Our Right to Remain

Our homes. Our communities. Our right to remain.

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Jocelynn Helmbrecht is a published writer, disability advocate, nonprofit leader, and mother of three boys. Her middle son, Wesley, had significant disabilities and passed away at the age of twenty-four in February 2026. Jocelynn has more than two decades of lived and professional experience navigating disability services and Medicaid HCBS. She is the founder of Our Right to Remain, where she works to make disability policy understandable, amplify the voices of people with disabilities and their families, and advocate for the right to live and receive services in the community.

Advocacy

Legislative aides to US Senators by state

This working directory can be used for reaching the staff person most likely to handle Medicaid, HCBS, disability, or health policy in each U.S. senator’s office. Many Senate offices do not publish detailed issue portfolios. The May 2026 advocacy directory sometimes lists the relevant Legislative Assistant/Aide rather than a person with “Health” in the title.

Senator roster and D.C. phone numbers were checked against the official U.S. Senate roster on Aug. 27, 2026. Staff names are primarily from AAFP’s May 2026 Congressional Staff Directory.

Emailing our Congressional leaders is helpful. Often, however, we receive auto replies or a reply that had nothing to do with the subject we were writing them about in the first place. I developed this list wondering if it might be helpful to reach out to their legislative aide as well.

I recommend asking for that person by name but confirming that they still handle Medicaid/HCBS before giving a long explanation. Share your story and why HCBS and Medicaid are important for your loved one. Let them see this isn’t about policy, it is about people.

us_senate_medicaid_hcbs_disability_aides_2026_by_state ORTRDownload
Call to action

For those who would like a script when calling their Senator, here are some ideas:

Hi, my name is [NAME], and I’m a constituent from [CITY].

I’m calling to ask Senator [NAME] to support and cosponsor S. 5321, the HCBS Access Act.

This bill would is important to our community because [Add a person reason why HCBS matters to you or your family.]

Please ask Senator [NAME] to support the HCBS Access Act.

Thank you.

NATIONAL ADAPT has listed on their website (https://nationaladapt.org/call-to-action)

“Ask your Senators to email Calli_Shapiro@lujan.senate.gov to sign on to the HCBS Access Act in support of making home- and community-based services mandatory, making Money Follows the Person (MFP) permanent, and fulfilling the promise of Olmstead through community integration.” 

Helpful Resources

HCBS Advocacy Coalition: A coalition of 20+ national disability and aging organizations specifically working on HCBS, community integration and implementation of the HCBS Settings Rule. It also has advocacy tools people can actually use.

Olmstead Rights: OlmsteadRights.org is a resource for people with disabilities, families, self-advocates, and legal advocates seeking to understand the rights established by the landmark Supreme Court decision Olmstead v. L.C. The site was created by the Disability Integration Project of the Atlanta Legal Aid Society and offers plain-language information about the right to receive services in the most integrated setting appropriate, along with self-advocacy tools, legal resources, state-specific resources, and stories from people whose lives have been affected by Olmstead.

https://www.olmsteadrights.org

National Disability Rights Network (NDRN): The National Disability Rights Network (NDRN) is the nonprofit membership organization for the nation’s federally mandated Protection and Advocacy (P&A) Systems and Client Assistance Programs. These organizations protect the legal and civil rights of people with disabilities in every state and U.S. territory. NDRN provides disability-rights advocacy, policy information, legal resources, and information on issues including community integration, Medicaid and HCBS, employment, education, and protection from abuse and neglect.

https://www.ndrn.org

Centers for Medicare & Medicaid Services (CMS)

The Centers for Medicare & Medicaid Services (CMS): The federal agency responsible for administering and overseeing Medicaid, including Home and Community-Based Services (HCBS). Its HCBS resources provide information about Medicaid waiver programs, federal requirements, the HCBS Settings Rule, person-centered planning, and state compliance. CMS is an important primary source for understanding the federal policies and regulations that govern how states provide Medicaid-funded services in home and community settings.

https://www.medicaid.gov/medicaid/home-community-based-service