How My First Capitol Rally Encouraged Me to Be Active in Legislative Advocacy
By Courtney Criss, Leadership and Advocacy Manager
At the time I was born, it was not uncommon (and might have been very common) for doctors to recommend that parents place their baby or young child with an intellectual or developmental disability (IDD) in an institution. I don’t doubt they loved their children and probably visited as often as they could. There were few alternatives at the time to institutionalization, with little to no resources and assistance to raise children with IDD in the family home. Children of this generation did not receive in-home therapies like mine do. They did not have the right to a public education before the Individuals with Disabilities Education Act (IDEA) of 1975, which allowed all children to attend school and introduced the Individualized Education Program (IEP). There was no respite care or personal care in the home. The Division of Rehabilitation Vocational services (DVR), which provides training, job coaches, and job placements, was more aimed towards physical disabilities. The Americans with Disabilities Act (ADA) was not even passed until 1990.
I am not familiar with how institutions or Rehabilitation Housing Centers (RHCs) treat and care for individuals with IDD. I have not researched it on my own. I have heard what self-advocates have said about their experiences living in institutions. A self-advocate named Mike reported to King 5 that they treated him like a dog. Another self-advocate named Ivonova Smith told the crowd at the Rally on January 25th that she could not have married and had children if she was still in an institution.
I believe the concept of institutionalization came from the ableist and eugenicist attitudes of the 19th and 20th centuries. It came from harmful ideas about what people with IDD can and cannot do, how and where people with IDD should live, and how people with IDD should interact with the larger community. Since their inception, institutions have had a documented history of violence, abuse, and neglect. When the community is not involved and privacy reigns, abuse can flourish. Just like today, when children are 100% kept in special education classrooms away from general education kids and teachers, abuse including restraint and isolation can occur. It is much less likely to occur when a student with IDD is educated alongside his general education peers and included in the general education environment. If an individual with IDD is not living in an institutional setting but in the community, abuse may still occur but it is logical to think it would be less with more exposure to and more participation in the community. With proper education and communication devices if needed, individuals can express themselves and report abuse much easier than they could if living in an institution.
Today, there are 500 individuals with IDD living in state institutions in Washington. This is a relatively low number compared to the number of individuals with IDD living in Washington.
I had never been to a rally before I went to the Supported Living rally on Wednesday, January 25th in Olympia. So when self-advocates and the advisor for People First were organizing a day trip to Olympia, I made sure I could join. I’ve heard it has been difficult to engage folks in advocacy and general activities as we are coming out of the pandemic. Only 5 of us drove to Olympia. It was kind of a last minute idea to go so we did not have appointments with any legislators. I was surprised at how open the capitol building is; I had expected x-ray machines and bag searches. The rally was held outside on the capitol steps. Ivanova Smith was the M.C. She introduced a variety of speakers from state representatives and senators to self-advocates to caregivers and interspersed with leading chants of “What do we want?- Community living! When do we want it?- Now!”
As a mother of young children with Down syndrome (they are 3 and 9), I am still learning about the IDD community and past history. At least three speakers with IDD who have lived in institutions shared their experiences of before and after. They spoke of the freedom they have now to go shopping, attend church and sporting events, hang out with friends, date significant others, and eat what they want. These are activities and choices that people without disabilities take for granted. People with disabilities can live and thrive in the community with proper supports including communication devices, wheelchairs, caregivers, nurses, and home and community based services.
Unfortunately, there are no immediate plans to close Rainier, Fircrest, or the other two DSHS institutions in Washington State. Before institutions can close, the 500 individuals currently residing in them will first need to be transitioned to supported living in the community. There are a few proposed bills this session to bolster supported living for people with IDD. Two of these proposed bills in this legislative session can further the goal of closing institutions and providing housing in the community. HB1265/SB5302 proposes a property tax exemption for nonprofit adult family homes that serve people with IDD. HB1654/SB5506 proposes the creation of “enhanced behavior support homes” for individuals with IDD who have higher support needs. These homes are designed to be in the community and have no more than 4 individuals in each home with 24 hour supervision. At present, there is no timeline to close the institutions and it is not clear if they will ever be closed.
If you want to comment on these or any bill, you can click a button on the right of “Bill Status-at-a-Glance” called “Comment on this bill.” The Comment button will lead you to a page where you enter your name, address, and whether you support or oppose (or are neutral) about this bill. You can also enter in comments up to 5000 words!
The Arc of Washington State hosts a Zoom session every Wednesday at 10am about this year’s proposed bills. Advocacy Days are organized by topic. Feb. 15 and 22nd are about housing. April 5th will also focus specifically on RHCs. These sessions are recorded so you can watch past sessions. You can register here: Advocacy Days – Washington State (arcwa.org).
I have to admit that legislative advocacy was overwhelming to me before I started working at The Arc. The Arc of Washington’s website organizes the information well. The Arc of Snohomish County can also explain bills to you. If you have any questions about proposed bills and how you can voice your concerns or opinions, please contact us: Jake@arcsno.org, Rachel@arcsno.org or myself, Courtney@arcsno.org.
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Courtney Criss is the Leadership and Advocacy Manager at The Arc of Snohomish County. She is also a wife and mother of four children, two of which have Down syndrome. She was born and raised in the Seattle area and dreams of an inclusive society for all. Opinions expressed in this article are her own and are not attributed to The Arc of Snohomish County.