Advocating for Your Family
Families like yours work hard for their kids—and we’re here to support you. Our commitment begins with providing expert care, offering the most effective treatments and pushing the boundaries of research innovation. But it’s more than that. We want to be a resource for you and your child. Part of that effort means advocating for Gillette and our families like you.
From government programs to proposed legislation and regulations, many issues at the local, state and federal level have the potential to impact your child and family. Advocating for our patients is important to us. Often this means working closely with policymakers and Gillette families to engage in both policy discussions and active advocacy efforts.
Much of our patient advocate work at the state and federal level is focused on Medicaid, a program jointly funded by the federal government and the states. Nationwide, Medicaid is the single largest health care program for children. In 2019, nearly half of all Minnesota children were enrolled in Medical Assistance, Minnesota’s Medicaid program. In fact, the majority of the patients that we serve at Gillette are eligible for Medical Assistance.
Medical Assistance can help cover health care costs for people who have disabilities. It ensures that children and adults who have complex medical conditions can access and afford the care they need to stay healthy. Generally, people can qualify for Medical Assistance based on family income or based on their medical condition.
We are also involved in a wide range of policy issues.
At the state level we are currently supporting several policy initiatives including:
- Unrestricted access to services for the diagnosis and treatment of rare diseases requirement HF 626/SF 464
Minnesota House HF 626
Minnesota Senate SF 464
- Seizure training and seizure action plan required in schools HF 469/SF 654
Minnesota House HF 469
Minnesota Senate SF 654
- We are also working in support of telemedicine expansion with a focus on access and parity and to preserve the Spinal Cord Injury and Traumatic Brain Injury Research Grant Program.
We continue to work with elected officials at all levels of government to make sure that Gillette and our families have a voice when policy decisions are made.
If you want to become involved with our health care advocacy efforts, or share an issue that’s important to you, please email firstname.lastname@example.org.
We also offer the Gillette Ambassador Program, which gives current and former patients and their families the chance to support Gillette through attending community events, representing Gillette in the media and appearing in Gillette communications. Ambassadors will receive emails with opportunities to have fun, stay engaged and make a difference for Gillette!
Partnering with Our Community
Through the Affordable Care Act (ACA), all not-for-profit hospitals are federally required to conduct a community health needs assessment (CHNA) that identifies the health needs and priorities of the community it serves and the steps the hospital will take to address these issues. This report describes the community served by Gillette Children’s Specialty Healthcare (Gillette) and the process used to conduct the assessment, identifies the health needs prioritized by families served by Gillette, and summarizes resources currently available to address these needs. The report also highlights work completed by Gillette to address needs that emerged during its 2016 CHNA. Information from this assessment will be used by Gillette to develop an implementation plan to respond to the prioritized health needs of the community it serves.
In 2019, Gillette Children’s Specialty Healthcare (“Gillette”) contracted with Wilder Research (“Wilder”) to complete a community health needs assessment (CHNA) as part of policies under the Patient Protection and Affordable Care Act. What follows is an executive summary of our priorities for the next CHNA period 2020-2023. You can view the full Gillette Children's Specialty Healthcare 2019 Community Health Needs Assessment (PDF) and our implementation grid (PDF).
Despite the diversity of the children and adults cared for at Gillette, caregivers and community providers have expressed a desire for individualized support to meet the needs of their child, family or patient. Specific priorities and goals identified are:
Accessing Gillette medical care and treatment can be burdensome
- Difficulty scheduling appointments.
- Limited appointment availability.
- Inconsistent access to coordinated appointments.
A lack of robust, proactive care coordination
- Gillette staff might not have the time and resources to effectively communicate with other internal or external providers or teams, which can create greater coordination burden on families.
- The lack of a central employee who has a comprehensive understanding of a patient and how to meet their needs places excess burden on caregivers.
- Technology limitations hinder information sharing.
- Choices need to be clear to patients and families.
Inadequate connections to supportive community resources and education
- Families often rely heavily on home- and community-based services, yet struggle finding and obtaining them.
- Caregivers and stakeholders have difficulty obtaining and maintaining appropriate assistive and adaptive equipment and technology.
- Parents have limited opportunity to participate in recreational activities.
- Support specifically for caregivers and families is still lacking.
- Patient and family needs increase during a first diagnosis, during a significant change in a patient’s health status or when patients transition home after receiving care in a longer-term inpatient setting.
Lack of financial support and advocacy
- Managing finances is a daily stress.
- Accessing state or county benefits, as well as navigating insurance, has a significant effect on a family’s finances.
In 2016, Gillette Children’s Specialty Healthcare (“Gillette”) contracted with Wilder Research (“Wilder”) to complete a community health needs assessment (CHNA) as part of policies under the Patient Protection and Affordable Care Act. What follows is an executive summary of our priorities for the next CHNA period 2017-2020. Or, you can view the full Gillette Children's Specialty Healthcare Community Health Needs Assessment (PDF) and our implementation grid (PDF). Please contact TaraSwedberg@gillettechildrens.com if you have questions.
Despite the diversity of the children and adults that we care for at Gillette, caregivers and community providers have expressed a desire for individualized support to meet the needs of their child and family (or patient). Specific priorities and goals identified are:
- Improved and more systematic scheduling process that improves efficiency for families and caregivers when scheduling appointments.
- Improved phone system for scheduling, preferably with a live person answering, and ultimately, the ability to schedule online.
- More appointment times and simpler access to appointments (fewer hurdles).
Accessing community services
- Greater support in identifying and accessing community services not offered by Gillette but beneficial to their child.
Coordinating medical care and treatment
- Consistent support in navigating treatment decisions
- Continued emphasis on communication between Gillette providers and outside providers, with increased emphasis on sharing of relevant records between Gillette and external providers.
- Development of a centralized care coordinator role.
Themes related to specific population groups
Families in greater Minnesota
- Improved communication, training and support to providers outside of Gillette and particularly those in greater Minnesota to improve comfort levels and expertise in working with children with complex medical needs.
- Improved connections to transitional community services
Hispanic/Latino and Somali families
- Improved emphasis on the development of culturally-specific community services, both within and outside of Gillette.
Delivering world-class care requires us to regularly evaluate and understand our patients’ needs. To do so, we collaborate with families and providers to identify opportunities for improving and expanding our services and, ultimately, for providing better patient experiences for our patients and families—not only within our hospital, but also in the region we serve.
In compliance with the Patient Protection and Affordable Care Act of 2010, all tax-exempt hospitals are required to conduct a community health needs assessment every three years. In addition, each hospital must establish an implementation plan that uses its clinical expertise and resources to address the most pressing community needs identified in the assessment.
We are pleased to share our 2013 Community Health Needs Assessment. It summarizes our findings from interviews; focus groups and meetings with parents of children who have disabilities; community clinicians; and others familiar with the needs of children and adolescents in the region who have disabilities and complex medical needs.
We extend our thanks to the many parents and providers who shared their experiences and perspectives with us.
View the complete Community Health Needs Assessment.
2013 Community Health Needs Assessment Action Plan
Needs Related to Service Delivery
Access to pediatric sub-specialty expertise (beyond the metro) limits patient and provider options for high quality and interdisciplinary care. Needs include: orthopedics, neurology, PM and R and, neurosurgery.
Action: Gillette will increase and diversify access to subspecialty care in clinic settings beyond the 7-county metro area.
- Education and information gaps related to disability care persist.
- Expand education and outreach to providers and families
Timely identification and referral:
Action: Gillette will develop materials and resources to help clinicians understand the clinical guidelines for assessment, referral, and management of orthopedic, neurologic, musculoskeletal and craniofacial conditions.
Contemporary management concepts:
Action: Educational conferences and resources will be developed to help clinicians understand appropriate management concepts that lead to improved outcomes.
Needs Related to Technology and Improved Communication
Information exchange between patients, community clinicians and our physicians can be challenging.
Action: Gillette will explore methodologies for secure data exchange with providers and families to enhance communication, clinical coordination and reduction and redundancies in medical tests.
Better access to Gillette physicians will enhance care and encourage appropriate referrals.
Action: Communication mechanisms will be evaluated to enhance efficient and timely communication between community physicians and Gillette specialists
Needs Related to System Barriers
Out-of-network and out-of state insurance authorization is problematic and significantly limits patient access to quality care.
Action: Actively seek opportunities to collaborate with payers and providers to demonstrate capabilities and improve authorization process.
Needs Related to Case Management
Families face significant challenges in managing their child’s care.
Action: Gillette will define and develop a more consistent care coordination model.
Not Pursuing: Families are also seeing assistance in locating non-medical supports, such as transportation, support groups and home modifications. Since a number of organizations are providing this service in the community, Gillette will not engage in a concerted effort to meet this need.
Needs Related to Upstream Issues
A variety of broader issues impact accessibility of health care for the families we serve. Increase support and education of existing early intervention programs would lead to more timely and appropriate referrals.
Action: Gillette will provide resources to early intervention programs to help them determine how to better evaluate at-risk children and make appropriate recommendations for referral.
Identify opportunities to educate parents and community members about prevention and safety initiatives.
Action: Within our Level I Pediatric Trauma partnership with Regions, Gillette will work with Regions staff to engage in pediatric safety initiatives.
Seek opportunities to increase diversity in the workforce.
This initiative is already in progress within the Gillette’s existing Human Resources framework.