People First, Integration Last?

By Ken Dibble

In October OPWDD published a draft five-year plan for 2011-2015. It mostly focuses on the proposed new "People First" 1115 Medicaid waiver, but also describes what will happen in the 2 to 3 years before that waiver begins to roll out. The plan repeats, frequently, many buzzwords that are near and dear to advocates: "choice", "integration", "individualized supports", "self direction", "self determination", and "performance based outcomes". The plan says all of these things will be more available under the new waiver. It says that "real person centered planning" will drive everything.

However, the nitty-gritty details of the plan don't support the birth of this brave new world.

An 1115 Medicaid waiver is a demonstration project that is supposed to test innovative policies and practices. OPWDD's 1115 waiver will be a managed care system that allegedly will include every service OPWDD now provides through its Home and Community Based Services (HCBS) waiver and other funding mechanisms, as well as all acute medical services, such as dentistry and primary physician services, that OPWDD- eligible people receive via Medicaid.

OPWDD will create "Developmental Disabilities Individual Support and Care Coordination Organizations" (DISCOs) as local managed care entities, a concept that has advocates envisioning white-leisure- suited John Travolta, hand upraised, feet apart, introducing himself as your Service—oops, "Care"—Coordinator. Unfortunately, this isn't as funny as all that.

The plan has a detailed section on quality measurement. Quality measures rule the DD world; these are the checklists that auditors use to evaluate programs. If it's not required to pass an audit, most administrators don't take it seriously. Virtually none of these new ideas appear in the plan's checklist. The only mandates there are "health and safety" and fiscal governance—just like the old OPWDD.

What about integration? The only definite commitment OPWDD is making in that area is to downsize and close developmental centers and "specialty units" until about 300 people are left in them. They say the 300 will be there "temporarily". But OPWDD has always claimed the people in its institutions are there "temporarily", while having a poor track record of moving them out. There are about 1300 people in these facilities now. OPWDD's "closure" plan is to be completed over 3 to 4 years and will be mostly done before any of the new People First person-centered planning, self-direction, or integrated service features become available. Out of some 38,000 people in congregate segregated residential facilities, in 4 years' time, OPWDD plans to move about 1000. While we applaud the closures, even this small step may not be a commitment to integration for those people. We've heard that funding may be coming soon to assist some people in Broome Developmental Center to move to real integrated settings. However, the Broome DDSO is still building more group homes for such people, and other DDSOs around the state are doing the same for DC residents.

OPWDD claims its new system will effectively coordinate care "across systems". That is, the problems with getting services that people who have both developmental and mental health disabilities face are supposed to be fixed.

We at STIC know some of these people. One is currently in jail because of a need for intensive integrated services that al l levels of both OPWDD and OMH have refused to meet. Others have been deemed no longer eligible for OPWDD services; sometimes this is because when they demand to leave an institution without going to a group "home", their eligibility is suddenly re-evaluated. In one case the person's data was simply removed from OPWDD's database; the only option is to re-apply from scratch. We've seen people shuttled back and forth between crisis center and jail repeatedly. Do these people have "service coordination"? They did until their eligibility for the service was taken away. When that happens, those we work with get the equivalent service from us informally. All of their formal and informal service coordinators have worked hard to bridge gaps between OPWDD and OMH and have run up against solid stone walls of refusal to accept responsibility or to comply with policies, procedures, regulations, and "memoranda of understanding" that supposedly address the problem. The problem is only partly local.

What does OPWDD's "People First" waiver plan say about this? Well, there is no evidence that OMH was significantly involved in designing the plan, and there is no mechanism to require OPWDD or OMH administrators to take responsibility for ensuring that services are provided. Instead, DISCOs, which will be local not-for- profit agencies, will provide "care coordinators" who must bridge gaps between state agencies to get services in place. Just like the old OPWDD.

All year long, OPWDD held forums and "listening sessions" and accepted oral and written input from people with disabilities, their family members, and advocates around the state. Hundreds of people wrote and spoke about what they need and how they think the new system should work. OPWDD's plan inventories the comments collected; the figures are there in black and white.

Although the plan shows that OPWDD's residential service system will continue to consist mostly of segregated congregate facilities for the foreseeable future, very few of the comments received called for continuation of segregated facilities. The overwhelming majority of comments, including from people who now live in, or have relatives who now live in, such facilities, called for more supports and services to be available in integrated residential settings.

Although OPWDD claims that the input they collected demonstrates that "safety is critical", only a couple dozen comments out of the hundreds received addressed "safety". The vast majority of those who commented made it clear that what is "critical" is integration, choice, self direction, and consumer satisfaction. But the proposed monitoring system for service providers does not reflect this at all.

All of this is just like the old OPWDD, where people are asked to speak out and are ignored, and grand pronouncements are made and forgotten, while bean-counters, program auditors, segregated program administrators and union officials continue to do business as usual.

Especially telling: Under proposed new federal rules for HCBS waivers—the kind of waiver OPWDD has now—OPWDD could not keep using waiver money to run most of its group homes or segregated congregate day programs. It would have to move people out of those facilities into personalized integrated settings with appropriate services and supports. Regardless of the bright and shiny rhetoric in the "People First" waiver plan, by converting to an 1115 waiver, which has no such rules, OPWDD will, first and foremost, protect its ability to do business as usual.

And whatever business it does, it will do it through managed care. There are many unanswered questions about how that will work.

The DISCOs will get capitated rates to fund all services needed by OPWDD-eligible people. A capitated rate is a single lump sum that does not vary directly in relation to the type, amount, or cost of services provided. The amount will vary, instead, based on "needs assessments" for each person served. The more intense the person's needs, the higher the rate. This is similar to the system OPWDD uses now to set "Self Determination" (CSS) budgets for individuals.

OPWDD says it intends the capitated rates to create incentives to use less-expensive, more integrated services and supports. We at STIC strongly support this idea, but the plan doesn't provide evidence that things will actually work this way. At least in the beginning, rates will only be partially capitated, so DISCOs will be able to get reimbursed for a portion of cost overruns if they can justify them. The plan has no details on what assessment tools will be used or what kinds of rate amounts we may be looking at. It does commit to keeping large numbers of people in very expensive segregated congregate facilities for the foreseeable future. How can OPWDD do this? Well, either there won't be strong disincentives for segregation built into the rates, or living in a group "home" will get you an automatic approval for a cost overrun. Meanwhile, the current CSS process does not result in a guaranteed budget amount of any size. Although the process is supposed to be based solely on functional needs, it has often been tweaked over the years to cut spending, and whether or not any money is available at all to serve new people has been dependent on the legislature. The plan does not say how OPWDD will guarantee that the 1115 waiver, which must not have waiting lists, will be fully funded to meet all needs.

At press time OPWDD had issued a "Request for Information" (RFI) that seeks detailed answers to very specific questions about a few aspects of the plan, such as person-centered planning, needs assessments, and "care coordination" and incentives under managed care. We certainly will submit a response. Notably, though, the RFI treats the plan's health/safety/fiscal governance-focused evaluation system as a done deal, and it does not envision creating a center of authority that could compel different state agencies to serve people with dual diagnoses.

We are talking with OPWDD Commissioner Burke and other top state decision-makers in and outside of OPWDD to change the direction in which things seem to be heading. We're also talking to federal officials about creating incentives for change by other means. We appreciate Burke's vision for the future and her willingness to maintain a dialog with consumers and advocates. We hope that the weight of past practices, and the people who support them, won't keep her from leading OPWDD in the right direction toward a future that truly puts people first.

You can help by contacting OPWDD and insisting that the input that you have provided in support of integration, choice, self direction and consumer-satisfaction quality measures be respected and form the basis for the new OPWDD. Here's where you can reach them:

Phone: (866) 946-9733 (voice)
(866) 933-4889 (TTY)

January 2012


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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OPWDD Scandal Expands

New stories continued to be reported this fall concerning the ongoing OPWDD scandals. Particularly disturbing were revelations that group "homes" have very high rates of unexplained and unnatural deaths of residents, and that OPWDD illegally violates the confidentiality of whistleblowers who file complaints with the agency's ombudsmen.

On November 5, the NY Times reported that "one in six of all deaths in state and privately run homes, or more than 1,200 in the past decade, have been attributed to either unnatural or unknown causes," while the same figure in Connecticut and Massachusetts is approximately one in 25 deaths. The Times also reported that unlike those and other states, NY does not effectively track or investigate the deaths to detect trends and issue statewide alerts to service providers.

Fewer than 25% of reported questionable deaths over ten years were investigated by the NYS Commission on Quality of Care (CQC), the state agency that receives, or should have received, copies of the death reports. The Times reviewed all 222 CQC investigation files.

A quarter of those files indicated that a person choked to death (of local interest, one such death occurred at the J.M. Murray Center in Cortland). There were many cases in which a person known to have trouble swallowing was fed the wrong food. People whose diet plans required "chopped" or "ground" or "bite- size pieces" were given large chunks of food instead. There were also many cases where a person with a swallowing issue who was known to steal food was able to do so due to lax supervision. In one such case, there were theoretically enough staff members available for each staff to supervise only two people during a meal, but more than half of them weren't present when a resident stole food off another person's plate and choked on it.

In half the cases, CQC identified "problems with the quality of care" in the group "homes". Other deaths resulted when people who had trouble walking fell down stairs because they were unattended, and some people who ran away repeatedly from facilities were found dead. In a well-publicized case, a person with quadriplegia who could only move his head slightly was left alone in a bathtub being filled with water for 15 minutes; the person slid down into the water and drowned.

The Times analysis showed that the average age of people who died of unknown causes was 40, while the average at deaths due to natural causes was 54. This suggests that the unknown deaths also likely resulted from lapses in care.

Although OPWDD claims very high staff-to-client ratios, at any particular time most of the staff available "on paper" are either administrators, clinicians, or maintenance or security workers who never or rarely have contact with people with disabilities; or they are taking sick leave, regular days off or vacation, aren't assigned to the current shift, or are working in other locations to substitute for missing staff. Thus it's common for a facility with an alleged "1 to 1.7" staff-to-client ratio to only have one or two staff available to supervise between 6 and 12 people at certain times of day. OPWDD acknowledges that it has a staff shortage problem and that it relies too heavily on overtime to partially address it. However, the agency insists that its highly-paid unionized workers can and will adequately support tens of thousands of people in very expensive segregated residential facilities for the foreseeable future; and in a time of ongoing funding cuts, it refuses to commit to divesting itself of state-operated programs or moving significant numbers of people into less expensive, and safer, integrated settings (see People First, Integration Last?).

The Times also reported that unlike other states, NY rarely takes systemic, comprehensive action to address disturbing trends. The state expects residential facility operators to investigate themselves to "determine how a person in their care died and, in a vast majority of cases, accepts that determination." If a facility decides there is a quality issue, responses vary widely. In not-for-profit agencies, low-level staff are frequently disciplined or fired, but higher-level officials only rarely suffer consequences. In state-operated facilities, union contracts requiring arbitration make it extremely difficult to take significant action against incompetent or criminal workers. Even when the CQC investigated, it only recommended reforms to the facility where the death took place. For choking deaths, CQC often told facilities to tighten their definitions of terms like "chopped" or "bite size" food, but the state never stepped in to standardize the meanings or ensure uniform training.

In contrast, states like CT track serious incidents and respond quickly when trends are noticed. For example, in 2006 CT officials took notice of four choking deaths. According to the Times, "they developed a statewide program—two days of initial training and a refresher course every two years thereafter. The state has had just one choking death since 2007. New York has had at least 21 during that same period."

The Times also investigated the 2009 group "home" fire in Wells, NY that killed four residents. OPWDD's rule requiring the fire alarm monitoring company to call the facility before calling the fire department when an alarm was triggered wasted valuable time and violated the state fire code. The local fire department did not know the facility housed several people with multiple disabilities, and this lack of information hampered firefighters arriving on the scene because they did not know what to expect. After the fire, both OPWDD and CQC investigated, but it appeared the investigations used a standardized format. New CQC Chair Roger Bearden said the questions "were not germane to the fundamental questions posed by the Wells fire—what was the cause . and what can we do in the future to prevent such fires from occurring in such a tragic manner."

Meanwhile, the Poughkeepsie Journal continued its investigation of OPWDD's failure to fire or effectively discipline employees guilty of abuse and neglect in OPWDD-operated group homes.

On September 17, 2011, the Journal reported that in "2007, a female staff member at an eastern Dutchess County group home allegedly held a disabled person by the hair and forced the person to drink an unidentified substance . while peppering the person with choice vulgarities and finger jabs to the face," and "at another home in Putnam County in 2009, an aide knelt on a disabled person's back, while grabbing the person's face or shoulder, authorities alleged; he then 'influenced' a co- worker's report of the incident, for which he faced a criminal charge of assault." Neither of these workers was fired.

The Journal also reported that "one worker, who disciplinary documents allege 'forced ... a person with a disability to engage in oral sex' in a laundry room, agreed to resign and got 4 1/2 months' pay, a promise of a 'neutral reference'—as did many others—and uncontested unemployment benefits."

The Journal found that "the state routinely settled abuse and neglect cases, in 26 cases agreeing to fines of less than $250 as the top penalty. Just 22 of the 341 cases were tried in formal proceedings, and—perhaps explaining why the state settled cases—independent arbitrators there reduced penalties sought by the state 70 percent of the time."

OPWDD and CQC both released reports in response to the ongoing revelations this fall.

OPWDD's 6-month progress report, Building a Stronger System for People with Developmental Disabilities, contained a wealth of statistics that indicated the agency is trying to improve things and may be succeeding. For example, the agency says it has "nearly [doubled] the number of OPWDD employees whose termination the agency is seeking for abuse and neglect to130", has increased by 88% "the number of employees found guilty of abuse or criminal activity that the agency has placed on unpaid suspension while seeking their termination", and has increased "the percentage of physical abuse allegations that have been reported to law enforcement from 16 to 93 percent, and the percentage of sexual abuse allegations reported to police from 75 to 98 percent." Out of the 130 workers suspended without pay while the agency sought to fire them for neglect or abuse, Broome Developmental Services had 16 total, 10 for abuse.

OPWDD has apparently stopped expecting defeat when attempting to fire criminal workers, but there is little evidence that its new aggressive stance will result in better outcomes. Although OPWDD says it now "mandates the termination of any employee guilty of abuse or neglect", under the state's new union contracts these matters remain subject to binding arbitration. The agency says it has issued guidelines to arbitrators that include a "table of penalties for consistent discipline", but it is not clear that OPWDD can "mandate" arbitrators to do anything, and it remains to be seen whether arbitrators, who have issued many decisions that allowed state workers who were obviously guilty of crimes to continue working, will change their behavior.

In November the CQC issued a press release outlining what it would like to do to improve its effectiveness as an oversight agency for OPWDD. The proposed steps included:

  • Focus on systemic issues to increase the impact and effectiveness of its oversight role
  • Establish direct access to the incident management systems of the agencies CQC oversees
  • Improve investigative targeting through data analysis
  • Raise the visibility of CQC's oversight role and improve care through broad dissemination of reports, investigative findings and recommendations
  • Expand involvement in policy development to drive needed changes
  • Increase outreach to disability stakeholder groups
  • Improve customer service by centralizing and strengthening CQC's intake process

In face-to-face discussions with people with disabilities, new CQC Chair Roger Bearden has indicated that he understands the issues, and he appears to be committed to addressing them. The above items describe potentially very effective reforms.

The most serious barrier to achieving them is money. CQC lacks a sufficient budget to do these things, and in this fiscal climate it's not clear they will get more funds. Current regulations for incident reporting and investigation are part of the problem; they assign equal importance to whether someone in a group "home" was sent to bed a half hour early and whether someone choked to death. Regulatory reform might allow CQC to "do more with less", but without a much bigger budget, the "more" still won't be enough.

At the same time that Bearden and OPWDD Commissioner Courtney Burke were appointed to replace their abruptly fired predecessors, Governor Cuomo also appointed former CQC Chair Clarence Sundram as a "special assistant" to address "vulnerable populations".

Sundram was praised during his CQC tenure for his outspoken willingness to call state agencies to account for health and safety issues, an attitude that hasn't been seen at CQC since the advent of the Pataki Administration. Sundram was also criticized by disability advocates for his negative attitude toward real community integration; in public speeches he often repeated a handful of anecdotes about people with developmental disabilities who, in the name of protecting their civil rights, had been allowed to come to grief by neglectful or incompetent service providers.

While reforms at OPWDD and CQC have been highly publicized, Sundram has worked in near secrecy. Sources indicate that he has been involved with high level Cuomo staffers such as Deputy Secretary for Health James Introne, and Medicaid Director Jason Helgerson, in shadowy plans to coordinate the activities of OPWDD, CQC, OMH, DOH, and OCFS (the Office of Child and Family Services, which oversees youth detention and other segregated facilities that house large numbers of children with mental health and/or developmental disabilities). It's been claimed by at least one high official that Cuomo himself has told the agencies to develop a "real Olmstead plan". (The US Supreme Court's Olmstead decision says that failing to serve people with disabilities in the most integrated settings appropriate to their needs violates their civil rights under Title II of the ADA, and suggests that states with a comprehensive, effective plan to ensure that people seeking such services receive them with deliberate speed would be immune from lawsuits on this issue.) There have been no opportunities for public input into the planning of these officials. Some state agencies have been acting, apparently unilaterally, to propose plans to enact managed care and improve quality, and some of these plans, such as the "medical homes" program and OPWDD's "People First" waiver, appear to conflict with each other.

Sundram did make a presentation to Cuomo's cabinet in October that was publicly released. We only have his PowerPoint slides and a witness's impression that Cuomo was very concerned about his data. The data show that NY has highly inconsistent policies for addressing abuse and neglect in residential settings. The State Education Department, which operates some residential schools and funds or oversees others, has virtually no policies, procedures, or requirements regarding serious incidents. Only DOH and OASAS have mandatory time frames for completion of incident investigations. Only DOH requires a NYS licensing agency to investigate incidents. The agencies also have "different definitions of abuse and neglect", "different definitions of who can be reported as an abuser", and "different standards as to when to call law enforcement".

New Yorkers with disabilities, their families, and advocates have been shocked and angered by a full year of revelations of widespread incidents of the worst kinds of criminal behavior and financial malfeasance in the developmental disabilities system. OPWDD employees say that people who report these issues face retribution from supervisors and administrators. In response, in July Commissioner Burke announced an "I Spoke Out" campaign to encourage employees to report abuse, neglect, and corruption. So in November the disability community was staggered when the NY Times reported that OPWDD has been violating state Mental Hygiene Law by requiring "ombudsmen" to reveal whistleblowers' names to the agency's administrators.

The Times learned of this from an OPWDD day program employee in the Albany region who reported several incidents of abusive behavior by staff to an agency ombudsman in 2010. The ombudsman told the worker that she had reported her name to "a top official" in the region. The employee was then required to undergo "counseling" from a supervisor and was formally charged with filing false claims. Another staffer corroborated the story, saying the employee was "being bullied, threatened, and totally retaliated against in so many different ways."

State Mental Hygiene Law establishes the ombudsman positions, and states that ombudsmen are required to "receive and keep confidential any complaint" from employees. Despite Burke's July announcement of the "I Spoke Out" campaign, in August OPWDD spokesperson Travis Proulx told the Times, "there is no confidentiality for any employee who is reporting abuse or neglect, even to the ombudsman." This belief, held by OPWDD administrators, was based on a complete misinterpretation of a 1989 court decision which actually found in favor of an ombudsman who sued the state for trying to force her to reveal the names of people who had made complaints.

Confronted with this information by the Times reporter, OPWDD backed off its claims. The Times stated that CQC is slated to take over operation of the ombudsman program on December 23, and CQC Commissioner Bearden has said that complaints to ombudsmen will be kept confidential. Burke said that she supports this action.

However, OPWDD is still pursuing charges against the Albany region program staffer, and against Jeffrey Monsour, the whistleblower who experienced retaliation after complaining to the Medicaid Inspector General about falsified records related to fire safety in group homes, among other things (see AccessAbility, Summer 2011). In the wake of these developments, OPWDD staff members, as well as people with disabilities and their family members and advocates, expressed strong reservations about the agency's good faith with regard to whistleblowing.

Commissioner Burke Visits STIC

By Maria Dibble

In response to an invitation from Southern Tier ADAPT and STIC, OPWDD Commissioner Courtney Burke visited STIC in October.

Consumers invited her because they wanted to tell their stories, convey their wishes, and ask for her help in achieving their dreams.

The Commissioner opened the meeting by describing her vision for the new People First managed care Medicaid waiver. She said that the new waiver would be flexible enough to cross systems and provide the services consumers wanted and needed. She said that because the new waiver was managed care, it would save money so that funding would be available to offer the services consumers want and need to help them fulfill their goals. She then said that the reason she was at STIC was to hear consumers tell their stories. And tell their stories they did.

Consumers were extremely articulate and very passionate about their personal experiences, as well as their goals for the future.

A common theme ran throughout all of their narratives: each person has been denied the opportunity to live in their own apartment in the community despite repeated requests; each has been psychologically and/or physically abused; and each has been given little to no training or assistance in realizing their dreams of independence.

Choice is one of the major values of OPWDD, yet in each case, people told of how their choices were not respected, or were ridiculed, and were completely disregarded. If the person was or is living at Broome Developmental Center, he/she is told they must first go to a "step down unit", another name for a group home, and after that they might eventually be able to live in their own apartment. In the case of those already in group homes, they are told of obstacles (some created by the group home), they are told they aren't ready, they don't have skills, etc., yet no one will do anything to help them learn those skills.

Service Coordinators are told there aren't enough "units" of Day Habilitation services, and/or there is no money or mechanism for the provision of one-on-one support, especially 24/7, so the consumer is stuck in limbo getting more and more frustrated and exhibiting more and more "behaviors". The person is then told, "See, you can't even be good for a month, how could you live in the community?" and the cycle perpetuates itself with no positive outcome.

One person even stated that the only way she could come to meet with the Commissioner was to give up her weekly peer counseling session at STIC. Trips to STIC are often held hostage for "good behavior" or are traded off with other things the person might want to do at STIC. Transportation is limited so if they want come to STIC multiple times in a week for different meetings, they are forced to make a choice of one time.

Commissioner Burke and her staff heard these stories with deep empathy and compassion. She appeared to be genuinely moved by the stories and the consumers' universal desires for independence and freedom.

Mark Lankes, the recently appointed Director of Broome Developmental Services, was also at this meeting. Consumers, their families and STIC staff are looking for changes to happen locally. We understand that change takes time, but we are cautiously optimistic that now that they have made their stories publicly known, they will get what they need hopefully long before the new waiver takes effect 3 or 4 years from now.

People with disabilities left the meeting with a sense of hope and gratitude because the Commissioner validated their dreams by hearing them with compassion and respect, something that has been seriously lacking in their lives.

We greatly appreciate Commissioner Burke taking time out of her hectic schedule to come here and meet with us. Clearly, she sees the wishes of consumers as a top priority in the performance of her job. OPWDD has presented an ambitious plan for the future. If she ensures that the agency fills in the important remaining details appropriately, creates a performance evaluation system that puts consumer satisfaction and integrated outcomes first, and works effectively with the heads of other state agencies to accept responsibility for cross-systems service coordination, she has the potential to become the most visionary leader the agency has had in decades. And as always, STIC stands willing and eager to help her to create a service system free of barriers to consumers' choices, independence and freedom, a system that values community integration above all else.

Managed Care: Seamless or Seamy?

We are continuing to collect information on the Cuomo Administration's plans to force everyone on Medicaid into managed care, but there remain many unanswered questions.

Here's what we know at this point:

As of October 1, if you're required to be in "mainstream" Medicaid managed care, your drug coverage is also through managed care. If you have Medicaid only, your plan can require prior approval for any prescription, including antiretrovirals, anticonvulsants, antipsychotics, antidepressants, and anti-rejection drugs. If you have both Medicaid and Medicare, Medicaid will no longer pay for those types of drugs if your Medicare Part D plan won't cover them. For all Medicaid recipients, you'll have to get prior approval to fill more than four opioid prescriptions in a month. The "prescriber prevails" rule still applies to disputes over whether a drug is covered for State Plan Medicaid, but it does not exist for managed care Medicaid.

Most "exemptions" and "exclusions" for Medicaid managed care are being phased out. ("Exemption" means you aren't required to be in managed care but can choose to be; "exclusion" means you cannot be in managed care.)

As of October 1, exemptions and exclusions no longer exist for people: whose primary care physician doesn't accept any managed care plan; who have HIV/AIDS; who are adults with serious and persistent mental illness or children with serious emotional disturbance; who have transportation or language issues; who live temporarily outside their home district; who are pregnant; or who are "restricted recipients" (people who have been restricted to using one doctor or one pharmacy due to concerns about abuse of services or prescriptions). Also, if you see a specialist who doesn't accept any managed care plan for a chronic condition, you can now only continue to see that person for 6 months.

The exemption for homeless people will end in April 2012. That for nursing home residents will end in October 2012. Exemptions for Medicaid waiver participants, people who are "similar" to waiver participants, people who have end-stage renal disease, low birth-weight infants, and Medicaid Buy-In participants will also end in 2012 or 2013 but we don't have a timetable.

The only remaining permanent exemption will be for Native Americans. The only remaining exclusions will be for people who: have both "original" (not "Advantage") Medicare and Medicaid; have a Medicaid spend-down; have private insurance as well as Medicaid; have Emergency Medicaid (typically undocumented aliens granted temporary coverage for a medical emergency); or have limited coverage for specific issues such as cancer, TB, or family planning.

Beyond this point, things get progressively more unclear.

One issue is the difference between "mainstream managed care" and "managed long-term care" (MLTC). As of August 1, "traditional" personal assistance services (PAS)—but not CDPA—"became available" from mainstream managed care plans for people who have "community Medicaid". At that time very few people who actually need PAS services were required to be in managed care. That changed on October first as described above.

But if you need PAS, you would most likely be eligible for MLTC. Mandatory enrollment for MLTC will begin to be phased in on April 1, 2012. People who have both Medicaid and Medicare who are over the age of 21 and need homecare for 120 days or more will be required to be in MLTC. Other people probably will too, but that has not been determined. MLTC plans will cover all forms of homecare, including CDPA; nursing "homes"; some things that Medicaid waivers cover, like home modifications and some durable medical equipment; and some purely medical things like dentistry, optometry, PT, OT, and more.

Although the Cuomo Administration says it intends to have all Medicaid recipients in managed care that covers all of their Medicaid-funded services, the information available so far indicates that while mainstream managed care covers hospitalization, ordinary doctor visits, and prescriptions, MLTC does not, and a person cannot be in both types of managed care. So if you're mandated to be in MLTC, you won't be subject to managed care for drug coverage. This does not make sense, but it does appear to be the case.

Things get murkier when we come to the topic of "health homes".

The health home program comes from the Affordable Care Act (ACA, or "Obamacare"), which offers states a 90% federal Medicaid match for people served by the program. The match only lasts for two years though; then it reverts to the state's standard match (in NY, 50%).

The idea is to coordinate acute medical, "behavioral", and social services for people with high usage rates of expensive medical services such as hospitals, in order to cut costs. Those to be served are people who have at least two chronic conditions, have one chronic condition and are at risk for another, or who have one serious and persistent mental health condition, not including "serious emotional disturbance" for children. Chronic conditions are limited to: substance abuse, asthma, diabetes, heart disease, significantly overweight, HIV/AIDS, high blood pressure.

The social services would include things like finding housing, arranging for transportation and employment, and peer support and independent living skills training. These are things independent living centers like STIC provide and health homes could contract with them.

The state says it knows of about 970,000 people who would be eligible, and has already solicited bids from providers. The providers will act as care coordinators, and since those eligible will also be in managed care, it appears that the managed care entity would contract with health homes to provide the service, and pay for it. It's assumed in that case that the health home would take over the care coordination function from the managed care agency—but that can't be entirely true or the managed care agency would have no mechanism to determine the need for the health home.

Locally, UHS planned to apply to be a health home. We don't know whether they were awarded a contract, nor do we know how they plan to address the social service issue.

Next we come to "behavioral health organizations" (BHOs), and here we see what looks like a political delay tactic. BHOs are existing mental health managed care entities. If you have private medical insurance and get mental health services, one of these organizations is paid by your insurance company to do the "managing" of your care. One BHO will be designated for each OMH region; ours locally is Magellan.

BHOs won't actually manage any care though; instead they'll review the actions of mental health service providers and comment on whether they are appropriately limiting services. BHOs allegedly can't restrict service provision, but they will give a "bad report card" to entities that they think provide too much service. This will continue for three years, after which the state will use the "report cards" in some way to implement managed mental health care.

People with serious and persistent mental illness are already mandated to be in real managed care right now. Apparently the management does not extend to actual mental health services for these people, though it certainly covers the medications used to treat them.

The "Medicaid Redesign" process is ongoing, and advocates are trying to get incentives for use of integrated peer-based services and supports added to the BHO regulations.

Then there's people with developmental disabilities. They meet criteria to be forced into various forms of managed care, including, in some cases, health homes. It doesn't appear that DOH has considered the possibility that a person with a developmental disability will need a health home. There's no evidence that the design of OPWDD's "People First" managed care system (see cover) has been coordinated with the rest of the Cuomo Administration's managed care planning. Officials insist that within 3 years, the entire system will be a "seamless whole". But OPWDD's plan, which doesn't resemble the other state managed care systems in any way, won't even begin to roll out for 3 years and is projected to take up to 10 years to complete.

Also unresolved is how the Community First Choice (CFC) program fits in. This program, created by the ACA, lets states opt in to offer a range of "home and community based" services to people with specific types of needs without a Medicaid waiver. States will get an increased Medicaid match for the program. The feds have not yet released final CFC regulations, but Cuomo Administration officials have promised to implement it. CFC appears to create an entitlement to adequate levels of services for eligible people, much like State Plan Medicaid. But Cuomo officials have said they want every Medicaid recipient in managed care, which eliminates entitlements. (OPWDD's proposed 1115 waiver prohibits waiting lists but does not guarantee adequate levels of service.) Some advocates claim that CFC could be part of OPWDD's waiver, but the program's homecare-centric concept isn't applicable to many OPWDD services.

Officials in Cuomo's cabinet and those in DOH have made contradictory statements about all this to advocates; the same prominent DOH official has made contradictory statements to different audiences at different times. Although Cuomo has gained a reputation for getting what he wants done, done, it's hard to avoid the conclusion that his underlings don't actually know exactly what they want done or how to do it; they don't even seem to be aware of all of the complexities and overlaps involved.

This is a very dangerous situation for people with disabilities, who are likely to fall through the many impending gaps or get tangled in the many contradictions. They may have to look to the state legislature to protect them, and it is not clear that any legislative leaders currently have the stomach to go head-to-head with Cuomo should it become necessary.

We'll keep you informed.

End Corporate Control of Our Government!

US law says corporations are "people", with the same civil rights as human beings. The 2010 US Supreme Court Citizens United ruling gave corporations free speech rights. It equated money with speech to ensure that rich corporations will always be able to buy elections.

This is why:

  • A majority of citizens favor single-payer health care but we can't get it
  • A majority of citizens favor strong anti-pollution laws but we can't get them
  • 60% - 70% of citizens, including super-rich investor Warren Buffett, say taxes should be raised on rich people and corporations to pay our debts but we can't get that done
  • 69% of Americans oppose cutting Medicaid but it's on the chopping block anyway
  • 89% of Americans in a 2010 poll favored raising taxes to ensure that people with disabilities can live in their own homes instead of segregated facilities, but we can't get Congress to act
  • The "Tea Party" is mostly funded by rich corporations, corporate executives, and corporate lobbyists like Fox News, the Koch Brothers, and the US Chamber of Commerce; they want to deregulate corporations and cut taxes for the rich and they are duping good-hearted people into supporting them

We must face facts. The REAL people of the United States, including people with disabilities, will never get what they want from government until corporate power is broken.


Join the movement to amend the US Constitution to end civil rights for corporations:

Take back our government from a small minority of far-right-wing anti-tax fanatics and corporate shills:

Boycott products made by the Koch Brothers: Angel Soft(R) Brawny(R) Coronet(R) Dixie(R) Mardi Gras(R) MD Bathroom Tissue Quilted Northern(R) Soft 'n Gentle(R) Sparkle(R) Vanity Fair(R) Zee(R)

Courts Watch

Joseph S. v Michael Hogan Settled

This case, filed in 2006 by New York Lawyers in the Public Interest (NYLPI) and Disability Advocates, Inc. (DAI), against New York's Office of Mental Health (OMH), concerned New York State's confinement of people with mental illness in nursing facilities. In September, the state agreed to a settlement.

We were unable to view actual court documents in the case. According to the NY Times , the plaintiffs alleged that state psychiatric centers had "turnaround agreements" with nursing facilities in NY and surrounding states that allowed them to transfer inmates back and forth.

We reported on this in AccessAbility, Summer 2006. At that time the state had discharged about 1000 people from psychiatric centers directly to nursing facilities, and frequently to locked wards within those facilities, even though the people were not dangerous to themselves or others and therefore did not meet legal criteria for being locked up. The inmates did not receive any mental health treatment except medication, and did not receive any rehabilitation or recovery services. They spent their time mostly sitting around and watching TV.

There had been several motions and the case was finally about to come to trial when the state settled. The settlement terms require NY to: reform its assessment procedures that determine whether people with mental illness can benefit from community integration; use independent assessors instead of state employees to conduct the assessments; and move "everyone who qualifies", presumably based on the new independent assessments, from nursing facilities into "the community", over three years. The state says it will create about 200 "supported housing" units for inmates as a result.

Advocates noted that 200 is not enough, and the Times article implied that congregate housing with several unrelated people living in the same apartment would be permitted. Such housing is not allowed by the judge's order in DAI v Paterson, a case in which NY was ordered to move about 4500 people with mental illness from adult "homes" to supported housing within 3 years.

A state official described as "a counselor to Governor Cuomo" told the Times the state settled because "it just jibed with our kind of policy viewpoint—care for the vulnerable, into the community, using money appropriately." This raised the question of why Cuomo is continuing to appeal the DAI v Paterson case, which certainly also "jibes" with that "policy viewpoint".

Bloomfield v DOH

According to a press release issued by MFY Legal Services, Inc., on November 10:

"Norman Bloomfield, a 64-year-old resident of the Surf Manor Home for Adults in Brooklyn, filed a class action lawsuit on behalf of all residents of adult homes in the New York City metropolitan area, charging that the NYS Department of Health's complaint procedures violate the ADA, the state's Constitution and the Administrative Procedures Act.

'The consensus among residents is that their complaints are not addressed,' says Mr. Bloomfield. 'Nine residents have died this year, there are outbreaks of bed bugs and scabies, the facility is in serious disrepair. The inspectors' response is always "give the administration more time" or "they're trying" when residents are bitten by bed bugs every night. No one should have to live like this. What's more, the Department is not doing anything about complaints it has substantiated which affect residents' health and safety.'

DOH has failed to enforce its corrective action orders or failed to issue violations against the home even when investigators found that Surf Manor infringed on residents' rights and safety or failed to remedy previous violations. Department regulations do not require inspectors to speak with a resident who makes a complaint, but give adult homes opportunities to appeal those violations through closed- door, off-the-record proceedings. Residents are not given notice or an opportunity to be heard in those proceedings.

'The Department has repeatedly told adult home residents that they have no rights at stake in these processes even when residents' health and safety are at issue,' said Barbara Graves-Poller, an MFY attorney who represents Bloomfield. 'The truth is that the Department has simply decided to disregard residents' rights for the sake of protecting operators' profits.'

Bloomfield claims that denying disabled residents participation in that process violates the ADA, and that DOH has failed to officially promulgate its appeal rules and abuses its discretion in ways that allow adult home operators to violate residents' rights with virtual impunity."

Autism Insurance a Reality

At long last, New York State has a law requiring private insurance companies to cover autism-related services. On November 1, 2012, NY will become the 29th. state to have such a law.

The law is a compromise; it only requires insurance plans to pay for a maximum of $45,000 per year for "applied behavior analysis". This runs against the spirit of recent health insurance reforms on the federal and state levels that require "parity" between mental health and physical health services. However, this is a rather narrow limitation.

The bill requires coverage of screening, diagnostic, and treatment services for conditions on the "autism spectrum", and prohibits insurers from terminating plans or denying coverage for other services because the recipient has an autism spectrum disorder. The treatment services include assistive communication devices; "behavioral health treatment" and psychiatric and psychological care; medications; and ordinary medical care. It also requires coverage of speech therapy, OT, and PT, if the plan covers those services generally.

The $45,000 limit will be adjusted each year for inflation, and applies only to "applied behavior analysis" (ABA). ABA is a blanket term that includes both good and bad things. "Positive behavioral support" is a form of ABA; it involves giving a person meaningful activities in ordinary integrated settings, and reinforcement for taking part in them, so they have something better to do than engage in harmful behaviors. In other words, it means giving a person a real life.

It has been reported that coverage is limited to so-called "evidence-based" treatment, but that term does not appear anywhere in the law. Coverage is limited to medically necessary treatment provided by licensed professionals. "ABA" is only one category of "behavioral health treatment" covered by the law. Also covered are counseling and just about anything else that a licensed mental health practitioner does, and those things are not subject to a dollar limit.

The law, by preventing people who have private health insurance from having to seek payment from Medicaid for autism-related services, will save NY taxpayers around $2 million annually.

Super Committee Behaves Predictably

As we predicted, the Congressional Super Committee that was charged with coming up with $1.5 trillion in cuts to federal spending over ten years failed to do so. Despite also-predictable right-wing propaganda to the contrary, the Democrats on the Committee tried to compromise. They proposed deep and painful cuts to Social Security, Medicaid and Medicare, in return for which they wanted to close tax loopholes that benefit the very richest Americans and corporations. The Republicans refused to compromise; they were unwilling to require the richest people on the planet to pay a penny more in taxes.

This means that automatic cuts to military spending and things other than Medicaid, SSI, food stamps and veterans' benefits, and a cap on Medicare growth to 2% a year, will be "triggered" beginning October 1, 2012. Except, of course, that between now and then Congress and the President can do something completely different, including repealing the law entirely.

Republicans aren't the only people playing fast and loose with the facts in this debate. Obama's Defense Secretary, Leon Panetta, has been spreading falsehoods about the danger of the military cuts that would be triggered. Panetta claims the cuts would "hollow out" the military and put US security at risk. The cuts would amount to 17% of total Pentagon spending, and would take place after we are completely out of Iraq and are winding down our involvement in Afghanistan. The US has weathered much larger military cuts in the past, after World War II, Korea, and the end of the Cold War. Together Presidents George H.W. Bush and Clinton cut military spending by 25% after the collapse of the Soviet Union. The resulting US military handily defeated enemies in the Balkans and rolled over Saddam Hussein's army, the fourth largest in the world, like a "speed bump", in one analyst's memorable phrase. Military cuts are not a partisan issue; Lawrence Korb, who as Assistant Secretary of Defense under Republican Ronald Reagan oversaw that President's massive military buildup, called Panetta's claims "nonsense".

Medicaid and other programs important to people with disabilities remain on the chopping block, of course. Still to come are the budget debates on what "the first trillion" in cuts over ten years, also part of the debt reduction law, will look like. We believe that just like the Super Committee, Congress will be unable to agree on a comprehensive budget including these cuts. Instead, there will be a series of continuing budget resolutions, and the first one will happen before the November elections, when Obama will be under enormous pressure to cave on Medicaid cuts.

Americans, like billionaire Warren Buffett, overwhelmingly believe that the wealthiest Americans are not paying their fair share of taxes and that loopholes for them and for corporations should be closed to help balance the federal budget. If we do that, end Medicaid's institutional bias, and tie the Medicare eligibility age to lifespan data so it increases over time, the deficit can be covered without cutting any services that people with disabilities need to be as independent as possible in the most integrated settings. But a small minority of far- right-wing anti-tax fanatics are ignoring the wishes of the American people, and the money their corporate supporters are giving them is what enables them to hold our government hostage.

It is necessary to keep delivering our message forcefully to our national leaders. See End Corporate Control of Our Government! for some ways you can help. Also, if you are part of the "Occupy" movement, please focus on taking the next steps: targeted legislative demands for fair tax policy, and an occupation of Congress.


Hometown Holiday Light Festival Cancelled

One of the many places devastated by last summer's flooding was Otsiningo Park in Binghamton. The park was covered by several feet of corrosive Chenango River water for a long time. Much of the park's electrical infrastructure was damaged or destroyed. Repairs will take many months, or even years, if appropriate funding comes through.

Since our Light Festival fundraiser relies extensively on the park's electricity, we cannot hold the event there. Unfortunately, there was no other suitable location in the area that could be made ready for the event in the short amount of time available. We regret to announce that the Hometown Holiday Light Festival is cancelled.

Haunted Halls Horrify Hordes

Our second Haunted Halls of Horror event was a record-breaker in many ways. At 7500 sq. ft. of terror, it was twice as large as last year. More than 150 volunteers helped out as builders, "scare- actors", escorts, and ticket and refreshment sellers. We had over 2000 attendees and netted (after all expenses) around $20,000!

We'd like to thank all of our volunteers and sponsors for making this event a huge success. You truly exemplify community support.

Next year we'll be back to scare you again, with more and better frights!

Self Help

Blood, Toil, Tears and Sweat:
Thank you Winston Churchill, Sam Rayburn, and Arlo Guthrie

By Sue Ruff

"I say to the House as I said to ministers who have joined this government, I have nothing to offer but blood, toil, tears, and sweat. We have before us an ordeal of the most grievous kind. We have before us many, many months of struggle and suffering." These were the words that were uttered by Winston Churchill as he became Prime Minister of Great Britain in 1940. His people faced terrible times. The week of September 18 was an awful, awful week in the Southern Tier of NY. 20,000 people were evacuated from their homes by raging flood waters. It's estimated that more than 1000 homes were swamped in Owego. Areas of Johnson City, Endicott, Apalachin, Vestal, Conklin, and Binghamton that had been spared in 2006 were devastated. People who rebuilt after the flood of 2006 again lost homes and businesses. The streets of our community were littered with the possessions hauled from these homes and businesses. Everything was covered with an ugly, toxic, grey mud.

The trip to Washington in September to demonstrate with other people with disabilities from across the country was the culmination of a year's work on fundraising and planning. Southern Tier ADAPT members looked forward to it with great anticipation. Not only would a small group be going for several days, we had organized forty people from central NY to get on the rally bus at an unspeakably early hour. And then the flood came and changed all our lives.

Our gold colored T-shirts proclaimed, "My Medicaid Matters" and pictured the "Free Our People" logo of ADAPT over a flag of our country in the shape of the USA. For those unfamiliar with the logo, it shows a stick figure in a wheelchair breaking chains over his head. Churchill's famous words inspired his nation as the people faced the horrors of a growing war that seemed poised to take over the world. While we usually head to DC with light hearts, this time we carried pain on our backs. All of us had been working with flood victims and some of us lost so much. Believe it or not, there was a FEMA office in our hotel in DC. As we left behind the remnants of a terrible natural disaster, we could foresee another terrible natural disaster coming our way. I don't think we will be able to turn to FEMA for this natural disaster when it comes. In some states it has already arrived.

We know that Medicaid is threatened. Medicaid has meant freedom and the right to live in our own homes. Some states have abused it and used it to fund costly institutionalization. Some CEOs have made themselves very wealthy. But the people who will become the victims of cuts or caps are our brothers and sisters, parents and children, neighbors and friends, and ourselves.

The ADAPT bus from Rochester came to pick us up Saturday morning. We met them in the parking lot of Wegmans. A week before, that lot was under water. Death and illness are so close. Susie, the heart of our group, was not able to come. Darlene, the voice of our group, was not able to come. Jon (our eyes), Bob (our logical brain), Tina (our strength), and I (the somewhat obsessive-compulsive organizer) got on the bus. Our friends from Rochester ADAPT welcomed us and extended their deepest sympathy.

On Monday, September 19, 54 people were arrested for unlawful entry of two offices in the Cannon House Office Building. We were taken to the basement of the Rayburn House Office Building, as it was available and the police could park us there while processing the arrests. A little history always puts things into perspective.

The Rayburn House Office Building is named for Samuel T. Rayburn ("Mr. Sam"), a Democrat from Bonham, TX. Mr. Sam served as the Speaker of the House of Representatives for seventeen years, longer than any other man. Mr. Sam claimed never to have taken payments from certain clients of his law firm. As quoted in Speak, Mr. Speaker, by H.G. Dulaney & Edward Hake Phillips, he said, "I was a member of the Legislature, representing the people of Fannin County, and . my experience had taught me that men who represent the people should be as far removed as possible from concerns whose interests he was liable to be called on to legislate concerning, and that on that ground I would not accept a dollar of the railroad's money, though I was legally entitled to it. I never did take a dollar of it. I have been guided by the principle in all my dealings." Imagine that? An honest politician. And Mr. Sam always paid his own expenses. He had a habit of inviting legislators to evening gatherings to quietly build coalitions. Not only was he accessible to members of the House, his constituents were welcome to visit him at his home in Bonham without appointments. His strong support for building Rt. 66 from Chicago through the South to California had the result of connecting "the Frost Belt with the Sun Belt." Speaker Rayburn said, "A jackass can kick a barn down, but it takes a carpenter to build one."

Know any good carpenters today in Washington? While being parked in a basement for 12 hours was very stressful, it was an honor to be in the basement of the building named for Mr. Sam.

Last night the words of Arlo Guthrie's song, "Alice's Restaurant," kept swimming through my head. Forgive me for my sarcasm and plagiarism, please, in the description below.

We thought it would be "a friendly gesture" to visit Representative Camp, as he sits on the Super Committee (that small group of politicians that might have decided on our freedom and lives). So we took people and wheelchairs and loud voices and entered his office suite. On a high shelf near his receptionist is a box of Frosted Flakes with the Congressman's picture on the front. Chris H. read our statement and we took to chanting, "Defending our Medicaid, no more cuts."

Pretty soon we were interrupted in our chant by Officer DC, who said, "Kids! You gotta leave this office because you are not welcome and you are making too much noise." Well we really wanted to see Congressman Camp and we would have made room for him to come back into his office, but he must have been busy doing Super Committee stuff somewhere and we were issued three warnings to leave. We didn't. Leave, that is.

Now friends, there was only one or two things Officer DC coulda done at this time, and the first was he could have given us a medal for being so brave and honest about defending the lives of people with disabilities, which wasn't very likely, and we didn't expect it, and the other thing was he could have bawled us out and told us to never again come to Congressman Camp's office without an appointment, which is what we expected, but there was a third possibility, and we were all immediately arrested.

Since this was the biggest crime scene of the day, a whole lot of officers arrived and everybody wanted to get in the ADAPT action report about it. And they were using up all kinds of cop equipment that they had hanging around. They were taking still photos and video of all the ADAPTers before they put on the handcuffs. They probably took pictures of the approach, the door, the northwest corner, the southeast corner, and even overhead shots. We were handcuffed with not really flexible plastic cuffs (unless you needed your hands to operate your wheelchair or use your cane or be someone's attendant).

And then we were escorted, walked all around, up and down in elevators and through corridors until we arrived at Mr. Sam's basement. Officer DC said, "Kids! I'm gonna put you in this back corridor near the five foot thundering fan that blows stale air around, but first I want all your possessions put here in these plastic bags." And some of us said, "Well, sir, we can understand you taking our wallets so we don't have any money to spend down here, but why do you want our shoe laces?" And he said, "Kids, we don't want any hangings." We said, "Officer DC, do you think we would hang ourselves for unlawful entering?" Officer DC said he was just making sure.

So for the next sixteen hours we were inspected, detected, neglected, dejected, rejected and had to go through all kinds of mean, nasty ugly things. But we got to know each other. And we got to talkin' about the crime of civil disobedience and the times some of us had been arrested in the past and why. Some of us really needed a cigarette and some of us really wanted to share a beer with each other. All of us wanted to lie down and just get some sleep. Some of us needed our medications and didn't get them. But then Officer DC came over and said, "Kids, these-pieces-of-paper's-got-47-words-37-sentences-58-paragraphs-we-wanna-know-details-of-the-crime-time-of-the-crime-and-any-other-kind-of-thing-you-gotta-say-pertaining-to-and-about-the-crime-I-want-to-know-arresting-officer's-name-and-any-other-kind-of-thing-you-gotta-say", and nobody understood a word that he said because the fan was very loud, the sign language interpreter had gone home hours before, and every new officer who came by said something different about the forms.

And then it was my turn to get the last thumb print and to sign the citation release paper. I was getting surly but my new ADAPT friends said, "stay calm, we're almost outa here." Officer DC handed me the pen and said, "sign right here that you understand that you are to come back here on October 18 to stand before the judge." And I said, "But officer, I can't hold the pen with these handcuffs on." And he said, "Do the best you can." Well, that's what I did. I did the best I could. I stood up for my loved ones.

And friends, somewhere in Washington enshrined in some little folder, is a study in black and white of my fingerprints. And the only reason I'm telling you this story now is cause you may know somebody in a similar situation, or you may be in a similar situation, and if you're in a situation like that there's only one thing you can do and that's walk into this House basement with your fellow arrestees and sing along, "You can get anything you want in Sam Rayburn's basement halls." You know, if one person does that they may think he's sick and they'll let him go. And if two people, two people do it, in harmony, they may think they're both really crazy, and they'll let both of them go. But if 54 people do it, they may think it's an organization. Could you imagine 54 people a day walking into the offices of members of Congress and chanting "Defending our Medicaid, no more cuts!"? Well, then they might think it's a movement.

And that's what it is, folks, the Sam Rayburn Basement Halls Medicaid Movement, and all you gotta do to join is sing it the next time it comes around, with feeling, and here it comes:

"You can get anything you want in Sam Rayburn's basement halls You can get anything you want in Sam Rayburn's basement halls Walk right in, it's around the back, Just about a mile from the White House track, You can get anything you want in Sam Rayburn's basement halls."


A few days before we were to appear before the judge in DC, the charges against all 54 people who had been arrested were dropped.

Churchill ended his famous speech, "But I take up my task with buoyancy and hope. I feel sure that our cause will not be suffered to fail among men. At this time I feel entitled to claim the aid of all, and I say, 'Come then, let us go forward together with our united strength.'"

Prep for Disasters

By Jane Long

Recently there have been a variety of natural events that have left a lot of people feeling lost and isolated. We've had power outages, wind storms, floods, even an earthquake, and soon winter weather will bring downed tree branches, blizzards, and slippery roads. There are ways we all can be better prepared. We cannot always expect someone to help us. We have to take some responsibility to prepare ourselves. Here are some thoughts about preparing ourselves for the next natural disaster.

Be informed. With the internet, the newspaper, and with television, make a daily habit of keeping up to date on the LOCAL weather, and the LOCAL news. We have wonderful technology, and good systems of predicting troublesome events, but if we only use the television for cable or satellite stations and never watch our own local news and weather, we are not informed about what is happening near us. If we only use the internet to tweet, email, Facebook or play games, and never check local broadcasts' websites or the newspaper site, we miss another opportunity to be informed and prepared.

Be aware. Once the electrical power is out, whether from a flood or storm or tree limbs falling on power lines far from our home, all the wonderful technology (television, radios, computers) won't help us. Even our cell phone will be limited if the carrier's cell towers are affected or after the battery dies. (Editor's note: The most reliable form of telephone service is land-line phone service with a standard—not wireless electric—phone. You can still get these things, and there is no substitute for them in an emergency. If you are a person who cannot easily get out of your house, then you absolutely need these things and should have them.) It is difficult to understand how much we depend on electricity until we've lost our power for several hours. Our heating or cooling systems that keep us comfortable will not be working. Our food in the freezer and refrigerator will only last a limited time without power. The microwave won't work. The electric can opener won't work. Think about this and be aware.

Be proactive. Did other people receive a reverse 911 call warning them and you did not? Find out why. Call your local municipality, landline phone carrier, or cell phone carrier and ask how to be placed on a reverse 911 call list. If you have special needs, let them know. With some providers, you might be given a choice of being informed by text message or voice. Remember to update the providers if you move or change your phone number.

Be a good neighbor. Most of us have become so isolated in our own homes that we often do not know who lives near us. If you have special needs, do you have a buddy or person nearby who will check on you? If not, it may be time to talk this over with someone. Consider your neighbors: after the September flooding, travel from one neighborhood to another was impossible, so neighbors became important. Do your neighbors know you? Do you know them? Is there someone in your neighborhood who would benefit from your help? Maybe you can create a partnership with a neighbor, e.g. "I will watch out for you, if you watch out for me."

Check your local Red Cross office or website or call for a brochure that will help you prepare yourself for any unfortunate events. They have information about what documents or papers you should keep in a safe place, how to care for your pets, and many, many other details we never would have thought about until it is too late.

Don't wait. Prepare now to be safe.

Winter 2012
Issue No. 105

People First, Integration Last?
AccessAbility Masthead
Commissioner Burke Visits STIC
Courts Watch
End Corporate Control of Our Government!
Managed Care: Seamless or Seamy?
OPWDD Scandal Expands
Super Committee Behaves Predictably
Haunted Halls Horrify Hordes
Hometown Holiday Light Festival Cancelled
Blood, Toil, Tears and Sweat: Thank You Winston Churchill, Sam Rayburn, and Arlo Guthrie
Prep for Disasters