For a number of years, the NYS Office for People with Developmental Disabilities (OPWDD) has explored the possibility of moving everyone with intellectual/developmental disabilities (I/DD) to mandatory enrollment in Medicaid Managed Care. This was accelerated with Care Management for All, an initiative that came out of the original Medicaid Redesign Team in 2011, aimed at moving all Medicaid benefits and all people served by Medicaid into some form of care management. Many people were previously exempt or excluded from mandatory enrollment, depending on their circumstances. From this initiative grew several managed care models, including Managed Long Term Care, Health and Recovery Plans, and Health Homes.
The first step in moving to managed care for people with I/DD was 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.
If managed care were to be implemented for people with I/DD, individuals, parents and family members would 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.
As part of a larger project to provide managed care related support and technical assistance to the provider community, Managed Care Community of Practice, Medicaid Matters conducted focus groups in June 2019 regarding information and outreach related to the State’s transition to Medicaid Managed Care for people with 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 were still in the dark about the transition to managed care. The findings were intended to inform the work going forward to ensure timely, relevant information is shared in the most effective ways with individuals and family members across the state. The 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 focus group report is available here.
In February 2020, OPWDD issued a revised draft document laying out the qualifications for entities that would become managed care organizations in New York State (referred to as SIPs-PL, or Specialized I/DD Plans-Provider Led). Medicaid Matters provided comments on the document, after extensive review of the document through the lens of consumer interests and discussion with coalition members and partners.
Several organizations have written about the impact managed care has had on access to services and meaningful care coordination in states where managed care for people with I/DD has already been implemented, including Manatt Health (February 2020); the Council on Quality and Leadership, with the Institute for Public Policy on People with Disabilities, and Mosaic (August 2019); and Community Catalyst’s Center for Consumer Engagement in Health Innovation (November 2019).