MDA For Strength Independence & Life

In Good Hands

How to find specialized child care for kids with neuromuscular diseases

All parents need time to themselves, but for BJ Mirabile of Winchester, Mass., finding child care for her daughter Katie, who has spinal muscular atrophy (SMA), often proved difficult. “When she was younger, we had some neighborhood sitters and sitters through early intervention,” Mirabile says. But early intervention services are for babies and toddlers with developmental delays or disabilities. Now Katie is older, and she uses a power wheelchair, BiPAP (bilevel positive airflow pressure) machine and MIC-Key gastric feeding tube. “I think people get scared and they say, ‘I don’t know anything about that,’” Mirabile says. 

It is true that a lot of child care providers don’t have experience with children with complex needs. But it is possible to find people who are willing to learn. Finding a child care provider who is a good match for your family just takes a little savvy about where to look — and some patience and ingenuity.

Begin the search

A lot of parents turn to child care websites to search for sitters. According to Sarah Berg, director of marketing at sittercity.com, approximately 3 percent of the sitters on the site note that they have experience with children with complex disabilities, such as muscular dystrophy or spinal cord injury. “Depending on the level of care needed, if a family is willing to provide some hands-on training, that can definitely help them increase their chances of finding the right fit,” she says.

Sometimes it can be easier to find the right person through a more speclialized search. Parents may find helpful information from programs designed for those living with disability, such as their local parent information center or the National Respite Network and Resource Center.

Joseph Ban, co-founder of Denver-based Specialized Sitters, regularly hires child care providers to work with children with complex needs. He recommends reaching out to the therapists or health care providers you already see for your child’s care, as well as the special education department in your school district, to ask if they can recommend potential child care providers. Find out if the paraprofessionals or others at your child’s school are available. “You won’t get the therapist making $150 an hour to watch your child for $15 an hour, but the intern working there might,” he says.

Also, consider contacting universities nearby, as they often have physical therapy programs or special education degrees, and students may be interested in part-time work.

Be hands-on

You know your child best. When working with a new child care provider, be clear about what you need. It can be helpful to write down everything you want them to know — and how to do each task — in a notebook or training manual.

The first time your provider comes to work, it can take a few hours to train them in person. “When I train them, I don’t go out for the first night, so they are comfortable with the equipment,” Mirabile says. “I have them do it solo one or two times when they are with me.”

Be patient, as some people will catch on more quickly than others. “Family members who have seen me care for Katie and nursing students get it,” says Mirabile. “Some concepts are easier to understand if they have experience with a senior parent or a child of their own.”

While this process takes time, it’s worth it to be able to take a break. “When I have found a great personal care assistant, I know that my daughter’s care is in the right hands,” says Mirabile. “I can relax and rejuvenate for when I’m needed to care for her.”

Cheryl Alkon is a freelance writer based in Massachusetts.


Writing the Manual

What should go in your child care provider training manual? Start with these questions. Write down the answers and any other details about your child’s care or routine.

• What medical equipment does your child use and how will the provider operate them? 

• Does a provider need to be able to lift your child in and out of a wheelchair? 

• Do they need to know how and when to turn your child during sleep? 

• Do they need to put on and take off braces? 

• Should they know how to perform CPR on a child with complex medical needs? 

• Does your child need medications, and when should they be administered?

Five Tips for Making Your Child Care Provider Match

1. Use your support network. Consider asking family members or neighbors who already know your child if they can provide child care for a night out.

2. Widen your network. Tap into Facebook or Yahoo groups for parents who have children with the same diagnosis as your child. Ask how others find care and if they can recommend providers they know. 

3. Ask questions. Once you have potential candidates, interview them over the phone and then, if you like what you hear, in person. Find suggested interview questions and other advice here: sittercity.com/parents/find-child-care/find-a-special-needs-caregiver.

4. Check references. Always check a provider’s references and visit the Dru Sjodin National Public Sex Offender Website to see if the candidate has been charged with these types of crimes. Background checks are also important, and some child care websites include that service. 

5. Let your child have a say. Ask your child how he or she feels about a child care provider — both before you hire a new provider and going forward. Some providers haven’t been a good match for BJ Mirabile’s daughter, Katie — such as one who would hover when Katie wanted to lie down without feeling watched. “But those who work well become a part of our family,” says Mirabile. 

MDA Resource Center: We’re Here For You

Our trained specialists are here to provide one-on-one support for every part of your journey. Send a message below or call us at 800-572-1717. If you live outside the U.S., we may be able to connect you to muscular dystrophy groups in your area, but MDA services are only available in the U.S.