Education and outreach for individuals with developmental disabilities and their families

Aug 9, 2019 | Managed Care

New York State is implementing a system of Medicaid Managed Care for people with intellectual and developmental disabilities (I/DD).  The New York Alliance for Inclusion and Innovation is currently undertaking a project to prepare providers of services to people with I/DD for the move to managed care.  Referred to as the Managed Care Community of Practice (MC-COP), the project aims to provide readiness training and technical assistance to any interested provider (the project is not restricted to New York Alliance members).

Medicaid Matters New York is working with the New York Alliance to increase and enhance outreach and education for individuals with I/DD and their families.  The services for people with I/DD – which include residential, vocational, medical, psychological services, and more – have never been provided through Medicaid Managed Care.  Individuals with I/DD, parents and family members need information about (including, but not limited to):

  • What managed care is and how a system of managed care will provide for their needs;
  • Who will be responsible for their universe of needs and who to turn to when/if their needs are not being met; and
  • What their rights are in a managed care context.

Medicaid Matters will collaborate with self-advocacy and parent and family groups and organizations for knowledge and expertise specific to people with I/DD and their needs. 

Stakeholder engagement work will include (but will not be limited to):

  • Analysis and assessment of what people need and want to know about the transition to managed care;
  • Development and dissemination of informational materials; and
  • In-person presentations at meetings, program events, and conferences.

For more information and to sign up to receive email updates, go to

An acronym guide, glossary of terms, and language guide are available here.

The first step in moving to managed care for people with I/DD is the requirement that everyone with I/DD in Medicaid be enrolled in a Care Coordination Organization (CCO), effective July 2018.  The services provided by a CCO are intended to replace the Medicaid Service Coordination (MSC) program, and each enrollee is assigned a care manager.  The seven regional CCOs are responsible for assessing the needs of their enrollees and initiating a process for the development of a life plan (which is intended to replace and be more comprehensive than a person’s individualized service plan, or ISP).

Each CCO has a designated care management contact person.  Anyone who experiences difficulty with their care manager, the assessment process, the development of the life plan, or any other matter is encouraged to contact the CCO care management contact person.  Each OPWDD regional office has a designated CCO support liaison.  If the CCO care management contact person is not helpful in addressing a person’s concerns, the OPWDD regional office CCO support liaison should be contacted.