AccessAbility

by Ken Dibble

Apparently the New York State Department of Health (DOH)'s politically-influenced tolerance of abuse and neglect at the Northeast Center for Special Care (see AccessAbility, Fall 2001) is just the tip of a vast iceberg. This spring the New York Times exposed horrendous widespread neglect and abuse of people with mental health disabilities living in privately-operated "adult homes" that are overseen by DOH. The Village Voice reported that adult-home-industry lobbyists with financial ties to Governor Pataki and the Republican party are serving as highly-paid DOH officials. Pataki has responded to the worst episode of systematic institutional abuse and neglect since Willowbrook in the early 1970s with a proposed bill that would increase oversight of these facilities but does not address the fatally-flawed concept behind them.

Many people, when they hear the term "adult home", imagine a home-like atmosphere for a few people with disabilities living at one address and receiving individualized supports and assistance. In fact, the adult homes in New York City that were the subject of the Times expos, are huge warehouses ranging in size from 60 to over 350 beds. In many of them, two or three people live in each room with no reliably-provided support or assistance; when provided, such supports rarely go beyond basic room, board, and medication.

In its exhaustive, year-long investigation, the Times found that adult homes are typically extremely understaffed and what staff they have are untrained, unskilled workers making little more than minimum wage. There do not appear to be many enforced requirements concerning supports and services for the residents. As a result, they often have nothing better to do than sit in their rooms, wander the halls, or brawl violently with each other. Most do not receive assistance to work or volunteer in the community, learn new skills, or develop integrated social lives. Many whose symptoms could be significantly improved with modern medications, peer support, and psychosocial treatment apparently do not receive any regular services at all. It is common for residents to experience uncontrolled seizures, outbreaks of paranoid delusion, or paralyzing depression without any intervention or even regular observation by staff. Adult home residents die at an appallingly high rate, but the circumstances--or even the simple fact--of those deaths are rarely reported to DOH. When they are, DOH typically does not investigate. Despite a 1994 law requiring adult homes to report deaths, out of nearly 1,000 deaths over 6 years that the Times documented, only three appeared in DOH records. Some of these deaths are due to natural causes, but many more result from overheating, suicide, or easily-treatable illness or injury. The bodies may not be discovered by facility staff for hours or days, and are buried in paupers' graves marked only by numbers. These journalistic findings were foreshadowed by reports issued by the NYS Comptroller and the state Commission on Quality of Care that state officials ignored. When confronted by the Times reporter, DOH officials promised to issue specific regulations informing adult home operators that the death notification law must be obeyed. Seven weeks later, no such regulation had been issued.

Here are just a few examples of what the Times found:

Research conducted by New York State indicates that people with psychiatric disabilities are twice as likely to die during heat waves as members of the general population. This is because their medications often reduce their ability to sense heat or to sweat, and those with severe symptoms are less likely to take precautions such as drinking more fluids. However, there is no requirement that adult homes in New York City, where summer temperatures can reach the upper 90s or higher for days at a time, be air conditioned. In one incident, a resident in a top floor room died of overheating because the facility's staff refused to check on her; they said it was too hot for them to go up there. In July 1999, 17 adult home residents died of overheating alone.

Another resident experienced heart attack symptoms, including chest pain and shortness of breath, for over 48 hours. She complained repeatedly and was examined by both a nurse and a physician, both of whom misdiagnosed her symptoms as "anxiety". She called her sister, told her that she thought she was having a heart attack, and that the staff were ignoring her. Her sister called the home and the staff told her the resident was fine. The next morning she was found dead on the floor of her room; the autopsy showed heart failure.

In one home, a man with a history of violent attacks (he had stabbed and beaten up several members of his family) lived in a tiny room with two roommates, both of whom he repeatedly threatened with knives. The man's dangerous behavior was well-known by the staff, who were afraid to deal with him. His behavior and threats were documented by various psychiatrists who treated him for short periods but apparently had no ongoing responsibility for his care. One day he stabbed one of his roommates 20 Times in the chest and neck, killing him. The roommate usually called his mother twice a day. When he missed the first call, she called the home to check on him and was told everything was fine. When he missed the second call, she went to the home but the staff wouldn't let her in. It wasn't until much later that night that the police told her that her son had been murdered.

The Times also found several cases of people who killed themselves, many by jumping out of facility windows or off roofs, whose suicide threats had received no special attention and whose deaths were not investigated. Residents were frequently seen unbathed, naked, and/or immobilized by psychosis or depression and sitting in their own wastes. One staff person whose job was to dispense medication was found to be nearly illiterate.

A lot of this information came from deficiency reports filed by DOH inspectors. While the operators of a couple of homes were forced to sell the facilities to new owners and get out of the industry, it appears that in most cases no significant follow-up or enforcement measures to address these deficiencies were undertaken.

Following the Times expose, the Village Voice ran its own investigation of the politics of adult-home regulation. They found that in the late 1990s, the Empire State Association of Adult Homes and Assisted Living Facilities (ESAAHALF) was paying $150,000 a year for the lobbying services of Coppola, Ryan & McHugh. This was one of the top ten largest lobbying contracts in the state in 1997. The wife of the firm's Patrick McHugh is Martha McHugh, a former Director of Scheduling for Pataki, and now the DOH Assistant Commissioner for Intergovernmental Affairs; she makes $104,000 per year. Patrick McHugh's brother is Republican Congressman John McHugh, but in a possible indication of moral character, when interviewed by a Voice reporter, Patrick denied any relation to the Congressman and said he didn't know when his wife started working at DOH. The Voice also found that a former Executive Director of the McHugh lobbying firm, Susan Peerless, now gets $97,000 a year as a special assistant to DOH Commissioner Antonia Novello for "long-term care and advising on adult home matters". Peerless had earlier served on a Pataki-created task force to evaluate long-term care financing. The Voice reported, "Sources with firsthand knowledge of the Empire State's lobbying pitch say its primary message was simply: `Leave us alone.'" McHugh and other members of his firm have donated almost $18,000 to Pataki's campaigns and state Republican committees since 1995. ESAAHALF itself has made some $31,000 in contributions to Republican organizations. The association fired McHugh's firm in 2001 and hired two other lobbyists, one of which donated $68,000 to Republicans. The other has given $25,000 to Democratic Assembly Speaker Sheldon Silver's campaigns.

Although the state Comptroller reported in 1999 that New York's system for monitoring adult care homes was broken, and disability advocates have been criticizing the facilities for much longer than that, the Pataki Administration took no significant action until the Times began its 4-day front-page expose in April. On April 26 the Governor issued a press release announcing a proposed bill to address the problem. The bill would make it illegal for hospitals, nursing homes, and state institutions to release or refer people to adult homes that have been cited for serious and uncorrected violations affecting health, safety or welfare, or that do not have valid operating certificates. State agencies including OMH and OMRDD would have an additional responsibility to document that any such facility to whom a person is being released is able to provide services consistent with the person's needs. The maximum fine per single violation would be raised from $1,000 to $5,000, and a repeat violation within 2 years would carry a $10,000 fine. Facilities would no longer be able to escape fines by correcting problems within 30 days. Lists of cited facilities would be widely distributed to agencies and made public on the internet. The bill would attempt to beef up adult home monitoring by providing for "dedicated" staff to conduct unannounced visits and reviews; however, the press release did not mention any new funding, so it is unclear whether these "dedicated" staff would represent a real increase in monitoring activity. The press release also mentioned measures to improve medication management, provide more services to assist people with mental health disabilities to become more independent, and to increase consumer participation in the operation and oversight of adult homes. Again, however, no new funding for these measures was mentioned. Some disability advocates responded positively to this proposal.

STIC agrees that these are positive steps, but they fall woefully short of an appropriate solution to the problem. The problem is the very existence of these human warehouses. It has been repeatedly demonstrated that people with mental health disabilities respond well to effective individualized, peer-based integrated community supports. In these programs, people with severe mental illness and histories of non-cooperation with medication regimes have flourished--getting jobs, forming lasting social bonds, and achieving much greater levels of independence. Huge institutions, even with better monitoring and some more services, will never achieve these kinds of results. New York State blew its opportunity to create a high-quality community-based mental health system when it transferred money saved from its historic closures of psychiatric centers to the general fund and spent it on such things as education aid to wealthy school districts, multi-million-dollar pork-barrel projects like sports stadiums and cheese museums, and corporate welfare. It is time for New York's leaders to acknowledge that this policy was wrong, and reverse it. The Willowbrook scandal forced our state to accept responsibility not just to feed and house people with developmental disabilities, but to make strong efforts to improve their lives. The Willowbrook response was not perfect; it has made it hard to flexibly address the individual needs of "Willowbrook Class" members. But the principle of responsibility for providing high-quality services must be extended to people with mental health disabilities. Nor will much new funding be required. The Times reported that New York spends an average of $40,000 annually to keep a person in an adult care home. For that money, the state could rent a nice apartment and cover most of the cost of appropriate individualized supports for each of those inmates. A band-aid approach to fixing a corrupt and fundamentally segregated and inhumane service system is unacceptable. New York should adopt a phased plan to close all congregate facilities for people with mental health disabilities, including adult care homes, and transfer all of the money to peer-based individualized, integrated support services.

Both the House and Senate have passed election reform bills that create minimum standards for how states and localities must conduct federal elections. The Senate version is much more specific on disability access than the House bill, but it also has some serious problems.

The Senate bill requires that all voters be able to review and change their voting choices before committing them. It also requires that voters whose eligibility is in dispute must be allowed to cast "provisional" ballots on election day; if it is later found that a voter is not eligible, his/her ballot would not be counted. The Senate's accessibility provisions include: at least one accessible voting machine in every polling place, fully paid-for with federal funds, by 2007; people with disabilities, including those who are blind, must be able to cast secret ballots (which implies that voting machines as well as voting booths must be fully accessible); the federal Access Board will set voting access standards; $100 million (80% federal, 20% state) will be made available to make polling places accessible; the federal disability protection and advocacy system will get $10 million to provide technical assistance and monitoring on polling place access. However, in a major setback, the Senate approved an amendment that exempts communities of fewer than 50,000 from the accessibility requirements. In the Southern Tier, this could mean that only Binghamton would be guaranteed accessible polling places. Some advocates are also concerned about the bill's voter identification requirements, which are intended to prevent voting fraud. There is confusion about the extent to which the bill would actually require photo IDs from first-time voters, and some groups believe the requirement will be used to discriminate against people of color.

As we went to press, a House-Senate conference committee had been appointed to produce a compromise bill. Disability advocates were fighting hard to get rid of the small-communities access exemption. Meanwhile, in New York State, there was no progress on election reform because, as usual, all attention was focused on the budget. There is still concern that state officials will require voting machines that are both less accessible and more expensive than those recommended by disability advocates.

STIC has been working with VESID and representatives of the three major Independent Living umbrella organizations in New York to develop a simple but valid way to estimate how much money CILs save the state's taxpayers when they help people with disabilities get out, or stay out, of institutions. Part of this project involved researching the costs of various integrated and segregated programs in our state. This is a very complex issue, involving dozens of variables that can't always be accurately predicted. So, the numbers we've come up with are conservative: they downplay segregated institutional costs and overestimate integrated support costs in nearly all cases, in order to provide guaranteed minimum actual savings per consumer. We're only talking about New York State money here; federal costs and savings are not included. Even so, we think some of these numbers are mind-boggling. No sane policy-maker could look at them and conclude anything other than that we ought to close segregated facilities and transfer the money to integrated supports as fast as possible. See for yourself ("S" is for segregated settings, "I" is for integrated):

The federal Individuals with Disabilities Education Act (IDEA) is up for reauthorization in Congress. IDEA requires that all children with disabilities receive a "free appropriate public education" (FAPE) in the "least restrictive environment" (LRE) suitable to their needs. It requires that children be "classified" into one or more disability types and that individualized education plans (IEPs) that address each student's needs for technology, assistance, and individual educational goals and methods must be developed, with parental input and approval, by Committees for Special Education (CSEs). Children whose disabilities cause challenging behaviors in schools cannot simply be expelled; school districts must continue to educate them in some manner. Schools must also provide planning and assistance to transition students with disabilities from school to adult life. Services under IDEA are an entitlement and a civil right, and IDEA mandates due process for grievances, ranging from internal appeals to fair hearings to enforcement by lawsuit. IDEA says that the federal government should pay 40% of the costs of special education, but the feds have never contributed more than 12%.

There is much discussion about whether the current IDEA is effective and what, if anything, should be done to change it. Like most American public debates today, this one comes down to whether government should do more or less. Those on the "less" side feel that IDEA has been a tremendously expensive paperwork nightmare that lets dangerous kids get away with violence, lets crafty parents finagle more than their fair share of school support for their not-always truly disabled children, encourages people with disabilities to believe they are entitled to special treatment throughout their lives, and creates an adversarial relationship between educators and parents. Those on the "more" side believe IDEA is basically a good law that has been poorly funded and enforced, and that this should be corrected by the reauthorization.

We at STIC agree with some of the points on both sides. However, agendas other than getting a better law seem to be driving the debate. Many politicians just want to push a states' rights/local control ideology regardless of its practical effects on real schoolchildren, and many disability advocates are responding by manning the barricades with a "don't change anything" defense. Based on past IDEA debates, we'd bet that those behind the barricades will win, but the result will be a tragically squandered opportunity to finally get special education right.

Our extensive experience with special education over the past 20 years has revealed a very serious and stubborn problem that manifests itself in three related ways:

The problem is that IDEA forces parents to negotiate for every aspect of educational services for children with disabilities, but guarantees nothing. The only real, enforceable requirement is that paperwork documenting these negotiations must be created. Unfortunately, most of the parents we see are ill-equipped to negotiate successfully. Many are low-income, two-earner, not-well-educated families who can't get enough in-home supports for their children; some of their marriages are under serious stress or have ended as a result. Most are dealing with school districts that regard students with disabilities as a problem and a burden; these districts' routine response is to send the kids off to segregated programs run by BOCES. We constantly see parents who want their kids to get individualized supports in regular classrooms ganged-up on, manipulated, demoralized and defeated by CSEs that are stacked with school officials who are under orders to minimize costs. Many regular-education teachers don't like and don't want to teach children with disabilities; many more are well-meaning but can't get adequate training or support from their districts.

Like everything else in IDEA, the LRE is only a "suggestion", not a requirement. Districts need only provide a written explanation of why they are exiling students to the "special school" or the "resource room"; there are no significant consequences for failure to integrate. Overprotective and misinformed parents are permitted to send children with behavioral or communication disabilities to special programs without even trying to see if they can succeed in a regular class with truly proper supports. When a savvy parent manages to get an inclusive placement, the supports are often so haphazard, the staff so poorly trained, and the willingness of teachers and administrators to make changes to resolve problems so completely absent, that many families give up and send their kids to segregated programs where, they think, they will at least learn something. Without a non-negotiable, militantly-enforced requirement that a high-quality, good-faith effort be made to include every child in a regular classroom unless and until it is clearly demonstrated that it won't work, districts have no incentive to properly train, support, and, when necessary, discipline their staff.

IDEA also lets schools get away with not providing basic, uniform access for students with disabilities. As we have said repeatedly: all blind children MUST learn braille beginning in first grade (this has been rectified in New York, though not in all states); all deaf children MUST have qualified sign-language interpreters or sign-language-fluent teachers (and culturally-Deaf children MUST have the option of attending high-quality Deaf schools); all school buildings MUST be fully accessible; all children who cannot read ordinary paper books or use ordinary writing implements MUST have access to appropriate assistive technology. These things should never be matters for negotiation; they should be black-letter law.

Now let's look at the issues in the national debate:

Learning, behavioral, and emotional disabilities: Most kids in special education today are there because they are classified in these categories. Our experience supports the scholarly researchers who say that these categories are dumping grounds for an expanding group of children who are misunderstood and difficult to teach for a variety of reasons. Not all of those reasons meet a layperson's definition of "disability," but that doesn't mean a school isn't responsible for doing whatever is necessary to teach these kids. We know that impoverished households, uneducated or neglectful parents, and ineffective teaching actually cause some forms of specific learning disabilities, because what and how you learn, beginning at a very early age, permanently changes the structure of your brain. We also know that the home environment plays a central role in how kids behave, and drugging kids is not a substitute for teaching, and expecting, them to control their behavior. Research has shown that there are some very effective, if expensive, early intensive intervention strategies that can largely correct these problems in young children so they won't spend their lives being labeled and hobbled by reduced expectations. But as long as schools can permanently send such kids to segregated programs, many regular classroom teachers will try to get them "classified" in order to get rid of them.

The "less" side says, "Okay, so let's not classify these kids as disabled at all, and maybe schools will provide the appropriate intervention out of the goodness of their hearts." The "more" side says, "Don't change IDEA's requirements for these kids in any way, and beef up enforcement."

STIC says: Everyone would be better served if schools treated all students, not just those with disabilities, as individuals, and provided whatever level of intervention and support is necessary for them to learn. However, it is naive (and probably a deliberate strategy to distract people while IDEA is fatally weakened) to argue that such a result is going to be achieved by any federal education law passed in the current political climate. So let's try this: IDEA should require every child with a medical/psychiatric/psychological diagnosis in these categories to undergo intensive individualized early primary-school intervention, at school district expense (fully funded by federal IDEA money), for a reasonable period of time. Such interventions may require some "pull-out" from regular classrooms. They may also require strong family involvement, and districts must provide effective outreach and training for these kids' families. After the intervention, the children will be evaluated to decide whether they'll be "classified". If a child is classified as having a disability, that child will have an IEP and receive effective supports in a regular classroom setting. If the child does not make significant progress on IEP goals, the state government will be required (on pain of loss of federal education funds) to impose a progressive disciplinary process on the district, beginning with requiring a plan of corrective action, and ending with regular education aid (don't penalize the child for the school's failure), being cut.

Racial/ethnic discrimination and incidence of disabilities: The evidence clearly shows that a higher proportion of minority kids are classified as having disabilities than white kids. However, evidence also strongly indicates that school districts that serve mostly minority kids classify them at a substantially lower rate than non-minority districts, while districts that are mostly white classify minority kids at a much higher rate than average. It looks like there is some simple racism going on in these white districts. It also is likely that many minority children, who are disproportionately low-income and living in poorer districts, are having their learning/emotional disabilities created by their home and school environments, as described above. Fortunately, the solution suggested above should work for both racism and environmental issues.

Discipline: The "less" side has claimed for years that IDEA's requirement that schools must educate all children with disabilities, including those whose disabilities can cause violent behaviors, disrupts school life and creates double standards whereby disabled kids get away with things that nondisabled children do not. Actual research indicates that in an overwhelming majority of school districts, that is simply not true. It's quite likely that districts with these problems are simply incompetently run. It is certainly true that if a child, disabled or not, "acts out" in order to escape schoolwork or the school environment, then letting him or her escape through suspension, expulsion, or transfer to a "special school" is precisely the wrong thing to do. Since the majority of these problems occur in kids with emotional or behavioral disabilities, early intensive intervention should, over time, greatly reduce the number of kids who are dangerous in our schools. In the meantime, STIC agrees with the "more" side that no ground should be given on this issue, and that full federal funding of IDEA should make it possible for problem districts to get the training they need to handle these issues appropriately. STIC also agrees with the "less" side that schools should be evaluated on the outcomes of their special education programs, and that schools that can't successfully help kids with emotional or behavioral disabilities learn to manage their behavior should have their funding cut--however, regular education aid is what should be cut, not IDEA money targeted for these kids.

Vouchers: The "less" side has been on a school voucher kick for years, and is now suggesting that parents of children with disabilities should be given vouchers so they can have a "choice" of which school to send them to. It is said that this will help reduce adversarial tension between parents and schools and let parents find what they need on the open market. STIC agrees with the "more" side that this is a bad idea. First, it would mean that no one is held accountable for delivering a quality FAPE to a child with a disability. Vouchers might enable families to send their kids to the best available option, but voucher programs do not require any school to actually provide good services. The "best available" in many regions may be quite bad, and without outcome standards and enforcement, may stay that way. Second, no voucher program today provides enough money for a family to "choose" the best schools, and voucher promoters, whose real goal is often simply to cut government spending and school taxes, constantly shrug this off. The experience of most families with voucher programs is that the only "choices" their voucher will pay for are the public school or the cheapest and shabbiest religious schools. There is no reason to believe that a voucher program for children with disabilities will work any better. In fact, since private schools cannot be required to accept students with disabilities under current law, they may work far worse.

Both the House and Senate have held IDEA hearings in recent months, and have heard a balanced variety of views. The Senate hopes to introduce a bipartisan IDEA bill on the floor in June. House leaders say they plan to get a bill through various committees sometime before the end of the current session, but won't predict when it will come to the floor. It is unlikely that any House bill will be a bipartisan effort. This being an election year, it's fairly certain that if both sides dig in and fight hard, Congress will postpone action until next year rather than passing something that will alienate voters on either side. Meanwhile, advocates have targeted New York Senator Hillary Clinton because she seems to be in favor of weakening IDEA discipline requirements; she has been saying that many New York teachers, who have to deal with large classes of culturally and economically diverse children, have too much on their plate and should not be expected to handle behavior problems.

by Barb Kane and Ken Dibble

Okay. Like we keep saying, nobody really wants to live in a nursing home. And from a purely medical point of view nobody really needs to live in one; nothing gets done in them that can't be done just as well in your own home by people you control--and that includes acute post-operative recovery, which is no longer done in hospitals because it's too expensive. Practically speaking, however, New York State doesn't always provide enough in-home support to make staying home possible; this is especially true for younger people with progressive disabilities, and for older people whose main problem is Alzheimer's disease or some other form of dementia. Now, be careful: a lot of this is ignorance of what's available, and what's legally required, on the part of medical and social service providers; a lot more is deliberate refusal to tell customers what their options are because doing so takes more work, is more expensive, or might cost a provider a customer. If you're looking for long-term care, please, call STIC first! at (607) 724-2111 (voice/TTY). We'll tell you everything, and we can help you troubleshoot tough problems.

Sometimes, though, the nursing home becomes inevitable, at least for a short while. If that happens, it's critical for the friends and family "on the outside" to take steps to make sure that the experience isn't more miserable than it absolutely has to be. These steps don't just come from STIC's pro-integration mindset; these are hard lessons learned by actual people who used to believe that nursing homes aren't such bad places. And if, after looking over these steps, you get the idea that maybe the nursing home isn't such a good idea after all, so much the better!

1. Don't sell the house for as long as possible. One of the biggest problems for people who want to leave nursing homes is that they no longer have a home to return to. Fixing that takes a lot of time and money; it's much better to keep the house in case the opportunity arises for the person to go home.
2. Before choosing a facility, not only should you visit it several times, you should thoroughly check out its reputation in the community: find out about its financial stability and support, who is on its Board of Directors and what are their connections. Find out if it offers activities and social events that your relative actually likes. Is it near good public transportation and/or cultural and entertainment places that your relative enjoys, such as libraries, theaters or sports stadiums? Insist that background checks be performed on all staff who will have anything to do with your relative. If the home doesn't do that, find another home, immediately! You are looking for a financially stable, professionally-run place that looks--and smells!--clean, that provides high-quality staff, proximity to the outside community, and plenty of social and mental stimulation for your relative. When you've collected all this information, sit down in a quiet place with plenty of time for thought, and ask yourself, honestly: Would I want to live in this place for an indefinite period of time? Would I want to eat there? Sleep there? Socialize with the people there? If the answer to any of these questions is no, look at more places.
3. Once your relative is inside, monitor the nursing home constantly. Live near it so you can make frequent unannounced visits at all hours of the day and night. Nights can be especially revealing; are there a lot of confused people wandering the halls with no staff around? Work near it too, so you can get there quickly in an emergency. Go there on holidays to make sure they have enough competent staff. Stop in unannounced for all three meals: Is the food properly warm or cold? Are the meals balanced? Do they comply with doctors' orders and your relative's preferences? Are the dishes and tables clean? Use your relative's bathroom, not the one for visitors, while you're there. Is it clean? Is there an emergency call bell? Is it accessible? Is the floor slippery when wet? Get to know the other residents; find out who your relative's friends--and enemies--are. Don't make all these visits yourself; the staff may start to recognize you and make things look better than they are when they see you coming. Instead, recruit relatives and friends to spot-check. And, if you can, become friends with a nursing home employee so they will watch out for your relative when you aren't there.
4. Don't rely on the home's medical staff. Make sure you have the time and money you need to take your relative to their own, trusted, doctors. Be sure that a good-quality major hospital isn't too far away, and that your relative is taken there for specialized care; that's especially important in most smaller towns in upstate New York. You're okay around here if your condition isn't unusual or complicated, but if it is, you'd best go to one of the big cities.
5. Give your relative a phone with large numbers and program a single button to call your number; this may help him or her feel safer.
6. Keep records of all the medications your relative receives, including purpose and dosage, and check their chart frequently to make sure that they are actually given. If there is a sudden change in your relative's emotional demeanor or physical appearance or abilities, the first things to look for are medication interaction problems and errors. It's common for two or more doctors to prescribe meds that should not be combined because they aren't keeping track of everything your relative takes. It's also common for the staff who dispense the meds to be poorly trained and paid; that's a recipe for serious error or worse.
7. Give your relative a lockable safe or chest where they can keep treasured valuables--not just money, but photos, letters, and other personal mementos. This won't stop the staff from stealing the key and getting into the box (that's what unannounced visits and background checks are for), but it will keep confused, wandering residents from taking stuff that they think is theirs.
8. If you talk about your relative's old home and they start crying or become depressed, it isn't a sign of dementia. It means they want to go home and you should do everything in your power to get them out. If you can't get them out, then you shouldn't bring up the subject with them.
9. Take your relative out for meals and other things often; everyone needs a change of scenery and these outings can be rejuvenating.
10. Remember, none of these steps is going to make the nursing home a "good" place for your relative. The only good place for your relative is in their own home in their own community. But following these steps can help prevent some of the worst horrors of institutional living.

by Linda Greeno

R.E.S.P.E.C.T. is very important to all of us. If you want respect from everybody then you need to respect everyone too.

If you don't show up for your medical or other appointment, you are not showing your respect because the office you are supposed to go to has to pay an interpreter for nothing and they don't get paid for your business. The more you miss appointments, the more they don't have respect for you and the Deaf community. Every Deaf person represents the whole Deaf community. If one Deaf person doesn't show respect, it does affect all the Deaf community. Please be respectful and let your appointment know if you can not go, not one hour before, or after the appointment. Let them know one day before, or early in the morning would be much appreciated, but tell them ahead of time so they can cancel the interpreter and not waste time and money.

Now Carrie's job is to get you an interpreter and she always does her best to do her job to make sure you all have an interpreter for your appointments. We have more than 300 deaf people in our community--including Tioga, Broome, Chenango, other counties and PA. We only have less than 10 free-lance interpreters for 300 deaf people who need interpreters every day. You have to understand that 10 interpreters are not enough to make 300 deaf people happy. We must work together to make everyone's life easier. If Carrie calls you back or emails you that there is no interpreter available, do not get mad! You need to be very understanding and change your appointment so you can have an interpreter. Remember, Carrie and all the interpreters have family at home too. Please respect their privacy. If it is an emergency, call the emergency interpreter pager, (607) 774-4780. Don't call them at home, emergency or not. Be respectful.

So far, I have been very busy learning and doing advocacy for you all. I am enjoying my job. Every day I'm learning something new. My job is to make sure everyone is independent, not dependent on me. My job is also confidential and if you feel I'm not doing my job, you can let me know or talk to my supervisor, Sue Link. Call either of us at 724-2111 (voice/TTY), email me at deaf@stic-cil.org, or email Sue Link at peers@stic-cil.org. Thank you for your respect!

A chronic problem for people on Medicaid has been finding dentists who will accept the program's low reimbursement rates. For years people in our region have had to travel long distances for dental services or go without. For Broome County residents, at least, that problem may be partially solved by the new Dental Access and Case Management Program. The program, funded by Broome County Medicaid and the Hoyt Foundation, in cooperation with the Broome County Dental Society, has developed a treatment/funding plan that is acceptable to many local dentists. The program will provide a case manager who will hook up Medicaid patients to dentists and provide follow-up to see that they keep their appointments and get required services. According to the Binghamton Press & Sun-Bulletin, the case manager, Jessie Sullivan, says the program could serve as many as 1,500 Medicaid patients in its first year. If you are on Medicaid and you need help finding a dentist, call Sullivan at the Department of Social Services at 778-3770.