State Leaders Summit : Making a Commitment to Systems Change in Deaf Education
May 7, 8 & 9, 2007, Columbia , MD
Name of Facilitator/Presenter Nancy Grosz Sager
E-mail Address nsager@cde.ca.gov
Name of Recorder Diana Poeppelmeyer
E-mail Address diana.poeppelmeyer@tsd.state.tx.us
Topic title and brief description:
Collaborating with Medical Community
Key Issues or Points of Discussion:
If the first point of contact is the most powerful, how do we interface better with the medical community?
1. Concern that parents are not getting information from perspective of Deaf community and medical community brings their power of first contact and bias toward Cochlear Implant to parents.
2. Only about 3 hours of time is devoted to Hearing Loss issues in medical school.
3. How do parents get practicing pediatrician's attention?
4. Low incidence of hearing loss means most pediatricians will not work with a deaf or hard of hearing child often in their career. Need to help pediatricians realize that incidence of hearing loss doubles from at birth incidence by school age.
5. We tend to NOT talk about language when we talk about early discussions of hearing loss.
6. Working with audiologists is a concern.
7. Delivery tone of telling parents child has hearing loss tends to be negative and we need to change that.
8. Pediatricians see their role is to provide information about what they can do medically but not in terms of education. They are trained to provide medical advice, not educational advice.
9. Funding sources create constraints that keep providers from representing all opportunities or providing collaborative, joint services.
10. Don't have level of trust with other service providers that all will support parents/students choice for communication opportunities.
11. What we do to families in the most vulnerable hour is lead them to a mindset and artificial choices that result in cross-generational dysfunction.
12. Need to make sure that parents don't feel that each 6 months that they will be asked to reassess, change, start over with whatever new information comes out of the latest assessments.
Solutions/Strategies; Commitments of Participants; Improvement Suggestions:
- Getting audience with medical community (group of practicing pediatricians) is almost impossible, so we need to get to them when they are in medical schools. Pediatricians are the key gate keepers of information. Only about 3 hours of time is devoted to Hearing Loss issues in medical school. So suggestion made to keep an ongoing relationship with pediatricians in the schools.
- At least keep hearing loss on their radar. Use concept of medical home and developmental screening concept that pediatricians are supposed to be using as a way of keeping impact of hearing loss in their consciousness. Develop relationships with the pediatricians who develop training schedules.
- State Dept. approached audiologists to develop a flow chart for audiologists and it includes a link to early intervention. Also work with universities to educate up and coming audiologists about early intervention.
- When child fails second screening, a letter goes to the pediatrician informing him/her of responsibilities and it was made more of a liability issue.
- Need to include discussions of language in early discussions of hearing loss and make sure that we would talk about bilingualism (ASL/English) as an opportunity.
- Develop a standard of practice so that parents aren't forced into decisions when vulnerable. Pediatricians want next steps - Action steps that the Dr can quickly go to that says if A, then B and define B clearly and succinctly but have it ready for them as a quick reference. The standard of practice should be a coordinated effort that's comprehensive and inclusive of all communication opportunities.
- Partner with state EHDI coordinator as they are usually very connected to the medical community.
- Invite medical students to come and learn about deafness as part of their training.
- Every state has an EHDI chapter Champion and that pediatrician is identified on infanthearing.org.
- Information presented to parents at time of screening needs to be given in neutral terms and delivery should not be wrapped in assumption of grief.
- Take away myths and think of language as an opportunity. Remove myths that come with programs like Law and Order that presented an oversimplified, highly dramatic story related to Cochlear Implants. The Media gives a bad name to the Deaf community with their sensationalized stories.
- Unrealistic to assume pediatricians should fully understand all the issues. Instead have them know their responsibilities regarding the EHDI process and the importance of following the EHDI process.
- We need to understand ourselves and to educate parents to understand the pediatrician's advice in the context of medical solutions to what they see as a medical issues.
- Need a qualified, consistent assessment team that works across programs/geographic areas.
- Advice from a parent about receiving information...
- Reframe communication options along the lines of can a woman have it all? Both a career and a family? Yes...you can have it all but maybe not all at the same time.
- Take away notion that you have to choose.
- Create an information packet that includes all the information that doctors may need .
COMMITMENT:
That we will support families and children in whatever communication opportunities are working for that child.