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  • Chatequa Pinkston

Self-Advocates: Learn More About Your Medicaid Services Rights

Three people are posing in what may be a rock structure on a hiking trail outdoors. The person in the middle uses a wheelchair.

It’s essential that those receiving Medicaid Home- and Community-Based Services understand the rules that govern these services so they can advocate for themselves and others. With the help of national advocacy organizations, FL SAND’s Breaking Barriers Training Academy (BBTA) is setting out to educate Florida's self-advocates on these rules.

BBTA recently presented, “This Rule Rules! The Home and Community-Based Services Settings Rule and You!” in two webinars in October and November funded by a grant from Self-Advocates Becoming Empowered (SABE). The information was developed by the Autistic Self-Advocacy Network (ASAN), from their Home- and Community-Based (HCBS) rules tool kit. The workshops were presented by the FL SAND Fellows, along with support from the Florida Developmental Disabilities Council and Disability Rights Florida.

The purpose of the workshop was to educate iBudget waiver recipients who receive HCBS about their rights. This article will highlight the information covered in the workshop.

Community Living Versus Institutions

There are differences between community living and living in an institution. Community living encourages independence and inclusion by promoting disabled and non-disabled people living in the same neighborhoods and for people with disabilities to choose where to live. According to the ASAN Toolkit, institutions are “Places where a lot of disabled people live. People living in institutions usually did not decide to live there. They were usually put there by someone else. The HCBS rule says a place is an institution if it has space for 16 or more people with disabilities to live there.”

All HCBS rights and rules must be followed in order for services providers to be paid from Medicaid. If providers do not follow these rules, then they do not get paid!

Your Rights Under the HCBS Rules

If you receive Home- and Community-Based Services, you have the right to

  • Choose where you will live and receive services. HCBS rules say that you can receive services at home or out in the community.

  • Choose and change providers at any time.

  • Be in charge of a person-centered plan. This is a document that tells what type of services you will receive. It is written in a meeting between you, your support coordinator, and anyone else that you want to be present.

  • Have freedom. Your provider must allow you to make little and big decisions. Everyone can make decisions, but it may take some longer to express them or require a tool to help them to make their desires known.

  • Have respect and privacy. You have the right to receive the same respect and privacy as anyone else.

  • Not be restrained or secluded (secluded means being left by yourself or separated from other people). You cannot be held down or handcuffed by your provider. Also, you cannot be secluded in a room.

Rules for Providers and Provider-owned Settings

Sometimes, an HCBS provider owns the place where one lives or receives services. For example, a group home or other shared-living setting. There are special rules for these provider-owned settings:

  • Tenant rights. In these settings you are the tenant, and your provider is the landlord. As a tenant you get the same rights as other tenants living in the community.

  • Extra privacy rights. You must be able to lock your door, pick your roommate, and decorate your room and house the way you would like.

  • Physical accessibility. If you use a wheelchair, the place where you live and work during the day must be accessible.

  • Having visitors. You can have anyone as a visitor at any time, including overnight.

  • Getting food. You get to choose when and what you want to eat.

If one needs help with any of these, their HCBS providers must help them. These are some things an HCBS services client can do if they feel like the HCBS rules are not being followed:

  • Talk to your support coordinator.

  • Talk to a friend, family, another provider, or someone else you trust.

  • Discuss with your regional Family Care Council or APD regional manager.

  • Call the Disability Rights Florida intake line at (800) 342-0823.

In conclusion, HCBS rules have been put in place to protect people with disabilities who receive services in the home and community. They protect the rights and choices of self-advocates. The rules empower you to be able speak up and say where you want to live and spend your time. Use this information to make quality choices for yourself and to educate other people with disabilities.

This article is only a summary of the HCBS rules. You are encouraged to further research this topic. You can find a list of resources on this topic below. Also, Follow the Florida Self-Advocacy Central Facebook page to learn when BBTA will be presenting the webinar again.

Florida HCBS ADVOCACY COALITION. (2021, March 5).

The HCBS settings rule and you - Autistic Self Advocacy Network.

Disability Rights Florida.

Florida Developmental Disabilities Council.

Agency for Persons with Disabilities


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