Family-Professional Partnerships as a Means to Enhance Family Quality of Life Outcomes

1. Family-Professional Partnerships as a Means to Enhance Family Quality of Life Outcomes Ann Turnbullturnbull@ku.edu Beach Center on Disability1200 Sunnyside Avenue, 3111 Haworth Hall The University of KansasLawrence, KS 66045-7534 785-864-7600 (phone)785-864-5825 (fax) www.beachcenter.org 2006 Tennessee CEC Conference – “A World of Possibilities: Excellence in Special Education” Memphis, TN February 17, 2006

2. “If only youth knew, and if only age could”Mark Twain 1

3. Family-Professional Partnerships: “The Good, The Bad, and The Ugly” 2

4. “The Bad and The Ugly” 3

5. “What Will You Do When You Fail?” 4

6. Family-Professional Partnerships: Qualitative Research • Communication • Professional Competence • Respect • Commitment • Equality • Trust 5

7. Partnerships as Support: From Qualitative to Quantitative Research Qualitative Domains Factors • Communication • Professional Competence • Respect • Commitment • Equality • Trust • Relationship between service provider and child • Relationship between service provider and parents 6

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9. Family Textbook • Delineates a family systems theoretical orientation. • Provides students with historical and legal foundations related to family roles. • Describe 7 partnership principles with trust being the keystone. • Applies the 7 partnership principles to enhancing partnerships in student evaluation, development of the IFSP/IEP, and implementation of the child’s IFSP/IEP program. • Has extensive website – www.prenhall.com/turnbull with case studies, role plays, resources, and test questions. In the next year, the Beach Center will have an online version of the course. 8

10. Research Findings on Partnerships • Families from three age groups of children (birth-3, 3-5, 6-12) place equal importance on different aspects of partnerships. • Regarding satisfaction with partnerships, parents of children ages 6-12 are uniformly less satisfied than parents of children ages 3-5, who also are less satisfied than parents of children birth-3. 9

11. Low income families rate all the items related to partnership as equally important as contrasted to middle and high income families; but low income families are significantly less satisfied. • Families who have higher satisfaction with partnerships also have higher family quality of life. • Partnerships can make a difference in how well services impact families. 10

12. Family Quality of Life • The degree to which family members’ needs are met. • The extent to which they enjoy their time together. • The extent to which they are able to do things that are important to them. 11

13. Family Quality of Life Disability-Related Support Family Interaction Physical/Material Well-Being Emotional Well-Being Parenting Family Quality of Life Domains 12

14. Disability-Related Support Definition: Focuses on support from family members and from outside of the family provided in order to benefit the family member with a disability. Sample Items • My family member with special needs has support to achieve goals at home. • My family member with special needs has support to make progress at school or in the work place. • My family member with special needs has support to make friends. 13

15. My family member with special needs has support to achieve goals at home. • My family member with special needs has support to make progress at school or in the work place. 14

16. A Home of His Own 15

17. Work 16

18. My family member with special needs has support to make friends. 17

19. Interactions with Friends 18

20. Participation in Activities 19

21. Power of Extracurricular Activities 20

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23. Which One Has a Disability??? 22

24. Tips for Promoting Friendships • Create your own vision that children and youth with disabilities “belong” in typical relationships and typical settings. • Support families to adopt a vision of their own about belonging. • Advocate for inclusive settings and foster friendships with these settings. • Seek opportunities for extracurricular participation and provide supports to enable it to be successful. 23

25. Provide scripts for answering questions of others and for helping others feel comfortable and confident. • Build on each child’s strength in order to make connections with others. • Encourage families whose children have had success with friendships to share their experiences with parents who doubt that it can happen. 24

26. Family Interaction Definition: Focuses on the relationships among family members. Sample Items • My family members talk openly with each other. • My family enjoys spending time together. • My family members show that they love and care for each other. 25

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28. Tips for Strengthening Family Interaction • Encourage families to bring extended family members to IFSP/IEP meetings. • Foster communication with extended family through sharing artwork, writing emails/letters, and/or communicating in the child’s preferred mode of communication. 27

29. Find out about the particular interests and hobbies of extended family members and think about how to make a connection between those and the child’s strengths and preferences. • Share information about community resources that could be helpful in expanding the understanding of extended family members about the child’s special needs. • Help connect the parents and extended family members with other parents and extended family members who have made very positive adjustments. 28

30. Physical/Material Well-Being Definition: Refers to the resources available to the family to meet its members’ needs. Sample Items • My family has a way to take care of our expenses. • My family gets medical care when needed. • My family members have transportation to get to the places they need to be. 29

31. Income Comparisons 30

32. Children who have disabilities have a greater likelihood of… • Living in poverty 31

33. Children Who Experience Poverty… • Are more likely to have a single parent (time) • The parent is more likely to have less education (need for information and advocacy support) 32

34. Ways to Support Families • Refer to community agencies that specialize in assisting families with economic resources. • Look for organizations that invest resources in students such as Big Sister/Big Brother programs and community service clubs. • Help families understand opportunities through SSI. • Help families understand opportunities through Medicaid. • Partner with families to seek assistance to meet their needs through a broad array of Tennessee resources – www.nichey.org/stateshe/tn.htm. 33

35. Emotional Well-Being Definition: Refers to the feeling or affective parts of family members and family life. Sample Items • My family members have friends or others who provide support. • My family has the support we need to relieve stress. • My family members have some time to pursue their own interests. 34

36. Facilitating Parent to Parent Support • One-to-one support between a veteran parent and a parent experiencing a challenge for the first time for the purpose of providing emotional and informational support. • Veteran parents are experienced and receive formal training. • Most programs are cross-disability and cross lifespan. 35

37. Veteran parents volunteer their time. • Most matches last between 1-6 months, although many matches evolve into lifelong friendships. • Support is individualized, responsive, and available 24 hours a day. • Most parent to parent programs offer additional activities. 36

38. Parent Perspectives “When our son with Down syndrome was born three years ago, my husband and I were devastated. We called our Parent to Parent program, which supplied us with invaluable information, as well as sending us a “support couple” to talk with. It was important to us to meet with the couple – not just the mother – since my husband takes as much responsibility for caring for our children as I do. Also important was that we were matched with a couple whose child had also been through open heart surgery (our son had major defects). The couple that our Parent to Parent program sent us were such warm, optimistic, “normal” people, they gave us hope. 37

39. About a year later, my husband and I were trained by our program to be support parents. The Parent to Parent office has many requests for visits from both father and mother. My husband was one of very few men willing to go through formal training. I have also found that support for non-English speaking families is hard to come by. It has been satisfying to me to be able to serve the Spanish-speaking community.” 38

40. Research Findings on Parent to Parent • Results • 128 parents participated from five states • P2P makes a significant difference in • The amount of progress parents feel they have made in getting their needs met. • Parental acceptance of the family situation related to disability. • Parental acceptance of the family situation related to disability. 39

41. Tennessee Resource for Parent to Parent • Parent Encouraging Parents • Greg Yopp • www2.state.tn.us/health/mch/css.htm 40

42. Parenting Definition: Refers to activities that adult family members do to help children grow and develop. Sample Items • Adults in my family have time to take care of the individual needs of every child • Adults in my family teach the children to make good decisions • Family members help the children with school work and activities 41

43. Good Information is Essential for Good Parenting • Seek Tennessee resources for families. • STEP (Support and Training for Exceptional Parents) – 800-280-STEP 42

44. Family members help the children learn to be independent. 43

45. Positive Outcomes of Self-Determination • Making important decisions • Earning more money per hour • Experiencing a higher quality of life 44

46. www.beachcenter.org 45

47. Family members help the children with school work and activities. 46

48. Tips for Supporting Parents to Help with Homework • Ensure communication among all students’ teachers to avoid homework overload. • Ensure the general education teachers have access to full information on students’ preferences, strengths, and needs related to homework modification. • Increase students’ responsibility. • Teach students to use homework planners. • Teach students to graph their homework completion. 47

49. Foster full teacher-student-parent communication about homework. • Use students’ graph of homework completion at parent-teacher-student conferences to discuss progress with parents. • Communicate frequently with parents about homework assignments and students’ progress. • Use written forms of communication such as notes, progress reports, and forms. 48

50. Give parents access to homework assignments by telephone/voicemail with the option for parents to leave messages if they have questions. • Provide parents with teachers’ names and their preferred times and methods for being contacted. 49