Sam and Maya Simpson
Kathryn Simpson has been determined to keep her 24-year-old son Sam out of an institution since he was just 15 months old and suffered brain damage while undergoing surgery for a congenital medical condition.
For Sam to be able to live at home, Kathryn, a single parent and soon-to-be mother of two, would have to give up her nursing career — and a nurse’s salary.
She became a paid family caregiver instead.
Despite the low, $4 per hour pay rate, Kathryn, a persistent and tireless advocate for her son, felt fortunate: she had gotten Sam into California’s In-Home Supportive Services (IHSS) program — the first baby to become a client.
A Full Day of Care
Kathryn has been an independent home care provider through the consumer-directed care program at the San Francisco IHSS Public Authority ever since. She is paid to provide and coordinate care for Sam, who she describes as “severely disabled and medically unstable.” Kathryn plans to be her son’s caregiver forever because “he would never survive an institution.”
She says that she “accepts poverty-level wages to keep Sam at home. I live very frugally so I don’t need public assistance. I have health care coverage through IHSS and my share [of the premium] is nominal.”
Today, Kathryn works over 9 hours a day every day for $10 per hour, making sure that Sam’s personal care, medical, therapeutic, social, emotional, educational, and recreational needs are met.
By day, Kathryn provides Sam with his respiratory treatments, administers his medication regime, and takes him to therapy appointments — physical, speech and language, hydro, or music, depending on the day of the week. She is responsible for bathing and dressing Sam, preparing his meals, helping him eat, and making sure that he is toileted.
“I am lucky there,” she says. “He is continent.”
Kathryn also oversees her son’s post-high-school “transition” program. “There are no community-based alternatives because Sam has both developmental and medical needs,” says Kathryn, who takes her son regularly to museums, the aquarium, a communications club, and other community outings.
“Sam is very social. Everyone knows him,” explained his mother.
Making It Work
At night, Kathryn hardly sleeps unless she has respite care. “Sam has significant seizures — often when he sleeps,” she explained. When he has a seizure, his mother maintains his air passages and provides medication as needed.
Through the Golden Gate Regional Center, Kathryn gets 25 hours a week of respite care from a friend who is a trained nurse. “She is a friend, so willing to accept a rate well below what she could make.”
“I am spread so thin but I make it work,” she says.
Kathryn is concerned that she does not give adequate time to her 21-year-old daughter Maya. “There are just not enough hours in a day. It’s a big sacrifice for Maya. I try not to think about it and just put one foot in front of another.”
An Investment of Love
Kathryn says that her job as a paid family caregiver did not require her to be a nurse. Yet with Sam’s significant medical needs, she thinks that her medical background may have been a factor in allowing her to be Sam’s home care provider.
“IHSS was not offered to parents 24 years ago, only institutionalization,” Kathryn says. “It is now a widely accepted practice to enroll babies and children who have developmental and medical needs into the San Francisco IHSS program, with family members as the caregivers.”
“Many parents take on this job and just learn along the way,” she said. “They have an investment of love in their child and just do it.”
“If you have the proper information and get the supports that are guaranteed to these young individuals by law, you can survive at home.”
– by Deane Beebe
Direct-care workers will be among the topics at the 2011 Aging in America conference this week in San Francisco.
