Impact Feature Issue on Self-Determination and Supported Decision-Making for People with Intellectual, Developmental, and Other Disabilities

For students without disabilities, the years leading to high school graduation are a time for making connections and learning life skills. They will take part in programs and meet partners and peers that will help them through college and their careers. Typically, students can count on their schools’ guidance department, their families’ knowledge and experience, internships, and other opportunities to help them develop and implement plans for their future (Gustin, 2014). 

For students with disabilities and their families, however, this can be a period of confusion and frustration where they become overwhelmed by a near-constant need to identify service providers, find funding streams, and set-up supports. Worse, systems serving people with disabilities often operate in “silos,” focused only on individual “deficits” and their available services, unaware of or not working with other potential providers. As a result, they may fail to identify or enhance individual strengths and unwittingly give conflicting advice or duplicate efforts (Martinis & Gustin, 2017a,c). Such a “fragmented system of services within high schools and adult services” does not prepare youths for the future (Katsiyannis, deFur, & Conderman, 1998, p. 55).

Consequently, students with disabilities and their families can spend so much time trying to identify what services are available and who can provide them, that they do not have a meaningful opportunity to plan for and receive the supports they need to lead full and independent lives (Gustin & Martinis, 2016). This contributes to a societal view that people with disabilities cannot “take care of themselves” and need guardians to secure services and make decisions for them (e.g., Kapp, 1999).   

Foundations of the Successful Transitions Program

In Vermont, Fair Haven Union High School, the Division of Vocational Rehabilitation, and Community Care Network (the Designated Agency serving people with intellectual and developmental disabilities in Rutland County, Vermont) have joined together to develop and implement the Successful Transitions Program. The program focuses on increasing communication, coordination, and collaboration between students, families, and the three agencies to improve support planning and provision and enhance outcomes. As a result, and as shown by data collected by the program: 1) Students identify and receive the supports they need to lead their best, most independent lives, and 2) agencies work more effectively and efficiently, conserving resources and improving student and program outcomes.

Through the Successful Transitions Program, student Harold Dexter created Dream Boards, working with his supporters and the program partners to articulate his hopes, goals, strengths and challenges – sometimes surprising even his parents.

The Successful Transitions Program is based on the Culture of Coordinated Support Model (CCS) (Gustin & Martinis, 2016), which has been recognized as a national promising practice (Shogren, Wehmeyer, Martinis, & Blanck, 2018). In CCS, people with disabilities and the agencies supporting them overcome the problems of “silo systems” by collaborating and coordinating their efforts. To do so, they establish interagency procedures, hold joint planning meetings, and jointly develop and implement individualized support plans with consistent, cross-system goals and supports based on the person’s abilities and interests (Martinis & Gustin, 2017a,c).

Supported Decision-Making (SDM) is a key component of CCS because most, if not all, of the services and supports used by people with disabilities require forms of SDM (Martinis & Gustin, 2017c). For example, the student-led Individualized Education Program (IEP) in special education services, Informed Choice in vocational rehabilitation services, informed consent in health care, and person-centered planning in Medicaid waivers and other services all involve professionals helping people with disabilities understand the situations and choices they face so they can make their own decisions about their goals, objectives, and supports – the very definition of SDM (Martinis & Gustin, 2017c). 

Accordingly, CCS uses SDM as a unifying “common tongue” for people and agencies as they hold joint planning meetings and create and implement individualized, cross-system support plans. This is particularly important for the agencies in the Successful Transitions Program because special education programs, vocational rehabilitation agencies, and person-centered planning providers all must, broadly speaking, provide education, employment, and independent living supports to people with disabilities (e.g., 20 U.S.C. § 1400(d)(1)(A) [Special Education]; 42 C.F.R. § 361.48 [Vocational Rehabilitation]; Center for Medicare and Medicaid Services, 2014 [Person Centered Planning]). In a “silo system,” this can lead to redundancies and contradictory services as each agency attempts to provide supports in areas also addressed by others (Gustin & Martinis, 2016; Martinis & Gustin, 2017a). 

The Successful Transitions Program avoids these pitfalls and empowers innovation and sharing of information, resources, and responsibilities. Because the three agencies hold joint planning meetings and jointly develop and implement individualized support plans, each is aware of and works to advance the same goals as the others. However, instead of each agency attempting to provide all education, employment, and independent living supports to the student, they collaborate and coordinate with one another, focusing on what they do best, and supplement, rather than duplicate or contradict, the supports provided by the others. Thus, Fair Haven Union High School can focus on education, the Division of Vocational Rehabilitation on employment, and Community Care Network on independent living, and the agencies will communicate regularly to ensure that supports are provided in the most effective and efficient way.  

Dream, Dig, and Develop

The partners in the Successful Transitions Program have created a three-stage process to help students identify their abilities, interests, goals, and objectives, and create, implement, and monitor support plans. They call this process Dream, Dig, and Develop.  

As a result of the preferences he stated in the Dream-Dig-Develop stages, Harold was provided with a work experience at a collectibles shop where he prepared window displays, and discovered and honed strengths and skills.

The first stage – Dream - empowers students to identify and communicate their personal interests and goals by creating Dream Boards. The agencies support the students to write, draw on, or attach photographs and other things to a piece of paper in ways that represent their hopes and dreams for the future (Martinis & Gustin, 2017b). The students are encouraged to think broadly and identify the people and activities that would be part of their ideal lives – including where and how they want to live and work, the types of people they want to be with, and the experiences they want to have.

With their Dream Boards, students can communicate highly individualized preferences, interests, and goals through images that they may not be able to explain or be comfortable saying in words. This enables them to play a lead role in the support planning process and shape their plans and supports to match their personal strengths, interests, and visions for themselves (Martinis & Gustin, 2017b).

In the second stage – Dig – the students, their families, and the three agencies discuss the Dream Boards to learn about the students’ future goals and discover the personal values and characteristics beneath the surface of their dreams. By doing so, they identify what is most important to the students and use that information to ensure that their goals, objectives, and supports align with their values and interests, making it more likely that students will be engaged and successful (Martinis & Gustin, 2017b). This stage is particularly important when students communicate dreams that are difficult or impossible to achieve. For example, if a student has an “impossible dream” to be a surgeon, the agencies can “dig” to discover the personal life experiences, values, and hopes that led to that dream. It may be that she is interested in health care, or likes to take care of people, or is interested in understanding how the human body and other complex systems work. Using this information, the agencies can work with the student to explore and identify goals and objectives that are consistent with those values – such as educational programs in health, science or mechanics; job goals in the health or personal care field; and independent living supports built around taking care of her health and participating in community opportunities that match her interests (Martinis & Gustin, 2017b).

In the final stage - Develop – the students, their families, and the three agencies use information gleaned from the Dream and Dig stages to create the students’ support plans: the Individualized Education Programs, Individualized Plans for Employment, and person-centered plans required by law. By holding joint meetings and sharing information, the students, families, and agencies ensure that student goals and objectives are consistent across programs and that supports are provided by the agency best suited to do so.

After the plans are created, the agencies coordinate implementation and communicate regularly to monitor and update each other on the student’s progress toward meeting his or her goals. This empowers students, families, and agencies to build on success and address concerns as they arise by adjusting goals and supports or developing new ones as needed. At the same time, the increased communication and collaboration responds to and allays parents’ concerns for the future, reducing any perceived “need” for guardianship. Consequently, this process eliminates the inefficiencies, redundancies, and dangers of a “silo system,” while saving time and resources that may then be used to plan for and provide more effective and efficient supports.

Preliminary Results of the Program

The Successful Transitions Program partners implemented the program with several students in the 2018-19 school year. In May, 2019, they asked participants – including students, parents, teachers, counselors, and other professionals – to complete a survey to give their impressions of the program. Their responses show the positive impact the program has had on the work and lives of all participants:

• 86% of respondents Strongly Agreed or Agreed that the program helped prepare students for life after high school.
• 100% Strongly Agreed or Agreed that the program improved the supports provided to students.
• 73% Strongly Agreed or Agreed that the program was an easy process.
• 93% Strongly Agreed or Agreed that the program increased the amount of supports and services that students received.
• 100% Strongly Agreed or Agreed that the program helped identify student needs.
• 100% Strongly Agreed or Agreed that the program provided better supports to meet student needs.
• 93% Strongly Agreed or Agreed that the program is a good use of planning meetings.

Next Steps: “Equality of Opportunity”

The Successful Transitions Program demonstrates the promise and potential of CCS and SDM to improve support planning and provision, and enhance individual and program outcomes. Similar programs were implemented in Ohio, with one reporting improved student engagement, education and independent living supports, and employment outcomes (Richland County Board of Developmental Disabilities, 2017).

As these programs, and others like them, grow and scale, the lessons learned from enhanced coordination and collaboration can help people, professionals, and agencies develop more effective plans and supports, empowering people with disabilities to achieve the “equality of opportunity, full participation, independent living, and economic self-sufficiency” promised by the Americans with Disabilities Act (42 U.S.C. § 12101(a)(7)).