ACI Alliance State Champion Program
To proactively address coverage of cochlear implantation at the state and national levels, ACI Alliance established a State Champion Program. State Champions in each state are undertaking the following activities:
- Make/maintain contact with appropriate state officials.
- Participate in Federal level advocacy as part of ACI Alliance activities.
- Continue to monitor your state's Essential Health Benefits in its Marketplace Health Plans for "Gold Standard Language" for cochlear implants.
Gold Standard Language: Outpatient and inpatient (as deemed appropriate) surgery and device inclusive of bilateral cochlear implants; early intervention; needed follow-up clinical services including audiology, (re)habilitation, and DME.
- Serve as a point of contact for ACI Alliance and other members who wish to advocate.
- Monitor how state and federal activities roll out in each state to proactively protect coverage of cochlear implantation and access to care for children and adults.
- Report back to ACI Alliance so that we can impact on Federal policies and collectively work on state policies.
At present, we have 40 states with one or more State Champions. Initially our State Champions led activities related to the Affordable Care Act. We have expanded our interest and impact to include early intervention, services and support for children and adults, Medicaid, private insurance coverage and access to CI care for veterans.
For a listing of our State Champions click HERE. If you are interested in serving, please contact Donna Sorkin at firstname.lastname@example.org
One of the core principals of American Cochlear Implant Alliance is advocacy. State Champions and our new State Grassroots Committees are working to make the voices of our membership heard by federal and state legislators, policy-makers, and regulators. We utilize a variety of mechanisms to accomplish our goals including in-person meetings, letters, formally submitted comments, and working with collaborative partners. As we prepare for 2019, I would like to share details from our work of the past few months which set the stage for our efforts in the future for promoting 21st century hearing technology.
Medicaid and Cochlear Implants
In our August issue, we discussed our efforts to encourage Maryland Medicaid to provide coverage for qualifying adults needing a CI. Since then, the Maryland Medicaid office replied to our submitted comments and agreed to accept the vast majority of our proposed changes including coverage of both bilateral and unilateral surgeries and improved coverage of replacements for rechargeable batteries. While we disagree with their decision to not specify the processor upgrade policy for Maryland Medicaid, overall we were pleased with the positive changes in adult coverage in Maryland as well as the improvements for children and adults in related services. Our experience in Maryland can be replicated in other states as reviews are underway. You can read our comments here.
Our Medicaid advocacy efforts continued when Chair Colin Driscoll flew to Washington, DC to join ACI Alliance staff for a meeting at CMS followed by four meetings with key Committee staff of both parties in both the US House and US Senate. Discussion centered on five key points: (1) low reimbursement, (2) restrictive equipment upgrade policies, (3) complexity added by usage of MCOs, (4) caps and complicated waiver processes for therapy and (5) difficulty obtaining authorization for surgery and related services. These topics were pulled from our recent member survey on Medicaid which is pending publication in early January 2018.
One of the issues that struck a nerve with both CMS and Hill staffers were therapy caps and complicated waiver processes for pediatric speech therapy. Since the meetings, we have reached back out to CI clinicians to discuss their experiences and have supplemented that information with extensive research on published state policies. If you have struggled with this issue in your state, please contact me as your story will help us make changes.
Working with Legislative Sponsors
Every year, thousands of bills are introduced into the US Congress and state legislative bodies, but only a fraction of them become law. The ACI Alliance keeps an eye out for any bill that impacts on access to care or services for children or adults who are deaf or hard of hearing. In December, we submitted comments to the Washington, DC City Council in support of a bill that would require movie theaters to provide open captioning during peak times at least four times a week.
Along with other organizations in the field of hearing loss, we recently met with key sponsors of HR 1120, ‘‘Alice Cogswell and Anne Sullivan Macy Act.’’ We support most of the components of the proposed legislation and its objective of supporting needs of children in educational settings. We are concerned about one element of the proposed bill that would discourage states from addressing changes in educational needs; if a state school for the deaf and/or blind were closed because of declining enrollments and/or different priorities for students, that state would lose Federal funding associated with the school’s funding and could not reprogram the funds to meet current educational needs and desires of families. We met with the sponsors to discuss our concerns and show our support for educational programming that reflects the needs and desires of today’s students.
While we often use our collective voice to support good policies, we have been encouraged by our State Champions to oppose a movement that would implement processes that could hamper provision of appropriate services for young children who are deaf and hard of hearing. Over the past few years, the group Language Equality & Acquisition for Deaf Kids (LEAD-K) has pushed for states to pass legislation that we and other organizations believe will hamper family choice by promoting ASL for all children—regardless of the family’s perspective and the language development program that they are pursuing for their child.
Since 2016, seven states have enacted such laws while over a dozen efforts have been stopped or delayed. Our State Champions urged us to proactively address these initiatives by providing tools and guidance. Given that we expect the 2019 state legislative sessions to see multiple LEAD-K bills introduced, we have developed a number of tools that will be helpful. Our State Champions will lead state level efforts against LEAD-K laws; they welcome involvement by others—professionals in hearing health care as well as parents. Check the listing of State Champions in your state. Advocacy is more important than ever and we hope you will join us in making our voices heard.
ACI Alliance on the Hill
The day before CI2018 DC, 65 ACI Alliance State Champions and member advocates converged on Capitol Hill in pre-arranged groups to discuss cochlear implant benefit and access. These meetings are important as they allow our members to educate Members of Congress and staff on what a cochlear implant is, the impact the technology has on recipients, as well as the necessity of on-going therapy once a surgery is complete. This year, the meetings with Members of Congress and staff also addressed the important access provided by Medicaid (especially for children) and current Essential Health Benefits language. ACI Alliance advocates also emphasized the need for improved CI access for Veterans via the VA hospital system.
Our volunteer advocates shared how Medicaid is a major payer for cochlear implants and related therapy services, especially for children and that any major changes, whether legislative or regulatory, to Medicaid, could have a direct impact on access to CI coverage. This was also an excellent chance to educate on Essential Health Benefits (EHB), which codifies what all health plans must cover under current law. Cochlear implants and related services are considered EHBs under the category of “rehabilitation and habilitation services and devices” and any changes to EHB could result in fewer private health plans covering CI.
We found a receptive audience, especially on the VA access issue. Since our meetings, Congressman David McKinley (R-WV) sent a letter requesting that the VA review its CI referral process. We have since heard from other Congressional offices that they are interested in sending similar letters. To be clear, we think the VA does an excellent job of providing hearing aids and CI services when a veteran is referred, but we are concerned that the VA is not referring many potential CI candidates.
ACI Alliance will continue to engage with Congressional Members to promote knowledge and understanding of how CI can change lives.
ACI Alliance State Champs and Member Advocates head for Capital Hill meetings before CI2018 DC
State Champions Meet in Toronto
State Champions met during the 14th International Conference in May 2016 to discuss the Alliance’s new advocacy initiative for the summer: ACI Alliance on the Hill—At Home. Given this year’s especially long Congressional recess from mid July to early September, we have a unique opportunity to reach out to elected officials while they are in their homes districts or states this summer. We discussed plans to encourage ACI Alliance members to invite Members of Congress to visit clinics or schools while they are at home for the long summer recess (July 16–September 6). The purpose identified was two-fold:
- To share information about cochlear implantation (CI) and the local CI provider presence and
- To ask Senators to support the Early Hearing Detection and Intervention (EHDI) Act of 2015, S. 2424. The bill has already passed the House.
As of mid August 2016, two State Champions had jump-started the summer program with Congressional visits to their clinics.
Led by State Champion Casey Stach AuD, the University of Michigan Cochlear Implant Program hosted US Senator Debbie Stabenow’s staff. University of Michigan staff discussed the benefits of early intervention (EI) and shared details on hearing aids and cochlear implants and what they provide for a child with hearing loss. They urged that the Senator sign on as a co-sponsor of the EHDI bill.
State Champion Casey Stach also arranged for the Senate staffer to meet families including two siblings, ages 9 and 4. She chatted with the family and learned how early intervention and CI technology changed their lives. Another conversation was with a mother and her 4-year-old son who began his CI journey with an evaluation at 7 weeks of age, then was implanted at 12 months with his first device and at 15 months with his second. Both families were important communicators regarding the importance of early intervention with a cochlear implant.
Connecticut State Champion, Marion Radeen MS, worked with others at CREC Soundbridge to host a visit by US Senator Richard Blumenthal on July 21. CREC Soundbridge provides audiological and educational services to children throughout Connecticut. Families were invited to attend and share their experiences with the Senator including the value of early identification and follow-up services such as those provided by CREC. The Senator had previously signed on as a co-sponsor of the EHDI Bill after contact by our State Champions in Connecticut.
Making connections with Congressional offices and developing relationships with Members of Congress who may champion CI intervention in the future is essential. The best way to develop Congressional champions is to have them visit clinics, universities, schools to see—firsthand how clinicians and educators work with CI recipients and the extraordinary outcomes people achieve with the intervention. Materials provided to advocates are available at http://www. acialliance.org/page/Summer2016
Focusing on Member Advocacy to Bring About Positive Change during CI2015
ACI Alliance advocates arrived early at the October 2015 CI conference so that they could participate in ACI Alliance on the Hill Capitol Hill visits. The day’s activities served as an opportunity for 75 cochlear implant (CI) clinicians, scientists, educators, parents and consumers to educate over 100 Congressional offices on the importance and implications of cochlear implantation. Susan: first you said nearly 90 and then you gave the actual number (75). I took out the almost 90 but you can go with almost 90 or you go with 75 but not both.
Participants were organized into 25 groups, so that individuals from the same state would attend meetings together. Materials and key messages, including meeting talking points, were developed for participants and shared during a training session for advocates prior to traveling to Capitol Hill.
Advocates led meetings with Congressional staff members regarding several topic areas pertinent to cochlear implantation. In the Senate meetings, advocates focused on requesting support for the introduction of the Early Hearing Detection and Intervention (EHDI) Act 2015, H.R. 1344 which had not yet been introduced into the Senate at the time. EHDI would amend the Public Health Service Act to reauthorize research and public health activities related to early detection, diagnosis, and treatment of hearing loss in newborns and infants. ACI Alliance strongly supports new provisions in this legislation that would ensure parents of children with hearing loss are presented with the full range of treatment options—including cochlear implantation—and that the reauthorization is extended to young children, in addition to newborns and infants.
The House of Representatives passed the EHDI Reauthorization Act in September 2015; hence meetings there were intended to thank offices for their support and focus on educating Hill staff about CI intervention, the continuum of care, and appropriate coverage of therapy after surgery.
As a result of our meetings and contact by other groups, Senators Portman and Gillibrand introduced S. 2424, the Senate version of the EHDI law, in December 2015 just prior to the holiday recess. We are very proud of the work of all of our advocates in moving the bill forward.
State Champions Meet in Nashville
ACI Alliance State Champions met in Nashville to discuss our work, which thus far has largely related to assessing coverage of cochlear implantation under Affordable Care Act Marketplace plans. We also discussed branching out to other topics. Our findings indicate that while Marketplace Plans do cover CI, we have thus far seen few patients come through who are accessing their insurance coverage through the Marketplace Plans. The concerns that we have relate to limitations on the number of therapy sessions available under such plans, which are typically limited to 30 sessions per year—regardless of the age of the patient. Such limits, which are often referred to as “therapy caps,” are increasingly common in private insurance plans as well.
To share our concerns on this topic, ACI Alliance provided written comments to the US Department of Health and Human Services and to the US Office of Personnel Management. Several of our State Champions submitted comments as CI clinicians. We emphasized the critical need for appropriate follow-up care post CI surgery. You
may view our comments on the ACI Alliance website.
Our lively discussion in Nashville also addressed our focus going forward. We explored two topics that impede access to care: (1) Low Medicaid payment rates for cochlear implant surgery and follow-up services and (2) The need for language in the Reauthorization of the Early Hearing Detection and Intervention Act of 2015 to address the lack of information provided to families on technology and communications options for a young child with hearing loss.
With regard to the issue of low Medicaid payment, we will develop materials that can be utilized by State Champions who wish to lead initiatives in their own states to address Medicaid payment and coverage concerns. Our Washington, DC State Champions have already initiated such a process involving clinicians, educators, and families.
With regard to the issue of parent information, CI clinicians continue to see children arrive at their clinics who were identified deaf at birth but enter the CI process late because families were not given information regarding cochlear implants as part of early intervention advisement. US pediatric CI utilization rates are half of comparable rates
in Western Europe, largely because families do not receive the information they need to make informed and timely choices for their children. ACI Alliance has joined with other organizations in the hearing health field to address this concern.
Our advocacy efforts have been greatly advanced by these dedicated individuals working at the State level. Most of our meetings are held in the evening via teleconference. We will hold an in-person meeting at the upcoming CI2015 DC Symposium.
ACI Alliance State Champions met at CI2014 in Nashville to plan future initiatives.