AccessAbility

(This is an abridged version of an article from the Rochester Center for Disability Rights website; used by permission. -- Editor)

On July 13, 2006, disability activists from Rochester, Binghamton, Albany, and as far away as Chicago made their voices heard at the Alden March Bioethics Conference being held in Albany.

At approximately 1:30 pm, the group, wearing a colorful array of ADAPT and Not Dead Yet t-shirts, marched single-file up the steep hill of State Street to their destination. CDR Executive Director Bruce Darling and Not Dead Yet (NDY) activist Stephen Drake led the way. The conference had not yet begun. The group strode in front of the conference presenters, podium, and PowerPoint projector screens, filling the front of the hall. They pulled out protest signs with slogans such as "Not Dead Yet", "Democracy not Dictatorship", "ADAPT" and, perhaps most importantly, "Nothing About Us Without Us!" Chris Hilderbrant led the group in a chant: "NOTHING!! about us. without us!" The group chanted as loud as they possibly could. Other advocates went through the conference room, to pass out flyers about the lack of involvement of the disability community in a conference about bioethics issues that so critically affect our community.

Half of the conference attendees seemed confused, leaving the room at a brisk pace. The other half seemed unsure of whether to take the flyers, but the majority took them, to read and discuss with their neighboring conference attendees. Others approached the group to ask questions and find out more about the issues around disability rights. A few took out cell phones and began taking pictures and video streaming the events as they unfolded!

Bruce Darling, Shelly Perrin, Mike Volkman and Stephen Drake became the negotiating team with the conference organizers. As a result of their discussions, Drake was able to speak in front of the full conference. As Bruce put it, "He actually became the Keynote Speaker for the conference!"

Stephen spoke of the mission of NDY and how people with disabilities have been dismissed by both sides of the "cultural war". He gave personal examples of how people with disabilities are critically affected by bioethics issues, including the story of Rochesterian Joe Bonomo and the difficulty he had getting his own doctor to serve him at home after he had a series of strokes. He also shared the story of a 4 year-old girl with autism who was murdered by her mother. Instead of sympathy being garnered for the murdered girl, the media empathized with the mother who killed her! That is why the disability community needs to have its voice heard at the bioethics table.

When Stephen ended his speech, he was met by powerful applause followed by contemplative silence. The activists slowly made their way outside as the conference recessed for a short period. Drake was invited to stay but elected to leave with rest of the group. A number of attendees came forward to express their support of the action; other conference attendees asked group members more about why we were here. We left them with flyers, information and website links that would hopefully be both helpful and insightful.

After success at the bioethics conference, the group decided to pay a visit to Bob Sherman, from the Long Term Care Restructuring project, who is working on a "mega-waiver". Chris Hilderbrant and the crew walked the distance from the hotel to One Commerce Plaza. The crew entered the plaza and, in small groups, went up to the 8th. floor.

Just the day before, Bruce Darling had participated in an Advisory Group meeting about the waiver. He was deeply concerned because it was clear that the waiver was being designed to meet the needs of various groups, like the counties and provider agencies, but that the needs of consumers, particularly those with the most significant disabilities, were being overlooked.

Once situated, Bruce called Bob Sherman, the head of the Long Term Restructuring initiative, to see if he would come out and talk to the group. Bob asked how many people were with Bruce.

Bruce replied, "about 40."

Bob retorted, "Really Bruce, how many people are there?"

Bruce held the phone out and asked everyone to say "hi" to Bob. The crowd shouted back "Hi, Bob!"

Bob told Bruce he would be right out.

When he came out, you could see the awe in his face, gathering us all in, and having to listen to real stories about the importance of personal care. Sherman promised the group that if we scheduled a formal meeting, he would attend to listen even more.

In mid-August, President Bush angered members of his own Republican Party, as well as the National Governors Association (NGA), by proposing regulations that would significantly cut Medicaid funding for the states by means that Congress rejected last year.

Bush wants to end Medicaid kickbacks from providers to states. The kickbacks, often called "provider taxes", "fees", or "surcharges", let states collect more federal Medicaid money than their percentage share entitles them to.

Here's how it works: Each state is entitled to recover a percentage of its total Medicaid spending from the feds. New York's share is 50%. The state includes in its spending reports the total amount it pays to Medicaid service providers, and collects 50% of that from Uncle Sam. But then it recoups some of that spending from providers via the surcharges, which means the state did not actually spend the entire amount that it reported.

Many Congressional Republicans as well as Democrats, in both houses, are outraged that Bush is trying to stop this practice by modifying the Medicaid program regulations after Congress explicitly rejected the idea during the Deficit Reduction Act (DRA) debate. They have allied with the NGA in expressing strong opposition to Bush's proposal in writing, stating that it "would seriously disrupt financing of Medicaid programs around the country."

These kickbacks are legal and have been approved by previous federal administrations. Stopping them will clearly reduce the amount of federal Medicaid money that states get, which is a bad thing, especially in light of the serious cuts to Medicaid programs that the DRA now allows states to make (see AccessAbility, Spring 2006). However, STIC's position is that they are an inappropriate dodge that increases administrative costs for both the state and providers, and should be stopped. Advocates in NY should focus on getting the feds to raise their share of the state's Medicaid costs, which, at 50%, is the lowest in the nation. Other states, including Delaware, New Hampshire, and Minnesota, with far smaller proportions of Medicaid recipients than New York, also get 50%. Most states get between 55% and 70%, and the highest is 76%.

In June, disability rights lawyer Steve Gold reported that 2006 funding for federal Housing and Urban Development housing vouchers was increased by 3.5% over 2005. This restores more than half of the vouchers that were lost in fiscal year 2004-05.

New York State's voucher total was increased by 9,969. Among those, Binghamton Housing Authority got 51 new vouchers for FY 2006. However, Public Housing Authorities (PHAs) that don't use all of the allocated funds will lose them next year.

These vouchers are for low-income people, including but not limited to people with disabilities. PHAs have discretion in how to use them. It's important for disability advocates to meet with PHA heads to ensure that they are used to address the critical shortage of accessible low-income housing in our communities.

A recent uproar occurred over a new federal law designed to keep illegal immigrants from getting Medicaid. The law, which took effect on July 1, requires Medicaid recipients to provide proof of citizenship.

A spokesperson for Congressman Charles Norwood (R-GA) was reported as saying, "Medicaid programs across the country face a funding crisis, and the feedback we're getting is that a lot of the financial pressure is coming from illegal immigrants." However, the US Department of Health and Human Services' Inspector General issued a report last June that indicated "no widespread citizenship fraud in Medicaid."

Disability advocates protested the new law, pointing out that many citizens with disabilities, including elderly people in nursing homes, people with developmental disabilities, and African and Native Americans, may not be able to lay their hands on birth certificates or have driver's licenses. They could be forced off Medicaid rolls, advocates said, with severe damage to their health.

Following a lawsuit over the issue, the federal Centers for Medicare and Medicaid Services (CMS) announced that they had found a typo in the law. The law says the requirement for proof of citizenship "shall not apply to an alien who is eligible for medical assistance" from Medicare or Medicaid. CMS says Congress "meant" to say "citizen" instead of "alien", and that people who are already enrolled in these programs, or who receive SSI, will not be required to furnish proof of citizenship.

CMS also said that state records for food stamps or welfare assistance can be used to document citizenship, and that in extreme hardship cases, people will be able simply to submit an affidavit saying they are citizens. If that's the case, they might as well just repeal the law--but we're glad that CMS cleared this up anyway.

In October 2004, the NYS Department of Health (DOH) closed its New York City office, which used to handle downstate requests for Medicaid coverage of durable medical equipment (DME). This ignited a firestorm of complaints that led to hearings by two State Assembly committees and a scathing report on DOH malfeasance and incompetence. Although the NYC closure sparked the uproar, committee members learned, with apparent surprise, that unfairness and unresponsiveness in DOH's DME program have been going on across the state for years.

Durable medical equipment (DME) is stuff that people with disabilities use to maintain or improve health, mobility, or independence, that lasts a long time, and that is not individually designed or built for them (though stock items may be modified for individual needs). This includes wheelchairs, shower or bath chairs, commodes, and the like.

The Assembly report, Delaying Necessities, Denying Needs, found DOH's Medicaid DME prior approval process to be plagued with horrendous delays and illogical denials. The reasons include: unqualified, poorly trained staff making determinations that are often based on personal bias rather than objective medical knowledge; demands for irrelevant or redundant information from applicants; failure to monitor the timeliness of the process or its results; irrational handling of people who are dually-eligible for Medicaid and Medicare; and failure to treat Fair Hearing reversals of DME denials as binding precedents. The report states that most of these practices violate DOH's own regulations. And it echoes, without endorsing, the widely-held belief among equipment providers and disability advocates that these practices are deliberately intended to delay and reduce Medicaid spending.

When the NYC office, which processed about two-thirds of all DME requests in the state, was closed, its operations were moved to Albany. DOH made conflicting claims about staffing, first saying new staff were added but later that the number of staff in the Albany office had not changed. As a result, a bad situation got dramatically worse.

It may be claimed that the essentially one-party nature of the Assembly's investigation, along with the report's less than objective language, indicate a political attempt to embarrass the Pataki Administration's DOH. However, as we've reported many times, DOH has plenty to be embarrassed about. Particularly on point was Darlene Dickinson's harrowing tale of a woman who tried to get Medicaid funding for a motorized shower transfer device (see "Medicaid Madness" , Summer 2005). The Assembly report is full of anecdotes just like Dickinson's.

Anecdotal evidence can be misleading, but the Assembly had trouble getting hard facts. DOH officials were unable or refused to provide documentation on several points despite repeated requests, instead preferring to repeat unverified verbal claims. For example: DOH officials have a huge new computer system called "eMedNY". However, it can't tell them how many "pending" (not yet resolved) DME applications they have on file. Instead, they told the committees and the media that they approve "95%" of applications. Without knowing how many applications they've received, it is mathematically impossible to find out what percentage of them are approved.

NYS Medicaid regulations require DOH to approve or deny DME requests within 21 days of receipt. However, a witness from a large service provider testified at Assembly hearings that before the NYC office closed it typically took 2-3 months to get an application approved, and that after the closure the wait grew to 9 months or more.

One reason for this is that DOH gets to "stop the clock" when they request more information from an applicant, and restart it when the information is received. However, witnesses testified, the information that DOH requests is often irrelevant or already in DOH files. For example, when a person requested a new wheelchair because hers was 8 years old and worn out (wheelchairs typically last about 5 years), DOH demanded the original invoice for the old chair. The old invoice had no relevance to approving a new wheelchair, and DOH should already have had a record of the old one's make, model, features and cost, since they'd approved its purchase. It is common for DOH to make people submit medical exam results documenting permanent disabilities such as cerebral palsy or quadriplegia each time they request a DME item--even though DOH knows the disabilities are permanent.

eMedNY, which cost $375 million, can't produce a count of applications that were resolved within 21 days. The best DOH officials could do was claim that 7 applications taken in a "random sample" over two years were resolved on time. As any statistician knows, a random sample of 7 out of tens of thousands is meaningless. Experts in providing services to people with disabilities told the Assembly that many DME applicants simply give up after months of delays and repeated requests for information, and that sometimes applications never receive a final response at all. So it's likely that DOH's DME approval rate is well below 95%. To be fair, DOH reported, and the Assembly acknowledged, that some delays are the fault of vendors who don't turn around the paperwork as fast as they could. However, that doesn't excuse the demands for irrelevant and redundant information.

Nor does it excuse a system that is supposed to make medical decisions on clinical evidence for issuing denials for reasons that can only be described as ignorant. Here are examples from the report:

"A 55-year-old man with cerebral palsy, mental retardation and visual impairment, who is married and works, needed a new tub chair, as the one he had successfully used for more than 10 years was broken ... His physician and physical therapist requested a new ... chair. While waiting, he received sponge baths from a home health aide. Initially DOH claimed a `procedural error' on its end delayed by a month the first missing information letter it sent his provider. After one year of back and forth with DOH, a DOH reviewer sent another missing information request. It did not deny the item, but suggested the patient should `break away' from his preference for this piece of equipment and `it is not clear why he needs to be submerged in his tub.'"

"A physician, two therapists and a nurse together signed a letter requesting a power wheelchair with power tilt for a 61-year-old man ... who could not walk, had a skin ulcer at the base of his spine and was well over 300 pounds. The power tilt would enable him to relieve the pressure on his lower spine so the ulcer would not worsen. DOH approved the wheelchair, but rejected the power tilt, saying `power w/c is for mobility only it is not a lazy boy recliner substitute.'"

"A mother requested a shower chair so that she could wash her 40- year-old daughter in the tub. Without it she would have to hold her up and wash her at the same time. One reviewer wrote on a prior approval request: `.while the notion of independence is a desirable benefit, it is not medical in nature.'"

These determinations aren't lust condescending, they're wrong. DME purchases must be "medically necessary". However, the definition of this term is not a matter of opinion; it is set out clearly in state regulations as follows: "... requested [items] would: meet the recipient's medical needs: reduce the recipient's physical or mental disability; restore the recipient to his or her best possible functional level; or improve the recipient's capacity for normal activity. [This] must be determined in light of the recipient's specific circumstances and ... functional capacity to use or make use of the requested [items]."

When DOH turns down a DME request, more hours of attendant service are often required to accomplish what the equipment was designed to do. This not only reduces the "recipient's capacity for normal activity", it usually costs more over time than buying the device would have.

Wrong determinations result from poor training and DOH's failure to heed regulations that require DME orders written by doctors to be reviewed by medical professionals with the same level of expertise, in the same specialties, as the doctors who wrote them. As best the Assembly could tell, determinations are commonly made by nurses or therapists who may or may not have any expertise in the areas they review. Despite repeated requests, DOH refused to provide information on the education, training or licensure of its reviewers to the Assembly.

50% of all DOH's DME rejections that are appealed are overturned. However, DOH is not required to treat these decisions as binding precedent and revamp its procedures accordingly. The report claims that the regulations "advise" DOH to do so, but that's not what the regulations say. They say that DOH "may" do so. If they were "advising" such a course of action, they would say "should" do so. We think the regulations should say "must" do so, and the Assembly report should have recommended this change.

We must say that we're uncomfortable with the report's complaints that DOH refuses to buy strollers for children who are of walking age but will approve wheelchairs for them, although strollers are cheaper than wheelchairs and more convenient for parents. Kids can't move themselves around in strollers but they can in wheelchairs (sometimes power chairs with specially-adapted controls). Two principles of the disability rights movement are age-appropriateness and independence. Mobility devices aren't about convenience for parents; they're about independence for the child. Children with disabilities who are of walking age should always receive mobility-related equipment that they can control themselves. We're aware that DOH often refuses to pay for appropriate adaptations to manual or power wheelchairs so people can use them independently, but that doesn't justify treating children who are old enough to walk like infants or toddlers and toting them around in oversize strollers.

The report described a class of people who are eligible for, but can't get, DME through NYS Medicaid: those who receive both Medicare and Medicaid, the "dual-eligibles". DOH says Medicaid is a funder of last resort, and requires "dual-eligibles" to apply to Medicare first. However, Medicare will only consider paying for DME after it's been purchased, and NYS Medicaid won't pay for equipment that wasn't approved before purchase. Most "dual-eligibles" are among our poorest citizens; they can't afford to lay out funds even temporarily for expensive equipment and hope that Medicare will reimburse them. But when those who manage to borrow or beg the money take that gamble and are turned down by Medicare, DOH won't consider their claims. A state appeals court found that this doesn't have to happen. NYS Medicaid regulations say nothing about requiring people to try Medicare first; "approval" and "purchase" are two separate acts and DOH can conditionally approve a request before the person goes to Medicare and, if Medicare turns them down, pick up the cost. But DOH refuses to change its procedures.

Although DOH's DME approval process treats people with permanent, previously-documented disabilities as though they were trying to commit Medicaid fraud, the department's oversight of equipment vendors, who have historically committed most DME fraud, is lax. Once an item is approved, DOH notifies the vendor, who is responsible for delivering it. However, DOH doesn't know how many items were actually delivered. DOH randomly sends out 5,000 letters to Medicaid recipients each month asking if they received the requested equipment. If the person answers "no", DOH investigates but, incredibly, if the person doesn't respond at all, DOH does nothing. We recently reported massive Medicaid fraud uncovered by the New York Times. One of the cases involved a dentist who claimed to have treated nearly 1,000 patients in a single day. If a vendor filed claims for 1,000 nonexistent DME customers with fake addresses, DOH might never find out about it.

The Assembly report also raised questions about why the NYC office was closed. DOH officials said it wasn't handling claims correctly, and eventually (a year after the Committee Chairs requested it), they provided a copy of a 2001 letter from DOH to the office's acting director listing serious issues, including "approval of funding for items not covered by Medicaid ... and a lack of invoices on file to substantiate payment". DOH also said it closed the office because it couldn't find a qualified person to replace this director, who had been "acting" for 20 years, and that another reason was to "standardize" the DME approval process across the state. So DOH couldn't find a qualified administrator to run the office for 23 years, and kept a presumably unqualified "acting director" on the job for that period? It seems likely that DOH didn't really try to replace the director--and that actually does fit in with the claim that they had to close the office in order to standardize procedures. A well-run state government would simply standardize the procedures, require the regional directors to execute them, and replace them if they didn't. But as we've seen with OMRDD's regional offices and the state's social services bureaucracy, the people "in charge" in Albany rarely, if ever, actually tell their underlings in the rest of the state what to do and make it stick.

DOH, while not acknowledging all of the cited problems, claims that the Assembly report is "outdated" and that during the 18 months since the Assembly began its investigation, DOH made significant improvements to its DME system. For example, a physician was hired to train and oversee claims reviewers. The Assembly Committee Chairs, as well as disability advocates across the state, say that while there has been a slight improvement, the problems cited remain widespread and persistent. They also point out that one doctor cannot possibly ensure quality when tens of thousands of claims are processed each year, and that DOH continues to refuse to provide documentation on training for reviewers or even to tell the Assembly how many reviewers it has.

On August 17, Governor Pataki vetoed some 70 bills passed by the State Legislature. Among them were several of interest to the disability community, most (but not all) of which would have been beneficial.

The so-called "SHU Bill" would have forced state prisons to stop placing mentally ill inmates in solitary confinement in "special housing units", or SHUs, and instead refer them to appropriate treatment programs. According to disability advocates, about 8,000 state prison inmates, or 12% of the total inmate population, have mental illness. They are there primarily due to NY's decades-long failure to adequately fund community-based mental health services in tandem with its laudable process of closing psychiatric institutions. Solitary confinement causes the condition, and behavior, of inmates with mental illness to deteriorate. Many prison officials would prefer a treatment-focused alternative, but Pataki said he vetoed the measure because those officials need discretion to control inmates. However, he also claimed it would cost over $300 million--which is probably his real reason.

The Public Accommodations bill, a longstanding item on disability activists' legislative agendas that would have brought ADA Title III provisions for access to stores, restaurants, theaters, medical facilities, and some forms of transportation, into the state Human Rights Law, was vetoed. Pataki claimed "technical reasons"; that because the Human Rights Law covers some government-operated programs, such as the NYC Metropolitan Transportation Authority, it would subject those programs to conflicting mandates. Members of the Senate originally raised this objection, whereupon advocates worked with them to rewrite the bill to remove those concerns. However, in an action that seemed inexplicable at the time, the Senate leadership chose to pass the original bill instead. Now advocates are wondering if this was intended to ensure a veto while taking the pressure off the Senate leadership.

Pataki vetoed a bill to require DOH to hold public hearings on proposed changes to the Medicaid State Plan. This would have let advocates shine the light of day on his secretive "Mega-Waiver" planning. Pataki clearly recognized this and cited a "separation of powers" issue in his veto memo. That issue is bogus. He knows he doesn't have the authority to make such changes on his own; if he did, he wouldn't have asked the legislature twice to grant him that power. His claim that the bill would put the state's Medicaid funding at risk by keeping DOH from submitting State Plan changes to the federal government in a "timely" manner is nonsense. The feds don't require states to make changes to existing approved plans; if Pataki wants to initiate changes to a critical program that affects the health and lives of more than 2 million New Yorkers, the onus is on him to take into consideration the time needed to get and respond to an appropriately substantial amount of public and legislative input when planning his schedule.

A bill that ordered DOH to apply for a federal "Cash and Counseling" demonstration grant was vetoed. "Cash and Counseling" is an approach to providing personal assistance services that involves training the service recipient and giving them direct control of the money to pay attendants. Pataki said such a program should only be set up within the context of his plans to "restructure" Medicaid, presumably including his service-capped "Mega-Waiver" plan.

Pataki nixed a bill to create a state waiting list for housing for people with mental illness because it would require people seeking housing to be listed regardless of whether they are eligible for existing programs. The intent of the bill was to make sure that the state Office of Mental Health has complete information on housing needs, precisely so they can address insufficiencies caused by the eligibility rules of existing programs. This veto excuse was bogus.

A bill to create a state Interagency Council on services for people who are deaf, hard-of-hearing, or deaf-blind was vetoed. Pataki agreed with the State Education Department, which said that such a single-disability program is counterproductive to ensuring holistic services and better community integration. This is STIC's position also.

Pataki vetoed a bill to increase state oversight of assisted living facilities. He said it would have taken funds away from DOH's program to provide oversight of adult care "homes", which, if true, is not a good idea given the sorry state of those facilities.

A bill to put the last three numbers of a person's drivers license, or non-driver ID, number on handicapped parking permits was vetoed. The idea was to prevent abuse of the permits. Pataki said that the Department of Motor Vehicles didn't want to deal with it, nor would the police be likely to make use of it. He's probably right about the latter. In any case, it's a bad idea. It's perfectly legitimate for a person with a disability to have a nondisabled friend, neighbor, or family member drive them somewhere and park in a handicapped spot; the same needs for a wheelchair access aisle and a short distance from vehicle to building apply.

In July Pataki vetoed a measure to place the burden of proof on school districts in Special Education disputes. The bill was proposed after the US Supreme Court ruled earlier this year that the burden of proof lies with the plaintiff, a standard that has always applied to most lawsuits.

The NYS Department of Health (DOH), in an Administrative Directive dated July 20, 2006, announced changes to state Medicaid eligibility procedures in response to the federal Deficit Reduction Act of 2005 (DRA).

As we've reported (AccessAbility, Summer 2006), the DRA increased the "lookback" period from 3 to 5 years for asset transfers for less than fair market value; changed the start date for the "penalty period" resulting from such transfers to the later of the transfer date or the date on which a person becomes eligible for, and begins to receive, affected services; and expanded the definition of affected assets to include some kinds of annuities and trusts.

DOH's Directive provides details that we didn't have in June. The important points are:

1. The new rules apply to people seeking to enter a nursing facility or other institution that provides similar services, and to people seeking any kind of Medicaid Home and Community Based waiver services, including the Long Term Home Health Care ("Nursing Home without Walls" or "Lombardi") program, any of the OMRDD waivers (HCBS and Care at Home), the TBI waiver, and the upcoming new Nursing Home Transition and Diversion waiver.

2. The new rules took effect on August 1, 2006, for any asset transfers that occurred after February 8, 2006.

3. In some cases where you transfer assets to an annuity that continues to provide income to you, you may not be subject to a penalty if you designate New York State as the first or second "remainder beneficiary" for the annuity.

4. NY has adopted the maximum federally-allowed value of $750,000 as its home equity asset cutoff threshold. If you have more home equity than that, Medicaid won't pay for any of the listed services under any circumstances, and you can't use medical bills as a "spend-down" to reduce the equity that is counted against you. The DRA says you can use a home equity loan or "reverse mortgage" to do this, but the Directive doesn't mention this.

5. Here is NY's "undue hardship" policy for waiving the penalty period: "We will not limit your ... coverage if we determine that despite your best efforts, ...you are unable to have the transferred asset(s) returned or to receive fair market value for the asset. We will also not limit your ... coverage if we determine that [it] will result in undue hardship for you. We will consider undue hardship to exist if you: (a) meet all other eligibility requirements, and (b) are unable to obtain appropriate medical care without which your health or life would be in danger, or (c) the ... penalty would deprive you of food, clothing, shelter or other necessities of life."

6. Pataki's proposal to apply a 3-year "lookback" for Medicaid State Plan long-term care services was not enacted, nor was his plan to end "spousal refusal" (see State Budget Final: Back from the Brink).

As we said last time, we don't think this issue affects many people who would truly have a problem obtaining long-term care under the new rules. In any case, this is a very complicated issue, so consult an "elder care" attorney before proceeding with any significant asset transfer.

Following media revelations of widespread abuse of students with disabilities at the Judge Rotenburg Educational Center this spring, the NYS Board of Regents enacted "emergency" regulations on use of "aversive treatments" that at least temporarily stopped the worst practices at the facility, but which are still a cause for profound concern among disability advocates.

The Rotenburg Center is a residential school in Massachusetts. The NYS Education Department (SED) pays to send about 150 NY students to the program because their home districts allegedly can't serve them adequately. The Center has been notorious for several years for its regular use of "aversives"--most notably, electric shocks--on its students, and advocates in both New York and Massachusetts have been trying to get the place shut down.

The use of aversives has always been controversial. However, the NYS agencies that deal most frequently with severe behavior problems, OMRDD and OMH, have long had clear and highly restrictive policies on their use. While SED acknowledges that there are no valid scientific studies that prove that aversives are effective, it has never had a clear policy on them, and some of them, especially mechanical restraints and time-out rooms, are routinely used in special education programs around the state with little or no special oversight.

Whenever these practices are challenged, some parents come forward with anecdotes of how they have helped their children when nothing else worked. Others report that their children have been harmed and that the procedures were done without their knowledge or permission. These "wars of words" are conducted in front of the media, in the hopes that politicians will pressure educational authorities to take one side or the other. Such a "war" erupted when SED began seriously investigating the Rotenburg Center, and the result was, as it usually is, a compromise.

SED officials visited the Center in May 2006 and observed a pattern of abuses leading to "serious concerns for the health, safety, privacy and dignity" of the students. For example, students were shocked while wet during bathing or showering, and "various injuries to students have been reported"; students were shocked for minor misbehaviors such as swearing at or "nagging" staff; students were shocked while already unable to misbehave further because they were in mechanical restraints (various forms of straps and ropes to immobilize all or parts of the child's body); the staff didn't have enough education or training to be working with children with significant emotional and behavioral problems. In other words, electric shock was used routinely as a cheap substitute for humane and effective, but more expensive, techniques such as "positive behavioral supports", by uneducated aides who were given carte blanche to use it whenever a student annoyed them.

The Regents' emergency regulations took effect on June 23. They prohibit use of aversives in all but the most extreme cases. In order to use them, a time-limited "child specific exemption" must be sought as part of the student's IEP (Individualized Education Plan) via a formal request to the Commissioner of Education, and must be approved by a special state review panel. An exemption can only be approved to address serious self-injurious or violent behavior, only as one part of an individual behavior plan that also includes positive behavioral supports, and only if other well-designed behavioral interventions have been tried and failed. Aversives can never be used purely as punishment, nor can they be applied to a student who is already in mechanical restraints, nor can any automated system be used (such as motion-sensors that deliver a shock if the motion is sufficiently quick or forceful). Schools serving NYS students had to submit written policies to the Commissioner by August 15 detailing how they will meet these requirements, which take effect on October 1.

All of this sounds very reasonable--and it would be, except for how the regulations define "aversive treatment".

Here's the definition: "application of noxious, painful, intrusive stimuli or activities intended to induce pain such as electric skin shock, ice applications, hitting, slapping, pinching, kicking, hurling, strangling, shoving, deep muscle squeezes or other similar stimuli; any form of noxious, painful or intrusive spray, inhalant or tastes; withholding sleep, shelter, bedding, bathroom facilities or clothing; contingent food programs that include withholding meals or limiting essential nutrition or hydration or intentionally altering staple food or drink in order to make it distasteful; movement limitation used as a punishment, including but not limited to helmets and mechanical restraint devices; the placement of a child unsupervised or unobserved in a room from which the student cannot exit without assistance; or other similar stimuli or actions."

We'd like to present the fairest possible interpretation here. This is, after all, the list of things that the new regulation prohibits, except when a "child specific exemption" is obtained after school officials get past all the quite narrow hoops that they must jump through to obtain it.

But ... "withholding...bathroom facilities"? "limiting essential nutrition or hydration"?? "punching"??? "kicking"??? "hurling"??!! "strangling"???!!!

We have to assume that, due to the emergency situation, the Regents didn't look closely at these regulations, and didn't realize that they use the same language for what is prohibited and what can be "exempted". The US Supreme Court recently ruled that making prisoners--convicted criminals--with disabilities sit unattended in their own urine and feces is cruel and unusual punishment. We're pretty sure the Regents didn't intend to let school officials apply to be allowed to do it to disabled children with behavior problems. And we're quite sure the Regents don't want teachers to starve students, beat them up, throw them across the room, or strangle them, in order to "treat" their behavior. However, that's how these regulations read.

A public comment period on the regulations ended on August 28, and by the time you read this, the Regents may have already voted on a permanent regulation to follow the emergency rule. We hope that when that happens, not only will the Regents have removed the most vicious, dangerous and brutal "options" from the list of things that can be approved, but that they've removed all of the items that cause pain, including electric shock of any kind.

There are just some things that are beyond the pale. The parents who stand up for these procedures on the grounds that their children have been helped by them are among the most desperate people on earth. After years of being ignored or disappointed by incompetent educational and medical practitioners, who have botched the job with their kids out of ignorance, arrogance, or just simple unwillingness to spend money, they've found somebody who treats them nicely, promises to make all their problems go away, and then takes their kids behind closed doors and terrorizes them so that during parental visits they'll behave better. Desperate people always want to take desperate measures. One of the most basic reasons why we have governments is to stop them from doing it. SED has no business compromising with desperate people on horrific physical abuse of children who, for the most part, lack the intellectual or cognitive ability to even understand what is going on, no matter how much noise those people make or how many politicians they manage to get on their side.

On July 26, 2006, NYS Attorney General and Democratic gubernatorial candidate Eliot Spitzer, and his running mate, NYS Senate Minority Leader David Paterson, who is legally blind, took part in a teleconference in New York City that included people with disabilities and their advocates from across the state. The event was arranged by the Disabilities Network of New York City. Here are the highlights:

Spitzer's opening remarks focused on three items: the state's stalled Most Integrated Setting Plan, reconstitution of the NYS Office of Advocate for People with Disabilities (OAPWD), and enforcement of the federal Help America Vote Act (HAVA) in New York State.

He said the fact that the Most Integrated Setting Coordinating Council has failed to produce a plan is an "abdication of responsibility". He said the state should have a plan that specifically addresses the US Supreme Court Olmstead decision's guidelines for ensuring that states do not unnecessarily institutionalize people with disabilities, but he was cautious about what such a plan might achieve given the state's current programs and finances.

Spitzer discussed at length the idea that OAPWD, which was merged with the NYS Commission on Quality of Care (CQC) last year, should be beefed up and, by implication, independent.

He also noted that a federal court ruled the state to be in violation of HAVA for failing to create a plan to provide accessible voting machines to election districts, summarized his involvement in suing county Boards of Election for not providing accessible polling places, and said that HAVA enforcement would continue to be a priority for him.

Paterson's opening remarks covered much of the same ground, but he also said that Timothy's Law, a bill to require health insurance plans to provide equal coverage for physical and mental illnesses or injuries, "must be a priority when we get to Albany."

In response to a question from STIC's Frank Pennisi, Spitzer said he would support passage of a bill to incorporate the ADA's Title II provisions governing conduct by state and local governments into the state Human Rights Law.

Spitzer also answered a question from NYS ADAPT leader Bruce Darling regarding how he would ensure that the needs and voices of people with disabilities will be heard in any Medicaid reform plan. He said that the growth in Medicaid spending "can't continue", that the focus of his plan will be to cut the costs of Medicaid long term care, and that his idea of ensuring that the disability community has input is to strengthen OAPWD. He made no commitment to avoid cutting personal assistance services, and he gave no indication that he would involve people with disabilities who are not members of his administration in his reform planning.

In response to a question about how a Spitzer Administration might use federal "Money Follows the Person" grants to ensure that more people can receive long-term care in their own homes rather than institutions, Senator Paterson gave a long response that began with a claim that the growth in state expenditures has been exceeding growth in revenues, went on to blame Governor Pataki for that state of affairs even though Paterson's Senate had recently overridden billions of dollars worth of Pataki vetoes of such spending, and ended with the statement: "What can people with disabilities expect from a Spitzer-Paterson Administration? REALITY."

STIC does not, and cannot, endorse or oppose specific candidates for political office. We can, and do, analyze public policy statements.

In the period before the 2006 election, Spitzer's and Paterson's opponents provided little opportunity for AccessAbility to report on their positions. However, when asked to comment on Spitzer's remarks, his leading Republican opponent, John Faso, said, regarding the OAPWD-CQC merger, "That was done as a cost-savings measure, so I don't understand why, one year later, he would propose to recreate this bureaucratic structure. It again makes you think about his commitment to containing the state bureaucracy and state spending". And he said that cutting state spending and mandates, and state and local taxes, are his priorities.

It is fair to say that ensuring and increasing the availability and use of integrated, community-based supports for people with disabilities, nearly all of which are funded with Medicaid long-term care dollars, has been the top priority for disability advocates across the state for well over a decade. HAVA enforcement and Timothy's Law have been relatively high-priority items as well, as has a Title II bill. While most disability advocates opposed the OAPWD merger last year, many of them had criticized that office for ineffectualness in the past, and STIC is not aware of any significant grassroots movement calling for its recreation.

Insiders have speculated that a recognized NY disability community leader may be appointed to head a reconstituted OAPWD in a Spitzer Administration. Like all previous holders of that position, any such appointee would be an employee of the governor and could not be regarded as an unfettered spokesperson for the disability community. If Spitzer wanted to make damaging cuts to community-based services, it is more likely that this person would either be compelled to support those cuts or to resign than that s/he would be able to stop them.

In both the Cuomo and Pataki Administrations, people with disabilities used the divided state legislature and personal animosity among the state's top leaders to thwart those governors' most damaging proposals. Spitzer was favored to win in most polls at press time, and some political pundits were speculating that the Democrats could take control of the State Senate. If both of those things happen, in our view, the disability community would have little leverage to block bad legislation. The Deficit Reduction Act of 2005 made dangerous changes to federal Medicaid rules to let states severely reduce the quantity and quality of integrated community supports for people with disabilities. A one-party government could implement those changes with impunity.

Governor Pataki, Senate Majority Leader Bruno, and Assembly Speaker Silver kept negotiating, amidst lawsuits filed by healthcare unions and lobbyists, after the state budget veto override/constitutional crisis blew up last spring. As a result, the worst remaining healthcare budget cuts were restored for Fiscal Year 06-07. Here they are:

1. The emergency Medicaid "wrap-around" of Medicare Part D for "dual eligibles" will continue to January 1, 2007.

Before that date, NYS Medicaid will continue to pay for any medically necessary medication for "dual eligibles" that Medicaid ordinarily covers and that is not covered by the person's Part D plan. Pharmacists must first try to bill Part D for the medication, and when that's rejected, they can bill Medicaid. They can do this in minutes, before you pick up your prescription.

On January 1, 2007, the emergency coverage for all medications will end. What will remain is the Part D "wrap-around" for "dual- eligibles" that we described last issue. That program covers just four Part D-approved drug classes, plus medically-necessary drugs that are excluded by federal law from basic Part D plans. Within the four classes, it covers drugs that are not on the plan, as well as cases where the plan won't cover the entire prescribed dosage or when a plan's "utilization management" procedures, such as stepped therapy, aren't appropriate for the patient. The same "Part D first" billing procedure must be followed. DOH "expects" patients and their doctors to use the Part D appeals process to get necessary drugs covered, but doesn't appear to be requiring them to exhaust their appeals before it will pay for the drugs. DOH has also clarified that while Part D can't pay for labor or equipment costs for home-infusion medications for "dual eligibles", Medicaid will, and providers need to cooperate to arrange these treatments and bill both sources appropriately.

2. Spousal refusal remains intact.

This is the means by which people seeking Medicaid-funded community- based long term care can exclude their spouses' incomes from the Medicaid eligibility determination process. It is analogous to the "spousal impoverishment" rule for people seeking nursing home placement.

3. No transfer of assets penalties for people seeking Medicaid State Plan long-term care services.

These services include Certified Home Health Aides, Personal Assistance Services, and CDPA.

Note, however, that federal "lookbacks" and penalties do apply to all NY Medicaid waiver long-term care programs, including the new Nursing Home Transition and Diversion waiver once it starts (see "Save Your Assets").

4. Family Health Plus emergency co-pay increases were not implemented.

Co-pays for emergency room visits for people in this program will not increase, and emergency rooms are still required to serve people who can't afford the co-pays.

As part of the deal to restore these programs, Senator Bruno got his pre-election-day school tax rebates. Governor Pataki's charter school increase plan appears to be dead, but it appeared that his TANF ("welfare") proposals were still on the table for the fall session.