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Medicaid HCBS DD waivers
Developmental Disabilities
No

What would you like to do?

What would you like to do?

What you need to know

What would you like to do?

What you need to know

What you need to know

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​​​​​​​​​​​​​​​​​​​​​​In March 2024, Governor Jim Pillen joined the Division of Developmental Disabilities (DDD) to announce a plan to eliminate the wait for developmental disabilities services to better support Nebraskans with intellectual and developmental disabilities (IDD).

Read the DHHS News Release here.
 This is a breakthrough way to reimagine how services are offered to individuals with IDD in Nebraska and save taxpayer dollars. This is the first time in Nebraska history the DD Registry will be eliminated, which is a huge step forward to ensure all Nebraskans have the opportunity and support to live the Good Life. ​
Governor Pillen​, March 2024​​​​


Nebraska's Strategy to Improve Access to DD Services

On November 6, 2024, DDD released a blueprint to how the division is creating a needs-based, participant-driven model of service delivery to eliminate the waitlist.


Policy Open Houses - Waitlist Elimination

In December, the DDD Policy team is holding virtual open houses on Zoom. Come learn about upcoming policy changes related to the DD Waitlist Elimination. You're invited to listen and ask questions.

Sessions are scheduled for 90 minutes. The same information will be shared each time: 

  • Tuesday, December 10 at 5:30 PM, Central
  • Friday, December 13 at 11:30 AM, Central
  • Monday, December 16 at 4:00 PM, Central
  • Friday, December 20 at 11:30 AM, Central

For login information, see the calendar at the bottom of the DDD homepage​.

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View Empowering Your Growth PDF


Waitlist History

April 2024 - Where we Started

As of April 1, 2024, there are 2,712 people on the Waitlist. 

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1,204 people on the list currently receive a service.
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About 2/3 of those on the list are male.
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1,869 of those on the list are 21 years old or younger.

Before April 2024

The Waitlist was previously known as the Registry of Unmet Needs. In November 2008, there were 3,465 people on this list. At that time, people selected a "date of need" to indicate when they wanted to receive developmental disabilities services. People could move their "date of need" or refuse a waiver offer and remain on the list. 

In 2017, the Registry changed to a "true" waiting list, and when someone refused a waiver offer, they were removed from the list. If they decided they wanted services in the future, they needed to submit a new application. In order to be on this list, a person had to be eligible for Nebraska Medicaid or be a minor.  

As of 2017, the list is again known as the "Registry." Many people on the list are not "waiting" but are getting some type of state-funded service. As of March 1, 2024, there were 2,704 eligible Nebraskans waiting for developmental disabilities services.

Projected Offers​

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View Accessible PDF of Offer Projections.

Elimination Timeline​

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View Timeline PDF

​​Timeline Progression

​Expand the phase sections below to view ongoing updates.

Phase 1: March 2024 - August 2024

Ongoing Tasks

  • Internal DHHS cross-divisional discussions.​
  • External stakeholder engagement activities.
  • Update website as needed.

March 2024 - Completed Tasks
  • 3/1/24: Family Support Waiver approved by the Centers for Medicare & Medicaid Services (CMS).
  • Completed first round of Family Support Waiver offers. 
  • 3/29/24: Announced the Waitlist Elimination.  Read the DHHS News Release here.

April 2024 - Completed Tasks​

  • 4/1/24: Held monthly HCBS stakeholder call.
  • 4/10/24: Provided information to the DD Advisory Committee.
  • Director Green held external "Let's Talk" Townhall stakeholder meetings: 
    • ​4/22 in Gering
    • 4/23 in Kearney
    • 4/24 in Omaha
  • Completed second round of Family Support Waiver offers. 
  • Developed webpage to share information.

May 2024 - Completed Tasks

  • 5/3/24: Webpage went live.
  • 5/6/24: Held monthly HCBS stakeholder call.
  • Director Green held external "Let's Talk" Townhall stakeholder meetings: 
    • 5/8 in Lincoln
    • 5/9 in Norfolk
    • 5/24 online
  • Completed third round of Family Support Waiver offers. 
  • 5/21/24: Published Frequently Asked Questions.
  • 5/22/24: DHHS Medicaid and Long-Term Care (MLTC) posted a notice to implement a new eligibility group within the Katie Beckett Program for ICF/IID level of care. Proposed implementation date 7/1/24.
  • Used funding from American Rescue Plan Act (ARPA) to begin already-planned interRAI contract work.

June 2024 - Completed Tasks

  • 6/3/24: Held monthly HCBS stakeholder call.
  • Launched interRAI contract work with Myers & Stauffer. These tools will be for used for: ICF/IID level of care, budgeting for DD waivers, and as an individual needs assessment. 
  • 6/17/24: Provided information to the DD Advisory Committee.
  • 6/24 and 6/26: Stakeholder presentations on the interRAI assessment.
  • Completed fourth round of Family Support Waiver offers. 

July 2024 - Completed Tasks

  • DHHS Medicaid and Long-Term Care (MLTC) posted a notice to implement a new eligibility group within the Katie Beckett Program for nursing facility​ (NF) level of care. Proposed implementation date 7/2/24.​
  • 7/1/24: Held monthly HCBS stakeholder call.
  • 7/1/24: Katie Beckett Program expanded to include level of care for Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IID).
  • 7/2/24: Provider presentation on the interRAI assessment.
  • 7/2/24: Katie Beckett Program expanded to include level of care for Nursing Facilities​ (NF).
  • 7/3/24: Stakeholder interRAI assessment presentation posted to webpage.
  • Completed fifth round of Family Support Waiver offers.
  • Began Family Support Waiver (FSW) technical assistance sessions for families.
  • Continued work on drafting waiver amendment language. 

August 2024 - Completed Tasks

  • 8/5/24: Held monthly HCBS stakeholder call.
  • Completed Family Support Waiver (FSW) technical assistance sessions for families.
  • Regulatory and Statutory needs – shared with stakeholders for feedback.
  • Submission of State Plan Amendment (SPA): Katie Beckett (Medicaid).
  • 8/19/24: Published Katie Beckett FAQs. 
  • Last round of the initial 850 Family Support Waiver offers. 

Phase 2: September 2024 Onward

Ongoing Task

  • ​Continue external stakeholder engagement.​

September – December 2024

  • September - interRAI pilot project begins to conduct concurrent assessments between Sept. 2024 and January 2025. 
  • ​Identify and address appropriate support/waiver options for adults on the waitlist.

January – May 2025

  • January through June Legislative Session.
  • January - Tribal and Public Comment for Waiver Amendments
  • February - Submit any Waiver Amendments to the Centers for Medicare & Medicaid Services (CMS).
  • March/April - Make Day Service/Graduate annual offers.
  • Continue to Identify and address appropriate support/waiver options for adults on the waitlist.

June – September 2025

  • June – Projected Approval of Waiver Amendment to the Centers for Medicare & Medicaid Services (CMS).
  • July – Implementation of any Legislative changes.
  • Continue to Identify and address appropriate support/waiver options for adults on the waitlist.

October 2025

  • End of the Waitlist.

Cost Estimates

cost estimate for eliminating waitlist
View Accessible Cost Estimate PDF

Assumptions

  • For Medicaid costs, DDD used the Region 1 and Region 2 Aid to the Aged Blind and Disabled (AABD) 00-20 (male and female) and AABD 21+ (male and female) per member per month (PMPM) estimates calculated by Nebraska's contracted actuary. The number new to Medicaid is estimated at 446 children not currently eligible, all others on the Waitlist have Medicaid.
  • Waiver costs were estimated by:
    • Estimating that some of the active DDAD waiver participants will move to the Comprehensive DD (CDD) Waiver, using the overall monthly average of costs for individuals currently enrolled on the DDAD Waiver. 
      • DDD assumes adults will incur an average cost of $5,791.53 a month in SFY25 based on the current difference in DDAD and CDD costs (SFY23). 
      • Estimates based on 354 persons on the waitlist currently receiving DDAD Waiver.
    • DDD assumes children (under age 21 years) will require only services covered by the Family Support Waiver (FSW). Their average monthly cost will be $867 based on estimated costs for the FSW.
    • Children under 21 years old and needing services beyond the FSW, would be met through existing Priority 1 funding as is already appropriated/requested for this population on a biennial budget basis. Additional criteria for services beyond the FSW are being developed using a needs-based assessment (interRAI).
    • Children turning 21 years and moving to the DDAD Waiver will transition under existing funding that is already appropriated/requested for this population on a biennial budget basis.
    • Eight-hundred fifty slots are already accounted for under the new FSW. Assumptions in this proposal assume DDD will add another 442 slots to the FSW to accommodate individuals under 21 years enrolling from the Waitlist.
    • Adults over the age of 21 years, on the Waitlist currently not enrolled in any waiver at the start of SFY25, will enroll on the DDAD waiver.
  • ​The federal financial participation (FFP) was derived from the FMAP estimate of 58.60 percent in SFY24.
  • A two percent annual growth in rates was assumed.
  • Future growth and attrition of waiver participants is assumed to remain stable, allowing for new waiver entrants.
  • DDD will need to increase staffing to support the additional 442 children enrolling on FSW and adults enrolling on DDAD. These are not displayed on charts, and assumed to funded with existing appropriations as noted below:
    • DDD assumes needing approximately 10 full-time equivalents (FTEs) to support the additional 442 children on FSW.
    • DDD assumes needing approximately 19 FTE to support the additional individuals moving on to DDAD.
    • As is the current practice, DDD will review the feasibility of transitioning any surplus funding for the additional staff from the Beatrice State Developmental Center to support the need for additional waiver staff. Otherwise, appropriation requests would need to be made. 


Presentations

Director Green's Townhall Tour - October 2024

Director Tony Green toured the state in October 2024.  

DDD is transitioning from a time when individuals with intellectual or developmental disabilities (IDD) waited for services to a new way that will provide individuals with IDD access to specialized services when services are needed. The listening sessions were an opportunity to hear updates from the state about this transition and an opportunity to provide stakeholder feedback. 

Family Support Waiver Technical Assistance Sessions - July/August 2024

Developmental Disability Division (DDD) hosted private sessions to provide information about the Family Support Waiver (FSW). These provided an opportunity to meet individually with members of the DDD teams.  

Parents/guardians filled out forms to register for a Technical Support Session and were matched with our Eligibility & Enrollment (E&E) staff and/or Service Coordination (SC) staff to get questions answered and learn more about the services available. Each session was scheduled for 30 minutes. 

Phase I Update - July 2024

​Director Tony Green gives a video update as we move to eliminate the Developmental Disability Waitlist. 

During Phase 1 of the DD Waitlist elimination, we focused on analyzing our approach to determining levels of care for individuals receiving and applying for services. Nebraska has adopted the interRAI tool for use in DD waiver assessment as the State moves toward a needs based approach to services. 

Stakeholder interRAI Presentation - June 2024

DDD held three presentations for stakeholders to learn more about the new interRAI assessment tool that the Division is adopting in the DD side of our work. This company offers many different assessments for various populations, and we already use two of the interRAI tools in our Aged & Disabled and Traumatic Brain Injury Waivers. 

Myers & Stauffer guided a conversation and review of the interRAI tools for DD during these stakeholder meetings. Eventually these will become the tools used by the Division to determine budgets, level of care and as a needs assessment. Adopting these new tools will assist us in our new approach to eliminating the DD Waitlist.


​Resources​​

DD Waiver Information



Frequently Asked Questions​

My family member is currently on the Waitlist. What can I expect?

Once the waitlist is eliminated, DDD will begin offering eligible persons immediately available supports based on what they need. Supports may include Medicaid, Respite, Medically Handicapped Children's​ Program (MHCP), Service Coordination, or Waivers.

Re-Verification of developmental disabilities eligibility will continue to occur at ages 9 and 18 years.

If your needs rise to the level of a Priority 1 (you find yourself in crisis), contact DDD to be considered for the Comprehensive DD Waiver. 

The DD Adult Day Waiver will continue to be offered at age 21 years.

I currently receive Waiver services. Will I lose what I have as a result of the project to eliminate the Waitlist?

No. DDD is committed to ensuring people currently on waivers will continue to have access to the services they need. 

What is the process to access services and change from one waiver to another as my needs change?

Individuals who are currently on the waitlist will be contacted to determine need-based supports that are cost effective and in the least restrictive environment.

We will look at each person individually to determine what services are needed and connect them to a service such as Lifespan Respite, Katie Beckett Program, Medicaid State Plan Services, or a Medicaid Home and Community-Based Services Waiver.

There will be regulatory, Medicaid State Plan, and Waiver changes necessary to fully execute our elimination plan.

DD priority funding is based on priorities in existing Nebraska Revised Statute 83-1216. This will continue to be the process as we work to eliminate the registry.

​As an individual's needs change their Service Coordinator will assess to see if additional services or waivers are needed and work to connect them to those services.

Will my Service Coordinator be able to help me?

Yes. DDD is invested in training all Service Coordinators (SC) in the full array of service and support options. They will be able to support you in determining what service would best meet your needs and will provide additional information about available services. ​

How will the provider network be able to handle serving more people?

DDD is committed to supporting and increasing the provider network in Nebraska. The following methods have been identified:

  • Updating the Agency Provider Directory and creating an Independent Provider Directory.
  • Creating a Fiscal Intermediary to implement full self-direction (Employer & Budget Authority).
  • Paying Family Caregivers, including Legally Responsible Individuals (LRI).
  • Enhancing Lifespan Respite, including equitable reimbursements.
  • Credentialing Direct Support Professionals (DSPs) through work with Munroe-Meyer Institute (MMI).​
  • Working with MMI to develop Direct Support Professional training curriculum.
  • Provider rates increase another 2% in July 2024; this equates to a 36.6% increase since 2020. Additional reviews of agency provider costs and direct support wages are ongoing. ​​
  • Over the last three years, $47.5 million in American Rescue Plan Act (ARPA) funding has gone to providers.
  • ARPA grant funding for frontline supervisory training.
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Who is considered a Legally Responsible Individual (LRI), and can they provide waiver services?

A Legally Responsible Individual (LRI) is defined as a spouse or the natural or adoptive parents of a minor child. Currently in Nebraska, a LRI cannot provide any Medicaid HCBS waiver services.

A Legal Guardian is defined as a person appointed by a court to serve as a guardian for a someone ages 19 years or older. Currently in Nebraska, a Legal Guardian can provide some AD Waiver services, but cannot provide any DD Waiver services. See the LRI Reference Guide for details.

A Family Member is defined as immediate family only, excluding LRI, including children and siblings.

Currently in Nebraska, a Family Member can provide AD Waiver services and some DD Waiver services. See the LRI Reference Guide for details.

How can DDD afford this? Where is the money coming from?

The previously estimated amount to eliminate the Waitlist was based on a simple calculation of the number of participants on the waiting list multiplied by the average Comprehensive DD Waiver cost at the time. 

In the future, eligible participants will receive a variety of supports such as Medicaid, Respite, Medically Handicapped Children's Program, Service Coordination Only, or Waiver services. Each of these items has a different funding amount. 

Additionally, the $18 million does not include the available federal match. 

How will success be measured?

Success will be tracked and numbers shared via a data dashboard.

  • Success for Phase 1: All children from birth to 21 years of age will remain on or be offered an available support option(s).
  • Success for Phase 2: All adults over 21 years will be contacted to discuss current services or offered an available support option(s).
  • During both phases and ongoing, for any person entering a Waiver, DDD will track the date of their Individual Service Plan (ISP) completion to the date of their first delivered service. This will monitor for a “hidden waiting list."


Still Have Questions? Contact Us!
Division of Developmental Disabilities/ Department of Health & Human Services
Phone Number
(402) 471-8501
Toll Free Number
(877) 667-6266
Fax Number
(402) 742-2309
Mailing Address
P.O. Box 98947, Lincoln, Nebraska 68509-8947