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)

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

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

The Futures Framework

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

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

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

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

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

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

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

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…

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

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?

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

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

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

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

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

Connect families to needed supports