Medicaid Reform: Bang for the Buck and the Old Folks at Home

by Ken Dibble

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.

March 2004


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Courts Watch

Raytheon v Hernandez

Joel Hernandez quit his job after a drug test found cocaine in his system. Two years later, after completing a drug-treatment program, he reapplied for his job. His employer refused to hire him on the grounds that they never rehire people who have broken company rules, including the rule against using drugs on the job.

Hernandez sued under the ADA's employment provisions, which outlaw discrimination against people with a history of substance abuse disabilities--but not against people who are actively abusing drugs or alcohol. He got past the 9th. Circuit Court of Appeals but lost in the Supreme Court in a 7-0 ruling (two justices did not take part). Justice Clarence Thomas's decision said the employer refused to rehire Hernandez for a non-discriminatory reason unrelated to disability.

There are some ambiguities in this case. The company did not have a formal written policy against rehiring employees who had broken company rules. A person does not have to be actively under the influence of cocaine to fail a drug test, so Hernandez may not actually have violated the rule at all. Still, advocates were relieved that the decision doesn't further weaken the ADA.

Tennessee v Lane

On January 13, the Supreme Court heard oral arguments in this case, which could break the back of the ADA's Title II prohibition on discrimination due to disability by state governments. We've covered this case in previous issues; it's the one where two people with disabilities--one a criminal defendant, the other a potential court employee--sued the state of Tennessee for failing to make courthouses physically accessible.

The disability community has staged impressive demonstrations in Washington to raise awareness of the case. They didn't impress Justice Scalia, however, whose questions and comments from the bench infuriated advocates. Scalia called people who have disabilities "handicaps" and said that inaccessible government facilities "prove nothing at all." He said the fact that it might be undignified for a person with a disability to have to crawl up the courthouse steps doesn't mean the court should have to install an elevator. The cost of the elevator is a good enough reason not to do it. Chief Justice Rehnquist was said to express agreement.

No matter how irritating Scalia was, what he said should come as no surprise. He and Rehnquist laid out this argument in the Garrett case a few years back. In that decision, the majority said that the discrimination people with disabilities and elderly people face is not as bad as that directed toward women or black people. States have no obligation to bend over backwards to redress historical discrimination against people with disabilities, this argument goes, and as long as they have a "rational" purpose for treating people with disabilities differently, such as cost, it's perfectly all right for them to do so.

There are logical and factual flaws in this argument, to be sure, but it was predictable that it would be repeated in this case. The question now is, will Justice Sandra Day O'Connor stand with that argument? She concurred in the majority Garrett job discrimination decision but was careful to say, in a separate opinion, that she viewed other forms of disability discrimination differently. If she still feels that way, Title II will probably survive. If she doesn't, it will certainly fall, and with it, the Olmstead decision that people with disabilities rely upon to free them from institutional oppression.

Pryor Sneaks In

After civil rights advocates in the US Senate stalled President Bush's appointment of William Pryor to the 11th. Circuit Court of Appeals, Bush used his "recess appointments" power to put Pryor on the bench anyway. Pryor was the Alabama Attorney General who won the Garrett ADA case. He is also on record as opposing other federal civil rights laws' applicability to state governments. He recently angered disability advocates again with a rare petition to the Supreme Court to be allowed to deliver oral arguments against the ADA in Tennessee v Lane. The Supremes denied that request. A recess appointment is allowed by the Constitution when Congress is not in session. Such an appointee can only serve a one year term, so advocates will get another shot at him in 2005, perhaps with a different president in the White

IDEA Awaits Action

The reauthorization process for the federal Individuals with Disabilities Education Act (IDEA) has been stalled throughout the winter. The Senate version is expected to come to the floor for debate and a vote in late March. The debate rules have reportedly already been agreed on. It's expected that amendments will be introduced to require a limit on attorneys' fees, to add more "paperwork reduction" provisions, to provide a funding schedule, to address homeless children, and to "coordinate" developmental disability data. The Democrats and Republicans will also each get to propose one additional amendment "to be named later". After the Senate bill passes, most likely a House-Senate conference committee will be needed to resolve differences between the two versions.

As we've reported previously, the Senate bill, though better than the House version, is still not acceptable to people with disabilities. Under the law, the Part B procedural sections of IDEA being considered by both houses don't have to be reauthorized at all, and some national advocates are now urging that they simply be left alone in the final bill. There is probably a reason why the vote has been put off for so long, and it may be that the bill's backers don't have a solid majority in their favor. A simple and quick bill simply to reauthorize the existing system may well be the result.

However, it would not be wise to take anything for granted; these bills are too dangerous to children with disabilities for that. There is still time contact our Senators about this.

Medicaid Reform: One Big Waiver?

Both the Senate's and the Governor's Medicaid reform advisory groups have published recommendations. There are a lot of them, some pretty technical. A few are included in Governor Pataki's `04-'05 budget proposal (see Pataki's Budget: Penny-Wise, Pound-Foolish...Again.) This article focuses on one idea that's mentioned in the Senate report and described in detail by the Governor's group.

It makes no sense that New Yorkers with certain disabilities can get a broad range of low-cost community-based supports while the rest end up in expensive nursing homes. If you have a developmental disability or a brain injury, a Medicaid waiver will cover not just basic homecare for feeding and bathing and such, but things like assistive technology, making your home accessible, living skills training, or a person to make sure you don't leave the stove on or get lost somewhere. If your disability isn't one of those but you need the same kind of stuff--multiple sclerosis, for example, that's progressing rapidly, or Alzheimer's disease and you're becoming disoriented--you can only get homecare, which is useless if you can't get into your home, and you can't even get the homecare if all you need is someone to keep an eye on you.

Advocates in New York have been trying for years to get a new Medicaid waiver for services for people with physical or cognitive disabilities that aren't covered by other waivers. We've had bills introduced in the legislature but never signed into law. Now the Medicaid reform task forces have picked up this issue, and the Governor's plan goes well beyond this gap-filling waiver idea in some pretty striking ways. In order to understand the proposals and what our options really are, some background information is needed.

A Medicaid waiver is a permission slip from the feds that lets states ignore ("waive") rules when providing Medicaid services. The rules that states usually want to ignore include "statewideness" (to offer the service only to certain regions); strict income eligibility (to make services available based on diagnosis, or to children regardless of family income); "entitlement" (to limit services to a specific number of people); or allowable services (to provide new services that aren't on the traditional menu).

There are two broad types of Medicaid waivers. "Home and Community Based Services" (HCBS) waivers replace institutional custodial "care" with integrated community-based services. These waivers are only for people who would probably be in a Medicaid-funded institution without them. (This is why New York has no HCBS waivers for people with mental illness; the state does not fund its psychiatric hospitals with Medicaid.) The other type lets states apply a managed-care model to all Medicaid services. By definition, Medicaid waivers are cost-neutral--they can't cost more than the services they replace.

Waivers can be good or bad, depending on how they're handled. New York has had enough experience with both kinds to learn how to do them right. But both advisory groups apparently either didn't know about, or ignored, these lessons.

The Department of Health Traumatic Brain Injury (TBI) waiver, despite some flaws, shows how to do HCBS waivers right. It supports people with severe multiple disabilities only in integrated individual residential settings--no group homes--while saving Medicaid, on average, $20,000 a year per person. People on the TBI waiver usually gradually use fewer waiver-funded supports as they get jobs and establish supportive relationships with friends and family. When calculating cost-neutrality, TBI waiver administrators compare the total cost for all waiver participants to what it would have cost to keep them all in institutions. Even if a few individuals cost more to serve on the waiver, the total "aggregate" cost is still lower than that of institutional settings.

OMRDD's HCBS waiver, with "Self Determination", is now more flexible, in theory, than the TBI waiver. Yet OMRDD administers it so badly that the flexibility is lost. Large numbers of participants live in a closed system of segregated group homes and congregate day programs or sheltered workshops. They have little personal freedom or contact with people who aren't paid to serve them, and most never get a job that helps pay their living costs. The average person's waiver "slot" costs less than one in larger institutions for people with developmental disabilities (developmental centers and ICFs), but the state still pays big bucks for each group home "bed" on top of the waiver costs, and most group homes are no less institutional than ICFs. It should satisfy cost-cutters that waivers can cost no more than the services they replace and individual waiver costs decline over time. But OMRDD got greedy with "Self Determination". They figure out what keeping a person in an institution would cost and then chop a big chunk out of that number before services are planned. They often don't even provide all of that smaller amount, citing "lack of funds"--but they'll pay the full, much higher cost for anyone who accepts a segregated setting. People on this waiver often can't get enough attendant-type service because over-regulation and low fees keep attendants from making a living wage. Self Determination was supposed to reduce administrative regulations so more money could go to attendants. But the bean-counters won't let go of the regulations and they cut the available money. Self Determination creates more work for families and they still can't get enough services. OMRDD's intent is to preserve existing institutional settings at all costs, regardless of whether adequate community-based services are provided. This violates the ADA, as defined by the Supreme Court's Olmstead decision.

New York also has a managed care waiver. Most non-institutionalized Medicaid recipients are supposed to be on it, but that hasn't happened. To get it past the legislature, Pataki had to accept a "bill of rights" containing consumer protections. Participants must get a choice of at least two service plans that cover the kinds of services they need, and services must be available within a reasonable distance from their homes. But the law doesn't force managed care companies to offer plans, and the state doesn't pay a lot of money to those that do. Providers can't make a profit by serving rural areas or people with disabilities who use a lot of medical services. So nondisabled Medicaid recipients in most urban areas are in managed care, but in most parts of the state, there is not even one provider, let alone two, that offers plans to people with disabilities.

The Governor's task force has some exciting ideas. Most Medicaid services would be available through one big managed care waiver. Disability diagnosis might not (see below) control what services you get. It wouldn't be a HCBS waiver, so eligibility for institutionalization wouldn't be a factor. Instead, if you met income eligibility rules, you could get any of the available services that you personally need. The service list includes most current "state plan" services, such as doctor visits, hospital stays, drugs and therapies. It also includes all forms of personal assistance services, including Consumer Directed Personal Assistance, and all services now available on the TBI waiver. There would also be support for transition from institutional to community living, and a single point of entry for information and enrollment. This all looks good, but there are two big unanswered questions:

1. Why aren't OMRDD waiver services mentioned? Did the planners intend to serve that group in the new system or do they plan to leave OMRDD's $2 billion+ annual Medicaid budget out of this scenario?

2. Creating a plan like this is the job of the Most Integrated Setting (MIS) Council, which has consumer representation. Why did the task force do an end-run around that process?

Then there's the managed care part. They want to put all SSI-eligible people with disabilities into managed care and ask managed care companies to offer plans to cover long-term-care-related waiver services. They expect this to cut costs, but ignore the fact that managed care companies don't want to serve people with disabilities. Why do they think any companies will come forward with plans? The Senate proposal offers a clue to what could happen. It suggests that the Medicaid managed care bill of rights requirement for a choice of at least two plans be eliminated. The governor's proposal does say that people not in managed care will still get waiver services through another mechanism.

There's a more ominous idea in the Governor's proposal--"right-sizing" nursing homes. The proposal talks about refocusing the Medicaid system on "home and community-based" services, but this plan to provide incentives to nursing home operators to reduce "bed counts" by "upgrading" facilities to meet modern needs and offering "creative" alternatives sounds a lot like group homes. Group homes are not "home and community-based". They are segregated institutions, and they won't cost much less than nursing homes do today. One result of this plan could be a huge injection of corporate welfare, using Medicaid dollars, into the nursing home industry. As happened with OMRDD's NYS-CARES program, we could see new group homes suck up all the long-term care funds, leaving little or none for the vast majority of people who would rather live in their own homes with cost-effective individual supports.

If we're going to subsidize the expensive nursing home and group-home industries instead of replacing them with low-cost integrated individual supports, how do we pay for this new system? The Governor's proposal says the entire plan must be implemented in order for it to work properly without "negative consequences". But parts of their plan include several of the Medicaid cuts that Pataki is proposing for the 2004-05 budget year, and those cuts would have very negative consequences for people with disabilities.

If our leaders really want "one big waiver" to gain real cost savings and real integration, they should go to the MIS Council and work with the consumer representatives there to complete the legally mandated information gathering and planning that body exists to do. We need a plan that brings all the state's long-term care spending into one unified system that aggressively promotes and expands individual home and community-based supports while progressively reducing the use of congregate settings to near-zero levels.

MIS Council Fiddles while Medicaid Burns

The state's Most Integrated Setting Council held its first working meeting on December 17, 2003. OMRDD Commissioner Tom Maul chaired the meeting. Official minutes were not distributed until recently, along with a long-delayed schedule of future meetings. However, an ADAPT observer compiled minutes and provided a copy to STIC.

The meeting discussion was disorganized. The majority of the time was spent talking about various ways in which state agencies already "collaborate" and might do so in the future. OMH, for example, cited how it is successfully "collaborating" with the State Education Department.

There was little mention of the tasks the Council is legally required to carry out: to get accurate data on how many people are segregated unnecessarily, and on how many people need services but aren't getting them; to design a standard single-point-of-entry needs assessment and intake process; to identify service gaps and propose ways to close them; to compile a written plan that contains all of these things.

One person raised the issue of the standardized assessment tool mandated by the law. Maul responded that the Council was required to talk about it but he'd never seen a uniform assessment tool "that works". He said the Council must make sure that what it does is "best for the individual" regardless of what the law says, implying that this required task may not get done.

When the discussion veered toward measuring consumer satisfaction, Maul said that one measure of success would be keeping someone out of "the system". He also repeated frequently that consumer input and satisfaction are very important and that Self Advocates had worked very well with OMRDD in this area.

Analysis of the meeting summary provided by ADAPT gave the following impressions:

The state agency members do not view the Council's task as being about reassessing the state's information about, or response to, service needs. Contrary to the experience of people with multiple disabilities whose needs cross agency boundaries, they seem to believe that existing "interagency collaborations" have a real, positive impact on the quality and availability of services, and that the Council's mandate can be satisfied by creating more such agreements. OMH's citation of its "collaboration" with the State Education Department, which includes VESID, was a good example of this almost dream-like state of belief. In fact, VESID was pretty much blindsided by OMH's PROS program, which, by refusing to accept VESID's need and eligibility determinations, foists financial responsibility for extended supported employment for thousands of people with mental disabilities back onto VESID--which does not have money to serve them--much as OMRDD's switch to HCBS waiver funding for supported work did a year or so ago.

Commissioner Maul seems bent on ignoring the mandate for change implicit in the law and on preventing the Council from completing its required tasks.

The MIS law required a uniform needs assessment and intake process because people with disabilities commonly get information about service options only from segregated program operators, and that information is usually inaccurate or incomplete and heavily biased toward segregated services. Maul's remarks on uniform assessments suggest an interest in protecting those programs and their institutional bias.

Maul's statement that keeping someone out of the system is a sign of success might be viewed as supporting a belief in real integration. However, a government-funded support system is an unavoidable necessity for keeping people with severe disabilities alive and able to participate in society. "The system" does not work nearly as well as it could to provide cost-effective integrated individual supports to people with disabilities without violating their civil rights. People with severe disabilities should not have to choose between a precarious and brief subsistence "out of the system" and oppressively restricted and segregated "safety" within it. Maul is on record as believing that "the system" has no significant problems that the MIS Council needs to solve. His agency has taken several eligibility narrowing steps in recent years whose effect has been to deny supports to people whose severe physical disabilities do not affect their ability to speak assertively and eloquently about the need to radically reform "the system".

Maul's repeated remarks in support of consumer satisfaction input from Self Advocates should be viewed with caution. "Self Advocates" is not a generic term for "consumers of disability services", it is a reference to a specific organization that is largely funded by OMRDD. This organization boasts that it is "part of the system." Maul doesn't have a strong record of positively responding to the input of people with disabilities or advocates who aren't associated with that organization.

NYS Disability Budget and Policy Coalition Legislative Agenda for FY 2004

by DBPC Members

This article summarizes the five top priority issues in the DBPC Legislative Agenda. STIC is represented on the DBPC Steering Committee that prepared the agenda.

The mission of the nonpartisan New York State Disability Budget and Policy Coalition (DBPC) is to work together to meet the needs of individuals with disabilities and their family members. Our focus is on cross-disability issues that foster greater community integration, promote consumer control and choice and empower people of all ages and disabilities to realize their dreams of inclusion and independence. We seek enactment of legislation and/or budgetary initiatives that will support and advance these goals.

"Most Integrated Setting" Medicaid Waiver Program

New York State should establish a Medicaid waiver to allow people with disabilities of any age currently not eligible for any existing Medicaid waivers to be served in the most integrated settings appropriate to their needs. The waiver would fund housing modifications, assistive technology devices and services, transition services, and personal assistance ("homecare") services. Essential features would include: ability to terminate case management/service coordination once the person is stabilized in their own home with appropriate services; a choice of either consumer directed or traditional personal assistance services; inclusion of people who need safety monitoring or supervision due to a cognitive disability such as Alzheimer's disease; one-time costs of setting up a household, including furniture, utility and security deposits, and moving costs.

Personal care services should be equally accessible regardless of whether the individual's need is caused by a cognitive impairment or a physical impairment. The State Department of Health and various local Medicaid districts have wrongfully chosen to deny personal care services needed by people with Alzheimer's disease and other cognitive impairments. Senior citizens with Alzheimer's should not be subjected to the indignity of forced institutionalization when they could remain in their own homes surrounded by the love and support of family and friends.

  • Establish a Medicaid waiver program to allow people with disabilities of any age currently not eligible for any existing Medicaid waivers to be served in the most integrated settings appropriate to their needs.

  • Personal care services provided through the Medicaid waiver program must be equally accessible regardless of whether an individual's need is caused by a cognitive impairment or a physical impairment.

Waive State Sovereign Immunity to ADA and Section 504 Claims

The US Supreme Court decided in February 2001 that states are immune from claims brought under Title I of the Americans with Disabilities Act (ADA) by state employees with disabilities who have been subjected to illegal discrimination. Other courts have since found that states are immune from claims under Title II of the ADA, which covers all activities of state and local government, and under Section 504 of the Rehabilitation Act, which prohibits discrimination on the basis of disability by recipients of federal funds. Although New York State and its agencies have previously been found by courts to have violated the rights of New Yorkers under the ADA and Section 504, millions of disabled New Yorkers can no longer seek redress for such violations.

  • Waive New York State's sovereign immunity to claims brought against it under the ADA and Section 504 of the Rehabilitation Act.

Incorporate ADA Titles II and III into NYS Human Rights Law

The New York State Human Rights Law includes some, but not all, of the ADA's protections, causing needless confusion for government officials in attempting to comply with both statutes. Conforming the state statute to the ADA will clarify the obligations of government officials to take reasonable steps to ensure that their services, programs and activities are available to constituents with disabilities. Incorporating Titles II and III of the ADA into the NYS Human Rights Law will impose no new or additional requirements upon local governments, since local governments are already responsible for complying with the provisions of the ADA.

Title II prohibits discrimination on the basis of disability by public entities and certain transportation providers. State and local governments are required to make reasonable modifications to their policies, practices, and procedures that deny equal access to people with disabilities. State and local governments must ensure the program accessibility of their facilities. Existing buildings need not be fully accessible, but their programs must be. Public entities must furnish auxiliary aids and services when necessary to ensure effective communication and may not place a special charge to cover the costs. They may not refuse people with disabilities the right to participate in a service, program, or activity and must maintain these offerings in an integrated setting.

Title III covers the accessibility of public accommodations such as retail stores, restaurants, theaters, etc. Public accommodations must make any modifications that are readily achievable (i.e. easy and inexpensive) to allow people with disabilities the opportunity for equal use of goods or services offered.

  • Incorporate Title II of the ADA into the New York State Human Rights Law.

  • Incorporate Title III of the ADA into the New York State Human Rights Law.

Consolidation of Supported Employment Programs for People with Disabilities

67% of people with disabilities are unemployed and therefore dependent on government-funded income supports. New York must make better use of programs that can reduce such dependence.

Supported Employment (SE) programs do this for people with disabilities by providing concrete supports for finding and retaining jobs. However, New York's administration of these programs is inefficient and redundant. Depending on the disability, SE services are available through VESID, CBVH, OMH and OMRDD. Each agency has its own set of regulations, definitions of disability, and documentation requirements, which often conflict with one another, resulting in confusion and unnecessary duplicative paperwork for providers. Additionally, each state agency conducts its own fiscal and programmatic reviews and audits, wasting a great deal of time and resources of the state and provider agencies. New York should consolidate all supported employment programs under VESID, with involvement of consumers, advocates and providers. This would establish one set of regulations and requirements for all disability groups and streamline administration and service delivery, producing significant savings that would free-up funds for much needed direct services for consumers. VESID has the most expertise in providing SE services to people with a wide variety of disabilities, and is the most logical choice to house these programs.

New York's funding priorities for sheltered vs. supported employment also increase state spending by promoting, rather than discouraging, dependence. NY funds sheltered work services for individuals at twice the rate it pays for supported work, creating an incentive to keep people with disabilities in segregated workshops (which often pay sub-minimum wage) rather than transitioning them to integrated jobs that pay competitive wages high enough to enable people with disabilities to reduce their support on government services and become productive taxpayers. Many sheltered employment programs have tried to transition from segregated services to integrated/competitive options. While their philosophies and policies have shifted, the funding mechanism has not changed, forcing them to maintain their better-funded segregated programs in order to survive. New York State should allow funds to follow consumers from segregated to integrated/competitive employment opportunities, creating incentives and adequate resources to serve New Yorkers with the most significant supported employment needs.

  • Consolidate all supported employment programs for people with disabilities under VESID, with significant involvement of consumers, advocates and providers.

  • Allow funds to follow consumers from segregated to integrated/competitive employment opportunities.

Election Reform

On Election Day 1999, New York State Attorney General Eliot Spitzer and local advocates evaluated the accessibility of polling places statewide, finding deficiencies in almost every county. More recent surveys indicated that these problems persist across much of the state.

During the last presidential election, we learned that every vote truly does matter. The federal Help America Vote Act of 2002 (HAVA, or "The Act") provides potential solutions to many of the problems that people with disabilities seeking to exercise their right to vote have long endured. For years, many disabled Americans could only use absentee ballots because of the inaccessibility of their local polling sites and voting machines. Absentee ballots are not an acceptable alternative to a reliable, fair, verifiable and accessible system for voting at the polls.

New York must fully use the opportunity that the Help America Vote Act presents, and improve upon its provisions by ensuring that any New Yorker with a disability is afforded the use of an accessible machine by August 31, 2004. Such machine must provide the opportunity for all to vote independently and confidentially as mandated by HAVA. Accessible voting equipment must meet or exceed Federal Election Commission standards for accessibility and any new standard that may be adopted in the future.

New York must also eliminate the requirement for a "full face ballot" so that election authorities have more options in choosing accessible voting systems and so that individuals who, due to their disability, find it difficult or impossible to vote on the full-face format will have an equal opportunity to vote independently and confidentially.

  • Ensure that New York conforms to all the provisions of the Help America Vote Act (HAVA) and takes full advantage of all federal funding available for machine modernization, voter and poll worker education, a statewide registration system, and improved provisional voting systems.

  • Implement the access recommendations in the New York State Task Force on Election Modernization report, Voting in New York in the 21st Century.

  • Eliminate the "full face ballot" requirement so that more of the modern voting machines will comply with State requirements.

  • Eliminate the fee for non-driver's identification cards.

  • Adopt the Human Rights Law definition of disability and waive the time limits on voting for people with disabilities and the elderly.

  • Eliminate the possibility of a waiver of polling site accessibility.

Pataki's Budget: Penny-Wise, Pound-Foolish...Again

While Governor Pataki's Medicaid reform task force made many recommendations, only some of them--mostly the worst ones--are in his 2004-05 budget proposal. We don't know what he plans to do with the rest of them, some of which are discussed in Medicaid Reform: One Big Waiver?.

The best idea in the Governor's budget proposal is eliminating a special rate add-on for nursing homes with more than 300 beds. We should never encourage the creation or maintenance of large nursing homes, so this gets an unqualified thumbs up.

A potentially very good idea is Pataki's proposal for the state to gradually take on the counties' share of Medicaid costs over 10 years. The county share has caused rapid growth of property taxes. It's also been an excuse for counties to violate the federal Medicaid law's "statewideness" rule with locally-varying caps on homecare services. We think the county share should be ended. In order to do it, though, the state has to find the money elsewhere, and the ideas Pataki has for that are very bad news.

Some of them are familiar; he's tried them before but couldn't get them past the legislature. This year, though, both houses' leaders say they don't want to raise "taxes" like they did last year--by which they mean, they don't want to raise state income taxes; it's likely you'll see increased special-purpose "fees", "levies" and "surcharges" in the final budget. Any time you pay money to the government in return for a service, it's a tax. Unlike the state income tax, which is "progressive", meaning the more you earn, the more you pay, these other taxes are usually "regressive". That is, the cost falls more heavily on poor people. For example, you'll pay the same vehicle registration fee for your 2000 Ford Taurus whether your annual income is $25,000 or $250,000.

The harm done by Pataki's proposed cuts will also be borne pretty much by low-income people. What are these cuts? Just more of the same penny-wise-pound-foolishness we keep hearing from politicians who can't see beyond the ends of their noses, which always seem to be jammed up against specific line items in the current year's budget.

First, he wants to end Medicaid funding for several important services for adults, such as dentistry, podiatry, nursing and more. When people need these services and can't get them, they get sicker and end up in hospitals, where treating them is much more costly.

Next, he wants to apply co-pays and caps to some Early Intervention services for infants and toddlers with disabilities. Many low- and moderate-income families won't be able to afford these services, which are designed to make kids as independent as possible and actually cut the costs of supporting their needs over their lifetimes.

Here's a nasty one: Many children with disabilities receive SSI, a monthly cash subsidy that comes mostly from the federal Social Security Administration (New York adds a few dollars to it). This money helps families pay the extra costs of medication, transportation, equipment and treatment for children with significant disabilities. The families who need this assistance the most are the poorest and most likely to be on welfare. But Pataki wants to cut welfare benefits to families with children who get SSI. This will force families to choose between medicine and food for their kids. The kids will need more medical care, not less, and the state will pay more for it in emergency rooms, hospitals and long term care.

Pataki wants a "preferred drug program" to severely limit the variety of drugs that Medicaid will pay for. In most cases, there would only be one allowable drug per "class" of drugs used for a specific purpose. The proposal exempts psychotropic drugs for people with mental illness. However, there are a lot of cases where different drugs in the same class work better for certain people. Anti-seizure medications is one example, and there are others. More people will be sicker, and overall Medicaid treatment costs will rise.

He wants to raise Medicaid drug co-payments to $1.00 for generics and $3.00 for brand-name drugs, up to a total of $150 in co-pays per year. This is not chump-change for families on welfare whose cash assistance has just been cut because their kid gets SSI. The less needed medicine a kid gets, the more expensive hospital services s/he will use.

He wants to increase homecare cost-savings targets in certain downstate counties where his campaign contributors run nursing homes. These targets require those counties to cut homecare services, which forces more people into much more expensive nursing homes.

He wants a .07% "assessment" (tax) on homecare "revenue" (fees paid to agencies by New York State to provide homecare services). This may be illegal under federal law. The federal Centers for Medicare and Medicaid Services (CMS) are cracking down on states that use fancy bookkeeping to overbill for Medicaid. These states earmark a chunk of state money for Medicaid services and bill the feds for a matching share. They pay the combined funds to providers, but then make those providers pay back some of the money to the state as "surcharges" or "assessments". Some of the payback is federal Medicaid money, but the states apply it to their share of Medicaid funding. In short, the state uses part of the federal share to pay part of its own share, so after the money is spent, the state has received more federal Medicaid dollars than it's legally entitled to. States call this "Medicaid maximization". Recently CMS has begun using another word for it: "abuse".

The ugliest proposed Medicaid cuts involve applying a marriage penalty to people who need homecare. Medicaid is for low-income people; the idea is that people with good incomes should pay whatever medical expenses they can before the government chips in. This is all well and good, but the system should not force people into destitution or make the most expensive forms of long-term care more attractive than cheaper ones.

If you're married and your spouse plans to go into a nursing home, Medicaid lets you shelter some income and assets so you won't lose your home while Medicaid pays your spouse's nursing home costs. This "spousal impoverishment" shelter isn't available to people whose spouses opt for homecare. Instead, there's a rule called "spousal refusal": If your spouse wants homecare, the law lets you refuse to pay his/her medical expenses, making your spouse eligible for Medicaid, and you can keep your house and enough income to live in and maintain it. In practice, it does the same thing as the "spousal impoverishment" shelter. However, Pataki wants to eliminate spousal refusal for people getting homecare and put them in a worse financial position than people who go into nursing homes. This will force people into nursing homes who would not have gone there before. On average, nursing home services cost about 5 times as much as homecare services for the same person. So this will cost more Medicaid dollars than it will save. But there's more; you're going to see a lot of married couples who can't stomach a nursing home getting "divorces of convenience" to avoid them.

And it's worse than that. Pataki also wants to make it much harder for people to transfer their assets to other people in order to qualify for Medicaid. Many people think this is a shady practice, but here's the problem: Until recently, long-term care insurance that covered homecare as well as nursing homes didn't exist. Now that it does exist, it's often very expensive--around $300-$400 a month. Ordinary private health insurance does not cover long-term care of any kind. It would be fair to ask people with moderate resources to pay a moderate fee for homecare--but that's not an option. The out-of-pocket costs for homecare or long-term care insurance are often too much for middle-income families to pay. Their only option is to become poor enough to get Medicaid. Many people justifiably say, "I may have to give up my money in this unfair system, but there's no way I'm giving it to the government that designed it." This is not an issue for people of working age; they can enroll in the Medicaid Buy-In. But retirees should not have to go into the poorhouse in order to get long-term care. It also makes no fiscal sense to force a younger family member to quit working (and paying income taxes) in order to provide care to another family member who can't get Medicaid because s/he isn't dirt-poor.

We aren't saying rich people should get Medicaid. A better way would be to let retirees pay a sliding-scale premium for Medicaid long-term care. Look at income and assets after taxes but before applying any shelters or asset transfers. Set a generous threshold amount that the person needs to maintain their current home and live comfortably in it. Any difference between that amount and the person's annual retirement income would be paid in premiums, up to 100% of the cost of the care received. Wealthy people could transfer their assets but would be treated as though they had not, so most of them would probably just hire their own attendants instead.

Pataki is also proposing cuts to other disability supports and services.

Surprisingly, he only wants to cut a little over $500,000 from CILs like STIC this year; usually he chops out over $1 million before the legislature puts it back. He also want to cut the usual $2 million from VESID--also likely to get put back.

He wants to cut $7.7 million out of local employment, counseling, and other programs for adults and children with mental health disabilities--though he also wants to revive the Community Mental Health Reinvestment Act by closing psych centers and giving the resulting $3.2 million to similar programs. That's not bad, but it's still a net $4.5 million cut in services that enable people with mental illnesses to be self-supporting taxpayers. Meanwhile, the state Office of Mental Health keeps pushing its "PROS" plans to over-inflate the costs of such programs by making them switch to a medical model so it can fund them with the same Medicaid that our leaders say we're spending too much on.

It's hard to dig this year's proposals out of OMRDD's vague budget briefing booklet, padded as it is with self-congratulatory rhetoric. Usually any item not clearly described as "fully funded" or "increased" in that document gets cut. So, it appears that OMRDD will continue to emphasize segregated congregate programs while tossing a bone to integrated individual supports that keeps shrinking in proportion to the total budget. Most programs get cost-of-living raises, but the only HCBS waiver service that will serve more people is extended supported employment. All new residential and day program "slots" are funded under NYS CARES II. While that program will serve new people in 2004-05, almost all of them will be in OMRDD's closed system of group homes and day programs. OMRDD will say these people got the services "they were looking for". In fact, many were looking for integrated, individualized services but were told this was all they could get, and it was better than nothing. OMRDD will also expand its shameful practice of herding children into group homes instead of providing the supports that families need to stay together. The total developmental center census will drop by about 100 people to around 500--but another 40 or so people will be locked up in "special behavioral" institutions.


What You Don't Know May Kill You: DNRs and Health Care Proxies

by Randy Rosenkranz

Some people may be a little confused about Do-Not-Resuscitate (DNR) orders and health care proxies and what they involve. In this article we will try to give insight into both.

Let's first take a look at DNR orders. A DNR order tells medical personnel not to perform Cardio Pulmonary Resuscitation (CPR). This means that doctors, nurses and emergency medical personnel will not attempt CPR on a person with such an order if they stop breathing or their heart stops. DNR orders should only be issued when people are terminally ill or when CPR would cause more damage to a person's medical state. In many cases the people would rather be cared for without aggressive efforts at resuscitation upon their death.

Any adult can request a DNR order from their physician. A DNR order can be put in place for a child with the consent of the child's parent or guardian. If the child is old enough to understand what is going on, their consent is also needed. It is always best to discuss things with your physician to help assure your wishes will be known. A DNR order does not affect any other treatments besides CPR. Your physician must honor your wishes for a DNR order or transfer your care to a doctor who will. From what this writer has found, DNR orders are medically and ethically appropriate only under certain circumstances, when CPR offers more burdens than benefits.

A DNR order can be removed by the person who ordered it, or by anyone who consents to such an order for a person, by telling their doctor or nurses of their decision to revoke the order. When being transferred from institutions such as nursing homes and hospitals DNR orders stay in effect. DNR orders stay in place until a doctor examines you to decide whether it should remain in place or be cancelled. If a doctor cancels a DNR order the person who ordered it or the persons acting on their behalf will be notified and can ask that the DNR order be reinstated.

There are different types of DNR orders. Orders that would apply in a nursing home or hospital would not apply at home. The person(s) and their health care provider must specifically consent to a home DNR order. If someone is at home and they have a DNR order this must be shown to emergency personnel in order for them not to try to resuscitate the person or transport them to a hospital for CPR.

Now let's talk about Health Care Proxies. Under New York's health care proxy law, any competent person can authorize another person, most times family members, to make health care decisions, if the person becomes unable to do so. Filling out the standard health care proxy form can do this. A health care proxy is better than a DNR order, I feel, because it is more thorough. Not only does a health care proxy allow you to appoint an agent who is designated to make decisions for you; it lets you note any specific decisions that you would want the designated person to make.

Without a health care proxy a person's doctor may be required to provide that person with medical treatments that they would have refused if able to do so. Even if that person has a DNR order, that only eliminates CPR, not other treatments such as artificial nutrition or hydration if the person is in a coma with no hope of recovery, or is terminally ill.

A health care proxy does not become effective until a person is unable to make decisions; a physician would determine this. They can be revoked orally and any competent person has the right to sign a new health care proxy. A health care proxy is different from a power of attorney. A power of attorney is for the designation of financial matters for a person. It cannot be used to make medical decisions. Health care proxies and living wills also differ in the fact that with a health care proxy there is someone appointed to make decisions that were not anticipated at the time of completion of the living will.

Most states interrupt advance directives, no matter if they are health care proxies or living wills, very specifically. So it is best to cover oneself for any possible circumstances in which one might find oneself concerning health issues. If a person has a health proxy that does not precisely fit the situation, it may be considered inapplicable, making it seem like one never had an advance directive to begin with. For example, suppose someone had a health care proxy that read, "If I am ever terminally ill and there is no hope of a cure, I want all medical intervention to be terminated." Then the person ends up in a coma from a head injury. A coma is not a terminal illness, so this person's health care proxy would be deemed inapplicable. (Editor's note: People can and do recover from very long-term comas. And "coma" doesn't always mean the person is completely unconscious. There are several stages of coma; in some of them the person is able to communicate. People should not assume that being in a coma is a reason to end one's life.)

The best type of advance medical directive is one that specifically expresses one's wishes regarding medical treatments in case illness prevents them from communicating such wishes directly. They should make sure their wishes are applied to other situations that may develop besides illness. When a health care proxy is properly thought out and written, most practitioners believe that these are the best advance directives to use. Many times there are circumstances that will call for certain procedures. With a health care proxy, you appoint an agent and the agent will be the one who will make the decision for you.

When appointing an agent it is very important to choose someone that you trust. This should be someone who shares your values and who you know will be able to make the decisions necessary to carry out your wishes. It is also good to have an alternate agent if possible, in case the first agent is unavailable or unable to perform their duties when necessary. The most important information for your healthcare agent to know is under what circumstances would you want to be kept alive and under what circumstances the agent should say, "Enough is enough. This is not the quality of life that my sister/brother/mother would want." It is important that the person talk with their whole family about the subjects at hand, not just their agent. The person should keep as many copies of the form in as many places as possible. One of the main reasons for this is that when a person arrives in an emergency room, certain measures have been instituted as soon as that person arrives there. Many times only afterward does someone show up with a copy of a health care proxy, and it is found that the person in question may not have wanted to be intubated or or to be artificially fed.

All hospitals, nursing homes, doctors and other health care providers are legally required to honor the decisions of your agent, and to provide to your agent the same information that they would provide directly to you. (Editor's note: Medicaid regulations require hospitals to inform you of your right to sign a DNR every time you seek treatment, and many hospitals and nursing homes will do this for all patients. However, no hospital or nursing home employee should urge or pressure anyone to sign a DNR, and if you or a loved one have been pressured to do so, you should file a complaint with the facility's administration.)

It is also important to note that there must be two witnesses to sign the health care proxy, and your agent cannot be either of those witnesses.

I hope this article has enlightened readers about the differences between DNR orders and health care proxies, and which is the best for their lifestyle or situation. For more information on such matters, one can contact their physician or their local health department.


Advocacy Services Expand

by Randy Rosenkranz

I have been a STIC consumer for some time, and now I have become a member of the team. My position is that of Disability Rights Advocate. Some of my responsibilities will be to advocate for the rights of people with disabilities, which would include researching the laws and regulations and the preparation of documents to support issues. I will also keep apprised of changes applicable to disability-related laws and regulations and keep consumers, STIC staff and others appropriately aware of such. And I will provide testimony on how changes in laws and regulations may affect people with disabilities.

I have an Associates degree in paralegal, and some work experience in that area. In October 2003 I earned my Bachelor of Science in human and community services, with a concentration in advocacy. I look forward to working with everyone at STIC.

Annual Campaign: Park Closer and Feel Better!

Right now we're at $5,286. We need less than $715 to meet our goal of $6,000. That's so close! You can help put us over the top. Every dollar goes to renovating our new building with its huge parking lots. If you're tired of parking down the block and walking to get to our offices, here's something you can do about it! Mail in your tax-deductible donation today. If you don't still have the form and envelope we sent you, please write "Annual Campaign" on the memo line of your check. If you say so, we'll put your name right here like the good folks below.

Bud Beam
Mr. & Mrs. Marsh MacMillan

Housing? Accessible? Adaptable? and Affordable?

by Stacy Richards

STIC has received a one year Community Development Grant to assist people with disabilities and their families in finding accessible, adaptable and affordable housing in the city of Binghamton. If you are an individual or family member in need of assistance please contact me at STIC, my hours are Monday through Friday, 9 am - 2 pm.

I am currently compiling a database of affordable accessible housing. If you are a landlord, business, or consumer and would like to be added to the list or want more information, please contact me.

Stacy Richards
(607) 724-2111 (voice/TTY)

Requesting Donations of Used Cellular Phones

by Jennifer Grove

The TRAID (Technology Related Assistance for Individuals) Project at the Southern Tier Independence Center is calling for donations of used cellular phones. There has recently been a high demand for cellular phones with the capacity to dial 911. There are many individuals who would benefit from having a portable phone that will dial 911 without having to pay for phone activation or continued phone service. Used cellular phones that have been activated in the past, but no longer have activated phone service, can still be used to dial 911, as long as their batteries are charged. For many people with disabilities, the possession of a cellular phone that can dial 911 would increase both their safety and security. We're requesting donations of used cellular phones in order to donate them to individuals with disabilities. The ability to travel through the community with the security of reaching assistance if necessary will be beneficial to individuals with disabilities and their families.

For further information contact Jennifer Grove, Assistive Technology Coordinator:

(607) 724-2111 (voice/TTY), or

Thank You Realtors!

The Realtors for Good Deeds staged their 3rd. Annual Team Trivia fundraiser to benefit STIC! The event took place at the Kalurah Shrine Center in Endicott on February 28.

Thanks to the Realtors, and to:
Catalog of Homes
Cline's Catering
DRB Appraisal Services, LLC
Professional Home Inspection Service
Frederic R. Xlander, Attorney at Law

Making Your Last Wishes Known

Deborah Totten, Assistant Director Action for Older Persons

*Advance Health Directives
*Living Wills
*Durable Powers of Attorney

Every attendee will receive a workbook that, when completed, will be your Final Wishes document.

April 20, 2004 2:00 pm STIC's New Building Corner of Grant & Ely Streets Binghamton

Plenty of free parking!

To Register: 724-2111 (voice/TTY)


D.E.A.F. Meeting Schedule

Every 3rd Thursday of the Month

5:30 pm Social Time, 6:00 pm Meeting

March 18
April 15
May 20
June 17

STIC 4th Floor

Twists & Turns

A One Day Conference about Disabilities for
Professionals, School Staff, Family Members
and People with Disabilities

May 18, 2004
8:30 am - 3:30 pm
Holiday Inn
Liverpool, NY

Speakers Include:

Angela Novak Amado, Ph.D. Executive Director,
Human Services Research and
Development Center
St. Paul, MN

Timothy J. Feeney, Ph.D. Director,
Wildwood Institute
Schenectady, NY

10 Workshops! Trade Show!

Sponsored by Exceptional Family Resources

Nicole Janer
(315) 478-1462 x. 313


For Sale: 1992 Chevrolet G20 van, 61,000 miles, GC, handicap accessible/driveable (from wheelchair or removable seat), hand controls, lift, AC, power- (tilt) steering, brakes, locks, windows and seats (rear converts to bed), AM/FM cassette, CB, more. Call (607) 363-7721, $4,500.

Wanted: Looking for someone interested in selling an Outboard Voice Synthesizer for a computer that works with most screen-reading software. Contact Jenn Grove (607) 724-2111.


Spring 2004
Issue No. 74