Helping Families in the Journey with a Child with Special Needs


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J.Richards presentation given at the 2012 South Carolina Home Visiting Summit

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  • Handouts are on your table.
  • We are unable to be in every county BUT YOU ARE! Describe our vision. FC is YOUR organization!!!! I need one person at each table to pass around a sheet of paper. If you want to get connected and you are not, please write your name, phone number and email address (PLEASE PRINT CAREFULLY).
  • Helping Families in the Journey with a Child with Special Needs

    1. 1. Parent-To-Parent SupportConnecting Families with Children with Special Healthcare Needs to Support and Information
    2. 2. Why do we need each other?• The journey is a WHOLE lot better if you don’t go it alone. • Because one person can’t know it all. • Our children need our voices!
    3. 3. Together…We can dream about what we want for our children.When one falls down and feels like they just can’t get up, someone can lift you back up.We become stronger and more united.
    4. 4. What is it t hat y ou need most t o f eel equipped t o meet y our child s needs?70.0% 61.9%60.0% 44.4%50.0% 42.1%40.0%30.0%20.0%10.0%0.0% Information Emotional Support Education (workshops, trainings, etc.)
    5. 5. What is y our pr imar y w ay of get t ing infor mat ion y ou need for y our child?60.0% 49.3%50.0% 39.6%40.0% 32.8% 28.4%30.0%20.0% 8.2%10.0% 0.0% My childs doctor Other parents Internet School Service providers (Early Interventionist, Service Coordinator, etc.)
    6. 6. How often does your childs doctor direct you toresources/support to assist you in caring for your child? 33.33% 25.53% 18.44% 11.35% 11.35% r er ys ve es s ay ev wa Ne im lw tN et Al tA m os So os m Al m Al
    7. 7. Do you ever feel isolated/alone in your journey with your child? 80 74 70 60 50 40 Series1 31 30 20 15 15 10 5 0 Never Almost Never Sometimes Almost Always Always
    8. 8. Different Ways and Different TimesParents learn in many different ways and different times about their child’s disability or healthcare needs.Many of the emotions are the sameA new journey………….
    9. 9. Our EmotionsShock!!!!DenialAngerSadnessGuiltConfusionLoneliness
    10. 10. Hope Peace LOVE
    11. 11. Raising our children Going to Take a Village
    12. 12. Become part of our village and why? Family Connection of SC (FCSC) is the information and support connection for families with children with special healthcare need.
    13. 13. FCSC is a Link to the Nation• Our state’s Family-to-Family Health Information and Education Center – as appointed by the Maternal and Child Health Bureau.• SC Family Voices – A national advocacy group devoted to improved public and private policies and trusted resource on healthcare.
    14. 14. What is on the other end of the line?• A Father – who has taught nationally about the importance of fatherhood in the child’s life with special needs.• A mother who had NICU twins and has been in the hospital more times than you can count with her child. – she is trained to assist on Medicaid/TEFRA calls. We teach parents how to apply and how to appeal. (Partnership with DHHS)
    15. 15. • Habla EspanolWe now have a staff member who is aparent of two boys (twins) with agenetic disorder that speaks Spanish.She also has vast experience with the military.
    16. 16. What a parent gets by making a connection:• Parent-to-Parent Support (over 600 trained Support Parents)• You can become one too!• 1800 parents were matched 1:1 last year.
    17. 17. Parents are getting Connected• Support Groups (over 40 statewide)• 1700 Parents got connected in Parent Connections (i.e. support groups)• Over 700 children received care so that there parents could learn new information for better health outcomes.• Parents and professionals come together for the Hopes and Dreams Conference each year (partnering SDE, DHEC, DDSN)
    18. 18. Kid Connection
    19. 19. Caring for our children birth to threeWhat is BabyNet?What is the Family Partner Program?400 Parent-to-parent matches last year
    20. 20. Regional Parent Partners Partnering with DHEC, Maternal and Child Health, Children with Special Health Care Needs Division. Parent Partner for all DHEC regions.
    21. 21. One Parent At A TimeParents of a child with special health care needsTrained on community and statewide resourcesProvides telephonic or home visit supportBirth to 18 years oldIntensive support:  Medical and dental home  Caring for yourself  Care Notebook  Medicaid/Insurance  Resources
    22. 22. Asthma is the Leading Cause of Illness For our Children in SC Project Breathe Easy Trained parents helping parents Home Visits, asthma notebook, care coordination with physician, pillow and/or mattress encasement Better health outcomes for children.
    23. 23. •Be a part of something amazing and bring change to yourcommunity!•Volunteer to be a Navigator Team Leader in your community.• We are looking to give free leadership training to individualswho want to start a Navigator Team.
    24. 24. Trained parents are visiting parents atAt Cribside…cribside to provide support that can only be understood by someone who has “been there.” In the family centered care arena, the saying goes “the way care is provided is as important, if not more important, than the actual medical care
    25. 25. Strong family-professional partnerships:Families and providers make decisions together with the childparticipating as much as possible.Administrative policies and practices support long-termrelationships between families and providers.Families help professionals develop and use tools thatmeasure quality of care and family satisfaction.Families serve on statewide and local public and privatepolicymaking boards.
    26. 26. The SC Information and Support Connection for Parents with Children WithSpecial Healthcare Needs and the Professionals who Serve them