Self-Advocacy

Self Advocacy Coordinator

Identified as a need in Nevada, Self-Advocacy is defined as the act of speaking on the behalf of or in support of another person, place or thing. This can mean people speaking or acting on their own behalf to improve their quality of life, or correct something that is wrong.

Our Self-Advocacy Coordinator is responsible for the Self-Advocacy Initiatives in Nevada. Duties include but are not limited to:

  • Provide the guidance, support, outreach, organization and direction needed while enabling self-advocates to be as empowered, responsible and independent as possible.
  • Convene regular meetings (video-conference, telephone or in person) with I/DD Network representatives and individuals across the state to promote relationship building, information and resource sharing.
  • Identify and share funding opportunities to assist self-advocacy organizations in achieving/maintaining sustainability.Attend statewide committees and councils comprised of multiple agency representatives and bring that information back to the self-advocates.
  • Attend Self-Advocacy and other developmental disability related organization meetings to work collaboratively with these organizations to gather and provide information and guidance about other organizations, grant opportunities and legislative initiatives.
  • Attend community awareness/PACE events at the NGCDD table to talk with individuals and organizations about self-determination, self-advocacy and other resources.
  • Ensures new and relevant information about self-advocacy issues is provided to organizations in a timely manner via email or other alternative methods.
  • Facilitate the collaboration of the Youth Leadership Initiative (Y.E.S.!).
  • Work in partnership with other NGCDD staff to establish a partnership with a culturally diverse organization in each region of the State, help provide education, information and training to develop leaders within the identified organization to support and expand participation of those with I/DD.
  • Work with AIDD partners, including NGCDD staff to support leadership training for people with I/DD and their families.

Advocating Change Together 2019 Self Advocacy Conference

The NGCDD in conjunction with the Developmental Disabilities Network Partners hosted the Advocating Change Together 2019 Self-Advocacy Conference on September 16 & 17 in Las Vegas, Nevada. Registration was FREE and open to individuals with intellectual/developmental disabilities (I/DD). This conference was not for parents, family members or professionals, unless they were serving as a personal care attendant (PCA) for an individual with I/DD attending the conference.

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Planned by and for Self-Advocates, the Conference brought 52 individuals with intellectual/developmental disabilities (I/DD) together from all areas of the State to teach, discuss and learn from each other on topics of their choosing.

Individuals with I/DD attended breakout sessions taught or co-taught by other individuals with I/DD covering a wide variety of topics including: Supported Decision Making, employment, mentor programs, ABLE accounts, community-based services, person-centered planning, advocating beyond your comfort zone, sexuality and disability and healthy living. Attendees were also present for the 2019 Partners in Policymaking graduation ceremony held the second day.

Session Information and Materials

ABLE Accounts

Materials for ABLE Presentation

How ABLE accounts help people with disabilities save for the Future – Erik Jimenez and Jack Rovetti – This presentation focused on how the passage of the ABLE Act has resulted in one of the biggest opportunities for increasing competitive, integrated employment for people with disabilities.

Advocating Beyond Our Comfort Zone

Materials for My Life in a Neuro-Typical Closet

My Life in a Neuro-Typical Closet – Alison Greathouse It is high time that autistic adults be consulted when designing programs for autistic children. (I recently attended a professional training where a presenter dismissed this idea as laughable.) I am raising my children the way I wish I had been raised. I would love to show you how.

Community Based Services and Person Centered Planning

Please contact the speaker Alex Kimnel regarding information from this session at alex.kimmel@hotmail.com.

Possibilities– Alex Kimnel – Michigan Developmental Disability Institute created the “Possibilities!” Video project. “The purpose of the series is to present a vision of how individuals with developmental and intellectual disabilities and their families can lead the lives that they wish to lead, without barriers, and in the direction, they truly intend to go.”

Supported Decision Making

Supported Decision Making Agreement Workshop – Santa Perez and Homa Woodrum – Supported Decision Making is a way to control your choices and have them recognized by others while having a little help. Learn a little about Nevada’s Supported Decision-Making law and how to customize one of these agreements for yourself!

Mentor Programs

Materials for Happy and Healthy Session

Health Transition and the ICDI Mentor Program | Happy & Healthy- Travis Mills and Diana Rovetti– Information on the I Can Do It (ICDI) Health Promotion Mentor Program and health care transition for CYSHCN with a focus on pediatric to adult health care transition as well as the Medical Home and the Nevada Medical Home Portal.

Sexuality and Disability

Magic-able Unicorns – Janiece Tribble –  brought to light the misconceptions and myths about individuals with I/DD and sexuality that prevent youth and adults with I/DD from being able to express their sexuality.

Employment

Materials for Employment Accommodations Session

Employment Accommodations – Kate Osti – Kate will discuss employment accommodations such as what types of accommodations are possible, when to disclose accommodations, what accommodations are available, etc. As a personal with visual impairments, she offers a unique experience and input on this topic.

Keynote Speaker

Kayla McKeon

Kayla McKeon

Kayla works for the National Down Syndrome Society as the Manager of Grassroots Advocacy and is the first registered lobbyist in the nation who happens to have Down Syndrome. As a motivational speaker with Down Syndrome, Kayla McKeon draws on her experiences as an individual with a disability whose positive attitude inspires others to reach their highest potential.

Supported Decision Making Session by Homa Woodrum and Santa Perez
Supported Decision Making Session by Homa Woodrum and Santa Perez
Jesse and Maria Rojas
Jesse and Maria Rojas
Homa Woodrum with Council Member Santa Perez. Supported Decision Making Session Presenters
Homa Woodrum with Council Member Santa Perez. Supported Decision Making Session Presenters
Main Session of 2019 Self Advocacy Conference
Main Session of 2019 Self Advocacy Conference
Powerhouse Advocacy Family - The Thornley's (Pictured is Council Member Jodi Thornley)
Powerhouse Advocacy Family – The Thornley’s (Pictured is Council Member Jodi Thornley)
Homa Woodrum, Assemblywoman Cohen and Kari Horn.
Homa Woodrum, Assemblywoman Cohen and Kari Horn.
Homa Woodrum with Council Member Santa Perez. Supported Decision Making Session Presenters
Homa Woodrum with Council Member Santa Perez. Supported Decision Making Session Presenters
Assemblywoman Cohen and Self Advocates Dora Uchel and Juan Martinez with their service animal.
Assemblywoman Cohen and Self Advocates Dora Uchel and Juan Martinez with their service animal.
The group traveling to Las Vegas for the 2019 Self Advocacy Conference
The group traveling to Las Vegas for the 2019 Self Advocacy Conference
The Class of 2019 Partners in Policymaking Nevada
The Class of 2019 Partners in Policymaking Nevada
Jack Rovetti speaking on ABLE accounts in Nevada.
Jack Rovetti speaking on ABLE accounts in Nevada.
Executive Director, Kari Horn providing opening remarks.
Executive Director, Kari Horn providing opening remarks.
Some of the crew traveling to Las Vegas for the 2019 Self Advocacy Conference
Some of the crew traveling to Las Vegas for the 2019 Self Advocacy Conference
Self Advocates at the 2019 Self Advocacy Conference
Self Advocates at the 2019 Self Advocacy Conference
2019 Self Advocacy Conference Main Sessions
2019 Self Advocacy Conference Main Sessions
Breakout at the 2019 Self Advocacy Conference
Breakout at the 2019 Self Advocacy Conference
Family Member Ron Santi supporting the Aktion Club of the Carson Valley.
Family Member Ron Santi supporting the Aktion Club of the Carson Valley.
Stephanie Wynn receiving her graduation certificate for the 2019 Partners in Policymaking class, from Kari Horn (Executive Director) and Stephen Schumacher (Chair)
Stephanie Wynn receiving her graduation certificate for the 2019 Partners in Policymaking class, from Kari Horn (Executive Director) and Stephen Schumacher (Chair)
Executive Director, Kari Horn and Keynote Speaker, Kayla McKeon
Executive Director, Kari Horn and Keynote Speaker, Kayla McKeon
Travis Mills speaking during his breakout session.
Travis Mills speaking during his breakout session.
Council Chair, Stephen Schumacher and Council Membet Santa Perez providing the keynote speeches for day 2 of the conference.
Council Chair, Stephen Schumacher and Council Member Santa Perez providing the keynote speeches for day 2 of the conference.

Youth Advocacy Initiatives

Cover of the Youth Empowering Students Student Guide

The Youth Empowering Students or Y.E.S. initiative began to bring transition, advocacy and self-determination information into the schools with a peer to peer education model that reaches youth transitioning out of middle and high school while paying youth with disabilities to teach the curriculum to their peers.

Due to COVID we have stopped offering this program in the schools but we’re in the process of creating video’s to share with advocates, parents and teachers.

Our curriculum provides materials and education on topics such as:

  • Post-Secondary Education and Employment Options
  • Advocacy, Leadership and Community Involvement
  • Guardianship
  • Informed Choice and Self-Determination

Disability Awareness Day at the Legislature

Each Legislative Session the Council facilitates a day for advocates and families  to gather at the Carson City Legislature, meet with their representatives and testify at hearings. Participants are given a guide to testifying at the Legislature, NGCDD Policy Priorities, Bills that pertain to disabilities or other issues important to them.

Understanding Advocacy through the DD Council Lens

For more information on any of these projects contact our Self Advocacy Coordinator, Ellen Marquez at elmarquez@dhhs.nv.gov or call 775-684-8621.