Building Advocacy in Transition Systems, a newer grant that expanded upon the SC Supported Decision-Making Project, a former grant project that was funded from 2016-2019.
Type of practice
Promising practice (practice is proven to achieve outcomes)
Areas of Emphasis
Quality Assurance and training in self-advocacy, leadership, and self-determination
Population of focus
People with intellectual and developmental disabilities
Families of people with ID/DD
Caregivers of people with ID/DD
Supporting and Educating Communities
Interagency Collaboration and Coordination
Coordination with Related Councils, Committees, and Programs
Coalition Development and Citizen Participation (self-advocacy training, educating policymakers, and citizen leadership skills)
With the support of the SC Developmental Disabilities Council (SCDDC), the SC Supported Decision-Making Project (SC SDM Project) became our state’s first statewide capacity-building initiative on Supported Decision-Making and alternatives to guardianship. In 2020, the SC SDM Project proposed a brand-new initiative, Building Advocacy in Transition Systems (BATS).
The intention of BATS is in efforts centered on supporting educators and medical practitioners to better fulfill their roles in supporting the autonomy and independence of young adults with intellectual and developmental disabilities. Project team members created and disseminated resources and training materials to teachers and medical providers across the state and piloted a youth transition program with Prisma Health’s Developmental/Behavioral Pediatric Department in Greenville, SC. BATS partners created an “age of majority” resource for teachers to use during IEP process to discuss transition and decision-making authority to point families toward resources that promote independence. A “Stop, Look, and Listen” tool was created to offer guidance, resources, and modification ideas to teachers to better leverage the IEP process to support and address potential adult decision-making concerns. This tool was adapted for medical professionals to use when planning for patient transition from pediatric to adult medical care. By educating professionals who are the primary source of information for youth with disabilities and their families, alongside the families themselves, we can create educated advocates within these systems that champion choice, autonomy, and full community inclusion.
Age of majority, like many aspects of special education, runs the risk of being a compliance-driven enterprise. In SC, like most states, districts can be compliant with IDEA without ever mentioning a word about adult decision-making support, let alone meaningfully planning for the implementation of less restrictive alternatives to guardianship as part of the IEP process. With the implementation of the Adult Students with Disabilities Educational Rights Consent Act, effective in 2016, limited procedural guidance has been provided to educators. As a result, teachers are springing to guardianship recommendations as they strive to maintain IDEA compliance. Unnecessary guardianship recommendations result in unnecessary guardianships being sought. To change this, School districts need to have guidance to address self-determination for youth and young adults by having more intentional conversations related to adult decision-making support.
BATS is driven by capacity building, facilitating the use of tools and innovative mechanisms to guide the practice of education and medical professionals to not only inform individuals with developmental disabilities about their rights, but to actively create opportunities for those with disabilities to practice decision making and independent living skills. The intended impact of the SC Supported Decision-Making Project has always been two-fold: (a) to give individuals with disabilities and their families more resources and information to promote autonomy and independence and (b) to effectively support the professionals that serve those families to foster autonomy and independence within the systems they operate. Ultimately, the goal is to see less families feel the need to resort to guardianship or unnecessary restrictions on personal autonomy.
While Building Advocacy in Transition Systems is a newer grant project, the foundation was well established through the SC Supported Decision-Making Project. The SC Supported Decision-Making Project created manuals for families, services providers, attorneys, and medical providers, as well as some videos that explained the benefits of Supported Decision Making. It developed a centralized website to house these resources that has been viewed thousands of times since its creation. The Project has trained many families to increase their understanding of Supported Decision Making and alternatives to guardianship; educated professionals about the different options available; and provided individual counseling to families about how to promote independence for their family member with a disability. SC’s Supported Decision-Making work has been recognized and celebrated at the national level. Despite this, a need persists to transform the systems that continue to push guardianship as the sole solution for supporting individuals with disabilities in adulthood.
Impact (or impact-to-date) of the project/activity for people with ID/DD and their families
In an effort to build collective power and capitalize on the #Freebritney movement momentum, BATS staff reached out to several state partners to determine if there was interest in a statewide Supported Decision-Making coalition being developed. Several key state agencies responded, and the coalition was formed. These agencies were the South Carolina Department of Education, Family Connection of South Carolina, Disability Rights South Carolina, Arc of South Carolina, University of South Carolina, Project Search, South Carolina Developmental Disabilities Council, and South Carolina Legal Services. Past and present work was discussed as a group, and efforts from other agencies were discussed as relate to Supported Decision-Making. All meeting participants expressed an interest in ongoing meetings, and this collaborative effort continues, and assists BATS in disseminating resources and working together for ongoing systems change and sustainability.
Prisma Hospital, a large network of hospitals within the state of South Carolina, has built the transition policy statement and the Stop, Look, and Listen: Transition to Adult Healthcare tool into their computer systems, making it readily accessible for medical providers and their patients. BATS staff worked diligently on developing the tool and transition policy statement. These changes enable individuals with disabilities to begin the transition planning process earlier so they can be better prepared to transition from a pediatric to an adult health care provider. Going forward, the goal is for this program and tool to be shared across medical systems.
What were things like BEFORE you/your family/partner/community participated in the project/activity?
In general, the push was to guardianship rather than exploring alternative options to guardianship like healthcare powers of attorney or supported decision-making agreements.
What are things like AFTER you/family/partner/community participated in the project/activity?
Able SC has consulted with several parents over the last few years who are considering guardianship for their children. One was considering guardianship for her daughter due to having trouble getting the school to provide information about her daughter’s education. After consulting with Able SC, the mother realized that a Release of Information would solve the problem without infringing on her daughter’s rights. From there, Able SC and Family Connection met with the mother and daughter and went over the Supported Decision-Making agreement, which the family utilized.
An Education and Transition Advocate (ETA) spoke with a parent from Richland County who was seeking guidance on how to obtain guardianship based on a recommendation from a transition specialist. A teacher, who had previously attended a conference on SDM, reached out to the ETA and connected the parent to her. ETA learned about some of the parent’s concerns and explained SDM and some less restrictive alternatives. The parent ended the conversation with confidence that guardianship was not necessary and plans to complete the Stop, Look, and Listen tool series to gauge where additional support may be needed.
What was most beneficial to you/family/partner/community from participating in this project or practice?
The community, and people with intellectual and developmental disabilities are benefitting from this project in that the medical and education sectors are being included in learning about alternatives to guardianship and aspects of transition that may not be so obvious to the untrained or unaware eye. Families are being educated on options for protecting and looking out for their loved one that isn’t guardianship and preserves their loved one’s autonomy and self-determination.
Summary statement that highlights the role of the DD Council in achieving positive outcomes through this project.
The SC DD Council saw an important need for the Supported Decision-Making project several years ago and funded this nationally recognized program. When the three-year grant period was complete, the grantee sought to expand upon what was completed during that program and identified key areas in which change could be facilitated. The DD Council is currently supporting the expansion of this in BATS. The DD Council Program Manager participates in the Supported Decision-Making Coalition and provides thoughtful comment and suggestions and was part of the development of the coalition position statement.
Name: Lori Rodgers
Phone: (803) 734-0392
Council location: South Carolina