The National Down Syndrome Congress, together with other disability and aging advocacy groups, have issued a toolkit to help advocates push for strong implementation of the new Home and Community Based Services (HCBS) Settings Rules in their states. The new HCBS Settings Rules require all settings funded by Medicaid HCBS programs to, among other things, provide opportunities for participants to be integrated in and engage in community life, have access to the community, control their personal resources, and seek employment and work in competitive settings. States have until March 2019 to transition their HCBS programs into full compliance with the new settings requirements.
"Most adults with Down syndrome need support services to live and work in the community. The HCBS rules, part of the state/federal Medicaid program, are the manner in which these services are funded. Parents and self-advocates need to be aware of and advocate for strong enforcement of these new rules to ensure life choices based on the individual's needs and desires," said Susan Goodman, NDSC's Director of Governmental Affairs. All states have already submitted to the Center for Medicare and Medicaid Services (CMS) their initial transition plans, and CMS has provided feedback to states about needed improvements and next steps for amending and implementing their plans. "The next several months are a critical time for advocacy because that is when states will be making important decisions about their transition plans," she said.
This new toolkit provides advocates with detailed information about the HCBS Settings Rule and provides action steps for advocates to impact implementation of the new rules in their states.
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