SALT LAKE CITY — Kira Volar has devoted her every waking hour for the past six years to caring for her younger sister Tara, who is paralyzed and also has an intellectual disability.
In the morning, Volar uses a lift to move Tara, 44, from her bed to her chair. She changes her diaper and makes sure it fits comfortably. She checks that her shirt is not bunched up in the back of her chair. Volar drives 22 miles each way to drop Tara off at a day program in Woodland, California, and when Tara gets home the pair watch "Mary Poppins" up to three times.
“She’s a super-great sister and there’s a lot of stuff that’s really great, but it’s hard to have a life of my own,” Volar said.
The 47-year-old is a full-time caretaker to her sister in their Sacramento, California home. While Volar was always Tara's "protector" and caretaker throughout their childhood, it wasn't until six years ago that Volar decided to make it a full-time job. According to Volar, Tara was paralyzed over 20 years ago while living unsupervised in a group home in Sacramento, and after a few moves and sub-par care in a different home in Marysville, Volar decided she couldn't take it anymore and left her job with Marriott International as a reservationist.
"I just can’t watch her in the system like that," she said. "I don’t know what the future holds. I’m getting older. The system is really stacked against her."
After parents, siblings are most often responsible to provide care for someone with a disability. And the number of sibling caretakers is potentially large: One-fifth of Americans have a disability and 14 million of them cannot live independently. While no one knows for sure how many people with a disability have at least one sibling, Pew Research Center says the average family has 2.4 children. When parents grow old and are unable to provide care, the job often passes to their other children.
Yet, many of those brother or sisters are not sure they are ready to be caretakers of their siblings. A 2015 study by Easter Seals found that 70 percent of potential caregivers "admit to having concerns about taking on a caregiving role," and 37 percent admit to not being ready for a caregiving role, especially women.
To ease worries and provide the best care, it's all about planning, says Don Meyer, director of the national program Sibling Support Project. He recognizes that parents may wish their children to stay involved in their siblings' lives, but there are a range of ways to stay involved.
Nor is caregiving for everyone. “I am also forever begging parents to give siblings the permission to live the life of their own," he said.
Growing up a sibling
For siblings of someone with a disability, there are ups and downs. Studies have shown that those siblings are more mature, are kinder and have a greater tolerance for diversity. But they also feel neglected by parents who are busy with the child with special needs. They can have problems with relationships, trouble functioning at school and often struggle with negative behavior and unhappiness.
"There's resentment, like the world revolves around this one kid," Meyer said. Though he recognizes the difficulties that siblings of those with disabilities have, there are “as many opportunities as … concerns.”
Dr. Brian Skotko, co-director of the Down Syndrome Program at Massachusetts General Hospital, has a sister with Down Syndrome and sees that advantage: his studiesshow that 79 percent of people are more positive and 88 percent are distinctly better people because of their siblings who have a disability.
Lacie Hinton, 13, from Lehi, Utah, is the youngest of five children and she has three brothers with various degrees of disability.
Lacie's mother, Deana Hinton, hopes her eldest son, who will not be able to live on his own, will be put into assisted living if anything should happen to her or if his aunts and uncles can't take care of him. Yet, Lacie said she would take care of any of her brothers with a disability in a heartbeat if necessary. "They're my siblings, so yeah."
Hinton is rare among families with disabled children. Up to 74 percent of potential caregivers admit they have not made a plan for the future when it comes to medical and financial planning for the person they will be caring for, according to Easter Seals.
Among those working through the financial end of caregiving is Paul Blobaum, a 59-year old from Park Forest, Illinois, who has a younger brother, Norman, with an intellectual disability.
"It was really a shock to me that I had to be the one to figure this out," he said.
Blobaum cannot be a full-time caregiver because of his job. He lives 100 miles away from his brother, who resides in their late parents' retirement home. Despite the distance, Blobaum stays involved and considers himself responsible for his brother.
"For us brothers, it was 'til death do you part, and more intimate than marriage. We were raised to look out for each other. There was no other possibility for me, it wasn’t even a consideration to not become involved and a caregiver. Sadly, there are so many siblings that don't become caregivers."
Blobaum is a librarian at Governors State University of Illinois and just got a promotion. Still, he worries constantly about financing. With so much responsibility, not working isn’t an option, he said.
Some caregivers qualify for help from publicly funded programs. For example, the Hinton kids can be paid for hanging out with their brothers through a program that funds respite services, which are designed to give families a break. It’s limited and temporary, but relieves some of the financial burden.
Volar benefited from the respite program, too, but has run out of the hours for which she can be paid. And when Tara was bedridden for nine months because of health problems, Volar didn't receive any pay for the extra hours she had to devote to her sister.
"They assume a certain amount of hours will be covered for free by the family member," Volar said. And there are always other expenses the sibling bears, like the 22 miles each way Volar has to drive four times a day so Tara can participate in the day program.
In addition to respite pay, there are other options that families can consider for financial help. Medicare and food stamps are the biggest ones. But those systems are hard to navigate, some have waiting periods and many siblings feel lost.
Blobaum has waded through the financial options and found no single, simple solution for families that bring different resources and challenges of their own with them.
“I understand the difficult decisions," he said. "There is not enough wisdom in the world to know you are making the right choice."
Which plan is the right plan?
As a physician, Skotko has seen parents of children with disabilities hesitate to make a caregiving plan because they don't have all the details yet.
"Your family neither expects nor anticipates all the details. Have a plan, even a plan with holes in it and involve the person with a disability,” he said.
His sister’s Down syndrome has shaped his own life and choices to some degree, including who he chose as a spouse. If necessary, his sister would come live with the couple.
"Encourage conversation so that it does not occur in times of crisis. There are resources out there; I encourage families to reach out and research for help," he said.
Most of all, Volar said the sibling who might be tasked with caregiving has to know what he or she is ready for, rather than feeling an obligation that might not be realistically possible.
"It is so hard. Make sure that you have the gumption, the mental ability to do it. I doubt myself some days," Volar said. "If you can’t do it, be honest. You’ll be hurting yourself and your sibling. If you can do it, do it and do it right. Some people are caregivers, some people are rocket scientists, and that's not a judgment."
Correction: A previous version stated Norman Blobaum lives in a group home. He lives in his late parents' retirement home.