After four weeks of running a tent city in South Berkeley to protest proposed cuts to state disability programs, Jean Stewart took a break last Tuesday and reclined all the way back in her wheelchair until her body became parallel to the street. The son of a nearby protester was visibly impressed.
“If you go back any further, you’re going to tip over,” he warned her.
Stewart worked with pesticides at a pharmaceutical company 30 years ago, before federal regulation required workers to wear masks and gloves when handling the toxic substances.
Five years after Stewart left the company, doctors found a rare and invasive tumor in her hip. After three unsuccessful surgeries, most of her hip muscle was removed to eradicate the tumor.
“I’m missing a huge muscle mass most people take for granted,” she said, pointing to her hip.
What replaced the muscle mass was chronic pain that eventually put Stewart into a battery-powered wheelchair.
Stewart, a self-described disability activist, helped organize the tent city, dubbed “Arnieville” – an homage to the Hoovervilles of the Great Depression – which has been home to dozens of disabled activists protesting cuts to state disability programs for a month.
Many of them use the state’s In-Home Supportive Services (IHSS) program to pay workers to help those with disabilities with routine chores. Approximately 400,000 Californians currently receive IHSS services – “consumers” in IHSS lingo – and about 400,000 more are currently employed as workers under the program.
Cuts in Gov. Arnold Schwarzenegger’s proposed state budget would mean 400,000 consumers and workers would be eliminated, according to Steve Mehlman, spokesperson for the United Domestic Workers Homecare Providers Union.
Schwarzenegger has cited concerns about fraud as one reason to make cuts to IHSS. According to a fact sheet on the program released by Schwarzenegger’s office in 2009, fraud may account for more than 25 percent of total funding for the program.
He also awarded $26.4 million last year to counties across California to eradicate duplicitous practices within IHSS, which he deemed “riddled with fraud and abuse.”
In addition, the state is facing a budget deficit in the billions. Schwarzenegger said he has “no choice” but to eliminate “some very important programs.”
“California no longer has low-hanging fruits,” he said in a May speech. “We literally have to take the ladder away from the tree and shake the whole tree.”
Because the vast majority of “consumers” are low-income, transferring to a nursing home will be the only option for many of those cut from IHSS.
“When people are put into institutions, they lose all of their autonomy,” said Lauren Steinberg, systems change analyst at the Berkeley Center for Independent Living. “They’re literally locked up in a facility 24 hours a day.”
She added it is difficult for those in nursing homes to work, raise families and lead normal lives because they are separated from the community.
Nursing homes cost up to six times more per resident than in-home care, according to testimony made by Stephen Kaye, research director for the Disability Statistics Center at UC San Francisco to the “Little Hoover” Commission on California State Government Organization and Economy.
In May, Kaye told the state agency that nursing home care costs around $60,000 to $70,000 per resident per year, compared with $10,000 for in-home care.
If the state covers a significant portion of nursing home care costs for those cut from IHSS, the state will ultimately lose money, Kaye said.
“Nursing home expenditures would rise to at least equal the current level of IHSS expenditures,” Kaye stated in his testimony.
But the cost could be a moot point and the cuts illegal, according to Arnie-villains. In the 1999 Olmstead v. L.C. U.S. Supreme Court decision, the Supreme Court held that the state may not institutionalize those with disabilities, arguing that separating an individual from his or her community amounts to discrimination.
Last year, U.S. District Court Judge Claudia Wilken blocked Schwarzenegger’s attempts to reduce wages for IHSS workers and to change eligibility standards, which would have removed 130,000 consumers from the program, citing that they violated federal law.
These decisions raise a serious question as to whether the current proposed cuts to IHSS will hold up to legal scrutiny.
The total amount to be cut from the program will not be known until the state finalizes its budget.