The Care Crisis

Written By Allies for Allies

Every day, millions of families provide care that makes it possible for someone they love to live safely, participate in their community, and navigate everyday life.

For families and individuals,  supporting people with autism, intellectual and developmental disabilities (IDD), Down syndrome, rare diseases, and other complex support needs, caregiving can mean much more than helping with everyday tasks. It may include supporting communication, personal care, routines, transportation, appointments, therapies, behavioral needs, safety, and other highly individualized needs.

This work is done with tremendous love, intention and commitment.

Realistically, intention doesn't create more hours in the day. It doesn't make specialized caregivers easier to find. And,  it doesn't make qualified care more affordable.

Country-wide,  families and individuals are carrying an enormous amount of care themselves, often while working, raising other children, managing households, navigating complex service systems, and trying to protect their own well being.

This is the care crisis, and understanding it helps explain why Allies for Allies exists.

Family Caregiving Is an Essential Part of America's Care System

Family caregiving isn't a small or isolated issue.

According to the Caregiving in the U.S. 2025 report from AARP and the National Alliance for Caregiving, approximately 63 million Americans, nearly 1 in 4 adults, provided ongoing care to an adult or a child with a complex medical condition or disability during the previous year. That's an increase of approximately 20 million caregivers in just a decade.

And the amount of care families and individuals provide is enormous. AARP's Valuing the Invaluable 2026 analysis estimates that 59 million family  and individual caregivers supporting adults provided 49.5 billion hours of care in 2024. If that care were valued at the cost of comparable paid services, it would be worth approximately $1.01 trillion. Put another way, family and individual caregivers are providing the equivalent workload of nearly 24 million full time workers.

These aren't simply statistics. They represent parents, siblings, spouses, grandparents, relatives, friends, and guardians stepping in every day to provide care that has to happen, whether adequate outside support is available or not.

The Need for Specialized Care Is Growing

For families and individuals with complex care needs, finding a caregiver isn't necessarily the same thing as finding the right caregiver. A family or individual may need someone who understands autism, IDD, communication differences, sensory needs, behavioral support, mobility challenges, medical complexity, or other individualized needs.

That distinction is at the heart of the care gap. One of the most difficult and often overlooked challenges families or individuals face is finding trusted, specialized support from someone with appropriate experience. Families and individuals encounter scattered resources, complicated systems, and platforms that weren't created around the realities of complex care.

The need is substantial. The CDC's most recent autism data, published in 2025 and based on 2022 data, found that approximately 1 in 31 eight year old children were identified with autism across 16 communities participating in the CDC's Autism and Developmental Disabilities Monitoring Network. That's about 3.2% of the children studied.

As more children or individuals  are identified with autism and other developmental support needs, families or individuals need systems capable of connecting them with appropriate services and people who understand those needs.

The Care Crisis Is Also a Time Crisis

One of the least visible consequences of inadequate caregiving support is how dramatically it can affect ordinary life.

Imagine needing to schedule a doctor's appointment but having no one qualified to stay with your child or loved one. Or, needing to work while simultaneously trying to coordinate care. Or, realizing that grocery shopping, exercising, attending another child's school event, getting a haircut, or simply having a few uninterrupted hours to rest requires finding someone capable of providing specialized support.

For many families and individuals , these aren't unusual situations. They're everyday logistics.

Even devoted caregivers need opportunities to work, complete errands, attend appointments, care for themselves, and simply have time to breathe. When reliable support isn't available, burnout and isolation can follow.

National caregiving research reinforces that picture. Nearly 1 in 4 caregivers provides 40 or more hours of care each week, while approximately one third have been providing care for at least five years.

For many families and individuals , caregiving isn't something that simply happens around everyday life. Everyday life has to be organized around caregiving.

There Is a Financial Crisis Behind the Care Crisis

The cost of caregiving isn't limited to the amount a family or individual pays someone to provide care. Families or individuals can experience financial consequences from several directions at once. 

A parent or guardian may need to:

  • Reduce working hours

  • Arrive late or leave work early

  • Decline career opportunities

  • Use savings to cover care

  • Take on debt

  • Pay privately when funded services aren't available

  • Leave the workforce altogether

The 2025 national caregiving study found that nearly half of caregivers experienced at least one major financial impact related to caregiving, including taking on debt, stopping savings, or having difficulty affording necessities.

Caregiving frequently overlaps with employment. Approximately 6 in 10 family caregivers are employed while providing care, and half of those working caregivers reported disruptions to their jobs because of their caregiving responsibilities.

That means the financial question isn't simply "How much does caregiving cost?" It's also "What does a family or individual lose when appropriate care isn't available?" Income. Career opportunities. Savings. Time. Flexibility. And sometimes financial stability itself.

Finding Help Shouldn't Become Another Full Time Job

Families or individuals navigating complex care needs may interact with health care systems, schools, insurance companies, state programs, agencies, respite services, therapists, providers, funding programs, waitlists, and caregiver directories. Finding help can become its own job.

Families and individuals can spend countless hours navigating systems that weren't built around their needs while searching for specialized resources, providers, and appropriate caregiver vetting.

When information is scattered across different organizations and systems, families and individuals are left to connect the pieces themselves. They shouldn't have to become experts in every system simply to find support.

The Care Crisis Can Become an Isolation Crisis

Some effects of the care gap are difficult to capture in statistics. For example, isolation.

Families or individuals  may become disconnected from friends, activities, employment, community, or even other families who understand what they're experiencing. Families, caregivers, and Remarkable Humans can feel misunderstood or unseen, particularly in public spaces. Caregivers may find themselves continually explaining needs, interpreting behaviors, advocating for accommodations, or helping others understand the person they support.

Without strong support networks, families or individuals can also become disconnected from resources, peers, and others who understand their day to day experiences. That's why addressing the care crisis requires more than simply increasing the number of caregiver listings online.

The Four Parts of the Care Gap

At Allies for Allies, we see four interconnected needs behind the care crisis:

Resources. Families and individuals  need trusted, relevant information and easier ways to find specialized support.

Time. Care recipients need dependable care that allows them to work, run errands, attend appointments, care for other family members, or simply take a break.

Connection. No one should have to navigate caregiving alone. Community, shared experiences, trusted organizations, and meaningful relationships matter.

Understanding. Remarkable Humans deserve to be understood as whole people, while families, individuals,  and caregivers deserve tools that make communicating unique needs easier.



Why Allies for Allies Exists

Allies for Allies wasn't created from a theoretical understanding of this problem. It grew from lived experience.

Founder Alison Pincus and her family experienced firsthand how difficult navigating specialized support could be after her son Wyatt (who has a rare chromosomal microdeletion disorder, intellectual and developmental disabilities, and autism) began his own journey.

What started as one family's search for answers and support revealed a much larger problem: families everywhere were searching for care, resources, connection, and understanding, often on their own.

Allies for Allies was created to help build something different. Through our free care platform, families can connect with specialized caregivers, while Allies for Allies helps reduce barriers through caregiver screening and financial support for qualifying families.

But finding care is only one part of the mission. We're also working to make trusted resources easier to find, creating opportunities for community and connection, and helping remarkable humans move through the world with greater understanding.

Behind Every Number Is a Family

It's easy for a conversation about the care crisis to become a conversation about statistics.

63 million caregivers. 49.5 billion hours. $1.01 trillion in unpaid care. 1 in 31 children identified with autism in the CDC's monitored communities.

But those numbers represent people. A parent trying to keep a job while making sure their child is safe. A caregiver who can't remember the last time they had an afternoon to themselves. A family searching for someone they can trust. A sibling learning to help. A guardian navigating another waitlist. And a Remarkable Human who deserves to be understood for who they are, not reduced to a diagnosis or support need.

At Allies for Allies, we use the term Remarkable Humans because we believe in honoring people's individuality without allowing labels to define their potential.

Our goal is to make sure families don't have to carry everything alone, because care shouldn't come at the expense of a caregiver's well being. Because meaningful support shouldn't depend entirely on income. Because finding specialized care shouldn't require navigating a maze. And because every Remarkable Human deserves to be seen, supported, understood, and included.

Every ally deserves an ally.

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