Home and Community-Based Care
All disabled people have the right to live in the community with the supports they need. The UN Convention on the Rights of Persons with Disabilities (CRPD) Article 19 affirms the right to live independently and be included in the community, with access to personal assistance and support services.
This page centers disabled people’s expertise on getting care in your own home and community—not in institutions.
Where Are You?
Section titled “Where Are You?”Jump to your country or region:
- Understanding Home and Community-Based Services
- United States
- Canada
- United Kingdom
- Australia
- Other Countries
Understanding Home and Community-Based Services
Section titled “Understanding Home and Community-Based Services”What This Means
Section titled “What This Means”Home and community-based services (HCBS) are supports that help disabled people live in their own homes and communities rather than in institutions like nursing homes, group homes, or residential facilities.
These services can include:
- Personal care assistance: Help with bathing, dressing, eating, toileting, transferring
- Home health services: Skilled nursing, therapy, wound care
- Homemaker services: Cleaning, cooking, laundry, shopping
- Respite care: Temporary relief for family caregivers
- Adult day programs: Structured activities during the day
- Transportation: Getting to appointments, work, community activities
- Assistive technology: Equipment that increases independence
- Home modifications: Ramps, grab bars, accessible bathrooms
- Care coordination: Help managing multiple services and providers
The Right to Community Living
Section titled “The Right to Community Living”Disabled people have organized for decades against institutionalization. Key principles:
Choice and control: Disabled people should decide where they live, who provides their care, and how they spend their time.
Real homes: People should live in their own homes or apartments—not facilities, even small ones.
Integration: Living as part of the community, not segregated.
Self-direction: Where possible, disabled people should be able to hire, train, and manage their own care workers.
Quality: Services should be adequate—not just “warehousing” people in the community instead of institutions.
United States
Section titled “United States”Legal Framework
Section titled “Legal Framework”Olmstead v. L.C. (1999): Supreme Court ruling that unjustified institutionalization is discrimination under the ADA. States must provide community-based services to people who can live in the community with support.
ADA and Section 504: Prohibit discrimination; support community integration.
Medicaid: Primary funder of HCBS for many disabled people.
Medicaid Home and Community-Based Services
Section titled “Medicaid Home and Community-Based Services”Medicaid is the largest payer for long-term services and supports (LTSS). Options include:
State Plan Services: Covered for all Medicaid beneficiaries who need them (personal care, home health).
1915(c) HCBS Waivers: Allow states to provide services not normally covered by Medicaid to help people stay in the community. Each state has different waivers with different eligibility and services.
1915(i) State Plan HCBS: Similar to waivers but as a regular state plan option.
1915(k) Community First Choice: Optional state program providing attendant services.
Money Follows the Person (MFP): Federal program helping people transition from institutions to community living.
Getting Services
Section titled “Getting Services”Step 1: Determine Medicaid eligibility
- Income and resource limits vary by state and program
- Some states have higher limits for HCBS than for regular Medicaid
- SSI recipients are automatically Medicaid-eligible in most states
Step 2: Apply for specific programs
- Contact your state Medicaid office or Area Agency on Aging
- Ask about available waivers and programs
- Be aware of waiting lists (can be months or years)
Step 3: Assessment
- A case manager or assessor determines your level of need
- This determines what services you qualify for and how many hours
Step 4: Choose providers
- You may choose from approved agencies
- Some programs allow you to hire anyone (self-direction)
- Family members can sometimes be paid caregivers
Self-Direction
Section titled “Self-Direction”Many states allow self-directed services, meaning you:
- Hire, train, and supervise your own workers
- Set your own schedule
- Have more control over your care
Self-direction options:
- Consumer-directed personal care through Medicaid waivers
- Cash and Counseling model programs
- Veterans’ Directed Care for veterans
The Waiting List Crisis
Section titled “The Waiting List Crisis”Many states have long waiting lists for HCBS waivers—sometimes years. This means:
- People stay in institutions who could live in the community
- People go without needed services
- People risk nursing home placement during emergencies
What to do:
- Get on waiting lists as early as possible
- Explore all available programs (you might qualify for more than one)
- Contact Centers for Independent Living for assistance
- Advocate for expanded funding
Medicare Home Health
Section titled “Medicare Home Health”Medicare (not Medicaid) covers limited home health services:
- Must be homebound
- Must need skilled care (nursing, therapy)
- Personal care alone isn’t covered
- Time-limited (not long-term care)
Who’s Organizing
Section titled “Who’s Organizing”ADAPT has fought for community living since the 1980s, pushing for Medicaid expansion, against nursing home bias, and for attendant services.
Not Dead Yet advocates against assisted suicide and for community living resources.
National Council on Independent Living (NCIL) represents Centers for Independent Living working on HCBS policy.
SABE (Self-Advocates Becoming Empowered) advocates for people with intellectual and developmental disabilities to live in the community.
Canada
Section titled “Canada”Provincial Responsibility
Section titled “Provincial Responsibility”Healthcare and disability services are provincially administered, so programs vary significantly.
Types of Services
Section titled “Types of Services”Most provinces provide:
- Home care/home support: Personal care, homemaking
- Community living services: For people with developmental disabilities
- Direct funding programs: Some provinces allow self-directed care
- Respite care: Through various programs
Provincial Examples
Section titled “Provincial Examples”Ontario:
- Ontario Health provides publicly funded home care
- Self-Directed Funding option available for some
- Developmental Services Ontario (DSO) coordinates services for people with developmental disabilities
- Long waiting lists for many services
British Columbia:
- Health authorities provide home support
- Choice in Supports for Independent Living (CSIL) allows self-direction
- Community Living BC provides services for people with developmental disabilities
Alberta:
- Home care through Alberta Health Services
- Self-Managed Care option
- Persons with Developmental Disabilities (PDD) program
Who’s Organizing
Section titled “Who’s Organizing”People First of Canada advocates for people with intellectual disabilities to live in the community.
Independent Living Canada and provincial IL organizations support self-directed living.
Provincial disability organizations advocate for HCBS expansion.
United Kingdom
Section titled “United Kingdom”Social Care System
Section titled “Social Care System”In England, adult social care is provided by local authorities (councils) under the Care Act 2014.
Assessment: Contact your local council for a care needs assessment. If eligible, you’ll receive a care and support plan.
Eligibility: Based on care needs (not diagnosis). Must have significant impact on wellbeing.
Personal Budgets: Many people receive funding as a personal budget, which can be taken as:
- Direct payment (you manage the money)
- Council-managed budget
- Individual Service Fund (held by a provider)
Self-Directed Support: Direct payments allow you to hire your own personal assistants, including family members in some cases.
Regional Differences
Section titled “Regional Differences”- Scotland: Self-Directed Support (Scotland) Act 2013 provides strong framework for direct payments and choice
- Wales: Similar system with direct payments available
- Northern Ireland: Different structure; Health and Social Care trusts provide services
NHS Continuing Healthcare
Section titled “NHS Continuing Healthcare”For people with significant ongoing health needs:
- Fully funded by NHS (not means-tested)
- Covers nursing care, personal care, and more
- Difficult to qualify for; many denied and must appeal
Who’s Organizing
Section titled “Who’s Organizing”Inclusion London and other disability-led organizations advocate for social care reform.
Disabled People Against Cuts (DPAC) campaigns against austerity cuts to social care.
Independent Living movement in UK has fought for direct payments and self-directed support.
Australia
Section titled “Australia”National Disability Insurance Scheme (NDIS)
Section titled “National Disability Insurance Scheme (NDIS)”NDIS provides funding for disability supports for eligible Australians.
Eligibility:
- Under 65 when you apply
- Australian citizen/permanent resident
- Disability is permanent or likely permanent
- Disability substantially impacts daily life
What NDIS Funds:
- Support workers and personal care
- Therapies
- Assistive technology
- Home modifications
- Community access
- Support coordination
NDIS Plans: Individualized plans based on your goals and needs. Funding can be managed by:
- NDIA (they manage your funds)
- Plan-managed (a provider manages on your behalf)
- Self-managed (you control the funds)
Accessing NDIS
Section titled “Accessing NDIS”- Check eligibility and apply (Access Request)
- Gather supporting evidence
- Planning meeting to discuss goals and needs
- Receive your NDIS plan
- Implement plan with chosen providers
Aged Care for People 65+
Section titled “Aged Care for People 65+”People who become disabled after 65 aren’t eligible for NDIS. They access:
- Commonwealth Home Support Programme (CHSP)
- Home Care Packages
- Residential aged care
This is a significant gap—disabled people have organized against the age 65 cutoff.
Who’s Organizing
Section titled “Who’s Organizing”People with Disability Australia (PWDA) is a national cross-disability rights organization.
Every Australian Counts campaign advocated for NDIS establishment.
Young People in Nursing Homes National Alliance campaigns for young disabled people to live in the community, not aged care facilities.
Other Countries
Section titled “Other Countries”Principles That Apply Everywhere
Section titled “Principles That Apply Everywhere”The CRPD (Article 19) establishes that disabled people have the right to:
- Choose where and with whom to live
- Access support services including personal assistance
- Not be obligated to live in particular arrangements
Global South Realities
Section titled “Global South Realities”In many countries:
- Formal HCBS systems don’t exist
- Family provides most care (without support)
- Institutions (often poor quality) are the only “services”
- Community-based rehabilitation (CBR) programs exist in some areas
- Disabled people’s organizations are advocating for community living
Finding Support
Section titled “Finding Support”- Contact disability organizations (DPOs) in your country
- Research what government programs exist (if any)
- Connect with peer support networks
- Look into international NGOs working on disability in your region
Intersectionality
Section titled “Intersectionality”Race and HCBS
Section titled “Race and HCBS”Disabled people of color face:
- Less access to services due to systemic racism
- Cultural and language barriers
- Workforce that doesn’t reflect their communities
- Historical trauma affecting healthcare relationships
Who’s organizing: Organizations centering disabled people of color, culturally specific disability services.
LGBTQ+ and HCBS
Section titled “LGBTQ+ and HCBS”LGBTQ+ disabled people may face:
- Discrimination from care workers
- Unsafe or unwelcoming providers
- Need for affirming care environments
- Healthcare providers who don’t understand both identities
Who’s organizing: LGBTQ+ disability organizations, SAGE (for LGBTQ+ elders).
Rural Disability
Section titled “Rural Disability”Rural disabled people face:
- Severe provider shortages
- Long distances to services
- Limited agency options
- Lack of public transportation
Who’s organizing: Rural health organizations, telehealth advocates, rural disability groups.
Immigrants and Refugees
Section titled “Immigrants and Refugees”May face:
- Eligibility restrictions for public programs
- Language barriers
- Fear of engaging with government systems
- Cultural differences in views of disability and care
Self-Directing Your Care
Section titled “Self-Directing Your Care”What Self-Direction Means
Section titled “What Self-Direction Means”Self-direction means you:
- Recruit, hire, train, and supervise your workers
- Determine your own schedule
- Decide how your budget is spent (within program rules)
- Have control over your daily life
Benefits
Section titled “Benefits”- Care that fits your needs and preferences
- Flexibility in scheduling
- Workers you choose and trust
- Often more hours because you’re not paying agency overhead
Challenges
Section titled “Challenges”- Administrative responsibilities (payroll, taxes, etc.)
- Finding and keeping workers
- Managing when workers call out sick
- Requires organizational skills or support
Support for Self-Direction
Section titled “Support for Self-Direction”- Fiscal intermediaries: Handle payroll and taxes for you
- Support brokers: Help you navigate self-direction
- Peer support: Connect with others who self-direct
Scenarios: Finding What You Need
Section titled “Scenarios: Finding What You Need””I need help at home but don’t know where to start”
Section titled “”I need help at home but don’t know where to start””Contact your local Center for Independent Living (US), local council (UK), or equivalent in your country. They can assess your needs and explain available programs.
”I’m on a waiting list and need help now”
Section titled “”I’m on a waiting list and need help now””Explore all available programs—you might qualify for multiple. Contact CILs for assistance. Look into charitable programs. Document your needs for appeals.
”I want to hire my own workers, not use an agency”
Section titled “”I want to hire my own workers, not use an agency””Ask about self-direction options in your program. This may require switching to a different waiver or program. CILs can help you navigate.
”My family provides my care but they’re burning out”
Section titled “”My family provides my care but they’re burning out””Look into respite care programs. Some programs allow family to be paid as caregivers. Connect with caregiver support services.
”My care hours got cut and I can’t manage”
Section titled “”My care hours got cut and I can’t manage””Request reassessment. Document your needs carefully. Appeal the decision. Contact disability rights organizations for assistance.
Resources
Section titled “Resources”Global
Section titled “Global”- CRPD Article 19: International framework for community living
- International Disability Alliance: Global advocacy
United States
Section titled “United States”- ADAPT: adapt.org
- National Council on Independent Living: ncil.org
- CMS HCBS website: medicaid.gov/medicaid/hcbs
- Find your Center for Independent Living: ilru.org/projects/cil-net/cil-center-and-association-directory
Canada
Section titled “Canada”- Independent Living Canada: ilc-vac.ca
- Provincial disability organizations
United Kingdom
Section titled “United Kingdom”- Disability Rights UK: disabilityrightsuk.org
- Inclusion London: inclusionlondon.org.uk
- Local council adult social care
Australia
Section titled “Australia”- NDIS: ndis.gov.au
- People with Disability Australia: pwd.org.au
Contribute to This Page
Section titled “Contribute to This Page”Do you receive home and community-based services? Navigate the system? Advocate for HCBS policy?
Share your knowledge: Contribution Form
We especially welcome:
- Experiences navigating specific programs
- Self-direction tips and stories
- Information from countries not yet covered
- Strategies for getting more hours or better services
This page centers disabled people’s expertise. Community living rights were won through decades of organizing against institutionalization.