Two years ago, my son James was invited to speak at the Department of Justice in Washington, D.C. at an event celebrating the 25th anniversary of Olmstead v. L.C.
Olmstead v. L.C. is a 1999 Supreme Court case that said people with disabilities have a right to receive care in their own homes and live in the community, rather than being forced to live in segregated institutional care facilities.
Our family got to meet with disability rights advocates and civil rights attorneys to talk about how the decision made it possible for kids like James to life happy, healthy lives at home with their families.
We also talked about the challenges we faced in bringing James home from the hospital — he spent most of the first year of his life in a nursing home because the system that was supposed to help us care for him at home simply didn’t work.
But on June 18, the Department of Justice issued a memorandum reinterpreting the Olmstead decision, arguing that it doesn’t create “a broad legal obligation to offer home- and community-based services,” according to the American Bar Association. “Although not binding on courts and without the force of law, the memo is likely to guide Executive Branch agencies, shaping federal enforcement priorities and substantially narrowing the government’s approach to investigations” related to disability issues, the association wrote in a July analysis.
As a mother of a disabled child, I’m terrified of what this could mean for kids like my son.
As a Californian, I want my state to step up to protect the right for kids with disabilities to get care in their own homes. California needs explicit, enforceable state laws that codify the Olmstead rights and make it clear that kids with disabilities belong at home with their families.
What does the Supreme Court decision mean for kids like James?
Today, my son James is an Olmstead success story, but that wasn’t always the case.
James has a rare genetic syndrome that affects cartilage growth. Doctors gave James a tracheostomy (a surgically placed hole in his neck, held open by a plastic tube) right after he was born so that he could breathe.
For a child with a tracheostomy, the biggest medical concern is keeping the airway open. The tiny plastic tube can become clogged with secretions, causing the person to die because they can’t breathe. The hospital told us that James required round-the-clock nursing care so that a competent person would be able to suction and change his tracheostomy tube in order to keep him alive. The only place that care was available was in a pediatric nursing home 200 miles away from where we lived in rural Fresno County.
Institutional care met his medical care needs — but it neglected his most basic human needs.
What do modern institutions look like?
When this happened to our family, I didn’t have the vocabulary to know that my son was institutionalized. I didn’t know what that word meant. I thought that “institutions” meant some big scary brick building depicted in black and white pictures from the past.
The place where my son lived was clean and nice. It had a playroom with toys and a swing set in the back. It had bright colored murals and on the walls. The staff loved the kids — but it was still their job, and they clocked out at the end of every shift. They weren’t family. It wasn’t a home.
Institutionalization for children today isn’t a thing of the past. It happens in specialized pediatric nursing homes like the one where James lived. Kids who are especially medically fragile can end up living in acute care hospital ICUs for years at a time.
Even when institutional care meets a child’s medical care needs on paper, it can never provide the kind of loving family care that lets a kid grow up to be what they want to be.
Medi-Cal, the states’ health plan that serves many children with disabilities, as well as low-income families, automatically pays for care that is provided in hospitals and nursing homes. Care at home is considered optional. That means families have to deal with complicated paperwork and waitlists to access care at home, and it means that care at home is always more vulnerable to budget cuts.
A better option
Community integration for kids with disabilities doesn’t look like anything special — it just looks like life. Today James is 15. He’s about to start his sophomore year of high school. As I write this, he’s sitting next to me at the kitchen table working on his summer English reading assignment (“Farenheit 451,” which I’m glad to know is still in the curriculum).
Medi-Cal pays for a nurse who comes to our house every night to manage James’ ventilator. When he rolls over in his sleep and disconnects his ventilator tubes, the nurse troubleshoots the machine’s alarms and reconnects him.
James attends school with a nurse who manages his breathing so he can focus on learning. When his tracheostomy tube gets knocked out by a stray ball during PE class, the nurse puts it back in so he can breathe.
The life that James is living today is possible because of the Olmstead decision.
How can California fight back?
As an official legal issue, Trump’s Department of Justice can’t overturn a Supreme Court case. Olmstead is still the law of the land … for now.
The Department of Justice’s memo isn’t the only threat to people with disabilities getting access to care at home. The Olmstead decision was based on Section 504 of the Rehabilitation Act, a 1973 law that prohibits discrimination based on disability and establishes a right to community integration. Three states (Alaska, Florida and Texas) are currently suing in federal court to overturn Section 504 using the same deeply flawed legal logic.
The Supreme Court previously upheld Section 504, when it was challenged in 1999, and it has “been the policy of the United States for decades,” said Claudia Center, legal director at the Disability Rights Education and Defense Fund. “Californians cannot go back. We need state legislation that confirms that California nondiscrimination law includes the integration mandate and additional disability rights protections.”
Legislators have the tools to protect Californians with disabilities from this unprecedented attack on disability rights. When our civil rights are under attack at the federal level, we can pass state laws that make our moral values clear.
When the Supreme Court overturned Roe v. Wade, abortion remained legal in California because the California laws carved out a right to abortion that still existed after the federal right dissolved.
California can do the same thing for disability rights by writing Olmstead rights into California law and establishing a clear and enforceable right to care in the community.
Under the Lanterman Act, Californians with developmental disabilities (primarily intellectual disabilities diagnosed before age 18) have a right to receive care in community settings to the maximum extent possible. The Lanterman Act protects care at home — but it doesn’t protect everyone. It doesn’t apply to children whose disability is physical in nature, or adults who become disabled at any point after their 18th birthday. The legislature can extend those same rights across the disability spectrum.
If the federal government is going to attack Olmstead rights, then California needs to step up to defend community living.
Jennifer McLelland writes about disability rights and health equity for the California Health Report.
