Resources and information

Focus groups with individuals with I/DD and parents to inform our work | November 2019

As part of the work with the Managed Care Community of Practice, Medicaid Matters conducted focus groups in June regarding information and outreach related to the State’s transition to Medicaid Managed Care for people with intellectual/developmental disabilities (I/DD).  The focus groups with individuals and parents (which were done separately) in New York City and Binghamton were intended to help inform our work on stakeholder engagement, education and outreach related to the transition to managed care.

Focus group participants helped us confirm what we knew anecdotally: many individuals and family members are still in the dark about the transition to managed care.  Our findings will help inform our work going forward to ensure timely, relevant information is shared in the most effective ways with individuals and family members across the state.  Our findings will also inform our work to assist the Office for People with Developmental Disabilities make sure people are aware of what managed care is, how it may impact them or their loved ones, and much more.

The report is available for download here.

Education and outreach for individuals with developmental disabilities and their families | August 2019

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.

Fair Hearing Rights Changing for MLTC and Managed Care Members | April 2018

On May 1, 2018, New York State will implement massive changes in appeal rights for members of Medicaid managed care plans, including members of Managed Long Term Care plans.  These changes in federal Medicaid regulations governing Medicaid managed care plans were made by the Obama Administration.  Plan members must first request an internal "plan appeal" by the managed care or MLTC plan, and receive an adverse appeal decision by the plan, before requesting a fair hearing.  This article, by the New York Legal Assistance Group, explains the new appeals procedures, and the few exceptions to the requirement to "exhaust" the plan appeals, with a comparison to the existing procedures.  The article includes links to slides and a recording of a webinar on this topic as well.

New York Legal Assistance Group prepared a fact sheet for consumers which describes the changes and explains what people can do if they need help or more information.

MLTC Tip Sheets | June 2017

The Workgroup for People with Medicare and Medicaid, a project of the Coalition to Protect the Rights of New York’s Dually Eligible (CPRNYDE), created tip sheets about Managed Long Term Care (MLTC) that are written in easy-to-understand language.  These educational materials were written alongside people who are covered by MLTC and their caregivers, as well as individuals who may need MLTC in the near future.  The members of the Workgroup assert that aspects of MLTC are not transparent enough and people need to learn more about their rights in simple language.  The Workgroup is comprised of New Yorkers with Medicare, Medicaid, and long-term care needs as well as their caregivers.

The three tip sheets are on who is eligible for MLTC, how to enroll, and on the rights of people on MLTC.

The Workgroup hopes these tip sheets help those who may be confused, concerned, or unaware of different aspects of MLTC, and that they help individuals better understand how to enroll in the MLTC plan that is best for them, as well as their rights once they are enrolled in a plan.

MLTC Report | July 2016

Mis-Managed Care: Fair Hearing Decisions on Medicaid Home Care Reductions by Managed Long Term Care Plans, June-December 2015

With the New York Chapter of the National Academy of Elder Law Attorneys, MMNY issued a report to shed light on the findings of an extensive study of fair hearing decisions on reductions of personal care and Consumer Directed Personal Assistance services hours by Managed Long Term Care (MLTC) plans.  The report makes specific policy recommendations to address the need for better oversight and monitoring of plan activities.

The report was featured in a story in the NYTimes on July 21, 2016.

See our press release on the report here.

The Need and Vision for a New York State Medicaid Managed Care Ombudsman Program | October 2012

The creation of the State's "Care Management for All" initiative represents a sea change in how and where people with disabilities or chronic illnesses access care through the Medicaid program.  This creates the need for an advocacy program specializing in consumer education, community training, and advocacy services tailored to meet the unique needs of these populations.

Medicaid Matters New York proposes a Medicaid Managed Care Ombudsman Program to meet the advocacy needs of people newly-enrolled in Medicaid Managed Care or some form of care management under "Care Management for All."

Recipients would benefit from: learning how to access services in a managed care environment; help in securing a change in or restoration of benefits, services, or supports; advocacy to obtain accommodations for their disabilities; and the fruits of systemic advocacy addressing patterns such as improper notices, inadequate networks or accommodations, or unlawful care management practices.  There are various programs and services currently provided to the target population that offer similar elements contemplated by the program design.  There is not, however, sufficient capacity within the current disability and legal services networks to provide the proposed level of service without a significant increase in resources.

This proposal is designed to expand and target advocacy services to reach a group of people numbering as many as 1.5 million who will be entering managed care for the first time in the next few years.  It is intended to drive resources to the various groups in local communities that serve the newly mandated populations in order to strengthen their capacities and competencies and target help for this new wave of people as they enter and adjust to various.  The emphasis of the program is to strengthen local capacity and improve disability literacy and accommodations in managed care settings, and it recognizes the complexity of the work involved in serving those with multiple and profound needs.

The full proposal is available here.

Managed Care in Medicaid Redesign | February 2011

It is clear the State is interested in moving more populations into mandatory Medicaid managed care and reducing the number of services that are excluded, or carved out, of the managed care benefit package.  We support efforts to increase care coordination and integration.  However, any proposal to increase care management must include critical elements if it is to be successful in improving outcomes and reducing costs, particularly for consumers with multiple, high-cost service needs.

Download our principles document here.