Issue Description:

It is widely felt by individuals with intellectual and developmental disabilities (I/DD) and their families that Medicaid is by far the MOST important of all programs that fund and regulate the services on which their lives depend.  Recent proposals by some in Washington, which seek to significantly cut Medicaid funding or impose block grants or other Medicaid caps would be disastrous for individuals with disabilities and their families.

People with I/DD are not idle, nor are they in need of passive babysitting.  They are often capable and strongly desirous of living active lives of community inclusion and civic engagement; lives of dignity, work, self-determination, and self-improvement. But they must have the appropriate supports in place in order to lead such lives.

Home and Community-Based Services (HCBS) provide opportunities for Medicaid beneficiaries to receive services in their own home or community rather than in institutions or other isolated settings.  While HCBS are not mandated by the federal government, New Jersey has spent decades building an I/DD service delivery system under this model. Medicaid funding cuts would dismantle the system that people with disabilities and their families have been fighting for their whole lives.  Another consequence of inadequate Medicaid funding is the switch to a managed care model for support services. This system severely limits individuals and families’ choice in providers of support services.

As baby boomers and individuals with I/DD live longer, the need for Medicaid-funded services is certain to increase. It is up to our legislators to ensure that funding increases rather than decreases in order to meet the needs of individuals with I/DD.  Imposing Medicaid cuts, or switching to a per-capita cap or block grant model, will not help individuals and families in New Jersey.  Rather, such cuts would essentially pit different groups (people with disabilities, seniors, children, mothers, low-income adults) against one another to fight to maintain their services.

Issue Action Items:

  1. Effectively advocating for Medicaid continuity and protection through messaging (All)
  2. Improving the performance of support coordinators in their knowledge of Medicaid rules and regulations (State)
  3. Ensuring clarity on Medicaid decision-making and overall processes through documented information and transparency (Federal/State)

Next Steps:

  1. Organize information to react quickly to threats to Medicaid utilizing publications from NJACP, the Arc and the Boggs Center. Create fact sheets, family and advocate-friendly one-page bulletins and alerts. Compile “New Jersey Stories” about how peoples’ lives are affected by Medicaid. Build generic resources around Medicaid information.
  2. Educate support coordinators on the provision of accurate Medicaid rules, possibly by coordination with DDD and providers. Connect and circulate family experiences to benefit less-informed recipients of Medicaid benefits.
  3. Engage directly with CMS and NJ Medicaid (DHS) for more and clearer documentation on basic and more involved practices and procedures. Create regular dialogue and relationship-building with Medicaid directors and staff.
  4. Set up a think tank to create an organization and fund the above efforts by July 2019.
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