Marc N. Brandt, Executive Director

Suddenly it seems that the 1115 Waiver may no longer be the vehicle for change for New York State’s system of services for people with developmental disabilities.  Some may be tempted to think that we can enjoy a respite from the pervasive anxiety about our future.

Nothing could be further from the truth.

The fundamental policy direction for our service system is still intact.  Managed care is still the top priority.  We are still in the grips of austerity.  A top-to-bottom overhaul of the way we do everything is still inevitable.  It may take time, but it will happen. Our destination shows no sign of changing though we may be find ourselves using another vehicle to get there, whether we call it the 1115 Waiver or 1915 Waiver.

NYSARC is still dedicated to responsible change.  As the largest parent-based organization serving people with developmental disabilities in the nation, we have an obligation to lead that change, not only to ensure that the mission and values of our organization remains undiminished, but also to do our part to ensure that the entire field retains the fruits of a revolution we began sixty years ago.  That revolution brought people with developmental disabilities and their families out of a long dark age.  We will not let them return to that dark age.  That’s in our self-interest as an organization.  But more importantly, it’s also in the interests of untold thousands across our State and nation who are not part of our organization.

If we go from a 1115 to a 1915, only one digit will change.  Other than that, it is up to us to make sure that the most important things – the dignity and well-being of the people we support – remain fully intact.   It won’t be easy but we may be the only ones who can do it.

However, the Commissioner noted that “the movement to managed care and the timeline it will require for OPWDD has not changed.”

This assessment comes on the heels of ongoing discussions with CMS.  A switch to another type of waiver had been rumored. Please see the full letter below:

“April 26, 2012

Dear Friends:

We are continuing to make significant progress in development of the People First Waiver, and I would like to share the latest information on some recent events and ongoing discussions.

This month, we made seven public presentations, which were attended by more than 850 people statewide. For those who were unable to attend, video of the presentation is available online. To date, we have conducted more than 100 public presentations or discussions on this critical initiative.

Many stakeholders are asking about our goals for the waiver, and what this process will look like. To help answer people’s questions, we have produced an introductory waiver presentation that gives an overview of what a waiver is, why it is necessary to what OPWDD is trying to achieve, and what to expect throughout its development. That presentation may also be found online.

Here is some additional up-to-date information:

• At this time, OPWDD is negotiating with the Centers for Medicare & Medicaid Services (CMS) on the financial framework and to define the boundaries of the flexibility that we believe are needed to improve the quality of supports and services in the future. After our most recent discussions with CMS, we recognize that an 1115 federal waiver may not be the best vehicle to use to meet our goals. Therefore, moving forward, in the event that a waiver to a different section of federal law is what we seek, this initiative will be referred to only as the People First Waiver.
• The movement to managed care and the timeline it will require for OPWDD has not changed, since our approach all along has been that this is a multi-year process. However, due to ongoing discussions, our timeline may shift slightly into the future.

This system redesign is a journey, and one that requires all of us—individuals and their families, nonprofit providers and OPWDD staff—to collaboratively build a sustainable service delivery system for the future.

Thousands of people have joined this endeavor. I very much appreciate your involvement to date, and look forward to hearing your suggestions as we move forward.

Sincerely,

Commissioner Burke

P.S. Communication is critical to our collective success, and OPWDD’s Facebook page is a great place for individuals, family members, employees, advocates, and other stakeholders to exchange thoughts and ideas. Please feel free to join the conversation.”

Read the article: http://www.timesunion.com/local/article/Capital-profile-3483973.php

“Governor Cuomo’s plan to reduce New York’s rising Medicaid costs may send some of the state’s poor and elderly to nursing homes”

Politics as It Happens has previously posted stories on the State mandated Home Care transition to managed care which is the subject of the Daily News story.

Read the full article

Gov. Andrew Cuomo has vowed to reform the wasteful and sometimes dangerous system that is supposed to care for more than 125,000 developmentally disabled adults in about 6,000 homes across New York State.

A startling series in The Times by Danny Hakim and Russ Buettner shows how much needs to be done. An article last week laid bare a wasteful reimbursement system that permits some nonprofit groups that care for the disabled to line their pockets, driving up costs for what is already the costliest system of its kind in the nation. A previous article found that one in six deaths in homes for the developmentally disabled managed privately and by the state — more than 1,200 deaths in the past decade — were attributed to unnatural or unknown causes. In Connecticut and Massachusetts, it was about 1 in 25 deaths.

Read the full editorial

Note: This article comes to us from our New York City Chapter, AHRC New York City. This article is NOT about the nuts and bolts of the 1115 Waiver. It is about the situation we currently find ourselves  in, how we got here, and what we need to do to ensure that the people we are committed to serve continue to have the lives to which  they are entitled.

 Some History

Over the last more than thirty years, since the closing of the infamous Willowbrook State School, New York State OPWDD (then called OMRDD)  — working in partnership with families, individuals served and providers — built a system of services and supports for individuals with developmental disabilities that has surpassed any other system in the nation in its breadth and scope.

It was Medicaid (the federal, until now open-ended “entitlement” program which was established to assist states in the provision of health care and related services –selected by each state– to be provided to eligible needy persons) that in the 1970’s became the funding source for community residential development in New York beginning with ICF/MR’s. A decade later when Congress enacted the Home and Community-Based Medicaid Waiver program, becoming aware of substantial changes in how Medicaid dollars could be used to fund community-based services and truly allow the field to further the movement away from institutional care, New York State OPWDD became extremely adept at using the Medicaid program to create an array of long-term care community services to meet the needs of individuals with developmental disabilities. When establishing its Medicaid program New York State opted to not only provide the Mandated Services required for participation in the federal program, but also opted to offer Optional State Medicaid Services to all eligible Medicaid recipients. And New York State was willing and had the capacity to supply a high percentage of the requisite matching funds, 50% (as compared to the 30 – 40% match of most states.)

Deficit reduction packages in the 1990’s (all without major cuts in funding for programs serving low-income families and people with disabilities) changed the country’s fiscal situation from one of large deficits through the mid-90’s to one of large surpluses in the late 90’s. But there was a downturn in the early 2000’s with the country again facing enormous deficits and resulting deficit reduction efforts that this time focused on so-called entitlement spending, which included Medicaid. When President Obama took the reins two years ago, the economy was mired in astronomical deficits, relentlessly rising general health care costs, and states around the nation complaining of the enormous growth in Medicaid that was strangling their economies. The writing was on the wall as regards the changes in the Medicaid program that would be forthcoming.

Over the last twenty-five years, New York State OPWDD brought in sufficient Medicaid dollars through its developmental disabilities programs to fund the vast array of services for this population currently in existence, and to additionally add funds to the state’s general coffers. This has been a known fact for a long time, as has been the fact that people with developmental disabilities represent a relatively small percentage of Medicaid enrollees but use a large percentage of Medicaid dollars in New York. Nevertheless last year’s Poughkeepsie Journal Articles enumerating exactly how the federal Medicaid funds for individuals with developmental disabilities in New York were calculated — even though the federal Center on Medicaid Services (CMS) was aware of and had agreed on the formula – motivated a re-examination of New York State’s Medicaid situation.

The 1115 Waiver in New York State: How to Manage Care and Manage Costs?

At the current time, just like the federal economy, the New York State economy is in dire straits. Many other states struggling to deliver services and manage costs in this weak economy are, as is New York in its new 1115 Waiver, looking at managed care models as the new way to fund long-term services.

New York State’s OPWDD describes the 1115 Waiver as a way to make a good system even better with efficient financial resource distribution based on need and person centered care, greater access, choice, and flexibility. Although New York’s 1115 Waiver may be able to deliver on these offerings, the Waiver is ultimately and above all else about cutting costs and doing so through a managed care system using a model that includes all services in its capitation rate. It is important to truly understand that the perceived potential for savings is the key factor for instituting the new system. It is important in order to understand what is about to ensue and in order to truly protect the interests of people with developmental disabilities.

New York State and the states now entering the world of managed care for long term services are actually entering uncharted territory. The Kaiser Commission on Medicaid and the Uninsured issued a report last month (October 2011) entitled “Examining Medicaid Managed Long-Term Service and Support (MLTSS) Programs: Key Issues to Consider,” (www.kff.org/medicaid/8243.cfm). The report states that, “Relatively few states currently use capitated models to manage care for the elderly or individuals with disabilities, the populations most likely to require long-term service and supports (LTSS). Research to date indicates that relative to fee-for-service programs, MLTSS programs reduce the use of institutional services and increase access to home and community-based services, but there is little definitive evidence about whether the model saves money or how it affects outcomes for consumers.”

The Kaiser Commission report suggests that if MLTSS programs are to be successful, “… it is essential for states to have time, expertise, and financial resources to consult with stakeholders, shape programs, attend to administrative details, clarify expectations and monitor program operations so that they can strike the right balance between managing care and managing costs.” Although there has been some commentary suggesting that New York State’s OPWDD is moving too quickly to examine impact, they do appear to be trying to do what is enumerated above. Nevertheless many serious questions still remain and will undoubtedly be answered as we move forward. Hopefully needed direction will be arrived at through a process that will not only give lip-service to, but will truly include, input from the consumers who will be the recipients of LTSS and input from the community-based provider organizations that have earned consumer trust over the years and understand their strengths and needs.

Click here to read about “What We Really Need to Do to Build a Stronger System for People with Developmental Disabilities”

Shirley Berenstein
AHRC Director of Public Information

Courtney Burke, Commissioner, OPWDD

The New York State Office for People With Developmental Disabilities (OPWDD) is developing a new 1115 waiver which will encompass all Medicaid services that are used by people with developmental disabilities who are eligible for OPWDD services. This waiver will bring significant programmatic, administrative, and fiscal improvements to its service system. An 1115 waiver allows states to test service system improvements while retaining federal Medicaid support for services. The People First Waiver will support continued progress in providing person-centered, community-based services for greater numbers of people, further reduce institutional care, and develop a sustainable fiscal platform that supports community-based services with greater efficiency and accountability.

Specifically, the People First Waiver will support:

• An enhanced, more flexible community-based service menu that responds to the heightened complexities of need among the people being served.
• Customized care coordination that employs person-centered planning and supports the full range of service needs of people with developmental disabilities (long-term supports and services traditionally provided by OPWDD, mental health services, acute health care services, dental care, etc.)
• New methods of assessing individuals’ needs and using those assessments to allocate resources resulting in greater equity and efficiency in the use of resources.
• A new quality assurance and oversight system that promotes excellence in service delivery, operations and governance, and measures effectiveness at the individual and system levels.
• Transition of more individuals from campus-based institutional settings to community settings with enhanced supports.
• Creation of Medicaid-funded safety net services that prevent the need for costly services such as hospital stays or emergency room visits.
• A funding platform that supports flexible, community-based supports and services and corrects historical imbalances in the reimbursement for institutional services.

The DISCO

The People First Waiver is a timely opportunity for New York State to build a customized service delivery system informed by the collective experience and expertise in developmental disabilities that has developed among individuals, families, and service providers over the past 30 years. As the nation and New York State reform health care and Medicaid, the new system will align with current policy direction and reflect what we know is needed in a high quality system of supports and services for people with developmental disabilities.

Specialized developmental disability individual support and care coordination organizations (DISCOs) will be nonprofit organizations with experience supporting individuals with developmental disabilities and will be responsible for coordinating care and ensuring the delivery of services. The objective is that DISCOs will coordinate the full spectrum of services a person uses, including health care. It is, however, possible that the DISCOs will initially gain experience coordinating long-term care services, and then transition toward more comprehensive service coordination (acute and specialty health care, behavioral health care, etc).

Because the DISCOs must have experience working with individuals with developmental disabilities, they may provide services directly, but must also subcontract with qualified providers to ensure that individuals have a choice of qualified providers that offer the full range of supports including innovative and culturally relevant service options. DISCOs will receive a monthly capitation payment based on people’s assessed needs. New York will initially share some of the financial risk. The DISCOs will eventually assume full financial risk for meeting service needs within the capitation revenue.

Waiver Design Process

The waiver initiative began with the submission of a concept paper to federal Centers for Medicare & Medicaid Services in April 2011. OPWDD then began gathering public input and launched a waiver design process involving key stakeholders—individuals with developmental disabilities, family members, service provider agencies and agency associations, and experts in long-term care, behavioral health care, services for the aging, and home care. In late August, design teams reported their recommendations, identified next steps, and described key issues to be resolved. OPWDD incorporated the recommendations into the 2011 Statewide Comprehensive Plan (the 5.07 Plan) and will receive comment on the plan in public hearings on November 9.

In November, OPWDD will issue a Request for Information (RFI) and subsequently, a Request for Applications (RFA), which will launch pilot projects that will demonstrate the managed care model of service delivery and funding and reforms related to individualized needs assessments, quality measurement, and improved coordination of person-centered services.

I am committed to keeping individuals, families, and colleagues throughout the system informed of our progress and continued efforts to enrich the lives of people with developmental disabilities. Questions, suggestions and concerns are appreciated, and can be directed to People.First@opwdd.ny.gov or to 1-866-946-9733 (TTY 1-866-933-4889).

Courtney Burke
Commissioner, Office for People with Developmental Disabilities

From the OPWDD Website:

“OPWDD has incorporated the People First Waiver design team recommendations into its draft annual 5.07 Statewide Comprehensive Plan for 2011-2015. Each year this plan sets the agency direction for the coming years, and appropriately, this year’s 5.07 Plan affirms the development of the new waiver as the forward course for this vital New York State service system. In November, OPWDD will hold a statewide video conference public hearing to solicit comment on the draft plan. The People First Waiver Steering Committee will assist OPWDD to finalize the plan as the guiding document for OPWDD.”

Details on the November video conference will be shared when they are made available.

Read the Comprehensive Plan

Listen to the interview

Home health care appears to be at the leading edge of the Governor’s policy of creating a leaner, less expensive Medicaid program through consolidation of providers and managed care.  The developmental disabilities field may be right on the heels of developments in the home health care field as described in the following article.

Read the full article

• Created as a new option under federal health care reform (Affordable Care Act)
• NY State Department of Health (DOH) is currently soliciting providers to become Medicaid health homes
• The NY State DOH initiative is targeting Medicaid utilization among people with serious mental illness and people with multiple chronic medical conditions
• People with intellectual and developmental disabilities are excluded from participation in NY’s current health homes initiative.

Background:

New provisions in the federal health care reform law allow for the establishment of health homes as a new Medicaid State Plan Option and increased federal financial participation for the provision of certain services under health home auspice.  A health home is a provider (or network of providers) that is designated as a health home by the state by virtue of their capacity to deliver coordinated and integrated care to enrollees who have multiple chronic conditions.  Aggressive care management, the promotion of preventive health strategies, care delivered by a strong clinical team across health care settings, and the application of health information technology are expected to result in better health outcomes at a reduced cost to government.

NY State DOH is currently soliciting proposals from Medicaid providers who want to be designated as a health home.  DOH expects to have a statewide network of health homes established this fall and will begin to enroll people in health homes soon thereafter.   One of NY’s first health home initiatives will focus on enrollees with behavioral health and/or chronic medical conditions.  This population includes those with a serious and persistent mental health condition, those with two or more chronic medical conditions, and those with one chronic medical condition but at risk for a second chronic condition.  Chronic conditions include:  asthma, diabetes, heart disease, hypertension, and HIV/AIDS.  NY State’s filing with the federal government explicitly excludes those with intellectual disabilities.  DOH has explained that they will exclude anyone in receipt of a Medicaid funded service under the auspice of OPWDD.  More information on this initiative can be found on the NY State DOH website:

http://www.health.state.ny.us/health_care/medicaid/program/medicaid_health_homes/index.htm

Implications for the OPWDD 1115 Waiver:

The analysis that was done by the NY State DOH in support of its health home application to the federal government identified a large number of people with intellectual and developmental disabilities as among the populations who drive high Medicaid costs related to their utilization of multiple Medicaid funded services across health and long term care settings.  Specifically, DOH identified 52,000 people with i/dd and 2 or more chronic medical conditions.  While the i/dd population is not the current focus, it is reasonable to expect that the State will seek ways to better manage cost and utilization for this population either through similar strategies that are ultimately included in the OPWDD 1115 waiver or through later inclusion of this population in Medicaid Health Homes.  The program elements in health homes have strong parallels to some of the objectives in the 1115 waiver concept paper (e.g., strong care management, coordination of care across multiple settings, breaking down barriers between acute health care and long term care systems).  The developmental disabilities field would do well to closely monitor the implementation of Medicaid Health Homes.  It may provide us with insight as to the benefits and pitfalls of this kind of an approach to coordinated supports and services.