White Paper on the status of developmental disability services in Nebraska
December 31, 2008

Number of people needing support as of December 31, 2008
• There are approximately 4,574 people receiving specialized developmental disability services in the community and 257 people residing in state institutions at Beatrice State Developmental Center and the Bridges program in Hastings. There are also 239 people living in three private ICF-MRs in Beatrice, Axtell, and Grand Island.
• There are 2919 people on a registry waiting for services across the state now or sometime in the future. Of those, 1981 are past their requested date of need or have requested services by December 31, 2008. Some people on the list have been waiting since January of 2003. The decision by several HHSS administrations to only fund day services for graduates has contributed to the waiting list.
• It is difficult to estimate the number of people who are not receiving services and are not on the registry.

Additional Information
• Nebraska uses "means testing" to determine fees for individuals or families with minor children based upon financial ability to pay. These fees are collected by HHS.
• HHS determines eligibility and funding for each individual, the individual and their family choose his/her provider. The person's funding follows the person if he/she chooses another provider.
• The Medicaid Waiver provides a match for Medicaid waiver eligible people in the system. The match is 59.54 percent Federal, 40.46 percent state and local. These funds have provided the bulk of increases to the system over the last decade.
• Providers are required to provide documentation of habilitation and must meet specified service needs that are driven by an Individual Program Plan (IPP).
• Accountability is provided by a system of certification, regulation, complaint investigation, service coordination monitoring as well as oversight by local boards and advisory committees, advocacy groups and consumer satisfaction surveys.
• Fiscal accountability is provided by statute and regulation.

Issues needing attention by the administration and legislature.
• Waiting list - There needs to be a plan to address the waiting list in a systematic way. There are several approaches that can be taken but we must have a measurable way of determining whether we are making progress, two possible measures include the length of the waiting period or the percentage of eligible people served. The Developmental Disability Services Act stated the intent to address the waiting list but money has not been appropriated. In addition, the Federally mandated agency, Nebraska Advocacy Services has a current lawsuit against the state for the long waiting period and method of determining the amount of money allotted for each individual.
• The funding methodology is based on 90% of a salary at Beatrice State Developmental Center that is not used as a base salary because of an inability to recruit staff into that position. With recent salary increases at BSDC current rates are much lower than the 90%. The major increased costs in human services have been in the area of benefits due to increased cost of health insurance and training to maintain a competitive wage to attract and retain qualified professional staff.
• The basic assumptions of the funding methodology need to be examined. Changes in the last 14 years include increased transportation costs, medical services support, sleep time and increased regulation. The support needs of person receiving services have increased due to changes in eligibility criteria. In addition, benefits originally computed at 20% of salary in the model are closer to 40% today.
• While the funding methodology is complex, the basic concept is that whatever percent increase state employees receive at BSDC should be provided to community based providers. Community providers face all the same issues of increased cost of insurance, difficulty in recruiting and retaining staff and increased demands through regulatory agencies. It still costs the state significantly less than if state employees were to provide the supports.
• There needs to be a clearly understandable and fair way to determine the amount of support that the state will provide to an individual. While there is no perfect Objective Assessment Process (OAP), we need to agree on an effective assessment process that is flexible and changes with the needs of the individual.
• Quality needs to be defined by people supported and families, as well as officials.
• We need to remove the requirement for an elected official to be on the boards or advisory committee of certified providers. Public agencies are governed by county commissioners and need no additional representation on the advisory committee that has only the power to make recommendations. Private agencies find it cumbersome and ineffective to recruit an elected official.