St. Johns mother paying $20 a day to get son with cerebral palsy to and from school – TheChronicleHerald.ca

Dianne Glass has had to send her son, Adam, to and from school by taxi since 2016 and has been paying out of pocket. Andrew Waterman/The Telegram - Saltwire

At 2 p.m., Dianne Glass leaves Holy Heart Regional High School with her son, Adam, and approaches an idling taxi.

Whats your name? Adam asks the cab driver before handing him a CD.

"Blurred Lines" by Robin Thicke plays loudly through the speakers and Adam screams, Whoo!

Dianne says Adam's excited screams sometimes scare people, but its just what he does.

Not long into the song, Adam asks for the song to be changed.

The Jiffy Cabs driver did not want to be named or photographed, but he told The Telegram they all take turns picking up Adam. He says Adam loves the music to be loud. And when they arrive at their destination, Adam has to speak over the radio to dispatch.

How are you doing today? the dispatcher will ask.

Im doing good now, Adam says.

"If hes going to smash his face off the sidewalk, Im not putting him on a bus."

Adam is 20 years old and has cerebral palsy. Because of his disorder, he will be in high school until the end of this year.

Doctors believe the reason one side of his brain did not develop normally is because he had a stroke before he was born.

The damage to his brain has made him very routine-oriented. When his regime changes, he sometimes begins injuring himself.

After an incident four years ago, when he dropped to the pavement outside his school bus and began smashing his face against the sidewalk, Glass began using taxis to get Adam back and forth to school. She spends $20 a day.

Glass said that on the day Adam injured himself, the bus had arrived with a new driver. But that wasnt the issue for Adam. Instead, he became upset when the bus driver wouldnt allow him to open and close the door something he had been doing for years.

The bus driver said, This is my bus, I get to say what happens on it, and no way,' she recalled.

At the time, she asked the Newfoundland and Labrador English School District (NLESD) if taxis could be provided for her son.

They keep coming back to, The bus is the transportation, and its like, well, if hes going to smash his face off the sidewalk, Im not putting him on a bus, she said.

(They said) we cannot make exceptions, even though they do make exceptions all the time.

According to the Department of Education and Early Childhood Developments alternate transportation policy, taxis can be provided to students, who for medical/exceptional reasons are unable to use regular transportation.

In an emailed statement, the NLESD said while it can't address individual circumstances because of privacy concerns, whether a student qualifies for alternate transportation by taxi is based on information provided by medical personnel; the students planning team at the school (which includes parents); and professional assessment and review at the district and department level.

The NLESD would not agree to an interview.

Glass said the only thing offered to assist her with the situation was a booklet.

(They said), We have these coloured pictures and well show them to him and hell want to get back on the bus, she said. Thats just insulting.

Glass said she was patient for as long as she could be and was very politely jumping through all the hoops.

But after a while, she says, she got tired of feeling like people were telling her to go away.

(They were) treating me like I was asking for something impossible, she says.

Because Glass was paying for the taxi herself, student assistants were no longer allowed to travel with Adam. Shes had to switch her work schedule and has lost hours of work time, she says.

Nancy Reid, executive director of the Coalition of Persons with Disabilities, says people often have disabilities that others cant see, which revolve around routines.

That presents itself in a number of ways, she said. When we can have an individual be able to follow routines, especially follow routines that really arent disruptive to the general population in any significant way, but would enable that person to have that sense of comfort, that sense of routine really enables a person to be able to participate in society in the best way possible.

A fixation on routine can also happen in multiple ways, Reid says.

What it comes down to is the perception of others, she said. We dont know what we dont know. None of us do. Very often there is this expectation of, oh well, theyll get over it. Or, just let it be, its no big deal. But we dont know what those attitudes are doing to a person.

Despite his compulsions, Glass says it doesnt take a lot to keep Adam happy, it just has to be constant.

Its pretty simple, she says. Hes like a very small child.

Adam has lost much of the use of his legs, and Glass says if he was re-evaluated, taxis might be covered since hes in a wheelchair most of the time now.

They dont even seem to be willing to talk to us about anything and I dont know who to go to or where to start, she said.

Were just kind of stuck.

In documents obtained by The Telegram through an access to information (ATIPP) request, emails were circulated among employees of the Department of Education and Early Childhood Development in October 2016concerning a request from the Newfoundland and Labrador English School District (NLESD) for taxis to and from school for a student whose name is redacted, along with much other personal information.

An initial request from a program specialist at the NLESD states, I have consulted with the OT (occupational therapist) at childrens rehab and (redacted) agrees that a taxi may have fewer distractions for (redacted) and perhaps a safer mode of transportation. (Redacted) have been sending (redacted) on a taxi for past several days and there has been no issue. We are requesting that (redacted) be approved for an individual taxi run from (redacted) home on (redacted) and back.

In an email summarizing a previous verbal discussion about the request, it says that because programming would have to be put in place, the department would not authorize a taxi to and from school.

Regardless, a request for alternate transportation by taxi was sent by a program specialist at the NLESD citing safety concerns, which appeared to cause confusion among participants in the email exchange.

The team did not support the taxi, but then they sent in a request for a taxi, the manager of school transportation wrote at the time. So either they have changed their opinion, or they are leaving it up to us to turn down the funding.

This email was sent with the subject, RE: FYI-parent threatens media involvement

On Thursday, Oct 13, 2016, in another email, a program specialist with the NLESD Student Support Services also mentions safety concerns.

Just wanted to do a follow up on the transportation for (redacted), the email states. (Redacted) is a complex case and for a (redacted) he has experienced a lot that coupled with his diagnosis has created the potential for a major safety concern for both (redacted) and other children and adults at (redacted).

An email was sent back from the Department of Education and Early Childhood Development stating they had followed up with employees of the NLESD.

In total, 13 people were involved in the email exchange.

Twitter: @AndrewLWaterman

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St. Johns mother paying $20 a day to get son with cerebral palsy to and from school - TheChronicleHerald.ca