This page addresses caregiving from multiple perspectives: disabled people receiving care, family members providing care, and the broader systems that shape caregiving relationships. We center disabled people's autonomy and expertise while acknowledging the realities caregivers face.
Caregiving encompasses assistance with daily living activities, medical tasks, and support that enables someone to live their life. This includes:
- Personal care (bathing, dressing, toileting)
- Health-related tasks (medication management, medical procedures)
- Mobility assistance
- Household tasks (cooking, cleaning)
- Transportation
- Communication support
- Emotional support and companionship
- Administrative tasks (managing appointments, paperwork, benefits)
"Caregiver" vs. "Care partner" vs. "Attendant":
Different terms reflect different relationships:
- Caregiver: Common term, but some disabled people find it implies dependence
- Care partner: Emphasizes mutual relationship
- Personal attendant/Personal care assistant (PCA): Professional language emphasizing it's a job
- Support person: Neutral term
The disabled person's preference for terminology should guide usage.
Avoiding "burden" language:
Disabled people are not burdens. Caregiving can be challenging—but the challenge comes from systems, not from disabled people's existence.
Autonomy in care:
You have the right to direct your own care, including:
- Choosing who provides your care
- Deciding how care is provided
- Setting your own schedule
- Making decisions about your life and body
- Declining care you don't want
- Privacy and dignity in care
Protection from abuse:
Caregiving relationships can involve power imbalances. You have the right to care free from:
- Physical, emotional, or sexual abuse
- Financial exploitation
- Neglect
- Control and coercion
Family caregivers:
Care provided by family members—can be unpaid or paid through programs.
Benefits: Familiarity, trust, flexibility
Challenges: Blurred boundaries, burnout risk, complex family dynamics
Paid personal attendants:
People hired specifically to provide care.
Benefits: Professional boundaries, training, you're the boss
Challenges: Finding reliable workers, turnover, managing employees
Agency-provided care:
Care through home health agencies.
Benefits: Agency handles hiring and backup, may have training
Challenges: Less control over who comes, agency policies, cost
Self-directed care programs:
Programs that let you hire and direct your own caregivers, often including family.
Benefits: Maximum control, can hire people you trust
Challenges: Administrative burden, being an employer
When you direct your own care:
Hiring:
- Be clear about duties and schedule
- Interview for fit and reliability
- Check references
- Trust your instincts
Training:
- You're the expert on your care needs
- Demonstrate how you want things done
- Be patient with learning curves
- Speak up if something isn't working
Communication:
- Be direct about needs and preferences
- Address problems early
- Give feedback (positive and constructive)
- Maintain appropriate professional boundaries
When things go wrong:
- Document problems
- Address directly with caregiver
- Know termination procedures
- Report abuse or serious issues to appropriate authorities
When family provides care, boundaries matter.
Setting boundaries:
- You're an adult even when receiving care
- Care assistance doesn't equal control over your life
- Caregiver family members need their own lives too
- Establish clear expectations
Maintaining relationships:
- Separate caregiving time from family time when possible
- Both parties need outlets outside the care relationship
- Consider bringing in outside help to preserve family relationships
When family care isn't healthy:
Sometimes family care relationships become controlling or abusive. Warning signs include:
- Caregiver making decisions without your input
- Isolation from other relationships
- Financial control
- Emotional manipulation about "everything they do for you"
You have the right to seek alternative care arrangements.
¶ Understanding Your Role
Supporting autonomy:
The person you care for is an adult with the right to make their own decisions—even decisions you disagree with. Your role is to support their independence, not manage their life.
What this means:
- Ask how they want things done
- Follow their lead
- Don't assume you know better
- Respect privacy
- Support their relationships and activities
Caregiver burnout is real:
Signs of burnout:
- Exhaustion
- Resentment
- Declining own health
- Isolation
- Depression or anxiety
- Feeling trapped
Prevention and addressing burnout:
Get help:
- Use respite services
- Accept offers of help
- Bring in paid caregivers for some tasks
- Share caregiving among family members
Maintain your life:
- Keep relationships outside caregiving
- Continue activities you enjoy
- Protect time for yourself
- Don't give up everything
Get support:
- Caregiver support groups
- Counseling
- Connecting with others in similar situations
Paid family caregiving:
Programs that pay family caregivers vary by country and state/province. Options may include:
- Medicaid self-directed programs (US)
- Veteran caregiver programs (US)
- Provincial programs (Canada)
- Direct payments (UK)
- NDIS self-managed (Australia)
Financial impacts of caregiving:
Unpaid caregiving has significant economic effects:
- Lost wages and career advancement
- Retirement savings impacts
- Out-of-pocket expenses
- Benefits access challenges
Planning:
- Understand available programs
- Consider long-term financial impacts
- Explore all benefit options
- Plan for transitions
When you disagree with care recipient's choices:
They have the right to make their own decisions. Your options:
- Express concerns respectfully
- Provide information
- Accept their decision
- Maintain boundaries about what you will/won't do
When you need a break:
You cannot provide good care when burned out. Taking breaks:
- Is necessary, not selfish
- Benefits the person you care for
- Can be brief (hours) or extended
- Requires planning and backup care
Transitioning out of caregiving:
Sometimes care relationships need to change:
- Person's needs exceed what you can provide
- Your own health or circumstances change
- Relationship becomes unhealthy
- Other care options become available
Ending caregiving doesn't mean ending the relationship.
Know your rights as a worker:
Care workers have labor rights including:
- Minimum wage (domestic workers now covered in US)
- Overtime rules (vary by jurisdiction)
- Safe working conditions
- Freedom from harassment
- Workers' compensation
Common challenges:
- Low wages
- Lack of benefits
- Irregular hours
- Physical demands
- Emotional labor
Where to get support:
- Domestic worker organizations
- Labor unions
- Worker centers
- Legal aid organizations
Being a good employer:
If you employ caregivers:
- Pay fair wages
- Be clear about expectations
- Respect their time
- Provide safe working conditions
- Maintain professional boundaries
- Handle tax and employment law requirements
Employment responsibilities:
- Withholding taxes (if required)
- Workers' compensation insurance
- Compliance with labor laws
- Record keeping
Who provides care:
Care workers are disproportionately women, immigrants, and people of color. They're often underpaid and undervalued.
Disability justice perspective:
Good disability policy requires good caregiving policy. Disabled people's liberation is connected to care workers' liberation. Fair pay and working conditions for care workers makes better care available.
What disabled-led organizations are saying:
Organizations like ADAPT and NCIL advocate for:
- Living wages for care workers
- Self-directed care options
- Care worker training and career paths
- Recognition of care work's value
Programs:
- Medicaid Home and Community-Based Services (HCBS)
- Self-directed care options vary by state
- Consumer-directed programs
- Veteran caregiver programs
- Medicare home health (limited)
Family caregiver payment:
Some states allow Medicaid payment to family caregivers. Programs include:
- Cash and Counseling
- Self-directed waiver programs
- Participant-directed services
Resources:
- ARCH National Respite Locator
- National Alliance for Caregiving
- Family Caregiver Alliance
- State aging and disability agencies
Programs:
- Home care varies by province
- Tax credits for caregivers
- Employment Insurance compassionate care benefits
- Some provinces pay family caregivers
Resources:
- Provincial home care programs
- Canadian Caregiver Network
Programs:
- Direct payments
- Personal budgets
- Carer's Allowance
- Carer's Assessment (right to assessment of own needs)
Resources:
- Carers UK
- Local authority adult social care
- Age UK
Programs:
- NDIS (National Disability Insurance Scheme) for eligible people
- Aged care programs
- Carer Payment and Carer Allowance
Resources:
For care recipients:
- Feeling controlled rather than supported
- Anxiety about caregiver's reactions
- Decisions being made without you
- Isolation from others
- Financial irregularities
For caregivers:
- Persistent resentment
- Declining physical or mental health
- Substance use increasing
- Relationship deteriorating
- Abuse (giving or receiving)
If you're being abused:
- Disability-specific domestic violence resources
- Adult Protective Services
- Protection and Advocacy agencies
- National Domestic Violence Hotline
If caregiving isn't sustainable:
- Respite services
- Transition to paid care
- Facility care if appropriate
- Care management services
Who to contact:
- Adult Protective Services (US)
- Police for immediate danger
- Disability rights organizations
- Ombudsman programs (for facility care)
- Centers for Independent Living
- Protection and Advocacy agencies
- Disability rights organizations
- Self-advocacy organizations
- Family Caregiver Alliance (caregiver.org)
- ARCH National Respite Network
- National Alliance for Caregiving
- Local caregiver support programs
- National Domestic Workers Alliance
- Hand in Hand: The Domestic Employers Network
- Local worker centers
What's your experience with caregiving—giving or receiving? What resources and guidance should be added?
Share through our [contribution form] or email [email protected].
Last updated: November 2025
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