Respite Care for Children with Autism

The reality is, most of our kids need to be engaged most of their waking hours. Respite care for children is needed to give parents a break regardless of the length of time they have been on the autism journey.

In this blog I’ll be discussing what respite care is, why it is important for caregivers, and how you might begin to find respite providers where you live. Did you know that autism moms have stress levels comparable to that of combat soldiers? Being a caregiver to a child or an adult with autism can be both rewarding and exhausting and it’s super important to talk about respite care.

When both of my boys were young, we had au pairs living with us for many years. These amazing workers gave me a chance to work, to write my book, to start my online courses, and to travel the world speaking about autism.

Having an au pair also provided me with much needed respite and help caring for both of my boys. Especially Lucas who has moderate to severe autism. Without having au pairs live with us and helping us, I would have been stretched very thin and I wouldn’t have been able to do all I’ve done as a behavior analyst or as a mom.

What is Respite Care?

I know people from all over the world watch my video blogs. In fact, in my online courses and communities, which I started in 2015, I’ve had parents and professionals from over 80 countries. I am so grateful for this. But I’m also very aware that respite care provision in a city in Idaho is different from respite care in Pennsylvania and different from respite care in Austria.

Respite care is basically someone who can provide care and supervision – and in some cases behavioral intervention – knowing how to engage your child. It’s a provision of care from one hour to overnight respite so that you, the parent, can get a break.

As I mentioned earlier, there was a study done that showed stress levels of moms of kids with autism is comparable to the stress levels of soldiers. They’re very much in a fight or flight mode way too much and it takes a toll. It’s important to learn how to deal with stress, and this includes having respite care for children. Finding respite provision with people that you would trust to leave your child with is extremely important and in many cases difficult.

Your child needs to be with people who are ready to engage him or her. A child that is not engaged for a lot of their waking hours will tend to have safety issues and other problem behaviors. They happen because it’s just impossible to keep kids engaged for many hours in a day.

Who Pays for Respite Care?

Let’s talk about funding issues. When we had au pairs, we privately paid for them to come and live with us in our home. Not all families can afford that. We’ve also paid for private babysitters and other helpers. But over the years we’ve also gotten funding, and now Lucas has a waiver that provides a lot of the respite provision and the care that he needs. But in every county, in every state, in every situation, how you get respite care is totally different.

There are huge waiting lists for autism care. I know how hard it is in my county and state. I can’t imagine it’s easy to get respite care in other places either. If you are looking for funding for respite – if you have a case manager or if you have a governmental agency providing some therapy – check with that caseworker, check with your doctor. See how you can get respite care. Be really vocal because if you need funding for respite you need to advocate for it.

Where to Find a Respite Provider

Whether you are looking to privately pay respite or you’re looking for funding for respite, look for providers at Care.com first. I would really screen the providers not only for the distance from your house but also their backgrounds with special needs kids. Check references heavily. Care.com would have the ability to find full time and part-time nannies and babysitters.

I’ve even recruited therapists from Care.com. Though it’s not set up for recruiting therapists. It’s more set up for recruiting nannies and babysitters. But I’ve found some really good people through the site.

You might be thinking, “Oh, I don’t really trust that, it’s online.” But one of the first respite providers I found on Care.com was a woman named Amy. She was in school to become an occupational therapist. She volunteered with special needs basketball. I checked her references and she was first aid, CPR trained. I mean she was a gem and I found many, many people on Care.com with similar backgrounds.

In addition to finding people online at Care.com, you can also check with high schools or colleges in your area. A lot of times anybody who is in college or in high school with aspirations to become a special ed teacher, for instance, would make a very good babysitter. You could train them to engage your child and deal with any problem behaviors. You could also check with your church for volunteers and also your local community autism organizations or your caseworker.

Want to learn more about respite care?
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Safely Finding a Respite Provider 

Wherever you recruit from, do a phone interview first. Look at the information you can find online. On the phone interview, describe your child to them and check references. Then arrange for them to come meet your child and you. If you want to be extra careful, it’s also a good idea to check their driver’s license. Make sure they are who they say they are. It is risky to always have strangers in your home. So be careful, be smart and use as many safety precautions as possible.

Also, autism professionals, like registered behavior technicians, could become respite providers. I recruited a lot of Lucas’s current and past workers from my clients; the therapists that were working with my clients during the day. I would see if they wanted to work with Lucas in the evenings or on the weekends. These were just all independent contractors so it didn’t take away from my client’s time. Your behavior analyst, if you have one on the team, might be able to recommend some people.

Training a Respite Provider

You’re also going to need to train them. You can’t expect Susie Q who’s an occupational therapy major to come in and know how to help your child. In the beginning it might seem like a lot of work. You’re looking for respite care, but now you have to sit with your child and new therapist to teach them what to do. But the more intervention and training you can give to this new therapist, the more long term respite you’re going to actually have.

In summary, whether you’re a new autism parent or you’ve been at this for a while, getting a break by using respite workers is very important. Autism parents have stress levels that are really high. We want to maintain our ability to be the best parent, partner, employee as possible. We need to take some time for ourselves. Providers can help find candidates and offer basic training to those respite workers as much as possible. 

For more information about how to assess and teach your child to reach their fullest potential – and to be as safe, as happy and as independent as possible – take my autism quiz at marybarbera.com/quiz. It’ll only take you two minutes. It’s for both parents and professionals. The quiz will help you get on the right path to reducing your stress levels and improving the quality of life for your child or clients.

Want to learn more about respite care?
Take My 2-Minute Quiz

Transcript

The reality is most of our kids need to be engaged most of their waking hours and so respite care is very important to give parents a break regardless of the length of time they have been on the autism journey. In this blog I’ll be discussing what respite care is, why it is important for caregivers and how you might begin to find respite providers where you live. Hi, I’m Dr. Mary Barbera, autism mom, Board Certified Behavior Analyst, and bestselling author. Each week I provide you with some of my ideas about turning autism or signs of autism around, so if you haven’t subscribed to my YouTube channel you can do that now.  Did you know that autism moms have stress levels comparable to that of combat soldiers? Being a caregiver to a child or an adult with autism can be both rewarding and exhausting and it’s super important to talk about respite care.

When both of my boys were young, we had au pairs living with us for many years. These amazing workers gave me a chance to work, to write my book, to start my online courses, to travel the words, world, speaking on autism. And having an au pair also provided me with much needed respite and help caring for both of my boys, especially Lucas who has moderate to severe autism. Without having au pairs live with us and helping us, I would have been stretched very thin and I would have been unable to do all I’ve done as a behavior analyst and to be the best mom I could. So I know people from all over the world watch these video blogs. In fact, in my online courses and communities, which I started in 2015, I’ve had parents and professionals from over 80 countries. So I’m super grateful.

And I also am very aware that respite care provision in a state, a city in Idaho is different than respite care in Pennsylvania and different from respite care in Austria. So respite care is basically someone who can provide care and supervision and in some cases, behavioral intervention and knowing how to engage your child. So respite care is that provision of care from one hour to overnight respite so that you, the parent can get a break. As I said in the opening that there was a study done, now it’s been over a decade, but it showed stress levels of moms, of kids with autism to be that of combat soldiers. They’re very much in a fight or flight mode way too much and it takes a toll. So finding uh, not only finding respite provision but also finding quality people that you would trust to leave your child with is extremely important and in many cases difficult.

The child being with people who are ready to engage him or her is, is important. And because a child that is not engaged for a lot of their waking hours will tend to have safety issues or have extensive self stimulatory behavior. I know I’ve done a video blog on self stimming and scripting that you may want to check out, but that basically happens because it’s just impossible to keep kids engaged for many hours in a day. I also did an interview with another behavior analyst, Dr. Becca Tagg, who talked all about burnout and gave some tips on avoiding burnout. So you may want to check that out as well. So how do you find a respite worker? There, before we get into that, there’s also funding issues. So in, you know, when we had au pairs, that was, we privately paid for au pairs to come and live with us for a year or more in our home.

So not all families can afford that. We’ve also paid for private babysitters and, and etcetera. But over the years we’ve also gotten funding and now Lucas has a waiver that provides a lot of the respite provision and the care that he needs. But in every county, in every state, in every situation, it’s totally different how you get it, what the waiting lists are. There’s huge waiting lists. And I know in my county and my state, so I can’t imagine you know, it’s easy to get respite, but if you are looking for funding for respite, then if you have a case manager or if you have a governmental agency providing some therapy, check with that caseworker, check with your doctor. See how, how can I get respite? Really need to be vocal in many cases because if you need funding for respite you’re just going to have to be vocal and start, start advocating for that respite.

So whether you are looking for private pay respite or you’re looking for funding respite, some of the tips, if I were right today looking for someone to care for Lucas, no matter who’s paying, I would look for providers at care.com and I would really screen them not only for distance but their backgrounds with special needs kids. I would also check references heavily. Care.com would have the ability to find full time, part time nannies, babysitters. I’ve even recruited therapists from care.com, even though you’re, you know, they’re, you’re not, it’s not set up for recruiting therapists. It’s more set up for recruiting nannies and babysitters. But I’ve found some really good people and people are like, oh, I don’t really trust that, that’s online. But like one of the first respite providers I found on care.com was a woman named Amy and she was in school to become an occupational therapist.

She volunteered with special needs basketball. And so I checked her references. She was first aid, CPR trained. I mean she was a gem and I found many, many people on care.com with similar backgrounds. So be smart about it. Check references, check profiles. But you can find good people online.  If you, in addition to finding people online at care.com you can also check with your church or high schools or colleges in your area. A lot of times special ed majors, the occupational therapy majors, elementary ed majors, anybody who is in college or in high school with those kind of aspirations to become a special ed teacher for instance, would make a very good babysitter that you could train to engage your child, deal with any problem behaviors and so forth. You could also, like I said, check your church, maybe they have volunteers or ideas and also your local community autism organizations or your caseworker.

I, wherever I’ve recruited from, I would do a phone interview first after I looked at their, their, you know, information that I could find online, if that was the case, I would do a phone interview first, describe your child, check references and then arrange for them to come meet your child and you. So I would, I would do that. And if you are recruiting online and you want to be extra careful, it’s also a good idea when they show up to check their driver’s license and make sure they are who they say they are. It is risky always to have strangers in your home. So be careful, be smart and use as much safety precautions as possible. Also, autism professionals, like registered behavior technicians could become respite providers. I recruited a lot of Lucas’ current and past workers from my clients.

They were, you know, therapists were working with them during the day. So I would see if they wanted to work with Lucas in the evenings or on the weekends. And these were just all independent contractors so it didn’t take away from my client’s time. And your behavior analyst, if you have one on the team, might be able to recommend some people. You’re, you’re also gonna need to train them. So you can expect Susie Q who’s an occupational therapy major to come in and know how to help your child. So in the beginning it might seem like a lot of work. Like, I just want respite. Why do I have to sit here and, and be with my child and this new therapist. But the more intervention and training you can give to this new therapist, the more long-term respite you’re going to actually have.

So in summary, whether you’re a new autism parent or you’ve been at this for a while, getting a break by using respite workers is very important. Autism parents have stress levels that are really high and we want to maintain our ability to be the best parent, partner, employee, etcetera. We need to take some time for us and providers can help by helping parents find candidates and offer basic training to those respite workers as much as possible. So for more information about more steps you can take, how to assess and teach your child to reach their fullest potential and to be as safe, as happy and as independent as possible, you can start by taking my autism quiz at marybarbera.com/quiz. It’ll only take you two minutes. It’s for parents and professionals and we’ll help you get on the right path to reducing your stress levels and improving the quality of life for your child or clients. If you liked the video blog, I would love it, give me a thumbs up, leave me a comment, share it with others who might benefit and I’ll see you right here next week.

 

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