Partnership Created to Improve Care For People with Developmental Disabilities



Bridget Bartolone, CEO, Person Centered Services
(716) 324-5104

Nicholas Cappoletti, CEO, LIFEPlan CCO NY
(315) 565-2612 x 106

Jay Nagy, CEO, Advance Care Alliance
(646) 819-2033

Three organizations have joined forces to lead the transformation of health care and other services for people with intellectual and developmental disabilities across New York State.

The three entities — Advance Care Alliance, Life Plan, and Person Centered Services — currently coordinate care for approximately 65,000 individuals with intellectual and developmental disabilities, covering all 62 counties in the state. They have signed a Memorandum of Understanding to create a person-centered, comprehensive health-care solution that will expand health care and services options for people with intellectual and developmental disabilities.

With a strong partnership that reaches to every corner of the state, the collaboration will leverage the group's size, expertise, and geographical reach to expand health-care choices, incentivize and train providers, increase preventative care and ultimately improve outcomes.

It will use the group's long history of serving individuals with intellectual and developmental disabilities and combine it with a world class health-care network, with the goal of helping people live fully inclusive lives in their communities and offering individuals and families improved quality of life.

The collaboration, according to the CEOs from all three entities, will make sure proven, experienced Care Coordination Organizations in every part of the state are driving the future of care, and that individuals and families are offered more choice while being empowered to make their own health-care decisions. The partnership comes in the wake of New York's announced transformation plan that includes a transition to Medicaid managed care.

The partners represent the largest network of I/DD service providers in New York, with over 200 affiliated non-profit agencies. The three organizations combined employ over 2,000 dedicated care managers serving 65,000 people, with offices and a significant presence in every region of the state. This means they can offer non-profit values with best-in-class services, making sure a move to managed care can still reflect the values of the community being served.

The first step in the state's Office for People With Developmental Disabilities' restructuring of the system came on July 1, 2018, when it broadened the care coordination model to a Health Home system, centering all support services in one place through the creation of Care Coordination Organizations (CCOs).

All three entities in the new partnership are CCOs, already providing person-centered care management, planning and coordination tailored specifically to people with intellectual and developmental disabilities.

"I'm very excited to learn that providers I know and am comfortable with are working together to expand and improve services, and to lead change," said Fran Burnham, the mother of an adult with developmental disabilities. "This feels like the best-case scenario to keep consistency in my daughter's daily life, which she needs, but also help improve the care we receive."

The new partnership will ensure that experienced Care Coordination organizations are driving the formation of the state's required provider-led Specialized I/DD Plans (SIPS).

Advance Care Alliance coordinates care for people in 10 counties in the downstate area. Person Centered Services currently reaches to 18 counties in the western region of the state; and LIFEPlan CCO NY serves individuals in 38 counties across the northern, central, and southern part of the state, and the Hudson Valley.


Newsletter Bulletin, Volume 10: Building a Culture of Presence & Active Listening

ACA has released Newsletter Bulletin, Volume 10 for our affiliate network. 

Read CEO Jay Nagy’s message below:

Building a Culture of Presence & Active Listening

When someone is speaking to you, how often does your mind start to wander? Maybe you check something on your phone. Maybe something catches your eye. Maybe you start worrying about a challenge you’re facing. How often has it happened on a phone call? In a meeting? In front of a family and/or person supported by ACANY? In front of someone else important to you in your life?

In the past bulletins, we've shared many ideas about the values and the philosophy we’re instilling in the culture of ACANY. At a more essential level, providing Care Management in an individualized/person-centered way starts with the basics: listening and practicing being present. This point is illustrated well in the video above from Open Future Learning.

In order to fully assess the supports a person and their family need and to develop a meaningful plan, we need to begin by listening carefully to their story and what they have to say. We must listen actively and appreciatively. 

This is a constant struggle for all of us. We all need to challenge ourselves to do better—to be even more present and purposeful in everything we do.

—Jay Nagy, CEO

Newsletter Bulletin, Volume 9: Why do we provide Care Management?

ACA has released Newsletter Bulletin, Volume 9 for our affiliate network.

Read CEO Jay Nagy’s message below:

Keeping Perspective: Why do we provide Care Management?

Why do we do what we do in this field? What is the purpose of it all? The work requires a lot of us as people, so what drives us to invest ourselves in our jobs? 

These are provocative questions with many answers. I choose to answer them from the perspective of the people we support and their families: we do it to ensure that people have what they need to enjoy the lives they choose—and the lives they deserve! If the roles were reversed, we would want nothing less for ourselves and our loved ones. This reflects a principle that many of us were taught growing up: “Do unto others as you would have them do unto you.” The brief video above from Open Future Learning reinforces the idea with their typical humor.

The process of building a Life Plan for someone involves assessing needs, coordinating services, and then ensuring they’re delivered in a high-quality and timely manner. But are “services” really what someone experiencing a disability wants? Are they simply customers shopping for a product? The answer, of course, is a resounding “NO!” The services, supports, and programs are a means and not an end.

In every role within ACA, we should internalize, embrace, and keep this message top-of-mind. Yes, when someone calls to enroll in a program, they are literally asking for services. However, we should view these services in the larger context of helping people achieve the same things we all want in life. If someone calls their Care Manager to change the plan or find a new program, we shouldn’t just start processing the paperwork. We should take the time to ask why and assess the best course of action based on what they say. When we are auditing notes and records in Quality Assurance, we are not merely doing it to keep ACA in compliance—we are ensuring that documentation is accurate so we can be certain that people are actually getting what they need. 

We use labels like “enrollee” and “employee” to differentiate roles, but all of us are part of a community with one common mission: to help people lead more enriching lives.

—Jay Nagy, CEO

Newsletter Bulletin, Volume 8: Importance of a Shared Language

ACA has released Newsletter Bulletin, Volume 8 for our affiliate network. 

Read CEO Jay Nagy’s message below:

Importance of a Shared Language

The language that we use drives so much of how we think and behave. Without a doubt, anyone with even modest experience in this field has lived through several changes in the words we use to describe what we do and whom we do it for.Though it may seem small, having a common language and frame of reference will be critical as we come together as one ACANY.

The above illustration from Open Future Learning has two primary takeaways: the people we support do not belong to us and they don't deserve to be labeled as anything but "people” or preferably their own name. At its base, our treatment of people reflects how we think about them. Ingrained behaviors like language don’t change overnight, but when we train ourselves to be intentional in how we speak and think, our work becomes more person-centered as a result. Here’s a brief video from Open Future Learning that illustrates the same theme. 

Let’s all recommit to be more precise with the words we choose and to reflect on what they imply about our beliefs and attitudes. An easy way to do this is to reverse the situation: how you would feel if someone referred to you in the same way? If you wouldn’t like it very much, don’t assume their reaction would be any different.

—Jay Nagy, CEO

Newsletter Bulletin, Volume 7: What does it mean to be ‘Person Centered’?

ACA has released Newsletter Bulletin, Volume 7 for our affiliate network. 

Read CEO Jay Nagy’s message below:

What does it mean to be "Person Centered"? 

“Person centered” is a phrase that has become so frequently used in our field that its exact meaning is not always immediately clear. Over the coming weeks and months, ACA will sharpen our collective definition of what it means to be “person centered” by working together to support our community. In the meantime, I want to share a brief video by Beth Mount that outlines some ideas for us to consider.

A key theme in the video is the contrast between system-centered and person-centered ways of thinking and planning. System-centered thinking is very much rooted in the “medical model,” which was repudiated with the closing of the state schools and the shift toward greater community integration. That framework focuses on someone’s deficiencies and aims to “fix” them.  Too many in our field still think this way.  While the status quo does an okay job for many people with I/DD, we can do better for all the people and families we serve.

We have the potential to accelerate this shift in thinking and practice, under conflict-free Care Management. Our starting point should always be a person's capacities. This is followed by an assessment of their community and natural supports, tied together with their life goals and dreams. When this becomes the experience for everyone enrolled in ACA, we will have achieved success.

—Jay Nagy, CEO

Newsletter Bulletin, Volume 6: On Fostering Meaningful Relationships

ACA has released Newsletter Bulletin, Volume 6 for our affiliate network. 

Check out CEO Jay Nagy’s message below:

On Fostering Meaningful Relationships

In addition to practical information like announcements and advisories, we want to use this space to share stories and ideas as part of building a common language and framework for Care Management across ACANY.

In the short video above, David Pitonyak quotes Beth Mount: "Loneliness is the only real disability.” In fact, loneliness is increasingly being recognized as a public health hazard, especially among the elderly.

The factors that contribute to loneliness among the elderly are similar for people who experience disabilities. The need for us to "do better" is compelling in both cases. Do you remember the last time you asked someone you support about their friends and other relationships? Was it at their last planning meeting, or is it something you talk about on a regular basis? How many times does their ISP/Life Plan mention relationships?

One of the most provocative ideas in the video is that all the work we do–all the supports you coordinate for people–should be focused on developing meaningful and enduring relationships. Ensuring material needs like food and a home of one's own is important, but having people you can trust and cherish is the difference between having a life and just living.

—Jay Nagy, CEO

Newsletter Bulletin, Volume 5: Six Weeks of Progress

ACA has released Newsletter Bulletin, Volume 5 for our affiliate network. 

Read CEO Jay Nagy’s message below, reflecting on the past six weeks:

We are now six weeks in and CCO Care Management is a work in progress that is steadily advancing every day. As of the second week of August, over 70% of affiliated agencies have received at least one payment for the services rendered in July. Under MSC, this would have only been reimbursed in late August/early September. Almost every organization has documented activities in MediSked and training events have been very well-attended by a highly engaged and committed Care Management workforce.

On top of these extremely positive signs, there remain significant hurdles. Many are without CHOICES access, impacting the ability to conduct intake or update DDP2s and other OPWDD records. MediSked faces issues with basic functionality and critical reporting features are not yet available to our affiliates due to security requirements. Perhaps even more challenging is the fluid movement of members between tiers each month, with those designated as Tier 4 facing the potential of an unwanted change in Care Manager due to the caseload cap—even if they are not part of the Willowbrook class. Despite these challenges, the 7 CCOs are united and are actively coordinating to get these issues resolved expeditiously.

While the positive aspects are encouraging, we will not rest until these challenges are overcome. Each hurdle is a test of the resiliency of this new coordination model and the people whose hard work is bringing it to life.We are humbled by the responsibility NYS has placed on us to lead the way, identify solutions, and advocate for our affiliates and the 25,000+ people looking to us for support. As always, we thank you for your partnership in this enormous undertaking.

— Jay Nagy, CEO

Newsletter Bulletin, Volume 4: Milestones from Our First Month of Care Management

ACA has released Newsletter Bulletin, Volume 4 for our affiliate network.

Read milestones from our first month as a CCO, as recounted by CEO Jay Nagy:

The good news is that we all survived the first month of CCOs and Care Management! The bad news is that it's going to take more work to really deliver on the potential that Care Management holds for the people we support and their families. If you're like me, you may focus on the challenges—all the work still to come. But as we look past this first month, it's important to recognize what this team has already accomplished: 

  • Thousands of activities were logged in MediSked and ACA has been billing claims on a weekly basis. More importantly, the State has been paying claims about 10 days after submission. The first checks from ACA are on their way to providers at this very moment. 

  • Hundreds of Care Managers participated in the ACA webinar training earlier this month. We're constantly exploring ways to connect such a vast, dispersed team. Stay tuned for more on that over the coming weeks. 

  • As of today, ACA employs almost 50 full-time staff members (48, to be exact). It's hard to believe we began this undertaking less than a year ago, with only one person on staff until April 2018. By this time next year, we will number around 1,000!

Thank you for your continued partnership and patience. Nothing as important as the work we do changes overnight and each of us plays a crucial role in ensuring the long-term success and sustainability of this transition. 

— Jay Nagy, CEO