1. Laurel Dimler Sarah Meyer Holly Major Vickie Clayson Gwen Mitchell Brandi Young

2.  For several years URLEND trainees have been asked to have a personal experience with a family who has a child with a disability/special health care need by interviewing the family in their own home.  Once the interview had been completed, none of the data collected was analyzed.  The idea for expanding the interview assignment grew into a group project: The interviews as a whole could provide a learning opportunity for all trainees.

3. The purpose of the family interview is to allow the families to educate professionals and provide a personal experience for the trainees.

5.  Functioning of the entire family is related to child outcome.  The child is vulnerable to the effects of a less than “optimal” family.

6.  Family cohesiveness is a significant predictor of growth in communication, daily living, and social skills.  A supportive, caring, and positive family environment increases positive outcomes.

8. Participants included a total of 24 families who participated in the assignment across Utah, Idaho, Wyoming, North Dakota, and Montana.

9.  The interview consisted of collecting demographic data and three questions that were created by the authors.  Responses were then coded and analyzed for patterns.

10.  The interview consisted of collecting demographic data and three questions that were created by the authors.  Responses were then coded and analyzed for patterns.

11. 1. What daily activities are the most challenging for you and your family? 2. How have you change/adapted routines for holidays to meet your family’s needs? 3. How does having a child with a disability/special health care need positively impact your family?

13.  There were 24 families that participated in the interviews  The majority (20) were with the mothers  The average SES fell in the category of smaller business owners, skilled manual workers, craftsman, and farmers  The mean number of children in the household was 2.46

14.  The mean number of children with special health care needs was 1.25  For the target child there were 20 males and 4 females. The mean age was 9.88 years with a range from 3 to 33 years  The mean age of diagnosis was 2.13 years with a range from birth to seven years  The mean severity rating was 3.33

15. Diagnoses:

16. What daily activities are the most challenging for you and your family?  The most common difficulties reported by families were in regards to communication (8 families)  Taking extra time and adapting routine tasks (8 families)  Completing homework (8 families)

17.  Families also indicated challenges regarding eating meals (7 families)  Sleeping (3 families)  Hygiene (4 families)

18.  Being in public places (5 families)  Discipline (6 families)  Making friends (4 families)  Taking precaution to keep children safe/healthy (2 families).

19. How have you change/adapted routines for holidays to meet your family’s needs?  Most common response indicating that families have not made changes to accommodate holidays (9 families).  The second response indicating that families increase preparation of the child ahead of time (5 families).  Some families simply did not attend holiday events (3 families).

20. How does having a child with a disability/special health care need positively impact your family?  Most common response indicated that the family has learned empathy, acceptance, patience, gratitude, and perspective (16 families)  The second most endorsed response was that the family was closer with strong bonds (10 families)

21.  Families also indicated there were sibling benefits with increased understanding (5 families)  Increased bonds with the community (7 families)  Ability to educate others (5 families)  Career/path change (4 families)

23.  “..It is another world that I was aware of, but did not participate in or see.”  “As a naïve student, and without much clinical experience…idea was defined by reading. To my surprise…was not as I expected.”

24.  “What was I thinking? Leave it to Beaver with a disabled child guest star?”  Felt “tired just watching” the child and family  “Tremendously Enlightening”  “Each case is so different”

25. “It seems to work. It was tremendously enlightening to realize that a family with a child with disabilities can be as unconventional as any other and it can work and everybody can be content, happy even.”

26.  “The child is not his diagnosis, he simply lives with it.”  “They have a loving home that happens to look (and sound) a little different than others.”

27.  “You treat the family, not only the client referred to you. Family dynamics must be addressed or you will ‘lose’ a family.”  “Each family has its own unique challenges; and, only those families without challenges should be labeled outside the realm of normalcy.”

28. Sarah Meyer

29.  1. More comprehensive understanding of the resources available to families.  2. Increased confidence in taking on leadership roles and working within an interdisciplinary team.  3. Better understanding how to become involved with policy changes and advocacy

30.  It was a great learning experience for me!  I can't think of any suggestions for improvement

31. Brandi Whitaker

32.  Great networking and support from faculty and trainees  Getting experience working with multidisciplinary teams – learning to communicate effectively  Input from families about their needs

33.  Getting clinical hours at distance locations  Communicating with various groups ◦ E.g., South Main and Leadership projects  Communicating with various groups

34.  Keeping in mind that not all locations have the same technology set-up ◦ E.g., Idaho only has a TV and microphone  Forming groups based on location versus discipline

35. Holly Major

36.  Unpaid time from work to participate - $4,900  LEND Stipend amount +$5,000  Information, experience, & people that you can’t get anywhere else: PRICELESS

37.  Leadership Project: ◦ Past trainee presentations on the web site led me to think of some great ideas I’d love to pursue. Although the family interview project was interesting, it wasn’t one of the ones I was hoping to pursue (though it was my 1 st choice of those presented) ◦ REALLY tough to work in a group with people in different states. You don’t get the synergy that results from a face-to-face group meeting.

38.  Technology – definitely room for improvement polycom system, sound, time-outs, feedback, receiving information / assignments at the last minute, etc. and parking on campus was an experience I was happy to leave behind after graduation!

39. Gwen Mitchell 2009-2010 Autism Enhancement

40.  “I have been in awe at the vast collective knowledge.”  “I feel privileged to be included in this opportunity for professional and personal growth.”  “I am grateful to everyone for their contribution of time and resources.”

41.  Collaboration on project with people from multiple sites  Travel and coordination of site visits

42. Laurie Dimler

43.  The amount of experiences created throughout the year were amazing  Learned more than I had expected during the weekly LEND sessions  Feel that I have a better grasp of what living with a disability might look like  Getting to know people from different states

44.  This experience will enhance my classroom teaching regarding children with disabilities and their families, I hope to help students get better experiences  All was positive except dealing with the challenges of a group project from a distance.

45.  Brown I., Anand S., Fung W.L.A., Isaacs B. and Baum N. (2003) Family quality of life: Canadian results from an international study. Journal of Developmental and Physical Disabilities 15, 207-29.  Emerson E., Hatton C., Llewellyn G., Blacher J. and Graham H. (2006) Socioeconomic position, household composition, health status and indicators of children with and without intellectual disabilities. Journal of Intellectual Disability Research 50, 862-873.  Seligman M. and Darling R.B. (2007) Ordinary families, special children: A systems approach to childhood disability (3rd ed.). New York: The Guilford Press.