Stop Surviving. Start Scheduling Support.
You’re in the bathroom. Door locked. It’s the only quiet you’ve had all day.
You’re not hiding.
You’re surviving.
And somewhere between the IEP meetings, medication schedules, work deadlines, marriage maintenance, sibling needs, and the 24/7 mental load of caregiving… you realize something:
You need a break.
Not because you’re weak.
Not because you don’t love your child.
But because you’re human.
Let’s talk about respite care — the thing we all desperately need and rarely know how to actually get.
It is a break from caregiving for a loved one. Respite care typically involves bringing in care providers that can provide medical or companion care to the individual requiring care, so the caregiver can spend time independently of their loved one. Source: Colorado Respite Coalition https://coloradorespitecoalition.org
What Respite Really Is (And Why It’s Not Selfish)
Respite care is temporary relief for family caregivers caring for someone with special needs. That’s the textbook definition.
Here’s the real definition:
Respite is oxygen.
It might look like:
A caregiver coming into your home so you can go to work.
A few scheduled hours each week so you can function like a normal adult.
Overnight support so you can sleep without one ear open.
Drop-off programs or summer camps.
Community outings that build independence and belonging.
For some families, respite means a quiet cup of coffee.
For others, it means a weekend hike with your spouse.
For many of us, it means uninterrupted sleep — and that is priceless.
Back-to-school season? Brutal. The shift from summer flexibility to academic demands can hit hard — especially for our disabled teens and young adults. That’s exactly when I go back to my waiver plan, adjust units, and schedule community connector shifts and overnight support.
Because resets matter.
You matter.
Why Finding Care Feels So Damn Hard
Here’s the truth: finding reliable caregivers can feel like a full-time job layered on top of your already impossible life.
Traditional platforms take time. Energy. Endless scrolling. Messaging. Interviewing. Vetting.
And if you’re exhausted?
You don’t have extra time.
You don’t have extra energy.
That’s exactly why Disability Care Colorado exists.
👉 https://www.disabilitycarecolorado.com/
This isn’t a national free-for-all.
This is Colorado families connecting with Colorado providers.
It was built because Medicaid PASA agencies simply don’t have enough respite workers to meet demand. Families are left scrambling. Providers are looking for work. And somehow they’re not connecting fast enough.
With one annual subscription, families can:
Access a pool of experienced direct service providers
See profiles detailing experience, location, and agency affiliations
Use their Medicaid PASA agency for funding
Or choose to private-pay directly
It doesn’t vet providers — that responsibility stays where it belongs: with you. You interview. You check references. You decide.
But the time saved just getting connected? Game changer.
For Providers: This Is Freedom
Disability Care Colorado also empowers respite workers to:
Showcase their skills
Choose how much they want to work
Connect directly with families seeking support
It’s about strengthening our statewide disability community — not gatekeeping it.
How to Actually Fund Respite (Because Yes, It Costs Money)
Let’s get strategic.
The BEST long-term funding source for respite is a Colorado Medicaid Waiver.
If you don’t have one, you are potentially leaving up to $100,000 per year in services and funding on the table — including respite.
If you already have a waiver? Make sure you are maximizing it.
Respite may also be funded through:
Family Support Services Program (FSSP)
Colorado Respite Coalition grants
Summer camps and group respite programs
Community-based drop-off programs
Ask your case manager. Ask other parents. Ask in community groups. We build power by sharing information.
Let’s Be Honest
Caregivers burn out in silence.
We power through.
We muscle up.
We tell ourselves, “It’s fine.”
But chronic exhaustion isn’t noble.
It’s dangerous.
Your nervous system needs relief.
Your marriage needs breathing room.
Your other children deserve a version of you that isn’t depleted.
You deserve to feel like yourself again.
Respite isn’t quitting.
It’s sustaining.
If You’re Nodding Right Now…
Start here:
Get on a Medicaid waiver (or optimize the one you have).
Visit Disability Care Colorado and get connected faster.
Build a support system that doesn’t require you to white-knuckle survival.
Because this life?
It’s a marathon.
And no one wins a marathon by refusing water.
Here’s Some Additional Support Just For You!
Summertime for school-aged children often means summer programs and sleep-away camps. There are also some amazing year round group setting, drop off care events like All-Stars Club www.allstarsclub.org or the Easterseals Discovery Club: https://www.easterseals.com/co/programs-and-services/play/discovery-club/
Nightlights has four metro Denver and one Colorado Springs location: https://nightlightskids.org/locations/
And in Colorado Springs, The Resource Exchange offers: https://www.tre.org/services/break-time/
Ask around your community and at your case management agency about these!