Infrastructure calls to mind big, physical structures—roads, bridges and buses—that make it possible for people to get around and for society to function. But infrastructure is also the behind-the-scenes programs that make day-to-day life manageable for ordinary people, such as services and supports for children with disabilities and their families. These include in-home nursing programs that allow kids with special health care needs to live at home and their parents to care for them without going bankrupt or experiencing exhaustion.

As federal and state policy makers make plans for infrastructure and budgetary spending, let’s not forget to invest in the infrastructure of care too, particularly for children with disabilities. The framework of support that makes it possible for families to care for children with complex care needs safely, in their own homes and in their local school systems, is part of our infrastructure of care.

In California, the Home and Community Based Services (HCBS) system funded through Medi-Cal is a key part of the state’s care infrastructure. It provides in-home nursing care for children with medically intensive disabilities, along with other services such as home therapy, respite care and home modifications. This system exists to honor the fact that people with disabilities have a fundamental human right to live in their own homes and not be forced to live in institutions or group settings. But it falls far short of its stated goals.

On paper, California’s HCBS system offers some of the most comprehensive care benefits in the country: All children eligible for nursing care are supposed to get the amount they need; parents can be paid to care for children whose needs prevent them from working full time. But in reality, families rarely mange to access the full benefits they’re eligible for because the paperwork requirements are so complex, and funding isn’t enough to secure quality home nursing. Also, many people who could benefit from HCBS programs are unaware they qualify or that they even exist.

As a parent of a ventilator-dependent child, managing the paperwork for the services my child receives is practically a full-time job. Many families just give up on receiving services, because even though the system appropriately assesses their child’s need for care, it doesn’t actually take responsibility for finding and training care providers. Recruiting nurses for in-home care is difficult because the HCBS system compensates home health workers at wages far below market rates. That makes it difficult to staff the hours that are approved and overburdens exhausted families, leading to unnecessary risks for the child.

This lack of investment in home support services for people with disabilities is shortsighted and expensive. When my son lived in an institutional setting, Medi-Cal paid more than a $1,000 a day for his care based on his medically intensive disabilities, no questions asked. But in order for him to leave the facility and receive nursing care at home, we had to apply for a paperwork-intensive waiver program. Providing my child with the nursing support he needs to live safely at home is the right thing from a civil rights standpoint, and it also saves a substantial amount of money. The cost for my son to live at home with a combination of in-home support services and home nursing care is roughly one third of what Medi-Cal paid for him to live in an institutional care setting.

So what does a functional, comprehensive system of home nursing care for medically complex children look like? Here are my suggestions, based on years of talking with other parents of children with disabilities, and personally experiencing the system’s shortfalls:

• Children should get the amount of nursing care they actually need. Home nursing care is generally provided in 40-hour increments, reflecting the work week of the nurses, but children’s medical care needs don’t go away on nights and weekends. Home nursing agencies consistently have a harder time staffing overnight and weekend shifts. The Medi-Cal rate structure needs to have flexibility to handle round–the-clock staffing.
• All children who need home nursing care should get referred for it. Hospitals routinely train parents to care for their children with complex medical interventions such as tracheostomies, feeding tubes, and catheterization. But parents can’t be expected to provide round-the-clock nursing care. Hospitals routinely discharge children who meet the medical criteria to have home nursing care without telling their families that nursing care is available. The infrastructure of care exists so that families don’t have to do it all themselves, but the system can’t work if medical providers don’t make appropriate referrals.
• Hospitals should ensure families with kids needing home nursing care are signed up for a Medi-Cal program to pay for it. In California, any child who needs home nursing care can get it, either through income-based Medi-Cal or a waiver program. Hospital social workers, discharge planners and care teams need to ensure that every child with intensive medical care needs is screened and referred to the appropriate HCBS programs to fund home nursing care as part of the discharge process. Private insurance never covers the amount of home nursing care that medically complex children need. These kids always need to be enrolled in Medi-Cal programs to ensure they get sufficient care.
• Home nursing care should be coordinated with nursing provided by the school district. Children with extensive medical needs may attend school with a nurse provided by the school district. But this can make it impossible for families to find a home nurse to cover school holidays and sick days. The lack of coordination between home nursing agencies and school districts creates gaps in care. A functional system of HCBS care for children needs to provide care wherever they are—whether they are at home or at school.
• Families must be able to choose their own providers. Nurses provide key care to medically complex children, but California has a shortage of nurses. Families with disabled children should be able to hire and train non-nurse providers to meet care needs they can’t find nurses to meet.
• Caregivers must be paid a living wage. Home care providers employed through in-home supportive services make close to minimum wage. Nurses working in home care make less than nurses working in any other part of the health care system. Home care is an essential part of the care infrastructure and needs to be compensated at fair wages in order to ensure a consistent workforce.
• Family caregivers should receive career and training opportunities. Families of disabled children provide high-level care to medically complex children, and their training and experience makes them valuable members of the formal health care system.

California’s system of HCBS supports is the best in the nation, but it can do better. The state needs a system of care that prioritizes the needs of people with disabilities, treats caregivers with respect and pays fair wages to in-home caregivers. Only then will we have a care infrastructure that truly supports community living for children with disabilities, and the caregivers that make it possible.

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.