Category Archives: Advocacy

“Keeping The Promise” Letter from Laura Kennedy


On behalf of Laura J. Kennedy, President, NYSARC, Inc.:


Dear Family Members and Friends,

During the last ten years, it has become increasingly difficult for people with intellectual and developmental disabilities to secure the residential placements they need to live safe, secure, and independent lives in their communities.Additionally, families throughout the state live in a perpetual state of anxiety that despite their advancing age and possible infirmity there is no assurance that anything other than a family catastrophe, including the death of a family caregiver, will be sufficient to justify an appropriate residential placement.

This problem only seems to be getting worse. According to a recent report by OPWDD, there are thousands of individuals who now need, or will need, permanent housing. In response to this growing housing crisis, parents and advocates have developed this Report To The Governor which describes the urgent problem and requests that the Governor expeditiously address it.

For all those who believe that we must resolve this issue, please  Read the Report to the Governor: “Keeping the Promise”and sign our online petition. We need thousands of names to bring this matter to the attention of the public, the press, and especially the Governor in preparation for the FY 18-19 State Budget.

For over half a century the united voice of families, parents, and friends of people with intellectual and developmental disabilities has helped ensure that they are never forgotten. During a period in our nation’s history when human needs are under siege the voice of our families, friends, and advocates throughout the state has never been more important.

Again, we urge you to Read the Report to the Governor: “Keeping the Promise”  and sign our online petition and ask that all of you who care about our families and their loved ones to do the same.

Thank you for your support!


“Keeping The Promise” FINAL

For Your Information:

There is a report called “Keeping the Promise” about residential needs in New York. It’s important that everyone have a chance to read it and decide for themselves whether or not they want to add their name to the petition.

Letter On behalf of Laura J Kennedy

Report to the Governor: “Keeping the Promise”

Deadline Extension for Submission of Comments on CCO Draft Application

PLEASE NOTE – The deadline for submission of comments on the Care Coordination Organization’s (CCO) Draft Application has been extended through Friday, August 11, 2017.  Details of this submission are included on the below email from Acting Commissioner Delaney which was originally sent on June 30, 2017.


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 at .

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.


Kerry A. Delaney

Acting Commissioner


UPDATE People First Care Coordination Webinar for Individuals and Families

Last week, Acting Commissioner Delaney announced the availability of an online presentation on People First Care Coordination for individuals and families who receive services through the Office for People With Disabilities’ (OPWDD) service system. The presentation will describe plans for the move to enhanced care coordination, as well as provide the reasons for this shift and a timeline of anticipated next steps.

If you would like to attend this online presentation, please note that the online portion of the event which is viewable from your computer, is now full.  However, you can still connect with just a telephone and listen to the presentation by following the instructions below:

Date:  Monday, August 7

Time:   1:00pm – 2:00pm

To listen to the presentation by phone:

Call 1-844-633-8697

When asked for your Access Code or Meeting Number enter 647572988#

If you are unable to listen to the event at that time, it will be recorded and posted at this link  for viewing at any time.

In the meantime, if you would like more information, please visit the People First Care Coordination section of the OPWDD website and feel free to submit any feedback you have about People First Care Coordination to