A More Accessible America

My boys and I like to go to baseball games. We've been to Baltimore for the last two years for an Orioles game, and we have season tickets to the Richmond Squirrels baseball team. But, finding accessible seating seems to always be an issue. I wrote a blog last year about the Richmond ball park.

But all that should now change with the revised and expanded Americans With Disabilities Act. The regulations apply to the activities of more than 80,000 units of state and local government and more than 7 million places of public accommodation, including stores, restaurants, shopping malls, libraries, museums, sporting arenas, movie theaters, doctors’ and dentists’ offices, hotels, jails and prisons, polling places, and emergency preparedness shelters.

The 2010 standards also include, for the first time, standards on making swimming pools, parks, golf courses, boating facilities, exercise clubs, and other recreation facilities accessible for individuals with disabilities. Entities covered by the ADA have until March 15, 2012 to comply with the revised standards.

I suggest you visit the Department of Justice's ADA website for more details.

(Although this is a move in the right direction, I am really worried about where things are going with the Federal budget. I fear the next areas to receive cries for cuts will be the entitlement programs like Medicaid. Having accessible seating at the baseball park means little if my children can't receive the medical care they desperately need.)

Lawsuits Abound

Denise Payne, a Florida resident who has cerebral palsy, and her business partner, Robert Forlano, formed a 5013C charitable organization called the National Alliance for Accessibility. As in Virginia, all charitable organizations are required to register with the Florida Department of Agriculture and Consumer Services. Ms. Payne’s organization, however, is not registered as required by law.

Ms. Payne and her organization filed six lawsuits in the Roanoke, Virginia federal court alleging many area establishments are not accessible. Included in the list of establishments are several shopping malls, two hotels and Radford University. The six cases target Virginia, but Ms. Payne has recently filed over 200 similar cases, all alleging a lack of accessibility.

While I am in full support of pursuing issues through legal means IF ALL OTHER ATTEMPTS TO RESOLVE ISSUES FAIL, I do not support this shotgun approach to demand change. I have to wonder what the real motivation is in all these cases.

As you know, I recently started a new website titled www.ustooplease.com. I purposely added the word ‘please’ to that web address. And as I mention on that website, I truly want to raise awareness about accessibility and inclusion. I share all my observations on that website with the businesses I review. I offer a list of resources to help those businesses become more accessible and inclusive.

I believe communities will begin to welcome everyone when everyone works together to realize true inclusion.

Like a dog that is beaten every time it urinates in its owner’s house, it will eventually become housebroken. But the dog will never truly be a part of that owner’s family – it will remain an animal that is continually beaten to achieve the owner’s goals.

I don’t want businesses to make changes for accessibility and inclusion because they are beaten into doing so. I want their decisions to be based on the realization that an inclusive community is a true community.

My website is www.ustooplease.com. Ms. Payne’s should be www.ustoooriwillsueyou.com.

(I searched and searched for Ms. Payne's and her organization's website but could find nothing. Nor could I find a telephone number after almost an hour of searching the web.)

It's a Launch!

Many years ago, I would go shopping or out to a restaurant without a thought about accessibility. I would walk up curbs without thinking about people in wheelchairs. I would get annoyed with store aisles that were so packed with merchandise that I couldn’t find what I wanted. But, it would never occur to me that some people wouldn’t even be able to move around that same store. And like a lot of other people, I would stare at a blind person using a cane, but I wouldn’t ask if I could assist or direct them to the checkout register.

All that changed when I adopted four children, two of whom are in wheelchairs, one who is blind, and one who doesn’t handle too much sensory input very well. Although those adoptions began 14 years ago, I’ve not seen much progress related to accessibility in my community or other communities my family visits.

So I decided to create a website as a way to raise awareness about accessibility and inclusion. My new site is called US TOO PLEASE.



As my children and I travel through our community, I will review the places we visit. I will write about how physically accessible they are – how welcoming they are to people with disabilities – how inclusive a product or service they offer – and whether or not they make reasonable accommodations for people with disabilities.

I do not mean US TOO PLEASE to be an exercise in bashing. I will share the good as well as the not so good, but I will always let each establishment know the results of my review. I will offer to publish any comments they may have, and I will inform them of resources that are available for improving their accessibility and inclusive practices.

My sincere hope is that this endeavor will help to improve my community, as well as all communities, for people with disabilities. I want to leave a legacy of inclusion for my children. I want to make a positive difference in the lives of all people, especially those with disabilities.

Please visit my new site and let me know what you think! And if you have any specific places you would like me to review, just send me an email.

p.s. Having a new website does NOT mean I will devote any less time to this blog - my baby that has allowed me to find my voice, to make special friendships, and to keep me sane! I will still be writing here every Monday through Friday as always!

What Do You Think?

Over the years I have been blogging, I've done many posts about accessibility and accommodations. My recent post about Joey's Hot Dogs was one of those. My idea is to expand those posts and reviews, perhaps even into their own blog.

With aging baby boomers and more premature babies surviving, disability is becoming an even more recognizable state of life. I don't know about the specific areas in which you live, but in my area, I don't feel disability and needed access and accommodations are given much attention. The intent of my new blog would be to bring some attention to those things.

I will plan on one post a week about a place - store, restaurant, museum, school, park, etc - that my family and I visit. Then I will give you my opinion of both the accessbility and reasonable accommodations of each place. The places might be local businesses in my area, state parks, other locations to which we may travel, or chain establishments like Target, WalMart, McDonalds, etc. And I will also plan on sharing my review with someone at the location we visit.

So, what do you think? Is this worth doing? Would such information be valuable to you and your family?

Love Joey's!

Our plans for a Christmas break spent in the Outer Banks of North Carolina didn't work out, but we did have a wonderful time exploring our home city. We went to the zoo, played games at Dave and Busters, made glass creations at a place called All Fired Up, and ate at an awesome hot dog joint.

Joey's Hot Dogs used to exist in the corner of an Exxon gas station about a mile from our house. I had heard about how good they were, but eating at a gas station just held no appeal for me. But a few months ago, Joey graduated to a real section of a strip shopping center, and we had been wanting to try it.

We actually went on New Years Day. There were no crowds when we arrived, but people did start flowing in before we left. The hot dogs were every bit as good as I had been told, but the experience was even better.

Joey's is a small place crammed with tables and chairs. Chip told me before we went in that we would have a tough time moving two wheelchairs about. It was almost as if he was warning me so I wouldn't get upset once we did go in (what? who me?)

But I was very pleasantly surprised. The owner (Joey?) and his helper were wonderful. They helped us moved some tables, asked what we wanted (instead of having us go to counter like everyone else), brought our drinks to us, and the absolute most important thing? They didn't stare!!

The whole experience was a perfect example of accommodations being made, not singling out my family, or acting exasperated that we required some changes. I felt like we were a normal family, out for a normal lunch, and that we were welcomed by the establishment. Go figure.

So Joey, we loved your hot dogs and your apple pie a la mode, but we love you and your business even more. We will be back!!

Suggestions

Yesterday was the last day of ESY (extended school year) services for Ashley. For the last seven weeks, she has gone to school Monday through Thursday from 8am until noon, all in an attempt to keep her skills from regressing. The actual classroom services were largely a waste of time, but that is not what this blog post is about. This post is about school bus services.

Yes, I know, I have written many times in the past about the issues surrounding bus transportation in my school district. Well this post is not going to dwell totally on the negative. Bus services were, for the most part, excellent this summer. They did however start to fall apart this last week of school. And, I have a few suggestions so that doesn’t happen in the future.

The important and very positive thing about bus services this summer was that Ashley had the same bus, the same bus driver, and the same bus aide for six out of the seven weeks. That meant she could build a relationship with them, and she knew what to expect each day. She saw the same children on the bus each day, and the arrival and return times were very consistent. The driver and the aide took the time to talk to me and to get to know Ashley, and most mornings, that meant she skipped happily off to board the bus.

During this last week of school, the regular driver and aide were scheduled to attend training. That meant new staff – people who knew nothing about Ashley, people who were changing things up. And, as most parents of children with disabilities know, changing things up can be a minefield – and it was for Ashley.

So, rather than going on and on with my complaints, today I have decided to offer some suggestions!

First, I acknowledge that my school district really does want to provide acceptable transportation services. I also acknowledge that bus staff have lives too and must sometimes be out sick, out for training and other such stuff. What I would like my school district to acknowledge is that changes, even minor ones, can be very disruptive for many students with disabilities.

For example, some students like to sit in exactly the same bus seat each day. Making that student sit in a different seat could set a day of distress into motion.

Some students like to sit alone and some like to sit with a friend, often a particular friend. Deny either that accommodation, and you may get cursed, hit, bitten, etc.

Some students like music on the bus – some don’t, but all usually want things to stay the same – music or not. Play music when it hasn’t been played before, or all of a sudden stop playing the music – or God forbid, change the station, and you could have several meltdowns.

Each student on the bus has special needs, and some of those needs involve seizures or other such medical conditions. New bus staff needs to know that, or a seizure may be viewed as negative behavior. Some students may be deaf, and if the bus staff keeps talking to them and gets no response, patience will be tested. Some students may have a comfort item that goes everywhere with them. If there is no safety reason for denying that comfort item on the bus, the staff needs to know not to touch it.

These are just a few examples, things which I think could be resolved purely with communication. How hard would it be to have a diagram of the bus seats posted on each bus? Use an erasable marker to show which seat each student prefers to sit in.

Have a one page/one paragraph summary of each student’s likes and dislikes. I’m sure most parents would be happy to provide this. Keep that information in the bus, and require substitutes to read it before leaving the bus garage.

Just a few short minutes in the morning and afternoon for a substitute driver or aide to review information could make for happier students, happier parents, and an easier job for bus staff and teachers.

Do you have any other suggestions for improving school transportation and keeping everyone informed?

No Dragon Training For Us

My boys asked me to take them to a movie this weekend. The movie they suggested was How To Train Your Dragon, and I was just pleased that it wasn't a violent or otherwise objectionable movie.

Imagine my surprise when I found out that NONE of the movie theatres in my city have closed captioning or any other type of accommodation for people who are deaf. Really - we called every single one. It wasn't that they just didn't have it for the movie we wanted to see - every one of them said their theaters have no such technology.

I don't live in a small town. I live in the capitol of my state - a medium sized city with lots of movie theaters. I know there are a lot of deaf people that live in this city because we go to silent lunches and dinners with them. I've never asked those people about movies because I naively assumed there would be accommodations, but you can bet I will ask at the next lunch or dinner we attend.

Really, is this legal? Can anyone enlighten me?

Growing Pains

With one major exception, hospital visits have always been positive experiences for Ashley.

When I first brought her home, the hospital we visited most often was our local Children’s Hospital. Everything about that hospital was geared towards children and their families. Doctors and nurses were specially trained and their hearts were called to tend to the needs of sick children. The facility was set up to put scared children at ease, and to make families a fully participating part in their child’s healthcare experience.

When that local Children’s Hospital became more of a rehab facility than an acute care facility, we were forced to seek care at one of our regular hospitals – hospitals which treat children and adults, hospitals which cater to pregnant women, people with cancer, people needing surgery and people with mental health issues. And still our experience was good since the hospital had a special department to handle the needs of children, even children with disabilities.

But now, as my children are becoming young adults, I’m finding that the special attention paid to making my children with disabilities comfortable during hospital visits is diminishing.

As young adults, my children with special needs are now just patients – patients just like those without special needs.

Have others of you found this to be true? If so, how have you addressed this with your medical support staff? I don’t think my children with special needs always need special attention, but I do believe they need the appropriate accommodations. And I’m not always finding that…

Black and Blue

Ashley bruises easily due to one of her seizure meds. But, when she comes home from school with large, very black and blue bruises, I do have to wonder what happened.

I’m quite familiar with the types of bruises that are accidents on Ashley’s part – running into things, for example. Those things are expected due to her blindness. But, the perfect shape of fingertip bruises on her upper arm, or the large bruise on her wrist are more than likely not due to accidents.

One of Ashley’s teacher and I have been discussing this for a while now. I'm very lucky this year that this particular teacher is a very caring and concerned person, a parent herself of a child with a disability. So, when she sees a bruise, a scratch, anything out of the ordinary, she calls me. We both feel that the bruises we are seeing are happening on the school bus.

And that must be why I received a phone call today from Central Office Transportation. I believe Ashley’s teacher contacted them. The bus staff doesn’t sign – they probably don’t recognize when Ashley is having a seizure –and they don’t appear to understand that transitions are difficult for a child with special needs. As a result, there is a lot of pulling and tugging to get Ashley off the bus.

The transportation person was very professional and very concerned. In fact, many years ago, she used to be Ashley’s bus driver, and still has a fondness for my lovely daughter. She asked me – really asked me – what I felt was happening. She told me she would be pulling the video tapes from the bus to see if she could spot anything. She told me that if training was needed for the bus staff, she would make it happen.

That conversation was one of the most positive I have ever had with a school district employee.

So, even though I don’t have any answers yet about the source of the bruises, I believe I will have answers very soon. Kudos to both Ashley’s teacher and the transportation person. You are both the type of people who make me want to send Ashley to school each day.

Today I am thankful for the upcoming three day weekend. I'm hoping the rain will pass quickly tomorrow morning so we can go apple picking.