Road Trip

by Maria Dibble

Thirty years ago I began a journey that has moved over many types of terrain. I've traveled roads that were smooth and level, rough and rocky, steep and muddy, zig-zagging and curvy, and many others that I'll leave to the imagination. Along the way I encountered sheltered workshops, nursing "homes", group "homes", developmental and psychiatric centers, structured day programs, and many other configurations designed to "protect" people with disabilities, as they stifled independence, choice and free will. Of course I also discovered some excellent programs that promoted people's rights and assisted them to achieve their freedom and live the lives they chose. Some were independent living centers, others legal rights organizations, and, more rarely, very innovative agencies that worked diligently to establish creative alternatives to institutions.

STIC's vision, which has often seemed like an unachievable dream, has been for a barrier-free world where people with disabilities lived, worked and socialized in fully integrated settings. In fact, people would be such full participants in their communities that the words "integration" and "segregation" would disappear from the vernacular.

Take out all my rhetoric, and what it comes down to is that for all of our 30 years we have aggressively advocated for real community services, and closure of sheltered workshops, group "homes" and other segregated programs/settings. We put our money where our mouth is too, by offering alternative programs that are individualized and person-centered, respecting people's choices and helping them to achieve their goals. We provide one-on-one habilitation services, service coordination that works with people who want independent lives in the community, and supported employment that finds real, competitive jobs for people with all types of disabilities. We don't cheat, either, by using "enclaves" and calling it "integrated".

We've demonstrated through our actions and services, and through the data collected from other such successful programs, that integration provides a higher level of safety for people, as well as a much improved quality of life. We responded to proposed regulations, laws, etc. by repeating the litany of equality, independence, integrated services, and advocacy over and over again. Occasionally, a slight flicker of hope would flare up, but then usually die again. Officials would talk the talk about "choice" and "community-based services", but they seldom if ever walked the walk. When they did walk, they were such baby steps that most people living today couldn't have achieved their dreams.

Then a few years ago, scandals of abuse and neglect of people with developmental disabilities in group homes and developmental centers hit the pages of the Poughkeepsie Journal and New York Times, and very sadly, all the things that we said would happen when people with disabilities were secreted behind closed doors, were proven to be true. Believe me, this was not an "I told you so" that gave me any pleasure, not when it was at the expense of human beings.

Soon after, things began to change, with NYS Office of People with Developmental Disabilities (OPWDD) Commissioner Ritter leaving, and Courtney Burke taking her place. The new Commissioner was faced with huge challenges. She was tasked to clean house, train staff and ensure that abuse and neglect were reduced/eliminated, as well as with reforming the OPWDD system. She had to implement a vision that included closing developmental centers, Intermediate Care Facilities (ICFs), and group "homes", and increasing employment opportunities for people with developmental disabilities.

I'm pleased to say that she has been very much up to the challenges, all of it coming to fruition with an announcement on April 1, 2013 of a "Draft Transformation Agreement" with the federal Centers for Medicaid and Medicare Services (CMS) that lays out a plan for downsizing segregated living situations and strengthening self-direction and person-centered planning. It includes stopping new admissions to sheltered workshops by July 1, 2013, and eventually closing workshops completely. April 1 is my birthday, and this agreement was the best present I could have received.

The agreement isn't perfect, and it still has room for improvement, but it is a great beginning. Not only does it include many of the goals that STIC has worked for over the last three decades, but it also provides timelines for achieving them. STIC could have written this draft agreement, and we are pleased with its scope and direction.

Perhaps not so surprisingly, there are many who are refusing to support Commissioner Burke's efforts, and some who have actively vowed to oppose OPWDD's "Road to Reform". They are operators of segregated residential and day programs who see the lucrative payments they've received shrinking to much lower rates for integrated individualized services, eroding their bottom lines. They are angry because they have invested money in "bricks and mortar" (group "homes", etc.), and now they feel they are being left holding the bag.

The writing has been on the wall for the last few years, however, and the direction of OPWDD's People First Waiver has been there for all to see, if they chose to look. These providers buried their heads in the sand hoping that OPWDD would come to their rescue as they've done so many times before. So at the expense of the promise of new lives for consumers, they protest the changes, screaming to maintain the status quo. While I can have some empathy for their financial plight, I cannot feel any sympathy for their strategy to oppose the new model for service delivery. I urge these providers to embrace the changes, develop a plan for divesting themselves of their buildings, and begin to walk with their consumers along this new road. It will be difficult at first, but I'm betting the rewards in the end will be worth it.

I don't mean to paint every provider with the same brush. I'm associated with many agencies, through my participation in iCircle, which have come out in support of Commissioner Burke's efforts and are already moving forward to implement reforms. I acknowledge that for some of them it won't be easy, but I applaud them for putting their consumers' interests before their own.

So how does the terrain ahead on the Road to Reform look? Well, it has pitfalls, some major bumps and slopes, but it is much less steep, much smoother, and leads eventually to a level and very accessible plateau.

Will we get there? The people who are opposed to this have a lot of money behind them and they are very capable of successfully lobbying lawmakers to get their way. Commissioner Burke needs your support, and your legislators need to know that you support her. Your voice will speed the journey, so please speak up.

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NEWS & ANALYSIS

TRANSFORMERS

In April, the New York State Office of People with Developmental Disabilities (OPWDD) released a truly remarkable document. "Health System Transformation for Individuals with Developmental Disabilities", also known as the "Draft Transformation Agreement", finally commits the state to make measurable—and big—changes in how services are provided.

How big? For example, New York State:

· will stop admitting new people to sheltered workshops on July 1, 2013.

· will submit a detailed plan to downsize and close workshops by January 1, 2014.

· must transfer at least 30% of people from two closing developmental centers to residential settings housing 4 or fewer people by January 1, 2014.

· must submit a plan to transfer people from remaining DCs and "community ICFs" by October 1, 2013.

· will offer self-direction to all people served under OPWDD's People First and DOH's NYS Partnership Plan Medicaid waivers.

This could be a massive victory in the decades-long struggle of New Yorkers with disabilities to achieve real systemic reform.

The Transformation Agreement is a set of requirements imposed on the state as a whole, and on OPWDD and the Department of Health (DOH) in particular, by the federal Centers for Medicare and Medicaid Services (CMS) during negotiations over three new or amended Medicaid waivers. They include OPWDD's two People First waivers and DOH's amendments to its NYS Partnership Plan waiver.

The agreement appears in the DOH amendments. OPWDD has a PowerPoint presentation called "Update: The Transformation Agreement" on its website. There are some differences between these documents (see links below). One of the most interesting concerns targets for moving people from segregated to more-integrated residential settings.

The agreement itself says: "By January 1, 2014, New York will transition a total of 148 residents from the Finger Lakes and Taconic [developmental centers already targeted for closure] in accordance with the following milestones: 7 residents will be transitioned prior to July 1, 2013, 20 additional people transitioned by October 1, 2013, and the remaining 121 .... by January 1, 2014..." All of them must be moved to "community-based settings" that meet the new definition of that term proposed by CMS. That means much more choice and privacy in, and control over, those settings than nearly all current so-called "community-based" residences allow (see AccessAbility, Summer 2012 and Fall 2009, for details). Moreover, OPWDD is required to use that definition even though the new regulation has not been finalized (and may never be in its current form).

OPWDD's "Update" says these residences all must have four or fewer residents, but that is not in the actual agreement. The agreement says that at least 30% of the total, or 44 people, must move to such smaller settings. ("Four or fewer" is required by the federal Money Follows the Person (MFP) grant program, under which DOH is seeking funds for OPWDD; see below.)

Another important change is the requirement to increase availability of self-directed services. Currently OPWDD's only self-direction option is "Community Supports and Services" (CSS) under the Medicaid Waiver (the new "Front Door" initiative hasn't really rolled out yet). CSS can be very useful, but it's notorious for its difficulty to navigate and, as a result, is not used by many people. OPWDD's People First waiver plan required the new Developmental Disabilities Individual Support and Care Coordination Organizations (DISCOs) to offer self-direction to all participants, but that's about as much detail as we had. Until now. The agreement requires NY to increase the number of people who are self-directing their services by 1,245 by March 31, 2014. "Self-direction" is defined as offering people with disabilities or their designated representatives the option to have either or both "employer authority" and "budget authority" over how services are managed. "Employer authority" means the person or representative "fully controls the recruitment, training, hiring, discharge performance review, performance pay increases, and supervision of" people serving them. "Budget authority" means "decision-making authority over how funds in their individualized budget for waiver services are spent." And self-direction isn't just to be offered to OPWDD consumers; it's for everybody in Medicaid managed care.

There's more detail on employment too. Along with the sheltered workshop items, NY must show an increase of 700 people in supported competitive employment by March 31, 2014. "Only integrated gainful employment at minimum wage or higher will be considered competitive employment."

Some other items in the agreement could be very good, but they are described too vaguely for us to know for sure. Among these is a requirement that DISCOs provide "conflict-free case management" (OPWDD Update); that NY must have an "independent process for assuring that individual person-centered plans meet the needs of enrollees served in community-based settings" (Draft Agreement); and that DISCOs "do not determine eligibility and process enrollment" (OPWDD Update). We don't think this adds up to genuine third-party needs assessment, which we continue to call for. OPWDD is required to provide a detailed description of how it will achieve theses things, though, so when we see that we'll tell you what's in it.

Another new federal grant that the state is applying for is the Balancing Incentives Program. This program will give NY Medicaid matching funds if it raises its total percentage of "Medicaid medical assistance expenditures on non-institutionally based long-term supports/services" above 50% by October 1, 2015. It can only use the extra money to create new or expand existing "home and community-based services", and can't use any of it for "nursing home capacity building".

Unstated in these documents, but implied, is the notion that this is just the beginning. OPWDD is required to provide detailed plans on how it will meet some of these requirements. We hope the plans will show how the trend toward integrated individualized services will continue over time. But we must note that some of these early deadlines are only for submission of plans, not achievement of goals. There is no explicit requirement to implement the plans.

On the other hand, some of the goals are extremely ambitious. Achieving them in the next 6-9 months would require a wholesale turnaround in the operations of many service providers, as well as major changes in how OPWDD funds services. Right now, for example, STIC has a long waiting list of people who are eligible for, but can't get, habilitation services because OPWDD won't fork over the dollars. There are still huge shortages of respite services. Both of these services are critical to supporting people in integrated settings. And many local providers of employment-related services are allowed to "cream"—that is, reject people with high needs or who are considered difficult to serve. There appears to be a disconnect at OPWDD between the people who are promoting these changes and those who are running the current programs. In order for this to work, three things must happen:

1. Much more money has to flow to existing integrated services to handle the exploding demand that these goals will create. That has to start now. No more admissions to sheltered work on July 1 (as you read this, in about 2 weeks) means providers of integrated alternatives must have been given commitments by the state that they will get paid to serve the people who would have been sent to workshops on that date, and that includes a lot of people who will "age out" of public education all at once at the end of the school year.

2. Outreach to build capacity must be intensive. OPWDD needs to send representatives to every service provider it can find—not only current OPWDD service providers but those who serve people with physical disabilities, brain injuries, and senior citizens—to convince them to create new integrated support services, for people who need: housing setup, including intensive service coordination to set up shared living situations; job exploration and/or volunteer opportunities; services to connect people with and without disabilities who have shared interests to develop supportive social relationships; and personal assistance and/or supervision so that family members who need to go to work aren't facing care crises. And that includes being ready to issue startup funds as soon as expedited contracts can be signed. If OPWDD sent out an army of people to do this tomorrow, the services wouldn't begin to be online for at least 9 months.

3. Existing providers must be forced to accept anyone who meets the state's eligibility criteria for a service, regardless of how "hard to serve" they are, as long as the money flows to serve them.

Despite the promotional efforts of some OPWDD officials, we don't see any evidence that these things will happen any time soon. So, perhaps, despite the tough language in the agreement, behind the scenes CMS, OPWDD and DOH have a "gentlemen's understanding" that failure is an option. We think it's good to put heavy pressure on state agencies and dawdling providers to make change happen; after all, the changes were first mandated pretty clearly by the US Supreme Court's Olmstead decision back in 1999. However, it will be disastrous if this agreement turns out to have no teeth; the reform effort would lose all credibility with providers and advocates. So you may be surprised to hear us say that we won't complain if the final version has somewhat more modest, but realistically achievable, goals and deadlines.

Meanwhile, questions and objections have been raised by advocates as to whether the existing state MFP program funds will be diverted to OPWDD; the existing program is supposed to focus on getting non-OPWDD people out of nursing facilities, a project that is already underfunded and needs to continue. (STIC currently has a nursing facility outreach program funded by MFP.)

We keep hearing that OPWDD officials are telling providers that there is no turning back. In the past, OPWDD published a lot of feel-good "vision" and "goal" stuff, but did not require providers to change what they do and did not stop helping them expand segregated congregate programs. Now, though, providers have been told that they need to get in line with meeting these objectives, and they should not expect any guaranteed "back-fills" for their segregated facilities.

This, as Samuel Johnson might have said, has, like the prospect of being hanged, concentrated their minds wonderfully. At various meetings with OPWDD officials some providers have put on impressive displays of rage and defiance. This would be comical if they didn't have such big funding reserves and powerful lobbyists behind them. It is very possible that they will succeed in frightening, if not OPWDD Commissioner Courtney Burke, then higher-level Cuomo Administration officials and/or state legislators into backing down. Advocates need to be alert and vigilant, and express support for these changes to state officials at every opportunity.

There's a lot more in these documents than we can fully cover here. If you want the full scoop, here's where you can get it:

OPWDD "Update" PowerPoint: www.opwdd.ny.gov/people_first_waiver/joint_discussion_board_provider_vcon_updates/Transformation_Agreement_4-9-13

DOH Attachment H "Draft Agreement":

www.opwdd.ny.gov/opwdd_about/commissioners_page/04012013_partnership_plan_stcs_attachment

And here's where you can let Courtney Burke know that you've got her back:

Send email to:

People.First@OPWDD.ny.gov

Or call the People First Comment Line at:

(866) 946-9733 (voice)

(866) 933-4889 (TTY)

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Courts Watch

Health Insurance Runs Amok: NYSPA, et. al. v. United Health Group

This class action suit was filed in federal district court in NY in March 2013, by the New York State Psychiatric Association (NYSPA). The plaintiffs say that United Health Group regularly violates state and federal mental health parity laws, NYS insurance regulations, and the federal Affordable Care Act, by imposing limits on mental health coverage that it does not apply to coverage for physical health issues.

United Health Group administers many insurance plans across the nation, including the Empire Plan in NY, which covers state workers and employees of many organizations that get state funding. United also oversees "self-insured" health plans for large private employers.

United appears to be prejudiced against the use psychotherapy to treat mental health conditions, regardless of whether it is used along with other forms of treatment, such as medication.

Significant mental illness often, but not always, responds to medication. Drugs do not "cure" mental illness and often serious symptoms remain even when medication produces improvement. Many people with significant mental illness need ongoing psychotherapy to understand their condition, cope with symptoms and drug side-effects, and stay motivated to keep taking the medication. This has been clearly shown by scientific research, and United's own promotional materials and procedural guides say so.

Yet United allegedly applies illegal pre-authorization requirements and service limits to psychotherapy, refuses to fully explain, or falsely describes, reasons for coverage denials, and follows illegal procedures regarding appeals.

According to NYSPA, United routinely denies coverage for intensive psychotherapy (more than one session every 1-2 weeks) for people who are actively suicidal or frequently hospitalized.

For example, a person who needed 2 weekly psychotherapy sessions was only allowed 2 per month due to "undisclosed quantitative limits on coverage for outpatient mental health care". In another case, although the rules of the CBS plan run by United clearly say that psychotherapy is covered, subject to post-treatment review of medical necessity, United suddenly cut off all coverage for future psychotherapy sessions for a person who used that service a lot.

United allegedly allows its staff who initially deny coverage to decide on appeals of those denials, in violation of insurance plan rules and state and federal laws. In second-level appeals, the company has refused to respond directly to very specific medical evidence and detailed legal arguments describing United's violations of law. Instead, such appeals are often met with a brief letter simply restating the denial of coverage. This creates the impression that the company doesn't consider the substance of these appeals at all.

NYSPA also says that United frequently denies coverage for out-of-network mental health services on grounds that the provider failed to respond to requests for information from United, requests that the provider never received.

The Empire Plan covers services by out-of-network providers at a reduced rate. United, in overseeing this plan, allegedly requires pre-authorization of mental health services from non-network providers, in violation of New York State regulations.

United also excludes out-of-network inpatient mental health services but covers out-of-network inpatient physical health services.

Under Empire, United has a stricter definition of "medical necessity" for mental health services than for physical health services. For mental health, it requires that services must: "have a strong likelihood of improving [the patient's] condition"; be "in accordance with generally accepted mental health and substance abuse practices and the professional and technical standards adopted by [United]"; and "must be consistent ... with scientifically based guidelines of national medical research or health care coverage or organizations that are accepted by [United]". The latter two conditions let United decide completely on its own what is medically necessary, and reject any or all scientific data in making such decisions. United doesn't require any of this for physical health care. Physical health care can be delivered to maintain or prevent deterioration in the person's condition, and only must comply with generally accepted science-based standards. These differences clearly violate mental health insurance coverage parity laws.

Unfortunately, in discussing United's different coverage rules for in-network vs out-of-network inpatient services, the lawsuit appears to argue that requiring use of the most integrated setting for people with mental health disabilities is an illegal "fail first" or "step therapy" approach to treatment. The federal mental health parity law prohibits requiring such practices for mental health services by insurance plans that do not also require them for physical health services. The cases cited in the complaint do indicate that people were denied coverage for residential treatment even though they were clearly an immediate danger to themselves or others, which would be wrong. And of course, requiring step-therapy for medication when the doctor knows that the lower "steps" won't work, is always wrong.

But the notion that requiring the most integrated setting to be tried first for any mental health condition that doesn't create an immediate serious danger to the patient or others, is a discriminatory form of "step therapy", is medically wrong. Although the Americans with Disabilities Act (ADA) specifically excludes insurance underwriting practices from its reach, making such an argument in this case violates the spirit of the ADA and the US Supreme Court's Olmstead decision. It is sad that a lawsuit seeking to stop outrageous illegal behavior by one of the nation's biggest insurance companies could end up creating a dangerous legal precedent that undermines the civil rights of the people it is trying to protect.

At press time there was no information on when the judge would hear the case.


Solitary Crimes: Peoples v Fischer

This suit was originally filed by the NY Civil Liberties Union on behalf of a single prisoner, Leroy Peoples, in NY federal district court in December 2012. In March 2013, it was expanded to a class action suit. Peoples and two other plaintiffs allege, on behalf of all people in NY State prisons, that NY, by "policy and custom", violates the 8th. and 14th. Amendments to the US Constitution in its use of solitary confinement to punish minor infractions in prison.

According to the complaint, "as of January 2012, approximately 14% of the individuals confined in [isolation rooms called Special Housing Units or] SHU were on [the State Department of Corrections and Community Services, or] DOCCS' mental health caseload; 35% of these individuals had been diagnosed with a serious mental illness." This continues to happen despite the "SHU Law" passed a few years ago that requires DOCCS to divert people with the most severe mental health disabilities from SHU into residential mental health treatment programs.

Mental health authorities regard long-term isolation as harmful for anyone; it is known to cause severe and persistent mental health problems even in healthy people. They recommend that it never continue for longer than 15 days and that it only be used as a last resort to control people who pose an immediate danger to others.

Yet NY prisons routinely isolate people for trivial infractions such as "smoking too much", littering, or having "unauthorized literature". These isolation periods are often much longer than 15 days, and back-to-back isolation "sentences" may be served for multiple minor offenses. The average sentence is 150 days. The three people cited in the case were isolated from 9 to over 24 continuous months for non-violent behavior. Two of them had serious mental illnesses before they went to prison and the third developed one while in isolation. All of their conditions got worse in the SHU.

The plaintiffs argue that long-term solitary confinement for non-violent and trivial offenses is "cruel and unusual punishment" outlawed by the 8th. Amendment. They also claim that the way prison officials investigate and try infractions and sentence confinement violates the 14th. Amendment's Due Process Clause, because the word of a prison guard always "trumps" testimony and evidence provided by a prisoner, and because people have been sentenced to SHU simply for being unable to prove to the satisfaction of the prison guards who run the trials, that an allegation of serious misconduct, such as sexual abuse, against a guard, is true.

We didn't know, at press time, when the court would hear the case.


‘Til Facility Do Us Part: Forziano v Burke

The official name of this case is Frank Forziano, Paul Forziano, Roseann Forziano, Bonnie Samuels, Hava Samuels and Norman Samuels v. Courtney Burke, Independent Group Home Living Program, Inc., Maryhaven Center of Hope, Inc. and State of New York. You may have already heard about it, and you certainly will in times to come.

Paul Forziano and Hava Samuels are two people with intellectual disabilities who live in two different group homes on Long Island. Not unusual, for sure, except that they are married—to each other. Neither facility will allow them to live together.

The widespread media reports have been somewhat contradictory, and since we can't see the complaint (at least, not without paying for it) we don't know what, specifically, is being alleged. Here's what seem to be the facts:

The other Forzianos and Samuelses listed are the parents of Paul and Hava. Courtney Burke is the Commissioner of the NYS Office of People with Developmental Disabilities (OPWDD). Independent Group Home Living Program, or IGHLP, (there's a contradiction in terms) operates the facility where Forziano lives, while Maryhaven Center of Hope, which is run by Catholic Health Systems, houses Samuels. The State of New York is supposed to be in charge.

The marriage took place in April 2013, but the parents say that it had been planned since 2010, when they and their children began asking for a place to live together.

The Associated Press (AP) reported that, according to "the lawsuit", IGHLP said in a letter that its facilities "are not staffed or designed to house and supervise married couples or assist married couples with the dynamics of their relationships, sexual or otherwise." IGHLP's lawyer told the AP that there is no specific legal requirement for the facility to provide quarters for married residents.

The AP story also said that Maryhaven refused "because it believes [Samuels] doesn't have the mental capacity to consent to sex."

It was variously reported that OPWDD officials claimed that there were no other nearby facilities that would accept married couples, that there were such facilities nearby but they had no openings, that OPWDD had "sided with" the group "home" operators, and that OPWDD had no comment on the lawsuit other than to say that married people seeking to live in group "homes" are a "small minority" of residents of such facilities.

New York State law requires that people considered to have limited intellectual abilities who are in the "custody" of state-certified residential facilities must be evaluated on their ability to consent to sexual activity if they seek to have any sexual relationships. OPWDD has often used a written "test" for these evaluations. Some of the questions on the test require a very sophisticated understanding of the nature of relationships; others appear to require "applicants" to agree with, or at least understand, concepts of conventional religious sexual morality. We would wager that many so-called "normal" people could not pass that test.

But a facility that lets residents have sexual relations without both parties having "passed" the evaluation can be charged with neglect and/or sexual abuse, and its employees can be subjected to criminal charges. So this is not a matter that any certified facility can afford to take lightly. It is also not a matter of OPWDD "taking sides"; that agency has no choice but to enforce the law. Only the state legislature, or a very specific court decision, can change this.

As for what group "homes" are required to do:

All such state-certified facilities operated, or funded, by OPWDD are required to provide whatever individualized support each resident needs while in the facility, including help with building and maintaining relationships with peers. If the facility is an "Individual Residential Alternative" (IRA), the funding it receives is supposed to be calculated specifically from the costs of meeting those individual needs. ICFs ("Intermediate Care Facilities") are funded differently but are still required to provide individualized supports and services to residents. We don't know what types of facilities are involved in this case.

There are some limits to this. The needs, and services to meet them, must be in the resident's individual service plan. A facility that doesn't have physical capacity to meet a need (other than accessibility, which is required) probably can't be forced to take in someone whose needs it can't meet. For example, if the facility only has single-person bedrooms, it can't be required to let two people live in one room, and it probably can't be required to tear down walls to create a larger room for two people. And, of course, it's unreasonable to expect a facility to violate the rights of one resident to meet the needs of another, so a facility that is full can't be expected to kick out someone who doesn't want to leave, in order to make room for the spouse of another resident.

However, capacity to consent to sexual activity is not a matter of personal opinion, religious or otherwise, under state law. If the parties can pass a valid evaluation, they have the capacity to consent, period, as well as the right to act on their desires. OPWDD has a responsibility to ensure that these evaluations are done in a uniform, objective, and scientifically valid way.

As a law professor quoted in various media reports said, "This is a case that is moving into uncharted territory. If a state licenses the couple to be married, they are afforded all of the protections and privileges of marriage. The most fundamental right is to be able to live together as a married couple." The court could decide whether a marriage license trumps the state law regarding capacity-to-consent determinations in certified residences.

However, it is clearly illegal for a group "home" that has a vacant two-person bedroom to refuse to let an otherwise-eligible married couple that "passed the test" live in it merely because they are a couple. And it is also illegal to refuse to provide staff to "supervise" and "assist" that couple "with the dynamics of their relationship, sexual or otherwise"—if they need any.

The question that hasn't been raised in all this media coverage is, why would a married couple want to live in a group "home"? Why wouldn't they want the privacy and freedom that living in their own, real, home provides?

We don't really know what Forziano and Samuels want. The media has portrayed them as very unhappy that they aren't allowed to live together, but that's all we know. The rest of the information comes from their parents and attorneys.

The parents seem to believe that the couple aren't capable of living in their own home. But we don't know if any of these people have been told that the couple has a legal and civil right to get the supports and services they need in any residence they choose, including their own home; that such services and supports can be provided effectively and safely and have been provided to others; and that Paul and Hava have a right to make reasonable decisions about it themselves.

When it comes to sexuality, people get very uptight. Even disability rights advocates can get it wrong. The New American Movement for People with Disabilities released a statement that said, "the suggestion that the couple can simply move if they are discontent with ... their service provider ignores both the complexity of disability support services and the desires of all romantic couples with disabilities who receive supports. ... Moving to another provider would uproot their social capital and deliberately discounts the value of the couple's friends, job and families in their lives. Furthermore, [the suggestion] completely eliminates the responsibility of the provider agency to make reasonable modifications as [required] by the ... ADA."

The two facilities in question are about 3 miles apart. These advocates don't seem to be aware that nobody would have to move further than to the nearest available rental unit, and that all of the support and supervision they need could be provided there. The couple see each other every day at a "performing arts education center". Leaving a provider's residential facility would not change how they spend their time during the day, nor would it deny them access to their friends, even if those friends live in the group "homes".

Nondisabled American married couples don't usually live in communal settings with friends, but sometimes they do. In such cases, it is a matter of choice, not only for the couple, but for the friends. Perhaps some friends would rather not live in such close quarters with a married couple if they had a choice.

We would certainly like to see NY's draconian legal restrictions on sexual activity by people with intellectual disabilities lifted. But we don't think taking this case to court will do that. The court will try very hard to avoid that controversy. It can resolve the case by saying what we've already said here—if the couple can "pass the test", the facility operators have to accommodate them if they have suitable vacancies—and that's what it's likely to do.

The real solution to the problem for Paul and Hava is indeed to move—not only out of those group "homes", but out of any state-certified program that requires them to submit to "capacity to consent" evaluations. All of the services they need can be provided in their own non-certified home, with state funding, and that is the way for them to finally be united in matrimony.

Still, we'll watch this case with interest because it's sure to be interesting for a long time.

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Budget Post Time

We were close to being right on the money when we said, last time, that "we'd wager that the Legislature won't approve anything it didn't approve last year, and everything else we've described will go through mostly unchanged." Here's how all the entries in the race finished:

Dogs

Cuomo's proposals to curtail "Spousal Refusal" and convert the Early Intervention program to managed care were rejected wholesale.

His plan to end "prescriber prevails" for anti-psychotic drugs was also rebuffed, and see below!

Following the deal with the feds that cut $500 million in federal funding out of Medicaid, some Republicans resurrected their (usually) annual attempt to cut "optional" Medicaid services. ("Optional" means the state isn't required to offer them under federal law; it does not mean the state can have a rational or cost-effective Medicaid system without them.) This went nowhere.

Photo Finishes

The housing picture looks better than expected—to the extent that we know what it looks like at all. As we've reported, there are various state housing programs and it is never clear how the published budget numbers actually affect availability of housing.

Still, officially the Medicaid Redesign Team (MRT)'s "Supportive Housing Development Program" was funded at about $86 million for 2013-14, which looks like a $5 million loss over the original projection. Last year a lot of money under this project went to one nursing facility to build a new segregated congregate facility, and a lot of it was allocated to the state "mental hygiene" agencies (OPWDD, OMH and OASAS) to (mostly) do what they usually do—build or renovate group "homes". We don't know what the plans are for this year's MRT funds.

Then there was Cuomo's "new" proposal to "invest $1 billion over 5 years to preserve and create 14,300 affordable housing units statewide." As we reported last time, most of this money seems to be targeted to repair existing "affordable" housing; not for new low-income housing. It is not clear what, if any, overlap, there is between this and the MRT housing program.

And finally, separate from this is the continued development of supported housing "beds" mandated by two lawsuit settlements involving people with mental health disabilities, as well as ongoing work on housing for homeless people in New York City.

Complicating the issue was an announcement in May by the Cuomo Administration of $91 million worth of "awards" for "shovel-ready" housing development projects. Since these awards followed a "rigorous application process" that must have started well before the current fiscal year, at least some of this appears to be MRT, or mandated lawsuit settlement, funds budgeted for FY 2012-13 that is finally being spent.

It looks like the new Medicaid Managed Care Ombuds program will get started in the current budget. The original proposal was for $3 million; we heard it had been cut to $1.5 million, then later that it was being put off until FY 2014-15. We don't know if it's fully funded or not.

Also-Rans

Cuomo's proposal to require nursing facilities to use state Medicaid funds to pay special higher minimum wages to various kinds of workers was rejected.

The Access to Home program, which pays for home modifications for people who can't afford them was maintained at an entirely inadequate $1 million.

The state funds administered by the New York State Adult Career and Continuing Education Services – Vocational Rehabilitation agency (ACCES-VR; formerly VESID) to be provided to Centers for Independent Living like STIC were maintained at current levels.

Out of the Running

Cuomo's proposed $120 million cut in funding for "voluntary" (that is, other than state government) providers of developmental disabilities services was reduced to $90 million. This was originally presented as an across-the-board cut. But state legislators got, and continue to get, a lot of publicity by pointing out that Cuomo could have reduced this even more by dropping his (apparently successful) plan to pay a $5 million dollar bribe (er.... incentive) to the producers of the Tonight Show to get them to return the show to New York City. OPWDD announced that who gets cut by how much will be determined by a committee that will look at individual provider organizations and try to eliminate things such as excessive executive compensation, excessive or "fraudulent" charges for services, and high administrative costs. Officials claimed that none of this would reduce services, and on paper it appeared that STIC might not be cut at all. But state agencies constantly squeeze us on "administrative costs", by refusing to pay for computers or to make empty space in our building suitable for use, and without considering the growing costs of compliance with tighter documentation and "quality assurance" requirements. No state agency pays the full cost of any service that it contracts with us to provide. The pressure on our unreserved funds (the money that you donate to us, and which we need to save for things like roof and HVAC equipment repair and replacement) is increasing. Eventually services jolly well will be cut. Either that or the roof will collapse.

Cuomo partially succeeded in killing the open competitive bidding requirement for OPWDD's DISCOs (and the newest wrinkle in managed care, FIDAs—the Fully Integrated Duals Advantage demonstration project—which are managed long-term care organizations for people who have both Medicaid and Medicare). Instead of issuing full-blown Requests for Proposals, OPWDD and DOH only have to post a notice on their website of their intention to establish these programs, give interested vendors 30 days to submit some kind of offer to run them, and then consider those submissions along with those of whoever they really want to award contracts to.

As the state legislature considered this legislation to enact DISCOs and FIDAs, some segregated congregate service providers got the bill changed to say that regardless of what an objective scientific needs assessment says about what people with disabilities need, their "wishes" to be segregated will be respected. STIC and other advocates saw this and went to work. In the end, that dangerous language was somewhat changed. The final law says that the needs assessment and service planning process should take account of people's wishes that are consistent with their needs when determining how services will be provided—which is what "real person-centered planning" means, and has always meant. We think that people whose actual needs don't include segregation will not be able to demand it just because they "wish" it, but time will tell.

As we reported last time, due-process protections for Medicaid managed care enrollees are under siege. Unfortunately, the bill sponsored by Assemblyman Gottfried to restore due process protections to Medicaid managed care went nowhere, though he, and we, are still trying.

Dark Horses

Cuomo didn't just lose on "provider prevails"; he lost big. As of July 1, 2013, most types of drugs are back under "prescriber prevails" in Medicaid Managed Care. Doctors got the last word back on 8 categories of medication: antidepressants; antiretrovirals; antirejection (including those used to treat various autoimmune diseases); seizure/epilepsy; endocrine (including hormones and anti-diabetes meds); hematologic (including anticoagulants); and immunologic (vaccines as well as things like interferon for the flu and anti-shingles drugs).

NY's "prompt payment" requirements for insurance companies were extended to include fiscal intermediaries. What does that mean? STIC's CDPA program is a fiscal intermediary: we collect time sheets from consumers and their attendants, bill Medicaid or managed care insurance companies, and then pay the workers. NY Medicaid has always been pretty quick to pay when bills are submitted electronically. But although managed care for homecare is in its infancy, already problems have arisen with insurance companies taking months to make payments to organizations like STIC. So this was a welcome win that we frankly didn't expect.

Lame Dark Horse

Unbeknownst to us, a bill was proposed to change NY's "scope of practice" law to allow some types of "traditional" homecare workers to administer medications to people. This bill did not pass. CDPA workers can already do this. However, OPWDD habilitation workers cannot, and it doesn't appear that they would have been affected by this bill anyway. This is a big gap in what's needed to provide fully integrated community supports and employment; right now people in STIC's one-on-one integrated habilitation programs who need meds during the day have to return home to have someone (sometimes a CDPA worker) administer them.

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Managed Care is Everywhere!

There are several types of mandatory Medicaid managed care being introduced in NY. DISCOs, FIDAs and Health Homes are among them, but this article focuses on two other types: Mainstream Managed Care and Managed Long Term Care.

Don't ask us why these are two separate categories. We don't know, and even the experts don't seem to be able to clearly explain them. They overlap in some ways but not in others.

"Mainstream Managed Care" (MMC) is for people of any age who have Medicaid but not Medicare, whether they have disabilities or not. "Managed Long-Term Care" (MLTC) is for adults over age 21 who have Medicaid, and some, but not all adults, who have both Medicaid and Medicare, and who need more than 120 days of long-term support services, including homecare and/or other forms of medical care for what appear to be chronic health conditions.

Then there are "exemptions" and "exclusions". If you're "exempt" from mandatory managed care, it means you can voluntarily enroll but don't have to. If you're "excluded", you are not allowed to be in managed care. If you think you're exempt, you have to apply and have the state say you are. You typically don't have to apply for exclusions, but sometimes the state will "mistakenly" enroll you anyway, and then you'll have to take formal action to disenroll. It's also possible to be required to enroll in managed care temporarily until you get approved for a program that is exempt or excluded, after which you'll have to disenroll.

If you live in STIC's service area and need long-term care, you're probably eligible for both MMC and MLTC, but not yet required to enroll in either. That will change. Many exemptions and exclusions are already gone, and the only thing that is stopping many people from being forced into managed care is that their counties haven't come up on the roll-out calendar yet.

Here are recent and upcoming milestones on the road to full mandatory Medicaid managed care:

April 2013

The following exemptions and exclusions for mandatory participation in MMC ended: people in the Long Term Home Health Care Program (LTHHCP, or "Lombardi") waiver; people in the Medicaid Buy-In; upstate children living in community foster care. People in LTHHCP will be able to opt out of MMC and enroll in MLTC instead. Mandatory managed care applies only to LTHHCP participants if they live in areas where "capacity exists"; that is, where there are managed care organizations available to enroll them.

New MMC-covered benefits include Medical Social Services and Home Delivered Meals for people transitioning from LTHHCP to managed care.

New MLTC benefits include Adult Day Health Care and AIDS Adult Day Health Care.

June 2013

MLTC begins to move upstate from New York City and Long Island; the first new counties are Rockland and Orange.

July 2013

New benefits added to MMC: Adult Day Health Care, AIDS Adult Day Health Care, and "directly observed therapy for TB inpatient".

October 2013

Nursing facility residents will be subject to mandatory participation in MMC.

Hospice is added to the list of benefits for both MMC and MLTC.

December 2013

New MLTC counties include Albany, Erie, Onondaga and Monroe.

April 2014

MMC exemptions/exclusions end for residents of long term chemical dependence programs and state psych centers.

New MMC benefits include some specific lab tests, comprehensive Medicaid case management, OASAS services through "Behavioral Health Organizations" (BHO) statewide, OMH BHO services in New York City, and some additional medication coverage.

Some specific lab tests are added to the MLTC benefit.

FIDA demonstrations begin for people who have both Medicaid and Medicare. FIDAs are a more comprehensive form of managed care; they offer Medicaid-waiver-like services as well as strictly medical and home-care services. There will be separate FIDA demonstrations for people with and without developmental disabilities. DD FIDAs are expected to look a lot like DISCOs and probably will become DISCOs eventually.

June 2014

Mandatory MLTC managed care rolls out to the rest of the state, "where capacity exists", for almost everybody else, except people in the NHTD and TBI waivers, people in nursing and assisted living facilities, and dual-eligibles who don't need "community-based" long-term support services.

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