Executive Summary

Nebraska is facing three intertwined crises that have a stranglehold on our Medicaid Waiver System. In order to address these issues we have assembled this paper to identify the issues, analyze solutions, and offer proposals to remedy the following issues.  Click this link to see the full paper The_Arc_of_Nebraska_Waiver_Study.pdf

The following require immediate attention:

Provide support to children with disabilities being found ineligible for Nebraska’s Aged & Disabled (A & D) Medicaid Waiver

Changes implemented to the state’s A & D Waiver is causing children/families to be found ineligible based upon increased scrutiny over the Level of Care Assessments. 

Provide a pathway for individuals with disabilities to gain access to job coaching and employment supports by identifying a way to eliminate the new Waiting list for services from Vocational Rehabilitation

 State interpretation of federal regulations means that individuals with disabilities are not able to access job coaching or employment supports - something that is not occurring in other states.

Eliminate the 6-8 year Waiting List for Developmental Disabilities

The lack of a cohesive for the delivery of long-term services and supports, failure to properly leverage alternative funding sources (federal and state funding, private insurance, and families’ dollars) has created a fragmented patchwork state system that has had few true updates since its creation. 

We can far better serve Nebraskans by stepping back and approaching these issues with a systematic and broader vision.  This paper has been assembled by a group of parents, professionals, academics, and self-advocates in order to better analyze and create a framework for some systematic improvements that we believe will make the world a bit easier for individuals with intellectual and developmental disabilities and their families.

Our primary policy opportunities include:

1 Creating a Family Support Waiver

2 Increase Developmental Disability Funding

3 Fund an Autism and/or IDD/Mental Health Waiver

4 Revise and streamline our plethora of advisory committees

5 Properly implement the Rate Rebase

6 Amend our Appeals System

7 Increase Adverse Notice Timeline and Notice Standards

8 Provide an opportunity to recoup attorney costs on appeals cases

9 Be the final state in the nation to have an Employment First Proclamation

10 Modify our First Dollar In requirement for Vocational Rehabilitation

11 Implement the Family Opportunity Act

12 Revise regulatory standards to protect the sanctity of marriage



Aged & Disabled Waiver Issue

Celeste is a beautiful, happy and fun-loving three-year-old.  She loves books, knocking down block towers and going to the swimming pool. When you see her, she will most likely have one of her award-winning smiles for you. Her disability doesn’t define her, but it is a huge factor in her life. Her diagnoses include: a brain cyst, agenesis of the corpus callosum, hypotonia, aberrant subclavian artery, malrotation, hearing loss, exotropia, oral aversion, and previously failure to thrive but now tube fed. Nearly 100% of her calories are put through the tube. She is also suspected (not yet confirmed) to have a tethered spinal cord. Her family is also currently awaiting approval for further genetic testing because even with the feeding tube she’s very petite. All these diagnoses together make it difficult for Celeste to live the life of a typical three year old. She doesn’t stand on her own, walk or talk and is nowhere near being ready for potty training. She can’t consume enough calories on her own to sustain herself. She can’t have normal bowel movements without medications to help her. She is at a higher risk of bowel obstructions or life-threatening volvulus in her intestines.

Celeste’s family has private insurance, but without the waiver, her family would be paying nearly $1,400 a month just for the necessary medical supplies and specialized formulas. This doesn’t even include the necessary therapies Celeste requires in order to reach her maximum potential or the childcare necessary for her parents to maintain their teaching careers. Without the waiver, her parents would have to work additional jobs to cover the nearly $2,000 worth of bills; but, that would add additional stress fitting in nearly 40 hours a week on top of teaching and getting Celeste to her therapies--exposure to stress that Celeste doesn’t need or deserve. Another option would be for them to quit their careers and move to lower-paying jobs in order to meet the income requirements to qualify for Medicaid, move out of state or take on an astronomical amount of debt. The idea of losing the waiver has led to a great deal of stress and even the consideration of keeping Celeste out of therapy for fear of her making “too much progress.”

The waiver for Celeste has meant more than medical bills being paid- its more time with her parents at home helping to extend what she does in therapy. It has meant time for her parents to use respite care and invest in their marriage, son, careers, and community.


Developmental Disabilities Waiver

Erin Phillips is a powerful self-advocate, works for Super Saver, has a second job with People First of Nebraska, and is engaged in her community.  This was not the case ten years ago when she was placed on The Waiting List for people with developmental disabilities to get access to residential services.  While in school, she had made great strides towards independence and self-sufficiency.  Without that support, she slid back.  Obviously, this led to a great amount of frustration for Erin.  Eventually, she got the call that she had made it to the top of the list.  This has helped her be the fun, happy individual we see today.

Sixty years ago, people with developmental disabilities were forced into segregated institutions, unable to live with their friends, families, and communities.  Now, 2,332 people qualify for services under the developmental disabilities services waiver but are not receiving funding.  Instead, they have been forced onto a waiting list that will require them to wait years to access vital services.  This means that they are being supported by their families- many of whom are aging.  Many individuals with IDD who are nearing retirement age themselves are still being cared for by their aging parents.  Children with IDD and behavioral health issues who may pose a risk to themselves or others cannot access support.  Young adults with IDD who don’t have the necessary support frequently encounter police.  Rather than providing more preventative and less intensive HCBS, we are supporting these individuals through foster care placements, prison/juvenile detention and nursing facilities.  Unfortunately, these are much more costly to tax-payers and is also at a significant cost to both the individual and family.

Over a decade ago, the LR 156 report said, “Nebraska is at a crossroads with its obligation to Nebraska citizens with developmental disabilities. Several Nebraska Senators have recognized the urgent need to develop a strategic plan to address the current and future needs of citizens with DD and their families.”

It seems that we have still failed to take the sort of serious action needed to help people with disabilities.  It’s time to ensure that we fully fund the waiting list.


Vocational Rehabilitation Waiting List

Many individuals with disabilities want to obtain competitive jobs and a career path.  Unfortunately, there are systems issues that are preventing them to access the support they need to do so.

Nebraska has one of the lowest unemployment rates across the United States.  This means that employers are having difficulty finding individuals to fill their needs. “This is now the most pressing economic issue in the state,” stated Bryan Slone, president of the Nebraska Chamber of Commerce and Industry. “It doesn’t get a lot of attention, but we are on the cusp of this becoming the 1,000-pound gorilla.”’ (Omaha World-Herald article)  In contrast, many Nebraskans with disabilities have difficulty finding employment, keeping acceptable benefit levels, and ensuring employment stability.  It seems that one of the best opportunities to address this workforce crisis is by ensuring people with disabilities can work. However, the system has to be built so that they can do so.

While the Developmental Disability Waiting List is a decades-old issue we have seen a more recent Waiting List pop up.  The Vocational Rehabilitation Waiting List is now even larger than the DD Waiting List.  Although this only affects employment issues, it seems that this is antithetical to the current Nebraska workforce crisis. 

While there is some hope in legislation (such as LB 323 sponsored by Senators Linehan and Crawford), it seems that we still need further steps in order to ensure employment opportunities for individuals with Developmental Disabilities.  One unique opportunity is that Nebraska is the last state in the nation to set an Employment First Proclamation. Implementing an Employment First Proclamation would make competitive, integrated employment the first option for individuals with disabilities who are receiving public benefits.


If you would like to read the full report please click here. The_Arc_of_Nebraska_Waiver_Study.pdf

Please contact us if you have any questions at (402) 475-4407