I Can’t Get No Satisfaction

1. I Can’t Get No Satisfaction Effective Approaches to Obtain Helpful Feedback Valerie J. Bradley Human Services Research Institute Sturbridge, MAMay 26, 2005

2. What Will We Cover? • Challenges that confront families • Goals of family support • Principles of family support • Review of previous family support evaluation • Results of NCI survey • Involving families in other aspects of quality assurance

3. Isolation Lack of sufficient income Uncoordinated and erratic system Stigma Family tensions No public mandate for family support Lack of information Lack of focus on the family Exclusion from decision-making Challenges Facing Families

4. Goals of Family Support • To keep families together • To enhance capacity and independence • To improve the family’s quality of life and inclusion in their community • To enhance the availability of paid and natural supports • To facilitate connections among families

5. Family centered Family driven Family controlled Convenient and accessible Culturally competent Actively reaching out Available through developmental phases Respectful of family expertise Flexible Principles of Family Support Family Support Shall Be. . . . . .

6. Legislative Mandate Flexible Funding Family support councils Broad eligibility Utilization of Medicaid Focus on family Range of supports Flexibility through developmental stages Choice Focus on natural supports Components of FamilySupport Policy

7. In a Nutshell. . . • To do “whatever it takes” for families of people with disabilities so that they can live as much like other families as possible.

8. Results of Previous Family Surveys • Cash assistance and information are rated the most important components of a family support program • Case management support was rated very highly • Family support played a big role in preventing out of home placement • Families reported increasing participation in their communities

9. The Best Programs Are... • Family driven: Eachfamily leads the decision-making process concerning the type and amount of support they receive; • Easy to use: Families are not overwhelmed by paperwork and red tape; and • Flexible: Families can choose supports and services based on their individual needs and preferences.

10. National Core Indicators

11. Service Delivery& Satisfaction with Services

12. Phase VI Participant States

13. When you ask your service/support coordinator for assistance, does s/he help you get what you need?

14. Does your family get the services and supports you need?

15. If your child/family member does not speak English or uses a different way to communicate are there enough support workers available who can communicate with him/her?

16. Does your child/family member have access to the special equipment or accommodations that s/he needs (e.g., wheelchair, ramp, communication board)?

17. Do you feel that family supports have made a positive difference in the life of your family?

18. Overall, are you satisfied with the services and supports your child/family member and family currently receive?

19. Do the services and supports offered meet your family’s needs?

20. Are supports available when your family needs them?

21. If you have ever asked for services or supports in an emergency or crisis, was help provided to you right away?

22. If English is not your first language, are there support workers or translators available to speak with you in your preferred language?

23. Community Connections

24. If you want to use typical supports in your community (e.g., through recreation depts. or churches), do either the staff who help you plan or who provide support help connect you to these supports?

25. If you would like to use family, friends, or neighbors to provide some of the supports your family needs, do either the staff who help you plan or who provide support help you do this?

26. Do you feel that your child/family member has access to community activities?

27. Does your child/family member participate in community activities?

28. Choice & Control

29. Do you (or your family member) choose the support workers who work with your family?

30. If your family member gets day or employment services, does the agency providing these services involve you in important decisions?

31. Do you (or your family member) have control and/or input over the hiring and management of your support workers?

32. Do you (or your family member) want to have control and/or input over the hiring and management of your support workers?

33. Do you (or your family member) know how much money is spent by the MR/DD agency on behalf of your child with a developmental disability?

34. Do you (or your family member) get to decide how this money is spent?

35. Conclusion

36. Pay Attention to Methodological Issues • Engage families in setting the key areas to be covered • Field test survey • Make sure that its valid and reliable • Keep an eye on response rates • Share results with the families that responded

37. Apply Results of Survey Results • ME – realized that they needed to provide families with more information and increased case management • Orange County – found that young families did not have information about gaining access to community recreational and other generic resources

38. Monitoring Performance of Family Support Programs • Begin with family challenges and expectations • Families should participate in defining “what is quality” • Families should be involved in measuring the quality of services • Results of performance monitoring should be shared with families in an accessible fashion • Families should be involved at a policy making level where results of monitoring are interpreted