American Cochlear Implant Alliance Advocacy
ACI Alliance State Grassroots Committees
The State Champion network was established in 2013 as one of the first programs implemented by the ACI Alliance as a means of harnessing the knowledge and energy of our members throughout the US, and apply this knowledge and energy to advocacy efforts. State Champions represent the full continuum of cochlear implant care such as ENTs, audiologists, speech pathologists, educators, and psychologists. State Champions are also parents of children with cochlear implants, adult CI recipients, family members, or other users of hearing technology. The ACI Alliance looks to the State Champs to lead on policy issues at both the federal and state level.
State Champions participate in periodic briefing conference calls. Champs may also request one-on-one calls on specific topics in their state. We convene an in-person State Champion meetings at the annual US CI conference and arrange Capitol Hill visits. Additionally, Champs are encouraged to invite legislators to their clinics or schools. We encourage our Champions to reach out to their representatives at both the federal and state levels when spearheading a key issue that could impact CI and hearing technology access.
State Champions work on specific issues identified by the ACI Alliance. Current issues include, but are not limited to:
• Ensuring parent choice on services for their deaf and hard of hearing children. We do not push for one communication modality over another; rather we emphasize support of parents and patients through knowledge and family decision making
• Improving early intervention services for all deaf and hard of hearing children
• Addressing Medicaid access challenges such as appropriate rehabilitation for children or equipment replacement
• Continuing to ensure the key provision of essential health benefits (EHB) and retention of pre-existing condition provisions as contained within the Affordable Healthcare Act
• Access to cochlear implants for veterans
• Improving information about cochlear implantation for people of all ages through early intervention, general hearing healthcare, and primary care settings.
State Champions also help guide our State Grassroots Committees and utilize their joint voices to grow our advocacy efforts. If you are interested in becoming a State Champion or in serving on a State Grassroots Committee, please contact Donna Sorkin at firstname.lastname@example.org or Nichole Westin at email@example.com.
The Future of Member Advocacy - State Grassroots Committees
With more policy decisions and funding being pushed to the states, it is critical that the ACI Alliance nurture a robust grassroots networks led by our State Champions and supported by ACI Alliance staff. The State Grassroots Committees are an opportunity for anyone to engage in advocacy and awareness of access to hearing technology, whether consumer, parent, family members, or clinician.
The State Grassroots Committees are an opportunity for members interested in volunteering to assist with advancing the cause of cochlear implants and other hearing technologies and oral speech at the federal and state level. The Committees are an excellent opportunity for patients and their families to be involved as the ACI Alliance strongly advocates for parent choice on communication options and the importance of parents having full information about communication and technology options, including hearing aids, cochlear implants, bone anchored auditory implants, and other technologies that provide access to sound to facilitate language development.
The Grassroots Committees act as supporters of our State Champion activities by participating in meetings at the state level, sending letters on key issues, and general information gathering and dissemination. The ACI Alliance will support the committees by providing advocacy training, access to advocacy toolkits, and information on CI access. The key issues the State Committees will support the State Champions on are:
• Ensuring parents have access to the full array of choice including the option to hear. We do not push for one communication modality over another; rather we emphasize support of parents and patients through knowledge and family decision-making.
• Improving early intervention programs for all deaf and hard of hearing children.
• Addressing Medicaid access challenges such as appropriate rehabilitation and equipment replacement
• Responding to private insurance coverage concerns relative to cochlear implants
If you are interested in being a part of our grassroots network, please contact Nichole Westin at firstname.lastname@example.org.
The State Champion network was established in 2013 as one of the first programs implemented by the newly organized ACI Alliance as a means of harnessing the knowledge and energy of our members throughout the US, and apply this knowledge and energy to advocacy efforts. State Champions are employed at cochlear implant centers, hospitals, non-profit organizations, schools or independent clinical offices. They represent the full continuum of cochlear implant care as ENTs, audiologists, speech pathologists, educators, and psychologists. Several State Champions are parents of children with cochlear implants or adult CI recipients. We currently have 85 State Champions representing 40 states. Some states have as many as four Champs while others do not yet have one. There is a need to build out the network with multiple Champs in larger states and at least one Champ in each of the 50 states and Washington, DC.
State Champions participate in teleconference briefing calls (approximately 4 per year). Champs may also request one-on-one calls on specific topics in their state. We convene in-person State Champion meetings at the annual US CI conference and have done so since 2013. Capitol Hill visits were arranged on the day preceding CI conferences held in Washington DC in 2013 and 2015. These Hill visits will be repeated in March 2018 at the CI conference being held then. Additionally, Champs were encouraged to invite legislators to their clinics or schools for an initiative called ACI Alliance on the Hill—At Home in the Summer/Fall of 2016. Thus far, our State Champion activities have focused on:
- Cochlear implant awareness and understanding of benefit among national elected and appointed officials
- Pressing for appropriate CI coverage in the Affordable Care Act Marketplace Plans at the state level
- Identification of coverage challenges such as appropriate rehabilitation for children or equipment replacement
- Urging for reauthorization of the national Early Hearing Detection and Intervention (EHDI) Act
State Champions have encouraged ACI Alliance to take on additional issues going forward including ensuring appropriate Medicaid coverage in the years ahead. ACI Alliance strongly advocates for parent choice on communication options and the importance of parents having full information about communication and technology options, including cochlear implants. We do not push for one communication modality over another; rather we emphasize support of parents through knowledge and family decision-making.
The Future of Member Advocacy
Federal policy is expected to shift dramatically in the years ahead with greater decision-making on Medicaid and other programs being pushed out to states. Healthcare officials at HHS and CMS have discussed a move towards Medicaid block grants to states, allowing states more leeway on Medicaid coverage, reductions in Federal funding for Medicaid, and greater reliance on healthcare savings accounts for low and moderate-income people. If this transpires, this will likely mean a reduction in Federal funds for Medicaid forcing states to prioritize healthcare. The cost effectiveness and quality of life benefits of cochlear implantation will necessarily become a key aspect of our advocacy and awareness efforts.
This expected change in federal-state decision-making makes the State Champion network more important than ever. To allow a build out of the program, we will undertake the following actions:
- Formalize our efforts and create ACI Alliance State Committees for each state.
- Create a new full-time staff position under the direction of the Executive Director to work with our member advocates—State Advocacy Coordinator
- Double the number of State Champions and achieve State Champion coverage in every state with multiple Champs in many states
- Through our new ACI Alliance State Committee, aggressively seek additional volunteer participation—especially parents of children with cochlear implants, adult CI recipients, and others in families to serve as members of the ACI Alliance State Committees
- Increase the number of teleconference calls and one-on-one support for our advocacy volunteers
- Develop more guidance materials for State Champs and Committee Members to use
- Increase the number of consumer/parent members of ACI Alliance to allow a significant expansion of the advocacy pool and as a means to take advantage of the energy and excitement of CI beneficiaries
- Tapping into the energy of our expanded consumer membership, create a new parent/consumer role in member advocacy via State Committees, led by State Champions and supported by our national office staff. Committee Members will have their own teleconference briefings and will be invited to meetings organized by our State Champions. They will be asked to write letters, make phone calls, and create awareness via social media.
A printable version of this document is available HERE.