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Eliza Butler with her family at gillette

Gillette Children’s was founded because of the advocacy of Dr. Arthur Gillette and Jessie Haskins. And 125 years later, we continue to build on this legacy, as we know that decisions made by policymakers can have a real-life impact on our patients and their families. That is why our team works every day to make a meaningful difference in the lives of our patients. We do this through advocacy to influence public policy and through active community engagement. We work closely with organizations and policymakers on the local, state, national, and international level to advocate for patients with brain, bone, and movement disorders.

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Key Issues

  • Medicaid
    • Medicaid, known as Medical Assistance in Minnesota, is a government-sponsored health insurance program that provides care to low-income adults and children, pregnant women, and people with disabilities. The program is supported by both the state and federal government and covers a broad range of health care services. Because of the population we serve, many of our patients are either eligible for or covered by Medicaid. In 2021, about 74 percent of Gillette’s inpatient stays were either eligible for or covered by Medicaid. Because of this, we work to assure that Medicaid is accessible, and covers services our patients need.
  • Rare Disease
    • According to the National Institutes of Health, about 1 in 10 Americans are affected by a rare disease. In 2021, Gillette treated over 10,000 patients living with a rare disease. Gillette is known worldwide for its expertise in caring for children diagnosed with rare diseases such as Rett syndrome, spinal muscular atrophy (SMA), acute flaccid myelitis (AFM), Legg-Calve Perthes disease, Prader-Willi syndrome and other conditions. It is important that policies are reflective of the needs of people living with rare diseases and their families.
  • Health Equity
    • Gillette Children’s is invested in improving health equity, not just among our patient population, but across Minnesota and beyond. Our equity work is embedded in every department in our organization, but within the advocacy department, we push for policy solutions that address the social determinants of health and improve health equity. We are engaged with several organizations that work on these issues.
  • Patient and Provider Choice
    • We believe that medically complex conditions are best served when patient and provider choice are preserved. This assures the proper care takes place. Our providers are experts in complex, rare, and traumatic conditions and we believe their expertise and recommendations should not be limited when providing care for our patients. Parents are also experts in their child’s care, and typically know the specialists and subspecialists across the country who are best able to serve their child’s needs. We believe that patient choice also should be protected.

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.

Executive Summary

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.

Executive Summary

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:

Scheduling

  • 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.

Adult patients

  • 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.