Family & Individual Leadership and Advocacy

There are many opportunities for individuals with disabilities and family members to become involved in leadership roles. These include:

Nebraska Planning Council for Developmental Disabilities (State) Council

This federally-funded council is located in the Nebraska Department of Health and Human Services Department of Public Health. It is part of a national network of councils that represent  federal-state partnerships to develop futures for and with people with developmental disabilities and their families. The council is composed of 24 governor-appointed members who serve for a three-year term. The council is required to have more than 60 percent of members be people with developmental disabilities or their family members. For more information, contact Kristen Larsen at 402-471-9570.

Nebraska Planning Council for Developmental Disabilities Regional Councils

There are six regional councils that work to help the state council meet its goals at local levels and to assist with grant reviews, hosting public forums, and advocacy efforts. Membership must include local representation of people with developmental disabilities and their families.

Nebraska Governor’s State Advisory for Developmental Disabilities

Members guide and assist the state developmental disabilities director on developmental disabilities services and supports. Members are appointed by the governor.

Community Advisory Board (CAB) at the Munroe-Meyer Institute

The University Center for Excellence in Developmental Disabilities (UCEDD) grant is required to have an advisory board. Membership is required to be 51 percent of people with disabilities and their families and represent both the geographic and demographic composition of the state. The primary role of the CAB is to advise the UCEDD director and staff on the grant activities. Members are term limited and the board actively seeks new members.

Disability Rights Nebraska

This primarily federally-funded organization is part of a national network created to assist individuals with disabilities and their families in protecting and advocating for their rights. It has many governing boards and is required to have composition of the people they represented.

Early Development Network (EDN) Planning Region Teams (PRTs)

There are 29 Early Childhood Planning Region Teams in the state. Each one is an interagency coordinating council made up of local schools, health and human service agencies, Head Start, families and others. State law requires that the PRTs include as members at least 20 percent families of young children with disabilities (under the age of 12).

Early Childhood Inter-Agency Coordinating Council (ECICC)

The council is an advisory to the state’s Part C (Early Intervention) system, the early childhood block grant (for childcare) and Head Start and Early Head Start. Federal and state law requires that the council include family members of young children with disabilities as at least 20 percent of its members. For more information, call 402-471-2295.

People First of Nebraska

This is the only advocacy organization run by and for people with any disabilities in Nebraska. For more information, contact Kellie Ellerbusch at 402-559-4892.

ARC of Nebraska

Advocacy organization for people with intellectual and developmental disabilities and their families. It is part of a national network that works to insure that policy and legislation promote the most positive outcomes. The Nebraska ARC has a governing board and advisory committees that are required to include people with developmental disabilities and their families. For more information call 402-475-4407.

Nebraska Youth Leadership Council

The council supports young leaders from across the entire state of Nebraska who want to make a difference in the lives of students with disabilities. This council is composed of youth with disabilities and is supported by Nebraska Vocational Rehabilitation. For more information, contact Elizabeth Paesl at 402-670-1437.

Nebraska Statewide Independent Living Council (NE SILC)

The NESILC is an organization that is federally required under the Rehabilitation Act. The NESILC is composed of people with all types of disabilities that represent all areas of the state. The mission of the council is to partner with the Independent Living Network to promote independent living and facilitate systemic change that promotes independence, inclusion, non-discrimination and dignity for all people with disabilities in Nebraska. Members serve for three-year terms. For more information, contact Kathy Hoell, NESILC Executive Director at 402-438-7979.

LEND Family Trainee

Each year the UNMC Munroe-Meyer Institute recruits a family member to complete a short-term traineeship in the Leadership Education in Neurodevelopmental and Related Disabilities (LEND) training program. The family trainee receives mentoring from a family faculty member and participates in seminars and other practica with other LEND students. For more information, contact Kristin Mayleben Flott at 402-559-0632.

UCEDD Trainee

Each year the UNMC Munroe-Meyer Institute, as part of the University Center for Excellence in Developmental Disabilities (UCEDD) program recruits one or two short-term trainees who want to further their knowledge base and be provided experiences that will help them further their leadership and or help launch them into a career related to enhancing services for people with disabilities and their families. This is a paid traineeship. For more information, contact Mark Smith at 402-559-5744.

UNMC Office of Government Relations

Join the UNMC Delegates program and advocate. Members are kept informed about federal and state legislation affecting UNMC, and are invited to free events throughout the year. It is free to join.

Local ARC's across Nebraska

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