A national organization that advocates for and serves people with intellectual and developmental disabilities is calling on the U.S. Congress to expand paid family leave to include siblings of those with disabilities.
Proposed changes to federal family and medical leave policies have stalled, leaving some family members wondering how they will care for members of their family who cannot care for themselves without assistance.
Drake Rasmussen is program coordinator of the Utah State University Developmental Skills Laboratory in Logan.
"We serve both the adult population and younger kids," Rasmussen says.
Rasmussen and his co-workers provide intellectual and developmentaly disabeled clients with opportunities to spend time in the community, learn job and self care skills, and make it possible for caregivers to attend to their jobs and other family obligations.
"We have several individuals whose parents are having a harder time being the primary care taker," he said. "That care responsibility is eventually going to have to fall on to somebody else."
Rasmussen says siblings are most often asked to take on the care of aging disabled family members but find themselves without the same support systems offered to parents.
"Some of the most heartbreaking stories we hear are the one's when folks end up quitting their jobs or losing their jobs because they need to take time off to provide care for someone with a disability," according to Bethany Lilly.
Lilly is director of income policy with The Arc of the United States. The Arc has a network of over 600 chapters across the country, including in Utah. Lilly says the organization is working to promote and protect the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes. The Arc reports that 80% of people with I/DD live with a caregiver who is a family member and that siblings are increasingly taking on the role of primary caregiver.
"They could possibly qualify for funding to live in a group home with other individuals," Rasmussen said. "There are about 3,000 individuals on the waiting list for the funding."
The Arc is calling on federal lawmakers to pass inclusive paid family and medical leave legislation that recognizes the important role of all family caregivers. Lilly says without paid leave, families face a cruel choice: the health and well-being of a loved one with a disability or working to make ends meet.
"You know, we are really leaving a lot of people out with FMLA. There is a lot of interest in a new paid leave act so families can afford to take it, but also make sure the definition of family members is a lot border," Lilly said.
Lilly has spent the month of November pushing a capital hill campaign to educate U.S. Congress members about the caregiver crisis facing people with intellectual and developmental disabilities and their families, who they say often experience greater financial insecurity and are more likely to face barriers to employment, making the impact of unpaid time off particularly devastating.