'Differently-abled' in the North Country

By Emmalie Vance
At the age of 17, Chelsea Scheefer went snowboarding in Tupper Lake with some friends. Coming off of a jump, she landed on her neck with the weight of the rest of her body, which was enough to break two vertebras in her back.
“Right away I couldn’t feel my legs,” Scheefer said. “I tried to get up and I couldn’t move. I went to grab my legs and they felt really swollen just like when you get anesthesia at the dentist and your mouth feels huge.”
From that moment on, Scheefer’s life went in a slightly different direction, adding her name to nearly 50 million others in the United States alone who have a disability, according to the 2000 US Census 2000. She said she isn’t disabled, she’s “differently-abled” because she does things that everyone else does, just differently. However, those minor differences require her to enlist the help of assistive technology such as a titanium wheelchair, a lift to help her ascend stairs and hand controls for her car.
Adaptable technology necessary for the disabled to complete everyday tasks sometimes comes with a steeper price tag than an individual can afford. Along with the issue of money, there is also the confusion of where to buy, the application process and the time it takes to get the initial approval, a replacement, or a repair.
In the Plattsburgh area, the North Country Center for Independence (NCCI) is a place to start for disabled people and their families who may have a long list of questions regarding adaptive technology.
“For a person who contacts us telling us about their need, we could give them advice on what would be the proper piece of technology,” said Robert Poulin, systems director at NCCI. “We could then help them find various funding streams if that were something that would be required, but we would not provide funding for purchasing equipment like that.”
NCCI is also available to give suggestions about where to go and help with the application process for funding programs. Medicaid, Medicare, and New York’s Vocational and Educational Services for Individuals with Disabilities (VESID) are three optional programs.
“We have consultants we hire to do an assessment of the person’s needs and whether or not there is a piece of technology, machinery or science that will help them be able to overcome that barrier to them being employed. We basically take that and try to find a way for them to obtain that material,” said Daniel Roberts, senior counselor with the Adult Vocational Rehabilitation Services at VESID.
With help from programs like VESID, payment for some pieces of equipment may be largely or completely taken care of, depending on the person’s financial status, which is reviewed by a counselor such as Roberts.
Typically, he said, if the applicant is working or has a job offer, that business would take responsibility for payment of the piece of technology the person needs. If they prove they’re not economically stable to do so, VESID would then review the applicant’s financial situation. If they are on public assistance, VESID would pay for everything, if they have a couple thousand dollars, they would be expected to pay that and VESID would pick up the remaining costs.
“Usually it feels a lot easier getting the equipment initially and it feels like it’s a lot more work and requires a lot more patience to get an upgrade. You always need an upgrade,” Poulin said.
Scheefer, who is also one of Poulin’s coworkers at NCCI, knows all about the headaches of getting repairs and replacements for her wheelchair.
“‘Prior authorization’ is the key word,” Scheefer said. “If you’re taking too much medication, [insurances] want prior authorization as to why that is, you need to justify it, and the same thing with medical equipment. It’s craziness.”
For example, Scheefer’s most recent issue was a stuck caster on the front of her wheelchair, which forced her to do wheelies to be able to move around. The paperwork and phone calls to get the replacement caster lasted several months, after which Scheefer’s fiancée ended up buying her a $400 chair online to last her until she got what she needed.
North Country Kids is an “Early Intervention and Preschool agency,” according to their website, www.nckidsinc.com. “We offer the earliest possible intervention and support for infants, toddlers and preschool children (birth to five years of age) who have difficulties in the areas of speech, cognitive, behavior, social emotional or gross and fine motor development.”
Kelly McCauley, a pathologist at North Country Kids, described one of the pieces of equipment they use to develop social skills, called a Dynavox: “It’s like a computer program. If you touch three pictures in a row it will sequence them and repeat the whole sentence. If you push on the button for kitchen, that will open up to a screen that has 10 other buttons. You could push on social things during mealtime where another page would open up to a bunch of fruit if you wanted to request a fruit.”
This piece of technology is usually around $5,000 and a written justification for the family of the child to purchase it is required.
“Basically you get a trial device for a month after a big justification of why the child needs the device,” McCauley said. “After the trial is over, then you have to write another report justifying why the family would need to purchase the device. At $5,000 you really need to justify it as something they really need.”
Transitions such as Scheefer’s from abled to “differently-abled”, at any age, presents one important question: Who can I turn to for help?
“Connect with other people who have disabilities,” said Scheefer. “Go online and visit organizations that support or provide services or do research on the disability that you have. It’s all part of defining who you are and if you deny that you have anything going on with you or if you close yourself off, it’s going to be hard to tell people what you need and to get what you need.”