Taking care of a child on the autism spectrum is a rewarding but demanding job. It's perfectly normal to need a break sometimes – a chance to recharge and ensure you can be the best caregiver possible. That's where respite care comes in -- click here to see how we spent our first respite care session.
Respite care provides temporary relief for families caring for loved ones with disabilities. It allows you some time for self-care, errands, or even a relaxing night out. Our family utilizes respite care for our daughter JJ, who is on the autism spectrum.
BACKGROUND
For reference, we live in Placer County, CA (click here to learn more about us). We receive respite service through the Alta California Regional Center, which covers the cost of allocated hours for respite -- meaning, Alta assessed our daughter and then said they would cover so many hours per quarter. In our case, we're approved for 90 hours of covered respite care per quarter. Our daughter is considered "level 3" with a severe speech delay, in case that helps you gauge how many hours of care your child might receive.
HOW TO GET RESPITE CARE
Below are 4 relatively simple steps to getting respite care in California. If you're not in California, click here.
You first need an IPP - Here we go on the acronym journey! IPP stands for Individual Program Plan. It is essentially an assessment and goals tracker that the regional center creates for your child and family. In my opinion, the goal of an IPP is to serve as the framework to getting you services that will ensure your child can thrive in their own home. As with all regional center services in California, respite is authorized through the Individual Program Plan (IPP) process. So, if you were on the fence about utilizing your regional center for services because you have private insurance-covered services, this might convince you to sign up! If you don't have an IPP, click here to find your regional center in California and connect with them to set up an IPP appointment.
Assessment and Allocation: After we had our IPP, Alta assessed our daughter's needs and allocated a specific number of respite hours per quarter -- in our case, 90 hours per quarter. This means Alta will pay for up to 90 hours per quarter for a trained respite care provider to watch our daughter, allowing us to take a break.
Agency Matching: Once we knew how many hours we were allocated, Alta then paired us with a respite care agency. We completed the intake paperwork and interview, but unfortunately, we went four months without getting paired with a provider within the agency. I have to assume that they have a worker shortage (like so many industries do!). Advocating for Change: I felt four months was long enough to wait for our initial agency to contact us with someone, so in January of 2024 I contacted our Alta case worker and requested a referral to a different agency. Thankfully, they were happy to help!
Finding the Perfect Fit: Alta connected us with a second agency, Pacific Homecare Services. Within two months, we had completed intake, orientation, and had "matched" with a wonderful caregiver! The caregiver came to our house for a meet and greet, hung out with JJ, got a little tour of our house, and a run-down of JJ's typical schedule and needs. We asked the care provider about her background, experience, etc. We absolutely LOVE our caregiver; she's an Earth angel, for real. After the meet and greet, we told the agency we loved her, she said she liked us, and BOOM we were matched and set up a regular schedule for covered respite care. Right now, we receive care once a week for three hours. It may seem short, but it is HUGE to have time to recharge (and have some date time)! If we wanted more hours than Alta qualified us for, we could pay out of pocket for more. Also, if our son, JJ's brother, was three years or older, we could look into paying our respite caregiver to also watch him. We haven't done either of those options (we're not even close to maxing out our Alta-approved allocation), but I thought I'd share in case that's useful information!
I hope that by sharing our experience, you get yourself some respite care! Our experience highlights the importance of advocating for your needs. If the initial agency placement isn't a good fit, or you're waiting for a long time, don't hesitate to ask for a referral to another one.
If you're not in California, here are some resources to help you find respite care for your child:
Federal Developmental Disability Services: Every state has its own version of a "regional center" (that's what we call them in California) that offers support and services for individuals with developmental disabilities. Here's a handy map to help you find services in your state. Note: not all state programs cover respite: https://www.nasddds.org/state-agencies/
National Respite Network: This organization provides a wealth of information on respite care, including different models and how to find providers throughout the nation: https://archrespite.org/.
Private Insurance and Respite Care: If you don't have access to regional center services, you may be able to get respite care coverage through your private insurance plan. However, coverage varies widely. Contact your insurance provider to understand your specific plan details and what type of respite care might be covered.
Remember, you're not alone! Respite care is a valuable resource for families caring for children on the autism spectrum; you're not a bad parent for needing a break. If you're like me, you'll be amazed what a short, guilt-free break will do for your family and your mental health! Don't be afraid to ask for help and advocate for the support your family needs.
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