Caregiving

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.

Defining Caregiving

What We Mean by Caregiving

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)

Language Matters

“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.

For Disabled People Receiving Care

Your Rights

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

Types of Care Arrangements

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

Managing Caregivers

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

Family as Caregivers

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.

For Family Caregivers

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

Taking Care of Yourself

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

Financial Considerations

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

Navigating Difficult Dynamics

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.

Paid Caregiving

For Care Workers

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

For People Hiring Caregivers

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

The Caregiving Workforce

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

By Country

United States

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

Canada

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

United Kingdom

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

Australia

Programs:

NDIS (National Disability Insurance Scheme) for eligible people
Aged care programs
Carer Payment and Carer Allowance

Resources:

Carers Australia
NDIS (ndis.gov.au)

When Care Relationships Aren’t Working

Warning Signs

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)

Getting Help

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

Abuse Reporting

Who to contact:

Adult Protective Services (US)
Police for immediate danger
Disability rights organizations
Ombudsman programs (for facility care)

Resources

For Disabled People

Centers for Independent Living
Protection and Advocacy agencies
Disability rights organizations
Self-advocacy organizations

For Caregivers

Family Caregiver Alliance (caregiver.org)
ARCH National Respite Network
National Alliance for Caregiving
Local caregiver support programs

For Care Workers

National Domestic Workers Alliance
Hand in Hand: The Domestic Employers Network
Local worker centers

Help Build This Page

What’s your experience with caregiving—giving or receiving? What resources and guidance should be added?

Share through our [contribution form] or email wiki@disabilitywiki.org.

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