Supporting Parents of Newly Diagnosed Deaf and Hard of Hearing Infants: THE IMPLEMENTATION AND IMPACT OF Parent Links

1. Supporting Parents of Newly Diagnosed Deaf and Hard of Hearing Infants: THE IMPLEMENTATION AND IMPACT OF Parent Links Generously Funded by The California Endowment A program of the California Coalition of Agencies Serving the Deaf and Hard of Hearing, Inc.

2. Providing Families With Infants (0-3 Years) who have a hearing Loss with Links To: *Services *Programs *Information *Parent-To-Parent Support

13. Parents are the single most critical factor in the education and future of their children.

14. “The feeling of connection may be one of life's sweetest moments-when someone understands you, really understands you, because they have been there”. Connecting with Families

15. Listen and Care Parent Link Consultants Personalities • Share and Seek Information • Collaborate and ARE Professionals

16. Active Listening, Grief and Communication Skills Indicators of Cultural Competences Principles of Family/Professional Collaboration Part C of IDEA and Calif. Early Start IFSP Process Principles NHSP Resource Development Documentation and Record Keeping Tools for Success

17. ULTIMATE GOALS PARENT LINKS ACTIVITES 1. Intake 2. Essential Links 3. Intensive Case Management 4. Medical Home 5. Referral Other Agency 6. Early Intervention Services 7. Research 8. Find or Develop parent groups 9. Presentations/ Trainings and Workshops to Parents 10. Collaboration with EI and Medical Home SHORT-TERM PARENTAL OUTCOMES 1. Improved Health Conditions 2. Language Acquisition 3. Improve life/Academic Outcomes 4. Improved Interface With The World 1. Increased Knowledge 2. Decreased Isolation 3. Increased Services 4. Increased Participation 5. Increased Coping 6. Increased Confidence 7. Increased Bonding 8. Improved Parental Negotiation Skills LONG-TERM FAMILY OUTCOMES 1. Improved Family Dynamics 2. Improved Family Advocacy 3. Increased Communication Skills with Child

18. Identify 500 resources and contacts including medical, educational, social, deaf related services and devices, support and other information for families for the 58 counties of California. Parent Links Program Objectives

19. Provide Family Culture presentations or trainings to providers within the Early Start system. Parent Links Program Objectives

20. Attend conferences, meetings and trainings in order to promote the program, provide educational resources to parents and providers, and represent the experience and needs of families with deaf and hard of hearing infants and toddlers. Parent Links Program Objectives

21. Provide intensive case management (ICM) to families with infants (0-3years). Parent Links Program Objectives

22. Ensure that the case managed families will be connected to a medical home and/or be enrolled in educational services. Parent Links Program Objectives

23. Develop a train the trainer curriculum whereby the PARENT LINKS Consultant will train Key Parent Links Volunteers. Parent Links Program Objectives

24. Develop 50 fact sheets in English and Spanish on a variety of topics related to hearing loss and educational issues of interest to families and providers. Parent Links Program Objectives

26. Conduct regional meetings or events for families throughout the State. Parent Links Program Objectives

27. The Parent Links program will be recognized by local, state and federal agencies as the representative of families with infants and toddlers who are deaf or hard-of-hearing. Parent Links expertise will be utilized during consideration of implementation, enhancement or change of program and services impacting on families in the Early Hearing Detection and intervention system. Parent Links Program Objectives

28. Explore impact of novel parent support program Improve focus and delivery of Parent Links Evaluation Purpose

29. Unstructured qualitative in-person staff interviews Semi-structured qualitative telephone client interviews Case reviews Mailed & telephone client surveys Evaluation Methods

30. Data burden concerns on already overwhelmed parents “Post-only” approach The failure of mailed surveys Move to staff-administered telephone surveys Evaluation Challenges/Limitations

31. Parents clearly need and desire support and education When asked how they felt when they first learned their child was deaf or hard of hearing, parents’ brought up two themes: The powerful, negative emotional impact of the news, and A lack of support or helpful information from professionals around them at the time Parent - To - Parent Support

32. All parents interviewed discussed the enormous emotional impact of learning that their child is deaf or hard of hearing “I could see from the reactions that something was very wrong. [When I left after the test] I had become very lost in myself. I became deaf and blind. I walked right into traffic. My husband pushed me out of the way.” Emotional Impact

33. “[I was] shocked and devastated. It was really devastating, a worst-case scenario … heartbreaking. This was my first child and I blamed myself.” “Relieved and overwhelmed. We had gone down a lot of speculation about what was wrong, so it was a relief to get an answer. But the answer opened a whole other can of worms. We were overwhelmed.”

34. Many parents mentioned that professionals present when their child was diagnosed as deaf or hard of hearing were neither informative nor supportive At a point when parents needed help the most, often they found the professionals around them either did not have information they needed or made the situation worse Lack of Information or Support

35. “I had been consistently advised by doctors … that there was no need top work on my daughter’s communication ability since it was severely limited and other disabilities needed attention.” “The nurses…wouldn’t help us at all. They kept saying he’s never going to hear, he needs surgery. They wouldn’t answer our questions.”

36. Parents are extremely positive about Parent Links and the impact it has had on them and their children “No one else said you are going to be OK, [my child] is going to be OK.” “Parent Links has been very positive and extremely helpful to my family … It brought us over a pivotal time in our [child’s] life and in our education.” Overall Assessment of PL by Clients

39. “I learned being deaf in and of itself doesn’t have to limit you … deafness is a big part but not the only … not the defining part of who you are.” “It is important to know our kids are OK just the way they are and there are other parents going through the same thing … I never saw this stuff before. How many parents leave the hospital with a deaf child?” Reducing Parents Sense Of Isolation

40. A crucial aspect of reducing parent’s sense of isolation was clearly connecting them with other parents of deaf and hard of hearing infants “We learned we are not alone. She hooked us up with other families. It was important to hear other people’s experiences. All we wanted to know is that they can be happy, normal children. Parent Links helped us greatly with ‘Oh, my gosh!’” Connecting with Other Parents

42. Meeting other parents with deaf or hard of hearing children or meeting deaf or hard of hearing adults is a key element to helping parents of newly diagnosed infants cope “It was very important and helpful to see how other parents are faring. Meeting parents of deaf children and deaf adults to see how they dealt with it was very important.” “[Going to events] helped me by being able to see young and old adults happy in their world of deafness. We have met successful adults and that gives me hope to continue to mix and introduce [my child] with peers and role models that are deaf.”

43. Emotional support is the first thing parents talk about when they discuss Parent Links, a fact captured in one quote: “Emotional support is 95% of what Parent Links has done for me.” “The most important thing is mostly [my consultant] just being there.” “She’s been there emotionally, to listen to me, acknowledging I’ve got all these feelings. Someone who doesn’t have a child with a handicap doesn’t understand.” Emotional Support

44. A key element to being able to understand and provide the needed support stems from the fact that all of the consultants have been through the same experience “That [she] shared her own experiences helped, that her own [child] is grown and has a family, raised our own awareness that our [child] can be OK.” “It was very supportive and good to hear from someone who’s been through it.” Common Ground

45. To a great extent this is because they have no knowledge about the condition or how to deal with learning their child is deaf or hard of hearing A clear strength of Parent Links is the vital information they provide parents about the condition and how to deal with it proactively and effectively Education

46. “Before Parent Links I was not aware of all my options or specific areas that are so important for deaf kids.” “The educational material on the Parent Links website and other websites [she] sent me have been very helpful.” “[My consultant] hooked us up with a lot of information.” ““[My consultant’s] been a book of knowledge to me.”

47. All parents reported Parent Links has empowered them to help and advocate for their child and that their child is doing better because of this empowerment “I am no longer confused or lost. I have direction and feel empowered. My [child] now is really doing well and has lots of interventions specific to her.” “Because of Parent Links I am better prepared to advocate. I am [my child’s] best advocator. [My consultant] has really empowered me … Without her I don’t know that I would be as far along now.” Empowerment

48. Connecting parents with relevant professionals is another critical aspect of what parents said Parent Links provides “At the picnic we got to meet this highly respected interventionist from [our community] … it was very useful to speak with him.” “We asked for the opportunity to observe the alternative programs to address the communication and educational needs for a deaf child. The visits to several programs were arranged for us by Parent Links.” Connections with Professionals

49. Findings show that early support and education is vital for parents of newly diagnosed deaf and hard of hearing infants, helping them cope and empowering them to more effectively advocate for their child This can only lead to better health and life outcomes for these children Implications

50. Parent Links has been unsuccessful to date in acquiring funds to continue This appears to be a factor of parent support services for specific disabilities being outside existing funding streams of federal and state dollars and deafness being too rare to be a health priority for the big health-oriented foundations Challenges