10 Helpful Resources for Families Navigating Disability and Complex Care

Finding support for disability or complex care needs can feel overwhelming. Families are often expected to know where to go, what to ask for, and how to navigate systems that were never designed to work together.

The resources below are not one-size-fits-all solutions. Each one helps in a different way. Some are useful when you are trying to understand your options. Others support caregivers directly, especially when the emotional weight of care starts to add up.

We’ve grouped these resources by how families most often use them, so you can start where it feels most relevant.

When You’re Trying to Understand Your Rights, Benefits, and Options

These resources are helpful when you are early in the process or feel unsure about what support exists.

USA.gov – Disability Services
https://www.usa.gov/disability-services

This is a strong starting point for understanding federal disability benefits, caregiver pay programs, ADA protections, and employment-related rights. Families often use it to get clarity on what programs exist and where to begin.

USA.gov – Getting Paid as a Caregiver
https://www.usa.gov/disability-caregiver

This resource explains when and how family members may be paid for providing care, depending on state programs and eligibility. It’s commonly used by families exploring whether caregiving can be financially supported.

CDC – Information for Family Caregivers
https://www.cdc.gov/disability-and-health/about/information-for-family-caregivers.html

The CDC’s caregiver pages focus on caregiver health and well-being. Families often turn to this resource to better understand caregiver stress, injury risk, and why caregiver health matters.

When You’re Looking for Education, Tools, or Peer Support

A great, recently published book that families in the disability find useful is called "Everything No One Tells You About Parenting a Disabled Child" by Kelley Coleman. In a digestible way, it lays out "all the things" parents and caregivers need to know about navigating systems and accessing supports for their kids and loved ones.

These organizations focus on supporting caregivers with information, structure, and connection.

Family Caregiver Alliance (FCA)
https://www.caregiver.org

FCA offers practical guides, condition-specific resources, and caregiver education. Families often use it to learn how to organize care responsibilities and understand what long-term caregiving can look like.

Caregiver Action Network (CAN)
https://www.caregiveraction.org

CAN provides peer support, caregiver stories, and educational content. Many caregivers use it to feel less isolated and learn from others navigating similar challenges.

When You’re Supporting a Child With Disabilities

These resources are commonly used by families caring for children and young adults.

Family Voices
https://familyvoices.org

Family Voices is a family-led organization focused on children and youth with special health care needs. Families often use it to navigate health care systems, education planning, and peer support.

ChildCare.gov – Services for Children With Disabilities
https://childcare.gov/consumer-education/services-for-children-with-disabilities

This resource helps families find child care and early learning supports that can accommodate disability-related needs. It’s especially helpful for parents balancing work and caregiving responsibilities.

When Caregiving Starts to Affect Your Mental Health

Caregiving can take a real toll over time. These resources focus on emotional well-being, burnout, and caregiver mental health.

National Alliance for Caregiving (NAC)
https://www.caregiving.org

NAC publishes research and resources focused on caregiver stress, burnout, and well-being. Families often use it to better understand how caregiving affects mental health and to see their experience reflected in national data.

How families use it:
To understand caregiver burnout
To learn how common caregiver stress is
To find research-backed insights

Mental Health America (MHA)
https://www.mhanational.org

MHA offers mental health screening tools and educational resources related to stress, anxiety, and depression. Caregivers often use these tools as a private way to check in on their own mental health.

How families use it:
To assess stress or burnout
To learn coping strategies
To find mental health resources by location

Caregiver Well-Being Index (via NAC)
https://www.caregiving.org/caregiver-well-being-index

This free tool helps caregivers reflect on their emotional, physical, and financial well-being. It’s often used as a self-check rather than a diagnostic tool.

How families use it:
To notice early signs of burnout
To reflect on personal well-being
To start conversations with family or support systems

How Families Often Use These Resources Together

Most families don’t rely on just one resource.

You might start by learning about benefits and rights, then turn to caregiver-focused organizations for education and peer support. Mental health resources often become more important over time as caregiving responsibilities grow or change.

Needs evolve, and it’s common for families to return to these resources at different points in their caregiving journey.

A Final Note

No single website can solve the challenges families face when navigating complex care. But the right information, at the right time, can reduce isolation and help families make more informed decisions.

If there’s a resource that has made a meaningful difference for your family, we’d love to hear about it. You can always reach us at community@truly.care.

‍