A Letter from The Arc of Nebraska's Executive Board, submitted during the DHHS commenting period.

 

 

The Arc of Nebraska Board of Directors 

Executive Committee 

215 Centennial Mall South

Suite #508  

Lincoln, NE, 68508

Date: 12/30/2025

Dear Public Officials & DHHS Directors,

The Arc of Nebraska: Advocacy and Background

The Arc of Nebraska is a statewide nonprofit disability membership organization in Nebraska. The organization is dedicated to advocating for individuals and families with intellectual and developmental disabilities, striving for respect, dignity, and inclusion within Nebraska communities.

For 70 years, The Arc of Nebraska has been a champion for the rights and full participation of children and adults with intellectual and developmental disabilities. With a network of 13,561 supporters and eight affiliated chapters, the organization works to improve support systems, connect families, inspire communities, and influence public policy.

Request for Extension of Public Comment Period

Pursuant to 42 C.F.R. §441.304(f), The Arc of Nebraska is submitting public comments regarding the Nebraska Department of Health and Human Services (DHHS) plan to renew the 1915(c) Medicaid Home and Community Based Services (HCBS) Aged and Adult and Children with Disabilities (NE.0187) waiver and amend the Traumatic Brain Injury Waiver (NE.40199).

Before offering feedback on the proposed changes, The Arc requests an extension of the 30-day public comment period, which began on 12/05/2025 and ends on 01/05/2026. Given that the project has been developed over six months,  and it does not appear the Olmstead Committee or any organizations involved with these services were notified or consulted about the proposed significant changes. The organization believes that allowing only 30 days for public comment—especially during the holiday season—is insufficient.

Historical Context & Concerns About Care

There is interest in returning Nebraska to a time when the government was not involved in the care of persons with disabilities. However, Nebraska has recognized its responsibility to support individuals with disabilities for more than a century, beginning in 1887 with the Institute for Feeble Minded Youth (the current Beatrice State Development Center) and later with the Nebraska Orthopedic Hospital for destitute crippled and deformed individuals, opened in 1905.  The state has long-favored government support as a more humane approach than leaving care solely to families.

Moving individuals to large institutionalization, outside of community-based supports and family homes, would be a step backward. Nebraska has continued to evolve toward inclusive living opportunities for the safety and well-being of those who rely on individualized care. Including Nebraskans with disabilities within our communities creates stronger relationships and increases a sense of fulfillment.

 

Significant Changes Impacting Health and Safety

The Arc of Nebraska wishes to address several significant changes in the waiver that could affect the health and safety of its constituents.

 

Combined Costs and Service Reductions

The waiver application states that when the combined costs of waiver and state plan services exceed the cost limit, the Services Coordinator (SC) will work with participants to reduce services below the 175% limit, while still aiming to ensure health and safety.

There is uncertainty about what costs are being "combined." The lack of clarity leads to confusion and inconsistent interpretation.

Many individuals rely on Medicaid services not covered by the renewed HCBS or TBI waivers for their health and safety. A 40-hour cap on services will limit support for those with complex needs, such as individuals requiring 24-hour care for hospital-level needs, while few facilities exist to provide such care.

  • Communication about these changes has been inadequate. Those impacted have reported that facilities either were not aware of the waiver changes or maintained waitlists, resulting in families unable to find alternate care facilities if forced to move care for their loved ones with complex medical needs from current home-based care.
  • History has shown that relying on families to provide specialized care is problematic, as many lack the necessary training and capacity.
  • From a health and safety standpoint, The Arc of Nebraska requests more information regarding facility locations, associated costs, and the reasoning behind the proposed 40-hour cap. 
  • The 40-hour cap will likely make it impossible for these families to continue to care for their loved ones at home and the cost of facility care will clearly exceed the cap established by the department based on the $92,438 that covers routine residential nursing home care. It is also not clear if the State has capacity to provide this advanced level of care for the number of individuals that will be impacted by the proposed change.

Cost Limits for Nursing Facility Level of Care Waivers

The waiver application states that when the combined costs of waiver and state plan services exceed the established cost limit, the Service Coordinator (SC) will work with participants to reduce services while still aiming to ensure health and safety.

A proposed cost limit of $92,438 is based on average per capita spending for nursing facilities.

  • There is concern about the sample size and inclusion criteria for the average calculation (reported as 500 individuals). If individuals with significant disabilities were included, the average would likely be much higher. Currently, Nebraska does not institutionalize these individuals.
  • Most individuals with nursing facility care needs are not in facilities, so the average cost reflects custodial or minor medical care mostly for the geriatric population, not the skilled nursing care required for individuals with significant disabilities. 
  • As a result, the cost base established by the State does not take into account the higher costs of institutional care in a hospital or skilled nursing facility for individuals with complex medical needs receiving appropriate at-home medical care. 

 

Referrals to Community Services

The renewed waiver states that when health and safety cannot be met within the cost limit, the Services Coordinator will refer participants to other community services. The Arc recommends the creation of a listing or resource map of available community services throughout the state. Members report "support deserts" due to nursing facility closures, lack of critical care facilities, and shortages of direct support professionals (DSPs) and home health care workers, all of which are pressing health and safety concerns.

The HCBS Setting Rule aligns with the Olmstead ruling, requiring states to support competitive employment and community living for people with disabilities. Nebraska's Olmstead Plan aims for all individuals to live, learn, work, and enjoy life in integrated settings. Institutionalization is not considered the most integrated setting and constitutes a violation of Olmstead, if other appropriate levels of care are available.

  • On 07/01/2026, Nebraska will implement the HCBS Grievance process, requiring a procedure for beneficiaries to file grievances related to person-centered planning and service plan requirements. * 
  • Due to health and safety concerns, The Arc is concerned that the relationship of the Grievance Process listed in the Final Settings Rule and the Due Process Appeal Procedure will be confusing to parents.
  • Questions as to eligibility, evaluation of the required level of care, hours and funding are solely addressed under the Due Process Appeal procedure and the information about the new Grievance Procedure does not make that relationship clear.
  • The current grievance process is inadequate given the significant changes proposed. Questions remain about how grievances against Services Coordinators or situations where providers refuse service are handled.

Recommendations for the Grievance Process

The grievance process should involve an impartial, neutral reviewer. While Liberty Health provides quality reviews, the human rights committee operates in-house. It is unclear whether families can contact Liberty Health directly. More clarification is needed regarding the distinctions between appeals, fair hearings, and due process (eligibility and entitlement issues). Beneficiaries must be made aware of their rights, which should be communicated in plain language and with reasonable assistance for completing forms. Nebraska must ensure that no punitive action is taken against individuals filing grievances, and anonymous complaints should be possible. DHHS is asked to share detailed information about existing safeguards and protections. Beneficiaries need assurance that the grievance process meets due process standards and is clearly explained. If these processes are not established before the A&D Waiver changes take effect on 07/01/2026, the public comment period should be reopened.

Conclusion

The Arc of Nebraska hopes these comments prompt further detailed examination of the proposed renewal of the 1915(c) Medicaid Home and Community Based Services (HCBS) Aged Adult and Children with Disabilities (NE.0187) waiver and the amendment of the Traumatic Brain Injury Waiver (NE.40199).




Mary Phillips

Board President

 

Amy Bonn

Board President Elect

 

Julie Stahla

Board Past-President

 

Angela Gleason

Board Secretary

 

Adam Musfeldt

Board Treasurer

 

Phil Gray

Second Vice President