Assessing Family Needs, Strengths, and Successes

Transcription

1 Assessing Family Needs, Strengths, and Successes AG BELL CONVENTION 2014 ORLANDO, FL JUNE 27, 2014 Oberkotter Foundation Presentation on Family Engagement and Outreach

2 Context for Oberkotter Foundation s Focus on Families

3 Oberkotter Foundation: A Brief History The Foundation was created in October 1985 by Paul and Louise Oberkotter, together with their personal attorney, George Nofer. Funding interests of the Foundation have included Alzheimer s, Diabetes, Celiac and Deafness, with the Trustees deciding to focus primarily on deafness and the support of LSL services in the United States. Since 1985, the Foundation has made grants to 175 organizations for more than 500 projects and has given away more than $370 million in grants. Beginning in 1994, the Foundation began focusing on increasing LSL options for families around the country and has provided funding support to 26 programs providing services to children and families, ongoing operating support to more than 25 additional programs, and substantial operating support for more than 12 graduate professional training programs. In June 1998, we released the film Dreams Spoken Here to raise awareness of the LSL option. Millions of our films and materials have been distributed free of charge. That same year, we launched oraldeafed.org at the time, a pioneering website providing information for families regarding LSL programs around the country. In early 2012, the Trustees adopted a new strategic framework recommitting our efforts to: (1) generating greater national awareness; (2) ensuring families have access to LSL early intervention services; and (3) building networks of professionals. 2 2

4 Oberkotter s Strategic Initiatives Create public Awareness of LSL as a familycentered language solution for children who are DHH that leads to a typical early learning path to success Provide direct Support to families who have chosen LSL through online solutions and innovative family-to-family mentoring programs Establish an innovative, 21st Century Professional Learning Center, LSLogic, to increase Capacity Facilitate Collaboration and Transformation for our traditional grantees Drive the National Conversation around eliminating barriers created by health disparities, systems and geography Through Grantmaking Family Engagement and Outreach Initiative Professional Learning Center Initiative Leadership & Partnership 3 3

5 A parent s decision to quickly follow up with rescreening/diagnostics and choosing an LSL outcome are dependent on: Their own beliefs, motivations and capacity The living conditions, organizations, communities, cultural norms, and policies that either facilitate or inhibit their decisions and actions The influence of their social relationships with family and friends as well as the key influencers within the Early Hearing Detection and Intervention systems that support them 4 4

6 What does the Literature say about barriers to a smooth path for families? First Newborn Screening 38% took more than 2 months to get through this phase with a max of 9 months. Delays caused by: Multiple Rescreenings (2-10) Transient middle ear problems Physician said that there was no need to get a diagnostic ABR Professional said that no ABR could be performed until baby was old enough for sedation Additional health conditions/ appointments Diagnostic Evaluation 17% took more than 2 months to get through this phase. Delays caused by: Multiple ABRs due to lack of sleep, equipment problems, question of conductive vs. sensorineural cause 1 st one was normal, subsequent ones confirmed hearing loss Hearing Loss Confirmation Hearing Aid Fitting 34% took more than 1 month to get through this phase. Delays caused by: No recommendation of hearing aids (mild, progressed later or unilateral unaidable that later progressed to bilateral) Told to wait for 6 months Decided not to pursue hearing aids because parents noticed response to sound at home Difficulty getting hearing aid fitting appointment Could not afford the hearing aids Physicians thought a behavioral audiogram was needed EI Enrollment 11% took more than 2 months to get through this phase. Delays caused by: Chose not to start intervention until months No unilateral services, waited until bilateral Extended time before visit scheduled The data for this detailed timeline came from: Holte et al.; Factors Influencing Follow Up to Newborn Hearing Screening For Infants Who Are Hard of Hearing; Am J of Audiology, 2012; 21; ; Originally published online on May 14, The study population included 193 hard of hearing participants with a congenital hearing loss who did not pass newborn screening. \ Overall conclusions include: 2/3 of children did not reach all 3 benchmarks by 6 months Compliance was over estimated because of high maternal socioeconomic status in the study Complete ABRs are needed the 1st time No more than 1 rescreen is needed Most vulnerable populations are at highest risk and are not often included in studies like this one The only demographic factor that influenced extended follow up was maternal education, Having a mother with a graduate degree gave those children a 7 month advantage over children born to mothers with a high school education. 5 5

7 Select challenges to families Select Influencer-related Challenges Inconsistent provision of information by pediatricians AAP Chapter Champions who are inactive or are do not take on education responsibilities Low levels of Physician knowledge about hearing loss Inappropriately trained professionals providing services in Early Intervention (EI) programs Lack of seamless protocols for connection to EI EI does not support Listening and Spoken Language programs as part of the system Other System Challenges Birthing hospitals do not perform all rescreens Home births are not always referred for screenings Families do not have full access to medical homes Inadequate collaboration between Early Hearing Detection and Intervention (EHDI) and Early Intervention (EI) Lack of Advisory Boards for EHDI and EI Inadequate web-based materials for families All infants with any degree of hearing loss are not always included in EI services Roush, J. (ed.) A Strategic Analysis of State Early Hearing Detection and Intervention Programs. Summer 2011, Volume 111, Number

8 Lessons from Communities of Excellence Up to 92% of families are choosing LSL in order to communicate with their child in the family s home language BEGINNINGS for Parents of Children Who are Deaf or Hard of Hearing, Inc. Changes in Parental Communication Choice Over 14 Years Communication Choice FY01 FY06 FY10 FY11 FY12 FY13 FY14** Listening and Spoken Language* 69% 83% 89% 91% 88% 92% 92% ASL 4% 3% 4% 2% 4% 2% 2% Cued Speech 1% <1% <1% - <1% <1% <1% Total (or simultaneous) Communication 21% 14% 6% 8% 8% 6% 6% Other 5% Our definition of a Community of Excellence is a place where families are given complete information on all language choices, information on the family s responsibility once a language is selected, and families have equal access to all options for EI services to support the choice. *Includes both oral and auditory/oral options. ** Through April 30, months. 7 7

9 Our Market Research on The Parent Experience

10 Our Market Research Methodology STEP 1 Professional Interviews (Pre and Post Research) STEP 2 Passion & Pain Smartphone App: Strugglers & Survivors STEP 3 In-Home Opinion Parties : Survivors STEP 4 Phone Interviews: Strugglers 9 9

11 Market Research Goals Make it easy for parents to recognize and capture their experiences in full emotional detail using video, audio, photo and other expressive techniques. Encourage parents to input daily passion and pain points related to their children, doctors, healthcare system, school, etc., with additional emphasis on the problems they run into in life. By tracking these parents in real-time over 7 days, we were better able to understand: Who they turn to for trusted information Their relationship with the professionals Shortcuts they use to bypass the system!!! When they need help Their worries and fears for their child Their hardships 10 10

12 They had a lot to say 15 Participants 48 Questions 234 Responses 281 Videos 235 Audio Recordings 85 Photos 109 Passion Moments 91 Pain Moments 11 11

13 From anger to extreme sadness, these parents feel like they are on a derailed emotional roller coaster Heartbroken When I discovered my child had hearing loss I felt sad. Very depressing and saddening Heartbroken because I felt so bad for her that she was going to have to face this for the rest of her life and I felt sad for my husband and I because we would have to face this challenge as well I was thinking of all the things in life that he would miss out on. We felt sad because we worried about how much she was able to hear and wanted her to hear us tell her we loved her. Helpless I felt nervous because I didn t know how to help him. Beyond Devastated I felt really devastated Devastated because I didn t want my son to have a disability and at the time I didn t know of all my options to correct it Guilt I felt like I let my husband down, it was a weird feeling. I didn t give my husband the perfect child. I wished it could be me and not her. Disbelief & Denial When we found out he had profound hearing loss, it was quite unbelievable, we were not prepared to accept it. We were in denial for about a week. I couldn t believe that this was happening to us Shocked & Surprised We felt more shock because we did not know what to do or think because we didn t have any knowledge of the subject Literally it was a shock out of the dark.that is what made it difficult getting out of that shock and then the barrage of information afterward

14 The research uncovered additional barriers that lead to inaction Conflicting Professional Info Information Overload Indecision & Inaction Jumping from professional to professional, too much info and limited access to critical resources can lead to problematic coping that isn t solution-focused but instead emotion-focused. Public Resources Insurance Companies Things are so much more emotionally challenging right now. I don t know what to do. Misunderstood Services 13 13

15 Parents want their child s world to be wide open Society It s a spoken world out there. Parents express that LSL provides hope for the full development of their child by enhancing their natural form of LANGUAGE, integrating them with the immediate FAMILY, the SCHOOL system, and giving them the skills & confidence to succeed in SOCIETY at large. School/Peers Family Self With LSL, they can achieve anything

16 In the minds of these parents, their child s world looks like this without hearing or speech Instead of being totally capable of doing anything, parents see their children as being limited in their potential. Signing and other non-lsl options are viewed as cutting the child off from fully developing & integrating with the world around them. Society School/Peers Family Self Life is played out in a smaller piece of the pie: the family members who know the language, the classes where it s taught the culture that has been customized for them

17 Diagnostic Hearing Loss 16 16

18 Only a death in the family was identified as more devastating or challenging Q: Rate how much you agree/disagree with the following statement: Dealing with my child's hearing loss has been the most challenging part of my life." AVG: My father died when I was 11, leaving me to help raise my four-year old twin sisters. This is almost just as challenging Totally disagree Totally agree 17 17

19 How the Market Research Shaped Our New FEO Projects

20 The research identified Oberkotter s key program opportunities For these parents, their whole world falls apart when they first hear their child s diagnosis. Parents are in search mode when they really aren t in an emotional state to make any decisions. The clouds part and the sun begins to shine again when they find a source of support. There is a lot of pressure knowing that parents are going to learn to be their child s best teachers. Other parents are the biggest lifesaver and go-to source for strength, support, and answers. These parents are going to become stronger people than they ever thought possible. Be as close to moment of diagnosis as possible. Be a resource they turn to in their search mode that also understands their current state of mind. Help them find a source of support right away. Provide parents with the tools and support of the new teacher roles they are taking on. Find a way for parents to find other parents in their area. Help celebrate their victories big and small

21 Goals for our Family Engagement and Outreach Activities Goal 1: Creating the general awareness message Goal 2: Providing support to parents during each step of their LSL journey 20

22 Oberkotter Foundation s Conceptual Framework for Family Engagement and Outreach (FEO) 21 21

23 Family Influencer Map: Current state of where influencers enter the family path OB/GYNS Nurses/Screeners Extended Family/Friends Pediatricians Case Managers/Family Support Personnel Audiologists Adults who are DHH Other Parents of Children who are DHH Otolaryngologists Teachers of the Deaf EI Professionals Speech Language Pathologists Mainstream Educators 22 22

24 Parent to Parent Best Practices Model Design Evaluation How and When Activities Recruitment and Training 23 23

25 Marketing Plan Ecology Create Awareness Goals Provide Support Partners Baby Center Pregnancy Partners Facebook You Tube Twitter Social Analog Parenting TV What to Expect New Website Central hub for aggregated, user generated, and original content Search OLA Schools Radio Sphere of Influencers Digital Print Physicians Digital OLA Search Other Moms Bloggers 24 24

26 Our Family Engagement and Outreach Initiative meets the families where they are and wants families to be aware, supported and empowered to live their DREAMS for their CHILD

27 Please visit us at Booth 127 in the Exhibit Hall to learn more about LSLogic and our Family Engagement and Outreach (FEO) Initiative 26 26

28 Carianne Muse: Contact Information Director of Family Engagement and Outreach myprofoundday.blogspot.com on on Twitter DreamSpoken Board on Pinterest Living the Dream 27