Transition from Adolescence to Independence, a few resources to get you started
ACCESS-VR Adult Career and Continuing Ed Services (Vocational Rehab)
ACCESS-VR is an office of the New York State Education Department. VESID's Vocational Rehabilitation Counselors assist adults with disabilities to become independent through employment. In addition, specific counselors are assigned to work with high school students within two years of their anticipated graduation to assist with the transition planning process. VESID can help an eligible person with a disability plan for a career, obtain job coaching, education or training to achieve work goals, and work with employers and training institutions to make sure reasonable accommodations are provided to individuals when needed.Website: http://www.acces.nysed.gov/vr/
Contact: Vocational Rehabilitation district office which serves your county or borough
Center for Parent Information and Resources
The Center for Parent Information and Resources (CPIR) serves as a central resource of information for parents, individuals, caregivers and other people involved in the lives of people with special needs. The resource section is offered in English and in Spanish. Click Resources, then in the K-12 section, go to Transition to find links to information regarding all aspects of the transition process. There is also a transition workbook for teens transitioning to adulthood.Web site: www.parentcenterhub.org
This is a Federal government website with information regarding disability programs and services nationwide. There is information on benefits, education, housing, employment and many other topics. A person can search for information by state or subject and there is an extensive section on transition planning. You can also find organizations in your community to give you the supports you need.Web site: www.disability.gov
Got Transition/Center for Health Care Transition is a cooperative agreement between the Maternal and Child Health Bureau and The National Alliance to Advance Adolescent Health. Its aim is to improve transition from pediatric to adult health care through the use of new and innovative strategies for health professionals and youth and families. The website provides links to transition planning tools such as checklists, flowsheets and policies that can be customized by professionals for their practice. The website has a frequently asked question and answer section for youth and their families.Got Transition
1615 M Street NW, Suite 290
Washington, DC 20036
Fax: 202-429-3957 Website: info@GotTransition.org
Heath Resource Center
Heath is the official resource website of the HSC National Youth Transition Center. It is an online clearinghouse of 45 organizations with a common mission to empower youth and young people with disabilities on postsecondary education for individuals with disabilities. It provides educational support services, postsecondary training, transition resources, webinars, guides and information on available resources at American universities for disabled students.Website: http://www.heath.gwu.edu
Heath Resource Center
Email: AskHEATH@gwu.edu Web site: http://www.heath.gwu.edu
National Collaborative on Workforce and Disability for Youth (NCWD/Youth)
NCWD/Youth works to ensure that youth with disabilities are provided coordinated, integrated, high quality services in their transition to employment and independent living. It provides support, education and advocacy to youth and families and youth practitioners. The website offers articles, guides, fact sheets and links to a variety of topics and services. There is a link to a transition toolkit that contains many useful hints and tips and a guide. There is also helpful information for families and parents of young people with disabilities with useful information on how to be the most supportive during transition.Website: http://www.ncwd-youth.info
National Collaborative on Workforce and Disability for Youth
Phone: 202-822-8405, ext163
New York State (NYS) Regional Transition Coordination Site Network
The NYS Education Department has seven Regional Transition Coordination Sites that work with school districts to help prepare high school students with disabilities for living, learning and working in the community as adults. Beginning at age 15, schools are required to provide transition planning and services for students classified as having a disability. Transition planning and services are documented in a student's Individualized Educational Program (IEP), include a coordinated set of activities (services) related to the student's post-secondary goals, and take into account the student's needs, abilities, preferences and interests. Although the Regional Transition Coordination Site Network primarily provides technical assistance to school districts, the sites can also provide information to families and youth requesting assistance with transition planning.Website: http://www.vesid.nysed.gov/specialed/transition/tcslist
NYS Regional Transition Coordination Site Network
Sophie McDermott, Project Manager
Parent Advocacy Coalition for Educational Rights (PACER Center)
PACER is a national, non-profit organization dedicated to improving the lives of children and youth with special health care needs. Services include support, assistive technology, education and helpful information, and links towards independent living. The website has a variety of helpful videos and guides and useful information on laws and people's rights. All services are provided free of charge by parents of children with special health care needs.Website: http://www.pacer.org
PACER Center, Inc
8161 Normandale Blvd.
Minneapolis, MN 55437
Prior to the 1960's, many children with life threatening illnesses and genetic conditions did not survive to adulthood. Today many adolescents and young adults with special needs not only survive but thrive into adulthood. These young people need doctors and other services that serve their complex and special needs to allow them to attend college or move into the workforce and manage their own medical needs.
NYMAC, the New York Mid Atlantic Consortium for genetic newborn screening, was instrumental in helping to put together a series of webinars in the spring of 2015 on the subject of transition.
Key Components of Transition/How to Find Information, and Successful Transition System Models
This webinar is primarily for practitioners. It explains where to find information and forms on the http://www.gottransition.org/ website and the need for a written road map for families to follow.
Successful Transition System Models
- The Adult Side of Sickle Cell Disease
- A Dedicated Transition Center
This webinar has three parts. The first two are primarily oriented to practitioners. The discussion is about how and when to transition, potential pitfalls and a sample plan is shown. The third part would be helpful for practitioners, families and young people. It explains the different roles for professionals and families and provides a list of items to think about. At the end of the webinar there are links to four videos on transition planning.
Adolescence to Adulthood and Assumption of Responsibility for Self-Care for Patients with Disabilities
This webinar is primarily for young people and parents. The first segment is about self-determination and the importance programs, such as sports, can play in fostering independence. The second segment is about guardianship and what it means.
Insurance Concerns and Solutions – How Does the ACA Impact This Population?
This webinar is helpful for families, health and social service professionals, students and young people. The subject is about the Affordable Care Act, The Health Market Place, and Obama Care, including who is insured and uninsured.
The Nuts and Bolts of Documenting and Billing for Comprehensive Care
This webinar is designed for practitioners. It gives helpful advice on billing for transition services. Example ICD-9 codes and worksheets are shown
Social Determinants of Transition – Employment, Housing, Life Skills, Building Assets
This webinar is a comprehensive resource for parents, individuals, social workers and practitioners. The discussion focuses on potential road blocks in the transition process and provides a road map to be followed to make the entire process easier.
Patient Panel Perspectives, Questions and Answers
- Kaitlyn Kormanik, adult living with PKU
- Peyton Sefick, adult living with Arthrogryposis multiplex congenital
- Donnette Carroll, adult living with sickle cell disease
Youthhood is an informational site affiliated with the National Center on Secondary Education and Transition (NCSET), which helps youth plan for life after high school. It is a youth-designed site for youth with special health care needs. Youthhood provides easily accessible information on postsecondary education, independent living, and opportunities to achieve a successful future.Web site: http://www.youthhood.org
National Center on Secondary Education and Transition
Institute on Community Integration
University of Minnesota
6 Pattee Hall
150 Pillsbury Drive SE
Minneapolis MN 55455