The California Collaborative for Long Term Services and Supports is a coalition of statewide organizations which meets regularly to discuss the concerns facing California seniors and people with disabilities. Among the key issues is the growing crisis facing family caregivers. Recently, the Collaborative sponsored a presentation on Picking Up the Pace of Change for California’s Caregivers, a newly released report from the California Task Force on Family Caregiving. The report provides an overview of the compelling challenges facing family caregivers, and outlines public policy for recommendations for California to make improvements to support them.
Emily is typical of a family caregiver facing complex challenges. As a Family Nurse Practitioner and mother of two young children, she is also a caregiver for her aging father Robert, who was diagnosed a year ago with amyotrophic lateral sclerosis, known as ALS. Along with her other responsibilities, Emily travels two hours from Santa Rosa to Sacramento many times each month to accompany her father to medical appointments and oversee his care. Her siblings live out-of-state and her mother, who serves as Robert’s primary caregiver, also works full-time and is overwhelmed with the responsibilities of his care. Emily knows that as her father’s health deteriorates, he will eventually be unable to walk, dress, write, speak, swallow and breathe, and caregiving will become even more emotionally and financially difficult. Due to her medical training, Emily has an advantage over other family caregivers – she has the knowledge and skills she will need to provide care for her father. But despite her training, the responsibilities of her own job, caring for her small children, and being a long-distance caregiver for her father is a difficult balancing act that will become even more challenging as his illness progresses. Continue reading
California is experiencing an unprecedented crisis in affordable housing.
According to the state Department of Housing and Community Development, over 1.5 million households in California pay more than half of the income toward rent. Since 2008, the state has experienced a 69% decline in state and federal investment in production and preservation of affordable housing.
This crisis lands most heavily on those who are aging or disabled, and have high health care needs. Of those Californians who are most in need of affordable housing – those who currently pay more than half their income toward rent – thirty-five percent are elderly or disabled households.
This trend will only get worse; older adults are the fastest growing demographic in the country. By 2060, 1 in 3 Americans will be age 65 or over. Increases in housing and health care costs, combined with stagnant Social Security and SSI disbursements, are creating tremendous poverty among the older adult population.
Federal proposals to block grant Medicaid are not new, but with the new administration and Congress it is increasingly likely that some form of this proposal is going to become reality. The risk to older adults and people with disabilities is substantial.
At this point it is difficult to forecast the priority the administration and Congress will give to the numerous, substantial policy changes they reportedly have in mind, but it appears that “repeal and replace” of the Obama administration’s signature achievement, the Affordable Care Act, continues to be a primary focus, and the Trump administration has signaled that block granting Medicaid will be part of their “repeal and replace” proposal. In recent weeks Speaker Ryan has suggested the outline of “first steps” this session could include a range of alternatives, from budget actions aimed at reducing federal spending through options to rein in Medicaid expansions in some states and allowing state Medicaid block grants in some form.
Sacramento locals are proud of the brand new Golden 1 Center, home of the NBA Kings. For basketball games, seating capacity is 17,500. The team would have to sell out 35 games in a row to represent the number of Californians today living with Alzheimer’s disease. It would take 86 consecutive games to seat every family caregiver supporting a loved one with dementia in our state.
Unlike other threats to the golden state, such as climate change, affordable housing and transportation, Alzheimer’s poses an equal but less visible threat – one that is too often overlooked because of stigma, the #1 problem identified in California’s State Plan for Alzheimer’s Disease. Stigma obstructs access to care, with fewer than 50 percent of people with Alzheimer’s or their caregivers reporting being told of their diagnosis as compared to more than 90 percent of people with the four most common types of cancer. In this era of whole-person care, a key ingredient – accurate Alzheimer’s diagnosis – is missing in the care plan more than half the time.
The federal Affordable Care Act, enacted in 2009, contained a provision that surprised many people. A concerted effort by a wide variety of organizations resulted in a provision to begin addressing a gaping hole in our social safety net that most people do not know exists.
Most people believe that existing health insurance, and certainly Medicare, covers the cost of services and supports needed by people who can no longer perform activities of daily living, such as dressing, eating, toileting, or getting around. It doesn’t. The only option for people who have not saved enough to purchase these services, or purchased long-term care insurance when healthy enough to qualify, is to spend themselves into poverty and enter a nursing facility that accepts the meager reimbursement offered by Medi-Cal.