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CHARTING THE LIFE COURSE – FOCUS ON THE FAMILY AND DISABILITY PRESENTED BY LATRISA MORGAN, MA ADMINISTRATOR- SSD PARENT EDUCATION AND DIVERSITY AWARENESS JANUARY 20, 2015

WHO’S THAT GIRL?

Provide ideas and a framework that will help families reframe how you think about the life course of those who happen to life with disabilities Focus on “real life” experiences” can impact the trajectory to a “good life” Highlight the significant role families play in its members lives

LIFE COURSE FRAMEWORK Life is a journey. “Our lives are not static, they change everyday”. It’s all about vision “Anything is possible, with the right vision”. Everything is connected. “What you do today affects your life for the future”. Our overall compass is “quality of life”

UNDERSTANDING SELF DETERMINATION “Self-determination can be viewed as quality or characteristic of a person, similar to good manners, or other qualities that parent work to develop in their children. Like other desirable qualities, children can start learning to be self-determined from birth by having opportunities to make choices, learn about new places and things, build community connections, develop skills, and learn responsibility”.

CURRENT REALITY Individuals and their families: Feel alone and afraid Lack information Unknown vision for the future Hard to navigate

INDIVIDUALS EXIST WITHIN A FAMILY SYSTEM WHERE: THE INDIVIDUAL will achieve self- determination, interdependence, productivity, integration, and inclusion in all facets of community life FAMILIES will be supported in ways that maximize their capacity, strengths, and unique abilities to best nurture, love and support the individual to achieve their goal

FAMILY ROLES Individuals, no matter their age, exist within a family system. The role of the family changes and evolves as a child grows and changes, from infancy through early childhood, school age, transition to adulthood, and adult years into aging. During the earlier years the child is more dependent on the parent or family unit. During the transition and adult years, the family, while still involved and an important part of the person’s life, takes on different roles as the person assumes a larger role in making their own choices and decisions about how they live their life.

CARING ABOUT: IT’S A LIFETIME COMMITMENT… Parents/families love their child like no one else does or can. Parents/families can help make sure that there are always people in their child’s life that care about them and will be there for them, especially when the parent no longer can. Parents/families need to start sharing knowledge, whether verbally, or by writing down information that can someday help another person to assume some of the roles. A parent/family will continue to love their child and make sure they are “okay” long after they are able to physically provide day to day care needs. Adopted from Bigby & Fyffe (2012), Dally (1988), Turnbull et all (2011)

CARING FOR: Provider of day to day care – Parents/families make sure that their child is safe and well taken care of on a daily basis throughout childhood. This responsibility may continue well into adulthood when a son/daughter has a disability. Material and financial- All parents/families provide for the material and financial needs of their child during the school years – food, shelter, clothing, etc. However, when a loved one has a disability or special healthcare need, this type of support may go on for much longer, depending on the individual’s ability to earn income. Facilitator of inclusion, recreation, spirituality, and meaningful activities- Family makes sure that their loved one has opportunities to meet people, make friends, connect with others in the community and have fun interacting with others. Advocate for support-Parents and family help an individual get supports and services from various sources, including school, agencies, systems, and the community; as well as advocating for inclusion in all aspects of community life.

FOCUSING ON THE FAMILY

New Reality Quality Of Life Building an Inclusive and Productive Life in The Future

Lets talk about “Anticipatory Guidance” and “Life Trajectory.” WHAT IS CHARTING THE LIFE COURSE?

“Everyone wants a good life..” LIFE TRAJECTORY WORKSHEET

We are always on a journey…

PEOPLE WITH DISABILITIES AND THEIR FAMILIES HAVE THE RIGHT TO LIVE, LOVE, WORK, PLAY AND PURSUE THEIR LIFE ASPIRATIONS JUST AS OTHERS DO IN THEIR COMMUNITY. FRAME OUR THINKING AND ACTIONS AROUND VISIONS, LIFE EXPECTATIONS, FAMILY AND LIFE OUTCOMES

INTEGRATED SUPPORTS ACROSS THE LIFE COURSE

FRAMEWORK THAT SUPPORTS INDIVIDUALS AND FAMILIES CHARTED 1.Defined by eligibility 2.Caregiver or parent 3.Tension between self- advocacy and family support 4.Crisis, immediate response 5. Supporting care giver in order to decrease demand on long-term service NEW CHARTER 1.Not a program or based on eligibility, its needs based as defined by the family 2.Family is defined functionally, inclusive of siblings, parents with disabilities, grand parents 3.Enhances opportunities for self-advocacy and self determination 4.Preventative, long term planning 5.Creates a quality of life for person with DD and their family

WHERE WILL MY CHILD LIVE? Uncharted Own home Shared Living Space Co-op Environmental Adaptations Slightly Charted Independent Supported Living Charted Training Centers Intermediate Care Group Homes

WHO WILL SUPPORT MY CHILD? Uncharted Remote Monitoring Assistive Technology Human-service coops Slightly Charted Self-directed Services Respite Micro-boards Charted Staff hired by Provider

WHAT WILL MY CHILD DO FOR A LIVING? Uncharted Micro-enterprise College/Tech Schools Career Military Slightly Charted Supported Employment Volunteerism AmeriCorps/VISTA Charted Sheltered Workshops Day Habilitation

VISION FOR THE FUTURE- INCLUSIVE COMMUNITIES A world where everyone is: Welcome, accepted, and included Valued and treated with respect, fairness and equality Included in their communities (universally designed for physical, cognitive and social accessibility) Given opportunities to dream, achieve success and change the world.

FOCUS ON TRANSITION DOCUMENT This guide is based on Charting the Life Course. Helps generate questions to ask, options to consider, and things to talk about with your transitioning youth. Families can focus on their current situation and stage in life, but may also find it helpful to look ahead and start thinking about the future. This quick reference guide is a starting place to the transition point in time, to give you some key points and issues to consider, and help your youth and family to have a smooth and productive transition from school to adulthood.

PEOPLE ARE THE EXPERTS OF THEIR OWN EXPERIENCES… YOU KNOW YOUR CHILD BEST!

BE AWARE OF THE POWER OF CONVERSATION AND PAY CLOSE ATTENTION TO HOW YOU SPEAK AND LISTEN.

WE WILL NOT TRAVEL DOWN THESE ROADS UNEQUIPPED TO GET BACK ON COURSE AGAIN!

Provide ideas and a framework that will help families reframe how you think about the life course of those who happen to life with disabilities Focus on “real life” experiences” can impact the trajectory to a “good life” Highlight the significant role families play in its members lives RECAP

THANK YOU FOR YOUR PARTICIPATION!