Olivia Donna Gelardin was exquisite. At almost 5 years old, Livy, as we called her, was delighted to watch sunlight reflect off the window, feel the sand run through her fingers in her garden, splash soapy water in the bath tub with her brother.
She was our first, our dream-come-true baby, our patient teacher.
Livy was born with Schizencephaly, a rare neurodevelopmental disability characterized by global delays in gross and fine motor skills, cognitive functioning and speech.
Initially, her diagnosis made us anxious. My wife and I have physical disabilities and understood how to advocate for our own needs, but our daughter’s reality was somewhat unfamiliar ground. Mostly, we feared that her intellectual disability would result in exclusion from participating in play, learning and peer-relationships. We sought every opportunity to help our little girl grow and thrive. With the support of early intervention, intensive therapeutic supports, various State-funded services, love and support from family and, most of all, Livy’s extremely hard work, our little girl blossomed.
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.
It is often said that the future always begins in California. Notwithstanding the results of the recent election (in which California took a decidedly contrarian position on candidates and ballot initiatives than most of the rest of the country) California’s shifting demographics demonstrate what will be happening nationally for decades to come.
We all know about the baby boomers and how they have changed the face of our state at every stage of their lives…when they entered school, went to college, created families and bought homes, and began to need more health care. But we may not know that California is aging earlier and to a greater degree than most other states. We are getting gray sooner. The unique history of our state’s postwar population boom with millions of young people settling here and starting families means we are growing old faster than nearly any other state. At the same time we have become more ethnically diverse and will continue to in coming years.
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.