Long term care and health care reform and the entanglements therein

A friend told me yesterday that her brother in law is a retired Maine lobsterman.

Now being a lobsterman also means having to deal with regulations, like those from whale advocates who want to reduce the number of traps a lobsterman can set. Lobster catchers are saying it's not the number of traps set that are the problem, but the rope that's used.

So why is this all reminding me of current discussions about long term care and health care reform? Whenever I hear proposed solutions, such as changes to the Medicaid Home Based and Community Care waivers, I keep thinking of people with disabilities I know who will get caught in traps or fall through the gaps of the parameters set. I'm concerned that those proposing these laws are too far removed from the actual experience of living with a disability - and trying to afford it- to understand that we don't want to be squeezed into programs we were trying to avoid in the first place by working.

As they discuss solutions to our future, it behooves members of the disability community to remember that we are going to have to live with the regulations that get put into effect. Some might be worrying about the number of lobster traps when they should be worried about rope. And, well meaning as all of this discussion might be, as long as we stay in the mindset of regulating what should be a civil right to live in the community, there will be people with disabilities who apparently have less rights than whales who get entangled in rope.

We need to make community, not institutionalized, care a reality with the Community Choice Act. It's more cost effective. But regulating it shouldn't be about setting up a complicated, convoluted system of qualification that will inevitably shut out people or- worse yet- force people into Medicaid. That's like laying rope that will entangle them. The real problems stem from issues like the high cost of equipment to stay mobile, equipment that is necessary to work but not available through programs designed for those who don't work. If we ignore factors like that, we are going to perpetuate the incentive to not work. If someone who works also pays into a program, is responsible for paying for expensive equipment on loans, then at what point does it break them financially? Ironically, this leads me to argue, even though I've always wanted to work and have worked, for legislation that simply acknowledges the high cost of equipment that isn't covered so you can work. This saddens me because I'd rather see the costs of living with a disability reduced so those of us with disabilities could work and pay for what we need, but we've created a system that has costs so high it's virtually impossible if you require both care and equipment.

I have grave concerns about every legislation I've read other than Senator Kennedy's proposed plan years ago, the CLASS Act of 2007 that would create an insurance program for people who become functionally disabled. It would provide a cash benefit to obtain services and supports so people could stay in the community, based on independence, choice and empowerment.

That's what many of us need - a predictable plan that would let us plan our finances in a way that acknowledges the extremely high cost of living with a disability. If we aren't going to get rid of those high costs in other ways (which it appears we are not), such a program could be expanded to cover those with disabilities (not just those who acquire disabilities, but those born with disabilities as well), and it would provide choices. Other proposed solutions have huge gaps.

Specifically, those pieces of equipment needed for mobility (i.e. wheelchair, accessible vehicle, guide dogs) are not being discussed as part of this equation. We must address these issues as part of this discussion because without mobility there is no work force among people with disabilities and we are back to a system that cares for us, rather than caring about our quality of life. If we can't get from Point A to Point B, we aren't going to have jobs.

Let's not rush toward legislation before we know what's entangling people here. The disability community is very diverse and the problems in forming such legislation are as well. I sincerely doubt that one solution will fit all. Take, for example, friends of mine with disabilities who are married to an able bodied spouse who need no care at home and may work part time but get insurance through their spouse. They don't see the problem at all - yet. Not until aging is an issue perhaps, or a spouse dies or something untoward happens. If they need a piece of equipment, the money is there to finance it. So they buy it. If their insurers deny a claim for a wheelchair, they finance it. They aren't even imagining that they will have to go on Medicaid to get care. So when they read about long term care and health care, it's not a huge concern to them. The same is true for those who live with their families.

It's a very different situation for a single person who does need care, even when he works. Are we going to continue with a system that makes it almost impossible to afford to work if you have a disability that requires care and equipment or are we out to make real change here? Because changes that just perpetuate the status quo for those in certain hierarchies of disability aren't solutions - or an improvement- at all.