Calling the disabled community, family, and friends,

This petition is an effort to stop the transformation from medicaid service coordination to "people first" care coordination. Let me just say, it is everything but what the title says. It is a way for the state to combine services, cut staff, and, most important to them, save money. If this program is put into effect, your disabled child, family member, and/or friend will not gain benefits, but will lose them. And the disabled person will be like a "rubber stamp" that can be set aside, and dictated to be a second rate citizen, with no input to real life. It's difficult to explain exactly what the new implementation will bring, but please read my letter, at the bottom of this page sent to the director of the OPWDD, Kerry A. Delaney, for a better understanding of it. Please feel free to write, comment, and share this post, and I hope you will sign the petition. If you have any questions or concerns, comment, email, or call; I will try to answer all. Thank you in advance, and let's hope this stops, and gets nipped in the bud.

Definitions of services in questions

Service coordination assists persons with developmental disabilities and their families in gaining access to services and supports appropriate to their needs. OPWDD delivers almost all service coordination through its Medicaid Service Coordination program (MSC). MSC is provided by qualified service coordinators and uses a person-centered planning process in developing, implementing, and maintaining an Individualized Service Plan. Plan of Care Support Services (PCSS) is an alternative form of service coordination. PCSS providers assist individuals to review and update their Individualized Service Plan. PCSS is delivered by a qualified Medicaid Service Coordinator.

People First Care Coordination- letter from OPWDD Commissioner

Dear Friends and Colleagues:

New York State can take pride in its transformation of services for individuals with intellectual and developmental disabilities. By building and supporting a community-based system of care over the past 40 years, New York is a great example of what a State can do in partnership with providers, families, advocates and communities. Through this partnership, the Office for People With Developmental Disabilities (OPWDD) has been able to offer a wide range of residential and day supports.

However, as I travelled the State meeting with individuals, families and providers to assist in developing the recommendations of the Transformation Panel, it became clear that our system must evolve to meet the changing demands of today. Individuals and families want more flexibility and participation in program design and services and there is growing recognition of the need to offer a more seamless transition of school age children into the adult service system. In addition, as those we serve age, we must address their emerging needs. These challenges demand a more robust, integrated model of care; a model that not only includes the existing OPWDD services but brings together medical, behavioral health services and medication management in a single coordinated plan. Our system needs a model of care that offers more flexibility in how services are designed and delivered and rewards providers for achieving good outcomes for you and your family members.

I am very pleased to tell you about the next major step in the evolution of the OPWDD system to meet this need. We are prepared to begin a five-year effort that will start a new era of opportunity for people with intellectual and developmental disabilities. This new initiative, called People First Care Coordination, will enhance and expand service coordination for people currently supported by a Medicaid Service Coordinator (MSC) in preparation for our system’s move to fully integrated services in managed care.

People First Care Coordination will add the coordination of people’s health and wellness services to their current developmental disabilities Individualized Service Plan (ISP), which will be known as a Life Plan. Individuals currently enrolled in OPWDD services can have those services, plus those they receive from their dentists, physicians, behavioral health professionals and others, expertly combined into a single, integrated Life Plan which is overseen and monitored by their care manager.

The foundation of People First Care Coordination is Care Coordination Organizations (CCOs), authorized as Health Homes, which will be networks of existing OPWDD providers that will come together to provide integrated care coordination and work to transition MSCs into care manager roles. CCOs will offer a professional Care Manager and a specialized care coordination team to work directly with each individual served and his or her family to address all of his or her needs. The team and various service providers will be able to electronically share information and discuss an individual’s overall wellness and progress toward stated goals. CCOs and providers will report to OPWDD on the outcomes they are helping individuals achieve.

People First Care Coordination is not managed care, but over the next few years, CCOs will become or begin working with managed care organizations to further our system’s move to managed care. CCOs consisting of OPWDD providers will always be at the forefront in coordinating OPWDD services and supports.

In the coming weeks and months, we will be in further contact with you to explain People First Care Coordination, outline its timeline and respond to any of your questions. I would encourage you to read and submit comments related to the draft Application for entities who may be interested in becoming CCO’s. You can find a link to the Application on our website.

Thank you for your continued partnership as we transform our system of supports and services to enrich the lives of New Yorkers with developmental disabilities – today, tomorrow and well into the future.

Sincerely,

Kerry A. Delaney

Acting Commissioner

My complaint letter

Dear Commissioner Delaney,

This is Chad Norton writing to you once again; You may remember me from the recent transformation panel and other writings in the past. For example I voiced my opinion about the vehicle lease plans, and I am happy that a compromise was reached. At this time I am writing with a much larger concern, that doesn't only affect me and the local disabled community, but statewide would affect individuals with disabilities who need services, and perhaps even beyond state lines.

I am referring to the new measures to change service coordination to care coordination. I attended the local hearing a few months back to learn more about the transformation. At the hearing I realized that the new requirements as they stand would remove the ability of the coordinator to focus on any one person's individual circumstances because of the number of cases one coordinator would be required to handle. It would also take away any personal interaction and communication between the individual's needs, so that many voices would not be heard, which I feel would be unfair to the coordinators, the disabled person, and their family, as their situations are all unique.

Furthermore, I am concerned that the past will repeat itself, and that instead of coordinators and the individual will be empowered to take a "self directed" approach, the agency itself will be making decisions by "rubber-stamping" individuals with a package that doesn't necessarily fit their needs. My individual personal experience of the past even included the use of a monkey to complete tasks that it could be trained to do, that bathroom times were to be distributed according to what someone determined sufficient, and that all records would be kept in terms of time to complete each task; A far cry from reality. It would be ludicrous to assume that we have perfected a "robot" to take the place of human interaction. It also takes away from the self-direction aspect and common human dignity.

Another negative point is the new criteria that the agencies that were to be certified as a care coordinated agency would required to handle at least 10,000 individuals. I currently am serving on two local agency boards that do not meet that requirement. This requirement should be modified or eliminated in order to allow the agencies that have been serving these people to continue to do so. If anything, the idea of making the requirements almost impossible would simply make the agencies disappear, except for the largest and wealthiest ones. That is not an improvement, it would mean doing far more with far less resources. Perhaps the only winners would be those that enjoy six figure incomes and yearly bonuses in the millions for basically taking away services from those that need it the most. The services that are being taken away by someone behind a desk only benefits the person behind the desk, and leaves all others out in the cold.

I have been receiving services since approximately 1996. Many changes have taken place in that time period. The one constant I see is that the states budget requires cuts in services each year, making it more difficult to continue the quality that any individual should enjoy in this country.

I have been very involved in the community for many years, serving on the United Way as a young child, voluntarily sitting on 3 individual boards, and running two non-profit corporations currently; however, there is no Cadillac in my driveway, no private jet available, just the basic requirements for every day life.

I have every intention on standing up for what I believe in, and I feel a ruling had already been made before the public, rather than the public being consulted before making a ruling; after all it is the public that vote, and those elected are supposed to serve them, not dictate to them. Many individuals such as myself feel exactly the same way. Having said that, we as a whole need to figure out a way to keep service coordination and satisfy the state at the same time. Until then, any further progress on this new implementation should be halted.

In closing, I want you to know that I am not the type of person to push an idea without volunteering to help complete the thought. In fact, I suggest we form a committee to address this issue, and I would be willing to head that group. Please let me know when any decisions are to be made; I would appreciate the heads up prior to the implementation, when it would be too late to speak up.

Sincerely yours,

Chad Norton