We're hearing a lot about Medicaid reform from the New York State and federal governments these days. Medicaid is a federal/state program that pays for medical services for poor people and many people with disabilities. There's more on Medicaid and reform proposal details elsewhere in this newsletter. This editorial is about the big picture. We have an excellent opportunity to engage our leaders on this issue. But that opportunity is in danger of being squandered by right-wing ideologues, political penny-wise-pound-foolishness, and a lack of what George the First used to call "the vision thing".
Medicaid is, for sure, expensive. For years, the fastest-growing budget items for most states have been Medicaid-funded long-term care and prescription drugs. Our future holds more of the same, as the baby-boomers age. For the next 25 years, whether we like it or not, more and more of our money--both what we keep in our wallets and what we contribute to the community in taxes--is going to pay for health care. It's also true that the US spends more on health care per person than most other wealthy developed nations--and yet we get less for our money than they do.
But is anything more worth paying for? Would you say that good health is not a priority? "Spare no expense!" most folks would say. So why not apply that primal concern to our political thinking? High-quality, affordable health care for all should top the state and national agenda. Getting the best bang for the buck is, of course, critical. We don't want to be ripped off. But politicians usually frame the issue solely as a need to cut costs. They aren't listening to us. The problem with health care isn't cost, it's availability and quality. It's not about cutting the bucks, it's about getting the best bang. That is the problem our leaders are supposed to be solving here.
Can we afford to solve it? Sure. A couple years ago, the federal budget had hundreds of billions of surplus dollars. Then huge tax cuts were enacted so we could "keep more of our own money." But most of us didn't get much more of our own money. Most of it went to rich people who were living quite well on what they were already keeping. Most of us got to spend more of our own money on bigger payroll deductions and co-pays for health insurance. Some 40 million of us have no health insurance at all. Does letting citizens go without health insurance save money? Nope. People with no health insurance go to hospital emergency rooms "for free"--but it's not free; your taxes go to hospitals to pay for it. And emergency services nearly always cost more than early treatment and prevention. Why does America spend more for health care than other nations? Much of our spending goes into the pockets of insurance and drug company executives and stockholders. Other countries cut out the insurance "middleman", and they buy drugs in bulk at wholesale prices. This isn't "socialized medicine"; it doesn't limit your choice of doctor or treatment decisions. It's the fiscally-conservative principle of reducing costs by eliminating redundant administration and excess overhead--the same principle that private enterprise uses to make profits. Only in this case, the profits go to the taxpayers. Paying for better health care for all is not complicated. We can go back to where we were in 2001 on taxes--when most of us didn't pay much more--and create a single-payer system for medical services. There's no question that we can afford it. There's a big question whether we'll elect leaders who will do what most of us want rather than what a few rich people want--but I digress.
Getting the best bang for our bucks could also be a lot simpler than our leaders think. A big part of it involves reforming Medicaid long-term care systems. And, one of the most effective cost-saving, quality-improving reforms possible really would let more people control more of their own money. It's not the only piece of the puzzle, but it's a very big one. Doing it right will require big reforms at the federal level, but there's a lot the state can do in the meantime.
Long-term supports for people with disabilities are very overregulated. There are really just two important rules that we need: Supports must be provided in adequate quantity and quality to all who need them, and they must emphasize individual, integrated community-based services. I'd be glad to have states design their Medicaid programs any way they like if we had agreement and solid enforcement on these points. But the current federal administration is fixated on the usual right-wing baby-and-bathwater approach to deregulation. In their hearts, they think government shouldn't pay for health care at all. The last thing they want is a federal health care system that works well. The last thing the drug and insurance companies that finance politicians of every ideological stripe want is a federal health care system that derails their gravy train. Most of us don't see it that way, and we ought to vote accordingly--but I digress, again. We need to focus our positive energies on state-level reforms now, because the best we can hope to do with the feds is beat back the annual block-granting proposals that would let states destroy the system.
In our state, task forces created by Governor Pataki and the state Senate have been studying Medicaid reform. I won't list the dozens of proposals they produced. I just want to call attention to one important idea that STIC and other disability advocates have promoted for years. It's very exciting that it's finally getting serious attention. But before I do that, I need to advise caution. Good Medicaid reform is a big puzzle, and all the pieces must fit to make any of it work. It's too easy for politicians to take a piecemeal approach to a set of proposals like this, passing what's easy to pass and letting other parts slip. And it would be easy for us to support new waivers, pilot programs and ending the county Medicaid share and declare victory, while letting destructive proposals, like eliminating spousal refusal and weakening the state's Medicaid managed care bill of rights, get through. We can't let that happen. We must keep reminding our leaders that it's not about the buck, it's about the bang, and their job is to respond to the many who need affordable, quality health care, not the few who make campaign contributions. We must remind them, and ourselves, of why people with disabilities care so much about "health care" services, and of the opportunity we have to apply our vision of equality and integration to long-term care reform.
It's an accident of history that "health care" means so much more to people with disabilities than to nondisabled people. Disability used to be seen as solely a medical "problem", so any solutions had to be medical. But having a place to sleep isn't a medical issue, nor is getting an attendant to clean that place, nor is getting and keeping a job. It's just that our programs to pay for them have evolved from a limited system for medical treatment only. As these programs grew, they dragged with them expensive medical-model regulations that don't make sense anymore. Yes, these things can affect health. So can just about anything else. These programs could have been tacked onto our job training, welfare or education systems. They would have been at least as effective and much cheaper to run, and we wouldn't have this big Medicaid long-term "care" funding crisis at all. We should move all the non-medical stuff out of Medicaid to a separate program, preserving eligibility and availability rules, but dropping the medical oversight, reporting, and staff qualifications requirements. That's a federal reform that won't happen soon. My point is, the need that drives most long-term disability support services is not about health or medicine.
It's really about leveling the playing field so people with disabilities can live and work and learn and form relationships like everyone else, in the same places where everyone else does those things. Just basic, ordinary real life. Not a sanitized-for-their-safety simulation of real life. Real life. Let's also remember that it's not about the caregivers; it's about the caregetters. The system needs to support caregivers so they can do a better job, but it should not make it easy for people to "throw away" members of their families, and it does not exist to provide jobs to public employees. In short, it's about fair and equal treatment for people with disabilities.
The medical model says people who need assistance can't be trusted to control that assistance. In nearly every case, that mistrust isn't valid--and it's insultingly discriminatory. In recent years programs were created to allegedly give more choices and control to participants. With very few exceptions, these programs are still excessively paternalistic, inflexible and expensive--and unlike the even more costly and restrictive institutional options they replace, they aren't even available to all who need them. When we confront officials about this, most of them say two things: 1. "Look, if you want government money, you have to put up with the government's rules," and 2. "If we deregulate and something goes wrong, we'll get sued." The real issue is that if they support true reform, public employee unions and nursing "home", adult "home" and group "home" operators will end their campaign contributions. But let's take their responses at face value, just for giggles. They say these things as though they were obvious facts of life that we all have to accept. But, you know what? We don't all have to accept this. When it comes to the many kinds of government-funded supports that Americans receive to stay alive and active, these "facts of life" only get applied to people with disabilities--and not even always to them.
Every month, tens of millions of elderly people, including millions with disabilities, get a Social Security check from the federal government. Without these checks, many of them would starve and/or freeze to death. Lots of elderly folks have problems with judgment; that's why con artists target them. Now, what regulations do these people, each of whom gets between $10,000 and $20,000 a year, have to follow in return for this government money? Do they need approved written plans for how they will spend it before they get the first penny? Do they have to send in spending reports? Do they have to let somebody into their homes every month to check up on them? No. They do not have to do any of these things. All they have to do is make sure the Social Security Administration knows where to send the money. Talk about a situation that's ripe for abuse! Every year the federal government spends hundreds of billions of dollars this way. Imagine how much of it gets wasted or misused or spent on "luxuries" by sneaky and/or mentally incompetent old people? You laugh, but I am not kidding. There is not a dime's worth of difference between the vast majority of people with disabilities and the vast majority of elderly people when it comes to the real costs of meeting their needs or their ability to manage their lives and money. The only reason we let elderly people spend their government handouts in privacy while we jerk people with disabilities around over every nickel is because old folks get their money from Social Security and people with disabilities get it from Medicaid.
Please don't insult my intelligence with the claim that Social Security is different because people pay a "premium" for it, like insurance, so it's really "their" money, not the government's. Social Security is not insurance, and we don't pay premiums. It's a government-funded support service that is paid for by taxes taken out of people's pay--just like my income tax dollars that go to OMRDD. The taxes I pay for Social Security today go into my dad's pocket today; it's not his money, it's mine. I'm glad to pay it. The point is, there's no fiscal difference between tax-funded retirement benefits for seniors and tax-funded supports for people with disabilities.
Just to further nail down the point that it's not about who the money goes to, it's where it comes from, let's look at SSI. SSI is a monthly cash payment that many people with (usually congenital) disabilities get from the Social Security Administration. SSI is a bit more regulated; it's income-eligibility-based and the amount you get depends on whether you live alone or with others. But if you qualify, then once again, SSI cuts you that check every month--to the tune of $6,000 to $8,000 a year--and they don't care how you spend it. Many states, including New York, add a little bit to your total SSI payment--and they don't care what you do with it either.
Maybe it's because disability supports are so much more expensive than SSI or Social Security retirement benefits that they have to be regulated more tightly? That sounds reasonable, but in fact, Medicaid regulations make disability support services, on average, about twice as costly as they need to be. Without those regulations, the average annual per-person cost for non-medical disability supports would be pretty close to the typical high-end annual Social Security retirement benefit.
But wait, maybe there really is a liability issue? Let's see. How many elderly people have sued the feds because the Social Security Administration didn't keep them from spending government money on junk food that clogged their arteries and gave them heart attacks? How many multi-million dollar federal settlements have been paid to little old ladies who gave their entire life savings to Nigerian internet con artists because no social worker kept track of their checkbooks for them? How many parents sued New York State because their kids spent the state's portion of their SSI checks on beer and crashed the family car while drunk? The answer is--are you ready?--none. I don't want to ignore the issue of people who are legally incompetent. Nobody is saying that they be given complete control. The solution is obvious, and well-known to every official who deals with these issues, but some of them still try to win this argument by smirking and saying stuff like, "That's irresponsible. We can't let severely retarded or mentally ill people, or children, administer their supports!" So for the record, family members, friends, or paid surrogates can do it for them, of course. And, of course, they shouldn't be overregulated either.
Okay, we've treated people with disabilities and elderly people differently for millennia, and some disabilities do involve mental incapacity. So let's go right to the facts about what actually happens when you just give people with disabilities or their surrogates the money they need for support services and let them decide how to spend it. What happens, you ask? They spend it, get the services they need, act responsibly, stay happy and healthy--and they don't sue anybody. That's been the experience of New York's Consumer Directed Personal Assistance program, and of several pilots of even less-restrictive "cash and counseling" programs in several states over the last decade. And that brings us back to New York State and proposals for Medicaid reform.
Ray Meier and other NYS Senators deserve a lot of credit for opening the door to real change with a proposal to test "cash and counseling" in New York. "Cash and counseling" programs give a chunk of money for support services (usually attendants, though with few or no limits on what the attendants do or where they do it), to a person with a disability, train that person (or their surrogate) in how to manage the service, and let them run with it. It's not perfect; participants usually have to file spending reports and may have to submit service plans. That's because it's still Medicaid, and this is about as far as you can stretch that program.
Nearly all truly non-medical disability supports boil down to one of two things: some physical object, or some form of attendant service. We've seen that we don't need to regulate a person's spending for food, clothing, housing, cable TV, cars, furniture, appliances or anything else just because the government foots the bill. Your retired parents and tens of millions of others can't be wrong. And whether you need a ride to work, job training, help making friends, a bath, a reminder to turn off the stove, a catheter inserted, or a meal planned, the answer is a properly trained, supervised, and paid attendant. We've proven that people can effectively hire, train and supervise their own attendants in New York and many other states. Medicaid lets them do it with very little regulation at all, and could do it with even less in a cash-and-counseling model. Every regulation removed from a Medicaid disability support program cuts the cost. There is no sane fiscal, ethical, or legal reason not to apply this model to every non-medical long-term disability support we use. There are only political reasons.
Nobody in New York State government is thinking along these lines--yet. I do believe that it just hasn't occurred to some of them, and once it does, they'll see the huge potential of this idea. As for the rest--we've gotten around them before, and we can do it again.
It's good to see our leaders broadening their horizons to view a wider swath of the disability services landscape. Their eyes are opening; it's our job to make sure they see the big picture.
