Steven P. Wallace, Center associate director and professor in UCLA's School of Public Health, is the senior author of the policy note, Holding On: Older Californians with Disabilities Rely on Public Services to Remain Independent. Here, he talks about the complex web of support that helps some of the state's low-income elderly disabled residents continue to live in their own homes, the types and amounts of support needed, and whose responsibility it is -- family members of public programs -- to care for these Californians as they age.

Q: What’s involved in the “web of support” that keeps seniors living independently?

Caregivers, who can be unpaid family or friends or paid help (which can include family members), are at the center of the support web for older adults with disabilities. They help with personal care like bathing and eating, household chores like cooking and cleaning, and sometimes transportation. Their presence in the home helps reduces social isolation and improves morale. Other support includes home-delivered meals, in-home physical therapy, nursing services (such as monitoring wounds or giving injections), home modifications (such as installing grab bars to reduce the risk of falling), housing assistance and transportation.

The variability and complexity of support needs can be difficult to address during a caregiver’s four-hour shift. It’s easier to schedule some routine needs like baths or helping a person into bed at night, than to accommodate the more complex needs of others such as a diabetic who requires frequent small meals or another individual who needs help walking to maintain circulation or a senior who has a complicated medication schedule.

The more sources of support involved, the more coordination it takes, especially when doctor and other outpatient care is included. We call this a “web,” because it is all intricately connected and the failure of even a seemingly small part can make the whole system unravel.

Q: Wouldn’t some of these disabled older adults be better off in a nursing home?

Ask most older adults that question and you will get the same answer: No! Older adults who have lived independently their entire lives almost always want to continue to live in their own homes as long as possible. Being in their own familiar environments – controlling their own lives – is more important to most of them than the added level of care in a nursing home. Some seniors need around-the-clock on-call help available only in nursing homes, but most older adults with disabilities are able to manage in less restrictive environments when given adequate support.

Q: Isn’t this all the family’s responsibility?

Family members are often involved in helping their older disabled relatives who receive state-supported services. But very few families have the resources to curtail their work and lives so as to be able to provide part or full-time care for a disabled relative. Sometimes family members don’t live near each other, and even nearby relatives may have other family and work responsibilities that limit their availability. This is particularly true of low-income families, who may already be working more than one job that they cannot afford to quit. When unpaid family members do help, they usually provide assistance where paid services stop – on weekends, shopping, financial management and overall coordination of the care network. In our modern society, it’s not always possible for family members to provide the complex and intensive care that older adults with disabilities need, especially when that family may not have the financial resources to do so. For these families, even a few hours of state-supported help can be a godsend.