Growing up, Delilah Picart was always "the second mom" to her brother, Eric. Two years younger than her, he was born with Fragile X syndrome, a genetic condition that results in intellectual disability.
Now 30, he lives in New York City with their 71-year-old mother, while Ms. Picart, an actress, author and advocate, lives in Shadyside with her partner, her 7-year-old daughter and her two stepchildren.
The geographic separation -- as well as her father's death two years ago -- has left Ms. Picart concerned about what will happen when her mother can no longer care for her brother.
"My biggest worry is where is my brother going to live when my mother passes away?" she said.
And not only that, but will she be able to secure for him the same level of care here as in New York, and also be able to juggle her career and her other family relationships?
This morning, she was not alone with her concerns.
Ms. Picart was one of about 65 people at the Wyndham Grand Pittsburgh, Downtown, for a daylong conference of the Sibling Leadership Network, a national nonprofit organization headquartered in Chicago. It was founded in 2007 as a way to bring together siblings of people who have intellectual and developmental disabilities.
"There's so much focus on people with disabilities and parents in terms of providing information and services and support, and we realized that often siblings were being overlooked," said Katie Arnold, the network's executive director.
The organization, with 13 state chapters, including a Pennsylvania chapter based in Philadelphia, has focused on providing support systems for siblings to share stories and struggles and has advocated for research, policy and services related to sibling interests. A current policy focus is to expand the Family and Medical Leave Act, which permits workers to take unpaid, job-protected leave to care for family members, to include siblings.
Today, though, was a chance for siblings from across the country to meet other people who may be experiencing similar challenges in caring or preparing to care for a sibling with a disability. The conference, held alongside the American Association on Intellectual and Developmental Disabilities Conference also at the Wyndham, began this morning with speakers sharing stories about life with their siblings and then asking conference participants to share their own.
If people caring for their young children and their aging parents at the same time are termed the "sandwich generation," people with siblings with disabilities have even more on their plate, Ms. Picart said.
"We are the club sandwich generation," she said.
Knowing she was not alone, and speaking with other siblings who are also caregivers, was a "key" part of the conference, Ms. Picart said. Like her, she said, many of them have a take-charge personality but are also compassionate and patient. And, like her, the other siblings have experienced a different type of sibling relationship than is typical.
"I take it on because I love my brother and I understand him in a way that only siblings understand," she said.