From Toccoa to Macon to Savannah and points in between, the idea of supported decision-making as the best alternative to guardianship has turned people’s thinking 180 degrees. Supported decision-making is defined as a series of relationships, practices, arrangements and agreements designed to assist an individual with a disability to make and communicate decisions about their life to others.
In Georgia knowledge about supported decision-making is being spread through meetings, schools, agencies and by word of mouth throughout the state thanks to a project the Georgia Council on Developmental Disabilities (GCDD) funded with the Georgia Advocacy Office (GAO) and its Citizen Advocacy work, as well as through a partnership with the Center for Public Representation (CPR).
Now in its third year, the supported decision-making project continues to concentrate on raising public awareness about an alternative to guardianship. Guardianship, for decades, has been a near automatic intervention pathway selected when individuals with developmental disabilities reach adulthood to avoid the perceived risks of decision-making.
The project has taken the work in supported decision-making a step further by providing training on how individuals with developmental disabilities can use supported decision-making to take charge of their lives through methods other than guardianship and power-of-attorney. In addition, individuals with developmental disabilities can be paired with a citizen advocate for a one-on-one relationship to help both achieve a good life within their community.
“It has to start with the individual with the disability who wants supported decision-making,” explains Dana Lloyd, a protection and advocacy for individuals with developmental disabilities (PADD) advocate at GAO. “The individual must direct this from its inception to the result,” she added. Lloyd says so many people with developmental disabilities are seeking autonomy, choices and control – all of which supported decision-making provides.
Besides providing skill training for people with developmental disabilities, GAO also assists in citizen advocacy pairings and this new way of thinking that is led by the person with the disability. GAO helps the citizen advocate to ask, “What would it take to solve issues and challenges?”
For example, one young man with developmental disabilities had to undergo a medical procedure that would take six hours. Working together, GAO and the medical staff were able to prepare him through videos, a visit to the medical office and some time sitting in the chair where the procedure would take place. By the end of the work to prepare for the procedure, the medical staff began to question the status quo themselves and decided the procedure, for people with developmental disabilities, could be adjusted to two three-hour sessions. Lloyd said, “My goal for supported decision-making is to help you think differently.”
In another instance, a young man with developmental disabilities was told he was going to have to move residences and was handed a list of three addresses and told to pick one. When GAO came on the scene to assist, advocates talked with the head of the current residence and asked, “What would you do? How would you make the decision?” This helped the person understand that anyone choosing would like to see each residence, judge its proximity to work and church, etc.
In the past two years of the project, GAO has hosted or presented about supported decision-making at over 35 workshops and seminars around the state of Georgia. In addition, Lloyd says they presented at a National Symposium on supported decision-making in Baltimore; collaborated with the South Carolina Center for Independent Living, Able South Carolina and Disability Rights Florida to enhance mutual projects; and hosted a pre-conference workshop at the annual TASH conference in Phoenix. TASH an international leader in disability advocacy.
“We’ve even partnered with international experts to share information and learn from the growth of supported decision-making around the world,” Lloyd added.
One of the many organizations is the Center for Public Representation (CPR) in Washington, D.C. With funding from GCDD, and guidance from CPR, GAO has run a supported decision-making pilot since 2018.
The goals of the pilot are to:
- uphold the legal capacity of people with disabilities,
- disseminate knowledge of supported decision-making to stakeholders,
- utilize the structure of Citizen Advocacy relationships to develop supported decision-making arrangements, and
- prevent and overturn guardianships in favor of supported decision-making.
To continue its growth, GAO developed an advisory council composed of a diverse group of stakeholders, people with disabilities, parents, citizen advocates, a probate court judge, the directors of adult protective services, the Aging and Disability Resource Connection and the public guardian’s office. The council is instrumental in building a coalition of allies who are invested in ensuring supported decision-making is widely known as the first and preferred method of decision-making support for people with disabilities. Council representatives reside in Columbus, Atlanta, Athens, Fitzgerald and Roswell.
Lloyd says research shows that people with developmental disabilities who make their own decisions have better health and are more likely to be working which impacts a long-term deflection of guardianship. As the project enters year three, the focus will be on growing the network of people those with developmental disabilities can turn to for support with their decision-making