Under the American Disabilities Act, typical daycares must try to accommodate children with special needs, but it often doesn’t happen. “Many families with children who have special needs find appropriate and adequate child care, difficult, if not impossible to find,” says Dr. Hailey Nelson, complex care pediatrician at Valley Children’s Healthcare in Madera, California.
There are multiple care options for children with different abilities, from specialized daycare to in-home care, and it’s free for many children through government programs. Though navigating the system and finding care isn’t easy.
Below, experts and parents share advice on understanding types of special needs child care and how to find the ideal one for your family.
What is special needs child care?
There isn’t just one type of special needs child care given that individuals have a range of disabilities, medical conditions and preferences. “Children with special needs often have differentiated needs that require a high level of support,” says Jill Hartrich, a child therapist and parent coach in New York City, who works with special needs families.
Some government programs, like Medicaid waivers, provide free special needs child care and therapies based on disability rather than income. However, specific diagnoses are required, wait lists can be years long, rules vary by state and parents must be very proactive, says Jodi Klaristenfeld, founder of FLRRiSH, the premier resource for preemie parents, and a New Yorker whose daughter has special needs from being born 12 weeks premature.
Special needs child care comes in many forms since some kids have greater needs than others. “The cost to provide care to a child with complex medical needs is significantly higher than that of a child without complex needs,” Nelson says. “Specialized, trained individuals, access to adaptive seating, feeding or therapeutic equipment is costly. For those with a high level of needs, the options for child care are slim.” Those with fewer needs may have more options. Read on for some of the most common options.
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In-home special needs child care
Some parents prefer in-home care, though it’s different from hiring a regular nanny. “When looking for a caregiver for a special needs child, you are looking for all the qualities you need in a wonderful nanny of a neurotypical child, as well as the important qualifications for that unique child,” says Anna Webber, a former special education teacher who co-founded and co-owns Thrive Nannies, a special needs nanny agency, in the Austin area.
“This might mean that the family needs a caregiver with special qualifications such as a Registered Behavior Technician, Occupational Therapy Assistant, or Certified Nurse Assistant,” Webber says, but they need to be comfortable in a home setting.
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Why choose in-home special needs child care?
In-home special needs childcare is ideal for some children, like those whose behavioral challenges require one-on-one supervision, who struggle in some sensory environments or who are too medically fragile for daycare germs, says Nelson.
Nelson says some children require caregivers trained in medical needs like tube feedings, catheterizations, ostomy bag changes and ventilator settings. “A standard daycare or babysitter cannot provide access to these paramedical services,” she says.
Just know that the greater the required skills or training, Webber says, the higher the cost. “Special needs nannies can provide the most personalized care to help your child really thrive; however they are the most expensive option and outside of many family’s budgets,” she says. Webber notes that in the Austin area, rates start around $25 per hour, though it can increase with experience and training, number of children and intensity of needs and responsibilities.
Sarah Blunkoksy, a mom of three and a coach and yoga therapist in Richmond, Virginia, says in-home care worked best for her daughter Josie. Now 18, Josie has Down syndrome and autism. As an infant, Josie was medically fragile enough that “the option of daycare was off the table,” Blunkoksy remembers.
After receiving bad advice that they weren’t eligible for aid, Blunkoksy left the workforce to care for Josie. When Josie was 4, a friend alerted them to their eligibility for a Medicaid waiver in Virginia.
Josie enrolled and attended free inclusive preschool, but Blunkoksy soon pulled her out after frequent illness and communication regression. She switched to in-home care, using Medicaid’s consumer-directed option that let her choose and manage her caregivers. Blunkosky complements that care by homeschooling Josie and her siblings.
Blukoksy says her daughter has thrived with this personalized care, and it was a game-changer when Virginia started allowing in-home care attendants to tag along anywhere the child went. After having two more kids, Blunkoksy couldn’t juggle all three in public. With a Medicaid-covered caregiver, they could venture out together, like to library storytime, with the caregiver watching Josie and ensuring she didn’t run off. “I could still bring Josie into the world and to these activities and we could still keep her safe,” Blunkoksy reflects.
Finding in-home special needs child care
One method is using an agency, like Webber’s, or finding someone yourself through recommendations or websites. Either way, Blunkoksy says, the challenge is finding someone you feel comfortable bringing into the intimacy of your home and working with your loved one.
Whenever she posted her position online, she was flooded with responses, many unqualified. Additionally, she found it hard to attract and retain caregivers since Virginia’s Medicaid waiver limits pay and doesn’t provide health insurance or worker’s compensation.
Blunkoksy found success by proactively sending the job information to ideal candidates. Since Josie doesn’t require skilled nursing, Blunkoksy found a sweet spot with college students who can accept lower pay and benefits in exchange for work experience and references. “I shape it like a great experience and stepping stone, especially if someone wants to be a special ed teacher or occupational therapist,” Blunkosky says.
As you screen candidates, “It is important for the parent to understand their child’s unique needs and think about what qualifications the caregiver will need to make sure the child is successful,” Webber says.
Specialized child care centers
For children with greater needs, another option is specialized centers, which have more training, accessibility and in-house services than traditional or inclusive child care centers. But they come at a higher price tag.
“Specialized child care settings often require a higher student-to-adult ratio, which could be more costly to the center,” Hartrich says. “They usually need specialized equipment, and settings may need to be ADA-accessible with specialized providers on staff.”
Some centers specialize in certain conditions, like autism, while others are more general. Nelson points to Loretta’s Little Miracles in Fresno, California, a group daycare for medically fragile children, with trained nurses and medical professionals in-house.
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Choosing a specialized center
If you’re considering a specialized center, Klaristenfeld says, find out what kinds of children attend and what their needs are. “Will your child have a role model or someone who has similar challenges that your child does?” Klaristenfeld suggests asking. “That’s important, because you want to know what help those schools are providing and if it’s going to cater to your child’s specific needs.”
Beyond meeting accessibility and medical needs, it’s key to look at teacher training, if therapies are integrated in the classroom and they create individual learning plans.
“Will your child have a role model or someone who has similar challenges that your child does? That’s important, because you want to know what help those schools are providing and if it’s going to cater to your child’s specific needs.”
— Jodi Klaristenfeld, a mom of one and founder of FLRRiSH, the premier resource for preemie parents
Inclusive child care programs
A blended model called inclusive care features a mix of kids with delays or special needs and those without.
Klaristenfeld’s 5-year-old attends an inclusive preschool in New York City, where she receives state-funded services inside her school day. She notes inclusive programs tend to have smaller class sizes, with more individualized support. “I love the integrated model with a mix of kids who have needs and those who don’t; kids learn a lot from their peers,” Klaristenfeld says.
This learning goes in both directions; research finds it helps kids with disabilities feel included in society early on and accelerates their learning and development. Typically developing kids gain social and developmental benefits from a learning environment with peers of different abilities.
What to consider when choosing inclusive care
Consider what services your child needs and if they can be fulfilled within the inclusive program, Klaristenfeld says. Post-covid, some centers are still restrictive about outside therapists coming in, she adds.
When Blunkosky first sought inclusive daycare for Josie, she was stunned by how many wouldn’t accept children not potty trained by 3. So even if a center is advertised as inclusive, she says, find out exactly what they will and won’t do.
Respite care
Unlike the options above, respite care is a one-off or occasional reprieve for parents. Caregiver burnout can easily hit parents of special needs children, so those needing a break can explore the many options for special needs respite care. They range from caregivers who step in for a few hours or overnight to week-long camps.
You can pay out-of-pocket for respite caregivers, though certain programs are free, and Webber says some private insurers have respite care funds available.
Considerations for choosing special needs child care
“Making a decision between in-home, specialized or inclusive child care is strongly dependent on your child and family’s individualized needs,” Nelson says. Here are some points to weigh beyond cost.
What are your child’s medical and accessibility needs?
While your child’s condition doesn’t define them, Nelson says, it helps to start by finding care providers who specialize in it—then fine-tune based on your child’s needs and wants.
“A child with complex medical needs may thrive best in a skilled nursing day care facility, but a child who requires skilled nursing level care who is also immunocompromised may have better success in a home care environment,” Nelson explains. “Tailoring your child’s needs to the care environment is vital in success for your child, your family and the provider.”
Hartrich says many children end up in settings that don’t meet their needs, so it’s crucial to be honest when comparing providers and ask how they’ll support your child.
“Tailoring your child’s needs to the care environment is vital in success for your child, your family and the provider.”
— Dr. Hailey Nelson, complex care pediatrician at Valley Children’s Healthcare in Madera, California
What are your child’s socialization needs?
Klaristenfeld points out that the size of a group that provides perfect socialization for one child might be overwhelming for another.
This is also a consideration with in-home care, Blunkoksy says. Is the caregiver going to just plop the kid in front of a TV? Then perhaps they’re better off at a program. “But if the caregiver is very involved, and brings them into a lot of community settings, like the park, storytime and places where the child can have relationships, you can still be a part of the larger community with medically fragile kids,” she explains.
Hartrich notes that if the child care setting doesn’t offer adequate socialization, parents can find other ways to meet those needs, like arranging playdates or going to the playground.
What’s covered by your insurance or benefits?
Not all providers will have room or be able to work with the terms of your benefits. “Just because your child qualifies for these services doesn’t mean you can find a provider,” Klaristenfeld says. “Post-covid, there’s a lack in the marketplace, and a lot of people have had to pay for things privately to set up children for success later in life.”
Ways to pay for special needs child care
Costs depend on factors like your state’s programs, your child’s conditions and the type of care. Here are some common ways to pay for it.
Government assistance
Individuals with Disabilities Education Act (IDEA)
Federal funding from this law allows states to offer free early intervention services for certain disabilities from birth to age 2, and from age 3 to 21, free appropriate education in the least restrictive environment possible.
Medicaid waivers
Medicaid isn’t only for impoverished families, Klaristenfeld says; she always encourages parents to apply since state waivers cover children with certain disabilities. Just prepare to wait; it took her daughter years to receive a diagnosis that made her eligible, and they’re a few months into the year-and-a-half-long process. Many parents have to pay for care during these gaps, she notes. Webber adds the extent of your benefits and costs depends on your state. “In Texas, there are waivers the family can apply for, but the waitlists are years long and do not provide adequate funding,” she explains. “But it can help with offsetting the cost of child care.
Supplemental Security Income (SSI)
If your family has limited income and resources, and your child has a significant physical or mental disability or medical condition, you might qualify for monthly payments from this federal program.
Health insurance and health savings plans
Find out if your health insurance offers any coverage for special needs child care or therapies, Nelson urges, especially if you don’t qualify for government-funded programs. “Children that require specialized medical needs throughout the day or one-on-one supervision may require child care that can be billed through their health insurance or intervention services,” she says.
Additionally, if you have a Health Savings Account or Flexible Spending Account, you can often use these tax-advantaged accounts to pay for dependent care.
The bottom line on special needs child care
Being a parent of a child with special needs comes with many gifts, in addition to unique challenges, one being finding the right type of child care. The good news is there are a vast number of special needs child care options, free care through government benefits and many organizations to help.
This hard work finding quality care now can make all the difference in your child’s future. “Parents are often a child’s best advocate to ensure they are placed in an appropriate childcare setting to meet their needs,” Hartrich concludes.