‘Working beneath water’: Households attempting to put family members in Medi-Cal assisted residing program wait years

Former grad faculty classmates Kelsey McQuaid-Craig and Chelsea Oruche have just lately bonded over the same wrestle — attempting to put family members in assisted residing.

McQuaid-Craig and her husband, Brandon, want to place his mom, Mary, 67, who has dementia and is deteriorating rapidly, in a reminiscence care program in Sacramento County. They’re at present anticipating their first little one, and caring for Mary full time whereas juggling their careers has change into overwhelming.

In San Pedro, Oruche is experiencing the same stress. Caring for her 70-year-old mom, Peggy, who has a number of well being points, whereas elevating a toddler, attending regulation faculty and dealing is resulting in burnout.  

Assisted residing and reminiscence care facilities aren’t low cost — about $5,000 to $7,000 a month — a excessive value even for households with considerably snug incomes. So the 2 associates appeared into Medi-Cal, which via a particular challenge, covers assisted residing prices for eligible low-income seniors and folks with disabilities in 15 counties, together with Sacramento and Los Angeles. 

Demand for this system is excessive and the slots are restricted. Scoring a spot in Medi-Cal’s assisted residing program is a years-long odyssey for some, leaving relations who function caregivers stretched skinny as they scramble to seek out workarounds for his or her liked one’s care and residing scenario. 

The state has been increasing this system, which is nice information for households on this service, however for some in line now, it may nonetheless be greater than a yr earlier than they’re positioned in a facility.

As a result of spots are restricted, typically these should first get on a waitlist. These waitlists might be prolonged — in some circumstances, folks being positioned now have been ready since 2019.

McQuaid-Craig mentioned that in January she was informed by care coordination companies, which contract with the state to evaluate people and assist place them in a facility, that the wait may very well be so long as two years within the Sacramento space. The few companies that shared estimated wait instances with Oruche within the spring informed her that Peggy’s wait may very well be wherever from one to a few years in Los Angeles County. 

In keeping with the state’s most up-to-date information, there are 6,301 folks enrolled in Medi-Cal’s assisted residing program and 4,754 persons are ready to get in. 

Within the meantime, households strive their greatest to care for his or her family members with little or no respite. Peggy, for instance, has persistent ache stemming from a fall many years in the past. Some days are higher than others, however she offers with melancholy, anxiousness and neurological points, and it’s change into clear that she may have extra care than Oruche can present. 

“We’re working beneath water,” Oruche mentioned. “It’s not sustainable. It’s a full-time job to take care of a guardian. Except you’ve accomplished it, you’ll be able to’t wrap your head round it.”

She believes putting her mother in assisted residing will assist rekindle household relationships. “It would enable us to be her youngsters once more,” she mentioned.

Provide and demand

A waitlist to get into this program isn’t new, however demand continues to outgrow provide — signaling that California is in want of extra housing and care choices for low-income seniors who can now not stay on their very own. Getting old and well being advocates say that is regarding, particularly as one quarter of Californians are anticipated to be older than 60 by 2030. 

In response to the rising demand, California sought approval from the federal authorities to safe 7,000 further slots for its Medi-Cal assisted residing program. It received the inexperienced mild in January. (As a result of Medi-Cal is collectively funded by the state and the federal authorities, the state wants federal permission to increase packages.) 

Officers with the California Division of Well being Care Companies, which oversees this system, mentioned they began rolling out these new spots in Might and plan to clear the waitlist or at the very least cut back it substantively by Feb. 28, 2024. 

“The Division acknowledges that attaining this purpose relies on a number of exterior components, together with [coordinating agencies’] capability, mattress availability, and continued development of the demand,” Katharine Weir, a spokesperson with the Division of Well being Care Companies, mentioned in an electronic mail. 

Weir mentioned the division can be working towards integrating the assisted residing companies with one other one in all its long-term care packages, which ought to streamline companies and permit extra folks to entry assisted residing.

Advocates say the necessity might be a lot greater than enrollment and waitlist numbers mirror. Many Californians have no idea that assisted residing, together with some reminiscence care packages, is an choice for eligible low-income folks on Medi-Cal. (Whereas companies are paid for, folks do pay a portion of the fee for his or her room and board via their supplemental safety revenue.) 

Maura Gibney, director of organizational improvement at California Advocates for Nursing Residence Reform, described Medi-Cal’s assisted residing program as opaque. Many individuals don’t know that this profit is on the market as a result of there’s typically not loads of public outreach about this system, Gibney mentioned. 

“But when there was, the waitlists wouldn’t be two years lengthy, they’d be 5 years lengthy,” she mentioned.

Navigating the system

Seniors and folks with disabilities who want round the clock medical care typically require a nursing dwelling setting, which is a mandated profit beneath Medi-Cal, and individuals who qualify are sometimes positioned instantly in these amenities. Assisted residing is taken into account another for individuals who don’t should be in a scientific surroundings, however may have help finishing day by day duties. 

In California, 55% of older residents and folks with disabilities need assistance from one other individual for routine care, equivalent to finishing chores, buying or attending to appointments, in keeping with a latest evaluation from the UCLA Middle for Well being Coverage Analysis. About 21% need assistance with private care, like consuming, bathing and getting dressed. Of those that want help, 40% reported needing extra or not receiving any in any respect. 

Individuals on Medi-Cal typically have two entryways into assisted residing. They are often positioned instantly if they’re being discharged from a hospital or being transferred from a nursing dwelling. These people are prioritized for the assisted residing program as a result of hospital care and nursing dwelling residing is dearer, so this transfer saves the state cash. People who find themselves transitioning into assisted residing from their dwelling should first get on a waitlist. As soon as it’s their flip, they’ll submit an software to enroll in this system. Traditionally, about 60% of individuals on the waitlist find yourself enrolling in this system, in keeping with the Division of Well being Care Companies.

Which means whereas people wait, caregiver duties often fall on a daughter or son or one other relative who bears the brunt of the fee and work. About 91% of Californians who take care of a member of the family or good friend achieve this with out getting paid, in keeping with state information. 

There’s the price of non permanent care when McQuaid-Craig and her husband must journey and the home changes to make it safer and simpler for Mary to get round. Then there’s the psychological and emotional toll: the hours-long wrestle of attempting to persuade Mary it’s time for a shower; the endurance to calm her when she will get agitated. 

After McQuaid-Craig discovered she was pregnant, she appeared for tactics to hurry up the method of getting Mary right into a reminiscence care program. Care coordination companies informed her that except Mary fell or grew to become sick and landed in a hospital or nursing dwelling, the one different solution to place her sooner was to get the county’s Grownup Protecting Companies company concerned.

By way of this course of, the county company sends a case employee to folks’s properties to evaluate their residing scenario. If this company decides that an individual is experiencing abuse or neglect, it may well fast-track an individual’s transfer into assisted residing. Self-neglect, when an individual is now not in a position to take care of themselves — can’t feed, dress or care for their very own well being — may qualify an individual for an expedited course of.

“We needed to file a self-neglect case as a result of there isn’t any abuse, however we are also operating up on not with the ability to care for her for for much longer. Sadly, that was the one solution to transfer her up (on the waitlist),” McQuaid-Craig mentioned. 

McQuaid-Craig and Oruche met throughout their graduate research on the College of Southern California’s public administration program in Sacramento. McQuaid works in well being coverage for the California chapter of the American Schools of Emergency Physicians, Oruche for a enterprise philanthropy. Each mentioned the cumbersome technique of attempting to put their dad and mom in reminiscence care and assisted residing raises questions on how accessible this system really is. 

“I’ve to think about that if two extremely educated, white girls are struggling to get solutions and discover placement for his or her low-income family members then there’s much more occurring right here. Particularly for immigrants or non-native English audio system, and people who should not have connections,” McQuaid-Craig mentioned.

Throughout their analysis, they grew pissed off by the shortage of transparency from a number of the care coordination companies they contacted. There are 31 companies within the state, in keeping with a just lately up to date checklist from the California Division of Well being Care Companies. 

Every company has its personal waitlist, and an individual can solely join with one. That means selecting one over the opposite may very well be the distinction in how lengthy folks wait. She needed to understand how lengthy every waitlist was to decide on the shortest one. A listing offered final week by the Division of Well being Care Companies reveals companies’ waits fluctuate significantly, with lists as brief as one particular person to so long as 929 folks. 

However for Oruche “Half of the companies on the checklist (serving Los Angeles County) didn’t reply. And of the half that did, solely 4 or 5 gave me a quantity,” she mentioned. A few of the companies informed her that her request was uncommon, she added. 

Neil Rotter, CEO of Libertana, a care coordination company serving Fresno and Southern California, mentioned companies don’t all the time inform folks the place they stand in line as a result of they don’t need to deter folks from looking for companies; plus, that quantity may change rapidly from one month to a different. He mentioned his company is upfront with households when it’s experiencing an extended wait than different companies.

Rotter mentioned a part of the problem is the state’s transfer from a single statewide waitlist to an agency-specific waitlist. That’s when the state division began issuing an equal variety of slots to every company each month, which has prompted questions on how honest that’s. For instance, individuals who join with newer companies with shorter waitlists could also be positioned earlier than somebody who has been ready longer at an older company. 

Lauren Firenze, program director at Senior Care Options, a care coordination company that serves Sacramento and San Joaquin counties, echoed this concern. Firenze advises households to contact multiple company and work out which is probably the most useful and responsive. Additionally, “don’t wait till you’re in disaster to get on the waitlist. Some folks wait too lengthy to entry companies,” she mentioned. 

As of final week, McQuaid was engaged on an expedited assisted residing software for Mary, and Oruche in the end selected a care company that gave her an estimated yr wait time. Oruche mentioned she has additionally talked to Peggy’s physician in regards to the nursing dwelling choice, and though that isn’t Peggy’s choice, going to a nursing dwelling first would enable her to extra rapidly switch into assisted residing. 

However that choice “appears actually inefficient and actually disruptive to her psychological well being,” Oruche mentioned. 

For now, Mary and Peggy proceed to attend.