I Heard What You Didn’t Say, Loud and Clear

They don't know what they're missing out on.

They don’t know what they’re missing out on.

I always worry about Braxton going to school, growing up and the ridicule and discrimination he might face as he gets older.  For some reason, I never thought about the discrimination we might encounter NOW so early on in his life. That is, until recently, when it kind of hit me right in the face.

Before Braxton was born, actually not too long after I found out I was pregnant, I started calling around to different daycare centers to get pricing and availability sorted out.  Why so early? Well, believe it or not, several centers in our area have completely insane waiting lists for infant childcare.  When I had my older daughter, I waited until she was born and as I called around, I found that many places had a waiting list anywhere from 6 months to 2 years! 2 years!! What the heck?! It’s like you have to call them and say hey I’m working on having a kid so go ahead and put me down on the waiting list…but I digress.  Anyway, surprisingly, the lists weren’t that ridiculous this time around and we toured several different centers.  When we finally decided on one, I also moved Aileen there for after school care.  I honestly loved them from the first phone call I made.  The director was so warm and friendly and genuinely seemed to care more about the kids than the money.  They did happen to be the least expensive in the area, so that was also a plus.  When Braxton was born and our plans were shot, we were so concerned about the daycare.  When we finally got to bring him home, we stopped by the daycare to talk to the director.  We explained that we really didn’t know what was going on, but that Braxton was being sent home with a feeding tube and would have to have his feeds set up with a pump.  She didn’t even bat an eye.  She looked at us and said, “Ok, that’s no problem.” Before he started daycare, I went in a few times around a feeding time and showed the director and the infant teachers how to set up the feeding pump and how to care for his tube.  They were all so amazing and willing to learn.  They quickly saw that it really was no big deal.  We were so fortunate to have a place for him and have been for the past 2 years.

Sadly, we just got news that the center may be closing and we would have to find childcare elsewhere.  The director did tell us she is considering having a home daycare and would love to keep Braxton, and I think we’d consider if that does come to fruition.  To be clear, the center is closing due to issues beyond the directors control.  She and her staff did absolutely nothing wrong, and have been nothing but incredible with both of my children.

By strange coincidence, one of our therapists had recently recommended moving Braxton to a well-known special needs daycare in the area that would help to challenge him more than his current daycare and provide more of a learning curriculum specially geared toward children with varying disabilities.  We loved the idea, but the price tag that came with it? Not so much.  When we learned our daycare might close, it was clear that this was now very much an option we had to consider.  I toured the school and of course fell in love with it.  This director is also very warm and loving and the children are treated with great respect and not given a pass or taken pity on because of their disabilities.  It’s clear that she and her staff do everything they can to enable and empower the children, and I’m happy that we were able to secure a spot for Braxton there.  I really look forward to seeing the amazing progress he is sure to make.

Although we have found a place for Braxton, I’m still very bothered by the experience I had while calling around to different centers looking for a place for Braxton.  I know I’m not the only parent of a child with special needs and it is so disheartening to know how we and so many others are being treated.  It’s downright discrimination, and it’s NOT okay!

When we first moved, I did call around to several different centers in the area and they all said that they couldn’t take Braxton.  Since we were so happy with the current center and were only considering moving him for convenience, I didn’t press the issue and honestly, have forgotten what they all said then.  However, now is a different story.  We were very much in need of childcare and I again called centers near our home and perhaps, because I’m a little more experienced and know my child’s rights, I have a BIG issue with each and every center I called.

I called at least 12 different childcare facilities and while none of them flat out said “NO” (because that would definitely be against the law) the excuses they gave were so incredulous, they would have been better off just saying “No.” I really don’t want to get anyone in trouble, but I want to share our experience because I know we aren’t the only ones this is happening to.  I will share what happened to us, and the rights our children have so that if you find yourself in this situation, you will be better prepared.

When I called each facility, I told them that I was looking for care for my 2 year old who has developmental delays and a feeding tube.  I explained that developmentally, he is about 10-11 months and is in the infant/toddler room in his current center.   These are just some of the “excuses” they gave as to why they would not be able to take Braxton. And responses I wish I had given instead of sitting there like a deer in the headlights.

We can’t guarantee your child will be fed every 4 hours. Umm….really???? Do you often forget to feed the other children in your center?! Braxton’s feeding schedule does not at all deviate from the norm.  His feedings are at 8:30 am, 12:30 pm , 4:30 pm and 8:30 pm…notice anything? Yes, they correlate to the same feeding schedule any “typical” child would be on.  While they sit the kids down for breakfast and lunch, a teacher could be feeding Braxton while the other kids are feeding themselves.  It honestly would not take any more time and would not take the teacher’s attention away from the other kids, which leads to…

Well, he will be in a class with 11 other children and the teacher may not be able to take time away from the other kids to tend to his needs. So have none of the other children in your center ever fallen and hurt themselves, gotten sick, had an accident, or had bad behavior? Each of these situations require one-on-one attention and individualized care and would in turn deviate the teacher’s attention from the other children in the class.  Try again.

State law says that the age between the youngest and oldest child cannot be more than 18 months old. Interesting. He is currently in a class of children where he is more than 18 months older than several of the children.  I spoke directly with the state licensing department and was told an exception to that rule is allowed when medical documentation can be provided showing a child’s developmental age deviates from their actual age.  I’m not asking for him to be in the infant room, but the 12-20 month range would be just fine for him and more importantly, would be allowed.

These are just a few of the most common excuses I received and my thoughts about each of them.  Unfortunately, I didn’t say anything to them, just kinda rolled my eyes to myself and went on to the next center.  By the 4th one I was really deflated and didn’t even want to call any one else.  Their message was coming through loud and clear and I knew no one was going to accept Braxton and provide him the care he needed.   Of all the calls I made, only ONE center was more than willing to sit down with us and try to accommodate Braxton’s needs (which is the law..hmm imagine that?), but unfortunately, she did not have any space available in his age range.  Joseph even said he called around and he told me they didn’t even let him finish explaining our situation before basically saying no.

So what to do now? I looked up the guidelines for the Americans With Disabilities Act (ADA) and what they have to say in direct regard to childcare for children with disabilities.  What I found is interesting to say the least.  If I were a vengeful person, I could probably sue each one of the centers I called and win.  Then, we’d own our own daycares and could hire the staff of our current center to work at one of them! *insert evil laugh* OH, I’m just kidding.  In all seriousness though, if you are a parent of a child with special needs and having trouble with finding childcare, know that you and your child have rights!! Your child is protected by law!!!

Without reading through the entire ADA guidelines, I found this handy “Commonly Asked Questions”  about how the ADA guidelines apply to childcare.

Q: What are the basic requirements of title III?

A: The ADA requires that child care providers not discriminate against persons with disabilities on the basis of disability, that is, that they provide children and parents with disabilities with an equal opportunity to participate in the child care center’s programs and services. Specifically:

  • Centers cannot exclude children with disabilities from their programs unless their presence would pose a direct threat to the health or safety of others or require a fundamental alteration of the program.
  • Centers have to make reasonable modifications to their policies and practices to integrate children, parents, and guardians with disabilities into their programs unless doing so would constitute a fundamental alteration.
  • Centers must provide appropriate auxiliary aids and services needed for effective communication with children or adults with disabilities, when doing so would not constitute an undue burden.
  • Centers must generally make their facilities accessible to persons with disabilities. Existing facilities are subject to the readily achievable standard for barrier removal, while newly constructed facilities and any altered portions of existing facilities must be fully accessible.

Q: Our center specializes in “group child care.” Can we reject a child just because she needs individualized attention?

A: No. Most children will need individualized attention occasionally. If a child who needs one-to-one attention due to a disability can be integrated without fundamentally altering a child care program, the child cannot be excluded solely because the child needs one-to-one care.

Q: How do I decide whether a child with a disability belongs in my program?

A: Child care centers cannot just assume that a child’s disabilities are too severe for the child to be integrated successfully into the center’s child care program. The center must make an individualized assessment about whether it can meet the particular needs of the child without fundamentally altering its program. In making this assessment, the caregiver must not react to unfounded preconceptions or stereotypes about what children with disabilities can or cannot do, or how much assistance they may require. Instead, the caregiver should talk to the parents or guardians and any other professionals (such as educators or health care professionals) who work with the child in other contexts. Providers are often surprised at how simple it is to include children with disabilities in their mainstream programs.

Child care centers that are accepting new children are not required to accept children who would pose a direct threat (see question 8) or whose presence or necessary care would fundamentally alter the nature of the child care program.

Q: Must we admit children with mental retardation and include them in all center activities?

A: Centers cannot generally exclude a child just because he or she has mental retardation. The center must take reasonable steps to integrate that child into every activity provided to others. If other children are included in group sings or on playground expeditions, children with disabilities should be included as well. Segregating children with disabilities is not acceptable under the ADA.

These are just a few questions I found that apply directly to our situation, and I’m sure can apply to many others.  As you can see, the excuses the center gave us are in direct violation of the ADA guidelines at their most basic level! Admitting Braxton with a feeding tube, does not fundamentally alter a program, I think that asking a teacher or the director to learn how to tube feed is not at all an outrageous request and definitely falls in to the reasonable modification guidelines.

It’s so sad that a center would go to such lengths to exclude a child based on their own preconceived notions.  The tragedy would be a parent not standing up for their child.  As parents, we are our child’s voice! This is the time to become an advocate for your child and to fight for what is right.  While I’m not going to sue any of the centers, I do intend on reaching out to them again to let them know that what they are saying to parents in wrong and could get them in to a lot of trouble.

THIS IS NOT OKAY!

It is NOT okay to make a parent feel inadequate and to force them to make decisions like quitting their job because they cannot find childcare.  As a special needs parent, our job is immediately more difficult due to the battles that we have to face.  As we face each challenge, we learn to be better prepared and better equipped.  Parents need to educate themselves on the laws afforded to our children and how they apply in these situations so that they can face these centers and demand equal treatment.  This is flat out discrimination and it is unacceptable.  I could march in and demand that they accept my son, but at the same time I have to ask if I really want him to go somewhere where he already isn’t wanted.  Children can sense those things.

So, I’m not saying to go in and demand to be enrolled, but do point out the flaws in the system and hope for change.  Our children can light up a room simply by being in it.  Special needs children know joy like no other person can ever comprehend, and at the end of the day, these centers are missing out, not our kids.  If we can point out the mistake and a center chooses to accept our child, I hope that they will see just how much he can enrich their lives and potentially change their perception so that they might willingly accept all children despite their abilities.

Our children are not a burden.  They may require a little more care and attention, but what child wouldn’t benefit from that?  Our children do not fundamentally alter a program.  Instead, they can truly enrich the program.  The rewards for teachers are so great.  As a teacher, knowing that because of YOU a child can walk or speaks their first word, can make you so proud and remind you how important your job really is. These centers will never know that reward.  You could also be teaching the other children in the center about inclusion, about acceptance, about tolerance.

Perhaps, enrolling a child with special needs can fundamentally alter a program…it can create an entirely new program focused on love and acceptance for everyone.

 

Update:: Here is a link to another page on the ADA site about the application of the act. About halfway down you will see the red header “Childcare” and there are several examples of settlements and cases where parents successfully challenged the system. http://www.ada.gov/5yearadarpt/ii_enforcing_pt2.htm

3 Comments

Filed under Kids and Family, Life, Special Needs Child

3 responses to “I Heard What You Didn’t Say, Loud and Clear

  1. Pingback: Thankful Thursday: Who Do YOU Run For? | Journey Full of Life

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