Finding a rock star caregiver is a challenge for any parent. But for those who have children with disabilities or special needs, it’s often much harder to find quality help. When your child is younger, you can send them to public school, under the Individuals with Disabilities Education Act (IDEA), but you might struggle to manage their care outside of school hours. Plus, once they become adults, if they are severely disabled, you might have to find a full-time care solution. Finding great care can give special needs parents much-needed respite, but quality special needs child care is often hard to find, costly and can take a financial toll on families.
“Over the years, we have had many challenges finding care for our son,” says Marilyn Lawrence, a mom in Castro Valley, California, whose 27-year-old son, Kyle, has cerebral palsy and epilepsy.
Not only was it “challenging to find someone who would see Kyle for the person he is, and not his disability,” says Lawrence, but his need for toileting assistance makes it difficult to find caregivers willing to help, even though he requires little overall assistance.
Finding caregivers has been a struggle throughout Trudy Grable’s daughter’s life, too. Grable, parent to an adult daughter with an intellectual disability and autism spectrum disorder, is the Person Centered Programs manager at Parents Helping Parents in San Jose, California.
“Largely, it’s because people have a fear of doing something wrong, or if there are medical complications, that the person will die on their watch,” Grable says. “You even get family members who are not willing, so your natural supports just fall away.”
“[Finding affordable care] is very difficult,” says Dr. Patricia DeForest, D.O., pediatric palliative physician and assistant professor at the University of Texas Health Science Center at San Antonio. “And part of it is because someone who has the skills we want and desperately need, they should be making more for those skills, but parents aren’t able to pay.”
Throughout her career, DeForest has observed countless parents struggle to find affordable and quality care for their children with special needs. Additionally, needs can vary greatly from child to child, depending on their condition.
Here’s a closer look into the types of special needs care available and how to determine the right one for your child.
What type of care does your child need?
Each child with special needs has different care requirements, which typically depend on the severity of their disabilities, DeForest says. Before you look for care, think about your child’s typical day (and/or night) and consider these questions:
What specific type of care does your child require? The types of special needs can be physical, developmental, behavioral/emotional or sensory-impaired, and different caregivers might specialize in different areas. For example, DeForest says, a child with severe ADHD might need a caregiver who can be fully attentive and able to handle any impulsivity or emotional control issues, while a child whose issues are physical, she says, may require a caregiver to do more hands-on work, such as lifting or moving the child, turning them in bed and potentially diapering them.
Does your child need assistance with meals? Perhaps your child has a special diet or needs an adaptive chair or special utensils. Think about what type of help your child requires for a typical meal.
Does your child require regular medication or treatments? An experienced nanny can often be trained to handle simple medication needs. However, for a child with severe disabilities or major medical issues, DeForest says, an in-home nurse may be required.
Does your child need socialization? If your child needs or enjoys socialization with other children, a day care option might be best outside school hours rather than in-home care, DeForest says. But if you’re more comfortable having them at home, individualized in-home care could be a better fit.
How much attention does your child need? If your child needs to be fully supervised at all times, you might need an in-home caregiver who is fully devoted to your child. At a day care facility, the caregivers have to watch multiple children at once, so that might only be an option if your child is able to function well without as much individualized attention.
How much can you afford? The more specialized and experienced level of care you want, the more you’ll pay. For example, a traditional nanny will cost a lot less than a skilled nurse from a home health agency. Keep in mind that in some areas, you can access government funding to reduce your out-of-pocket costs. Start by contacting your state’s agency that oversees disabilities to find out if there are any programs available to you. You can also contact your state’s education board or local school board to learn more about school-based options. If you’re struggling to find information, contact the nonprofit PACER, which can help connect you with resources in your area.
What types of special needs care is available?
Quality care is out there, even if it might take a bit of time and effort to find it. There are several types of care available, depending on your child’s needs:
If you’re looking for in-home care, you could hire a traditional nanny or babysitter if you think you’ll be able to properly train them to take care of your child. That could mean spending a few days or weeks having them shadow you and ensuring they seem capable of any special needs, such as diapering/toileting, feeding, turning/moving or administering medications. You may also want to ask that they get trained in CPR. According to a 2019 Care.com survey, the national average cost of a nanny is $596 per week for one child.
Leigh Monichon, a mom in San Jose, California, who has a child who is severely disabled with autism and a rare form of Williams Syndrome, says she found her son’s current caregiver, a former Marine, via a recommendation from a special needs day care center. This caregiver only had prior experience caring for seniors, but Monichon took a chance on him and says it has turned out to be a fantastic fit. Finding the right caregiver can be a process of trial and error, she says. And since a nonprofit funded by the California government funds most of his pay, Monichon is only responsible for paying a minimum amount within her budget.
Find a caregiver on your own or through referrals, or you can use a caregiver marketplace (like Care.com) or a nanny agency that can place you with a nanny who’s been vetted. But be aware that agencies often charge placement fees that can range in the thousands. (Some just charge an up-front fee, but others have ongoing fees.)
Special needs caregiver
You can also use a caregiver marketplace or agency to find an independent special needs nanny or caregiver who specializes in working with kids with disabilities. This could be someone who has worked formally in special needs education or someone who simply has previous experience nannying or caregiving for kids or others with special needs. On Care.com, the current average rate for an active, full-time nanny with special needs experience is $18.46 per hour.
Another option is in-home care, which you can find through a home health care agency. This is a great option for children who have complex medical needs or need a lot of assistance with personal hygiene because home health aides typically have more experience and training in these areas than a traditional caregiver. The average hourly cost of a home health aide is $19 per hour.
With a home health agency, you can let them know your child’s unique needs, and they can match you with a caregiver who is qualified to help. Some children might need full-on skilled nursing, while others might just need help with toileting and bathing. Some home care services can also provide therapies, such as autism therapy, physical therapy or speech therapy.
If you want to give your child time to get out of the house and socialize in their free time, or if they’ve aged out of school, another option is a traditional day care center. Private child care centers are legally required to accommodate children with special needs.
According to Care.com’s 2019 survey, the national average cost of a week of day care is $213. If your child with special needs is older, there are also adult day programs specifically for special needs, which costs $61 per day on average, according to our research.
In the past, when hiring in-home caregivers, Monichon says she struggled to find reliable people who showed up on time to work, which made her late to her job. She took her son to an adult day care, and she appreciated that she was in control of the timing. However, there are potential cons: Monichon says because the pay in adult day programs tends to be low, there’s often a lack of formal training, there’s frequent caregiver turnover and programs are sometimes understaffed, which means the kids don’t usually get one-on-one supervision.
But DeForest says if parents aren’t as comfortable with someone coming to the home, or they want socialization for their child, a special needs day care facility can be a good fit. Parents just have to be vigilant.
“They need to do impromptu drop-ins to see how things look, how kids are acting and what the activity level looks like,” DeForest says. “They should do it several times before they take their child.”
Keep in mind, too, that you can also use a mix of in-home and day care services, if needed.
What to look for in a special needs caregiver
When you begin searching for candidates, Grable highly suggests creating a detailed job description so they understand the full extent of their duties. Then, as you interview, paint a true picture of what the time with that child will be like, suggests DeForest.
Here’s what to look for in the hiring process.
Interest in the child
All the parents we interviewed say it’s crucial for a potential caregiver to show interest in the child and ask questions.
“Have your child there with you,” says Sherrean Carr, a dean of a community college in Gilroy, California, whose daughter has cognitive and physical disabilities, in addition to a severe seizure disorder. “Are they looking at the child? Talking to the child? I usually like to have my daughter in the room while I’m interviewing. If they show interest in her, that shows me a lot. If they’re not looking at her and just asking me questions, they don’t seem interested.”
Lawrence adds that it makes her crazy when potential caregivers ask what her son likes to do or eat right in front of him.
“Look for a person who immediately talks to your child and not to you about your child,” she says.
DeForest recommends that parents explicitly ask the caregiver why they’re interested in caring for their child. Monichon likes to ask this same question to find out their motivation beyond money; she’s found that some people view it as a calling. She also likes to ask their philosophy on discipline.
Comfort with job duties
It’s important to find out if the person will be able to tolerate the ins and outs of the job. Carr likes to ask potential candidates if they’re truly comfortable changing diapers, feeding her daughter and working with someone who is nonverbal. Bonville and Lawrence have both struggled to find people willing to assist their sons with diapers and toileting.
“Look for a person who doesn’t seem fazed by things that you may ask them to do,” Lawrence says.
Willingness to learn over experience
DeForest suggests parents ask prospective caregivers if they have any experience working with children with special needs. If they don’t, the next best thing is someone who is highly trainable, meaning they’re willing to learn and a quick study, she says. Several of the parents we spoke to have also found that prior experience isn’t necessary as long as caregivers are willing to learn and be open-minded to what the job entails.
When you’re looking for the right special needs caregiver, remember that you are your child’s biggest advocate, especially if the child is nonverbal, Lawrence says.
“You know your child better than anyone,” she says. “Always trust your gut on people and places.”