$4.8 billion is not peanuts, of course, so this year’s budget isn’t as disability-friendly as last year’s. The most significant problems are:
The Governor wants to cut the annual cost-of-living adjustment (COLA) for homecare providers by 35% while maintaining the COLA for segregated programs funded by OMRDD and OMH. Spitzer’s people say everybody has to suffer some pain with such a big deficit, but those programs are not being asked to suffer this pain, and this is contrary to the spirit of Spitzer’s goal of moving the state away from segregation and towards integration. The final budget should restore the full COLA to integrated community-based programs and pay for it by cutting the rate of increase for segregated programs.
A “Personal Care Demonstration Project” would be set up in New York City, with a third party doing needs assessments and authorizing services for people using Level I Personal Care. Although Spitzer officials say this is just “data collection”—to learn why Personal Care is used at higher rates in NYC—they also expect it to save $6 million. High NYC Personal Care usage has been debated for decades, unhindered by any reliable analysis of the facts. Advocates say the numbers seem high only because they are compared to much lower numbers from wealthy neighboring suburban counties, and because the city has a lot of accessible housing and transportation, and therefore a higher concentration of people with disabilities. State officials hint darkly at fraud.
So “data collection” is a good idea. But it should not save money, and advocates fear that this is a roundabout way to cut people off Personal Care after last year’s direct attempt was beaten back.
Spitzer plans to apply spousal budgeting restrictions governing the new Nursing Home Transition and Diversion (NHTD) Medicaid waiver to the Long Term Home Health Care (LTHHC or “Lombardi”) and Traumatic Brain Injury (TBI) waivers. The federal Centers for Medicare and Medicaid (CMS) forced those limits on the state last year as a condition of NHTD waiver approval. Since those waivers are up for federal renewal, CMS wants to force this on them as well. Last year as the NHTD issue was being debated, advocates were led to believe that Spitzer would stand up to CMS. He had no problem suing them over arbitrary and illegal changes to the SCHIP program regulations. CMS’s spousal budgeting changes are just as arbitrary and illegal; he should sue them for this as well.
A really ugly move involves excluding people using Medicaid State Plan or Waiver long-term care services from the guaranteed 12 months of Medicaid coverage being extended to others. The 12-months-service idea addresses the fact that some people’s Medicaid eligibility changes rapidly, because they have seasonal jobs, miss a spend-down, or the local DSS screws up their paperwork. People who use long-term care have these problems just like other Medicaid recipients. Many also have intellectual or cognitive disabilities, and a lot more paperwork to maintain eligibility. They or their service providers can file late or make mistakes, causing them to lose coverage. It is unfair to make them reapply—and wait months—for it to be restored. This is unacceptable.
Spitzer is forcing more people with disabilities who get SSI into Medicaid managed care, this time by narrowing the definition of “serious and persistent mental illness” (SPMI). We think this means cutting the number of people with SPMI who can use the State Plan Medicaid services that were “carved out” of managed care last year for this group; people with SPMI as a class lost their exemption from mandatory Medicaid managed care last year for services not specific to mental illness. One source said the state will “expedite” forced enrollment of upstate people with mental illness or severe emotional disturbance this year, but we don’t know what that means. Spitzer would also let DOH force “dual eligibles” (people who are eligible for both Medicaid and Medicare) who are in a Medicare Advantage (managed care) plan into Medicaid managed care.
The Governor want to change how Medicaid handles anti-depressant drugs. One source says he wants them on the Preferred Drug List (PDL). Another says only that they will no longer be exempt from prior approval requirements. The PDL lists drugs that Medicaid will pay for automatically. Spitzer is keeping the “physician has the last say” rule for all prescriptions. That is, whether or not a drug is on the PDL and/or prior authorization is denied, if the doctor insists that it is medically necessary, Medicaid will pay for it.
Spitzer plans to cut state funding for Centers for Independent Living (CILs) like STIC back to 2006 levels. That’s a $1.5 million total cut across some 35 Centers. According to the State Education Department, demand for CIL services has grown by 27% since 2000, while state funding has increased by only 11%.
There are several ideas to address NY’s chronic shortage of affordable accessible housing:
Spitzer called for a $400 million “Housing Opportunity Fund” that would put new money into several existing state programs that provide affordable housing. The fund would be overseen by SONYMA, with an advisory board of officials from most of the state’s disability service agencies. Advocates have urged that all housing created by the Fund be accessible to people with disabilities and that CIL representatives be on the advisory board to ensure that the needs of people with physical disabilities are understood.
The Governor wants to let state housing agencies give funds to providers of “supportive housing”—that is, housing with services, such as aides, training or counseling, attached. This could benefit more people with mental or intellectual disabilities, but such programs already exist for many people with those disabilities, especially at OMRDD. With the new NHTD waiver, the greatest need is for accessible affordable housing without services. Many people with physical disabilities aren’t eligible for supported living programs, so bundling those services with accessible units would freeze them out.
Spitzer is continuing to expand housing for people with mental illness. He wants 1,500 new supported housing “beds” and 500 new “single-room-occupancy” apartments, and plans to spend $20 million to buy adult “homes” (large institutions with 300 “beds” or more, mostly in New York City) and convert them to OMH housing. This housing is needed but most of it is segregated, which is not good.
The Governor has requested another $2.5 million for the NHTD waiver housing subsidy. None of the $2.5 million approved last year was spent because the program has yet to get off the ground, so this would make the total available $5 million.
Spitzer wants to expand the State Office for Aging’s EISEP program, which provides home modifications that enable seniors with disabilities to stay in their own homes.
As part of his drive toward universal health coverage, Spitzer wants to increase income eligibility for Child Health Plus, which insures children of the working poor, to 400% of the poverty level using state-only dollars. He tried to do this last year through the federal State Children’s Health Insurance Program (SCHIP), but CMS illegally restricted state expansion of SCHIP-funded programs. Spitzer and several states sued CMS, but that won’t be resolved before Bush leaves office. Spitzer won’t need federal approval to use state money, but it’s a huge chunk of new spending for the state budget, even though the plan’s sliding fee scale has the highest-earning families paying up to $225 per month.
The Governor wants a statewide enrollment portal for all public health programs. Initially this would provide a telephone hotline, and enrollment services for special populations in some areas of the state. Over several years, it would become an online program where people could apply and get recertified. Disability advocates are cautiously optimistic about this idea, which could stop counties from misleading people about, and denying, available services. He also wants to expand the “facilitated enrollment” program that funds local agencies to assist people to learn about and apply for public health insurance options. Different sources report different budget amounts for this. To the extent that it helps people find and use the statewide portal, it’s a good idea.
Spitzer is proposing several changes that will simplify and streamline Medicaid eligibility determinations and re-approvals. These include (thanks to Medicaid Matters New York):
Eliminating the asset test for those eligible for the Medicare Savings Program, which controls whether low-income Medicare recipients can use Medicaid to pay for Medicare premiums and co-pays (if the feds agree). Making resource limits the same for Medicaid and Family Health Plus. Dropping drug and alcohol screening for single adults seeking Medicaid. Letting DOH use state income tax returns to verify income. Aligning Medicaid eligibility levels for single adults and childless couples, and eliminating varying county-by-county “standards of need” for low-income families. Expanding Medicaid coverage for children formerly in foster care from age 18 to age 21. Eliminating the need to reapply for Medicaid or Family Health Plus when moving from one county to another. This last item was actually the result of a lawsuit that we reported on last time.
Spitzer proposed several complex measures to gradually shift Medicaid acute care funds toward providers who serve the most Medicaid recipients, and to “ambulatory” and outpatient services. The Governor wants to increase Medicaid reimbursement for doctor fees to 75% of what Medicare pays. Low fees have limited availability of medical service to poor people for decades. He’s also introducing a “Doctors Across NY” program of incentives to encourage doctors to live and work in areas where they are scarce.
There are several positive medication-related items in the Governor’s budget proposal:
Medicaid co-pays for brand-name drugs on the PDL would be cut from $3 to $1. The “wrap-around” program, for Medicaid coverage of some drugs for which Medicare Part D plans for “dual eligibles” won’t pay, will be continued. Pharmacy services would be removed from Family Health Plus; participants would get drugs from the Medicaid State Plan instead, so the state can buy them at lower bulk rates. Discount cards, providing a discount of between 15% and 25% off drug purchases, would be offered to people of any age who meet the NY EPIC (Elderly Pharmaceutical Insurance Coverage) program’s income eligibility rules. Advocates have long called for adding people with disabilities under age 65 to EPIC. This is a good step in that direction.
Spitzer wants to balance costs between drug companies and pharmacies by increasing dispensing fees for pharmacies while cutting prices the state pays for drugs to get them closer to the actual wholesale rate; creating a Medicaid “special pharmacy program” to buy high-cost drugs, such as those for chemotherapy and hydration therapy, and IV antibiotics, at lower rates; and authorizing NY to form bulk-purchasing consortiums with other states to get lower drug prices.
Spitzer will restore SSI “invisibility” for low-income households receiving an AIDS rent enhancement as well as TANF (welfare) assistance. Pataki had cut welfare benefits for families with children who get SSI. Although a court said this was illegal, Pataki refused to restore those benefits.
The Governor wants more funding for Division of Human Rights enforcement of provisions requiring accessibility in public accommodations that were added to the NYS Human Rights law last year.
OMRDD Commissioner Diana Jones-Ritter announced a multi-year plan to downsize and close all of NY’s Developmental Centers over several years, starting with closing the West Seneca Developmental Center over three years. At the January MISCC meeting (see MISCC Goes Brisk) Ritter and NYS Deputy Secretary for Health and Human Services Dennis Whalen, indicated that this will eventually get about 500 people out of the centers, including some in so-called “forensic” or “intensive locked treatment” units.
So how does Spitzer plan to pay for all this? It’s really not magic, of course. He hopes the Legislature will approve some whopping “one-shot” revenue “enhancements” to make the budget balance. These include selling the NYS Lottery, and some very valuable land in New York City, to private businesses, and allowing yet another not-for-profit health insurance provider to go for-profit (thereby forcing it to return a huge chunk of assets to the state). He also wants hefty tax increases (called “assessments” and other euphemisms) on HMOs and health insurance companies, and reimbursement rate cuts for hospitals. And he wants to transfer some social service program costs to local governments.
At this writing, the Legislature’s response to all this has been somewhat muted. There is likely to be trouble with the Republican Senate over the Governor’s refusal to extend or expand property tax rebates, the “one-shots”, new taxes on the health industry, and the cost-shifting to local governments. Assembly Speaker Silver was cautiously supportive but did not fully endorse Spitzer’s plans. The budget deadline is April 1. There has been little speculation about whether that deadline will be met. Stay tuned.
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.
The Commission recommended closures, mergers, and downsizings for hospitals and nursing homes last year. STIC had some issues with the plan, especially its proposal to replace many segregated restrictive nursing home beds with (sometimes) less restrictive, but still segregated, “assisted living” beds.
The Pataki Administration started this project. Its main idea was a managed care “mega-waiver” that disability advocates strongly opposed. Spitzer’s people have given mixed messages on whether the “mega-waiver” is still on the table. We recently heard that some DOH officials now understand that federal Medicaid reforms enacted in 2006 would let NY offer home and community-based services through the Medicaid State Plan without a waiver. But Spitzer is aggressively pursuing expansion of Medicaid managed care, including long-term care, for people with disabilities. Managed care has a bad history for people with disabilities, does not necessarily save money, and should be stopped.
SOFA was to create a “single point of entry” in each county for Medicaid long-term care services. They are letting county government run these offices (if the county cooperates; some are not), which currently only provide information and referral services. Advocates oppose this because counties often violate federal and state Medicaid laws, which require uniform availability of services statewide, to control costs. This item may conflict with Spitzer’s budget proposal for an electronic statewide “portal”. A point of entry that doesn’t let counties block access to services is the only way DOH can address the “lack of consistency in how, when and where people with similar levels of needs are served.”
Assisted living can be a less unpleasant form of segregated residential placement, but it is not always less restrictive and it is always segregated. NY should focus on enabling people with disabilities, including those who are elderly, to keep their own homes.
The Nursing Home Transition and Diversion (NHTD) waiver is slowly getting started. STIC runs two of its Regional Resource Development Centers (RRDCs). Start-up has been hampered by DOH micro-management, most recently by developing standardized procedural documents and forms from scratch, instead of adapting those already used by the TBI Waiver. We hope these bureaucratic snafus are nearing an end.
“Money Follows the Person” (MFP) is a federal grant that gives states Medicaid funds to assist people to leave nursing homes, including money for counseling, training, and household start-up. DOH had told Independent Living representatives that some of this money would go to CILs to do outreach and provide hands-on assistance for transition. Apparently that’s not what they told the feds. As we understand it now, DOH is offering competitive grants to any local agency (STIC is applying).
We don’t know what the “SSI Study” is.
Palliative care means medical services, including pain management, for people with terminal illnesses. This is an issue for the disability community because good palliative care and aggressive pain management reduce the clamor for assistive suicide.
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.
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.
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.
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:
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.
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.
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.
In December 2005 DOH applied to the Federal Centers for Medicaid and Medicare Services (CMS) for approval to develop a 1915 Medicaid Home and Community-Based Services (HCBS) waiver, known as the Nursing Home Transition and Diversion (NHTD) waiver. The waiver was to assist people with disabilities who are 18 years and older who would otherwise be placed in a nursing home to live in the most integrated setting. Approval was granted, though not all details of the waiver were settled with CMS immediately.
DOH then sent out a Request for Applications (RFA) to identify non-profit agencies that would contract to set up Regional Resource Development Centers (RRDCs) throughout New York to administer the new waiver program on a local level. In April 2006 STIC applied for the RRDC in the Binghamton-Southern Tier region.
STIC has a long history of advocating for and serving people with disabilities in our region. We have worked with countless people who wished to terminate or avoid institutionalization so they could be free to live independently in their communities and pursue their goals and dreams. STIC has operated an RRDC for the Traumatic Brain Injury waiver program since April 2002. We also have a history of providing OMRDD waiver services. STIC’s Community Integration Advocates are solely dedicated to assisting people who wish to transition back to the community from institutions. Running these programs and providing these services has given our staff in-depth knowledge of what is necessary to support people with disabilities in the community. We also have a working knowledge of what resources and services are available locally. STIC was therefor uniquely qualified to run an RRDC under this new waiver program. We are proud that STIC was awarded the contract for the Binghamton and Southern Tier region, as well as the Syracuse region, and has since been working with DOH to get the NHTD waiver operational.
As a Center for Independent Living we are pleased that a person-centered philosophy guided the development of the NHTD waiver. This philosophy is what has helped to make the TBI waiver so successful. There are many similarities between the TBI and NHTD programs, although NHTD will serve a different population of people and has some new services that are not available under any other Medicaid waiver. These new services include Peer Counseling, Home Visits by Medical Personnel, and Wellness Counseling Services. The rest of the services will be a combination of those currently offered through the TBI and Long Term Home Health Care waivers. These include Service Coordination, Assistive Technology, Community Integration Counseling, Community Transition Services, Environmental Modifications, Home and Community Support Services, Independent Living Skills Training, Positive Behavioral Interventions and Supports, Respite Services, Structured Day Programs, Congregate and Home Delivered Meals, Moving Assistance, Nutritional Counseling/Educational Services, Respiratory Therapy, and Nursing Assessment Services. Participants in the NHTD waiver will be the center of all services and active partners with their service providers in developing service plans that meet their needs and support achieving their independent living goals.
The NHTD staff at STIC is very excited to be involved with this program. DOH has set a goal to serve 5,000 people statewide within the first three years of the waiver. Our RRDC will work diligently to enroll as many interested and eligible people as we can. We welcome the opportunity to be a mechanism for people with disabilities to leave institutions or avoid placement in them. The NHTD Medicaid waiver is a program that follows the Independent Living philosophy and STIC is proud to offer this new way for New Yorkers with disabilities to return to meaningful lives in their communities.
Recently, TRAID has acquired some unique items that need to find a home in which they will be taken care of and properly used.
If you are interested in any of these items contact Gabrielle Xlander at (607) 724-2111 ext. 350 (voice/TTY).
The purpose behind this curriculum and partnership is to help people with disabilities and their families become more prepared to deal with disasters and emergency situations that may come their way. It is my job to help change the MOD curriculum as needed to make it appropriate and applicable for all people of varying ages and disabilities.
The Day Hab Program at STIC has already begun using this curriculum and some of the lessons in it, with the people we serve on a daily basis. We hope to reach more consumers with this great new curriculum through some of the other programs here at STIC such as:
Parents Empowering Parents support group
School-To-Life Transition program
Medicaid Service Coordination
A “Family and Consumer Safety Fun Day” will be held at STIC on April 14 from 1 pm - 5 pm. People with disabilities and their families who work with STIC or other community agencies are welcome. There will be safety kit give-aways, MOD hands-on activity centers, Fun, Safety and Preparedness games, and light refreshments for all! For more information on this event and the new “Masters of Disaster” safety curriculum, contact Miranda Hunter at (607) 724-2111 Ex: 348 (voice/TTY).
Born with muscular dystrophy, Jen became one of “Jerry’s kids”, a poster child for the Muscular Dystrophy Association. When interviewed for a telethon in which pity was the principal tool for soliciting donations, Jen stubbornly refused to play the role of a suffering child. She presented herself instead as an adventurous child full of life who wanted to be treated as any other child. I was always amazed at how she could take these types of situations and turn them to her advantage.
Throughout her life Jennifer Hitchcock-Ayala continued to lead by example and to demonstrate that any person can realize his/her dreams with steadfast determination, self-awareness and discipline. In 33 years Jen accomplished more than most people do in a lifetime. She went to college, worked full-time, got married, earned a Ph.D. in philosophy, wrote a book about her life and developed a curriculum for undergraduate students on disability, identity and civil rights. She was among the first people in our area to enroll in the Consumer Directed Personal Assistance Program (CDPAP) and the first to obtain 24-hour-a-day personal care. On several occasions the county in which Jen lived told her that they would have to “place her” in a nursing home. A powerful self-advocate, Jen fought for and won the right to remain in her own home with the services she needed.
For me and for many others Jen is an inspiration, not because of all she accomplished in spite of her disability, but for the person she was. She indiscriminately embraced everyone she met with kindness and compassion, especially children and animals. If there was a need she could meet to help someone out she did so without hesitation. She loved to learn, not just from books but from other people as well. She and I spent many evenings engaged in long debates about feminism, disability issues, religion and other philosophical topics.
Jen was Evel Knievel in a power chair, popping wheelies in her kitchen and racing up a steep hill at top speed just to feel the wind in her hair. She played a mean game of scrabble, could cook like nobody’s business, find a solution to just about any problem and could shoot liquid through a straw at incredible distances (which was generally aimed at me whenever I got out of line). Most importantly, Jen had a wonderful sense of humor.
Jen’s life was one small stone among billions, but with a distinct difference from the masses. Her impact on the still water of complacency has rippled throughout our community and far beyond. She challenged the norms of perception, attitude, policy and practice that disallowed freedom of choice, equal opportunity and independence for people with disabilities. While I repeatedly rammed my head into obstacles with more frustration than success, Jen quietly took them down one brick at a time. I think of my friend often and when faced with difficult dilemmas I sometimes wonder WWJD (What would Jen do)? I’m sure that wherever she is, Jen is laughing at me for that corny pun!
The Jennifer Hitchcock Memorial scholarship was established by her family and friends to provide funding for individuals with disabilities pursuing higher education. Donations to this fund can be sent to:
Jennifer Hitchcock Memorial Scholarship
c/o First Liberty Bank and Trust
Little Meadow, PA 18830
I’m STIC’s new Deaf Services Coordinator. Hmmm... Don’t know what to say about myself. Born in Inchon, South Korea, was adopted and grew up in Michigan. I have four sisters and a brother. Two sisters are deaf and one of them is my biological sister who is also deaf. Graduated from Michigan School for the Deaf.
I have a degree in computers from BCC. (I should have taken the advice from my high school teacher that I should take a career in teaching. I was young and stupid.)
I studied four different martial arts (Shito Ryu, Isshin Ryu, Tang Soo Do and Taewondo). In 2003, I was runner-up for fighting at the AAU National Championship in North Carolina. (Don’t mess around with me ;oP)
I’m SUCH a die hard University of Michigan fan. Also I’m a huge fan of four professional teams in Michigan: Detroit Pistons, Detroit Red Wings, Detroit Tigers and Detroit Lions. Also you’ll see me go crazy when the US National Soccer team plays against another country.
As an outdoor person, I love to ride a mountain bike.
ALL RIGHT. Enough about myself.
I’m a new Regional Resource Development Assistant working with STIC’s Waiver RRDCs. I live in Windsor with my significant other Kevin Warner. I have three children: Christopher &endash; 22, Travis &endash; 14, and Nicole &endash; 10. I graduated from Harpursville High School and other than the 11 years I spent in Del City, Oklahoma I have lived in the Southern Tier area my entire life. I enjoy reading, bowling, watching my children play sports and have been a cheerleading coach for the Windsor Youth Football Program for 5 years. Although coaching and working with children would be my first passion I would have to say that boating and especially fishing would take a close second.
My first involvement with STIC was as a member of the Board. I had the pleasure of getting to know Maria, and some of the good work that she, and all of you at STIC, do.
During most of the time that I was on the Board, I worked as an attorney at Legal Aid in Binghamton. I have also been in private law practice and worked as an attorney for Broome County. For the last year, my family has been split between Apalachin, NY, where we lived, and Cobleskill, NY, where we had a second residence. My wife works for the Department of Education in Albany.
I found out about the School-to-Life Transition program and some of the difficulties it had experienced with the schools. I spoke to Maria and Jess, and tossed around some ideas that I thought of through my previous experiences. I am currently working part-time in Transition, and after a few weeks, I am starting to get the hang of things and some of the efforts are coming to fruition. I practice law the other days, mostly in Cobleskill.
I have 5 children, the next to the youngest of which has Rett’s Syndrome. In that regard, I have had many years of exploring and fighting for various services. Hopefully some of my experiences can be used to benefit our consumers.
Stop by and say “Hi!”, and let me know anything that I can help with through the Transition program.
Hello fellow STICsters, my name is Desiree McClintock and I am extremely excited to finally be a member of the STIC family!
I have worked within the Human Services field for several years and have worn many hats such as Group Home Manager, Behavior Specialist, and Director of Social Services for a local skilled rehabilitation center as well as working with OMRDD/TBI Waiver programs as Service Coordinator and Program Director. Also, I have a strong background in sales and marketing that allowed me to travel throughout the United States and abroad. I relocated from New Jersey in 2002 and reside in Hillcrest with my husband David. I hold a BA in psychology from Ramapo College in Mahwah, NJ along with several other certificates and I am slowly working toward my Master’s in psychology through Capella University.
I look forward to working with all of you in my new role as Quality Management Specialist.
I’m a new Peer Counselor at STIC. Well first off let me say that I am a firm believer in my own righteousness, there should be more people in the world like me—on second thought maybe not. God broke the mold when he made me. I have five children and a husband (I definitely question my sanity at times). They are my world; I have been very blessed. My absolute passion is helping people, which I have done since a child. I always felt that I could save everyone, and when I realized I couldn’t I focused on saving those I could. One thing I have learned from Life, is that you have to start with yourself first. A hard lesson but now I know. I learned if you don’t take care of yourself, you are no good for others. My passion for helping people led me into nursing, which I really love. I have been a chemo/hospice nurse, respiratory nurse, mental health nurse, rehab nurse, and a supervisor at a nursing home. All of which I found very rewarding. I am happy to be an employee at STIC, I look forward to being part of a very special organization that believes in helping others help themselves to be all that they can be.
I am the new Behavioral/Program Specialist at STIC. That basically means I work with families of children with disabilities to develop home-based programs to help them work on behavioral issues, independent living skills, social skills, etc. I was lucky enough to be here for my last internship as I was finishing my Master’s degree, and realized what a great place it would be to work. I created a position here based on some part-time consulting I was already doing with children with disabilities and their families. I am thrilled that STIC was willing to take this “Leap of Faith” with me as we develop this program!
In working to find Ray a fulfilling job this has happened several times. Ray becomes very nervous before interviews and will fill his pockets, hands and mouth with beads and trinkets. He would refuse to get out of the car and would shut down. After 17 months of supported employment it was beginning to look like a dead end and talk of closing his case came up. I began working with Ray in September and decided to really get to know him and see if there was anything I could do for him, other than finding him a job. I realized that Ray has anxiety issues around new people and new surroundings. I also found that he did not like day habilitation because of the large number of people around him. I brainstormed with Ray about what he really enjoyed and what he really wanted from a job. He likes to be busy, he likes animals, and likes to be around a few people but not more than four. Ray also told me he likes to keep things regular and he doesn’t like change. I decided that we must find a job where there are not a lot of employees, not a lot of interaction with customers (because they would be new people), and a place that had routine work.
Together Ray and I set out searching throughout the yellow pages for offices, businesses, and types of work. We started with real-estate places to see if they needed someone to do flyers, brochures, and routine office work. From there we moved onto golf courses because Ray thought he’d enjoy picking up and washing the balls. Then just before Thanksgiving Ray said he would like to work with animals. We sent out 32 mailings to local vets and groomers in his county. The week before Christmas we received several calls in reply to our letters. I was able to work with one vet to set up employment without a stressful interview. Ray started his new job as a custodial tech on January 30. He has many job duties, he gets to see the animals, and he is only around one to four people during his shift. Ray works one half-day a week and is doing such a good job they may increase his number of days.
It just goes to show that even situations that look impossible can have a happy ending. It just takes someone to not only listen to the person but to hear what he or she is telling you.
This is a FREE Event
Sponsored by: Family Resource Network
Reservations are Required
Call (607) 432-0001
Featuring:
Julie Michaels Keegan, Attorney
Julie Michaels Keegan is a special education attorney who practices throughout upstate NY and who has devoted her practice to the rights of children to a high-quality, appropriate education. Having negotiated the special education system on behalf of her own two sons, Julie understands first-hand the challenges parents face when trying to obtain the right education environment. This is a rare opportunity to learn from Julie how to advocate for your child’s educational rights.
Always a great way to network with other parents and gain valuable information through guest speakers and fellow parents! These group sessions are available to all parents with a child with a developmental disability and coordinated by Sally Colletti, Owner of Advocate for Autism.
Call 754-9694 or visit www.advocateforautism.com for more information!