You or your loved one receive services through Maine’s waiver programs. But do you know what legal protections come with those services? The federal Home and Community-Based Services (HCBS) Settings Rule established rights that most families have never heard of—yet they fundamentally shape what quality support looks like. Understanding these protections changes everything about how you advocate.
WHAT IS HCBS AND WHY IT EXISTS
In 2014, the federal government passed the HCBS Settings Rule in response to decades of disability rights advocacy. Here’s what it says: if you receive Medicaid-funded services in Maine—through Section 21, Section 29, or other waivers—those services must be provided in ways that protect your autonomy, dignity, and community participation. No exceptions.
The rule was born from a hard truth: people with intellectual and developmental disabilities were being served in segregated facilities when community living was possible. The HCBS Settings Rule exists to change that. It mandates that federal dollars support real community lives, not congregate programs or institutional alternatives.
In Maine, this rule applies across all MaineCare waivers. It’s not a suggestion. Providers who don’t comply lose funding.
THE FIVE RIGHTS THAT CHANGE EVERYTHING
- Privacy, Dignity & Respect
You have the right to privacy in your living space—a door that locks, belongings that are yours, the ability to be alone. This sounds basic because it is. Most people take it for granted.
But in segregated settings, privacy is often controlled by staff. Someone else decides when you can close your door, what you can keep, who can enter. The HCBS rule says that ends. Your space is yours. Your privacy is protected.
Dignity means something equally important: you’re not subjected to coercion or restraint simply because a program finds it convenient. Staff can’t force you into activities you don’t want to do. They can’t talk down to you or about you as if you’re not present. You’re treated as a person whose preferences matter.
- Choice & Autonomy
You decide how you live. What time you wake up, what you eat, who visits, what you do with your time. These aren’t small things—they’re the foundation of a life that feels like yours.
Choice extends deeper. You choose which services you receive and who provides them. If you want something different from what’s currently planned, you can say so. Your disagreement doesn’t get dismissed. It gets heard and addressed in your service plan.
This is person-centered planning—a legal requirement, not a courtesy. It means your goals, preferences, and vision for your life drive the plan. Not the program’s structure. Not staff convenience. You.
- Community Access & Integration
This is where the HCBS rule gets specific about what “community” actually means. Not a disability-specific day program in a building with only people receiving services. Not a sheltered workshop. Real community—regular jobs alongside co-workers without disabilities, shopping at neighborhood stores, joining clubs, attending church, building friendships with people you choose.
The distinction matters legally. Settings that isolate people from broader community are presumed institutional, even if they’re well-run. The HCBS rule says: if services happen in segregated settings, Medicaid won’t pay for them.
- Legal Protections
If you live in housing operated by a service provider, you have a lease or other legally enforceable agreement. This isn’t paperwork—it’s protection. It means you can’t be evicted on a whim. You have rights as a tenant.
You also control your own money. Period. You’re not required to hand over income, benefits, or personal funds to a program. If you need support managing money, staff help you. But the decision about how your money is spent is yours.
- Dignity of Risk
Here’s a concept that changes how services work: dignity of risk. It means you have the right to make choices, even if those choices carry risk.
Adults without disabilities make risky choices every day—taking a new job, moving to a new place, trying something unfamiliar. We don’t prevent someone from living just because living involves risk. The HCBS rule says the same applies to you. You deserve the autonomy to take risks and learn from them, not to be protected so completely that you never really live.
WHAT THIS LOOKS LIKE IN REALITY
Person-centered planning isn’t theoretical. It shows up in everyday decisions:
You want to work at a local coffee shop instead of attending a day program. The plan reflects that.
You prefer evenings alone to group activities. That’s respected.
You disagree with a staff recommendation about medication or housing. Your perspective is documented and considered, not overruled.
You have a friend who isn’t part of the disability service system. You spend time together without staff supervision or restrictions.
You live in a regular apartment on a regular lease, decorated how you want, with people you chose.
These aren’t accommodations. They’re baseline rights.
MAINE’S IMPLEMENTATION & ONGOING COMMITMENT
Maine submitted its final HCBS compliance plan to the federal government in 2022 and received approval. The state uses a monitoring system called Evergreen—a data platform that tracks individual information, provider performance, and service delivery in real time. When issues arise, Maine identifies them quickly.
Case managers across Maine are trained on HCBS rights and responsible for explaining these protections to individuals and families. Person-centered planning is built into MaineCare policy for Section 21, Section 29, and all other waiver programs.
Maine takes compliance seriously. Providers found in substantial non-compliance face corrective action plans and, if necessary, disenrollment from Medicaid.
QUESTIONS THAT REVEAL QUALITY
When you’re evaluating services, ask:
Where does programming happen? Community businesses and spaces, or a disability-specific facility? Real integration looks different from proximity.
Who shaped the service plan? The individual’s stated goals, or the program’s existing offerings? Person-centered means the individual comes first.
What happens if someone wants to change direction? Is the response flexible, or defensive? Good programs adapt. Poor ones resist.
How is money handled? Does the individual have direct access and control, or does staff mediate every purchase?
What does “choice” actually mean here? Is it real autonomy or limited menu of program options?
How are rights communicated? Do individuals and families receive clear information about protections, or is it assumed?
These questions reveal whether a program honors HCBS in spirit or just compliance.
HOW FAMILIES MATTER INC EMBODIES THESE PRINCIPLES
Families Matter Inc operates entirely in community settings. No facility-based programs. No congregate day services. All support happens in real community—jobs, volunteering, recreation, home life in regular apartments or homes.
Our 3:1 staff-to-individual ratio means people get genuine person-centered planning, not a checkbox exercise. Staff have time to know individuals deeply—their preferences, dreams, challenges, strengths. That relationship foundation makes dignity of risk possible.
Staff are trained on HCBS requirements and the philosophy behind them. We understand that supporting someone’s autonomy sometimes means allowing choices we might not make ourselves. That’s dignity of risk in practice.
Person-centered planning at Families Matter Inc starts with: what matters to you? What do you want your life to look like? Then we build support around that vision, not the other way around.
IF SOMETHING ISN’T RIGHT
If you believe your HCBS rights are being violated:
Talk directly first. Many issues get resolved through honest conversation with your case manager or service staff.
File a complaint with Maine DHHS. The Office of Aging and Disability Services investigates complaints about HCBS violations. They have authority to require corrective action.
Contact disability advocacy. Maine’s Developmental Disabilities Council advocates for people with disabilities and can help navigate the process.
Your concerns matter. They strengthen the entire system.
YOUR RIGHTS AREN’T NICE TO HAVE
The HCBS Settings Rule represents decades of work by disability advocates who refused to accept segregation as inevitable. It codifies what should be obvious: you deserve community life, autonomy, dignity, and choice.
Understanding these rights is your first step to demanding them. Advocating for them—for yourself or your loved one—is how quality improves across Maine’s entire service system.
Questions about HCBS rights or how they apply to your specific situation? Our Assistant Directors work within this system daily and understand both the protections and how to ensure they’re real, not just theoretical.
Reach out anytime:
- Hallowell: Jane Lerette – 207-621-1023
- Gardiner: Erica Poulin – 207-203-0004
- Skowhegan: Melinda King – 207-612-2992
- Waterville: Debra Wells – 207-616-3284