Disability Advocacy Organizations Resources

Use this page to find national-level advocacy resources on Home and Community-Based Services (HCBS) and the Centers for Medicare and Medicaid Services (CMS) final rule regarding HCBS in the Medicaid program.

HCBS Advocacy Coalition Settings Rule Toolkit

The HCBS Advocacy Coalition has created a toolkit to help stakeholders learn more about the HCBS Settings Rule and how to advocate in your state. The toolkit contains three documents:

  1. The Medicaid HCBS Settings Rule: What You Should Know!
  2. The Medicaid HCBS Settings Rule: Heightened Scrutiny
  3. How to Advocate for Truly Integrated Community Settings

The Council on Quality and Leadership Videos

About the Rule: View essential information about how the rule will promote choices, independence, and community for people receiving supports.

Residential Settings: Find out about the various requirements placed on providers involving residential settings.

Rights Restrictions: Learn about the impact of the HCBS Settings Rule on rights restrictions and modifications for people.

A Call To Action: Discover how to share information about the rule for providers and people receiving supports.

What is the Home & Community Based Settings (HCBS) Rule?

Resources from Disability Advocacy Organizations

February 19, 2020: The Community Living Policy Center at Brandeis University, with contribution from the HCBS Advocacy Coalition, held a webinar on Best Practices in the HCBS Settings Rule: Bringing HCBS to the 21st Century that covered the recently released heightened scrutiny technical paper, the ASAN toolkit and the HCBS Advocacy Coalition outcomes document.

February 2020: The Community Living Policy Center at Brandeis University, with contribution from the HCBS Advocacy Coalition, released a new policy brief “Identifying, Evaluating and Remediating “Settings That Isolate” in the Context of CMS Guidance on Heightened Scrutiny Requirements within the HCBS Settings Rule.” This brief includes an analysis and recommendations for states and stakeholders around the heightened scrutiny process.

January 2020: It is critical that state agencies and stakeholders have on-going conversations about how to measure the progress of the HCBS Settings Rule implementation. A white paper with recommended outcomes produced by national subject matter experts is now available.

November 20, 2019: “Easy to Read” HCBS Autistic Self Advocacy Network (ASAN) Settings Rule Toolkit by the Autistic Self Advocacy Network (ASAN) answers questions about the HCBS Settings Rule, including 1.) What is community living? 2.) What is an institution? 3.) What are home and community-based services (HCBS)? 4.) What does the HCBS Settings Rule say? 5.) What rights does the HCBS Settings Rule give me? And 6.) What rules do HCBS providers have to follow?

July 30, 2019: Fact Sheet on House Rules from CQL

February 22, 2018: FAQ – HCBS Settings Rule & What is Required from AUCD

March 13, 2018: A Self-Advocates Guide to HCBS Advocacy from QLC

March 13, 2018: Assisting People with Developmental Disabilities to Advocate for their HCBS Services

July 2015: Getting the Community Life You Want by The Boggs Center on Developmental Disabilities. As a person who receives services funded by Medicaid, some changes in federal policy give you new opportunities to have the kind of community services you want. This guide breaks down the changes to help you understand them.

January 12, 2015: New Opportunities for Individuals with Disabilities to Expect Better Quality Services and Outcomes by Collaboration to Promote Self-Determination – This issue brief places the new HCBS rule in historical context of the evolution of home and community-based services and offers a vision for how the new rule can improve HCBS.

October 11, 2014: ASAN Toolkit and Webinar Series on Improving HCBS by the Autistic Self Advocacy Network (ASAN) published this toolkit for advocates, families, and administrators on how to ensure that people with disabilities receive Medicaid-funded HCBS in integrated settings that offer full access to the community.

June 2014: Just Like Home: An Advocate’s Guide for State Transitions Under the New Medicaid HCBS Rules by the National Senior Citizen’s Law Center – This guide provides government officials and stakeholders with multiple aspects of the new regulations, including determining which settings are disqualified for HCBS, and enforcing consumer protections.

May 15, 2014: Service & Setting Assessment Worksheet for Advocates by the DD Network Partners includes the regulatory language and CMS guidance in an easy-to-use format to help advocates think about the HCBS settings in their state and help their state make accurate and comprehensive assessments.


One thought on “Disability Advocacy Organizations Resources

    Jewish Journal said:
    January 26, 2017 at 4:13 am

    […] govern which programs can receive federal funding with Medicaid dollars for what is called Home and Community Based Services (HCBS) designed to pay for supports and services outside of […]

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