Special Love for the Special You: ACANY at AFDN's Autism Month Program Launch & Press Conference

Advance Care Alliance of New York is honored to have participated in the Autism Month launch and press conference organized by the Alliance for Families with Developmental Needs.

ACANY CEO Jay Nagy addressed the audience of members and families on the importance of supporting people in getting timely diagnosis in tandem with ensuring community support in providing integrated comprehensive supports and services. Alongside him on the program were parents from the NYC Chinese community who shared their experiences. Many spoke on the importance of breaking the stigma around I/DD within the Asian American community through education and advocacy.

Participating in AFDN’s powerful launch and press conference aligns with ACANY’s mission of centering members and their families through advocacy. We are proud to have participated in such a powerful event!

ACANY team at the Alliance for Families with Developmental Needs launch and press conference for Autism Month

ACANY team at the Alliance for Families with Developmental Needs launch and press conference for Autism Month

Presenters and leaders of the Autism Month program launch and press conference

Presenters and leaders of the Autism Month program launch and press conference

ACANY Takes on the New York Presbyterian Autism Awareness Community Outreach Fair!

On National Autism Awareness Day, the ACANY Intake Department tabled at the Autism Awareness Community Outreach Fair to educate people on how they can enroll for care coordination services. The outreach fair was presented by the New York Presbyterian Autism Task Force, a team of providers from New York Presbyterian, Center for Autism and the Developing Brain.

The fair was held for families to obtain information and support for individuals who are diagnosed with Autism Spectrum Disorder. This was the first ever fair of its kind and will be held annually moving forward! We can’t wait to come back next year!

Interested in joining our lovely Intake Department? Apply to be the Intake and Benefits Access Coordinator today!

Autism Awareness Community Outreach Fair.jpg

National Developmental Disabilities Awareness Month: Reflections of a Care Manager

The month of March is National Developmental Disabilities Awareness Month. Since its public proclamation in 1987, we have come a long way from the institutional model of care towards person-centered and community-based care. This is thanks to the hard work and advocacy of people with I/DD, families, communities and professionals which continue today.

In honor of Developmental Disabilities Awareness Month, ACANY Care Manager Sarah Byrdsong shares reflections on her personal journey and the importance of care management. Check it out below:

ACANY Care Manager,  Sarah Byrdsong

ACANY Care Manager, Sarah Byrdsong

Developmental Disabilities Awareness Month is a great way to acknowledge individuals with developmental disabilities. It's a great time of year!  Acknowledging and celebrating individuals with I/DD is fantastic—this month and all-year-round!  Working with individuals with I/DD is outstanding. At one point in my life, I was temporarily unable to perform my day-to-day tasks by myself due to an injury. This experience added to the empathy I have for people for whom that is a permanent experience.  It is important that support is available and delivered in a way that is both respectful and empowering.

Doing this job fits with my morals and values and I love what I do! It is important to me that individuals with I/DD get to experience life or do basic things we take for granted. In this role, a commitment to teamwork is important.  We all need to work together.  I stay enthusiastic because I KNOW that the people I work with WILL succeed at what they set out to do. One person was accepted and now attends the NYU Tandon Disability Studies Consultants Program.  She is now a consultant! Consultants help teach NYU students about disability. I am oh so proud of her! Individuals with developmental disabilities deserve a full life!

Kennedy Dash and mother, Florence Dash

Kennedy Dash and mother, Florence Dash

The work of ACANY Care Managers like Sarah makes a huge impact on the families we support. Another family sent this testimonial to ACANY on Sarah’s contributions:

I would like to take a moment to applaud your agency for your services. I have been receiving services for Kennedy for many years and I rarely come across someone who is both efficient and supportive. My daughter and I love Mrs. Byrdsong and I wouldn’t want to work with anyone else. She is always available to assist us and she is extremely informative about programs and services I might not be aware of.

I can’t say enough to express how very pleased my family is with Mrs. Byrdsong. She is indeed a rare gem.

— Florence Dash

Do you have any reflections this Developmental Disabilities Awareness Month? Feel free to share your story with us by emailing hrdepartment@myacany.org.

Newsletter Bulletin, Volume 13: What You Need to Know on Managed Care

ACA has released Newsletter Bulletin, Volume 12 for our affiliate network. 

Read CEO Jay Nagy’s message below:

What You Need to Know on Managed Care

Back in December, I shared some of the exciting opportunities shaping up for 2019, one of which was managed care. While it’s still early in the timeline, the people you support and their families may already have questions about this sensitive topic. You will continue to serve as a critical source of truth to them during these confusing times and we want to make sure you have the background you need to take on this responsibility.

The first thing to keep in mind is that only NYS Medicaid-funded services are impacted by this transition to managed care. If a person has Medicare or commercial insurance through family or work, those services remain unchanged and unimpacted. In those cases, only the HCBS waiver services a person receives (e.g. residential, habilitation, supported employment, self-direction, etc.) will transition into managed care. If someone gets "State Plan services” (e.g. medical/hospital, behavioral health, dental, pharmacy, etc.) through NYS Medicaid, then those services will also move into managed care under an integrated insurance plan. Depending on a person’s circumstances, different services are subject to the managed care transition. This has been and will continue to be a major source of confusion to families—and it’s something you can help clear up quickly when asked.

This spring, the “early adopters” will announce limited insurance plans covering Medicaid State Plan services (i.e. the non-waiver services/benefits a person may receive). Enrollment in these plans will be on a purely voluntary basis. The expectation is that these plans will eventually also cover waiver services, but there will initially be limited information available.

Following the “early adopters,” the state will approve “SIPs-PL” (Specialized I/DD Plans—Provider Led) sometime in late 2019 or early 2020. These plans will cover all the NYS Medicaid-funded services someone with I/DD might receive. If family members want to be in the same plan as their loved one, they are eligible for enrollment as well. ACA and its CCO partners upstate are applying to offer such a plan and we look forward to sharing more news on this over the coming months. Enrollment in these plans will initially be voluntary but, based on OPWDD’s current timeline, it will become mandatory by 2021.

People will be able to move around/change plans at all times and OPWDD expects to see a choice of plans before making enrollment mandatory. By 2020, everyone will have much more information on the various options and will be able to make an informed choice for themselves or their loved ones.

When choosing a managed care plan, it pays to consider all the options and ACA is working to deliver a solution that meets the needs of the people we support and their families. Stay tuned!

—Jay Nagy, CEO

Newsletter Bulletin, Volume 12: Advancing Our Work in 2019

ACA has released Newsletter Bulletin, Volume 12 for our affiliate network. 

Read CEO Jay Nagy’s message below:

Improving Our Work with Clinical Support Services

I hope 2019 is off to a great start for the extended ACANY family! Back in December, I wrote to you about some exciting changes that are coming, including the introduction of managed care and our overall growth as an organization. I’ll come back to these two in the weeks ahead.

For my first message of 2019, I want to share about the work of the new ACANY clinical support services team—a resource that we hope will become more familiar and accessible to you over time. Though still growing, this new team is already making an impact. In a recent consult, they were able to help a Care Manager drill into the supports that a person needed and help connect the family with the right resources before they had to make an extreme choice.

The situation was particularly challenging: the family of a young woman enrolled in ACANY wanted her to be admitted for acute psychiatric care because “she was acting out.” Many of you, if not all, have probably supported people in similar circumstances. While sometimes a person truly needs inpatient care, it is rarely the first course of action and should only be pursued once all layers of the onion have been peeled back to get at what is really happening. 

In this case, the family had just gotten a new puppy over the holidays. This was when the young woman’s “behavior” started to become unbearable for her family. Oftentimes, what we think is the cause of the “problem” is not actually the root cause, but just another symptom. The clinical team was able to identify this and bring in NYSTART and a respite provider.

As the saying goes, “all behavior is communication.” Having partners who can help fully evaluate the situation and bring in the right resources will help ACANY deliver better supports to the people we serve. This will put us in great shape for the future under managed care.

—Jay Nagy, CEO

Newsletter Bulletin, Volume 11: Looking Back on Our Growth in 2018

ACA has released Newsletter Bulletin, Volume 11 for our affiliate network. 

Read CEO Jay Nagy’s message below:

Looking Back on Our Growth in 2018

Open Future Learning.  https://www.facebook.com/open.futurelearning/ . Accessed 5 Dec 2018.

Open Future Learning. https://www.facebook.com/open.futurelearning/. Accessed 5 Dec 2018.

With the end of the year upon us, I want to wish each of you a wonderful holiday season, whichever holiday you may observe. For many of us, this is a time for celebrating, being with those we love and reflecting on the major accomplishments of the past year. It’s also a time to look forward to the adventures in the New Year, both personal and professional.

At ACA, we have much to be proud of and much to be excited about going into 2019: 

  • The organization now employs more than 300 people and we look forward to welcoming another 700+ within the next six months!

  • In addition to the continued onboarding of affiliated Care Management teams, we’ve started hiring the clinical talent who will reinforce your efforts to provide more holistic coordination and supports to the people enrolled with us.

  • We’ve made significant progress in assuring service delivery and timely documentation. While some challenges remain, MediSked is more stable, user-friendly and familiar to all—a trend we expect to continue into next year.

  • We've begun working with designers to launch a new website, which will be welcome news for many! As the project advances, we will update you and give early previews, if possible.

  • We continue to develop regional “hub” sites to supplement the space secured from transitioning agencies. A strong local presence benefits the people we support as well as current and future staff, anchoring ACA in the community and providing more options in terms of physical space.

  • We also look forward to sharing updates in 2019 about the final managed care requirements (SIP-PL) and how ACA will be positioned in that process.

Lastly, I hope you are all able to take some time away from work to recharge. But before you do, please take a moment to think about the holidays from the perspective of those we support. Have you asked what they’d like to do (if anything) to celebrate? Are there any community holiday events they’d like to attend? Any winter treats or activities they’ve always wanted to try? Many people say this is their favorite time of year; let’s make sure ACA is doing everything we can to make it special for the communities we support.

—Jay Nagy, CEO

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