Finding a caregiver for a child with special needs: 12 key tips

This guest post on finding a caregiver for a child with special needs is from the dynamic Gary Dietz, a New Hampshire father of a 14-year-old boy with multiple disabilities. Gary is the editor of the new book Dads of Disability: Stories for, by, and about fathers of children who experience disability (and the women who love them). It's an insightful collection of 41 candid essays and poems by men and women. Gary is very generous about sharing his wisdom; we can all learn a lot from his tips about what to do (and what not to do) when you're finding a caregiver for a child with cerebral palsy, autism, Down syndrome or other special needs.

As a father of a child with multiple disabilities, over the years I have hired (and chosen not to hire and poorly hired) more than a dozen in-home helpers, both day and live-in, full-and part-time. I’ve probably interviewed over 75.

Gary, his son and their all-time favorite caregiver, Jason

My experience with caregivers started well before I was a father; back in my late teens. I worked at an overnight camp for children with disabilities for four summers. I was a young caregiver for others’ children and I really needed to learn some hard lessons. Now I am a father who needs to find caregivers who have already learned these lessons. With that, I offer these key suggestions and conversations for the next time you're on the hunt for a caregiver:

1. Cast a wide net

A general good place to start is friends, local colleges and universities (especially teachers colleges), local social service agencies and Care.Com, which has a special needs category. Although Craigslist brings in a lot of really bad candidates, I actually was successful with it on more than one occasion, but I had to spend a huge amount of time sorting through inappropriate applications. Another option is an au pair with special needs training. An au pair visa arrangement allows a non-citizen to come to the U.S. to do childcare work and a cultural exchange.The licensed au pair agencies I worked with had a category on the form for "special needs." A rep I worked with tried to help both based on the database and her knowledge of candidates. This page has a list of licensed au pair agencies in the U.S.

I have had some negative and one positive experience with special needs au pairs, but other folks have had amazing results. Regardless of the source, be prepared to send a lot of generic “No thank you” emails and read a lot of resumes. (Yes, a resume or at least a detailed introduction letter is a must, even if it is from a younger caregiver.) A key point: Be organized and open minded.

2. Do a phone screener

The next step is to come up with a number of questions you can ask candidates by phone. These will vary by your child’s situation, your family situation, hours you’ll need and responsibilities you're seeking. A good idea is to set up a spreadsheet for must-haves, flexible-to-haves and nice-to haves. Check off items for each candidate you screen. These calls can save you a lot of time and frustration. Once, I had an extensive conversation and in-person meeting with someone who sounded great. I was ready to have her meet our son when she brought up the fact that she was not willing to help in the bathroom at all. Well, that was certainly nice to know. I added it to my list of phone screener questions. Next!

3. Now do a face-to-face meeting

It is really important to meet a caregiver face-to-face for an interview. But it is also important not to confuse a child by having them meet every candidate. Of course they should meet the caregivers on your final list before hiring. And if your child has the maturity and intellectual capability, you can talk to them about how many people they want to meet or even be in on the phone screener with. In my case, I tried to set up face-to-face meetings in my home when my son wasn’t around, so I could see the caregiver in our setting without risking a meeting too early. Some parents may feel more comfortable initially meeting with people at local coffee shops or other spots outside of their home.

This meeting is the time to dive deeper on the phone screen questions, ask candidates to tell stories, see how they listen and take note of what kinds of questions they ask you. It’s also a time to observe hygiene, dress and the kinds of things in his or her possession. A woman once showed up at my home wearing high-heeled sandals. Let me clarify: It was 20 degrees Fahrenheit outside, and there was snow and ice on the ground. If she didn’t care about her own safety, how could I expect her to care for my son? The interview was short. Oh, and if a caregiver can’t put their smartphone out of sight during the interview, that’s a red flag right there. A caregiver needs to be present and focused on your child.

4. See how the person communicates with your child

After all this vetting, the big day comes when the candidate and your child meet. A key thing to evaluate is how your child and the caregiver communicate. I always had the caregiver come in and meet my son at his favorite place in the house. If things progressed well, I would ask my son to give the caregiver a “tour” of his room and the house. And I would watch them and listen.

Even if your child’s disability makes it difficult for them to meet the caregiver’s eyes, or he or she is non-verbal, see how the candidate tries to engage with your child. Yes, things can be challenging on a first meeting, but at the same time, you can see if the caregiver knows how to connect with your child. Does the caregiver speak at the right pace for your child? Does he or she ask questions? How does the caregiver react if your child doesn’t answer a question?

I want to have people interacting with my children with maturity and respect. The language used needs to match the child’s capability. You can’t always see this right away, but you can see right away if it isn’t there. For example, if a caregiver talks to your child like a baby when your child isn’t a baby, run away.

5. Make sure their heart is in the right place

A caregiver, regardless of his or her education or background, should have the mindset of putting the child first. Whether you are interviewing someone who is studying to become a speech therapist or a grandmother who has worked with hundreds of typically and atypically developing children over the years, the key is to understand their motivation for wanting the job you're offering. Does their calling match the ethic of your family and its needs? For example, if someone says something to you like they have “a calling to help those less fortunate” or they want to “help your poor child,” will you cringe or will you think that this “noble reason” will help them be a better caregiver? Will an honest answer like “I am a speech therapy masters candidate, and spending these next months with your child will help me with my resume” be someone you think can be a caregiver, a therapist or both? Not that any of these examples should lead directly to a decision. You just need to reflect on their heart and intentions and see if they match what you think would be best for your child and family.

6. Ask “the mall” question

Someone suggested this great question to me and I use it all the time. The scenario I present during interviews: “You and my child are alone in the mall, and a pack of rowdy teens passes. Someone says some really offensive stuff about my child. What would you do?” If the caregiver answers that they would engage the teens and say they were rude or wrong, or try to get into a disability discussion, I would begin to discount this person as a hire. The tenets of a correct answer to this question revolve around the safety and well being of your child, not in community teaching. There is another time and place for that kind of advocacy. The caregiver’s concern is removing your child from the situation as fast as possible. And then, at a level your child can understand, explaining to him or her what happened and help them feel better—just like you would any other child who was exposed to name calling.

Once, I hired a caregiver despite her answering the mall question wrong. But she earned interview points “back” because she deeply engaged me in an extended discussion about advocacy and listened and learned from me about why and when “backing down” to fight the fight another day made more sense in the context of my child’s well being. This opened up a great line of communication between us.

7. Know whether they’re strong enough for the job (literally)

Whether a person is physically able to handle a child can feel weird to broach, but it needs to be asked. I’ve found it’s helpful to approach in a task-specific way like, “Tell me about your training in wheelchair transfers” or “Can you fold and place a 75 pound kid-cart into the trunk?”

8. Explore their special needs experience

Of course you want to hire someone with great experience. As in any other kind of interview, asking open-ended questions gets the candidate telling stories. Try, “Tell me about the most challenging behavior you helped manage in a typically developing child and with a child with special needs.” Also set up a real situation that has happened with your child, then ask them how they would have handled it. If relevant to your child, ask them how they handle being pinched or hit.

Just like hiring folks for other kinds of professional jobs, if they have a non-specific list of the dozens of “experiences” they have had and it seems like an exaggeration, it probably is. A really bad sign I hear once in a while is when a candidate says “Oh, I’ve worked with a lot of kids ‘like’ your kid!” when they don’t really know “your kid” at all yet. Trust your gut. 

9. Get several reference checks

Ideally, you should get at least three references you can call. When you speak with the reference, introduce yourself briefly and generally talk about the kind of disability your child has. If the reference is another special needs parent, you shouldn’t hesitate to ask about the kind of special needs their child has or the care involved. Once, a candidate I was vetting provided amazing written references. After checking, it became clear that she was only used to physical disabilities and relatively physically docile children and she wouldn’t really be a good match for a child with behavioral and intellectual challenges.

If possible, share a story the candidate told you about working with that family, and check to see how closely it matches the parent's recollection of that story. Human nature dictates they will slightly differ, but if they don’t seem at all alike, that should raise a red flag.

If a candidate seems really promising, but doesn’t have specific special needs experience or references (and has been up front about that), ask references for specific examples about patience, focus, responsibility—the things you would ask of any reference for childcare. But also ask the reference’s opinion about the most difficult situations the candidate had with their family. Take notes and think deeply whether those challenges the candidate dealt with are applicable to your family.

10. Show them the money (literally)

The truth is, this profession doesn’t pay well. You need to be sure that the candidate understands their pay and benefits package (or lack thereof). Write out the details of their package. What will they be paid? When and under what conditions will there be a bonus? What kind of time-off and sick policy is there? I made the mistake of thinking that a caregiver of the level that could work with my son was used to these kinds of agreements. But often, they were not. So, don’t hesitate to write everything down and have them reflect on it even before an offer. There is nothing worse than your child building a relationship with a caregiver and then, after a few months, having them say “I thought I could live on this salary but I really can’t.”

11. Don’t rule out men

My ex-wife, much like many women and men, was completely adamant that we not hire a male caregiver. I am pretty sure it was for the generally debunked myth that men who want to be caregivers are likely to be child molesters. However, I had a kick-ass resume from Jason, and got a really good vibe from him on the phone. So I encouraged my ex to chat with him. Jason was kind, liked to read to kids, was very soft spoken and extremely (to the point of my frustration sometimes) analytical about what he should do in a particular situation. He was fun and energetic and ended up being a real friend to my son. We hired Jason, and he was, we agreed, hands down, the best caregiver we ever hired.

12. Don’t let exhaustion and frustration force your hand

Sometimes, as parents, we are so tired and frustrated that we unintentionally try to squeeze a candidate into a role that isn’t for them. If your gut is telling you something’s not quite right, do not settle. Think of it this way: If things don’t work out, it’s going to be a terrific pain having to go through the process all over again.

To purchase Gary's book at a 15 percent discount for Love That Max readers (thanks, Gary!), head on over to this page. Follow the Dads of Disability project on Facebook here.