A Caretaker’s Perspective On The Importance Of ICS

For more than two decades, Independence Care System (ICS) has supported the lives of people with disabilities, focusing on the health, mobility and independence of members to ensure they remain active and independent in their communities. By collaborating with service providers and advocates who work on members’ behalf, and connecting with members to gain a deep understanding of their needs and values, ICS has touched the lives of countless members, along with their families, caregivers and loved ones.

George Tower can attest to ICS’ unmatched commitment to its members, and how the organization goes the distance to ensure people with disabilities receive the highest quality care and support so their lives are transformed for the better. George’s late mother, Athena Theodoracopoulos, became an ICS member around 2010, and suffered from a host of medical issues, both physical and cognitive. At every turn, good and bad, ICS was with George and his mother every step of the way, ensuring she had the care and support she needed to live independently.

During 2010, Athena, then 88 years old, had a home attendant through Medicaid for five days a week, eight hours a day. With George working full time, he could not be home during the day. With more and more challenges arising, including her diagnosis of Alzheimer’s Disease, George needed greater care and support for his mother, and began extensively researching options. That’s when he discovered ICS.

“I had a hard time with anyone getting back to me,” George said. “I didn’t want her in a nursing home. I contacted ICS Senior Vice President of Communications and Marketing Loreen Loonie and she visited our home to speak with me and my mom. The talk exceeded my expectations.”

Not long after, Athena became an ICS member. George noted that the case with his mother was complex, split between two home health aid agencies. That introduced challenges for ICS, especially because she needed seamless coverage. ICS, according to George, took the high road.

“They stepped up to the plate and created a way,” George said. “That spoke to the ethos, heart and core of ICS. It was never ‘We can’t’ and that made all the difference. It was always a glass half full.”

Quality care for years

As time went on, Athena faced additional challenges and, with ICS’ support, he and his mom navigated those difficult times. George experienced his own health hardships in 2014, and his ailments prevented him from physically being able to support his mother the way he wanted. His mother went to 24-hour shifts of home attendant care, and as time went on, requirements and needs continued to increase. A fall in 2015 resulted in the loss of use of Athena’s right arm. Athena also needed to use a wheelchair beginning in 2018, and was bedridden after aortic bypass surgery due to lost circulation to her legs. She also faced spinal complications, was hearing impaired and suffered from depression.

“We had multiple crises throughout the years, plus issues with aides, and home care agencies,” George said. “But when the chips are down, that’s when you can determine real value. ICS’ actions spoke as loud as their words.”

ICS Transitions From MLTC To Health Home

Following ICS’ closure as a Managed Long Term Care (MLTC) Program and its shift to a Health Home, George expressed disappointment and anger in the shift, and was shocked to learn that an organization like ICS that was successfully serving an underserved, often overlooked population would be forced to make drastic changes that directly impacted and compromised people with disabilities. With members having to move to other care plans and fight for equipment and services, George found himself wrapped in a whirlwind of emotions.

“When you have an attitude of the sky is the limit, which ICS does, it’s conducive, vital and sets the stage for success,” George said. “When the rug was pulled out from under them, and they didn’t get funding, this was a stab in the heart. It was reprehensible. Many were fearful and panicked. People were and still are suffering in silence.”

George’s experience with other companies, he said, was that they were coming at things from a transactional point of view. Essentially, he said, filling beds with people, without compassion. ICS, he said, had always followed through on heart-centered care.

“They understand their clients,” he said. “ICS has been able to do its best with one hand tied behind its back, due to a lack of funding from the state and poor communication on the part of Visiting Nurse Service of New York (VNSNY). ICS was the last line of safety. They were the only thing that kept me from losing my mind for the many years mom required care to stay out of a nursing home.”

ICS worked to secure crucial supplies for his mother, including an electric hospital bed, special reclining wheelchair, and other quality of life items that had been denied and had to be appealed.

“People did not want to pay for these items,” he said.

The coronavirus pandemic

Then the coronavirus pandemic struck, and George became greatly concerned. With many unknowns and a highly contagious virus causing many to become ill, experience severe symptoms or die, George put his full faith in ICS to help care for his mother. His mother still experienced hospitalizations, and at times George found himself with his mother in emergency rooms for 24-36 hours.

“When the pandemic hit, so many questions arose. What do we do if she gets COVID or I get COVID?” George said. “By this time, she was on a feeding tube. She was on many medications. How can I feed her and take care of her. ICS worked with us.”

During one point of the pandemic, one ICS caseworker sent several N95 masks to George at a time when masks were unavailable for the majority of the public.

“Compassion is something you have as an organic wealth spring,” he said. “The compassion of their staff shone through time and time again.”

Reflecting on ICS and life

In the final months of Athena’s life, George said that his mother was receiving hospice at home. Another organization that she was serviced by, in addition to ICS, declared that they had exhausted all options for Athena, and would not service her case anymore. ICS, he said, once again stepped in and showcased their unmatched care.

“They said, ‘We’re not going to do this, a total change of aides in the middle of a pandemic’,” he said. “My mother was going to die in a few months. ICS stood their ground and made sure that the services my mother needed, she received.”

After Athena died, George reached out to former ICS president Rick Surpin and Loreen, expressing his gratitude for their partnership, kindness and respect—all of which empowered him as a caregiver to support himself and his mother.

“I told them, when you put your head on the pillow to sleep at night, you know you’ve done the noble thing,” he said. “To alleviate the suffering of another—what higher calling is there?”

George’s concern today is what other families in similar situations will do to support their loved ones. With less state funding coming in for people who need it most, there is a larger discussion across the state about what people with disabilities will do to secure the services they need and how they will be able to survive and be independent.

“What worries and saddens me is what do people do who don’t have a George or a loved one?” he said. “The letters, faxes, calls and meetings between myself, ICS, VNS and other agencies over the years, that’s a full-time job. Who is there to do this for them? This is a great teaching opportunity for other organizations to sit down with ICS and to learn what works.”  

Asked what he would say to someone considering enrolling as a member at ICS, George said, “to navigate the labyrinth of corporate red tape and bureaucracy, of VNS or any other MLTC alone without the expertise of ICS staff, would be a mistake.”

“ICS can act as intermediary and mediator when necessary—why would you not want that?” George said. “I’m so thankful that my mother and I were put in the path of angels with combat boots. ICS excels at making the impossible, possible. And know that if ICS cannot get it done, it’s because it really cannot be done.”

Christopher Engelhardt

Christopher Engelhardt

Communications Specialist

About The Independent

The Independent is ICS’ official newsletter, featuring the latest stories around ICS, its members and staff, as well as news on what’s happening in the disability community at large.

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