Below is our comments on the Olmstead Plan draft. If you have comments you would like to add you can email firstname.lastname@example.org to see the draft plan click here. These are just initial comments on an evolving plan. We hope this is realistic, quantitative, has serious actions, and is followed up on.
To Whom It May Concern
Hello, my name is Edison McDonald. I am the Executive Director for The Arc of Nebraska. We represent people with intellectual and developmental disabilities across the state. Over a decade ago, the Nebraska Legislature said in LR 156 that, “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 D.D. and their families.” It seems that we have still failed to take the sort of serious action needed to help people with disabilities.
We have worked to be engaged in the Olmstead process by bringing legislation to ensure that DHHS was no longer out of compliance with state and federal law. Our hope that this plan would provide a quality strategic plan to ensure proper supports for people with disabilities and that this would meet the requirements of an Olmstead plan that would protect the state from litigation. We are concerned this draft fails to meet those requirements. In particular, the funding to close the Waiting List must be improved from this draft. The following addresses several of our concerns with this plan. (Items in Parentheses are included to more easily identify the main section this addresses however have implications throughout)
1 Increase Developmental Disability Funding (Goal 1 and 2)
The underpinning of all of the Olmstead Lawsuit and requirements for a plan are the vital actions necessary to decrease the Waiting List. This draft plan not only fails to adequately address ways to reduce the Waiting List. But with the 1% increase will fail to keep up with inflation (as seen in the quote below from the Nebraska Consortium for Citizens with Disabilities (NCCD) and Disability Rights recent study seen below). Therefore, the proposed “increases” will actually lead to an increased Waiting List. This will leave the state legally liable and fail to meet the intention of this process.
“Assuming a 6% annual growth of people needing services and a 5% growth in per-person costs per year, the state will need to increase its annual spending on developmental disabilities by $113 million in the next five years. Under the same conditions, the state would have to spend an additional $67 million in 2024 to eliminate the waiting list, though costs would be lower in earlier years depending on the phase-in.”
Other tools need to be implemented in order to accomplish these goals in a financially responsible way.
2 Create a Family Support Waiver. (Goal 1 and 2)
Family caregivers are the backbone of our long-term services and support systems (LTSS). In the U.S., the majority of LTSS is provided by unpaid caregivers-family or friends. Recognizing that our population is aging, and state Medicaid budgets continue to grow, states are looking to identify strategies to reduce Medicaid expenditures but also make sure care is provided.
One approach many states are taking is to enhance support for family caregivers.
When family caregivers have the proper supports, they can continue in their caregiving role. Of the estimated 6.2 million people in the United States with intellectual or developmental disabilities (IDD), most live with their families. Recent studies from the University of Minnesota estimates that less than 1/3 of individuals with IDD are actually being served by state agencies. A family support waiver implementation in this plan could help to ensure access to supports that would address several of these goals.
3 Fund an Autism and/or IDD/ Mental Health Waiver (Goal 1 and 2)
Many children with autism are not able to access medical therapies because their family’s private insurance will not cover this service. However, Medicaid will cover this service. Currently, Nebraska has an autism waiver that has been approved by the CMS; however, because there is no funding to support it, it isn’t helping any children/families. The Waiver can provide a pathway for children to gain access to Medicaid by considering only the child’s income and resources. Doing so allows the child/young adult to gain access to Medicaid and his family caregivers to remain in the workforce. The current CMS-approved Waiver could be updated to reflect current community needs and provide an additional pathway to support individuals with autism, IDD, and mental health concerns. Utilizing a Medicaid Waiver would allow the state to obtain federal matching dollars. It could offer a venue for individuals with more challenging behaviors to access both residential supports and intensive services they need. Further, it would help the state meet its obligation to serve individuals with disabilities in the least restrictive environment as required by the U.S. Supreme Court’s ruling under Olmstead. It is highly likely that Nebraska is already supporting these individuals -just not in the least restrictive or least costly setting.
4 Alter Priority 1 Category to include imminent dangers (Goal 1 and 2)
One of the most significant issues affecting individuals at risk of being forced into institutional settings is when we see people who are clearly about to be placed in D.D. Priority Category 1 yet are unable to take action until they are in an emergency situation. By altering the language in priority 1 to include “imminent” situations, those who are clearly at risk will be able to access help.
5 Better tracking of Metrics (Goal 1, 2, and 6)
This plan must include quantifiable and trackable metrics. These metrics need to regularly be updated on a publicly available and easily accessible website. Minnesota’s Olmstead plan has a great format to more easily layout trackable metrics. Below is a list of some of the key metrics that need to be included:
Waiting List Size
Emergency Room Usage
Access to Case Management
6 V.R. Waiting List (Goal 4)
We are excited to see eliminating the V.R. Waiting List as a goal and metric. However, we are concerned that with the cycle of the last few years that this may come back at a later point. We want to ensure this is continually monitored and realistically planned for.
7 Milestones need to be looked at and tracked on a broader level.
The V.R. milestones should clearly and definitively state what services are and are not provided through the milestones. We are excited at the recent state change regarding pre-vocational services, but this is still an important first step.
8 Exclusionary, harmful, and restrictive practices (Goal 4)
We need to track and reduce exclusionary, harmful, and restrictive practices. We are concerned with the school to prison pipeline. This is increased by practices like forced shortened school days, mislabeling, lack of focus on inclusive education, use of restraint, lack of resources, use of seclusion, and the less than smooth transition process. We need to track metrics around these issues and work to limit these.
Tools to do this can include increased training, ensuring proper school funding, more intentional outreach to families, and focus on under-resourced communities.
9 Expanding Service Hours and Service Areas (Goal 5)
While we appreciate the difficulty of addressing the issues around transportation, increased boarding numbers are only a part of the problem. To ensure inclusion, we need broader trackable data, especially around service hours. Many current providers have limited Monday to Friday 9-5 hours. This makes employment, social inclusion, and regular tasks difficult. Expanding weekend availability, available hours, and service areas must be included.
10 Increased Pay for DSP’s and Implementing the Rate Rebase(Goal 7)
While we recognize that this is an expensive issue to say that we want to support a “High-Quality Workforce” without goals around provider pay and especially DSP pay seems less than sincere. We know, other things contribute but there is nothing like ensuring increased pay, benefits, and supports. There have been several legislative bills that we have supported recently that target this that would be helpful guides.
11 Increased supports for Independent Providers
As a stated Core Principle of “Individuals with disabilities and their families will be supported in controlling decisions about their lives, selecting from an array of services, supports, and providers.” We believe ensuring access to Independent Providers is essential. In particular, we have seen issues with a lack of training leading to problems. While agencies have the resource to develop trainings, ISP’s do not have access to these opportunities. Training will help to provide better options, improved support, and decreased issues, particularly in rural communities.
12 Correctional Services (Goal 3)
While reports have said that less than 20 people with disabilities are in the Correctional System, we find this highly suspect. While statistical data shows that “32 percent of federal prisoners and 40 percent of jail inmates report at least one disability.” according to LDA. We are unsure of the best ways to ensure improvements in this area as we like to base our judgment upon data and not just speculation. It seems one of the first steps is a better screening process to ensure proper diagnosis would be the first step. Following identification, we believe improved tracking tools monitored by the Inspector General for the Corrections Department could lead to data that would be helpful for future updates.
13 Focus on Rural Communities (All goals)
One of the sharpest differences we see in services is between urban and rural communities. While we recognize the intention of the Core Principles, we believe that the necessary focus on rural communities is not properly included throughout the document. Ensuring that metrics are tracked with varying sizes and locations of communities is important. This needs to be subdivided probably based upon D.D. Regions or cities based upon class sizes as defined by the Nebraska Legislature.
These are some of the largest issues that we see however we hope this will be an ongoing dialogue.
The Arc of Nebraska