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

FOR IMMEDIATE RELEASE

Contact: Edison McDonald, Executive Director, The Arc of Nebraska, 402-475-4407 or [email protected]

Disability Advocates Kick Off Grassroots Campaign to Ensure Access to Vital Services

Lincoln, Nebraska, July 2, 2019 – “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.” This is what the 2008 LR 156 report said over a decade ago.  Yet we have instead allowed this waiting list to grow and vulnerable Nebraskans to go without vital services.

In reaction to this disability advocates are taking up a new grassroots drive to end the Developmental Disability Waiting List.  “It is absolutely unacceptable that we have over 2,332 Nebraskans with disabilities who are not receiving these vital supports.” Said Edison McDonald Executive Director for The Arc of Nebraska.  They have been forced onto a waiting list that could require them to wait for years to access vital services.  This waiting list forces them to consider more expensive and segregated settings.  This average cost per Nebraskan with a disability could be hundreds of thousands of dollars per citizen with disability.  We must do better.

Launching off a petition drive, community conversations, and careful research of the issue advocates are ready to take on this significant issue for Nebraskans with Disabilities.  The first community conversation will happen at the annual Disability Pride Event at The Nebraska State Capitol on July 12^th at 1pm.  For more information please refer to https://www.arc-nebraska.org/end_the_waiting_list

About The Arc of Nebraska

For over 60 years, The Arc of Nebraska has provided advocacy to people with intellectual and developmental disabilities and their families. A nonprofit organization governed by a Board of Directors, The Arc has more than 1,500 members across the state.

The Arc of Nebraska has been working for over 60 years to ensure that people with developmental and intellectual disabilities can live in the community. Previously, the status quo was that people were forcefully segregated into isolation in institutions. Now 2,332 people qualify for services under the developmental disabilities services waiver but are not receiving funding. They instead have been relegated to a waiting list that could be years away.

We want to gather first-hand data, stories, and develop a coalition to take on the waiting list.  Together we can ensure that people with disabilities are appropriately supported.

Waiting lists are not unique to Nebraska.  This significant issue has inspired a great amount of research, conversations, legislation, and tools working to address it.  Here are some resources that can help to inform you further about the detrimental effects on waiting lists.  But more importantly our hope is that these resources help to inform people about ways in which we can ensure more people have access to needed services.

Arc Blog About The Waiting List

Case for Inclusion Comparative State by State Data

Disability Scoop Update on Waiting Lists

DHHS Developmental Disability Division

Nebraska Legislature Resolution 156 Report (2008 the last significant study in Nebraska)

Kaiser Family Foundation State by State Data

We are especially excited about the presentations we have provided on Nebraska Systems Issues!  If you have missed it and want us in your town let us know!

End The List Presentation

Pathways to Medicaid

Help us to get the word out about #EndtheList  We need your voice to help spread how important it is to ensure everyone has access to vital services that they need.

The Arc of Nebraska has been working for over 60 years to ensure that people with developmental and intellectual disabilities can live in the community.  Previously, the status quo was that people were forcefully segregated into isolation in institutions.  Now 2,332 people qualify for services under the developmental disabilities services waiver but are not receiving funding.  They instead have been forced onto a waiting list that could require them to wait for years to access vital services.

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.

(Sign Petition Below)

The Waiting List is not just a recent problem.  We began this debate nearly 60 years ago as we worked to move people into community settings.  However, despite significant strides, we have left many Nebraskans without access to the vital care that they need.  Here are some of the many steps that have occurred in that time period.

• 1850 – 1950
  • Institutional care began in Beatrice
    • Nebraska Institution for Feeble-Minded Youth, Beatrice State Home
  • Forced sterilization: no consent required
• 1950 – 1960
  • Greater Omaha Association for Retarded Children (GOARC) founded
  • Nebraska Association for Retarded Children (NebARC) founded
• 1960 – 1970
  • Governor Morrison created Interagency Committee on Mental Retardation (same happening at the national level)
  • Legislature established the Office of Mental Retardation within Department of Health
  • Lee Terry of KETV Channel 7 Documentary series on Beatrice State Home (Out of the Darkness)
  • Legislature passed 14 laws to provide for creation, funding & coordination of community-based programs throughout the state
• 1970 – 1980
  • Eastern Nebraska Community Office of Retardation (ENCOR), first regional community services agency, formed by four county governments
  • Pilot Parents Program in Omaha by GOARC
  • Horacek v. Exon lawsuit
  • People First movement began
  • Individual Program Plan (IPP) process began
  • PL 94-142—Education for All Handicapped Children Act (later became IDEA)
• 1980 – 1990
  • Home & community-based waiver services for children with mental retardation & their families approved for Nebraska
• 1990 – 2000
  • ARC began quality review teams
  • Governor Nelson’s Blueprint for Action addressed the waiting list
• 2000 – 2010
  • Waiting list grows
  • Conditions at Beatrice State Developmental Center are brought to light
  • Changes to services delivery
• 2010 – present
  • Introduction of Managed Care
  • Establishment of Enable Savings Accounts
  • Historic Budget Cuts, Cuts to Transition Services, and various cuts to Medicaid lead to new struggles that have forced many to reconsider institutions
• 2020
  • End the Waiting List

The Arc of Nebraska has been working for over 60 years to ensure that people with developmental and intellectual disabilities can live in the community.  Previously, the status quo was that people were forcefully segregated into isolation in institutions.  Now 2,332 people qualify for services under the developmental disabilities services waiver but are not receiving funding.  They instead have been forced onto a waiting list that could require them to wait for years to access vital services.

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.

Click Here to Sign the Petition