Families with children who have special needs face additional barriers to finding child care

(WSAW) - Twelve years ago, when Samantha Brown had her first child, Malaika, she was living with her mother and working the night shift as a certified nursing assistant in Merrill. Brown sent Malaika to the child care center her mother worked for half of the day so she could get some sleep after work.

It was also what she could afford. A couple of years later, she had her son, Emercyn.

“I was paying about $200 a week for them to go to daycare part-time,” she stated.

Brown was with their father at that time. Due to the cost of child care, she pivoted to staying home during the week and worked the weekends to provide the majority of that care herself.

Then, Emercyn got a little older and she explained he developed some additional needs.

“I’m having a harder time now with child care with having a child of mental illness issues and being diabetic, he’s Type 1.”

Though her children attend school full-time, she said she has to be nearby and available at a moment’s notice.

“If there’s (sic) problems at the school, I go to the school. If he’s not having a good day... So, I’m mainly home, you know, but (inadequate) child care has definitely put a damper on working more.”

This single mom works on the weekends at an assisted living facility, in addition to receiving some government benefits. She is going to school part-time during the week to get a degree in substance use disorder counseling and human resources. She said she knows those skills are needed in the community and the hope is she will be able to provide more income for her family too. This allows her to remain flexible with Emercyn’s needs, but it does not alleviate her child care problems.

“Weekend care is really the biggest thing right now. I mean, a lot of people that have-- work Monday through Friday, they don’t want children on a weekend.”

When she works Fridays, she has a friend who helps watch the kids before they head off to school. On the weekends, she often leans on family and friends.

“You don’t want to burden them and I feel like sometimes I am burdening them or I don’t want them to feel sorry for me. So, I try to do it all on my own and figure it out.”

As a last resort, with her daughter now 12 and able to babysit, she has Malaika take charge.

“We’ve had a few incidents where Emercyn’s destroyed something in the home, you know, and I’m at work and I can’t leave school. So that’s the hard part, you know, being at work and not stressing out about what’s going on at home. Is everything okay? I typically try to take a break, though, and call home and make sure everything’s okay, or I’ll message one of the neighbors, ‘Hey, can you go check on my kids?’”

She knows it is a lot to put on her daughter when she cannot find someone else, but she does not feel she has a lot of other options.

According to the latest data from February from the Wisconsin Department of Children and Families, 75% of the zip codes in Lincoln County are considered child care deserts, including Brown’s hometown: Merrill. Brown said they do have some resources through the county, which are helpful and they qualify for respite care, but it is up to her to find that respite care.

“That’s a struggle right now. There’s (sic) so many places that are hurting for people, and nobody wants, you know, 10 hours a week.”

She also cannot just leave Emercyn with anyone.

“It’s a lot that I have to explain to that person with medications and insulin and everything.”

She added a lot of people do not understand diabetes, let alone mental health issues.

“Some daycares aren’t educated or don’t have the funding for the education for these providers to have, and then I feel like I’m stuck.”

Spending additional time and providing lengthy explanations are common experiences amongst families with children with special needs, along with the fear that their children will not get what they need from other care providers.

“It’s definitely a struggle and leaving my child and care that I can trust somebody is a big one too,” Brown expressed.

Equal opportunity required, not equal quality

The Americans with Disabilities Act places protections that do not allow child care providers, except for those run by a religious entity, from turning families away due to the child’s disability or claims that they do not have enough training to care for a child with particular needs.

“A child care provider has to make reasonable modifications in their policies and procedures to allow children with disabilities to participate in their programs,” Monica Murphy, a managing attorney with Disability Rights Wisconsin stated. “That’s not a limitless requirement, and they don’t have to do things that would be a fundamental alteration of their program.”

What is fundamental, as will most caveats of the ADA, depends on the scenario. It depends on what services they already offer, the age of the children they serve, the type of care facility, the resources available to the provider, etc.

“What the ADA requires is equal opportunity,” Murphy explained. “The child with a disability may not get an exactly equal benefit from a program, maybe in part because of their disability or they can’t process something or they don’t have the attention span or whatever it may be, but the idea is about equal opportunity.”

The accommodations may be required, but it does not mean those accommodations will result in quality care.

A lack of options

Several parents told 7 Investigates that they struggle with finding care for their child with special needs. Childcaring, the child care resource and referral agency for the central Wisconsin region also echoed the additional challenge families in those situations face.

Another single-mother in central Wisconsin explained in an email that her 3-year-old daughter has an autoimmune disorder and cannot have gluten. Sierra Willard was able to secure child care with a provider that they loved, which allowed her to continue her college education full-time so she could get her bachelor’s degree in special education. However, COVID-19 exposures caused the provider to close down twice over three months for a week each time. This caused Willard to take off of work for each of those weeks and caused problems for her job. She said it was a challenge to find a provider who had spots open and could adequately accommodate her child’s needs.

Her daughter ended up getting sick and required one-on-one care. She could not find a provider, so she left her full-time job working at a school district that she “had worked so hard to get because” she could not find reliable care for her daughter. She switch to working part-time at her boyfriend’s small business to allow her the flexibility to stay home with her daughter when needed.

“I now make $12 an hour and pay daycare $150 a week no matter if she goes all week,” she said. “The math on that is sickening. I had found a nanny for that one-on-one care who wanted $20 an hour, meanwhile, I only made $17 an hour when I worked in the school district. With those numbers, I ultimately decided to stay home. It is hard to support a family on only one income.”

Listening and responding

Carol Wesley, the executive director of the Achieve Center in Wausau has heard the need as well. The center already “provides assessment, treatment, and support services to children and families with developmental disorders, chronic health problems, and physical challenges.” The center was created in 2007 after listening to the needs of families in central Wisconsin who would otherwise be traveling several hours to places like Milwaukee or Madison for treatment services for people with special needs.

In 2019, they wanted to assess families’ needs again, surveying those they serve about what other gaps exist in their care.

“Almost 100% came back: child care integrated with treatment,” Wesley stated.

That need for specialized care is something care providers also told 7 Investigates is lacking in the area. Wesley heard the same as they looked to see what options families had in Marathon County.

“The child care that we surveyed all said the same thing: We provide excellent care for children, but we don’t have the tools and the personnel to be able to meet. The needs that children with special needs have.”

That is not to say there are no programs available for children with special needs, or even a child care facility that has a focus on providing care for children with special needs. However, the Achieve Center’s upcoming treatment-focused child care center, as NewsChannel 7 first reported in March, will provide its own unique opportunities for families with children with special needs.

“The focus is on treatment integrated into child care, and so each child who comes to the Achieve Center between the ages of 20 months all the way up to age 5 will have their own individual treatment plan and will be receiving treatment, whether it’s physical therapy, occupational therapy, speech and language, or behavioral therapy from licensed clinicians,” Wesley explained. “We are cross-training the child care teachers to assist with the therapeutic process, and so when a child receives their individual therapy, the clinician will instruct the therapeutic child care teacher as how to implement, integrate, what the child needs to work on.”

The teachers will help to reinforce the therapies through exercises, activities, and play.

“Early intervention for these kids is just crucial,” she said. “We want to have kids prepared to enter public school, or the school of their parent’s choice, ready to learn, able to be with other kids socially, and having the confidence in themselves.”

The center is partnering with Aspirus to staff the pediatric and therapeutic staff. It is actively working to hire early childhood educators who want to work with this population of children. She said with the mixed revenue between the child care center, the other services they provide, and grants, they will be able to pay their teachers more than the typical center wage.

Families are encouraged to get an enrollment packet and apply. The treatment the children will receive will have the ability to be covered by families’ health insurance. The center will also accept Wisconsin Shares assistance, Children’s Long-Term Support, and other financial assistance programs. Wesley said the plan is to be able to begin operating the child care center by the end of June.

It will only accept 30 children into the center, which means there will still be a lot of families in need of care.

Murphy’s advice for families talking with care providers: “Don’t minimize your child’s disability; don’t exaggerate your child’s disability. You know, identify what needs or what might be unique needs in the child care setting and make sure your provider understands that and is capable of doing that.”

For providers, she said do not be afraid to get creative to try to be inclusive for all kids.

“Kids are just kids, and if you’re used to working with kids you should be OK with a kid with a disability,” she said. “I think some people are afraid that kids with disabilities are more fragile or they’re going to be more trouble or something like that, but I think it’s all in how you approach it.”

Like 9-year-old Emercyn, who loves crafts, 4-H, video games, and school; Brown said his principal, Mrs. Stutzriem, is a godsend and very understanding, helping to ensure Emercyn can get what he needs.

Disability Rights Wisconsin has A Thinking Guide to Inclusive Childcare to help families and care providers navigate that partnership. This guide from the Wisconsin Child Care Information Center helps families and providers to understand the ADA requirements as well. The Wisconsin Department of Children and Families also provides resources to help providers to have inclusive care.

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