By: Christine Stolle, JD at Applegate & Dillman Elder Law
Originally published in the Indiana Lawyer
In a world that values individual autonomy and the right to make personal choices, the decision-making process becomes a fundamental aspect of one's identity and dignity. However, for individuals with disabilities or cognitive impairments, navigating the complexities of decision-making can be difficult.
Traditionally, guardianship has been a common solution to provide support and protection for those deemed incapable of making decisions on their own. While guardianship serves a purpose in safeguarding vulnerable individuals, it can sometimes lead to unintended consequences, potentially diminishing their autonomy and independence.
Recognizing the need for a more empowering and inclusive approach, a paradigm shift has been underway – one that highlights the importance of Supported Decision Making (SDM). This innovative and person-centered alternative seeks to strike a balance between providing essential support and preserving the individual's right to self-determination.
Understanding Guardianship and Its Limitations
Guardianship is a legal arrangement where a court appoints a guardian to make decisions on behalf of an individual deemed unable to make informed choices due to a severe disability or cognitive impairment. The intent behind guardianship is to ensure the well-being and protection of vulnerable individuals, as the appointed guardian assumes the responsibility for making critical life decisions. These decisions may encompass medical treatments, financial matters, living arrangements, and other significant aspects of the person's life.
Potential Drawbacks of Guardianship
Despite its protective intent, guardianship can present significant challenges and drawbacks. One of the most pressing concerns is the potential loss of autonomy and personal agency experienced by the individual under guardianship. For example, even though almost all state laws require that guardianship only remove the rights that a person truly cannot exercise, research shows that over 90% of guardianships remove all the person’s rights regardless of his or her abilities and needs. Therefore, people under guardianship, especially those under overbroad or undue guardianships, can lose fundamental rights recognized by the Supreme Court. (Beadnell, 2021)
This can lead to a sense of diminished dignity and self-worth for the individual, as well as an inadvertent silencing of the individual's voice. Being subject to decisions made by another person can impact their self-esteem and may foster a perception of being treated as incapable or inferior.
The Need for Exploring Alternative Approaches
Statistics and case studies, such as the Virginia Supported Decision Making Pilot Project, have shed light on the need to explore alternative approaches to decision-making for individuals with disabilities. These studies have indicated that guardianship is often perceived as an all-or-nothing measure, rather than a tailored solution that considers the individual's capabilities and potential for autonomy. Additionally, there have been instances where individuals placed under guardianship have expressed dissatisfaction with the lack of involvement in decision-making processes concerning their own lives.
These revelations have prompted a growing call for embracing more person-centered approaches like Supported Decision Making, which uphold the individual's rights and preferences while providing the necessary support and accommodations.
What is Supported Decision Making (SDM)?
At its core, Supported Decision Making advocates for a fundamental truth: that every person, regardless of their cognitive abilities, possesses the right to be heard, respected, and actively engaged in their own life decisions. Indiana Code 29-3-14-1 defines supported decision making as "the process of supporting and accommodating an adult in the decision making process to make, communicate, and effectuate life decisions, without impeding the self-determination of the adult."
This less restrictive alternative challenges the notion of decision-making solely resting in the hands of a guardian, aiming instead to create a supportive network that encourages individuals to play an integral role in determining their path forward.
SDM is based on decades of research showing that people with disabilities who have more control over their lives and make more decisions have a better quality of life. Therefore, SDM can empower people with disabilities to avoid guardianship when it is unnecessary. (Beadnall, 2021)
Across the globe, examples of SDM in practice have illustrated its efficacy and positive impact on individuals with disabilities. In healthcare settings, SDM enables patients to actively participate in treatment decisions, leading to increased adherence to treatment plans and improved overall well-being. By involving the individual in their care choices, healthcare providers can better tailor treatments to their unique needs, preferences, and goals. (Beadnall, 2021)
In financial matters, SDM can be instrumental in empowering individuals to manage their finances, budget wisely, and make investments that align with their long-term objectives. With the guidance of supporters, individuals can build financial literacy and gain the confidence to make informed choices regarding their assets and resources. (Beadnall, 2021)
SDM also extends its reach to decisions about living arrangements, education, and other significant life choices. For example, one study found that people with disabilities who exercised more self-determination were more likely to live independently, have greater financial independence, and be employed at higher paying jobs. (Wehmeyer, M. & Palmer, S., 2003) By fostering a collaborative and supportive environment, SDM promotes a sense of self-worth and empowerment, enhancing the overall quality of life for those involved.
How Supported Decision Making Works as an Alternative to Guardianship
In many jurisdictions, SDM is viewed as a complement to existing legal frameworks, including guardianship and conservatorship laws. Instead of replacing traditional guardianship, SDM operates as an alternative option that aims to respect and uphold the autonomy and decision-making capacity of individuals with disabilities.
The process for establishing Supported Decision Making (SDM) typically involves several key steps, which may vary based on jurisdiction and individual circumstances. A general process for establishing SDM may look like this:
- Assessment of Decision Making Capacity: Assess the individual's decision-making capacity. This evaluation determines whether the person can understand, retain, and communicate information relevant to making informed decisions, and helps identify the level of support needed.
- Identifying Supporters: The next step is to identify a network of supporters. Supporters can include family members, friends, professionals, or advocates who are willing to assist the individual in the decision-making process. The individual should have the autonomy to choose their supporters based on trust and personal relationships.
- Defining Roles and Responsibilities: Clear roles and responsibilities for both the individual and their supporters should be established. The supporters' role is to provide assistance and support, respecting the individual's preferences and choices.
- Creating a Supported Decision Making Agreement: In some jurisdictions, it may be beneficial to create a formal Supported Decision-Making Agreement. This agreement outlines the roles and responsibilities of supporters and the individual's decision-making preferences. While not a legally binding document in most places, it can serve as a tool to communicate the individual's decision-making approach to others, such as healthcare providers or financial institutions.
- Engaging in Decision Making Processes: With the support of their chosen network, the individual actively participates in decision-making processes across various aspects of their life. The supporters assist by providing relevant information, explaining options, and helping the individual weigh pros and cons.
- Ongoing Support and Review: The process of Supported Decision Making is not static but evolves with the individual's changing needs and circumstances. Regular reviews and updates of the SDM approach ensure that it remains aligned with the person's preferences and capabilities.
It's important to remember that the process of establishing SDM is individualized and should reflect the unique needs and preferences of the person involved. Open communication, mutual trust, and ongoing support are crucial elements in creating an effective and empowering Supported Decision-Making arrangement.
How Attorneys Can Provide Guidance in Supportive Decision Making
In my practice, I’ve found success in presenting SDM as an alternative to guardianship when it’s appropriate. By helping my clients with capacity assessments, drafting SDM agreements and guiding conversations around important decisions, I can advocate for my client’s choices and mediate conflict or disagreement when it arises.
With this kind of legal support, individuals engaging in SDM can confidently make informed decisions and exercise their right to self-determination.
When Supported Decision Making Doesn’t Make Sense
In certain situations, Supported Decision Making (SDM) may not be the most suitable option for individuals with disabilities. When faced with severe cognitive impairments that hinder understanding and communication, or during emergency medical decisions requiring immediate action, SDM might not be feasible.
Additionally, if there is clear evidence of potential exploitation or harm within the support network, or if the individual lacks willing and suitable supporters, alternative protective measures like guardianship may be necessary. Decisions about the most appropriate approach should consider the individual's best interests, unique needs, and their ability to actively participate in the decision-making process.
Bringing Support Decision Making Into Your Practice
If you work in family law, disability law or guardianship law, incorporating Supported Decision Making (SDM) into your practice is an opportunity to foster a more inclusive and empowering environment for your clients. By embracing SDM, we can uphold the principles of autonomy, dignity, and self-determination for our clients with disabilities. It allows us to be advocates for our clients, ensuring that their preferences are respected and their voices are heard throughout the decision-making process.
Christine Stolle is an attorney at Applegate & Dillman Elder Law. The firm specializes in elder law and Life Care Planning, a holistic approach to deal with legal, financial, medical and emotional issues involved in growing older. The firm has offices in Indianapolis, Carmel and Zionsville. Find out more at www.applegate-dillman.com