Kids With Special Needs and the Child Care Minefield
Did you know that all U.S. child care centers and home daycares have to comply with the Americans with Disabilities Act (ADA), no matter how small the operation is? Yet parents of kids with special needs are routinely turned away from daycare, or forced to lodge legal complaints against child care providers who do not provide the accommodation their kids are legally entitled to.
I recently spoke with Jana Burke, Project Director of the Rocky Mountain Disability & Business Technical Assistance Center (DBTAC) ADA Center, about the rights and issues surrounding kids with special needs and day care.
We never pursued day care for our son Leo, who has intense autism -- I assumed there was no point, that no "regular" day care would accept or could properly support him. Do you think most parents of special needs kids are aware of their rights with respect to daycare?
The issue is that, for parents of a child with a special needs -- whether those needs were evident at birth or diagnosed later -- they are so overwhelmed with information on [child care rights] that they might only be aware of their rights if they stumbled across that information. There hasn't been much of a concerted effort to educate parents about civil rights that you and your child have.
I don't think you're alone at all, it's more common than we'd like to hear. That's part of the reasons we included a parent education piece [PDF]in our materials -- we wanted to make sure we were doing outreach to parents as well as to daycare providers.
Has this campaign been a long time coming?
We started working on the project just over a year ago. We lauched the first part of August 2010.
We actually do a few different things at the center. We man a national hotline; if you were to place a call in our region, it would be routed through our office. Over the last several years, we've seen a steady stream of calls coming in from both parents of kids with disabilities, and child care providers, and they all have questions.
There were some existing materials out there, but not a whole lot -- mostly in the earlier days of ADA and then it fell off the radar a bit. It continues to be a issue, and we continue to see lawsuits and settlement agreements.
The amount of information on your site is impressive -- not just the child care resources, but also the materials on interacting with people with disabilities with respect, and promoting the idea that we're all part of the same community. Did you have the resources to develop these materials on your own, or did you use outside consultants to help you with the language and perspectives?
Our parent company is called Meeting the Challenge, and we've been around since 1989. We were founded to be an information service for people with disabilities. We pride ourselves that the majority of our staff are people with disabilities, and parents of children with disabilities, and spouses of people with disabilities. There's a wide range of issues that we all deal with -- mental health, mobility, sensory, the gamut. So we have those resources internally. We also have a regional network of individuals we work with. We're really able to tap into those resources and do most of materials development in-house.
We also have a wide range of parenting experiences, including with child care. One staffer was a former child care worker. Another's husband is a pastor, and his church runs a day care center for kids with special needs.
At the moment, many of the special needs and parenting online boards and groups I belong to seem fairly dominated by autism. I was grateful that your materials were more inclusive.
In the trend of child development, autism is a hot button item right now. And parents of kids with autism seem to be more activists than parents groups of kids with other disabilities. The autism parents seem more willing to get involved on the community level, to try to work for change.
You have some fairly wrenching stories [PDF] of parents having their kids with special needs rejected by child care providers. Do you think this has more to do with parents not being aware of their rights, or providers not being aware of their responsibilities? Or both?
Probably a combination of both. In order to see system-wide change, we do need to arm parents with information for self-advocacy. Unfortunately, the way the ADA works is that they squeaky wheel gets the oil.
Also a lot of it is lack of awareness on the part of child care providers. Even twenty years into this, I've been doing a lot of training, around the region, and still people just don't know. They don't realize they're discriminating.
Are providers required to have special training to take care of children with more intense or complicated needs, or who have medical needs? Isn't that training rather costly?
"Accessibility" covers a wide range of acceptability issues, not just the physical, architectural stuff. It could include specialized training, modification of policy.
In the case of where do the child care providers draw the line, it's a little different in centers versus home-based. The thresholds for home-based providers are a little bit lower, because you're talking about a single provider in a residential setting, without much in the way of other staff. But they often make a lot of adjustments to include people with disabilities -- it's more of an attitude issue, as in "How can I help?, " not "What do I have to do to be compliant with the law."
The standard isn't a formula, but what the ADA says is that they need to remove barriers when it's readily achievable to do so. So that means limited financial or administrative burdens. The other limitation is if there is a legitimate safety issue. This is based on medical facts, not fear, not stereotypes -- but if there is truly what is called a "direct threat," then they can limit access. But that threshold is very high.
Do parents of kids with special needs tend to be extra-vigilant about their kids' safety, in your experience or observation?
Sometimes parents of kids with disabilities can be overly protective -- sometimes to the point where they interfere with their kids' independence. It's an issue that we, and other parent centers work very hard on -- educating parents, not just about what their rights are, but to recognize what their child's abilities are rather than their disabilities, and to see the commonalities between the kids. It's really important for their kids' growth and development!
I saw similar issues when I wrote about special needs and hygiene, in terms of parents doing things for their kids even though the kids had the skills to do it themselves.
I actually talk with child care providers about diapering and toilet training, and the fact that they may need to change their policies. A lot of them have policies that says that children have to be toilet trained to be eligible for the program, but that could screen out kids with certain kinds of disabilities who are unable to potty train at the same rate as their typical peers. I'm always careful to point out that if kids are not potty trained based on their disability, that's one thing -- but if they're not potty trained due to overprotective parenting, then that's not a disability! A lot of times, I hear from providers that kids are ready to potty train, but their parents aren't!
More stories and information on kids with special needs and child care:
- From Jana Burke & co: All Kids Count: Child Care and the ADA
- No Room for Suburban Special Needs Kids?
- Mild Spastic Diplegia and Daycare
More from parenting