Tuesday, October 29, 2013

Self Advocacy: Fighting For Understanding, Acknowledgement and Accommodation

When we are future planning for our children, we assume they will get the accommodations mandated by the Americans with Disabilities Act, and that is not always the case. I invited Ondrea to share her recent fight for transit support because the present system uses medical standards to determine eligibility for para-transit support, and this criteria excludes the entire population of individuals who may not have visible impairment, but who still need services like para-transit support to help navigate their communities independently and without harassment. So as Ondrea relates her situation and her determination to fight for the right to ride the Ride para-transit service, we who are parent advocates might take a good hard look at our own communities and see how we can change what eligibility is to gain more autonomy for everyone whose challenges may not be apparent.  Learn more about Ondrea by  clicking here. KC

 By Ondrea Marisa Robinson

The need for services is not easy for anyone with a disability to get, because sometimes the door slams in his/her face when he/she really needs that door open.  The example I am about to give you applies to me:
Image description: RIPTA RIde vehicle #0141
in downtown Providence
I found out that I had to re-apply to receive my ADA, which is the American with Disabilities Act status, in order to ride the RIDE van to and from places in place of managing the transitions for so many buses in order to get from Point A to Point B to Point C. ( I had to get my primary care physician to fill out the medical part as well.)  Once the application was sent in for review, I had to wait a little while before I got a letter in the mail indicating if I was accepted or denied.  The truth is, I did not know I had the ADA after receiving a letter on two different occasions, saying that I was denied.  I was able to actually take the RIDE van to the Autism Project in Johnston, RI, and back home, for free, although I ended up paying $4.00 when I was going there.  (The ADA fee is $4.00 each way although I do have a bus pass.  It makes no sense to me why I have to pay, but that's the rule.)  It seemed like a long time for a letter to be sent, so I decided to call RIPTA and ask what was the status of my application was.
RIPTA Gillig #0517 buspicks up customers
on the #51 line at Kennedy Plaza.
I was told I was denied, because the primary care physician had checked that I was able to take the bus independently and that I did not need an escort.  I can get to and from a bus stop.  I can climb the railings just fine.  I can understand directions.  I won't deny all that, because it is true.  However, I get anxious at times when the bus is crowded, and sometimes it is not pleasant, either, when I have to deal with some people who just say some inappropriate things.  It is bad enough I have to take three buses to get to destinations like Providence or Johnston.  I tried to tell the customer service representative that anxiousness and multiple changes of buses were the issues, but she was going by what the primary care physician said (although I will not deny it).  To me, that's clueless, because if those two ladies were in my shoes, they would know how it feels to have autism.  Having autism related sensory issues and being anxious is challenge enough to have the reasonable accommodation the RIDE van service provides.

It's not fair that I have to be denied, but I'm going to do everything that I can to fight this, and I will not do it alone.  But I must remember I'm not the only one who is going through a situation like this.  Despite what's going on, I'm going to keep on smiling and let God do His work.

Images source: Wikipedia.


  1. Ondrea, I am sorry this happened to you. I find it very frustrating to keep "proving" that we are disabled people in order to get services. I have a few thoughts that I hope are helpful.

    Some of my friends only need the paratransit part of the time. So they write the information for their doctor before they give the doctor the form. And then the doctor writes in their information (copying their letter).

    In your situation, the letter might say:
    "She is unable to take the bus for long distances, when more than one transfer is involved, and during rush hours and other times when the transit is crowded. The medical reason is [you fill in your information here]."

    I also had to educate my doctors that sometimes they need to check a different box. So, in your example, the doctor needs to say "no" to the question of "Can she ride the bus independently?" Because when everything is easy, you can. But when things are hard (crowded bus, multiple transfers) you cannot. So the doctor needs to use the criteria of when it is the hardest for you. Anxiety is covered by the ADA.

    You might think if this is helpful to you. And if it is, you might want to have your doctor fill out a new form (again) that documents that you need paratransit some of the time.

    I hope this helped.

  2. Thank you Corbett this is very helpful.

  3. I was able to assist my sister in getting a RIde pass to her day program, her doctor really understands the nuances of the process. Maybe you could reiterate to your doctor that all evaluations for adult services have to be filled out describing your worst day.
    Good luck, I hope you get the services you need.