AccessAbility

Maria Dibble

About five years ago, at the urging of our service coordinators, STIC brought together a coalition of providers, parents and others to discuss the need for services for children with co-occurring mental health and developmental disabilities. The response was immediate and remarkable, and the Broome County Children’s Mental Health Task Force was born.

On February 6, 2008, the Task Force members decided that there was no longer a need for the group to meet. We have seen progress in most if not all areas of our priorities. We’ve raised awareness of how serious these concerns are to our community, and now many groups, locally, regionally and statewide are addressing the issues as well. Perhaps most exciting of all, the Governor and the Commissioners of OMH, OMRDD, and other state agencies have identified the critical need for all of the systems to work more closely together to serve people with a wide variety of multiple, co-occurring disabilities.

Here is a summary of the Task Force’s history and successes:

After trying on our own to compile a list of existing programs, new services needed, the numbers of children affected, gaps in services, etc. we realized that we needed the assistance of a consultant experienced in conducting needs assessments before we could tackle the myriad questions and problems confronting us. We contacted Broome County Commissioner of Mental Health Art Johnson and he agreed to fund a study. The Center on Government Research was contracted to assist us in developing a needs assessment to quantify the need, identify issues, recommend best practices, and help the task force to prioritize the results, as well as the strategies to be undertaken to achieve change.

Surveys of Medicaid Service Coordinators, families, providers, and schools were conducted and the findings analyzed and compiled. As a result of the 90+ page report, Commissioner Johnson had enough data to justify implementing several new initiatives. The Task Force was also able to facilitate and increase cooperation between the local OMRDD and OMH entities, which was one of the key barriers identified in the report.

The success of the Task Force is evident in the number of new initiatives that have been implemented as well as several in the planning stages. They include:

1. The Task Force was responsible for the development of various training modules for “cross systems” training. Some of these were pre-existing training curricula available through Broome Developmental Center. Other training modules, most of which are PowerPoint presentations, were added and focused on topics pertinent to youth with co-occurring disorders of mental health and developmental disabilities. There is a “catalogue” of 13 different training modules currently available which agencies and community groups can request.
2. In May 2007 the first cross-systems training was held and attended by close to 80 people. It was extremely well-received. Another is being planned for late this spring.
3. As a result of the Task Force’s efforts, both Single Point of Accountability (SPOA) and the Coordinated Children’s Services Initiative (CCSI) have opened their admissions to children with developmental disabilities and mental retardation.
4. There’s a new diagnostic service (Youth Evaluation Program) at BC Mental Health to evaluate children with suspected co-occurring MRDD and MH issues
5. The Task Force was an impetus for the Children’s Home of Wyoming Conference to apply for and obtain a license through OMRDD. They are developing a range of services to offer to this population.
6. Broome DDSO and the Greater Binghamton Health Center (GBHC) have collaborated on a landmark proposal to create two 6-bed residences on the GBHC campus for people with developmental disabilities (one for youth and one for adults) to provide short-term crisis mental health treatment. They will serve a 6-county area.
7. Achieve (formerly Broome-Tioga ARC) is working on a proposal for emergency respite for people in their residential programs who are in crisis. It will have a mental health component, and once implemented will reduce the number of visits to CPEP, relieving stress on that overworked entity.
8. The Broome DDSO hired a psychiatrist, increasing services to consumers of the OMRDD system.
9. The Broome DDSO has developed a cooperative relationship to provide psychological consultations to people with developmental disabilities seeking emergency mental health services from CPEP.
10. Two Fellows from Upstate Medical Center will be coming to our area to finish their fellowships through GBHC. Typically, Fellows remain in the community for at least a few years after completing their fellowships, and if so, this would make available two more much-needed trained professionals experienced in working with people with co-occurring conditions of MH and DD.
11. Binghamton University has added a training component for already licensed Nurse Practitioners, allowing them to pursue a psychiatric specialization. Once the University has obtained all of the necessary accreditations, they will offer a full program for psychiatric nurse practitioners.
12. Commissioner Art Johnson is involved in a statewide initiative to increase psychiatric services for children, called the STEPS campaign. He has discussed the work of our task force, brought the issues we’ve identified to this larger group, and remains a very strong advocate for children and adults with co-occurring mental health and developmental (as well as other) disabilities.

Clearly, the Task Force has brought the needs of these consumers and their families to the forefront, has educated providers and others about their issues and concerns, and has resulted in concrete and measurable results. And there are still new services in various stages of development and implementation and the training and mutual sharing will continue long after this task force has been disbanded.

To all of the members of the Task Force, and especially to Commissioner Johnson, I’d like to extend my deepest thanks for all the work that has gone on over the last five years, as well as for the work I know will be done in the future. Our voices have been raised and heard, and they are now echoing around the state. This has been an outstanding example of the whole being much greater than the sum of its parts. Our community can take pride in our achievements, as well as our success in putting differences aside for the greater good. Hopefully, this will serve as a role model for other coalitions in the future. Together, we have truly been a force for change.

by Frank Pennisi

It’s time for the latest episode of the New York State Voting Machine Follies of the 21st Century! The Help America Vote Act (HAVA) of 2002 required that all states replace their antiquated voting systems with new machines that would be accessible to people with disabilities by the primary elections of 2006. New York State, never one to concern itself with deadlines, naturally did not comply. This led to a lawsuit filed against the state by the US Department of Justice.

The state submitted a few plans to the Court with timelines for when it would have new accessible machines, and, of course, failed to meet its own deadlines. Finally, in December, the federal judge had had enough of the State Board’s shenanigans, and ordered them to come up with a workable plan by January 4, 2008 or face possible jail time. At the eleventh hour, the State did indeed submit a plan and the judge accepted it.

A bit of backtracking: almost two years ago, the State Board approved 3 machines to be used by people with disabilities on a temporary basis until the new machines were decided on. These were the ES&S Automark and the Avante, both very good machines that were about 95% accessible, and the Populex. Most counties bought one machine and put it in a central location for people with disabilities to use. Broome County had the Automark, while Chenango and Tioga Counties had the Avante. These machines have been used for the last two years.

The new plan submitted on January 4 said that the state would certify machines for people with disabilities to be placed in every polling place by the November elections. All lever machines would be replaced by the 2009 primary elections. The Court agreed to this plan and said that counties had to decide which machines to purchase and order them by February 8. Counties couldn’t do this for the next three weeks, however, because it took the state that long to certify which machines the counties could choose from.

Finally, on January 25, the state certified three machines: the ES&S Automark, the Premier (a new machine), and the Sequoia Imagecast, another new machine. Counties now had two weeks to make their choice and order their machines. The Avante, after being used by a majority of counties across the state, was inexplicably not certified. The two new machines were unfamiliar to and have not been tested by disability advocates so their level of accessibility is unknown.

A few days later, on January 31, the State suddenly decertified the ES&S Automark and the Premier, leaving the Sequoia Imagecast as the only choice. At this point, most, if not all, of the counties in the State ordered this machine. Ironically, counties have been begging the State to choose one machine for the whole state, but the State Board has steadfastly refused to do so.

On February 7, the State extended the deadline to February 12, and recertified the two decertified machines and two others, but it was a moot point by this time, as counties had already ordered the Sequoia Imagecast. Although we’ve heard some good things about this machine, it has not been tested by people with disabilities and so its level of accessibility is currently unknown. This would be worrisome given the State Board’s complete lack of interest in machine accessibility or any input from the disability community over the last five years, but Sequoia’s touch screen machine was almost totally accessible and the company has been very receptive to ideas from people with disabilities, so we are hoping that this machine will indeed be accessible and usable. What will the State Board of Elections, that most dysfunctional of all groups, do next? Your guess is as good as mine. Stay tuned.

New York State's Most Integrated Setting Coordinating Council (MISCC) exists to create a plan to ensure that people with all disabilities who need services from the state can receive them in the most integrated setting possible. Its January meeting featured much more detail on plans and progress than last fall's event. In October, MISCC Chairperson (and OMRDD Commissioner) Diana Jones-Ritter said she would revive the "Inter-Office Coordinating Council" (IOCC). We were worried that this might hide major agency reform issues from the public eye. We now know that like MISCC meetings, the IOCC’s quarterly meetings will be webcast. We'll summarize each meeting separately.

January MISCC Meeting

The meeting featured presentations from two top Spitzer aides, updates from member agencies on "stakeholders", and presentations from Department of Health (DOH) Long-Term Care Director Mark Kissinger and the MISCC's Transportation Task Force. There was also discussion of the Housing Task Force.

Deputy Secretary for Health and Human Services Dennis Whalen, a very high-ranking Spitzer official, and his Assistant, Joe Baker, gave an overview of Spitzer’s disability-related budget proposals (see Spitzer's Budget: Magically Delicious?). Whalen said the state agencies had, “in the spirit” of last year’s People First public forums, collaborated on their budget proposals to prevent overlap and begin to address issues those forums raised, and added that the Spitzer Administration understands and welcomes “pushy” advocates in the disability and health care arenas.

All member agencies now have “stakeholder” groups working on MISCC planning and result monitoring. Usually “advisory” groups get limited access to information, often only after decisions are made. For example, VESID’s Special Education, Vocational Rehabilitation, and Independent Living Advisory Councils have operated this way, and Deputy Commissioner Rebecca Cort’s presentation did not indicate any changes. OMH’s John Allen said their multiple groups were asked to focus on MISCC priorities as well as internal review of hospitals and community placements for maximum integration. They got feedback emphasizing need for housing, jobs, and integration. State Office for the Aging (SOFA) Director Mike Burgess said they have pulled people from upstate and downstate long-term care councils to create a group that includes six advocates for seniors, one senior recipient, one senior caregiver, and Independent Living and ADAPT activist Bruce Darling. The group got training on ADA, the Olmstead decision, and SOFA programs, and a work plan to evaluate SOFA’s responses to MISCC; it meets at least quarterly. David Liscomb, president of the Self-Advocacy Association of NYS (SANYS), SANYS director Steve Holmes, and an OMRDD official described SANYS’s role as OMRDD’s stakeholder group. The “self-advocates” are working not just with OMRDD top executives but with the “worker bees” throughout the agency. Perhaps the paternalism that characterized the SANYS/OMRDD relationship under Tom Maul will change under Ritter.

Mark Kissinger delivered an overview of the long-term care situation and DOH’s plans to address it. While Spitzer officials have said this year’s focus is on short-term acute care, there has been a lot of activity on the long-term care side.

We aren’t sure if the huge network of residential and day programs and services funded by OMRDD was included in all the DOH data. No real “long-term care reform”, or cost efficiencies, can be achieved without putting OMRDD on the table. It seems likely that DOH’s annual state spending figure of “nearly $8 billion for ... home and community based programs and services” (as opposed to over $6 billion for nursing homes) did include OMRDD-funded facilities. This falsely implies that integrated programs get more money than segregated ones. Almost none of the people who live in group homes have any community interaction. They are simply small segregated institutions. Here are two much more important figures from DOH: the average cost per service recipient is “$44,083 for institutional care and $21,653 for non-institutional care (about 51% less).”

Kissinger noted that a “lack of coordination among and transition between the informal, non-medical and medical systems is a major barrier to achieving efficiency,” and that “there is a lack of consistency in how, when and where people with similar levels of needs are served.” He said NY has a 5-10 year “window” in which to fix these problems before demand for services (by the Baby Boomers) begins to rise dramatically.

DOH’s long-term care action plan includes the following items. We have no information on many of these items. Background is provided on items we do know about.


Poor discharge planning by hospitals is a big reason why people end up in nursing homes instead of back in their own homes after a serious illness or injury.

The MISCC Transportation Task Force has been meeting every three weeks. Serious barriers to improved transportation for people with disabilities exist, including inflexible federal Medicaid transportation regulations, SOFA limits on sharing resources, and Department of Transportation (DOT) safety regs. DOT funding is only available for public services or municipalities. Taxis are regulated locally; the state has no power to require accessible cabs. The Task Force plans to present legislative proposals to address some of these issues later in the year. Meanwhile, they cited these accomplishments:

DOT now requires not-for-profits applying for federal “5310 program” bus funds to take part in a local plan to coordinate use of those buses. DOT is offering disability sensitivity training to transportation authorities. Pilot programs to pool public transportation, paratransit, taxi and not-for-profit van resources have been started in Erie, Sullivan, and Essex Counties. DOT has federal “United We Ride” grant funds, and is working with the feds on projects to improve software that enhances paratransit dispatch response times.

Advocates were still concerned about the Housing Task Force’s emphasis on supported housing. “Supported housing” means a residential unit “bundled” with support services. People with developmental disabilities can already get this through OMRDD, and while some people with mental disabilities may want it, most with physical disabilities, including those coming out of nursing homes on the new NHTD waiver, do not. An “Article 7 legislation” proposal was mentioned; this would remove legal barriers to different state agencies collaborating on affordable supported housing projects. Department of Housing and Community Renewal (DHCR) Commissioner Deb VanAmerongen said DHCR’s “Qualified Allocation Plan”, which governs use of housing development money, includes both “supportive” and accessible housing. She also said she is open to having Independent Living representatives on Spitzer’s proposed Housing Opportunity Fund advisory board (see Spitzer's Budget: Magically Delicious?). In February folks in Spitzer’s office met with IL advocates and may have gotten the message about ensuring that supported housing will not be overemphasized.

During the public comment period speakers urged a focus on eliminating abuse and intimidation of adult “home” residents by facility operators. There was also a concern that despite Spitzer’s proposals for adult “home” buy-outs and more housing, people actually living in these facilities today may not directly benefit. Another speaker said it would be nice if the MISCC would take public comment earlier in the meeting, before most of the Commissioners leave.

Ritter concluded by listing action points to resolve by the next meeting. She said she is working with the Governor on replacing inactive MISCC members. She also noted that the MISCC Employment Task Force has been formed with VESID’s Ed Placke chairing. (Advocates are concerned that Independent Living experts on the Task Force's focus on ending sheltered employment were not appointed to the group, while people with little or no particular employment knowledge were.) Referring to the Transportation Task Force’s report, she invited the other task forces and agency representatives to include legislative proposals in their plans-something that STIC has called for strongly in these pages. She also said she would try to get clarification on the supported housing issue and on plans for adult “homes”, and would look at addressing public comment earlier in the meetings.

January IOCC Meeting

The revived IOCC held its first meeting in January. Office of Alcohol and Substance Abuse Services Commissioner Karen Carpenter-Palumbo is its chair; other mandated members include Ritter and OMH Commissioner Mike Hogan. Ad-hoc members DOH Commissioner Daines, State Education Department Commissioner Mills, and the Commissioners of the Office of Child and Family Services and the Developmental Disabilities Planning Council were appointed but did not seem to be present. A representative from a statewide association of county mental hygiene agencies was there.

The meeting focused on addressing the dual-diagnosis issues raised at last year's People First public forums. The IOCC's goal is to “eliminate existing structural, and fiscal and regulatory barriers to access of” coordinated services among the represented agencies.

The IOCC has two committees. The Mental Hygiene Planning Committee will be co-chaired by Carpenter-Palumbo and a representative from the county mental hygiene agencies. This committee has made progress in creating a single local planning process for the three member agencies and on ensuring better communication between the local boards and the state agencies. The Program Committee includes all three mandated commissioners plus senior state agency staff, and will look at regulatory issues.

OMRDD Deputy for Policy and Planning Gary Lind - who years ago oversaw that agency's flawed Self Determination initiative - reported that a video conference among all of the OMRDD DDSO directors and OMH regional directors took place in November, and there have been more meetings since. Lind said a new ethic of “shared ownership” of issues, and collaboration to find solutions, has replaced the old “finger pointing” that we have so often seen. “Most” regions have two work groups. One tries to solve individual problems, sometimes by bringing in other service systems such as DSS or schools; the other looks at systemic policy and training issues, and tries to identify best practices.

Much more detail was reported on OASAS/OMH collaboration. Specific goals were stated: People with either diagnosis should be able to get services at facilities funded by either agency; “any door is the right door.” There should be one common evaluation for both agencies. Consumers should be able to learn they have co-occurring conditions, collaborate in designing treatment, and get “evidence-based” or “consensus-based” treatment. (These are code-words for emphasizing drugs, which many people with mental disabilities don’t support.) The plan is to deliver the following items by July 2008: Best practices will be featured in training and technical assistance from both agencies. OMH and OASAS providers should be able to provide limited amounts of the other’s services under a single certification. Some type of standardized screening and assessment should be available, and progress on setting common evaluation standards should be made.

The MISCC and IOCC webcasts were not available on the MISCC site in February. However, both OMRDD and OMH maintain archives of past webcasts at these locations:

OMRDD: www.omr.state.ny.us/hp_webcasts.jsp

OMH: www.omh.state.ny.us/omhweb/webcasts/archived.html

More information, emphasizing regulatory and systems change, appears in the report on the People First forums issued by OMRDD, OMH, OASAS, and DOH. The report is at: www.health.state.ny.us/events/listening_forums/docs/report_2007-10-24

We were impressed by the amount of work being planned and done by the MISCC and IOCC. While this is by no means a perfect process, it appears that a serious effort is being made to address criticisms and questions as they arise. We’ll keep you informed.

In January, the Centers for Medicare and Medicaid Services (CMS) said they would cut federal Money Follows the Person (MFP) case management reimbursement for transitioning people from institutions to the community. CMS cut the funding from the current 180 days to only 60 days if the person was institutionalized for six months or more, and 14 days for people institutionalized for less than six months.

Case management is needed to assist people leaving nursing homes to find housing, make it accessible, and arrange for in-home services such as homecare, and for other supports. This can take much longer than 60 days, due to slow bureaucratic procedures and the difficulties of finding affordable housing, especially in larger urban areas. CMS claims nursing homes are already paid to do this as part of discharge planning. In fact, nursing home discharge planners don’t know how to do this. That’s why Congress specifically included transition case management in the MFP program. CMS’s action undercuts states’ efforts to comply with the Olmstead decision, implement MFP demonstration programs and support people transitioning into the community.

In February bills were introduced in both houses of Congress to stop this move by CMS. The House bill, HR 5173, is currently in the Committee on Energy and Commerce. The Senate version, S. 2578, is being considered by the Senate Finance Committee.

The parents of five NY children sued the Bush Administration in January over CMS’s use of an arbitrary rules change to reject Spitzer’s plan to provide health insurance to children in moderate-income families through the State Children’s Health Insurance Program (SCHIP). This is the first case that represents actual children affected by the new rules. NY, MD, IL, WA and NJ sued last October. The families say that CMS’s decision to reject NY’s plan is based on unlawfully adopted rules that are inconsistent with the federal SCHIP law and violate the Administrative Procedures Act, which requires the feds to adopt new rules only after public notice and comment. The families are represented by two NYS public interest groups, the Community Service Society in New York City and the Empire Justice Center in upstate NY, as well as two national law offices, the National Health Law Program and the Center for Medicare Advocacy.

On Christmas Day the New York Times reported that 40 parents of NY children placed at the notorious Judge Rotenburg School in Massachusetts got an injunction against NY’s new regulations governing “aversive treatment” in schools, and were pursuing a lawsuit.

The article incorrectly reported that the state had “banned” the use of electric shock on NY students at the school. In fact, the regulations explicitly permit use of electric shock on any student, if the school has specific procedures and policies in place and a formal behavioral plan, for three years. After three years, no new students can be so “treated” but any students for whom shock was already approved could get the “treatment” for the rest of their school years.

The article quoted professionals who said that the value of electric shock as a punishment has never been proven and that effective and humane methods to address serious self-injurious and aggressive behavior are available. But the focus was on the “plight” of families whose incompetent home school districts had failed to provide proper supports and who had been convinced by Rotenburg marketers that they had no choice.

The article did not say if the injunction applied only to the Rotenburg School or to New York’s new regulations as a whole. It appears the injunction is temporary, with the issue to be decided by a court in 2008.

A bill to require most people with mental illnesses in NY’s state prisons to get mental health treatment instead of solitary confinement in “Special Housing Units” (SHUs) was supposed to have been passed and signed in 2007. An agreement between Governor Spitzer, Senate Majority Leader Bruno, and Assembly Speaker Silver was reached last summer after initial resistance by Spitzer. The bill passed the Senate, but for unknown reasons, Silver did not let it pass the Assembly. We understand there is agreement to pass and sign a bill this year.

by Maria Dibble

2008 marks Southern Tier Independence Center’s 25th. anniversary and it will be another memorable year for STIC staff, Board and consumers.

Looming largest in our sights is our move to our new quarters. Yes, it is truly finally happening! We purchased a building at 135-137 East Frederick Street in Binghamton five years ago, anticipating the construction of Broome County’s Intermodal Transportation Hub. After many many delays, their project is ready to go, so we can sell our 24 Prospect Avenue property to the county and have the funds to proceed with the $2.3 million renovations of our new office space.

If all goes as planned, construction will have begun at our new facility by the time you are reading this. We hope to be moved by early fall. More updates will be reported as the year progresses.

On June 27 I will have been here 25 years, and in August Frank Pennisi will be as well. There are many others who have been with us from ten to twenty years or more, and many more in the five-to-ten-year range. We are fortunate to attract and retain such outstanding employees, who have a deep commitment to our mission, philosophy and values. We also fervently hope that the relative newcomers of under five years will be with us when we celebrate our 30th., 35th. and beyond.

In this time we have seen many changes in our community, in attitudes toward disability in general and the laws, regulations and policies that govern disability services.

The Americans with Disabilities Act passed in 1990, and STIC was involved in every proposed version, regulation and debate along the way.

Every Broome Transit bus now has a wheelchair lift; we have a well functioning TTY relay service; CDPA legislation was passed (and subsequently our program began); the TBI and NHTD waivers were adopted and implemented statewide, and so much more. STIC was actively and passionately involved with all of these changes, as well as hundreds of others.

We began as an organization with one grant of $100,000 from the NY State Education Department in 1983, with 3.5 staff positions. We now have 30+ contracts and funding sources, 250+ employees, and revenues in the millions.

Throughout the year we will be celebrating in these pages our victories, our growth and our steadfast adherence to the ideals of the Independent Living philosophy. When we finally move, we will have an open house to introduce our new building to the community, as well as activities yet to be determined to celebrate our silver anniversary. For those of you who have been with us on our journey from the early years, I invite you to send me your reflections and memories. We will try to publish as many as possible in our newsletter. If enough people write in, perhaps we’ll have enough to put together a scrapbook. You can email me at mdibble@stic-cil.org or write to me at 24 Prospect Avenue, Binghamton, NY 13901. Email works best for me if you have access. Send Word or text files please.

by Christine Delany

In January, the New York State Education Department issued a memo stating that public school districts may not provide special education services to students who are home-schooled. This is the result of a State Review Officer’s finding (upheld on appeal by the State Education Commissioner) that changes to the Individuals with Disabilities Education Act (IDEA) in 2004 mandated that school districts can only provide special education services to home-schooled children if home schools are recognized as “private schools” under state law. Home schools are not explicitly recognized by New York State Education Law as “private schools”, and therefore provision of services is not authorized under IDEA or NYS law.

School districts are still required to evaluate home-schooled students and develop an Individual Education Plan (IEP) if appropriate. This, according to the memo, fulfills the district’s responsibility to “offer a free appropriate public education (FAPE) to the student if the parents choose to enroll their child in a public school” (emphasis added). The memo indicates that if a parent chooses to home-school their disabled child, they can choose how to implement the IEP developed by the Committee on Special Education (CSE). The question for many parents who choose to home-school is how do they implement support services that are in their child’s IEP. For instance, if the CSE determines that the child needs (and would receive if attending school) speech therapy 3 times a week, how are parents to provide this service for their child practically and financially? Parents who have tried to access these services through their insurance have been denied in the past because “the school district should be providing that service”. Will insurance companies now be required to pay for the service since the school district is now forbidden to provide it?

Another significant concern is that this memo is effective immediately; halfway through the school year, parents who home-school are now faced with the choice between enrolling their disabled child in school or losing all the services their child currently receives. Many disabled students have difficulty with transitions. It is arguably a huge adjustment for any student to enter a new school setting midway through the year; it will be even more difficult for many students with disabilities to make that adjustment.

To be clear, students who are enrolled in legally recognized private schools will still receive special education services. Also, some students who, for medical reasons cannot attend public school, receive Home Instruction. Students who attend public school and are placed on Home Instruction by the school district will still receive services. While people’s views about home schooling may differ, it does seem inconsistent that while a school district can determine that Home Instruction is the “most appropriate placement” for a particular student under certain circumstances, we are now being told that home is not a “recognized” form of school. Is this fair?

Hopefully, this is not the end of this story. This decision is being appealed in federal District Court. I would encourage parents who home-school to look into their options for challenging this ruling. I would also encourage them to still work with their district to develop an appropriate IEP. Having a good IEP may open doors for services to be provided in some other way, and will ensure that if parents choose to send their child to school, the child will have the supports and services he or she needs to be successful.