Cathyleen Williams, of Barstow, Ca, holds a doll that holds the ashes of her son, Caleb Lucas. Caleb died in March of this year after a 9 1/2 year battle with a congenital heart defect. After spending a decade as Caleb’s caregiver, Cathyleen is now scrambling for a job since a loophole in state law means that in-home caregiver parents cannot collect unemployment after their child dies, which isn’t true for other relatives.
Help may be on the way for mothers such as Cathyleen Williams, although it’ll arrive too late to help her.
Barstow resident Williams spent nine and a half years caring for her son, Caleb Lucas. He was born withhypoplastic left heart syndrome, with half of his heart doing all the work.
Caleb’s heart pumped well enough to give him between 70 or 80 percent of the oxygen levels in normal blood. His poor circulation left him with bluish lips, cold skin and skeletal limbs. Caleb also suffered from heart attacks and strokes, leaving him with the mental ability of a 2-year-old.
His weak immune system left him and Williams trapped at home, and he had to attend class at a school less than a tenth of a mile away via Skype.
During Caleb’s short life, he underwent 50 surgeries, including 10 open-heart surgeries, had a rebuilt aorta and stent inserted and a pacemaker installed earlier this year. Caleb’s health was never bad enough for him to qualify for the heart transplant list, given the small number of transplants available for children each year.
And throughout his struggle, Williams worked as an In-Home Supportive Services caregiver, her previous careers as a preschool teacher and civilian employee at nearby Ft. Irwin forgotten.
But when Caleb died from influenza on March 18, there was a second blow for Williams: Due to a loophole in state law, she cannot collect unemployment for being an In-Home Supportive Services worker because the person she was taking care of was her child, rather than another relative or someone unrelated.
The loophole also applies to those taking care of their spouses.
She also lost the Social Security Disability payments she was receiving on his behalf from the federal government and the child support payments from her ex-husband, leaving her worried about the prospect of losing her house. (Williams is accepting donations via a crowdfunding site while she looks for new full-time work.)
But help may be on the way for those in Williams situation: Assembly Bill 1930, introduced in February by Assemblyman Tom Lackey, R-Palmdale, would create an In-Home Supportive Services Family Caregiver Benefits Advisory Committee to look at the situation of caregivers like her and create a report by Jan. 1, 2018.
The report would include “recommendations on steps the state can take to ensure that all IHSS providers who provide supportive services to a spouse or child have access to employment-based supports and protections, including, but not limited to, federal Social Security benefits and state unemployment insurance benefits,” the bill reads.
The bill was approved by the Assembly on June 1 and the state Senate on Aug. 16. On Tuesday, the rewritten version approved by the Senate was passed by the Assembly,
“I’m just so happy,” Williams said Tuesday. “It’s just one step closer to making sure no other parent or spouse will ever go through what I have.”
She’s now hoping to meet Gov. Jerry Brown and urge him to sign the bill. His deadline to do so is Sep. 30.
“If I could meet and talk with him I would just explain to him how important this change is and how hard it was for me and please to not allow that to happen again,” she said.