Exploring the Self-Determination Program in The United States
Born from the desire of disability advocates and community members to create a more person-centered approach, self-determination programs are gaining traction in California. These programs offer a way for disabled community members to take back their agency and make their own choices with the support of their care team and families.
What is the Self-Determination Program?
The Self-Determination Program (SDP) is an alternative option for people with disabilities to choose personalized support and care. Disabled individuals are provided a budget and encouraged to use their own voice, take back agency, and decide the direction of their life with support from a team. Being self-determined empowers disabled people to make choices that offer more joy in recreation, meet needs for personal safety, and adjust accommodation on an individual basis.
SDP encourages individuals and families to tap into collective creativity and “think outside the box” on what life the person wants to lead. With the support of family, care teams, and guidance from an expert, individuals craft their own person-centered plan together with their care team and family.
This progressive approach to person-centered care can directly improve the quality of life for disabled people.
Self-determination stimulates discussion on old ideas of what care and support mean within the community. Disabled advocates have garnered momentum in support of self-determination programs as an empowering alternative that honors their needs with informed, person-centered care.
Tim Jin, a board member at Ability Central, recently went through the self-determination process. He communicates primarily through an augmentative and alternative communication (AAC) device, typing on a tablet with his toes to answer questions. For Tim, SDP has been a welcome alternative for accommodation.
“For the past 20 years, I needed to get permission from an agency for staff to take me to family gatherings, going to concerts, etc.,” says Tim. “Everything needed to be preplanned and approved due to overtime and the company's policy of who can drive me. Also, I got many random staff to help me throughout my day. It felt very institutionalized even in my own home. Now that I’m in self-determination, I feel that my life is ordinary.
“No doubt, I will never be going back to the broken (traditional) system again,” he continued. “I should have started sooner!”
Origins of the Self-Determination Movement in the US
The origins of self-determination for disabled individuals began in the early 1990s as a motion of advocacy for people with intellectual disabilities. As the understanding of psychology expanded in the 20th century, the application of self-determination reached social services. Alongside the field of psychology’s growing understanding, the momentum of disability advocacy made way for a revolutionary program.
Historically, people with disabilities have not always been presented with opportunities to select where they live, what activities they participate in, or choose a job that’s right for them. People around the world have challenged the notion that disabled people need to be directed without their input or consent. A popular phrase among disability advocates is “Nothing about us, without us.” This changes the focus, to enable people toward making their own choices.
As for all people, those with disabilities have the inherent right to be able to make decisions and have agency over their lives.
Self-Advocacy and Self-Determination: Moving Together
Self-advocacy and self-determination as movements lend strength within disabled communities. People empowered to make their own choices and seek agency over how they integrate into the world can work together to see change.
Advocates have focused on using teaching and skill-sharing, providing opportunities to use and practice self-determined skills, and providing support and accommodations so people can be successful. If people are supported in setting their goals and making effective, meaningful choices, their quality of life improves.
For Matt and Shannon Cherry, parents of twins with autism, SDP offered a welcome alternative to programs offered at their regional center. The Cherry family was a part of the pilot program in California in 2019.
“There were a lot of unknowns, and we worked through them,” Shannon says. “I am excited for our daughter’s opportunities in the future.”
Opportunity and support also play a role in this process. People naturally rely on one another and technology to support their day-to-day lives. Sometimes, it’s as simple as identifying what sorts of support a disabled person needs to achieve their goals. Whether it be a housing goal, a job opportunity, or implementing a communication accommodation, self-determination programs give people with disabilities the power of choice with the support they need to succeed in their dreams for the future.
Learn more about self-determination by exploring our 4-part Self-Determination Series.