“They had no vendors who could actually work with a kid like Wesley…. The law is set up to keep people in their communities. But because appropriate services don’t exist, it does the opposite.”
Dad and Wesley walking through his residential campus, out of state, last winter.
By Jennifer Bush
As our community grapples with the loss of NCSA co-founder and Vice President Feda Alamliti, I’ve been trying to get to know her better. While we shared many Facebook friends, and our kids — just a couple years apart — shared spots at a similar end of the spectrum, I never met Feda. But she started work I’d like to continue. So I’ve been watching her videos.
Last night I watched this interview with Feda. And I was struck by what Feda wished for her son as he grew into adulthood: a house, a friend and something to do. So simple, basic, obvious. But I can’t get these words out of my head.
Because it’s what I, too, wish for my child. Not just when he becomes an adult, but now. And it is so hard to come by.
Wesley, my 13 year old, moved into his first group home just shy of his 11th birthday. We had been living day to day for so long, managing aggressive and self-injurious behaviors, extreme insomnia, obsessive eating and more. We were in crisis, but still, it took a year to get a placement. During that time, three homes, designated to care for the most severely affected kids, had rejected him because of his behaviors.
Wesley’s group home was just 20 minutes away, run by a loving and consistent staff. He was able to continue at his school, and we visited at least once a week. He did well there. And then, suddenly, the group home closed because they could no longer afford to keep it open. We were lucky to get a second placement, but this home had more difficulty keeping Wesley safe and happy. Then they too closed their doors. So in October 2019, Wesley moved back home.
We briefly felt whole again, with all four of us back under one roof. But the challenges were still there. Wesley would go long stretches with very little sleep. We would struggle to contain hours-long meltdowns. The regional center, the agency in CA designated to provide services to people with developmental disabilities, authorized plenty of in-home services, from respite to crisis intervention. But they had no vendors who could actually work with a kid like Wesley. Our case manager told us, literally, not to hold our breaths that we’d find another group home.
So we made the heartbreaking decision to send Wesley to a residential school out of state. CA closed the last of its institutions, called “developmental centers,” a few years ago, for good reason. But this left a void for kids like Wesley, who need more structure than a group home can provide. He needs 24/7 support. He needs consistency across environments and integrated medical and psychological care. He needs people who can keep him busy and engaged, as he gets bored easily. First and foremost, he needs people who can keep him safe. He needs, like Feda said, a house, a friend, and something to do.
Wesley’s first day at school earlier this year, age 13.
And this is where the work comes in. The state of California is failing to provide services to the people who need them most, despite the Lanterman Act, the law that compels it to. The state will not pay for out of state services without massive legal and administrative hoops because the law is set up to keep people in their communities. But because appropriate services don’t exist, it does the opposite. It is shameful that in a state as big and wealthy as ours, there is not one residential school for children and young adults like Wesley, let alone when they age out.
The Lanterman Act says that if services don’t exist they must create them. But all of the consequences of their failure to do so fall squarely on the profoundly disabled and their families. There are no consequences to the regional centers, Department of Development Services, or any other state entity. Other states have their own challenge, with decades-long waiting lists for services.
Feda Almaliti took on insurance companies to fight for our kids. And she won. Next up: our failing state system. What will you fight for?
Jennifer Bush is a writer and designer living in Silicon Valley. She blogged for several years about her family's experiences with autism diagnosis and early intervention at her blog Anybody Want a Peanut?
Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors.