My View On Services. Karen Aguilar, MJ, Coalition Director

Transcription

1 My View On Services Karen Aguilar, MJ, Coalition Director

2 Reasons for the Survey Funders Data instead of anecdotal Use for programming going forward Reduce Lost to Follow-up

3 Thank You Young, A.M., Gascon-Ramos, M., Campbell, M., and Bamford, J. (2009) The Design and Validation of a Parent-Report Questionnaire for Assessing the Characteristics and Quality of Early Intervention Over Time J. Deaf Stud. Deaf Educ. 14(4):

4 The Revised Survey City: Zip code: Year child was born: Was your child born in Illinois (please circle): Yes No Did your child pass newborn hearing screening: Yes No At what age was your child identified with a hearing loss? Years: Months: Diagnostic Results: Unilateral (one ear) Bilateral (two ears) Has your child been identified as having Auditory Neuropathy/Dys-synchrony: Yes No Degree of Hearing Loss: Right Ear: Mild Moderate Moderate-Severe Severe Profound Left Ear: Mild Moderate Moderate-Severe Severe Profound Are you a: mother father grandparent guardian other

5 The Revised Survey Is your child now or previously enrolled in intervention services (early intervention through the state or private)? Yes No Did it begin by 6 months of age (please circle)? Yes No Does/Did you child have an IFSP (Individual Family Service Plan) through your local Child and Family Connections (Illinois Early Intervention) office? Yes No Did your child receive services privately (through a private school or provider)? Yes No At the time of this survey, what is your primary language used at home? English Spanish Polish Sign Language Other At the time of this survey, what is the primary communication mode used in your home with your child with hearing loss: Oral/Speech ASL Signed English Cued Speech Total Communication

6 Please circle any of the evaluations that your child has received to date: vision genetics speech and language occupational evaluation physical evaluation developmental evaluation other: Please circle any therapies that your child has had to date: speech and language The Revised Survey occupational evaluation physical evaluation developmental evaluation other: Who first explained to you the different ways to communicate with your child? Developmental Therapist Developmental Therapist/Hearing Service Coordinator another parent audiologist ENT Other Early Intervention provider:

7 The Revised Survey What challenges did you experience related to getting your child s hearing test completed after leaving the hospital (check all that apply)? My baby was not screened at the hospital Unsure of where to go after our baby failed the screening Screening test results were not shared with us Delay in appointment availability ABR test only available under sedation Missed appointments due to: Transportation problems Unable to afford the test Our baby had other medical/health problems Our baby had middle ear fluid We live far from the testing clinic Repeated testing was needed Other, please specify:

8 The Revised Survey When you first found out that your child had a hearing loss, many concerns arose in the following weeks. Place an X next to the top 3 concerns you experienced. Your child s medical needs Your family s finances Your child s success in school Your child s ability to make friends Your child s ability to communicate with the family Who would pay for your child s hearing aids Where your child would get speech and language therapy Other, please specify:

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13 If enrolled in the Guide By Your Side program, who is your Parent Guide? Please indicate areas for which you would like additional information. You will be asked in the final question to provide your contact information (if you wish to be contacted): To receive a free copy of the "Children and Hearing Loss." To be matched with a Guide By Your Side Parent Guide. To be contacted by Illinois Hands and Voices to receive information about parent activities. To volunteer with parent organizations or at the state level with the IL EHDI program. Please contact me with additional information and resources for my family. Name: Address: City, State, Zip: Phone: ( )

14 Number of Parents Surveyed: 55 (not all parents answered all questions) Location: Statewide Illinois Parent Pool: CHOICES for Parents, GBYS Parent Guides, Developmental Therapists/Hearing, IL Hands & Voices, Parent Conferences

15 46 children born in Illinois 8 born in other states 1 born in China Primary Language Used at Home: English: 43 Spanish: 2 Sign Language: 3 Other: 7

16 Year Child Was Born 2010 (4) 2011 (3) 2012 (1) 1970s (2) 1990s ([VALUE]) 2009 (7) 2007 (5) (13) 2008 (5) 2006 (3)

17 Screening Did your child pass newborn hearing screening? Yes: 40% No: 60%

18 Challenges experienced related to getting hearing test completed after leaving the hospital Our baby was not screened at the hospital Unsure of where to go after our baby failed the screening Screening test results were not shared with us Delay in appointment availability ABR test only available under sedation Transportation problems Unable to afford the test Our baby had other medical/health problems Our baby had middle ear fluid We live far from the testing clinic Repeated testing was needed Other (please specify) Our baby Unsure was of not where screened to Screening go after at the test our hospital baby results Delay failed were in the appointment not ABR screening shared test only with availability available us Transportation under sedation Unable Our problems baby to afford had other test Our medical/health baby had We middle live problems far ear from Repeated fluid the testing testing clinic Other was needed (please specify) Series2 Other: Ambiguous test results, machine wasn t working, hearing was not checked, child was adopted, even though child passed test was repeated due to family history of hearing loss, pediatrician tested child at 18 months, audiologist tested repeatedly.

19 Age of Identification 3-5 years (7) 6+ years (1) 0-6 months (22) 1-2 years (15) 7-12 months (5)

20 EI by 6 months? Did intervention services begin by 6 months of age? Yes: 57% No: 43%

21 EI Services? Is your child now or was s/he previously enrolled in intervention services (Early Intervention through the state or private)? Yes: 88% No: 12%

22 Private Services? Did your child receive services privately (through a private school or provider)? Yes: 55% No: 45%

23 Type of Hearing Loss Please indicate the degree of hearing loss for you child by ear Mild Moderate Right ear Left ear Moderate Severe Severe Profound Answer Options Mild Moderate Moderate Response Severe Profound Severe Count Right ear Left ear

24 Unilateral (5) Bilateral (43) Is your child's hearing loss: Unilateral (one ear) Bilateral (two ears)

25 Communication at Home? At the time of this survey, what is the primary communication mode used in your home with your child with hearing loss: 90.0% 80.0% 70.0% 60.0% 50.0% 40.0% 30.0% 20.0% 10.0% 0.0% Oral/Speech ASL Total Communication Signed English Cued Speech Oral/Speech (36); ASL (5); Signed English (7); Cued Speech (3); Other (6) : TC, CASE, ASL Facial Expression, ASL & Contact Sign, 2 English

26 When parents first found out that their child had hearing loss, the following concerns arose: Where SLP (18) Other (4) Medical Needs (23) How to pay for hearing aids (11) Family's finances (10) How child will communicate with family (28) Child's success in school (31) Child's ability to make friends (14) Other: What do I need to do, child s safety, find qualified unbiased professional, acceptance

27 Who first explained to you the different ways to communicate with your child? Other (11) DT (3) DT/H (12) Other EI Provider (6) ENT (2) Service Coodinator (5) Audiologist (9) Another Parent (2) Other: Didn t need it as I am Deaf, research on the internet, another child s deaf parent, GBYS Parent Guide, ISD Outreach, I did through my own research

28 What Professionals Do You Work With? Do you and your child receive services from: Answer Options Yes No Response Count Pediatrician Developmental Therapist/Hearing Deaf Mentor Cochlear Implant Team Member Were you offered this service? Answer Options Yes No Response Count Pediatrician Developmental Therapist/Hearing Deaf Mentor Cochlear Implant Team Member

29 How much did working with this provider reduce your level of stress? Answer Options 1 = Not at all (no impact on stress) = Very Much (Greatly decreased stress) N/A Rating Average Response Count Pediatrician Developmental Therapist/Hearing Deaf Mentor Cochlear Implant Team Member

30 How much did working with this provider improve your ability to communicate with your child? Answer Options 1 = Not at all (no ability to better communicate) = Very Much (Greatly improved ability to communicate with your child) N/A Rating Average Response Count Pediatrician Developmental Therapist/Hearing Deaf Mentor Cochlear Implant Team Member

31 How much did working with this provider increase your comfort level with hearing loss? Answer Options 1 = Not at all (not more comfortable with hearing loss) = Very Much (much more comfortable with hearing loss N/A Rating Average Response Count Pediatrician Developmental Therapist/Hearing Deaf Mentor Cochlear Implant Team Member

32 How important are the following for you now? Answer Options Information about available services Information about how to communicate with my child who is deaf/has hearing loss Knowledge about how deaf children grow up Professionals help me to make my needs known and to fight for things necessary Coordination of all of the services, and professionals involved with my child and family Support to make decisions about my child who is deaf/with hearing loss and my family Confidence building in parenting a child who is deaf/with hearing loss Contact with other parents of deaf children/with hearing loss (parentto-parent support) Not important Somewhat important Important Very important Rating Average Response Count

33 To what extent are professional services... not at all to a great extent 5 Answer Options Response Count Trusting you as the expert Taking into account your family s culture and lifestyle when working out support plans. Providing an optimistic view of the future How important is this for you now? Answer Options Somewhat Very Response Not Important Important Important Important Count Trusting you as the expert Taking into account your family s culture and lifestyle when working out support plans. Providing an optimistic view of the future

34 Next Steps Encourage Spanish surveys to be completed - analyze and compare results What do you want to know?

35 Mission CHOICES for Parents is a statewide coalition of parents and professionals ensuring that children with identified hearing loss and their families receive the necessary resources, advocacy, information, services and support. CHOICES for Parents is committed to providing unbiased information.

36 Created in 2001 to identify cracks in the system from identification through transition Case manage families through the process 6 original coalition members Fiscal Agent is non-profit organization

37 Coalition Members Alexander Graham Bell Montessori School & AEHI Ann & Robert H. Lurie Children s Hospital of Chicago Catholic Office of the Deaf Chicago Hearing Society a division of Anixter Center Child s Voice Cochlear Americas Deaf Access Program Mt. Sinai Foundation for Hearing and Speech Rehabilitation Gallaudet University Regional Center Hearing and Vision Early Intervention Outreach HITEC Illinois Association of the Deaf Illinois Deaf Latino Association Illinois Early Hearing Detection & Intervention Program Illinois Hands & Voices Illinois Service Resource Center International Center on Deafness and the Arts Northwestern Department of Communication Disorders and Sciences Rush University Department of Communication Disorders and Sciences Sertoma Speech and Hearing Center University of Chicago Pediatric Hearing Loss Program University of Illinois Hospital and Health Sciences System

38 Informational Material Created Children and Hearing Loss binder (in English and Spanish) free to parents Technology for Your Child informational material What Our Pediatrician Should Know informational material Web site of information and resources (in English and Spanish)

39 READ Program Distribute books from the American Library Association to encourage reading to children who are deaf or hard of hearing

40 IDLA Co-sponsor of the Illinois Deaf Latino Association Deaf Awareness/Parent Events Sign Language classes free to parents taught in spoken Spanish

41 EHDI Day Honor those who have gone above and beyond Proclaimed by the Governor March 14, 2014

42 Partner Agency Signed contract with Hands & Voices for bring Guide By Your Side to Illinois (house the GBYS Program instead of H&V). Fiscal agent is Anixter Center (holds the 501(c)(3) for both agencies. Anixter mission -to enhance the lives of individuals living with or at risk of disabilities to live, learn, work and play in the community

43 Contact Information Karen Aguilar, MJ, Coalition Director CHOICES for Parents PO Box Chicago, IL Phone: Mobile: