1. Thinking about the Future…Today
Thinking about the Future…Today! The Role of Family Leaders & Family Organizations in Making Transition Work!
Presented by Diana Autin, Co-Director, & Erin Seigh, Transition Coordinator, Statewide Parent Advocacy Network of NJ (SPAN)

2. A meaningful future requires that families:
Have great expectations
Understand their child’s abilities & needs
Encourage & support their child’s dreams
Understand relevant laws and rights
Are aware of available resources
Have access to person-centered planning
Build partnerships
Have a vision
Make a plan
Get the support they need

3. What can family leaders do to make this happen?
Advocate for changes in:
Policies
Programs
Practices
Build the capacity of parents & professionals

4. The Futures Framework

5. What is the current situation?
What are current transition outcomes?
MCHB core outcome data
Special education transition data
Other data? (Institutions vs. community living, etc.)
What are current transition policies?
Health policies
Education policies
Vocational rehabilitation policies
Medicaid policies
Other policies

6. What is the current situation?
What are current transition improvement efforts (health, education, other?)
What are current transition impact points?
MCH Advisory Committees
Special Ed Advisory Council
Medicaid Advisory Council
How are families represented?
Membership on councils
Public input time
Focus groups for feedback
Other

7. Consider Barriers & Opportunities
What are the barriers we are facing?
What opportunities might be possible?

8. Family Leader Advocacy Role
Collect, analyze & share data with policymakers
Data from families contacting parent groups
Stories from families
Focus group information
Seek to participate on improvement groups
Represent family organization (F2F/FV SAO, PTI, FFCMH)
Support development of diverse family leaders

9. Family Leader Family Empowerment Role
Educate families & prepare them to participate in transition-related activities
Relevant laws, rules, regulations, policies
Effective transition policies & practices
How to be an effective partner with professionals
How to be an effective advocate
How to prepare their youth for self-advocacy & adult life
How to access needed supports

10. Family Organization Roles
F2Fs/FV SAOs
Train parents, PCPs, HMOs, case/care managers
Support parents at meetings
Parent Centers (PTI/CPRC)
Train parents, educators, CILs,
Support parents
Parent to Parent Programs
Connect parents to trained transition-age support parents
Facilitate parent support groups
FFCMH Chapters
Train parents, mental health professionals
Disability-specific groups

11. Help families understand: It’s never too soon to start getting ready for the major change of transition from childhood to adulthood!

12. Support Parents to… believe they are the expert regarding their child
recognize they are the constant in their child’s life
perceive themselves as an active agent responsible for change
recognize and promote their child’s abilities, talents and interests…

13. Help parents develop a vision of their child’s future…
expect people to view their child as a child first with the same basic needs as any other child
believe a person with a disability is a valued and contributing member of the family and society
have high expectations for their child and believe their child has the skills to obtain integrated services and full community participation

14. Provide support to parents on:
People
Health
Choices
Strategies
Barriers & Supports
Places
History
Respect
Hopes & Fears
Themes
Person-centered planning
Who is my child today? How do they help at home? What are their likes/dislikes?
Where will my child live? What do we need to do/what do they need to learn/do today to make that possible?
What will my child do?

15. Provide support to parents on:
Having a dream
Setting goals
Taking first steps

16. Help Families Empower their Child
Provide early career exploration activities & encourage career-related activities including through volunteering
Emphasize through family & home activities the basic skills needed to succeed in school & the workplace

17. Help Families Empower their Child
Monitor school assignments & capture opportunities to relate skills to the world of work & adult roles & responsibilities
Build a relationship with their child's career or guidance counselor or transition specialist; ask for career information
Be available to offer needed support as appropriate in their child’s workplace; offer guidance & suggestions but respect the employer/employee relationship

18. Help Families Empower their Child
Provide transition teams with info regarding child’s skills & behaviors at home, past experiences, & dreams & goals
Ask questions of teachers, counselors, their child regarding education & career options, labor market trends, community resources, specific family & student preferences & realities
Emphasize careers, not labels
Emphasize ability, not disability

19. Help Families Empower their Child
Listen to & support their child when discussing their interests & future goals, even if their ideas may seem unrealistic
Encourage their child to be a major player on the planning team & to talk about their interests, dreams & goals to the maximum extent possible

20. Connect families to needed supports