There’s a System to Systems Advocacy

by Adam Cybulski

Here at Southern Tier Independence Center, we are making a return to our roots. As Ken wrote in the last issue, Systems Advocacy is an integral part of the disability movement, and without it, none of what we do here at STIC would be possible. In fact, without systems advocacy, the Independent Living movement wouldn’t exist.

And Systems Advocacy doesn’t work without you!

But what exactly is systems advocacy? Well, according to the Random House Dictionary, advocacy itself is defined as “the act of arguing on behalf of a particular issue, idea or person.” You’ve probably been advocating for yourself or a family member for years and never realized it. Any time you mention to a restaurant manager that the bathroom is inaccessible, or tell a teacher you feel your child’s placement is inappropriate, or tell your pastor that your church needs a better ramp, these are all examples of direct advocacy. Direct advocacy is important because it addresses a specific immediate problem, and is likely to get (relatively) immediate results.

Systems advocacy is advocacy directed at trying to change things on a larger scale. Rather than going into each and every restaurant to complain that the bathrooms aren’t accessible, we fought to pass the ADA to require that all public bathrooms be accessible. Rather than argue with a school district over every child they want to put in a segregated classroom, we try and convince the Board of Regents that segregated classrooms are inappropriate in general.

This style of advocacy can sound daunting at first. I mean, you’re setting out to make a fundamental change in the way society is run! But once you get your feet wet, you’ll find that it’s really nothing to be scared about.

Systems advocacy works the same way that direct advocacy works, although rather than you and a few other people advocating to get a small change made, you and lots of other people advocate to get a bigger change made.

STIC is a member of an advocacy organization made up of Centers for Independent Living (CILs) from around New York State, known as the Statewide Systems Advocacy Network (SSAN). Each center gathers a group of volunteers from amongst its supporters and consumers, who advocate by making phone calls, writing letters, or sending emails. When an issue comes up that needs advocating for, SSAN sends an alert to the CILs with information on the issue, and an action to take. The CILs then disseminate the information out to their volunteers.

SSAN’s funding has just been renewed, and we are currently attempting to recruit as many new volunteers as possible! This is your chance to get involved with STIC in a whole new way! In this newsletter, you will find “The Advocacy Primer”. It will give you background knowledge on several of the issues we are currently working on. Also, in the center of this newsletter is a tear-out survey. Fill it out and mail it back to STIC, or bring it in with you and drop it off, and someone will get in touch with you to discuss what opportunities to get involved fit you best. Alternatively, or if you have any questions about advocacy, the issues, or how to get involved, feel free to call STIC at (607) 724-2111 (voice/TTY) and ask for Adam.

Bad Weather?
If the weather is bad, call 724-2111 (voice/TTY) to make sure we’re open. The answering machine will explain why we’re closed. Listen to the entire message since we sometimes ask you to call back to check later in the day. If we’re going to be closed, the message will say so by 7:30 am. For Deaf consumers, there will be a generic TTY message saying we’re closed. This message is always the same no matter why we’re closed.
December 2007


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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Southern Tier Independence Center
24 Prospect Avenue
Binghamton, NY 13901

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All articles appearing in this newsletter are written by Ken Dibble except as noted.

Chipping Away at SCHIP

As we reported last issue, SCHIP, the State Children’s Health Insurance Program, is a federal Medicaid program that lets states provide health insurance coverage to children whose family incomes are up to 250% of the federal poverty level--that is, somewhat above the eligibility limits for standard Medicaid. Most of these families are among the “working poor”, whose jobs are unsteady, seasonal, or do not provide family health coverage. New York’s version of the program is called Child Health Plus.

Recently the Governor and Legislature agreed to ask the federal Centers for Medicare and Medicaid Services (CMS) to allow New York to raise its income eligibility for this program to 400% of the federal poverty level.

About the same time that happened, Congress began working on bills to reauthorize the program, which expires this year. The Democrats in both houses proposed a significant increase in funding, some of which is necessary to meet rising costs for those already enrolled; the rest would expand the program eligibility guidelines. Also the House (but not the Senate) included language to reverse the recent CMS decision to deny “spousal impoverishment” protections to married couples when one of them gets homecare through a Medicaid waiver (see At Last: Diversions End; Transition Begins). President Bush was opposed to any significant increase, and eventually vetoed two different bills. The Senate had the votes to override the vetoes but the House did not. The program is currently operating under a temporary extension at unchanged funding levels.

During the contention between Congress and the President over this issue, CMS issued a letter to states that severely restricted states’ ability to expand the program to children at income levels above 250% of poverty--so severely that such expansions would essentially be impossible. Several states already allow children at 300% of poverty to be served. CMS says those children would be unaffected. But no new states would be able to do this, and certainly New York’s 400% proposal--an early example of what is becoming a troubling pattern of unrealistic chutzpah on the part of new Governor Eliot Spitzer--is dead in the water.

CMS’s action violates some aspects of the federal SCHIP law, and it was taken without first providing an opportunity for public comment, as required by another federal law. So this fall, Spitzer announced a multi-state lawsuit against CMS over its letter. The following comes from a press release on his website:

“Illinois, Maryland, New Jersey, Washington, Arizona, California and New Hampshire will participate in litigation, either as plaintiffs or by filing supporting briefs, against the Bush Administration for violating the provisions of the SCHIP statute. The lawsuit will specifically challenge the rules that conflict with the SCHIP statute and were issued without an opportunity for public comment as required by the federal Administrative Procedures Act. The states are seeking a court ruling declaring those rules to be unlawful and prohibiting the federal government from applying the rules when reviewing individual state plans submitted under SCHIP.”

The Bush Administration has just about another year left. It’s very possible that this case may still be in the courts after they leave. It’s also possible that Congress will eventually produce another SCHIP expansion bill that is modest enough to squeeze out enough House Republican votes to override a veto. Only time will tell.

Early Bird Special on DOH Proposals

STIC has received word about what the state Department of Health (DOH) is proposing for the 2008-09 budget year. We must emphasize that these are only recommendations coming from DOH. They are not, as yet, part of Governor Spitzer’s budget plan, and may never be. However, they are very interesting. They include:

1. A new entry point for Medicaid applications that is operated directly by the state.

This would presumably bypass efforts by individual counties to hide the availability of certain types of services (such as Personal Assistance Services) or to deny eligibility purely to cut costs.

2. A single state-wide standard for single adults and childless couples rather than county-specific standard of need.

3. Changes to the application/eligibility determination processes for Medicaid, including:

     A. Elimination of finger imaging.
     B. Elimination of the face-to-face requirement at application.
     C. Elimination of the drug and alcohol screens for single adults/childless couples.

3. Covering foster children up to age 21.

This may be a reference to the new “Bridges to Health” program (see New Program: Bridges to Health).

4. Equalizing the resource test between Family Health Plus and Medicaid, and reducing the number of items that are considered resources.

All of these items are good news. Health care advocates have been calling for many of them for some time. However, we again remind you that these are DOH recommendations; they will not necessarily be in Spitzer’s budget proposal in January.

We have also learned some things about implementation of items in the current state budget.

“Self-attestation” begins in January for upstate residents. This means that for ordinary Medicaid, you won’t have to provide proof of income, residence, or child-care deductions when you are being re-certified for Medicaid. DOH will do a data search to verify what you tell them, though, and may ask for proof if something is questionable. Note: this does not apply to people receiving long-term care services under State Plan or waiver programs, or to people who have a Medicaid spend-down. And remember that it’s important to retain your full long-term care Medicaid if you are trying to get an exemption from Medicaid managed care on the basis of “looking like” somebody who is in a waiver program.

Family Health Plus Premium Assistance will be getting under way. This program subsidizes premium costs for employers that offer health insurance, and will also pay co-pays and deductibles.

Unfortunately, the guaranteed 12 months of Medicaid for people whose incomes or assets fluctuate frequently has not been implemented; this apparently has to be approved by the federal Centers for Medicare and Medicaid Services (CMS).

HAVA Havoc Continues

New York is the only state in the nation that has failed to comply with the voting machine accessibility requirements of the federal Help America Vote Act (HAVA). Despite being sued by the federal Department of Justice (DOJ), and being ordered by a federal district court to comply, the state’s feuding Board of Elections members have been unable to produce a plan to meet the law’s requirement that every polling place have at least one voting machine that is fully accessible to people with all types of disabilities.

That final target was supposed to have been met by November 2006. Two years before, New York forfeited $230 million in federal funds by failing to have an election reform plan in place by the 2004 elections.

There is no voting machine available off the shelf that is fully accessible to people with all types of disabilities, that can handle New York’s unique “full face” ballot, and that can provide a voter-verifiable paper trail. There is one machine that can allegedly be modified to meet these requirements, though the last we heard, the manufacturer was unable to provide a working demo model.

The feds only require that there be one accessible machine in each polling place, and that all of the state’s “pull-lever” machines be replaced with machines that create a permanent paper record. New York’s bullheaded insistence on its “full face” ballot (an antique design now used nowhere else in the US), has been the principal technical stumbling block. Another problem is the voter-verifiable paper trail--which also must be accessible to people who can’t read due to visual, cognitive, or intellectual disabilities. However, New York had the opportunity to push the voting machine market to meet these requirements by issuing clear specifications, taking bids, and contracting with one manufacturer for all machines in the state. Instead, the Board of Elections tried to foist responsibility for specs, bidding, and purchasing on the local voting districts, most of which don’t have the expertise to do a proper job.

The result was predictable; while most counties had one somewhat-accessible machine--for the entire county--in place by last November, this was clearly a wholesale failure to comply with the law and the court order enforcing it.

So this November, the political hacks on the state Board of Elections sent two plans to the federal court judge, simply because they couldn’t agree. One plan would have an accessible machine in each polling place by November 2008; the other plan isn’t even that specific. The Justice Department is now calling upon the court to take the state’s HAVA compliance process out of the hands of the Board of Elections and assign it to an independent entity.

That proposal has provoked outrage among some voting rights activists. According to Bo Lipari and the League of Women Voters, the feds are saying that in order to get this process moving, New York’s requirements that exceed those of HAVA should be dropped, including the voter-verifiable paper trail, and a mandate that voting machine software source code be placed in “escrow” so it can be inspected for bugs or malicious code if an election result is challenged.

We can’t independently verify this charge. Certainly the League of Women Voters has opposed electronic voting machines for many years, completely ignoring the voting rights of tens of millions of people with disabilities who must depend on them for access.

The League claims that no voting software can be secure because it’s just too complicated to get all the bugs out. This is false. A properly-designed, secure voting system is one of the simpler computer programs that can be written. Some complexity comes from accessibility features--but in a properly-designed system, those features are part of the underlying operating system, not the voting software itself. Some of the confusion stems from the notion that electronic voting machines have to be networked and hooked to the internet. That surely would be insecure--and also completely unnecessary and inappropriate. Also, critics of electronic voting have focused on the Diebold machines in use in many states. Those machines appear to have been deliberately tampered with; a Diebold official even made remarks to the effect that he was helping to deliver Republican votes. However, the Diebold machine is not under consideration in New York; it doesn’t meet either full-face ballot or accessibility requirements. In any case, the requirement for software escrow addresses this problem adequately.

By no means should New York be forced to drop its escrow and voter-verification requirements, nor should the state allow use of the Diebold machine. The state absolutely should be forced to drop the full-face ballot.

The Justice Department and the Board of Elections must appear in court again on December 20--possibly before you read this. A decision will follow, and we’ll keep you informed.

Medicaid Managed Care: Clarified Confusion

As we’ve reported, New York State is continuing to force people with disabilities who receive SSI benefits into Medicaid managed care, even though most of those people would qualify for exemptions or exclusions from the program. We published a list of exemptions and exclusions in our Winter 2006-07 issue. All of those, except those for people with severe and persistent mental illness, still apply (and while disabilities of that type no longer exempt people from mandatory managed care, specialized mental health services are “carved out” of managed care and remain available under the Medicaid State Plan). OMH Commissioner Michael Hogan recently told the state’s Most Integrated Setting Coordinating Council that about 60% of SSI recipients in New York are people with mental disabilities, broadly defined (see MISCC: Of Mental Health, and a Return to Stealth?)--though that does not mean that some of those people couldn’t be exempted or excluded for other reasons.

We’ve received some updated information on the managed care enrollment process from the state Department of Health (DOH) and other sources over the last few months.

1. According to some sources, SSI recipients who are on OMRDD Medicaid HCBS waivers should get a special tracking “code” that keeps them from being auto-enrolled at all, as long as they maintain their eligibility for those waivers.

2. There is a large group of people not on waivers whose disabilities and needs make them “look like” people who are on HCBS waivers. DOH announced changes to its policies for this group.

The information we have received is confusing. DOH seems to assume that people in this group who are 18 or younger are more likely to qualify for an exemption than adults. Since the definition of a “look alike” is functional without regard to age--that is, it’s anybody whose disabilities and needs are similar to people who are on any HCBS waiver--we don’t understand why this distinction is being made.

“Look alikes” who are over 18 get an extra 30 days to apply for an exemption ifthey request the forms before they are auto-enrolled, but they apparently still get another 5 months to apply after they are enrolled. Those under 18 (or their families) should be able to call a DOH enrollment counselor and get a temporary “presumptive exemption”. That means the counselor will either disenroll them if they’ve already been enrolled or put a hold on enrolling them; send them an exemption application packet; and give them 6 months to send it back with the required documentation. So both groups get 6 months to prove they’re entitled to an exemption. It’s possible to stop or reverse auto-enrollment for children during that period, but apparently not for adults. Also, all “look alike” exemptions, once finally approved after receipt of all required documentation, will be permanent.

3. DOH claims there is no “systemic problem” with SSI recipients being confused by the letter that “NY Medicaid CHOICE” has been sending out about this. However, they also said they would “review” the letter to see if it could be improved.

4. DOH clarified that case management may be available from managed care providers for people with significant needs.

5. Every Medicaid managed care plan operator is supposed to provide participants with a list of participating providers, and the list should indicate which providers are wheelchair-accessible.

6. Apparently some Medicaid managed care providers have been balking at providing home health or visiting nurse services to enrollees with disabilities. On the assumption that these providers were just confused about what they were supposed to do, DOH sent them a letter clarifying the following points:

     A. Although many people who need home health care or private duty nursing may qualify for exemptions from mandatory enrollment, if they choose to remain enrolled they are entitled to receive those services from the managed care plan.

     B. Managed care plan operators are responsible for ensuring that all necessary services are continued during the period when people with significant disabilities are transitioning from State Plan to managed care services, including access to non-participating providers, and access to State Plan services, until the providers and services can be offered through the managed care plan.

     C. Managed care participants can request a Medicaid Fair Hearing if the plan operator “denies a request for services or reduces suspends/terminates a treatment or plan benefit service currently being provided.” They can also appeal a denial to the plan operators or request an “external appeal”.

Once again, if you’re an SSI recipient, you have a good chance of being exempt or excluded from Medicaid managed care, if you request the forms and file an application. People with disabilities have historically been poorly served by managed care programs. We strongly urge you to apply for an exemption yourself, or get assistance from the professionals you work with to do so.

For more information or to request an exemption, contact:
NY Medicaid CHOICE
(800) 774-4241 (voice)
(888) 329-1541 (TTY)
M-F 8:30 am - 8:00 pm
Saturdays 10:00 am - 6:00 pm

Medicaid Transfer Suit Settled

by Peter Vollmer

Luberto v Daines was a statewide Medicaid class action suit that challenged New York State’s policy of terminating coverage to eligible Medicaid recipients simply because they relocated from one social services district to another. On November 13, 2007, a settlement was reached in the case and New York State agreed to end this policy.

Under the challenged policy, County A would cover the recipient until the end of the month following the month of relocation while County B theoretically processed and approved the new application during that abbreviated time period. And the moon is made of green cheese. In actuality, of course, County B would not even accept a new application (and start the 30-90 day processing time clock) until County A had closed the case--a guaranteed lapse in coverage that had particularly harsh consequences for home health and chronic care recipients, among many others.

Medicaid recipients who resided in facilities run by OMH or OMRDD were considered by the state’s Department of Health (DOH) to have resided in social services districts separate and apart from the social services districts within which the facilities were located. For example, residents in an OMH facility in Suffolk County who moved into an apartment across the street were considered to have moved “inter-district”, that is, from the generic OMH social services district to the Suffolk County social services district. What better way to be reintroduced into the community than to lose your Medicaid coverage (and the prescriptions that it would cover)?

DOH and the state’s Office of Temporary Disability Assistance (OTDA) have now agreed to require social services districts to seamlessly transition all Medicaid recipients who relocate inter-district without the termination/reapplication burden. Under the new procedures, Medicaid recipients need only inform County A of their new address in County B and any other material changes that might affect their Medicaid eligibility. County A will continue the Medicaid coverage until the end of the month following the month the relocation was reported (note that delays in the reporting of the relocation will not result in termination either). County B will automatically pick up coverage at the expiration of that time period even if ongoing eligibility is still being evaluated.

By summer DOH and OTDA will implement a plan to put these new procedures into effect. All social service districts should have been notified about this by the time you see this article.

Until the final plan is actually implemented, individual cases can be resolved through class counsel (that’s me). If you or someone you know moved from one to another social services district and your Medicaid was terminated, or is about to be terminated, for that reason, please let me know. Contact:
Peter Vollmer
Vollmer & Tanck, PC
500 North Broadway, Ste. 149
Jericho, New York 11753
(516) 870-0335

MISCC: Of Mental Health, and a Return to Stealth?

New York State’s Most Integrated Setting Coordinating Council is required to develop a comprehensive plan to change state disability-related policies and programs to ensure that people with disabilities who are eligible for services and supports receive them in the most integrated setting possible--that is, their own homes, and in the places where they work, shop and have fun.

The Spitzer Administration came into office with a flurry of MISCC activity. New state agency commissioners were appointed; the new chairperson, OMRDD Commissioner Diana Jones Ritter, immediately began talking about “accountability” and “deliverables”; and everybody echoed the new governor’s rhetoric about “people first” and “streamlined” services.

The new MISCC has now had three meetings; the latest took place on October 15, 2007. Once again, streaming video of the meeting was available from the MISCC website for a limited time, and once again, no written minutes were posted. Once again, the state agencies were mostly well-represented by their top executives. And once again, the Department of Health (DOH) was represented by a third-level staffer from its Office of Long Term Care--and not even the same person who attended the July meeting. DOH Commissioner Richard Daines, who, because he controls the Medicaid program, runs the single most important disability service agency in the state, has yet to show his face at a MISCC meeting.

Ritter opened with a prepared response to queries about what has been done with the input from this summer’s People First Forums that were held to get public comment on disability-related issues. She said that as the four Commissioners traveled around the state for the forums, they “bonded”, and claimed this was important because they are now truly working collaboratively. She noted that state agencies should also be looking closely at their regulations to see if they’re “really” preventing them from “doing what we need to do.” Then she ticked off several items:

DOH will share any Requests for Proposals they release for new (and, presumably, renewal of existing) programs with the other state agencies to ensure “coordination”. It wasn’t clear whether they will do this prior to releasing them in order to avoid duplication of effort, or after the fact--which wouldn’t be very helpful.

The State Office of Mental Health (OMH) has formed a task force on co-occurring disorders with the Office of Alcohol and Substance Abuse Services (OASAS).

Ritter and OMH Commissioner Mike Hogan are working together on a “model” for collaboration between their regional offices. The regional office heads for both agencies are being told they have to collaborate, and they’re planning a meeting of all of them later this year to work on it.

The counties have separate needs assessment and planning processes for services for people with developmental disabilities, mental disabilities, substance abuse issues, and generic health services. OASAS is going to “share” its planning process with the other agencies. Presumably this means they’ll share the results from each county after the planning is done. The counties are allegedly “very happy” with this. But this would be less useful than doing all the planning at once in a holistic manner. Ritter asked, “Why should there be four separate planning processes?” and implied she’d be interested in consolidating them. That would be a very good idea. It would probably require legislation, since the planning process is enshrined in the state Mental Hygiene law. However, the MISCC should propose legislative changes when needed to achieve its goals.

The fact that the state disability service agencies operate as competing and unaccountable bureaucratic fiefdoms (the new Commissioners call them “silos”) is old news. Decades ago, in the Cuomo years, a law was passed to create an “Inter Office Coordinating Council” (IOCC) to address this problem. That council behaved much like the old MISCC--its members met and talked at each other about what they each did. They also produced some “Memorandums of Understanding” that were supposed to formalize coordination between the state agencies. Mostly though, they formalized boundaries between them, such as the one that keeps children with co-occurring developmental and mental disabilities from getting served adequately by either system. One reason that disability advocates staged sit-ins in Albany to get the MISCC started was that the IOCC was a complete failure. Ritter, however, has revived the IOCC under the chairpersonship of OASAS Commissioner Karen Carpenter-Palumbo.

And finally, Ritter said that the MISCC will focus on its new Housing, Transportation, and Employment task forces. The Housing task force has been in existence since April. The Transportation task force was created at this meeting. Creation of the Employment task force is scheduled for the January 2008 meeting.

MISCC community member Harvey Rosenthal, Director of the New York Association of Psychiatric Rehabilitation Services, strongly urged Ritter to demand accountability for real results from these task forces.

Next the meeting moved on to presentations from state agencies on what they’re doing to further the MISCC agenda.

OMH Commissioner Mike Hogan gave an interesting overview of the current state of mental health services in the state and nation. He said that most people with mental health issues are not served by the mental health system, and that every school classroom in the state contains between 1 and 5 students with some mental health or behavioral issue. (This meshed well with a discussion STIC’s Citizenship Advocacy Committee had recently concerning the failure of most school districts to address this fact in a coordinated and proactive manner.) Hogan also claimed that about 60% of SSI recipients in New York have mental disabilities, and he mentioned that people with disabilities have the highest rate of unemployment--80%--of all disability groups, and the poorest vocational rehabilitation outcomes. He also said that the average age of onset for significant mental illness is 14. The message was clear that as we improve our understanding of mental illness, we’re going to have to increasingly focus on children.

Hogan displayed a chart showing how creation of new programs at the state and federal levels to address emerging needs over time has led to fragmentation of services, something that everybody already knows and a point to which other agency heads gleefully returned during their own presentations. Hogan then explained that we have at least 5 separate systems in the state for dealing with mental health issues and that these systems are still too focused on inpatient care. He said that the only real hope we have for addressing the need adequately is to screen children early and to provide well-trained counselors and other early-response services at the primary care level--that is, in schools, family practice offices and walk-in clinics. Finally, he noted that efforts to reform the system have failed due to “small-p political issues”--meaning, turf wars among the agencies and their friends in the legislature and various interest groups.

Hogan also argued that there are limits to what can be achieved by interagency collaboration. He claimed that “vanilla” services aren’t very effective for people with mental illness and that there must always be a focus on increasing specialized services. He also said that New York State has no low-income housing production strategy and that Spitzer’s historically impressive 2000-unit increase in housing services for the current budget year (1000 new units, 1000 supported housing “slots”) is in fact a drop in the bucket compared to actual need. Although Hogan clearly understands the issues and supports community-based services, he just as clearly doesn’t like being asked to collaborate with other agencies and doesn’t expect much from the MISCC.

Next came a presentation on the Housing Task Force’s activities from Department of Housing and Community Renewal (DHCR) Commissioner Deborah VanAmerongen. The task force has created mission and vision statements, and is focusing on three issues: rent subsidies, how to use and improve data about housing needs and services, and outreach and education. DHCR is beefing up its support for the housing registry operated by the Center for Independence of the Disabled in New York (CIDNY, the Center for Independent Living in Manhattan). They are now requiring housing developers to notify CIDNY of the availability of accessible or adaptable housing units at least 90 days before publicly marketing them. DHCR also plans to make unspecified improvements to their planning process for use of federal housing funds, in the areas of accessibility, adaptability, and visitability. They are working on ways to help developers market accessible units. And finally, VanAmerongen spoke about increasing set-asides for collaborations with other agencies on supportive housing projects, where DHCR would link housing units with support services from the other agencies.

Later, Bruce Darling questioned the emphasis on supported housing, given that there are large numbers of people with disabilities who just need low-cost accessible housing and aren’t looking for support services. (We would add that OMRDD and OMH already have big budgets for supported housing and that the most significant housing need is for people not served by those agencies.) VanAmerongen assured Darling that it was a matter of “language” and that she didn’t mean to exclude people who just need bricks and mortar from her plans.

Ron Epstein, representing the NYS Department of Transportation, was next. He emphasized that DOT doesn’t provide direct services and his focus was on another old idea that has failed--coordinating existing fragmented transportation providers, ranging from large mass transit systems, to local offices of state agencies, to small not-for-profit agencies that have an accessible van--to ensure maximum use of resources. On this unpromising note, members were chosen for the new Transportation Workgroup, including all of the state agency representatives plus Harvey Rosenthal, and Cliff Perez, a non-member from the Independent Living movement who has transportation expertise. It was suggested that statewide rural and mass transit advocacy groups also participate.

As Ritter moved to seek input from the “audience”--including Independent Living activists Bruce Darling and Chris Hilderbrant--Rosenthal interrupted to ask about progress on state agencies’ collection of input from their stakeholder groups. It emerged that while some agencies had held meetings--including OMRDD with its pseudo-independent Self Advocacy Association of New York--most had not. Several claimed this was because they were waiting on legislative approval of appointments to their formal advisory boards.

Rosenthal pointed out that there have been successful transportation coordination programs in other states that should be investigated, and he again urged that there be accountability for the results of these meetings.

After all this, only 15 minutes remained for public comment. Bruce Darling rose to once again report that Monroe County is still violating state and federal Medicaid law by refusing to provide State Plan Personal Care services, and its Long Term Care Coordinating Council has refused to involve Darling or provide a link to his agency’s Consumer Directed Personal Assistance program on its website. Darling said he had nowhere else to bring this local issue because he had no access to local authorities.

This is clearly a personality conflict that results from Darling’s persistent and sometimes aggressive advocacy. However, Darling is a nationally-recognized expert on long term care issues for people with disabilities and he absolutely belongs on any planning body working on that issue in his community. And once again, NYS Office for Aging Director Michael Burgess strongly agreed with Darling that he should be on the Coordinating Council and stated that he’d sent a letter to county officials about it. Burgess also strongly agreed that Medicaid law should be enforced. The representative from DOH, where the enforcement responsibility lies, was silent.

Ritter said this would be a good issue to bring to the IOCC and asked Darling if he had any statewide issues. Darling pointed out that several community MISCC members had stopped attending meetings and that perhaps it was time to replace them with more active members. Ritter acknowledged this point without fully committing to do anything about it.

Then Chris Hilderbrant, who, like Darling, is from the Center for Disability Rights in Rochester, spoke. He pointed out that paratransit service, which is subsidized with federal dollars, is uniformly bad around the state. He suggested that individual service users be allowed to choose where their shares of subsidy dollars go--whether to transit authorities, cab services, or private paratransit providers--to encourage competition and increase quality. Hilderbrant also noted that with the new task forces, there wasn’t much discussion of existing disability services, that huge problems with quality and quantity of those services remain, and that the MISCC must not lose focus on that point. Finally, he expressed frustration with the lack of proposals for future action in Hogan’s presentation, and with the slowness of the stakeholder meeting process.

The promise of collaboration between agencies to address services for people with co-occuring disorders, especially Ritter’s apparent intention to ensure that her underlings follow through on this item, is encouraging.

However, we are increasingly concerned about the MISCC process. Unlike the MISCC, the IOCC doesn’t have a legal mandate for serious systems change, and it is not required to involve people with disabilities and their advocates in its process. It’s beginning to look as though Ritter’s strategy is to turn the MISCC into a forum for discussion of feel-good special-project “collaborations” on housing, transportation, and employment, while moving the biggest problem of all--insufficient quantities of low-quality, paternalistic, rigid existing disability support services, most of which are only available reliably in segregated settings, and most of which are highly inefficient because redundant administrative and operational facilities are spread across multiple agencies--behind the unaccountable closed doors of the IOCC. If that’s the case, it’s a recipe for business as usual--a recipe for failure.

New Program: Bridges to Health

(edited from a Spitzer press release)
New York’s new Bridges to Health program is intended to expand support services to thousands of children in foster care with serious disabilities. It is the first of its kind in the nation, enrolling children in foster care exclusively.

Bridges to Health targets foster children who have developmental disabilities, mental health diagnoses, and medical problems that are so severe they would otherwise likely be in restrictive and high-cost institutions. By making services available to these children, the state will help them function in family and community settings instead. The program will be launched in early 2008 and will serve more than 3,300 foster children when it is fully implemented.

Services provided to children through the Bridges to Health program will include skill building, habilitation, pre-vocational training and supported employment, and specialized adaptive and assistive equipment, among others. The children and their families are also eligible to receive support services to help provide the best environment possible for the children. These services include specially designed crisis and respite services and advocacy for the children’s participation in school and other community activities.

The program will be financed by Medicaid and implemented through collaboration between the Department of Health and the Office of Children and Family Services, which oversees the care of the almost 27,000 children in foster care throughout New York State. The Office of Mental Health and the Office of Mental Retardation and Developmental Disabilities assisted in the design of the program. An integral part of the program is assessing the progress the children are making as a result of the program’s services to enable continual evaluation.

To implement the program, the Office of Children and Family Services (OCFS) will enter into contracts with not-for-profit providers and work with local Departments of Social Services to provide appropriate services.

This program was promoted as part of the Governor’s Children’s Agenda, which includes expanding health insurance coverage to all children without insurance, expanding children’s access to high quality pre-kindergarten and early learning programs, and naming a pre-school special education task force to improve special education opportunities for children with special needs.

No (Nondisabled) Child Left Behind?

Recently in our Citizenship Advocacy Committee we talked about schools’ lack of a systematic approach to working with children whose disabilities involve behavioral issues. These disabilities are very common in the schools in our region. In fact, according to New York State Office of Mental Health (OMH) Commissioner Michael Hogan, every classroom in the state has between 1 and 5 children who have some kind of significant emotional or behavioral issue (see MISCC: Of Mental Health, and a Return to Stealth?). There are some interesting and effective approaches in use here and there, but usually school personnel, instead of dealing with these disabilities in a proactive, coordinated manner, approach them in “crisis mode”. Many teachers, aides, and administrators don’t want to take these children’s issues seriously and work with them, don’t know how to do so, or both.

Under the Individuals with Disabilities Education Act (IDEA), these children should have carefully designed intervention plans that involve positive behavioral supports. With effective planning, and cooperation in carrying out the plans, most of these children can do as well academically as any other child, and they should be expected to do so. This is a systems change issue that must be addressed.

But IDEA isn’t the only federal law that addresses education for children with disabilities. The No Child Left Behind Act (NCLB) is supposed to ensure that schools are evaluated on the educational results they achieve for all children, including those with disabilities. The idea is that schools have to do as good a job with children with disabilities as they do with other kids.

NCLB has not been popular with many school districts; they apparently don’t like being asked to show that they meet reasonable education standards. Many districts have made children with disabilities the scapegoats, claiming that including them brings their overall scores down.

However, the vast majority of children with disabilities in schools do not have any intellectual limitations. Most have learning disabilities, which means they need different techniques and supports in order to take in information and communicate what they’ve learned. Another large group is children with emotional and behavioral issues. These children need supports to stay in a good frame of mind to learn in school and get their homework done. Very effective techniques to enable these children to do well academically are available to schools. And NCLB’s evaluation requirements allow work-arounds to address the relatively small number of students with intellectual disabilities. The notion that school evaluation results are being held down by unrealistic expectations for children with disabilities is false.

But as the law comes due for reauthorization in Congress, a strong effort is being made to water it down, especially by taking the heat off schools for how they treat students with disabilities. For example, one proposal to weaken the law was to use schools’ performance on meeting IEP goals as evidence of “Adequate Yearly Progress” under NCLB evaluation rules. As the National Down Syndrome Society says on its website, “IEP goals address the skills that students with disabilities need to acquire in order to access the general education curriculum. These goals do not replace the curriculum. You would never want to limit your child’s education to his or her IEP goals, therefore accountability for your child’s education should not be limited to those goals.”

There’s an organized effort to convince lawmakers that the schools’ objections are a matter of compassionate concern; that NCLB is killing educators’ alleged previous enthusiasm for integrating children with disabilities into regular classrooms. While there has been greater integration for students with disabilities in many states (New York lags well behind), this has often not included a full transfer of special education resources into those classrooms. In other words, the “enthusiasm” was about saving money, not about integration, and NCLB is making it clear that the money, and the supports it pays for, must follow those children. We understand this is not an easy thing to do. The feds have never come through with the special education funding they’ve promised for decades. Despite all the hoopla about declining educational quality and competition with foreign workers we hear in the press, the typical American taxpayer doesn’t care enough about this issue to vote for people who will put their money where their mouths are.

The National Down Syndrome Society has prepared some excellent, detailed comments on the proposed changes to the NCLB Act. They emphasize that all requirements pertaining to training for all general education teachers and principals should include a mandate that they be trained to meet the needs of children with disabilities according to a principle called “Universal Design for Learning”, or UDL.

UDL is based on research that shows that methods for enriching educational experiences for children with disabilities work just as well with nondisabled children with diverse backgrounds and needs. “Universal” doesn’t mean one size fits all; individual approaches are needed to get the best results with every student, disabled or not. But UDL envisions applying the techniques that work well with children with disabilities to all teaching situations. Those techniques include “multiple means of representation, to give learners various ways of acquiring information and knowledge; multiple means of expression, to provide learners alternatives for demonstrating what they know; and multiple means of engagement, to tap into learners’ interests, challenge them appropriately, and motivate them to learn.”

More information on NCLB can be found at:

For more information on Universal Design for Learning, go to:

People who are concerned about inclusive education for children with disabilities will want to pay close attention to the NCLB re-authorization debate as it heats up this winter.

Say “Wheeee!” for WIA

Congress has started work on the next round of amendments to the federal Rehabilitation Act, which is now called the Work Incentives Act (WIA). So far, we only have information on changes being discussed for the act’s major vocational rehabilitation provisions--nothing on Independent Living or Projects with Industry. The information comes from a draft prepared by staff of the Senate Health, Education, Labor and Pensions (HELP) Committee.

The biggest changes would involve transition services.

Transition services would be available to students aged 16 to 22 who are receiving IDEA services in school, or to any person in that age range who meets the disability definition under Section 504 of the Rehab Act. State vocational rehabilitation agencies (like VESID) that implement an “order of selection” (a rationing plan that is supposed to ensure that those who most need the services go to the head of the line when funds are scarce) would have to include students who meet the SSI disability definition, along with students with “the most significant disabilities”, at the top of the priority list.

A student’s Individual Plan of Employment (IPE) could include a “projected” post-school employment income instead of a “definite” one. We’re not sure what effect this would have in practice.

Once federal appropriations for VR services reach a certain level, states would have to use a portion of those funds specifically to expand or improve transition services.

Among other changes:

A new VR service called “Customized Employment” would be created. This appears to include many of the things supported employment programs do under the name of “Job Development”, such as trial placements or “job shadowing”, and negotiating job descriptions with employers. It also includes provision of some ongoing services and supports on the job, another feature of supported employment. The interesting thing is, “Customized Employment” appears to be a separate service, not connected with supported employment, and therefore presumably could be provided to people not found eligible for or in need of full-blown supported employment.

The 18-month general limit on supported employment services would be removed, thereby eliminating the need to apply for extensions.

State VR agencies would have to include a “literacy” (basic reading, writing, and arithmetic) assessment when assessing people’s needs for VR services.

The notion of “post-employment services”, only referred to currently in a comment in the federal regulations, would be defined in law--though without any mention of their scope.

These are very early proposals and there could very well be significant changes before any bill becomes law. We’ll continue to follow this issue.

Self Help Issues and Answers

The Advocacy Primer

by Adam Cybulski

There has been a lot of talk about systems advocacy in the last couple of issues and we thought it would be helpful to publish a small explanation of many of the various topics that we here at STIC are focusing on. If you would like to learn more about these issues, or learn how to get involved, please call Adam at STIC, 724-2111 (voice/TTY).
Health Care
Opposing Medicaid Cuts: STIC often focuses a large advocacy effort on opposing the cuts to Medicaid beneficiaries that are proposed in the NYS budget every year. We were lucky this year, and for the first time in recent memory, there were virtually no major proposed benefit cuts in this year’s budget. However, we must remain vigilant to ensure that this trend continues.

Promoting Universal Health Care: The phrase “universal health care” simply refers to a system in which all individuals are able to get necessary medical treatment, regardless of income or other factors. The United States is alone among developed nations in its lack of a universal health care system. There are several models of universal health care systems within two broad categories. In “single payer” models, health care for everyone is publicly funded and paid for by the government (like in Canada). In “conglomerate” models, a combination of public programs such as Medicaid, and private insurance, is used to ensure coverage for all. While these are the two basic models, their implementation varies extensively from country to country. STIC supports efforts to implement universal health care in New York and nationwide. We are working with several other agencies and coalitions to raise awareness and promote this ideal. The governor and the NYS Legislature have both commissioned studies to identify various approaches to achieve universal health care in New York. A proposal from the governor’s task force is expected by spring 2008.

Expanding EPIC: New York’s Elderly Pharmaceutical Insurance Coverage (EPIC) is a cost sharing program designed to help seniors alleviate the large cost of prescription medications, and is currently only available to individuals over the age of 65. Many people with disabilities live on marginal incomes, and do not qualify for Medicaid, and are often on a considerable number of medications. STIC advocates that EPIC should be expanded to people with disabilities of all ages. Thanks to the implementation of Medicare part D, the EPIC program has seen considerable savings in the last couple of years, making this the ideal time to expand it to people with disabilities.
Civil Rights
ADA Restoration: The Americans with Disabilities Act (ADA) was signed into law in 1990. It implemented accessibility standards for businesses and public buildings, and was intended to prevent people from being discriminated against on the basis of disability. Employers who had discrimination suits brought against them, who had terminated employees because of their disabilities, argued that the terminated employees weren’t disabled enough to meet the definition of “disability” set forth in the ADA, and therefore the law did not apply. The Supreme Court agreed with them in several cases. We are currently advocating for legislation that is pending in Congress that will fix the definition to ensure that anyone discriminated against on the basis of disability is protected.

Waiving Sovereign Immunity: “Sovereign immunity” means states get to decide whether or not citizens can sue them for money damages. The US Supreme Court has found that this applies to lawsuits against states accused of violating the ADA’s Title I provisions against employment discrimination. So if an employee of the state is unfairly terminated based on the grounds of disability, they can’t sue for compensation unless the state agrees to be sued. This immunity can be waived by the state through legislation. STIC supports legislation waiving the state’s sovereign immunity, which would force the state to comply with ADA just like any other employer.

HAVA: The Help America Vote Act was passed in 2002 to modernize voting systems nationwide, in hopes of preventing another fiasco like the Presidential election of 2000. It required states to purchase new voting machines, and at least one per polling site had to be fully accessible for people with disabilities. New York has yet to implement the standards required in the legislation, despite being several years past the deadline.

Community Integration/Olmstead:Olmstead” was a US Supreme Court decision in which two women with mental disabilities were being kept in a state-run psychiatric hospital despite the facility doctor’s decision that they were appropriate for community placement. The Supreme Court decided that if an individual is eligible for institutional services, but wants, and is “appropriate for”, community-based services, then the state has to provide services in the community “with all deliberate speed”. STIC is working to improve the ability of several state agencies to meet their obligations to implement policies that are in line with the Olmstead decision.
Integrated Summer Programs: Children with certain disabilities are eligible for “extended year services” through their schools. These services are intended to help the child maintain the social and behavioral skills that they have learned during the school year. Currently all the area school districts send these children to a segregated program through BOCES. STIC is working on ways to integrate these services back into the school districts. One proposal is to work with districts to help them overcome the barriers that are preventing them from integrating these students into existing summer programs for nondisabled students.
Since the ADA was passed in 1990, the percentage of Americans with disabilities who are employed has actually declined. On-line/computer-based job applications and personality tests pose new barriers to employment for people with disabilities. STIC is looking into these issues, and also working to promote supported employment (which takes place in a traditional employment setting) over sheltered workshops (which are segregated facilities where people with disabilities typically perform menial labor with little to no chance for promotion).

Consumer Involvement Survey

Name ___________________________________
City and zip _______________________________
Which of the following advocacy topics are you interested in?

___ Health Care - The health care advocacy team focuses around issues such as universal health care, prescription drug care, Medicaid, and mental health issues, including CPEP.

___ Education - The education advocacy team focuses on issues affecting students with disabilities; specifically, integrated summer programs, improved opportunities for children with dual diagnosis, and improving the availability of family programs.

___ Community Integration - The community integration team focuses on issues surrounding the Olmstead decision, which allows people with disabilities to live in the most integrated setting possible. This revolves highly around fighting the flaws in the legislation and regulations that push people into large institutions against their wishes.

___ Employment - The employment committee focuses on barriers to employment for individuals with disabilities, including online job applications and pre-screening assessments. It also focuses on increasing the awareness of supported employment as an option for people with disabilities.

___ Civil Rights - The Civil Rights team focuses on NYS human rights laws concerning people with disabilities, ADA, accessibility, HAVA, voting, etc.

What dates and times would be best for you if there was a meeting you were interested in attending? (Circle all available times)

Midday (lunch)
Midday (lunch)
Midday (lunch)
Midday (lunch)
Midday (lunch)

Do you have any advocacy issues that you currently work on?

Yes / No

If yes, what are they? If no, what has kept you from becoming more involved?
Are there any issues that you are concerned about that are not listed on this form?
Would you be interested in attending advocacy training workshops?

Yes / No

What is the best method of contacting you?

Phone, E-mail, Regular mail.

Rabbit and Turtle

by Michael Osenni

One day rabbit found the fastest power wheelchair in New York City. After he bought it, he went to test drive it around Central Park. He was so amazed at how fast it could go.

While he was driving, he noticed his friend Turtle wheeling toward him in his manual wheelchair. Rabbit challenged him to race him through the park. Turtle agreed to race him to the biggest tree. They lined up next to each other by a street light. Rabbit counted down, 3,2,1... Go! Rabbit sped away while Turtle was trying to keep up.

Then Rabbit stopped to feed the pigeons. Meanwhile, Turtle was still going towards the finish line. After Rabbit ran out of food for the pigeons, he was hungry. While he was eating, his friend Squirrel wanted to see his new chair and talk about his vacation.

After five minutes, Rabbit remembered that he had a race to win. He didn’t see Turtle anywhere, but he kept on driving toward the finish line. After he crossed the finish line, he looked over at the big tree and saw Turtle sitting in the shade reading the newspaper.

Rabbit went over and asked, “How did you beat me? My power chair is the fastest in town.”

Turtle said, “Well you were distracted from reaching your goal. If you just focused on reaching your goal and stayed with it, you would have been successful.”


At Last: Diversions End; Transition Begins

by Maria Dibble

STIC is pleased to announce significant movement in the implementation of the Medicaid Nursing Home Transition and Diversion (NHTD) waiver and the Regional Resource Development Centers (RRDCs) that will oversee it.

As you may remember, STIC was awarded the NHTD RRDC for the Binghamton/Southern Tier Region and was then asked by the NYS Department of Health (DOH) to assume responsibility for the Syracuse Region also, to which we reluctantly agreed.

It has been a long road since the grant awards, mostly lots of waiting as the Bush Administration’s Centers for Medicare and Medicaid Services (CMS) negotiated with New York on some major disagreements with the state’s waiver application.

The issue is very complicated, but essentially, after a couple of decades of federal Medicaid policy intended to keep married couples and families together, CMS reversed its position and severely reduced the amount of income that a nondisabled spouse could keep while a spouse with a disability is being served under the waiver. Even worse, CMS demanded that this change only apply to the NHTD waiver, allowing spouses to keep much more money if the partner with the disability goes into a nursing home. There was no change to Medicaid law that justified this reversal, nor does CMS have the legal authority to change the regulations on its own without subjecting them to public comment. Although CMS refused to back down on its legally questionable demands, advocates and the Spitzer Administration finally decided that if we didn’t move ahead with this crucial program everyone would lose, so we’ve put aside our concerns until after the next presidential election.

Once DOH was ready to move toward implementation, there followed contract negotiations, development of work plans and all the other time-consuming paperwork that goes into any new program. But the waiting is now over and the NHTD RRDCs are almost fully staffed and will hit the ground running very soon.

STIC already operates the very successful Traumatic Brain Injury (TBI) RRDC for the Binghamton/Southern Tier Region, and one of its Regional Resource Development Specialists, Al Jennings, has moved into the Coordinator’s position, overseeing the TBI and both NHTD RRDCs. I apologize for all the long titles and names and their inevitable acronyms, but I assure you I didn’t come up with them. I sometimes get as confused over all of them as you probably are by now.

We’ve hired approximately eight new staff for the RRDC programs and we’ve been busily converting meeting space to offices; purchasing desks, computers and equipment; installing phone and computer jacks; and doing all the other things that need to be done to make things run smoothly and allow us to produce the reams of paperwork necessary to keep Medicaid and DOH happy. My apologies to the trees.

Now that we've gotten beyond that, we are looking forward to actually implementing the waiver. This new program is probably one of the most significant initiatives to be started in New York in decades, in terms of its potential to liberate people from nursing homes and get them back into their own homes in their communities. This program will serve people with both physical and cognitive disabilities who don’t fit into any other waiver. That includes individuals with MS, Alzheimer’s disease, spinal cord injuries and others who have always fallen through the cracks for any services that would help them to leave nursing homes or prevent them going into one. Of course, it is voluntary. We won’t be forcing people to leave nursing facilities if they don’t want to, but we already know that thousands are eager to move back home all around the state.

Who is eligible? Any Medicaid-eligible person with a physical or cognitive disability who doesn’t qualify for other waivers and who is determined to be disabled enough for nursing home placement, or who is already in a nursing home.

What services are available? There are actually too many to mention here but among them are: Peer Counseling, Independent Living Skills Training, Home and Community Support Services, Housing Assistance, and many more. The goal is to help people to be as independent as possible in their own homes, with the supports and services necessary to achieve their optimal independence.

For more information on this new and exciting program, call Al Jennings or Laura O’Hara at (607) 724-2111 (voice/TTY).

New Faces

Thea Arnold
I’m the new Parent Mentor Advocate for STIC. I work part-time assisting the parents of children with disabilities to navigate the education system. An education advocate can help with drafting the Individualized Education Plan (IEP), organizing team meetings, brainstorming about strategies for inclusion, and figuring out the most appropriate placement for your child. I do consultations over the phone and am available to accompany parents to meetings. I can also offer advice on record-keeping.

My background is in education: I taught college-level history for years. Then I had my daughter, who has multiple disabilities--in addition to a mischievous personality and an awesome smile--and my focus shifted to the world of children with disabilities. I began to work for Parent to Parent, a dynamic organization that shares information about resources and connects parents to each other based on their children’s challenge(s). Thanks to our county’s amazing Early Intervention program and to STIC’s services, my daughter is doing well. So as an education advocate I bring to bear both personal as well as professional experience.
Diane J. Button
I am thrilled to be a STICster! I moved to Binghamton in 2000 from the Harford/New Milford, PA area after being employed in the Binghamton area most of the previous 20 years. My administrative employment history includes everything from the financial investment and public education finance fields to manufacturing, law and even a funeral home. Although I can honestly say I enjoyed each position, it became a fairly recent desire of mine to obtain a position in a service area where I would feel like what I would be doing would improve the lives of the people I help serve, at least in some small way. Although I certainly don’t have the life changing positive effect on our consumers’ lives that other STICsters have, I find it extremely gratifying to do my little part. Being a part of STIC also has special meaning to me because my brother was born with many orthopedic disabilities. Last, but certainly not least, the STICsters are the greatest group of people I have ever worked with!
Todd Fedyshyn
I am a new Regional Resource Development Specialist in the TBI/RRDC office, located here at STIC. I have been working in the human services field for over 15 years, with jobs ranging from OMRDD services, to at-risk adolescence for crisis prevention, and currently with traumatic brain injury survivors. I am excited to become part of the STIC family and look forward to the opportunity of helping the individuals we serve throughout the Southern Tier. I enjoy all kinds of music and have been known to play the drums from time to time. I also love to ride my motorcycle and build web sites/graphic design.
Anita Ferris
I’m an RN working with the NHTD Waiver. In my career, I’ve worked in hospitals, nursing homes and in the community. I’ve worked in geriatrics and pediatrics. Most recently, I have worked with two waiver programs: the Care at Home Waiver and the TBI Waiver. Those waivers covered birth through adult ages.

I live locally with my husband and 2 cats. We enjoy our boat in the summer and I enjoy playing tennis all year.
Stanley J. Johns II
I recently joined the staff of the NHTD Medicaid Waiver Program for the Syracuse Region. I am a Binghamton University alumnus with an undergraduate degree in history and graduate degree in social science. I was born and raised in New York City. I have been working in the mental health field for the past 10 years, mostly with children and families, and this new position will be somewhat of a transition for me in working with people with disabilities and elderly people. I also have two children (girl and boy), currently aged 12 and 4 respectively. I look forward to working with the agency and being a part of a wonderful team and family.
Shannon Smith
I am a mother of two beautiful girls, Allison - 7 and Keira - 2, and an okay wife to my husband, Al. We all live in Windsor and enjoy small town living. I am a new Medicaid Service Coordinator, hired in late October. I previously worked for Broome County Head Start, at the Palmer site, as a preschool teacher. I enjoy working with children and their families and am very excited about my position with STIC.

A Sad Farewell

The staff, board members and consumers of STIC have said a sad farewell to Jennifer Ayala, who worked here as Systems Advocacy Coordinator for several years. Jen passed away in November. We send our condolences to her family, and we’re planning to include a full tribute to Jen in our next issue.

Community Programs

Home of Your Own Expands to Parents

Parents of individuals with developmental disabilities, mental retardation or mental illness can now apply for mortgages under the Home of Your Own (HOYO) Program, which is financed by the State of New York Mortgage Agency (SONYMA).

The Home of Your Own Program--run jointly by SONYMA, the NYS Office of Mental Retardation and Development Disabilities (OMRDD) and the NYS Office of Mental Health (OMH)--helps people with developmental disabilities or mental illness purchase homes with SONYMA mortgages issued at very favorable terms.

Enabling parents to apply for SONYMA mortgages will ease the financial burdens on families and improve their ability to provide for the needs of their children.

The Home of Your Own Program offers very favorable mortgage terms for eligible applicants. Under the program, OMRDD and OMH refer applicants--and now their parents--to SONYMA after they complete a homebuyer counseling program. To be eligible, applicants must be first-time homebuyers and have incomes of no more than 80% of the area median income in the region where they live. There is also a limit on the purchase price, which varies by location.

The program offers a very low 4% fixed interest rate on mortgages of 30 or 40 years, 100% financing, and reduced closing costs. Closing cost assistance is also available from SONYMA. The program is offered exclusively through M&T Bank, which has agreed to forgo or reduce some of its normal closing costs.

The program is available for homes, condos, co-ops and double-wide mobile homes permanently affixed to real property. Accessibility improvements are funded by OMRDD or OMH as needed.

Since the program was introduced in 1996, 189 households have used $13.2 million to finance their homes.

“We are delighted to be able to extend our SONYMA mortgages to parents coping with serving the needs of their children with developmental disabilities or mental illness,” said Priscilla Almodovar, President and Chief Executive Officer of SONYMA.

“Recovery from mental illness without stable, decent and affordable housing is almost impossible,” said Mike Hogan, Ph.D., Commissioner of OMH. “The Home of Your Own program has already been a great housing and recovery resource for people with a mental illness. We know that many individuals with mental illness live with family, and this expansion of the Home of Your Own program will assist even more New Yorkers when it comes to financing a home.”

For more information on how to apply for the Home of Your Own Program, contact Lucinda Grant-Griffin, director of the HOYO program at OMRDD, at (518) 473-1973 or contact OMH at (518) 474-5191.


Winter 2007-08
Issue No. 89