Modern medical technology makes it possible for medically fragile, technology dependent children to live at home with their families. Most people think of ventilators in the context of sickness: A ventilator is a machine that breathes for a person who is very sick, usually in a hospital intensive care unit. But for children and adults with breathing disabilities, a ventilator is a long-term tool for getting through life. 

Institutional care — the kind of care that is provided in hospitals and nursing homes — isn’t the kind of life that families choose for their children or that adults choose for themselves. Yet, when children who rely on ventilators grow up, they are often forced to live in nursing homes because California doesn’t adequately fund other options. In short, ventilator-dependent adults struggle to find nursing care in their homes and in the community because of low state reimbursement rates. 

Younger children who are ventilator dependent often can live at home with their families. Hospitals provide parents with training on how to manage the machines and tubes. The machine and the patient require constant care — if the circuit is blocked or disconnected, or if the patient’s airway is blocked with mucus, the patient will die. Despite this risk, medically stable ventilator users can live full and productive lives in the community, if they have access to care.

On paper, the state’s Medi-Cal system, which provides health coverage to Californians who qualify because of disabilities or income, offers access to nursing care at home. But Medi-Cal reimbursement rates to home nurses haven’t kept pace with inflation and the cost of care. That means it’s almost impossible to find 24/7 nursing care, so families often take on most of the responsibility themselves. Unfortunately, as young adults transition into managing their own lives and care, the burden of recruiting, training and scheduling consistent home nursing can be too much to sustain. And parents, who are often the primary caregivers, are aging themselves, and often cannot care for their adult children as they once did.

Congregate Living Health Facilities (CLHFs) are a housing option for ventilator-dependent adults that balance independence with their need for medical care. These housing options provide the same kind of care that subacute hospitals provide – nurses are available at all hours to manage the patient’s breathing machines and medications. They differ from nursing homes because they allow residents to remain integrated with the community. The problem is, there are not enough of these homes to care for all the ventilator-dependent adults who would benefit from them. And those homes that do exist mostly don’t accept Medi-Cal patients because of the state’s low reimbursement rates. What’s more, a waiver program that pays for Medi-Cal recipients to receive care in a congregate home doesn’t offer anywhere near enough spots for the people who need it. As of January 2024, more than 4,500 people are on the waitlist for the waiver.

Ryan Anderson, 31, has Duchenne muscular dystrophy, a genetic disorder that causes progressive loss of muscle function. He has lived in the Sunnyview Home, a CLHF in Northridge, for the past seven years. Anderson has used a wheelchair since the age of 9. As his disease progressed and his muscles weakened, breathing became more difficult. Anderson had a tracheostomy placed and began using a ventilator full time in his early twenties. Anderson can speak and uses an iPad with a stylus in his mouth to text, make phone calls and use social media. 

Anderson values living in a congregate home, as opposed to a nursing home, because he can get the medical care he needs while maintaining privacy and independence. “I have my own van, so a lot of times, I’ll have friends of mine come and take me in the van, maybe go to a concert or see a movie,” he told me. Anderson has a varied taste in music, ranging from Metallica to Ed Sheeran, and the ability to go out and see live music is important to him. The staff trained his friends from church on how to manage his medical equipment while away from the house. He says that living in the congregate home means he gets, “more care, more independence, more freedom” compared to living in a nursing home. 

Irene Tokar operates two CLHFs in southern California. She worked with ventilator dependent patients as a respiratory therapist and saw a need for places where patients could live and access care after leaving the hospital, because “not every family has the financial means to provide appropriate care at home.” Tokar wants the facility to feel like a home for its residents, “because it is their home.” 

Robert Leonard, 38, appreciates the one-on-one care he is able to get in the Villa Martha congregate home in Woodland Hills, which Tokar runs. Leonard uses a ventilator and wheelchair due to muscular dystrophy. He is fully dependent on caregivers. “If I’m disconnected just a minute, I’m already close to death from no oxygen,” Leonard told me. He has lived in both subacute hospitals and congregate homes, and said that care he is able to get in the latter is superior because the nursing staff is more familiar and available. “When you’re stuck in a big institution, you’re just another number,” he told me. “If you’re lucky, you get five-minute bed baths, and they’re on to the next patient.” 

Leonard relayed an incident that occurred when he lived in a subacute facility. His ventilator circuit disconnected, and staff didn’t notice. He was unable to breathe and unable to call for help, because he is only able to speak when the ventilator is providing him with airflow. Leonard was eventually able to make eye contact with a staff member who reconnected his circuit, but he felt helpless and afraid. He said that in a large facility, “you’re at the mercy of someone hearing you, hearing your alarms,” but that in a congregate home, nurses are able to respond to emergencies faster because there are fewer patients to take care of.

Medi-Cal pays for ventilator dependent adults to live in CLHFs through the Home and Community Based Alternatives (HCBA) Waiver, a program that provides extra support so that medically fragile children and adults can access nursing at home. Medi-Cal pays for care in nursing homes automatically, but adults have to enroll in the waiver in order to access congregate care. The waiver reached its capacity limit and temporarily stopped taking new enrollments in 2023. Although the state increased capacity by 1,800 and resumed enrollments in January 2024, the intake process for new enrollments has been slow and the increased capacity still leaves thousands of people on the waitlist. Ventilator dependent adults who are enrolled in Medi-Cal can’t afford to pay out of pocket for care (and they shouldn’t have to). This means that if anyone wants to move to a congregate home, they have to wait months or years for a spot in the program to become available.

Medi-Cal pays congregate homes about $490 per day for waiver participants, a rate that has not been increased since 1983. Subacute hospitals, who take care of medically identical patients in an institutional setting, are paid about $1,000 per day. Other funding sources — Medicare, private insurance, workers compensation — pay congregate homes two to four times as much as the waiver for the same care. The problem with these other funding sources is that they only pay for temporary stays. This happens because our health care system generally draws a line between the kind of care that sick people need to get better (which is generally covered) and the kind of ongoing, long-term care that disabled people need to live (which is generally not covered). Medi-Cal, through the HCBA Waiver, is the only program that pays for ventilator dependent adults to live in CLHFs.

Of approximately 1,400 congregate home beds in California, only 229 are currently in use by Medi-Cal waiver participants. Most limit the number of Medi-Cal patients they will accept or have stopped taking waiver clients entirely because the payment is so far below market rates. Tokar said that she had to scramble to accept several new patients on short notice in 2017 because a statewide chain of congregate homes stopped accepting Medi-Cal as a payment source and moved to evict those residents. 

Mariam Voskanyan, president of the Congregate Living Health Facility Association, explained that the biggest expense for these homes is staff. The rates she can pay are 35 percent below what subacute hospitals can pay, which makes it difficult to hire and keep nurses. Voskanyan explained that if she could pay nurses a competitive wage, it would reduce staff turnover and improve patient care.

Housing and health care are intimately related, especially for medically fragile adults who can’t live without access to nursing care. California has a legal and moral obligation to provide medically fragile adults with options to live outside of nursing homes. “People with disabilities have the right to live and work in the community rather than a facility,” Nicholas Levenhegen of Disability Rights California explained, citing the Olmstead Supreme Court case that clarified that state Medicaid plans need to fund home and community-based services, not just institutional care.

California has many programs that allow children and youth with special health care needs to live at home with their families. As children transition into adulthood, many of those supports dissolve. Medically fragile young adults should not have to be institutionalized to access care. California can preserve housing options for medically fragile young adults by increasing the rate Medi-Cal pays for congregate homes and eliminating the waitlist for new waiver applications.

Jennifer McLelland has a bachelor’s degree in public policy and management from the University of Southern California and a master’s degree in criminology from California State University, Fresno. She worked for the Fresno Police Department in patrol for eight years. She is currently a stay-at-home mother and paid caregiver through the In Home Supportive Services program.  She is active in advocating for disability rights and home- and community-based services.