ITEM Coalition Press Conference

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ITEM Coalition Press Conference

Thu, 07/17/2003

Congressman Langevin, Members of the ITEM Coalition Steering Committee, Members of the Press, Friends and Colleagues, and Honored Guests:

I appreciate this opportunity to offer my support for the goals and principles of the ITEM Coalition.

My name is Terry Portis and I am the Executive Director of Self Help for Hard of Hearing People, the nation’s foremost consumer organization representing people with hearing loss. Our national support network includes an office in the Washington, DC area, 13 state organizations and 250 local chapters across the country. We provide information and support for the 28 million people with hearing loss in our country. Our organization focuses on the 26 million Americans who retain some of their hearing, but who are hard of hearing to the point it affects their ability to work, go to school and fully participate in community life.

I am not only here as a professional, but also I am also here as a family member of someone with hearing loss. As the result of a childhood accident, my wife Denise has a degenerative hearing loss that has progressed to the point that she struggles with everyday ordinary activities such as talking on the telephone, carrying on a conversation in a coffee shop, or even watching television. Denise has courageously faced this challenge despite the frustration and anxiety that come with hearing loss.

Continuing technological advances now make it possible for people with hearing loss to regain some of their lost communication ability. Hearing aids are more effective than ever before in enhancing residual hearing and personal assistive devices may give people the ability to continue in work and community life in ways they could not before. Unfortunately, these very necessary medical devices are seen as elective or not vital to a person’s quality of life and independence.

In our family we have experienced the frustration of knowing that help for hearing loss exists, but be denied its benefits because our medical coverage did not pay for it. We have seen firsthand how coping with hearing loss and the communication problems it brings could be improved, if only we could have access to the assistance that widely available technology brings.

We are here today because we want the men, women and children who face the challenge of hearing loss to be able to benefit from hearing aids and other technology assistance so they might be able to fully participate in school, work, and community life. We do not want people to isolate themselves from American society because they cannot communicate with their neighbors, their family members, or their coworkers.

We want to see a grandmother be able to pick up the telephone and call her grandchild and actually hear their voice. We do not want to see a middle-aged man stop working because he cannot take orders from customers. We want a mother who has hearing loss to be able to have a conversation with her child’s teacher and be a part of their education. For us, this is not about policy, it is about people.

Recently, we have seen some progress towards this goal in a proposed rule change to allow coverage of hearing aids for dependents of the uniformed services. Most hearing loss is not amenable to surgical or medical treatment and therefore getting hearing aids is the first key step a person can take to treat their hearing loss. We applaud these proposed TRICARE changes and the potential help they will offer to dependents of our men and women in uniform.

In conclusion, Self Help for Hard of Hearing People is proud to be a part of the ITEM Coalition. I believe this Coalition will be an effective voice in raising awareness and advocating for access and coverage of assistive devices, technologies and related services for people with chronic conditions of all ages, including children and older Americans. Medicare, Medicaid and other public and private plans must enhance their coverage policies to provide those assistive devices, technologies and related services that Americans need to be healthy, functional and independent. For more information, visit: >www.itemcoalition.org