was weeks more before the gas lines got back to normal. The morning after her home was flooded she called me (thankfully she was able to reach me on a cell phone) and told me that everything was gone. It was a sunny day in my town in New Jersey. I was walking with my wife on Main Street and we were looking around to see what kind of damage people had.

In our New Jersey town, the damage was no big deal - just your typical hurricane stuff, like all the other hurricanes we had when I was growing up on Long Island. But what my Mom described to me on that broken connection on the cell phone, barely getting out the words since she was crying so hard, it was something I had never experienced. She told me everything was gone. I really had no idea what that meant.

So that's some of the back-story. Many people have, very unfortunately, experienced that same back story.

But the story after that, for my Mom, is a bit different than for most.

Many people are still homeless after Hurricane Sandy. As a longtime NYC resident, I think of homeless in a particular way. It's that slice of NYC that we cross every day and although it's all around us, it still seems very separate.

Hurricane Sandy homeless is different. It's a bunch of people who sort-of have homes. And they sort-of have an idea of what it will take to make those homes liveable again. And they sort-of know how much help they are going to get to do that. And they're all pretty much what you would consider a normal suburban neighbor. They do things like mow the lawn and shop at Target and go to Jones Beach in the summer. Except now they're homeless so they don't really do those things as much or at all. And the things they actually do are all different. Because most of what they think about is how they are going to get everything back together. But it's hard to do that because nobody really knows yet what the answers are to any of the important questions about assistance, new building requirements, new flood policies, etc...

But again, for my Mom there's a twist. Heart-breaking as it is to see an able-bodied person have to bounce around between hotels, short-term apartments, and friends' sofas - for my Mom those things are simply not an option.

When you live with the sort of disability she lives with, everything you do is a big production. Because you never know what's going to happen so you have to be prepared for everything. And we live in a world that is pretty much physically inaccessible in most places for wheelchairs, so you have to assume wherever you go that it is going to be difficult to get inside, to find parking, to get through the aisles, to pump gas, to use the counter at the check-out, to find the elevator, to... you get the point (I hope). It's different in a way that you probably never thought about.

And that's why Congress created laws about it.

The Rehabilitation Act of 1973 includes two important sections which try to address the inevitable gap between the way the world is and the way individuals with disabilities need it to be to have equality. Section 504 says that any Federal program or service has to be accessible. Section 508 says that any Federal technology has to be accessible. These sections are ultimately enforced by the U.S. Department of Justice, although each Federal agency is also responsible for policing itself (Note: This part fails, miserably.)

And the Architectural Barriers Act sets requirements for design and construction of anything with Federal dollars that is used by the public or by Federal employees. It also covers anything that the Federal government leases (FEMA rental assistance, for example). The Architectural Barriers Act is enforced by the U.S. Access Board (i.e., FEMA has to listen to what they say, and has to do what they tell).

The Americans with Disabilities Act (ADA), passed years later, basically extends these same protections from the Federal government to make them all apply to the states, local governments, and any business or other facility which is open to the public.

So there's a lot of protection in there for the disabled. And FEMA further strengthens that protection by publishing and distributing a set of Non-Discrimination Principles of Law. This is a set of conclusions and internal requirements which are directly derived from disability law. Among them is the requirement that appropriate program modifications be made in order to ensure that FEMA's programs and services are accessible.

And... here's where it all breaks down. FEMA has that statement of principles on the website, and they've hired a staff of hard-working and well-meaning staff to provide advice and guidance internally to FEMA's operations staff in order to ensure programs meet access requirements. So on paper, they've got it all covered.

However, the fact of the situation concerning FEMA's housing policy on Long Island after Hurricane Sandy is that there is no designated program to provide for those with disabilities, and the "Inclusion and Integration" principles which are supposed to ensure that the disabled have equal access to services are instead apparently used as justification for the bizarrely implied claim that all of FEMA's programs are inclusive and integrated, so no program modifications are needed.

So that's the status of the housing program.

But that's okay, because again - FEMA has disability staff (and even a civil rights office) whose job it is to ensure that equal access actually happens.

But everybody thinks that equal access is happening, so they don't respond when you call them and say that it isn't.

But if you file a complaint with a civil rights office, the office is required to respond, so they do.

Three months later.

And they mis-state your original complaint so it all sounds like a simple misunderstanding.

And don't assign anyone to the complaint.

And promise to get back to you in six more months.

And then FEMA's disability team and everyone else says they can't talk to you because you filed a complaint and it is being handled by the complaint folks.

And the agency protocols.

Meanwhile, my Mom isn't being provided with equal access to housing services.

I've started writing on my personal blog about my personal experiences watching and helping my disabled Mom during her Hurricane Sandy recovery on Long Island.