AccessAbility

by Maria Dibble

While admittedly I've always been a skeptic about the New York State Office of Mental Retardation and Developmental Disabilities (OMRDD)'s commitment to consumer choice, person-centered planning and self-direction, they had almost won me over with "Self Determination". Have no fear, however; they blew it again when they introduced their latest scheme to fund supported employment.

Supported employment provides ongoing assistance to people with significant disabilities who need it to get and keep jobs. It usually involves a short "intensive" period of helping somebody find a job and learn it, followed by a long-sometimes lifelong-period of ongoing monitoring and occasional intervention to help the person deal with changes in the work or their life that can affect their ability to keep their current job, change job duties or employers, or get promotions. VESID pays for the intensive phase; it is this second, "extended" phase that OMRDD funds for people with developmental disabilities.

OMRDD's plan is very simple, deceptively so: enroll all people receiving OMRDD Extended Supported Employment Services in the Medicaid Home and Community-Based Services Waiver. (The waiver lets the state "waive" federal rules that require uniform availability of services in order to use Medicaid funds for a specific set of services only for people with developmental disabilities.) The rationale for this is to use more federal funds for supported employment, saving state dollars to (theoretically) expand available services and begin working with people requiring higher levels of support. Sounds sensible and harmless, right? Well, it's anything but!

What makes this new OMRDD direction so objectionable to consumers and providers?

• It means consumers must apply and qualify for Medicaid if they aren't already enrolled, with all the paperwork, headaches and months of waiting that involves.
  
  
• When consumers advance in their careers and begin to make a decent income, they will face "spend down" requirements in order to remain eligible for Medicaid and keep their employment supports. This means they would have to pay New York State enough of their wages to keep them below the poverty line. Yes, in order to use a service whose only purpose is to help them get and keep a job, they would have to give away much of the money they earn on that job. (See Excuse Me, Have You Seen My Work Incentives? for more on spend downs.)
  
  
• Waiver participants are required to accept some service coordination. While participants can opt for Plan of Care Support (PCS) instead of full Medicaid Service Coordination, PCS is still a form of service coordination. It requires consumers to attend formal meetings, disclose personal information, and deal with paperwork. None of these things is of inherent benefit to extended supported employment consumers, and up to now has not been required of many of them. It is, at the very least, a waste of their time, and for many, a highly objectionable imposition of additional professionals into their lives as well as an intrusion into their privacy.
  
  
• Certain providers who have a history of not giving full information about options and choices to consumers may pressure supported employment consumers or their families to accept Medicaid Service Coordination (MSC) from their agencies, or simply assign them to it without discussing their options, in order to reap the monthly MSC fee. Full MSC is even more of an unnecessary waste of time and money for many extended supported employment consumers than is PCS.
  
  
• Neither of these versions of service coordination is readily available now. This is a huge barrier, but OMRDD is burying its head in the sand and pretending it isn't there. OMRDD pays $214 a month for MSC, a rate that hasn't changed in a decade. (In comparison, the Department of Health just raised its monthly rate to $340 to provide similar services to people with traumatic brain injuries.) And PCS, the option OMRDD pushes when consumers object to monthly MSC meetings, etc., pays much less than that but still requires a lot of work and responsibility. For these reasons there is a serious shortage of service coordinators and an even greater shortage of agencies/service coordinators willing to provide PCS. In order to use supported employment services, OMRDD is going to require thousands of people to first obtain another service (MSC/PCS) that they won't be able to get.
  
  
• Under the current system, each year the legislature allocates significant chunks of new money for OMRDD supported employment, and we have had no trouble getting supported employment funding for as many OMRDD consumers as need it, as soon as they need it. But under the new system, all OMRDD supported employment funding will be allocated through OMRDD's CSP (Community Services Planning) process. In CSP, all Medicaid waiver funds are dumped into one pot, and, instead of having a protected annual funding stream, people seeking supported employment services will have to compete with all other persons requesting all types of OMRDD waiver services in their community. For the past several years, the state legislature has not allocated much new money for CSP, preferring to sink tens of millions into NYS CARES group homes, and many people who seek new non-residential services are placed on waiting lists. With the new system, lots of people with developmental disabilities may complete their VESID-funded "intensive" supported work period, request OMRDD extended services, get told that CSP is out of money for the year, and lose their hard-won new jobs due to lack of ongoing supports.

OMRDD seems confident that it can force this destructive change on consumers and providers, but you can rest assured that we are not going to let this drop. Before I decided to go public with this editorial, I communicated many of these concerns to OMRDD Commissioner Tom Maul in a letter. His response did not contain a serious or constructive effort to address them. The full impact of this has not really sunk in for many people, but it will as OMRDD's deadline for implementation arrives. If it has already sunk in for you, please call me at (607) 724-2111 (voice/TTY). We're putting together a statewide coalition to fight this thing. You may also want to call OMRDD Commissioner Thomas Maul at (518) 473-1997. And, watch our website at www.stic-cil.org for updates.

As he promised in his "New Freedom Initiative" on disability policy in February, and to ADAPT protesters in Washington in May, President Bush issued an Executive Order mandating the federal government to speed up implementation of the Supreme Court's Olmstead decision.

The Olmstead decision clarified that failure by state governments to serve people with disabilities in the most integrated setting appropriate to their needs is illegal discrimination under the ADA. The Court said that states that have a "comprehensive, effectively working plan" to maximize integrated services for people who want them should not fear lawsuits. New York does not have such a plan.

Bush's order contains the following provisions:

• The US Attorney General; the Secretaries of the Health and Human Services, Education, Labor, and Housing and Urban Development Departments; and the Commissioner of the Social Security Administration are ordered to work cooperatively to help states assess their compliance with the Olmstead decision.
• Those agencies must also involve people with disabilities and their advocates in a review of all policies and procedures to identify barriers to community integration, and report the results by mid-October.
• The Justice Department and the Health and Human Services Department's Office of Civil Rights (OCR) are ordered to "fully enforce" Title II of the ADA, including investigating and resolving complaints of "unjustified institutionalization".

The Executive Order also has some potentially serious weaknesses. The agencies empowered to investigate and resolve complaints are ordered to "work cooperatively" with states and use "alternative dispute resolution" to resolve them. That means lawsuits are not likely to be filed except in the most extreme cases. "Alternative dispute resolution" means arbitration, which can result in decisions that compromise people's full civil rights. Also, the order says these activities must be carried out "consistent with this Administration's budget"; this implies that no new money will be made available to fund them.

Bush appointed Health and Human Services Secretary Tommy Thompson to coordinate the Administration's Olmstead efforts. Shortly afterwards, Thompson's department and most of the others issued statements on how they will implement the order. These statements contained little more than lists of activities already under way, including some begun by the Clinton Administration. Since then, however, Thompson has announced the creation of an Interagency Council on Community Living, with members from all the departments, to coordinate the effort. This group has been heavily promoting a series of public teleconferences where people with disabilities and their advocates are invited to present input on barriers to community living, as part of the policy review mandated by the order.

ADAPT submitted a sheaf of recommendations for ways to implement the order. Some of the more interesting ones included:

• A formal role for ADAPT representatives in developing all departments' proposals for change and in overseeing their implementation
• Each department should have specific timetables for completing policy reviews, developing proposals for change, and implementing them, and should request adequate funding to carry them out
• HUD should issue new Section 8 vouchers specifically to implement the Olmstead decision
• The Administration should support legislation, such as MiCASSA, that reverses institutional bias in Medicaid and Medicare funding
• Redesign department structures with a cross-disability focus, for example substituting an "Administration on People with Significant Disabilities" for the Developmental Disabilities Administration (keeping the DD Administration's functional criteria but changing the age of onset threshold to "under 60")
• Develop a Medicaid "Transition" service that would reimburse personal costs related to moving from an institution to a community setting
• Revamp policy on "risk" to clarify that disability service providers are responsible only for the quality of the services they provide and not for a person's life

As of late August it did not appear that Thompson or the Interagency Council had responded to these ideas.

Watch our website at www.stic-cil.org for updates.

Amidst national outrage at his remarks about "cripples" (see our last issue), Lewis said, "The statement I made on the May 20 CBS Morning Show was made in error. It is certainly not how I feel. I admire people with disabilities. That's why I've worked so hard for all these years....Please accept my deepest apology." Advocates, however, continued planning Telethon protests, saying that Lewis's and MDA's use of the "pity approach" to raise funds must end.

Three nursing homes in STIC's service area were among 24 such facilities cited by New York State Health Department authorities for harming or potentially harming patients in the past year, and in a fourth a patient was assaulted by a staff member. These events appear to be part of a growing trend in the state.

As reported by the Binghamton Press & Sun-Bulletin, the Pearl & Everett Gilmour Health Care Facility in Norwich, the Waters of Endicott nursing home, and The Hospital in Sidney were cited. At the Norwich facility, staff failed to properly monitor a patient's medication, resulting in a trip to an emergency room, and left another, incontinent patient waiting for several hours in a hallway with wet pants. The Endicott home was accused of not properly caring for patients with feeding tubes. The Sidney facility was fined $8,000 for various violations.

Both advocates and nursing home lobbyists said the citations represented a worrisome trend resulting from the facilities' inability to recruit or keep low-paid aides. Nursing home lobbyists also criticized the state for suddenly changing its facility inspection standards and practices in response to charges by federal officials, consumers, and individual state inspectors that the state was not enforcing its own requirements.

In July a nurses' aide at the NYS Home for Veterans in Oxford was fired after slapping an elderly patient "to make her stop crying", and is facing criminal charges in the incident.

In recent years New York State has reduced or held level reimbursements for nursing homes, and this unquestionably has contributed to the facilities' staffing problems in the current tight labor market. However, homecare agencies are facing the same problem. Advocates object to giving more money to nursing homes. Instead, they call for systematic reform of state policies that encourage or force people to move into nursing homes instead of making adequate levels of homecare widely available. Increasing reimbursement for homecare, especially for consumer-directed homecare, would enable people to remain in their own homes and in control of their own environments at an average per-person cost of about one-third of what is spent to keep a person with similar needs in an institution.

The Utica chapter of United Cerebral Palsy is trying to build a new segregated residential school for children with disabilities in the rural upstate town of Lowville. UCP Board President Louis Tehan proposed the school to Governor Pataki, claiming it would provide some 200 jobs for this small, economically-depressed town. Pataki apparently instantly gave the facility his full support.

Theoretically, Pataki shouldn't be able to get a residential school built on his own. From what we've heard, both OMRDD and its Central New York DDSO (which has jurisdiction over most services for children with significant disabilities in the area) are opposed to this backward step, as is Commissioner Mills of the State Education Department (SED), which oversees educational facilities. OMRDD, however, is subject to direct orders from Pataki and may eventually cave in, as it did a decade ago in Tioga County, where political pressure got a new sheltered workshop constructed with OMRDD funds even though the agency's official policy was that no more such facilities would be built.

The SED Commissioner is appointed by the fairly independent Board of Regents and therefore is not directly subject to the Governor's control. However, STIC has seen indications that the Board of Regents may be subject to political influence. A few years ago both Regents Chancellor Hayden and VESID initially supported STIC's efforts to prevent the use of Binghamton's Columbus School as a new segregated program facility. However, once Hayden "looked into" the matter, VESID (which is under SED) suddenly dropped its opposition to the project and both Hayden and VESID representatives refused to discuss the issue further. At the time insiders speculated that one or more anti-integration state legislators applied pressure to get this result.

This situation is similar to that of the Northeast Center for Special Care (see NCSC Update), and to that of a huge ICF being planned for Westchester County. That is, there is potential for local boosterism to combine with political deal-making to derail sound disability policy. Advocates, under the leadership of the Center for Independent Living in Watertown, are organizing to stop this travesty. We'll keep you posted.

The Northeast Center for Special Care (NCSC) once again faced imminent closure in July, and as of late August, was operating under its second cutoff of Medicaid and Medicare funds in two years.

As we've reported previously, the NCSC is a large nursing home in the Hudson valley that is owned by a for-profit company operated by executives of the former NewMedico corporation (which dissolved following revelations of systematic Medicaid fraud, neglect and abuse). NCSC occupies a former IBM building for which Governor Pataki undertook to find a tenant in return for IBM's promise not to move out of New York State. NCSC's President, Anthony Salerno, obtained approval for the facility, which is promoted as an advanced "rehabilitation center", from the state over the strong objections of Health Department officials after making several political campaign contributions to Governor Pataki and other state officials.

In August the Department of Health (DOH) announced that the facility had been placed in "immediate jeopardy" of closure in late July after inspectors found that seven patients had wandered away from the center unbeknownst to the staff and two of them had been found on the railroad tracks, one standing in front of an oncoming train. The facility's administrators never investigated these disappearances. Other reported incidents included sexual and physical assaults by patients on each other, salmonella food poisoning, patients' personal belongings stolen by staff, failure to answer patients' calls for help for several hours at a time, and insufficient staff to provide proper security or services. The center was fined $32,000 for these lapses.

The "immediate jeopardy" condition was lifted when NCSC officials submitted a "plan of correction" to address the DOH citations, but the facility is still banned from accepting new admissions paid for by federal Medicaid or Medicare funds.

Earlier in July DOH officials who had opposed the facility's construction were vindicated when it was revealed that out of about 360 people with traumatic brain injuries (TBI) who were being served out-of-state in 1995, in its four years of operation NCSC had returned only 61 to New York, and only $4 million of a projected $25 million in NY Medicaid dollars was returned to the state. These results are even lower than those that DOH officials originally projected when they wrote a report opposing the facility in 1995. At that time DOH believed that only 150 to 175 of the people with TBI in out-of-state placements would be appropriate for the new facility, and that all of them could be served with greater quality and for less cost in existing community-based programs in their home towns. DOH officials stated that these projections did not justify a new 270-bed institution. However, these officials were ordered to drop their objections following Pataki's personal intervention on behalf of the Center. Throughout its history, many of NCSC's beds have been filled with people with disabilities other than TBI, many of whom also could be better served in less expensive and more integrated community settings.

In 2000, state and federal Medicaid officials repeatedly inspected NCSC and issued four scathing reports describing abuse and neglect of patients similar to that in the most recent report, as well as failure to provide services that were billed for. As we reported last winter, state officials were convinced that the facility could not correct its many problems and as late as 5 pm Friday, October 6, 2000, the center was slated to be closed on Monday, October 9, 2000, but the closure order was suddenly rescinded over that weekend.

With state legislators of both parties who represent the region surrounding the facility expressing continued support for NCSC, and state and federal officials apparently just awaiting the latest "plan of correction" from a facility that has failed to follow four previous plans before once again reinstating Medicaid and Medicare funding, advocates wondered what it will take to close a facility that has for nearly two years repeatedly injured, abused, neglected and defrauded patients.

Last issue we reported on proposed amendments to the Individuals with Disabilities Education Act (IDEA) being introduced as part of the Senate's Elementary and Secondary Education Act. The amendments would have let schools follow uniform discipline policies for all students without regard for the fact that such policies would produce unequal results for students whose disabilities affect behavior.

Similar amendments were introduced in the House version of the bill, and toward summer's end it seemed likely that they would remain in the compromise version that the House-Senate conference committee would produce. It appeared that advocates had lost this battle when suddenly help arrived from an unexpected source.

On August 13, President Bush's Education Secretary, Rod Paige, sent a letter to the conference committee urging them to remove all IDEA amendments from the legislation they were working on, saying that Administration officials "...recognize that IDEA discipline policy is a very complex and controversial issue. As such, it deserves a careful and thorough review during the IDEA reauthorization." However, despite Bush's presidential campaign statements supporting full funding of the federal share of the costs that IDEA imposes on school systems, Paige's letter also urged conferees to remove language that would have fully funded IDEA.

Paige said he was concerned that minority children were being disproportionately placed in special education and full funding might create financial incentives to continue that practice. Advocates expressed pleasure because IDEA has been saved from destructive changes, and praised the new Secretary for his good grasp of special education issues and willingness to address them constructively.

Members of the Coalition To Implement Olmstead in New York (CTIONY) and the NY chapter of ADAPT held a sit-in in Albany on July 19 to force the state Department of Health (DOH) to rewrite grant proposals related to developing an "Olmstead Plan".

At CTIONY's urging, DOH wrote proposals for federal funds to transition people out of nursing homes. However, the proposals focused on outreach to people with developmental disabilities in ICFs and redesign of bureaucratic systems. They would have provided $600,000 to OMRDD, most of it for the Self Advocacy Association of NY (which planned to contract with OMRDD to do the outreach), and another $600,000 to DOH. There were no plans to actually get anyone out of a nursing home, and, since OMRDD refused to commit to fund integrated supports for "outreach" recipients who wanted to leave ICFs, no one would actually get out of an ICF. Coalition members knowledgeable about the federal grant requirements argued that the proposals not only did not address the most important needs, they would not be approved.

The Coalition told DOH's state Medicaid Director of their objections, urged him to change the proposals, and said that neither the Coalition nor NYS ADAPT would provide letters of support unless they were changed. The Medicaid Director was not enthusiastic but agreed to negotiate. When time ran out for telephone discussions, Coalition reps and the Medicaid Director agreed to a face-to-face meeting in Albany the next day. The Coalition and ADAPT brought 30 people to Albany for the meeting. Four representatives went to meet with the Medicaid Director while the rest of the advocates waited nearby. The meeting seemed to be going well, so the Coalition reps agreed to pull their supporters out of the room they were occupying and return after a lunch break. However, after the withdrawal and break, the Medicaid Director was suddenly no longer available. Following this double-cross, the activists staged a sit-in in the DOH Commissioner's office. After several hours, the Commissioner ordered her people to resume good-faith negotiations. By July 20, the proposals had been largely rewritten.

Under the new proposals, 125 people will be transitioned out of nursing homes, steps will be taken to expand Consumer Directed Personal Assistance programs, and programs will be created to divert people seeking long-term care services away from nursing homes and into integrated settings. Coalition leaders said the proposals, if approved by the feds, could become the basis of a real Olmstead plan for New York, but were cautious about declaring a complete victory until the details of implementation are worked out.

Last time, we reported about Robert Wendland, who incurred a severe head injury in a car crash and couldn't speak or feed himself but was conscious and able to maneuver a wheelchair, write his name, play games and control a TV. His wife Rose wanted his feeding tube withdrawn on the grounds that he had told her before his injury that he would not want to live in such a condition. Wendland's mother opposed Rose's wishes and the case went to court.

Wendland died of pneumonia in July, but the California Supreme Court issued a ruling anyway to provide guidance for future cases. In a unanimous decision, the court found that Rose Wendland had not provided sufficient evidence of Robert's desires and that letting him die would not be in his best interest. The court's opinion stated that in cases where a person is conscious but cognitively impaired, life support cannot be terminated unless the person had either formally appointed a health conservator or had created a formal advance care directive prior to being incapacitated. While this ruling applies only in California, it may become a useful precedent when euthanasia cases are considered elsewhere.

by Ken Dibble

The issue of the death penalty for people with mental retardation was in the news recently. A man with that disability was scheduled for execution in Texas, but the Supreme Court stopped it. A bill outlawing such executions was passed by the Texas state legislature, but the governor vetoed it, claiming, "We already don't execute mentally retarded people in Texas." New York State has the death penalty, so this might happen here.

For many people, this is one of those disability issues that get mixed up with other "progressive" causes, and they get emotional and forget what Independent Living stands for. In this case, a lot of usually sensible disability activists are saying that people with mental retardation should never be executed. Well folks, that's wrong--or at least, it's not sound Independent Living philosophy.

Let me say that I strongly oppose the death penalty for any person for any crime. I do not believe that fear of execution deters people from committing murder. In fact, in terrorist or political murders committed by the likes of Tim McVey and those who did the African embassy bombings, I think the death penalty is welcomed by people who want to be glorious martyrs for a grand cause. I believe the death penalty sends the wrong message to society: that under some circumstances, killing people is the solution to a problem. I believe that life in prison without parole is a far more unpleasant and crime-deterring punishment than instant death. I do not believe that executions bring "closure" for many survivors of murder victims, and I know that "forgiveness" is how victims climb out of their victimhood and get on with their lives.

Nevertheless, when we talk about blanket laws to forbid executing people who have a mental retardation label, the issue becomes equal treatment of people with disabilities, not the death penalty. We need to ask ourselves if we are perpetuating destructive myths about people with intellectual disabilities.

It is true that unscrupulous police and prosecutors will often grab any mentally or emotionally vulnerable person they find connected to a crime and try to frighten or otherwise trick them into confessing. That's a lot easier than actually investigating and learning the truth. It's also true that many Americans wrongly believe that people with intellectual disabilities tend to be violent. Given these realities that tend to bring about wrongful convictions, should we not bend over backwards to protect people with intellectual disabilities from the irreversible finality of execution?

The answer to that, of course, is yes. And the Texans may actually have the right idea. When their governor said, "We already don't execute mentally retarded people," he was telling the truth from his point of view. That's because Texas law forbids the execution of people with "mental retardation", but the legal definition of that term doesn't have anything to do with the medical or educational definitions that we are used to. In Texas, juries look at all the information that they have been given about a defendant and make their own decision as to whether that person has an intellectual disability that is significant enough to justify sparing his or her life.

For those of us used to the federal or NY definition, "mental retardation" is just an IQ range and the cutoff is 70. But many people just south of that border have strong egos and know right from wrong and the consequences of their actions. When I worked in an institution I knew one or two such people myself who were capable of intentional murder and had even tried to commit it. There are also people just above the line with a limited grasp of life's realities who could easily be manipulated or frightened into committing a capital crime, or confessing to one they didn't commit. As always when considering abilities, we must look at the individual and not generalize, whether we like what we see or not.

Letting jurors decide may be the best option, but a jury's decision is only as good as the information it gets. Advocates say Texas defendants often don't have very good lawyers and juries don't always get the full picture. A person's life should not be solely dependent on the quality of his/her lawyer; some safeguards should be built in. Prosecutors and police who railroad innocent people should be convicted of serious felonies and imprisoned, instead of getting their hands slapped as often happens now. There have been cases where judges refused to let juries hear information about the mental or intellectual disabilities of the accused. That should be illegal. There have been cases where defense attorneys have not been allowed to arrange for IQ or other tests for defendants whose intellectual abilities are questionable, due to cost. That should be outlawed. And people who care about this shouldn't vote for Presidents who will appoint Supreme Court Justices who will weaken 4th. Amendment protections against police power, or who think it's more important to execute people quickly than it is to make sure they're guilty first.

If those issues are taken care of, it will be much less likely that people with intellectual disabilities who are not guilty of capital crimes will be convicted of them, or executed if wrongly convicted. And, if a person with a significant intellectual disability does kill someone, judges and juries would have the information they need to decide whether that person truly was unable to understand what he or she was doing, and respond accordingly.

We have tried for years to show that virtually all people with intellectual disabilities have desires and preferences that should be respected, that they can make sound decisions about at least some aspects of their lives, and that they can be integrated into society. Every time you argue that no person with mental retardation should ever be executed, you tear down all that hard work. You fall into the trap of demanding special treatment for people with disabilities, saying, on one hand, that they are entitled to equal rights as citizens but, on the other hand, they can't handle equal responsibilities. You as a disability advocate may feel the death penalty is an extreme special case that demands protective action, but most people don't think it's a special case. For them it fits right in with laws that forbid consenting adults with intellectual disabilities to have sex; with policies that trap people in an endless closed circuit, riding the "special bus" from the "special house" to the "special workshop" to the "special party"; with attitudes, held even by educated and sophisticated adults, that it's okay to use "retarded" as an insult or a joke. Think hard: do you really want to send that message?

Let me repeat that people who truly don't know right from wrong, or who can't understand the consequences of their actions and are thus not responsible for them, should never be executed. If I had my druthers, no one would receive such a punishment, but that's not the world we're living in. So we must apply the same reasoning to this highly-charged issue as we would to any other type of differential treatment of people with and without disabilities. The abilities of individuals, not labels applied to groups, must always govern our actions, negative or positive.

by Darlene Dickinson

The names and work settings of the people who shared their stories have been changed to ensure their anonymity. The predicaments they face are real and the circumstances described in the article are factual.

A sign on the window of a local bank declares that "PEOPLE are worth more than money". I wonder if the teller behind the glass would agree with that statement? Kim is a person with a disability who is being penalized by the State of New York for getting a job! I doubt very much that she feels more valuable to our elected officials than those little green slips of paper she is counting right now. Unfortunately, NY's policies concerning Medicaid and workers with disabilities make it almost impossible for Kim and many others to take jobs at competitive salaries, which would enable them to be self-supporting. But, you don't have to take my word for it. After hearing Kim's story, I started seeking stories from other working people with disabilities. In less than a week, I had three others from Broome, Chenango, and Tioga Counties.

Kim's Story:

Until she lost most of her sight due to diabetes, Kim was a single mom working to support herself and her son. When her health forced her to quit her job, Kim applied for benefits at the Social Security office. Her prior work history and classification as legally blind qualified Kim for Social Security Disability (SSD) and Medicare. She began receiving $630 a month in SSD and $300 a month in Dependent Aid to help with the expense of raising her son. Because her $930 monthly income fell below the poverty line for a family of two, Kim was also eligible for Medicaid. Medicaid was essential for Kim because Medicare does not cover the cost of insulin and other prescription medications that Kim must take daily to control her diabetes.

Now, if you didn't mind living on government assistance and staying under the poverty level--and your child didn't mind missing out on trips to amusement parks, occasional nights at the movies, or other activities with friends because Mom is always broke--you might have been content to stay home and do nothing. Kim wasn't. She wanted to go back to work, to support herself and her son again, and to have a little money for herself once in awhile. So, she went to school. Shortly after she finished, her son moved out and she lost the $300/month in dependent aid. Just after that, she landed the teller job at the bank and began earning $225 a week gross income. And, shortly after that, she received a notice from the Department of Social Services stating that she must pay more than $400 a month to keep her Medicaid coverage.

This is called a "spend down". It is designed to prevent Medicaid recipients from rising above the poverty line, thereby maintaining their eligibility for the program. In other words, any money that Kim makes to get herself out of poverty New York will take away from her in exchange for continuing Medicaid coverage. In fact, when you add up Kim's total monthly expenses, including the $400+ spend down, she is actually further in the hole than she was before she started working!

So, what's the big deal? Kim has a job. Why doesn't she just drop Medicaid and get medical insurance through the bank? Easier said than done. First, Kim is a part-time employee who was hired by the bank, but is classified as a temporary worker. The bank contracts with a local temp agency to handle payroll and benefits for tellers. Therefore, Kim would have to buy into the temp agency's insurance plan. This would cost her about $55 a week. Yes, this is certainly cheaper than a $400+ monthly spend down. There is, however, a catch. Because Kim is diabetic, she is not eligible for coverage until she has paid premiums to this insurance company for one year! She would, essentially, be paying for a service she could not use! Insurance companies often deny coverage to people who have "pre-existing" conditions. As a result, they exclude almost anyone with a disability. By law, they can only deny service for one year. So, perhaps Kim could just skip her insulin injections and other meds for a year? Imagine paying a grocery store $50 a week and going home with empty bags! Of course, if you haven't starved to death at the end of the year, you can buy all the food you want!

Wait a minute! There must be programs or loopholes that let people with disabilities work and keep getting Medicaid until they can get medical insurance, right? Sure. Unfortunately, Kim doesn't qualify for any of them because she receives SSD instead of SSI (Supplemental Security Income). We will explore the pitfalls of work incentive programs for SSI recipients in a moment.

Kim took her problem to the Social Security office, hoping that someone there could find a way for her to qualify for Medicaid without a spend down that made it impossible for her to pay her bills. The only option they could offer was that she must declare enough "blind work expenses" (Social Security rules make it somewhat easier for people who are blind to exclude income from eligibility determination than for people with other disabilities) to drop her monthly earnings from $900 to $79 a month. While she could count her lunch expenses, taxes and any specialized equipment, such as orthopedic shoes, Kim could not come up with enough work-related expenses to drop her income that dramatically.

So, what is Kim to do? Her options are: 1) Pay the $400+ every month to keep her Medicaid coverage and default on her student loans; 2) Drop her Medicaid and pay for her prescriptions out of pocket (a cost of approximately $550 a month) and default on her student loans or; 3) Quit her job and try to pay off the money she borrowed to get an education she cannot use. When asked about these options, Kim shook her head and said that she would be better off staying home and watching TV while the government picks up the tab for her food, housing, and medical expenses.

Lisa's Story:

Before developing multiple sclerosis (MS), Lisa attended college and worked part-time to help support her family. Lisa was able to finish her associates degree, but, as the effects of MS became more severe, she was unable to continue doing the physically demanding job that had helped pay the bills.

Because her earnings had been relatively low during her work history, Lisa was eligible for only $340 a month SSD, minus $50 a month in Medicare premiums. When added to her husband's earnings, the total yearly gross income for Lisa's family of three was less than $21,000. While this placed her family under the poverty line, Lisa could not receive Medicaid unless her husband agreed to sign a "Spousal Refusal" statement in which he denied any responsibility for the cost of his wife's medical care. For both Lisa and her husband, this was a hard pill to swallow. Without Medicaid, however, Lisa would not be able to get the medications she needed to slow the progress of MS and maintain her health. She could not use her husband's medical insurance because, like Kim, Lisa was denied coverage due to a pre-existing condition.

Staying home day after day, having no other reason to get up in the morning than to put her daughter on the school bus, Lisa fell into depression. She needed a purpose. She needed to feel useful again. She wanted to be a contributing member of society, not a burden to taxpayers. Lisa made a decision and, this May, began working part-time in human services. When Lisa reported her work activity, the Department of Social Services also made a decision. Lisa was hit with a monthly spend down of $410.

Like Kim's, Lisa's Medicaid spend down is variable. It will rise and fall in proportion to Lisa's wages, keeping her at the poverty line. In fact, Lisa's caseworker informed her that every dollar she earned while working will automatically be added to her spend down. Essentially, Lisa is paying New York State for the privilege of working! Not only that, but she's also using her SSD to buy gas and pay for car insurance and vehicle maintenance so she can get to and from work!

Lisa's life is further complicated (by DSS) because she is married. Again, Lisa is ineligible for the 1619b work incentive program because she is not eligible for SSI. Therefore, she cannot own a home or any other assets totaling more than $3,000 or she will lose her Medicaid coverage. If that happens, she will no longer be eligible to apply, since DSS has begun denying Spousal Refusals that make people with disabilities who are married eligible for Medicaid. For this reason, Lisa turned down medical coverage offered by her employer. Yes, the amount she would have to pay each week to buy into the private insurance plan is less than her spend down. This plan, however, does not pay for personal care attendant (PCA) services. As Lisa's MS progresses, she will probably need a PCA to help with personal care. Therefore, she cannot afford to lose her Medicaid coverage.

Also due to this restriction, Lisa had to sign over to her husband the deed to the house they had bought together. Should anything happen to her husband, Lisa has no claim on the property. To protect his family, Lisa's husband willed the house to his daughter.

So, what can Lisa do? In a discussion with her caseworker, Lisa was presented with two possible solutions to her predicament. First, she would be better off if she were single. So one answer, according to her caseworker, would be to file for a legal separation or divorce her husband. While this would eliminate his income from the books at DSS, it is not an acceptable solution for Lisa or her husband. When this was made clear, Lisa's case worker responded, "Well, I guess there's no financial advantage for you to keep working...Tell your supervisor to write a statement with the date you quit your job." (Lisa wrote down the exact words used by her caseworker and quoted them back to me.)

Janet's Story:

Janet applied for SSI after several months of trying, without success, to find a job. As a person with a disability with no employment history or other means of income, Janet was eligible for SSI benefits. SSI recipients automatically qualify for Medicaid. Medicaid coverage gave Janet access to the PCA services she needs to get up, bathe, dress, and perform other personal tasks.

Shortly after she began receiving SSI and Medicaid, Janet got a job. When Janet began working full-time, the additional income did not affect her Medicaid eligibility. A program called 1619b allows persons who are no longer receiving SSI due to earned income to keep their Medicaid eligibility. There is an income cap on this program. It fluctuates somewhat from year to year. When Janet enrolled in the program two years ago, the cap was $28,000. In 2001 it's $33,000. As with the Aid to the Disabled program (through which Kim and Lisa receive Medicaid), however, 1619b imposes some pretty severe life restrictions on those who use it.

One major limitation is that people receiving Medicaid under 1619b can't have personal assets of more than $2000 if they are single, or $3000 if they are married. Ownership of a vehicle is permitted, but the vehicle must be used for "necessary transportation". In other words, a person enrolled in 1619b must demonstrate the vehicle's necessity for transportation to and from work, medical appointments, etc. It is also worth mentioning that nobody in the 1619b work incentive program owns a Lexis! Now, let's talk about housing. If the person already owns a home, he/she can keep it. Because 1619b restricts the amount of personal assets, including savings, that a person can accrue, however, a person can't save up enough money to make a down payment and cover the closing costs associated with buying a home. Therefore, many people with disabilities are excluded from becoming homeowners as a result of these restrictions. Pardon me, but I have to ask, "What's the point of working if you can't use the money you earn to pursue your dreams?"

According to Janet, the rules for retaining Medicaid coverage under 1619b weren't really an issue-until she got crazy enough to think she was entitled to the same rights and privileges as everyone else. When Janet and her fianc‚ decided to get married, the Social Security Administration (SSA) made life very complicated for the newlyweds. First, Janet was informed that, if she and her new husband were planning to occupy the same residence (as married people often do), they would have to keep their combined earnings under a thousand dollars a month or she would lose her Medicaid eligibility. This meant that Janet and her husband would have to eliminate $1,100 of their monthly income or hand it over to the state by way of a spend down!

Fortunately, Janet's husband is in the military. Because he lives apart from her, SSA didn't deem all of his earnings part of her income. In order to maintain this "separation", however, Janet could not accept any benefits that spouses of active military personnel are entitled to. Neither could she accept any money from her husband for food, clothing, or housing expenses. Money matters can strain any relationship. Can you imagine how difficult all of this financial mumbo-jumbo must have been for this couple?

Now, as if that wasn't bad enough, Janet was also forced to take a cut in pay because her marriage essentially nullified her eligibility for 1619b. Because Janet liked her job and wanted to keep working the amount of hours she had been working, she asked her supervisor to reduce her pay to keep her under the income limit. Janet was very good at her job. Not only did her boss want to keep her, but two other organizations offered her positions as well. She turned them down, but not because she is a slacker who wants nothing more than to stay home and live off government programs. She had no choice but to decline an increase in her earnings if she was to keep the Medicaid that provides her home care and PCA services. Again, private insurance, such as that offered by her employer, does not pay for these essential services. Without them, Janet would not be able to work!

Now, if that isn't ironic enough for you, try this: Janet's husband will be discharged from the military in March, 2002. What will Janet do then? Well, she can quit her job and hope that Medicaid will let her husband sign a Spousal Refusal so she can continue getting the services she needs.

Gladys's Story:

When Gladys was diagnosed with MS, she applied for and received SSD, Medicare, and Medicaid. At the time, Gladys was still able to walk with forearm crutches and did not require a PCA. When she re-entered the work force, she was able to work full time and get medical insurance through her employer that covered her medications and doctor visits. She did not need Medicaid.

As her physical condition changes, however, Gladys's needs change too. She is able to drive to and from work, but she no longer has the stamina to work full time. She uses a power wheelchair and requires assistance to get ready for work in the morning, and when she comes home at the end of the day. While Gladys is paying a premium to keep the medical coverage offered by her employer, it is useless for personal care. Private insurance companies do not pay for PCA services!

Like Kim, Lisa, and Janet, Gladys also faces a decision. If she continues working, she must pay for a PCA out of her own pocket, which she is currently doing. If she can't work enough hours to allow her to do that, she'll be forced to quit her job and stay home. In that case, she will qualify for Medicaid and, therefore, be eligible for PCA services at no cost. New York will pay for a PCA to help Gladys get up and dressed when she has no place to go, but won't do that if she has a job!
. . .
All of the people in these profiles are intelligent, capable, and possess talents and abilities that strengthen and enrich our workforce. These individuals have no desire to be "taken care of" by the state. In fact, they actually believe that they have something positive and constructive to contribute to a society that would just as soon they simply "go away".

If you think these are isolated incidents, consider this: STIC serves three counties, two of which are rural. I gathered four stories spanning all three counties in less than a week. How many would I have heard in a month? There are 38 Centers for Independent Living in NY. How many stories do they hear from people with disabilities who are facing the same choices between meeting their medical needs and working for an honest wage?

So, what are we going to do about it? For over a year, a bill has been stalled in our state legislature that would let people with disabilities who are working, or who want jobs, buy into Medicaid. It's called the "Work and Wellness Act", also known as the Medicaid Buy-In. It would allow people with disabilities to pay a premium based on their income to keep Medicaid coverage. How is this different from a spend down? Simple. A spend down is designed to bleed off enough of a person's income to keep him or her at the poverty level in order to remain eligible for Medicaid. The Medicaid Buy-In premium amount, while based on a person's income level, would not be prohibitive, as a spend down is. Medicaid would function in the same manner as private insurance. People would not have to live in poverty. They would not be slapped down every time they try to build a life. They could get jobs at competitive wages and actually pay for the Medicaid services they are currently using at no cost.

How does the Medicaid Buy-In benefit New Yorkers without disabilities? The stories you have just read clearly show that most people with disabilities who need Medicaid can't afford to get jobs because of the punitive spend downs they would pay. Not only are they currently getting Medicaid for free, they are also forced to live on government assistance, such as SSD and SSI, for which taxpayers are footing the bill. The Work and Wellness Act would let workers with disabilities pay premiums for Medicaid coverage and still have enough paycheck left over to live on. Not only would the money they pay for Medicaid ease the burden on taxpayers, those buying into Medicaid would be working and paying taxes themselves. In addition, they would be coming off of Social Security benefits. Everyone wins in this situation.

So, why hasn't the Work and Wellness Act passed and been signed into law? That's a very good question. Perhaps our elected members of the State Senate and Governor Pataki can answer that. Why don't we ask them?

Editor's note: In the latest twist in this Kafkaesque tale, OMRDD plans to require every person who uses its supported employment services to have that service funded by Medicaid. This will mean that people who need supported employment who have developmental disabilities (which is most of them) will be subject to Medicaid spend down rules. Yes! People who use a service whose only purpose is to help them get and keep a job will have huge chunks of their wages taken away from them if they want to keep using that service to keep their jobs so their wages can be taken away from them so they can keep using that service to keep their jobs so...

Got Questions?

Local Senators

Thomas Libous
(518) 455-2677

James Seward
(518) 455-3131

Leadership

Governor George Pataki
(518) 474-8390
Senate Majority Leader Joseph Bruno
(518) 455-3191

by Ken Dibble

Want to live in a group home? Want to send a family member to one? Think twice. These stories are camouflaged to protect the innocent, but they're real stories about real people in real group homes in the Southern Tier.

This issue's story is about a middle-aged guy who uses a wheelchair and has a mild intellectual disability. He's a friendly, outgoing, charming man who is quite capable of working hard and pulling together caring people around him for support-given a chance to meet some. But a lifetime in segregated settings has destroyed his confidence in himself and his abilities. He yearns for real relationships and real purpose in life, but has learned that "all good things come through staff."

People who run group homes claim that people who come to them from larger institutions benefit from the "homelike" setting by assuming real responsibilities for the home and relating more naturally to people around them, and that they get more support due to a higher staff-to-client ratio than exists in big institutions. That's just PR.

Group homes are medical-model institutions. On any given day, several staff are either on vacation, taking sick leave, or covering for absent staff at other houses. When they are there they have schedules to follow and paperwork to do. This is a workplace like any other, and things are arranged efficiently so the workers don't have time to hang around "relating". In the morning, it takes all their time to make sure the "residents" get up, get clean and dressed, have breakfast and get out the door to their mandatory "programs". In the evening, it takes all their time to make sure the "residents" get dinner, take part in the mandatory "recreational activities", and go to bed before the night-shift skeleton crew arrives. The residents have no real responsibility for what goes on in the house because the staff are held responsible for meeting the schedule. Most of the "social" interaction involves staff giving orders and applying "consequences" if they aren't followed.

Most of the staff aren't well educated, and their training is spotty. Some have worked in the "system" for 20 or 30 years, are used to doing things "the old way", and won't change no matter what they are told by whom. Their unions, when they have them, back them up; when they don't have unions, well, experienced staff are hard to replace in this labor market, so they don't get fired unless they get caught red-handed doing something outrageous. When one of these people works in a house, eventually all the other staff end up doing things the same way because the experienced staff do the day-to-day training and supervision of "newbies". Newer staff come and go frequently as they find better jobs.

So this man is surrounded in his "home" by people some of whom don't know him, some who have real attitude problems, all of whom are usually too busy to think much about his needs, and on whom he feels-and is-dependent for survival. If he has a problem, they treat him like a naughty child and scold him instead of helping him think through the problem and find a solution. When he is upset they demand that he instantly stop showing how he feels. When he is anxious they tell him to "get over it." This doesn't work. Would it work for you if your family had shoved you, as a child, into an institution where you were surrounded by people who abused, neglected, ignored, or infantilized you?

This is a "clinical" setting, with "treatment plans" for everything. One of this guy's plans calls for him to lose some privileges if he does something truly inappropriate. But the staff use the plan as a club to enforce their will; whenever he doesn't follow their orders they take something away from him and use the "plan" as an excuse, even though this sort of thing is not in the plan. The plan is supposed to be binding on everybody who works with the consumer, but the staff repeatedly refuse to follow formal written instructions on how to use the plan correctly. There is no "plan" for staff who disobey, but there is something like the infamous police "blue code of silence", wherein the staff cover up each others' misdeeds and never turn each other in.

Could this man get better service if he complained to the management of the agency that runs the house? Perhaps, in time-probably a long time. In the meantime, his complaint would be investigated, and then when the investigators went away, the staff would retaliate in very unpleasant ways. Would you complain under these circumstances? Would you live in this place? If not, why would you ever send somebody you love there?