Surveying Pennsylvania s Families of Young Children who are Deaf/Hard of Hearing

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Surveying Pennsylvania s Families of Young Children who are Deaf/Hard of Hearing Results of the FY 2016-17 Family Satisfaction Survey & Record Review

Your chance to think how to use this information in your Early Intervention Program.

Methodology Infants and toddlers in the Early Intervention who had an active IFSP in FY 2016-17 and Diagnosed with deafness or hearing loss Diagnosed with deaf-blindness IFSPs with Special Instruction-Hearing Had a D/HoH release of information

Two Methods to Collect Data PELICAN-EI

Survey Design 1. Experiences in Early Intervention 2. Satisfaction with the Quality of EI Services 3. Demographic Information 4. Comment Section

Survey Dissemination Cover letter and survey sent Two mailings December 7, 2017 January 12, 2018

Survey Dissemination 665 surveys were mailed 31 returned as undeliverable Total of 119 surveys were returned Return rate of 19%

Early Intervention Record Reviews Random sample of 10% for a total of 64 infants and toddlers PELICAN-EI

Consistency in PELICAN data ensures that we are reaching the right children and families

Mailed Survey Results

Moms turned in their surveys! Mother 90% Father Grandmother Foster Parent 0% 20% 40% 60% 80% 100%

20 2 5 1 6 2 1 5 3 2 0 1 1 5 0 1 2 2 4 1 2 1 2 2 1 0 0 6 2 0 3 5 3 3 1 1 17 2 0 18 0 1 0 1 1 2 4 12 Surveys were received from 83% of the EI IT Programs

Most children had a Sensorineural HL Sensorineural 55% Conductive 13% Mixed 6% I don't know 26% 0% 10% 20% 30% 40% 50% 60%

Most children had a Profound HL 40% 30% 30% 20% 15% 21% 19% 10% 3% 6% 6% 0% Slight Mild Moderate Mod Severe Severe Profound I don t know

44% have additional disabilities

Be prepared for a child who Has a severe hearing loss Has additional disabilities

Top Findings from the Family Satisfaction Mailed Survey

55% of the infants are enrolled in Early Intervention before 6 months.

Most hearing services began before 6 months.

1 3 6 Hearing screening test for all babies no later than 1 month of age Diagnostic evaluation by an audiologist no later than 3 months of age Early intervention no later than 6 months of age

Learn more about EHDI and the goals for early identification of children with a hearing loss www.paearlyhearing.org

Early Intervention Services 98% In EI, my child was assessed in all developmental areas to determine his/her progress

Early Intervention Services 99% In EI, I was given access to at least one staff person who is qualified in the areas of deafness and hearing loss

Early Intervention Services 30% In EI, does your child have a Communication Plan in addition to the IFSP/IEP?

Learn more about how to use the Early Intervention Communication Plan www.eita-pa.org

Communication Plan Training Developing an Early Intervention Communication Plan and Achieving Effective Hearing Aid Use June 25, 2018 June 26, 2018 June 28, 2018 PaTTAN East PaTTAN Harrisburg PaTTAN Pittsburgh Register at www.pattan.net

83% In EI, I received parent support information about Hands and Voices Guide By Your Side PA.

91% I am satisfied with the support provided by my Guide By Your Side Parent Guide.

Parents are connecting. 88% In EI, I was given opportunities for contact with other parents of children with deafness or hearing loss. 45% In EI, I had access to professionals and/or other adults in a variety of different roles, who are themselves deaf or hard of hearing.

Help parents connect to other parents GBYS P2P

Guide By Your Side Go to the families page at: www.paearlyhearing.org Contact: Anne Gaspich agaspich@pattan.net

Parent to Parent of Pennsylvania www.parenttoparent.org

Parents are receiving Getting Started. 92% In EI, I received written materials to help me support my child, including the Office of Child Development and Early Learning booklet Getting Started. 83% The information provided in the booklet Getting Started was reviewed with me by a service coordinator or other person.

www.eita-pa.org Find a copy of Getting Started: Resources for Parents and Families of Infants and Young Children with Hearing Loss

I was informed 71% that I could have an active role in the EI program in my area.

Parents are given information about a variety of communication options. 100% 80% 60% 40% 20% 0% L&SL ASL Cued Speech Total Comm 2010 2011 2012 2013 2014 2015 2016 2017 FY 2016-17

In EI, I was given information about different ways my family and I could communicate with my child. These included using:

Listening and Spoken Language

American Sign Language

Total Communication

Cued Speech

In EI, I was given information about a variety of hearing technologies

Hearing Aids

FM System

Cochlear Implants

Make sure that parents have unbiased information about: Communication options Hearing technologies

Parents are satisfied with the information they are receiving. 95% 96% I am satisfied with my EI Service Coordinator's level of knowledge regarding hearing loss in infants and young children I am satisfied that in EI the information I received about a variety of different languages and communication options/methods was provided in an unbiased way.

Overall, my 98% child s EI services made me feel better equipped to care for his/her needs.

EI Record Review Results PELICAN-EI

Most infants are using some type of amplification.

Most families are choosing listening & spoken language as their child s communication option.

Most children receive BOTH special instruction- hearing & SLP services

Like Infants, Preschoolers receive both SLP and Hearing Services Special Instruction Only 8% Hearing Services Only 8% SLP Only 33% BOTH Hearing & SLP Services 50% 0% 10% 20% 30% 40% 50% 60%

How quickly are children with hearing loss are getting to the Early Intervention program?

63% of the newborns screened are enrolled in EI by 6 months.

Infants who are referred at their NBHS reach Early Intervention by 6 months.

Continue outreach to local hospital Newborn Hearing Screening Programs & local audiologists

Survey Next Steps 1. Annual survey to go out in October/November 2018 2. What are your critical questions about children who have a hearing loss?

For More Information

Communication Plan Training Developing an Early Intervention Communication Plan and Achieving Effective Hearing Aid Use June 25, 2018 June 26, 2018 June 28, 2018 PaTTAN East PaTTAN Harrisburg PaTTAN Pittsburgh Register at www.pattan.net

Great Start in Early Intervention: Focus on Young Children with Sensory Impairments and TBI August 1 3, 2018 Penn Stater Conference Center Hotel Registration Coming Soon at pattan.net

Online Courses About Children with a Hearing Loss www.eita-pa.org