OPINION | Expensive Out-of-State Placements Separate Developmentally Disabled Youth From Their Families

"I Want to Go Home" Advocacy Report

The following is an abbreviated and lightly edited chapter from a new systemic advocacy report published by the Office of the Developmental Disabilities Ombuds (DD Ombuds), "'I Want to Go Home': Reevaluating DDA's Children's Services to Prevent Hospitalization and Out-of-State Placement." In 2017, the DD Ombuds was created by the Washington State Legislature to improve the lives of persons with developmental disabilities. The DD Ombuds monitors services provided to people with developmental disabilities, reviews facilities and residences where services are provided, resolves complaints about services, and issues reports on systemic issues within the service system. To read the complete report, visit the DD Ombuds website.

It's a Monday afternoon in June. It's rainy in Washington, where Brie, Michael's mom, is, and Michael says it's boiling hot at his out-of-state placement. Michael and Brie are on their weekly 20-minute Zoom call. Michael is excitedly telling his mom about how he went on a field trip to the dinosaur museum, just finished nine books in seven days, and is looking forward to baking his favorite cake together when he visits in August: Brooklyn Blackout cake. Michael's face shifts, and he raises his arms to cover his head. Brie stops and asks him, "Your face is really sad all of a sudden, is there something that's making you feel sad?" Michael peeks out from behind his arm and whispers, "I miss you, Mom. I want to go back home."

It has been 15 months since Michael left Washington to live at an out-of-state placement. After a police encounter when Michael was almost arrested, Brie asked Michael's school district for help locating an out-of-state school. Brie says even though Michael had about 20 police interactions in the past, this was the only time he was threatened with an arrest. Brie attributes this to her family being white and outwardly passing as having class privilege. There were no services for Michael in Washington, so an out-of-state school that was 2,000 miles away and cost $300,000 dollars a year was the only place he could go. Because Washington does not have enough services for developmentally disabled youth, families sometimes make a heartbreaking decision: to send their child to an out-of-state placement. Recently, the number of youth sent to out-of-state placements has increased, which worries families and advocates. Then, when youth are ready to come home, it is still difficult for family members to ensure they can get the services they need in Washington. By not investing the money spent on out-of-state placements in Washington, families say youth with intellectual and developmental disabilities are funneled into expensive out-of-state schools and institutions, which separates their families.

After seeing Michael's tears, Brie takes a deep breath. She begins to tell Michael how, after he left, she sat in his room and held his stuffed animals; she was giving his pets his love every day. Michael smiles widely and tells Brie, "I want to chain myself around the fence post, so they can't haul me away from the house." Brie looks back at Michael through the computer screen, smiles slightly, and exhales. "I know, buddy. Nothing about this is going to be forever."

In 2020—2021, Washington school districts sent 80 students to out-of-state placements. In 2021—2022, 89 students were sent to out-of-state schools or residential facilities, costing taxpayers $16.6 million. After hearing this number, family members felt outraged, especially after not being able to access the services they needed at home. What matters more than the cost is that youth at out-of-state placements don't want to be there, they want to be home.

Furthermore, Brie worries about the conditions at Michael's school. Brie snuck the books Michael read last week into his luggage; books and music are against the school's rules because they encourage "behaviors." After Michael arrived at the out-of-state school, Brie says Michael lost weight because school staff would not make him sensory-friendly food and he was only allowed to eat what staff gave him.

Brie explains, "I am in contact with the school at least a couple times a week. I make the psychiatrist call me. I make the pediatrician call me. I found out that's not normal, and they were annoyed with me." During a meeting with Michael's support team at the school, a doctor told Brie, "Well, once they live here, we take care of them, and the parents don't participate." Brie replied, "Well, he's my son, so anything you do with him, you're going to need to call me. He lives with you, but he is my son."

This is not even the first time Michael left Washington. Three or four years ago, Michael was suicidal, and he left Washington because no psychiatric services would treat him because of his autism. But Brie says bringing Michael home was hard. Due to rules and policy, Michael could not access any Developmental Disabilities Administration (DDA) services he was receiving before leaving Washington and still needed. Brie says, "That's the first time Washington failed him."

Because they are at risk of losing their DDA services, it is hard for youth at out-of-state placements to come home with a continuity of care. First, if a youth's out-of-state placement is insurance-funded, they are living at a medical facility. By living in an insurance-funded medical facility, a youth waives their right to live in the community and to their DDA services. However, if the funding for an out-of-state placement is coming from a child's school district, they are still living in the community and can keep their services. The second way a youth can lose their DDA services is if DDA does not consider them a Washington resident. If a youth loses their DDA services before returning to Washington, they must go through the onboarding process all over again. When youth cannot receive a continuity of care to ensure a successful transition home, they are unable to access services; the same thing that causes out-of-state placements. After all the therapy Michael received at the out-of-state school, Brie says, "He had nothing. He came home with nothing."

By not investing in Washington services that give meaningful choice to youth and their families, the upward trend in youth who are placed at out-of-state facilities could continue to increase, along with all the harm it causes. Washington State needs to reinvest and reevaluate how it allocates money spent on out-of-state placements so youth can receive care at home.

As Brie tells Michael what they will do together when he visits Washington in August, a door opens, and it is the end of their 20 minutes together. A muffled voice tells them Michael's time is up. Brie rushes to tell him, "Michael, you seem extra sad today, if you're feeling really sad, ask to call me again, do you promise?" He nods quickly and replies with an abrupt "Goodbye, Mom." The computer screen goes dark.

"So, for 15 months, 20 minutes a week and two home visits. That's all we get."

The South Seattle Emerald is committed to holding space for a variety of viewpoints within our community, with the understanding that differing perspectives do not negate mutual respect amongst community members.

The opinions, beliefs, and viewpoints expressed by the contributors on this website do not necessarily reflect the opinions, beliefs, and viewpoints of the Emerald or official policies of the Emerald.

Featured Image: Photo by Zwiebackesser/Shutterstock.com.