When programs won't accommodate kids with special needs

The door to the room didn't have a sign saying "No kids with special needs allowed" but it might as well have.

We're at the Jersey shore on vacation this week, and I'd signed the kids up for an evening program at a hotel we like. The staffing is handled by a caregiving service, one we'd personally used over the years on vacation. The woman who owns the service knows Max, and once babysat for him and Sabrina.

I parked the car while Dave took the kids inside. It was our first evening of vacation, and we had plans to celebrate with dinner for two; Dave made reservations at a restaurant we'd been wanting to try. As I headed down the hallway, I saw Dave and the kids leave the room where the program was and head around the corner. I thought that was odd. When I found them, I saw Dave talking with the concierge. 

I'd booked the reservation days ahead of time. I'd told the staffer that Max had special needs, and that  he'd been to the program before. The concierge said she'd been trying to reach me (unfortunately, they'd gotten my phone number wrong). The owner of the caregiving service had informed the hotel that the program could not accommodate Max, she told me.  

I was furious. And bummed for the kids, who'd been looking forward to going. And bummed for me and Dave, too. I asked to speak with a manager as Dave and the kids walked away. I told him how wrong it was not to include kids with special needs. He apologized profusely, but there was nothing he could do, he said, because the program was "outsourced" to the sitting service (which he noted again when I called him). I walked off to grab Dave and the kids and leave. The manager followed and offered to host us for dinner at the hotel's restaurant. Given that our plans had been ruined, we thought it was fair to accept.

After we sat down at the table, Max cried. "Am!" he said. "Am!" ["Camp!'] It literally made my heart hurt. I reassured him that we'd do something else that was fun and that we'd have an ice-cream party at home. Sabrina was disappointed, too. We talked about what it means for places to include kids with all kinds of abilities, and how wrong it was not to let Max come to the camp.

A program refusing to accommodate a child with special needs isn't uncommon; it's happened to us before, as well as to other families I know. And it wasn't the caregiving company owner's fault that Max showed up when he wasn't wanted...but it was seemingly because of her that Max was unwanted. I called her; I left a message saying I considered it "unfortunate" when places didn't accommodate Max, said I'd be writing something on my blog, left my number and asked her to call back. Instead, she sent several long texts.

I'm sharing bits below. I'm hoping that people running kid activities, classes or programs who aren't amenable to letting kids with disabilities join in will read this and see just how exclusionary it is...and why their perceptions may be wrong.

"Max cannot feed himself in [on] his own, our staff needs to serve all campers. Max needs one on one assistance which we can not provide."

Actually, Max is now feeding himself on his own and has been for some time. Like any children, those with special needs can progress; they do it on their own timeline. Just because a child with special needs is unable to do something one year, it's wrong to assume he will never be able to do it. Our children may be delayed, but they have the potential to develop.

"We are not equipped....to accommodate special needs children there it is not a school, it is a csmp [camp]" And then, in another text, "As much ad [as] we sympathize of [with] you you must consider out [our] staffs lack of knowledge and ability yo [to] cope as well."

What she seems to have been saying is, only people who are certified in special ed can help children with special needs in in a camp-like setting. I obviously can't speak for all kids with disabilities, but I can say that the care that my son currently requires in such a setting is this: Help picking up a cup to drink, help pulling his pants up and down during toileting, help with craft projects. It's similar to the care a young child might require. Also, you need to have patience with communicating with him. For these kinds of things, I am 99.9 percent sure, you do not need a special ed degree. Dave and I had always felt comfortable leaving Max in the care of experienced sitters who'd been background checked, as this company's sitters are.

"We can not accept children who have difficulty communicating to staff...." And from another text, "If a child can't express their desires, wants or needs then obviously this makes it difficult for a staff member to assist. This is not beneficial to the child and it can cause frustration to both parties. We obviously know we can contact parents but like last year phone calls are not heard as most parents are preoccupied."

She was referencing last summer, when Max wet himself and the program staffers tried to contact us only we didn't have cell phone reception in the restaurant, we eventually realized. Now, in terms of not accepting children who have difficulty communicating to staff: The program at the hotel accepts children ages 3 to 12. It is hard to imagine that every single 3-year-old (or 4-year-old or 5-year-old) is able to clearly communicate his "desires, wants and needs." Worse is the assumption that Max cannot do so. Max communicates in his own way—nodding, saying "yes" or "no," gesturing, speaking some words and using a speech app. I am not saying he communicates like another 11-year-old can; he does not. But he is capable of expressing himself. There is just one communication issue, as I see it: People who refuse to engage. 

"One aide for Max last year told me she spoke with your husband when Max was picked up. I was there too and said we had difficulty and that children must be independent. I am sorry you don't remember this." And then in another text, "These verbal messages were relayed in a kind manner so that you understood this camp wasn't right for Max. This message as clearly stated by both...and myself and as kind as tactful as possible stated -------- Apparently and obviously wasn't understood or accepted!...." 
Neither Dave nor I recall what was said a year ago, but it was evidently so "tactful" that we didn't get the memo that Max was no longer welcome in the program. Why would we have returned otherwise? This summer, we assumed the arrangement would be the same as the one we'd gladly and gratefully worked out in years past: that one of us would come back should Max need toileting help. This is something we've done with hotel programs when we travel. As for being "kind" to us in relaying that a program isn't "right" for Max, we don't need kindness because including a child with disabilities in a program, event or activity is not an act of kindness. It is fair. And in a place of public accommodation, it's the law.

"I will keep your voicemail as a threat to us and [the hotel] and submit it to their attorneys for proof ad [and] evidence in a court of law if our companies are negatively or discrinatorily [discriminatorily] mentioned on line."

Yah, discrimination: Let's talk about discrimination and the Americans with Disabilities Act (ADA). Title III specifically states that individuals with disabilities cannot be excluded from "public accommodations" because of a disability. "Public accommodations" applies to any private place of business or nonprofit group that's open to the public for sale or lease of goods and services, regardless of size—which includes restaurants, movies, hotels, places of recreation, day care centers, camps and more. (Private clubs and religious organizations are the only private entities explicitly exempt from Title III requirements.) There is also discrimination that plays out in the code of good old morals and ethics. Parents of kids with special needs have every right to speak up when they face what they believe to be discrimination of any kind.

"I don't appreciate words put in my mouth nor look like the bad guy here against a precious child to who we bent over backwards to accept, assist with love and care, so you could enjoy a quiet dinner."

Again: Kids with special needs are not charity cases that childcare providers need to "accept" or "assist with love and care" any more than any other child they take care of. Don't all children deserve this? I wondered if this all boiled down to financial concerns. The owner had a third sitter on hand last year (a nurse) and, as she informed, me, "the hotel only pays for two staff members." I understand that small businesses may not be equipped to handle extra costs like this. If we had known that this was an issue, we might have appealed to the hotel. But we were never given that chance.

"Unfortunately, not everyone agrees with you and your husband on how easy it is to care for a special needs child especially when we don't have the experience."
Well, whoa. I definitely don't think childcare is easy (and I don't appreciate words put in my mouth). And yes, Max requires more attention than a typical kid his age, but he shouldn't be excluded from programs or activities because of that. Caring for him means extra assistance at times, but it also means connecting with parents about what will make things work for everyone involved when concerns arise. Caring for him means believing that children with special needs deserve to enjoy the same pleasures that other children enjoy. Caring for him means not assuming that parents think it's "easy" but that they assume it's OK to leave their child in a well-run program they pay for, as parents do.

There is a half-day children's program our kids used to do at a resort we're at each summer (they've aged out of it). The woman who ran it for years, a teacher, was genuinely happy to have Max there and had no issues changing him when he wasn't yet potty trained or helping him in the pool or otherwise. She never said one word about helping him, other than to ask what she needed to know.

There is a gym that Sabrina goes to near our home. On occasion, they have Parents' Night Out. Siblings are welcome and when I have called to let them know Max would like to attend, they've tried to find an additional staffer for the evening because it's a physical event and Max needs a hand. Usually, it's a gym teacher in her late teens who has no experience caring for kids with special needs. Sometimes they've been able to get someone, sometimes they haven't. But they try.

Obviously, laws were instituted because of the considerable uphill battles people with disability face in terms of accommodations. But there are continued issues with a lack of awareness and enforcement, and for parents and others, the challenge of not having the time or resources to push (and push some more) or take action when we're raising kids who already require extra time and resources. I've often found it's easier to walk away and, when possible, find something else led by someone who gets it. My son's biggest disability isn't his cerebral palsy—it's people's closed mindsets.

People should want to include kids of all abilities in activities not because they have to, or out of kindness, but because it's the right thing to do. Yes, it takes some effort. But as Max shows me every day, where there's a will, there's a way.


Image: Flickr/Celine Nadeau