Community Development in Michigan March 4 2005 EHDI

Community Development in Michigan March 4, 2005 EHDI Conference Yasmina Bouraoui, MPH, EHDI Program Coordinator Lorie Lang, MA, CCC-A and Debby Behringer, RN, MSN

Community Development Model n n n Use National 1 -3 -6 goals as a framework Carry-over funds to finance projects Incorporate EHDI information into a variety of venues for parents and professionals Multiple community stakeholders as partners Focus on the families

Community Development Model Utilizing health behavior change model n Applying educational techniques to change behaviors of multiple stake holders to meet overall program goals n Utilizing a variety of venues for information delivery. (MI AAP article, hand outs, brochures, website, committees, educational CD Rom for physicians, other presentations to multiple stakeholders n Developing community advocates as messengers to improve outcomes n

Community Development Model Continued n n n Assessment and evaluation of stakeholder needs through survey of physicians, audiologists, hospitals and focus groups with physicians and parents Emphasize data and facts Utilize credible and respected sources: medical journals and studies, other physicians and stakeholders Chapter Champion Component Evaluate efforts

Community Development Activities n n n Prenatal Awareness –Use of EHDI brochures in prenatal programs and NCHAM videos to providers Post-natal –Use crib card after screening(English, Spanish and under development- Arabic) Community awareness and support -Delta Zeta Project - Physician groups, WIC, M/ISS, Public Health clinics – Chapter Champion program- Physician packets and MI AAP EHDI presentation, articles Culture awareness (Arab Chaldean Council, Native American Tribes, Migrant Clinics) EHDI County Brochure Resources (Samples)

Community Development Activities Continued n n Materials for: Parents- brochures, crib cards, parent notebook, Web page Hospitals and providers-brochures, resource guide, newborn screening video, Web page Physicians-CD-rom, hearing loss packets, web link, AAP materials, Web page (2005), NCHAM Physician survey Communities-EHDI County brochures, Audiology and Early Intervention/ Parent conferences

EHDI Resources and Literature • Web page www. michigan. gov/ehdi • Information Brochures on the EHDI process, Hands and Voices, Guide-By-Your-Side • Resource guide (English and Spanish) • Crib Cards • Physician Education CD for grand rounds/residency/student trainings (50+ attendees) • Early Intervention/Parent Conference. February 2004 and March 2005 • Audiology conference October 2003 and 2004

Parent Support in Michigan Hands & Voices Guide-By-Your-Side

Michigan Hands & Voices’ Mission Statement n We are an organization dedicated to Non-biased support to families who have children who are deaf or hard of hearing. n We will provide activities and information statewide to parents and professionals that may include outreach events, educational seminars, advocacy, parent-to-parent networking, and newsletters.

Michigan Hands & Voices’ Mission Statement n We believe that families will make the best choices for their child if they have access to good information and support. n Our organization represents people who use varying approaches to communication and assistive technology.

Our Values n n n Non-Bias Communication Philosophy Parent-to-Parent Support Meaningful Participation Effective Collaboration Setting High Standards in Education Accountability and Responsibility

A Balanced Partnership Professionals And Parents

Today in Michigan Hands & Voices n Parent to Parent Support n Parent Workshop (March 2005) n Newsletter n Resource Guide n Representation on Committees n Educational Advocacy and Training n Social and informational events

What’s New in Michigan n Developing a Web page for parents and interventionists n New Resources and Events-sent through the Hands & Voices listserv n Chat Room n Tutoring for sign language

Michigan Hands & Voices n n n 2929 Covington Court Suite 200 Lansing, MI 48912 -4939 517 -487 -0066 TTY/TTD 800 -968 -7327 TTY/TTD Michigan Director – Amy Lester – Lestera@michigan. gov – www. handsandvoices. org – Michigan Hands & Voices is partially funded by an MCHB grant through the Michigan Department Community Health

“Guide-By-Your-Side” Tag Team Approach to System Enhancement (adapted from WI GBYS)

In Michigan n n We have 83 counties Over 130, 000 live births a year 2/1000 children will be diagnosed with a hearing loss Average ID is now 2. 4 months

Michigan Statistics 100% of Michigan birthing hospitals screening without a legislative mandate n Screening-92% of infants screened, to date n Diagnostics-46% reported outcomes for bilateral and unilateral refers, (2002 data) n Early Intervention-57% of infants enrolled in services as reported by Department of Education (2002, data) n

The Challenge n Many Early Intervention Providers have had little to no experience working with very young children who were deaf or hard of hearing; MI EHDI is housed in Department of Health; Early Intervention housed in Department of Education

The Challenge n Lost to follow up rates are a concern n Difficulty accessing follow up information from stakeholders n Missing link from diagnosis to intervention n Parent desire to meet another parent who has been there

The Mission n To develop a community advocate model of service delivery

Parent Guides…. Goals Goal 1: Provide parents with the opportunity to establish a supportive relationship with an experienced parent of a child who is d/hh soon after they learn of their child’s hearing loss n Parent Guides will contact the family within 24 hours of receiving a referral. n Parent Guides will meet with the family within 10 days to guide and support the family.

Goal 2: Provide an understanding of the unique needs of infants who are deaf or hard of hearing. n Parent Guides will help the families that they meet to learn about the unique needs of d/hh children – Providing books and materials that highlight family stories – By highlighting the impact of hearing loss on a child’s access to communication and demonstrating early communication techniques (i. e. Promoting eye contact)

Goal 3: Provide unbiased information regarding communication options n Parent Guides – New “Parent Notebook” – Received training in the sharing of communication options, and presentation styles that may indicate bias

Goal 4: Link families to resources available locally, regionally and statewide n Parent Guides have received training – In the art of listening – Assessing and addressing the question behind the comment – To be ready to answer some of the first questions families might have – And to know how to find appropriate resources for families – Confidentiality and HIPAA Issues

Goal 5: Ensure that families are linked to their county’s interventionists Established rapport eases the introduction of the family to the Early On® program (EI)

Goal 6: Ensure that families are connected to other parent to parent resources n Parent guides are NOT advocates. Parent Guides can connect families with Michigan Hands & Voices for advocacy or ongoing parent to parent support

Training n Initial Training for Parent Guides – October 8 -9 2004 – Founders of Guide-By-Your-Side from Wisconsin provided the training – Ongoing training- Conference calls – Attending Early Intervention/Parent conference- March 2005 – 1 st referral January 2005

Nuts and Bolts n The process n Audiology/medical referral form n Guide-By-Your-Side Brochure/self referral n Guide handbook/policy manual n Tracking in house

MI EHDI Contact Information n n Michigan Department of Community Health Division of Family and Community Health -EHDI Program 3423 N. Martin Luther King, Jr. Blvd. Room #203 Lansing, Michigan 48909 Web www. michigan. gov/ehdi Yasmina Bouraoui, MPH, Program Coordinator (517) 3359398 bouraouiy@michigan. gov Lorie Lang, MA, CCC-A Audiology Consultant (517) 335 -9125 langlo@michigan. gov Amy Lester, BA, Parent Consultant (517) 335 -8273 lestera@michigan. gov

MI EHDI Contact Information n n Anne Jarrett, MA, CCC-A Follow-up Consultant (517)3358878 jarretta@michigan. gov Debby Behringer, RN, MSN Community Development Consultant (517) 335 -8875 behringerd@michigan. gov Paul Kramer, BA, Data Analyst Consultant (517) 335 -9720 kramerp@michigan. gov Erin Estrada, BA, Data Maintenance Consultant (517) 3358916 estradae@michigan. gov Ebone Thomas, General Office Assistance (517) 335 -8955 thomase@michigan. gov

Community Development Questions? ? ?