Self-Advocacy Coordinator Status Summary

Self-Advocacy Coordinator Status Summary

FFY’ 17 Third Quarter Reports

For the period ofApril 1, 2017 through June 30, 2017

Table of Contents

Informed Decision Making by Individuals w/IDD

Self Advocacy (IA)

Glossary Of Terms

Nevada Governor's Council on Developmental Disabilities

Compiled 11/16/2018

By: Catherine Nielsen

Please note that some activities will be listed out of order. This is due to varying responsibilities and start dates.

Informed Decision Making by Individuals w/IDD

Goal Summary – (Addresses education/training, cultural diversity, targeted disparity, resource knowledge & network collaboration). Increase and strengthen the knowledge of individuals with I/DD to promote/encourage informed decision making about their choices leading to improved quality of life, increase independence, productivity and full inclusion in their communities.

Goal 1, Objective 1.1: Partner with three Hispanic Organizations in Nevada to Provide greater access to information and services for persons with I/DD.

Project Summary:

Activity 1A) Engage in outreach to targeted Hispanic communities statewide to promote improved access to information and services.

-Catherine has partnered with AZULBLUE to put together the “United by Developmental Disabilities: Advocacy Conference”. Catherine traveled to Las Vegas in June to meet with AZULBLUE, visit the conference location and strategize about the conference. This conference is currently being planned for 100 attendees. These attendees will be people with I/DD and their family members of. There will also be vendors and speakers covering a wide range of topics that will promote improved access to information and services to the Hispanic community. There will also be improved access to the information by providing simultaneous translation during the speeches from English to Spanish.

Activity 1B) Eliminate barriers to accessing Council systems change, advocacy and capacity building initiatives by translating important and relevant documents created by the Council to Spanish.

-Catherine is working with Sherry, Executive Director, to translate materials as necessary. During this quarter, we translated the brochure, the consumer leadership fund application, the 5-year state plan, and the satisfaction survey. We are also working to translate as many materials as possible into Spanish for use during our PACE events. As mentioned above, we will be providing simultaneous translation during our upcoming advocacy conference in Las Vegas.

Activity 1C) Distribute translated materials to identified Hispanic organizations and groups across the State with follow up communications to those agencies to gauge the impact of the materials.

-Catherine distributed several copies of the Tool Guides in Spanish during our planned PACE events including most recently the Journey of Hope Event. We had several families request their materials in Spanish. These families also filled out surveys. Due to the timing of the distribution, the impact will be included on future reports when survey results are calculated.

Activity 1D) Provide increased level of support and information to the Hispanic Community during legislative sessions.

-Due to the timing of Legislative session, this activity will not be reported on. However, during the changes happening in the government, Catherine has continued to provide current and accurate information to the interested parties which several Hispanic Organizations are included on.

Impact of Activity

-Due to timing, the impact of these activities will be reported on during the last quarter report.

NGCDD Expected Outcomes:

-Spanish speaking individuals with I/DD and their families will have the information they need to access services and reduce barriers to supports.

-Strong relationships with culturally diverse agencies and organizations will increase collaborative efforts with the Council.

-More Spanish speaking individuals with I/DD and their families will actively participate in making truly informed choices that effect their lives.

-There will be an increase in Hispanic individuals/groups testifying at the Legislature re: disability issues.

Of Note:

A strong line of communication and a partnership has been established with AZULBLUE in Las Vegas. We have increased the information provided to the Spanish speaking families in Southern Nevada for access to services and reducing barriers to supports in their life via the Tool Guides, thus more Spanish speaking individuals with I/DD and their families will actively participate in making truly informed choices that effect their lives. We have also begun the process of planning for the Advocacy Conference, which we anticipate will increase the level of information provided and available to the Hispanic Community. Our goal with the Self-Advocacy conference is to continue to increase this number.

Goal 1, Objective 1.2: Partner with NV Communities for 6 community based events and activities held in all regions of the State to educated and inform individuals with I/DD, families and professionals about important and emerging disability related issues, services and supports available.

Project Summary:

Activity 1A) Public Awareness Collaboration Events (PACE) will be developed in communities across the State to inform individuals with I/DD, their families and professionals about resources and/or topics of concern identified by consumers in the Council’s 5 Year State Plan to include targeted disparity, emerging issues and areas of emphasis identified in the DD Act.

-Catherine and Kari attended the Spring Fling in May. There was 31 vendors and very little attendance by the public. Due to poor attendance at multiple events, the Governor’s Council has chosen to no longer participate on the Disability Agency Coalition (DAC).

-Catherine attended the Justin Hope Walk at UNR in April. There were approximately 18 agencies represented and over 350 attendees from the public attended the event. Information was provided to these families including the tool guide.

-Catherine and Kari spent several months planning the Journey of Hope Friendship Visit at Western Nevada College in Carson City. Cather, Kari, Sherry and Ellen attended the Journey of Hope Friendship Visit event on June 16, 2017. The event went better than expected with 18 agencies and 40 members of the public attending the event. We received over 20 surveys from families attending the event and will include the results of that survey in our end of year report. We plan to continue hosting this event for the foreseeable future.

Activity 1B) PACE Events to include at least two specific events relevant to un/underserved populations.

-Catherine met with AZULBLUE in Las Vegas in June to go over the layout of the conference at the hotel and to discuss some major details for the planning of the United by Developmental Disabilities Advocacy Conference. This event will be open to the public (with pre-registration) but primarily targets the Hispanic community.

Impact of Activity

-A total of 17 individuals were added to our interested parties list from the PACE events this quarter. 6 self-identified themselves as family members of a person with an I/DD and 6 self-identified as professionals who work with people with an I/DD.

NGCDD Expected Outcomes:

-Individuals with I/DD, families and professionals will be educated about important and immerging disability issues, services and support locally and nationally.

-More people with I/DD, families and professionals will make truly informed choices, therefore reducing barriers to accessing supports and services.

Of Note:Due to timing of these events and surveys being conducted/calculated, the impact of these events will be reported on, on the end of year report. Due to several goals overlapping in information, you may see duplicates of the same information. Data for these goals will remain separate and non-duplicative.

Goal 1, Objective 1.3: Participate in a minimum of 6 (councils/committees/coalitions) to promote communications within and between agencies to ensure cohesive information about services and supports are available.

Project Summary:

Activity 1B) Self-Advocacy Coordinator will attend statewide committees and councils compromised of multiple agency representatives and bring that information back to the self-advocates.

-Catherine and Kari attended the Disability Agency Coalition (DAC) meetings in April and May to continue planning the Spring Fling. The Council will no longer be attending the DAC meetings as of June 2017.

-Catherine attended the CAAN (Carson Agency Action Network) monthly meeting in April, May and Juneand met with 15 different agencies in the Carson/Reno area to discuss cohesive information about services and supports available in our community.

Impact of Activity:

-Due to timing of these events, impacts will be reported on during the end of year report.

Activity 1B)

-Attending the DAC meetings allowed the Council to have input on how/where the Spring Fling event took place. The Spring Fling was not a success, due primarily to the duties of those assigned tasks that went uncompleted. Due to the amount of work that was put in by the Governor’s Council being much more than anyone else on the DAC, the input of work became unequal. It was decided that the time staff spent on outside events would be better spent in office.Because of this, the Council will no longer be a part of the DAC.

NGCDD Expected Outcomes:

-Increased communication within and between agencies.

-Increased interagency collaborations.

-Council will ensure the voice of our consumers is heard within those agencies.

Of Note:Due to several goals overlapping in information, you may see duplicates of the same information. Data for these goals will remain separate and non-duplicative.

Self Advocacy (IA)

Goal Summary – Addresses advocacy, education/training, cultural diversity, targeted disparity & network collaboration). Ensuring individuals with I/DD have the education and training necessary to participate in advocacy and policy making activities.

Goal 2, Objective 2.1: Establish/strengthen minimum of 1 State self-advocacy organization led by individuals with I/DD.

Project Summary:

Activity 1B) Self-Advocacy Coordinator will 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.

-Catherine and Council member, David Sorenson, attended the Carson City People First Chapter meetings in April and David attended the final meeting in May. Due to poor attendance and no active members within the Carson City Chapter, it was decided by the People First President and Council Member, Jay Arant, to close the Carson City Chapter.

-Catherine attended several Aktion Club meetings in Gardnerville in April, May and June. At these meetings information on self-advocacy, the council, the tool guides, and consumer leadership were provided. Approximately 35 Tool Guides were given to the Aktion Club and their family members.

-Though there was a People First statewide test meeting in March, the State-wide meeting for May 22 did not go smoothly as there was several technical difficulties. It was re-scheduled again for June, but again technical difficulties stopped the meeting from taking place. In an attempt to decrease the technical issues, several more people have been added as administrators on the gotomeeting account for People First. The laptops provided to us by EPIC have all been administered to the community members and are being actively used by the Chapters.

-Catherine also met with Family Support Council in Gardnerville to provide them information on the Council, self-advocacy, the tool guides, and consumer leadership. 10 Tool Guides were given to Family Support Council (5 English/5 Spanish).

-During Catherine’s most recent trip to Las Vegas, she also met with Best Buddies and FEAT (Families for Effective Autism Treatment). Best Buddies works with a wide range of disabilities and provides services that most organizations do not, such as a buddy program that matches those with a disability to a friend without. During these meetings Catherine was able to open a line of communication and began a possible partnership for future events. This type of communication allows for I/DD Network representatives and individuals across the state to promote relationship building, information and resource sharing between these organizations and the council.

Activity 1C) Self-Advocacy Coordinator will identify and share funding opportunities to assist self-advocacy organizations in achieving/maintain sustainability.

-Catherine has presented to the Aktion Club of the Carson Valley about the Consumer Leadership applications. Due to this presenting, we took the Aktion Club President and his mother to the Supported Life Self-Advocacy Conference in Sacramento, CA.Tony and his mother brought back the information gathered and presented it to the Aktion Club at the end of May. We were also able to take A-Team member Jacqueline Price and her personal care attendant, Arianna to attend the Self-Advocacy Conference in Sacramento, CA. Jacqueline and Arianna were able to bring the information back to the A-Team members in Nevada. We also took Council member/People First Member Santa Perez and Council Member/People First President Jay Arant and his father. Catherine, Santa and Jay gave a presentation at this conference on Self-Advocacy and showed a preview of the Self-Advocacy videos we filmed in the second quarter.

Activity 1D) Self-advocates will participate in the biennial Legislative sessions by bringing forward issues that are important to them and taking a leadership role in developing their own legislative agenda.

-The Legislature is no longer in session in Nevada. Though Catherine, Ellen, Kari and Sherry have continued to provide up to date information on governmental and law changes that may affect the I/DD community. Self-advocates at the Aktion Club, A-Team and People First Chapters were given guidance, resources, information and support to promote relationship building among themselves as well as key policy makers/legislatures.

Impact of Activity:

-Four members (and two family members) of the I/DD community were provided funding to attend a self-advocacy conference out of state. 45 tool guides were provided to people with/family members of/or professionals in the I/DD community. This assisted in providing guidance, resources, information and support that promotes relationship building among themselves and their community.

NGCDD Expected Outcomes:

-Self-Advocates will have the guidance, resources, information and support to promote relationship building among themselves.

-Key policy makers/legislature will receive education from self-advocates on disability issues.

-A strong, independent, self-advocacy organization run by individuals with I/DD will exist in Nevada.

-Self-Advocacy groups will work toward becoming financially sustainable.

-Self-Advocacy groups will work together to take a leadership role in developing coordinated legislative agenda’s.

-Increase in number of SA’s showing a united front, testifying at the Legislature.

Of Note:

Self-Advocates were given guidance, resources, information and support to promote relationship building among themselves as well as key policy makers/legislatures. Currently People First, A-Team NV and Aktion Club are all very strong and successful Self-Advocacy organizations in Nevada that are all ran by individuals with I/DD. Each of the organizations is financially sustainable and independently managed. Several members of the various Self-Advocacy organizations wrote letters to their representatives in regards to the current governmental and law related issues on the table at the Federal and state levels. Due to several goals overlapping in information, you may see duplicates of the same information. Data for these goals will remain separate and non-duplicative.

Goal 2, Objective 2.2: Support opportunities for a minimum of 10 self-advocacy leaders with I/DD to provide leadership training to youth with I/DD.

Project Summary:

Activity 1A) Year 1, a Youth Leadership initiative established in 2 regions of the State engaging PIP graduates and Self-Advocacy leaders to provide information to students with I/DD, their teachers and parents regarding self-determination, advocacy, post-secondary education and employment options.

-Catherine has developed a curriculum with the help and guidance of Kari. This curriculum has been titled “Y.E.S.!” which stands for “Youth Empowering Students”. We approached vocational rehab to discuss utilizing this curriculum as a “Pre-ETS” (Pre-Employment Training Services) program. After meeting with the Administrator and Bureau Chief of Vocational Rehab, we decided it would be best to take our program and run it as its own. During the pilot year, Catherine will be teaching this curriculum with the next set of trainers alongside her. The goal of the program, is by the end of the pilot year, we have trained at least 10 self-advocates to continue teaching this course. We have approached several schools about implementing this program into their special education classrooms in the 17-18 school year. Each school we’ve spoken to has been very interested in adding this to their curriculum. We met with C.J. Fields, a special education teacher at Dayton High School, who is now transitioning to the transition coordinator for Lyon County. He allowed Catherine and Tony (Aktion Club President) to observe his classroom and teaching styles, to get a better understanding of how to successfully teach this course to the students. C.J. also gave a suggestion of one of his previous students, who may be a good fit for one of the trainer positions. The curriculum has been completed, though changes will continue to be made throughout the pilot year. We also plan to continue to adapt the curriculum to the level of ability per student as well as eventually adapting the curriculum to be implemented at the middle school level. As the curriculum currently stands, it is only for high school level students.