Key takeaways
- Supported decision-making is an alternative to guardianship or conservatorship that protects the autonomy of people with disabilities to make important choices about their lives with the help of trusted individuals.
- Nearly 85% of supported decision-making resources reviewed by UCLA experts were targeted toward caregivers and people with disabilities, with fewer resources for professionals who work with them.
- There were few tailored resources for people with dementia, neurological issues or serious mental illness, and youth transitioning from adolescence into adulthood with disabilities.
A California law designed to protect the autonomy of individuals with disabilities to make their own decisions may fall short of its intended goals due to insufficient online resources, according to a new report from the UCLA Center for Health Policy Research.
Supported decision-making (SDM) enables individuals with disabilities to select a trusted person or persons (often a family member or friend) to aid them in making important decisions about things like their health care and finances. The law (AB 1663) took effect Jan. 1, 2023, and it provides an alternative to guardianship (called conservatorship in California), which places full decision-making authority for an individual in someone else's hands.
Yet when UCLA researchers reviewed online resources about supported decision-making, they found some important gaps in the kinds of available information and tools. More than 60% of the resources were targeted toward adults 18–64 years old, with fewer resources designed for older adults (65 years and older) or younger people with disabilities.
They also found that while 44.1% of California households speak a language other than English in their home, only 21.4% of SDM resources reviewed were available in other languages. Additionally, few resources were intended for professionals in systems serving people with disabilities, such as health care (4.8%) or employment (1.2%).
"Imagine someone else deciding for you where you get to live, how to manage your money, or what medical care you need or want," said Kristen Choi, an associate professor at the UCLA School of Nursing and UCLA Fielding School of Public Health and the report's lead author. "Supported decision-making empowers individuals with disabilities to make — with the help of trusted supporters — these types of decisions. This is in stark contrast with conservatorship, a one-size-fits-all approach that removes autonomy."
Among other areas where the study found gaps were webpages that did not comply with Americans with Disabilities Act (ADA) standards for accessibility for people with vision impairment, language and word choice that was too difficult to understand for individuals with cognitive impairment, and a lack of cultural relevance that included provisions for values related to religion, ethnicity, traditions and communication styles. For example, templates for supported decision-making agreements rarely included options for deciders to specify their cultural values and preferences.
Although conservatorships are poorly tracked in the United States, estimates suggest that as many as 1 to 3 million Americans, including thousands of Californians, live under conservatorships. People with intellectual and developmental disabilities are at risk for being placed under conservatorship without sufficient consideration of alternatives, along with people who have dementia, neurological issues or serious mental illness. Youth with disabilities who are transitioning from adolescence into adulthood are vulnerable to being placed under a conservatorship at this pivotal life juncture, Choi said.
With SDM, individuals select chosen supporters to aid in decision-making, which can include being present in meetings where decisions are made, including legal hearings and medical appointments.
"Supported decision-making doesn't just improve social inclusion, it ensures full civil rights," said Choi, who is also an affiliate at the UCLA Center for Health Policy Research.
Choi's policy brief is part of her work as co-leader of a multidisciplinary team that received funding from the California State Council on Developmental Disabilities to develop and evaluate a digital resource library for supported decision-making. The first step was to evaluate 84 digital SDM resources identified from the California State Council on Developmental Disabilities website and other states with SDM legislation.
Resources were classified by audience, disability type, format, language, type and sector. Researchers assigned quality grades to each resource across six domains: accessibility, strengths-based approach (which emphasizes an individual's capabilities rather than what they may not be able to do), promoting autonomy, cultural relevance, language and readability.
Some of the report's key recommendations include:
- Develop targeted resources for high-risk populations. Create tailored SDM resources for individuals with dementia, neurological disorders (e.g., traumatic brain injury, cerebral palsy), serious mental illness (e.g., schizophrenia), and transition-age youth with disabilities, all of whom face a heightened risk of conservatorship.
- Improve linguistic accessibility. Develop resources in multiple languages that reflect California's diverse population, with a priority on Spanish and other languages widely used in the state.
- Improve accessibility. To accommodate various disabilities, ensure that resources are accessible through multiple formats, such as audio, visual (including alt text), and plain language (simplified syntax and grade-school vocabulary).
- Develop professional resources. Create materials for professionals in systems serving people with disabilities — such as health care, education and employment — to reduce the burden of self-advocacy and promote shared responsibility for SDM implementation.
"To help ensure that supported decision-making genuinely improves the lives of Californians with disabilities, we need accessible, high-quality resources that provide specific information on what SDM is, how it is to be used and how individuals can create formal SDM agreements," Choi said.
