Published in the National Association of Social Workers Newsletter - California newsletter (December 2018) 

Silent Crisis: Very few options exist in California for low-income families who care for the elderly with Alzheimer’s who could “wander”.

By Jason Bloome

Seniors are the fastest growing demographic age group in California. California’s Department of Finance predicts between now and 2026 the number of seniors 65 and older will grow by 2.6 million: This is five times more than the demographic increase for 25- to 64-year-olds. By 2060, all demographic age groups are expected to decrease while the senior population is expected to increase by 12 percent.

The increase in the elderly population will require that the next California governor deal with the impact on state coffers for long-term support and services (LTSS) programs for seniors who are low income and require care. In Home Support and Services (IHSS) and nursing homes comprise a large part of the state’s LTSS expenses: the cost for both programs this fiscal year is $13 billion. Without a smart public policy to contain LTSS expenses, California will face a fiscal healthcare crisis in the future.

Seniors on LTSS include many who have dementia or Alzheimer’s. By 2030, the number of seniors living with dementia or Alzheimer’s in California will double to more than 1.1 million. More than six in 10 of these seniors will “wander” and require 24-hour supervision. Many “wanderers” are safely cared for at home by family members and with the help of aides from private-paid home-care agencies which usually charge from $17 to $24 per hour. Adult day care centers that offer some hours of respite care to primary caregivers can also allow “wanderers” to safely reside at home.

Options for low-income “wanderers” on LTSS services include IHSS: a government program that allows Medi-Cal to pay for aides that provide in-home care services. On average, IHSS pays for 72 care hours/month (although the maximum allowable IHSS care hours/month is 283, most recipients do not receive this many care hours). Since IHSS does not pay for full-time care the burden of care usually falls on the primary caregiver who is oftentimes an elderly spouse. For the 20 percent of Alzheimer’s patients who have sundowners and might experience changes in sleep schedule, have aggression and/or restlessness, providing care at night is also particularly challenging.

Very few options exist for “wanderers” on LTSS who require too much care to remain at home. The state currently has only one program, the Assisted Living Waiver (ALW), which allows Medi-Cal to pay for small board-and-care homes or larger assisted living with dementia units. Unfortunately, enrolling with the ALW program is very challenging: there is a waitlist of more than 2,500 seniors and limited availability for “wanderers” when more than 90 percent of ALW slots are in larger assisted living settings with only a few having dementia units.

The other state-funded option for “wanderers”: locked skilled nursing facilities (SNFs). Finding a locked SNF that has an available Medi-Cal bed is onerous for many reasons: most SNFs would prefer short-term stay Medicare vs. long-term care Medi-Cal patients (Medicare pays twice as much as for Medi-Cal) and in many counties there are very few secured SNFs (and, even if a bed is found in a locked SNF, it might only be in a SNF that provides substandard care).

In Los Angeles, the largest county in California with the most LTSS recipients, there are only 38 locked SNFs. In nearby large counties, Riverside and San Bernardino, there are only 13 locked SNFs. Of these locked SNFs many are rated as “below average” or “poor.”

Ratings for Locked SNFs in Los Angeles, Riverside and San Bernardino Counties

 Los Angeles          Riverside              San Bernardino

Total # Locked SNFs:             38                                10                                3

Superior:                                  1                                  1                                  1

Above Average:                      7                                  1                                  1

Average                                   11                                1                                  1

Below Average                       10                                4

Poor                                         10                                3

The lack of care home options for low income “wanderers” is not just a private affair. Fiscal repercussions include healthy taxpayers leaving jobs to provide care for their relatives and strains on healthcare systems when hospital social workers and discharge planners cannot find appropriate beds for patients who can no longer be safely discharged home. Since most “wanderers” do not need skilled nursing care and have only custodial care needs, Medi-Cal also overpays for locked SNFs for seniors who could be adequately cared for in more affordable community-based care settings.

Aging and dementia are not sexy topics, do not capture national headlines or attract large interest groups that put propositions on the ballot. California’s Proposition 1 helps the homeless, Proposition 4 helps children and Proposition 12 helps poultry. The plight of unhappy chickens is in the news but there is no hue and cry for “wanderers” who are forced into substandard, locked SNFs when they do not need to be there.

In the face of state inaction perhaps we need a new ballot proposition with this description:

This proposition is budget neutral and will shift funds already spent on LTSS services to allow seniors who “wander” to live in community-based care settings rather than being forced to reside in expensive, substandard locked nursing homes.

On the other hand, we don’t need a proposition when DHS already has the authority to add an assisted living rate category to the California Coordinated Care Initiative (CCI) rate tables. This would allow CCI managed care organizations to develop SNF diversion/transition programs that would include community-based vs. institutional options for “wanderers.”

Adding a new assisted living rate category is sensible, budget-neutral (since eligible SNF diversion/transition candidates would only be those with high-care needs already receiving LTSS services), is supported by the California Collaborative for Long Term Care consisting of more than 34 aging and disabled rights groups and would provide an ideal workaround to long ALW waitlists and substandard locked SNFs. It also fulfills CCI’s core mandates: save Medicare and Medi-Cal dollars and shift LTSS services from expensive SNFs to more affordable community-based care options.

Good ideas are desperately needed in a state that must spend healthcare dollars wisely as the aging population surges in California. If there is an elegant fix to keeping low income “wanderers” out of substandard locked SNFs and saving Medi-Cal dollars, what is preventing the state from moving forward with this smart public policy?

Jason Bloome is owner of Connections–Care Home Referrals, an information and referral agency for care homes for the elderly in Southern California. More information can be found at