We’ve made significant strides as a society in removing the stigma around mental health. While there’s still more we can do, we’ve come a long way in acknowledging trauma and providing support for certain groups in our communities—veterans, survivors of natural disasters, or those who’ve escaped abusive relationships.
But there’s an overlooked group of incredibly vital people. They often receive little to no support and usually suffer in silence, too exhausted to advocate for themselves. They’re people we see and interact with daily, quietly carrying immense stress. I’m talking about parents and caregivers of children with disabilities and special needs.
These parents face a relentless, two-front war. On one side, there’s the never-ending responsibility of caring and advocating for their children. On the other, they’re battling through their own exhaustion, often neglecting their unmet mental and emotional needs just to get up and do it all over again.
It’s a clear recipe for burnout, but for these parents and caregivers, that is simply not an option. So they press forward —day after day, with no end in sight and no help on the horizon.
It’s time we acknowledge their struggles and prioritize meaningful parent support, including respite care services, for these families. These parents are the backbone of their families, but they need us to show up for them, too. It’s time to do more.
Parental Resilience Pushed to the Brink
Parent support is in short supply. Being a primary caregiver for any child in the U.S. is inherently challenging, stressful, isolating, and a full-time job.
Research has shown that the duties of motherhood alone—without even factoring in the needs of a child with disabilities or developmental delays—is comparable to working two-and-a-half jobs. Add the demands of caring for a child with autism, Down syndrome, or other special needs, and the challenges become insurmountable.
It’s a daily grind consisting of constant therapy appointments, heightened supervision, specialized caregiving tasks, and an unyielding need for advocacy. Combine these responsibilities with the usual stresses of life—work, bills, household duties—and it’s no surprise that studies reveal anxiety and depressive disorders are more rampant among caregivers of children with autism than those caring for neurotypical children. Developmentally delayed and disabled children are not the only ones in need of support; caretakers are also vulnerable.
Perhaps more surprising is the extent of the harm caused by this chronic stress. Researchers studying the stress profiles of mothers caring for children with autism found they were alarmingly similar to those of combat soldiers, Holocaust survivors, and those diagnosed with PTSD. Again, the caretakers of disabled and developmentally delayed children need a reprieve.
These caregivers love their children fiercely and wouldn’t trade their lives with them for anything. While their determination and resilience know no bounds, like any parent, they deserve a break.
Despite overwhelming evidence and the CDC’s estimate that 1 in 68 children in the U.S. has been identified with Autism Spectrum Disorder (ASD), there remains no clear path to consistent, meaningful support and respite for millions of caregivers.
Barriers to Parent Support
For many parents, the first barrier is simply discovering available programs. For example, Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) is a Medicaid service that provides care both in-home and offsite and is available in every state, yet awareness and access remain significant hurdles.
In Utah, for example, an estimated 200,000 children were eligible for Medicaid coverage annually between 2020 and 2021. However, tens of thousands of these children were never enrolled, leaving their families without cthe ritical resources they desperately need. Once enrolled, the wait for services can be excruciating, as it’s often years before families are granted Medicaid.
As the CEO of Kids on the Move (KOTM), a nonprofit organization based in Utah that provides services to families with children with disabilities and special needs, I work with these families every single day. It is not uncommon for us to see a family sit on the waiting list for sixteen years before they qualify for these vital programs, which would help cover the cost of the care services that parents desperately need.
Meanwhile, daycare centers and the public school system often lack sufficient resources to support these children. Without help from extended family or compassionate neighbors, many caregivers face these challenges entirely alone.
The Right to Parental Respite
Respite care is not a luxury; it’s a lifeline. It gives parents much-needed breaks to rest, recharge, or simply attend to their health and well-being. Unfortunately, these parental support programs are among the few options available. Many of them, like KOTM’s Respite Program, are entirely funded by donations and powered by volunteers. Without ongoing support or donations, these programs cannot continue to operate.
One mother shared her experience of KOTM’s Respite Night: “These are life-changing programs for families. Donations couldn’t go to a better cause. These kids deserve everything. They didn’t ask for this disability. They didn’t ask to be born the way they were born. They didn’t ask for these challenges. Families didn’t ask for these challenges, but it’s something that we have to overcome. People will always say, ‘you’re a saint,’ but I do what I have to do (as a mother of a developmentally delayed child,) and you would do the same.”
For many parents, these breaks are the only time they have to themselves all month. Yet with no grant funding available organizations like KOTM rely solely on community contributions to sustain their work. It’s a reminder that helping these families requires collective action.
It’s a crisis that demands attention and action. Parents of children with special needs don’t just deserve a pat on the back and empty platitudes for their dedication—they deserve tangible, timely support.
Creating Parent Support with Special Needs Respite Care
Not all hope is lost. Yes, the gap in caregiver and parent support is undeniably significant, and the first step to bridging that gap is raising awareness. Now that you’re aware, you can be part of the solution.
- Advocate for Better Policies: Research what caregiver support programs your state offers and advocate for increased funding and accessibility where gaps exist. If the resources aren’t enough, ask for more. Do not be afraid to raise your voice and demand better for the families in your community.
- Offer Personal Support: Look closer to home. Do you know friends or family members who are caregivers? Though the programs may vary widely in availability and scope, every state offers at least some form of caregiver support. It might not seem like much, but tackling the legwork of researching what’s available in your state and then sharing that information can be an incredible form of support to an already exhausted caregiver operating with minimal capacity.
- Rally Behind Local Organizations: Nonprofits like KOTM are working tirelessly to fill the gaps in support. For example, our Respite Program is free to families in our community, powered entirely by donations and the dedication of more than a thousand volunteers every year. Volunteer your time, donate, or spread the word about these programs. Every contribution makes a difference.
The work is happening, but it will take everyone using their voice, talents, and unique contributions to create lasting change and establish meaningful parent support.
To every caregiver: You matter. Not just for the care and love you pour into others but as a person who deserves rest, joy, and a fulfilling life.
Yes, taking care of yourself makes you better equipped to care for your special needs child, but more importantly, you deserve care simply because you matter.
- Start Small: Incorporate manageable habits,like taking a 10-minute walk in the morning, consistent bedtime, or keeping healthy snacks on hand. Small changes can snowball into significant habits.
- Rediscover Joy: Carve out even a little time for your favorite activities—whether it’s reading, gardening, painting, or anything that brings you joy. These moments can help you decompress and keep you from burning out. As a mom, I can attest that it’s easy for the things you love to be pushed to the back burner as more pressing matters take your time and attention. Being a caregiver doesn’t mean losing yourself; you are still a whole person, and those passions and interests are a part of you that deserve attention.
- Build a Support System: Create a strong support network of friends, family, support groups, or therapists and lean on them for compassion, guidance, and encouragement. As Michelle Obama encouraged, “We should make it clear that getting help isn’t a sign of weakness—it’s a sign of strength.” The right support system can be life-changing—lifting you up when you need it most and reminding you that you’re never truly alone in this journey.
Parent support programs and respite care are a lifeline for caregivers of children with special needs, easing their daily challenges and strengthening families. These caregivers quietly carry the weight of extraordinary challenges every day, and it’s time for all of us to step up.
By advocating, volunteering, or lending a hand, we all have a role to play in ensuring these parents get the support they deserve. When we prioritize respite care, we empower families and build a stronger, more compassionate community. Let’s make respite a priority—for them and for us.
