2. Families living with brain injury Ronald C. Savage, Ed.D.

3. How can we better support our families? n ? Do we become more empathetic n ? Do we listen harder n ? Do we work harder, longer n ? Do we involve them in everything n ? Do we protect them and solve problems for them n ? What have we learned before…..

4. Early Stages of Adjusting to a Disability Lessons from special needs literature n Feeling of life being irrevocably changed after diagnosis n Differences in emotional responses between spouses n Period of mourning death of dreams for child n Respect hope and don’t mistake it for denial Lash, 2007

5. Reasons parents distrust professionals from MR/DD literature… n Professionals encourage maximizing young adult’s independence but do not understand cost to family in time and energy n Tell parents they either do too much or too little n Parents worn down dealing with system and want to avoid further interactions n Hard for parents to believe professionals are listening to them. Stineman, Morningstar, Bishop, and Turnbull, 1993.

6. 5 ways to support families… n Family-centered care principles n Understanding coping strategies n Respecting family functioning n Developing communication skills n Creating education and training opps

8. 1. Family-centered care n Adopting new attitude and giving up old beliefs n Guiding principles n Recognizing family members’ unique expertise and knowledge

10. 2. Family coping styles n Psychological coper n Physical coper n Spiritual coper n Cognitive coper n Support system coper DePompei, 2008

12. 3. Respecting family functioning n Labeling: dysfunctional or in denial versus seeing changeable behaviors n Recognizing the recovery roller coaster n Understanding cultural components

13. Brain Development Rollercoaster

14. World equals 100 people n 57 Asians 21 Europeans 8 Africans 14 North/South Americans n 70 of 100 people of color n 70 of 100 would not be Christian n 45% of world’s wealth held by 6 people – all US citz n 70 unable to read n 80 would live in sub-standard housing n 50 would suffer from malnutrition n 1 would have a college education

16. 4. Developing family communication skills n Content of communication n Style of communication n Environment for communication n Encouraging family communication n Respect and dignity Savage 2000

18. 5. Family education & training n Family as the ultimate Case Manager n Transfer of knowledge and skills Lash 2009

19. Case Management Skills for Families n Assessment n Information gathering n Referral n Service coordination n Advocacy n Evaluation Lash 2009

20. Case Management Skill #1 n Assessment n How has the brain injury affected my child?

21. Case Management Skill #2 n Information gathering n What do I need to know?

22. Case Management Skill # 3 n Referral n When do I need to get a specialist involved?

23. Case Management Skill # 4 n Service Coordination n How do I pull this all together?

24. Case Management Skill #5 n Advocacy n How can I help others understand what my child needs?

25. Case Management Skill #6 n Evaluation n How do I know if this is working?

27. Conclusion n Brain injury is contagious…it effects the entire family n Recovery is a roller coaster n Families + professionals = success n Prevention is the only cure