Analysis: California Has the Best Programs for Kids with Complex Health Needs, But We Can Do Even Better

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California’s about to bail programs overboard as it works to keep the state afloat amidst a huge budget deficit. It’s a problem, and I’m concerned for some programs that help children with special health care needs.

But I wanted to take a moment to talk about something that I don’t often bring up. Overall, and in many specific instances, California has the best health care for children and youth with special health care needs. We have the best hospitals; we have the best and most expansive Medicaid program (known as Medi-Cal in California); and we have the best specialty programs to deliver services to kids at home. We provide more care to more kids in more effective ways — and we’re constantly improving.

In this season of budget cuts and constraints, it’s important to recognize and protect these programs that help tens of thousands of California children and families thrive.

It might seem strange for me to be praising the state so highly. As an advocate I spend a lot of time talking about how some of California’s programs aren’t working as well as they should be. I have high expectations for our health care system because I’ve seen what it looks like when things work smoothly. When the system works the way it’s supposed to, a child born with a complex medical condition is referred to specialty care, early intervention services, home health care and complex case management to help their family put all the pieces together. We don’t always hear about these cases because when the system works well, people typically don’t see any reason to talk about it.

That said, I’m not going to stop highlighting ways that California could do better. In the long run, it often leads to change. When families of kids with disabilities point out problems with the system, things often get fixed … eventually. State programs for children and youth with special health care needs have broad bipartisan support. No one in state government wants things to be dysfunctional, but the legislature has to balance meeting children’s needs with figuring out how to pay for it.

The author, Jennifer McLelland, advocating in Sacramento on behalf of children with disabilities. Photo courtesy of Jennifer McLelland.

I like to think of myself as a powerful advocate – when a program isn’t working, I can push regulators and legislators to fix it. Maybe I’m particularly good at advocacy. But I also live in a state where my medically complex child’s basic needs are met, and that gives me the time and ability to try and make things better.

My son has a tracheostomy (a surgically placed hole in his neck) and uses a ventilator (a machine that breathes for him) at night. He requires 24/7 skilled care to keep his airway open and maintain his breathing. I participate in online support groups with families from all over the United States. There are advocates in other states who have stories just as powerful as my family’s story – but they’re drowning. They don’t have time to advocate for change because they’re overwhelmed by their child’s unmet care needs due to a lack of supportive policies and programs in their states. Unlike me, they’re not trying to make improvements on programs that are 90 percent functional. They’re trying to build new programs from scratch.

In Home Supportive Services (IHSS) is an example of the kind of program that only exists in California. It’s an underrated crown jewel of our health care system for children and youth with special health care needs. In Home Supportive Services solves the problem of caregiving for disabled people who want to live in their own homes in the most obvious and simple way: Pay people to take care of other people. Parents can receive payment through the program to care for a minor child with intensive needs. This is so important because taking care of a medically fragile child often means that parents can’t keep a job. Is IHSS perfect? No, the pay rate is close to minimum wage, which makes it difficult for families to find outside caregivers. But it’s a massive program that makes life better for 75,000 children and their families statewide, and it does not exist anywhere else.

Is California really so much better than other states, or are other states just so much worse? It’s probably a little bit of both. As an advocate, I frequently criticize the Regional Center system that provides services to children and adults with developmental disabilities. Families struggle to get the care their children need because of funding and paperwork roadblocks. But it’s important to understand how revolutionary the Regional System is compared to what exists in other states.

The Lanterman Act, passed in 1976, provides people with developmental disabilities affirmative rights to access care in their own homes (not in institutions), to participate in the community, and to make choices about their own lives. The Lanterman Act is a big deal because it’s not just a set of policies in a state program, it’s a set of rights that can be legally enforced.

I’m also active in online support communities specific to California families. If there’s one thing parents of disabled kids love to do, it’s help each other figure out how to navigate our complicated, confusing systems. A question that frequently comes up is this: “We’re looking to move to another state that has the same services we’re getting here in California, but with lower taxes and a lower cost of living.” The answer is always the same — there is no other state that compares to California in terms of available services. Are there states with lower taxes? Of course — but taxes are how we pay for services, so it’s not possible to have a low-tax state with good services.

I know that Gov. Gavin Newson likes to compare our state’s policies with Florida and Texas’, for example. Let’s look at Medicaid waiver waitlists in these states. Medicaid waivers are programs allow people with disabilities to access to care at home. Many states don’t fund these programs, which means that there are years-long waitlists for care. Texas has 342,575 people on Medicaid waitlists; Florida has 77,123. Tens of thousands of people with disabilities in those states simply can’t get the care they need to live at home safely.

California knows how to run waiver programs without waitlists — our waiver program for people with developmental disabilities is fully funded and does not have a waitlist. But other California waiver programs do limit participation. Statewide, we have about 7,000 people on waiver waitlists, including for the waiver program that serves medically fragile children and adults. This is an example of how California is helping many people with disabilities but could be doing better. I want to see the state commit to permanently eliminating all waitlists for waivers.

There are other ways California can improve the way it delivers health care and services. Too many health care workers earn minimum wage, or close to it. And the programs that take care of disabled children are subject to funding cuts from budget swings. For example, a desperately needed rate increase for caregivers who provide direct services to people with developmental disabilities has been in the works for years but is now delayed until 2025 due to budget cuts.

Still, when I reflect on life for children with complex health needs, I think it’s important to give credit where credit is due. California makes life easier for children with disabilities and their families. Other states can learn a lot from us. And we can continue to do better.

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.

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