A Plea for Software Sanity

by Ken Dibble

Most of you recognize me as the Editor and principal writer for this newsletter. That's only a small part of my job, though. About 85% my work is with STIC's computers, computer network, and data management software development. This part of my job has grown steadily since the mid-1990s, and my job title recently changed to reflect that. I'm now STIC's Information Technology (IT) Coordinator.

Some of you may remember early computer systems for word processing and fiscal management. STIC's first "computer" was a dedicated word processing machine. It had a monitor and keyboard built into a sit-down console--a real piece of furniture--and its processor was a separate unit the size of a dorm- room refrigerator. It used 8-inch floppy disks to store data. That system no longer works. We can't even access the documents that were created on it.

Later we moved to DOS-based personal computers. We used WordPerfect for word processing and desktop publishing, and Lotus 1-2-3 for fiscal stuff. We had access to email and the web using text-based software. I wrote database programs using a clone of that old favorite, DBase III+. Those systems did everything we needed them to do.

After a few years, though, state agencies began demanding that we move into the Windows world so our electronic files would be compatible with those of the state. We held back on that for a few years, because unlike DOS-based systems, Windows was not truly accessible to people with all--and especially visual--disabilities. Once decent screen-readers for Windows came out, we made the transition.

Our files came along--sort of. Many of them needed much formatting work to make them readable. We'd invested a lot of money in dot-matrix printers; they didn't work well with Windows. We also had a very expensive laser printer for publications; it wouldn't work with Windows at all. Yes, dot-matrix doesn't look as nice as inkjet or laser, but we are a not-for-profit agency that lives on the taxpayers' money, not a book publisher. The new printers didn't provide any real added benefit to STIC, but they sure cost a lot of money.

And that was just the beginning. Since we started using Windows, we've been through several more cycles of so-called "upgrades" forced on us because older versions of Windows or other software were no longer being sold, and newer versions required more powerful hardware. The so-called "licensing" systems for software grew more and more restrictive and expensive. What are we using these new expensive systems for? The same things we used them for in 1990--word processing, spreadsheets, accounting, desktop publishing, email, and web-based research. We have gained no added benefit from all these "upgrades" and today computers are still less accessible to blind users than they were in the DOS era.

This is a familiar story for many of you, I'm sure. And many of you are probably thinking, "Yes, all that's true. But what can we do? The computer industry is controlled by a huge software near-monopoly, and we do, after all, have to keep our stuff compatible."

It's not well-known yet, though it will be soon. There are viable alternatives. You may have heard of the Linux operating system, a competitor to Windows. You may have heard that it's "free", and that it's very hard to use. Those are just two of the myths surrounding Linux:

Myth 1: Linux is free. Yes, if you're a computer guru you can get some versions of Linux for nothing more than what it costs to download data and burn a CD. This is a good idea for not-for-profit agencies-but only if you are, or have access to, a computer guru. If not, then you can buy single copies of many Linux versions for your agency at a cost well-below that of Windows XP. And one is all you have to buy. Unlike Windows, there are no "per-seat" licenses for Linux. You can install from that one disk to as many computers as you need.

Myth 2: Linux is hard to use. Many Linux versions today have very nice graphical desktops, much like Windows. Things are a bit different in Linux--but not much different than the differences between the last 5 Windows versions.

Myth 3: There's no software. It's true that there aren't yet Linux equivalents for many specialized Windows programs or games. But there are very good programs for word processing, spreadsheets, "slide-show" presentations, email, web surfing, desktop publishing, graphics creation and editing, and more. This is 95% of what most office computers are used for. And many versions of Linux come with all of this software already installed.

Myth 4: Linux is hard to install. Most versions of Linux will install as easily as Windows-- some are easier--and they work "out of the box" with nearly all computer hardware. There are exceptions for so-called "win modems" and "win printers". If you connect to the internet across a network and use laser printers, as many not-for-profits do, this won't be an issue. If not, then yes, hardware modems and low-end laser printers will cost you something, but not nearly as much as separate licenses for each copy of Windows, Office, PageMaker, etc. do.

Myth 5: Linux files aren't compatible with Windows. Linux-based software can read and save data in all popular Windows file formats, with 100% reliability. Sometimes it takes an extra step or two to do that, but it's not in any sense difficult.

On top of this, Linux is, by design, far less vulnerable to viruses and spyware than Windows. Unlike Windows, Linux almost never freezes or crashes. Many Linux versions have built-in accessibility features, and there are screen-readers that will work with it.

And there's a larger issue. I mentioned that we can't access our old word processor files, and our DOS files took a lot of work to bring into Windows. All of us are far more dependent on electronic data today than we were back in 1985 or even 1995. Can you, your agency, or your local, state or federal government afford to wake up one morning and be told that the big software monopoly is changing everything again and your old files won't be compatible? Does that sound far-fetched? Billions of dollars were invested in those old dedicated word processors that nobody can use any more. I'm sure some of you have been bitten by Office's Access and Publisher programs, in whose newer versions older data won't work. How many times have you come across a graphic file that won't open in your software, even though it appears to be a common type? The genealogists among you will recognize what I went through when a new version of the popular Family Tree Maker software wouldn't read data stored by an older version. We've all experienced these expensive annoyances. Now imagine that this sort of thing goes big-time. The big monopoly has been working for several years on a "revolutionary" new computer file system that will most likely be compatible only with itself. They don't have it yet, but if and when it becomes part of a new version of Windows, your old data may be useless.

Or suppose you could only get Windows and its software by subscription: if you don't pay the periodic fee, you won't just stop getting "upgrades"; your computer will be turned off by remote control. How likely is that? Every day, more and more software programs are being sold by subscription only. Executives at that big software monopoly have said publicly that they find the subscription model attractive. Windows XP already has the remote "off" switch built into it.

Most software companies profit by making their products obsolete to make people buy new versions every few years. After all, software doesn't wear out. If you weren't forced into it, would you buy a new word processor, spreadsheet, or computer every few years simply so you can keep on doing what you've always done? Linux and most Linux-based software is not only "free" (at least sometimes) it's also "open source". Nobody owns it, and nobody can ever charge a subscription for it. The file formats are freely available for use by anyone at no cost. They are highly unlikely to become obsolete because that would only cost money, not make money.

The proprietary software/hardware "upgrade" merry-go-round is spinning faster and faster. STIC can't afford the spiraling costs, and we're going to get off the carousel. What does that mean?

In the long term, it means that we'll convert as many of our systems as possible to Linux, and use as much open-source Linux-based software as possible. As I mentioned, the files will continue to remain compatible with popular Windows file formats.

In the short term, we will buy as few Windows operating systems and software "upgrades" as possible. The software we already have does everything we need it to do. We've researched the newer versions and determined that they don't provide enough added value to justify the cost. We consider fancy new animated graphics, "themes", "team access" and other such "features" frivolous and their purchase, irresponsible. State agencies and other funding sources must understand that as the big software monopoly goes on its merry way of periodically releasing new versions and obsoleting old ones, we will not be keeping up.

The responsible course for New York State and the federal government would be to follow the leads of the State of Massachusetts and several European and Asian national and municipal governments, and start converting to open-source formats. If they don't do this, then they must either communicate with us using Windows file formats that work today, or they must provide funds for "upgrades"-which we will purchase if, and only if, we can do so without endangering our ability to maintain our independence from software monopolies.

Electronic data is far too valuable to risk being rendered useless by corporate greed. As taxpayers we have a right to expect that our money will not be continuously wasted on new hardware and software that does little more than it did 20 years ago. The not-for-profit world can only benefit from learning about free and open-source software and adopting it. We hope you'll join us.

March 2006


AccessAbility is published seasonally (Spring, Summer, Fall, Winter) by Southern Tier Independence Center. Letters, information, descriptions of disability experiences and ads are always welcome. Deadlines are February 15, May 15, August 15 and November 15.
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Children's Mental Health Task Force Sets Priorities

by Maria Dibble

The final report of the Children's Mental Health Task Force was issued in November 2005. The 90+ page report outlined all of the study's findings, as well as including survey instruments used, who was surveyed, etc.

The response rate to the survey was outstanding, with only one provider not responding and with a 100% return rate from schools and service coordinators.

Conservative estimates put the number of children with co-occurring mental health and developmental disabilities (MH/DD) in Broome County who were either unable to be served or had gaps in services at over 300 individuals.

At a February meeting of a steering committee comprised of decision makers from key organizations involved in the Task Force, all of the recommendations from the report were discussed and ranked. No one wanted to choose only two or three main priorities, so instead participants ranked issues in order of our intent to address them. Priority 1 will be our first focus, but once that is being implemented we will form subcommittees to begin working on the other concerns.

Below is a list of the ranked priorities that resulted from our meeting. A copy of the Task Force report produced by the Center for Government Research is available upon request.

Priority 1

Improve communications to service providers and parents concerning what services are available for children with co-occurring MH/DD conditions, and the criteria for determining who is eligible.

Explore and develop expanded linkages between MH and MRDD service providers and school special education programs to improve information sharing and the appropriate, efficient and cost-effective provision of services.

Expand cross-training of staff in the MH and MRDD systems, and develop staff with cross-specialty skills to assess needs and serve children/families with co-occurring conditions.

Priority 2

Establish task force(s) to address one or more of the following perceived needs and service gaps for children with co-occurring MH/DD conditions:

(a) Child/adolescent psychiatric and psychological evaluations and testing

(b) Counseling services for children and parents

(c) Emergency and ongoing respite care for children and families

(d) Crisis intervention (such as MRDD expert at CPEP)

(e) Medication management

Develop cross-agency, cross-systems recruiting approaches, funding packages and potential shared-staff options to share costs and increase the odds of being able to recruit needed specialists to Broome County.

Priority 3

Establish a consistent assessment process using licensed trained professionals to conduct comprehensive diagnoses/needs assessments of those youth identified with possible co-occurring MH/DD conditions.

Expand capacity in the County for conducting psychological assessments of youth with suspected co-occurring MH/DD conditions as potential alternatives to some psychiatric assessments-to help determine diagnoses, strengths/weaknesses, treatment goals, and service eligibility.

Priority 4

Access services for children with co-occurring conditions through a single point of entry (SPOA), using either (a) revision of existing SPOA, (b) creation of new review and service access process, and/or (c) building on existing Coordinated Children's Service Initiative (CCSI) processes.

Ensure MRDD representatives become active participants in the SPOA and/or CCSI single point of entry processes to address cross-systems perspectives and service-eligibility issues.

Priority 5

Disseminate report statewide and hold follow-up meetings with NYS officials (e.g., State and regional officials in OMH and OMRDD, NYS Conference of Local Mental Hygiene Directors).

Priority 6

Have provider agencies identify by name all children and adolescents with suspected co-occurring Mental Health/Developmental Disability conditions and unmet service needs.

Establish a database and management system to track characteristics, diagnoses, needs and services of children with co-occurring conditions, and to monitor progress and outcomes across systems over time.

Priority 7

Develop a pilot project to address service needs of children with co-occurring MH/DD conditions (and their parents), and seek NYS cross-systems funding to help underwrite the pilot project costs.

Courts Watch

Victory in Goodman v Georgia

As we reported last fall, Tony Goodman was a criminal with a disability who was kept in a prison cell with only 3 ft. by 12 ft. of useable floor space. This meant he couldn't turn his wheelchair around and get in position to transfer to the toilet. The prison's shower room was also inaccessible. He needed the guards' help to use the toilet and the shower, but they often refused. He was at times left sitting in his own wastes for 23 out of 24 hours, and he injured himself several times while trying to transfer on his own. His complaints to the warden were ignored, so he sued the prison administration under Title II of the ADA, which outlaws discrimination on the basis of disability in the provision of programs and services by state and local governments, and under the 8th. Amendment of the Constitution, which forbids cruel and unusual punishment.

The federal District Court ruled against him, calling his complaints "vague" and noting that he'd already been moved to an accessible prison, and that the Supreme Court's Garrett decision had found that people with disabilities can't sue states for money damages under Title II. The 11th. Circuit Court of Appeals agreed on the money damages but said Goodman had a good enough 8th. Amendment case to warrant reconsideration. Goodman wanted money damages, so he appealed to the Supremes. The Bush Administration Justice Department filed on his behalf, and the Supreme Court opinion therefore calls this case "United States v Georgia".

In an opinion by Justice Antonin Scalia issued in January, the Supremes ruled unanimously in favor of Goodman. However, a concurring opinion written by Justice Stevens and joined by Justice Ginsburg offered a broader view of the issues.

Scalia acknowledged disagreements on the Court about the circumstances under which the ADA's use of the 14th. Amendment to abrogate states' 11th. Amendment "sovereign" immunity against money damages may be appropriate. But, he said, "no one doubts" that states can be forced to pay money damages for "actual violations" of the 14th. Amendment itself. He stated that the 14th. Amendment "incorporates" the 8th. Amendment's cruel and unusual punishment prohibitions. He said this means that this case is different from other ADA cases in which the Court found no justification for abrogating sovereign immunity, and included the late Justice Rehnquist's dissent in Tennessee v Lane, which argued there was no actual violation of constitutional rights in that case involving access to court facilities.

Scalia had also opposed the Tennessee v Lane decision, though for different reasons. His citation of Rehnquist's dissent, and his bizarre effort to get at the 8th. Amendment through the 14th., seemed designed to avoid the implications of that decision. This was not acceptable to Stevens and Ginsburg. They pointed out that the majority, governing, opinion in that case "mirrored" the issues raised by Goodman-namely, that any violation of any Constitutional right of people with disabilities through conduct by state governments that is prohibited by the ADA trumps sovereign immunity and permits money damages.

It is notable that this was new Chief Justice Roberts' first ADA case, and that he sided with Goodman in the decision.

Medicare Part D for "Disaster"

by Maria Dibble

The roll-out of the new Medicare Part D prescription drug program has been disastrous. As we predicted last issue, the automatic Part D enrollments of hundreds of thousands of "dual-eligibles"--people who get both Medicare and Medicaid--either never happened or never got into the federal Center for Medicare and Medicaid Services (CMS) database. Hundreds of thousands more were enrolled but didn't get the CMS notification letter or a benefit card from their plan provider. Vast numbers of low-income people with disabilities arrived at pharmacies to be told they didn't have insurance, their prescriptions weren't covered or the pharmacy wasn't in the plan's network. As druggists tried to help them, the computer and phone systems for Part D enrollment and billing operated by the feds, and by insurance companies, grew overloaded and failed. Across the US, consumers, advocates, pharmacists and doctors experienced unresponsive websites and telephone busy signals or extremely long hold times. Hundreds of thousands of people either paid large sums out of pocket or left drugstores empty-handed. People with mental illnesses were among the hardest-hit by the crisis. Many relapsed and had to be hospitalized.

In early January CMS said that about 21 million people had enrolled in Part D plans, and that 1 million prescriptions had been filled. CMS claimed this meant the new program was gaining rapid acceptance. In fact, 6.4 million of those people were "dual eligibles" whose previous Medicaid drug coverage was stripped away by the new law; they were randomly forced into plans that may or may not have covered their prescriptions. Millions of others enrolled because private insurers stopped drug coverage for Part D-eligible people. Although the law calls Part D "voluntary", the alternative to Part D for "dual eligibles" is no drug coverage (and in NY, no Medicaid) at all, and for everyone else, there's a "penalty" fee that increases the longer they wait to enroll. The claim that lots of people are voluntarily enrolling in Part D because they like the program is unsupportable.

There was widespread media coverage of this debacle, but few reports mentioned the not-entirely- voluntary aspects of the program.

Many reports presented this as a senior citizen issue and didn't mention "dual-eligibles", most of whom aren't elderly, at all. And nobody noticed the huge gap between 21 million plan members and just 1 million successfully-filled prescriptions.

The early computer and phone hotline access glitches were resolved fairly quickly, but the larger problem of inaccurate and incomplete information in the system continued to result in denials of coverage. And as time passed, more problems surfaced, related to the extremely limited nature of the Part D "benefit". These ongoing issues highlighted basic flaws in the program's design.

Documents provided by CMS, DOH, and some advocates claimed that Part D plans must cover an emergency "first fill" of prescriptions that aren't in their formularies as part of "transition plans" for new enrollees. Most of the health problems experienced by people who couldn't get their drugs occurred because pharmacies couldn't get confirmation that Part D providers would pay for these "first fills" while the computer and eligibility snafus were being worked out.

In fact, as we reported in December, there is no specific rule in Medicare law or regulation that requires first fills from any Part D plan. CMS "encouraged" plans to do it but did not require it, because the law does not require it. Faced with the reality of huge masses of people being turned away or forced to pay cash up front, on January 6 CMS sent a special letter to Part D providers that more strongly "encouraged" first fills. This letter suggested the problems were due to poorly trained customer service reps and stated that emergency fills in some situations were the "intent" of CMS "policy". CMS doesn't have the legal authority to order plan providers to do this, and the letter itself doesn't actually do so, but the stuff has hit the public fan now, and most providers are scrambling to ensure that emergency fills are done. If the feds don't come up with additional money to pay them for it, we'll probably hear more about this.

CMS, the White House, and some Congress members have portrayed this as just the growing pains of a new system. In fact, the law passed by your elected representatives (of both parties) and signed by your President was deliberately written to exclude any "must fill" mandates. They were well aware of the risks at the time. They chose to ignore them. CMS tried to prevent disaster with its "encouragements" but did not have the authority to do more. This debacle was not a "mix-up". It was not "growing pains." It was not a "training problem." It was written into the law by people who care more for drug company campaign contributions than for the health of our citizens. Only after it publicly blew up in their faces did they try to confuse the issue.

But even CMS's extra-legal January "instruction" to plan providers to cover first fills wasn't enough. In desperation, most states, including NY, told pharmacies to go ahead and give drugs to these folks and the state would guarantee payment and collect from the feds later. CMS officials pointed out that the law made it illegal for federal Medicare or Medicaid funds to be used for these expenses. They claimed that plan providers were responsible for these payments and no federal reimbursements would be made. However, under pressure from governors and members of Congress from both parties, CMS announced that it would cover these emergency Medicaid expenses through March 8. This was a quiet acknowledgement that plan providers can't legally be forced to pay for first fills that the law doesn't require them to provide. It's true that no federal law authorizes this Medicaid spending, and it looks like more off-the-books federal "budgeting".

Meanwhile, a brief drama played out in NY. As we reported last time, the state Department of Health (DOH) issued written guidance in November stating that NYS Medicaid "will" cover over-the-counter meds and supplies that it had covered in the past and "will" cover medically-necessary drugs that Medicare disallows, such as benzodiazepines and barbiturates, for "dual eligibles" (actually, the federal subsidy for Part D can't be used for these drugs but some Part D plans with higher premiums do cover them). This document also said Medicaid "may" cover prescriptions for "dual eligibles" that aren't on their plans' formularies. In December DOH issued details on this: NYS Medicaid will pay for medically- necessary drugs that aren't on a Part D plan formulary for "dual eligibles" if the physician couldn't substitute a covered drug, and the plan provider has rejected an "exception" request. DOH also clarified that this doesn't apply to drugs that are on a plan's formulary but subject to prior approval, limited dosages, or "step therapy". While these details weren't available for our December issue, they are about what we expected when we read that DOH "may" cover non-formulary drugs. Some sources say that DOH "promised" more than this and then reneged but we haven't been able to verify that claim.

In any case, the Part D crisis offered an opportunity to NY advocates who wanted a better Medicaid "wrap-around". Governor Pataki had already issued an emergency proclamation that Medicaid would temporarily cover any drugs that "dual eligibles" couldn't get the new system to provide. The state Legislature got into the act and passed a bill to provide the same coverage, with no requirement to go through the Part D appeals procedure, until the DOH Commissioner declares the problems to be fixed. Pataki vetoed it, arguing that after his emergency proclamation and CMS's pledge for coverage through March 8, nothing more was needed. Both houses of the Legislature immediately overrode his veto. It was unclear at press time in March when this more generous "temporary wrap-around" will expire. Pataki's FY 2006-07 budget plan would end the more limited DOH "wrap-around" (see Pataki Proposes; STIC disposes), but he'll need the Legislature's approval for that.

Other unpleasant events came to pass this winter that knowledgeable people had predicted when the Part D law was passed but by which politicians coyly claimed to be surprised.

Several private insurance plans announced they would end all medical coverage--not just for drugs--for retirees if they join Part D. Two big ones in New York State were the 1199/SEIU Benefit & Pension Fund--a union-based plan that covers a lot of institutional and health service workers--and the City of Buffalo retiree policy. On the national level, 9% of the nation's largest companies planned to discontinue drug coverage for Part D-eligible retirees in the next year, but only half of these companies say they expect to be providing such coverage by 2010.

Then there were announcements by four drug companies--GlaxoSmithKline, AstraZeneca, Eli Lilly, and Tap Pharmaceutical--that they were ending their programs to provide free or low-cost drugs to low-income people. They claimed that the new Medicare law, which forbids drug companies to offer inducements to people in Part D plans, makes these programs illegal. Other companies, including Takeda Pharmaceutical and Merck, don't see it this way; they're just excluding people enrolled in Part D. Federal officials confirmed that the programs are legal for people who aren't actually in Part D plans. The companies that canceled the programs may have planned to do so anyway and are using the new Medicare law as a convenient cover.

Very recently, it emerged that NY Medicaid no longer covers "in-home infusions"--using an IV line to administer medication over time in the home. While this is a Medicaid-eligible medical procedure, it's being disallowed because it involves prescription medications. The typical Part D plan, though, doesn't cover the full cost of infusions, just the medications. Providers of this service are refusing to do it for what Part D will pay, and people are facing the very real possibility of a highly- expensive institutional placement simply to receive this service.

In Washington, Congress members of both parties said they'd introduce bills to force the feds to reimburse states for emergency outlays and/or to delay imposition of penalties on Medicare-eligible people who choose not to enroll in Part D. At press time it was unknown if anything more would come of this than came of recent posturing by so-called "moderates" over big federal Medicaid cuts. People with disabilities have reason to be suspicious of politicians who claim to be "moderate"; despite their public hand-wringing in recent years concerning huge tax cuts for wealthy people, the weakness of the Medicare drug program, and the Medicaid cuts, many of these people have voted with the right- wing extremists on these items.

"Moderates" Mangle Medicaid

The federal Budget Reconciliation Act of 2005 was not passed and signed into law until February 2006, due to last-minute Senate action in December that forced the House to re-vote on the bill after the holiday recess. Once again, despite pious public statements about protecting the disadvantaged, nearly all of the so-called Republican "moderates" (including, of interest to AccessAbility readers, PA Senator Arlen Specter and Central NY Congressman Sherwood Boehlert) voted for this measure. This law contains major changes to the federal Medicaid program that may harm people with disabilities.

Here's a summary of the most important changes. Most are changes to state options. That is, states may or may not decide to modify their Medicaid programs as a result. With a few exceptions, states could keep their Medicaid programs as they are now, though that's unlikely. As always, we've tried to present an accurate analysis of the facts. We've read the actual law and this article does not rely on summaries prepared by advocates.

Changes to Drug Purchasing Practices

The new law changes the rules governing how Medicaid programs pay for prescription drugs. Frankly, the language is so technical that we couldn't assess what impact this will have. We know the original Senate bill would have saved money by bringing drug payments closer to actual market prices. We also know that the original House bill didn't contain any such provisions because drug company lobbyists got them taken out. The end result shouldn't be harmful to people with disabilities, but it may or may not be harmful to the budget.

Asset Transfers and Income Eligibility

The new law increases the "look-back period" for asset transfers to 5 years. This means that if you give away valuable assets (instead of selling them for fair market value) up to 5 years before you apply for Medicaid, those assets may be counted when determining your financial eligibility. The goal is to keep wealthy people from pretending to give away their wealth (usually with "gifts" to family members that will be returned under the table) in order to qualify for Medicaid long-term care services. We have no problem with this.

Of course, even wealthy people can't predict a devastating illness or injury that could drain their finances quickly and leave them in need of long-term care that they can no longer afford. This is why the law requires states to waive this rule if delaying Medicaid eligibility would threaten a person's health or shelter. This part of the law refers to people receiving "institutional levels of care", so it's not clear if it applies to people seeking community-based services.

Also, the new law says that if you own a house worth $500,000 or more you can't be eligible for Medicaid unless your spouse or your disabled child lives there. States can raise this threshold to $750,000. You can use a home-equity loan or "reverse mortgage" to bring your equity below the threshold amount, and states must offer a hardship waiver for this provision as well.

Early and Periodic Screening and Diagnostic Treatment Benefit (EPSDT)

This service is for Medicaid-eligible children under 21. It covers screening for hearing, vision, dental, and mental health conditions and requires states to provide treatment for conditions discovered by such screening even if the treatment is not ordinarily available to Medicaid recipients under the State Plan. This was a mandatory State Plan service under the old law.

The new law makes this service optional for states. In states that drop this option, we may see many low-income children undiagnosed and untreated until later in life, when the costs of treatment and support services for them will be substantially higher.

Cost Sharing

"Cost sharing" means premiums and co-payments. Presently states can charge co-pays for some Medicaid services, and the Medicaid Buy-In allows sliding-scale premiums for Medicaid coverage for people with higher income levels. The new law brings striking changes in this area.

First, any applicable cost sharing measures don't have to include hardship provisions. States can choose to cut off Medicaid services to anyone who can't afford the co-pays or premiums. The purpose of Medicaid is to provide medical services to people who can't afford them. This reveals a new coldhearted indifference to the suffering of the poor among our federal representatives.

This is made much worse by a so-called "drafting error" that limits how much cost sharing states can force on Medicaid recipients with incomes above 100% of the poverty line, but doesn't apply those limits to the poorest recipients. So-called "moderates" in both houses of Congress claimed that any such errors resulting from the rushed legislative process over the winter would be fixed with "technical amendments" later. The recent behavior of these so-called "moderates" shows that they can't be taken at their word. Any such "fix" would cancel some of the cost savings calculated for this law. We suspect right-wingers will call that an attempt to "raise spending" and do their best to defeat it, and that the "moderates" won't stand up to them in the final vote.

There are limits on the kinds of cost sharing that can be imposed, regardless of income. Several Medicaid recipients are exempt from premiums, including some children in foster care, pregnant women, terminally-ill people in hospices, anybody in an institution that confiscates most of the person's income as partial payment, and women receiving special medical assistance. The same groups are exempt from co-pays, as are kids receiving preventive services, and people receiving emergency or family planning services.

Anyone else can be subjected to cost sharing as follows: If your family income is between 100% and 150% of the poverty line, you're exempt from all premiums. Co-pays can't be more than 10% of the cost of each item or service, and the total of your entire family's co-pays can't be more than 5% of your income, calculated quarterly. If your family income is above 150% of the poverty line, the total cost of combined premiums and co-pays for your family can't exceed 5% of your income. No individual co-pay may be more than 20% of the item or service cost.

Nothing in the law prevents providers from waiving co-pays or premiums for hardship, and nothing prevents states from being more generous than the above limits.

It's been reported that co-pays under this system could be extreme, such as $160 per day for hospital stays and $120 per doctor visit. The cost-sharing limits would probably keep this from being a real problem for people whose incomes are above the poverty line--but that "drafting error" definitely would allow this to happen to many of the poorest people in our nation.

Benchmark Services

The new law lets states radically change the amounts and types of basic medical services (not including prescription drugs) available to some people under their State Plans by making them the same as "benchmark" plans. This doesn't always imply reduced services. Some of the defined benchmarks may provide good coverage in some states. On the other hand, states are much more likely to use this to cut costs than to increase them. These "benchmark" plans are:

  • The standard Blue Cross/Blue Shield preferred provider option service benefit plan, which is actually defined by federal law.
  • The health insurance that state employees receive.
  • The most popular private HMO plan (the one that serves the largest number of non-Medicaid enrollees in the state).
  • A benchmark plan defined by the Secretary of Health and Human Services (HHS) (if s/he decides to offer one).
  • "Benchmark Equivalent Coverage"--A plan that includes inpatient and outpatient hospital services, physicians' surgical and medical services, lab and x-ray services, well-baby and well- child care, including age-appropriate immunizations, and "other appropriate preventive services, as designated" by the HHS Secretary.

If a state adopts the typical cherry-picking HMO plan or the minimal "benchmark equivalent", this could be devastating, but probably only for a relatively small group of nondisabled people. The following people cannot be forced into a "benchmark" plan: some pregnant women; people who qualify for Medicaid State Plan services due to disability (this would be anyone on SSI, among others); "dual eligibles" (people eligible for both Medicaid and Medicare); terminally ill hospice patients; people living in institutions that confiscate most of their income; people who are "medically frail" or who have "special needs"; people who qualify for long-term care; kids in foster care; some parents receiving TANF assistance; women in the special breast or cervical cancer programs; and some "limited services beneficiaries".

State Plan HCBS Services

Up to now, most "Home and Community Based Services" (HCBS) have been available only under more or less limited Medicaid waivers--like NY's OMRDD and DOH TBI waivers. This has been changed, but only in a paperwork sense. States no longer have to get a waiver to offer such services, but they can still waive many standard Medicaid rules. In some cases the services would only be available to people with incomes up to 150% of the poverty line. (We assume this allows for spend-downs but not for the Medicaid Buy-In.) The state can cap the number of some, but not all, types of people to be served by such programs, and can put the rest on waiting lists.

There are some good aspects to this. People would no longer need to be eligible for nursing home or ICF "care" to receive such services. In fact, the state's requirements for nursing home/ICF eligibility would have to be tighter than for HCBS services. Needs assessments would have to be "independent". And the state has the option of offering self-directed services.

Advocates have said that this is a terrible program for two reasons. First, it would give states that already offer the optional Medicaid Personal Care Services a cheaper option to provide the same types of services but to potentially far fewer people. Second, it's a bad precedent to remove the statewideness and comparability of service requirements from any State Plan service.

We agree that there's danger here. However, there are some details to consider. The law appears to say that caps and stricter eligibility limits cannot be applied to people who are already in institutions and want to use these services to move into the community. Also, to the extent that this causes states to slow down their process of deinstitutionalizing people, they will still run into the Supreme Court's Olmstead decision, which found unnecessary segregation of people with disabilities to be illegal under the ADA, not the Medicaid law, and which still applies. Advocates should remind their state governments of this. This option could be handled in such a way as to greatly expand integrated services and shrink institutions--but it could also be badly misused.

Bright Spots

The "Money Follows the Person" demonstration project, proposed by President Bush as part of his "New Freedom Initiative" some three years ago, made it into the final bill, apparently intact. It provides $1.7 billion for grants that states can request to assist people to move from institutions into the community. Under these projects, the feds will pay 100% of Medicaid costs for HCBS-style services for the first year for people making these transitions. The Family Opportunity Act was another longstanding initiative that was included with this bill. This lets families with moderate incomes but no access to health insurance buy into Medicaid and pay premiums, much like the Medicaid Buy-In for working people with disabilities. And finally, there's a provision to let states enact "Cash & Counseling" programs for long-term care.

New York Association on Independent Living
2006 Disability Priority Agenda Budget Priorities

1. Independent Living Center Funding Priorities
Increase funding for Independent Living Centers (ILCs) by an additional $5 million this year.

ILCs have not had an increase in state funding in over six years. ILCs need a $5 million increase now to continue to provide people of all ages and disabilities with services that allow them to:

  • Develop skills to live independently
  • Earn degrees, find jobs, and become self-sufficient
  • Reduce their reliance on state and federal benefit programs
  • Stay out of institutions and participate in community life

Demand for ILC services has grown dramatically during the long period of level funding. In addition, ILCs assist people of all ages with disabilities to transition from or avoid unwanted placement in nursing homes or other institutions. In the period 2001-2005, ILCs transitioned or diverted 4,152 people at a savings to the state of nearly $350 million. ILCs are part of the solution as the Legislature weighs rightsizing the Medicaid-funded long term care system.

While NYAIL appreciates and supports the State Education Department's proposal to increase ILC funding by $8 million over three years, ILCs need an immediate infusion of dollars to address existing shortfalls created by years of level funding, as well as growing demand for services.

Increase funding to ILCs by $3 million for transition projects serving students with disabilities leaving school for higher education, vocational training and work.

Students with disabilities continue to face significant challenges, especially as compared with their non-disabled peers, as they try to finish their education and plan careers. ILCs pioneered partnerships with schools to help these students stay in school and provide them with vital links to higher education, vocational training and work, leading to more successful outcomes in post-high school life. Increased funding and incentives for schools to participate will help young people with disabilities live independent and self-sufficient lives in their communities.
2. Health-Related Priorities
Oppose proposals affecting eligibility, benefits/coverage, and/or access to services for Medicaid beneficiaries. Eliminate the systemic bias that leads to unwanted placement in nursing homes and other institutions.

Medicaid is essential to making healthy community living a reality for people with disabilities. Under the 1999 US Supreme Court Olmstead decision, people with disabilities must be able to access supports to live freely in the community and avoid unwanted placement in nursing homes and other institutions, which are often the costliest Medicaid services. Medicaid service cuts or eligibility reductions put people with disabilities at increased risk of unwanted placement in a nursing home and/or poor medical outcomes. As the Legislature considers Medicaid and long term care reforms, it must make community integration through the provision of vital and accessible services to people with disabilities of all ages its top priority.

Expand coverage under New York's Elderly Pharmaceutical Insurance Coverage (EPIC) program to people with disabilities under age 65 (A. 3074/S. 1357).

Many people with disabilities live on marginal incomes that do not qualify them for Medicaid. Some are faced with the choice of either buying medication, or paying the rent or buying food. Those who worked long enough to qualify for Social Security Disability Insurance (SSDI) are eligible for the new Medicare Part D prescription drug program, but the significant cost sharing associated with this program will still make it unaffordable for many. EPIC expansion will help people with disabilities stay healthy and avoid costly and unwanted institutionalization.

Provide rental/housing subsidies to people leaving institutions under the new Nursing Home Transition and Diversion Medicaid waiver.

New York is about to implement a new Nursing Home Transition and Diversion Medicaid waiver, which will help 5000 seniors and people with disabilities live in their communities and avoid or end unwanted nursing home placement. To make this a reality, affordable, accessible housing is critical. A housing subsidy is currently part of the Traumatic Brain Injury (TBI) waiver program. Part of the savings to the state from avoiding high-cost nursing home placements should be used to offset the cost of making housing subsidies available to transitioned and diverted individuals.
3. Housing Priorities
Create a housing trust fund for people with disabilities.

According to the study, "Priced Out in 2004," New Yorkers with disabilities with SSI incomes would have to spend 118% of their income to afford a modest efficiency apartment. A housing trust fund would provide people with disabilities with very low to moderate incomes with grants, loans and other housing supports and services, including home modifications. A dedicated funding stream is needed; options could include a surcharge on fines for DWI, DUI, non-use of seatbelts and/or other moving violations. We are pleased to see the Governor's proposal to increase Access to Home program funding by $5 million, but more is needed now to fully address the housing crisis facing people with disabilities.
4. Employment Priorities
Increase funding for employment services by $2 million for Integrated Employment (Case Services) and $2 million for Extended Supported Employment services, as the NYS Education Department has proposed.

People with disabilities seek to live independent, productive lives in their communities and participate fully in society. Employment and career development services are essential to help people with disabilities find and keep jobs, achieve independence, and live the "American Dream."
5. Public Policy Priorities
Waive the state's sovereign immunity to claims under the ADA and Section 504 of the Rehabilitation Act of 1973 (A.2159).

Incorporate Titles II and III of the Americans with Disabilities Act (ADA) into NYS Human Rights Law (A.7294/S.5074, A.6328/S.3921).

Incorporate the housing provisions of Section 504 into NYS law (A.7867/S.4933).

The Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act of 1973 provide comprehensive federal protection for the civil rights of people with disabilities. Efforts to weaken the ADA in recent decisions across the country, and inconsistencies with provisions of NYS Human Rights law, leave people with disabilities confused and uncertain about their civil rights protections in New York. Also, housing developers often fail to comply with Section 504's requirement to set aside accessible units for people with disabilities when federal funds are used. New York State must do its part to ensure these critical protections are incorporated into state law and that the state's immunity to suit under the ADA and Section 504 is waived.

Require all polling places to meet current state and federal standards for accessibility to people with disabilities, including the Americans with Disabilities Act and the Help America Vote Act of 2002 (HAVA), and eliminate language in NY Election Law allowing waiver of accessibility requirements.

People with disabilities must have the opportunity to exercise their right to vote privately and independently, along with their families, friends and neighbors. State Election Law must be amended to eliminate all waivers of polling place accessibility requirements and all polling places must be made accessible now.

Ban the use of solitary confinement in special housing units (SHUs) of people with psychiatric disabilities in state correctional facilities (A.3926/S.2207).

Psychiatric disabilities may interfere with an inmate's ability to conform to prison rules. Inmates who violate rules are frequently segregated for months or even years in disciplinary lockdown, sometimes known as Special Housing Units (SHU). Confined for 23 hours a day, these prisoners face severe social isolation, extreme boredom and idleness and increased risk of suicide. Placing people with significant psychiatric disabilities in solitary confinement is inhumane and wrong and should be banned.

Require transportation service providers such as taxis, limousines and hotel shuttles to buy accessible vehicles or otherwise ensure they have the capacity to serve people with disabilities.

People with disabilities need to get around like everyone else, to go to jobs or medical appointments, or have dinner with friends. Transportation service providers must be required to serve people with disabilities with services that are equivalent to those offered to everyone else.

Pass Timothy's Law (A.6498), providing for parity in coverage for mental health and substance abuse services by health insurance plans.

Limits on health insurance benefits for mental health treatment can have a dramatic impact on adults and children with mental illness, including school failure, substance abuse, family disruption and criminal justice involvement. Families seeking treatment for children may have to choose between paying for only the services they can afford or giving up custody of a child to access publicly funded services. Insurers should be required to cover necessary, sometimes life saving, mental health and substance abuse services on a par with coverage for physical health services.

NYS Board of Elections to People with Disabilities:
Phone It In!

The inability and unwillingness of the Democratic and Republican parties to work together to bring New York State into compliance with the federal Help America Vote Act (HAVA) was approaching a crisis point in late February.

The state Board of Elections (BOE) expended considerable time and resources to seek and digest extensive input from people with a variety of disabilities across the state on how best to comply with HAVA's mandate to provide accessible voting machines. The BOE learned that to be accessible, a machine must be useable by people who are blind, deaf, who have limited fine-motor abilities, and/or whose mobility limitations affect their ability to enter a voting booth or reach the controls on the machine. The BOE was told that the problem would become much simpler if the state would give up its arcane full-faced ballot and use a ballot layout similar to those used by the other 49 states in the union. There are no existing voting machine designs that use the full-faced ballot that are fully accessible to people with all types of disabilities, but some of them could be, with relatively simple modifications. At least one of these can produce the optical-scannable printed paper ballot that people concerned about "paper trails" prefer, and would be acceptable if the paper-feed mechanisms are modified to be useable by people with limited fine motor abilities. And the BOE was told by advocates, and by the US Department of Justice, that there is no wiggle-room on the requirement to provide accessible voting systems.

The BOE responded by saying that all of this expert input amounts to nothing more than the "personal preferences" of individuals. However, recognizing that something is supposed to be in place for the 2006 elections, the BOE proposed to spend 5 million taxpayer dollars this fall to rent, for one time only, a telephone voting system for people with disabilities.

This system consists simply of a telephone with a large-print dial, placed on a table at the polling place. Users must listen to a recorded menu of options and use the number keys to spell the names of candidates they want to vote for. You might think this means using the letters on the keys, but that's not how it works; phone keypads don't have all of the letters of the alphabet. Instead, the letters are assigned numbers from 1 to 26 and you have to type in the number for each letter. If you wanted to vote for a candidate named John Quincy, for example, you'd have to type 10-15-8-14 16-21-9-14-3-25. Very few people know, off the tops of their heads, that "u" is the 21st. letter of the alphabet. It could take a person up to an hour to work their way through a typical NYS ballot using this system. And this system only provides access to people with visual disabilities; it doesn't work for people who can't dial a phone.

This is unacceptable to the disability community, as have been the dawdling and petty squabbling of party leaders in the State Legislature over this issue for nearly 4 years, as are the incompetence and arrogance of their minions on the BOE. It is also unacceptable to the federal Department of Justice, which at press time had filed a lawsuit against New York State.

Pataki Proposes; STIC Disposes

With a budget surplus in the $2 - $3 billion range and elections this fall, Governor Pataki this year has aimed destructive cuts at just a few budget areas, and has proposed some good things.

Medicaid Proposals

Perhaps most dangerous is a new plan to force SSI recipients--usually people with congenital disabilities and very low incomes--into managed care. National research shows that ordinary managed care programs don't serve people with disabilities well. This mandatory enrollment is already on the books, but it has to respect NY's Medicaid Managed Care Bill of Rights, which requires a choice of least two managed care plans that meet the medical and access needs of people with disabilities. These rules have prevented most forced enrollments in upstate NY, as Pataki now realizes, because they make plans cost more than he wants to pay. So now he wants to let rural counties get away with only one plan, and he wants to end requirements that facilities be accessible and that "special needs plans" be available to people with mental illness, and make other changes to gut the Managed Care Bill of Rights. Also, HMOs don't offer long-term care or Medicaid Waiver services, and some people are asking if OMRDD HCBS Waiver participants, almost all of whom get SSI, would still have those services once forced into managed care.

The Governor wants to remove the "doctor has the last word" provision from the Preferred Drug program. This would mean the Department of Health (DOH), not your doctor, would make the final decision on appeals for coverage for particular medications. Inevitably, DOH will err on the side of saving money rather than promoting health, which means that many people on Medicaid will get sicker and need more costly forms of care-a net loss for the state.

Pataki has again proposed Medicaid income eligibility restrictions. Among them are extending the "look-back period" for asset transfers to 5 years; including more items, such as annuities, in the list of assets to be considered when determining eligibility; and eliminating "spousal refusal".

The look-back period issue is moot; the recent federal Budget Reconciliation Act contains this extension and it's not optional. However, federal law requires states to waive this in hardship cases. The feds also have a broader list of assets than the state currently uses.

Spousal refusal is a way to exclude a spouse's income when determining eligibility for Medicaid community-based long-term care. NY has a similar "spousal impoverishment" rule for people seeking institutional placement. As we keep repeating, ending spousal refusal while keeping spousal impoverishment creates incentives for struggling families to put people in institutions, which are, as we keep saying, on average 5 times more costly than equivalent home and community-based services. This will actually cost the state more money, not less.

Pataki hasn't succeeded with proposals like these in the past, so he wants the Legislature to give DOH authority to make Medicaid program changes without Legislative approval. This would be bad enough if the only issue was SSI managed care. But the new federal Medicaid law lets states severely reduce the quality of Medicaid services for nondisabled people, so much more is at stake now than last year when the same proposal was rejected.

New this year, Pataki wants to end most of the state's Medicaid "wrap-around" for Medicare Part D on July 1. Currently this program will pay for prescriptions for "dual eligibles" that are not on a Part D plan formulary after the plan's provider has denied an "exception" request. Pataki would continue the wrap-around only for certain drugs used for mental illness, HIV/AIDS and organ transplants. The Legislature just overrode Pataki's veto of a more generous temporary "wrap-around" this winter, so they may be in no mood for this.

Advocates report that "dual eligibles" are having a very hard time paying federally-required co-pays for Part D drugs even when they are covered. They'd like the state to provide a Medicaid wrap-around for these co-pays. Since federal law clearly forbids using federal Medicaid dollars for this, the state would have to do it with 100% state funds. There may be some Legislative interest in this.

Family Health Plus

Pataki wants to apply a $25 co-pay to emergency room visits for people in this plan unless an "actual emergency" is involved, and he wants emergency rooms to be able to refuse to serve people who can't afford this. People with Family Health Plus should have family doctors for non-emergency care, so we don't see much reason for opposing this item. On the positive side, the state takes over 100% of this program's costs this year, easing the burden on counties.


The Governor wants to cut NY's Elderly Pharmaceutical Insurance Coverage (EPIC) program costs by requiring many low-income senior citizens to enroll in Part D in order to get EPIC wrap-around coverage. This may be better for them because they'd have no deductibles, no premiums, and very low co-pays under Part D, and as added incentive the state would waive the EPIC enrollment fee. However, rather than putting the resultant savings into the General Fund, the state should use them to expand EPIC coverage to low-income people with disabilities under the age of 65. Such an expansion was a non- starter last year but may do better this year.

Good News

Pataki wants to increase the Access to Home program's funding from $10 million to $15 million this year. This program pays for access improvements to the homes of people with disabilities to enable them to remain in the community, and should be used for people who aren't eligible for other similar programs. There has been a problem with OMRDD, which has its own funds for such things, sending people to Access to Home instead; this should be stopped. Pataki also wants to increase the Expanded In-Home Services for the Elderly Program (EISEP)'s funding again.

Pataki proposes to end the higher reimbursement rate for larger institutions (300 or more beds), removing an important aspect of institutional bias. He also wants to offer financial incentives to hospitals to release people with mental health or addiction issues to community-based programs.

And he's proposing 2.5% annual cost-of-living adjustments (COLAs) for three years for many disability- related programs. However, the COLA does not apply to OMRDD Day Habilitation or to direct-care workers in the DOH TBI Waiver. These are some of the state's lowest-paid disability workers, and these programs have big recruiting and turnover problems. Also, while Pataki hasn't tried to cut funding for Centers for Independent Living (like STIC) this year, he's not proposing an increase either, and these programs have not had a raise in six years.

The Governor's budget notes that there are incentives in state education funding procedures for schools to segregate students with disabilities. He's proposing to eliminate some of these, such as reducing the state aid ratio for private special education programs to the same level as that for special ed in public schools, and by eliminating state aid to BOCES programs that cost more than comparable programs delivered by ordinary school districts.

A Project HAVA Update

by Cheryl White

As we wrap up the first year of our project, we have completed the regional trainings and are well into our first round of visits to residential facilities. We are currently completing work on a Voter's Handbook that will be available shortly in electronic format on our website, www.ccfi.us. We have published the first issue of the HAVA Quarterly, and it has been very well received. If you haven't seen it yet, go to our website, www.ccfi.us and check it out.

We're now in the planning stage for next year's activities. We have decided not to schedule any regional training programs, but to respond to requests for training and information. If you would like Project Staff to provide your group with training, technical assistance, or information about:

  • The implementation of HAVA in NYS
  • Accessible Voting Machines
  • Accessible Polling Places
  • Accommodations for Voters with Disabilities
  • Disability Etiquette

or any other topic dealing with HAVA, voting, and voters with disabilities, please contact us at 1- 888-NYS-HAVA or nyshava@ccfi.us.

A lot has been happening on the HAVA front in New York State. Below are a few of the issues we've been keeping a close eye on:

In November 2005, the Brennan Center for Justice at New York University of Law issued a memorandum concerning full-face ballot law in New York State. According to the Brennan Center's research of the statute, the interpretation of the requirement that all offices be displayed at once on a single surface or display is not accurate. The requirement states "the contents of the 'ballot' must be presented so as to ensure that any given page or screen does not exceed the boundaries of the 'frame.'"

The Citizen's Advisory Committee has not yet had an official meeting. An "informal" meeting was held in December, but no business could be conducted pending the result of an "Article 78" proceeding brought by NYSILC. The Article 78 was brought because the Board failed to appoint a NYSILC representative as was mandated in the statute. On the eve of the hearing the Board acquiesced and appointed Dennis Boyd to the Committee to represent NYSILC. However, the Board then removed Cliff Perez from the Committee. This means there is still a vacancy on the Committee. The appointment needs to be (by statute) someone representing a disability rights organization. No word as yet from the Board about this appointment. To view a list of current Committee members go to www.elections.state.ny.us/hava/advisorycommittee.html.

And lastly, on January 10, 2006, the Department of Justice (DOJ) sent a letter to the NYS Board of Elections' Counsel and the NYS Attorney General informing them that the DOJ has authorized the filing of a lawsuit on half of the United States against NYS and the State BOE for failure to comply with the statewide voter registration requirements and the voting system standards of HAVA. The DOJ states they would prefer if NYS entered into a consent decree, but the DOJ is prepared to move forward with litigation "if the matter is not resolved expeditiously." To read the entire letter, go to our web site at www.cfi.us. Stay tuned for further updates.

With all the late breaking news and information regarding HAVA, it's hard to keep abreast of it all. Project HAVA is here to serve as a resource for New York State's 52 upstate counties. Please contact us by calling 1-888-NYS-HAVA or sending an email to:


Remember...we all HAVA vote!

Spitzer Sues Salerno

In January NYS Attorney General and Democratic gubernatorial candidate Eliot Spitzer announced he was suing Healthcare Associates and its president, Anthony Salerno, over mistreatment of patients at one of the company's nursing homes.

Healthcare Associates owns and operates the infamous Northeast Center for Special Care (NCSC) in Lake Katrine, NY, which has been the subject of several articles in AccessAbility. Salerno is a Pataki campaign contributor and the NCSC was established as part of a deal worked out between Governor Pataki and IBM. Healthcare Associates is the successor to the defunct criminal NewMedico Head Injury System. On orders from Pataki's administration, NY's Department of Health has repeatedly rescued the NCSC from efforts by Medicaid and Medicare inspectors to shut the facility down due to clear evidence of widespread and continuous neglect and abuse of inmates, and fraudulent billing.

The facility cited in the lawsuit is the Jennifer Matthew Nursing Home in Rochester, but Spitzer's office described a litany of malfeasance that is familiar to those following the NCSC story, including leaving patients lying in their own wastes, starvation and dehydration, bedsores and infections, falsified medical records, and staff who did no work or even did not show up. Several staff were captured on hidden cameras in the act of ignoring inmates, and 14 of them were arrested on criminal charges.

Disability rights advocates hoped that Spitzer's lawsuit, combined with Governor Pataki's departure from office in 2007, would finally put an end to the suffering at the NCSC and other Salerno facilities.


Brian's Story

by CDR Staff

Brian is 22 years old and has spina bifida. An articulate, outgoing young man, Brian was placed in the county nursing home at the young age of 14. During his time at Monroe Community Hospital (MCH), Brian was unable to complete his high school education, to prepare for work or going to college. He dreamed of starting a life of his own in the community. Brian remained at MCH for eight years, with his dreams and life on hold, until he started working with his local Independent Living Center.

After nearly eight years of being institutionalized, Brian learned about the Center for Disability Rights (CDR) in Rochester and their work to help people move back into the community from nursing homes and other institutions. He contacted CDR and asked for their assistance in finding his own apartment and setting up a variety of services to allow him to finally start living his life. Brian is now happily living in a one-bedroom apartment in a section of Rochester where many college students live. He is planning to develop his work skills and pursue his education. When you visit Brian in his apartment, you are immediately disarmed by his sense of humor. He also has a serious side and wants to help get other people out of nursing homes. He doesn't want anyone else to give up years of their lives to institutionalization.

Although he lost eight years of his young life, Brian feels lucky that he heard about Independent Living. And the state's taxpayers are lucky too! Brian only needs a few hours of Medicaid-funded home care each week, which is much less expensive than the cost of his institutionalization. And Brian was just one of six young men between the ages of 17 and 25 that CDR helped transition to the community from Monroe Community Hospital in an 18-month period. With support from CDR, Brian and his friends from MCH are now looking forward to the rest of their lives, independent and free.

...and save tax dollars too!

The following chart, prepared by NYSED/VESID, shows substantial savings to the state
from Independent Living Center (ILC) transition and diversion efforts:

New York State Independent Living Centers
Deinstitutionalization Cost Savings
2001 - 2005       48 Months*
State Fiscal Year
Item 2001-03** 2003-04 2004-05 TOTAL
Institutional Preventions 1,216 1,331 1,605 4,152
Institutional Terminations 281 288 222 791
Deinstitutionalization Savings $119,222,981 $115,525,533 $131,116,411 $365,864,925
NYS Funds Distributed for Voluntary Reporters $8,714,698 $4,099,991 $3,452,100 $16,266,789
Value Added*** $110,508,283 $111,425,542 $127,664,311 $349,598,136
*Not all voluntary reporting ILCs contributed 48 months of data.
**Project started SFY02-03 and included cumulative data for SFP 01-02.
***Savings minus budgeted NYS funding.

Transitioning From School to Life?
Increasing Knowledge of Available Resources
is the Key

by Candie Stiles

If you are the parent of a child between the ages of 14 and 21, you may have started to think about what the future holds for him or her after high school. During this period of time, parents often experience feelings of anxiety, uncertainty, and confusion about what lies ahead. Some of the questions that are going through your mind might include: How will my son or daughter decide what he or she would like to do after high school? How will I be able to discover what his or her strengths and skill areas are? What should I be doing now that will better prepare my child for the future?

The transition toolbox from VESID's website at www.vesid.nysed.gov/specialed/transition/toolbox/home.html is filled with a wealth of information that you will definitely find useful while assisting your child with the transition process. Making any kind of major life change is difficult for anyone, and it is crucial that you are aware of the guidance and supports that are available to you. You and your child do not have to try to figure things out on your own. Being resourceful and gathering as much knowledge as possible will give you confidence and better enable you to advocate for the services your child needs to make a smooth transition. Below is an explanation of what the transition tool box has to offer, and you are encouraged to take advantage of it.

First, you'll find a series of brochures describing the roles of various people who are involved in the transition planning process. Some of these participants include parents, students, regular and special education teachers, and vocational and rehabilitation counselors. Each of these brochures also gives a definition of what transition is, and then encourages the reader to ask himself several pertinent questions that will aid in guiding him to better work with the student.

The Strength Based Assessment is a tool that is helpful in facilitating structured discussions with the student, school, and family when planning for the future. This information assists in the development of transition services in the Individual Education Program (IEP). It can also be used to identify services and activities the student may need to succeed as an adult. The Strength Based Assessment is beneficial because the student is at the center of the discussion. It focuses on finding out a student's hopes and dreams for the future, discovering his strengths, talents, and abilities, and identifying what strategies and approaches will lead to success. It can also be used to develop individualized post-school outcomes statements for the student's IEP, and the student, parent, and school staff are the participants since they are the ones who know the student best.

The Transition Planning Inventory for Students and Families is a form designed to help students and their parents identify their future plans prior to attending transition planning meetings. As you the parent, your child, the school, and possibly a local agency begin working together to prepare your son or daughter for further education and community living, or to enter the world of work, this information is useful in guiding the process. You may wish to have you and your child answer the questions separately first, and then compare ideas and discuss them prior to coming to the IEP meeting. Sharing the completed questionnaire with the Committee on Special Education is one way to help them better understand your child's plans for the future. This inventory addresses several areas including vocational needs, plans for further education, future personal management and living arrangements, financial needs, and leisure and recreational interests.

Building Your Future: A Guide to Transition from School to Work and Community was developed by consumers to help students and families translate community service jargon and provide tips about advocating for yourself in the transition process. This resource discusses the laws and regulations governing transition planning, and thoroughly explains who should be at the IEP meeting, how to make informed decisions, the purpose and benefits of a vocational assessment, and how to speak up and advocate for yourself as well as your child. Ten transition planning areas are clearly described in this guide. These include occupational and vocational education, post-secondary and continuing education, self-advocacy, transportation, financial income, personal management and living options, medical health, employment, recreation and leisure, and other support needs such as counseling, respite, and getting involved in a social group.

The Student Advocacy Handbook gives planning tips for high school juniors and seniors transitioning to college. This book explores the skills that make a successful student, and describes how to request necessary accommodations. It even addresses some common difficulties faced by college students with disabilities. For example, many students have a tough time writing papers for their classes, and they often struggle with managing their time and turning in assignments when they are due. This guide explains, in detail, ways that students with various disabilities can help themselves be successful in college.

Lastly, the transition toolbox on the VESID web site contains a page of frequently-asked questions that provides answers about the transition planning and service process for students, parents, schools and community service providers. While reading through these questions, you should keep in mind that every situation is different, and complex circumstances may require a more refined response to address individual needs. Some of the questions listed are: What should be on a student's IEP regarding transition? Who is responsible for helping my child make a successful transition? What is the role of the VESID or CBVH counselor?

Although the transition process can be a challenge for everyone involved, support is available to help these changes be as smooth as possible. If you have any questions or concerns, please call STIC at 724-2111 (voice/TTY) and ask for the Transition Counselor.


CDPAP Beams with Pride

by Joy EarthDancer

Tioga County's Outstanding Personal Assistant for 2005 is Renee Hendrickson!
Renee has worked in CDPAP since 2001. Her current employer describes her as the reason he continues to be able to live in the community, because she "keeps up with all the tasks that allow me to live independently." Renee manages the housekeeping, prepares meals, and even helps with physical therapy to prevent stiffness. While shopping for groceries, Renee often "anticipates what I will need when I have forgotten to list it. She even brings me some of what she cooks for her family." Renee "is someone I have called my friend and I trust her to keep me living independent."
This sort of story is what we hear again and again from consumers who have found their "perfect" Personal Assistant. CDPAP was designed to create the possibility for just such a relationship because the program allows each consumer to find a worker who can both satisfy his or her individual needs and who is complimentary in temperament.
As we have noted before, it is personally satisfying to be a part of the process. We are proud of our Personal Assistants who do such good work every day and who often extend themselves beyond their job requirements. We are equally proud to serve consumers who remain independent through managing their own personal care services.


Early Childhood Activity Program at
Binghamton Zoo at Ross Park
Presented in Conjunction with
Early Childhood Direction Center at STIC

6 week session for 1x/week for 1 hour
Inclusive indoor program
Full of music, activities, movement, & animals visiting
For children 2-5 years with their parents/guardians or staff
EI Therapists welcome to join in
Adaptive equipment available
Accessible park education building with accessible bathrooms.

Presenter: Maria Muscatello: MA Sp. Ed.; AA Early Ch. Ed.; ECDC at STIC

Co-Presenter: Sue Lozinak: BA Psych.; ECDC at STIC

Musician: Candie Stiles: MA Sp. Ed., BA Music Therapy, Certificate in Assistive Technology

Session Choices:
Session II: Tuesdays, February 21 - March 28; 9:30 -10:30 am OR Wednesdays, February 22 - March 29; 9:30 -10:30

Session III: Tuesdays, April 4 -May 9; 9:30-10:30 am OR Wednesdays, April 5 - May 10; 9:30-10:30

Session IV: Tuesdays, May 16 - June 20; 9:30-10:30 am OR Wednesdays, May 17 - June 21; 9:30 -10:30

Choose any session and register today!
Limit 12 children.
Optional for Schools/Agencies: Field Trips

For more information on fees and the program, please call:
Candice at Ed. Dept., Binghamton Zoo
607-724-5461 ext. 231 or
Maria at STIC ECDC
(607) 724-2111 ext. 336 (voice/TTY)

New Faces

Carolyn Wheeler, BSW, MSW, CSW
I am very excited about working at STIC as a new Service Coordinator. I have my Master's Degree in Social Work from Marywood University. I am also the moderator of a Parent Support Group for parents of children with Sensory Processing Disorder (Sensory Integration Disorder). I feel very blessed to have the opportunity to work at STIC. I have never met a more committed, caring and professional staff. This is a great opportunity to learn from the staff and the consumers and their families as we work hard to promote independence.


For Sale: "Merits" folding power wheelchair: lightweight;18" seat width; programmable controller; flip back desk arms; foldable frame. Asking $2000. Call 724-2111 x 350 for details.


Spring 2006
Issue No. 82