Troy’s Journey: From Surviving to Thriving

Photo of Colleen and Troy Gagliardiby Amber Carlton

 

Troy is an energetic, outgoing 12-year-old boy with a mischievous smile, a quick wit, a big heart, and a love for snowboarding. Looking at him today, it’s hard to believe that it’s something of a miracle that he’s alive. His mother’s uterus ruptured while she was in labor and he was without oxygen for over 20 minutes, resulting in several disabilities including a traumatic brain injury (TBI), a seizure disorder, Tourette Syndrome, and autism. But despite the odds, Troy not only survived, he has thrived!

Troy’s parents, Mike and Colleen Gagliardi, attribute much of Troy’s progress to a Medicaid waiver that allows them to act as paid caregivers through The Independence Center. Colleen is now able to stay at home with Troy to provide him with the hours of therapy he requires each day. Mike, who has a full-time job in I.T., acts as her backup. Because they can devote much more time to their son, Colleen says that “Troy has come so far.”

The program, which pays the Gagliardis for the hours that go above and beyond their normal parenting responsibilities, has been a “godsend,” says Colleen. “The Independence Center has been great as a job. But I really do believe they care about us, and I know they care about Troy. We love the communication, the training, and the fact that they know us the way that they do. That really sets them apart.”

The couple encourages others who are caring for loved ones with disabilities to investigate the paid caregiver program. Mike adds, “Why would you not use everything that you can to take care of your loved one?”

For more information on becoming a paid caregiver, call 719-471-8181.

TBI Facts

According to the Centers for Disease Control (CDC), traumatic brain injuries (TBIs) are a “major cause of death and disability in the U.S.” Falls are the leading cause of TBIs; however, they can be caused by any blow or jolt to the head, or can be the result of a stroke, vascular malformations/anomalies, or neonatal/perinatal/developmental injuries. Those who survive a TBI may feel the effects for a few days or the rest of their lives, including difficulty with memory or thinking, vision, hearing, movement, and personality changes or depression.

What Is Tourette Syndrome?

Troy is one of thousands of school-age children in the U.S. living with Tourette Syndrome (TS). A condition of the nervous system, it causes “tics,” which present as repeated twitches, movements, or sounds that can’t be controlled. While there is no cure for TS, there are treatments that can help. Learn more at tourette.org.

What Are Electronic Glasses and How Do They Work?

by Gabe Taylor

 

There are two different types of electronic glasses that can be used to help people who are blind or have low vision to navigate the world around them. In the front cover article about The IC’s Benefits Coordinator, Daniel Ratcliff, these types of glasses can be used for individuals with low vision, such as macular degeneration, or in Daniel’s case, Stargardt’s disease. For Daniel, though he doesn’t have central vision, he does have his peripheral vision. This allows him to see the images being projected on the screens in front of his eyes, thus enhancing thru magnification, his eyesight. But what about people who are completely blind?

For individuals experiencing complete blindness, the inability to receive the necessary visual input, makes it impossible for eSight style glasses to work for their needs. Luckily, there is a whole different category of electronic glasses that were created to address this need.

In 2014, a company called Aira (Aira.io) was founded when an innovative entrepreneur became friends with a communications
professional who is blind. From the friendship, arose a revolutionary idea, to use Google Glass as a platform to help people who are blind. If you aren’t familiar with Google Glass, it’s basically a pair of non-prescription glasses with a built-in video camera to capture and record video of everything the wearer sees.

The way Aira works, is by relaying the live video feed being captured by the glasses, to a computer in another location. A person watches the video feed and explains to the wearer what they see. They can also see their location on a map from the GPS in the user’s phone. This provides a significant amount of information to the wearer to help them better perceive the world around them. Imagine being in a restaurant without a braille menu, trying to pick out what to eat. With Aira, the menu would be read to you, and you could easily make the decision on what to order. When standing at a street intersection, you could quickly learn what street you’re standing on and avoid going in the wrong direction.

Both varieties of electronic glasses truly are an amazing advancement for individuals who have low vision or are blind. If you or someone you know would like to learn more about electronic glasses or other adaptive technologies, visit our “Tools for Accessibility” page at http://bit.ly/tools4accessibility.

Press Release: The IC Hiring Spouses as Caregivers Under New Colorado Law

Contact: Michelle West
(719) 476-3143
FOR IMMEDIATE RELEASE

COLORADO SPRINGS, CO, May 17, 2016 – A Colorado law passed in 2014 (HB 14-1358) received approval on January 22, 2016 from Centers for Medicare & Medicaid (CMS) on changes that now allow spouses to receive reimbursement for providing In Home Support Services (IHSS). Now The Independence Center, an IHSS agency, is hiring spouses as paid caregivers of people with disabilities who otherwise would require a nursing facility level of care.

Colorado has two programs for participant-directed home and community based services (HCBS). HCBS waivers are Medicaid waivers that help people with disabilities of all ages remain independent within their own homes instead of a nursing home. Consumer Directed Attendant Support Services (CDASS) participants employ their own attendants, whereas In-Home Support Services (IHSS) participants use attendants that are employed by an IHSS agency, such as The Independence Center.

Previously, spouses could only be a paid caregiver under the CDASS program. While the CDASS program did pay spouses, it left the coordination up to the consumer and did not provide benefits. Now, spouses can be hired by an IHSS agency to provide all or part of the care.

“We have had people waiting up to two years to be able to become paid caregivers for their spouses. Under CDASS, spouses have always been able to be paid to provide that care. It was unfair that spouses couldn’t do the same thing under IHSS,” said Katey Castilla, director of The Independence Center home health department. “We’re absolutely thrilled that spouses can now be paid as employees and receive all the benefits of employment under IHSS for the care they provide.”

As soon as the CMS approval to Colorado law was processed, The Independence Center hired Kim Molinar as a caregiver for her husband Ralph. She had recently brought him home after an undiagnosed stroke left him quadriplegic. He requires round the clock care.

Molinar readily admits that without the Medicaid financial reimbursement she would still choose to care for Ralph, but that the provisions have made their lives much more financially comfortable. “It’s very rewarding to have your loved one at home. To see him at home, to be able to look over and know that he’s okay at any given time. It’s comforting. It’s a lot of work, though. It’s hard work.”

It was through her connection to The Independence Center that she learned she could now qualify to become a paid caregiver for her husband. “Once we got him home and we had the connection with The Independence Center all the time, The Independence Center notified me when changes to the law went into effect and we were able to start the paperwork immediately,” said Molinar.

As an employee of the IHSS agency, spousal caregivers can receive all the perks and benefits of being an employee. This means a person employed by an agency who is caring for their spouse can receive health and dental insurance, 401(k), and paid time off as offered by the particular employer. In addition to employment benefits for the caregiver spouse, an IHSS agency provides budget oversight and payroll management.

Patricia Yeager, CEO of The Independence Center said, “We are delighted to be able to support persons with disabilities and their spouses in a way that provides some measure of financial security during a very stressful time. In a time where we talk about increasing the quality of life for people with disabilities, this is one very tangible way of doing so.”