The Facts: Intellectual and Development Disabilities (I/DD)
What Is “I/DD?“
“I/DD” – the acronym for Intellectual and Developmental Disabilities is a term used to describe certain disabilities (cognitive, behavioral and physical) that occur before the age of 21 and affect functioning and skills, including communication, mobility, social and self-care.
How Many People in NYS Are Affected by I/DD?
Approximately 1-3% of the state’s population lives with I/DD – that’s around 120,000 people.
What Challenges Do People With I/DD Face?
Throughout the course of life, at various stages and ages, many people with I/DD may:
- Learn differently or at a slower pace.
- Require specialized supports and assistance.
- Have complex medical and/or behavioral health conditions that make their care more difficult to manage.
- Have trouble finding qualified providers and accessing the services they need – particularly physical and mental health services.
- Struggle trying to get what they need in a service system that is unfamiliar with their needs and doesn’t always work well together in harmony.
Care for People With I/DD in New York State Is Evolving for the Better!
New York State has been exploring options to improve upon the support systems that have been built for people with I/DD over several decades in an effort to:
- Improve service quality and outcomes
- Provide improved coordination of services
- Ensure the stability and sustainability of the I/DD service delivery system into the future
- Accommodate new people coming into the system and those with changing needs
- Control spending
One option, which has been a primary focus of this effort, is the development of a “managed care” model for the delivery of care and services to New York State residents with I/DD – a model which would be led by those who provide the care and services.
What Is Managed Care?
Managed care is essentially a type of health insurance. In addition to helping ensure that a person with I/DD receives the services he/she needs, and that those services are well coordinated, Medicaid managed care is a “payment system” in which a Managed Care Organization (MCO) receives funding from the state and federal government that will be paid to a group or network of providers for the delivery of some or all of a person’s medical, behavioral health and developmental disability services.
Want to learn more about managed care? Click here.
With an eye toward moving the delivery of care and associated services for people with I/DD to a managed care model, the New York State Department of Health (DOH) and the Office for People with Developmental Disabilities (OPWDD) have developed a 2-phase plan:
PHASE 1: Creation of Care Coordination Organizations
The first phase in OPWDD’s efforts to improve the delivery of services came on July 1, 2018, when it introduced Care Coordination Organizations (CCOs).
What is a CCO?
A Care Coordination Organization or CCO is an organization formed and operated by developmental disability service providers. It is a specialized “Health Home” that works exclusively with people with intellectual and developmental disabilities and their families to coordinate health AND developmental disability services. Specialized Care Managers develop and guide the implementation of an integrated, comprehensive care plan (known as a “Life Plan”).
What Is a (CCO) Health Home?
A Health Home is not a building or a place. It is a program in which a person with I/DD works closely with a specially trained Care Manager, who helps him/her better understand and manage their care and get the services and supports they need to stay healthy and live a full life. CCOs provide Health Home Care Management, coordinating care that combines developmental disability services and supports with health and wellness services to provide more options, greater flexibility and better outcomes.
What Is a Care Manager?
CCOs are staffed by Care Managers with training and experience in the field of developmental disabilities. Care Managers work directly with the CCO’s members and their families to ensure that the member’s Life Plan is fully implemented, services are provided, and that their needs are being met.
What is a Life Plan?
Care Managers work with a member and the important people in his/her life to complete an assessment* that reflects the member’s individual goals, dreams and preferences. The information obtained through these conversations is then used to develop a personalized Life Plan, that incorporates health and behavioral health services, community and social supports, and other services needed to keep the member healthy and assist in achieving his/her goals.
*Note: The assessments completed by CCO Care Managers to develop Life Plans are different than those currently being conducted by OPWDD (through a company called Maximus). OPWDD assessments are referred to as CAS (Coordinated Assessment System) Assessments. Additional information on CAS Assessments can be found here: https://opwdd.ny.gov/providers/coordinated-assessment-system-cas. CAS information, when available, is incorporated into the Life Plan development process.
What are my options to access a CCO in New York State?
There are seven Care Coordination Organizations operating across New York State:
| Care Coordination Organization | Areas Served |
|---|---|
 |
New York City, Long Island and the Lower Hudson Valley
|
 |
Hudson Valley, Capital region, North Country, Central and Southern tier |
 |
Western New York, the Finger Lakes and the Southern Tier |
| CareDesign | New York City, Long Island, Hudson Valley, Capital region and the North Country |
| Prime Care Coordination | North Country, Central and Southern tier and Western New York |
| Southern Tier Connect | Central and Southern tier |
| Tri-County Care | New York City, Long Island, Hudson Valley, Capital region |
Phase 2: Establishing the Rules for Managed Care
Shortly after the launch of CCOs in July 2018, New York State released draft guidance for a proposed version of specialized managed care called “Specialized I/DD Plans – Provider Led” (SIPs-PL). This name refers to the fact that this envisioned model of managed care for individuals with I/DD would be led by those who provide the care and services.
Following a period of public comment, the guidance was updated, and a second draft was issued for public comment in February 2020. The Office for People with Disabilities and the Department of Health continue to review the comments received, along with options and a potential timeline for rolling out the SIPs-PL model in New York State.
Why Provider Led?
The “Provider Led” model ensures that the new managed care plans will be governed and controlled by experienced and dedicated disability services providers, rather than by corporate insurance companies. These I/DD providers have decades of experience advocating for and providing supports and services for people with I/DD and their families – providers that you and your family may know and have worked with for years.
When/if approved, the SIPs-PL model will be expected to offer rich provider networks that include options in all key service areas, and to advocate for services where there are gaps.
Three of New York State’s Care Coordination Organizations Join Forces
To improve care for people with I/DD.
MyCompass is a partnership between three of New York State’s seven Care Coordination Organizations (CCOs), which has been forged to develop a model of care for better supporting individuals with Intellectual/Development Disabilities (I/DD) statewide into the future.
The MyCompass partnership include
- Advanced Care Alliance
- LIFEPlan
- Person Centered Services
Some facts about our partnership:
- All three CCOs are I/DD provider led, and familiar partners to many of the people now receiving care.
- Our organizations currently coordinate care for over 60,000 individuals with I/DD, covering all 62 counties within New York State
- Our CCO partners represent the largest network of I/DD service providers in New York, with 200+ affiliated non-profit agencies.
- Combined, we employ over 2,000 dedicated care managers, with offices in every region of the state. This means we can offer non-profit values with best-in-class services.
- The partnership plans to leverage the group’s size, expertise, and statewide reach to expand health-care choices, encourage and train providers to accommodate people with I/DD into their medical and dental practices, increase preventive care, and ultimately improve outcomes.
- It also helps ensure that proven, experienced Care Coordination Organizations in every part of the state are driving the future of care for people with I/DD, and that individuals and families are offered more choice while being empowered to make their own health-care decisions.
At MyCompass We Believe That
- Children and adults with intellectual and developmental disabilities deserve to live in the community where they can experience healthy and quality lives that include education, work, friends, and family.
- Services that support people with I/DD should promote individual growth and development, in community settings.
Our Mission
MyCompass empowers individuals with intellectual and developmental disabilities to live healthy, engaged and fulfilling lives by providing essential support and assistance to them and their families.
Our Vision
MyCompass seeks to empower every individual and family we serve to achieve and maintain their best life. To accomplish this, we will leverage our statewide presence, collective experience and commitment to innovation, individual choice and collaboration.