Vermont to change culture of disabilities
by Jessalyn Gustin and Jonathan Martinis
Change the Culture, Change the World: Increasing Independence by Creating a Culture of Coordinated Support
The years leading up to high school graduation are a time for students to build independence. It’s a time of self-exploration, the age of driver’s education and college applications. Then after, graduates move toward adult goals and achievements – higher education, employment, long-term relationships, personal growth etc.
For students without disabilities, this is a time for making connections and learning new skills. They will have opportunities to take part in programs and meet partners and peers that will help them through college and into their careers. Typically, these students can count on a guidance department and their families’ knowledge and experience to help them develop plans for their future.
But for students with disabilities and their families, however, according to Transition services: Systems change for youth with disabilities? Journal of Special Education by Katsiyannis, A., deFur, S., & Conderman, G., it can be a period of confusion and frustration with the “fragmented system . . . within high schools and adult services.”
Organizations need to work together
Too many of these students become overwhelmed by the near-constant need to identify service providers, find funding streams and set up supports. As a result, they can lose the opportunity to create and achieve vivid, constructive and meaningful plans and dreams.
Too often, systems serving students with disabilities operate in “silos” focused only on what they provide and unaware of what others do. Worse, some providers engage in territorial “battles” that duplicate or cancel out others’ efforts.
How can students stuck in these systems imagine or navigate a life beyond the safety of their family homes and local school districts? How can we make sure that people with disabilities receive what they need to become valued, contributing members of their communities?
To do so, we must create cultural change by moving away from separation and silos. Instead, individuals, families and providers must work together to empower people with disabilities to live independent, productive and community-included lives. We call this a culture of coordinated support (CCS).
In a CCS, people with disabilities work with agencies and organizations – like schools, vocational rehabilitation agencies, and other service providers – to plan and coordinate their efforts (while this article discusses creating a CCS for students, the model can work effectively for any person with a disability).
So, schools will not only provide special education services, they will coordinate with others serving the student to complement and supplement their work. Providers will collaborate with each other so their plans and processes address the student’s goals, the supports needed to reach them, and the people and agencies that will provide them. As a result, students will receive badly needed supports in a far more effective and efficient manner.
The CCS model is consistent with existing legal requirements. For example federal laws state that schools must provide transition services, “a coordinated set of activities” to help students with disabilities access and achieve “post secondary education, vocational education, integrated employment . . . independent living, [and] community participation.”
Hence, schools are already required to coordinate and collaborate with providers of employment, independent living and other supports. Similarly, federal laws already requires vocational rehabilitation agencies to coordinate with schools on transition services “as early as possible” and “provide pre-employment transition services to assist students with disabilities.” Medicaid rules already require providers to create Person Centered Plans that address “community participation, employment, income and savings, health care and wellness, [and] education.”
Plan and coordinate work
To create a CCS, the student, family, school and providers should plan and coordinate their work so that each knows what the others are doing and will do for the student. The student’s support plans should have a section on coordinated support, describing how each agency and provider will work with the others to help the person achieve his or her goals. To develop robust, far-reaching plans, we recommend following these guidelines:
- Think, Listen, and Listen Again: What are the person’s goals in important life areas like education, employment, housing, financial planning, and medical care?
- Recognize Opportunities and Challenges: What does the person need to achieve those goals? What are the challenges the person must overcome to reach them?
- Identify Allies: Who are the people, agencies, and organizations that can provide those supports and help the person overcome those challenges?
- Empower and Implement Support: Which people, agencies, and organizations will provide those supports? How and when?
- Coordinate Efforts: How and when will the school, people, and providers work together?
Coordinated change of culture in Vermont
We are proud to work with Vermont as it develops the first statewide plan for creating a CCS. Vermont has convened a task force, which we are facilitating, “to create solutions and initiatives that transform practices in a way that brings a culture of collaboration” throughout the state and its systems. Representatives of the legal, educational, employment, advocacy, mental health, and developmental disabilities communities are joining together in this effort. We hope Vermont’s vision will be an inspiration and model across the country.
For people with disabilities, there are many side trips on the journey from student to graduate. Taking part in early intervention, IEPs and standardized tests. Working with educators, consultants and counselors. Creating, modifying and completing service plans. After these tasks are done, the students will be adults, expected to live and work in the “real world.” If we create a culture of coordinated support, schools and service providers will meet their obligation to help people with disabilities dream and lead lives of independence and meaning. If we create a culture of coordinated support, people with disabilities will have the same opportunities for success and security as their nondisabled peers. If we change the culture, we will change the world!