Lobbying for loved ones

It could be a child, a spouse, a parent, a best friend — someone you love has complex health and medical needs, and it falls to you to see that they get the care they need. 

 Support organizations, which provide a strong voice often heard by lawmakers, offer advice on how to be an effective health care advocate. But the work — and it is work — still falls primarily on those at home.

Sharon Bristow had enough to worry about in trying to keep her family functioning after her husband, Richard, suffered a severe head injury in a car wreck almost seven years ago.

She did not count on having to expend so much time and energy on calls to insurance companies, hospitals and nursing homes over bills and care.

"He was thrown 100 feet in the air," said Bristow, of Tappahannock. "It's a miracle he survived at all."

He did pull through, and during the next several years was in and out of hospitals and nursing homes, not always with good outcomes.

"They can save people with these brain injuries," she said. "Then they don't know what to do with them once they save them. … They end up in these nursing homes," which are not always equipped to care for younger people with brain injuries.

"I have been very humbled," she said. "I had so many doors closed in my face. My spiritual relationship has increased. I learned that I'm tougher than I thought I was."

Bristow and other people caring for loved ones with serious medical issues say they have no choice but to do what they do, and in their stories are lessons for others who suddenly find themselves thrust into the position of caregiver/advocate and don't know where to turn.

"If we're put in this position — whatever position you're put in, whether it be cancer survivor or people with brain injury or whatever — it's your responsibility to work for that cause and do what you can to help," Bristow said.

Among the dozens of lobbyists jostling for face time with Virginia legislators as they consider new laws and the state budget will be people such as Bristow, who have suffered personal tragedies that make them ideal advocates for causes.

With health legislation, the issues often are a matter of life and death, and sharing a personal story that explains the impact of laws and funding decisions may sway votes.

The Brain Injury Association of Virginia will bring supporters to the Virginia General Assembly for a lobbying day Wednesday. Bristow will take the day off from her job as a computer systems analyst for the U.S. Navy in Dahlgren to be there.

She learned about the group about six months after her husband was injured.

"The Brain Injury Association made connections and had him evaluated," said Bristow, who serves on the association's board of directors.

One of the bills Bristow hopes to see enacted focuses on nursing home policies, specifically, on keeping beds available for residents who temporarily are transferred to a hospital. Bristow said her husband has been refused readmission after a hospital stay. At times, his behavior can be aggressive, a result of his injury. One facility handcuffed him to his bed and threatened him with arrest.

Thankfully, "No judge would sign off on a warrant," Bristow said. But there was little she could do about the nursing facility refusing to take him back.

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Among the papers Shareen Young-Chavez has in the files she keeps on the care and services provided to her son Stefon, 17, is a 2004 letter from a state advocacy agency.

The letter informed her she had won her case against a day support program Stefon attended. Stefon has Angelman syndrome, a genetic disorder that causes developmental delays. Those with it need lifelong care.

At the facility, "He was allowed to fall down cement stairs on his head while strapped in a wheelchair," Young-Chavez said.

He received emergency medical care, and escaped broken bones, but his mother wanted to know what happened and why.

"I went to lawyer A through Z. I was incensed," she said, when she could not find anyone to take her case.

"Thank God for the Virginia Office for Protection and Advocacy," she said. The independent state agency was created in 1977 and "through zealous and effective advocacy and legal representation" assists people with disabilities.

They helped her get answers.

"We won," Young-Chavez said. "Not for money. But for changes in policies and procedures. That was monumental."

That was just one of the many battles she has fought through the years as an advocate for her son. She was 20 when he was born. The pregnancy was full term, and Stefon, delivered by cesarean, appeared healthy.

At one of his developmental tests during that first year, he failed. He could not track things with his eyes. He could not sit up. She grieved, but then quickly learned she had to get herself together for her son's sake.

"I had to overcome a lot of obstacles, as far as perceptions," she said, recalling those early days. "Here was this young, unwed mother with a child with special needs. I was basically being told limited information, but not what I felt I needed to be told to provide proper care for him," Young-Chavez said.

"He has been hospitalized and on life support numerous times," she said. "I have been asked, 'Do you want to pull the plug?' "

She started educating herself, reaching out to groups such as The ARC of Virginia, getting in people's faces.

"The squeaky wheel gets the oil," said Young-Chavez, who has made many trips to the Virginia General Assembly to speak for more state funding for community-based care for children like her son.

Her advocacy turned into a vocation where she helps others. She has worked for Medicaid, and for the past 41/2 years has been a quality assurance specialist at a Social Security Administration office in the Richmond area. In addition, through her work with The ARC of Virginia, she is helping start The ARC South of the James for families in the Tri-Cities area.

"Growing up and going through this process with my son, I know what I was lacking — support, comfort, knowledge, information; if it's someone holding your hand, then so be it."

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Bill Bailey and his wife, Kitty Kennedy, of Bon Air, were in Chicago to attend a national Alzheimer's Association conference several years ago when they made a side trip to a Social Security Administration meeting also being held there.

The Social Security meeting was to take testimony on classifying more diseases as "compassionate allowance" conditions that are fast-tracked for approval for benefits.

Bailey, 61, was 58 when he was diagnosed with early-onset or younger-onset Alzheimer's. The Alzheimer's Association had been working for years to get the condition classified so people in that situation would be able to get benefits quicker.

Bailey hadn't prepared anything to say that day. But when the floor was open to comments, he stood up and talked.

Two weeks later, Kennedy said, 14 months after his initial application, he got a letter approving him for benefits. The couple learned months later that their words helped make a difference. In March, 38 conditions were added to a list of 50 compassionate-allowance conditions — among them was early-onset Alzheimer's.

"The idea that a grass-roots campaign or words could make a difference, that was pretty amazing," Kennedy said.

Bailey's disease progressed to the point where he needed more care than Kennedy could provide. He lives in an assisted-living facility.

"He is well. He was home for quite some time after the diagnosis. It was time for him to transition. I made the transition from caregiver to care manager. It was hard for me to understand when it was time. I was trying to work. I was trying to provide care. There were not enough hours in the day," she said.

Their work with Alzheimer's Association continues.

"We realized there was something we could do. We could make a difference in making people aware. We cannot find a cure. We cannot make a difference in what is going to happen, but we can make a difference in awareness," Kennedy said.

"We just decided we needed to find a voice. The Alzheimer's Association helped us find that voice."

* * * * *

Jennifer Melton's father, Stephen Salmon, died in December 2008, six months after being diagnosed with Stage 4 lung cancer. She wonders whether he might have lived longer had she and her family asked more questions.

"I've met people with Stage 4 lung cancer that had metastasized," Melton said. "They were living. They were surviving. It was because they did not take the death sentence as their prognosis. They educated themselves. They found out about clinical trials. They asked more questions."

Since their father's diagnosis, Melton and her sister, Stephanie Weis, have become advocates for lung cancer awareness and research. Salmon was 59 when he died.

"There are so many clinical trials people don't know about. I regret not knowing about that while Dad was alive. There are things they could use in conjunction with your typical treatment of radiation and chemotherapy," Melton said.

The sisters are working with the National Lung Cancer Partnership. They are giving the organization part of the proceeds from sales of a book they have written, "Pink Sky At Night," examining their family's journey as caregivers and advocates.

They attended an advocacy training summit in Tampa, Fla., in 2010 sponsored by the partnership.

"Just looking at the science behind the cancer, what they are studying on a cellular level was just unbelievable," she said. "That was so empowering."

The other project the sisters are working on with others is a 5-kilometer fun run/walk and memorial walk on March 12 to help raise money for the partnership.

"We just want people to know how deadly this form of cancer is," Melton said.

"You have to educate yourself to be the best advocate. Never stop asking questions."

tlsmith@timesdispatch.com

(804) 649-6572