The following is excerpted from the article "A Light Through The Fog," Stroke Connection Magazine, May/June 2009.

When Tim Giles left the hospital in 2007 after two strokes and a heart attack, he couldn’t walk, talk or swallow and, at age 46, had to move back in with his parents, both in their 70s. A self-employed single father, Tim was uninsured, and his nine days in the hospital left him with $55,000 in medical bills. His mother, Betty Giles, remembers how the family felt: devastated.

Kay Anderson, age 51, had similar feelings when a local rehab hospital sent her husband Mark Sullivan home after his 180 days of insurance coverage had run out. Mark, also 51, required a trach and a feeding tube with special formula; he was released with $600 worth of prescriptions to be filled. Though he couldn’t walk, his stroke left him with a lack of awareness of this limitation, and he kept falling when he would get out of bed. His release form listed 50 items of concern.

Kay, who lives in Piedmont, S.C., works full time as a county appraiser. She had to hire her mother to take care of Mark during the day after three home health agencies refused to accept him because he needed skilled nursing care. “I worked all day and then came home and took the night shift,” she said. “If he didn’t sleep, I didn’t sleep. I wasn’t eating or drinking, and I lost 55 lbs. The same thing happened with my mother; I just watched her shrink. At the hospital he had had 24-hour care, but when he came home, it was just us.” A social worker who visited said Kay was suicidal. “The truth is I had thought of that because I knew without me, the hospital would have to take him. I felt like I was in quicksand.”

Hospital liaisons
The Giles and Anderson families’ stories are not unique. Stroke and other diseases leave countless families to negotiate a healthcare system that is neither friendly nor rational at a time when their lives have been turned upside down and their finances devastated.

In something of an acknowledgement of how complicated American healthcare has become, hospitals and insurance companies have created positions designed to help patients and their families. These positions may be labeled “patient advocate,” “customer advocate,” “patient representative” or “patient liaison.” The Center for Medicare and Medicaid Services requires every hospital, care facility and home health agency that gets federal money to have a process and a person to handle complaints, and they are required to follow up. This is the person to call when there is a question about medical records, personnel concerns or the loss of personal belongings. Typically, they are trained by the health system and are well connected to different departments throughout the organization. Although these people work for the healthcare organization, their job is to help the patient at no charge.

Another avenue
As helpful as these patient liaisons can be, sometimes there are situations like Tim Giles’ or Kay Anderson’s that are more complicated and require solutions that are outside a hospital liaison’s ability or scope of work. And obviously there are situations where the care facility’s final response to the patient’s family is unsatisfactory or even wrong.

For instance, in Tim’s case, he was screened by the hospital for Medicaid and told he was not eligible, though the hospital did give his mother a Medicaid application. (Medicaid is a federally funded, state-operated health insurance program for low-income families and individuals.) Of course, filling out complex forms was not first on Betty Giles’ priority list with an incapacitated son and 12-year-old grandson moving in. She received no training in his care, which included a feeding tube and suctioning his saliva. At the time, Tim could neither talk nor walk.

A friend’s visit to a medical equipment company to pick up a suction device proved fateful. Across the street were the offices of the Patient Advocate Foundation (PAF)*, which is headquartered in Tim’s hometown of Newport News, Va. The friend told them of Tim’s predicament, and they contacted him by phone and opened a case file on him. As it turned out, his case manager, Margie Griffin, was a member of his parents’ church.

In her estimation, Tim was eligible for Medicaid, and she worked with Betty to understand and complete both Social Security Disability (SSDI) and Medicaid applications. Because there is a six-month waiting period for SSDI and a three-month recheck by Medicaid for stroke patients, she understood the importance of getting the paperwork started as soon as possible. Margie then contacted all of Tim’s doctors and made interim payment arrangements on the family’s behalf until his Medicaid application was approved. She also provided the doctors with Medicaid and Social Security contact information for medical record requests to expedite the Medicaid and SSDI application process. Then she followed up with them to make sure all records had been sent to the state Medicaid and disability offices. She also contacted the state’s disability determination offices to ensure they had received all the records they needed, and re-contacted doctors where notes were still pending. The result was a timely review and approval of Tim’s applications for both Medicaid and SSDI. Margie then notified all the doctors and pharmacy and instructed them to bill Medicaid.

Another story
At the end of her rope, Kay Anderson also found PAF. “People kept telling me God wouldn’t put more on me than I could handle, and after Thanksgiving last year, I told God, ‘I can’t keep going,’” Kay said. “That night I found PAF on the Internet. Gayle Patrick e-mailed me the next day and became our case manager.”

Kay had been told that she made too much money to qualify for Medicaid, but she certainly didn’t make enough to pay for the care and drugs Mark required. Gayle called her the following day and began the process of finding long-term, skilled nursing care through the Medicaid system. There are only 44 such beds in South Carolina’s Medicaid system, which means a two-year wait. However, one of Kay’s friends found out that one of these beds would be opening up and contacted Kay, who called PAF. They succeeded in securing the bed for Mark the week before Christmas last year. Gayle assured her there were many programs that they would eventually qualify for.

Once Mark was safe, PAF began working on debt relief for Kay and negotiating with her employer over all the time she’d taken off. Kay has two mortgages to pay and four credit cards that are maxed out from paying for medications. Gayle contacted all of these creditors and negotiated payment modifications and relief. “Gayle treated this case like it was her own family,” Kay said. “She calmed my fears about the misinformation I’d gotten. She kept me updated on what was going on and what was coming up. PAF worked like I was paying them.”

And that’s where the really good news comes – PAF does not charge patients or their families for any services.

How things have worked out
Tim Giles has returned to his home with his son, but he is a long way from recovered. He still cannot work and lives on SSDI. He can’t afford therapy and his meds alone are $200 a month. “Mainly I just take care of my son,” he said. “That’s a full-time job in my condition. When I was in the hospital, I thought I’d be up and about in a couple of weeks. Nobody told me what to expect. It’s been 16 months, and I’m a long way from where I was.” Still, he knows it could be so much worse, with $55,000 of medical debt, no job, no SSDI and no Medicaid.

For Kay and Mark, life remains difficult. He is still a long way from coming home to live. He still has a trach and a feeding tube and can only walk with a walker. Even so, “there is freedom in knowing that he is being well taken care of,” she said. “Those six weeks he was home, it was like being in prison – that walls-closing-in-on-you feeling. I was always afraid that I would do something wrong and he would die. Having him where he needs to be gives me peace of mind. I can sleep now and spend time with my grandkids, which is important to me. Now it’s a pleasure to go to work knowing that I don’t have to go to work again when I come home.”

Reinventing Health Care

Eighty million Americans suffer from cardiovascular diseases, including stroke, and too many of them cannot afford the health care they need. Lack of health insurance and barriers to accessing quality care pose tremendous problems for patients who have difficulty affording essential treatments. Insurance policies with high premiums and practices that penalize those with preexisting conditions create a challenging and expensive reality for heart disease and stroke survivors. That is why the American Heart Association is working to achieve a meaningful reform that serves the best interests of patients. 

No family should ever have to choose between an empty pantry and an empty medicine cabinet. Yet, this is a reality for many people with heart disease and stroke. Join the American Heart Association in calling on lawmakers to achieve meaningful healthcare reform. Become a You’re the Cure advocate for affordable, accessible, quality health care today.

*This link is provided for convenience only, and is not an endorsement or assurance of the entity or any product or service.