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State Budget Crisis Threatens Home Care for Disabled
By Rosie Ruley Atkins
At 17, Sam Simpson is a lot like most Noe Valley teenagers. A sophomore at Raoul Wallenberg High School, he likes literature class and creating PowerPoint presentations on his computer. He's a huge Giants fan. He's becoming very interested in girls and he's learning to play the guitar and the drums. He sometimes argues with his sister, Maya, 15, but mostly they get along. He loves to laugh and is considered by his friends and family to be a prankster.
What makes Sam different is that he also uses a wheelchair and has partial blindness and extreme difficulty articulating speech. He sometimes has seizures that can be triggered by a sudden noise, such as a ringing doorbell or telephone. He has a pulmonary condition and respiratory problems that require him to be monitored around the clock.
The biggest difference between Sam and his peers, though, is that his daily life could be drastically altered by the outcome of the budget battle now raging in Sacramento.
Labeled 'Uninsurable' as a Baby
Sam was born with a rare neurological disorder that resulted in a series of health crises in the first days of his life. By the time he was six weeks old, he had already endured surgeries, a coma, CAT scans, and a barrage of invasive medical procedures. And even though he was famous in the hospital for his stubborn will to survive, the doctors advised his mother, Kathryn Simpson, to institutionalize him when he was a baby.
"I couldn't do that," she says. "I knew that in a setting like that, he would die within a year, if not a month, because of the constant monitoring he requires."
Simpson, a single parent, took her baby home, and subsisted on disability from her job as an ICU nurse, as she exhaustively searched for a way to care for Sam at home. By the time he was two months old, her health insurance company deemed Sam uninsurable.
"It was so frightening," Simpson recalls. "I had no referrals. It was 1986, so there wasn't the Internet. I didn't know what resources were available. I just spent a lot of time on the phone, gathering information."
The following year, she discovered the In-Home Supportive Services (IHSS) Residual Program, a state program that pays qualified, able-bodied parents and spouses to provide care and support to disabled family members in their homes. On an initial query to IHSS, Simpson was told that infants weren't eligible for the service. She persisted, however, and eventually persuaded an IHSS worker to come to her home to assess the situation.
"Sam was such a beautiful baby," Simpson recalls. "Absolutely angelic, with a sweet smile and golden hair. The woman from IHSS took one look at him and said that we could be in the program. I hate to say it, but I think we got in because he was so cute."
Average Pay Is $530 a Month
Today, Sam Simpson is one of 75,000 Californians (1,700 are San Francisco residents) who participate in the IHSS program. They range from Alzheimer's patients, to visually impaired adults, to kids with autism and cerebral palsy.
According to Donna Calame, director of San Francisco IHSS, the average San Francisco home care worker in the program is paid about $530 per month, a significant savings over the cost of caring for a patient in Laguna Honda Hospital, which runs around $9,000 per month.
When her family first enrolled in 1987, Kathryn Simpson was paid about $4 an hour for nine hours of work a day, she says. Since then, her hourly wage has risen to a little over $10.
Still, Simpson figures she's saved the state millions of dollars over the 17 years she's taken care of Sam. As a former nurse, she can monitor his health, dispense medications, and avoid the secondary infections that are common to people who live in group and institutional settings.
Cutbacks 'Draconian and Inhumane'
Despite its efficacy, the in-home care program is in serious danger and twice has been put on the chopping block in the past six months. Within six weeks of his election victory in October, Gov. Arnold Schwarzenegger, faced with a $6 billion deficit, asked for midyear caps on in-home and other services for the disabled. Then in January, he recommended that the IHSS Residual Program be eliminated from the budget for the coming fiscal year.
If the program is cut, according to the Legislative Analyst's Office, about 18,000 of the 75,000 Californians currently served by it would likely move to the Personal Care Services Program (PCSP), which requires families to hire non-relative providers at the rate of $6.75 per hour. (Ironically, this program also faces budget cuts.) Another 5,000 would probably leave their homes and move into assisted-care facilities, at a projected cost to the state of $125 million annually. That leaves about 52,000 people "facing service termination," according to the budget analyst.
"There is an idea that has been expressed by people very high up in the Department of Finance, that families providing care for disabled loved ones is a scam," Calame of IHSS says. "The fact is, it's a very cost-effective program. Even the Bush administration believes that flexible home-care programs are the most rational way to provide long-term care. California's program has been a model for the nation. Now we're decimating it. It's draconian and inhumane."
A Catch-22 Situation
For Simpson, the proposed cuts represent a Catch-22 nightmare. If she were to take a job outside the home and earn more than $1,000 per month, Sam would lose access to most of the health care, therapy, and educational programs she has spent years fighting to get him into. Even if Sam were deemed eligible for the PCSP program, Simpson would have to recruit someone else to come in and care for her son for what she calls "fast-food wages."
The legislative analyst addressed this issue by suggesting that "current responsible relative providers switch and become the provider for other families with IHSS recipients. For example, a mother currently caring for her daughter might be more comfortable with a nonrelative provider if she understood that the provider herself had a daughter receiving IHSS." In other words, the state is suggesting that Simpson go care for someone else's child while that child's mother cares for Sam.
Simpson's greatest fear is that the cuts might result in Sam's being forced into an institution. Her view of this alternative is the same as it was 17 years ago.
"I stay awake most nights monitoring his breathing and turning his body to prevent bedsores," Simpson says. "In the morning, I check his skin for rashes, help him with his oral care, and get him ready for school. In an institution, the staff is poorly trained and overworked. I can see him left in a corridor, sitting in his chair. And this is a kid who doesn't even like to stay home for quiet family time on Sunday afternoons."
Mobilizing for Disabled Rights
In recent months, Simpson, who was "pushed through the doors of politics" through her advocacy for her son, has been on the front lines of the fight to protect the IHSS program. She has lobbied Assemblymember Mark Leno and State Senator John Burton (both of whom are opposed to the cuts), granted interviews to the Los Angeles Weekly and the San Francisco Chronicle, and appeared on KQED-TV's News Hour with Jim Lehrer.
"The disabled don't have a voice," says Simpson. "And if you're not a part of the disabled community, you're probably not aware of the realities of the cuts."
With each new threat to disabled services, she urges her neighbors to write to their representatives.
"Legislators consider one negative letter to equal 10,000 votes. Rallies are viewed the same way," Simpson says. "So it really does make a difference."
Noe Valley Stores Display Petitions
Locally, friends and businesses have pitched in to help ensure that Sam, and others like him, have political clout. Simpson says that the Noe Valley community has been amazing in its eagerness to help. "Alexander [Gardener] at Video Wave has been wonderful to my daughter," Simpson says. "He's given her a place [at the store] to go and goof around since she was 8 years old. Now she covers shifts there."
Cover to Cover Booksellers, long a favorite destination for Sam, is another shop championing the cause. As soon as co-owner Tracy Wynn learned of Sam's plight, she started writing letters and e-mails to authors she knew who might be able to help bring visibility to the situation.
Both Cover to Cover and Video Wave are displaying a petition protesting the cuts to IHSS and urging the Schwarzenegger administration to look elsewhere for ways to balance the budget.
"Sam is a part of this community," Simpson says. "He's taught so many people about acceptance and diversity. Kids, especially, get to know him and no longer fear somebody who is different. He needs us to be his voice." m
Editor's Note: On April 22, Gov. Schwarzenegger reversed his decision to cut in-home care for the disabled--sort of. His staff told a State Senate committee that California would now seek funds for the program from the federal government. However, budget planners warned that the in-home program would be put back on the table if federal funds failed to materialize. Reached at press time, Kathryn Simpson said this latest shift only means that her family's fight becomes broader. Now, she is also targeting officials in the Bush administration, the U.S. Health and Human Services Department, and her representatives in Congress.
PEOPLE WHO CARE ABOUT DISABLED SERVICES FUNDING CUTS
California Disability Community Action Network: www.cdcan.org
Save Home Care: www.savehomecare.org
PEOPLE WHO ANALYZE THE BUDGET
Legislative Analyst's Office (LAO)
Web site: www.lao.ca.gov
PEOPLE WHO CAN MAKE OR BREAK THINGS
Governor Arnold Schwarzenegger
Sacramento, CA 95814
State Senator John Burton
Room 205, State Capitol
Sacramento, CA 95814
State Assemblymember Mark Leno
P.O. Box 942849
Sacramento, CA 94249-0013
E-mail: assemblymember.Leno@ assembly.ca.gov
U.S. Senator Dianne Feinstein
331 Hart Senate Office Building
Washington, DC 20510
U.S. Senator Barbara Boxer
112 Hart Senate Office Building
Washington, DC 20510
E-mail: http://boxer.senate.gov/ contact/webform.cfm
U.S. Congressional Representative Nancy Pelosi
2371 Rayburn HOB
Washington, DC 20515
415-556-4862 or 202-225-4965
Secretary Tommy G. Thompson
U.S. Department of Health and
200 Independence Avenue SW
Washington, DC 20201
Toll Free: 1-877-696-6775
Web site: www.hhs.gov